Claire and Martin

I’m a carer for my husband Martin. Our story began in 2017 when he was diagnosed with Hodgkin lymphoma, but unfortunately the lymphoma has relapsed on more than one occasion. My experience of being a carer has changed over the years and my approach now is very different to back then. 

Looking back, I felt I had to cope with and do everything, and ended up burning myself out. Now I have strategies and coping mechanisms to help, borne out of experience. Most importantly, I now realise I need to care for myself in order to be strong enough to care for Martin. 

We had moved to the New Forest some years ago for a new life in a new part of the world. Our set-up was that I am the breadwinner, and Martin cares for one of our two daughters as she has disabilities. This worked really well for us all and I was thinking of taking on a promotion at work. 

In December 2017 Martin started to feel poorly and woke with a huge swelling on his neck. He was tested for glandular fever, which came back negative, so he was referred to ENT on an urgent two-week referral. This led to a diagnosis of stage 4 Hodgkin lymphoma.

Martin started treatment with ABVD chemotherapy and the PET scan at the end showed that he had responded to the treatment. 

In 2021, Martin started to feel ill again, and this time we knew the signs. We got back in touch with the medical team and a CT scan revealed the Hodgkin lymphoma had relapsed. The plan was to do another course of treatment and then go for harvesting in preparation for a stem cell transplant.

I remember taking Martin for his first round of treatment.  I dropped him off and then headed to work. He phoned me shortly afterwards to say that the CNS wanted me to be there as they were going to go through paperwork and talk about the transplant. Martin has Aspergers and sometimes doesn’t take all the information in. I was there about two hours and that was actually a brilliant meeting where I really understood the approach to Martin’s treatment.  I was fine while in the hospital, but I went home and had a complete meltdown. How can I do all this? I felt tired and ill, stressed and helpless. I felt I was the only one who could keep everything going for the family. 

Looking back, one of the biggest problems was that I didn’t take any time off. I had told work about Martin’s situation, and they were understanding and supportive; I cannot fault them. But I am my own worst enemy. I feel that if I don’t keep going, then I am a failure. I was working, then heading home to sort everything out there. It took my boss to tell me to take time off, before I did so. 

Martin initially had the immunotherapy drug Brentuximb, but that did not work, so he went on to have ICE chemotherapy. At the time he was due to have the transplant but he was too poorly to go ahead with it. Instead they gave him GDP chemotherapy and two weeks of radiotherapy to get him into remission.

In November 2023, Martin started to feel unwell again, and again we were facing a relapse of his Hodgkin lymphoma. They decided to treat him with another immunotherapy, Pembrolizumab. The first scan showed it had gone quite well and we were hopeful that this time he would go into remission and then straight to a transplant. But my phone rang. The oncologist tended to call Martin directly when it was good news, but me when it was more complicated or bad news. This time the scan results were not great, so we needed to go in to talk about Martin’s options. 

But the amazing team had a plan. They would give him two rounds of GDP and then straight to transplant. I can’t fault the medical team; they had one plan after the other. But all this took its toll on Martin’s mental health and he was struggling being in hospital for prolonged periods of time.

We were fortunate that the hospital treating Martin offers ambulatory care. As we live within 30 minutes of the hospital, we were potential candidates for this, which seemed like a good option now. Martin could have his treatment at home, so long as I agreed to look after him and bring him in if there were any problems. 

Our daughters are 28 and 21 and we have been open with them about what has been happening. Just before the transplant, I arranged for the three of us to go and see the CNS, who explained about Hodgkin lymphoma, everything that had happened to their dad and where he was at now. They gave us so much time, which was really valuable for us all.

A chemo line was fitted and Martin now had his own chemo bag to deliver his drugs twice a day. We named the chemo bag Brian to make it less frightening and even made him a bed so that he could be safely put down. I recall sitting having meals while we listened to the whirring of the chemo bag working, albeit it only lasted 15 minutes.  

For the transplant, after the cells went in, Martin was in hospital for 12 days and spent three full days just sleeping. He was so fatigued, had diarrhoea and went off his food. But he didn’t get any infections and his medical team were impressed with how well he had done. 

We knew how severe the side effects of the transplant could be and were frightened about what we were taking on. I did wonder how I was going to keep the house, be there for Martin and look after our daughter. I found Macmillan really helpful in giving advice around benefits and was able to claim Universal Credit because I recognised by now that I couldn’t work as well.   

This time though I took a different approach. I decided I really needed to care for myself. I have never been good at asking for help, as I always saw myself as the carer. But I now knew I needed to ask for that help; the past experiences had shown me that I had worn myself out both physically and mentally. I now needed to be even stronger, so caring for myself was a priority. The first thing I did was speak to the Assistance programme at work and asked for some counselling. They assigned me someone who had experience of talking to carers, and she was really helpful. I felt out of shape, so went back to Slimming World and started running again which always made me feel much better. No way were we going to get through this unless I was as strong as I could be.

I ended up losing two and a half stone and felt so much stronger and healthier. No matter how I felt, I would get out of the house or go on a treadmill. 

I joined the Lymphoma Action carers group and would be lost without them now. I used to just read the comments and be more of an observer, but I had a question I wanted to ask and got so much valuable feedback from people. I still recall someone telling me that people like to be asked for help, which was quite an empowering message.  

It feels like we are out the other side now, but my mind is now in a different place. We don’t look too far ahead. We have family in Australia and would love to plan a trip, but we aren’t there just yet. I think I’m being a mixture of protective and cautious about what we plan for the future as I don’t want to be disappointed or have to sort out cancellations. Instead, I decided to improve our home a little to make it a nicer space for us all, which has been uplifting. 

Being a carer for someone with lymphoma can turn your world upside down. It feels like all the stability has gone. But I have learnt that it pays to take all the help you can get, whether that is offers of help from people or giving counselling a go. For me, focussing on my health and wellbeing put me in a much stronger position to support Martin and the rest of the family. On our first experience with lymphoma, I felt I could only focus on Martin and my daughter, but I have learnt that I need to be the strongest I can be. 

Are you a carer? We would love to hear your views and experiences of supporting a loved one through lymphoma by completing our survey.