Neil

A diagnosis of grey zone lymphoma, which in Neil's case meant that his lymphoma had features of diffuse large B-cell lymphoma and classical Hodgkin lymphoma.

Neil sailing

In 2016 I was 51 and working in the pharmaceutical industry. I am a chemist by profession with knowledge of drugs, the way they are tested and manufactured. So was this an advantage in my case? Well, it was a bit more complicated than that.

At the beginning of 2016 I had a minor cough. It wasn’t really troubling me and I was still able to run 4 miles twice a week and cycle. By April my cough was getting worse, and I noticed that I needed to cough at the end of almost every sentence.

I went to see my GP, and felt that I might be troubled by stomach acid. I was prescribed some antacid and he said to make another appointment if it didn’t work. After no improvement I did as he said and went back, something I am so glad I did! He arranged for me to have an X-ray as a precaution.

The X-ray showed a 5cm mass above my right lung, which was likely to be cancer. In truth I was not surprised as the antacid had done nothing and I realised that somehow I didn’t feel generally well and was fatigued. Suddenly I became an impatient person. I wanted an accurate diagnosis as soon as possible; I wanted to start treatment as soon as possible. I kept asking what I could do to speed things up.

 
Suddenly I became an impatient person. I wanted an accurate diagnosis as soon as possible; I wanted to start treatment as soon as possible.
Neil

By the end of the first week, I was having a CT-guided needle lung biopsy. Everything seemed to be moving along. Then everything went quiet and there was the waiting, which anyone who has had a lymphoma diagnosis will understand.  

I had to wait two weeks before seeing a consultant haematologist. He explained that I had lymphoma, but that it was complicated. My case had been discussed at MDT and while most of the cells coming back from the biopsy were diffuse large B-cell-like, in the middle there were also Reed-Sternberg like cells that are present in Hodgkin lymphoma.

My diagnosis was grey zone lymphoma, stage 2E. I had features of diffuse large B-cell lymphoma and classical Hodgkin lymphoma.

My doctor explained my treatment would be six cycles of R-CHOP chemotherapy, probably followed by radiotherapy.

 
It helped me to know that nothing I had done caused the lymphoma.
Neil

I decided to throw myself into exercise. I wanted to be as fit as I could to manage the treatment, nd as robust as possible to give myself the best chance. I also tried to mentally prepare myself for the biggest challenge of my life.

I had started out feeling shocked and angry. I had kept myself fit and had never smoked. But understanding that nothing I had done had caused this helped.  

My daughters were 18 and 19 at the time so I decided to be honest with them and tell them everything. They coped well, although I noticed my younger daughter was quieter. My wife said: ‘I will be with you every step of the way.’ I couldn’t have asked for anything more, and she was there for me through everything.

I felt nervous about my first chemotherapy but the treatment wasn’t nearly as bad as I feared. I had imagined it was going to be an awful but there were no dramas and it was not painful. I felt great relief that treatment had started and I imagined the various mechanisms by which the different drugs and my immune system would now be attacking the cancer cells.

I started to recognise the pattern of how I would feel after treatment. For the first five days the steroid prednisolone helped, but by days 6-7 the effects of that drug had worn off and I felt really rubbish and tired.

 
As things were looking up, I knew the next treatment wasn't far off.
Neil

On day 10 my neutrophil count was at its lowest, so I had to be careful because of the risk of infection. I was almost paranoid about getting an infection because I really didn’t want any interruption to my treatment.

By the third week, things were looking up, but I knew that meant the next treatment wasn’t far off.

I didn’t struggle too much with side effects. I lost my hair after the first round of chemotherapy, and had some mouth ulcers and a couple of eye infections. By the third round, I was still managing to ride my bike and go for walks, but after the third or fourth treatment, I noticed my muscles were feeling weaker and I felt much more tired.  

It's strange how cancer puts you on high alert. Suddenly I was worrying about things being said or minor twinges. My throat felt bad on one occasion and I started to think it was spreading, and that the treatment wasn’t working. It was only a mouth ulcer!

Ten days after the fourth cycle of chemotherapy I was given a CT scan, so that the team could decide whether to continue with the treatment plan or whether they would need to consider changing it if it wasn’t working. This was the first measurement and an important moment. Because I had a lump behind my sternum bone, I couldn’t see or feel it, so I couldn’t judge whether the lump was going down. But after the first round of chemotherapy, my cough vanished, which I took as a good sign.

The scan showed I was responding well to treatment; the tumour had reduced by more than 50% and had not spread. The plan was therefore to carry on with the chemotherapy, followed by radiotherapy.

Because the tumour had reduced so much and was now relatively small, they could target it with radiotherapy, with a total of 30 grays planned. At first I couldn’t tell that anything was happening, but by the eighth or ninth session I noticed a few things. I felt very tired and my throat was getting tight. I was also starting to get cramps in my calves, which was really unpleasant. The radiotherapy was taking its toll and I was relieved when it finished.

 
The radiotherapy was taking its toll and I was relieved when it finished.
Neil

By mid-March I started to focus on getting fitter again. I knew I needed to build up my muscles, especially in my legs, but didn’t want to overdo it. I was shocked at how much slower I was than I had been before treatment.

At the end of April 2017, I had a 3 month post-treatment scan and the results were excellent, I was in complete remission.

I think my perspective in life has changed. I used to take things very much more seriously, but a cancer diagnosis puts things into perspective. I feel rather humble and very fortunate. I went back to thank my GP for referring me for a chest X-ray and he told me I had been a good patient because I had followed his advice and had come back promptly when the antacid didn’t work. It really can pay to listen to your doctor!

Story posted on 1 November 2019