Getting a cancer diagnosis

They say the day you get the diagnosis is the day the bottom falls out of your world, but that didn’t happen to me.

It didn’t feel like I’d fallen off a cliff edge, into a sickly battle for my very survival; it felt like I’d been handed a memo containing a useful piece of information.

This was probably more due to the skill of the doctor rather than my stoic emotional control. She was warm, but also professional and precise, so much so that I didn’t feel anything other than gratitude for her having found it, and curiosity about what happens next.

“We found a tumour,” she said, debriefing me on the colonoscopy results.

“A tumour?” I answered, impressively calm, “Do we know if it’s benign or malignant?” expecting her to say that she didn’t know and that they would need to do a biopsy.

“I’m pretty certain it’s malignant, although of course we’ll need to check”

I nodded as she explained the next two tests they needed to do, and then how my treatment protocol would be decided.

“We meet on Thursdays,” she explained, “we have a board of doctors who decide. It’s most likely to be radiotherapy at first, maybe some chemo, so we can shrink it before we attempt surgery”

I nodded and thought it all sounded like a bit of a bother, but nothing I couldn’t handle.

As we left the Doctor’s office I had said the word “cancer” out loud, just to see if it broke the spell, but I still felt calm. I joked that I had the bad luck to get cancer of the arse, not a cool manly cancer like cancer of the muscles, or cancer of the chiselled brow – no, I get a tumour up my rectum.

If there was one thing I was going to do during this whole cancer debacle, it was to try to handle it in the sort of way that people would talk about with awe afterwards. They’d say things like “he never lost his sense of humour” and perhaps even use the word “brave”, but I am getting ahead of myself.

It was an unexpected diagnosis.

When I first started getting stomach cramps and bowel problems, I searched the internet for the symptoms and all the medical websites offered similar diagnoses, either irritable bowel syndrome, or a giardia infection.

The giardia seemed most likely, it explained all my symptoms and having recently travelled to Ghana for work, it all added up.

Conveniently, the internet continued, giardia tends to clear up on its own after a few weeks and as this aligned perfectly with what I wanted to be true, I assumed it was giardia and went off on holiday. We were looking after a friend’s house outside Washington DC, so the last thing I wanted to be doing was faffing about with a whole load of medical tests, especially the kind that would be involved in checking my bowels for an infection.

This was in June, and by September my symptoms were getting worse, and so with my holiday safely completed, and despite my misgivings about being seen as weak and needy, I went to the doctor. I knew what was coming because I’d read about it online, so was unfazed by the series of deeply unpleasant tests they made me do. I left with five different poo containers, a bundle of instructions, and a sense of intrigue – and apprehension – about this odd new task I had to perform.

I had to travel to Istanbul the following week, so I put it off for a few days, not wanting to travel on a plane with a suitcase full of stool samples. I was back on Thursday, and so on Friday I nervously began the three-day process.

It turned out to be logistically more difficult than I had imagined, and it is not top of my list of life experiences, but as horrid as it was, I soon had it mastered and by Sunday I had a complete collection hidden in the back of the fridge.

I am lucky that I live near a hospital that turns results around quickly. I dropped the tests off on Monday morning, and the first was available on the website by Tuesday (I tested positive for traces of blood in my stool) and the rest by Wednesday (I tested negative for salmonella and various other intestinal infections, but positive for giardia, just as the guys on the internet had predicted)

A simple cure – four pills in a single day, and no alcohol for 48 hours.

My symptoms initially improved, but then over the next three weeks they returned. I had to repeat the tests anyway, just to check that the infection had gone and there was no more blood, so I assumed that maybe some particularly hardy giardia germs had survived and were again multiplying, or maybe I’d caught another infection at the same time, but one we hadn’t yet tested for.

The results came back just as swiftly, negative for giardia, but still positive for blood.

I knew what this meant: a colonoscopy.

I have always known that one day I would have to face a challenging medical situation. That’s the price of being a biological being. I am 48 as I write this, nearly 49, and I’ve never had any major medical problems and am only just embracing the idea that I am not really young anymore. The only time I’ve stayed overnight in a hospital was a few months ago for a deviated septum operation. This was useful practice because it involved a general anaesthetic and being in an operating theatre, all of which is quite scary the first time. It was good for my confidence to get that entry-level experience of surgery on a straightforward operation for a relatively trivial problem.

The idea of the colonoscopy didn’t bother me too much. I had had a stomach endoscopy many years earlier that was absolutely dreadful, but mainly because I’d bravely refused sedation – there’s that word “brave” again – which had probably definitely been a tactical error. It didn’t seem to impress anyone, and being awake so that I could see what was going on was less rewarding that you might think.

Worse, throughout the whole procedure, the nurse kept calling me Paul.

I wasn’t going to make that mistake again, I would gleefully submit to sedation the second it was offered.

The problem wasn’t the colonoscopy, it was the preparation for it: the three days before when I could barely eat.

There were two days of a low fibre diet, which wasn’t too bad, followed by a day of only clear liquids, which was less difficult than I expected, but the worst was yet to come: a series of awful laxative drinks that didn’t just drain me of my intestinal contents, but also my energy and most of my dignity.

By the time I arrived at the hospital, I was feeling like I was wobbling on a raft in the ocean, so sick and churning was my stomach. I was itching for it to start, just so I could go home and eat something.

They put a drip in my arm so they could sedate me. I couldn’t wait … please, just plug in the drugs and let’s crack on … but I had to wait nearly an hour before I clumsily shuffled into the room and lay on the bed, on my side, knees tucked up against my chest.

The sedation is not an anaesthetic because, they explained, with sedation you breathe on your own, whereas with the anaesthetic they need to intubate to keep you breathing. The longer you own a car, the more you understand mechanics as different things go wrong and need fixing. The same is true with the human body. A few more years of this and I reckon I could get a medical degree.

I don’t remember falling asleep, even though I was paying attention and trying to notice the sensation. I only remember waking up in the middle of the procedure and feeling a massive tube stuck in my bottom and hearing someone say “are you going to remove the polyps?”

I moved, trying to sit up a bit, to signal I was awake and they needed to whack the dial up on the drugs, I think someone said “he’s waking up” and then the next thing I remember I was in the recovery room, feeling bloated and sick.

The general anaesthetic experience felt quite different, and I would be hard pushed to say which of the two was my favourite.

After the sedation, I felt like time had passed and I had been asleep, and I recovered immediately. After the anaesthetic it felt like I had been switched off and on again, with no sensation of elapsed time. Recovery took much longer, not just the couple of dozy hours dotted with amnesia immediately after the operation, but also the two or three days of dimwitted stupidity that followed.

During those first couple of days after the anaesthetic, I felt like my intelligence had tumbled to just above average. I thought about suing the hospital, so at least if I was going to be stupid, I could be rich and stupid. Probably the ideal combination for human happiness.

I drowsily realised where I was, then woke up quickly, quicker than I expected, and then tried to sneakily expel the litres of air bulging in my bowels, hoping no one would notice. I was glad it was over, and eager to get up and get dressed.

We waited a while for the results, getting antsy about the time because we were running late to take our youngest daughter to the dentist. Paula tried to go to get the car so we could meet me out front to save a few minutes, but the nurse said she should wait to hear the prognosis directly from the Doctor.

“It must be serious” I said to her, only half joking.

It was.

I’d been right about the polyps, I hadn’t been dreaming. They had removed four of them, but they’d also found a cancerous tumour.

The next day …

The main thing is to establish if it has spread to anywhere else in the body. If it hasn’t, then I stand a pretty good chance of getting past this. If it has, then my odds drop significantly.

My Father died at 49 with a cancerous tumour, discovered at aged 48. In his case it had spread significantly by the time he was diagnosed – from the kidney to the lungs – and months before that April d-day when he got the diagnosis, he was visibly looking old and drawn.

At that time I was living away – teaching English in Spain – so I noticed differences in people when I came home. I saw him at Christmas, thin for the first time since I’d known him, his fat tummy all but disappeared. His face looked old and tired. That he was visibly turning into an old man didn’t surprise me, he’d always seemed old to me, not just because of the 25-year age difference, but because he was of a different generation. He had been 18 when The Beatles first topped the hit parade, but he had been looking the other way; the sixties passed him by. He was rooted in the fifties, a gentle Enid Blyton decade, that had made him a middle-class freemason and golf club conservative whereas I was defined by the eighties, The Young Ones and a love of nineties grunge and trip hop. It always felt like we were from different centuries, not just different generations.

He died slowly over the following year while I continued to teach English in Gijón, blithely assuming everything would turn out fine.

He was trying an experimental treatment that wasn’t aggressive enough for the advanced stage of his cancer. I once drove him to St.James’s Hospital and he complained that he didn’t know how much more he could take of the treatment and I remember feeling disappointed that he didn’t have more fight in him.

How self-righteously stupid of me!

I had no idea what he was going through on his chemotherapy cocktail, and I now wish I’d been more patient and understanding. When he later once said he was dying, I snapped at him that he wasn’t, making it clear that such talk was not to be tolerated, and he shut up. I now understand that he knew the treatment wasn’t really working and he wanted to talk about his death with someone but couldn’t because none of us would let him.

In my case, I do not look either thin or old, so there’s a good chance it’s not spread yet. I think we caught it fairly early, although I have some nagging doubts that I should have seen something sooner because the Doctor asked me a couple of times, “but didn’t you see the blood in your stools, or in the paper when you cleaned yourself?” I hadn’t – not even when preparing the samples for analysis, when I was much more up-close than usual. Her tone suggested some frustration that I hadn’t been more vigilant.

The next tests are tomorrow and Tuesday, so we will know very quickly the size of the problem. I know I am banking on it not having spread, I am fully expecting to recover from this, and am hoping that this will set up a lifetime of thorough checks which will avert any future cancer trying to get a hold on me.

I have thought about what might happen if it has spread. I have contemplated death, and although I find the idea sad and frustrating, I don’t feel fear – not yet anyway. This is probably because it isn’t for real, I am still assuming it’s a problem contained within a single tumour, but I wonder how I will cope if that’s not the case.

I feel nervous typing this now, I can feel my heart fluttering and my hands shaking a little.

I haven’t achieved anything like I wanted to with my life. I have moved on from wanting to be a rock star or a multi-billionaire, or the philanthropic owner of Leeds United, to just wanting to get my lifestyle right, but I haven’t even achieved that.

After a lifetime of socially awkward insecurities and feeling unworthy, I am just starting to enjoy being me. As well as being a fairly OK parent, I am running, cycling, playing tennis, and I have joined a softball team. I am writing what feels like a half-decent novel, and at work I am doing well and improving in my role – getting better, becoming more able – and I work with colleagues I like and who seem to like me.

If this is the beginning of the end – my death – then that’s quite annoying, but it’s better now than a few years ago when I was in the depths of a midlife depression and felt like I’d achieved nothing at all.

At least now I feel I have more perspective and some version of satisfaction.

If this is not death, then this is all a nuisance, but it could be worse. The timing isn’t so bad given I’m in limbo with my job and could probably work something out to give me time to focus on my recovery.

Hopefully – best case scenario – I can get this cancer beaten in the next few months and then slot seamlessly into my new role; a job I am seriously excited about. I am lucky that my organisation and boss are understanding and supportive.

This is best case scenario.

Worst case?

Do I need to go there yet?

Perhaps I need to prepare myself for the possibility.

The most heartbreaking aspect of it is to leave my beautiful daughters without their Father. My youngest is 12, nearly 13, and the eldest is 15. That’s way too young to lose a parent, especially for a teenage daughter to lose a Father.

Perhaps I don’t need to deal with this yet.

I think about other people who have had cancer that I know. There’s quite a long list and most of them survived and seem to be getting on with life as if nothing ever happened.

I can only think of two who didn’t make it.

Some of them adopt “cancer survivor” as part of who they are, but I really don’t want that. I want to feel young and fit and healthy, like I have been for most of my life. “Cancer survivor” isn’t part of who I want to be.

It’s later now. I am anxious, I can feel how unsettled I am.

I don’t know what to do with myself.

My stomach is hurting, it’s indigestion caused by the tension.

Not the best year of my life

This post is an excerpt from the diary I was keeping throughout my cancer treatment (called Not The Best Year of My Life) – if you’re interested you can buy copy here on Smashwords (preferred) or here on Amazon. I am giving any profits to the Macmillan Cancer Support charity.