‘I’ve personally found it harder this year than when we were actually going through it. Which sounds a bit ridiculous, but during his illness I just knuckled down and got on with it. In April 2018, it will be two years since his transplant. Afterwards you are left to process all the memories. All the experiences. You are coming to terms with it really. We both are.’
Victoria’s husband had his stem cell transplant in 2016 to treat Chronic Myeloid Leukaemia. She spoke to Billie in Patient Services to share her experiences of caring for someone through a transplant.
Can you tell me about when Alex became unwell?
I’d say I started to twig something was wrong when my mum said ‘Alex looks really poorly’, which was in November 2016. We let Christmas get out of the way and he went for a blood test. That same evening, close to midnight, we got a knock at the door from our out-of-hours doctor telling us that Alex had leukaemia.
What was it like when you found out he needed a stem cell transplant. Was that early on?
That was on the Monday after being diagnosed on Friday night. So we knew that was coming. I’d heard of Anthony Nolan in the press, but I didn’t really understand what a transplant was. We had a very good consultant who gave us lots of information though, which I felt a responsibility to relay word for word back to my in laws. I was the information gatherer.
Did you find that the medical staff answered your questions well?
Yes. Really well. I cannot get over how incredible the Haematology team at Nottingham City Hospital are. They have the most fantastic unit. There was plenty of information available to us. Looking back there was probably more information out there, but perhaps I didn’t want to know more.
We went to a Bone Marrow Transplant (BMT) information meeting held at the Maggie’s Centre before the transplant. I remember that being quite traumatic. It was a huge smack back to the reality of what he was about to go through. And it was isolating as we were the youngest ones there and the only one with a child. Our daughter Lydia was only 14 months when Alex was diagnosed.
As a result, although we got lots of information, I felt that Maggie’s wasn’t a place I wanted to spend time. Which in hindsight was a real shame, as I could have really used the support, but going to that first meeting there really represented the harsh realities of a transplant, and I didn’t go back.
When Alex was in hospital having his transplant – what was that like for you?
Terrifying. I remember that leaving him there was the hardest. But at the same time, I felt a strong pull to leave as I wanted to be a mother to my daughter. That push and pull was exhausting.
Who was your support network – were there people you leaned on for help?
My mum moved from Oxford for three weeks while Alex was in hospital to help with Lydia, and that was amazingly helpful as it meant I could be with him more. Alex’s parents were really helpful round the house when he got home. I didn’t want to rely on them for child care too much, as I felt they had enough to deal with. I remember my brother-in-law and his wife took Lydia out for the day, others mowed the lawn and took the dog out.
People did offer to look after my daughter a lot more when Alex was out of hospital. Looking back I wish I was a bit more honest with them, as I kept just saying ‘no, no, no’. But the reason behind that was because Lydia was my support. Poor little thing holding that on her shoulders! But she was. And as soon as she was out of my sight, I fell apart a bit. She kept me going.
It’s also important to mention my friends – as they were amazing. Three fabulous friends in particular who were always there for me. I couldn’t have done it without them.
What was it like when Alex first came home after the transplant?
We were fixated on getting him home. Not really realising that was actually going to be very tough – It was scary and emotional. I think for Alex, it was especially emotional seeing our daughter, as at that age in the four weeks they had been kept apart, she had grown up so much.
It was a relief for me to have him home though. I thought ‘I’ve got him now, I can look after him how I want to’. In hospital, the food side of it was tricky, I know they can’t cater to every individual, but they were constantly trying to get these milkshakes down him and he hated them! It was frustrating to watch.
In what ways did you have to care for Alex when he was recovering from his transplant?
As I’ve mentioned, Alex’s eating was a big thing in recovery. He was slim to begin with and very conscious and worried about not losing too much weight with his lack of appetite. I wouldn’t do a big shop, every day Alex would let me know what he thought he could manage to eat, and I would put Lydia in the push chair, head up to Tesco for what he wanted and then cook.
How exhausting for you! What an awful lot to do.
Yes, I don’t really remember what I ate during that time! I used do Alex’s first, and if Lydia would have that too it was a win, but sometimes it was three separate teas. They like me at that Tesco now! I took a lot of time researching how to add fat into his diet – it was full-fat everything for a while to try and help him get his strength back.
It sounds like his lack of appetite was a real worry for you and him. Was it explained to you that this was an expected side effect of a transplant?
We had the information, but it was still hard to go through. I know looking back he wished he hadn’t fixated on it so much. I really wish post-transplant that it was hammered into us that once he came off cyclosporin things would improve. I noticed a difference in his appetite within two days of coming off it! It was mentioned that he’d feel better, but not how quickly and how amazing it would be! I wish that message had been clearer with regard to his appetite. It might have saved some worry.
Preparing Alex’s meals was a big way in which you cared for him. Did you have to offer any other practical support?
He had a lot of sickness. Which I helped him with when he was very weak. So that meant helping him back and forth to the toilet. I also had to change the bed sheets more often, clean and disinfect everything.
That is a significant shift in the dynamic of a relationship – to become someone’s carer. Can you tell me how that was for you?
I’ve always had that side to me. I like looking after things and people. It’s hard to say how it felt as I didn’t stop to think about it. I was so driven by the desire for him to be better. It was the only thought I allowed myself to have. Husband and wife stuff had to go to one side; we just had to crack on.
Like today, I’m sitting in a coffee shop talking to you while Alex is swimming with Lydia. I didn’t know if that would ever get to happen. For ages, he couldn’t do that with Lydia due to the risk of infection. But back then, that desire for this kind of normality, that we are lucky enough to be having today, took all my focus and pulled me through.
Oh, I didn’t do anything. I know I should have.
Did you find people in your life expected Alex to be ‘better’ after transplant?
There was an element of that. There is a huge part of recovery from transplant that goes unseen, and that is the mental recovery. I have flashbacks sometimes. And every single day Alex thinks about being ill. It’s not ‘over’ for us. I don’t know if that will fade with time. He looks fabulous, he’s running, he’s got a new job and people expect him to better because of what they see.
Were either of you offered psychological support?
Alex was. In fact, we both were, but he felt a bit let down by it so I never took it up. He didn’t find it helpful. He was so upset about the possibility of relapse and he didn’t feel the counsellor gave him much. She just listened.
I’ve been to see counsellors this year independently – but I can’t say I’ve had a better experience either. Perhaps it’s not the best thing for us, maybe we need support groups or something else. I’m not sure.
Support groups can be hugely beneficial. It’s also worth mentioning that the timing of counselling can affect how helpful it is in your life. In counselling, you are working on yourself, and although people often find it beneficial, it also requires a lot of effort and commitment, and so sometimes it’s a case of it not quite being the right time for that work to be able to happen. Perhaps your previous attempts weren’t the right time for you guys, especially for Alex, as you mention how upset he was.
Yeah, perhaps. Alex is very emotional now. It’s definitely a new side to him. I don’t judge him for it, he’s been through a hell of a lot, and over time it’s getting better.
What further support do you think families should have after transplant?
Our BMT nurse, Lynn, was amazing. I must have rang her so many times! But after transplant, I wish there was more support. Someone that you could make appointments to come in and see. More focus on the recovery of our normal lives.
I signed Anthony Nolan’s petition on post-transplant care, as there does need to be more at this point in recovery. And Alex really wanted to speak to someone like him who’d been through a transplant.
It sounds like you weren’t aware of our support services for patients, we have our Patient & Families Online Forum where you can talk to other patients.
That might have helped. When I look back on it, I wish I’d made more of an effort to find more experiences people had shared online, like this blog. I know I would have got something from it.
How would you describe life now? What’s changed?
We are trying to introduce new experiences to our lives and live for the moment. We went to Disneyland Paris this year, which was great, but really, everything has changed.
I remember having a phone call with a friend sat in the garden one night. I said ‘ How am I ever going to come to terms with this?’, because you’ve got to kinda of say goodbye to your old life. Your old selves before cancer. You can’t go back.
It’s made us closer in many ways, which is positive. I’m a lot more protective over him though, which is probably annoying! I worry about him. Nearly two years on. I worry.
It’s always been in my character to worry, but this experience has increased it. I would never want to stop him from doing things, or control him in any way, so I keep it to myself, but it is a change in our relationship.
Is there any advice you’d give others going through what you have been though?
Talking to people helps. I wish I’d done that more. I used to go off for walks, alone with my thoughts when visiting Alex at the hospital, and we had that lovely Maggie’s Centre right there! I could have gone in, got a cuppa and have someone listen to me. I’d have changed that. If I could go back, my advice would be to seek out those opportunities. Ask your partner’s CNS what’s available to you. You don’t have to carry it alone.