Rachel

I noticed a rash on my arms which came and went. I went to the doctor who said it looked like eczema, but I had never had eczema this way, over such a large area of skin, not localised, and never on my arms like this. I didn’t feel that was the answer.  

In spring 2022 the rash came back with a vengeance. It was the same rash, but much more aggressive. It started with my legs, then arms and then spread all over my body. The itching was awful, keeping me up at night. I tried everything to keep myself cool, as any warmth set the itching off even more. 

I was living like this for months and was feeling miserable. My doctor was still talking about eczema, but I asked if I could be referred to dermatology. The dermatology team took a biopsy from the rash on my leg after they had started me on a steroid cream. This improved things and they too were saying it was eczema. It still didn’t feel right to me; we know ourselves and know when something is wrong, and this just didn’t seem to be an answer to the difficulties I was experiencing.

I then noticed a lump that had developed on my leg so went back to my doctors, although by now I felt like I was becoming a nuisance. He said that the lump was Erythema Nodosum (a condition that causes red, painful patches of skin) and that I could have TB so arranged for a chest X-ray. I thought this was going to be a waste of time as my chest was fine, but I was so uncomfortable and miserable I decided to try anything. I really expected nothing to come back.

Following the chest X-ray I was sent for a CT scan as the results showed I had enlarged lymph nodes in my chest and neck. A biopsy was then taken from the lymphoma node. From this biopsy, I was diagnosed with Hodgkin lymphoma stage 3, but after a full body PET scan I was diagnosed as stage 4, and I was told the lymphoma was hovering on the edge of my lungs. My consultant said I had 6 months left to live.

It wasn’t until I had actually entered remission and had been declared as cancer free with a complete response that I then remembered I had noticed a moveable painless lymph node in my jaw in the years leading up to the diagnosis. I didn’t think it was anything to be concerned about at the time. I checked this out with my haematology consultant, and he agreed that it is quite possible that this was a symptom of the cancer. He said that these are usually found below the jaw, and although it’s rare, enlarged lymph nodes have been known and found to be in the jaw itself. 

I was weirdly pleased to be right, as well as thinking that now there was a chance that things would improve. But once the high had gone, the reality set in. 

Rachel

After struggling with symptoms for so long, including dizziness, nose bleeds , fatigue and unexplained weight loss, and being sure that something was seriously wrong from the rash, my first thought was ‘I knew it!’ I was weirdly pleased to be right, as well as thinking that now there was a chance that things would improve. But once the high had gone, the reality of facing chemotherapy and losing my hair suddenly set in. 

I was to have six months of ABVD chemotherapy, which I found really difficult. I did not get hospitalised, but I felt terrible and dreaded the next round of treatment. I was also struggling with side effects of treatment. 

I knew it was likely my hair would fall out, so I avoided washing it too much and put it up in a neat bun to avoid brushing it. I ended up needing to have the bun cut out because my hair got into such a tangle. I didn’t like the way I looked with no hair, and lost my eyebrows, eyelashes and pubic hair. I decided I would wear a wig to feel more me. Very shockingly, my mother-in-law was killed in a car accident at this time, and suddenly all this didn’t matter. The wig, the make-up, all was discarded and I just resorted to a beany hat to keep my head warm.

My son was just seven at the time, and the loss of his granny and me having to undergo treatment had a huge impact on him. 

At the end of treatment I was told I had had a complete metabolic response and had gone into remission. Everyone around me was thrilled with the news, but I just felt numb. I felt nothing at all. If anything, I felt guilty I did not feel happy about the news. 

I was struggling with side effects. I had really dry eyes as a result of chemotherapy and gynaecological  problems, and was struggling with fatigue. But I was determined to bounce back. I was out roller skating and fell over and broke my wrist. I have a feeling it was because of the fatigue that I fell, but the plan to go out and enjoy life again had blown up in my face. I am having physio to help with my wrist, but it isn’t right yet. 

I have also struggled a lot mentally. I think it is going to be a long process for me, but exercise is proving really useful. When I exercise I feel I think more clearly and my brain works better, so I work out three times a week. I’m currently on the waiting list to be assessed for ADHD and also ASD through the NHS. I listened to a podcast recently on neurodiversity and cancer, which said that studies have found that neuro diverse people struggle a lot more with the side effects of cancer treatment, due to sensory issues and more. 

There is no right or wrong way to go through treatment or cope afterwards. Whatever works for you is right at the time. But I would say, please trust in your body, as instinctively I knew that something serious was wrong.