I've been meaning to update the blog for weeks now, but every time I'm about to do so, another vagueness crops up and I put it off until I find out what's next. So apologies for the radio silence since late July, but here we are and the vagaries continue.
When one thinks of cancer treatment, one does not think that quite a lot of it is a finger-in-the-air, suck-it-and-see approach. But our experience has shown us that it is. It's moderately disconcerting that no one is able to provide a "this will sort you out" response, although that is obviously all you want.
Rolling back the clock, when I last updated you I was just beginning a rather glorious chemo holiday (or chemoliday, as my bro likes to call it) which lasted all the way through to the day before yesterday when I started a new regime with a new type of chemo. Meh. The summer was, as a result, about as good as Bekky and I could have hoped in terms of cancer.
I still had fortnightly doses of Avastin throughout which was mostly tolerable and, you'll be delighted to hear, I'm sure, that thanks to botox and careful management, my bum is behaving almost as a normal bum would behave. We still have our moments, the bum and I, but largely I am as pain-free in that department as I have been since before I had the stoma fitted in November 2016.
However, having been fairly steady, my CEA levels started to climb back in July, slowly at first but then September saw a fairly sudden jump from about 4 to 6.6 and two weeks later to 9.3, despite having had a tumour in my liver and two in my lung zapped. Not a huge number in the grand scheme of things but we don't like upward trends. This was a worry. A CT scan was booked.
At about the same time, I started a course of probiotics on the recommendation of a nutritionist I had been to see. Initially this had a very positive effect on my digestion but after a couple of weeks I started to get strange pains in my gut and a new pain in my back that would occasionally radiate down into my groin. This was disconcerting and one of the most fabulous side-effects of cancer is that you automatically assume that every single ache, pain, niggle or twinge is a new tumour that is definitely going to kill you in a matter of days.
So I took my new ailments to the (locum) doctor who decided it was probably my kidney stones on the move. My CT was due two days later so he suggested I see what that produced and work out what to do from there. However, the following morning the pain was worse so I sought advice from my oncologist who told me to get myself down to The Conquest Hospital and get checked over. I spent the day in the Surgical Assessment Unit, had an x-ray and a CT (without dye) and spent many hours in a waiting room. Towards the end of the day, I was told that my kidney stones were not, after all, on the move, and they couldn't see anything untoward so I was sent on my way with the hope that the CT scan (with dye) the following day might tell us more.
Well, that's not strictly true - it didn't show up anything conclusive relating to the back or the tummy, but it did show up a "shower" of new small spots in the lungs. So we sent the scans off to my bowel and liver surgeons to see if they had anything to add and they didn't. More vagueness. The lung surgeon said that we should just leave things as they are, allow the lung spots to grow and, when big enough, he would then zap them. The oncologist thought this was probably not a good idea. I'm not sure we heard anything back from the bowel surgeon.
So the decision was taken that, given the new spots, the unexplained pain in the back, and the rising CEA levels we would return to chemo forthwith. This time, however, I would be trying a new (to me) type of chemo called Tomudex which allegedly might be a bit easier on my gut and not interfere with my DPD deficiency, meaning I could have something approaching a full dose. The Avastin would continue in tandem. Whether any of this will help remains to be seen - it is, once again, a suck-it-and-see approach.
Meanwhile, an MRI of my dodgy back has been organised for tomorrow - the oncologist feels it's likely to be simply a bad back, but she threw in a gentle caveat that it might also be "something we'd rather not know about", i.e. a metastasis of the cancer to the spine which would most likely curtail my existence somewhat drastically. So let's hope it's not that, eh?
Tomudex started the day before yesterday, hence I find myself with a general sense of malaise and an abundance of time on my hands. Thus far, the side effects have been largely similar to the previous chemo although not suffering deeply traumatic bum pain is a bonus. But I feel poisoned, unwell, lethargic, out of sorts so hopefully this stage will pass quickly and I'll be back to normal soon.
The last few months have been pretty good, all things considered. I've been back at work pretty much full time, I've been out and about socialising, spent a weekend at the Silverstone Classic with my bro and some good mates, DJ'd at no fewer than three parties (including the village 70's disco to raise funds for Bekky and my cancer expenses - thank you Udimore), had a reunion with some old school mates, you know - doing things normal people do.
Life has been as near as it's ever likely to be to normal, which has been a joy. But now we're back in a place of vagueness, uncertainty, anxiety and poison. I don't recommend it, although I hope it is short term pain for longer term gain. All we can do is continue to live in hope.
On Saturday, the wonderful Richard Kent died. He was 33. He was a fellow bowel cancer patient who was diagnosed less than a year ago. He lived not far from us, near Eastbourne, was married to an amazing, incredibly supportive wife, Gemma, and they had a 5 year old daughter, Chloe, and a puppy called Bailey.
We met after Gemma got in touch through this very blog in March this year - Richard had had a very rough ride after being fobbed off for months until he had emergency surgery in November to remove a tumour the size of a tennis ball from his bowel. Sadly his cancer was aggressive and despite trying all manner of different things, nothing was able to halt its progress. He was admitted to a hospice in early September and died in early October.
We only met a couple of times but were in touch a lot via social media. My impressions of him were that he was a gentle, kind soul with a gentle, kind face. He was softly spoken, approachable, a delight to chat to, a good man. We shared a common interest in cancer and cannabis oil and I was able to supply him a couple of bottles which I hope helped a little bit. But sadly, so sadly, he was diagnosed too late and he never really stood a chance against such a hostile cancer.
Bekky and I have been devastated by his death. He was too young, and he leaves behind a beautiful family whose only wish is that he was still with them. It is also very close to the bone for me, for obvious reasons, but more importantly for Bekky. Gemma has just lived through her worst nightmare. Her soul mate has just carried out the most final of disappearing acts, the ultimate act of abandonment, and that is a horrific thing.
But it also allows me to count my blessings - I have been with cancer for two and a half years now and I am still firing on most cylinders. Doubtless it has taken its toll - I am weaker, I am less confident, I am often in pain - but I am still here and the treatment appears to be keeping things in check. I am also lucky that my cancer variant is obviously less aggressive than that which was bestowed upon Richard.
I suppose it is inevitable that the more one surrounds oneself with fellow cancer patients, be they through social media or in person, the more often one will be forced to face death. It never gets any easier though.
Richard did not deserve this. Nor did Gemma, or Chloe, or Bailey, or any of his family. His funeral is next Wednesday and that is going to be a hard day for all.
Gemma, if you're reading this, Bekky and I think you are astonishing. Brave, strong, caring, kind and, like Richard, a fundamentally good person. We can only imagine what these last few weeks will have been like for you. We both cried when we heard the news. We hope you are surrounded by friends and family to hold you up and support you during these dark days. And we cannot begin to express how sad we are for you all. We send you all our love, as that is all we can do, and we will be there on Wednesday to offer our support and remember your wonderful husband.
Please take a few minutes to read Gemma's fantastic, utterly heart-rending blog here.
Rest in peace, Richard.