My Journey through HT and RT

User

Posted 24 Feb 2023 at 18:54

Meeting with the Onco went well today. MRI scan was good and he is happy for me to start RT after another CT planning scan….it’s been 2 months since the last one and he wants to check that nothings moved! Then ASAP start 20 sessions of RT to the Prostate and Seminal Vesicles.

He explained that my plumbing was just in the wrong place for whole pelvic RT and he showed me the scans to help me understand. There is simply too much risk of permanent damage to the bowel. I find it kind of reassuring that the Oncologist is looking after my best interests. The chance of reoccurrence is slightly higher by not having the whole pelvic area treated, but the outcome is more or less the same and the risk of damage far outweighs the risk of reoccurrence.

he wasn’t too bothered about my slowdown in PSA results. He said that some men have a naturally higher PSA level than others. Ideally it would be below 1 but he’s happy enough with 1.3.

He’s going to try and get the CT scan done ASAP and the RT started as soon after as possible.

Result!😊

This certainly is an ‘interesting’ journey…or as someone else said ‘ordeal’!

User

Posted 24 Feb 2023 at 19:45

Great news Derek, hopefully now the end is in sight, well you know what I mean after waiting this long for the RT to start. Sounds like you have got a good oncologist and good that they are explaining everything.

Best of luck with the RT i'm sure it'll be a walk in the park😉

User

Posted 24 Feb 2023 at 20:13

Glad to hear you've got a definite plan in place now. Best of luck for the RT. I found it all pretty tolerable.

All the best,

Chris

User

Posted 28 Feb 2023 at 11:31

All the best of luck. RT is a bit of an endurance - but there will be a longer life at the end of it.

User

Posted 28 Feb 2023 at 13:46

Hi Dereck

Didn't find RT too much of a problem, 60 gray in 20 fractions to prostate and SVs. Worst part was the minienema and pint of water at home before 30min drive to Guildford. Appointment usually on time but much wriggling and a near thing sometimes! Some bowel problems towards the end of treatment and for a week or so after. I would rather have RT / HT than prostatectomy

Best of luck to you and to us all. Hope you have pretty radiographers

Peternigel

User

Posted 28 Feb 2023 at 16:19

Thanks everyone for your good wishes, just want to get it over with.

PeterNigel, I see you have the same staging as me but higher Gleason. Good to hear from someone else who’s had the same treatment. I’m actually going to go to the hospital 30 mins early to use the enema and drink the water. It should take me 30mins to drive in but you can never guarantee with traffic into Edinburgh and I don’t want to get caught short!

I didn’t have a choice of treatment but TBH I am ok about having HT/RT. I’m surprised you weren’t onHT for 2 years following RT? I will be according to the Onco. The 3rd prostap injection (every 3 months) was the worst for me with aching hips and lower back. I’m doing a lot of walking, cycling and going to the gym to try and keep my muscles as good as possible. According to my magic scales I have the body of a 51 year old but I don’t feel like it at times 🤣🤣🤣🤣

User

Posted 28 Feb 2023 at 19:21

Hi Decho

The only time fortunately, I got seriously caught short was when I went for my bone scan at Guildford. There was an almighty traffic jam on the A3 and I was 3 hours late with wet car seat ugh!. I think everyone else was late including the courier with the Technetium isotope . Interesting walkabout as I visited my old place of work just up the road. Elder daughter used to live in Edinburgh so I know about the traffic.

My onco was adamant I should stop zolly after 6 mo. Testosterone still zilch so aches snd pains, zero libido etc. Things will improve I hope.

Petrrnigel

User

Posted 14 Mar 2023 at 20:10

Well, 2nd CT Planning Scan today, nurses were quite surprised that I had already had one back in December as it didn’t seem to appear in any notes. Anyway it meant that I didn’t need another set of tattoos and helped them line me up.
However, as with many things on this journey(ordeal!) things didn’t go according to plan.I completed all the pre scan ‘niceties’ and was lying in the table listening to the whirring of all the machinery but it seemed to go on for a long time. Then, everything stopped and the nurse told me they couldn’t go ahead because I had too much gas. They told me to go for a walk and try and break wind. I went for the walk but nothing happened partly because I thought I might wet myself if I tried to ‘push one out!’
so, back to square one another enema and then more water and another 30 minute wait.fortunately the enema did its job which included a rather loud fart. All was good when I went back in and the scan was done.

Moral of the story…..avoid broccoli!!!! I had that and green beans with my chicken for tea last night!

So, next stop RT on the 5th April….hopefully🤞🤞🤞🤞🤞🤞🤞🤞🤞 In the meantime another trip out to Fuerteventura for some sunshine🌞🌞🌞🌞

User

Posted 05 Apr 2023 at 18:58

Well, first RT session today and no Walk of Shame. As has been said by many people the staff were wonderful. It’s like a well oiled machine .

whilst waiting on my bladder filling I started to write a little poem which I thought I’d share with you…

If y’er o’er fifty and got a Willy?
Get yersel’ tested and don’t be so silly
Prostate Cancer IS a killer
But if caught early it’s not such a thriller.

Many men don’t have symptoms and that’s a fact
But if you do it’s time to act
And if at night you’re up lots to pee
That’s a warning sign for the doctor to see

You’ll get a finger up your bum
But don’t worry the doc won’t use his thumb!
He’ll check for your size(of your prostate!🤣🤣🤣) and also a lump
It only last seconds so don’t take the hump!

It’s then a blood test that you’ll need
So that your PSA level is there to read
Don’t be alarmed if it’s higher than norm
It’s not the most reliable test in form.

If it’s bad news you’ll be sent for more tests.
You’ll become one of NHS’s many guests
MRI scans and biopsies are next to be done
You’ve started a ‘journey’ you’ll wish you’d not come

The results will determine your options for cure
When that comes you’ll feel better for sure.
But it’s you that must choose which route to take
I won’t kid you, it’s a difficult one to make

If you’re young (ish😊), healthy and spread it’s not done.
You can have it whipped out…and your prostate is gone!
It’s a good option for those that can to strive,
But other options can equally keep you alive.

For me options were few because my diagnosis was late
So HT(hormone therapy) and RT(Radiotherapy) are to be my fate
I should have got tested sooner but you know….COVID😟
So when I found out I had cancer I was f…ing livid!😡

HT for 3 years is what’s required for me,
And a 3 monthly jab in the belly it’s to be.
It has some real fun effects I wouldn’t want to own
As it stops your bits making testosterone.

Enjoy your libido while you can.
Cos with HT thoughts of nookie go down the pan!
It’s really quite weird when you have no desire
Instead a nice Costa coffee is what you require😊

20 sessions of RT started today
And I’m so bloody relieved it’s underway.
My first went well with NO ‘walk of shame’ (if you’ve got too much gas they make you go for a walk to try and fart!) 🤣🤣🤣🤣
I avoided brocoli last night as it’s normally to blame.

Then checks for years after with anxiety each time.
That my curative path has kept me in line. 🤞🤞🤞
But there’s life after Cancer and I can see a future ahead
When finally I can put this awful disease to bed

As my big bruv said to me, it’s what you need,
To ‘not let this define you’, very wise words indeed
So I get on with my life each and every day
And have lots of fun and laughter on the way

I’ve got so many people to thank, no less
Than Family, Friends, Maggie’s and the NHS
They’ve been such a support with all they’ve done
Without them this ordeal would not be much fun

So I do hope this poem finds you well.
Men Take heed of my words to avoid this hell
If it can help just save even one life
I’ll be happy and not cause you any more strife

User

Posted 05 Apr 2023 at 19:09

Good Poem !

I hope your keeping away from the "Windy" food.

User

Posted 06 Apr 2023 at 13:48

Very good Decho. Hope the next 19 sessions go well.

Ido4

User

Posted 06 Apr 2023 at 17:23

Hi Decho

Well, one down, 19 to go. Does your centre have a bell to ring after your final session?

Ring this bell

Three times Well

It's call to clearly say

My treatments done

My course is run

I'm on my way

Everyone plus the treatment team claps an cheers on your way out! I remarked that hopefully we will not meet in similar circumstances. I found it quite emotional after seeing the team daily for a month plus all the people in the waiting room you chat to regularly.

Chat again soon

Peternigel

User

Posted 06 Apr 2023 at 17:27

Busy day today…4th HT Jab and then onto Western for RT. Good news was that my PSA has finally dropped to below 1…it’s now 0.9. I’m pleased about this.

I’m so glad I was wearing shorts to my RT session. I got the time wrong by 15 mins so instead of having to wait 30 mins after drinking my water for my RT to start it was 45mins….and then there was a 10 minute delay. I didn’t think I was going to make it and lying in the table I really thought I was going to embarrass myself. Made it though and a quick dash to the toilet…fortunately there was nobody in it waiting for their enema to work.🤣🤣🤣

So, a valuable lesson learned….my RT times are all different so I’ll be double checking BEFORE I do the fill your bladder bit! I’ll also be wearing my shorts from now on no matter what the weather!

User

Posted 06 Apr 2023 at 17:52

Peternigel,

We must be miserable here in Scotland because there’s no sign of any bell or anything like that at the Western General🤣🤣🤣. I know I’m going to be emotional on my last session but will have to make do with a Huge hug from my wonderfully supportive wife🤗

User

Posted 15 Apr 2023 at 12:01

Well, first week done (with a break for Easter) so 6 sessions and feeling so energised. Staff are wonderful, brand new zapper at the Western, taken on time or early every day and in and out in 5 mins. I don’t think they do a CT scan every day, only if the X-ray shows something that needs it. And as I live in Scotland not affected by strikes, even the car park is free with a very friendly attendant guiding you to a place.

Got into a nice little routine on treatment days which so far has worked a treat, brisk walk morning(gets rid of any gas😊) followed by a nice coffee. Keep busy before a Light lunch then Treatment early afternoon, followed by another walk when I come home….doing 10k+ steps a day.. Drinking lots of water timed carefully and cranberry.

I know after 10 days things normally get a bit more interesting but I’ll cross that bridge when I come to it and I’ve got the Tenas at the ready!

User

Posted 15 Apr 2023 at 12:57

You have gold markers, so they should normally be able to just do a pair of X-rays at right angles to accurately locate the prostate. A daily cone beam CT scan on the LINAC is for patients who don't have the gold markers.

User

Posted 15 Apr 2023 at 20:06

Thanks Andy, thats good to know, didn’t realise that. I’ve learned so much from the knowledge of others on this forum.

User

Posted 16 Apr 2023 at 13:48

Good luck with the rest of the treatment Decho and thanks for all the routine tips. Your posts have given me a lot more confidence about going through what's to come. Sounds like you have a really good team looking after you up there.

Ian

User

Posted 16 Apr 2023 at 14:03

Many thanks for your continuing journal. I'm a couple of months behind you in treatment and it's reassuring reading.

User

Posted 16 Apr 2023 at 16:06

Hi Ian086 and Robin Hood,

it’s been an incredibly emotional and difficult 12 months for me with lots of ups and downs….but I am sure you both know exactly what I mean! Without this forum and Maggies I would have really struggled to get through this. At first I could not talk to anyone except close family about my fears but now I am happy to and share my experiences with everyone. Maggies Mens Cancer Support Group at the Vic in Kirkcaldy have just been so instrumental in helping me to talk openly about things…I was very reluctant to join because I thought it would be a bunch of guys sitting around being thoroughly miserable, but it was exactly the opposite, we actually have quite a laugh at ourselves…and if someone is feeling down or emotional we can all help support them. I really look forward to our meetings and am even going to try and change my zapping time on Friday just so I can attend. I get so much from the meetings and always come out feeling better.

There are people on this forum who are incredibly knowledgable and have helped enormously, so if I can share my experience to help someone else then I am so pleased.

I’m not kidding myself that the next 3 weeks are going to be easy, but I’m going in with a positive attitude and going to try and keep active as I think it’s so important…..just back from a cycle ride stopping at Aberdour Beach, Sands Cafe for tea and cake and sitting outside watching the people on the beach was wonderful and I feel so alive!

I will keep you posted good or bad(I promise!) but good luck to both of you when your time comes around.

User

Posted 17 Apr 2023 at 12:53

Good luck with the rest of your treatment Decho. I agree the staff at the Western General are amazing. I had a daily cone scan because I had salvage radiotherapy after prostatectomy but the fiducial markers help a lot when you still have a prostate. I found I got very tired at the end of each week of treatment especially as I clocked up the sessions. I still drove in and out though and like you was very appreciative of the treatment car park with attendant. Best of luck to you.

Ido4

User

Posted 21 Apr 2023 at 21:22

Second week down, 11 sessions in total and still going well. Also had a meeting with the clinical nurse to check on how it was going which was nice. Enemas finished now although I didn’t really mind them and it gets rid of any excess gas. the staff are just wonderful, will do anything to accommodate you and so supportive and friendly.
My energy levels were down a little this week but still managing my 10k+ steps a day. Going out on my bike tomorrow so will see how that goes. Still Managing to keep to my daily routine which was different today because I changed my appointment time to the morning to allow me to attend my Cancer support Group.
I went to my Maggies Mens Cancer Group this afternoon which always helps me keep motivated.
No unpleasant side effects as yet, perhaps a little more wind after treatment. I’ve bought some pads just in case it’s a little more than wind when I’m out exercising!

Next week going to be more challenging I guess but onwards and upwards and I’m on the homeward stretch!

User

Posted 23 Apr 2023 at 12:11

Do you have any advice to give about your diet whilst in RT.

I have conflicting suggestions about adopting a low fibre diet to reduce gas for the duration of the treatment, but, I have advice about not changing my diet dramatically to do the same.

I eat a high fibre diet: loads of veg, grains, wholemeal pasta, beans and meat etc. and I'm not particularly gassy.

Any advice?

User

Posted 23 Apr 2023 at 12:31

You should follow the advice of your own radiotherapy team - that will be based on your specific internal plumbing and the preferences of your oncologist.

Some hospitals issue a very strict diet sheet, others take more of a wait and see approach depending on how gassy you are. Most have an absolutely no alcohol rule. My husband was given a strict low fibre diet to follow but our hospital doesn't give men daily enemas whereas many do.

Edited by member 23 Apr 2023 at 12:36 | Reason: Not specified

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

User

Posted 23 Apr 2023 at 15:47

Hi Robin Hood,

As Lyn says every hospital seems to offer its own advice. I was told just to eat my normal diet as they feel that changing your diet for treatment may cause a change in bowel habits, which they don’t really want. I wasn’t told anything about avoiding alcohol and have had a glass of wine on Friday and Saturday evenings, but never the evening before treatment……I have a gin instead!(lol, only kidding!)

Ask at your CT Planning Scan, they will keep you right

Western General in Edinburgh ask you to use an enema during your CT planning scan and then during the first 10 sessions. They say that after that you won’t need them!

And just today I learned a very valuable lesson….YOU DONT NEED THEM!

I’ve been keeping a the same routine daily with walking, and one coffee WITH caffeine(I know I shouldn’t but it gives me a buzz).,I usually incorporate my morning coffee during my walk. Today yards from my front door a had the urge for a bowel movement. I thought….no problem, just get in the house quick and all will be ok. WRONG! I had absolutely NO control over it and ended up…well I think you can guess!!!!. Now, I could have got very upset about this but I just laughed (as I’ve learned to do during this ordeal) , cleaned up the mess with help if my VERY understanding wife.

So,

1. No more caffeine for foreseeable future!

2. I’m going to eat less fibre but will confirm this with my RT team tomorrow….they are just so helpful

3. If I’m going out for a walk I will wear pads. I couldn’t find a Tena Men that would really do the job but the Attend F6(available on Amazon). This goes from Front to back and am sure it will hold enough should I have another accident from either end. You may feel a little embarrassed at having to put one of these on the first time but what the hell? They are not noticeable and will do the job!

Oh and I’ve got a red raw arse which I will be asking them about too.

But this hasn’t stopped me….I feel great and still bursting with energy even without the caffeine! Would be going out on my bike this afternoon if I didn’t have such a tender rear end🤣🤣🤣

I hope some of this helps…..and good luck with your treatment!

User

Posted 23 Apr 2023 at 17:51

Decho, good story!

I followed the advice to keep off caffeine during my RT, but did find I had become a lot more sensitive to its effects when I finished RT. Months later and I still need to be careful not to overdo coffee (happily tea is not a problem).

User

Posted 23 Apr 2023 at 18:12

J-B, what about decaf coffee? Is it the Caffeine or the coffee, I think it’s the Caffeine. I have found some nice blends of decaf. I also always drink decaf tea but I find that irritates my bladder more than decaf coffee.

User

Posted 23 Apr 2023 at 18:59

My RT procedure including mini enemas each time. I was advised to more or less stick to normal diet as, as mentioned above, a change in diet may affect things, these were spoken by the RT team. I dont drink so that wasnt mentioned. I drink far too much coffee, I wasnt advised to cut down, thankfully. As others say I'm sure the RT team will advise.

Peter

User

Posted 24 Apr 2023 at 09:52

Originally Posted by: Online Community Member

Yorkshire tea has by far the best decaff flavour in my opinion. Shop around for best price.

User

Posted 24 Apr 2023 at 21:10

Decho, I avoided coffee of all sorts during RT, but have used decaff coffee as a way of avoiding issues with urinary continence. I think I treated myself to one mug of decaff tea per day during RT.

Bob, I can confirm the recommendion of Yorkshire Tea decaff blend. I found drinkable decaff coffee a tougher problem, the best I have found so far (ground coffee) is Tesco Italian Style. However you can get a decent coffee flavour if you buy a decaff in Italy, I don't know what they use or whether you can buy it here.

User

Posted 24 Apr 2023 at 22:05

Lavazza Decaf Coffee is good, we use the modo mio pods. Would love a Sage or Jura machine but the cost😱😱😱

Its Scottish Blend tea up here!

User

Posted 25 Apr 2023 at 07:44

Originally Posted by: Online Community Member

Lavazza Decaf Coffee is good, we use the modo mio pods. Would love a Sage or Jura machine but the cost😱😱😱
Its Scottish Blend tea up here!

A blend of Haggis & Midge? 😅

User

Posted 25 Apr 2023 at 08:21

Originally Posted by: Online Community Member

A blend of Haggis & Midge? 😅

Absolutely! It tastes lovely with a deep fried mars bar from the chippy.

it must however be drunk wearing a kilt and sporran!😉😉

User

Posted 25 Apr 2023 at 13:43

Decho, Lavazza was the decaff coffee I preferred before discovering the Tesco blend. But we make coffee simply in a cafetiere, the Lavazza probably works better with a proper machine.

User

Posted 25 Apr 2023 at 14:01

Great thread Decho. Your profile finishes at 8th December. It would be good to put a link to this thread on your profile. All the best, Peter

User

Posted 25 Apr 2023 at 15:52

Originally Posted by: Online Community Member

Great thread Decho. Your profile finishes at 8th December. It would be good to put a link to this thread on your profile. All the best, Peter

thanks Peter, yes good idea I will put a link in.

User

Posted 25 Apr 2023 at 16:08

Hi Decho

You must be getting to the end of your RT. Regarding caffeine and alcohol, Royal Surrey said no, no even to decaff tea or coffee. I had to make do with the horrid Red Bush "tea" from South Africa. No alcohol at all. Have made up for it since!

Still waiting for the effects of HT to disappear. Next bloods in June. Let's hope that PSA is still low and testosterone has increased. Perhaps fatigue an aches and pains will then go.

Good luck to us all.

Peternigel

User

Posted 25 Apr 2023 at 18:29

Hi Peternigel,

Getting there, 13 done, 7 to go!

Isn’t it strange how different hospitals recommend different diets! I had my clinic appointment today to get some cream for my raw rear end and also some fybogel. I got the diet sheet from her which recommends to avoid alcohol and strong caffeinated drinks. Also gives information on what you should and shouldn’t eat. TBH though so far my normal diet seems to be working fine for me, my motions are very soft but not diarrhoea, so I’m kind of reluctant to change it in case I go the other way round. I still feel really good, energy levels back up to what they were, walking 10-15k steps a day, and can’t wait to get back out on my ebike once I am a little less tender down below!

Derek

User

Posted 28 Apr 2023 at 19:45

16 down and 4 to go.

This journey has had its many ups and downs but today was one of the most traumatic. It was silly really because it was no big deal to anybody…except me!

Throughout the RT I’ve kept to the same daily routine which has worked very well for me. Most of my appointments have been in mid-afternoon, even though at different times. However todays was at 1pm…and its that time all next week.

I wanted to attend the weekly Maggies Men’s Cancer Support Group as it was an important meeting for the future of the Group, and I wanted to have a say. So off I went at 9am, stopped off for my coffee, attended the meeting which was another excellent meeting, had another DECAF tea during the meeting. I then set off for the Western which took an hour…no problems.

I followed my usual routine at the hospital, going to the loo to empty my bladder then drinking my 3 cups of water finishing 35 mins(I thought they might be early) before my time. As it got nearer to my appointment time of 1pm I could tell I was struggling with my bladder control…I never had this issue before. The radiographer called me in just before 1 and I told her I was struggling but thought I would be ok. She said they would hurry things along which they did…the staff are absolutely wonderful. However as the machine started I had a severe flush and was struggling to hold onto it. I tried to relax but is was very difficult. On the machines last pass I felt I had no option but to call out I was really struggling. The staff were great, encouraging me and even counting me down to the end of treatment. In the end though I couldn’t hold on and wet myself, not majorly but enough. Again the staff were brilliant and rushed in with a bowl for me to use whilst I was still six foot up in the air. They then lowered me down and helped me off the table making sure I was able to relieve myself properly.

I was most apologetic! They were most apologetic for putting me through it, and suggested next week to reduce my wait to 20 minutes for the final 4 session which I was pleased about.

We wished each other a lovely weekend and I departed feeling fine with a clean pair of underwear…good tip always take one with you!

I got in the car to drive home and immediately felt totally traumatised by what had happened…..you’re lying flat out on a table 6 foot in the air trying to keep as still as possible, worrying that if you move you might get zapped in the wrong place, but also desperately needing to pee! This was definitely the worst experience of the treatment so far and it’s taken me all afternoon to get over it. Now, it may sound silly but when somebody says to you don’t worry I’m sure it happens all the time you really want to punch them in the face, Fortunately my wife is so understanding and supportive and listened to me carefully when I got home and sympathised with me.

Next week I will be wearing pads just in case…

Anyway that’s the only negative, other than that feeling great, energy levels picked up again and still doing my 10k+ steps a day and keeping very active…even though I felt very sorry for myself this afternoon. I’ve had one other accident when I’ve been out walking but was prepared for it this time, just laughed it off and did the moonwalk home! Mornings are the problem for this, later in the day no problem at all.

Roll on next Thursday and ringing that 🛎️. Oops, sorry forgot Western don’t have one so I will have to ring it in my head!

Apologies for the long story but I have always wanted to document the bad as well as the good on this ‘journey’ in the hope it might help others.

Derek

User

Posted 28 Apr 2023 at 20:21

Hi Decho,

Yes that bladder control is the thing that worries me the most if I ever need it. They're saying 3 glasses 20 minutes before? These are standard sized glasses, not pints :) If I need to have it I'll try experimenting I can definitely hold 2 large mugs of tea for over an hour.

Six feet in the air? Haven't heard of that one before. Is that normal?

I got a letter today from the charity that supports Preston cancer centre and they're saying they've just got Surface Guided Radiotherapy which they're pretty chuffed about. Not sure what it is but not many have it they say, just 15.

Keep up the reporting. Peter

User

Posted 28 Apr 2023 at 20:50

Hi Peter

This is the first time I‘ve had any problems with bladder control. I think you’ll be fine if it’s 20mins, the extra 10mins makes a difference, Just make sure you get your timing right and check whether they’re on time.

Yes, just normal size plastic cups maybe 7 oz.

Maybe 6ft high is a wee bit of an exaggeration, but when you get on the table and lie down it does get raised up maybe a couple of feet.

I’ve never really noticed this because you’re still lying flat on the table when they lower you back down….except for today when I was sitting up whilst still raised and it felt like it!

As I said the staff are wonderful and say that if your struggling you should tell them beforehand and they’ll try and fit you in early,

It’s actually gone a lot better than I thought except for the hiccup today and I’m sure you’ll be fine.

Derek

User

Posted 28 Apr 2023 at 22:40

I remember the last 3 or 4 of my 20 sessions when I sailed very close to the wind with 'bladder control' and I had to let a bit out once or twice before the treatment ... like you say best to try and find out when your approx. due in and and adjust your intake accordingly so your not hanging on too long, nothing worse than being absolutely desperate for a pee is there !. Good Luck for next week Dech. 🤞 🛎️

User

Posted 29 Apr 2023 at 09:35

On the several occasions I have been desperate for a pee waiting to be zapped, one of the team said to let a bit out and we will do an ultrasound scan of your bladder to see if it is still full enough. Much relief! Otherwise drink half a cup of water and wait 15 mins a d we will check again.

Very understanding.

Peternigel

User

Posted 29 Apr 2023 at 18:23

Thanks Decho,

Your posts are always informative and helpful and I appreciate you telling it "like it is". I can understand your distress at your situation. I can't imagine how difficult it must be to try to hold absolutely still so that you don't get zapeed by the radiation in the wrong place, while also desperate to have a leak. You're a hero.

Good luck with the last reamining treatments.

JedSee.

User

Posted 29 Apr 2023 at 18:51

Thanks everyone for your good wishes and support, it means so much to me.🙏 without you and the help of my Maggies Mens Cancer support Group, and not forgetting my family, I would really have struggled to get through this.

I was on a real downer yesterday, so upset about nothing….but this disease and treatment does this to you at times.

A good sleep and I am feeling back to my cheery(?) and positive self. Been out for a long walk today and going to have a nice evening chilling with my wonderful wife, Alison😊

Bring on Monday…..and even more so Thursday! I know I’m going to be emotional but Alison will be there with me, as she has been throughout. Trying to think of how a I can show my appreciation to the wonderful RT team at the Western. Sitting in the waiting room I see lots of empty choc boxes getting dumped in the bin so would like to do something a little different for them with the Coronation coming up🤔🤔🤔.

I’ve continued developing my poem whilst sitting in the waiting room trying to take my mind off my bladder and I’m actually quite proud of it…and it so reflects my experiences and moods. I will post on here after Thursday.

User

Posted 30 Apr 2023 at 19:15

On the drinking water before RT thing, before my sessions I had the mini enemas when got to the hospital and waited until someone from the RT team came & told me to drink my 3 cups of water which was, to the best of their abilty, 20mins before I went onto the table and that worked quite well.

Peter

User

Posted 30 Apr 2023 at 19:49

Hi Peterco,

Yes that would work very well…on occasion when they’ve been early they’ve come out and told me to get it down(the water that is lol).

There’s so many people coming and going I wondered if an electronic signboard might be a good idea to say where you are in the Q and when to start drinking…..maybe that’s too technical!

I’m actually quite nervous about tomorrow but am determined not to get into that situation again…I will just have to tell them before treatment starts if I’m struggling and take it from there. I’m hoping the 20 mins wait will help a lot especially at this late stage and will be wearing a pad just in case.

User

Posted 01 May 2023 at 08:01

The Bladder thing, is probably the worst aspect of the treatment - just keep thinking, it is saving your life mate.

User

Posted 01 May 2023 at 17:27

Quick Update…all went really well today although I was really nervous until I spoke to the Radiographer.

Changed my routine a bit to drink less fluid in the morning(my appointment times are 1pm rather than 3pm) and make up for it when home.

Staff reassured me that if I had been moving too much on Friday the machine would have detected this and stopped…Phew!

Used a pad and they also put one on the table…having both these helped me relax and I didn’t even have to rush to the loo when I was finished.

I definitely think having your appointment times the same each day helps…you get into a routine that suits you.

Been out on my ebike this afternoon…weather is crap but really enjoyed it.

Life goes on…3 to go😊

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