My life has been coloured by 10 years of ill health. I have myotonic dystrophy (a genetic condition that causes progressive muscle weakness) and polycystic kidney disease (a genetic disorder resulting in the growth of multiple cysts within the kidney). I also have diabetes.

In 2013 I experienced several symptoms which were new. I had a number of blood tests, which all seemed fine. While people around me said that this was good news, I just found it difficult. If you know something is wrong, just because they haven’t found anything doesn’t mean that nothing is wrong. It was very frustrating. More blood tests revealed a raised PSA (prostate-specific antigen), which eventually led to a biopsy and then a diagnosis of prostate cancer.

In November 2015 I had a cryotherapy procedure (using extreme cold to freeze and destroy abnormal or diseased tissue). Unfortunately this went wrong, resulting in a hole frozen in my bladder. As a result I developed sepsis and was really ill for two years.

In 2018 I felt an improvement from the cryotherapy complications. Although my health wasn’t 100% it certainly seemed to be improving. During this time of recovery my PSA was routinely monitored until in 2020 I was asked to have another prostate biopsy where it was confirmed I had a reoccurrence of prostate cancer (although I’m not sure it ever went away). From this time the prostate cancer was the focus of attention, however some CT scans I had whilst monitoring its progression revealed enlarged lymph nodes in my armpits. My prostate cancer medical team thought it was unusual.

The lymph nodes in my armpit had grown to such an extent that they decided to do a biopsy of them in October 2024. The biopsy revealed I have either chronic lymphocytic leukaemia or CLL for short or small lymphocytic lymphoma or SLL. CLL and SLL are the same disease: CLL is diagnosed if the cancer is found in the blood, and SLL is diagnosed if it is found in the lymphatic system. In my case it was found in the blood and lymph so I have CLL/SLL.

“I have probably had SLL/CLL since 2013 without a diagnosis. The difficulty with having several health conditions is that you aren’t sure what is causing your problems.

One thing for certain is that a number of my conditions cause fatigue, so feeling exhausted is not unusual for me. My predominant thought about the diagnosis of CLL when it finally came, was one of relief. I would like not to have cancer, and I’d love to be 100% well, but I just wanted to know what was happening to me, and couldn’t rest until I did.

When I saw the lymphoma team in November 2024 they said there was a 5% chance that I had an aggressive variant but they wouldn’t know whether I had this until they’d completed genetic tests. Many people with a CLL diagnosis never require treatment (and they die with the disease rather than of it).

Following the diagnosis in November 2024 I noticed the symptoms worsening and the lump growing. When I saw the team again in March 2025 they confirmed I had an aggressive variant and wanted me to start treatment straighaway. It is a year long programme of treatment comprising oral venetoclax and infusions of obinutuzumab, along with lots of blood tests.

They agreed to delay treatment so that my wife and I could go for a holiday. We have always enjoyed travel, and I know things have been very difficult for my lovely wife Stella.

I do not feel the same every day, and one day I can head off on my motorbike and the next I can barely get off a chair. We have two sons and five grandchildren who we love very much, but I can only manage a few hours with them before I need a rest, which is challenging.