Tuesday, 13 November 2012

Rog T's Cancer Blog - The smell of death is in my nostrils

For those of you who are regular readers and have read the previous posts on Cancer, you can skip this first paragraph.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life.  For those of you who aren't, here's a quick summary. I'm 50 years old and I last year had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gives me a 3+3 on the Gleason scale. I'm now on a program of active monitoring.  In early February, I got the results of the latest PSA test - down to 3.5 and an MRI scan which found absolutely nothing. My latest PSA test in August was not quite so promising, back up to 3.9, in other words the downward trend has stopped. I've no symptoms and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture?

Today was the day that all of us blessed with the gift of cancer view with trepidation. The visit to the specialist. As I knew my PSA levels had elevated slightly, it was something I knew was not going to bring the best news in the world. The consultant said "your PSA is bouncing around, we'll get you back in January for an MRI and a follow up biopsy". He asked if I had anything to say. I replied "Yes, if you are doing a biopsy, I want to be sedated". He gave me a disdainful look as if to say "that costs money, what sort of a wuss are you?". I don't care, the last one was horrible. I can stand the blood in the urine, faeces and sperm, but I really can do withour the indignity and unpleasantness of the biposy. It is far from the worst pain I've had, but as experiences go, it was pretty disturbing. I have a pretty high pain threshold, but I really cannot be bothered with the attendant indignity. I've long since stopped caring if anyone thinks I am a wuss, give me the drugs and I'll be fine.

So that is that. Sometime in February or March, I'll get some more news. Good or bad I don't know, so I won't worry too much. I have no symptoms and I feel pretty good. I have pretty much stuck to the good diet so I am doing what I can. I am in a positive frame of mind generally.

Having said that I had a very unpleasant brush with the smell of death today. Literally. When I returned to work, I saw a young artist who was talking to us about renting a studio for painting. We have the possibility of reusing our old temporary portacabin office so the plan was that at 2pm I'd show it to her. Where my studios are, my brother also runs a business. His hobby is despatching wildlife to the heavens with his shotgun. I am a man of peace and I don't like murdering wildlife, but he does. Each to his own. I got the key for the old portacabin and beckoned the young lady to enter. As I opened the door, two surprises greeted me. The first was that there was a dog locked in the office. It belongs to a friend of my brothers, and he'd left it there as he was doing some building work on site. He rescued the dog from a group of Irish travellers, who had been mistreating it. It looks exactly how you'd imagine a dog rescued from a group of travellers to look. The other thing which shocked me was the smell. It was terrible. I am not good with smells. The artist looked at me, thinking it must be the dog, she asked "does the dog come with the office?" No I replied. I then noticed the source of the smell. There were approximately a dozen pheasants hanging up on the wall of the office, all extremely dead. For some reason I've never been able to fathom such meat is meant to taste better when it is "gamey".

For a moment, it could have been a second, it could have been ten minutes, I was transported to Hell. I lost all sense of being where I was in Mill Hill. In the bible, Hell is a place of fire and brimstone, I now know it is nothing of the sort. It is a cold, damp, dingy portacabin in Mill Hill on a cold and wet Monday afternoon in November, with your nostrils infused with the smell of death and an attractive young lady looking at you with horror, scorn and pity in equal measures. I lamely said "Oh, er these are my brothers, he likes to shoot things". She made her excuses and left.

You can really have no idea what effect it had on me. I had intended to write a blog on the policies of Robert Rams and the closure of Friern Barnet library. I just sat in my nice office in my nice new building, trying to pretend that I hadn't seen and smelled the sights of the portacabin. A friend who has been talking to me about having a party in one of our studio spaces then spoke to me on the phone. She has been struggling to think of a theme for the party. "What about a Burlesque theme?". This snapped me out of my maudling, unfocussed mini depression. I got to thinking of the book "50 shades of grey". I've not read it, but it is far and away the best selling book of the moment.

I read the five sentences that I'd written about Friern and Robert Rams. I suddenly realised that I had actually lost the will to live as I read them. I then remembered that a friend had sent me a jokey email. The purpose of the blog was to promote the Will Self event at the Friern Peoples library and to contrast the sterile vacuum of Rams Policies with the vibrant,exciting hub which the Peoples library has become. I thought of the burlesque party, then of "50 Shades of Grey", a book which has sold gazillions of copies, but will most likely be completely forgotten in a couple of years (rather like Rams career when he finally falls into the dustbin of fate). My friends email was entitled "50 sheds of grey" and was a series of amusing innuendos based on the style of "50 shades..."

So the old blog hit the dustbin button and a whole new blog sprung into life. It was a metaphor for what has happened at Friern Library. The grey sad people who were supposed to look after the library for us, slowly strangled it and killed it. It died, but where it was supposed to be a fantastic new library has sprung up. One which gets national press coverage and authors of the stature of Will Self visiting.

Which brings us back to my current predicament. I have no intention of letting this disease do anything other than focus my mind and make me see the good things for what they are and to fight for them. We are on a journey. We should all be mindful that every journey has a start a middle and an end. On that journey, we have no real control over the start or end point and often very little over the bit in the middle. Sometimes we can't choose who we sit next to or who is getting on or off at the next station. But we can choose what we eat, what we drink, what music is on lifes iPOD and we can try and if we are clever we try and get seats next to people we like. And we can choose the books we want to read on the journey, be they 12th Night, 50 Shades of Grey or Judge Dredd : The Cursed Earth Chronicles. As I saw those pheasants hanging, smelling of death, I thought what is the point in all of this, why not just lie down and never get up again. Of course dying is never that simple, but I had a very black moment. How do you wash that smell away? The answer of course is with something that smells sweeter. How do you remove that image of hell from your psyche? With an image that makes you feel happy. How do you banish the dark thoughts? By looking to the future and the things which make life worth living for.

As days go, today was a bit of a rough old day for me. I am very glad to have got it out of the way. When our friends and loved ones ask us how we are, us English always say "It was alright, I'm fine" and yes, it is alright and I'm fine. It's just that for a couple of hours, until I got it out of my system, it wasn't alright and I wasn't fine at all. So if you are reading this and someone you love and care about is going through something which is difficult and they say "It's alright, I'm fine", please don't just simply say "that's great" and move on. I'm not 100% sure on what you should say, but maybe you should say something like this "that's great, but is there anything that has been worrying you, even if it's a silly thing, anything at all". You see the thing that really worried me was that a saw a dozen dead pheasants hanging up, mutilated by shot, stinking to high heaven an hour after I was booked in for a cancer bioposy. It reminded me of my own mortality. If that isn't stupid, what is, but it scared the hell out of me for a while. 

I'd recommend anyone who is having issues such as mine to write a blog about it. If you don't want anyone to know, use an anonymous name. I find it helps. I am in the lucky position that to all intents and purposes, there is nothing physically wrong with me, but the mental effects of cancer are, for most people I've met, a challenge. Like any challenge, they are best dealt with using teamwork and support. My challenges are minor compared to many. Communicating to your team what you really need is the only way to ensure that your team are really behind you and giving you all the support you need. Hiding your feelings and fears from them, means they can't really do the job of being your team properly.


Dave-ros said...

You're quite right about writing a blog -- I myself am doing that as part of my recovery from depression (I won't pimp it here, though, I don't want this to seem like free advertising!). Glad you escaped your low mood: sometimes it really is other people we need to help us, and even though we think we're just annoying them with our problems, they're the ones who help us when we can't help ourselves...

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Elinor Phillips said...

I'm sorry that you have to be in that situation and I deeply understand why you wanted to be sedated during the procedure. Continue on your diet, its good. cancer alternative treatment centers advice that to their patients too.