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

User

Posted 31 Oct 2021 at 11:40

My 33 days with Cancer.

Introduction.

Hello Everyone,

My name is Peter Mitchell and I am entering this blog each day on my Facebook page but just thought some of you on this site may be interested in its content. The idea is that I write a brief introduction / background here before I start writing ‘My 33 days with Cancer’ blog. My intention is to write about my experiences ‘warts and all’ giving a day-by-day commentary of what I am going through with my Radiotherapy treatment, what actually happens and how I am feeling at any given time, both to help people better understand what it’s like living with Cancer and in the hope that other people who may be going through a similar experience may relate to what I write and to encourage a wider discussion and understanding of this disease as current statistics show that one in two of us will contact cancer in our lifetime.

At times I may attempt to regale you with past incidents and write about what happened back in 2016 when I was first diagnosed, how I was diagnosed and my subsequent treatment, furthermore how and why, I think my initial treatment failed after having my prostate removed which was supposed to cure all.

If anyone knows anyone who may be going through a similar experience with Cancer, it also may be of interest to them, and I would appreciate it if you would share my blog with them. I am prepared to answer any questions anyone has in relation to this subject so let’s get started if you would like to join me on this ride.

Regards

Pete

#prostatecancer

Edited by member 07 Nov 2021 at 19:34 | Reason: Not specified

User

Posted 31 Oct 2021 at 11:40

My 33 days with Cancer.

Introduction.

Hello Everyone,

Regards

Pete

#prostatecancer

Edited by member 07 Nov 2021 at 19:34 | Reason: Not specified

User

Posted 01 Nov 2021 at 16:05

Interested to hear that your waiting room was quiet, Pete. When I had my RT it was all rather jolly! You quickly got to know the other "regulars" and we all always used to have a chat. Did you have no "prep" to do? Micro enema? Three cups of water?

Best wishes,

Chris

User

Posted 04 Nov 2021 at 00:36

Time to recuperate? John's appointment was almost always 8.30am and he was usually on his way to work by 8.50!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Nov 2021 at 11:22

My 33 days with cancer

Day 5

Passed John on the way in this morning, at least I heard someone call him John, John’s the one with the big drain coming out of his head sat on the wall cigarette in one hand and drain bottle in the other, that’s ok John but can someone tell him the bottle is see through ffs. John is a ‘grey’ person so really whatever makes you happy John. Think I will drop him off 20 Silk Cut tomorrow.

Hello what are you in for asks Paul, as I arrive in the waiting area “Prostate’ I reply “me to’ says Paul. Paul has stage 3 Prostate cancer and has not had his prostate removed because they ‘caught it too late’…. ‘no point’… and the cancer has escaped from his prostate into his lymph nodes and is now travelling around his body, not good! “I’ve got 10 Radiotherapy sessions” says Paul “how about you?”… “You lucky b******!” I reply “I’ve got 29 left”

Paul must have more intensive Radiotherapy treatment because he is so far gone hence his treatment is applied in only 10 sessions whereas mine is applied more gently over 33. I’ll take the 33.

Richard arrives to take the place of Paul who has just been called in. Richard is not a grey person yet but has advanced Bowel cancer stage 3 he’s 53. Now as most of you will know I am an inquisitive type of guy, “How did you know something was wrong” I asked, and he told me he kept going to the toilet a lot more than usual for a number 1 in fact at its worst it was every 20 minutes. Richard has 30 sessions, but he is also on Chemotherapy tablet form. He loses track on how many times he gets up in the night to go to the toilet now, which in itself makes him very tired, and I am beginning to experience this.

My turn and the machine stop’s circling around my body and I know what that means from previous experience. Light’s come on and in walks Janet “you need to go and have a trump Peter you have too much wind” (me mam used to say trump not sure its commonly used anymore) apparently it doesn’t work if you have too much wind. I blamed the wife.

This however puts another half hour on the time spent having treatment. Not happy can’t make that mistake again. Now I am in a bit of conflict here as Janet has instructed me to walk up and down the corridor to try and loosen and get rid of the excess wind and to come back in 15 minutes. When I arrived, the corridor was empty now its busy and the problem is that I am conflicted as I don’t want people to hear me trump! So, I end up holding it in. a nightmare! But got there in the end. Julie Janet’s assistant says don’t worry about it but I know what she’s really thinking.

THE MESSAGE

Guys please not let us lose sight of the message here please if you hear of a friend or relative that keeps ‘putting it off’ please encourage them to ‘GO GET CHECKED OUT’ you can all help by simply sharing this post we can all work together to help save lives because seriously you don’t want it ‘escaping the prostate’ trust me.

How am I feeling?

My intention is to record how I am feeling each day so we can track how the treatment affects me at different stages which anyone following me can reflect on if they so wish and to hear it from the horse’s mouth so to speak.

So out of 10, 10 being really bad I’d say I’m at a 1.25 at the moment and the 1 is automatically added because I’m feeling p****d off about having it in the first place.

#pr

User

Posted 06 Nov 2021 at 17:23

Thanks Gary I want you to know that I agree with everything you say. Good luck to you to. Lets enjoy life to the full certainly concentrates the mind to that.

Regards

Pete

User

Posted 12 Nov 2021 at 12:59

My 33 Days with Cancer

Day 9

Ok day 9 and I can honestly say its feeling like Groundhog Day and becoming very monotonous. Problem is now that I am on this train there is no getting off although I would dearly love to.

I have had a bad, and seriously emotional morning this morning. Waiting in ‘the line’ I started talking to a young woman sat by herself looking at her phone. “Waiting for someone to come out” I asked. No, she said, “I’m in next” What!! I really didn’t expect that coming from such a beautiful, young woman when the majority of people I come across ‘in the line’ are elderly. Curiosity got the better of me, why? “I have cervical cancer” she replied. She is 34 and her name is Jenny.

Her mother joined us with her coffee. Now Jenny like nearly everyone else I meet around here is more than willing to discuss why they are having treatment. She has had her cervix removed but the cancer has spread into other parts of her young body. She is a lovely outgoing person and I instantly liked her she tells me that she has a 4-year-old child at home oh and not forgetting her new recently born twins. Jenny has 2 weeks left of an extensive course of treatment. The main problem for her is the fatigue. She is finding that basically all she can do is sit on the settee all day she has it that bad. As Jenny shares her story you can tell looking into her eyes that she is frightened, frightened of what the future might hold.

This affected me if I am honest as I cannot imagine what she must be going through mentally as well as physically at such a young age with such young children. I admit to ‘having a moment’ when I got back to the car.

A clear message here to all women putting off having a test, thinking you will be ok because it always happens to someone else doesn’t it?..... Go get tested!

I think for anyone contracting Cancer the problem is (generally speaking) there is no quick fix you can be living with it for months maybe years before you know whether the treatment you have undergone has been successful. As I mentioned previously, I won’t know until 11th January so it’s vital that you keep your head right otherwise, I can imagine the whole process could become a nightmare for you especially if you let your mind run wild in imagining what might happen. Personally, I have trained myself not to think about it as there is no point worrying about what ‘may or may not happen’ I can imagine it would only serve to drive you mad although I admit it’s not easy, I have had my moments.

However, it is ‘pretty fkn difficult’ not to think about it when you’re having to get up to go to the toilet literally 6 times in a night every night over the last three nights for a pee. Anyone with Prostate cancer will tell you that it really messes with your ‘Willy function’ and over the last three days this has got worse, much worse!

“Your drinking enough aren’t ya” asked nurse Rachet. They advise you to drink loads but at first, they didn’t explain why, it’s to help stop infection when your immune system is struggling to keep up with the damage done by the Radiotherapy and they don’t want stale urine sitting in your bladder, so you need to constantly flush it out. So, you drink a lot and then pee even more…a vicious circle. Needless to say, I can never make it home now without a stop at one of my pee stops, and guess what? more bad news, my mate Shaun’s gone missing. However suppose I can finish with some good news, at least I am not a sheep!

How am I feeling?

Ok well having to increase to 1.5 / 10 today because of the toilet problems I am having otherwise much the same apart from a dull continuous ache in my lower left groin area.

NB: I have changed the names of all the people I meet in my blogs.

#prostatecancer

User

Posted 21 Nov 2021 at 15:46

He is still updating his blog elsewhere, now on day 22.

Thanks Chris

User

Posted 23 Nov 2021 at 14:00

Pete, just to be clear - the cancer can be entirely contained within the prostate and still spread to bone or lymphatic system. The risk once cancer escapes from the prostate (in the way that you have imagined above) is that it spreads to other close organs such as the bowel or bladder but the spread to bones & lymph is through the body fluids flowing in and out of the prostate .... blood and lymphatic fluid.

Your query re cancer spreading as a result of the biopsy - it is called needle tracking and there has been significant research all of which was inconclusive. There are no recorded cases of needle tracking from a TRUS biopsy and only a tiny number of suspected (but unproven) cases following template biopsy, all of which are in America where litigation is rather popular. Considering the number of biopsies done each year, the data suggests that needle tracking is not a real thing and microscopic spread had probably already happened before the patient was referred for biopsy.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 01 Dec 2021 at 19:00

My 33 days with cancer

Day 17

Walking from the car park for my treatment this morning I reflected that there are only two types of people really those who are sick and those who aren’t. The two live side by side but ‘worlds’ apart from each other so unless or until we become sick ourselves or someone, we love becomes sick, we never see what goes on behind the walls of the hospital. We see the walls we know they are there we pass by them every day, but we avoid venturing behind them at all costs unless we are forced to because becoming sick is a scary thing to think about so naturally, we put it to the back of our minds and dismiss the thought hoping it will never happen to us.

I think that’s why becoming sick ourselves comes as a bit of a shock as it always happens to someone else doesn’t it? But I also think that’s right, life is for living and we should all live it and embrace our good health while we have it

The big problem when we do become sick is that we have trained our minds not to think about it so when something unusual, something different something that’s ‘not quite right’ does happen to us, our first reaction in many cases is to ignore it.

You noticed a bit of blood in the pooh this morning, didn’t you? or was it in your urine? that lump looks a little bit bigger than it did yesterday doesn’t it? you’re peeing more than usual aren’t you? You keep getting those bad headaches over your eye, don’t you? the list goes on.

But you know don’t you? stood in that secret space that is you’re bathroom you know, and you’re stood looking in the mirror thinking NOOOO, s—t, that moment when the horror emoji comes out to greet you, you know! you don’t need anyone to tell you that it’s not right that you have a problem yet the thought and fear of what awaits you behind those hospital walls somehow sends you a bit daft! Common sense flies out of the bathroom window “It’ll go away” you say to yourself “I’ll have another look tomorrow maybe there will be no blood tomorrow”, “maybe the lump will have gone in the morning” and you ignore it the fear stops your brain from functioning properly and you ignore it time and time again preferring just to wait and see tomorrow. But tomorrow I am afraid is not ‘always’ going to be a good day.

You have started to speak to yourself a lot now, haven’t you?...Things like… “I’ll tell you what I’ll do I’ll wait until blood really starts to fill the bowl,” “I’ll just wait until my lump gets a bit bigger”, “I’ll wait until the pain over my eyes becomes more intense”

The problem is that eventually you’re only going to get carted off behind the wall anyway but the difference is that you now must undergo s—t that you wouldn’t have had to go through if you had gone in the first place and caught it early, does that make any sense to you?

Why do you do this? because you are frightened. We are all frightened of the unknown but the reality of letting things go too far can mean the difference between how little or how much time we have left to spend life with the people we love, so you might have to have a needle inserted into your arm so they can take some blood I would say a very small price to pay when the people behind the wall can catch things early and then you get to spend more quality time with the people you love and I’ll take a prick in my arm anytime or in my case up the bum to achieve that.

I can see that horror emoji appearing again!

And the message, do not ignore what’s obvious when ‘you know!’

Rob went in to see his doctor as he had ligament trouble with his ankle, turns out he has, prostate cancer and… now how did he put it? …“I’ll be alright when I’ve had mi kidney out cos got a cancerous growth on it, thank god they caught fings in time cos the cancer is still contained within mi prostate”

How am I feeling?

Ok mainly a dull ache in my groin area but still at 1.5 going into the weekend.

Looking forward to two days off as it does become a bit waring by Fridays.

Have a good weekend guys.

Pete

#prostatecancer

User

Posted 04 Dec 2021 at 09:04

Hello Carlos,

No problem, drop me an email on peter.mitchell@gmx.co.uk and I'll let you have my number for a chat.

Pete

User

Posted 05 Dec 2021 at 13:20

My 33 days with Cancer

Day 20

As I lay prostrate (not prostate) on the bed she slipped another grape between my lips with her long elegant slender fingers her ample exposed breasts tantalisingly close whilst her perfume filled the air with such sweet fragrance I had never before experienced, below sat another scantily clad beauty massaging my feet with virgin coconut oil, either side of me lay two more naked women gently rubbing Eucalyptus oil specially imported from the Gardens of Babylon through my fingers. She leaned over whispering gently into my ear “Peter, what would you like, what would you like Peter?” …….”Everything! …”I replied…Then she started shouting at me ”Peter, Peter, wake up Peter what are you like’ I opened my eyes to find nurse Rachet leaning over me in an attempt to wake me from this anaesthetic bliss I was experiencing. FFS was my immediate thought just give me another 5 minutes as in vain I fought to fall back to sleep.

Eventually I remember being pushed into my own private room, after all I was a Bupa private patient. This was alright, the room was lovely, equipped with tv etc everything you need for a relaxing overnight stay although I can think of better ways of spending a Friday night. No naked women supplied though which was a huge disappointment, although I don’t know what I would have done with them if there had been.

It was about midday now and I was eventually visited by my family we talked they asked how I was feeling etc when suddenly it rose from nowhere, “I’m going to be sick, I’m going to be sick” Marilyn passed a bowl to me just in the nick of time, projectile vomiting like you have never seen. I have never experienced anything like it whilst not under the influence of drink anyway. It never stopped I think I filled six bowls one immediately after the other the family were passing them constantly ‘down the line’ like passing buckets along to douse a fire, it was truly an horrendous scene. I found out it was a reaction to the anaesthetic.

Eventually my visit was coming to an end as it was late afternoon now and Marilyn was thinking of leaving for the night leaving me to relax in my room when at that moment all hell broke loose my room doors burst wide open, porter’s and nurses filled the room wheeling in a big bloke on a bed wtf was all this, this is my room. He didn’t look good but that’s not my problem ‘get out’ he was followed in by his crying wife crying like he was on deaths door into her handkerchief this is all I need.

What’s going on? It slowly dawned on me that this was to be my roommate for the night as he didn’t look like he was just passing through, he had had his prostate removed after me in the afternoon slot and was just brought up from theatre, so he was a good 8 hours behind me, great my night was ruined. They threw the curtain around his bed whilst they settled him in. Eventually everyone left and it fell silent. The nurse drew back the curtains to reveal a sorry looking giant sat up in bed. He looked over clearly feeling sorry for himself “Hello my names Steve”

How am I feeling?

Still at 1.5 thankfully although had my worse night ever having seriously lost count on how many times I got up to go to the toilet it’s the hardest part to as it makes you tired due to the lack of sleep.

Pete

User

Posted 07 Dec 2021 at 14:26

Hello Steve,

Size doesn't matter whatever size your told it is wont stop you worrying about it, like fishing you can always exaggerate the size afterwards which should give you some kudos you'll get through it mate don't worry its only a 'moment in time' you wont feel anything anyway.

Good luck, remember to give us all the details later

Peter

User

Posted 07 Dec 2021 at 17:44

Just for anyone else afraid of catherter removal. I was dreading it. It was 1 week post op and I couldn't imagine the new joint (anastomosis) being healed in that time. The district nurse arrived to my house and I said "the only way this is happening is if I pull it out myself" I just wanted to be in control if there was any pain or resistance. She didn't even object. She deflated the balloon and I just slowly pulled it out. There was no resistance or pain what so ever. If I'd have been stood up it would have fallen out on it's own. Since then I have had another due to dilation for a stricture and did exactly the same with a different nurse.

Since then I self catheterisation regularly to keep the stricture open. Although I struggled to get them in at first now it is no problem. Its all about relaxing inside correctly.

Cheers

Bill

Show Most Thanked Posts

User

Posted 31 Oct 2021 at 23:19

Hi Peter,

A couple of comments if you don't mind.

People on here like to see how you got to where you are by looking at your profile. I was operated on 5 years ago and am interested in why you're having RT.

It's misleading to call it 33 days with cancer when you've been operated on 5 years ago and are actually writing about a course of radiotherapy.

You probably know it will be better to use the Reply function on your first post and not start a new thread 33 times

All the best with your treatment.

Peter

User

Posted 01 Nov 2021 at 15:48

Hello Peter,

Many thanks for your response I have named it 'My 33 days with cancer' because I have to undergo 33 days of radiotherapy treatment. I am having to have it because my PSA is going up again after the removal of my Prostate some years ago.

I hope to post my first days experience soon.

Regards

Peter

User

Posted 01 Nov 2021 at 16:00

My 33 days with cancer

Day 1

Cancer is not dissimilar to Boxing. Once everyone has left the ring, you’re on your own even the Radiographers walk out! and it then becomes a lonely place leaving you feeling very emotional and vulnerable with your pants down on the Radiography table.

After initially being diagnosed with cancer you quickly come to realise that you are simply a number with the NHS it’s not their fault, they are simply overwhelmed with the thousands of us that make up this community. However, this comes as a bit of a shock at first because its personal to you, your allotted so much time with the professional’s then that’s it…. next!!!

Anyway, I arrived on time at the city hospital Nottingham and was met by a nurse who then proceeded to give me a 20 min monologue of all the things that can go wrong, she even kindly presented me with a list to take home so I could go through it again at my leisure.

“Do you still want to proceed”? She asked. I didn’t have much choice.

Waiting in the corridor to go in for ‘my turn’ I am surrounded by some very ill grey looking people some a lot further down the line than me all waiting patiently. You could hear a pin drop. Then the silence is broken, doors fly open.

‘We are ready for you now Peter”

The nurse leads me in. I really don’t want to do this; shall I just go I said to myself you don’t have to do this. They direct me to lie on the bed. Shoes off pants down is the cry.

Now I’ve often thought that I would like to be on my own in a darkened room semi naked lying on a bed surrounded by three women, but this is not exactly what I’d got in mind.

Having been previously assured that it ‘won’t hurt, you won’t feel a thing they line me up against the tattoos that had previously been placed on my sides and stomach directly over the prostate bed. Everyone leaves and you are alone, emotional moment!

The procedure only takes about 8 min total including lining you up and only about one minute for them to irradiate you if that’s the word. What is more its true you feel nothing. Some good news then to end the day.

#prostatecancer

Pete

User

Posted 01 Nov 2021 at 16:05

Best wishes,

Chris

User

Posted 01 Nov 2021 at 16:18

Hello Chris,

Yes prep exactly as you describe. I am actually a few days in now having posted originally on my facebook page not met too many jolly people though yet but sure I will come across a few.

Thanks Chris did it work for you?..hope so

Regards

Pete

User

Posted 01 Nov 2021 at 16:26

Had my RT in Feb/Mar 2019, Pete. Just had my 6-monthly PSA test for 2.5 years after the end of treatment, and all looking extremely good.

I'm sure you're aware that RT symptoms are cumulative. I had nothing to write home about for the first four weeks of my treatment, but then things started to build up. Difficulty and pain peeing due to the radiation making the prostate swell and irritating the bladder, and passing (sometimes without warning) mucus from the rear end. If this happens to you (and it is very common), get a prescription for Tamsulosin for the flow issues and drink cranberry juice for the burning pain. The side-effects generally peak a couple of weeks after treatment ends, and then subside.

Best wishes,

Chris

User

Posted 01 Nov 2021 at 17:20

Phewwww thanks for that Chris thought I was doing well...something to look forward to, really appreciate the advice I will refer back to it when needed. So you haven't had the Prostate out then you opted for Radiotherapy instead? I had mine removed back in Feb17 but PSA rising again, hence radiotherapy 33 days.

Regards

Pete

User

Posted 01 Nov 2021 at 17:33

Sorry, I wasn't aware that you'd previously had a prostatectomy. You certainly shouldn't experience the flow issues in that case! Yes, in my case RT was strongly recommended as a treatment, so I went with the advice from the MDT.

Best wishes,

Chris

User

Posted 01 Nov 2021 at 18:18

Had my 37 days off radiotherapy at city hospital Nottingham too hope you breeze through it like me gaz

User

Posted 01 Nov 2021 at 21:15

37 Days wow. Thanks Gaz must admit its a bit of a slog at the moment. Good to hear that it went well for you.

Thanks

Pete

User

Posted 02 Nov 2021 at 17:10

We seem to be in competition as fellow cancer bloggers!

Mine is from 2018 onwards, still updating it regularly.

https://stewart124.wordpress.com/the-prostate-thing-23-there-are-side-effects/

User

Posted 02 Nov 2021 at 20:40

Keep on plodding peter you will get to the end I was lucky I suppose had 37lots off radiotherapy and went to work after every session and had very few side effects I know not everyone is as lucky good luck to all fellow survivors I was Gleason 9 PSA 24.9 now PSA 0.01 but still on decapeptyl for another Year 👍

User

Posted 02 Nov 2021 at 21:58

Day 2

Most people start the day with a coffee mine started with an Enema! Apparently (and admittedly this came as a bit of a shock) your bowels must be cleaned out before each treatment. Loved receiving that bit of news!!...told you this would be ‘warts and all’

So, I must use one within two hours of each appointment and it can be an hour’s drive to the hospital, so timing is paramount. Now for the uninitiated these things go up you bum! and believe me things start to happen very quickly after application.

However, if like me you are not used to any interference in that area it can be a bit daunting. Can’t I just drink something I asked as she handed me the box.

I decide that it would be wise to have a practice before Day 1. Now that was interesting as I caught site of myself in the bathroom mirror (another lonely place) trying to apply it. Not a good look manoeuvring trying to find the right position to stand, lie, bend but eventually worked it out its to stand! And from experience some great advice do not rush it! 5 minutes later…a job or should I say jobbie well done.

Arrived day 2 at the ‘South entrance’ can’t help noticing a row of three patients standing outside in their pyjamas all with cannula’s attached and smoking. Really!

On the bed again, got unlucky two blokes this time but a bit less emotional…man up Pete.

10 minutes later end of Day 2 and home to wine. Got the weekend off so that good.

How am I feeling?......No problems so far.

Regards

Pete

#prostatecancer

User

Posted 02 Nov 2021 at 22:01

Really pleased to hear it turned out well Gaz gives me heart thanks for your message much appreciated.

Regards

Pete

User

Posted 02 Nov 2021 at 23:52

No worries I couldn't get on with the enemas told me not to bother after 3 sessions of radiotherapy had last 34 sessions without no problems and no enemas 👍

User

Posted 03 Nov 2021 at 12:02

Gaz thats heartening, to hear especially after they frighten you to death Im 10 days in now and fingers crossed feeling not too bad. Wouldn't like to have to be going to work after though.

All the best

Pete

User

Posted 03 Nov 2021 at 18:49

Needs must peter I am afraid had to work after treatment 🙄

User

Posted 03 Nov 2021 at 19:01

Day 3

Arrived on time for my 7pm appointment last night, but the hospitals running late! Odd but the hospital has a totally different feel at night like it’s been abandoned. Everyone has gone home; you can park easily which is good but there is a sad air about it in the dark.

Met Carolyn, ‘in the queue’ sat in her wheelchair with her husband by her side both looking ‘grey.’ Me mam used to say, “there is always people worse off than you” and these people are not hard to find if you hang around this place long enough and Carolyn is certainly one of them. She told me how at 58 she suddenly began not to be able to breath properly, tests showed that she had cancer of her Ovaries and they removed 3.5 litres of fluid from her lungs, it subsequently spread to her pelvis then her lungs until now it’s reached her brain. She’s now 61. She is waiting tonight to have radiation applied to that part of her brain that the cancer had spread to. It was quite emotional to see this lovely brave lady being wheeled away to receive her treatment. Her husband said that they knew there was no cure, but she just wanted to live long enough to see her granddaughter born in January.

You just don’t see this in our everyday lives, and it got me to wondering how ‘Tony the radiographer’ emotionally deals with seeing this first-hand every day.

Now they are queuing up behind me more grey people. ‘Grey people’ have dark soulless eyes, they are not all grey, but you can tell them apart from the newbies.

Brian walks in joins the que he’s in for his Prostate we don’t speak but I can tell because he heads straight for the toilet then for the water tank. On arrival we must immediately go to the toilet empty our bladder and re fill it with 3 glasses water. Your bladder must be filled to the exact proportion before every treatment. Herein lies the problem for anyone like me who has had their prostate removed and their appointment put back as its ‘REALLY HARD’ to hold it for long so any delay with my appointment becomes a problem for me.

10 minutes later and Carolyn emerges smiling. “Peter Mitchel now please” is the shout. May have just shouted “NEXT!” Carolyn passes on her way out I stop and hold her hand wishing her good luck.

I emerge 10 minutes later the way out I hear “Hello Brian”

#prostatecancer

User

Posted 03 Nov 2021 at 19:03

Suppose it kept me busy at no time to worry about the treatment could only get 78 pounds a week benefits never had a day off sick always worked they seem to look after the habitual lay abouts more than them who work but he oh nothing to thank them for 👍

User

Posted 03 Nov 2021 at 20:03

"how ‘Tony the radiographer’ emotionally deals with seeing this first-hand every day?"

I think you answered that in your previous post, about how we turn in to numbers in the NHS machine. The staff are always polite and pleasant, but I hope for their own mental health, they just look at us as slabs of meat, to be put on the grill once a day for five minutes until done. Would you like fries with that?

Dave

User

Posted 03 Nov 2021 at 20:10

Classic 🤣🤣

User

Posted 03 Nov 2021 at 23:03

Hi Peter,

A good read. I didn't know it was a trousers down, lie on the bed, quick type of thing. I'd always thought you'd put on an NHS gown and it would take about an hour with time to recuperate.

Regards
Peter

User

Posted 04 Nov 2021 at 00:36

Time to recuperate? John's appointment was almost always 8.30am and he was usually on his way to work by 8.50!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Nov 2021 at 14:07

For me it was turn up 20m before the appointment time, go to the loo, three cups of water, then sit down to wait. Called in, shoes and trousers off, lie down on the table, pull the undies down, two nurses line up your tattoos with a laser grid projected down onto the table, then they scarper. Radiation come on, the donut-shaped machine goes around one way, then around the other way, and you can hear the lead plates moving around inside the head of the machine as it precisely shapes the radiation beam as it moves. Nurse comes back in and lowers the table. Undies up, get dressed, and go home.

Repeat daily Monday to Friday 🙂.

Cheers,

Chris

User

Posted 04 Nov 2021 at 16:10

Hello Peter,

No it's pretty straight forward .

Regards

Peter

User

Posted 04 Nov 2021 at 16:11

Hello Chris,

Nothings changed

Pete

User

Posted 04 Nov 2021 at 16:32

My 33 days with cancer

Day 4

Ok this Enema thing is getting a bit waring if I’m honest. Thought I had cracked it, but I haven’t. Think lying down might be the best bet now but not sure yet…. I’ll report back.

Day 4 and I have quickly come to realise that if you are rubbish at planning ahead this is not for you, and you should give it a miss. Timing is essential. Fortunately, I am pretty good at it, but I can imagine some people might struggle as there is so much to think about. I carry a bag the contents of which include amongst other things wet wipes and spare Enemas which I hope not to have to use a second time in a day but again if your timings out a bit you might have to, so I try and avoid this given the 2-hour window between initially, delicately I might add shoving one up ones anus and the actual treatment, miss it and your off again for another go.

What a piece of kit the machine is that delivers the treatment the hospital has 6 of these going at it full time all day sometimes until 8pm at night dealing with up to 40 patients a day that’s some 240 people every day going through this on various parts of their body depending on where they have been affected.

My thoughts this morning as the machine manoeuvred around me where ‘I really hope they know what they are doing…. what happens if they have mixed me up with someone else or one of them has had a bad night and is not concentrating and they give me a bigger dose than they should…. all a bit of a concern given the application of the treatment is so close to my willy because over the years I have become quite attached to it. The treatment is applied no more than an inch above it. I don’t think I appreciated how low down in the pelvis the prostate is.

Anyway, onward, and upward back again 8.54am in the morning what a treat!

How am I feeling? ….Yes, ok at the moment Tony says problems don’t normally appear until

7 /10 days in, something to look forward to.

See you tomorrow.

User

Posted 04 Nov 2021 at 17:08

For me the policy was empty bladder. They did not seem worried about bowels, maybe the pre treatment scan meant they could adjust for that. I always had late appointments, not being a morning person. Treatment was about 10 minutes, the only delay was that if they had got behind during the day, by six in the evening they could be running an hour late.

Dave

User

Posted 04 Nov 2021 at 17:26

Hello Dave

Thats completely the reverse for me a full bladder every time. I agree I am not a morning person either but decided to get it over with to have the rest of the day by myself also parking is easier.

Regards

Pete

User

Posted 04 Nov 2021 at 23:07

Pete,

thanks for your posts, particularly for the human element you include.

It sounds to me as though your treatment is very "by the book". I had the full bladder system too, though it was largely left up to the patient to manage. I worked out a technique in the end. 3 cups of water is fine if they keep on schedule but it does give a "peak" bladder after about 30 minutes. One thing I found that did not work was exercising a few hours before RT. Trying to get the hydration right after that is a nightmare.

Could I ask you a question please? Is the RT device stationary above your prostate when you're being zapped?

Jules

User

Posted 04 Nov 2021 at 23:38

I think Andy62 posted about the full vs empty bladder policy. It depends on the hospital and also where they are aiming the RT. I guess if the the cancer is further from the bladder it is less critical that it is full.

To answer Jules question: I was treated with this.

https://www.elekta.com/radiotherapy/treatment-delivery-systems/versa-hd/

The x-ray source is stationary for each blast of x-rays which takes about 10 seconds, it is then moved about 1/5 of a circle around the body and re calibrated this takes about a minute and another 10 second dose is given. This happens five times, so sometimes it is above you sometimes below you sometimes to the side. As your prostate is at the centre of the circle it is being hit by every dose, but the rest of you body in the pelvic region is only getting about 1/5 of a dose.

Dave

User

Posted 05 Nov 2021 at 02:25

Thanks Dave, clearly all the LINACs look similar but the way they're being used differs.

User

Posted 05 Nov 2021 at 08:11

Indeed. When I had my treatment it was a constant rotation. It went around about 270 degrees of a circle, first one way, and then the other way. The oncologist will devise a beam profile that's specific to you - it's not "one size fits all".

Cheers,

Chris

User

Posted 05 Nov 2021 at 11:19

Hello Jules,

No my experience is the same as Chris's reply below the machine rotates three times around the body but only delivers the the Radiotherapy treatment on the last rotation. The first two rotations allow them to scan and plan and set the area to be treated and then they set a template on top of todays scanned image so that they can hit exactly the same spot every day. Before treatment started I had to go in for a planning session and they took an 'image' at that time of the area that they wanted to treat and its that 'original image' that they now use as a template to superimpose over todays scan of my body so they hit the right area if that makes sense.

Regards

Peter

User

Posted 05 Nov 2021 at 11:22

My 33 days with cancer

Day 5

Paul must have more intensive Radiotherapy treatment because he is so far gone hence his treatment is applied in only 10 sessions whereas mine is applied more gently over 33. I’ll take the 33.

THE MESSAGE

How am I feeling?

So out of 10, 10 being really bad I’d say I’m at a 1.25 at the moment and the 1 is automatically added because I’m feeling p****d off about having it in the first place.

#pr

User

Posted 06 Nov 2021 at 07:28

good read peter been through 37 rounds off radiotherapy at the same hospital they are very good but any off us can turn grey as you speak at anytime good luck to anyone battling any type off cancer hopefully you treatment will go as smooth as mine so far so good but know anything could change so make the most off the good days 👍

User

Posted 06 Nov 2021 at 17:23

Thanks Gary I want you to know that I agree with everything you say. Good luck to you to. Lets enjoy life to the full certainly concentrates the mind to that.

Regards

Pete

User

Posted 06 Nov 2021 at 17:26

My 33 days with cancer

Day 6

04.51 woken up to (how should I describe it?) a slight twinge above the willy didn’t last long wouldn’t like it to get worse though.

Just got back from the hospital and I have a little bit of discomfort around the prostate area heavy like you need to go for a pee badly but nothing much and not enough to increase my ‘How am I feeling rating level’ above 1.25 out of 10.

Do you all know where the prostate sits in the body? well I have a tattoo (one of three) which sits exactly an inch above the top of my willy or 25mm for any younger people reading this, so you can see where it is positioned in relation to your own body. I must admit I hadn’t realised the prostate was positioned so low.

I also have a tattoo positioned on each side of my hip’s. The tattoos allow the Radiographer to line me up in the same position each day on the table ready for my treatment to be applied.

Andrew was in this morning. How should I describe Andrew to you? well let’s say he is a little ‘rotund’ or in other words ‘a little bit chubby’ Andrews not a ‘grey’ he’s on 6 out of 20 sessions.

Now I mentioned yesterday that I am quite an inquisitive type of guy and I had to really fight back the urge to ask him how the hell he applies his enema because I’m damn sure he can’t reach by himself his arms aren’t long enough. “Does someone help you?” I was dying to ask, “Who helps you?” I really wanted to know. Someone must love him.

Got it right this morning managed it first time no trapped wind so was in and out like the SAS.

Think I have mentioned this before, but it can take me anywhere between 40min and an hour to get to the hospital and once at the hospital you must immediately empty your bladder and then drink 3 glasses of water directly before the radiography is applied. This is what I had to do when I was at the ‘planning stage’ I had an initial scan from which they made plans for my actual treatment, and you must as far as possible replicate the amount of water in your bladder each day. Herein lies the problem because since suffering from Prostate cancer I have to go to the toilet a lot and it’s now much harder to hold it than it was before the removal of my prostate. Consequently, it’s now impossible to make it back home without needing a pee and I have become an expert at spotting places to stop and have a pee. They are rated Piss stops 1,2 and 3 depending on the distance I can reach before being forced out of the car and believe me you don’t want reach 3 unless it absolutely cannot be avoided.

Becoming good mates with Shaun, Shaun the sheep, he stares a bit but told him to get over it.

How am I feeling?

Hmm a little bit tired and slight ache around my front / waist area at the moment. It’s a long week. One more day then weekend off. Feels like a long way to go.

Still at 1.25 out of 10

User

Posted 07 Nov 2021 at 13:54

I don't know if the tattoos are exactly lined up on the prostate? My guess was that the tattoos were put on a reasonably flat piece of skin, and then they measured the offset to the prostate. So each radiotherapy session they aim for the tattoos and then tweak the aim by exactly Xmm or whatever the planning scan suggested. A bit like a Hollywood film where the sniper is about to shoot the president. He always tweaks the sites just before taking the shot, and then Dirty Harry comes and saves the day.

Dave

User

Posted 07 Nov 2021 at 16:59

I agree, Dave. My central tattoo was much higher up. They're just fixed alignment points. Mine certainly wasn't over my prostate!

Cheers,

Chris

User

Posted 09 Nov 2021 at 20:47

Hopefully you are ok peter you have gone quiet gaz 🤔

User

Posted 10 Nov 2021 at 16:22

My 33 Days with Cancer

Day 7

TGI FRIDAY. Pleased its Friday the end of my first full week of treatment because it’s felt like a long slog tbh. I really feel like I need a rest from it all for a couple of days and can’t wait for a lie in.

Ian made a comment yesterday asking why if I have had my Cancerous Prostate removed am I still being treated for cancer, great point I thought worthy of further explanation. I agreed to having my Prostate removed some four and a half years ago with the consultants promise at the time that he could ‘cure me’…It didn’t work as shortly afterwards my PSA (Prostate Specific Antigen) levels began to rise again.

PSA is a protein given off by the Cancer itself into the blood stream as it grows and they can measure the levels of PSA in your blood via a blood sample taken from your arm, which in turn can be a very good indicator of whether Cancer is present or in fact growing over a given period of time... I won’t go into detail here it’s too bigger subject, but a doctor will tell you that a raised PSA doesn’t necessarily mean that you have Prostate Cancer but knowing what I know about it coupled with my experiences if your PSA is raised its not a good sign.

So, this meant that the Cancer had somehow escaped my Prostate before they took it out. I have a theory about how and why this happened which I may talk about later. Apparently, men who ride bikes a lot can see a rise in their PSA levels.

Now it gets interesting because guess what they cannot tell you where in the body the damaged cancer cells are now.

Let’s just step back here a moment in simple terms Cancer is damaged cells in your body they grow and attack and kill healthy cells around them hence Cancer grows. The bad cells can be transported around the blood stream via the hundreds of lymph nodes deep inside your body. Anyway, Prostate cancer is particularly nasty as it turns into bone Cancer….and you don’t want that!!! This fact leading to my original decision to have it removed.

The thing is that I could have opted to have Radiotherapy treatment ‘instead’ of having my Prostate removed but I was warned that I would not be able to have it removed after Radiotherapy treatment if anything went wrong as the treatment itself ‘welds’ the Prostate to the bladder and the Prostate then cannot subsequently be removed. Having it removed first would effectively give me a second chance by being able to have Radiotherapy if anything went wrong which it did hence finding ourselves where we are today.

Radiotherapy can only be given once so I cannot go back and have a second go at this.

So, they are ‘guessing’ that the bad cancer cells are still there sitting in the area from where the Prostate was removed called the ‘Prostate bed’ situated one inch above my Willy and this is the area that they are now targeting with the Radiotherapy treatment. I won’t know if it’s been successful until the 11th January seems a long time to wait but I am able to put it out of my mind no point worrying about something that hasn’t happened.

The Radiotherapy cannot target the bad cells directly instead they ‘blast around’ the area in the hope of finding and hitting them which means that they also end up killing the good cells that surround them which in turn cause the side effects.

Should be successful….. unless of course the buggers moved!

How am I feeling

Ok still 1.25 /10 on the scale

User

Posted 10 Nov 2021 at 16:49

To clarify, Peter, what RT actually does is to damage the DNA of all the cells in the target area. Healthy cells can repair their DNA, but the repair mechanism is usually faulty in cancer cells, so eventually the cancer cells die. That why it can take up to 18 months after RT finishes for your PSA to reach its lowest level.

Prostate cancer doesn't "turn into" bone cancer. Prostate cancer can metastasise in both bones and soft tissues, but it's still prostate cancer.

Best wishes,

Chris

User

Posted 10 Nov 2021 at 18:00

Thanks for the clarification Chris appreciate that whatever it is I don't want it😂

Regards

Pete

User

Posted 10 Nov 2021 at 19:21

"Apparently, men who ride bikes a lot can see a rise in their PSA levels."

It is true that a bit of European research showed that professional cyclists can have higher PSA readings than other men. However, there appeared to be no increased risk of these men getting prostate cancer. This led to NICE guidance that urologists should take into account that a man is a professional cyclist before deciding to do a biopsy.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 10 Nov 2021 at 20:19

Peter

I had the "very educated guess" conversation, possibly by the same oncologist. Have a look at my profile.

Thanks Chris

User

Posted 11 Nov 2021 at 19:37

My 33 Days with Cancer

Day 8

Here we go again!... Start of week 2. Remember what Tony the Radiographer said? Problems normally start to show / develop after 7-10 days well today is day 8 so I am starting the week a little apprehensive as to how things might develop from here and what the immediate future may hold.

Now they get you to sign a ‘disclaimer’ document before treatment commences confirming that you understand that it’s likely that you will suffer from, (and this is all in their words) ‘immediate’ and ‘acute’ side effects…. now let’s hold on here a minute why have they felt it necessary to include the word ‘acute’ in the sentence because the word ‘acute’ to me means it’s going to really hurt as in ‘acute tooth ache” as opposed to “my tooth is playing up a bit” I am not great with pain; and this tells me that ‘I am going to suffer’ from ‘immediate and ACUTE pain’ no doubt about it… hence my apprehension.

Thought you might be interested in knowing what’s on the list of possible ‘acute’ suffering.

Nausea, diarrhoea, tenesmus? which basically translates as a ‘pains in the arse’ Bleeding from the anus or bum, bleeding from the penis or Willy, something called ‘urinary frequency bladder operation’ which basically translates to ‘pissing like a racehorse’, bladder urgency, skin soreness in the area being treated. Impotence…a bonus…scarring of the bowel and or bladder with possibility of long-term bleeding, Incontinence…great!. Not to mention the fact that the Radiotherapy can give you secondary cancers.

At the end of all this they have a statement that reads ‘confirm the patient is ‘happy to proceed’….Sign here!

Met Patrick today lovely old man aged 74 a jolly little rotund person. It’s fascinating because I find that nearly everyone I meet are more than happy to openly discuss how cancer is affecting their lives. He has stage 3 Prostate cancer, and his Prostate is still in place. The reason they don’t attempt to remove it from someone so old may be that the cancer is no longer contained within the Prostate or for whatever other reason depending on that individuals’ circumstances, but the main reason I think is because there is a cut of point when you are just considered too old for such a big operation.

Anyway, Patrick has made his mind up “if this doesn’t work, I won’t be having further treatment, they will want me to have chemotherapy, but I will refuse it,” his thoughts are that he doesn’t want to go through Chemo which he thinks will destroy his quality of life, so he is going for quality over quantity.

He told me that he is not ready to go yet but that he is not afraid of death and that “we all die every night” ‘meaning that when you lose consciousness through sleep that’s what deaths like you don’t know you are asleep as you won’t know when you are dead like you didn’t know life before you were born. I liked that.

I am finding it amazing what in depth personal conversations you can get into with people you have never met before in just a 10–15-minute period whilst waiting for your turn on the table.

Left wondering what choice I would make if I found myself in the same position. Hope I meet him again he was an interesting character.

How am I feeling?

Had a good weekend felt great to have a rest from it all, but at times felt slightly tired had to have a ‘nod’ during the day but immediately felt better after. I really think this is more from the fact that in the last two nights I have got up to go to the toilet 5 and 6 times respectively hoping this is just a blip but might be kidding myself here.

Aware of a dull ache in groin area most of the time especially immediately after treatment

Anyway, I am still at 1.25.

Peter

#prostatecancer

User

Posted 11 Nov 2021 at 19:59

An "acute" condition in medical parlance is one which comes on fairly suddenly, as opposed to a "chronic" condition which develops over a long period of time.

"Tenesmus", if you're interested, is the medical name for the feeling that you need to move your bowels even when there's nothing there to actually pass. It's a common side-effect of RT but should go away pretty quickly too.

I had a chatty oncologist who delighted in explaining all this stuff to me 😁.

Cheers,

Chris

User

Posted 11 Nov 2021 at 23:39

Originally Posted by: Online Community Member

Consider getting a piss bottle. That is to say a bottle you can piss in without having to get all the way out of bed and to the toilet. You will get a better night's sleep if you don't have to walk all the way to the toilet.

1 litre innocent smoothie is the gold standard, wide neck and secure cap. Get the strawberry one, if you get the orange one someone may get a shock when they innocently drink the orange liquid from the bottle they thought contained orange juice.😝

Edited by member 11 Nov 2021 at 23:41 | Reason: Not specified

Dave

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

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