My Radical Radiotherapy Starts Today!

Good Luck Steve,

I hope you enjoy your daily RT as much as many of us have done, and that you'll reap the benefits later.

It will be over before you know it.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Someone said recently that while he celebrated completing all the sessions, he felt a bit 'flat' when the routine ended.

That's very true. I found myself missing the staff and the friends I'd made during the treatment.

All the very best,

George

Just posted on your "cancer cluster" thread - apologies rushing as usual.

Hope it was okay for you today?

Alison

Roy, George, Arthur, Alison, Bri,

Thanks for all your good luck messages. 

Yourselves and everyone on this site have helped me on my journey so far and continues to do so.

Generally, everything seemed to go well this morning.

First mistake was probably opting for an early appointment (8.30am), the traffic was terrible, but it spite of that, arrived on time.  The early time did mean that there were no delays to my appointment.

I was slightly disappointed that the waiting room atmosphere was rather sombre.  Reading posts of others who have been through this treatment, I thought it would be a lot more chatty.  It was silent.  I'll have to try and change that.  Still, very early days so far. 

Emptied my bladder, had an interview with a radiographer during which I drank my 500ml of water.  Thirty five minutes later I was stripping off my jeans, donning my gown and being lead into the treatment area.

I found the RT quite straightforward.  In some ways, because you don't feel anything, it almost seems as if you've not had anything done to you.  You just lay there, watching the equipment rotate around you occasionally, and making strange noises once in a while.  Before you know it, the radiographers are coming in and telling you you're free to go.  I nearly said "Is that it?"

Following my return to the waiting room, my first port of call, was a visit to the loo.  I could have waited longer but decided not to show off and try and drive home before going.  If I'd been caught short and had to find a loo on the way home, I wouldn't have heard the last of it from my wife (who had attended the appointment with me).

So, facing my second treatment tomorrow.  Later appointment (12.35pm) so I can have a bit of a sleep in.  Looking forward to it.

Steve

Edited by member 14 Oct 2014 at 22:23  | Reason: Not specified

Day Two out of the way.

The treatment is really straight forward. 

The staff are great, don't know about fellow patients yet as no one has spoken.  The waiting room was packed today but it was quieter then the local library. 

Good job I noticed there was a thirty minute delay otherwise I would have drunk my water too early and would have been suffering if I'd have to wait longer for the treatment.

Anyone considering this treatment, I'd recommend it so far, it's painless.

Onward to Day Three.

Steve

I think I spoke to soon when I said everything was going so well.

Last night I started to notice my urine flow was very weak. Even worse this morning, it's no more than a trickle.

At the moment, I'm sat in the RT waiting room, waiting to see what's happening. They've told me to drink my water and see what happens. They're going to try to give me today's fraction, then take a urine sample to see if I have an infection. They've said it's very early to get a reaction to the RT but it does happen. Oh well, perhaps it reflects my luck recently.

Steve

Edited by member 16 Oct 2014 at 12:09  | Reason: Not specified

Ended up having the fraction, followed by giving a urine sample. Told to go to A&E if there were any signs that my urine flow stops completely. They think the most likely cause is an infection as it would be very unusual for me to affected this early. Anyway, they're going to see what the test shows. Meanwhile, my flow is still a slow trickle.

Not what I was expecting by day three.

Has anyone else had problems this early into the treatment?

Steve

Flow was not a problem in my case but increased frequency certainly was.  It is possible that the flow was not affected because I was already taking Tamsulosin to help flow as I have a narrowed sphincter.

Hi Steve,

I had problems within the first week too.

The pills mentioned by Kevin and Barry, 'TAMSULOSIN', worked well for me, although I had to take a double dose for a while half way through the 37 days. They were prescribed at the unit by my oncology nurse.

Good Luck,

George

Edited by member 17 Oct 2014 at 16:54  | Reason: Not specified

Thanks Alison, Kevin, Barry, Mo and George for your messages.

Day 4 went well, apart from the continuing very weak flow problem. I think that it must be the RT causing the problem especially with Kevin and George experiencing the same thing fairly soon into their treatment. It might have hit me hard because I'm having 3gy each day so the side effects may have kicked in a bit sooner. I hope by the time I go on Monday they might give me the Tamsulosin tablets.

The good news today was that when I arrived in the waiting room, I sat next to a guy who I'd spoken briefly to yesterday and we were joined by a couple of others, arriving for treatment who joined in the conversation.  We had quite a good chat before having to go for our sessions.  It was more like I'd expected it to be like. Only problem is my next week's appointments are at different times so I may not see the same people again for a few days. It does help to be there without my wife (she stopped attending the sessions after the first two days), because it's easier to strike up a conversation when you're by yourself.

Oh well, looking forward to next week. I quite enjoy the RT because I feel I'm doing something, at last,to beat this disease.

Have a good weekend, everyone.

Steve

Edited by member 18 Oct 2014 at 09:00  | Reason: Not specified

Thanks for you message.

Just having 19 fractions over four weeks so only three weeks to go.

It will be over all too soon as I've been on a bit of a high since it started because for the first time since diagnosis, I've really felt as if I'm receiving treatment to kill off this dreadful disease. I know I've been on Zoladex (HT) but a stomach implant once every three months, which I know is weakening and controlling the cancer, doesn't really feel as if anything is happening.

So onward into week two.

Keep in touch.

Steve

Hi,

Day Six,

Had an 11.15am appointment, arrived an hour early as my restricted flow problem is barely a trickle now and I wasn't sure I could empty my bladder to be able to drink my 500ml of water. I checked if I should drink the water and they told me to have a go if I could. I managed it and while waiting for my call to go for treatment, I was called in to review my first five days.

They were generally pleased with the way things had gone apart from the flow problems which they decided they were going to give me tablets for. Only problem was that they had to get the ok from my oncologist.

My treatment, which because of the review was 30 minutes late, went ok apart from me feeling like I was going to burst (nearly an hour after I had drunk my water on an already pretty full bladder). They asked me to wait, after my dash to the loo (which produced less than "half a cup" of pee!), so they could sort out my tablets. I waited but then they said it could it take a while because my oncologist wasn't available so I ended up leaving without the tablets yet again. I did have an appointment with my GP to have my Zoladex implant so I couldn't afford to miss that, so I couldn't wait any longer.

I'm getting a bit frustrated this evening because my flow has almost stopped and tomorrow's appointment isn't until 4.20pm and it will probably take a couple of days for the tablets to work, once I get them.

Feeling a bit fed up.

Steve

Edited by member 21 Oct 2014 at 23:18  | Reason: Not specified

Hi Steve,

I agree with Kevin and Ray, I really would do a bit of jumping up and down (not literally) but he who shouts loudest and all that that. If the flow slows even more I would go to A&E . In the past I have held of from making a fuss and eventually have got to A&E to be told you should have come hours ago.

You must be feeling fed up, it will all sort it self out but don't be fobbed off.

BFN

Julie X

Thanks, Kevin, Ray, Flexi, Julie and Mo for all your messages.

Day Seven (Wednesday):

I rang the hospital this morning and said I was coming in to get my tablets because I couldn't wait any longer.  When I got there they suggested I could have my RT fraction so I didn't have to come back later in the day (my appointment was for 4.20pm) and then I could see someone in the Urology Department about the tablets after that.  After nearly three hours I finally left the hospital with a box of Tamsulosin, at last!  I was so relieved to finally get them but annoyed that it proved so difficult. Just have to wait for them to work now.

Sorry I've not replied earlier but I've been working since leaving the hospital.

Signing off now as my next fraction is due for 8.40am.  At least I can sleep easier knowing that things should get better.

Steve

Edited by member 23 Oct 2014 at 00:49  | Reason: Not specified

Hi Steve,

As Kevin mentioned, I was put on a double dose of Tamsulosin midway through my RT, as peeing trouble worsened.
Before she prescribed that dose, my specialist oncology nurse checked my BP as one side effect can be dizziness.

As it happen, I was never dizzy while taking the capsules.

Good luck. I hope things start to ease up for you very soon.

All the best,

George

Day Nine (Friday):

Had 8.40am appointment, done slightly early.  Wasn't sure if the water I drank had worked it's way through the system as I'd only finished it 25 minutes before but I did feel I needed to dash to the loo immediately after the session had finished.  I wasn't sure if I'd emptied my bladder before I started my water because my flow is still quite weak. 

Was given my appointment list for next week, was disappointed to find that I've been given a 1.15pm appointment for next Thursday as I have a major job beginning at 1.45pm, 15 miles away.  I had requested at the start of my treatment if I could have morning appointments so I could continue to work.  So happens next week, this is the only job I have on the diary so I asked if it was possible to swap it for an earlier appointment.  I was the first person to be handed their appointment list, as I was first patient of the day, so I would have thought it would be a fairly simple to swap round times as no one else had received their list yet but they said I couldn't change it.  When I suggested that would it be possible to skip that appointment and tag it on to end of my treatment, they said I couldn't do that.  I left frustrated that they were being so awkward because the majority of the patients I see in the waiting room are pensioners and it probably wouldn't matter if their appointment times were slightly different.  My appointment needs only to be 30 minutes earlier to be able to do my job. 

Sorry to unload like this but I feel pretty fed up.  The client is not going to be pleased when I have to cancel the job, they may not come back to me to do future work so it could be very costly. 

When I had my RT review last Tuesday I was told that they would be there for me if I had any problems. I mentioned then that being self-employed, if I didn't work, I can't pay my bills but they seem to forgotten that.  A week without work will cause me real problems.  It's stressful enough having cancer without having these problems on top.

Steve

Edited by member 25 Oct 2014 at 03:37  | Reason: Not specified

Hi Steve,

i am very disappointed to hear that your RT unit is being so inflexible.

My own experience was much different.
At Newcastle, I could change appointments any time I needed.

I wouldn't let up on this if I were you. Get in touch by phone as soon as you can and stress your need to get your work done.

Or.....as Kevin says, if they remain inflexible, your car will mysteriously break down en route and you'll have to phone to tell them you can't make it for 1.15.

GOOD LUCK!

George

If they had a machine go down they would have to rearrange everyone's appointments so it can be done.

Sorry your big ends are playing up especially on Thursday.

xx

Mo