Prostate Cancer Notes Chapter 2

One of the aspects of being a patient is the sharp contrast between periods of busy-ness and not. There are times when you're being inundated with appointments, correspondence, and medications; there are times when you seem to be just waiting for the next event. Now it's one of those intermediate days. I've had the first bone scan: the one where they inject you with the radioactive element technetium, which for a couple of hours frows around your blood looking for bone tissue, then take an image of it. The half-life of technetium is about six hours and your kidneys are very keen to get rid of it, so after a few days the residuum is vanishingly small. I've also had the second bone scan ('DEXA') where they take an X-ray image of the pelvis and femur to estimate bone density. All that is to ensure one is fit to receive the radiotherapy in due course. (What to do if the answer is no, I am not quite sure: "Were taking an X-ray to see if you're fit to be treated with X-rays".)

Last week I had a scary moment. Worried about the pee smelling a bit like month-old forgotten cabbage in the fridge, I called [first port of call] MacMillan nurse. She recommended getting a sample checked at the GP surgery. That done, I was prescribed antibiotics. Within a couple of hours of taking the first tablet I appeared to be peeing blood. Mustn't get despondent, it's not actually much blood, I was told; tablets will soon clear it up. They did. Another couple of hours and problem had disappeared. Earlier this week I should have had TURP surgery (of which more later). Arrived at hospital, urine sample taken, got gowned up, had the surgeon's cautionary talk for consent form. Minutes passed. Then surgeon re-appeared to say that today's events are postponed. I have an infection courtesy of the Proteus Mirabilis bacterium. (The only bacterium to have a Roman emperor named after it.) [Long-story-short]– Surgery postponed by only four days while more antibiotics are deployed. These things happen, dear FM, do not let them make you despondent!

Another variable is how upbeat or downbeat the various doctors are. Some, like the surgeon giving the pre-op talk, need to talk about the worst case scenario. Others are in the middle: there was the specialist confirming my diagnosis and presenting options. "The mortality rate in ten years is just about the same for either choice…". Finally there are the upbeat ones. The specialist who saw me last week was very upbeat indeed: (let's just call him Doctor Chirpy); he had a happy attitude and was very encouraging, promising that "life like a youg stallion would soon be restored". I honestly think that the same technique should be applied to doctors' prognoses as we were taught to apply to observations in school science experiments. That is, discard the very top and bottom ones and take an average of all the others.

As I write this I'm due to go in for the rescheduled TURP surgery tomorrow. Yes of course I'm worried; but I refuse to be despondent. As I told Dr Chirpy, I dispel any pessimism by thinking about my granddaughter who's just coming up to nine years old. I want to get up and dance at her wedding, whenever in the future that might be.

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.