November 2021: It all started with deteriorating acid reflux problems and associated pain and discomfort, with some mild swallowing issues. My husband (M), aged 63, no longer enjoyed pizzas or door-step sandwiches. He was getting a bit fussy and edgy around some foods. The lanzoprazole didn't appear to be working any more. An endoscopy was recommended by the GP, but the preparatory blood test came back with a dangerously high red cell blood count, so the appointment was accelerated. I accompanied M to the appointment in case he had to be sedated and I waited a fair time out in the corridor (covid rules). When I was ushered in to a small room afterwards I thought it was very decent of them let me sit in there while they fetched my husband. When the lead technician and nurse followed him in, I was surprised that they might be giving us the results so quickly. Then it dawned on me: something serious was amiss. They informed us they had found a 'blockage' - a tumour. 'Almost certainly cancer'. More tests and biopsy results would now have to follow to confirm. Surgery might be an option. That was the first shock wave. We drove home in a state of disbelief.
A CT scan followed speedily (we were given a cancellation appt in less than a week) but as M was not suffering any significant symptoms, we remained optimistic that the tumour could be dealt with and after a bit of disruption, life would return to normal. But we were wrong.
3 December 2021: We were booked in to see the consultant for the CT scan and biopsy results. He didn't mince his words. M had a 6 cm cancerous tumour (adenocarcinoma) and it had spread to several lymph nodes, with evidence of further spread to the lung ( 2 spots) and the liver (one lesion). The blender, he said 'is about to become your friend'. When M asked 'How long have I got?', I thought he might say something shocking like 'possibly 5 years' but instead, he replied 'we're probably talking months, rather than years'. The bottom fell out of our world... Then he said that M's life expectancy and success of any chemotherapy treatment would be dependent on 3 things: nutrition, exercise and a positive mindset. We left the room with our heads spinning but we already knew that it was going to be down to us to make the best fist of this as we possibly could, even in such dire circumstances.
23 December 2021: Our first meeting with our oncologist. By then we had done our research and we arrived with armfuls of papers about cancer trials, immunotherapy success stories etc. We were certainly not prepared for M to be 'written off' or 'fobbed off' at this stage. M looked and felt far too well and this 'palliative chemotherapy' we had been promised couldn't possibly be the only option, surely? Surprisingly the oncologist didn't need any persuasion to look into immunotherapy options for us and he said he would wait for the analysis of the tumour to come through, hopefully indicating a PDL-1 value greater than 10, which would mean M would be eligible. We felt buoyed up. We would be able to face Christmas after all with some optimism for us and all the family. Happy New Year!
January 2022: No news re the immunotherapy was forthcoming. We made calls to the dedicated nurse, the oncologist's secretary, the oncology dept - all said they would check and get back to us. The 1st chemo cycle was not due to start until 21st Jan, which seemed a long wait. We started to get anxious when M began to get real swallowing problems,starting with a marmite sandwich that went down half-way and then came straight back up again. We asked for the chemo to start sooner, but due to staff shortages (Covid), the oncology dept at our local hospital had closed and we were transferred further afield to Wolverhampton. No earlier appointments were available.
21 Jan 2022: Cycle 1. It turned out that immunotherapy was not an option, as M's PDL-1 count was only 5. So standard chemo it was. A combination of Oxalyplatin and Oral Capeticabine. We were told it is one of the strongest, most aggressive of treatments. The list of side-effects longer than your arm was read out to us by an oncology nurse a couple of days beforehand and then we were off. The Battle had begun.
By this time, we were in full defensive mode and determined to outwit the cancer and beat down any side-effects of the treatment. We tackled each and every side-effect pro-actively and looked for solutions to every problem. The Raynauds Disease website came up trumps with silver-thread gloves and a Hotrox handwarmer to help with the discomfort of peripheral neuropathy. We bought a motor-cycle neckerchief to cover M's nose and mouth when outide in the cold air. I bought super-juices, green immunity powders and made fresh veggie soups. I taught music lessons online to protect M from viruses, especially Covid. We were determined to beat this thing, even against the odds.
I read that 'It takes a village to beat cancer', so I enlisted the village and friends and family to join me in a 100-day challenge to send out positive vibes to M for his 1st 100 days of treatment (taking us to the half-way scan). My challenge was to walk 'A million steps in 100 days' and every step I took, I mentally stamped on cancer cells. In the end, over 25 people joined me with this or their own chosen challenges. Because, I said, at the end of the day, whatever the outcome, 'Cancer can not and WILL not WIN!'
