• Rich

Milestones and Munchies

Last Thursday, 2nd May, was a bit of a milestone. I stood in the buff on my scales and uttered a modest whoop of delight when the little digital display told me I had hit the hallowed 70kg mark. This means I have gained 7.5kg, or a little over a stone, in about 6 weeks and this has resulted in me feeling pretty much human again, for the first time since long before Christmas.

This is in no small part due to the combined efforts of a regular low dose of Dexamethasone and an equally regular lowish dose of cannabis oil, which combine to give me a simply ridiculous case of The Munchies. I have eaten almost without cease since late March, and after several months when even the mere thought of food made me feel quite nauseous, I can't begin to explain what a pleasure it has been. Eating is good.

62.5kg or thereabouts - photo by the extraordinary Sophie Mayanne

I wouldn't suggest that I have eaten very healthily necessarily, but that was not the aim. The aim was to gain weight and I have eaten to affect that result. Anything and everything. I have a stash of snacks that is topped up several times a week and on which I gorge without mercy. The current snack menu is as follows:

1 x Pack Sainsbury's Sausage Rolls (6)

1 x Pack Higgidy Cheddar & Onion Chutney Rolls (6)

1 x Pack Sainsbury's Caramelised Onion & Goats Cheese Pastries (6)

1 x Pack Ginger Nuts

1 x Pack Custard Creams

1 x Pack Caramel Chocolate Digestives

1 x Pack Garibaldi

1 x Galaxy Milk Chocolate bar (large)

1 x Pack Salted Caramel Honeycomb Crunch

1 x Pack Wine Gums

1 x Pack of Time Out Wafers (6)

1 x Sainsbury's Victoria Sponge Cake

Selection of Cheeses


Ice Cream (obvs).

I think that's it. It's pretty satisfactory, and very self-indulgent, and not very environmentally friendly, nor local, but it works for now, and it's certainly not forever.

The new found snack stashing modus operandi was helped, in no small part, by my friend Simon Aylett who is also blessed with cancer and who, when I first started taking the steroids, kindly supplied me with his patented "Get Fat Quick Box" containing many delightful items including Nutella, peanut butter, salted caramel spread, chocolate covered marshmallows, pork scratching, beer and biscuits. It was an excellent start. I salute you, Mr Aylett. And from there, my snacking skills have progressed with remarkable alacrity resulting in some podge, which is all I wanted.

There was another milestone the other day too. Monday 29th April marked three years to the day since the late, great Dr Rademaker stared Bekky and I squarely in the eyes and said "It's bowel cancer". Diagnosis Day. That was a day, I can tell you.

That's three years of bowel cancer under the belt. Less than 10% of stage 4 bowel cancer patients last more than 5 years, mind, so it's probably not worth celebrating, per se.

At the time of diagnosis, there was a surprising amount of positivity about. It was a bizarre day really - it hit Bekky like a sledgehammer, as one would expect, but I came out of the meeting feeling oddly elated, perhaps because we knew what the problem was, and we knew roughly what we were going to do about it. There was a plan. Obviously we didn't know that things were going to get worse, but that's just one of the many joys of cancer.

No, on the day, the general consensus was that it was curable but needed treatment as soon as possible to keep it curable. It wasn't until 16 months later that the prognosis changed to "There's a chance we might cure it, but there's a greater chance we might not". And, oddly, a further 16 months after that that it changed again to "We're not going to be able to cure it". I was incurable.

And in fact, at that stage in early February this year, my head interpreted "incurable" as "terminal". Everything suddenly felt very terminal. I then had surgery, a horrific round of chemo and dropped to 62.5kg (9st 12lb) as I simply couldn't eat.

This was a genuinely frightening time for both Bekky and myself. Bekky recently wrote very honestly and poignantly about it here. I've never been so weak, fatigued, jaded nor exhausted. There were times during the days after the chemo was administered that I wondered if this was how it would end. Slowly but steadily descending into a state where one is too weak to do anything except lie there and breathe, until such a time as even that gets too much and you just...er...lie there. And then...

There is, however, a difference between incurable and terminal. We're all terminal. That's the nature of life. Sorry about that. It will come to an end at some stage for us all, it's just a question of when. Incurable, however, means that I will have to live with cancer and it is most likely what will finish me off, but there's no specific time frame. Might be this year, might be next year, might not be for a decade or two.

I will have chemotherapy (and whatever other treatment the specialists feel I would benefit from) regularly for the rest of my days, that much we know. There is no end point to that, no "six rounds and then we'll see", but Bekky and I have already got our heads around that concept as best we can. It's an imposition, to say the least, and means that one week in every two will be spent recovering from a good dose of poison. But the last couple of rounds of chemo have been fairly bearable, the good weeks in between the bad could almost be classified as "normal" (while allowing for copious resting and recuperation whenever possible). So it's just a question of getting on with it, in the most stiff-upper-lipped, British fashion possible. While trying one's best to avoid being too stiff-upper-lipped or British about the whole thing.

And if we can continue on that same path, then I think we can live with that.

So there we are. Not much else to report really. The chemo continues, and I expect I shall be scanned again sometime in June once I have a good number of rounds of chemo under my belt. That'll be quite a big moment, as all these damned scans are, but it will also allow us to see if there is anything else such as radio frequency ablation or clinical trials that we could be doing.

We had a brief catch up with my oncologist late last week and she imparted the happy news that my CEA levels - a loose measure of what the cancer is up to - are coming down already, which is good news. It doesn't mean the cancer is disappearing, just that the chemo is helping to contain it to a degree. I don't know by how much, or even what level the CEA is at currently, but I have instructed all those who know my CEA levels not to tell me what the actual figures are as I suspect they will be fairly scary compared to how they were late last year. I only want to know if they're going up or down, and down is just fine for now, thanks.


Now, one final and very important point, in no way related to my cancerous goings-on. Yes, I am using my blog as an advertising medium. Sorry. But it's for my wife.

Bekky has been chosen to exhibit her ceramic work at the New Designers – ‘One Year In’ show which takes place at the Business Design Centre in London in late June. It is "a unique platform for fresh design talent to connect with design educators, professionals and consumers, for creative exchange and collaboration", according to their website and it is not overstating things to say this is a HUGE opportunity for Bekky to take her work and her business to the next level.

The cost of the show, however, is also pretty huge so she is asking for a leg up - in return for stuff, obviously! She has a Kickstarter page in order to facilitate this and has also already managed to smash through her original target. This original target was, admittedly, modest and at a level that we felt she might achieve, although the budget for the show is significantly more than that. It was supposed to be a leg up, but now we're hoping to be able to cover as many of her costs as possible through pledges on the page.

So, if you fancy having a look at her Kickstarter, please do, and if you would like to pledge anything in return for gorgeous Bekky May ceramics (or in some cases, just a hug) then don't hold back!

Thank you.

And with that, I shall leave you in peace until such time as there is anything to report - hopefully not too soon!

#weight #milestone #munchies #dexamethasone #steroids #chemo #chemotherapy #snacks #Diagnosis #incurable #terminal #surgery #death #RadioFrequencyAblation #CEAlevels

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