5th September 2005
Well, it's been a while since my last update and I'm sorry about this apparent lack of interest, but the fact is, as many of you in a similar situation will know, "No News, Is Good News". The fact that nothing's happening means nothing's going wrong, and any changes taking place now, would probably indicate that current treatment was beginning to fail.
I will instead, relate a cautionary tale to you regarding medication in general.
As those of you who have read all my diary will know, I take a variety of medications for arthritis, which include the painkiller, Dihydrocodeine. Last Saturday (27th August), I started one of my many holidays in The Lake District. That day I noticed that I was feeling a little nauseous and had an upset stomach, the start of one of those 24 hour bugs whereby your never away from a toilet if you get my drift, or to be more blunt, I was beginning to suffer from a bout of the galloping skitters or diarrhoea as it is more properly named. The problem increased in severity over the next four days, well beyond the point I felt it should have cleared up. I was visiting the loo every two hours day and night, I had severe headaches, stomach cramps, hot and cold clammy sweats, muscle and joint pain, twitching limbs and a tightness in the chest caused by feelings of deep anxiety. I lost almost one and three quarter stones (approx. 11.01 Kilograms) in weight and I've never felt so ill in my life, and there didn't seem to be any end in sight. On the Wednesday, I was desperate to get back to the familiar surroundings of my home and so I cut our holiday short and forced myself to drive the two hour journey it took me to get back. I made an appointment with my doctor for the following morning, but on waking that day I was worse than ever and was light headed and unable to leave the house. The doctor visited me at home and the consultation was a revelation and within hours of her visit, I was feeling 100% better. All my symptoms had disappeared or were greatly diminished.
No! I'm afraid I was the author of my own misfortune and had inadvertently exacerbated the severity of my symptoms and prolonged the length of my illness, which left to it's own devices, would probably have cleared in a few days.
At the beginning of my illness, and because of it, I was unable to eat any food. As my medication clearly states that it must to be "taken with food", and previous experiences have shown me how painful it is to ignore this instruction, I stopped taking my anti inflammatory and pain killing medication until I was feeling better and eating again. What I didn't realise was that I had become dependant on my painkiller, and was actually suffering from withdrawal symptoms well after the original bug had cleared up, I was just unaware of it as it merged from one thing to another so seamlessly. I've seen documentaries on TV about people trying to give up drugs, and the difficulties and horrendous feelings they suffer whilst doing so, but I never thought I'd be going through anything remotely similar. I never want to feel like that ever again, but as I'm "Hooked" on my painkiller, I'll have to seek medical advice about any future problems of a similar nature.
The moral of the story is, no matter how innocuous your medication may appear to be, take medical advice before you consider not taking it for any reason, no matter how logical it might seem. The outcome of such a course of action might be far worse than any benefits you think you may gain.
22nd October 2005
Well, it's been another while since my last update and a few days ago I had my regular appointment with the radiologist. I decided to ask him how it was that patients from other health authority areas were able to detail the weight or size of their tumour or prostate, which gave them the ability to compare pre and post treatment measurements, thus giving an objective comparison of benefits or otherwise relating to radiotherapy, as opposed to the subjective comparison that I had experienced.
The radiologist told me a couple of facts that put things in perspective. Firstly, prior to radiotherapy my PSA reading was 0.3 but after treatment it had dropped to 0.1 a small but nevertheless objective improvement. I couldn't argue with this, I just hadn't considered it before. Secondly, In order to obtain the size or weight of ones tumour or prostate gland, one would have to be subjected to the dreaded TRUS, or trans rectal ultrasound scan. One attack by Darth Vader's light sabre was sufficient for me and so I decided that discretion was the better part of valour, and opted to pass on this course of action. PSA results are quite objective enough for me now I know the alternatives.
I've just had a blood test for PSA levels prior to visiting the consultant urologist in a few weeks. I'll let you know what the result is, but I'm hoping it's still 0.1 or less.
30th October 2005
I was in London on Thursday (27th) for the Silver Surfer Awards sponsored by Hairnet.com, and what a day. The sun was blazing and it was so hot it was like a summers day. It really helped to make a good day better.
Lilian and I visited Portcullis House next to Big Ben for the presentation ceremony and because it's a government building, security was really tight. The awards were presented by Derek Wyatt MP. who is a member of the all party internet group, and a great advocate of the use of computers and the internet, particularly by us silver surfers.( to see Photos of the presentation.) I couldn't miss the opportunity to say a few words to promote the awareness message I'm always banging on about, even though I was the only one of the awardees to do so. In true BAFTA award winners style I thanked everybody responsible and threw in my prostate cancer awareness message. Well, there were members of the press there, I just hope they hadn't fallen asleep. One journalist was listening because she approached me later and expressed a wish to contact me again to work out an article for the magazine she represented. So it turned out to be a successful visit and I was quite proud to be the holder of a framed certificate pronouncing me to be a joint winner of the award.( to see the certificate.)
Unfortunately, the other joint winner, Stuart Davis was too ill to attend the awards. If your reading this Stuart, I was disappointed not to have met you, but congratulations to you on your achievement and I hope your feeling better soon.
14th November 2005
I returned to London, with Lilian, on the 2nd November, to give a talk to an audience of around 400 people at The Prostate Cancer Charity Conference, held the following day at Congress House in Great Russell Street.
My presentation was warmly received and contained my usual awareness story together with one or two small criticisms of the health service with regard to treatment of prostate cancer patients. I say small criticisms, as the conference revealed the results of a country wide survey of prostate cancer patients, which revealed an horrendous disparity of treatment and information between the different regions, and I then realised that my own health authority is in fact one of the best available, despite my small moans, something I'd taken for granted previously.
I was astounded by some of the results of the survey which suggested that some authorities left patients ignorant of what their treatment consisted of, or why they were having one form of treatment rather than another. Some, up to 25% of sufferers who responded to the survey, provided information about lack of treatment options, lack of involvement in the decision making process with regards to treatment, and a lack of information given to them about their condition at any time during their journey, which meant that they had no idea what tests they were undergoing or what the results actually meant. For instance, men were having PSA tests but didn't know why or what their result was or meant. Given that this is the first and most important point in the diagnosis and decision making process, I find it hard to believe that some regions are operating in the dark ages with regards to their methods. Visit www.prostate-cancer.org.uk and read for yourself some of the results. We should all contact our health authorities and badger them into putting their houses in order with regards to these problems. With this new knowledge, I now feel deeply sorry for those who live in area's which fall dismally short of the standards required of a modern day health authority. Hard to believe isn't it! but without knowledge, how would a patient know if his treatment fell short of the standards set by other area's? It's up to those of us who have knowledge to inform those less fortunate, of the standards that exist elsewhere and encourage them to demand that level of excellence.
Right, I've moaned enough, the hotel was excellent as was the food. The conference was a great success and as the press were there, the survey results I mentioned will be publicised. I was spoken to by representatives of magazines with a view to articles being published, which means the awareness message will reach a few more.
We enjoyed our visit to London, which on this occasion gave us a whole day to ourselves.....to go shopping!!!! I was absolutely cream crackered by the time we'd finished walking around, and we covered that much ground, I felt as though I could take "The Knowledge" and become a London cabbie.
On the 11th November, I had a routine appointment with my consultant. Lilian and I were sitting in a consulting room waiting to be seen, when I noticed, as I do, a chart on the wall showing pictorial instructions of how a woman should examine her breasts for signs of lumps. I mentioned this in passing to Lilian, who without thinking, said she knew how to do the examination, and began to check one of her breasts, but this was in front of the open door, just as the consultant was walking by. The look on her face was a picture as she quickly withdrew her hands from the area in question and blushed as good as any of my hot flushes. I wished I'd had my camera with me.
Our consultation revealed nothing new and no changes. My PSA is still 0.1 and long may it remain so. As the advert goes, the futures bright, the futures....NOT ORANGE! not after the run in I had with an ignorant young man on one of our train journeys. I had to sit through one and three quarter hours worth of him speaking loudly on his mobile phone, sorting out Orange's corporate phone accounts regarding a pharmaceutical company. I asked him politely to give it a rest for the benefit of myself and other passengers who'd had a moan. He was oblivious to the comfort of others in earshot and declared that he had a business to run, and suggested I vacated my reserved seats and find a quiet carriage. This from the man who did not have a reserved seat and who I had to forcefully demand to vacate my reserved seat, which he'd taken over without regard to the reserved signs attached to it. If this is the kind of representative Orange employ, you can be rest assured, I won't be doing any business with them in the future. Sorry, another moan, but doesn't it make you feel better to have a good gripe now and then.