Not the best year of my life … continued

I woke up feeling better.

The pain in my upper left back seems to have subsided at last. I had assumed it was a muscle strain from playing softball but it was hanging around for a lot longer that it should, making me think it too was cancer.

I guess I’ll find out tomorrow.

I drove into work to get my laptop so I could work from home for the next couple of days. It was odd seeing the people there, buzzing around their normal days in their cancer-free bodies.

Everything looked slightly different, like I had a filter in front of my eyes. The world felt a bit further way, and the sounds echoed more, as if I’d moved into an extra dimension that only I knew about.

I was going to be in and out of work for the next couple of days, and would be quite distracted, so I sent a couple of emails to tell people I’d be available on and off until Wednesday. My boss smelled a rat and said as much in her reply, and so I decided to level with her so she could think about how it might impact my commitments over the following weeks.

I never had any problem changing nappies with my baby daughters, but it is not so easy to put a nappy on yourself.

This was not what I expected when getting an MRI.

I guess they cut these scenes from Grey’s Anatomy.

I waddled into the main room so they could attach a drip, my arms gripping the sagging nappy so it didn’t fall off, the gown flapping open down my back.

I was already becoming familiar with laying on my side with my knees against my chest to allow a stranger access to my backside. It’s surprising how quickly you adapt.

“I’m going to insert some gel up your rectum,” she said, “first there will be tube. It’s smaller than most deposits so it won’t hurt, but it will be a bit uncomfortable”

A bit?

Seriously, it was like she’d just taken a metal bar from the fridge and whacked it straight up there. Couldn’t they have left it on the radiator for 20 minutes before introducing it to the inside of my colon?

The gel was no better, and I was desperate to push against it, but I held on. My scrunched up face and whiny moans made it clear I wasn’t happy, and for a moment I forgot to be brave.

I then had to lie back, arms by my side, while they fitted a contraption over my abdomen, trapping my hands in place. I had a panic button in one hand, and I gripped the tube that would feed contrast fluid into my bloodstream in the other.

Then they wheeled me in to the MRI tube.

I expected it to be a claustrophobic dead end, but the far side is open and my head stuck out, meaning I could stare at the ceiling tiles while the machine did its thing

The main problem is not being able to scratch your nose or crick your neck. If only they gave you a moment or two break in the middle to have a quick flex, it really wouldn’t be that bad.

The machine makes all sort of beeps and bloops, whirrs and bangs, all of which sound like a fictional machine made for a B-movie by someone who hasn’t ever seen a machine before.

After forty minutes, I heard the door bang open and I was wheeled out. They unplugged me from the drip and I shuffled out, gel dripping down my legs. I got changed quickly and ran for the bus, desperate to get home for a cup of tea.

The grainy unimpressive images were showing on the hospital app immediately, and I scanned through them as I sat on the bus. As far as I can tell anything from an MRI image, the cancer didn’t appear to have spread, at least not within the pelvic area. Given the cost and complexity of the MRI machine, I expected something far better than these incomprehensible grainy smudges.

Later I looked again and again at the MRI images, not knowing what I was seeing, but feeling mildly jubilant that I was probably only dealing with a single tumour, not a body riddled with metastasised growths.

Funny how just having a single cancerous tumour was suddenly a cause for celebration.

I had to reason with myself, and remember that I don’t actually know how to read an MRI scan and would be unlikely to spot a tumour if it had flashing lights on it.

Also, the MRI focussed solely on the pelvic area, tomorrow’s CAT scan will look at the rest of me, and so although it may not have spread within my pelvis, it could have gone elsewhere, like to the upper left of my back, for example.

I need to keep calm … but today I feel more positive.

I notice I’m being more careful to be a good parent. Taking time with my kids, and consciously behaving a way I’d like to be remembered.

The following day

I was thinking how lucky I was to get the giardia infection. It’s what pushed me to go to the doctor, setting off the chain of tests that led to the diagnosis.

If I hadn’t have had that, perhaps I would have just put up with this mild unsettled feeling – not quite right, but not quite bad enough to trouble a medical professional – and then it would be there, inside me, undetected, growing and spreading. Or perhaps there would have been no symptoms at all, perhaps all the symptoms were linked only to the infection, and the cancer was busy burying its evil way into my bloodstream without me being able to detect it.

I got to the hospital and read my book (“The Chosen One” by Sam Bourne) while I waited to be called. I took it as a good sign that I could concentrate on reading again.

My number buzzed up on the screen and I went to the booth where I was told to undress and put on the now-familiar gown.

“You’re six hours without eating or drinking, aren’t you?”

“Er, no. I had a coffee”

“But you have to be en ayunas for this test. It’s with contrast …” (en ayunas is the Spanish phrase for fasting, or to be without food and water. I couldn’t think of a suitable English alternative, so will stick with en ayunas in these posts).

I had carefully checked on this point. The test said without contrast, and the instructions I had been given – and the appointment details on the hospital app – didn’t mention any special preparation.

“You’ve been misinformed,” she said, “it’s both with and without contrast”

(It wasn’t, I checked after)

“Well, I had a coffee,” I said

“When did you have a coffee?”

“Er … about 7, maybe?”

“I don’t know, you tell me”

“About 7”

(It had been about 8)

“And it was just a coffee? Nothing else?”

“Just a coffee”

(That bit was true)

She sighed with disappointment, and was clearly concerned about my behaviour, but seemed willing to go ahead with the test anyway. I got changed and followed her through to the main room where she put a needle in my arm – the third needle in the last five days – and set up yet another drip.

“That was the least painful so far, you win the prize!” I said, seeing if I could charm her after the coffee-gate incident. I needed her to say positive things about me afterwards, like how brave I’d been, and how I didn’t lose my sense of humour.

She smiled, but it was faint and non-committal. There was more work to do with this one

The CAT scan was fairly quick and painless. A quick up and down with the spinning x-rays with no contrast, then she turned on the drip and a hot sensation flooded my body – I could follow it around, first my arm then head, heart, arriving surprisingly quickly in my testicles … It was a curious sensation to feel the blood shooting around me, I had no idea it moved so quickly. There was a metallic taste in my mouth and I felt desperate to pee (both sensations she’d warned me about) … and then it was over.

“That wasn’t too bad,” I said

“No, the CAT is fairly straightforward”

“Better than yesterday, that’s for sure”

“Did you have the MRI?”

“Yes, and there the contrast goes in the back door. It was like they’d just got it straight out the freezer too”

She laughed: mission accomplished.

I was feeling sick and tired from having my veins pumped full of contrast, so I curled up on the sofa and closed my eyes to rest. My head ached too, but more from weariness than anything else.

I soon got bored of resting, and switched back on my laptop. Out of habit I clicked on the hospital website and logged in, and spotted the available document, just below yesterday’s MRI images.

I clicked, read it, then searched the internet to translate some of the terms to try to make sense of it – not only is it specific oncological vocabulary, but Spanish oncological vocabulary, so a challenge to understand without the internet helping out.

If I understood it correctly, it seems to be the best kind of cancer from my perspective, or the worst kind from the tumour’s perspective – a proper bona fide real-life actual cancer, but one that is the most common, least aggressive and least likely to have spread.

I noticed later that the document had disappeared from my online records – I guess they don’t like to communicate a positive cancer diagnosis via a website report. This sounds like good practice, although in my case it didn’t matter because the Doctor had already been clear about its malignancy, and so I had little doubt as to the result.

Wednesday 7th November (Day 6)

I am back at work but my head is foggy with exhaustion. This might be just because I got up at six for the first time in a week rather than a sign of anything more serious.

I just got the MRI and CAT scan results.

I was nervous opening the PDFs. Every time I get new information I realise just how on edge I am, which may explain my exhaustion – although I just ate spaghetti with olive oil and mushrooms, and found some hazelnut cake down the corridor – so am feeling more energetic, if a little fat and sick.

The results are positive, or negative, depending on how we’re using the words.

It’s positive news that it’s negative, at least if I have read the reports correctly (i.e. there is no metastasis!) The tumour is 40mm long, and is surrounded by swollen glands, that are suspicious given their location, but that’s all.

This is a much bigger tumour than I expected, I imagined it to be little more than a pimple.

According to the scans, the rest of me looks in pretty solid health. If it weren’t for the massive cancerous tumour up my arse, I’d be quite the specimen.

I got the complete diagnostic report later and read it more carefully. I may have been overly optimistic earlier, seeing the tumour as a pathetic weakling – a poor excuse for a cancerous growth – that we’d caught nice and early. A minor enemy that was about to be exterminated with minimal fuss.

It turns out that it’s not quite that simple.

It is stage 3 cancer, with the tumour having invaded the bowel wall and infected the region immediately adjacent to it, but no further evident metastasis.

So, not a death sentence, but not a walk in the park either.

I am now desperately impatient to get on with it … I can’t wait to get plugged in and get the clock ticking on this. At the moment the cancer is still in there and still progressing and we’re doing nothing to stop it.

I dropped out of my softball team until further notice.

They won’t miss me.

I started playing baseball in my late twenties, having fallen in love with the game on my then frequent trips to the US. I joined a team based in Croydon, assuming I’d be quite good, because I have good hand-eye coordination and had been fairly competent at rounders and softball when we played at school.

I wasn’t.

I could field quite well, and bat if the ball was gently lobbed to me, but I struggled to hit any proper fast pitches, I couldn’t throw the ball with any power, and I continually got caught out stealing bases if I managed to get on base at all.

I was young enough to get better, and the sport was unpopular enough in the UK that even an incompetent oaf like me could get in the team, albeit in the outfield, albeit in the B team. I gave it up when I moved to Brighton a couple of years later, switching back to tennis as my main sport, but now, approaching fifty, I had decided to give it another go.

I was awful.

I was thinner and fitter at 48 than I had been at 28, but I was also twenty years older and seriously out of practice. I couldn’t even see the ball, never mind catch it, but I persevered because playing softball was a key piece of the puzzle when assembling the new middle-aged version of me.

I was far too rubbish to get anywhere near the actual teams, but I enjoyed the training sessions and they were a nice group of friendly people, even with an awkward introvert like me.

But … I was going to have cancer treatment and an operation, so I wouldn’t be able to go, and so had to accept that fact and drop out.

This felt symbolically important. Joining the club had been a big step, expanding my life into new areas, pushing myself outside my comfort zone on many levels – not just the sport, but also the social side – and my walking away felt like my life was getting smaller again.

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.