Hayley

I was 31, working as a freelance copywriter and living with my partner David. Around Christmas 2020 I noticed that even a sip of alcohol gave me pain in my shoulder and my back. I thought this was really odd, so Googled it (which I know you really shouldn’t), and something that came up a lot was ‘lymphoma’.
 
I did nothing about this for 2 or 3 weeks, and had no other symptoms at that time, but it troubled me so I decided to go to my GP. Blood tests were organised which came back normal. I really didn’t want anything to be wrong, so these results reassured me. 

Looking back, I didn’t say anything about my suspicions of lymphoma to my GP. In my mind I worried that by saying something I would be undermining him. But if I had mentioned something would he have told me about the symptoms of lymphoma?

Don't be afraid to say what's on your mind.

Hayley

About six months later I started to develop other symptoms, like itching without a rash. This came and went and it wasn’t until a few months later, when I found an enlarged lymph node under my armpit, that I went back to my doctor. By now it was November 2021 and I am still cross with myself that I hadn’t joined up the dots and delayed returning to the GP. 

My doctor referred me to the breast clinic because of where the lump was located. I had a biopsy taken and waiting for the results was a really worrying time. By now I had convinced myself that I had lymphoma, so when I had a diagnosis of Hodgkin lymphoma it wasn’t a shock. In many ways it was a relief to know what was wrong, rather than living with uncertainty. 

Having a clear diagnosis meant that I could now do more research, but this time I made sure I only looked at trusted sites like Lymphoma Action and the NHS. I encouraged my family to look at the information available on these sites so that they understood more clearly about Hodgkin lymphoma.

The haematologist explained that this was a very treatable type of cancer, which was reassuring. I was offered three treatment options; I wasn’t expecting to have a choice and found it rather overwhelming. I could have ABVD chemotherapy, escBEACOPP or take part in a clinical trial which was investigating whether an immune checkpoint inhibitor given before chemotherapy is a safe and effective treatment for people with untreated advanced classical Hodgkin lymphoma.

My instinct was to enter the clinical trial, and I liked the idea of being involved in something that could help others in the future. But my lymphoma was at an advanced stage and I just wanted to get going with treatment as soon as possible. Taking part in the clinical trial felt like it would delay things which didn’t feel right for me. 

I had a conversation about fertility before treatment began and it was explained that ABVD was more likely to preserve my fertility. Although I’m fairly sure I don’t want children, I think it is an important discussion for someone of my age to have. 

I was treated with ABVD chemotherapy (doxorubicin (Adriamycin®), bleomycin, vinblastine and dacarbazine). I coped incredibly well with minimal side effects. So much so, that I wondered if the treatment was working. I had long hair and was advised to have it cut, but decided not to. I let it fall out gradually, but eventually gave in and cut it. I also struggled with fatigue and quickly recognised a routine of when I would feel most tired. As a freelancer, I decided to continue working, and although fatigue meant I had to pace myself - and certainly didn’t feel at full capacity - I felt it gave me something else to focus on and I feel it helped me mentally.

I had a PET scan after two cycles of ABVD and as a result the bleomycin component part of the treatment was removed for the rest of my treatment. A CT scan at the end showed I was in remission. It was at this point that I cried for the first time. Throughout treatment I was pragmatic and took a ‘let’s just get on with this’ approach. It was once treatment finished that all the emotions rushed in and I felt lost. 

Everyone around me was incredibly happy and relieved that the treatment has been successful and wanted me to share the joy. I just didn’t feel the like celebrating and was struggling with the psychological effects of what I had been through. 

My body coped well, even though towards the end of treatment, fatigue was increasing and I was needing to sleep for longer.

My treatment was during COVID and it could have been easy to isolate myself. I live with my partner David and at first I felt really cautious, not wanting to see anyone else for fear of picking up an infection or COVID.

My family live nearby and once treatment had finished, family and friends expected me to return to how things had been beforehand. But nothing was the same, and I just wanted to keep myself safe. My clinical nurse specialist said that I shouldn’t cut myself off entirely, so gradually – and ever so carefully – we have started to see people. We choose to meet outdoors and if we are eating out, choose an outside table. 

My body let me down by becoming ill, but the strength I have has been amazing.

Hayley

Unfortunately, a PET scan three months after the completion of treatment showed that my lymphoma has returned.

Although I am facing more treatment, I feel confident in my body to handle whatever is to come. 

Photo: David Guest

Published in Lymphoma Matters 124, Winter 2022 and published on the website on 16 November 2022