IF YOU HAD CANCER YOU WOULD KNOW ABOUT IT

3000 words / 15 minute read

This is a special "on the road" edition of the Chronicle, brought to you from the riverside town of Kampot and written in the waterfront bar of my guesthouse, whilst taking in these kinds of picturesque views.


As well as giving you an insight into where I currently am, the pretty picture’s presence is designed to give you an easily accessible "happy place" because, as the title suggests, I'll be touching on some subject matter that may mean you "feel my frustration" at the way I was treated pre-diagnosis.

THE ROAD TO OLGA

Here in Cambo, just getting in front of the doc to be told what you know already costs 20 bucks, so coming to live here has really underlined to me how lucky we are in the UK to have the NHS.

Once you are dealing with a specialist, you really see the organisation at its finest - but it's the period just prior to that, between the initial onset of symptoms and my eventual diagnosis, that I have promised to include in the chronicle for a while now, and which ended up being quite a tough time to revisit if I'm honest, because they were probably the darkest days of the Odyssey.

At that stage, we didn't know what we were dealing with, but once I finally had a name for my complaint and we were on the road to treating it, everything suddenly became brighter, despite that diagnosis being about as serious as you can get.

Bizarrely enough, I was actually pleased it wasn't something like Crohn's Disease or Ulcerative Colitis (or even IBS), which would have condemned me to an ongoing debilitating condition for the next sixty years.

In my mind, since cancer could be treated with surgery, all we needed to do was cut Olga out, leaving me back to normal and able to carry on with my life as if nothing had happened - easy peasy.

It never occurred to me for a second in those early stages that cancer might mean the premature end of me.

MARCH 2011

As I write here, I was abroad when I started to feel that all was not quite right on the inside. Since I first felt symptoms in February or March 2011, I really should have been diagnosed by the summer of 2011, and it was totally my fault that this didn't happen - both by underestimating just how strong “jobsworth bureaucracy” can be, and then reacting immaturely when faced with it.

But "shoulda, woulda, coulda" - what's done is done. Platitude, platitude. Cliche, cliche.

Having been away for 18 months, I was living out of my backpack at my sister's place in south west London where, like everyone who's gone off on a "gap yaar" and returned with a bump, I was forced to start my life again from scratch.

I therefore had no ties to any specific area of London so I decided I would make an appointment with my previous surgery over in the east, but I came to regret this decision when the doc asked me to return with a stool sample -  which would be a mission and, let's not beat around the bush, a yucky one at that.

In those early stages, I was keenly susceptible to embarrassment about my condition. This meant that the idea of taking the little spoon and using it to put some of my shit into a transparent vial, which in turn goes into a semi-transparent plastic bag (with my name emblazoned for all to see) was already icky enough - why complicate further by the added pressure of a time restraint being chucked into the mix?

You see, the practice’s policy stated that samples needed to be delivered by 10am on the day in question. There was even a sign stating this and everything - yet it didn't explain why, or what would happen if there was any kind of infringement of this rule.

It was a lovely morning from memory, so I decided to make the poo delivery journey by bike because I had done so little exercise for so long.

Since I was also out of practice with commuter riding, I figured it wise to let rush hour traffic subside, since riding during peak hours in London is an emotional experience - I've never felt so scared and angry at the same time, than when trying to squeeze through gaps between vehicles at ten past eight on a Wednesday morning.

Why am I telling you all this? Well, because I'd been away for so long and was a little "out of practice" (as well as definitely below par fitness), I wasn't going to use a rush hour ride through Central London as my "welcome back".

For all of the reasons mentioned above, I felt it best to let the pandemonium die down a bit before I set off - but, even then, the journey ended up taking far longer than I had predicted, meaning I arrived at the surgery, sweaty and red-faced, at 10:15, clutching my semi-transparent bag - which somehow accentuated the brown and disgusting nature of the contents, whilst seeming to make my name stand out all the more clearly.
Expressing all of my available apologies, I placed the sample on the front desk, only for the jobsworth receptionist to refuse to take it because I was passed the deadline so “too late”.

It turns out that the samples are picked up by a delivery service to be taken to a central testing unit and they had already been and gone. The receptionist reminded me that the sign says that samples need to be with them by 10am. Helpful.

I figured they must have some kind of dedicated fridge or something that they could use in this kind of situation (they're doctors after all, "men of science" and all that) and then send it off on Monday.

Unfortunately this suggestion was also refused, most likely because it also conflicted with the wording on the sign and to bend in any way might render her jobsworth programming susceptible to further hacking, rulebreaking and, ultimately, descent into anarchy for us all.

To add additional levels of insult to my indignity, I even had to take the sample away with me, since she refused to even touch it or dispose of it for me.

I was so angry, the entire experience put me off doctors for well over a year, by which time my relationship with the water closet had deteriorated dramatically - yet still slowly enough for me to have forgotten how things used to be, therefore unable to measure how much they'd changed.


AUGUST 2012

In fact what spurred me into action to see a doc once more was something quite dramatic. I woke up one morning to find that there was a bloody discharge on my sheets and I had a nasty pain in my guts.

There had been some kind of pressure building inside me for the previous few days that had been causing me constipation, and overnight it had undergone some kind of change. The way I described it at the time was that it felt as though something had burst inside me.

I don't mean anything as dramatic as an internal organ, but as you can imagine, this strange feeling led me to feel it necessary to see someone to discuss my problem.

I was sharing a flat in south London by this point and, by chance, there was a doctors' surgery in the parade of shops that made up the ground floor of the block.

Considering I was in a bit of pain, I was pleased by this convenience and went downstairs to register with them in the hope that I might have my problem looked at straight away.

Alas this was not to be - red tape bureaucracy stated that I had to fill in The Form to register as a new patient.

I must then allow a full day to pass for them to process The Form and have my details successfully added to the computer before I would able to be seen by a doctor.

This isn't even my medical history don't forget, this is exactly the same info as the preliminary questionnaire given by a life insurance company to a new customer so they can start putting together their "likely time of death" model, based on the person's location, age, sex, marital status, employment status etc.

Nothing that can't be gleaned in a five minute interview.

Say the unthinkable happens, and The Form is lost before being added to the computer, the doctor might be faced with an unheard of situation where he meets you to discuss your symptoms without seeing your name on his screen.

He may even go on to diagnose your complaint on the spot.

This superdoc can do this despite "working blind", totally unable to make use of the information gathered on The Form to compare your house to his on Zoopla, chuckle to himself at what a whopper your "Units of Alcohol Per Week Estimate" lie is and pass judgement on your probable rate of hypochondria by your rundown of recent doctors’ visits.

I apologise for being facetious about GPs' use of info (I don't think they do any of those things by the way), but to illustrate my point, had they wanted to, they could have added me to the system very quickly and easily.

Alarm bells should have rung by the shoddy state of the place at that point - I don't think sending someone off in pain just because the rules state you have to put them on the computer is putting the patient at the heart of what they do.

And despite my discomfort, I didn't feel as though a trip to Accident & Emergency was warranted (my problem was neither of those things), and I've grown up understating my "level of suffering" as I've said before.

In retrospect perhaps it would have been the best thing I could have done, but again, there you go. And anyway, these guys get worse.

So I returned, after two uncomfortable days, arriving first thing to their walk-in clinic and realising that I’d been gazumped, German-tourist style, by a legion of mums and pushchairs who had all been waiting outside like it’s Black Friday or Brand New iPhone Day.

I took my queue ticket and settled my poor aching bum on the utilitarian metal waiting room furniture, where by chance I saw this poster:


Three weeks? I'd had the runs for something nearing 15 months by that point and the blood had just made its first appearance, so I figured the poster was worth mentioning to the doc when eventually my number was called - and this is when I met ”Doctor Awkward", the man who would sign my death warrant.

(Okay, bit dramatic, sorry - but had he acted in a more professional fashion, we may well have had a different outcome to events).

I explained my history of chronic diarrhoea, WC visits 6 times a day, 15 months blah blah and explained that I was worried because I now had rectal bleeding and new symptoms to boot.

There is no excuse for the way he reacted - the whole exchange was so awkward, for him to be weird about this kind of stuff when I'm feeling weird enough for the both of us is unforgivable. And he wasn't even a junior doctor who might have had an excuse.

He actually asked whether I wanted to be examined (Why else was I there? Did he provide some additional service I was unaware of?), took a brief look externally but didn't do anything internal and diagnosed that I had haemorrhoids (no wonder, after overusing my poor back passage for so long).

It was at this point he obviously concluded that the old ”Farmer Giles" were my major malfunction and the cause of the bleeding that I was complaining about.

To his credit, he did do a blood test, though what he tested for I've got no idea, because when I went back for the results, he told me they were “all normal”. Wahey, job well done! Case closed, we can all go home.

I tried to explain about the ‘nugget’ of pain deep inside me and I specifically asked him whether this and the blood was something that I should be concerned about, especially considering the poster in his waiting room.

His reply, given what we know now was astounding:

"DON'T WORRY, IF YOU HAD CANCER YOU WOULD KNOW ABOUT IT"

So, as has become something of a pattern, I was scuppered by my playing down my suffering, yet we live in a world of timewasting hypochondriacs who, if anything, do just the opposite.

He obviously didn't buy into anything I was saying, gave me pain relief and imodium (“sticking plaster” remedies at best), and made no attempts to find out the reasons why I’d had these symptoms for so long.

As you can imagine I didn't bother going back, but given his dismissal of the Big C as even a potential option, I felt no sense of urgency to find someone to take his place.

I had been losing weight for months, totally unintentionally, and the change was getting noticeable.

Even my mum, who started off complimenting my slimline new frame, was by then growing quite concerned when it continued in that direction with no conscious input from me.

The pain and discomfort also continued and changed from chronic diarrhoea to severe constipation and back again, and I was growing progressively more unwell, having to force myself out of the house to socialise and only giving into it and staying in when I felt particularly rough.

All in all, I was sleeping terribly and feeling generally like shit - yet all the while, still trying to be "normal", going to work like a good boy and refusing to take sick days.

JANUARY 2013

By January 2013, things had become even worse and I decided that something needed to be done, this time with a new practice, and asked Google which was the best one in the area.

The algorithm obviously worked because the surgery it picked really lived up to everything that was promised and I entered a period of having appointments every two weeks to try and diagnose the problem, with the doc growing increasingly frustrated that what he was coming up with wasn't working.

Once things had got so bad that I decided to bring him a photo of the toilet bowl sprayed with blood, he asked me if I wanted someone to take a look inside me, which they did by using a sigmoidoscopy camera at a hospital a week or two later. This was April 2013.

Even those chaps were pretty sure it was going to be nothing, given my age and level of fitness, but I'll never forget the change in atmosphere and the hush that descended in the room when they first saw the tumour on the screen, the man-in-charge telling me that there’s “something abnormal here” and then the sudden flurry of activity to start the referral process to a specialist once they’d recovered themselves from the surprise.

I guess that kind of discovery is far from an everyday occurrence for them.

So going from "if I had cancer I'd know about it", to suddenly having "surgery, chemotherapy and radiotherapy" all directed at me in the same breath was a bit overwhelming, as you can imagine.

It was at that point that everything kicked up several gears and I was suddenly "in the system", booked to see a surgeon within a week, and the gravity of my symptoms finally understood, thank God.

DOCTOR AWKWARD

Now, at this point, are you wondering whether I considered suing Doctor Awkward for malpractice? After all, his flippant dismissal of cancer meant I discounted it as an option, meaning I didn't do more to find the root cause of my symptoms in a more urgent fashion.

Hell yeah, I sued him! I wanted the book thrown at him - and not by some ambulance-chasing late-night cable TV lawyer types either, I was lucky enough to be able to instruct a proper City law firm who were happy to work on a no-win-no-fee basis.

They totally went to town, bringing in experts and throwing huge time and resources at my case, since they felt he had acted improperly and we had a strong chance of winning.

After many months, he was proved to be negligent, but unfortunately for us to win fat piles of cash in damages, the outcome would have needed to be very different from the one that actually came about.

It was agreed by their assembled panel of doctors that:

“Based on the recorded duration of symptoms, and in the absence of investigations to discount other causes such as irritable bowel syndrome (with or without rectal bleeding), this mandated a referral to a gastroenterologist or colorectal surgeon”.

Or, to put it a different way, the fact that I went on to be diagnosed by a different doctor meant only 5 months difference between potential and actual diagnoses, which wouldn't have made much difference considering the years it takes for tumours to develop.

So I never had my day in court, but had I done nothing and died of undiagnosed cancer, that would have made a difference - but I would have been dead, so got no pleasure or satisfaction from either a six figure payout or him being proved negligent.

But even without the extra cash, I'm still living the Freedom Philosophy lifestyle in Sinville - and he was proved to be in the wrong, which is an additional small win for me and (I hope), a wakeup call for him.

To close, some unsolicited advice from me to help you live longer:

  • For instance (assuming you're not one of the more egregious hypochondriac types), if you know something isn't right, don’t just put up with it, get it looked at ASAP.
  • Once you are in front of the docs, don’t let them fob you off with "sticking plasters", push to find the root cause of your issues and keep going back till you do.
  • If you are starting to move into the more “senior citizen” end of the population spectrum, don’t ignore any letters they send you about screening - get it done, the sooner you're diagnosed, the higher your chances of survival.
  • And finally, if you live in a country that doesn't chase you up for screening, be proactive and arrange it yourself for the same reasons as stated above.

Right - lecture over, thank you as ever for reading and keeping up with the Odyssey as I lay it down.

Thank you also for the lovely feedback I’ve received from my recent updates - keep ‘em coming, my head can always grow a little larger!

Catch up soon

Stage-4-in-Kampot

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