Tomorrow (Friday) Lisa and myself will board the 7.14am train from Lichfield to London for an appointment at the Royal Marsden hospital about potential clinical trials.
This follows a trip I made to The Christie hospital in Manchester on Tuesday to sign up for possible trials there. So, as you can see, since my last post almost a month ago things have moved on a bit.
Or have they? In that period, the possibility of these trials has meant that, other than my monthly bone-strengthening injection, I've not had any treatment. It's felt at times like being in no-man's land after 12 or so months of a structured chemotherapy regime. Over six weeks since my last chemo infusion, and with any suitable trial unlikely to start for at least a month or two, we're in an in-between phase.
There are benefits to this. I've felt a return of energy which means my running has picked up again. I managed almost 14 miles (across three runs) last week which is the most I've covered in a week all year. It was great to recently do our local Chasewater park run with my friend Adrian, plus Dan (who disappeared into the distance and set his own PB), pictured below.
Unexpectedly, for the last three Tuesday evenings I've also joined Lisa, Rosie and Nick for a new weekly community rounders match at our local leisure centre. Pondering why I have enjoyed this so much, it's probably due to the fact that I've engaged in some sort of regular competitive sport for almost my entire life. Some of my oldest happy memories involve running in the annual school sports day at my first school, less than a mile from our current home. Fast forward 30 or so years and I was still battling it out in the dads' race at our kids' schools (see me winning the beanbag-on-the-head race below - obviously one of my proudest moments!).
I know sport doesn't tick everyone's boxes. But, whether it's five-a-side football or sprinting around four posts after smacking a white ball in the air on Tuesday, it's always been a great personal outlet. I appreciate this more than ever at the moment (especially as we've won our last three rounders matches ;)). It's a place where, for an hour or two, I can leave my cancer on the sidelines.
Despite my renewed energy, the enforced treatment break - which is necessary so that I start any trial as physically rested and chemo-clear as possible - has been a bit disorientating. As I mentioned last time, there is a risk that my cancer could 'progress' (i.e. grow and/or spread) in this waiting phase, even though, paradoxically, not having chemo means I feel more healthy than I have since before my diagnosis. My neuropathy (tingling numbness) continues in my hands and feet but, for the first time, feels like it may be starting to ease slightly.
This time of waiting has also on a few occasions felt like being in, what religious people call, a 'liminal' or 'thin' space, where it seems that this world and the spiritual realm intersect. The sound of the wind blowing through the trees on the nearby playing fields stopped me in my steps the other day. It felt like it was beckoning me gently to another, unseen, place. The realization that death - not as an ending but as a doorway to something more - is closer than ever rings through moments like this.
In conversations with Lisa, I'm also continuing, with varying degrees of success, to face the lack of an 'imagined' or expected future in this world. This is largely about mourning what probably won't be, because of my condition. I sense this when I see white-haired grandparents walking toddlers down our street, or with the awareness that each holiday, summer, Christmas or other celebration could be 'the last one'.
I love this quote (which I've seen attributed to both Anna Halprin and Richard Rohr): "Ageing is enlightenment at gunpoint."
My years of growing into the maturity and wisdom that only come with old age have been concertinaed (yes, that is a real word - I just checked!) into whatever time I have left. This feels weirdly pressured and impossible to comprehend. I guess I need to let this be what it is, but also focus on the wonderful life we've had so far as a family (as we approach our 28th wedding anniversary this weekend). And be thankful for the ways this life together has grown and borne fruit despite, or because of, this cancer. I appreciate the ongoing little milestones - like going to vote together with three kids for the first time (pictured below) more than ever.
Meanwhile, I hope tomorrow's London sojourn is a bit less chaotic than Tuesday's Manchester trip. I'll spare you the full details, but the journey there involved a late train connection which meant me missing a bus, followed by a taxi ride which was interrupted by a police stop.... and me then trying to find my way around The Christie's massive oncology department.
The hour-long appointment itself was fairly straightforward. I was there to give consent to, and blood samples for, my involvement in the TARGET National study which seeks to match patients to a clinical trial by examining DNA cells, found in the blood, which are damaged by cancer. If a specific match isn't found (there is only a 10-20% chance of a match), then I will be considered for more general trials for rectal cancer patients, as I think will also be the case at the Royal Marsden.
Of course, it may be that I am not matched to any type of trial, in which case further rounds of chemo at Burton will hopefully remain on the table. I'll touch base with the oncology team at Burton about this next week. Although there are risks, I feel I owe it to myself and those I love to explore the trial options, for now at least. There are no guarantees but I do sense at least some hope and possibility in this exploration.
I've finally finished reading the diaries and letters of Etty Hillesum, a Dutch Jew who died at the hands of the Nazis in Auschwitz in 1943, aged 29. Her writings portray her daily routines and relationships in all their mundanity and colour, with a zest for life, wicked humour and a refusal to cave into despair. She also drops in simple but profound reflections like the one below, which has sat with me all week:
"Ultimately, we have just one moral duty: to reclaim large areas of peace in ourselves, more and more peace, and to reflect it towards others. And the more peace there is in us, the more peace there will also be in our troubled world." (29 September, 1942).
(From An Interrupted Life: The Diaries And Letters of Etty Hillesum, 1941–1943, Persephone Books 2020).