1st July 2004
I've now had 15 radiotherapy treatments out of 20, and although I haven't reached the end, things are not as bad as I'd expected them to be by this stage. The prescription strength anti inflammatory medication seems to be doing it's thing, but not sufficiently to solve the problem of frequent loo visits entirely, so I swallowed my pride and sought help from the nursing staff regarding catheters. As I said before, there comes a time when the problems outweigh the embarrassment felt when looking for a solution, and not being able to enjoy my morning walk was the last straw. I reached that point last weekend when I had to go to the loo every 45 minutes day and night. It was too much and I was beginning to feel a little depressed, so I did the sensible thing and asked the nurse specialist about the possibility of being fitted with one of these devices. (I told you this was a warts and all account). I was expecting to have a tube inserted into my most personal parts in a manner that suggested that it would not be pleasant, but I hadn't realised that there was a type of catheter that fitted like a condom or sheath with a tube leading to a bag which straps to your leg. The nurse (A ward sister) discussed this with me in such a way that I felt no embarrassment or loss of dignity whatsoever, even when she demonstrated the device by fitting one on me. This would normally be every mans dream, but I can assure you that under the circumstances it was pure business. If only I'd stopped being a fool earlier, I could have avoided weeks of distress and discomfort, but that's machismo for you. This particular device is only useful for those who can still pass water. For the more unfortunate ones who can no longer pass water, the only solution I know of is the standard catheter whereby a tube is inserted which bypasses the blockage caused by inflammation. This may still be necessary for me if the situation worsens over the next five sessions, but at least I've been weaned into it a bit beforehand.
How does this sheath type catheter work I hear you asking yourselves? How does it stay on and why doesn't it leak? Well I can tell you it's as simple as using a type of glue or gum. The sheath is lined with this adhesive which, when it comes into contact with warm skin, seals itself to the skin and remains there until it's due to be removed. Now there's the rub, (perhaps that's not the best word I could have used) there you are encased in this well stuck condom, pubic hairs well and truly gummed up, wondering how to get it off. I thought about using the age old method of sticking plaster removal, you know, just whip it off in one quick movement. I pondered this a moment, tested the strength of the adhesive, and decide that this method would probably end up by being a DIY home circumcision instead, so I decided to remove it under the warm water of a shower, but it still required the use of a pair of scissors (very carefully used) to disentangle my hair from the adhesive. Needless to say, I've had a short back and sides to facilitate an easier removal next time.
For those who've never experienced the joys of having this type of catheter fitted, I can tell you it's a most weird experience. Unlike other types of catheter, this one leaves you feeling the normal sensations of going to the loo. This means that when your in bed, or out and about, and that urgent desire comes over you, you have, for all intents and purposes, to convince yourself that it's all right to wet the bed or your pants, because that's what it feels like your doing. It takes some strength of will to convince yourself it'll be all right. I still have to check with my hand to ensure I haven't wet myself, but with practice, the benefits are amazing. My only worry now, is when I stop using the catheter, I'll have to convince myself that it's not OK to wet myself. I hope I'm a quick learner! (so does the wife)!
For those of you reading this who are going through a similar situation, don't mess about, put your macho image on hold and seek advice as I did. You'll have to in the end, (in a manner of speaking) so it might as well be sooner rather than later.
2nd July 2004
I've Just discovered another drawback to using this type of catheter. This morning, I removed the catheter prior to my having a shave and shower. The removal was easier due to having had a trim before fitting it on this occasion (there's nothing like experience to show you how to avoid difficulties, but familiarity also breeds contempt, so it doesn't do to get too cocky (sorry, no pun intended)). Fine, no problems, just a little patience and gentle persuasion, and it was off. The circumstances were a little different to the first time though, as on that occasion I took it off in the shower. This time I'd removed it prior to going in the shower. What problems could this cause you might ask? well, I'll tell you. I stood in front of the sink and began to brush my teeth prior to showering, and as I was looking into the mirror, I leaned against the sink to get a little closer to it. I finished my teeth and stood back to get a towel when I was immediately dragged back to the sink with a painful jolt. The adhesive was still on my personal bits, and I'd pressed these bits against the sink as I'd leaned forward. The adhesive had now fastened my bits to the sink so that as I stepped back, my bits failed to travel with me, stretched, and sprang back with me attached. I have to confess a certain amount off fear and confusion, not to mention pain, entered my head at this time. I soon realised what had happened and extricated myself from the sink . You can bet that tomorrow, I'll be much more careful where I place my bits.
8th July 2004
Received my last radiotherapy treatment today. Spoke to a nurse and the doctor, who pointed out to me that the effects of the treatment would continue to increase for a week or two before they abated. It's a bit like food from the microwave still cooking after it's been removed from the oven. I told them how pleased I was that I had not suffered any serious side effects to date other than the increased frequency of trips to the loo, reduced urine flow and a little flatulence that would have allowed me to play "Colonel Bogey" in D minor. I spoke too soon! During the night, I awoke to a feeling of burning in my urinary tract , No! I wasn't on fire, it was the dreaded cystitis symptoms. My heart sank at the prospect of this painful affliction, but as luck would have it, the pain quickly diminished and did not return for the rest of the night. Perhaps all those gallons of cranberry juice I drank did the trick. I'll have to wait and see, but I'll be careful not to drink anything that might aggravate the situation.
Before I left the hospital I tried to contact the nurse who fitted my catheter as I was running out of them (You change them every 24 hours). Unfortunately she wasn't available at that time, and the nurse who spoke to me asked me what size they were. I hadn't realised they came in different sizes, I thought they were like condoms, one size fits all. I thought about it for a moment, then my machismo took over and I said "Extra large please". She must have realised because she asked me if I was sure. I had to admit that I didn't know, so I had to wait for the other nurse to return as she knew what size I'd been given the first time. When the original nurse returned I explained to her what had happened and had a laugh, as we both knew I was only medium. I've now got enough to last a couple of weeks so that should see me through the worst of it.
24th July 2004
Well, I wasn't prepared for things to get worse. I had hoped that the side effects would recede but over the last few weeks I've found it increasingly uncomfortable to pass water and my stomach has been much more sensitive to the foods I eat leading to my suffering from the "Skitters". (Diarrhoea) after eating some spicy food. Lasted for days so I'm careful what I eat now. Things should start to get better soon but I haven't noticed any improvements as yet.
Incapacity benefit. I'm sorry, you must have heard enough about it to last a lifetime, but I write about it to point out the pitfalls to those of you who try to claim it. I thought I'd heard the last after I filled out the last form, but no! I received a letter asking me to go for a medical examination to prove my condition. I'm afraid I lost it (My temper, not the letter). I phoned them and told them where they could stuff their examination, then I wrote a letter detailing the catalogue of hoops I'd jumped through for them to make the claim and finally told them to keep the paltry £1 a week I was trying to claim and hoped they could sleep in their beds at night. A bit extreme I know, but I was sick of all the hassle and I thought I'd put an end to it as it just wasn't worth it. What do you know! I've just received a letter from them telling me I've scored sufficient points in their system to allow my claim without further ado and no further medical notes or examinations until 2009. Hooray, they obviously think I'm barking and have awarded me points for it. This must surely be the end of the benefits saga!
31st July 2004
I can see the light at the end of the tunnel now.
No! It's not a train racing towards me, I mean that I'm beginning to notice improvements in my condition. I've stopped using the catheters, I can now lean against the bathroom sink without fear, my visits to the loo are not so frequent and I can digest a less boring intake of food and drink without unpleasant after effects. I have however discovered another down side to using those adhesive catheters. You know how difficult it is to remove the sticky gum used on elastoplasts when you've removed them? Well it's the same with the adhesive on these catheters. What problems can that cause you ask yourselves? Well I discovered that the adhesive sticks to cotton briefs as easily as to the bathroom sink. I've got the first Yo-Yo underpants in Stockton! I've now gone to great pains, and I mean PAIN, to remove as much of the adhesive as possible so I don't stick to anything else.
I'm looking forward to seeing the consultant to try and quantify the benefits of having had the radiotherapy treatment in terms of tumour size or comparative benefits with earlier symptoms/side effects. The appointments on 10th August, and up to that time I'm hoping to improve beyond the point I had reached prior to the radiotherapy starting, so I'll update this page if there's anything to report.
So what does the future hold for me? Well, three monthly PSA tests and three monthly hormone injections. As long as these remain effective I'll be fine, if not, then I'll have to ask questions about my prognosis.
More updates soon.............