Clare

Clare talks about her diagnosis and treatment of peripheral T-cell lymphoma and how she is finding moments of joy within the current uncertainty.

Clare

Clare talks about her experience of peripheral T-cell lymphoma. Three years on, she is back teaching and exhibiting her art with a very different perspective, thanks to her life-changing experience.  

Over the last weeks, like everyone, I am having to adapt and do the best I can in the circumstances. I am shielding, which is a constant reminder of my vulnerability, and the experience echoes some of the precautions I had to take during treatment, especially during my stem cell transplant. So it has made me quite reflective. My mantra has always been ‘this too shall pass’ and I find it helpful again. I am using all of the skills I have to find moments of joy within the uncertainty. 

I was 33, and looking back I only recognised my symptoms in hindsight. I was getting more infections than usual and losing more weight than I might have expected. I work in a school and was at the gym every day at the time, so these symptoms alone weren’t enough to ring alarm bells. I have an auto-immune disorder so I’m used to feeling under the weather and tend just to keep going. Then my stomach started to swell (on reflection because my liver and spleen were affected) and I started having night sweats and itchy lower limbs. It was only when I started to get hand cramps accompanied by a really high temperature that I thought I ought to seek medical advice. I went for blood tests and ended up in A&E with tachycardia (my heart beating more than 100 times a minute) and suspected sepsis. 

Doctors thought it was a viral infection but I knew by now there must be something underlying. I had appointments with immunology and haematology specialists and was booked in for a PET scan. 

I was diagnosed with peripheral T-cell lymphoma – a fairly rare form of lymphoma. The specialists at my hospital hadn’t seen anyone else with it. 

I had six cycles of CHOP chemotherapy treatment, four weeks apart. Each time my side effects would follow the same pattern: sick the next day, then sore and achy (especially my jaw) for a few days. Then I had a two-week window where I felt fine. I had loads of energy and continued to work through the first three cycles. But then I did stop teaching because of the risk of infection. So during the two-week windows I felt well, I decorated the house and treated myself to a convertible car. This was something I’d always planned to do when I was older – but now I had a different perspective on life. And in fact I felt quite positive and less stressed. Little things no longer bothered me. I was focused on getting well again.

 
Really early on in the process, I was paired up with a buddy thanks to Lymphoma Action. Although I had a pretty rare form of lymphoma, they managed to find someone a similar age to me who’d had the same peripheral T-cell variety. We emailed one another and spoke over the phone. I didn’t need to call on her often, but it gave me peace of mind to know I could. It really helps to be in touch with someone who has been through it.
Clare

The chemo successfully removed the cancerous cells but now I needed a stem cell transplant. Without that, I was told that I would almost certainly relapse. I could have had an autologous stem cell transplant using my own cells, but there was more chance of a relapse. So we decided on a donor (allogeneic) stem cell transplant. We found a match and I began to prepare for the procedure. This involved spending five weeks in isolation during the transplant. So I decided to make it like a retreat! I took in my own duvet instead of using hospital sheets and blankets. I put posters up all over the walls – like I was at university again! I brought my Playstation and a load of books and a diary.

I’m an artist but at the time I just couldn’t do it – so I did role play games instead to fire up my imagination and help me escape. I also properly planned ahead for the first time since I’d been diagnosed. 

I’d been functioning from treatment to treatment, only ever planning two weeks ahead, but now I wrote down all my targets, hopes and key dates. I Skyped with my husband every day so I could see him and our cats - though they never acknowledged me! I tried to exercise every day and always got out of bed to eat in a chair by the window. As I got weaker it became more difficult. 

The transplant was a success. I had no side effects and now I have regular check-ups. I’d gone back to a four-day week at work and spent the other day developing my art business, creating, selling and exhibiting. I’d always wanted to do this but teaching can be all-consuming and I was nervous of not having a stable income. My lymphoma experience has helped me find a way to make it work. 

During this period of shielding, I am really busy with school work, working from home creating resources and videos for remote art lessons. I’ve been using my down time to create portraits of people and using art to reach out and connect with people and hope I am able to make someone’s day through my portraits. As I can’t access my studio right now, I have had to change my art practice to accommodate the new space and have been exploring lino cutting.

Find out more about Clare’s art by searching 'Clare Morgan printmaker' or find her on Instagram@curiousinkyme