Struggling mentally and causing conflict with partner

Life after treatment
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Im about 70 days post stem cell transplant and allthough I’ve been physically doing well, mentally im faling apart. This appears to annoy my partner as they constantly reminded me that I need to just get over it and live in the now or they don’t understand or another one is everyone else has problems not just me.I understand that this has been just as stressful for her but feel alot of the time shut down.

When i was in hospital I had a bad mental health relapse which has made the team at there contact my mental health team up here for immediate action as they are worried how bad my state is.

Atm I’m worried about alot, glasgow said my chimerism levels were lower than expected , but I didn’t understand they mentioned 98% and then 41% if anyone can help with that. My son is haven’t seen except 3 times this year and I miss him dearly but something comes up and he cancels. His mum states he genuinely wants to see me. I had to move in with my partner and that was a mess as the landlord despite my circumstances is being funny about the flat and using my deposit for every little detail. All my things from my flat are in my partners living room and I dont know wat to do with it as I don’t feel at home here yet as I stil see it as her house and have to ask.

Then now as I was crying about my son cancelling she said” me and my children have had to make a lot of change because of all this” that hit me hard as I now just feel like a burden and everything that has happened to be added on due to be is a bad thing for everyone. I feel alone all the time as its just me during the day till she’s back from work and its so hard

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Dear @Lopsided - thank you for sharing how you are feeling. It sounds like there are a lot of things going on and it’s such a difficult journey to navigate both physically and psychologically. Please know you are not alone.

Have you spoken to your mental health team about how you are feeling? You can also speak to one of our nurses on the support line on 0808 2080 888. We are here for you, so please keep posting, we understand.

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Dear @Lopsided

Thank you so much for posting about, what sounds like, a really challenging time for you following your transplant. I am glad you have been able to reach out to the community forum here.

I would start by saying that day 70 post stem cell transplant is still really early days and generally the first 100 days are still challenging from both and physical and emotional perspective. Please don’t be hard on yourself as you have already gone through a huge amount.

It may be that it would be helpful to talk to your partner and your children about how hard you are finding this recovery and that you need their support. If it would be helpful you Clinical Nurse Specialist may be able to help with this conversation and explain how tough recovering from a stem cell transplant is. We would also be happy to chat to you on the support line if that would help: Blood cancer information and support by phone and email | Blood Cancer UK

Page 124 Blood-stem-cell-bone-marrow-transplants-seven-steps-seven-0617.4.pdf documents the emotional effects of a stem cell transplant and page 111 onwards demonstrates all the things to look out for after the transplant too.

I would also suggest mentioning to the transplant team how you are finding the recovery and may be able to support you with reassurance and counselling options.

It is understandable you ask the question around chimerism’s being lower that the team would like. On page 105 of our Blood-stem-cell-bone-marrow-transplants-seven-steps-seven-0617.4.pdf we say: Your blood and bone marrow will be tested regularly in the months after your transplant. Sometimes, these tests may show that your bone marrow contains a mixture of your own stem cells and those of your donor (mixed chimerism). This is quite common, but does not mean your cancer or blood condition has returned.

our colleagues at Anthony Nolan also say:

After a stem cell transplant, doctors regularly measure your chimerism level. This tells them the ratio of stem cells from your donor versus from your own cells. Ideally, your chimerism should be as near as possible to 100% donor cells.

If your chimerism level stays consistently low or keeps dropping, it means you don’t have enough donor stem cells in your body. In this case, you might risk relapse or graft failure. Doctors might give you a DLI to cause an immune response which can push the chimerism up to an acceptable level.

It’s important to remember:

  • Not everyone will achieve 100% donor chimerism. However, this is completely fine as long as it remains stable during recovery.

  • Doctors will need to monitor your chimerism over a period of time before deciding to offer you a DLI.

  • If your chimerism drops, it does not necessarily mean you’ve relapsed.

I do hope this helps a little and please don’t hesitate to get in touch if you should need a chat.

Take good care

Gemma

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