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CT scan, waiting for radiotherapy

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User

Posted 24 Jan 2016 at 23:04

Good luck and Best Wishes Frank

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 25 Jan 2016 at 07:12

Frank

Good luck with your treatment, I have session 3 of 20 this morning. But you should not be visiting the little boys room after you arrive. After first emptying your bladder you are required to drink 2 or 3 cups of water from around half an hour before so that you have a full bladder for the session.

Despite my worry that the therapy would make my water works issues worse, it seems to be having exactly the opposite effect with good flow, 3 hours between trips in the day and only 3 trips during the night last night. Hope the same happens for you.

Dave

User

Posted 25 Jan 2016 at 07:31

Good luck to those of you going through RT . You'll soon become old hands at what is required of you and the daily procedures you will adapt to.

The 37 sessions soon pass even if seems all embracing and just your normal way of life. And then it will be over.

I found this forum beneficial. Just keep us posted. There's so much help here.

Seek advice whenever you wish.

Many of us have been there.

User

Posted 25 Jan 2016 at 09:35

Hi Frank

Hope all goes well for you today. When I had my RT I met a great bunch of people there for treatment and almost everyone was positive, we shared a lot and the time seemed to go very quickly.

Arthur

User

Posted 26 Jan 2016 at 21:37

Hello Arthur,

today was my second session, a little easier than my first one.

Let me explain. I was asked to arrive by 1pm, my wife and I arrived at 12.30pm. I wasn't called until 1.50pm! THen I was taken to a room which, it turned out, had a radiotherapy simulator. I thought it was the actual treatment, but was told otherwise. So I had to lie down flat on this narrow rock-solid bench. It turned out I was there for almost 45 minutes according to my wife. Well it was extremely unpleasant, as amongst other things, I suffer with my back and my spine has scoliosis. It was most uncomfortable, but at least I don't have to do this again!

Just over an hour later, I went into the waiting room, to wait for the radiotherapy. I had to drink 3 cups of water then wait 40-45 minutes to be called for treatment. Also in my case, I DO need the boys room before I drink the water. The treatment today wasn't too bad, I just concentrated on the noises the machine was making! As yesterday, after the treatment, it was difficult to get off the table, the nurse kindly helped me.

So tomorrow, I shall repeat all the joys that I experienced today! So far, in the RT waiting room, all the other people keep themselves to themselves, and looking unhappy. It appears I'm the only laughing boy there! :D Well, at least I can read the paper, helping the 45 minutes to pass.

Frank.

PS Tomorrow afternoon, I hope to join a group of fellows at the Maggie's Centre, for some good old prostate chat!

Edited by member 26 Jan 2016 at 21:38 | Reason: Not specified

User

Posted 27 Jan 2016 at 06:45

Frank, wishing you well for the remainder of your sessions.

I used to ask for the lights to be dimmed during treatment. This was because there was a Perspex panel above the table and when the beam started I could see the reflection of the red light moving across my body. It helped me know how far it had travelled on each of its rotations and how soon it would be over.

A simple thing but it helped.

John

User

Posted 27 Jan 2016 at 08:36

On our machine there is a green line on the ceiling which moves as the equipment rotates, presumably tied up with the laser alignment. But I don't need that to tell me where I am in the process as I can clearly see the head as it moves round me and the buzzing noises each time they fire a shot (they seem to do this in four places rather than the three I was led to believe). Yesterday I asked them to turn down their background music...

Fifth session today. Not sure if I am starting to get the side effects as having some bowel problems - on Monday they had to have me on the table twice as I had some gas inside me and now I am having a mixture of constipation, diarroeha and gas. Used cosmocol (variant of movicol) the last couple of days, not sure if that is a good idea or not.

I usually need a bit of help to get off the table and usually slightly light headed after lying flat on my back for 15-20 minutes.

User

Posted 27 Jan 2016 at 09:35

I was advised by the radiographers to use both normacol and loperamide from an early stage once I'd had a severe upset. It left me dehydrated and delayed my treatment that day as I had to drink extra water.

Tell the radiographers what your experiencing - they'll help you.

Frank,

I know what you mean re the waiting area. Sometimes I was the only patient there and other days the place was heaving.

I can be a chatty person and soon started to talk to others. I soon learnt much about breast cancer !

Luckily I built a rapport with another patient and we got on really well. We still see each other .

The receptionists liked it when we bowled up and soon had them laughing. They said we were the highlight of their days and although pleased for us that we finished a day apart ,told us that they would miss us.

On one occasion we were in a deep conversation about this or that and were told off for not being ready for our respective treatments !

But mostly other patients just sat deep in their own thoughts clutching their cups of water.

User

Posted 30 Jan 2016 at 18:48

Hello Dave, Hello Surr,

thank you for sharing your experiences.

I've completed my first week. During day 3 ond 4, it turned out that I had 4 bowel movements before reaching hospital. It was almost diarhoea, and caused me a lot of discomfort. Speaking to the nurses, we agreed to reduce the "mild" laxative to 10ml dose. I think this will help.

Yesterday was a late appointment for 4.30pm, so after being invited to my mother's for supper, my wife and I got home just before 9pm.

During the night last night, I got up 3 times for a wee, and it wasn't very nice. After I started, the flow stopped and I couldn't carry on. It was difficult to sleep after that but I eventually did. This morning I returned almost to normal.

On Monday, after treatment, I see the radiologist. Not sure what we'll discuss, but I'll soon find out.

I'm very grateful to the number of people who have kindly offered to drive me to my hospital appointments. I shall make use of them. This past week, my mother and my wife shared the driving.

I am also grateful to the staff in the radiotherapy department, who kindly arranged almost all of my appointments around a 2 hour window at lunch-time. Also every Wednesday afternoon, there is a group meeting with fellow prostate cancer sufferers, held at the Maggie's Centre within the hospital grounds - a beautiful place, and the members are an inspiration.

Frank.

User

Posted 09 Feb 2016 at 18:51

Hello Friends, it's been a while, but past few days has been interesting!

Friday of last week, in the morning, I had a tough time with diarheoa - frightening. After 2 normal bowel movements after getting up, I had 3 or 4 bouts of diarheoa, which was awful and frightened the life out of me. On that day 2 of my nephews were driving me to hospital for treatment, and I wasn't looking forward to it. It seemed my worst nightmare was coming true. I had read about it as a side effect and there I was!

I actually phoned to tell the hospital that I wasn't going! My wife said I had to go, as I'd promised a colleague who lives nearby, to have a lift home! The lady on the phone said she'd get a nurse to phone back in 15 minutes. In fact the nurse phoned my wife just over an hour later, while we were on the road. I managed to travel to each of my toilet stops, half an hour apart.

Got to the hospital and had treatment, the radiologist told me to stop taking the laxative. I managed to get home ok, including 2 toilet stops. My weekend turned out good. Saturday I did 1 bowel movement, and Sunday I had 3 during the course of the day. I stopped taking the laxative.

So yesterday ( Monday ), started well enough, I had 3 bowel movements before breakfast. After breakfast, I had another 5 bowel movements which were horrendous diarheoa - wow, it was awful and I was in panic mode. I phoned the the hospital to say I don't think I can make treatment, but they said, they would like it if I could! Oh, I forgot to say, that I took Immodium on 4 occasions, but it took a while to work.

Again the lady said they would phone back. I told my wife I'll wait until they do - no way could I travel in the state I was. The phone call came after 80 minutes or so. By then I had settled down, and eventually, my wife and I went travelling towards the M4.

Got to hospital and signed in, and waited to speak to the radiologist. She was very good and explained that the radiotherapy could be causing my nasty side effect as it does happen. By the time we were going home, my body had settled down.

Today I went for treatment as normal, but I was a little nervous, as so far today I haven't had any bowel movement - I should think I had a good clearout yesterday!

So this is my latest experience. I've had 2 and a half weeks, with 5 more weeks to go - absolutely marvellous! Has any other member had this problem? And how long may it last? I most definitely did NOT sign up for all this nonsense, folks!

Frank.

Edited by member 09 Feb 2016 at 18:53 | Reason: Not specified

User

Posted 09 Feb 2016 at 21:04

Frank,

I had many problems throughout my RT as I've posted before and I think I was the worst patient they had had for some time.

So much so I'm sure the staff groaned when they saw my name come on the list. It was mainly for fluid retention and also for diarrhoea . Wow ,I really do not want to have to go through that again. So I understand what you're going through.

I had to have many bladder scans as the diarrhoea made me dehydrated and I did not have enough fluid for safe RT. Or too much fluid and I had to offload water.

I'm sure it will settle soon and you'll get to grips with it soon and have a good routine.

Keep perservering , it will be worth it in the long term.

The diarrhoea will soon pass once you've finished your treatment .

In the meantime I shall be thinking of you .

It will soon be over.

Best wishes

John

User

Posted 10 Feb 2016 at 09:30

Sorry you have had the runs Fransesco, hope the treatment is going well otherwise.

I was advised early on by the specialist nurse to drop the laxatives (senna and cosmocol) as they definitely made me have diarrhoea. I tried (half heartedly) a low fibre diet but last week she suggested stopping that as well as they would rather have me tending to diarrhoea than constipation. It seem a fine line, too little fibre and you constipate, too much and you go the other way. By tweaking the fibre intake - more bran flakes one day, less the next etc, it seems to be working. Fairly free movements but not diarrhoea. A bit of gas - which I get rid of by sitting on the loo when I change into my gown, making sure I don't pee at the same time....

Just off to session 15 (of 20), looking forward to the last one next week....

Dave

User

Posted 08 Mar 2016 at 08:36

Hello Friends,

I'm afraid I don't visit very often. I'm on week 7 of my radiotherapy treatment. Next week I have 3 days and I finish on 16th of March.

For past few weeks, I've had diarrhoea about once a week. Sunday just gone and yesterday, I had it 2 days in a row! I had to phone the hospital, to explain I would be an hour late. That was ok by them, just as long as I turn up.

I read your post Dave. How come a low fibre diet gave you constipation? I would have thought a high fibre would give you that?

I was on youtube the other night and came across a video from Kent Oncology. They advise their patients to eat a high fibre diet. My radiotherapy team advised me to eat a low fibre diet. So who is right and who is wrong? Apart from a touch of diarrhoea, I've been fine with my treatment.

On Wednesday this week ( tomorrow ), I see my oncologist. What she will have to say, I simply don't know. One question I'll be asking her, is how do I go about resuming my normal diet. I'll let you know what she says.

Frank.

User

Posted 08 Mar 2016 at 08:47

Hi Frank,

They are both right, ordinarilly we should all eat a high fibre diet, lots of fruit and vegetables, the '5 a day' etc.

However, when you are actually having radiotherapy, particularly external beam RT, you should switch to a low fibre diet for a few weeks to counteract the effect of the radiation on your bowels.

My hospital gave me a diet sheet, no fruit, no greens, no salad, no brown bread, brown rice, or beans.

The recommended boiled potatoes and rice, chicken or fish and specifically Jaffa Cakes!

It worked for me.

Dave

User

Posted 08 Mar 2016 at 09:01

Frank,

You're almost there, the end is in sight.

What you're experiencing is quite normal. If you've survived this far then you've been lucky.

I had severe diarrhoea about 3 weeks in and was completely dehydrated as a result.

Loperamide became my best friend alongside normacol. And worked very well for me.

The symptoms abated within 2 weeks of finishing RT.

I was told to eat as normal diet as possible , but to avoid spicy foods , spirits, beer and caffeine. And to drink lots of water.

I was even told to go home and have a glass of wine, but didn't as I'd stopped alcohol by then.

On Christmas Eve though ,the mantra amongst all though was " right lads, remember no Brussel sprouts nor Christmas pud tomorrow ".

I was expecting a far more rigid diet so was pleasantly surprised.

It seems each hospital has differing recommendations .

Hope all goes well for you after RT finishes.

John

User

Posted 09 Mar 2016 at 08:29

The clinic did not really give me any guidelines on diet and the only reason I went on a (semi) low fibre one was because of comments on here when I was having diarrhoea issues. Now 3 weeks after the end the bowels seem very much back to normal. Flow is something else, sometimes good, other times weak and certainly problems with urgency and frequency. Apparently that may take 6 to 8 weeks to stabilise, however I am already going a little less during the night so it does seem to be improving. Back to the oncologist for my post treatment appointment on April 4th with PSA test a few days before that.

Dave

User

Posted 28 Apr 2016 at 19:12

Hello John, hello Dave,

I apologise for my late reply. My wife and I have been busy with " stuff ", since my last radiotherapy appointment on April 16th. On Monday, April 14th, my wife and I were rear-ended by a Frenchman, in an old Mitsubishi Pajero pickup truck. We were waiting at a roundabout in Carmarthen to continue on the A40 towards Haverfordwest - we were less than 40 miles from home! The Frenchman rammed the back of our Skoda Estate causing lots of damage; the rear tailgate and rear bumper needed replacing. It was quite a bump. I'm surprised I didn't end up with an injured back.

Besides all this, I've been busy catching up with re-arranged appointments for dentist, optician and even a heart-scan, which turned out ok. Even this afternoon, I've been for a chest X-ray.

Then I'm busy with visiting family members, visiting my GP several times. And looking after grandchildren, which was lovely but tiring.

As for my side-effects after treatment, my diarheoa symptoms seem to have disappeared, thank the Lord! I still visit the toilet quite often. In past 2 weeks, my night-time visits seem to have settled down to 2 or 3 times. Best of all, It's good to be able to enjoy a normal diet again. I haven't gone crazy, including a varied diet slowly.

Being diabetic, I've applied for a 6 week course run by the Expert patient programme, to learn more about healthy eating for diabetics. Since returning home, I've been feeling quite tired, daily and also feeling perishing cold. I hate the current cold weather with arctic winds. THerefore I haven't felt motivated to go and do as much walking as I would like. Not that I can walk far. I don't know if I could walk 1 mile at present!

About 3 more more weeks, before I go and see the oncologist for my follow up appointment. I hope it goes well.

Frank.

User

Posted 30 Apr 2016 at 05:13

Frank,

Thanks for the news, It seems like you've been busy . I hope that you have good news when you visit the oncologist in a few weeks time.

I know the A40 in Carmarthen quite well, in fact I'm staying 6 miles from Haverfordwest as I write!

Regards,

John

User

Posted 30 Apr 2016 at 08:11

Hello John,

thanks for the reply.

These last couple days I've been feeling extremely tired and just wanting to sleep. I phoned my cancer lady from Pembrokeshire Cancer Support, who explained that I could have after effects following radiotherapy, for many months. That sounds like fun, but at least we're approaching the right time of year, so I'll be able to get out more.

Tomorrow, my wife and I go to Cardiff to stay with my son and his family for 1 night. This will be my first long trip since my treatments at Swansea. I haven't been to Cardiff since the autumn, as with my symptoms, I simply didn't want to travel. It will be nice to see our grandson. I find that Cardiff is generally 2 degrees warmer than Pembrokeshire. We come home for Monday night.

Frank.

User

Posted 30 Apr 2016 at 09:46

Frank,

I hope you enjoy your time away in Cardiff. Yes, I know about the tiredness , I really thought it would wear off quite soon but it didn't. RT fatigue is quite different to general tiredness. I still am tired from time to time even after a year or so but put it down to the HT. I too rang the specialist nurses ( PCUK ) about 4 months after RT as I was finding life difficult . I'd returned to work on a phased return about 2 months before and everyone there was terrific in the support they gave me. However the nurse told me that what I was experiencing was quite normal and you must initially adapt to a slower lifestyle. Eventually energy levels returned and I've been able to enjoy a more normal way of living since.

John

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