In which Richard talks at length about his bottom
Right then. Update time. I promise to do my best to keep things brief, although there is, as ever, plenty to report.
Things are currently relatively rosey - relative being the operative word. The chemotherapy is on hold for two or three rounds so I'm feeling more human than I have since March; my tumour markers are lower than they have been in ages; I'm taking active steps to get my exceptionally painful bum under control; and it has been hot, sunny and generally summery which always helps.
The chemo is on hold because it was all getting a bit much. After round eight of this "season" (round 25 in total, I think, although I'm beginning to lose count), two days before the next scheduled dose I still hadn't fully recovered from the previous round. In the early days, I would feel pretty much normal after about six or seven days, but the effects clearly accumulate over the weeks so by this stage it was taking me 12 days of the 14 day cycle to recover and that was depressing, frustrating and difficult.
As a result, I took the decision to request a short "chemo holiday" - my oncologist agreed to the concept on the basis that things are currently holding fairly steady and I was due a review of my treatment anyway a few days later. I am still having treatment in the form of Avastin every fortnight but the side-effects by comparison are minimal and it allows me to lead a fairly normal life.
I am a firm believer that stress is a major contributing factor in dealing with, and hopefully beating, cancer, and being low and stressed by chemo can only be damaging. A balance between treatment and wellbeing needs to be achieved and I think we're pretty good on that front. We are at the moment, anyway.
My tumour markers (CEA levels) are well down, from 14ish in March to 3.6 today - anything below 5 is considered normal - and I am now theoretically tumour-free in my liver following further Radio Frequency Ablation late last month. Behold, I've made a handy illustration of my fluctuating CEA levels since diagnosis because I'm an incurable geek...
The spike early this year came about when I wasn't having any treatment at all which shows that my type of cancer is clearly fairly aggressive but for now it's on the way down/hovering in the 3s so that's positive, at least in the short term.
There's more RFA to come next week - the third time I shall be knocked out in less than a month - when the great Professor Leen at the Princess Grace Hospital in London plans to hit two tumours in my lungs that are big enough to be hit. There are others but when we last looked, they were pretty small so we can't zap them unless they get bigger. Hopefully the chemo will get rid of them anyway, but if they do grow at least we know we can try to tackle them via another route if needs be.
Now, the following bit of blog is all about my bum, so if you are of a delicate or easily-offendable nature, look away now. I'll let you know when you can look again.
Aside from the general topic of cancer, the continuing pain in my bum is by far and away my greatest problem. Like my CEA levels, it fluctuates but on a much shorter term basis, and if we were to bring it under control, life would be significantly rosier.
Take the last 24 hours, for example. Yesterday was a good day - pretty much pain-free despite three "bowel movements", or BMs as I shall refer to them henceforth. In the evening, shortly before bed, there were occasional sharp pains but they were brief and fairly unremarkable, although they did make me wince. I retired to bed satisfied that I should be able to see the night through. I was wrong, however, as my bum woke me up at about 4am and informed me that I would do well to hasten to the loo, and I duly obliged. A modest and almost entirely painless BM followed, after which I returned to bed and slept.
It being Sunday, I woke up at about 8.45am and lay in bed contemplating life for a few minutes. Then, fairly suddenly, my bum metaphorically tapped me on the shoulder once again and off I trotted to the loo. The BM that followed started out fairly painlessly then quickly increased in pain until it was a searing, burning, constant agony. And I mean agony. Imagine, if you will, that someone was to liberally coat the inside of your bum with some fairly potent acid and you begin to get the picture. I yowled and groaned and moaned and whimpered, then took to the sofa where I continued to yowl and groan and moan and whimper for a full hour before the pain finally began to subside. Even now, as I sit here typing this, it hurts. I am afraid to move, afraid to eat, and petrified of needing a further BM which is by no means unlikely.
So last week, following an appointment with my bowel surgeon, Ian Jenkins, the previous week, I found myself back at The London Clinic (my most favourite of hospitals, if you can have such a thing) for an EUA - Examination Under Anaesthetic. It had to be under a general anaesthetic because the pain of being examined while awake was too much to bear. The great man had a good poke about while I slept and, while he was in there, also injected some botox. Yes, you read that right. Botox. He had found that my rectum is very "excoriated" (his word, not mine) and there are various fissures where the lining has been repeatedly torn, healed a bit, then torn again, then healed a bit, etc. Hence the pain. Botox, I gather, relaxes the bum and prevents spasms and the fissures are much more likely when spasming than not. So in theory it should help, although given this morning's shenanigans it does not appear to have done much. Sad emoji.
I hope that things will get easier as the botox does its thing and the fissures begin to heal properly. It has, without doubt, been better of late, but twice in the last week the pain has been utterly excruciating. The situation continues to be monitored and further surgery is possible if needs be but if that doesn't work, I believe my only options are either to put up with the pain for good (not a good option) or return to having a stoma (an even worse option) so we have to hope that a corner will be turned soon.
If you looked away because you are of a delicate or easily-offendable nature, you can look again now. Also, shame on you. You're either on the bus or you're off it.
In the meantime though there have been some good things - a day at Lords with some old friends, a weekend at the Silverstone Classic with my bro and some wonderful local mates, and I have been well enough to catch up with other friends when possible which has been fab. And on the horizon we have a 70s disco in the village hall next weekend to raise money for a couple of charities and, amazingly, to start a small fund to help Bekky and me pay for the many ongoing costs of cancer (cancer is sodding expensive - travel, consultations, sperm storage etc), a trip to London to see Book of Mormon (a birthday present from several mates for both Bekky and I) and a reunion with my old school housemates to mark 22 years since we left...! So it's not all bad.
And what's next? Well, some more general anaesthetic and a night at The Princess Grace on Wednesday for tumour zapping; some further close monitoring of my bum; another round of Avastin; and a decision on whether/when we return to full on chemo. The latter depends on how my CEA levels are doing and what the latest scans show so we'll find out more in the next couple of weeks.
And in amongst all that, Bekky is hurtling towards the end of her MA so she's working every available hour to get her final project finished. There'll be an exhibition in Brighton in September, to which you're all invited.
I have failed miserably at keeping this brief so apologies if you're bored but if I'm going to provide an update, it may as well be a full one!
Thank you all as ever for your continuing support.