Your mental health after a stem cell transplant

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How could a transplant affect my mental health?

Lots of people experience a range of emotions during recovery from their stem cell transplant. However, some of these emotions can feel difficult to deal with.

Throughout your transplant journey, there will probably be times when you’re worried, times when you’re scared and times when you want to cry.

The important thing to remember is that you are not alone – these feelings are completely normal, and you can get support.

Mental health is often overlooked when going through a stem cell transplant. Mental health problems can occur when you least expect it, many years down the line. Be kind to yourself, take a break and know when to seek support.
Sarah, who had a stem cell transplant

Your feelings after a stem cell transplant

The first step in trying to cope with challenging times and find ways to improve your mental wellbeing, is understanding and recognising your feelings. You might experience all, some or none of the following during recovery.

Sad and low

Anger and grief

Isolated

Anxious

Loss

Hopeful

Opening up about your mental health

Letting someone else know how you’re feeling is often the best way to start getting help. Most of us feel a sense of relief after having opened up to someone.

Before you start, remember many people go through things that can affect their mental health. Even if they haven’t had a stem cell transplant, they could have experienced similar feelings for different reasons.

When it comes to talking about something that could feel upsetting, have a think about who you’re most comfortable talking to:

Someone close to you

For some people this means a family member or friend. But you might have found that your relationship with them is slightly different after your transplant. For more information, see our page on relationships with others.

Someone who doesn’t know you

Many people prefer to talk with someone they don’t know as well. This could be a member of your community, like a religious figure, or a mental health professional. For more information, visit our section on talking therapies.

What can I do? What do I do? Am I prepared and coping or not? The sessions that I had with my Anthony Nolan clinical psychologist were very helpful.
Darren, who had a stem cell transplant to treat peripheral T-cell lymphoma

We have some tips for opening up about your mental health:

Try to gather your thoughts beforehand so you know what you want to say. Writing some notes in advance might help, especially if speaking to a mental health professional.
Find a relaxing and quiet place to talk. Ideally this should be somewhere comfortable and without distractions.
Expect quite a few questions. You don’t have to answer everything they ask, but it will help the other person understand what you’re going through.

Remember that your difficult thoughts and feelings might come back, even after opening up to someone. It will probably take some time before you feel like you can cope with things alone.

Coping with grief and loss

Unfortunately, stem cell transplants do not have a 100% success rate. Over time, you may have to cope with the death of someone you were close to during your hospital stay or recovery. This is never easy and could feel very emotional for you – especially if you’re also experiencing complications with your own recovery.

There is no right or wrong way to deal with feelings of grief, but it’s not a good idea to ignore them in the hope 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 feel like a release, whether it’s on paper or digitally.
If you would like to talk to someone, your transplant team can organise a counsellor for you, which is a type of talking therapy.

For more information, including help for your friends and family, see our page on bereavement. We also recommend looking into some extra help on our finding support page.

When should I seek extra support?

Some of us need extra support to help us cope with our mental health. But it’s not always easy to recognise this, especially if you’re feeling anxious or low.

You might need to get support from your GP or medical team if you:

have been feeling very low and not like your usual self
cannot find the motivation to do anything, even important tasks
regularly have trouble sleeping
experience lots of negative thoughts about yourself, the world and the future
feel like you cannot control your thoughts
feel much more anxious than you ever have before.

If you start to experience any of these thoughts or behaviours, your GP or medical team can explain your options if they think you need extra support. This might include medication and talking therapies.

It was a really scary time. I’m such a strong-willed person and I wanted to be able to do things on my own, so it was really scary facing the prospect of never being independent again. I thought I’d never be able to go outside on my own. It went on for such a long time.
Mary, who had a stem cell transplant to treat acute lymphoblastic leukaemia (ALL)

You might need help straight away.

If you need help right away, you can start by calling the Samaritans for free on 116 123. For more information about mental health problems, visit the Mind website.

For information on where to find different types of support, go to our page on finding support for your mental health.

How can I improve my mental health and wellbeing?

While you can try lots of different things to help improve and manage your mental health, not everything works for everyone. Only you will know what works best for you, and some things may work better than others at certain times.

First try thinking about how you got yourself through other tough times in your life – you might find these ideas come in useful again during recovery.

You can also try our mental health tips and advice:

Self-care tips

Activities and interests

Spending time with others

Feeling more in control

Relaxation techniques

Telephone Emotional Support Service (TESS)

Anthony Nolan offers a free support service specifically for people who have had a stem cell transplant, and their families.

Through a series of appointments with wellbeing specialists, including qualified psychologists, you can:

talk to someone about whatever’s on your mind
discuss any of your concerns about the future or your treatment pathway.

If you think this might be helpful to you, email our team to arrange an appointment at patientinfo@anthonynolan.org.

For more information, visit our webpages on Telephone Emotional Support and finding support for your mental health.

If you let your mind go to that dark place, you’ll never be able to get out of it. Emotional support helped. It really helped being able to talk. The psychological side of recovery is just as important as the physical. I got strong again bit by bit. I always felt strong enough to get to the next bit – and then the next bit.
Mary, who had a stem cell transplant to treat acute lymphoblastic leukaemia (ALL)

Information last updated: 31/10/2024

Next review due: 31/10/2027