Having a stem cell transplant can be an intense and stressful time for everyone involved – including your partner, family and friends.
It’s common to find the roles and responsibilities within your family environment change for everyone. You might find that people close to you react very differently to each other. This time can be particularly challenging if you are a young adult who wants to be more independent.
It can be hard to work out why relationships succeed or fail 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; but for one reason or another, your relationship might become strained after your transplant or even break down.
Our sex and relationships section has plenty of information and advice for anyone who is having concerns about their relationship or sex life after a transplant.
If you are concerned about your relationship and you feel like you can’t resolve it without help, have a chat with your transplant team. They will be able to put you in contact with a counsellor who you can talk to, either with or without your partner.
As a young person, your relationship with your parents can become strained. This is 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 try to protect their child from any harm and to ‘wrap them up in cotton wool’. 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 that you argue with them more often. Rows are usually caused by breakdowns in communication, so it is important to understand how to negotiate and compromise. Try to remember that even though they might be putting on a brave face, at times your parents are likely to be as stressed and worried as you are. This can make it more difficult to listen to you and to see your point of view.
Your parents are not mind readers, so it’s important that you can tell them what you need and what you would like to happen without causing confrontation. However, this has to go both ways – so if they are insisting on something you don’t agree with, try to see their point of view and suggest compromises.
There is plenty of extra advice and information in our Young Person's Guide to the Stem Cell Transplant Journey.
Whether you are really close to your big sister or fight like cat and dog 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 been the person who donated stem cells for your transplant. They obviously did this because they wanted to help you 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 is not.
Our booklet Donating to Your Relative has been put together to help them work through these feelings.
Even if you did not receive your stem cells from your sibling, it will still be a really tough time for them too. They may be disappointed, frustrated or even angry that they were not able to be your donor. They may also feel unimportant and a little forgotten about if other family members focus on you and your recovery most of the time.
Don’t be too surprised if this causes a change in their behaviour. They might not be too friendly around you, behave nastily or even decide not to come and visit you. Although this can be hard to take, try to understand it’s their natural reaction to a very stressful situation. Be aware of their feelings and try to involve them as much as you can. Let them know they are important to you and that you appreciate their support.
‘My parents were worrying about me and my sister was completely on her own. Then she got in her head that she had to be strong because she did not want them to worry about her.'
Kate, had a transplant in 2015
It’s likely you’ll make new friends on your transplant journey. In hospital, charities organise support groups that encourage patients to get to know each other. Friendships formed here can 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.
It can be difficult to keep in contact with your friends from back home while you’re recovering from your transplant. 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 relationship with some friends changes and becomes 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.
‘At first I did not want my friends to know, but now I understand that the community of people you are in is important too.’
Kate, had a transplant in 2015
Seeing your old friends after you return home might leave you feeling anxious and frustrated in ways you were not expecting. Some of our patients have spoken about not being able to relax around their friends because of the risk of picking up an infection. They worried about appearing rude but at the same time felt like they had to protect themselves.
Here are a few things that other families and friends have found useful:
Getting support can help, either by yourself or with your partner and family. Look out for group sessions or courses at your local hospital or cancer support centre, or find out more about getting emotional support.
Getting some help at home can also take the strain. If you could do with extra help, get in touch with your local authority’s social services department or your GP to see if they can give you advice or assistance. You can ask social services for an assessment to see whether your loved one or you (if you are providing them with care) need any services.
Find out more about getting support if you’re close to someone going through a transplant.
If you have young children or grandchildren you may find that it’s tricky talking to them about a stem cell transplant and life afterwards. That’s why we’ve produced Lucy and the Good Soldiers, an illustrated book about transplant for children.
You could also ask your GP or transplant team for more advice. Macmillan Cancer Support offer more information about talking to children about cancer.
‘My children were at very vulnerable ages, eight and seven. It was important for me to explain that I was unwell, but that doctors were going to do what they could to make me better. They took it in their stride and they just continued with life as normal.’
Watch Johnny’s video about his transplant experiences.
Information published: 10/10/16
Next review due: 10/10/19