I had very few symptoms leading up to my diagnosis of lymphoma in April 2020. In retrospect, I was a lot more tired than usual for the six months or so beforehand but put that down to my job as a GP and the general ‘busyness’ of everyday life.
In the February of that year, I felt a sharp pain in my left side which was strong enough to wake me from my sleep. It went away after a couple of hours, but this happened three nights in a row. I thought it best to see my GP, as I thought I might have had a kidney stone. I was sent for an X- ray, which came back as normal, but a week later the pain returned and kept me up all night.
Suspecting it was a kidney stone, my GP sent me to the emergency urology team, where they performed blood tests and a CT scan. My blood test results showed poor kidney function, and the scan showed possible kidney fibrosis that needed further investigation. An initial biopsy taken from the area was inconclusive, although I was told by my medical team that they suspected lymphoma. Meanwhile, I had a stent and nephrostomy bag fitted to prevent further kidney failure as regular blood tests were showing that my kidney function was getting worse.
Around three weeks later, a further biopsy confirmed that I had follicular lymphoma and that I would need to start treatment with chemotherapy. As someone who has always lived a healthy lifestyle it was quite a shock.
I started the first of six sessions of R-CHOP chemotherapy in May 2020. After my third session, the nephostromy bag was removed, which resulted in a stay in hospital because of neutropenic sepsis. Once I had recovered, I continued with my treatment and finished chemotherapy in August 2020. The worst part of all of this was that my treatment took place during the COVID-19 lockdown, so I had to go to every chemotherapy session on my own. My wife, Tracey, essentially became a carer for me as she helped me to change the nephrostomy bag, among many other things. Thankfully, I received the news that I was in remission in October 2020 and I was back at work two weeks later.
I started receiving rituximab as a maintenance treatment the following year in June 2021, but I decided to stop six months later in order to build up my immunity to COVID-19. I had read about emerging evidence that ongoing or recent rituximab lowers the effectiveness of the COVID-19 vaccination, so took the decision to stop the maintenance treatment and basically lived another year in lockdown by avoiding crowded places and working from home.
In January 2023 a COVID-19 antibody test showed that I had full immunity to the virus and since then I have been doing a lot of living! It’s been wonderful doing normal things like going to concerts, restaurants, pubs and the cinema. Tracey and I also took part in Lymphoma Action’s Bridges of London walk earlier this year, which was fantastic! I now make the best of my time and enjoy living life.
As I am sure is the case with most people who have been through a cancer diagnosis, things crop up and I worry if it has come back. I never used to go to the doctor, but now I always get checked out if there is something I am not happy with, like a persistent cough or strange aches and pains. Although I am reasonably well, I have been left with just one functioning kidney as I have stage three kidney disease following the removal of the stent in the kidney affected by the lymphoma. I was given the option to have another stent put in, but this would have been very painful so I decided against it. The risk with this was that the kidney will eventually die, which is probably what is now happening, and may be why I still get very tired – particularly by the afternoon.
I am still working, but very much on a part time basis now and I have decided to bring my retirement forward by a few years, and take a year out with Tracey. We have recently bought a motorhome so I am looking forward to packing up and travelling to wherever we fancy with our beloved dog.
Being diagnosed with lymphoma was something of a shock, but I was determined to meet it head-on. I feel I live in the shadow of the diagnosis, but that does not affect my enjoyment of life.
Ahilan shared his story with us as part of our Let’s talk lymphoma awareness campaign which ran throughout Blood Cancer Awareness Month in September.