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Your mental health after a stem cell transplant

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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.

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 transplant in 2016

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 sadnessBoth 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.

DeterminedSelf-managing parts of your recovery, such as your diet and exercise, can help you feel as if you’re regaining control of your situation.

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.

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. Organisations like the Samaritans (freephone 116 123) can help too if you want to talk to someone right away:

  • 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.

Anthony Nolan offers a free Telephone Emotional Support service specifically for stem cell transplant patients and family members, provided by Working to Wellbeing. Through a series of appointments, you can talk to someone about whatever’s on your mind, e.g. concerns you may be having about the future or your treatment pathway. Working to Wellbeing are a team of wellbeing specialists including qualified psychologists, with years of experience providing support for stem cell transplant patients. If you think this might be helpful to you, email our team to arrange an appointment: patientinfo@anthonynolan.org

Information published: 13/11/18
Next review due: 13/11/21

Related links

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