I’m now 5 cycles into my latest round of 8 chemo treatments. Last week’s scan (after 4 cycles) showed that the tumours in my liver and lungs had expanded by a millimetre or two, so slightly disappointing that they hadn’t reduced. On a positive note, my cancer blood markers and liver function had both improved significantly. So I’m cracking on with all 8 and I’ll have another scan at the end.
Today is 12th June 2018, the first anniversary of my operation and my stoma’s birthday. Although it wasn’t formally confirmed for a couple of weeks, in reality 12th June 2017 was the day my bowel cancer was diagnosed. My surgeon told us that he was 99% certain that the tumour he’d removed was cancerous and that it had probably spread into other organs. Days don’t come much worse!
So, here are a few random reflections on my first year living with stage 4 bowel cancer:
• The couple of weeks leading up to my operation were horrendous. I was in a shocking state with acute stomach pains and vomiting. But it wasn’t until my third A&E visit that I finally had a scan. It was a desperate time for us.
• An enormous shock. I expected my appendix to be whipped out, but woke up with bowel cancer and a stoma! Nothing had prepared me for that. As well as being physically weak, psychologically this was a knock out punch.
• Cancer isn’t just about the patient. Sarah turned up on the ward still thinking I had a spot of appendicitis. She and the kids (actually both in their 20s) have to contemplate life without me around. Proper support is needed for family members, but the funding for this (in Wales at least) has been cut.
• Life’s changed. I’ve given up work and my illness and treatment have now completely taken over. Everything else is fitted around my frequent appointments. Planning ahead isn’t easy as things frequently don’t run to schedule. As serial planners, this has been a big adjustment for us.
• I entered a bewildering new world. I knew little about bowel cancer and even less about stomas. I was thrown head first into an alien environment, learning new medical terms and jargon and how to manage my stoma. The staff were wonderful and explained everything, but there’s just so flipping much to absorb. And I’m still learning and refining my knowledge.
• The treatment is hard. Chemo is nasty, poisonous stuff: it’s not targeted and basically carpet bombs your body, destroying healthy cells and hopefully taking out a few of the cancerous guys as well. That’s why you feel so shitty when you’re on it.
• I pinned too much hope on my clinical trial which didn’t work for me. That’s the nature of drug trials.
• Cancer folk talk about “scanxiety”. Life is punctuated by my scans and the subsequent results meeting with my oncologist. They take place every 3 months or so and provide the only real indication as to whether my treatment is working. Scanxiety intensifies as the date approaches.
• I’ve had countless needles stuck in me in the last 12 months and inject myself daily with a blood thinning drug. I don’t have much time for people who are squeamish about needles.
• The people I’ve encountered working in the NHS are, almost without exception, amazing. It functions, to a great extent, on their goodwill. They’ve given me a renewed faith in human nature. Please, for goodness sake, let’s fund the NHS properly.
• We’ve all heard the horror stories, but the food on my ward at the Heath Hospital in Cardiff was excellent. Perhaps because it’s a surgical ward they were looking to build my strength, but no complaints from me.
• I can’t see or feel my cancer, but I know it’s there, quietly doing it’s thing.
• About 10% of people with stage 4 bowel cancer survive more than 5 years and I’m one year in already. The clock’s ticking…
• I think I know what I’ll die of. It’s more a question of when. 10/1 it’ll be some time after mid 2022, the same odds as Belgium winning the World Cup. England are 14/1 by the way, so my chances of getting to 5 years are marginally better. That’s not a great comfort!
• Most of our friends have been fantastic and a great support. Sadly a very few are conspicuous through their silence. Saying something is definitely better than saying nothing.
• I’m strangely content. I do more of the things I enjoy, seeing friends and family, walking, reading and watching cricket. I’ve become involved with Bowel Cancer UK, raising funds and trying to increase awareness of the disease. And I blog and tweet about it.
• Only those who’ve been directly affected by the disease really comprehend it. Sharing experiences with others living with cancer, both in person and via social media, has been a great help.
• I’ve been an atheist for years. My cancer hasn’t changed that, but if it turns out I’m wrong, I’ll be having words…
• I’ve acquired a taste for Jelly Babies. They help regulate my stoma output – yes really!
• With my stoma I can eat pretty much everything. I’d rather have my old bum back, but my bionic belly bottom is surprisingly easy to live with. I’ve refined my stoma maintenance skills and even grown quite fond of the little fella – well without it I’d quite probably be dead!
• I look normal, feel ok most of the time and I’m pretty cheerful. That’s great but it doesn’t mean my cancer’s gone away, it’s just hidden. I think some people forget that.
• The only fight I’m in is a mental one. There are strong views on this in the cancer world, but I’m not a fan of the “fight” metaphor. It implies that if you battle hard enough you can defeat the disease, and that’s wrong. Worse, it suggests you’re a loser if you die and that’s just bullshit! Positive thinking is all very fine, but it can’t cure cancer. And while we’re on this, I’m only on a “journey” when I’m travelling somewhere! Ok, that’s the ranty bit over…
• There’s a lot of ignorance about bowel cancer’s symptoms. It’s the second biggest cancer killer in the UK, yet people still seem uncomfortable with the murky world of bowels, bums, guts and poo.
• Diagnosis is a huge problem. The symptoms, unfortunately, are common to many other bowel conditions. There’s a lack of awareness of bowel cancer in younger people. Early diagnosis significantly increases survival chances and the disease is cheaper to treat: call me an old cynic, but most things come down to money in the end.
• Screening at 50 should be introduced across the whole of the UK, in line with Scotland – something I’m acutely aware of, having been diagnosed at 52…
• My treatment at Velindre Cancer Centre has been outstanding. If you’re going to have cancer, you could do a lot worse than get it in the Cardiff area.
• Bowel Cancer UK is an extraordinary charity. Their chief executive, Deborah Alsina is exceptionally driven and committed and this filters through to everyone I’ve encountered in the organisation. The Welsh team, Lowri and Mike have been a great support to me.
• There aren’t many genuine positives to having stage 4 bowel cancer. For sure, there are some nice little side benefits: people are generally nice to me, I see more of friends and family, I’m generally less stressed and I get to watch a lot of cricket (not everyone’s idea of fun I know!). I may come over as positive and upbeat most of the time, but I have to work at it.
• I’m not afraid of dying, just somewhat pissed off about the chunk of life I’m likely to miss. Family stuff and seeing my children’s lives take shape – they’re the hardest things to come to terms with.
Bowel cancer is rubbish. I don’t take anything for granted, but anniversaries do have a greater significance now and I hope I’ll be celebrating a few more yet…