This is the eighth of my ongoing series of posts about my latest adventure – being diagnosed and treated for bowel cancer. It follows on from all the previous posts which started last year. It covers my most recent consultation, a huge decision on treatment and being offered my biggest physical challenge to date. This one is entirely personal, with no trigger warnings and nothing this time about research or statistics, but it does mention a seriously good, entertaining BBC podcast. In line with that, I have tried to inject some humour into this post, which for the first time does not contain any explicit outside references or explicit photos.
On my birthday this year I told my sister-in-law that if I was offered the chance to live to the age of 64, I would take it. That would give me another 11 years. On 15 February next year, I will turn 54. But the prospect of sending you a valentine the day before look remote. I’m sure I will receive greetings and possibly drink a bottle of wine on the day. But when I’m 54 (rather than 64) there is a greater chance that I will be ‘losing my hair’ and, quite probably, losing my ability to ‘kick my cancer’s arse’ – the title of this edited Macmillan version of my journey.
I will explain…
On 8 August I went into hospital for a new consultation and to learn of the prognosis going forward. This followed on from an MRI scan on 29 July and a PET-CT scan the following day. It was also on the same day as the hepatic MDT met to discuss my case. Unsurprisingly, surgery was not an option ‘at this stage’, but what was surprising was that my cancer lesions had only ‘stabilised’. That is, they had not shrunk, despite three further cycles of chemotherapy in May and June. In fact, some had increased slightly, compared with previous scans in April. The largest one now measuring around 60mm. Again, the MRI did not clearly identify the indeterminate lesion which was previously discovered in segment 6. However, a newer 7mm lesion has been discovered in my lung – and there was a ‘90% chance’ that this is cancer. This is referred to as M1b, meaning the cancer has now spread to two or more distant sites or organs. Whilst the original metastasised bowel cancer had spread to the liver, via the lymphatic system, it had become ‘systemic’ and probably spread via the bloodstream. The earlier fear that my particular cancer had become resistant to treatment was becoming apparent. It was not good news and it was disappointing to learn that despite all my best efforts, and the efforts (and prayers) of others, we might be losing control in getting on top of this.
As outlined in my previous entry scenario [1] – a liver resection option is beginning to look increasingly unlikely, while scenario [2] – chemotherapy which only contains and is non curative looked more likely. One option, with the ‘door closing’ on a curative course, is to go back to hitting the cancer hard with an adjusted regime of neoadjuvant therapy that throws everything at it. The first of two possible ways forward is to switch to FOLFIRINOX – returning to the main chemotherapy drug from before – Oxaliplatin (at a lower dose) – but adding Irinotecan into the mix. The antibody, Cetuximab, administered alongside FOLFOX since late January, would cease to be given. So no more rash on face and chest. Apparently this appeared to have stopped having any benefit, although between January and April it appeared to do so. FOLFIRINOX would be the best chance of reducing the size of tumours, but as the oncologist kept saying, that ‘door is closing’. It would require a fortnightly session, with a similar overall dose of chemo, but not as much Oxaliplatin – which has caused the worst and most frustrating side effect of (peripheral) neuropathy. It would require a PICC line and a pump that is connected to the line which carries on administering drugs for two days after each hospital visit. Maybe this would be fixed for the whole, further 12 weeks of treatment. I was only being offered this option at all because of my relatively younger age and physical fitness.
Alternatively, we would switch to FOLFIRI – mentioned in my previous post under scenario [3]. This is a combination of Folinic Acid, 5FU and Irinotecan. This would be given on a three weekly cycle – long dose, followed by two shorter doses. One major advantage of this, for me, is no more Oxaliplatin and no more debilitating neuropathy. Two disadvantages are it is more likely to cause diarrhoea (which impacts on stoma maintenance) and is very likely to cause hair loss. Up until now I have only a had a bit of hair thinning (including eyelashes) but nothing serious. Compared with neuropathy these would be a minor inconvenience. There would be no PICC line, no pump and no return to neuropathy. Any digestive and stoma issues could be managed as they have been up until now. On the downside, in clinical trials, only around 2% of patients experience any tumour shrinkage with FOLFIRI.
Both courses would last for three months – starting in mid to late September and continuing on to December. At a point which would be roughly a year since my original consultation in Norwich I would have more scans. At this point a(nother) decision would have to be made whether to give up trying curative treatment and go ‘palliative’. It is already heading that way. If the tumours continue to grow, despite treatment, then there is not much that can be done. The phrase ‘ life limiting’ used in this circumstance effectively means around 6 months to live from the point of stopping treatment. By December, if the chemotherapy chosen has kept things at bay, then a possible further six months of life would be possible, but exact numbers are hard to predict. Either way, it is not looking hopeful. I was left to make a decision over one weekend, whilst the local, annual carnival and family celebrations took place.
My Decision
On 12 August, the hottest day of the year in the UK, I went back to the hospital to give them my decision. I stressed that I was of sound mind and that the decision was 100% my own with no influence or persuasion from family. This was important! At the last minute another cancer sufferer told me how convenient a PICC line can be. However, I had already made up my mind by that point. I have decided to go with the FOLFIRI option, which means effectively giving up hope that my tumours would ever reduce in size – and certainly not enough to have surgery. It means a better quality of life – at least for the next three months. Treatment will not start (again) until Monday 16 September and by then, we are probably at the ‘point of no return’ anyway. I received my schedule yesterday and it looks like I’m going in every Monday for 12 weeks, taking me to Monday 2 December (inclusive). I’m not completely giving up hope. I still hope that the next scans – probably just after Christmas – reveal that things have been ‘contained’. I am being realistic rather than pessimistic and will maintain a positive attitude towards everything. I realise that information given during consultations should not give any false hope, which is why I usually ask for both the best and worst case scenarios going forward.
In terms of Kubler-Ross’ five stages of grief model, I’ve been through denial, anger, bargaining, depression, back to anger and, finally, acceptance. Shrugs shoulders… ‘oh well, we’ve all got to go sometime’. It has been liberating. Homer Simpson managed to go through all five stages in about 20 seconds when given 24 hours to live in one early episode where he eats potentially 'poisonous' blowfish. Although in that version, he experienced fear or anxiety rather than ‘depression’. But hey, I’ve got both of those T-shirts. I might return to a bit of bargaining again at my next (telephone) consultation in September and again after the next scans when my fate might be truly sealed. My decision will be fairly irreversible once the next wave of treatment starts, unlike my stoma, which is in fact reversible. However, I have already decided I’m not going back to the traditional method of toileting!
Laughing about Cancer
Since the last post, I’ve been listening to Jon Holmes – Says the C-Word Podcast. This series grew out of Holmes’ experience of being diagnosed and treated for prostate cancer. It focuses on men, who are notoriously poor at talking openly about dealing with cancer. He interviews several well-known men (including Eric Idle, Jeremy Bowen and Matt Forde) who have gone through their own experience and is shot through with a lot of humour. Having a laugh about the embarrassing indignity of it all is clearly one major kind of coping mechanism. It goes into necessary honest and graphic detail and, therefore, makes it incredibly reassuring and educational. A couple of episodes are given over to listeners’ stories. I submitted mine, but it was probably either too long or not funny enough. Apparently a thousand people emailed in. All episodes can be found on BBC sounds. Highly recommended if you are a man who has gone through this experience.
From Laughter to London
There were laughs this week at the Men’s Group that I attend in Norwich, too. I mentioned the podcast, particularly the funny focus on prostate cancer treatment. I injected my own sense of gallows humour at the end of my consultation, too. Faced with long odds for survival, I deliberately mentioned my recent offer from Macmillan to have a place at next year’s TCS London Marathon. The oncology doctor was very reluctant to advise on which course of treatment to choose and, understandably, even less keen to express an opinion about whether I would be any kind of fit state to undertake such a massive, physical challenge on Sunday 27 April 2025. I actually joked about it possibly being the last thing I ever do! It might well be. If you are given nine months to live, what would anyone do? They would sign up and intensively train for a marathon, of course!! So on the same day as having to confirm my treatment decision, I also had to decide whether to accept my place and pay a non refundable £100 registration fee. Two major decisions on the same day. I also applied to Cancer Research UK with almost identical wording, but didn’t get chosen. Whilst I will continue to do Saturday park runs, 5k to 41k seems ridiculous, a fanciful idea. I might not ever get to take part. However, it would be a massive motivation to get me through the next winter and avoid falling into any depression again. It has been a lifelong ambition to do it once, ever since I watched the very first marathon from the end of our street on the Isle of Dogs (Dick Beardsley, Inge Simonsen, Peter Duncan, Bernie Clifton, and, gulp, Jimmy Savile et al). As a 10 year old, the age I was in 1981, I had three ambitions: To one day run the London Marathon, to write a book and get it published or to have a top 10 solo hit single. One of these would suffice. One is looking increasingly likely, the second one is still a possibility, as people tell me that I write well, while the door has probably closed on the third, although there is still hope if I can get Gareth Malone involved!!
Taking part in the marathon is the second item on my (still to be written) ‘bucket list’. So, before publishing this post, I spoke with a few friends (with others to follow) who I know have run long distances and will join my local running club, ‘Runners Next The Sea’ in order to train properly and have a set training plan organised for the next 20 weeks or so. I will also join The Ostomy Studio. Pilates class to strengthen core stomach muscles. I attended a free session on 14 August. I have to raise a minimum of £2,500, the main condition of being offered a place. There is 8 months to go and that’s from 26 August – when I will start training properly. Meanwhile I will walk the ParkRun in Holkham on 17 August, following ingrowing toenail treatment, and volunteer the week after. On 29 September I will take part in my first 10km on the Sandringham Estate as I build up my distance. More to follow.
Conclusions
So, this very personal decision appears to have liberated me. It has sharpened my mind already and, like Homer (the Springfield one, not the Ancient Greek one), it is encouraging me to make the most of each day I’ve got left remaining. Who knows how long? There might be a surprise or two still to come. But Carpe Diem and other clichés. Oh and the ‘bucket list’ – still to be written, but I am formulating some ideas now. Still got that very long shot to get to see Ashes cricket at the MCG (Australia) in December 2025. Next week I will visit the Lake District for possibly the final time, visit Manchester and go to Old Trafford. I will also look to do parkruns in other parts of the UK – such as Blickling Hall and Abingdon.
Next time on ‘Phil blogs about the C-word’ : My theories on how I developed cancer. A marathon training update. Will faith return? Prog Rock or Prognosis: Which one better predicts the future? All to be confirmed! Watch this space!!
No longer ‘kicking my cancer’s arse’ in ignorance.
