Emilie’s husband had his stem cell transplant in 2014 for blast crisis chronic myeloid leukaemia (CML).
She spoke to Caroline in Patient Services about caring for her husband while dealing with anxiety, and feelings of guilt about her son being raised by other family members.
Can you tell me about when Ben became unwell?
It was in 2014 and Ben had a lot of muscle pain. We are both teachers, our son was only two years old, and Ben was incredibly tired. We put it down to that end of term feeling. One day we took him to A&E because his hand became completely swollen. The next morning, Ben was diagnosed with leukaemia.
I don’t even know how to describe it without saying that our whole life completely flipped overnight.
What was it like when you found out he needed a stem cell transplant? Was that early on?
It wasn’t straightaway. By the end of the first round of chemotherapy, we were told that the best option would be a stem cell transplant which was a bit of a shock. We’d already prepared ourselves for Ben being in hospital for quite some time, but now he would be having all his treatment at Bristol Hospital which was over an hour away.
When Ben was in hospital having his transplant, what was that like for you?
The most difficult consideration was when we went to Ben’s initial transplant meeting and were told that children under 11 couldn’t be in the hospital at all, which really threw me.
Thankfully, I have a wonderful family and, within a day, a rota had been made to look after our son, James. He stayed in Cheltenham with a range of family members and friends who took over parenting for us completely.
It’s something that I think I’ll probably feel guilty about forever. But, at the time, James just accepted it because he had great aunties looking after him, or Grandad. His world didn’t spin as much as it potentially would have had he been a bit older.
Ben with their son James
You mentioned earlier about your support network – who were the people you turned to for help?
My dad said he would take whatever time off needed to be with James. My mum was also wonderful and came up to Cheltenham as much as she could, and I’ve got three very well-placed sisters nearby! Along with some fantastic friends, they took over my responsibilities, and all the things that could have got in the way of me being at the hospital as much as Ben needed me to be.
You dealt with anxiety during your husband’s transplant. When did this become a problem for you?
The transplant triggered it massively. I realised that I was just becoming more and more anxious, and almost more anxious when things were good, because I was worried about what was going to happen. That developed into anxiety where I started to worry about everything all the time.
Did you do anything to take care of yourself or help manage your anxiety?
I made some changes in my life to not put myself into stressful situations as much as possible, which sometimes meant not going to social events where I felt I couldn’t completely relax.
At one point I went to see my GP about it and found that having some really good friends around, and some very understanding work colleagues, helped. I still feel anxious some of the time, but not all the time.
Did the medical staff communicate with you well if you had questions or needed support?
They were incredible. It sounds daft, but Ben and I never asked lots of questions because we unanimously put our faith in everything they were doing. They have always been so clear about things, and explain things so well, that I never feel we walk out of appointments with lots of questions.
You were aware of our patient and family blogs, and threads on our Patients & Families Forum. Did you come across these during the transplant process or post-transplant?
I’d been aware of the Anthony Nolan support and had relied on it, reading different blogs and threads on the Forum in the build-up to the transplant, and contributed to the forum on one or two occasions.
I went to one of your Patient & Family Education Days while Ben was having the transplant (only two days post-transplant, in fact). I’m so glad I went. I met a lot of people who had been through transplant and, at the time, Ben and I didn’t know anybody who had had blood cancer or a stem cell transplant. To see people who had been through it and come out the other side was such a positive experience.
How is Ben’s recovery now?
By the end of 2014, it had been a success and he was recovering. The complications began in 2016.
They really impacted on Ben’s mental health which was difficult. But he is incredible. He went to hydrotherapy and physiotherapy, got his strength back and just kept going. Last year was really the first time I felt that he started recovering again, getting his fitness back and putting some weight on.
He’s just unbelievable. Watching him go through the last few years with so much determination and strength has made me prouder than I could have imagined. He’s also completely bonkers, and can be quite spontaneous now which he has every right to be!
Emilie, James and Ben.
How would you describe life now and how is your anxiety?
I think it’s much better. This time two years ago, a holiday was out of the question. But last year we drove abroad. I had maps of every hospital along the route and a phrasebook. I’d written down all the things I needed to say if there was an emergency.
This year I realised we’re going away soon and I feel totally relaxed about it all. We’re flying which we’re really excited about. We’ve obviously taken some precautions – Ben’s having some extra immunoglobulin which he has monthly, and we’ve bought travel insurance which has cost a decent amount - not far off the cost of the holiday!
We do live a very different life to before. We’re very happy and the three of us work well as a team. It’s so nice to feel like that after four years.
What advice would you give to others going through what you as a family have been through?
Be as kind to yourself as you possibly can. There are so many things that you just don’t need to worry about when you’re going through that sort of situation. If you’re a carer then take as good care of yourself as possible. It’s easy to say that – I don’t think I took amazing care of myself, but I tried to be kind. You can worry about getting back on track when it’s all over.
Keep people around you who are kind and don’t worry about keeping other people happy or making sure you’re meeting their needs. Just concentrate on your own, pull together as a family, and worry about all the rest at the end of it.