Helping your partner through their transplant journey has probably become the most important thing in your life. Although you are probably happy to do it, it can still be difficult and demanding, especially if you also have to earn a living and look after your family.
Just as your partner has had to get used to being less independent, it can take time for you to adjust to your new supportive role. It’s understandable that you might find it hard to cope with this responsibility, while also worrying whether they’re getting better.
Get informed – Finding out more about stem cell transplants and the potential challenges that lie ahead for you both will help you feel more in control of the situation. It will help you to prepare for all possibilities and reduce the chance of something unexpected happening. Your partner’s medical team will be happy to answer any questions you might have, at any point.
Financial and practical support – Your partner may need a lot of care from you as they recover from their transplant. If you need to reduce your hours or even give up work temporarily to do this, it could have a big effect on your finances. The government provides various financial benefits that you might be eligible for, including Carer’s Allowance.
Your partner’s medical team should be able to put you in touch with social services, so they can look at your situation. Our Managing your finances page has more information and you can also contact Citizen’s Advice for further support.
Accept help – Support from friends and family with household chores and other daily tasks can give you more time to care for 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
Sometimes you might feel helpless or unsure about how to help your loved one through these tough times. Here are a few suggestions you might find beneficial:
‘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
Many partners feel guilty about admitting to their stress because they think they should always be strong for their loved one. However, it’s perfectly ok to talk to them about feeling this way, and it will benefit your relationship in the long term.
Enjoy a bit of ‘me’ time – find the time and space to enjoy things independently of your partner. This might be simply phoning a friend for a chat or re-starting a forgotten hobby. Nobody will judge you for taking some time for yourself. It will reinvigorate you and give you fresh energy to tackle the challenges ahead.
You need to make sure you’re physically looking after yourself as well as your loved one. If possible, try to maintain a healthy diet, sleep well and exercise regularly. It will help to make you feel better.
You might need emotional support too. If you would prefer to talk to somebody else about how you are feeling, there are options available. Your partner’s medical team can put you in contact with a therapist, or you may benefit from sharing your story with people going through a similar experience. Your hospital and various charities organise local support groups that you can get involved with. You can also get advice online from the Anthony Nolan Patients and Families Forum.
'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 life and affect relationships, friendships and roles within your family. We have plenty of advice and support to help you address these changes within our sex and relationships and family sections.
If you have children or grandchildren, you might find it tricky to talk to them about what’s happening. We’ve produced an illustrated story book called Lucy and the good soldiers to help explain. Macmillan Cancer Support also has information on talking to children about cancer.
‘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
Despite the best efforts of everyone involved, your partner’s transplant may not work. Their donor’s cells might not have been accepted by their body (known as graft rejection or graft failure) or the original condition might have come back (relapse).
This can be a really tough time for you and your family, but your partner’s medical team will talk through what happens next and the possible treatment options for your partner.
It might not be possible for your partner to have further treatment to cure their illness. At this stage, open discussions with their 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.
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: 26/11/18
Next review due: 26/11/21