Philip Alexander is an experienced counsellor and cognitive behavioural psychotherapist who has worked in the bone marrow transplant team at King’s College Hospital since 2012. Here Philip answers your questions about the emotional impact of a transplant.
When I first found out I needed a transplant my emotions were all over the place. Is this normal?
Yes. Going through a bone marrow transplant is a major life event, just as receiving you original diagnosis was. It’s normal in situations like to this to experience a mixture of thoughts and feelings, a whole range of emotions. I think it’s really important that people understand that their feelings are common, and not in any way a sign that they are weak, or stupid, or “crazy”.
Sometimes people’s feelings settle down over time, but because the process of transplant can be challenging you will probably experience lots of emotional ups and downs. Some people cope pretty well with being in hospital, but then find that when they go home they start to struggle.
It’s really important to remember that, emotionally, there’s no right or wrong way to be. You should be however you need to be and, hopefully, the people close to you will understand and accept this.
How long before I’m feeling back to normal?
It’s hard to give a black and white answer to this question because everyone’s experience is different – people recover and rehabilitate at different paces, and this depends on a number of things. In my experience, many people find that their recovery was slower than they’d imagined it would be. It’s probably more helpful to think in terms of months, rather than weeks.
From an emotional point of view, often you’ll feel better as you start to feel better physically. Some people cope well psychologically during and immediately after treatment, but then struggle with their mood later on, perhaps some months on from transplant. They can hit a wall emotionally and feel quite traumatised by how much they’ve been through – none of which is helped when the people around them see them as cured and expect them to be back to normal.
Some people tell themselves that they shouldn’t have any negative thoughts, or that they must be back to work within a particular time. Setting goals and looking forward can be helpful, of course, but it’s important not to put too much pressure on yourself to feel a certain way, or to achieve things by such-and–such a date. Be flexible in your approach.
How do I deal with feeling down or worried?
The first thing is to accept that, although these feelings aren’t pleasant, it’s understandable that you would have them given what you’re going through.
Rather than trying to suppress your feelings, acknowledge them.
Perhaps talk about your feelings with other people – both professionals and other people you feel comfortable confiding in. At the same time, don’t dwell on your thoughts and problems all the time – don’t let them consume you.
There are things you can do to help yourself with your negative thoughts. It can help to try and avoid definite, ‘black and white’ statements about the situation. So instead of ‘I KNOW everything’s going wrong’, or ‘My life’s over’, for example, try and think about things in more helpful and flexible terms – for example ‘I know that things are difficult now, but I am making progress, and there are some signs that things will get better.’
If you’ve cut yourself off from people or you’re not doing anything you enjoy anymore, try to change this. Make an effort to engage with others, and with things you normally enjoy. Talking to a counsellor could help you to gain some additional coping strategies.
How can I stop worrying about the future?
Worry is all about the ‘what ifs?’ and the playing out of worst case scenarios in your mind. While this is understandable to some degree, given that you’re dealing with a major life event, it’s important to remember that none of us can predict or control the future. This means that dwelling on things that are unknown or uncontrollable is ultimately pointless and will increase your anxiety, not reduce it.
You won’t be able to stop these thoughts completely, but instead of thinking them over and over again, you could take some practical steps to address any immediate concerns that you are able to do something about. Engage in some ‘problem-solving’ by considering options and writing them down. Make a plan of action to deal with things you can control or influence. Then what’s helpful is to stop dwelling on the things you can’t change or things that are impossible to predict because they’re in the future
This is often helped by doing something different rather than sitting there thinking. Getting active or distracting yourself in various ways is helpful – whether this is through doing a crossword puzzle, meeting friends or exercising. Trying to stay in the present and being focused on the ‘here-and-now’ is useful. When your mind ‘wanders’ into the past or worries about the future you’re more likely to experience anxiety or low moods. Meditation or ‘mindfulness’ techniques can help with a ‘busy mind’. Again, seeing a psychological therapist could also help
Why see a counsellor? Could it help?
People often find talking to a counsellor helpful because counsellors are neutral and objective, as well as being professionally trained in emotional well-being. Seeing a counsellor doesn’t mean you’re mentally ill or that you’re weak; it’s an opportunity for you to speak openly and in confidence about your most important concerns.
There are different counselling approaches and people have different needs from the process of counselling. Some patients want to be able to express their feelings and talk at a deep level about their problems and their fears. Others want to acquire coping strategies to help them to manage their thoughts and feelings better. Ideally your counsellor should be able to work in different ways to suit your needs, or know someone you can be referred on to if necessary.
If you think it’s right for you then ask your medical team if they can refer you to a counsellor or psychologist.
How can I look after my partner and family during and after my transplant?
While it’s really important to acknowledge that your transplant will affect the whole family and those closest to you, when you’re the one going having the treatment it’s hard to take care of everyone else’s emotions.
It’s understandable that you’d worry about the people you care about – but it’s not your job to look after everyone else’s emotional wellbeing, especially if you’re feeling really ill. Even more importantly, it’s extremely unhelpful for you to feel guilty or to have thoughts like you’re a burden.
Obviously children need a huge amount of support and reassurance, but there are usually other people that can help you in doing this, including the children’s schools.
The adults in your life need to take some responsibility for their own feelings and for looking after themselves – you can’t make sure everyone else is OK when you’re trying to manage yourself. This isn’t always easy, of course, and they do need to be kind to themselves and to ask for support.
Some practical things they can do is to think about how much visiting your loved ones can realistically do, and make sure that they take some time out and do things that relax them or that they enjoy. This is where you can help – by giving them permission to take breaks and to look after themselves.
Often relatives and carers feel guilty if they have any breaks or any fun. Try to be open with the people close to you and share feelings and thoughts between you, rather than leaving important things unsaid. Equally, it’s good to have a balance and have some ‘normal’ time together, as well, where you’re not dwelling on your problems.
My loved one has had a transplant, they still seem really down and quite angry but they won’t talk about it? What can I do?
The course of recovery after a transplant can be long and unpredictable. As I’ve mentioned earlier, some people have a delayed emotional response. But at any time the person who’s had the transplant could feel a mixture of emotions, including anger.
Anger can be about different things, but often it’s about the sense of normality the person’s lost, or it can reflect a sense of frustration that their recovery is slow. Some people feel angry at the world for being ill and having to have a transplant. It’s important to let your loved one know that you’re there for them and that you’re prepared to listen if they want to talk.
But obviously you can’t force someone to talk, and trying to do so could make the situation worse. Again, it could help them to talk someone neutral like a counsellor.
In my experience, one of the things that helps patients and loved ones is accepting that the illness and the transplant have changed the person who’s had it. These can be both positive and negative changes, but there’s a difference.
Sometimes it’s that they look at life differently, and have different priorities going forward. It could include the fact that they can’t manage some of the things that they used to.
These changes, or differences, are often referred to as the ‘new normal’ and, accepting this, rather than constantly thinking that you want life to be exactly the same as it was is helpful.
Find out more
We hope you found those answers useful.
For more information about recovery after transplant you can download our free publication ‘The Seven Steps: the next steps’
If you’re a partner or family member read our page about supporting someone through a transplant.
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