Thursday, 31 March 2011

It's been a few weeks now since I posted a blog, I'd almost forgotten about it. My daughter Sasha prompted me, when she phoned me last night and said,” Don’t take this the wrong way Dad, but when I thought you were dying, things were much nicer between us, and we used to call each other a lot!" Oooops, I thought, she's got a point! Must try and get hold of Chantal and Lucienne before I go away too. Maria and Sofia are always on Facebook, so I feel that we talk every day, but in reality, we never talk, but we are in communication I guess!

To be fair, I have been on the phone a lot, and that's why I may be a little guilty of ignoring the kids. I'm registered as a person who doesn't mind being called by newly diagnosed people on the National Helpline, and also get a few calls a week from people on the Prostate Cancer forum, who are new to the disease and just want information really. I was in that position a year ago, and I know how bad it feels, not having anyone to talk to at such a scary time. I heard back from Tom in Harrogate today, after he had been given the 'all contained' result from his MRI scan. He sounded so pleased and I was delighted for him.

I am flat out doing Uni work and well on target for all my deadlines now, so there's a big gasp of relief!!!

My 'enhanced CRB' arrived today, so now my scope for photography has widened and I am an official photographer for a local school. Who knows, it might help me to get a paid job one day :-)

'Prostate cancer' was a subject on Prime Minister's question time today. It got 55 seconds of time and that included the question from the MP and the answer by David Cameron. It kills 10,000 people a year in this country alone, and that is all it got. That's 20 Jumbo Jets full of people, crashing every year, how much parliamentary time would that get? 

My business cards arrived today, they look great, and all I need now is some part time business! Anyone got any work for a mature student photographer in Cumbria, willing to do anything within reason!!! I've got a feeling there might be more money in doing something other than wildlife, and if I see another photo of a Red Squirrel, I'll throw up. Our last trip to take 'Wildlife Pictures' was an animal park, before that we went to a Deer sanctuary to take photos of, yes, deer! There were so many deer and they couldn't escape you. I could have thrown the camera in the air and shot the 'shoot' button with an air rifle and it would have snapped a deer every time. They were even humping each other right beside us! I thought, if I don't move, I'll be going home bleeding! When I put a picture of a seagull in our first expedition, another student blurted, "It's just a seagull!" "Just a seagull", I replied, at least it's a wild animal, looking at his 'day trip to Thorp Pero' photos, where they nail various birds of prey to their perches after selectively removing some flight feathers and sedate their food with enough drugs to make them fly in circles, instead of making a break back to Africa!

Went to the Tapas Bar for Beverley's birthday, with Laura and David. Great night out, we went there a few weeks before with my brother Paul and his partner Christine. Paul thought there was something a bit surreal, sitting in a Penrith restaurant as Spanish dancers swirled around us, singing "aviiiiva Espanya" whilst throwing garlands around our necks. It was funny the day after when we went for a country walk and his feet decided to walk faster than his body, leaving his bottom rammed firmly into a muddy field! I shouldn’t have laughed, but hey!!

Well it's been great to catch up with everyone again, and good to see the Blog still getting around 30 hits a day, even though I'm not still dying!!!!

Wednesday, 2 March 2011

Went to the doctors today to collect my latest PSA result. A sickening feeling as I walked into the surgery, but a feeling that I am familiar with now, and one that I wonder if I'll ever get used to? I had my first PSA after surgery about a month ago, and was delighted to find it at .02, as low as it really can be detected. If this result was the same then that would be great. The receptionist looked at the screen and seemed worried. I asked what was wrong and she said that she couldn't find it. Of course I was thinking that she was thinking how bad it looked; the same old mind tricks that you do on yourself time after time. She then said that she had found it, but needed to ask a doctor something and swiftly disappeared. Again I was struck with the fear of wondering why she needed to see a doctor. When she came back she just, "That's fine", popped the result in an envelope and gave it to me. I walked some way down the corridor and sat down to open it. It was a similar feeling when you get that letter from the football pools, the familiar envelope, when you know it's a win, but you bet yourself it's only £3.50 and it usually is! Well I opened it, and it was as if it was £100,000...


Is that good? Well, yes, it's far better than 0.04 or 0.05 and sure as hell better than 3.8!!! It has increased from 0.02 to 0.03 but I am told that there are as much as 0.02 variations in different labs. If the next one is .03 or .02 then I will be delighted, but if we creep up to 0.05 then I can see radiotherapy in the distance. But wow, that's not bad to have it there as an option at this stage, so all in all......

                                     I am bloody delighted!

Tuesday, 1 March 2011

DO NOT start to read this link below unless you want STACKS of information and opinion on PSA. It is only for those who need to know everything and is not 'light reading'!  :-)
Sorry, so much technical stuff on here right now and not much fun! But as it's Prostate Cancer awareness month starting today, I thought it appropriate. This is a very interesting view on PSA levels after surgery, from a great guy called John on the forum.......(What do you think Paul?)

After my radical prostate operation (in April 2005), my PSA remained negligible for almost two years, but in the summer of 2007 began to rise.

The figures were:

1st March 2007 0.01
4th September 2007 0.03
29 November 2007 0.04
14 March 2008 0.07
19 June 2008 0.06
1st December 2008 0.10
3rd June 2009 0.20
10 December 2009 0.30
13 April 2010 0.32
26 October 2010 0.51

In September 2007, the hospital urologist who was then in charge of my case – a gloomy and rather negative fellow – threw a wobbly when he saw the rise from 0.01 to 0.03 and referred me to the radiology department. The head of radiology was quite clear – she thought it highly premature to intervene at that stage (she said amongst other things that she would prefer to have a physical target to aim at, and it was too early to have such a target).

Then for a brief while, I saw another of the hospital’s urologists (I privately called him Laughing Jack) who took a far sunnier view of the situation, and who cheerfully observed that “after all, we’re dealing in extremely tiny figures” – his conclusion was to let things be for the time being. “Lets leave it until we have a figure that we can really get our teeth into!”, he declared jovially.

But in March 2008, Dr Gloomy came back, said the situation was extremely serious, and that drastic remedial action was required immediately. There ensued a brief, incandescent, but inconclusive row between Gloomy and the head of radiology.

At that point, I got fed up, and decided to go private. I booked in as a private patient with one of the senior urologists who had assisted at my op, and I have had several hour-long sessions with him. He is impressed by the slowness (so far) of the rise in the PSA, and thinks that radiotherapy would be both premature and risky – risky in that it could inadvertently cause damage to my already fragile waterworks. He counsels hormone therapy, but is reluctant to recommend any course of treatment, hormone or otherwise, until the PSA passes the 1.0 mark.

Meanwhile, I feel fit and happy. Perhaps I’m living in a fool’s paradise, but I have established a very good rapport with the “private” urologist (we happen to get on very well together) and I’m quite willing, so far, to go along with what he recommends. My next PSA reading will be in three weeks’ time.

What does all this show? It certainly shows that there isn’t always agreement amongst urologists – even when the said urologists are close colleagues belonging to the same surgical team. In short, I have had to deal with Dr Gloomy, Dr Laughing Jack, a senior radiologist who has her own strongly-held view from which she won’t budge, and my present urologist. The tale also shows, to my mind, the importance of finding a urologist (or oncologist, or radiologist or whatever) who you can trust, and whose advice you respect.

As for PSA readings being unreliable - who knows? But in my case, I feel that they have shown a consistent and predictable picture. It's not the PSA totals that have been the problem, but the differing interpretations that have been put on them. But then that's life, I suppose.

Best wishes to all,


This is well worth looking at for future detection and sounds very promising.