Following on from my intravenous Chemo, I now have my phone alarm set for 8am and 8pm to ensure I take the oral medication on the dot (or near enough) every day. Initially the pain of the peripheral neuropathy was significant, and affected my fingers, toes, nose and ears. Going out, even with a hat and gloves, meant that within a matter of minutes my extremities would be on fire, and that any walk, or visit outside could be no more than 30 minutes. Even walking across the kitchen floor in socks was a bit of an ordeal. But, I count myself lucky; this side effect has reduced significantly, and now it’s barely noticeable. The only other, that I’ve noticed, has been a change in taste. Chocolate and cheese (and I love cheese) taste bland; the only things that taste good now are very tart, or sweet foods, like lemon juice, honey and fruits.
I don’t suffer any pain. I’ve had some intermittent nausea, and I’ve lost about 2 stone in weight, maybe more (I haven’t weighed myself in years). I do know I’ve lost 4 inches off my waist and now take medium, rather than large in clothes size. The last time I lost this much weight was after my marriage breakdown in 2002. I look a lot fitter, but of course I’m not.
There was a wonderful event on the following Sunday evening. I have been the official photographer for Urban Strides Street Dance family for about 5 years; since Jacob became a member of the Junior Crew. I have been privileged to watch both the Junior and Senior crews practice and perform, and have documented the Hip Hop Don’t Stop classes held every holiday. It has been really magical, watching the students grow, in age, height and maturity, and their see talents realised with practice and mentoring. The visiting teachers, many from around the world, as well as from all over the country, have become friends. Two members of this family decided to hold a ‘Dance for David’ event in High Wycombe. They’d managed to get teachers and students to donate time or items to a raffle, and sell tickets to the event to raise money for our family’s Bucket List.
It was a noisy, vibrant and humbling affair with lots of music and dancing; with Hattie and I proving that, in no way, should we take part in any form of body movement again, since neither of us has rhythm. Thankfully most of the others dance really well, and it was a pleasure to watch.
The following Thursday I had my 4th CT scan. I had been warned to expect this would show further spread, since the immunotherapy would not take effect (if at all) for at least 4-6 weeks, and Chemo had only just begun.
During this time away from work I have been visited by many friends, and family, from all over the country, and have received many wonderful messages of love and support. I cannot express how much this has meant to me. Thanks to my friend Cathy, however, I got another, very special message from a very special friend. Film Director and Socialist hero, Mr Ken Loach, sent me a postcard…
Christmas was spent with family. Hattie, Jacob and I spent the morning opening our presents to each other, along with a glass of Bucks Fizz, then we went over to Wantage to join Abbie and Lee for the afternoon and evening. It was very special. They cooked a wonderful Christmas dinner, and we’d taken a vegan nut loaf which Hattie had made the day before. We talked and laughed whilst playing board games; he best of which was a new one called 221a Baker Street. It’s like an adult, more complicated Cluedo, with Sherlock Holmes having to visit various rooms to garner various clues to a crime. The idea being that at some point one player is able to say who did what to whom, with what weapon and why; having consumed a fair bit of alcohol, the girls had lost the plot early on, but no one got it completely correct, and it ended in anticlimax. It was a perfect Christmas Day…
Boxing day saw us travelling north to visit my parents and Sister Fi, and family. Sally, Steff. Dylan and Una arrived shortly after us, and we took the dogs out for a walk up to Tegg’s nose. It was very wintery, with snow still on the hilltops, and though it played havoc with my peripheries it was great to get out in the fresh air. An evening of food and warmth, more games and chatter blew away the discomfort.
Too soon it was all over and we were driving home because I had therapy the following morning…
At this point I have to admit that my mood dipped, just for a couple of days. The lead up to Christmas is always so long, then suddenly, it’s here and gone, all too quickly. I realised that this had been my last Christmas, and 2018 my last year. I’d wanted to savour it, I wanted to languish in the family, the chatter and the laughter. I wanted it to last longer, to mean more, to have been the best ever; it had been too fleeting. I am lucky enough not to have suffered depression since the age of 17 (the result of 3 years of bullying at school), but this knocked my normally positive outlook askant.
Equilibrium quickly re-established itself, and I realised that, of course, trying to attain some extra special, uber fantastic, supercalifragilistic experience is unachievable, unless you decide that every day and every experience is just that. It’s about what I discussed in my first blog, yet I’d temporarily forgotten; the extraordinary is in all the mundane, often repetitive and ordinary things we do, what we see, hear, taste and smell; the everyday interactions with friends and family. It’s about changing how we perceive these things. That’s all it took.
I do not want dates, especially Christmas and New Year to take on a different meaning. I do not want these to change to a time of loss, or sadness, but remain a time of joy, family, laughter, stupidity and board games.
I was informed at my next immunotherapy session that the CT had shown further spread in the Liver and abdomen, and that there was now spread to the lymph glands around my oesophagus, and though I had been expecting this, it still hit me hard. The next scan, on February 1st, will determine whether any of the treatment is, even temporarily, reducing the cancer, and if the prognosis has changed, positively, or negatively…
Since then I have managed to return to work for a short shift of 7.5h. Returning to an Emergency Department which has been at OPEL 4, the highest alert for the NHS, for 2 weeks. It made me realise just how much I missed this team of super humans, and the job I love. I was lucky, I was super-nummary. I arrived just as the pressure on the system was easing slightly, but we have become so used to the pressure that what was abnormal and unacceptable, becomes the norm. All non urgent elective surgery has been cancelled for a month to free acute beds, and staff are to be moved from theatre recovery and the elective surgical wards to open previously closed beds.
Health Minister Philip Dunne, in reply to the crisis in A&Es up and down the country, with patients having to sit on the floor, that ‘there are seats in most hospitals for patients to sit on’.
Jeremy Hunt refuses to move cabinet positions, and is rewarded with a wider brief as Secretary for Health and Social Care. This despite the worst NHS winter crisis ever, and in a move likely to speed up the dismantling and privatisation of the NHS.
As with the stages of grief, we are shocked, we deny, we get angry, we are defeated, and we accept… or not!
Fight for the NHS!