Inklings of death and life

As mentioned in an earlier post, Radio 4's Today programme is the perfect remedy for insomnia.

If I've been awake in the early hours due to my steroids, I can guarantee that flicking Today on at 6am will find me immediately dropping in and out of sleep for an hour or two. It can also leave me stirring just before it finishes at 9am with a slightly jumbled state of world affairs in my mind, as I dozily catch snippets of different news stories.

But sometimes a story will cause me to wake up and listen. The first time this week was on Tuesday morning when they interviewed a man who was diagnosed with Stage 4 pancreatic cancer. After repeated complaints of stomach pain to his GP surgery over several months he failed to get a quick-enough cancer referral. His story was familiar - him seeing numerous people at GP level, then getting a too-late diagnosis only after his cancer had spread, before entry to the hospital system where he was quickly started on chemotherapy, which is ongoing.

I woke again with a jump on Wednesday when Radio 4 carried a follow-up story which focused on the pressure GPs are under and how, in recent years, many appointments have been via phone or Zoom which can make it harder to accurately diagnose patients with potential cancer symptoms. GPs, and nurses in their clinics, are basically investigators who have to try and work out, often through gut feeling, when further tests are needed. But the UK is lagging behind other countries in diagnosing patients at Stage 1 or Stage 2 of cancer where the chances of beating the disease are much higher. This leads to preventable, early deaths for those whose cancer is incurable, or terminal, by the time they get a hospital referral.

I'm pretty certain my cancer began around the spring of 2021 when I started to feel regular discomfort in my bowels - particularly after eating. This was usually paired with testicular pain that I had experienced a few times following my vasectomy around 14 years ago, but more regularly in recent years. I'd had ultrasound scans, some time ago, which showed there were no testicular problems, other than those probably linked to internal scarring from the vasectomy.

During the lockdowns, my bowel discomfort continued, usually accompanied by ball pain. I reported this on numerous occasions to my GP's leading to my debut prostate exam. The doctors' focus was mostly on the testicular pain and I was often sent away with antibiotics or painkillers. One theory was that my symptoms could be stress-related due to the demands of work during Covid, which saw me being prescribed Amitryptiline to help me sleep and deal with the pain. There were jokey comments between Lisa and myself (we were both classed as key workers in lockdown) about my 'stress balls', with the pain seeming to get worse with any additional work pressure.

Several medical appointments, as was common during lockdown, were over the phone, including one on a Saturday with a nurse from a different part of the UK. As drugs seemed to help, I would usually ring asking for more antibiotics, without much discussion about the wider issues.

My inklings that something wasn't right did also lead to a urology referral in March 2021 for further examination. This was categorised as non-urgent meaning I had to wait nine months to see the urologist at our local hospital in Lichfield. When this finally happened in December 2021, I explained my erratic bowel patterns, pelvic pain and testicular pain. The urologist did give me a rectal examination which I imagine may've meant him bypassing, and not noticing, my primary tumour which could've already been growing at the time.

I recall the above in detail because, after my cancer diagnosis, the consultant surgeon at Burton hospital pulled up the urologist's notes on his computer and read them out to me over the phone. Recognising that things may've been missed, the consultant surgeon then offered to write to my GP to suggest a review of my case, to see if there were any "learning points". That was in April this year and I've heard nothing since.

I also began experiencing back pain in April 2022. This first appeared when I ran home from church one morning, sensing a sharp pain at the base of my spine which I exacerbated by tripping on a tree root. By the end of 2022, the pain had spread to my neck and I was doing daily yoga exercises to ease it.

At any of my appointments - especially when I saw the urologist - a bowel cancer screening kit involving a home stool sample could've been ordered. But it wasn't. It was only when I again followed my inklings (encouraged by Lisa to keep at it, when I felt I should maybe let it lie) and rolled up at the GP's for the second time in a few months, either side of last Christmas, complaining of my increasingly random and urgent need to go for a number two, that the kit was ordered. Just a few months before this, the doctors were looking at IBS (Irritable Bowel Syndrome) as the most likely cause.

Within six weeks of popping my (safely sealed!) stool sample for screening in the post box, I began chemotherapy for what turned out to be incurable Stage 4 cancer. This was just over two years after my initial bowel issues and 12 months after my back pain started, which may've signalled the spread of cancer from my bowel to my spine (the incurable part).

I have no desire at the moment to point the finger or apportion blame. I appreciate Covid made a joined-up, face-to-face, GP service harder to achieve. GPs, under immense time pressure and mounting caseloads, often depend on guess work and I understand why they maybe initially worried more about my testicular rather than bowel issues. After all, as the surprised consultant surgeon told me when he first saw me, I was not your usual bowel cancer candidate, with nine out of ten cases affecting people aged over 50.

While I've felt some anger about my pre-diagnosis journey, and the years it will almost definitely cost me (and the impact this will have on those I love), I've tried to sit, with varying degrees of success, in the flow of forgiveness. This is for my own sake as much as the doctors - I don't want my remaining years to be corroded by bitterness and 'what-ifs'. Ultimately, as the slogan on my favourite black t-shirt tells me, 'People Make Mistakes'.

I am also appreciative for the GP who followed his inklings and did finally order my stool screening test in March, and the then rapid referral for a colonoscopy that revealed my tumour. This GP apointment was the first time it was clearly highlighted that I had three of the signs of bowel cancer: a change in toilet habits, weight loss and blood in my stools (which were not down to piles as initially thought). Without that referral, however late, I may not be here today.

The moral of the story is to push for the bowel cancer screening test (also known as a FIT kit) if you have the slightest inkling that something isn't right or any of the tell-tale signs, whatever your age or sex.

I typed most of this blog on Wednesday but couldn't believe it yesterday morning when, after a fitful and cold night's sleep, I woke at 5.33am and switched on Radio 4's early News Briefing. The first words I heard were the headline:"A man saw eight different GPs before his cancer was spotted..."

So, I guess it's worth repeating that something is wrong with our creaking health system where this type of late diagnosis is happening too often, leading to thousands of lives lost early. I'm glad that Cancer Research and others have been able to shout about it this week and gain some traction in the news - even if the story did shake me from my slumber, not once or twice, but three times in as many days.

I wore my 'People Make Mistakes' t-shirt (from a design-range by a former homeless man) to chemo on Monday. The second fortnightly cycle with my new chemo mix, it was over earlier than ever with me pleasingly departing the hospital in time for lunch at home. After what felt like the easiest chemo ride I've had so far in my last cycle, the predicted side affects have been stronger this time around with pins-and-needles tingling in my fingers as I touch anything cold (thanks for defrosting the car for me Macy!), and a weird sensation in my throat when drinking chilly liquid. Still, I've not yet had any startling throat constrictions and the symptoms have eased as the week's gone on. I've also been more fatigued than on my last cycle - probably not helped by forgeting to take two lots of my steroids on Tuesday. But despite needing to take it a bit easier, I'm okay and have enjoyed a couple of lovely, winter-sun morning walks across the local fields (pictured above on Wednesday).

On Monday, the comfy chemo ward chair next to mine was empty for the second session in a row, as I found out that my usual partner-in-chat P has been pulled off his treatment to get ready for surgery. Although he is at Stage 4 like me, there's an opportunity to remove his cancer due to where it's spread. The chemo nurses kindly offered to pass my mobile number to P when he came into hospital that afternoon. We were texting back and forth within an hour or two. I really hope things go well for him in the coming weeks.

I've realised recently that I'm starting (only 'starting', I emphasise) to become more accepting of the reality of death. This isn't the same as a self-limiting cowering to, or surrender to, death. It's an acknowledgment that death is an inevitable part of life and that trying to hide from it - or deny its presence - won't make death go away but will, paradoxically, see it loom larger than it needs to. I reflected in my private Google docs diary on Monday that I sensed God is inviting me into life while at the same time preparing me for death - and that the two are somehow natural partners rather than enemies. This isn't meant to be maudlin but, instead, freeing - especially as we will all have to face it.

Two days later, I received a daily meditation email which featured extracts from the diaries of Dutch Jew Etty Hillesum (pictured above) who was murdered in Auschwitz aged 29. Just before her departure for internment, she wrote these remarkable words:

"By “coming to terms with life” I mean: the reality of death has become a definite part of my life; my life has, so to speak, been extended by death, by my looking death in the eye and accepting it, by accepting destruction as part of life and no longer wasting my energies on fear of death or the refusal to acknowledge its inevitability. It sounds paradoxical: by excluding death from our life we cannot live a full life, and by admitting death into our life we enlarge and enrich [life]."

It's weird how you get an inkling, and then two days later you're emailed something that expresses and expands that inkling in a far deeper, more beautiful way! Her sense of the reality of death somehow "extending" our limited lives is remarkable and true.

I'm hesitant to talk about all of this as I know I'm a rookie in the pain game and have so little real-life experience of real death. But, as I've mentioned before, I also feel that this steep learning curve is opening my eyes to a new, deeper sense of life.

As we enter the season of Advent, this connection between life and death is reflected in the interplay between light and darkness (pictured below in our frosty street at 6.30am today). The darkness adds an allure and luminosity to the light which wouldn't otherwise be apparent. And then there's the light of the Christ-child; God learning what it was like to take on human skin, walking in the valley of the shadow of death but ultimately overcoming it.

May we all be encouraged to follow the stirrings of our hearts, and our inklings, whatever we're walking through, whevere they may lead us, at this busy - but blessed - time of year.

Advent wishes, and peace, life and light, to you all!