When my husband, Chris, was diagnosed with Hodgkin's [lymphoma] in 2022, we were reassured by almost everyone we knew that it was a straightforward cancer to treat. And for most people, it is. But that wasn’t our experience.
It was isolating and scary. We felt like Chris was the only person who'd ever been through this terrible experience with Hodgkin's lymphoma and it did make us think that he was going to die. Three years on, after several treatments and finally, a stem cell transplant, Chris is doing well. So, I wanted to share our story to reassure people. At the time, I would have found comfort in stories like ours, where things weren’t as straightforward, but they worked out. That would have been reassuring, because it was so awful and actually there was hope, we just didn't know it.
A long road to recovery
When Chris was diagnosed, the plan was course of chemotherapy and radiotherapy. But when they did an interim PET scan, it hadn't worked as effectively as it should have. It was like a body blow because no one had pre-warned us that that might happen, you know, ‘just be prepared Chris has a certain type of Hodgkin's which is more difficult to treat’ and so when they said it wasn’t working, it was a shock.
They said that he'd have to try something called GDP, and then he would need a stem cell transplant. But the GDP failed to get him into remission and in fact, his cancer got worse. That’s when he was transferred to UCH for the third line treatment - something called BVB, and the plan was for him to have BVB and then harvest his own cells.
I do remember feeling some reassurance when we got to UCH. The team are brilliant and they said, ‘no, you're not alone, this does happen’ and they said that Chris was the perfect candidate for a stem cell transplant. I remember feeling really reassured by that, because we just felt like all Chris's treatments were failing and it must mean that he was going to die. So, it gave us hope.
The BVB treatment worked and it got him into remission, but they couldn't harvest his own cells. I remember a nurse saying, ‘oh, I've not seen this before’, and again, I thought, ‘oh my god, he's going to die’. We waited to see if Chris’ body could recover enough to try again but during that time he unfortunately relapsed. So then they tried immunotherapy and it was the most incredible thing - he didn't even really have side effects and it got him back into remission. I remember looking at him, just before he had his PET scan, and thinking ‘you look really well’, and I couldn't bear to hope that he might be alright. We actually got married during that time. We were supposed to get married the year before, but we had to delay it because he wasn’t well enough.
So, he was back in remission and then they tried to harvest his cells again. They tried for three days but his poor body just couldn’t produce enough stem cells - they didn't even get above five, they were so low. We said to our CNS, Fran, ‘we're done with trying and waiting, can we just talk about finding a donor’, and that’s when she said, ‘you've already got one, and something's been set in motion’. It was such an enormous weight lifted. I felt like I could breathe. I remember thinking, ‘okay, so this isn't the end.’
Chris had his transplant at the very beginning of January last year, 2024. Of all the treatments that Chris had, the stem cell transplant was the most horrific to go through but it worked! He was in for exactly six weeks and he felt awful. I remember going to see him in hospital and I was shocked at how different he looked, but I was also prepared for it because I knew from looking at the Anthony Nolan resources what to expect. Those resouces were really, really, really good and there was advice about preparing for Chris to come home, so I was able to look after him well when he finally came home.
What helped
It was so up and down and I really struggled with my anxiety. One thing that helped was having Fran, our Anthony Nolan CNS. She was amazing. I also had the most amazing therapist, Helen, who was provided by UCH. I remember our nurse telling me ‘I think you need some help, you are carrying everything’. My mum had said that to me, but hearing it from a medical professional, it was transformational. I was like, ‘okay, so I'm not just an attention seeker’, which was how I’d felt at the previous hospital. When we found out Chris’ cancer had got worse after the last treatment, I started hyperventilating, and was basically told I needed to ‘calm down’ and ‘we need to focus on Chris’. So it was a relief to get that support when we got to UCH. They couldn't have looked after us better, they really couldn't.
Life now
After three years of ups and downs, I’m happy to say that we've had over a year of clear PET scans now. They’re weaning him off things and he only needs to go for check ups every three months now. They’ve been really happy with his recovery, and he looks so well. It's such a relief. We've been together since we were 19, so we've always been really close, and it's been so stressful. Before his scans I still get anxious. I won't sleep properly, I feel sick. Chris is different – he views it as completely routine, he says ‘I know how I feel in myself’. He is struggling to get back to normal life though, because he’s having issues returning to work. His job let him go so that’s been stressful too. But other than that, he's doing really, really well.
As for me, I’m running the London Marathon for Anthony Nolan next month! I'm not very athletic but I'm surprising myself. I've started to really enjoy the training. Chris used to be an elite athlete, and he motivates me and he's so supportive. I’ve got my running plan and I went out and bought some really good running shoes, which changed the game. It’s such a good cause and that's what motivates me too. Every time I'm like, ‘oh my god I can't believe I'm doing this’, I remind myself that I’m doing it for all the people who need to need to find a donor, like Chris did. Because of her, our whole world has been rebuilt.
Our Patient Services team is here to support you
If you or a loved one are struggling and would like support, you can find all kinds of information and support services on the page below.