My last proper blog update was in early November, a week or so before bowel surgery, but that’s not to say there hasn’t been plenty going on since. That said, the plenty in question has, as you can imagine, been almost entirely cancer-oriented. Recovery, hospitals, scans, chemo, meetings, community nurse visits, pills and potions, minor surgery and many, many, many hours spent sitting in assorted hospital waiting rooms.
However, in between waiting rooms, Bekky, myself and the dog did at least manage to escape for a couple of days over Christmas to our wonderful friend Emmy’s idyllic cottage in Somerset (Emmy and her boyfriend were in Margate at the time) which was sheer heaven - the cottage is nestled next to the River Brue, overlooking a ludicrously picturesque little arched bridge in front of a pretty 14th Century church. We had no idea just how much we needed to be somewhere else until we got there, lit the fire, settled in, slept, ate, walked, read, and just relaxed at last. Thank you Emmy, so much.
Our arrival for a cheeky Christmas Eve pint at The Castle in Bruton High Street happened to coincide with that of the carol singers who were in fine voice and which we thought was about as festive as one can get, but then that night, as Bekky and I drifted off to sleep, we could hear the carols of midnight mass wafting through the stained glass windows of the church and across the river. It was like going to sleep in a Christmas card.
Added to which, my amazing, kind and thoughtful office arranged the annual pre-Christmas lunch at The Plough, our most local and lovely pub, largely so that I would be more likely to be able to attend, which of course I did and had a great time - thank you all so much. For the first time in my life, I was the first to leave a party. Definitive proof, should you need it, that I am not well.
Back to reality. The surgery, you'll be pleased to hear, went well - I walked myself down to the theatre, had an epidural fitted (“1 in 100,000 die in the process, you know” chirped the anaesthetist who fitted it) and was knocked out. The op itself lasted just under 6 hours, during which time they cut a 12” hole in my middle, rooted around a bit, found the offending tumour, peeled it off the bone then glued me back together again while managing to retain all implements involved and leave not even a bolt-cutter inside me.
Now here’s the bit that bowls me over: I was wheeled out of theatre at about 7pm and was transferred from recovery and to intensive care just after 9pm. I got some sleep despite the wailing woman opposite me who kept nearly falling out of bed, and the other woman beside me who had to have her catheter refitted in the middle of the night while wide awake which, by the sounds of things, is not recommended. And at 7am the next day, having already been given a bed bath by a burly Nigerian nurse chap, I was out of bed, sitting up in a chair with a cup of tea, a pain au chocolat and a newspaper. No idea what I read. And my legs didn’t work at all as I still had the epidural in my back. But 12 hours after waking up from major surgery I was sitting up, out of bed. Truly amazing.
And that rather set the tone for the rest of my hospital stay. I awoke with a vast tangle of tubes, wires, drains and other accoutrements coming out of me but the number quickly dwindled over the next few days until I was left with just my long-term partner with which I am still blessed today - my stoma bag. More of that later.
I was looked after by a bevy of wonderful nurses in a very comfortable room with a private bathroom that wouldn’t have been out of place in a five star hotel (aside, perhaps, from the waterproof chair). And I was up and about from day two, being marched further and further from my room each day by the charming Belgian physiotherapist, Charlotte.
Many exercises. Much stretching. A standing-up shower on about day 3. And in under a week, talk of going home. Extraordinary. Enhanced Recovery, they call it, and it certainly seems to work.
Recovery at home was under the watchful gaze of my wonder-wife. In her own words, those first couple of weeks at home were "hardcore" - emotional, exhausting, extremely hard work given the number of different things she was juggling at the time, and even a bit scary. Week 2 in particular came with some pretty serious pain which we struggled to control but it slowly passed and thankfully, by the middle of Week 3, things were beginning to settle down.
I was driving by the end of Week 4 and we were then immediately back into yet more hospital appointments. Hoo-flipping-rah. My oncologist checking that all was well and spelling out the next steps; a postoperative review with the surgeon in London who confirmed he had succeeded in getting the tumour out in its entirety (SOME GOOD NEWS AT LAST!). And before we knew it, we were back in a small room at The Conquest Hospital for a second chemotherapy introduction chat, a couple of days before Christmas. Festive.
Now, we probably should have guessed, but surprise surprise, it turns out that that I have low levels of dihydropyrimidine dehydrogenase, or DPD. How did we miss that?! For the very few of you that might not have heard of dihydropyrimidine dehydrogenase, this is an enzyme that helps the body break down the chemotherapy drugs fluorouracil and capecitabine, whose combined efforts nearly killed me last summer. If you have low levels of DPD, these chemotherapy drugs cause more severe side effects than usual. Or even death. Between 3 - 6% of people have a partial DPD deficiency.
After sending a blood sample off to St Thomas’ in London, we were informed that anything over about 25% of the dose I was given last time around would do its best to kill me once again. To play it safe, my oncologist suggested that I started off on a dose of 10%, which in itself was reassuring.
Before chemo began, however, I was to be fitted with a Portacath. This is a cunning little implant, inserted under sedation and local anaesthetic, that sits beneath the skin on the chest meaning a needle can be passed through the skin into the port each time they need to put or take anything into or out of me, thereby avoiding the need for a cannula to be jammed into my arm repeatedly. That’s not to say I’m not used to being cannulated - I lost count a long time ago of the number of times I heard a nurse say “Right. Sharp scratch....oops, sorry, missed. Let’s try again shall we?”
So the portacath. A tube attached to the implant is tunnelled to a second smaller incision where it is then fed into a vein in my chest. The incisions are then stitched and off you go after only a couple of hours. Or so we were told. In fact it ended up taking nearly twelve: six hours waiting, one hour procedure, four hours recovery. I complained after 5 hours of waiting and was told I could help myself to the staff biscuits as recompense once the procedure was over. These duly arrived as I lay in the recovery bay and I duly finished them. Ha. Take that, Delay Fairies.
And then, on Friday 30th December, we were back to the chemo unit at The Conquest for Chemo II - Patient’s Revenge. This, I’m pleased to say, went entirely according to plan.
As I said before, there’s a very congenial atmosphere in the chemo unit. Chemotherapy is a great leveller - everyone is suffering together, nobody wants to be there, it matters not who, what or why you are. You chat, read, stare out of the window, stare at your telephone. It’s quite a long process - first you’re filled with steroids to help you deal with the upcoming onslaught of toxins, then glucose, then the chemo which, for me, runs concurrently with a calcium drip. It takes between about 4 and 6 hours in all.
This time round though, rather than leaving with 63 additional chemo pills in my pocket as I did last time, set to deliver 5,000mg of chemo to me over the following 9 days, I left with a “balloon pump” of chemo in a small container attached to my belt, set to deliver 500mg of chemo to me via the portacath over the following 2 days. Much better. The community nurse duly came to find me on Sunday, New Year's Day no less, to disconnect me and by the following Wednesday/Thursday I was feeling fairly well once more. I even managed to creep up to the boozer on Friday for a swift half or so.
Last week involved yet more hospital visits - first an 8pm CT scan then two MRI scans to get an up-to-date picture of the current tumour status. As I write, we are still awaiting feedback from the MRIs, although we’re not expecting anything too exciting as they are just baseline pictures to compare against post-chemo scans against further down the road. The CT scan however showed the liver tumour has grown a bit - no surprise as it’s been over 4 months since the last liver scan - while curiously there was no mention of the ominous lung nodules in the radiographer’s report. Obviously I queried this with my oncologist who said if there had been anything to remark upon, it would have been remarked upon. So, as ever erring on the side of caution, until we hear otherwise we remain in the mindset that there are nodules in the lungs, they are cancerous and they will need dealing with if the chemo doesn’t zap them first. However, the fact they were not mentioned provides a microscopic slither of light in an otherwise long, dark and seemingly endless, winding tunnel.
I had my second round of chemo on Friday (the dose was increased to 15% and so far so good...) with another 4 rounds to follow, once a fortnight, which somehow takes us through to mid-March whereupon I think they will scan me again to see if it has made any difference. If it has, and it ruddy better, then liver surgery back in London should follow fairly quickly. They will hopefully reverse the stoma at the same time meaning I can revert to pooing like human once more; if the chemo hasn’t done its job, there may be yet more chemo or, we’re told, there are other options, although these remain unspecified so far.
As far as the stoma is concerned...well...I won’t go into too much detail as it is undeniably unappetising, except to say that there’s good reason why the human body was designed with a back passage and not a front passage for this sort of thing. A stoma bag is an utter rigmarole. It requires changing every day in a twenty minute bathroom ceremony involving at least ten bits of kit from scissors and sprays to powders and wipes. It requires me to kneel before the porcelain at least 5 times a day to empty it. It hurt for quite a long time while it didn't fit very well. It inevitably needs emptying at about 4am every night. It requires me to carry a man-bag with me everywhere I go in case I need to change it. It surreptitiously leaks occasionally. I have to watch what I eat and chew more than I have ever chewed before, in a kind of bovine, chewing-the-cud manner. And in order to stay hydrated, I have to drink a litre of St Mark’s Solution every day - 6 parts dextrose, 1 part salt, and some baking powder. It’s not very nice.
But that said, it is a small price to pay for being without a bowel tumour, and it will only be temporary, thankfully. Hundreds of thousands, if not millions of people have these things for life, and they are life changing for the vast majority. They are brilliantly clever and should be greatly respected. Doesn’t mean I can’t wait to get rid of mine though. Once it’s gone, my bowels will never behave the same again, I am told, which I suppose is logical if perhaps a touch sad.
We still have a long way to go, but we are, I believe, heading in the right direction - the liver surgery is a more major operation than the bowel surgery apparently, but there is a slim chance that that will be the end of it as far as tumours, surgery, chemo and the rest are concerned. And that’s a slim chance worth clinging on to. My current hope is that I will be back to normality, work, socialising, and simply existing once more by mid-summer, but as we know, the goal posts move in this particular game so for now I must simply do as I am told, and wait and see.
So I leave you with this picture taken yesterday morning:
6’4” and 11-and-a-bit stone skinny? Check. Attractive stoma bag? Check. 12” scar that runs from where you can see it, down behind the stoma bag and finishes just above my gentleman sausage? Check. Portacath? Check. Chemo balloon? Check. Sizeable new scar that will run across the right side of my abdomen in front of my liver? Not yet...but hopefully soon. New divot-crater-type scar thing that will sit where the bag once was? Not yet...but hopefully soon.
I know it sounds obvious but whatever you do, people, try not to get cancer.
Big love to you all. Thanks for reading.