For those of you who are regular readers and have read the previous posts on Cancer, you can skip this first paragraph. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested. 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 53 years old and in October 2011 I 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 gave 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 a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0, February 2015 it was up to 5.5 and my latest in August 2015 was down againg at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer), albiet with small mass. Today I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). 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?
So here I am, post procedure. Given that HIFU is a relatively new procedure and that there is not a huge amount of info about it, I thought I'd write up my experiences, so that if youa re going to have the procedure, you know what to expect. The doctors tell you what to expect, but like many things, they really can't share the experience with you as they are not on the receiving end.
Lets start with the pre procedure protoclol. I'd been through a pre-op admission procedure in December, where they checked I was healthy enough to be anaestetised. As the treatment is part of a trial, I also had an extensive session with a consultant, to fill in any questions I may have had. So I was told not to eat anything after midnight last night and then to drink only water until 7am. I had to be at UCH at 7.30am, which meant catching the 6.34am train. They'd advised me to bring pygamas just in case it all went horribly wrong as well as any medication I may need (I don't take anything).
So I arrived at 7.15am a the MacMillan Cancer Centre of UCH. I was fifteen minutes early and so had to wait in the main reception. There were a few other rather worried looking chaps lurking around. At 7.30, we were told to go down to the day surgery reception. So I went down and shortly after was asked to follow a rather nice nurse into the ward. As with all hospital procedures, there is the process of confirming names, addresses, DOB's, checking allergies, next of kin, etc. Then they took my blood pressure. This is normally pretty good, but was slightly higher than usual 135/95. They asked if I had high BP usually. I said no, so the nurse said "you are probably worried". I'm a pretty calm individual, but yes, I always think I am going to die when I have anasethetic. I don't usually tell anyone though (aprt from youd ear reader). It is the same as flying. I have never yet boarded a plane thinking it would land safely.
Then a member of the consultants team came around and gave me the figures. One in 500 have something horrible where the back passage and the urine tracts have an issue that may require surgery to correct. One in twenty have "leakage" three in ten need tablets to maintain an erection following the treatment. He explains that the bum will be sore after due to a rather large probe beng shoved up it, that I will have a cathetar for 5-10 days, that I'll have to come back to have it removed and that most patients say the cathetar is the worst bit of the experience (interestingly a friend who has had the treatment emailed me ast night to say the same thing). He also explained that the first thing would be an enema. Once all of this has been explained (again), I sign the consent form. There may be a few other things I was told, but I wasn't writing notes.
Then the anaesthetist comes around, and explains just how they will medicate you. He said that they'd take me down, put an oxygen mask on me, a line in my hand and knock me out. I'd be out for 1-2 hours. Once more they checked my name, DOB and allergies. he asked if I'd had a general anaesthetic before. Yep, quite a few times actually. Three prostate biposies, two ear operatoions, one inguinal hernia and partridge in a pear tree. No reaction? Nope.
Once he was satisfied that he wasn't going to kill me, he departed with a cheery "see you later". Then the nurse came in. I was given two theatre robes, a pair of paper grundies, some stockings to stop blood clots and some slippers. I was told that I could put these on shortly before I was ready to go down.
After about twenty minutes, the nurse came back and said "right get ready, then I'll give you an enema". So the process began in deadly earnest. After the enema, she said "right, you have to wait 5-10 minutes before going to the toilet. This is one time when my Roman Catholic upbringing comes in highly useful. As regular readers will know I am massively superstitious. At such times, I simply shut my eyes and say the rosary, counting it out on my fingers. Whilst I am sure Richard Dawkins wouldn't approve, it helps pass the time and makes me feel calmer and as if I am doing something positive to help my chances of surviving in the great health lottery. The rational part of my brain may say otherwise, but if you have ten minutes to focus on not doing a poo, it is as good a way as I've found (not trying to preach here, but it is a serious point that it is good to have some sort of mental exercise to make the time pass when you literally can't do anything and have to wait for something - it is worth having sort of brain stimulation, be it reciting the lyrics of Sgt Pepper, reciting your times tables or saying a repetitive prayer - it really does help). It worked so well that the nurs ethen came in and said "right go to the toilet now". Shortly after that I gathered my stuff together and walked with a member of the anaestetic team to pre op. It was around 9.15am.
They put a line in my arm, attached me up to a monitor. My blood pressure was now even higher 195/105. Clearly I was less calm than I wanted to be. An oxygen mask was put on my face, I was advised to breath heavily and then the anaesthetist said "right we are making you go to sleep now".
And how lovely a sleep it was. In fact, had I not woken up at all, it was so lovely I really wouldn't have minded. But happily, wake up I did. The clock said 12.15. The consultant came in and told me it went well. He said a few other things, but I didn't recall. Then I had a chat with the rather lovely nurse, who originated from Nigeria. She told me that she was planning her 60th birthday party. I was surprised, she looked much younger. I told her this which went down very well! She got me a cup of water and we had a good old chinwag. Ignorant fools will tell youy that the NHS can't cope with the number of immigrants in the UK. I can assure you, and I've seen rather too much of hospitals, it certainly couldn't cope without them.
Once I was deemed to be compos mentis, I was wheeled back to the ward. More blood pressure checks and a small snack and a cup of tea. I was told that I'd be given a bag of meds to take home and when I was deemed ready. A quick examination the cathater bag was done, which was duly emptied. Having been told the cathater was the worst thing (and sure this is early days), it is not half as awful as I imagined. I do have the sensation that I want to pee and poo all the time, but I was told this is quite normal.
The doctor came around and asked if I remembered seeing him after the op and what he'd said. Initially I didn't but then it came back to me. The message was all good. The next stage is to heal up. The meds included some antibiotics, some laxatives and something to "ease the flow", as well as a couple of spare bags. I was advised to try and "use the tap" after 24 hours. I must say having a catheter is an odd feeling. Not great, but hopefully be next week a thing of the past. It should come out on the 25th.
At around 3pm, I was deemed ready to go home. And here I am. It may seem a strange thing to do when you get home, to spend an hour writing a blog, but it focusses the brain and takes the mind off the discomfort. I hope if you are reading this in preparation for HIFU it helps.
Although it is unpleasant, it is not painful and the potential for side effects is considerably less than radical surgery. I do hope I am in the 70% who are completely Ok
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If you just want to know about the procedure and are not interested in my views on the NHS, then stop here. As a blogger, I do however have to pass on what I've learned.
Once again I am struck by just how blessed we are to have the NHS. I guess that if I was in a country without such a thing (ie nearly everywhere else), I'd have paid thousands for this. I am probably uninsurable to boot. I was quite irritated by another patient who was moaning at the nursing staff that he was last on the list. He was asking why he had been made to turn up at 8am, when he had to wait for hours. I felt like shouting at him "Go private if you want to choose such things", but thought better of it. We do take it for granted. We are one tiny island that is blessed to have chosen an enlightened government in 1945, who changed us for the better. As far as I am concerned, any politician who attacks the NHS is attacking me personally (and my children). In UK law we all have the right to self defence, don't we. I am a pacifist and I don't subscribe to harming other people, but I do wholeheartedly believe that any politician who attacks the NHS is either extremely ignorant or extremely dangerous (or both). We can afford a society that gives tax breaks to billionaires and foreign multinational companies, so don't tell me we can't afford to fund the NHS.