Ok, Well Hi!
So as you may have guessed – I have cancer. I was diagnosed early may after a long drawn out period of illness and doctors getting it wrong – as it actually started way back in January.
The year started with me making some ambitious plans for my running. I was to cover 1000 miles over the course of the year, beat my time for the Yorkshire Marathon and finally get a six pack among other things.
Instead, at some point in January I started to feel ill and over the course of the next few months seemed to go through every ailment known to man with no obvious cause for any of it. The one symptom that never really went away throughout though, was the pain.
It started down in my guts, an achy annoyance which didn’t help my running. Then spread around to my back. The docs believed the gut pain was likely adhesions caused by an operation I had around 13 years ago, and the back pain caused by me carrying myself differently with the gut pain.
They ( eventually ) referred me for a colonoscopy – joy of joys – and the ball started rolling and progressing, unfortunately as did my symptoms.
My pain worsened and was only eased by pain killers not so much removed, repeated visits to the docs were not helping it was a case of “just wait for the referral”.
One lovely morning on Friday 27th April, I went to use the loo and was more than a little scared because what came out looked like pure blood. Not watered down, thick, pure blood. I went straight back into the docs that day proudly carrying a “ok, now you have to do something” sample. They tested it – definitely blood. But again was told to wait until the colonoscopy.
I went home and peed blood for the next few days, then on Monday the 30th for about 30 seconds… I couldn’t. Nothing happened and then like a dam busting under pressure a load of blood clots shot out followed by the now familiar stream of blood. That was the final straw, and I got myself down to A&E that night.
I cannot thank the initial doctor here enough, not content with a 10 minute A&E consultation she upset the patient after me and investigated. Actually took the time to look into what was going on and was the first person to say to us… ” I think this could be something we need to worry about “. After a few hours regurgitating my tale to several docs I was finally admitted to a ward and setup with a CT scan the following day.
It seemed like a never ending wait. Tube hanging out my arm, a bag of jelly babies to keep me company and ( finally ) some decent pain control. When the doc finally came back to me with the scan result words were chosen very carefully. They could see a mass, quite a large one, in my bladder and there was a possibility it had spread to my bones.
Which basically meant the previous docs were looking in entirely the wrong bit!
They needed to do some more tests, get a biopsy. Unfortunately there is only really one way to get a tissue sample from your bladder, and that’s to go in via the exit pipes. Not a pleasant experience but I insisted they knocked me out for the process ( why would that even be a choice lol ). Along with the sample they needed they were also to snoop around with a camera a little, and insert a stent into my left kidney. The mass was apparently blocking my right kidney rendering it useless, so this was a precaution to make sure the left didn’t get blocked also.
After a day or so to recover with the biggest catheter tube I have ever seen ( eye watering to remove! ), they were again very careful and vague with wording though on this occasion joined by a Macmillan nurse. They sent me home with possibilities and to wait for full results of the biopsy tests.
It wasn’t to long afterwards we got the call, I had a provisional appointment on the Wednesday to go in, but received a call on Monday from the doctor. Very vague again in his wording he simply told me ( with no further explanation ) ” It originated in the bladder and we need to start treatment ASAP “. I had an appointment back at the hospital with an oncologist very next day.
It was almost as though the doc didn’t want to tell me the news himself, avoiding certain words and staying very vague. Probably my only criticism of this whole process so far as it just left us open to speculation.
Dr Belvedere however, was fantastic. We met her on the Tuesday and she just laid it all out bare for us. A very emotional meeting. She hesitantly asked us if we wanted to talk about life expectancy, of course I just wanted to know. 12 month’s without treatment, and if I was to have chemo then this would only extend by a few months. Cure was not an option, extending life was the goal.
This was the point my wife broke down, really hard pill to swallow. We were kind of expecting it to be bad news, but not quite that bad. The rest of this meeting is hazy, I remember hugging Kari in the multi-story car park saying it’ll be ok while she sobbed. She replied to say only that it would never be ok again.
Not sure how long we stood there letting it all sink in, suddenly at home again hugging more with more sobbing. Thoughts of Freya flitting in, nothing would make sense.
It’s difficult to say how you feel with that news, I think I went kind of numb. I would get upset again whenever I broke the news to the next relative. Then try block it out and distract myself. How do you come to terms with knowing you are going to die. Knowing I will never see my daughter grow up. I will never see my 40th Birthday. This Christmas is likely the last I will have.
Nothing will ever be the same again. Advanced bladder cancer, which has spread to the pelvic bones and the spine. Well Fuck.