My Journey through HT and RT

User

Posted 06 Apr 2023 at 14:48

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

Ido4

User

Posted 06 Apr 2023 at 18:23

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 18:27

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 18:52

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 13:01

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 13:57

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 21:06

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 14:48

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 15:03

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 17:06

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 13:53

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 22:22

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 13:11

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 13:31

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 13:36 | Reason: Not specified

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

User

Posted 23 Apr 2023 at 16:47

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 18:51

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 19:12

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 19:59

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 10:52

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 22:10

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.

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