To mark the week of World Cancer Day 2021 we are sharing the story of 56-year-old father of two, Andy Ayres from Southampton who was diagnosed with Non-Hodgkin Lymphoma in the summer of 2019. Andy agreed to take part in a clinical trial and is now, thankfully, in remission and his story highlights how vital clinical trial networks like the Cure Leukaemia funded Trials Acceleration Programme (TAP) are to ensure blood cancer patients across the UK have access to potentially life-saving treatments through clinical trials.
After returning from a long weekend holiday in Venice with very good friends of ours I returned to work as normal late in July 2019. For a couple of weeks, on and off, I had a feeling of trapped wind in my upper stomach along with a slight feeling of sickness. It was on Saturday 10th August when we had many friends and relatives visiting for food and drinks to both open my new outbuilding / mancave named the ‘Doghouse’ to celebrate my 30th wedding anniversary (12th August) with my wife Julia.
On the Saturday, I started to feel the same symptoms again. As the day progressed into the evening, I felt the need to rest and at roughly 8.30pm I gracefully retired from the evening for a while to lay on my bed. Later in the evening at approximately 10pm my dear daughter Stephanie came to check on me and offered to drive me to the hospital, to which my reply was I would go tomorrow if I did not feel any better.
Stephanie politely told me to get in the car now to go to University Hospital Southampton, as she knows I would not answer in this manner. We duly set off to hospital and I had a blood test in the early hours the following day, and duly waited for the results whilst suggesting that Stephanie returned home whilst I was waiting for results. this she refused and waited patiently with me. At roughly 6.30am I was called to my Doctor who subsequently examined me and could not locate anything sinister, and to be fair you would not from a standard physical examination.
I was offered to either progress the situation further or be given some pills to help with the feeling of sickness. I suggested that I would take the pill option to avoid further time and trouble however my daughter Stephanie thankfully interjected and insisted on the option of progressing the matter further, which was duly actioned.
The Doctor then made a couple of telephone calls and I was given a very swift appointment to see an Oncologist at on Tuesday 13th August. This took place and subsequently and although my symptoms appeared a little vague, a CT scan was arranged for the very next day, and two days later my doctor described what it had found. He told me that a nodule mass had been discovered in the Mesentery area where the small upper intestine meets the larger lower intestine, and further investigation via camera would be required to confirm the situation.
'My simple view on clinical trials is that nothing progresses and moves forward without them and I would not have been able to have had the amazing treatment I have been fortunate to have without others undertaking trials before me.'
After this examination and a few weeks later I received a call from my doctor advising me of my diagnosis which was high-grade Non-Hodgkin Lymphoma, and that he had referred me to a senior clinician at University Hospital Southampton.
For myself, my family and friends this was obviously very shocking and devastating news and soon the day came for me, my wife Julia, and my son Dean to visit the hospital to meet the Professor. We discussed the matter in great depth whilst also agreeing to take part in a second phase drug trial, via the Biomedical Research Centre.
Andy having his 1st chemotherapy treatment in October 2019
This soon began with a set of six chemotherapy sessions every three weeks subject to satisfactory blood test results, along with participating in the drug trial. Over the course of the following seven months I had chemotherapy deferred a few times due to unsatisfactory blood test results, and sometimes found myself visiting the hospital three or four times a week to undergo this treatment. For a Company Director who loves his work this was very challenging and stressful but I knew it was vital that we found a way to make it work.
Meeting Paul Gascoigne at an event with my son Dean, the following day I noticed my hair was falling out
As if my diagnosis wasn’t enough to deal with, midway through my treatment my family was dealt another blow. My daughter’s long-term boyfriend, Jason, was diagnosed with a testicular cancer at the age of 29 and duly had an operation just after Christmas 2019, with chemotherapy sessions that followed during March 2020.
Jason (pictured left) mentioned that when he first saw a doctor regarding a small lump that he could feel, the doctor was unsure that he could feel anything. Having had first-hand experience of my diagnosis, he insisted that these symptoms were investigated in more detail. My experience with blood cancer has been so hard for us all but this is something positive that has come out of the situation.
After having to cancel all our various holiday plans due to my diagnosis, I was given the all-clear for a flight to Turkey, flying out on Friday 13th March 2020 for what should have been 14 days. COVID-19 very swiftly put paid to this as our return flight was cancelled within a few days of our arrival, and fortunately we were able to secure seats on the last emergency flight home on the Friday before Turkey closed its airspace at midnight on the very same day.
Needless to say, it has been a very testing time for all concerned made somewhat more difficult due to COVID-19. I am currently in remission and feeling well, and the only thing holding me back at this moment is this virus. I consider myself very fortunate, not only to have been diagnosed early, but also to have had amazing treatment given by amazing selfless people. I think we probably all have taken our NHS for granted, and I for one did not realise how amazing the service is until you really do need it and use it.
My family at Christmas in 2019 - I could not have got through treatment without them
My simple view on clinical trials is that nothing progresses and moves forward without them and I would not have been able to have had the amazing treatment I have been fortunate to have without others undertaking trials before me.
Andy was treated at University Hospital Southampton, one of the 12 blood cancer centres which receive funding from Cure Leukaemia to form the national Trials Acceleration Programme (TAP). Cure Leukaemia sustained a fundraising shortfall of £1,500,000 in 2020 due to COVID-19 and it is vital that we continue to raise enough funds to ensure patients across the UK, like Andy, have access to the latest treatments for blood cancers.
To make a donation to support our Southampton TAP Centre click HERE
To find out how you can help patients like Andy email Lifesavers@cureleukaemia.co.uk and one of the team will get back to you.
How funds raised for Cure Leukaemia help save lives