Sunday, 1 April 2012

Rog T's Cancer Blog - If the Cancer doesn't get you, the stress will (and some important news)

For those of you who are regular readers and have read the previous posts, 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 49 years old and I recently 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. 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?

My accountant Mike is a lovely bloke. He was originally a friend of my older sister Val. When my studio business started making money, we needed an accountant to sort us out, and he seemed the natural choice. He's been looking after the books now for more years than I can remember. He was originally based in North Finchley, but moved to Dorset a few years ago, when his children left school. He wanted to relax and chill out. We mostly communicate by email now, PAYE and annual returns. On Friday, I got a phonecall out of the blue. Mike had heard about my Prostate cancer and wanted to give me some support (he's not an avid reader of this blog). The reason? Mike has a far more advanced form of the disease. Wheras I have a low Gleason score 3+3, Mike is on 4+5. In short, if the number 9 bus doesn't kill him, the cancer probably will.

We chatted for the best part of half an hour. There is a big difference between the situation I find myself in and Mike's. Why is this? It is because I have received a very early detection. I can be monitored, I have changed my lifestyle and I have a range of choices. Mike is on hormone therapy. His disease has reached a stage where he's managing the disease rather than trying to get rid of it. For both of us, the ideal solution is a medical advance. Mike is a bright guy and has read all about the subject. He needs the magic bullet to kill his cancer far more urgently than myself.  For me, treatments are things I can put off, worry about when they become necessary. For Mike, the choice is simple go along with it or face a shortened life. The hormone treatment is used to suppress testosterone production, which fuels growth of the cancer. The worst side effects of this are fatigue and loss of sexual appetite. Still when you have a family, these are a price worth paying.

Mike is a naturally positive bloke. He is coping OK and is doing what he can to ensure that he hangs around as long as possible. It is interesting, the prostate cancer club is one where you learn a whole new language. The first question is your Gleason Scale score. at 3+3, I'm a novice, but no one wants to be a master in this art. Then there is the discussion about biopsys. My brother in Law, Tim is a doctor. he practised medicine in the USA. I discussed the truama of having a Prostate biopsy and he was horrified that the NHS don't sedate people for the procedure. He felt it amounted to cruelty. I also recently had a colonoscopy. This was done privately and I was sedated. The procedure was completely pain free and untraumatic. I will insist on this for the Prostate biopsy I'm having in November. Cancer is bad enough, without the stress of such a horrible, violating procedure to endure. If I can a pass one thing on, it is the fact that you can make the process less unpleasant and a clinician should make this a priority. I suspect many men don't go back for a follow up biopsy, purely because it is so horrible. Mike hadn't realised that sedation was an option, he will also be insisting next time.

Having had a good chat with Mike, I then felt the need to have a couple of beers, on my way home from the Big Smoke launch. I have recently joined the Mill Hill Services Club and decided to take advantage of my membership. After a couple of beers, I bumped into another old friend - Junior the Blasphemer. Junior used to work for my Dad, in the good old days of Mac Metals. He is a larger than life Maltese builder, who has done well for himself, wheeling and dealing. Like me, he is also Mill Hill through and through, as are his large family. Any conversation with Junior is a joy.  Like me, he's a musician and loves to regale everyone with stories of how his songs have been stolen and used in Guinness commercials etc. He is a great songwriter, so I do believe him. I asked how the rest of the family were. This was when I got a shock. His elder brother also has Prostate cancer. like Mike, he found out at a stage when it was past easy treatment. He's just had an operation and is recovering. Wheras Junior the Blasphemer is a loud and very extravert character, his brother is quieter, more considered and introvert. Like Mike, he's lucky to have a great family to support him, but it seems he's struggling. Contemplating ones mortality is not great.

Which brings me to the crux of the matter. What is the big difference between Mike, Junior's brother and myself? Well I have choices and I have time to make them. They don't in the same way. Why? Because I had a PSA test from the doctor at the age of 49, which flagged the disease up at an early stage. If you are a male and you are over 45, then you really should seriously consider asking your doctor for a PSA test. I had no symptoms and was shocked to find out that I had a problem. Whilst I suspect that most of the people who read these cancer blogs are fellow sufferers, please impress upon your friends who are not the fact that they should consider getting the test. Both Mike and Juniors brother are under 60. Chances are that if they'd had the test at my age, they may have been able to go down a far less painful path with their disease.

Today I published a couple of April Fool spoof blogs. I have to be honest and say that I'd not really wanted to do this. I've not been feeling particularly cheerful since Friday. My wife and eldest daughter are in Sheffield for a swimming gala, so I've had no one to talk my feelings through with. All of my ten mistresses have also turned their mobile phones off (in joke there)! Last night, I took middle daughter out for fish & chips, watched Black Hawk Down and had an early, sober night. I pondered how hard it must be for people living alone, without a family to support them. I've always lived in a large family environment. I find loneliness and isolation difficult to deal with at the best of times. Men are generally extremely bad at dealing with their feelings and talking about their problems. I cannot imagine how much harder this must be if you have cancer and you are on your own.

I'm in the process of a massive business project at the moment,which is taking all my spare time, but in May when that is finished, I am seriously considering doing two things. The huge success of the film A Tale of Two Barnets has convinced me that there is a massive need for small budget, local community films. As even the previous Leader of Barnet Council, Lynne Hillan has been laid low by cancer, I believe that there is a need to make a film tackling the issues which cancer raises. We need to explore the effects it has and how people in Barnet are coping or not coping. I want to make a film, which will hopefully help and inspire everyone affected by Cancer in Barnet and to get people who aren't affected to stay healthy, get screened and know where to go to find out how to cope.

When Charles Honderick and myself made A Tale... we did it on fresh air and no budget. We needed to know what was really required to do such an undertaking. It was really an experiment to see if a local film could be made, if it could work in a cinema and if people would respond. We also needed to know how much it would cost. Now we know. I estimate that to make the film which I want to make about Cancer, we'd need a budget of £8-10,000. This would mean that Charles could be properly renumarated for his time, we could get proper post production grading performed and that we could sort out the other minor technical issues which we couldn't address with the time and budget of A Tale....

So if you think that this is a project you would like to take part in, either as a suffered, a carer, a family member or anyone else affected by cancer let me know. Even more importantly, if you have some spare cash, which you would like to invest in a film, with virtually zero chance of ever seeing a return on, please email using the link in the top right hand corner of the this blog.

Which brings me on to the second thing I'd like to do. The Cancer blog series on The Barnet Eye has been extremely well read and generated many expressions of interest from readers.  Now, whilst many of you may have read my April fool spoof story about buying the Barnet Times, there is a grain of truth in the story. No, I'm not buying the Barnet Times. I don't know any rich Irish racehorse owners who have a couple of million quid to invest. What I do know is that The Barnet Eye has been an incredibly successful blog. I have been faced with a choice. What can I do with it next. Approx 10% of the content currently is guest blogs. These generate approx 30% of the hits. We get approx 1,000 hits a day purely from people who want to read about Barnet. I believe that there is a huge interest in hyperlocal news and local interest stories. I believe that issues of healthcare and other similar things are neglected in the local press. I believe carers, cancer suffers and other people struggling to manage with debilitating illnesses need a voice. I believe that our local sports teams need a voice. Many are struggling to stay afloat, whilst other people who may wish to join them don't even know they exist.

So what I propose to do is this. I want to expand the Barnet Eye from just being my blog, to being a community website, which is in effect self administering. I want sections for Health, local sport, community news and announcements and anything else which people want covering. I want our existing "Guest bloggers" to become fully fledged local journalists working for their communities, with their own section on the site. So if you wish to get involved, now is the time to start by sending me a guest blog. Just to prove I'm not bullsh*tting about this, I've spent a few quid on a website registration for five years - although there is nothing on it now and won't be until the summer -

From the end of May I will commence working on a new design and putting the site together.

Whilst this may seem an oddly low key way to launch two such important new ventures, there is method in the madness. Many aspects of both these projects are still just in the early stages of development. I just wanted to share them with you in a fairly quiet way.

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