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.

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.

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.

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.

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.

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.

‘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.

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.

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
  • medication
  • 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
  • multi-tasking
  • 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.

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.

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.

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.

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.

Our body image is the way we think about ourselves and how we think we appear to others when we look in the mirror.

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. 

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.

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.

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.

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.

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.

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.

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:

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.

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 DLI for 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.

Second transplant
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
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.

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.

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.

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.

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:

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.

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.

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.

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. 

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:

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.

If you would like to try a talking therapy, your medical team or GP can refer you.

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.

Group therapy
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.

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.

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.

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. 


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.