Prostate Cancer notes Chapter 1

I'm going for the Open Patient policy. That is, I talk about it, as necessary. I talk if talking is going to help. That's help as in to help me, or to help someone else, be that someone else a family member, a friend, or just my Fellow Man. (Should I have said “Just” there?) Hey! The Fellowship of Man is important; let's not downplay it. Fellow men, I address you all: Dear FM!…. We know what we're made of: slugs and snails and puppy-dogs' tails as the old nursery rhyme goes; so yes – talking about it is sometimes going to involve some messy stuff.

I promise, as far as reasonably possible, to use gentle euphemisms when the details get onto the very messy stuff, the very-very messy, inconvenient and sometimes agonisingly painful stuff. This won't suit every reader nor every sub-topic, so remember, whatever device you're reading this on, it has a [back] [cancel] [get-outa-here] button and I shan't mind if you feel the need to use it.

Once I started telling people about it, most reactions were very helpful and reassuring. “My dad had that and lived another x years” that sort of thing. There was even the friend who said “Everybody's had that; I've got a hormone implant, here [points to chest] – like a chicken.” What varied a lot from one also-patient to another was the story about how they first came to get tested and diagnosed. It seemed that everybody's story was different; so for what it's worth, here's mine.

I was noticing that I woke up in the night a lot wanting to pee, but not a lot was forthcoming. I've woken up for the sake of 200 ml. What's that about? So I went to see my doctor and told him adding “Do you think my prostate needs looking at?” Yes, he said. First we need to do some blood and urine tests. More or less from that instant, it seemed that the combined teams of urology and oncology at the renowned Cambridge hospital of Addenbrookes had been deployed on my behalf. Appointments followed each other with such bewildering speed that sometimes it took a look-up on the Google calendar to remind me what I was there for!

So far, most of my appointments have been diagnostic or consultation rather than treatment, so it's still early days. Meanwhile, dear FM, some good news and bad to share. Good: once you're a cancer patient, you're top priority; you get the next available appointment for any treatment. My first pre-consultation appointment was for an MRI scan. That was a day to remember. The priority queueing system meant I got a can-you-come-in-tomorrow call for 8:30 for a day when I had a family funeral to go to in the afternoon. The MRI scan was fine. You just wear ear defenders and lie down in the mouth of what looks like a huge washing machine for half an hour while it makes loud rhythmic noises. I think I fell asleep. The hardest part of the day was circulating around family members all asking “How are you?” and having to say fine because nothing was known yet.

Four days later I had my first urology consultation. Urologist announced that the MRI scan had showed something important, and I needed an ultrasound scan on the bladder –like immediately. Turns out my prostate was so enlarged that it was restricting urine flow so much that I had a serious peeing deficit. “You're not going home tonight,” he said, “We need to fix you up with a catheter so all this can drain off.” “But at least it's probably not cancer; we can fix that with simple surgery in a few weeks.” They reckon that the catheter drained off 1.5 litres that was causing back-up pressure that could have had me collapse with catastrophic kidney failure at any moment. I reckon it was nearer three litres, based on my body weight before and after. (Bad news, dear FM): sometimes even the top experts miss something. A few days of thinking all was well ended when closer study of the MRI showed some lesions; and soon it was time for a biopsy.

The biopsy: well, yes. Now I'm an East Anglian and we just love the understatement. Folk from that little bum-shaped area of eastern England believe that if you really want to make your point in a discussion, the quietly spoken understatement beats any amount of exaggerated shouting. Bearing that in mind, the patient info leaflet on prostate biopsies, in particular the line that reads “You may experience some discomfort” was probaby written by the extremist jihadi wing of the understatement mafia. No FM, you will not “experience some discomfort”. This procedure knocks any mediæval torture you may have come across in Horrible Histories into a cocked hat. I endured it by reminding myself that (at this stage anyway) it was probably preferable to a grisly death; by thinking of all that moral high ground I had scored by signing the bit on the consent form that says yes you can take “a few extra samples” for research; but mostly by grabbing a mouthful of the pillow I was on and biting as hard as I could. “You may need to sit and rest for a few minutes afterwards” says the leaflet. I didn't. I needed to lie on a recovery bed for an hourand a half sipping water and nibbling biscuits until I was fit for anything.

A few more days of waiting brought the results. Cancer confirmed; treatment described (hormone regulators to befollowed by radiotherapy after a few months); a MacMillan nurse and a Navigtor allocated. (That's an advisor, who is a great help.) Oh yes, and a huge pile of printed paper (leaflets, letters, books) to take home and read.

So that's the beginning of the journey. The battle. And the battle against cancer is about normal life carrying on despite it.