CANCER ODYSSEY ORIGINS - PART ONE

2300 words / 11 minute read

How did I get started on the Cancer Odyssey? It’s been a long road (over 4.5 years and counting since the word "cancer" was first directed at me), and I continue to feel great despite the odds of my surviving these 5 years being a dismal 1 in 20 when I started - I'm in the top 5% and proud of it! So, in terms of new life experiences, it has certainly been one of extremes.

THE BEST OF TIMES & THE WORST OF TIMES

But how did I get here? Well, life had been going rather well in the period just prior to my diagnosis but, over perhaps the most dramatic six month period that I've lived through, the universe decided to teach me a lesson in "taking the rough with the smooth".

Over a period starting late September 2012, I bought and moved into my own flat, got a great new job, gave my sister away at her wedding, landed the girl of my dreams, found a doctor who could tell me what was wrong with my insides and found myself hooked up to chemotherapy, all in the space of six months.

Far from my initial concerns about being "lost in the system" (the NHS being something of a behemoth after all), instead it was as if everything stepped up several gears as the team at the hospital went "all out" to cure me, despite the fact that the odds were significantly stacked against my surviving these 5 years (let alone beating the disease for good, which was their original aim).

My diagnosis was “T3 N1 M1” which, translated into language us mere mortals can understand, meant that that the primary tumour in my bowel had already moved into “Phase 2: Metastasize” and had sent forth scouting parties to see what life was like in faraway organs: my liver was the first place that was worthy of colonisation it seems.

The doctors (to their huge credit) were fully aware what they were up against and they still went for the cure, though I don't know how they do it in the face of the odds: as I wrote in my opening paragraph, patients with distant metastases (any T, any N, M1) have an average five-year survival rate of approximately 5% (according to the Prognosis section of the Colorectal Cancer Wikipedia page here)

Perhaps my "assertive" personality and relative youth helped in that regard - though I would sometimes see a look of pity on the face of the odd doctor or nurse that I encountered outside my normal teams, so even those in the medical profession who don't specialise in cancer knew I was, to use the technical term for my prognosis, "Officially Fucked" - but I didn't at that stage and I refused to allow any possible negatives to enter my head, throwing myself into combining full-time work with very time consuming treatment as if I was still 100% healthy.

NON-STOP CANCER: NO REMISSION MEANS NO TIME OFF AND NO RESPITE

I had initially refused to take time off after my diagnosis (only relenting to have a few days at home under the increasing pressure from my boss), but aside from that, I didn’t take any real leave of absence and kept on working full time with the intention of trying to live “normally” throughout my treatment.

As a result, the only (relatively rare) sickies that I did take throughout the whole process were after particularly heavy weekends, any effects from the cancer itself I ignored and just kept ploughing on through.

Whilst I couldn't tell you how many hospital visits I made in total over the 2.5 year period, the main cancer treatments were as follows:

• 24 rounds of chemotherapy (two lots of fortnightly doses over six months each time)
• 10 rounds of radiotherapy (daily blasts of radiation over a two week period with a music festival in the middle)
• 6 surgical operations with stays in hospital ranging from 24 hours to a whole week

Now it sounds strange, but because of the brutally constant appointment schedule over such a prolonged period, I grew so comfortable in the hospital environment that I felt instantly at home as soon as I walked into one.

Good thing too, because the schedule really was brutal now I look back on it, rarely having a week that I wasn’t expected to show my face at least once and, depending on where I was in the chemo or radiotherapy cycles, regularly doing the dash from the office to Guy's Hospital three times a week or more.

Over the course of the next two years or so, there was no respite from the onward creep of the tumour and its Phase 2 rollout, which meant there was never a meaningful period of time when I wasn’t in some phase of treatment.

But despite everything we threw at it, the scan every three months would show something new that had grown large enough to show up on the screen, (but even then we’re talking about lesions that are only millimetres in diameter).

Had we caught and contained the original cancer at such an early stage, before it had grown large enough to cause symptoms or (most importantly) entered phase 2 then getting rid of it would have been so easy. Mine had made the move of course - the metastases showing up first in my liver and then later both my lungs before making its dastardly reappearance back in the bowel, back where it all began.

Like the others, this one was only mm in diameter but its appearance was a real fucker given everything we’d thrown at it since treatment began – can you see now why some cancer patients are described as being “riddled” with the disease? Compare these metastases with woodworm larvae or some kind of terrorist sleeper cell: lying dormant waiting for "their time".

That was the kicker for me. It had already been a long path to that point and I'd become comfortable with the reality that the cancer would probably be the end of me, but I thought that was still years away.

This illusion was broken when I asked the consultant looking at the scan what would happen if I stopped treatment and he said I was likely to become "very sick" in a matter of months and my status was to be changed from "curative” (or “possibly curable") to "palliative" (the aforementioned "officially fucked").

Specifically, there were far more secondary tumours than they could see initially and (more importantly) they weren't reacting to chemo the way we wanted them to - that is, the bastards kept popping up, rather than politely fucking off the way they were supposed to be doing.

Slightly shell-shocked, I started processing this info and called on my "case-worker" nurse later that day to ask what it all actually meant. Whilst handing me pamphlets on how to "Get My Affairs In Order", she said that, given how quickly I had presented new instances of the disease until that point, that "months not years" was most likely and when I said "you make me sound like I'm terminally ill", she replied "you are".

They sent me for the radiotherapy this time and then offered me a break from treatment for a couple of months, during which I threw myself headlong into “longevity thinking” and trying out alternative therapies.

For instance, I bought a book about natural cancer therapy regimes (Gherson) to strengthen my immune system, juiced huge amounts of raw fruit and veg, completely cut out sugar and watched videos about the benefits of Rick Simpson Cannabis Oil , even buying canned oxygen and a big glass bong to aid that side of things.

BUT THE UNRAVELLING WAS BEGINNING

Underneath it all, I was struggling with the news as you can imagine, and the positive healthy stuff was being undermined by my constant need to alter my headspace, which was struggling with what my Macmillan Counsellor called an “existential crisis”.

My mind-altering “weapons of choice” were Peroni beer combined with excessive amounts of ketamine, which (for those less familiar with the drug’s effects) has the capacity to render you completely non-functioning, physically and mentally, for short periods of time. You can lose all concept of your immediate environment, of yourself, of time and space, (but most of all) your problems – all of which made it perfect for my needs as you can imagine.

It’s relatively hard to overdose on it, and good thing too, because I was consuming rock-star levels of this stuff and still waking up the next morning alive and “well”. That’s why I dubbed that period as my “Middle Class Freakout”, because had I chosen to use other types of drugs in such a fashion then I wouldn’t be here to tell the tale. I whammed so much of it back over that short period that I could barely function, yet I was still going to work every day “as normal” (but in reality fucked off my face and desperate to return home to continue the “self medication”).

On one occasion, I hadn’t yet been to bed as dawn broke after a particularly heavy weeknight “party for one”. Taking the sun’s rise as a cue to get ready for work, I was able to go through the motions perfectly: I washed and dressed (this was a middle class freakout after all!), walked to the station and jumped on a train. What I hadn’t factored into my “thinking” was that the sun rises very early at that time of year so I found myself alone in that massive open plan office at six thirty in the morning, totally lacking the ability to focus on the screen (as if I had any motivation do any work!).

As you can probably tell, I was all going through the motions to appear outwardly “normal” yet the unravelling was well underway. On more than one occasion, I made the mistake of answering my mobile to a client when I was off my face and, when she brought it up with me privately a couple of weeks later, I told her the painkillers from my recent operation were strong and I’d been greedy. I didn’t like that I had to lie and realised I had to get it together or else people’s perception of my behaviour might change from “he’s a bit odd” to “wow, he’s got a problem”, or worse: “he’s a threat to our business so maybe he should take an enforced leave of absence”.

The only thing I had to look forward to at that point was a trip to Thailand that I’d booked (at the oncologist’s behest I might add - since he fully believed that I was not long for this world, he told me to get some travelling done “whilst I still could”), but it was around this point that the UK government’s public sector cutbacks of recent years finally trickled down to affect me and the healthcare treatment that I could access for free.

Specifically, the drug compound that I had been prescribed was being phased out of use for palliative chemotherapy so I had to return to chemo ASAP, before the window to the Cancer Drugs Fund closed.

In addition, if I took a break from the treatment (to spend two weeks in Thailand that Christmas for instance), that would then invalidate me from finishing the course and render the entire process pointless.

I listened to them (as I always had) and cancelled my trip but as time went on I realised I couldn’t think of anything worse than a six month chemo cycle over the coldest, darkest period of the year with no guarantee if it would actually fight the disease, or merely keep me “treading water” for the period I was being intravenously pumped with cytotoxic chemicals.

Up until that point, I'd wanted to "keep on fighting", believing that if I stayed alive long enough some new technology or something would come along that would help me. But, when they changed my status, this also meant I lost access to certain drugs available through the NHS, and it suddenly made me realise it was all for nothing. Why suffer to extend something that you're not enjoying in the first place?

It was around that point that I realised that the best thing I could do for my sanity would be to run away – so I booked a one way flight to Malaysia to see my Dad, but with no specific plan in place beyond that.

There were two areas on which I was pretty certain though: that I was never coming back and that I would end things when I wanted to (most likely involving a needle and a large heroin overdose).

But even they weren’t set in stone and good thing too, because, whilst I expected to feel better by getting away (which I did, within days), I wasn't prepared by just how much better I would feel simply by removing myself from the pressures of life at home and the measures I was using to handle them.

This has proven to be the best idea I've ever had, but despite outliving the doctors' grim prognosis by another full year so far, there has still been escalation in my symptoms (so what they forecast is going to happen, just not as quickly as they predicted).

To paraphrase and extend the old saying, "the writing's on the wall, but I can't see it yet".

All the more reason to enjoy and embrace my Freedom Philosophy - if I was feeling 100% well then I would be concerned about my money one day running out! Instead I get to freely embrace the joys of non-stop ice cream and self-medication for as long as my illness allows me to, right here in Sinville!

Thank you for reading this far, you can move straight onto part two here, read all about my Freedom Philosophy right here or request the password to take a look through the (self-censored) XXX section by sending me a quick message from the area on the left of the home page.

Much love

Stage-4-in-Sinville
theccconline.blogspot.com