4 Having a stem cell transplant
After a suitable donor has been found and everything has been checked by your medical team, your stem cell transplant can go ahead.
Your treatment will begin in hospital with a course of conditioning therapy, which prepares your body for your new stem cells.
After the transplant you will need to spend a few weeks in hospital while you recover. It’s very hard to say how long you will be in hospital for as everyone’s situation is different, but it will probably be around six to eight weeks.
If you have any questions or concerns about what is happening at any stage, you can talk to your transplant team. They will be happy to talk through the process with you and help put your mind at ease. There will be a lot of complex information to take in, so don’t worry about asking for something to be explained twice if you haven’t fully understood.
This section focuses on your time in hospital and has detailed information on the different stages of your treatment. There’s also advice on looking after your mental health during what can be a very challenging time.
You will find information on:
4.1 Conditioning therapy
Before your stem cell transplant can happen, you will need to stay in hospital and have a course of treatment known as conditioning therapy. This will last around a week and consist of
The chemotherapy could be given as a tablet, but will more likely be delivered as a liquid through your central venous catheter (CVC), also known as your central line.
If you have radiotherapy, it will be given at your hospital by a radiographer. This will remove any abnormal cells that are causing your condition, and prepare your bone marrow so it can receive your new stem cells.
There are two different types of conditioning therapy: full intensity (or myeloablative) and reduced intensity conditioning (RIC). Your consultant will consider many factors when deciding the best option for you, including your age, general health and the type of blood cancer or blood disorder you have.
4.1.1 Full intensity
This will be used if your consultant feels you are fit and well enough to cope with the
side effects i
it can cause. As a result, it’s used more with younger patients and will definitely be used if you have an
transplant. It’s strong enough to remove all your existing blood stem cells. This is why your donor’s stem cells need to be added to your blood as soon as treatment has finished, so that they can rebuild your immune system as soon as possible.
Cyclophosphamide and busulfan are two of the most commonly used chemotherapy drugs for full intensity conditioning. However, new treatments are constantly being developed so you may hear your medical team talking about other types of drugs too.
4.1.2 Reduced Intensity
This type of conditioning therapy is an alternative for patients who are not fit enough to have full intensity conditioning treatment.
RIC is often given alongside drugs that suppress your immune system because it’s not strong enough to completely remove all your blood stem cells. This means that after your transplant, there will be a mixture of your own and your donor’s stem cells in your blood. We call this a chimerism, and the closer it is to 100% donor, the better. Your chimerism will be monitored by your doctor regularly to make sure that everything is ok. You may be given a donor lymphocyte infusion (DLI) to boost your immune system and ‘top up’ your chimerism.
Unfortunately, there is a higher chance of developing complications or relapsing after transplant with RIC. However, it allows many patients to receive a potentially lifesaving (or life-prolonging) stem cell transplant that wouldn’t have otherwise been possible. It’s often used when older patients need a transplant, particularly for treating acute myeloid leukaemia (AML) and myelodysplastic syndrome (MDS).
4.2 Transplant day
Transplant day normally happens the day after your conditioning therapy finishes. People often call it ‘day zero’.
4.2.1 What happens during the stem cell transplant?
To start with, your nurse will check your pulse, blood pressure and temperature. They will also give you an anti-histamine and a small dose of steroids via your central line. This will help to stop any allergic reaction during the infusion of your new stem cells.
The cells will be passed as a fluid through your central line in the same way as a blood transfusion. This can take between 30 minutes and a few hours.
The transplant isn’t painful and you’ll be awake the whole time. When the infusion has finished your nurse will flush your line through with saline to keep it clean. You’ll have your blood pressure, pulse and temperature checked again, and then the transplant is complete.
People have different experiences of transplant day. For some it’s a celebration of a new beginning, a second birthday. For others it’s a bit of an anti-climax because something so important is over so quickly and simply.
The transplant itself was very uneventful, just like having a blood transfusion. I was very excited and relieved when it was happening, but my son (who was having it) slept through the whole thing.
Holly, whose son Rupert had a stem cell transplant.
4.2.2 What medication will I need to take?
You will take a number of different medications to help you through your transplant and during your recovery. They may come in tablet form but some will be delivered through your central line too.
These drugs will often have strange sounding names and it can be difficult to remember why each one is needed but, in general, it will be for one of five reasons:
• to help engraftment, the forming of your new blood cells, happen more quickly (called growth factors)
• to help control your new immune system and reduce the effects of GvHD
• to protect from bacterial infections (called antibacterial prophylaxis)
• to prevent viral infections
• to control other symptoms and side effects.
My daughter Caitlin took a photo of the cells going in. To be honest it's just a normal day, it's a transfusion just like all the ones I'd had before. But god, it makes a difference!
Nigel, who had a transplant in 2013 - you can read his story here
4.2.3 How will I know if the stem cell transplant has worked?
After the transplant, your new stem cells travel in your bloodstream to your bone marrow. Once there, they attach themselves and start to produce new blood cells that will form your new immune system. This is called engraftment.
Engraftment normally takes around two to three weeks, but it can sometimes take longer. The first sign of engraftment is often an increase in your white blood cell count. Your medical team will test your blood regularly so they know when it has started and that they are steadily increasing.
During this time, you might need blood and platelet transfusions a few times a week. This is to help ‘top up’ your red blood cells, which may also be low. It’s a normal part of recovery and doesn’t mean that your transplant isn’t working. However, if you do have concerns, you should talk to your medical team about it.
4.3 Your stay in protective isolation
4.3.1 What is protective isolation?
You will be placed into protective isolation on the day of your stem cell transplant, if not before. If you have a blood cancer you may have experienced protective isolation after you had chemotherapy. Although the set-up and rules can vary between hospitals, the overall purpose is to keep you in a germ-free environment while your blood cell counts are low.
You will be in your own room, where you will spend most of your time. It will have a bed, sink, shower and toilet, as well as an emergency button in case you need immediate help. There will probably be a filter system to keep the air clean and sterile, and the door and windows will be kept closed at all times.
Your bedding will be changed and your room cleaned daily. Your personal possessions will also need to be wiped clean on a regular basis. These measures kill germs and reduce your risk of getting an infection. All medical staff and visitors will have to clean their hands with alcohol wash when entering your room. They may also have to wear protective clothing.
In the first few weeks you will be put on a ‘low bacteria’ diet that’s similar to diets recommended to pregnant women. It will not include foods that are rich in bacteria (such as soft cheeses or yoghurts) that could cause infection.
4.3.2 During isolation
Many of our patients recommend getting into a daily routine during your stay. It doesn’t have to be anything complex, but giving structure and meaning to your day can make the situation feel more normal. Making the effort to get out of bed, showered and into fresh clothes can make a huge difference to how you feel. However, on days when this is difficult, you should still try to get out of bed at mealtimes at least.
Anything that you can bring into the hospital to keep you entertained will really help pass the time. You could lose yourself in your favourite film or set up membership to a media streaming service. Listening to music, podcasts or audiobooks is another option, especially if you don’t feel up to reading just yet.
Your smartphone or other similar device is the simplest way to keep in contact with the outside world, whether it’s catching up with friends and family on social media or reading about world events. Find out if your hospital offers free Wi-Fi and check on the 4G coverage/data usage of your phone contract.
Although it might be difficult, focusing on your creative side can be a very enjoyable experience during isolation. It can allow you to express your emotions in ways that might otherwise be difficult to put into words. Often, you might not have the energy to concentrate but if you bring in what you need for your favourite hobby you can give it a try if you feel up to it.
There will be times when you don’t have the energy to concentrate on some of the things you enjoy doing. Try to not worry about it – some days will be harder than others. It’s OK if all you feel like doing is watching TV on a bad day – but you should also take advantage of the good days and do something you really enjoy.
You might not feel like doing much at all, but even a small amount of activity can help reduce fatigue and improve your physical strength. Moving around in your room will also stop you feeling stiff. Ask to speak to a physiotherapist so they can give you some specific advice about exercises you can do safely during your recovery. This will probably be a series of low impact stretches and yoga poses.
You might also be given some simple breathing techniques to do daily. This will reduce the chance of you developing a chest infection.
It can be difficult to sleep in unfamiliar surroundings, and your sleep will be disrupted by your medical team checking on your progress every four hours. However, it’s still a good idea to keep your curtains open and let natural light in during the day. It will keep your day/night cycle in sync, so you are more awake during the day and ready to sleep at night.
Keeping in touch with loved ones
Most hospitals will let you select two or three people who can enter your room and be with you for most of your time in isolation.
They will also be able to bring things in from home that you may have forgotten, or that you decide you need during your stay. Other friends and family will be able to come and see you – they may or may not be allowed into your room but can talk to you through an intercom or your mobile phones.
However, it’s perfectly normal if there are times when you don’t feel like seeing visitors. Try to not feel guilty about letting someone else down. Your wellbeing is the most important thing to you and they will understand that you have to put your recovery first.
The potential risk of infection from seeing friends and family can be a source of worry and anxiety for many patients. This shouldn’t be a problem if they are honest about how they are feeling and follow the rules the unit has for infection control. However, if you have concerns, you shouldn’t be afraid of being cautious and challenge them if you feel you have to.
By writing an online blog or using social media, you can connect with your wider circle of friends and family and update everyone on your progress easily in one go. You may find it very therapeutic to write about your experiences, both good and bad.
Alternatively, you could ask a few people close to you to update your friends and family on your behalf. This allows you to keep in touch with everyone but removes the pressure of having to re-tell the same story repeatedly, which can become draining.
Unfortunately, most isolation wards don’t allow children into the patient rooms. This is because of the infections that children might be carrying from mixing with others at their nursery or school.
However, they might have the chance to see you and talk to you through an intercom. Video calling can also be a good alternative, enabling you to see your children face-to-face every day.
4.4 Dealing with early side effects
During the first few weeks of your recovery, while you are still in hospital, you’re likely to experience some side effects from your treatment. Most of these early problems come from the chemotherapy and/or radiotherapy you had before your transplant but other concerns, such as GvHD, could also develop. Your medical team will be monitoring you every day and will treat any of the following side effects you might have:
4.4.1 Nausea and vomiting
It’s common to feel sick and be sick after your transplant because of your treatment, medication, a possible infection or GvHD.
Nausea normally only lasts a week or two for most people. If you struggle with nausea for longer, talk to your transplant team because they might need to change your medication.
Possible treatments – Anti-emetic drugs stop you feeling nauseous. They may be given as tablets, through your central line or as a patch on your skin.
What might help – It’s important to replace lost fluids and stay hydrated. Isotonic drinks or sachets of oral rehydration salts replace lost salts and sugars (electrolytes) that your cells need to stay healthy.
As with nausea, diarrhoea can have many different causes (including GvHD). If diarrhoea occurs for a long time, it can affect how you absorb vitamins and minerals from food, which can lead to weight loss. It’s important to tell your doctor or nurse if you are having diarrhoea.
Possible treatments – Anti-diarrhoeal medication can help but your medical team will be keen to identify the cause of the problem. They might suggest changes to your diet, eating habits or medications.
What might help – Eating plain foods that are easier to digest and keeping hydrated with plenty of fluids.
4.4.3 Sore mouth (mucositis)
Chemotherapy damages the cells in the mucosal lining of your mouth. The skin can break down, which can cause painful ulcers to form inside your mouth and throat.
Ulcers may also form further down your digestive tract, which can cause discomfort and make it difficult to eat certain foods. This normally occurs about a week after treatment and will clear up in a week or two.
Possible treatments – Painkillers and sprays or gels that keep your mouth moist. If you find regular painkillers are not working well enough, your doctor might recommend a continuous infusion of a strong painkiller, such as morphine, given through a small pump into the tissue just under the skin. You will also be encouraged to practise good oral hygiene and use mouthwash. A toothbrush with softer bristles could be more suitable if you have sore gums.
What might help – It will probably be easier to eat softer foods like mashed potato and soup. Ice lollies can help to numb any gum pain and are a good way of taking on extra fluid.
4.4.4 Weight loss and lack of appetite
Food can often taste different after chemotherapy and you might find that you don’t have the same appetite for food as you did before. If you also experience prolonged sickness and diarrhoea, it could stop you getting the nutrients and energy needed for your recovery.
Possible treatments – Your weight will be monitored by your medical team regularly. You may see a dietician who can advise on how to increase your nutritional intake and give you supplement drinks or soups. However, if problems persist, you may need to be fed via a feeding tube. There are two possible types that provide nutrition in slightly different ways.
• Enteral nutrition – When nutrition is passed through a small tube directly into your stomach. This will most likely be a nasogastric tube, inserted through your nose and down your throat. It will probably stay in for a few weeks or until your condition improves. These tubes help patients who have sore mouths or find swallowing difficult.
• Parenteral nutrition – When nutrition is delivered directly into your bloodstream through your central line. It will be administered by your nurse and then your line will be cleaned to reduce the risk of infection. This option is often used if you experience severe GvHD in your digestive tract or if it’s very difficult to keep any food or drink down.
What might help – Try changing your eating habits or the types of food you eat. Eating smaller amounts of plain foods more often and drinking flavoured water could be an easier option.
When we talk about fatigue, we don’t just mean feeling tired after hard work. Fatigue is when you find it difficult to concentrate and have no energy, even after lots of rest and a good night’s sleep.
Fatigue can be a short-term effect of your treatment that improves after a few months, but some patients experience it more than a year after their transplant. As surprising as it sounds, gentle exercise has been shown to help reduce treatment-related fatigue and improve your strength and energy levels. You will really feel the benefit of doing something, no matter how small.
It's going to the end of the road to get the newspaper, and having to sit down halfway home, and then that wiping you out for the rest of the day.
David, who had a transplant in 2014
Possible treatments – Your hospital’s physiotherapist can set up a programme of lite exercises and stretches for you to do daily.
4.4.6 Risk of infections
In the few weeks after your transplant, your new immune system is still developing. This means that there is a greater risk of picking up an infection. Your medical team will look out for the early signs of an infection, such as a raised temperature, so that you are treated as soon as possible.
Possible treatments – You will be given a course of antibiotics, anti-fungal or anti-viral drugs depending on the cause of your infection.
What might help – The protective isolation ward you are staying in will have measures in place to reduce the risk of infection. This includes air filters, alcohol gel hand washes, daily bedding changes and regular cleaning.
4.4.7 Other concerns
Some patients develop other complications such as liver and kidney problems.
4.5 Looking after your mental health during your transplant
During your stay in protective isolation you will have lots of spare time on your hands. Many of our patients talk about how much of an emotionally sapping and lonely experience it can be.
It’s easy to have negative thoughts about your situation and become anxious about an uncertain future. Although it’s perfectly normal to have these thoughts, they could turn into something more serious, especially if you’re not able to see the people you love as often as you need.
4.5.1 Coping mechanisms
In simple terms, a ‘coping mechanism’ is anything you do to feel less stressed. They can help relieve stress, help you relax or control your emotions. Different things will work for different people in different situations, so we can’t say what will work for you, but here are a few suggestions:
- Take a deep breath – it sounds simple but it can really calm your nerves.
- Mindfulness – this meditation-based approach can help you to stay calm and focus on the present, rather than worry about the future. Mobile apps such as Headspace can be downloaded to your phone or tablet and act as a good introduction. They can provide you with daily meditation programs that take around 10 minutes to complete and focus on a wide range of different topics.
- Discovery – Give your mind a different topic to focus on, other than your health. You might want to learn about something new that interests you, such as a period in history or a famous person.
- Have a laugh – everybody has something that always makes them laugh, so take your favourite comedies with you or ask your friends for their recommendations.
- Find out more – if you are unsure about anything to do with your transplant or recovery, talk to your medical team, they will be able to put your mind at ease.
4.5.2 Signs of something more serious
A time may come when you feel you need extra support to help you cope. It’s not always easy to identify when you might need this, especially if you are feeling low. If you start to experience some of the following, you should talk to your medical team about it:
• you’ve been feeling very low for two weeks or more
• you can’t find the motivation to do anything, even important tasks
• you feel unable to control your thoughts
• you’re feeling much more anxious than usual.
4.5.3 Getting some extra help
If you would like to talk to a counsellor or try a talking therapy, your transplant team will be able to refer you. If you have never used this kind of therapy before, it can seem a little strange at first – but hopefully it will make you feel more positive about your situation.
4.6 Sharing details of your transplant
Writing about your experience can be helpful in your recovery. Whether it’s blogging, tweeting or posting updates on Facebook, you can let people know what it’s like to have a transplant, and raise awareness of how important stem cell donation really is.
If you decide you want to share your experience online, follow our simple guide:
• You need to make sure your donor remains anonymous. Please don’t post any information about your donor’s location, age or gender, and make sure the information label on your stem cell bag is not visible if you post a photo.
• It’s also important that you don’t try to contact your donor directly on social media, or share any correspondence with your donor without express permission, as this could compromise their anonymity. This is to protect both the donor’s and your privacy.
• We would love to read your posts, so make sure you tag us: @
4.7 Coming home
4.7.1 Preparing to return home
By the time you are well enough to go home, you might feel a bit overwhelmed and experience many different emotions all at once. Many patients are relieved and excited about going home, but others worry about coping without the support they received in hospital.
You may not have realised it, but you have already spent a few weeks getting used to being a transplant recipient and the regular medical checks that need to happen. You are probably more aware of your body already and how to spot the signs of any side effects, so try not to worry. Your team will only be happy for you to go home once they are sure you are safe and ready.
4.7.2 The essentials
It’s important that you feel prepared to go home. Your nurse will come to see you before you leave hospital for a ‘going home’ talk, when they will provide you with:
• contact details for your transplant team, including an out-of-hours number
• information on looking after your CVC (Central Venous Catheter)
• advice about nutrition, your diet and some gentle physical exercise you can do at home
• information on what to do if there’s a sudden change in your temperature
• information on what to do if you develop a rash or diarrhoea
• your medication and information on how to take it
• the times of your first appointments in out-patients.
4.7.3 Life at home
You might find that you aren’t as independent as you were before your transplant and that you have to rely on the help of your family and friends more than you were expecting. This will not last forever and, as you recover, you will begin to regain your independence.
Although being well enough to return home is a significant milestone in your recovery, the day-to-day reality of being at home can be challenging for some people. Many patients we talk to were surprised about how isolated they felt during this time because they were often in the house alone.
This time will pass much more quickly if you break each day down into small, manageable chunks, and set yourself goals for what you would like to achieve. For example, you might decide to go for a 30-minute walk or do a craft you enjoy for an hour. Doing a small amount of exercise each day will also help reduce the effects of fatigue.
5 Recovery: Body
Life after a stem cell transplant comes with its own set of challenges, and leaving hospital for the first time can be both a happy but daunting experience. Some people find their recovery is relatively straightforward, but for others it can be very difficult and demanding.
Your recovery is likely to affect many aspects of your life, which is why we have sorted our information on recovery into three sections: Body, Mind and Life.
Every person’s recovery is unique and these pages are here to help and support you throughout this journey.
The Body section focuses on everything to do with the physical side of your recovery – from the weekly check-ups you will need once you leave hospital, to possible late effects that might happen years after your transplant. You can learn about how to manage fatigue, infections and other possible transplant side effects. It also looks at Graft vs Host Disease (GvHD), why it happens, how it can affect different organs at different times and possible treatments.
You can find more information, support and advice on the following topics:
5.1 Physical side effects of transplant
Many early side effects of your stem cell transplant will improve naturally, or with medication, over the space of a few weeks or months. This normally happens during your hospital stay.
However, there are other side effects that could develop a little later or persist for longer. These longer-term side effects are one of the main reasons why you will be regularly monitored by your medical team while you recover. They are often caused by changes in your medication, how well your new immune system is developing, and Graft vs Host Disease.
Knowing more about the possible symptoms will allow you to get help, if and when they start to develop. This might seem a bit overwhelming, but don’t forget that these are potential side effects – it doesn’t mean that you will get all of them. Your transplant team will be close by to treat and support you.
These side effects are different to the late effects of transplant that might happen many years later.
This section covers the following topics:
- Wight loss
If you have been having problems with nausea, sickness or diarrhoea, it could mean that you aren’t receiving enough nutrition from your food. For some people, these symptoms improve after a few weeks but some people have to deal with them for longer. If this happens for a long time, it can lead to weight loss, make you feel more fatigued and affect your long-term recovery.
There are many options you and your medical team can try to control these problems, including medication, changes to your diet and changes to your eating behaviour.
I lost a third of my body weight rapidly. My mum said I looked skeletal. That really affected me psychologically. But when I did put weight back on and fill out my clothes, I started to look more like myself - that was a great feeling.
Rob, who had a transplant in 2014
Many patients will have to deal with a certain level of pain during their recovery. It can happen in different parts of your body including your nerves, bones, joints and other organs.
Coping with pain can be physically and emotionally draining, which could slow down your overall recovery, so it’s important to report any pain to your medical team quickly. They are likely to offer you pain relief treatment but they may also discuss other techniques with you, such as meditation or mindfulness, so that you are better equipped to cope with your situation.
If the pain gets more intense, you may be referred to a palliative care team. It’s a common misconception that palliative care is the same as end of life care, but your referral doesn’t mean that your transplant is failing. Palliative specialists are experts in managing pain and will be able to make you feel more comfortable.
You might experience new bruising or bleeding at times, including a persistent nosebleed or blood in your urine or poo.
There can be many possible reasons for bleeding, so contact your medical team immediately and they will investigate the problem.
One of the most common reasons for bleeding is that your platelet count is low, so it’s harder for your blood to clot. Your hospital will be able to arrange a platelet transfusion for you. This treatment is very similar to a blood transfusion.
- Joints and muscles
After your transplant, the combination of different side effects will probably leave you feeling very weak and you are likely to have lost some of your muscle strength. Long term steroid treatment for GvHD will also cause your muscles to weaken.
Regular physiotherapy and light exercises, such as walking or yoga, will help rebuild your strength and stamina, and improve your balance.
I've had treatment from a physiotherapist and I try to incorporate stretches into my daily routine so that it isn't a chore. For example, when I clean my teeth I stand on the edge of the bottom stair with my heels hanging off to stretch out my calves.
Alexandra, who had two stem cell transplants. You can read her experience with GvHD here.
Some patients will also experience numbness or tingly sensations in their hands and feet. This happens because nerves can be damaged by chemotherapy given during conditioning therapy. It can make tasks like walking or exercising more difficult but it usually improves over time, and physiotherapy will help.
I've got nerve damage in the bottom of my feet and I use a cane to walk. I had to have physio and see a personal trainer to help me re-walk again but two and a half years later I feel much better.
Dylan, who had a stem cell transplant in 2014.
Your kidneys filter out waste from your blood that is then removed from your body in urine. They also help to keep the balance of important substances in your body, like salt and water.
Mild kidney problems are common after a stem cell transplant, so your medical team will test your kidney function in your check-ups. Problems can be caused by your medication, an infection or simple dehydration. Your medication may need to be changed or you could be put on a drip to give you extra fluids.
Long term kidney problems can also happen, but they are less common. You may need to go back into hospital for treatments including dialysis – when your blood passes through a machine to filter and clean your blood.
The most common problem to affect your liver after transplant is called hepatic veno-occlusive disease (VOD) or sinusoidal obstruction syndrome (SOS). It’s caused by conditioning therapy that damages the cells of your liver, and it’s likely to happen in the first few weeks after your transplant. Patients that had high doses of chemotherapy have a higher risk of developing VOD.
It can cause abdominal pain and swelling, jaundice (when your skin looks yellow), sickness and fatigue. Often, these symptoms are mild and disappear quickly, so you might not even know you have it. However, things could get worse quickly – so talk to your medical team if you start to have any new symptoms. Your medical team will check your liver function regularly and may need to change your medication from time to time.
- Thrombotic thromcocytopenic purpura (TTP)
Thrombotic thrombocytopenic purpura (TTP) is a rare condition that affects about 1 in 20 patients. It causes small clots to form in your blood following your transplant. This means you have less platelets available to do their normal job of helping your blood to clot following an injury. TTP can cause fever or headaches, and you might find that you bruise easily. It has been linked to certain medications, so your medical team may need to review the drugs you are taking.
- Sex and relationships
The side effects of your stem cell transplant can make the act of having sex uncomfortable and even painful. Many patients also have concerns about how their body has changed, which in turn affects their confidence. Our sex and relationships section has more information on this topic, as well as support and advice.
5.2 Managing Fatigue
When we talk about fatigue, we don’t just mean feeling tired after working hard. Fatigue is when you find it difficult to concentrate and have no energy, even after lots of rest and a good night’s sleep. It can make you feel both physically and mentally drained, leaving you with very little motivation and it can be hard to concentrate, even on simple things.
Fatigue can be a short-term effect that improves after a few months, but some patients still experience it more than a year after their transplant. It’s often the result of many factors, such as:
• your pre-transplant conditioning therapy
• your cancer or blood disorder
• side effects, such as Graft versus Host Disease (GvHD), anaemia or hormone changes
• medications you are taking
• your age, general health and wellbeing
• feelings of anxiety, worry or depression.
Rachel, who has received two stem cell transplants for AML.
There may be times in your recovery when fatigue is unavoidable, but it’s still possible to manage your situation and make the best of the energy you have.
There are four main ways you can help reduce the effects of fatigue
5.2.1 Managing your energy levels
Many patients find that their energy levels go through highs and lows during the day. It’s very easy to overdo it when you get up in the morning and feel full of energy, only to need a nap in the afternoon. If you get into the habit of listening to your body and know how you are likely to react to certain activities, it will become easier to manage your fatigue.
Plan ahead – Make a list of the things you want to do each day. Even if you are having a really bad day, try to do at least one thing. It can be really difficult, but achieving something will make you feel more positive and may lift your mood.
Little and often – Break down your tasks into small and manageable goals and make sure you get some rest in between. This will help top up your energy levels regularly and reduce the risk of becoming exhausted.
Keep a diary – Make a note of the times you feel better or worse. This will help you to spot patterns and make changes to your routine that could help.
I've always been the sort of person that just wants to do things now, rather than wait. But I knew that it was important to try and keep to a routine, and that's exactly what I did.
Jimmy, who had a stem cell transplant in 2014.
5.2.2 Physical activity and exercise
Exercise may feel like the last thing you want to do, but it can help reduce fatigue and improve physical strength. You will find that your fitness, endurance and muscle strength will have reduced during your treatment. Keeping active and slowly building up towards structured exercise will be an important part of your recovery.
Find something that you enjoy, such as walking, swimming or yoga. If you have a favourite sport, it might be time to start playing again, or you could try something completely new.
If you are really struggling with fatigue, or having a particularly bad day, these activities may not be suitable. Sometimes even the smallest physical activity can be a real challenge, but it’s important to still do something.
After my transplant I was very, very weak. I couldn't get up the stairs without being really out of breath. As part of my recovery I was receiving some physiotherapy, and those daily exercises helped get some movement back in my routine.
Ashling, who had a transplant in 2012.
5.2.3 Sleep well
Improving the quality and amount of sleep you get each night will give you more energy and help your recovery. However, you might find it difficult to sleep for a variety of reasons. If you can record your sleep patterns using a wearable fitness tracking device, or make a note of the hours you sleep, you can look back on when these problems occur. This will help your medical team spot patterns and work out how they can help.
If you are struggling to get a good night's sleep, you might find the following suggestions helpful:
• Avoid alcohol, caffeine and nicotine for four hours before sleep.
• Don’t use devices with an electronic screen in the hour before bed.
• Write down anything that’s worrying you before going to sleep.
• Start a relaxing pre-sleep routine, such as reading a book.
• Stick to a regular sleeping pattern – your body’s natural sleep cycle will be more settled.
• Create a calm, dark and cool sleeping environment.
• Limit your daytime naps – it will help you feel more tired at the end of the day.
• Only go to bed if you feel truly tired – if sleep doesn’t come, try to do something relaxing like reading or listening to podcasts.
5.2.4 Delegate daily tasks
Even simple day-to-day tasks can be difficult for someone with fatigue, but having a strong support network around you will help relieve the burden.
Relatives and close friends might be able to help around the house, especially with jobs like emptying the bins that could be an infection risk. They may also be able to help with childcare from time to time, so that you can get some rest.
Other tasks, such as your weekly shopping, can be done online and delivered to your door so you don’t have to worry about filling a trolley at the supermarket.
If you can afford it, paying for a cleaner would also free up your time to focus on your recovery.
One of the big challenges surrounding fatigue can be explaining it to those around you. Your friends, family and work colleagues may think that now you’ve had a transplant, you’re better and can get on with life as normal. But really, you’re still recovering.
Depending on your situation, you might have to return to work while still managing your fatigue. This can be a challenging time but if you make your employer aware of your situation, they should be able to put a plan in place to help you.
5.3 Dealing with infections
You’ll be at an increased risk of getting an infection as your immune system recovers, which can take up to a year or longer. Infections are caused by viruses, bacteria and fungi. They can happen anywhere in your body but the most common ones are likely to be caused by your central venous catheter (CVC), your respiratory system or your gut.
This webpage covers the following topics:
5.3.1 Early signs of infection
It’s important to spot the signs of an infection as early as possible to stop it becoming too severe. You know your body best and you can tell when something isn’t right, so have the confidence to contact your medical team and get checked out.
If you have any of the following symptoms, it could be a sign of infection:
• A temperature higher than 38°C or a temperature that rises or falls suddenly. Keep a thermometer (in good working order) at home and take your temperature regularly, especially if you are feeling unwell. Some medications, such as paracetamol, ibuprofen and steroids, can mask changes in temperature, so look out for other symptoms too.
• Chills, a fever or no appetite for food or drink.
• Diarrhoea, frequent or painful urination, blood in your urine or poo or abdominal pain and cramps.
• Severe fatigue, bleeding, coughing, shortness of breath, chest pain or severe headaches.
Be aware of what your body is telling you. Tune in to it and recognise when something feels different or off. And tell your clinical nurse specialist straight away to get things checked out.
Steve, who had a stem cell transplant in 2013.
5.3.2 If you see signs of infection
We’ve all had little niggles that should have been checked out by a doctor or dentist, only for them to be forgotten about in our busy lives. Unfortunately, if problems happen they are unlikely to go away by themselves and will get worse if left untreated.
You should have been given the contact details of a doctor or nurse in your medical team who you can talk to. You can also visit your GP, but if things happen very quickly, you should go straight to A&E. There is a risk of your body’s immune response also causing damage to other parts of your body. This is known as sepsis and if it occurs, you will need immediate medical treatment. This could include intravenous antibodies delivered via a drip directly into your blood stream.
Don’t worry about reporting something that turns out to be a false alarm – nobody will be upset with you. It’s more important that concerns are raised so that if treatment is needed, it can be given as quickly as possible
When you see your medical team, they will run tests to find out the cause of your infection. They will then decide on the most suitable treatment or monitor your symptoms for longer. Your treatment might be given as tablets, through a drip, or a nebuliser – a device that allows medication to be inhaled directly.
There could also be times when you are given antibiotics even though you have no signs of infection. This is a prevention that reduces the risk of an infection starting. It’s often called antibacterial prophylaxis.
A virus like the common cold doesn't need treatment, but for other viruses you might need to come into hospital to have a nebuliser. If you have a cough, it could be a bacterial infection and you might need antibiotics.
Hayley, Anthony Nolan Lead Nurse.
5.3.4 Prevention of infection
Infections are a natural part of recovery that can’t always be avoided. However, there are things you can do to reduce the risk. Although you might have to make a few lifestyle changes, you still need to live your life and enjoy it. Being aware of your situation and making sensible choices, while still being careful, will hopefully allow you to do the things you enjoy doing during your recovery.
I am not a believer in locking yourself away in your house to try and avoid infection. personally, I think your mental well being is more important, as is building up your physical strength and getting back into society.
Emma, recipient of two stem cell transplants.
5.3.5 In the first six months
General hygiene – Wash your hands or use alcohol gels regularly, especially after using the toilet, handling anything unclean or travelling on public transport.
Contact – Spending time in crowded places and travelling on public transport should be avoided if possible.
Diet – Stick to fresh food that is washed and cooked properly. You also need to avoid food that’s rich in bacteria, such as blue cheese or yoghurts. More information is available in our diet section.
Oral hygiene – Brushing your teeth twice a day, flossing and using mouthwash will help prevent tooth decay and gum disease.
Safe sex – Always practise safe sex by using a condom. You should also avoid any sexual practices that put you at risk of infection.
Pets – Although there are many benefits of caring for your pet during recovery, you will have to be very careful around them too. Always wash your hands after touching them and don’t let them lick or jump all over you. Ideally you should avoid their litter tray/waste completely.
Travel – Avoid travelling to countries or locations where food and water quality aren’t to the highest standards, or where you might encounter tropical diseases. More advice on travelling abroad is available in our travel section.
5.3.6 Long term
Vaccinations – During your transplant your immune system is replaced and you will need to have a new course of vaccinations to protect you from common illnesses such as measles and tuberculosis (TB).
Medication – Your medical team may decide to keep you on prophylactic antibiotics to help reduce the risk of infections developing.
Back to work – Some people return to work about six months to a year after transplant. You’re normally at much less risk of infection at this point, but it’s sensible to take precautions if you can. If you have a job where you’re in contact with the general public a lot, see if you can make changes to your role so you’re less exposed.
Healthy lifestyle – Regular exercise, good diet and vitamin supplements will all help to improve and maintain your general health.
5.4 Graft versus host disease (GvHD)
GvHD stands for ‘graft versus host disease’. The word ‘graft’ simply means your donor’s cells, and the ‘host’ is you.
When you have a stem cell transplant, your donor’s cells will form your new blood and immune system. Your immune system keeps your body safe from infections caused by bacteria, viruses and fungi that are not part of you. It also scans your body’s own cells and removes any that don’t appear to be ‘normal’, such as those turning into cancer cells.
There are still small differences between your new immune system and other cells in your body after you've had a stem cell transplant. As a result, your growing immune system may harm some of the cells in your own body because it sees them as ‘different’. This is called GvHD.
Some GvHD can be a good thing because it means that your new immune system is working and is likely to be attacking any remaining or returning disease. This can be referred to as ‘graft versus leukaemia effect’ or ‘graft versus tumour effect’. However, too much GvHD can cause unwanted complications and side effects. At its worst, GvHD can be life threatening.
GvHD is not yet fully understood and it’s difficult to predict who will get it and who won’t. We know that about half of people who have a transplant will get GvHD. Often, it’s very mild but for some people GvHD can be more severe and can affect their quality of life.
This section looks at the following topics
5.4.1 What types of GvHD are there?
There are four classes of GvHD:
• Acute: Happens in the first 100 days after transplant
• Chronic: Happens after 100 days post-transplant.
• Progressive: When acute GvHD progresses to chronic GvHD
• Overlap: When features of acute and chronic GvHD happen together
Once classed, GvHD is then given a grade which is used to guide treatment and to help monitor improvements. Grading is based on symptoms and the number of organs involved. Some transplant centres slightly adapt the grading system they use, so it’s best to check how they measure yours.
5.4.2 When am I likely to get GvHD?
GvHD can occur at any time, so it’s important to report any symptoms after transplant to your team. However, the most common times to experience GvHD are:
• When your immune cells start to come back and appear in your blood, usually a few weeks after your transplant.
• When the medication that suppresses your immune system is reduced, usually a few months after you go home. The immune cells become more active, notice there’s a difference in your body’s cells and may start an attack.
• If you have a donor lymphocyte infusion (DLI) – this is a top-up of donor cells which can sometimes be given if your new immune system needs a boost.
Some symptoms are quite general and don’t always mean you have GvHD. Your medical team will perform tests that might include biopsies (skin or liver GvHD) or use a small camera to look closely at the organ (stomach or lung GvHD). These tests can confirm the GvHD diagnosis.
5.4.3 What are the treatments for GvHD?
Treatment for GvHD varies depending on the organ involved. It can be broken down into:
• Local - This includes creams for skin GvHD, drops for eye GvHD and physiotherapy for GvHD of the joints.
• Oral - Immunosuppressive medication (cyclosporine, mycophenolate or tacrolimus) will be given before your transplant to suppress your immune system and allow new stem cells to grow. If you develop GvHD, the dose might need to be increased for a while to control your symptoms. Oral steroids may also be used for immunosuppression. Once the GvHD has improved, these medications will slowly be reduced again.
• Intravenous - Might be used if oral medications don’t control the GvHD. This might require an admission into hospital for treatment.
In some cases, acute or chronic GvHD cannot be controlled with these medications so further treatment, such as extracorporeal photopheresis (ECP) or referral to a specialist might be needed.
5.4.4 GvHD in different organs
Symptoms: Acute and chronic skin GvHD symptoms are very similar. Your skin is likely to become dry, red and itchy and it could affect multiple areas of your body. This can affect your appearance, ability to regulate your temperature and lead to infection if the skin is broken.
Treatment: Some cases need no treatment and improve naturally. Mild cases are treated using moisturises or steroid cream. Medication to supress your immune system in more severe cases and treatments such as ultraviolet light and extracorporeal photopheresis (ECP) are possible options.
Symptoms: Gut GvHD could affect your mouth, oesophagus (food pipe), stomach and bowel. Acute gut GvHD usually affects the bowel. You could have sickness, diarrhoea, indigestion, cramping feelings and lack of appetite.
Treatment: Mild cases don’t need treatment but dehydration should be avoided by drinking lots of fluids. More severe cases might need anti-diarrhoea medication, painkillers to ease cramps and anti-sickness drugs to stop you feeling sick.
Symptoms: Your mouth may become sore and dry because you aren’t producing enough saliva. This may lead to ulcers forming and can make your food taste unusual.
Treatment: Visit your dentist regularly if you have mouth GvHD. Practising good oral hygiene and using a steroid mouthwash may also help.
Symptoms: To begin with you might not feel anything but your doctor might find out that something is wrong by testing your liver function. If it becomes worse you may become jaundiced, (yellowing of skin) and your skin may itch. Your liver may also swell in size, causing abdominal pain.
Treatment: Steroids and other drugs to suppress your immune system.
Symptoms: Your lungs can lose some of their flexibility and elasticity, making you feel short of breath, wheezy and prone to coughs and chest infections. You might find exercising becomes more difficult. If you experience any of these symptoms you should contact your medical team straight away.
Treatment: Tests such as lung function, chest X-rays, CT scans and sometimes bronchoscopies (a type of endoscopy that looks inside your airways) to find out what’s causing your problems and rule out infection.
Symptoms: Your eyes may become itchy, dry and uncomfortable or they may water almost continuously. They may also be sensitive to bright light.
Treatment: Referral to an ophthalmology specialist that can prescribe a combination of eye drops, anti-inflammatories or antibiotics depending on your symptoms. Wearing sunglasses may also help.
- Muscles & joints
Symptoms: Restricted movement and pain in the joints of your arms and legs, making tasks such as driving or climbing stairs more difficult. Some patients experience swollen joints.
Treatment: Physiotherapy can improve your symptoms and will involve doing lots of stretches and keeping your joints mobile.
Symptoms: Women may experience vaginal dryness, narrowing of the vagina and ulceration in advanced cases - causing pain and discomfort during sex.
Men may experience sensitivity or a rash on their penis and it could be uncomfortable to pass urine. They may also experience problems maintaining an erection.
Treatment: Women will be referred to a gynaecologist that may prescribe a steroid cream or gel to combat dryness. Men will be referred to a urologist and may also be prescribed a steroid cream to reduce sensitivity.
5.4.5 What is extracorporeal photopheresis (ECP)?
ECP is a treatment used for acute and chronic skin, liver and oral GvHD. It aims to destroy the white blood cells that cause GvHD by combining a medication called methoxypsoralen (8-MOP) with ultraviolet (UV) light.
The procedure involves being attached to a machine that removes your blood through a cannula and drip. It then separates the white cells from your blood, before returning the blood to your body. The white blood cells are then exposed to UV light and 8-MOP to destroy the cells that cause GvHD, and returned to your body.
Treatment can take 1–2 hours. You might start by having two appointments per week, every fortnight. Over time (depending on your response) treatment cycles are likely to reduce. ECP for acute GvHD responds quite quickly, whereas ECP for chronic GvHD can take six months or more before any improvement. In some cases, treatment can last 12–18 months or longer.
Referral for ECP can seem daunting, due to the length of treatment. Sometimes patients delay it as long as possible – but the timing of ECP is crucial for it to be most effective. It’s essential that if your doctor suggests a referral for ECP you consider it carefully. Leaving it too long could reduce the effectiveness of the treatment.
5.4.6 Top tips for managing GvHD
• Report any changes in your GvHD to your transplant team immediately. GvHD can worsen quickly if not treated appropriately. Call your CNS or a member of the team who can offer advice and in most cases prevent the need to come into clinic.
• Take your immunosuppression medication as advised. This is one of the most important medications you’ll need to take.
• GvHD and its treatment can have knock-on effects so you might be referred to other healthcare professionals such as a dietician or physio. It’s important that you follow their advice to prevent weight loss, manage fatigue and maintain fitness.
• Treatment for GvHD can put you more at risk of infection, so report any change in your temperature to your transplant team immediately.
5.5 Hospital visits
Your medical team will continue to check on you regularly to make sure your new immune system is working properly and to monitor any side effects.
Everybody’s recovery is different and some people will need to visit the hospital more often, for much longer into their recovery.
The frequency of these appointments will decrease over time and eventually you will be seen yearly, to check everything is still ok.
5.5.1 Early recovery
After you leave hospital, you will have one or two check-ups with your medical team every week. They will:
• assess your general health and how you are feeling
• look for signs of infections or GvHD developing
• check on other side effects and possibly alter your medication
• test your blood to count your blood cells and check that your liver and kidneys are working well
• flush and clean your central line
• answer any questions or concerns you might have.
5.5.2 Blood transfusions – If your blood cell or platelet counts are low, your medical team may decide to give you one (or more) blood transfusions. This will be more likely in your early recovery.
Depending on the blood cancer or blood disorder you had, you may need to have irradiated blood. This is donated blood that is treated with radiation before it’s given to you – this removes the white blood cells and reduces the chance of you having a reaction to it. Your medical team will give you a card to carry with you so that doctors know to give you this type of blood in an emergency.
5.5.3 Later on...
You will probably have regular check-ups at the hospital but they will happen less often. At three months and one year after your transplant you may also have a bone marrow test (where a small bone marrow sample is taken and analysed) or a PET-CT scan. They are both used to monitor your progress and to confirm that your blood cancer or blood disorder has not returned.
Central line removal – Your central line can risk causing infection, so it will be removed as soon as it’s no longer needed, normally a few months after transplant. Removing it is normally done at the outpatient clinic using a local anaesthetic. You may need a stitch or two to help the wound heal.
Hospital stay – Unfortunately you're likely to have some setbacks in your recovery and you may need to spend some time back in hospital. While your immune system is rebuilding, infections can be picked up very easily. This doesn’t mean that your transplant hasn’t worked – it’s a natural part of your recovery that cannot always be avoided.
5.5.4 Longer term
No matter how long its been since your transplant, you'll always have a point of contact, normally your clinical nurse specialist (CNS) or transplant co-ordinator.
You will have a full health assessment after every year. Your medical team will keep an eye on whether you’re experiencing any late effects of transplant.
Vaccinations – During your transplant your immune system is replaced, which means the vaccines you had as a child will no longer work. You will be unable to have any vaccine that’s based on a live virus or bacteria because they are unsuitable for people with a potentially weakened immune system – these include the TB and MMR (measles, mumps and rubella) vaccines.
Your transplant team and GP will schedule and give your new vaccinations to you. For some vaccines this normally happens at least six months after transplant but others are given after two years.
Your family should also consider having the seasonal flu vaccine every year. It can be given through their GP or local pharmacy.
5.5.5 At other times
There will be times when you need to have certain treatments or procedures. Some of these are important milestones in your recovery that show you are making good progress. Your medical team will try to arrange them alongside other appointments so that it’s more convenient. However, others will only be needed if problems develop.
Specialist appointments – As well as more general health checks, you may also be referred to specialist doctors, who are experts in one type of treatment or part of the body. This often happens if you have GvHD that affects certain organs. You will also be advised to regularly see other specialists such as a dentist, optician and gynaecologist (if you have a vagina) so if any problems occur, they can be treated early.
Donor Lymphocyte Infusion (DLI) – If your chimerism (the proportion of blood cells that come from your donor compared to your own) is low, you could be given a ‘top-up’ of cells from your donor. This simple procedure is very similar to a blood transfusion.
High dependency – At times you may need specialist care on a high-dependency or intensive care unit (ICU). These units offer essential care, support and close observation if you become very unwell.
It’s ok to feel frightened, down or frustrated when returning to hospital – but it will enable your medical team to give you the best possible treatment and support. You can find out more and access extra support in the Recovery: mind section.
5.6 Having a donor lymphocyte infusion (DLI)
This is general information on donor lymphocyte infusion (DLI). It’s important to remember that everyone is individual, and we would always encourage discussion with your transplant team if you have any questions.
5.6.1 What is a DLI?
The immune system is made up of different types of white blood cells (WBC) called lymphocytes – these are the cells which fight infection. A DLI is the infusion of lymphocytes, specifically T-cells, from your donor. T-cells are a type of lymphocyte that can cause an immune response. A DLI is used after a sibling or unrelated stem cell transplant.
5.6.2 When is a DLI used?
There are two main reasons why a DLI would be used:
After a stem cell transplant, chimerism will be measured on a regular basis. Chimerism tells us how much of your bone marrow is from the donor and should be as near to 100% donor as possible. If the chimerism level is consistently low or drops, it means not enough is from your donor and there is a risk of relapse or graft failure (when your donor’s cells fail to develop and grow properly). A DLI is given to cause an immune response which can push the chimerism back up to an acceptable level.
It’s important to remember:
• Not all patients will have 100% donor chimerism and that is fine if it’s stable.
• Your chimerism will be monitored for a period before the decision to have a DLI is made.
• A drop in chimerism does not mean you have relapsed.
Relapse after a stem cell transplant can be treated with a DLI. If the relapse is low level and picked up early in a test for minimal residual disease (MRD), the immune response caused by a DLI can fight the disease and help put you into remission. If relapse is picked up on a bone marrow test or in the blood and there is higher level of disease, chemotherapy will be used first followed by a DLI to help put you into remission.
It’s important to remember:
• A DLI is not always possible as a treatment for relapse.
• Disease relapse can occur with or without a drop in chimerism.
In some cases, if a disease has a higher risk of relapse after transplant, a DLI can be planned in the pre-transplant phase to be given after the transplant. This might be done irrespective of chimerism or relapse but as an extra preventative measure for relapse. This should be discussed with you prior to the transplant.
5.6.3 How is a DLI collected?
When the donor’s stem cells are being collected, if there is enough within the collection a DLI can be removed, frozen and stored. Sometimes there isn’t enough, and all the collection must be used for the transplant. In this situation, if you need a DLI, your donor will be contacted and asked to donate.
A DLI is easier to collect than stem cells, injections are not needed as high levels of lymphocytes are always present in the blood and can be easily collected. However, the donor will still need to agree and have a medical before going ahead.
5.6.4 How is a DLI given?
A date will be discussed with you and, in most cases, the DLI can be given as an outpatient. If chemotherapy is given beforehand as an inpatient, then the DLI will also be given while you are an inpatient. The DLI will be thawed and given to you through a syringe as it is given in much smaller volumes than stem cells. The DLI is normally given in increasing doses over a period of weeks or sometimes months, but this and the dose will be determined by your transplant team.
5.6.5 What are the side effects?
It’s rare to experience side effects whilst receiving a DLI. Occasionally, there is a reaction and a smell from the preservative called ‘DMSO’ which is added when the DLI is frozen. A nurse will be with you throughout the whole infusion and you will be observed for a short time after.
The main side effect is graft versus host disease (GvHD) and this can happen in the weeks following the infusion. Although a side effect, GvHD is the response you want as it suggests the DLI has caused an immune response. The key is to balance GvHD by not causing too much of a reaction, but enough to give the desired effect. Giving the DLI in increasing doses over a period of weeks is a way of controlling the risk.
It’s important to remember:
• If you do not get GvHD, that does not mean the DLI has not worked – a response can be achieved without any side effects.
This will vary depending on the experience of GvHD. Follow up in clinics might increase initially to monitor for symptoms and response, and to decide if another DLI is needed. If the response is achieved and any GvHD resolved, recovery after transplant should continue to be the same as prior to the DLI.
5.6.6 Why wouldn’t a DLI be given?
Every patient is different and the decision to give a DLI will be decided by the transplant team. These are just some reasons why a DLI wouldn’t be a treatment choice, but you should always discuss treatment with the transplant consultant.
A second transplant is the best treatment option
A second transplant will only be considered in the case of relapse or graft failure. There are several factors that will decide if this is the best option, such as the level of relapse/graft failure, time from transplant, age and fitness. This will be discussed with you by the transplant team.
You have already had significant acute GvHD
If significant acute GvHD has been experienced, which means the donor cells from the stem cell transplant have caused a good immune response, but the chimerism has still dropped or relapse has occurred, then giving a DLI to try and cause more GvHD is unlikely to work. This should be discussed with the transplant team, as having low levels of acute GvHD could still mean that a DLI is an option.
You have ongoing chronic graft versus host disease (cGvHD) that is still being treated
Giving a DLI when cGvHD is ongoing and being treated can cause a worsening of symptoms and acute GvHD. As above, if GvHD has already been experienced it is unlikely that a DLI would work.
5.7 Late effects after transplant
Having a stem cell transplant can have a long-term impact on your health and wellbeing, so you will be invited to yearly check-ups where your progress can be monitored. You may also have access to a ‘late effects’ clinic. These services are run by clinical nurse specialists who are highly experienced in the needs of stem cell transplant recipients.
Some of these side effects are more common than others and some will only affect a small proportion of patients. Many of them happen because of the treatment you needed, either before or after your transplant, including the conditioning therapy. Taking steroids to control your immune system and reduce the effects of GvHD can also cause certain side effects, especially if they need to be taken for a long time.
Reading about these long-term effects can be daunting and a little overwhelming, especially if you are preparing for, or have recently had a stem cell transplant. While it’s important to plan for future challenges, you might decide it’s better to focus on your own stage of recovery for now and consider these potential long-term effects later.
This section provides information on the following late effects, listed from the most to least common. It’s important that you know what to look out for and how your team will monitor, screen for and treat them.
5.1.2 Early menopause
You will be at a higher risk of developing skin cancer in later life. This means you will need to protect yourself against the sun’s UV rays. You will need to wear high factor sunscreen and a hat when out in the sun. If you notice any skin changes, particularly in any moles you have, you should have it checked out by your doctor.
Cataracts are cloudy patches that develop on the lens of your eye. They can cause blurred or misty vision and make it difficult to do everyday tasks, like driving. It could take a few years for cataracts to develop, so it’s a good idea to get eye tests regularly. If you had total body irradiation as part of your conditioning therapy before transplant, there’s a greater chance of cataracts forming compared to chemotherapy alone.
If cataracts start to have an impact on your daily life, they can be easily removed with surgery.
There are two main problems that affect your bones.
Osteoporosis (or thinning of the bones) is a common problem for many people as they get older, but it’s more likely to happen after a stem cell transplant. Your risk will also be increased if you needed long-term steroids before your transplant, or to treat GvHD afterwards.
Although it’s generally not painful, your bones become weaker and could fracture easily. A special type of X-ray called a DEXA scan shows the density of your bones and whether you are at risk of osteoporosis.
Fortunately, osteoporosis is often reversible. Being physically active, and taking calcium and vitamin D supplements, can help prevent and treat it. Your doctor may prescribe medication called bisphosphonates that will help too.
Avascular necrosis is when bones in the joints break because of poor blood flow. It’s much less common and mainly affects hip joints, but can also happen in knees, wrists or ankles. It can be very painful and result in difficulty with walking and other activities. Medication can help with the pain but most people with avascular necrosis will need surgery.
5.1.6 Thyroid and other glands
Your stem cell transplant could affect the parts of your body that make hormones, including the thyroid, pancreas and sex glands. This means they will be unable to produce the same level of hormones as before.
Roughly one third of transplant patients have an underactive thyroid (hypothyroidism) in the years after their transplant. It can leave you feeling tired, achy and depressed but is easily treated with daily hormone tablets. The symptoms can develop slowly, so your doctor will perform a thyroid function test at your check-ups. This blood test measures the level of thyroid hormones in your blood.
Diabetes occurs when your pancreas doesn’t make enough insulin, which can cause sugar levels in your blood to get too high. If you regularly feel thirsty, tired and pass more urine than usual, it could be a sign of diabetes. Changing your diet may be enough to control your symptoms but you might also need to take insulin daily. Your medical team will test your blood sugar levels regularly and discuss your options with you in more detail.
It’s also common for the glands that produce sex hormones (oestrogen and testosterone) to be affected, which could impact your sex life. You can find more information and advice in our sex and relationships section.
Some people experience lung problems after a transplant. They can happen if you have chronic GvHD or if you’ve had a lot of infections during or after your treatment. Lung problems can also be related to the conditioning treatment you had before your transplant.
Possible problems include a dry cough that won’t go away, breathlessness that gets worse, wheezing and fever. Your lung function will be tested at your check-up appointments and an X-ray or other scans may be necessary. If your problems are caused by GvHD you might be referred to a specialist.
You should not smoke after your transplant because you’ll be at risk of long-term chest problems and some types of cancer, including mouth and lung cancers.
Heart problems can affect anybody but there’s a slightly higher risk of developing a condition if you’ve had a stem cell transplant. Recent research suggests that around 5-10% of patients experience heart problems in the decade after their transplant.
The initial risk can be reduced through good lifestyle choices, such as a healthy diet and regular exercise. However, you may also be given medications such as beta-blockers or statins to control your blood pressure.
The health of your heart will be monitored at your yearly check-ups. If your medical team thinks you are at risk, they can refer you to a heart specialist.
5.1.9 Iron treatment
It’s possible for iron to build up in your body, especially in your liver, from having lots of blood transfusions. Your body isn’t very good at removing this iron and it can cause serious health problems if left untreated. Your medical team can check your iron levels by measuring a protein in your blood called ferritin. They may decide to do an MRI scan too.
High iron levels can be treated in two ways:
Venesections: This is when a pint of blood is taken from your body to help remove excess iron. It’s very similar to giving blood and will continue regularly until your iron levels return to normal.
Chelation therapy: A drug is added to your blood that is designed to ‘mop up’ excess iron and remove it.
5.1.10 Secondary cancers and cancer screening
There’s an increased risk of developing cancer in later life because of the conditioning therapy you had before your transplant. You will be invited to be screened for certain cancers and you should check for any changes to your body regularly.
6 Recovery: Mind
Leaving hospital after your stem cell transplant can be both a happy and daunting experience. Many patients have concerns about how they will cope with the challenges of their recovery and some find it easier than others.
Your recovery will have an impact on all parts your life and our Body, Mind and Life information sections will help you every step of the way.
Every person’s recovery is unique and these pages are here to help and support you throughout this journey.
The Mind section focuses on how your recovery could affect your mental health – from the emotions you might feel to concerns about body image and memory – and offers help on how to talk about difficult problems. It also looks at how recovery could affect your relationships with those closest to you and how to cope during more difficult times.
You can find more information, support and advice on the following potential challenges:
6.1 Your mental health after a stem cell transplant
There’s no right or wrong way to feel during your recovery. There will probably be times when you’re worried, times when you’re scared and times when you want to cry – but that’s ok. Sometimes it’s reassuring to hear that what you’re feeling is completely normal.
All stem cell transplant recipients experience a wide range of emotions during their recovery, some of which can be difficult to deal with. Not everyone will go through these feelings in the same order or for the same amount of time. The important thing to remember is that you are not alone, your feelings are totally normal, and there’s support available for you.
6.1.1 What you might be feeling
Depression – It’s completely understandable why you might feel low after going through the life-changing process and uncertainty of having a stem cell transplant. Usually these feelings pass in due course but if they come back regularly for a few days at a time, it could be a sign that you're experiencing depression.
Anger and sadness – Both feelings are part of the grieving cycle we go through before we can accept a situation and move on. Grieving doesn’t have to involve the loss of a person – after a life-changing event such as a transplant people grieve for the life they used to have. Every transplant recipient has asked themselves ‘why me?’ at some point.
Isolation – Feeling as though nobody understands what you’re going through can lead to feelings of isolation. Living alone, having family members who are out for most of the day, or having a relatively small social group can lead to similar feelings.
Anxiety – Having lots of uncertainty in your life and not being able to plan for the future can make many people feel anxious.
Hope – When your recovery is going well you feel great and this sense of progress can lead to thoughts of hope and positivity for the future.
Loss – You might feel like you’ve lost the freedom you had before your transplant, especially if you’ve not yet returned to work or had to give it up. You may also worry about losing the medical support you had in hospital.
Determined – Self-managing parts of your recovery, such as your diet and exercise, can help you feel as if you’re regaining control of your situation.
6.1.2 How to have difficult conversations
Talking about mental health problems is often difficult and finding a way to start the conversation can be the hardest thing of all.
When it comes to talking about something that could be upsetting for you, have a think about who you’re most comfortable talking to. For some people it’s a family member or friend, but many people prefer to talk with someone they don’t know as well. This could be a healthcare professional or another member of their community.
Before you start, remember that many people have stresses in their lives that can cause struggles with their mental health. So even if they haven’t had a stem cell transplant, they could still have experience of dealing with similar feelings.
You might find the following ideas helpful too:
• Try to gather your thoughts beforehand so that you are clear about what to say. Writing some notes might be helpful, especially if you’re speaking to a healthcare professional.
• Find a relaxing and quiet place to talk, where you feel comfortable and no one is distracted.
• Expect to be asked questions. You don’t have to answer everything if you don’t want to, but it will help the other person to understand what you’re going through.
Letting someone else know is the first step in getting help and it will feel good to have opened up to someone.
Please remember that the difficult feelings might return, and it might take some time before you feel like you can handle your problems on your own.
6.1.3 Signs of something more serious
A time may come when you feel you need extra support to help you cope. It’s not always easy to tell when this is, especially if you’re feeling low. Your family may recognise this behaviour in you before you do and may want to talk to you about it.
If you start to experience some of the following, you should talk to your GP or medical team, who will talk you through various options including medication and talking therapies.
• You’ve been feeling very low and not like your usual self.
• You can’t find the motivation to do anything, even important tasks.
• You regularly have trouble sleeping.
• You have lots of negative thoughts about yourself, the world and the future.
• You feel unable to control your thoughts.
• You’re feeling much more anxious than usual
6.2 Memory and recognition
Change in cognition (memory and concentration) is a common side effect of a stem cell transplant, but it is not widely discussed or understood.
During your recovery there could be times when you find certain mental tasks more difficult than you once did. This could include difficulty remembering appointments, recalling the names of people or objects, and concentrating in general.
These problems are known as cancer related cognitive changes (CRCCs) because they affect the way we recall and process information. They often go hand in hand with fatigue and many patients find they experience more CRCCs when their fatigue is also bad.
6.2.1 What are cancer related cognitive changes?
‘Cancer related Cognitive Changes’ is a term used to describe changes in a person’s ability to concentrate and think following cancer treatment. These changes are sometimes also referred to as ‘chemobrain’ or ‘chemofog’.
Most people who have cognitive changes are able to do everyday things, but they may notice they aren’t able to do some things quite as well as they did before they had cancer. Changes can often be mild and subtle.
Thankfully, CRCCs aren’t progressive and they do improve over time. However, they can affect your everyday life so this can understandably be quite frightening for some people.
6.2.2 What causes CRCCS?
It is not yet fully understood why these symptoms occur and why they affect some people but not others. Research into the brain activity of people who had cancer treatment found that their brains functioned in the same way as those who had not had cancer treatment, but the brains of the cancer patients had to work much harder to complete the same tasks.
Factors likely to be involved in causing CRCCs include:
• Cancer treatments such as chemotherapy, radiotherapy and antibody treatments.
• High-dose chemotherapy and a stem cell transplant.
• Side effects of cancer treatments.
• Hormone changes caused by cancer treatments, such as an early menopause.
It is thought that 30-40% of stem cell transplant patients will experience cognitive changes after an allograft (receiving stem cells from a sibling or unrelated donor). Patients who have a full intensity transplant (i.e. higher doses of chemotherapy and radiotherapy) are thought to be at higher risk of cognitive changes. The rate is much lower after an autograft (when you receive your own stem cells).
New treatments such as Chimeric Antigen Receptor T-cell (CAR T-cell) therapy can affect cognition in the short term although its long-term effect on cognition is not yet clear.
Further research needs to be carried out to determine what other factors could affect who will experience cognitive changes after transplant and who will not.
6.2.3 What are the effects of CRCCs?
Knowing more about how our brain ‘thinks’ helps us to understand how these changes can affect our memory and concentration. We’ll look at attention, memory and our planning and organisational skills.
Attention is the basis for learning and memory. You must first pay attention to something before you can put it into your memory.
Attention is a limited resource. Think of it as a bucket that can only hold so much. When it’s full it can overflow, meaning we can’t pay attention to things or remember them afterwards.
Our attention can be filled up by many different things such as:
• a noisy environment
• fatigue (extreme tiredness that does not get better with rest or sleep)
• physical ill-health
• stress or anxiety.
These factors can make it difficult to pay attention to things we need to.
Our memory follows many different stages in order to work effectively (attention being one of these stages). We can think of it as a filing cabinet: memories must be filed correctly in order to find them at a later date.
Many factors affect this process of filing and finding memories.
Executive function (planning and organisational skills)
Executive function is one of the most complex aspects of our thinking. It’s like the chief executive or the conductor of our brain. It plans, organises, adapts, directs, weighs up decisions and decides what the priorities are.
The factors which affect our attention and memory also can impact on our executive function.
Experiencing CRCCs can be frustrating. It can have an impact on how you feel, your work and your home life.
It’s important to remember that these changes can come and go. How much you notice them may seem to depend on what you are doing at that time.
You may struggle with things such as:
• remembering dates, phone numbers or names
• concentrating on simple tasks or on
• your work
• making shopping lists, doing puzzles or
• adding up numbers in your head
• finding the right words for things
• following the thread of a conversation
• making plans
• learning new facts.
There is still a lot to learn about CRCCs and it is difficult to predict whether or how you will be affected by it. So, knowing what to look out for is important.
Report any changes you experience in your concentration or your memory to your medical team. This will enable them to give you advice and support, as well as monitor your symptoms over time.
6.2.4 Cognitive coping strategies
Unfortunately, there is no immediate fix for CRCCs. However, coping strategies can be followed which involve doing things in a different way to help compensate for, or work around, any changes in your attention or memory.
This is often referred to as cognitive rehabilitation. Think of this as being similar to following a diversion on a road: it still gets you to your destination and over time this new route will become easier to follow.
The following suggestions are based upon the cognitive rehabilitation approach, to help improve your attention, memory or executive function (planning and organisational skills). They are a general guide to help you find out what works best for you.
Don’t attempt all the strategies at once - try them one-by-one and see what works for you.
• Set up the right conditions by removing distractions.
• Focus on one thing at a time
• Don’t try to take in too much information at once.
• Apply structure or break tasks down into smaller pieces.
• Write things down
• Always keep important items in the same place, such as keys, your wallet, purse etc. This will help your brain to form new habits rather than rely upon your memory.
• Use tools such as a whiteboard, chalkboard or cork board to remind yourself of important things. Add appointments, shopping lists or things to do. Get in the habit of glancing at it every time you enter and leave the room.
• Use a diary or notebook (either paper or electronic) to keep all important information in one place.
• Repetition helps learning, so repeat the information as much as possible. Rhymes, rules or stories can help our memory.
• Making associations with something meaningful or forming visual images helps, such as associating someone’s name with a visual feature like glasses or a beard.
Executive function (planning and organisational skills):
• Use a step-by-step approach with calendars, organisers (paper and electronic) and apps to help with planning.
• Use computers or phones with alarms to help keep you on track.
• Ask for written directions with spoken instructions where possible.
• Keep a notepad handy e.g. in your bag, by the phone or in your pocket.
It can take time to see an improvement in symptoms with CRCCs. Like other aspects of transplant recovery, this may mean that you have to adapt parts of your life.
Although this can be frustrating, using these strategies on a regular basis can help you to manage your CRCCs and improve your quality of life.
Specialist occupational therapists (OT) and psychologists can assess how cognitive changes affect your daily life, and help you plan how to manage symptoms. Not all transplant centres have these specialist OTs or psychologists, so discuss this with your medical team. If it’s an option, a referral can be made.
6.2.5 Wellbeing and its influence on CRCCs
Improving our general wellbeing can help our thinking and concentration. Here are some areas to focus on:
Side effects of treatment and the long period of recovery mean that the psychological impact of a stem cell transplant can be significant for many patients. Low mood and depression are not uncommon, and they can make attention and concentration worse.
Experiencing CRCCs can also feel isolating and distressing. Problems with memory and concentration are difficult to explain. It’s not a visible side effect so it’s not always obvious that you are struggling.
Expectations (from others and those you place on yourself) can cause anxiety and a sense of not being able to cope with everyday tasks. This can affect your mood and confidence which can have an impact on your relationships, socialising and quality of life.
It’s important that you find ways to help calm some of your concerns through the strategies mentioned earlier, and also by talking to your family and friends. This will help them understand and support you.
Talking to your transplant team or GP is also essential as they will be able to discuss the different methods of support available. You can also read more advice in Recovery: Mind.
Fatigue is very common after a stem cell transplant and is one of the side effects that lasts the longest. Fatigue is not just physical but can be mental too, making concentration more difficult. So, managing your fatigue will also help you manage your concentration.
• Fatigue management is about planning your day and prioritising what needs to be done and what can wait.
• Do things at the times of day when you have the most energy.
• Have regular breaks.
• Accept that you will have days when you can do more and days when you need to give yourself a rest.
• There is further advice in our Fatigue section.
Lack of sleep will affect your concentration and memory. If this becomes a problem for you:
• Start to develop a routine before bed to prepare your body for sleep, making it more likely that you’ll get a good night’s sleep.
• Try not to nap too much during the day as this can quickly form bad sleeping habits - have an early night instead.
• Limit caffeine from the afternoon onwards.
• Reduce your alcohol intake.
• Begin to unwind an hour or so before you are due to go to bed by switching off screens and mobile phones.
• Try mindfulness or relaxation techniques.
Diet and exercise
It’s very common to have a reduced appetite after a stem cell transplant and this can take a long time to return to normal. Poor nutrition and dehydration can affect your attention and memory, so improving your diet can also have a positive effect on your cognition.
• Don’t put pressure on yourself to eat large meals – try a ‘grazing’ approach to food, eating little and often.
• Choose foods that have higher calories so you get more energy without having to eat lots. Try full fat milk, cream stirred into soup or cheese on a baked potato.
• If you need an energy boost, try high-protein foods like eggs and cheese. Snacks such as dried fruit and nuts have lots of energy too. Exercise can help with fatigue, sleep, low mood and anxiety, so it can also have a positive effect on your memory and concentration.
• Find exercise that you enjoy and only do what you feel you can manage.
• Ensure it’s safe by checking with your transplant team, especially during your early recovery from transplant.
• Remember: any type of exercise is good - this can be a five-minute walk around the garden or a longer walk around the park, a jog or yoga. It can also include activities such as housework or gardening.
6.2.6 Returning to employment or education
If you are thinking of returning to work or education, talk to your employer or tutor as early as possible so you can keep them up to date with how you’re feeling.
Returning to work and education after a stem cell transplant might be a relief, or a bit scary, or both. Although most employers are supportive in doing what they can to enable your return, the support can vary. Returning to education after a stem cell transplant is a good step in your recovery, but it can also be daunting. Feeling like you have to ‘catch up’ can be overwhelming.
It’s important that you take your time and get the right support. Talk through any concerns you have about your memory or concentration with line managers or tutors. This will enable you both to decide on the best way forward. Even with the best intentions, sometimes it’s difficult for others to understand the side effects of a stem cell transplant and the length of recovery.
If your tutor, employer or financial benefits application requires more information, ask a member of your transplant team - such as your clinical nurse specialist (CNS) - to write you a supporting letter.
6.3 Body image
In the earliest stages of recovery, many stem cell transplant recipients focus solely on their health and whether the transplant has been a success. During this time, you might have found you didn’t have a lot of confidence in your body and that any slight change, blemish or niggle was a sign of something more serious.
As your recovery progresses, these fears of something more serious developing have hopefully lessened, but you may have concerns about how your body looks and responds to physical activity.
Changes to body image are an important part of post-transplant recovery, and they can mean different things to each person. You might not be happy with parts of your physical appearance now or you might be worried about how people will react when they see you again for the first time.
1.3.1 What is body image?
Our body image is the way we think about ourselves and how we think we appear to others when we look in the mirror.
1.3.2 Why has my body changed?
Your body has probably undergone many changes during your treatment and now in your recovery. You were probably expecting some of them, as they affect most transplant recipients, but others may have come as a surprise and can be more difficult to get used to.
You may have already experienced:
Hair loss – Most patients lose their hair shortly after starting chemotherapy.
Weight loss– For a variety of reasons, eating enough food to sustain a healthy weight can be difficult, especially in the first few weeks after transplant.
Skin changes – GvHD can cause skin to become dry, blotchy or develop a rash. Some treatments can also cause scarring.
Weight gain – Long term use of steroids (used to treat GvHD) can cause weight gain.
Some of these changes are only temporary and many patients begin to feel more like their normal self as their recovery progresses. However, some changes, such as those involving fertility and early menopause, can be very upsetting and have a big impact on your future plans. If you have any concerns, it’s important to discuss them with your medical team so that they can provide both practical and emotional support.
1.3.3 Regaining your confidence
When we’re low in confidence, it’s easy to dwell on the things that we think are wrong and forget about the things we like about ourselves, or that are going well.
It might be hard to believe, but you will probably find that people who don’t know you are less interested in your appearance than you might think.
Preparing yourself to be ready for how people might talk to you will make you feel more confident and help you stay in control of the situation. You may find some of the following suggestions useful:
Don’t push yourself – It will take time to feel like you are getting back to normal. At times the thought of seeing people and talking about what you are going through might seem daunting. Start off by seeing a few close friends in a place you feel comfortable, and then slowly build up to bigger social situations when you are ready.
Be assertive – Take control of the situation and only talk about things on your terms. If someone asks you how you are, be upfront and tell them what you would like to say. Try to have the confidence to say you aren’t comfortable talking about certain things and change the subject to something else. You’re in charge.
Comedy – If you feel comfortable making a joke of your situation, it can often help diffuse any awkwardness there might be around certain topics.
Strange questions – Someone, especially a young child, could easily ask an inappropriate question about your appearance at some point. Have a think about how you would want to respond now so that it doesn’t surprise you at the time.
If concerns about your body image are causing you stress and anxiety, you may benefit from talking to a therapist about it. They will work with you to build up your confidence and help you find new strategies that support you in having a more positive outlook.
6.4 Your relationships with others
Having a stem cell transplant can be an intense and stressful time for everyone involved – including your partner, family and friends. Even as you start your recovery, you might find that people react to you differently and the dynamics of your relationships with people change. It’s common to find the roles and responsibilities within your family environment shift, too.
You will probably go through a period when you need to rely on the help and support of others. Adjusting to this lack of independence can be challenging, particularly if you can’t support others like you used to. It might be more difficult to deal with other people’s problems during this time – but that’s completely normal and understandable.
This section looks at the relationships you have with your family and how they might change during your recovery. This will hopefully make you feel more confident with any challenging situations that could arise.
While you’re coming to terms with the changes in your life, the people closest to you will be going through a similar process – they may need their own support too. We have more information and advice for carers in our parents, partners and friends section.
It can be hard to work out why relationships succeed or struggle at the best of times, and your stem cell transplant could make your relationship more complicated. For some couples, a situation like this brings them closer together as they support each other through their difficulties. But there could be times when the stress and anxiety that surrounds a transplant puts a strain on the relationship too.
If you are concerned about your relationship and you feel like you need some help with resolving your problems, have a chat with your medical team. They will be able to put you in contact with a counsellor who you can talk to, either with or without your partner.
Our sex and relationships section has more information and advice for anyone who is having concerns about their relationship or sex life after transplant.
As a young adult, your relationship with your parents can become strained. It’s completely natural because you are starting to gain a sense of independence and rely on them less.
Unfortunately, your parents are probably feeling the exact opposite right now because of your medical condition. Their natural response is to protect their child from harm. They may go too far and become over-protective, perhaps nagging you to take your medicines or stopping you from going out in case you overdo it.
This can be a recipe for disaster, and you might find you argue with them more often. Rows are usually caused by breakdowns in communication, so it’s important to understand how to negotiate and compromise. Remember that even though they might be putting on a brave face, at times your parents are probably very stressed and worried for you. This can make it more difficult to listen and to see your point of view.
Your parents aren’t mind readers, so tell them what you need and what you would like to happen without causing confrontation. However, this goes both ways – if they are insisting on something you don’t agree with, try to see their point of view and suggest compromises.
Whether you’re really close to your sister or argue with your little brother, your transplant will have a big effect on your siblings. Hopefully it will make the bond between you even stronger – but it might be a source of some friction.
Your sibling might have donated their stem cells for your transplant. They obviously did this because they wanted to help, but it can be a stressful situation for them too. All siblings worry if their brother or sister’s transplant is going to be a success – but some of them feel guilty or even responsible if it’s not.
Even if you didn’t receive your stem cells from your sibling, it’s still a tough time for them. They may be disappointed, frustrated or even angry they weren’t able to be your donor. They may also feel unimportant and a little forgotten, especially if they are young and other family members focus on you and your recovery most of the time.
It’s likely you’ll make new friends on your transplant journey. Friendships like this support you in ways that other friends and family might struggle with, because they are experiencing the same thing as you. For that reason, many people form deep, life-long friendships during this time.
While you’re recovering from your transplant, it can sometimes be difficult to keep in contact with your long-term friends. In the early stages of recovery, you might have to limit the amount of time you spend with friends due to concerns about getting an infection, for example.
Some friends will continue to make you laugh and help to support you, but others may find it more difficult. You might find that your relationships with some friends change and become a little awkward. This is often because they are uncomfortable with the situation and worry about saying the wrong thing. If you notice this and feel comfortable doing it, try to encourage your friends to be open and to ask questions about things they don’t understand.
6.4.5 Young children
If you have young children or grandchildren, you may be unsure about how to talk to them about stem cell transplants and life afterwards. It’s generally a good idea to let children know what is happening, but in language they will understand.
6.5 Taking control of your recovery & living well
Being away from the security of the hospital can make some people anxious. They can feel helpless and not in control of their situation. But if you’re home, your recovery has begun and you’re doing well. Now it’s time to start ‘owning’ your recovery. It’s the first step in regaining some independence in your life, helping you to return to a new normal.
Recovering from a stem cell transplant will probably be the hardest thing you will ever do. Remember that you don’t have to do everything on your own and there are many ways other people can help. Living a healthy lifestyle that includes regular exercise, plenty of sleep, and relaxation techniques like yoga will give you the best chance of feeling both mentally and physically stronger.
You probably feel like you already have lots of things to think about when it comes to your recovery.
Remember to give yourself credit for the things you achieve. It’s easy to always look ahead to the next step, the next goal. This might leave you feeling like you’re always striving for something and not quite where you want to be. Take time to notice what you have done and the progress you have made.
Feel free to set as many (or as few) goals as you want and are comfortable managing at the moment. To begin with, it might be something as simple as having a shower and getting dressed.
Here are a few other suggestions to get you thinking:
Exercise – Being active reduces fatigue and improves your physical strength. Exercising and fresh air improves your mental health too. Regular exercise has been shown to reduce stress, relieve anxiety and improve self-esteem.
It's important to not overdo it as your fitness will have reduced during your treatment. Set yourself small goals and build on them gradually over time.
Sleep – Difficulties sleeping and mental health problems often go hand in hand. Many people know that things like stress and anxiety can make sleep more difficult. However, poor sleep can also contribute to a mental health problem starting, or make an existing one worse.
Everybody feels better after a good night’s sleep and it aids your recovery. If you record your sleep, you can look back at when problems occurred. This will help your medical team spot patterns and find ways to help.
Diet – For many reasons, people often lose weight after transplant. But as you recover, your body actually needs more nutrients than usual to help your cells grow and repair. You might decide that you want to eat a certain number of calories per day, or aim to eat five portions of fruit and veg. Eating healthily will help you feel both physically and mentally stronger.
Fluids – It’s important to keep yourself hydrated to aid your recovery. Your body’s cells need water to work, and that includes your brain cells. Try to always have a water bottle with you, so you can drink the recommended amount. It might be easier to drink smaller amounts more often.
6.5.1 Setting reminders
There's always plenty to remember during your recovery so it's a good idea to come up with a strategy to help you keep on top of things.
Appointments – After your transplant, you will need to visit the out-patient department regularly to check that everything is going well and possibly tweak your medication. You’ll also have regular blood tests to measure your blood count, liver and kidney function, and check for viruses.
Medication – Trying to remember which medication to take and when isn’t always easy. Changes to medication will happen and adjusting to a new schedule can be hard. Putting reminders in your diary and storing the details will help make sure you don’t miss any.
Medical team – During your transplant journey you will be at the centre of a large medical team that’s responsible for giving you the best possible care. They will be experts in their field and can help you with anything you need. It can sometimes be difficult to keep track of everybody’s name and what they do, so write down the name and contact details of your team.
6.5.2 Checking your progress
Mental wellbeing – There will be days when you are physically and mentally drained, but there will also be good days when you feel on top of the world.
There are great benefits to recording your emotional wellbeing. You gain a sense of progress, but it also highlights when you need extra support from friends, family or a professional.
Physical wellbeing – Being able to accurately recall when you had certain side effects and how strong they were can help your team tailor your medication accordingly. Get in the habit of recording changes you experience, when it happened and how bad it was, perhaps using a 1–10 scale.
Medical data – Your medical team will regularly count the different types of cell that make up your blood and other factors to check that your new immune system is working properly. These results are recorded every time you visit the hospital. You will be able to monitor your progress by looking at your:
• white blood cell count – the cells that make up your immune system and fight infections
• haemoglobin, which carries oxygen around your body and is found in red blood cells
• platelets, which help the blood to clot following an injury
• chimerism – the number of blood cells that come from your donor compared to your own - the ideal is 100% donor
• temperature, which can be an early sign that you might have an infection
• blood pressure, as transplant patients have an increased risk of high blood pressure.
6.6 What if my transplant doesn't work?
Despite your best efforts and the support of your medical team, family and friends, your stem cell transplant might not work. This could be because your donor’s cells haven’t been accepted by your body, that your original condition has come back or other complications such as Graft vs Host Disease (GvHD).
Your medical team will always monitor you closely so they can address any problems as soon as they start. Even if the transplant hasn’t worked, there are still other treatments available that can help.
This can be a really tough time for you and your family, but your medical team will talk you through your options at every step. During this time, you may want to consider some of the following and the impact they could have on you and your family:
6.6.1 Graft failure
After your transplant, your own immune cells might react to your donor’s cells and start to attack them because they see them as different. It’s also possible that your donor’s cells don’t develop and grow properly because there was a problem with engraftment (when they attach to your bone marrow and start growing).
When either of these happen, it’s known as ‘graft failure’ and it will stop your new immune system from developing.
Your team will monitor your chimerism levels. This measures how well your donor’s cells have engrafted, i.e. how many of your blood cells are being produced by your donor’s stem cells.
A large drop in your chimerism level could be a sign of graft failure and you may need to have a donor lymphocyte infusion (DLI).
If your original blood cancer or blood disorder returns, it’s known as relapse. The risk of relapse is highest in the early stages but reduces after about two years. It’s much more unusual for the condition to come back after five years have passed, but it sometimes can.
Your medical team will check for signs of relapse at your check-ups. This is done using a bone marrow test, where a sample is taken and analysed, or by scanning your body with a CT or PET scan.
It’s good to be aware of any changes to your body or new symptoms and to notify your medical team so they can be checked out.
6.6.3 Treatment options
The next stage in your treatment will depend on many factors including the type of transplant you had, your original condition, age, general health and how well you coped with your first transplant.
Your medical team are likely to discuss some of the following options with you:
Chemotherapy may be given to remove the cells that are causing the blood cancer or blood disorder to return. Chemotherapy is often given alongside other treatments, such as a DLI, or as conditioning therapy before a second transplant.
You will probably be familiar with the risks and side effects of chemotherapy, but they still need to be considered before making a decision on treatment.
Donor Lymphocyte Infusion (DLI)
This might be an option if your disease has returned. A DLI is given to try to achieve a graft versus leukaemia (GvL) effect, where the donor cells attack the cancer cells. GvL often happens with GvHD, and so there will be a greater risk of developing GvHD after a DLI.
It’s like having a DLIfor a mixed chimerism but with two differences:
• If you’ve relapsed, you might have a DLI at the same time as chemotherapy. This will give the DLI a better chance of being successful.
• You might be given a larger number of cells in your DLI. This will give it a better chance of succeeding but also increases the risk of GvHD.
Your medical team will help you decide if a DLI is a good option for you at this stage.
This could be an option if you’ve had graft failure or rejection, or for some people who have relapsed. In some cases, the same donor might be used as your first transplant, but the transplant will be done with different chemotherapy drugs. Unfortunately, a second transplant isn’t a suitable option for everyone.
Clinical trials are a type of medical research study – a way of thoroughly testing new types of treatments. Each trial is based in either one or a few hospitals throughout the country, and will only be able to include certain patients based on their condition and previous treatments. Your medical team will be able to talk about suitable trials with you, when the time comes.
6.6.4 Palliative care
Some people may not be able to have further curative treatment – the risk is either too high, or they might decide to not have any more treatment. However, there is still plenty that can be done to support you at this stage.
Whether you make this choice or it’s made for you, it can be really difficult to face. It’s important that you know all your options, and that you’ve had time to think them through and spoken to your medical team, family and friends.
If you’re not having any further treatment, you may hear the term ‘palliative care’ being used. Palliative care aims to relieve pain and other symptoms. It’s also a key part of end of life care that can provide people with emotional, physical, practical and spiritual support to help them deal with their situation.
Palliative care can be provided at any stage, it’s not just for people in the final stages of life. You might have palliative care for many months or years.
During the palliative phase of your care, you may still receive transfusions, antibiotics and medication to help deal with any symptoms.
6.6.5 Getting support
It’s natural to feel worried, angry or sad about having further treatment. All the feelings you had before your first transplant may come back, perhaps even stronger than before.
It’s important to get support for yourself and your family during this time if you need it. But sometimes you might decide that you want to talk about a problem with somebody who isn’t a close friend or family member.
6.6.6 Coping with loss
Unfortunately, stem cell transplants are not always successful. Over time you may have to come to terms with the death of someone you were close to during your hospital stay or recovery. This is never easy to cope with and it could be a particularly emotional time for you, especially if you are also experiencing complications with your own recovery.
There is no right or wrong way to deal with your feelings, but it’s not a good idea to ignore them in the hope that they will go away. Try to find a way to express your emotions because it will help you come to terms with how you are feeling. Sometimes writing things down can be a useful release. If you would like to talk to someone, your transplant team can organise a counsellor for you.
6.7 Coping with mental health issues
Your recovery from your stem cell transplant will be a unique and very personal experience that’s likely to have many ups and downs. There will be challenging moments that you could find difficult to cope with. This is a perfectly normal part of your recovery that every patient goes through. Trying to accept this and finding the best way to manage these feelings will make things easier. It will make you more resilient and give you a better chance of coping with a set back next time.
It’s impossible to say what will work best for you and some things may work better than others at different times. It might be a good idea to think about the things you did to help you get through other tough points in your life. You might find that they come in useful again during your recovery.
In this section we have made some suggestions that could help you:
6.7.1 Lift your mood
Treat yourself – What you’re going through isn’t easy, so enjoy the little things in life. Buy that slice of cake when it tempts you, go out for a nice meal or do something you have always wanted to do, whatever takes your fancy.
Have a laugh – Everybody has something that always makes them laugh, so get yourself your favourite DVD boxset or search the online streaming services. You could ask your friends for their comedy recommendations too.
Music – Make a playlist of your favourite songs that always lift your spirits.
Travel – Is there somewhere in the world you have always wanted to visit? Now might be the perfect time to go on that trip. You should check with your medical team that it’s safe for you to travel before you go.
6.7.2 Take control
Find out more – Some people worry about the unknown, and finding out more information about the challengers of recovery can make it easier to come to terms with.
Stick to information sources you know you can trust and try to avoid simply relying on internet search engines such as Google. If you have any concerns, you can always ask your medical team for advice as well. Feel free to make notes about what they say or ask someone to come with you for support.
Get organised – There are many things to remember during your recovery, so try to settle into a routine. You will have days when sticking to your plan is more difficult but if you feel like you are doing something positive and that you’re in control, it will help.
Talk to someone – As the old saying goes, ‘A problem shared is a problem halved.’ Sometimes simply talking to someone close to you can make a huge difference. Some people also find comfort in talking to people within the community, such as religious leaders.
Deep breath… – It might sound simple but taking a deep breath can really help calm your nerves. Practicing controlled breathing will also help you to relax.
Meditation – You might already be familiar with the idea of mindfulness or other types of meditation as a relaxation technique. Meditation can help you become more aware of your feelings and accept them for what they are. This allows you to think more clearly and react in a calmer way when things start to get tough.
Health promoting exercise – Techniques such as tai-chi and yoga nidra combine gentle movements, stretching and breathing exercises with elements of meditation. This helps you to focus your thoughts on the here and now and relax your mind.
6.7.4 Focus on something else
Friends – Spend time with people who make you laugh to help take your mind off your current situation. Sometimes it can be easier to be around people who aren’t quite as involved with your recovery as your immediate family.
Learn a new skill – A wide range of courses can be taken through night schools or online including cookery, art and languages. You might even decide to re-train for a new profession. Distance learning courses, such as those run by the Open University, can be a good way of doing this without the need to move or commute.
Social groups – If you have a particular interest, there could be a local group set up for people to share your hobby. Have a look on social media to find out what’s available in your area.
6.7.5 Express yourself
Blog – Some people find it therapeutic to write about their experiences, both good and bad. Even if you don’t want to share your thoughts with others, writing them down can still help you to process them. You may also find comfort in reading the stories of other people who are going through a similar experience.
Art and hobbies – Some people find it hard to express their thoughts and feelings with words but find it easier to use other creative outlets. Drawing, painting, sculpting, poetry and creative writing can all help with this process.
Singing – Local choirs and other musical groups can be a great way of doing something you enjoy and meeting new people.
6.8 Talking therapies
There could be times in your recovery when you feel down or find it hard to cope with the impact it’s having on you.
Many people turn to family and friends for advice when things get tough, but you might also benefit from trying a talking therapy. Your therapist will give you time and space to be heard and help you think about your situation differently. It might not make your problems go away but it should make it easier to deal with them.
You don’t have to wait until you feel overwhelmed before seeking help. Talking therapies can help anybody at any time. Being able to recognise your feelings and process them in a controlled way might even help you avert a crisis before it begins.
Talking to a therapist should form part of your bigger strategy for looking after your mental health. Living a healthy lifestyle that includes regular exercise, plenty of sleep and relaxation techniques will give you the best chance of feeling both mentally and physically stronger.
This section will address the following questions:
6.8.1 What are talking therapies?
When we experience difficult times in our lives it can be easier to talk to someone we don’t know, rather than our friends and family. When we talk to a trained professional about our feelings and how we react to them it’s called a ‘talking therapy’. You might hear this type of support referred to as ‘counselling’ or ‘psychotherapy’. They roughly mean the same thing, when we talk through our problems with someone. However, they can also be used to describe certain types of talking therapies.
Here we stick to the general terms talking therapies and therapists.
Each session with your therapist will be a one-to-one conversation lasting about an hour. They will ask you how you’re feeling and what is making you feel that way. They will discuss how you react to these feelings, help you come to terms with them and change your behaviour, so that you feel more in control of your emotions.
6.8.1 How can I get the help I need?
If you would like to try a talking therapy, your medical team or GP can refer you.
6.8.2 What are the different types of therapy?
Many talking therapies have been developed to help people in different situations that could be either stressful or upsetting.
There’s no right or wrong answer for which will be best for you because everybody and their personal situation is unique. Your therapist may decide to use different aspects of these therapies at the same time – if they feel that it would help.
You might not even be aware which techniques are being used because your therapist will change their approach to best suit your needs.
Cognitive behavioural therapy (CBT)
On the simplest level, CBT has two main focuses – what you think about (cognitive) and how you react (behaviour).
When we have negative thoughts, we tend to react in a certain way, which can in turn make us feel worse. CBT is about learning to identify and challenge unhelpful or inaccurate thoughts and beliefs and so can be very helpful for many stem cell transplant recipients during recovery.
CBT helps you recognise when you’re having negative thoughts and develop coping strategies, so you can act in a more balanced way. At first these new strategies may feel unnatural, and it can take effort and commitment to start using them more regularly. Your therapist will work with you on this and set you goals to work on between sessions.
In a counselling session, your therapist will listen to your concerns and how you are feeling without judgement. They won’t tell what you should do to make things better, but they will work with you so that you can find your own solutions to your problems.
Counselling can help you cope with a variety of situations including depression, anxiety or difficult medical complications that you might be experiencing, such as fertility or body image.
Counselling doesn’t have to be done face-to-face, it can be done over the phone or online if you prefer.
Sometimes simply being around other people going through something similar is reassuring. It helps you to realise that how you are feeling is completely normal and can put your experiences in context of other people’s. You might also pick up some tips about coping with your condition that you hadn’t thought of before.
Local support groups are often set up by the hospital or through charities and organisations.
6.8.3 Finding the right person to talk to
Just as your own personal situation is unique, so is the relationship with your therapist. You will find you get on better and have more in common with some therapists than you do with others. Talking therapies are of most benefit when there’s a connection between you and your therapist and you are comfortable enough to trust and confide in them.
Research has shown that patients benefit the most when their relationship with their therapist is stronger. This means it’s really important that you have the confidence to speak out when you think it isn’t working out. There’s nothing wrong with asking to see someone new if it would help you more. Your therapist may even suggest it themselves if they think someone else would be better suited to you.
6.8.4 What if therapy isn't for me?
Although talking therapies help a lot of stem cell transplant recipients during their recovery, they aren’t for everyone. Some people try them and find no real benefit. There’s nothing wrong with this and it certainly isn’t your fault. It could have simply been that the timing wasn’t right or that another approach would suit you better.
There are alternatives to talking therapies that you might want to consider, including:
Medication – Sometimes, certain medications can help with the symptoms of mental health problems, particularly depression and/or anxiety. Medication usually doesn’t ‘cure’ a mental health problem but can help you feel you are managing things better.
Often, they can work well in combination with talking therapy. Sometimes medications will have side effects, so make sure you get all the information you need first and talk through your options with your medical team and close family before deciding.
Self-help – If you like the idea of talking therapy but would prefer to not talk to a therapist for any reason, it’s possible to give it a go on your own. A variety of self-help books and online information will guide you through the process at a pace you are most comfortable with.
6.9 Charities that support you & your mental health
Nobody expects you to deal with everything on your own. There are lots of charities and other organisations that offer support in a variety of ways to help you during your recovery.
We have outlined some of the services provided by us and other national charities, but there are many others organised locally.
6.1.1 Local support groups
Many patients often feel isolated during parts of their recovery because nobody around them truly understands what they are going through. Although your friends and family will be as supportive as they can, it’s not the same as talking to someone who is going through the same thing.
7 Recovery: Life
When you leave hospital following your transplant it can take time to adjust, and many patients talk about getting back to a 'new normal'. While recovery is relatively straightforward for some patients, it can be very difficult and demanding for others.
We have grouped out information on recovery into three simple sections: Body, Mind and Life. This is because your recovery could affect many aspects of your day to day life.
Every person’s recovery is unique and these pages are here to help and support you throughout this journey.
The Life section focuses on how you can get yourself back to a new normal after your stem cell transplant. It has information and advice on a wide range of topics that are important for your recovery, including exercise and diet. You can also learn about the financial support that is available to you and how to prepare for your return to either work or education.
You can find more information, support and advice on the following topics:
7.1 Diet after a stem cell transplant
Almost all stem cell transplant patients will experience side effects that make eating and drinking more difficult. It’s a perfectly normal part of recovery, but it’s important to be aware of the challenges you could face and how to cope with them.
Your needs are likely to change over time. In the beginning, your focus will be on maintaining your current weight and finding the foods that you can eat easily. During this time your body needs more energy and nutrients to help repair and create new cells.
As your recovery progresses, you can start to make your diet healthier, which will help in the long term.
We have suggested some basic tips that you will hopefully find useful. They won’t all be relevant to everyone all the time, so pick and choose the advice that you think is best for you. If you would like some more specific advice, you should talk to your clinical nurse specialist or a dietician at your hospital.
This section looks at the following:
7.1.1 Food and safety advice
After your stem cell transplant, it will take time for your new immune system to develop properly. This period is described as ‘neutropenic’ because your white blood cell counts will be very low. You will be at risk of picking up infections from many sources, including your food, but lots can be done to help prevent it.
Your medical team will guide you on the types of foods that should be avoided when you come home. It will generally follow a diet that reduces the chance of picking up an infection from foods such as blue cheese or undercooked meat.
It’s impossible to remove all bacteria from food but being careful with the way you clean, store, prepare and cook your food will reduce the risk of infection. The following tips are a good start to improving and maintaining food hygiene:
• Always wash your hands and kitchenware. Wipe down surfaces with disinfectant or sanitiser before and after preparing food and change your dishcloths regularly. This is extra important when handling raw meat or fish.
• Buy food in individual-sized portions or smaller containers. This means they will be open for less time before they are used up. It’s also better to avoid leftovers or re-heated food too.
• Stick to ‘best before’ and ‘used by’ food labels – never eat anything that is out of date.
• Only eat in restaurants or get takeaways from places you’re familiar with and that you know have good hygiene standards.
7.1.2 Diet tips
In general, advice about the food you eat will change at different points during your recovery and will depend on the side effects that you experience. Some of these tips might seem to go against healthy eating, but you can focus on this when your weight and energy levels are approaching where they were pre-transplant.
• have a sore mouth: try ice chips, lollies and ice cream to soothe the pain - soups and other soft foods are easier to swallow too
• feel sick: eat dry, simple foods, and avoid greasy, fatty foods
• have constipation: eat high fibre foods and drink plenty of hot drinks
• have diarrhoea: eat plain food and replace lost fluids
• need an energy boost: try high protein foods like eggs and cheese -snacks such as dried fruit and nuts have lots of energy too.
7.1.3 Eating habits
Your relationship with your food can be just as important as what you are eating, especially if difficulties with your diet have started to make you feel anxious or stressed. It’s perfectly normal to find it hard at times but changing the way you eat could make a huge difference to how you feel and improve your recovery.
Little and often – Nobody says you must eat three meals a day, and it can often be challenging to eat a full meal all at once. Try eating smaller portions more often, so that things are more manageable.
Cravings – Eat what you want. If you feel like you can only eat certain things, just go for it! It’s better to choose something you know you can eat, rather than struggle with something because you think you should.
High calories ¬– Choose food with more calories in to give you more energy without having to eat lots. Try having full fat milk, cream stirred into soup or cheese on a baked potato.
Quick options – Plan meals that can be prepared quickly and easily, so if you can’t manage to eat them it doesn’t seem like a waste of time and effort. But try to not plan too far ahead – when your appetite is poor, it’s easier to take things day by day.
Avoid distraction – Eat at the table rather than in front of the TV. Concentrating on your food will help you enjoy it more and feel fuller.
Aid digestion – Stick to foods that can be eaten with little chewing, or use a sauce or gravy to make food easier to swallow. Sit upright for 10-15 minutes to help your food settle and avoid indigestion.
7.1.4 Maintaining a healthy lifestyle
As your recovery progresses further, it’s still important to lead a healthy life, which includes a well-balanced diet. This will help keep you mentally and physically fitter and reduce the chance of certain health problems developing.
Many patients ask about things they can do to help prevent their illness returning, or secondary cancers developing in later life. A quick internet search will give you many suggestions about how this can be done. Some of them will be based on scientific evidence, but worryingly many are not and should be avoided.
The World Cancer Fund promotes eight key recommendations that all cancer patients should follow to help reduce the risk of complications in later life. Following these points will not guarantee that everything will be ok, but they will make you feel fitter and healthier. The organisation regularly updates these recommendations as new research becomes available.
It currently recommends to:
• maintain a healthy weight and ideally have a body mass index (BMI) of 18.5-25
• be physically active
• follow a plant-based diet, including lots of wholegrains, fruit and vegetables
• limit red and processed meat
• limit fast food and processed foods, including those high in fats, sugars and salt
• limit sugary or sweetened drinks
• limit alcohol consumption – no more than 14 units of alcohol in an average week, but your
• avoid supplements – it’s better to get the vitamins and minerals you need naturally from your diet, and supplements should only be taken when recommended by your doctor.
7.2 Exercise and keeping active
After a stem cell transplant, keeping active can help you both physically and emotionally. Making exercise a part of your daily routine is a great way to combat fatigue, rebuild strength and balance, as well reduce the risk of heart disease and osteoporosis (when your bones become weak and fragile).
In this section we will look at the different types of exercise you can do at all stages of your recovery – starting with your first few days in hospital. It will focus on the following topics:
7.2.1 How and when should I start?
If your medical team agrees, you should be able to try a few very simple exercises in your hospital bed. If your hospital has a physiotherapist, they can give you some suitable exercises and stretches. As your recovery continues, your physio will work with you to increase your physical activity and progress your exercise programme.
Focus on maintaining functional movement to begin with, like walking and moving regularly, building up gradually. You will probably find it more manageable to break down activities into small chunks with some rest in-between.
7.2.2 Keeping active
Physical activity can include exercises as part of a home or gym programme, playing organised sport or simply doing tasks around the house or garden. You don’t have to join a gym or an exercise class if you don’t want to. It’s best to build physical activity into your everyday routine. It’s often easier to stick to something you enjoy, that doesn’t need much effort or planning.
As recovery progresses a structured exercise programme should cover four key areas – aerobic, resistance, balance and flexibility:
Aerobic – Anything that increases your heart and breathing rate. You could try walking, jogging, cycling, dancing or a team sport.
Resistance – Carrying the shopping and doing housework will make your muscles stronger. You could also lift weights in the gym, but make sure you start gently and build up slowly.
Balance – Activities such as yoga or tai chi will strengthen the muscles that help you balance. Even simple activities like standing on one leg can help too.
Flexibility– Regularly stretching muscles and moving joints will make you more supple and reduce any aches and pains. Yoga, tai chi and pilates will improve your general flexibility.
7.2.1 Making progress
Once you’ve got yourself into a routine, try to stick to it and build on your progress slowly over time. If things start to get a little boring, you can always mix things up a bit or introduce a new activity.
Although it’s good to have a long-term goal that you can strive to achieve, aiming to do something like a long distance run or swim might seem impossible now. If you start by walking to the end of your street, then into town or for an increasingly longer time, you will probably be surprised by how you can push yourself each time.
It is recommended that adults should do at least 150 minutes of moderate physical activity or 75 minutes of vigorous physical activity each week. Strengthening activities that work most of the body should also be done on two days per week. It’s also advised to reduce extended periods of sitting.
As a guide, moderate level activity includes things like brisk walking or cycling where you can still talk, but you can't sing the words to a song, whereas vigorous exercise makes you breathe hard and fast. If you're working at this level, you won't be able to say more than a few words without pausing for breath.
These guidelines may not be achievable at the start of your recovery – but that’s understandable. They should be a long-term goal that you build up to gradually over time.
7.2.3 When it's not safe to exercise
In general, if you are recovering well, it’s safe to do light or moderate exercise. There could be times, especially in your early recovery, when your blood counts are very low. It’s probably best to not exercise during this time, but your physiotherapist, or another member of your medical team, will be able to give you specific advice.
Exercise should also be avoided if you start to feel unwell in any way. Possible signs of illness or an infection include:
• having a temperature
• vomiting or diarrhoea
• a persistent headache
• aches and pains
• dizziness or feeling faint.
If you start to have any of these symptoms, you should discuss them with your medical team straight away.
7.3 Managing your finances
If you’ve had to take time off work, it can lead to anxiety around money and being able to pay your bills. It’s one of the main reasons why some people return to work earlier than they really should after their transplant.
7.4 Returning to work
Working after a stem cell transplant may be a big milestone in your recovery. It can be an important part of making you feel ‘normal’ again and a different focus away from the medical world. Some people find going back to work stops them feeling low and boosts their confidence.
Returning to work isn’t always straightforward. You’ll be recovering physically and emotionally from major treatment. You may need to make changes to the way you work and take things gradually. Going back to work isn’t always possible or right for everyone. The good news is that there is practical support and advice that can help.
7.4.1 Preparing to go back to work
As your recovery progresses you might start to think about what going back to work will be like. This can feel exciting, but also daunting, especially if you’ve been away for a long time.
Keep in touch
Keeping in touch with your employer and work colleagues will help you feel like you’re returning to your old routine. It’s helpful to start doing this as soon as you feel ready to. You could send a monthly email, speak on the phone, or have face-to-face catch ups. Some people ask to have internal newsletters or updates about the workplace so that they can keep in touch with what’s going on. Others pop into work and meet up with colleagues and friends. It's up to you.
It can help to think through what your role involves and what you’re able to do as you start thinking about your return. It’s possible that you won’t be able to do as many hours to start with or as many of your job’s tasks at this early point. This is completely normal. It’s important to do things at your own pace.
You might find certain mental tasks more challenging as you get back into the swing of things. Taking notes, making lists, using a diary, calendar or phone apps could help you keep track of tasks and make you feel more in control. Remember, you are likely to find being back at work physically tiring. Taking regular breaks throughout the day and going for a lunchtime walk can help stretch your legs and re-energise you.
Make a plan
It’s a good idea to sit down with your line manager and someone from HR to set out a ‘return to work’ plan. This will help make the process as smooth as possible for you. It might include talking to an occupational health specialist (either through work or your hospital) for some expert advice on what you will need. It’s important that the plans are flexible and can be adapted as you recover and get stronger. Your return to work should move at your pace and be sustainable for you in the long term.
Your work colleagues might assume that now you can work again, you are now fully cured. If you are concerned about people’s expectations of you when you return, you could show them our information My friend is having a stem cell transplant. This will give them a better understanding of what you’ve been through and how they can help you day to day. You could also discuss your concerns about how colleagues’ expectations can be managed when talking about your return with your employer.
7.4.2 Support from your employer
Your employer should consider making ‘reasonable adjustments’ to your role to support you at work. Many employers won’t have experience of supporting an employee who’s had a stem cell transplant. They may not realise that your recovery continues beyond your return and you may have ongoing medical concerns as a result.
You know yourself and your job better than anyone, so think about what would make it easier. It’s really important to update your employer on a regular basis. If your situation changes, your employer can only react if you tell them what you need.
What counts as ‘reasonable adjustments’ varies and depends on the work you do. Here are some examples of the support they may be able to offer you:
• A reasonable amount of time off work for hospital stays or appointments. Flexible working hours can also make appointments more manageable.
• A phased return to work, where your working hours, or the tasks you do, are reduced at first and build up over time.
• Changing your duties if your job puts you at risk of infections. For example, could you work in an office rather than interacting directly with the public?
• Working from home, perhaps two days a week.
• Workplace adaptations such as moving your desk so you don’t have to walk as far or offering you a workplace assessment to check your desk set up is correct.
Your rights as a worker
It’s illegal for your employer to discriminate against you or treat you less favourably than others because of your medical situation.
If you think you are being treated unfairly, it’s important to take appropriate action straight away. It’s possible that some problems happen due to a misunderstanding and can be resolved by talking it through with your employer. If it’s appropriate, talk to your HR department.
If the problem is more serious, you might need the help of an independent body to mediate the situation. If you are a member of an employment union, they may be able to support your case too.
If you are self-employed, your return to work could cause unique challenges and concerns. Without the potential safety net of sick pay or pension scheme, you may feel forced to return to work earlier than you should to provide an income. It may not even be possible to return because of the work you do. You may experience feelings of loss if you have to give up something that has taken time and effort to build up.
7.4.4 Make a change?
After their transplant, some patients reflect and think about doing something new, or make changes in their life. This could affect your financial and family situation, so take your time and discuss your thoughts with family and friends. You can speak to your transplant team about it too. Some things you could think about:
• Would it be possible to work part time at your current job or find a similar job that allows it?
• Are you able to give up your job or take early retirement? If you are a career-driven person, you might need to consider how it would feel to not have work as part of your life. You might need to think about what you will do with the spare time before making any big decisions.
• When looking for a new job, you don’t have to tell a new employer about your medical situation. If you are qualified and physically able, it should not be a problem. If you see the disability confident symbol in an advert, you can be sure they don’t discriminate against anybody. Note: if you don’t make an employer aware of your medical situation you won’t be able to ask for reasonable adjustments or claim discrimination later, if you need to.
7.5 Returning to education
Just like when you left hospital, your return to school, college or university is a big step in your recovery. This can feel exciting but also daunting, especially if you’ve been away for a long time. However, preparing for your return will really help. Although it might be tough, it’s important that you tell your teachers about your condition so that they can support your needs. At the end of the day, if you don’t tell them, it’s very difficult for them to help you.
7.5.1 Plan your return
Going back to education following your stem cell transplant does not necessarily mean you should begin full-time straight away. Your transplant team will help you decide when it’s ok to return. Your recovery is a gradual process, so ease yourself into it slowly. You may be able to do some work at home or attend part-time. Try to build up your workload slowly, so you don’t feel overwhelmed.
7.5.2 Break the ice
You might not have been able to see your close friends very often during your recovery, either because you were too far away, you chose not to or because they weren’t sure what to say. It’s also possible that your appearance has changed since you were in school or college. To make yourself feel more comfortable, you could organise to go out with your friends for a catch up before you return or, if you don’t feel up to that, invite them to your home for a chat.
Take this opportunity to tell them as much (or as little) about what you are going through as you feel comfortable with.
7.5.3 Talk to your teachers
Before you return to your studies, it’s a good idea to get in contact with your teachers to let them know how you have been getting on. Although they will know why you had to take time off, they may not be aware of your needs during your recovery.
This is the perfect opportunity to think about what could be done to make your return easier. It’s important that they know there could be times when you have to attend medical appointments or feel too unwell to study. You may want your tutor to talk to your classmates about what has been going on, so that you don’t get overwhelmed by everyone asking you the same questions. If you prefer, you could ask your parent, guardian or friend to go along with you.
7.5.4 Moving away
If you are about to start university or return to your studies after your transplant, then potentially living a long way from home can provide its own set of challenges. Make sure you have a good support network in place, and that the people you live with know who to contact in an emergency. You should also try to move your appointments to a local hospital and register with a GP that has access to your clinical records.
It’s a horrible thing to have to talk about, but some people might use what you have been going through to make fun of you. If this happens, talk to an adult you can trust and get help – you should not have to put up with this alone. Although it’s not an excuse, some people react this way because they are nervous and don’t understand your situation. You might want your teacher to talk to your classmates about what you have gone through before you return.
7.6 Travelling abroad
When thinking about travelling abroad, a lot will depend on where you want to go and what you want to do. A few relaxing days on the beach in Spain is a very different holiday to back-packing across Asia.
As a general guide, you will probably be safe to travel 6-12 months after your transplant. However, it will depend on how well your own recovery is going, so you should always talk through your plans with your medical team to get their advice.
You might find it easier to go on a few shorter trips or city breaks first, to see how you handle things, before booking a longer holiday.
Before you travel to any country you should consider the possible risk and the precautions you might need to take. You should also talk to your GP or medical team about your plans, so they can give you the most up to date and specific advice possible.
During your transplant, your immune system is replaced, and you will need to have a new course of vaccinations to protect against common childhood illnesses like measles. Your GP or medical team will arrange these vaccinations for you.
If you travel to certain parts of the world, there’s a higher risk of picking up illnesses that aren’t normally found in Macedonia. So, you might need extra vaccines to protect you. This is often the case when travelling to parts of Africa, South America and Asia.
Vaccinations can take a few months to start working properly so you will need to talk to your team in advance, otherwise you may have to delay your plans until it’s safe for you to travel.
Vaccines work by tricking your body into thinking it has come into contact with the real virus or bacteria that causes the illness. They make your immune system react, start producing antibodies and build up your immunity. So, if you encounter the infection again, it can’t harm you and make you ill. Vaccines are made from viruses or bacteria that have either been killed or modified to make them safe.
Any vaccine based on a virus or bacteria that is still alive can cause complications when given to people with weakened immune systems, like stem cell transplant patients. As a result, certain vaccines won’t be suitable for you, which could limit the countries you can safely travel to.
7.6.2 Travel insurance
People with a diagnosis of cancer, or who experience ongoing health concerns, often find it difficult to find suitable travel insurance. You may have to pay more for your cover upfront or have a larger excess to pay if you claim. Some companies may even refuse to insure you.
It’s always best to be honest and upfront about your situation so you have the peace of mind of being covered properly – just in case something goes wrong. If you are travelling outside Macedonia and need medical care, it could cost a lot, so adequate insurance is essential.
7.6.3 General tips
• Always travel with your important documents and details of your medical situation, in case they are needed in an emergency. Any information about the medications you are taking would also be useful. If possible, it should be written in the local language as well. Make sure the people you are travelling with have access to everything too.
• Ask your medical team to write a letter outlining your medications as you may need to carry some liquids or lotions in your hand luggage. It will need to be taken on board and kept with you at all times.
• High factor sun cream, sunglasses and avoiding direct sunlight will all help reduce damage caused by the sun’s UV rays. After your stem cell transplant, you will be at a higher risk of getting skin cancer, so you need to protect yourself.
• If you are travelling to a place where the drinking water might be unclean, you should stick to (untampered) bottled water and other drinks.
• Only eat food that you are confident has been washed, prepared and cooked hygienically.
• Insect repellent will reduce the risk of picking up a virus or other infection from an insect bite. If this does happen and you are concerned, seek medical advice straight away.
7.7 Try something new
You may decide that you would like to try something new after your transplant. Your priorities in life could have changed or you might just want an excuse to get out the house! Some people decide they want to give something back or help other people going through a similar situation.
Here are a few suggestions that you might want to try. Just remember, it’s up to you what you do – just don’t push yourself too far and overdo it.
• Write a blog – Some people find it therapeutic to write about their experiences, both good and bad, and enjoy sharing them with others. However, others don’t like the idea of putting themselves on public display, so only share if you are comfortable doing it. Online blogs can be set up and maintained for free using web platforms like Blogger or Wordpress.
• Find a new hobby – You might find you have some spare time on your hands during your recovery. There are plenty of things you can try such as painting, reading or other crafts. You could also meet new people and socialise through local groups or evening classes. Many of these groups have a presence on social media so have a look at what’s available locally.
• Play a sport – Whether it’s restarting an old sport or trying a new one, being active will boost your recovery. It doesn’t have to be anything too competitive, but regularly socialising and exercising through something you enjoy will help improve your mental and physical wellbeing. You should be able to find something at your local sports centre or through social media.
• Change career – For a variety of reasons, it might not be possible to return to the same job after your transplant. Some patients take this opportunity to think about what they would really like to do instead. It might involve applying your skills to a new situation, or taking some time to retrain for something new.
7.8 Going out, drugs and alcohol
We don’t want to tell you how to live your life, but certain choices could affect your recovery and make it more challenging.
7.8.1 Can I still go out and enjoy myself?
Yes. Doing the things you enjoy and socialising with friends and family are essential for your mental wellbeing. It’s important to enjoy yourself when you can, so that you start to feel like you are getting back to the life you had before your transplant.
However, your medical condition will have a bearing on what you can do, and the risk of you picking up an infection will need to be considered. You might find that you tire easily, and that you still feel tired the following day. Try to plan your social life accordingly. If there is something you would really like to do, give yourself plenty of time to recover.
7.8.2 Will I still be able to drink alcohol?
Drinking alcohol is an important part of socialising for many people. Unless your medical team tells you otherwise, there’s no reason why you can’t still enjoy a drink but it’s best to be sensible and not overdo it. Hangovers are nasty at the best of times, so try to avoid them. You will probably find that you can’t drink as much as you could before your transplant and that it takes longer to recover.
Both men and women should not regularly drink more than 14 units of alcohol each week.
7.8.3 If I continue smoking, how will it affect my health?
It’s common knowledge that smoking is bad for your health – it causes cancer and reduces your lung function - but it also alters the way your body reacts to medicine. This could mean that the immunosuppressive drugs and medications that you’re taking don’t work properly.
There are many other benefits to giving up smoking including the money you will save and preventing close family and friends from inhaling second hand smoke. We won’t tell you to stop but you might want to consider cutting back, or to stop using them completely in the short term.
7.8.4 If I use drugs, how could it affect my health?
Recreational drugs can stop your medication from working properly and could seriously damage your recovery. They can also have a negative effect on your state of mind, which can make it more difficult to cope with any problems you might be experiencing.
You must be honest with your medical team about what you take and how often. Nobody will judge you, but your choices could have a serious impact on your health and how your body reacts to medication. It could also increase your risk of infection.
7.8.5 Do you recommend alternative medicines or therapies?
We can only recommend that you follow the advice of your medical team or GP. The advice we give on our website and in our patient resources is based on clinical research and has been approved by medical professionals.
However, there are alternatives (spiritual healing for example) that some people feel passionate about and believe can bring benefit to their recovery. If you want to explore one of these options, you must discuss it with your team first so that they can check that it’s safe.
7.9 Getting in touch with your donor
After a stem cell transplant, some people really want to get in touch with their donor. Others prefer not to, and that’s ok too. The rules for contacting donors are set by the country they are from and vary from country to country. So unfortunately, it might not be possible to contact your donor.
Before the transplant
You won’t know the name of your donor and you can’t have any correspondence with them before your transplant. You might be told their age and gender – and in some cases, which country they’re from – but it varies between transplant centres.
After your transplant
For the first two years after your transplant, you may be able to exchange anonymous letters or cards with your donor to say thank you or tell them how the transplant went. You don’t have to do this, and your donor doesn’t have to reply.
Your first letter
You won’t know your donor’s contact details, so your letter will need to be passed on by the team at your transplant centre. Even though Scientific foundation SPIROSKI – Marrow Donor Registry has facilitated your transplant, our donor follow-up team doesn’t have access to your personal details. However, any letters you want to post after the first one can be sent through us.
Direct contact with your donor
After two years, if you and your donor agree, you may be able to have direct contact: exchanging names, contact details and perhaps meet in person. As the patient, it’s up to you to suggest this if you want it to happen. It usually follows a period of anonymous contact.
Direct contact must be two years after your last transplant or donor lymphocyte infusion (DLI) and you should be in good health. Your transplant centre will need to confirm that they are happy for this to go ahead so speak to your team when you are ready. We can speak to them for you if you prefer.
If you’re under 18, a parent or legal guardian can contact your donor on your behalf.
Contact with international donors
Your donor’s home nation will have its own rules about contact between the two of you.
Where contact is allowed, there will always be a period where you and your donor may only communicate anonymously. No names, personal details, photos or gifts can be shared.
After a period of anonymous contact, some countries allow patients and donors to have direct contact. Our rules allow direct contact after two years, although some overseas registries may not allow contact until five years post-donation.
You will need to be in good health and not expecting to need any further donations (including donor lymphocyte infusions) from your donor. Both you and your donor need to agree to direct contact.
The following international registries don’t allow any direct contact between patients and donors:
• Czech Republic
• New Zealand
• Poland (although you can through DKMS Poland)
Writing to your donor
Alongside your letter or card for your donor, please prepare a separate covering message stating that you would like your letter to be sent to your donor, including your name, date of birth, transplant date, and transplant centre and then either take a photo or scan the letter so it can be emailed as an attachment.
Your first letter must be sent via your transplant centre but any correspondence after then can be sent directly to us.
Please also let your transplant team know that you have sent a message when you are next in contact with them.
• What to include in your letter
It can be hard to think about what you want to say to your donor. For many people it’s as simple as wanting to say thank you. If you’re lost for words, you could tell them about the difference that it’s made to your life, including your feelings about the transplant. You could also let them know about any significant milestones that you’ve reached after your transplant.
• What not to include in your letter
There are some informations that you can’t include in the letters. If this information is included, we will have to take it out.
Please don’t include:
• your name or the names of your family members, but you can tell them if you are a child or an adult
• your location
• your job title, if it can be used to identify you
• information about further donations you need - you must not ask the donor to donate again.
Please don’t share your letters on social media or with the press unless you have signed a consent form with our press team.
• Waiting to hear back
There can be delays in processing your letters, so you might not hear back straight away. It’s not always possible to get in touch with your donor, sadly. We know this can be disappointing, but there could be lots of different reasons for this. Sometimes we might have more information about why, so you can get in touch with us to find out more.
Generally, donors are usually happy to hear from you, even if it’s just to say thank you. So, don’t be worried if you’ve had some post-transplant setbacks. Donors receive information at the time of donation that prepares them for the complications of a transplant.
On the other hand, you might not hear back from your donor; they may feel grateful to receive a thank you but may not know what to say or wish to continue contact. All donors are different.
Although you now share the same blood stem cells as your donor, this could be where the similarities end. Some donors and recipients strike up fantastic friendships – others find that they don’t have anything else in common. Either way, you shouldn’t feel any obligation.
8 Sex and Relationships
Sex is often a big part of our lives, whether we’re comfortable admitting it or not. It provides pleasure, releases stress, and can help to create a deeper intimacy with a partner.
So, it’s entirely normal to be concerned about a stem cell transplant affecting your sex life. But it’s also entirely normal to feel awkward and a bit embarrassed talking about this topic with anyone, from a partner to a medical professional. It’s personal, after all.
That’s why we’re here, and we’re so pleased you are too. It’s great that you’re looking for information and support on this topic.
We’re going to be frank yet sensitive on the topic of sex and stem cell transplants, and give you the tools, information and support to feel empowered to take control of your sex life and relationships.
So, let’s start with the big question…
8.1 Will having a stem cell transplant affect my sex life?
Yes, having a stem cell transplant may affect your sex life, both physically and emotionally. In fact, approximately half of all stem cell transplant patients experience issues with their sex life after transplant. You may experience some post-transplant side effects which can cause sex to be painful or a bit awkward, and you might feel anxious.
Here are the main difficulties you may find between 6-12 months after your stem cell transplant:
• You might experience a lower sex drive thanks to high dose steroids used to relieve graft versus host disease (GvHD) symptoms, as they can also supress the production of sex hormones.
• You may feel fatigued during recovery after your conditioning therapy and stem cell transplant. This can make the most basic daily activities difficult to achieve, let alone having the energy for sex.
• Genital GvHD can cause vaginal dryness and irritation, as well as the narrowing of the vagina and even ulceration in severe cases. It can also cause inflammation or a rash on the penis and scrotum.
• An irregular or absence of your menstrual cycle can cause vaginal dryness and hot flushes.
• You may have difficulty achieving and sustaining a full erection, known as erectile dysfunction.
• Narrowing of the urethra, the tube in the penis which carries urine and sperm, can cause discomfort. You may also have an inability to ejaculate.
8.2 Are there any treatments to ease these symptoms?
Your transplant team will provide you with the best possible treatments based on your medical situation. It’s likely that your treatment plan will include a combination of the following medications:
• Immuno-suppressants that can be applied to areas of the skin showing signs of inflammation.
• Steroids can be given in a response to inflammation, and calcineurin inhibitors (drugs to suppress the immune system) can be given to replace long-term steroid use.
• Oestrogen, the female sex hormone, causes the lining of your vagina to thicken and become more resilient, and can be given in forms of creams, capsules or release rings.
• Hormone replacement therapy (HRT) can alleviate menopausal symptoms, make sex less painful and can increase your sex drive.
• Testosterone, the hormone associated with our sexual desire, can be offered to men and women to increase libido and sexual desire.
• PDE-5 inhibitors, such as Viagra, can increase blood flow to the penis and help to sustain an erection. You can discuss more at an erectile dysfunction clinic which you can be referred to via your transplant team.
8.3 Top Tips
Have a bath in warm water to help you relax
Avoid perfumed lotions and soaps which can irritate your skin
Wear loose-fitting chlotes and cotton underwear to help avoid skin irritation
Use moisturisers or emollients to prevent skin dryness
Barrier crems, such as bacteriostatic fels, petroleum jelly or lotion cream, can be applied to lock moisture after a batch
Vaginal moisturisers and lubricants can make sex more comfortable
Get back in touch with your body. Gentle, slow masturbation with lube can really help
A narrowing vagina can be eased by regulary Inserting dilators. Regular sex can also help but only if you’re both comfortable
8.4 When can I have sex after my stem cell transplant?
Your transplant team will know your situation best, and can give you personalised advice on when it’s safe to have sex after your transplant. Generally, the consensus will be that you can have sex when you’re comfortable enough to.
• You must use a condom during sex until one week after your chemotherapy has stopped, as the chemo could be passed to your partner during sex – including oral.
• Avoid any sexual practices that put you at risk of infection, such as oral exposure to faeces, as your immune system is weaker.
• You may need to experiment with positions which are comfortable with a central venous catheter (CVC, sometimes called a Hickman line). Try positions where you’re on the bottom or lying side-by-side. Mutual masturbation may be a less strenuous option to start with, or having sex for a shorter amount of time. These positions may also help if you’re struggling with fatigue.
8.5 How will I know when I’m ready to have sex after my transplant?
There is no right or wrong time to feel ready to have sex again after your stem cell transplant. Everyone is different. It is entirely up to you and how you are feeling. Nobody should pressure you into having sex before you’re ready.
You’ll have been through a whirlwind of emotions and changes post-transplant. Your body has been through a lot! From hair loss and weight changes, to having a central venous catheter (CVC) inserted, there is a lot to deal with both physically and emotionally. It’s common to struggle with this, and to feel unsexy after transplant. You can find more information and support on body image after transplant in our Recovery: Mind section.
Give yourself time to feel comfortable in your body again before you think of having sex. Feeling confident and empowered in yourself and your body is the most important thing. Many patients talk about their sexual desire returning as their recovery progresses. Try to be patient and kind with yourself. You are still you, and your body is still fantastic.
8.6 How can I reintroduce sex?
It’s a great idea to start slowly when you want to start having sex again, both for mental and physical reasons. Perhaps you could:
• Cuddle, have a massage, or cook a romantic dinner together. Intimacy doesn’t just have to be about sex, so go back to basics first.
• Take a love languages test with your partner. These can be fun and interesting to find out how you give and receive love best, which can be helpful when re-building intimacy.
• Try out less energetic acts or positions, like mutual masturbation, spooning or oral sex. You’ll likely be struggling with fatigue, so low-energy sexual acts are best.
It can help to have open and honest conversations with your partner, friends, family and/or transplant team about how you’re feeling, both about your body image and sex life. Getting your worries and feelings out in the open can help you to feel more in control of them, and allow you to seek any necessary support.
I feel awkward talking about sex with my transplant team
Talking about sex with anyone, even a partner or friends, can feel awkward and embarrassing. Thankfully, medical professionals are very used to having these kinds of conversations. They’re trained in this, so there will be no embarrassment on their end. They’ll want what’s best for you, and knowing exactly how you’re feeling will help.
Usually taking the first step is the hardest part, so let’s come up with a plan:
- Plan a time to talk to them. Would you rather chat about this over the phone? Or in-person at your next appointment?
- Prepare notes. Write down what you want to bring up. This will help you feel organised when speaking, and you can always hand them your notes if you end up too embarrassed to speak!
- Feel empowered. It’s brilliant that you’re thinking about this. It’s great that you’re right here reading up on advice! Feel proud of yourself. You want what’s best for you, your body and your sex life, so go and get it. (But it’s also OK to acknowledge your vulnerability – you don’t have to feel super confident to talk about something sensitive!)
There’s a topic I’d like to bring up but I’m a bit embarrassed about it…
I’m feeling a bit nervous about something, could I write it down for you?
Is it normal to worry about sex after transplant?
I’d like some more information on how to approach my sex life post-transplant…
I’ve been having some discomfort during sex since my transplant…
I’ve written some notes on how I’ve been feeling, could you read them?
8.7 How can I talk to my partner about sex after transplant?
Having sex and talking about sex are two very different things. No matter how long you’ve been together or how close you are, talking about such a personal topic with your partner can feel awkward. That’s ok.
It’s important to chat about your sex life, both to navigate any physical side effects and to acknowledge any worries. A great sex life comes with great communication! Your partner will want the best for you, and could well be worried about this too.
It all begins with taking that first step. Let’s come up with another plan:
- Where and when is best to chat? It’s definitely not during sex, or just after. You’re both too vulnerable in those moments. Pick a neutral time and place, maybe when you’re in the car, out for a walk, or cooking together. Doing another activity can help to lessen the intensity of the conversation.
- Is there something specific you want to talk about? There might be lots of things on your mind, but you don’t have to talk about them all at once. That’s exhausting. Perhaps pick one thing to introduce the topic. It may then feel easier to have further conversations.
- Write down what you want to say. If you’re prepared, you’re less likely to stumble over your words and maybe feel embarrassed. Write down some notes to remember important points. You might even feel more comfortable writing a letter to your partner before chatting.
- Remember ‘I’ statements. If you want to bring up anything your partner has said or done, start with ‘I’ instead of ‘You’, as ‘you’ can sound accusatory. Instead of ‘You make me feel’, say ‘I feel this when this happens and need this to happen going forward’.
- Ask questions and listen too. As well as spilling your own thoughts, ask your partner if they have any thoughts or worries too. Make this a conversation and not a speech. You’re working through this together.
I can’t believe it’s been X months since my transplant, so much has changed…
I’ve noticed this about my body, have you noticed too?
We’ve been through lots together, haven’t we? Is there anything you want to chat about?
I love being able to talk to you about how I’m feeling. How have you been feeling since my transplant?
I think I may be ready to have sex again, bit I’m a bit nervous
I’ve been feeling a bit rubbish about my body, could I have a bit of thought-dump with you?
I was doing some research on sex after transplant, could I share it with you?
Fertility is also a big topic which can be sensitive to talk about before and after stem cell transplant. But it’s a necessary one to have with your partner and transplant team. You can read more about this topic on our Bigger Issues page.
8.8 I’m nervous about dating after transplant
Dating can be nerve-wracking at the best of times, let alone after going through a stem cell transplant. You’ve been through a lot and may have lost some confidence. It’s very normal to be nervous.
There’s no right time to date again after transplant. You should only date again when you feel ready to, and should work on your own relationship with yourself first and foremost.
If you want to date again but are anxious, how about going about it in one of these ways?
• Meet new people through a hobby, social group or volunteering. This is a much more relaxed situation in which to get to know someone new. There’s much less pressure.
• Ask friends and family for their help. Maybe they can set you up with a trusted friend of theirs. They could even talk to them about what you’ve been through before you meet so you don’t have to worry about bringing it up, if that helps.
• Join a support group, through your hospital or charities, to meet new people going through similar experiences. You’ll all have a better understanding of each other and could open up more easily.
8.9 Should I tell a new partner about my transplant?
It’s entirely up to you what you tell new people about what you’ve been through, and when you tell them.
There might not be an obvious time to bring it up with a new partner, but it’s probably best to talk about your history before things get too serious. This is especially important if you have concerns in areas like fertility. Follow the steps above to help you have these conversations.
If you feel comfortable with this person and trust them to be supportive, it can help to tell them. And if their response isn’t supportive, they’re probably not the right person for you. A loving partner will accept you for who you are and will want to work through any issues. Don’t settle for less than you deserve.
9 Support for parents, family and friends
Supporting someone through their stem cell transplant journey can be really tough – physically, emotionally and mentally. But the good news is, you can access help from a range of places including social services, government benefits and charities, as well as your social network of friends and family.
Nobody expects you to do things on your own. Many people will be happy to offer you support but you also need to have the confidence to ask for it when you need it.
If your sibling or another family member needs a transplant, you might be asked to be tested to see if you’re a match. Even if you’re happy to donate your stem cells, it’s still important to know what’s involved and think about the impact it could have on you and your family in the future.
This section looks at the following situations and provides support and advice that will help both you and the person having a transplant.
9.1 My child is having a transplant
Hearing that your child needs a stem cell transplant can make you feel a wide range of emotions, from fear to relief.
Some parents and guardians are thankful that a potential cure is finally an option for their child. Others feel overwhelmed as they try to understand lots of new and complex information.
It can be a very challenging and emotional time for everyone involved. It’s essential that you get the support and help you need so that you can support your child every step of the way. Understandably, some people forget about their own needs during this time, but your mental and physical wellbeing need looking after too.
9.1.1 Being informed
If your child is under the age of 16, you will have to give consent for the transplant to go ahead. Your child’s medical team will talk you through all the possible options and answer any questions you have.
Don’t be afraid to ask questions more than once if you haven’t fully understood. It’s an extremely stressful time for you and the team will understand. Take time to think about the questions that are important to you. Our meeting your consultant page has some suggestions that you might find useful for this.
In the weeks and months after the transplant, your family will be supported by a clinical nurse specialist (CNS) and/or a transplant co-ordinator. They will check that everything is going ok and answer any queries you have.
The SFS-MDR Body, Mind and Life recovery sections also provide information about what to expect during this time, and where to get more help when you need it.
Many parents find that being prepared for the approaching transplant helps them to cope with the situation.
If possible, try to visit the hospital ward beforehand to familiarise yourself with the surroundings and hospital staff. It might be a good idea to take your child along too, if you think it could settle their nerves. You should also check how often you can visit and the arrangements for staying overnight.
Talk to your child’s teacher or head teacher regularly to update them about the situation. They need to be made aware of the time off your child is likely to have, and the support the school will need to provide when they return.
When your child is in hospital they are entitled to continue their education. When they are fit and well enough, your child’s school or local council will provide the support needed to do this. However, if you have any concerns, talk to someone at the school so that plans can be put in place.
9.1.3 Help your child understand
Having a stem cell transplant and staying in hospital can be a very difficult and stressful situation for children of all ages. They will be anxious of the unknown, the future and staying in an unfamiliar hospital.
Take time to explain to them what’s going to happen. (Hopefully the information on our website has helped you to understand the process better.) Try to not overload them with too much at once, and encourage them to ask questions so you can fill in the gaps.
For whatever reason, your child may not want to follow the rules surrounding infection control, or understand how important they are post-transplant. If this becomes a problem, try to engage with them about it – try making it a child-friendly experience that’s silly or fun. At the end of the day, you know your child better than anyone else, what makes them happy and how they are likely to respond.
It’s important to involve any brothers and sisters too, and see if they have any questions. They might not have the confidence to say they don’t understand, or could be feeling left out if the family’s attention is focused on their sibling and their treatment.
9.1.4 Look after yourself
Your child will understandably be nervous and even frightened about what they are going through. They will look to you for support and reassurance that nobody else can give them. So you need to make sure you’re looking after yourself both physically and mentally during this time. After all, this is probably the hardest thing you’ve ever had to go through too.
9.1.5 Ask for help
Try to get a support network of friends and family in place to help you when you need it. Make sure there are people you can talk to about your situation and how you are coping, or who can take your mind off things for a bit. Don’t feel guilty about laughing and forgetting about your stresses for a short time.
If people offer to help but you don’t know what to say, these suggestions might come in useful:
• Childcare – If you have other children who need looking after while you’re at the hospital.
• Pets – Ask if they wouldn’t mind popping in to feed your pets or taking them for a walk.
• Batch cooking – Having a freezer full of prepared meals comes in handy when you don’t have time or energy to cook yourself.
• Housework – Making sure your house is clean can help reduce the risk of spreading infections.
9.2 My partner is having a transplant
Helping your partner through their transplant journey has probably become the most important thing in your life. Although you are probably happy to do it, it can still be difficult and demanding, especially if you also have to earn a living and look after your family.
Just as your partner has had to get used to being less independent, it can take time for you to adjust to your new supportive role. It’s understandable that you might find it hard to cope with this responsibility, while also worrying whether they’re getting better.
9.2.1 Practical tips
Get informed – Finding out more about stem cell transplants and the potential challenges that lie ahead for you both will help you feel more in control of the situation. It will help you to prepare for all possibilities and reduce the chance of something unexpected happening. Your partner’s medical team will be happy to answer any questions you might have, at any point.
Accept help– Support from friends and family with household chores and other daily tasks can give you more time to care for your loved one.
9.2.2 Supporting your partner
Sometimes you might feel helpless or unsure about how to help your loved one through these tough times. Here are a few suggestions you might find beneficial:
• ‘Just being there’ – it might not seem like much, but keeping your partner company can stop them feeling isolated.
• Share activities together, such as jigsaws, films or a board game to pass the time in hospital. Carry on these activities as they recover but add in new ones, like exercising or going for a walk.
• Develop a routine. Make time for dinner and relaxation, and plan times when you’ll update other family members and friends on their progress. This can help things feel more secure and predictable.
• Travel with your loved one to hospital appointments if you can. You could help them think of any questions they have beforehand and make notes during the appointment.
9.2.3 Looking after yourself
Many partners feel guilty about admitting to their stress because they think they should always be strong for their loved one. However, it’s perfectly ok to talk to them about feeling this way, and it will benefit your relationship in the long term.
Enjoy a bit of ‘me’ time – find the time and space to enjoy things independently of your partner. This might be simply phoning a friend for a chat or re-starting a forgotten hobby. Nobody will judge you for taking some time for yourself. It will reinvigorate you and give you fresh energy to tackle the challenges ahead.
You need to make sure you’re physically looking after yourself as well as your loved one. If possible, try to maintain a healthy diet, sleep well and exercise regularly. It will help to make you feel better.
You might need emotional support too. If you would prefer to talk to somebody else about how you are feeling, there are options available. Your partner’s medical team can put you in contact with a therapist, or you may benefit from sharing your story with people going through a similar experience.
9.2.4 Relationships and family life
Having a stem cell transplant can change the normal pattern of life and affect relationships, friendships and roles within your family. We have plenty of advice and support to help you address these changes within our sex and relationships and family sections.
9.2.5 If the transplant doesn’t work
Despite the best efforts of everyone involved, your partner’s transplant may not work. Their donor’s cells might not have been accepted by their body (known as graft rejection or graft failure) or the original condition might have come back (relapse).
This can be a really tough time for you and your family, but your partner’s medical team will talk through what happens next and the possible treatment options for your partner.
It might not be possible for your partner to have further treatment to cure their illness. At this stage, open discussions with their medical team are an important way of making sure everyone understands the options and agrees on the best approach.
If someone you love has died during or after treatment, it can be devastating. You may experience a lot of strong emotions that can be difficult to cope with – shock, pain, anger, guilt, depression, and longing. Grief is a natural process, but it can be overwhelming.
We have further advice and support on our Bereavement page.
9.3 My friend is having a transplant
9.3.1 What to expect
When your friend has had their stem cell transplant, they will spend at least a few weeks in hospital to recover. This allows them to recover from the conditioning therapy they had before their transplant and gives their new immune system time to develop.
When they come home, it will take time before they start to feel anything like ‘normal’ again. Although they may look much better than they did before their transplant, they could still have a long period of recovery ahead of them.
Some people find their recovery from stem cell transplant is relatively straightforward, but for others it can be very difficult and demanding. Your friend may have to deal with long-term side effects such as Graft versus Host Disease (GvHD), fatigue and infections.
It’s also quite common for people to have to go back into hospital for further treatment. They will be monitored closely by their medical team so that if problems do happen, they can be dealt with quickly. They will also have regular hospital check-ups and blood tests to check that everything is ok.
If you want to find out more about stem cell transplants, our webpages can tell you everything you need to know. They explain what a stem cell transplant is, the treatment your friend will have and what they can expect during their recovery.
9.3.2 Practical help you can offer
There are plenty of ways you can help your friend so that their day-to-day life is a little easier. You obviously know them better than we do, but the following suggestions might be useful.
Childcare – If your friend has children, they may really appreciate you looking after them whil
Housework – Offer to help with the cleaning, shopping or preparing meals that can be frozen (for when they are needed later).
Update others – Your friend may decide they only want to see a few close friends to begin with. You could suggest that you keep the wider circle of friends updated on their behalf, so that your friend doesn’t become too overwhelmed.
9.3.3 Your health
Your friend’s immune system will not be as strong as yours, especially in the early stages of their recovery, which means they are at a greater risk of picking up an infection. So if you have a cold or illness, or even if you just feel slightly under the weather, it’s best to not see them – re-arrange any plans for when you are better.
Your friend may seem uneasy or even paranoid when you visit because of the risk germs and dirt can pose to them. Try to be mindful of this, and make a point of washing your hands with either soap or alcohol gel as soon as you arrive.
If you’re not sure about something, just ask! Your friend will appreciate you taking the risk of infection seriously. We also have more information on our dealing with infections page.
9.3.4 Listening to difficult conversations
Sometimes your friend might go through a tough time in their recovery and they could turn to you for help and support.
Unfortunately, we can’t tell you exactly what to say to make everything ok. Often the most important thing is simply to listen, so they know that their problems are being heard.
It might also be worth bearing the following suggestions in mind:
• Ask open-ended questions that allow your friend to expand on what’s troubling them.
• Reflect back the main points you’ve heard. It will let your friend know you have understood.
• Try to use open body language and keep eye contact.
• Be supportive by reassuring your friend that how they are feeling is completely normal, and that there will be a way of getting through their problems.
• Don’t interrupt them, even if you think what you’re about to say is helpful. Wait until they have finished speaking first.
Offering them specific help with a certain problem is better than saying you can help in any way you can.
9.4 Donating your stem cells to a relative
If you’re reading this, it’s most likely because someone in your family needs a stem cell transplant to treat a blood cancer or blood disorder. This also means that you could be able to donate your own blood stem cells to them. Although you may have already decided that you want to help, remember the choice is yours and nobody should pressure you into saying yes.
Before you go ahead with further tests to see if you’re a match, it’s a good idea to find out more about what’s involved. Our webpages provide information on what a stem cell transplant is, the treatments involved, potential side effects and your relative’s long-term recovery.
9.4.1 How likely am I to be a match?
Sibling transplant – You will normally be tested first because a fully matched sibling (brother or sister) donor is the preferred option for patients. Siblings are the people most likely to be a perfect match for their brother or sister because they share the same parents. You have a 25% chance of being a perfect match.
Haploidentical transplant – In certain situations, your relative’s transplant team may consider using stem cells from a family member that’s a half match. This is called a haploidentical transplant. Siblings have a 50% chance of being a half match, while parents are always a half match for their children, and vice versa. This gives a much better chance of finding a suitable donor.
More information on how we test for matches and the different types of stem cell transplant can be found in our understanding transplants section.
9.4.2 What happens if I’m a match?
If you’re a suitable match for your relative and you’re happy to donate your stem cells, the transplant centre also needs to make sure you’re fit and well enough to donate.
Depending on your situation, it might not be medically safe for you to donate. The transplant centre will talk to you about this in more depth.
It can be upsetting to learn that you’re unable to donate when you want to help. Try to remember the doctors make their decision based on what’s best for you and what’s best for your relative. If you have any concerns at all, you should discuss them with your relative’s medical team.
9.4.3 How do I donate my cells?
You will donate your stem cells in one of two ways. Most people donate through a process called peripheral blood stem cell collection (PBSC). Your blood will be passed through a small tube into a machine that collects the stem cells, and then returns the rest of the blood to the body.
Around 10% of donations are given as bone marrow. This involves a small surgical procedure, using a needle to collect bone marrow from your pelvis under general anaesthetic.
You can learn more about the donation process on our donor page.
9.4.4 Will I need to donate again?
You may have to donate more cells to your relative at some point, as they may need something called a donor lymphocyte infusion (DLI) – a ‘boost’ of cells to make sure the transplant is working as well as possible. A DLI could also be an option if their original condition has come back.
9.4.5 What if I’m not a match?
This can be disappointing and worrying news, but even if you can’t donate, it’s likely that there are other options available to your relative. It’s important to not blame yourself – there wasn’t anything you could have done to be a better match for your relative.
If no related match is available, the transplant centre will usually get in touch with us and we’ll search for an unrelated match to donate to your relative. We’ll look through our register, searching all potential donors in Macedonia and overseas.
If you feel you would like to do something to help, there are plenty of other ways to get involved. You might want to encourage more people to join the our register.
More information on ways you can support is available on our donor page.
9.5 Bereavement and stem cell transplant
Losing someone close to you after a stem cell transplant can be devastating. Although it is a challenging treatment, there is often a lot of hope that it will give a long-term remission. You are reading this because sadly it has not been successful.
Bereavement is a very personal experience and there is no right or wrong way to grieve. What will follow is a mixture of emotions that can fluctuate over time.
The post-transplant experience leading up to the bereavement can sometimes be difficult and can leave you with questions and emotions that you might need help with. Although we cannot know what you are experiencing, this information is aimed at helping you identify those emotions and answering some questions that you might have.
9.5.1 Bereavement and stem cell transplant
The decision to have a stem cell transplant is a tough one. For some it is a choice, while for others it is the only option.
Recovery can be long and challenging and you might now have questions about what happened. Your partner or family member’s transplant team will be able to answer questions about their specific treatment, but this web section will address some of the general concerns you may have.
Was having the transplant the right decision?
Stem cell transplant is never considered by the medical team unless it is the best option for a long-term remission.
Many factors are used to decide if a transplant is necessary for your family member or friend, such as their diagnosis and their response to treatment.
In some cases, the transplant needs to happen quite quickly while in others there could be a choice about timing.
Knowledge is growing all the time about what factors improve outcomes for patients. All of this would have been discussed with a multi-disciplinary medical team before the decision to go ahead was made. So you can be sure stem cell transplant was chosen as the best hope of a cure for your family member or friend.
Why didn’t the transplant work?
Sadly, even with experience and knowledge, what we hope will be a long-term remission of blood cancer or a blood disorder does not always work. It can be a sign that the disease was aggressive and harder to treat.
Stem cell transplant is a strong treatment, so if it doesn’t work then there will be few other successful treatment options. The sooner relapse occurs after transplant, the poorer the prognosis (likely outcome) will be. After relapse and before other treatment options are decided, consideration would have been given to:
• the time of relapse
• the patient’s experience of graft versus host disease (GvHD)
• and the transplant’s impact on the patient physically and mentally.
Graft failure (when the body doesn’t form a new immune system from the new stem cells as planned) means more stem cells or a new donor will be needed to provide the new immune system.
The risk of infection will be high and, in rare cases, the bone marrow does not recover.
The transplant worked, so why did they still die?
In their worst cases, transplant-related side effects (such as infection and GvHD) can be fatal.
Sepsis (overwhelming infection) or chronic infections that prevent the immune system from recovering will leave the patient vulnerable and unable to fight infection. Along with their treatment, GvHD that is uncontrolled or involves several organs can also leave patients weak and vulnerable to infections.
In this very difficult situation, patients can get stuck in a cycle of being unwell and being admitted to hospital, making quality of life poor. To die from post-transplant complications is often complex and not due to just one side effect but a combination of side effects.
I knew it would be tough but I didn’t think they would die
We expect recovery from transplant to be challenging. Nevertheless, when it is tough and patients are struggling with side effects, our hope remains that this will achieve a long-term remission.
Patients with complex needs can deteriorate slowly and the constant cycle of admissions and infections can become almost routine.
However, the impact of this will be felt physically and mentally by the patient, and the demands can prove too much. Despite this, it can feel like a shock when patients do not recover.
It all happened so quickly, it was so unexpected
Sepsis (overwhelming infection) is a risk for any patient recovering from a transplant. It is always a concern for those patients who are struggling, but even those who are doing well are at risk.
In any situation, sepsis will be an emergency and will probably involve treatment in an intensive care unit (ITU). It can be overwhelming and scary, often taking patients away from their usual environment into ITU with healthcare professionals they do not know. Deterioration can happen in days or even hours, and it can feel totally unexpected when the patient dies.
It can feel unfair that, despite everything, your relative or family member has died. It is normal to have many questions in a situation like this.
Talking about how you feel with those who were included in the decision-making will help clarify the choices that were made about treatment. This might be with healthcare professionals or family members who were involved.
You can arrange an appointment to speak with the consultant or clinical nurse specialist (CNS) if you would like to. It is the medical team’s responsibility to explain the decisions that were made, so don’t feel like you shouldn’t ask them.
Grief is a very personal experience and everyone will react differently. There is no right or wrong way to grieve, and how you feel will change and fluctuate over time. Grief might feel overwhelming and intense at times, while there will be other periods that feel calmer.
Below are common feelings expressed by relatives who have lost someone after a transplant. You might also experience some of these, and you might experience them at varying times. But it is completely personal. Don’t place expectations on yourself about how you should be feeling, or how long you should grieve for.
I feel so sad
Having a stem cell transplant can bring hope, and it can be devastating when that hope is lost. The experience from diagnosis, to transplant, to now can leave you feeling drained and exhausted.
Sadness can feel overwhelming and it might seem hard to get through each day. Although these feelings can come and go, over time the intensity should decrease and you will have periods that feel more manageable.
I feel angry
In the same way that lost hope can bring sadness, it can also bring anger. Recovery after transplant might have been difficult or it could feel like their death was unexpected, and you could now be asking yourself: ‘Why?’
The effect on the family, and your sense of loss, can leave feelings of anger, frustration and blame.
Although unpleasant, these feelings are completely normal and the immediate period after the death can be stressful. It’s important to not allow these feelings to grow but instead to talk about how you feel.
I feel lost
Feeling lost and unsure what to do next after a bereavement is very normal. This is especially common after the funeral, when your family and friends must get back to their normal lives and you can be left with large parts of your day that feel empty.
Building relationships with healthcare professionals who were involved in your relative or family member’s care, or with other patients or relatives, is a common way of coping at the time. They can provide insight and support about life after transplant, and it might now feel strange to not see them or have that support.
Perhaps you were the carer, attending all the regular visits to hospital and adapting your home life. You may have given up your job and social life and now you may feel there is a hole.
I feel relieved, I didn’t want to see them suffer anymore
Watching someone you love in distress is tough. The duration of time that this can go on for after a transplant can be prolonged, so to feel relief that it is now over for them is completely normal. It is nothing to feel bad or guilty about.
Due to the challenging nature of recovery, it is common to feel that you already lost part of the person you loved.
You might feel that they changed, or your relationship with them changed. The pressure on patients, families and relationships is hard, and quality of life for everyone involved can be severely affected. It is ok to have a sense of relief that it is now over.
Physical effects of grief
Grief can affect you physically as well as emotionally. You can feel exhausted, unmotivated, unable to eat, unable to sleep and might even feel ill. You might become more susceptible to infection because you are run down.
As hard as it might seem, you now need to focus on keeping yourself well. Just managing a normal routine of getting up every day, eating well and a bit of physical activity will help you in the long run.
9.5.3 Aftercare and support
With any of these feelings, it’s important that you talk to someone. Talking to family and friends can help, especially those who have been involved and have an idea of the experience you had after the transplant.
It can be hard for anyone to really understand the impact and emotions that you might be feeling.
Consider talking to people who have been in the same or similar situations, and ask at the hospital or your local hospice if they have any support groups for relatives.
Professional help with a bereavement counsellor could help. Saying out loud what you feel can be therapeutic, as well as having someone to listen. You can be referred for counselling by the hospital, GP or local hospice. Even if your relative or family member was not being cared for at the hospice, they might have some support services that you can access.
If your relative or family member’s diagnosis was not a type of blood cancer, or they died of post transplant complications rather than relapse, it can be difficult to access cancer support groups.
But there are other types of support groups you can access. We’ve listed some below, as well as suggestions for online groups and forums if you feel this format would be better for you.
If you have questions about any part of the transplant, you can arrange to speak to the consultant involved in the care. Give yourself some time to gather your thoughts and consider your questions, and perhaps take someone with you for support.
Ask family and friends for help with the practical things such as funeral arrangements, informing banks and cancelling bills etc. They could help with the basics like tidying, cleaning, and cooking meals, too. Family and friends often want to help during a time like this but don’t know how to, so this could be a good way for them to give you some support.
9.5.4 Supporting children
Just like adults, children grieve in different ways and there is no right or wrong way to go through this process. Grief will be affected by the child’s age, their understanding of what has happened and why.
Losing someone close will be devastating. Their reactions can vary greatly and can change over time, and that’s OK.
It can be difficult to support children when you’re also dealing with your own grief.
This is a hard balance but it’s important that they see that you are grieving too. Don’t be afraid to show your children that you are upset but do explain why you are upset, so they know your distress wasn’t caused by them. Understanding that it’s ok to show emotion will encourage them to do the same.
During recovery after transplant, children might have spent long periods away from the person they loved and home life might have changed. Grandparents might have been more involved, for example, or they could have spent more time with close friends while you were at the hospital.
This can mean that relationships within the family or with friends can change, and children may need time to adapt. They also might have seen physical changes, such as weight loss or skin GvHD, which may have been hard for a child to process and understand. Talking about these things can make sure difficult feelings aren’t bottled up.
Like adults, a child’s reaction to death can include sadness, anger and feeling lost, but they might not know the words to express how they feel.
What support is available for children?
Many children manage their grief well with support from their family and friends.
However, if you are worried about how your children are grieving, there are some good helplines and websites which can help you decide whether they will need extra support and who to contact. Your hospital, GP and local hospice are also good places to ask for help.
Schools can offer extra support at this time. It is helpful for them to know what has happened so they can help children who need it and take account of the death if academic tests are coming up. Schools often have staff who can give your child time to express their grief using talking, drawing or play. See ‘Other useful contacts’ below.
Living with bereavement
The journey through transplant and treatment can be challenging, and you might feel as if life has been on hold. You might now want some time out or just some sense of normality again.
These feelings are completely normal. Over time your bereavement will change. Allow yourself some short, sad moments and in time you will regain hope.
These can be especially challenging. Although it may be the occasion or date that you dread, often the build up to the day can be worse. You, your family and friends might choose to prepare yourselves for anniversaries differently. This is very personal, and you should all cope with it as you wish.
Support from others
This can feel overwhelming in the beginning and then, as people return to their normal lives, support can dwindle. This can be hard but try to find a focus to help you cope, like returning to work or setting yourself little goals. Volunteering or taking part in peer support with other people who have had similar experiences can also help.
9.5.5 What about the donor?
Bereavement can be especially difficult if the donor for the transplant was you or a family member.
Being a donor brings optimism, but it can also feel like a responsibility. When someone dies, the donor can feel somehow responsible for the transplant not working.
This is, of course, not true as without the donor the chance of survival might not have been available.
If the donor was a family member, it’s important to consider their feelings. Make sure they are not carrying around feelings of guilt or anger, and encourage them to talk about how they feel and to access support if needed.
Contacting the donor
For families of patients who had an unrelated stem cell donor, you might have been thinking about contacting their donor. This is completely up to you. Donors do not expect to be contacted, so don’t worry if you don’t feel like you want to.
Here are a few things to consider:
• Like with everything, we would advise you to give yourself time before deciding to make contact.
• Emotions are high and feelings can change, so it’s good to be sure that this is definitely what you would like to do.
• Your contact might be the first time the donor learns of the death so it could be a shock to them. They too might feel a sadness and a loss.
• Some donors choose to not know what happens after they have made the donation, and this is their choice. There is no guarantee that they will accept your contact or respond.
• Once contact has been made, the donor might wish to stay in touch so you need to think about what your expectations are, and how you would like to manage this long term.
• For some international donors, there might be some restrictions on contact. Our Donor Follow Up team will be able to advise on this.