How It All Began

I have noticed in my own grim perusal of cancer blogs that what I always want to start with is the Story Of How It All Began. I guess because we all wonder whether it could be us, whether we are missing something our body is trying to tell us, and in my case just to compare notes. So here’s my story. Apologies for the bottom and poo references. I guess it’s kind of inevitable.

I think I’ve had a bit of a dodgy bott since my early twenties. I like to think it stems back to some particularly virulent bugs caught in India when I worked and travelled there. But really, even before that there were the signs of something like irritable bowel syndrome, I just called it Keble gut-rot, since that is what all my other friends seemed to have after eating college food.

I got to 29 before doing anything about it. I stopped working at No 10, moved to Cambridge and with all the time I now had I vowed to sort out some long-standing health issues. So,  smear tests (and removal of some of those little polyp-y things in my cervix), and some tests at the doctors when I told them about blood in my poo. I can’t quite remember how but after this I also ended up at Addenbrookes having a camera up my bottom. Sadly only half way up – a sigmoidoscopy. If it had gone the whole way up (a colonoscopy) then they might have seen and been able to chop out the little polyps which, over the next 4 years, grew into my massive Nuisance. Anyways, they didn’t spot anything and just told me to eat more fibre.

So, in those intervening 5 years I relaxed about my weird poo, and got preoccupied with having twins and then work. But last June or so I started to feel weird. I got terrible migraines for the first time in my life. I was so much more tired than I could remember having been. Usually I could go into work after an overnight flight, but that didn’t seem possible anymore. I found myself snoozing on Saturdays, my usual energy gone, though I put this down to getting old (by the way, there was none of that weight loss you hear about with cancer – I barely lost 3 kilos and that was with going on a HUGE and boring diet over the same 4 months). But then in September I just stopped poo-ing. First time for about 10 days. And laxatives just put me in bed vomiting and heaving with pain for 2 days. Visit 1 to Doctor. She is reassured by the colonoscopy I stupidly tell her I had 5 years ago (because I don’t know that I haven’t had one). Apparently these are valid for 5 years so she won’t refer me for another one. She inspects me and gives me stool softener. This works for about 5 days and then my bowel just seems to close over like a massive stone had rolled into its’ path – that would be the tumour, I later find. I get more stool softener from the Docs. It doesn’t work.

And at this crucial moment I go on a work trip to California and Chicago. Can’t poo, can’t eat. But otherwise not ILL, in fact feeling pretty awesome. Running on the beach at San Diego, driving a combine harvester in Decateur (yep, my job was fun as well as hard work). But then I got to Chicago airport and just faded. The flight home was me alternately vomiting and restlessly sleeping with a fever. I don’t think I was a popular passenger, but then again the air hostesses on United weren’t exactly Florence Nightingale. I got in my taxi at Heathrow and went straight to A&E in Cambridge. I arrived at 7am and by 7pm I was in emergency surgery. At some point on that dreadful afternoon the bowel surgeon (who is a hero in this story, believe me) came to see me and told me the CT scan had showed I had a blockage in my bowel and shadows on my liver. So, he was very sorry to say, he suspected the worst: cancer. He would know after the op. I woke up about midnight to find Billy next to my bed saying yes, it was cancer. I can only begin to imagine how bad all this was for him. But at that stage I was morphined-up and strangely, crazily ecstatic to be alive and not to have a colostomy bag (if I had had one of those, my blog would have featured poo more heavily, so we should all be grateful).

Then, out of hospital. 4 weeks of getting used to this new normal. A CT scan, an MRI, a PET. All confirm I have Stage 4 cancer – i.e. it started in my bowel but has now spread or metastasised to my liver, but no further. We discover more disease in the liver than we hoped. No immediate curative operation. And so begins the chemo, the search for physicians I like and trust, Billy’s role as Chief Scientific Officer, eventually my liver op in Houston in March, more chemo, and in December the news the Nuisance was back, had spread to my bones, and was now incurable.But you know all that.