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My Journey through HT and RT

User
Posted 24 Apr 2023 at 23:05
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 08:44

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 09:21

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 14:43
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 15:01

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 16:52

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 17:08

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 19:29
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 20:45

 

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 21:21

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 21:50
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 23:40
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 10:35

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 19:23

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 19:51

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 20:15
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 20:49
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 09:01
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 18:27
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😊

User
Posted 01 May 2023 at 19:14

Glad to hear it's going well decho had 37 fractions myself 2 years ago a little sore at the end but found it tolerable 👍

 
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