'My 33 Days with Cancer'- radiotherapy following removal of prostate in 2017

My 33 days with Cancer

Day 15

Over the past two weeks I have known a man named David conversing as we drank our water waiting our respective turns in the corridor. David is 76 and he had his last treatment today he had 20 in total. His eyes were smiling over his mask as he was quick to tell me that it was his last day, I was delighted for him. Suddenly looking at David 76 didn’t seem so old. I liked him and reflected on how strange it is how people come and go in your life for only snapshots in time, some you know for years others for fleeting moments then they are gone this was one of them.

I mentioned yesterday that I would log and report back on how many times I visited the toilet in one 24-hour period, and it was Twenty, twenty times in 24 hours, 6 during the night and 14 during the day my Willy has never been so exposed to so much fresh air.

Bladder issues are without doubt the most difficult and common problem that most men must deal with, and most complaints I hear seem to stem from this area, however men are affected by it differently and to varying degrees. Get unlucky and it is a very unpleasant and upsetting side effect.

When this journey first started, I was like everyone else ‘in the beginning’ very reluctant to drop my pants and expose my ‘ample member’ but after what I’ve been through anyone who asks can have a look it doesn’t matter anymore embarrassment goes out of the window trust me you get used to it.

20th December 2016, ….I remember it like it was yesterday it was a clear crisp sunny winters morning as Marilyn, and I walked gingerly towards the Urology department at the park Hospital. Today was the day we received my results from the scan and the ‘mapping’ biopsy, and I remember very well saying to my wife as we were walking that this could be a day that changes our lives.

We waited quietly, anxiously in reception both clearly nervous about the outcome time seemed to stand still you could hear a pin drop although there were other people in the room.

We were eventually called into the consultants office…..and I knew the result instantly we both did he gave the game away because he couldn’t look me in the eye, he was quietly reserved whereas on every other occasion he had always greeted us enthusiastically making eye contact with a smile and offering his hand. This time it was different very different, we sat down in front of him, he didn’t mess around, “Unfortunately Peter the results of the biopsy have confirmed the presence of underlying prostate cancer” Although I already knew this in my heart, I was still clinging on to some hope that the results could be negative that is until he actually spoke those words then all felt immediately lost.

He continued speaking but from that moment I couldn’t hear a word he was saying his lips were moving but nothing was coming out it all became a haze although I was aware of him speaking over Marilyn’s tears, it was a very emotional moment. I had to stop him “You’re going to have to leave this with me” I said. “of course, take all the time you need” we made another appointment to discuss things further and left.

So that dear reader is what it’s like to be informed that you have Cancer.

Tomorrow I will explain how they evaluate the severity of the cancer that you have.

How am I feeling?

Ok I’m still at 1.5 and I am pleased to say that the fatigue that I was warned about has not yet reared its ugly head although been tired on occasion, but I put that down to not sleeping properly. I was worried about fatigue so far so good then. I class tiredness and fatigue as totally different things as I class fatigue based on how you feel if you get Covid now that’s fatigue!

On the bed at 09.12 in the morning…Tomorrow will be a good day.

Pete

#prostatecancer

My 33 days with cancer

Day 16

“Sorry I’ve forgotten your name?” “Tom” he replied, “I’ve forgotten yourn?” he said as he sat in the queue ahead of me clutching his plastic cup of water. Although we had met before we had only said hello in passing as our appointments had always crossed. “Av yo ad yourn out?’ he asked me “yes” “I avnt” he said.

Again, Tom is ‘a little bit chubby’ which is significant point in the story I am about to tell you. The next question was something I couldn’t suppress “How did you find out you had it, Tom?” “I dint no I ad it” he said……

AGHHHHHHHH!! Guys is this not resonating with you. Many men I have spoken to like me had no idea that they had prostate cancer I / we have heard this time and time again over the past two weeks can’t you see it’s a familiar pattern I really think it’s important that I get this message across to anyone reading this and wondering if its time they went and insisted on being checked out. Note: I don’t say asking for a prostate check, I say insisting on one, there is a big difference. Remember ‘the wheel that squeaks ALWAYS gets the oil’

“I ad DVT in mi leg” “you ad what” I said “DVT, Deep vein thrombosis” now at this stage I am so into knowing what happened next that I am praying that they don’t call him in.

“yeah mi leg swelled up like a balloon and they sent mi for blood tests, mi doctor for whatever reason don’t no why also asked them to include a PSA blood test at the same time, (normal range levels for a man of his age 60-65 are between 0 and 4.5 ng/ml) mi reading came back as 12ng/ml and 3 months later I went up to 22ng/ml although it dropped down a bit after that. I ad tu go for a mapping biopsy but they couldn’t do it with general anaesthetic cos I was tu fat” (my mind is now blown!!) “How did they do it then?” I asked

“Spinal tap” he said “which numbed me from the waist down” I think he is taking about an Epidural. “yeah I was awake the whole time as he put fifty individual needles in and out mi crutch couldn’t walk for rest ot day” (I was trying to write couldn’t in a Nottingham accent but had to give up) Now I don’t know any more detail here other than what he told me but it’s certainly a case for keeping the weight off, now he’s 15 days into a 20 day course of treatment.

“I also suffer from depression” he said. I’m not surprised after all that I thought. Doors swung open “Tom” they called him to the bed.

In 1966 Donald Gleason invented a method of measuring the severity of the cancer that you have by grading it after studying biopsies from 3,000 patients. This ‘Gleason score’ is now commonly used to tell a doctor how the cancer might behave in the future and to assess what treatment you may need.

Ok so as I understand it. There are 5 ‘grade groups’ 1-5 and your Gleason score determines which Grade group you fall into 1 being the least aggressive growing cancer 5 the most aggressive.

Your actual ‘Gleason score’ can be between 6 and 10 so for example if your Gleason score comes back as a total of 6 after they have analysed your biopsy sample then they will put you in Grade group 1 which determines that the cancer is likely to grow only very slowly on the other end of the scale if the Gleason score comes back as a 9 or 10 then this says that your cells look very abnormal and that the cancer is likely to grow very quickly.

Hence, they can determine from this what course of treatment options are suitable for you and these options can be various.

It gets quite complicated from here as the pathologist grades different cells from the same prostate sample biopsy and grades those to assess the overall Gleason score so in simple terms he or she might grade one cell with a Gleason score of 3 based on its less aggressive nature and another from the same sample a 4 thus they depict this as a 3+4 = 7 Gleason score total therefor is 7.

However, they might also find that they grade the samples 4+3=7 the difference is that a 3+4=7 means that the cancer is slower growing than they class a 4+3=7 which is likely to grow much faster, so this all depends on what the sample tells them. A Gleason score of say 5+4=9 therefore by definition is not good news as the cancer will grow more quickly. My score was 4+3=7 Toms was 3+4=7 his being slower growing.

All can get a bit confusing so I asked my consultant to explain it in plain English so he said “ok you’ve got 3 cars a 3 wheeler, a Ford focus and a Ferrari the 3 wheeler will never get there the Ford Focus will definitely eventually get there at some point and well the Ferrari your basically fkd! (My translation not his) I was in the Ford focus.

How do I feel?

Not the best day, a nagging ache in my groin all day and tired had a nap after nights sleep disrupted again. But I’ll stick at 1.5. On bed at 8.42am tomorrow then weekend break I am really looking forward to.

Pete

#prostatecancer

You're over halfway through 👍.

Hello Carlos,

Then you seem to be in exactly the same position as me. My Gleason score was 4 plus 3 so it looks like you will be advised to go down the same road. Its not that bad mate to date and I only have two sessions left and I am posting here after having written these blogs initially on Facebook. I am not saying its a walk in the park and its a right bind having to go to the hospital every day but if you are worried and want to talk about it let me know and I' can talk you through it.

Pete

Hello Chris,

Yes got one thanks and had to use it in one emergency. I was only about half mile from home and couldnt hold it anymore...close call.

Thanks Chris

Pete

My 33 days with Cancer

Day 21

Looking back its strange because there is so much to take in during this time, I am talking about the actual operation in having the prostate removed. You forget some of what you are told, you don’t listen sometimes, you don’t read the leaflets that they give you properly and maybe they forget to tell you stuff. Something else I didn’t read properly, or I simply cast out of my mind is that that you wake up with a catheter in place, looking at the picture from day 19 having not long woken up from the operation I don’t think that I was yet aware that I had one fitted.

If you ask any man, this must be his worst nightmare “Oh and yes and one last thing we are going to stick a pipe up your willy Peter” I had heard of this but never imagined it would ever happen to me.

I remember visited my father in hospital some years ago and there was an old boy in the bed next to him. “Nurse, Nurse I want toilet” “Nurse I need toilet” They ignored him, He’s shouting now “Nurse I need toilet I’m going to pee” The nurse finally arrived as I looked over to his bed shell shocked at the amount of time it had taken for a nurse to saunter over to him. “What’s up Derek, stop shouting” “I need toilet” he shouts “need toilet” “ok just a minute Derek” as I mentioned Derek is an old boy and doesn’t look very well, he’s certainly not about to jump out of bed anytime soon. Eventually a doctor arrives and pulls the curtain around the bed, like we can’t hear anything now. “I need toilet” he shouts again. FFS someone take the poor sod to the toilet.

Now I want you to picture the scene because its visiting time I’m sat visiting my dad in the next bed and there must have been at least six patients in that small ward, every patient apart from Derek had a visitor or two. Derek’s problem now takes centre stage “ok Derek” said the Doctor, “what we are going to do (he’s shouting now because Derek is deaf) is insert a tube up your penis which will allow you to Pee alright” again was that a question or a statement? Only a slight acknowledgement of the situation seemed to come from Derek.

I can tell you at this point the whole room fell silent time stood still, men you had never met in your life before looked at each other with twisted faces. “Ok Derek now try to relax I’m going to put some lubrication in to help it on its way” “AGHHEEEEEEE Derek began to scream there was a collective FFS throughout the room seriously it seemed to go on for ages, my thinking at the time was why the hell don’t you wheel him out and do it we don’t need to witness this. To a man we all felt sorry for Derek and complete silence was maintained until the screaming subsided. I cannot imagine ever going through that I thought, you wouldn’t be able to do that to me.

And here I am tube inserted in my Willy (I was surprised they had my size ‘Large’ in stock) The only good thing about this is that I was asleep when they put it in straight after the operation, so I was thankful for that.

The reason you must have a catheter fitted is to allow the new join made between your bladder and urethra to heal it’s in for about two weeks.

The surgeon actually cuts a length off of your urethra about the length of your prostate because the urethra actually goes through the prostate so you lose that bit, makes your willy smaller as its pulled back into the body because your urethra is obviously now that much shorter, he then re attaches your urethra back onto your bladder having removed the prostate. Educational this isn’t it?

Once it had dawned on me that I had one fitted I had the same fears as pregnant women must have in that ‘it’s got to come out!!!

Two weeks on we are at the hospital. Marilyn and I are in a side room waiting on the arrival of the nurse to remove it I am laying on the bed Marilyn sat beside me this is one time I needed moral support. This I was not looking forward to, I don’t know who was whiter me or the sheets.

In she walked a no-nonsense nurse from the old school you can just tell. Ok Peter what we are going to do this morning is take this out and then I want you to drink a litre of water SLOWLY as we need to make sure that you can empty your bladder properly before we discharge you so that you don’t then get any infection’s any questions?

“Yes” I said, “what happens if I can’t empty my bladder properly after drinking the water?” “Then it’ll have to go back in” she said. Panic enveloped my very soul. I was frightened to death. I’d be a screamer just like Derek.

Ok she said, “pants down” As I mentioned by this time, I was used to dropping my trousers for anybody, so this wasn’t a problem although your Willy with a catheter inserted is a sorry sight, he looked a very miserable specimen. “Right Peter I’m going to count three and on Three I want you to cough loudly, give it a good cough, ok!” “ok” I said happy to agree to anything that was going to make this easier.

I remember what was in my head at that time, it was that it had been stuck up there for two weeks so it must have stuck to the side wall of my urethra, and everything must be very dry I’m terrified this is going to hurt “one “ I’m ready “two she literally on two yanked it straight out AHHHH was my immediate reaction but here’s the thing guys it didn’t hurt I was amazed, relieved and very thankful and I am very pleased to be able to pass information this on.

Don’t know if you are aware but they ‘blow up’ a balloon at the end of the catheter once its’ been inserted into your bladder so it can’t fall out then they deflate it to remove it, clever eh.

How am I feeling?

Ok two weeks and one day to go so hoping that it goes without further incident.

At 1.5

Peter

#prostatecancer

Well Peter, you made me laugh about your antics with things up your delicate bits. It may be my last laugh as by this time next week I will be looking  down thinking whats that tube doing there. Can I just ask when they say they will examine you with a telescope, is that a 6 inch one, and is that the length or the width?

Here's me thinking TURPS was something to clean the paint brushes with.

Next year I will look forward to Radiotherapy and I will remember your blog.

Steve.