Joel

I went through a break-up just before I was diagnosed with stage 4 Hodgkin lymphoma. I had to navigate moving house, deal with a break-up and get used to being a single dad. it’s had a profound effect on my life and I’d like it if my story can help others.

Joel

I was 28 and training to be a hairdresser. Things were going well with my career and I had just won the ‘One to watch’ hairdressing award. 

In late 2022 I started to get unwell. I was getting colds that were just not shifting and I felt fluey a lot of the time. I was also coughing a lot and pulling muscles; looking back I was in quite a bit of pain. I have asthma and wondered if I was having allergic reaction to things.

The coughing got worse, and I noticed blood. In February 2023 I went to see a doctor who was concerned about my symptoms and gave me steroid treatment and arranged for me to have an X-ray. 

The steroids made me feel much better, but I was told I was on a cancer pathway, so more tests would be carried out, including a CT scan.  

I have two sons who are 7 and 4 and my wife and I had just broken up. We were still navigating how to make things work and I was sharing the childcare on a 50/50 split. 

At the end of March my youngest son broke his leg and was in hospital. I stayed with him overnight and had an appointment at the hospital the next day to discuss the results of the tests. I remember walking through the corridors to that meeting and suddenly every poster was saying ‘cancer’ on it. Up until that point, I had not been concerned about things, but suddenly I had a sense that I was heading for bad news. 

I was told that it looked like I had Hodgkin lymphoma but that they would need to do a biopsy and more blood tests to confirm the diagnosis and stage. Chemotherapy was scheduled for the first week in May, but when the results came back, they said they wanted to bring that forward as the Hodgkin lymphoma was more advanced than they had suspected.

I was told it was stage 4 and that it was in my neck, chest and groin. I had never heard of Hodgkin lymphoma and read the book I was given and then looked online to get as much information about it. I needed to find out what I was facing and was learning about a condition I had never thought of before.

Now I know more about Hodgkin lymphoma, I can see that being a young man didn’t by any means make me immune from having this type of cancer; in fact I fitted the profile. 

I was to be treated with six cycles of escalated BEACOPDac chemotherapy. I had a week of oxygen as the tumour in my chest had closed in to my windpipe, making it difficult for me to breathe. The first three sessions of chemotherapy were OK and halfway through they did a scan to see whether I needed all three of the cycles remaining. The results of the scan were pretty good, but they wanted to make sure they got rid of all the cancer. 

Treatment got progressively worse, and I put on weight despite the fact that my mouth was so swollen, and I felt nausea a lot of the time. After my last treatment I got sepsis and spent three days in hospital.

I struggle with my mental health, and this experience had really taken its toll on me. But it was when treatment finished that I really hit a wall. I realised that I needed help and found it at Cancer Support Scotland, my local Maggie’s Centre and also through my local GP who arranged counselling with CBT (cognitive behavioural therapy). I also gained support from a hair and beauty charity who gave me a grant which was enormously helpful. 

My experience of lymphoma has had both positives and negatives. I am far more aware of things in life, and it has made me slow down and focus on making life as positive as it can be. I am back working, albeit only one day a week at the moment, but I have been fortunate to have worked for a boss who has allowed me to take the time I need. 

At the moment I feel like an old person as I am struggling with fatigue and general bone pain and have sciatica. But there is too much going on to dwell on these things as I have my two sons to care for half the time, so I have to power through. My ex-partner and I are navigating our way through a complicated situation, made even more difficult because of my lymphoma. But we get on well and are quite good friends and I have lots of plans for the future both for home life and work.