Andrew

In 1992, at the age of 21, I noticed lumps in my throat and the glands on both sides of my neck had come up. I shrugged it off and thought it would go away, but it got worse and I was struggling to swallow.

It was glandular fever so I just carried on as normal the best I could. But I started to develop other symptoms. I started to feel itchy, and at times it was so bad I was ripping the skin off my hands and feet. I was also feeling really tired, which was difficult as I was working with stock which was extremely hard work.

I then noticed a hard lump in my chin that was about the size of a piece of coal. This really frightened me and I mentioned it to my friends. Some just took the mickey out of my concerns, but others were concerned. I was terrified of going to the doctors and kept putting it off, but there were just too many signs that something was wrong.

After 4 weeks I went to the doctor who examined me. I said to him: ‘It isn’t cancer is it?’ as that was my greatest fear, to which he answered ‘ No, you're far too young for cancer’. He arranged for me to go to the hospital to have a biopsy taken of the lump. A couple of weeks later I went back and was told I had Hodgkin lymphoma. The nurse tried to soften the blow by saying I had ‘the good cancer’, but nothing felt good about it to me. It was beyond belief, and I really thought I was looking at the end of my life.

I expected to be treated with chemotherapy, so was surprised to be told they were going to treat me with radiotherapy alone. I believe it was called mantle radiotherapy and it targeted the whole of my upper body including my neck, chest and armpits.

I would have the radiotherapy every week day for four weeks. At the end of treatment they decided to do another week, but just targeting the right-hand side where the Hodgkin lymphoma was found.

I knew I was going to be ill, but hadn’t anticipated it being as tough as it was. Much of my skin went bright red and bled in places. It then went black where the skin was dying off. In addition I lost my voice due to the effect on my saliva glands and I lost my sense of taste; I was actually drooling at times. Over the next months I lost a colossal amount of weight and the whole thing took its toll. I asked if I could stay in the hospital for the treatment, but I was transported to and from the hospital each day. I struggled to get up and down the stairs to bed and have been told I had visitors, but don’t recall them. Day and night just seemed to merge, followed by a journey to the hospital. Even now I recall just how difficult it all was.

I asked what would happen if the radiotherapy didn’t work. They explained that I had received my lifetime allowance of radiotherapy, but they could use chemotherapy if it hadn’t sorted out the Hodgkin lymphoma. Looking back, it felt like they were trying to crack a walnut with an atomic bomb!

Treatment finished in 1992 and I was told the radiotherapy had got rid of the cancer. I could now get on with my life, albeit I had follow-up for 15 years. And that’s what I’ve done – I’ve had a really good life.

I had been a smoker in my 20’s and thought that I should stop smoking after the diagnosis. I started keeping fit and became a bit obsessed with it for quite a time.

In my forties, I started to have pain in my back, and specifically in my spine. Doctors thought it was arthritis. I thought it could be due to pulmonary fibrosis as this is common in people who have had mantle radiotherapy.

On my 54th birthday I woke up having a stroke. I had incredible pain in the side of my face, but my mouth and face hadn’t dropped so I wasn’t sure. I was also able to walk, talk and all the other signs of stroke. I went to the hospital where they carried out an MRI, which confirmed I had had a stroke.

It was explained to me that the radiotherapy had caused vessels in my heart to narrow. The treatment had been thirty years beforehand and I hadn’t made the link at all. I really thought I was scot-free from the Hodgkin lymphoma and this was something entirely new.

Talking to a cardiologist, I was told I had aortic stenosis which is a heart condition where the aortic valve narrows, restricting blood flow from the heart’s main pumping chamber to the aorta. I am now facing open heart surgery, which is a frightening concept, and feels just as frightening as the diagnosis of Hodgkin lymphoma over 30 years ago.

Looking back, would I have made any different choices? No. I either had the treatment at the time or I would have died many years ago. In fact, I have lived longer since Hodgkin lymphoma than I had before it. I am very grateful for the full life I have had over these years but know I am facing another major hurdle.

I wanted to share my story so that others who had treatment many years ago will feel less alone with late effects of treatment. While searching, I found very little shared by people.

It’s just good news that modern treatments for lymphoma are so much better with fewer late effects.