It’s normal to experience lots of emotional ups and downs before, during and after your loved one’s bone marrow or stem cell transplant.
You might feel uncertain about the future, guilty about wanting to do more to help them, or even just overwhelmed if you’re providing lots of practical care.
‘I felt overwhelmed by everything that was happening. No one could say “it’s definitely going to be OK” and there was nothing I could do to change that.’
Una, whose husband Val had a stem cell transplant in 2007
But there are also lots of positive things that can happen after a bone marrow or stem cell transplant. Many families gradually come to terms with a ‘new normal’. Some find that the transplant brings them closer together and makes their relationships stronger.
‘There were good days and bad days, and we got through it one day at a time. We’re now out the other side and we are stronger than ever before.’
Helen, whose partner Nilush had a cord blood transplant in 2013
It helps to know what to expect. Making plans and asking your medical team questions can boost your confidence – and the answers could be useful for your loved one, as well.
Get financial and practical support
If you provide ‘regular and substantial’ care for someone over 18, you have the right to a carer’s assessment from the social services department at your local council. This is a chance to discuss what help you might need as a carer.
Read our blog with Carers UK for more information.
Practical support from your friends and family can give you more time and energy to support your loved one.
‘People are so generous, always asking, “How can I help? What can I do?’” And you get overwhelmed, because life doesn’t stop just because this thing has happened to you both. So sit down and write a list. If you need your garden waste collected and taken to the dump, put it on the list.’
Mariacristina’s husband George had a transplant in 2014, read more about her story in her blog.
Relatives and friends may want to come and visit, but it’s OK to say ‘no’ if it’s not the right time. You could ask a close friend or family member to be your spokesperson, catch up with them every so often, and ask them to send out an update to your wider friends and family.
Some people find that this gives them a positive focus at a difficult time. You could encourage friends and family to join the donor register, set up a charity fundraising page or volunteer. Find out more about getting involved with Anthony Nolan.
‘I wish that I had asked for support at the time. It wouldn’t have made Cherryl better, but it would have made things easier for both of us.’
Richard, whose wife Cherryl had a stem cell transplant in 2007
It’s easy to dismiss your own problems and worries when your loved one is going through a stem cell transplant, but it can have a big impact on your life.
You might need some separate support, especially if you have different needs and concerns. Share what you’re thinking – find someone you can talk to. It could be a friend, or someone trained to listen; like your GP, or a counsellor. You’re entitled to support from your transplant or psycho-oncology team, too.
Connecting with others who are supporting someone through a transplant can help:
‘If you’re struggling, there are other people out there who can help you. Just reach out when you need it, and don’t feel like you’ll be a burden.’
Read Sam’s blog about supporting his dad through a transplant.
Remember - it’s ok for you to take breaks, in the long run this will stand you in better stead to support your partner or family member.
It’s important to look after your own health and wellbeing as well – regular exercise and relaxation can help. You can also often access therapies such as massage, meditation or aromatherapy through your local cancer support or information centre.
Macmillan Cancer Support have more information for carers.
“I was lucky enough to get sessions with a counsellor, as I really needed to talk to someone outside of what was happening to us. The sessions really helped me to cope with uncertainty. All the unknowns were such a struggle for me.”
Read Mariacristina’s blog about caring for a loved one through a bone marrow transplant.
Having a stem cell transplant can change the normal pattern of your life and affect relationships, friendships and roles within your family. We have more information about what can help with this.
If you have children or grandchildren, it might be tricky to talk to them about what’s happening. We’ve produced a special illustrated book for children that should help. Macmillan Cancer Support has more information about talking to children about cancer. You could also ask your transplant team for more advice.
‘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.’
Read our blog with counsellor Phil
After their transplant, it’s likely that your partner will have some changes in their sexual feelings or function.
There are many different reasons why these sexual problems can occur, including physical barriers, changes in body image, complications of medication, and tiredness.
Because of what you’ve been through, you might feel differently about sex as well.
You may find that you gradually adjust to differences in your sex life. But you can also ask your transplant team to refer you and your partner on for specialist medical and psychological support.
It may help for you and your partner to develop a routine – make time for dinner, time to relax, and schedule in times when you’ll speak to other family members and friends or respond to their emails. This can help things feel more secure and predictable.
You might feel helpless or uncertain about how you can help your loved one through these tough times. Here are a few practical things which you could do if you feel up to it:
‘In addition to being beside my daughter, I also wrote cards to her. She was often too tired to talk but could read my words of love and encouragement whenever she picked up a card.’
Linda, whose daughter Helen had a stem cell transplant in 2013
What if their transplant doesn’t work?
Despite the best efforts of your relative, you and those around them, the transplant may not work. It may be that the cells from their donor have not been accepted by their body (graft rejection or graft failure) or that their original condition has come back (relapse). Their transplant team will be monitoring you closely for both these things and often there will be other treatments available.
This can be a really tough time for you and your family, but your transplant team will talk you through the next steps. Find out more about different treatment options.
In some cases, your loved one may not be able to have further treatment for their illness. Open discussions between with the medical team are an important way of making sure everyone understands the options and agrees on the best approach.
If someone you love has died during or after treatment, it can be devastating. You may experience a lot of strong emotions that can be difficult to cope with – shock, pain, anger, guilt, depression, and longing. Grief is a natural process, but it can be overwhelming.
‘I don't think the pain of missing someone ever goes away - I think you just get better at talking about it. The transplant offered hope at a very difficult time and gave me precious months with my sister.’
Annabella, whose sister Millie had a transplant but sadly relapsed and died in 2004
Some people cope best with help and support from family and friends. But it’s also normal to need some outside help. There’s support available through the Cruse Bereavement Care charity, the Child Death Helpline, and Macmillan Cancer Support. You can also find local bereavement support through the NHS.
Information published: 13/10/16
Next review due: 13/10/19