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My Radical Radiotherapy Starts Today!

User
Posted 14 Oct 2014 at 06:51

Hi,

The day has finally arrived.

Royal Berkshire Hospital, 8.30am.  Start of 19 fractions of RT.

Four weeks that could change my life.

Feeling nervous.

Steve

User
Posted 16 Oct 2014 at 17:27

Hang in there Steve, they will sort it out.

Ali x

User
Posted 22 Oct 2014 at 08:10

Ouch! Sorry to hear that Steve.

You probably don't want to hear this but the tablets are not a quick fix, mine sort of edged in over a few days.
I'd ride their back if I were you until you get the tablets in your hand.
Perhaps ring them in the morning to enquire if the Oncologist has given the ok, saves wasting all the day until you turn up late afternoon.

I'm surprised at the perceived relaxed attitude to your condition, when I hit these issues it was all done and dusted in an afternoon. I mentioned it, an infection test was done, I walked out with the tablets. Plus LOTS of warning that if it got worse or stopped completely I had to present at A&E PDQ to be drained before my kidneys exploded (I may be embellishing a bit there)

I'm guessing that as you are having a reduced visit / higher fraction treatment path the teams are unsure of the correct protocol.

Best of luck,

Kevin

User
Posted 22 Oct 2014 at 09:38

Hi Steve

Had the same time frame and daily dose (3DRT) – loads of issues with frequency but no issues with flow whilst having RT. As an side it was nigh on a year before my consultant put me on tablets as he felt it was better to wait for damage to self heal – it didn't nor hasn't.

As Kevin said , tablets are not a quick fix. Don't take risks if you can't pee – get it sorted.

Good luck with RT

Ray

Show Most Thanked Posts
User
Posted 14 Oct 2014 at 12:34
Good luck Steve, 4 weeks will fly by. Try to keep your bladder filling the same every time. You will find your own ideal time to fill up, mine was drink 4 cups at 40 minutes to go and finish them with 35 minutes to go, enjoy the ride into the scanner and relax its a doddle.

Roy

Edited by member 14 Oct 2014 at 12:52  | Reason: Not specified

User
Posted 14 Oct 2014 at 12:39

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

User
Posted 14 Oct 2014 at 15:50

Hi Steve, Hope it goes well, it will be completed sooner than you think.  I'm sure you'll make a lot of 'new friends'  Look forward to hearing when you finish.   Arthur

User
Posted 14 Oct 2014 at 18:16

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

 

Hope it was okay for you today?

 

Alison

User
Posted 14 Oct 2014 at 19:55

Hope your first zapping was un eventful Steve

Bri

User
Posted 14 Oct 2014 at 21:56

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

User
Posted 15 Oct 2014 at 10:26

> I was slightly disappointed that the waiting room atmosphere was rather sombre

Don't worry - the mood can change depending on how many people are new, and different personality types.

Certainly I found that on same days it was fairly quiet, when on others the radiotherapists had to pry people away.

> Thirty five minutes later I was stripping off my jeans, donning my gown and being lead into the treatment area.

Maybe just Bath (or the people I was with), but men didn't seem to bother with robes - people simply strode proudly in for their session in boxer shorts from the two "feeder" changing room !

User
Posted 15 Oct 2014 at 23:33

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

User
Posted 16 Oct 2014 at 07:18

Good to hear Steve!

 

My OH had one or two occasions that he had to 'empty the bladder' and start again if there was any sort of delay.

 

Hope the next few sessions run smoothly and you can look forward to the weekend off the RT although I expect that there are no such things as weekends off in your job!

 

Alison

User
Posted 16 Oct 2014 at 09:51
Hi,

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

User
Posted 16 Oct 2014 at 17:27

Hang in there Steve, they will sort it out.

Ali x

User
Posted 17 Oct 2014 at 03:02
Hi all,

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

User
Posted 17 Oct 2014 at 08:58

Hi Steve,

my flow diminished within the first week of undergoing RT.

I was put on Tamsulosin tablets for the duration of my RT and continued after.

I also was checked for infection but as non was found was put straight on the tablets.

My flow picked up after a few days and slowly took another dive as RT went on.

At one point I was on daily bladder scans post RT dosage after emptying my bladder to check for residual urine.

The final fix would be to fit a catheter but it never came to that for me.

 

I continued taking the tablets after finishing RT for around a month when my flow had returned to my normal.

I then came off them which brought back the symptoms at a lesser level. A month or so later and alls well again.

 

I'd ask to be given a treatment regime to relax the bladder neck and surrounding area.

As mentioned. I was given Tamsulosin.

 

The tablets should see you ok.

 

Best wishes

 

Kevin

User
Posted 17 Oct 2014 at 09:47

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.

Barry
User
Posted 17 Oct 2014 at 15:16
Steve

sounds like your treatment has started with a bit of a bumpy ride, I think you should ask for the drugs to help your urine flow. As for people talking to you in the waiting room, Mick hd a similar experience when I was with him, however the one day I could not go with him for his chemo he got chatting straight away to the Man next to him, they stayed in touch all through his illness. It might be a case of you needing to break the silence first.

Hope things get better for you

xx

Mo

User
Posted 17 Oct 2014 at 15:37

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

User
Posted 17 Oct 2014 at 16:27

I would also mention that RT can affect your bowels. Some men range from being very loose while at the other extreme some men - I was one of them - become constipated, possibly due to too restricted a diet. Isn't it strange how men react differently and often unpredictably to similar treatment?

Barry
User
Posted 18 Oct 2014 at 01:43

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

User
Posted 18 Oct 2014 at 15:13

Hi Steve,

Sorry that you have hit side affects so early on, hopefully if they give you the tablets on Mon this will soon sort things out. Lets hope it is plain sailing from now on.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

I know what you mean it is sometimes is easier to strike up conversation when you are on your  own. How many weeks have you got left to go?

Well the first week is under your belthttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif(no pun intended)

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 18 Oct 2014 at 16:30
Hi Julie,

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

User
Posted 20 Oct 2014 at 20:25

Hi,

Day Five: Had treatment (9am) even though I thought it may be cancelled due to the strike. Went well.

I asked about my urine test results as my flow has not improved and they said that they found I did not have an infection. Just as I thought, I'm just one of the "lucky" ones who has developed very early side effects. Still no tablets, they said they would tell me what they were going to do tomorrow when I have my review.

Zoladex implant due tomorrow too (in my stomach), glad I'm not too sore yet.

Feeling a little sad over the news of Lynda Bellingham.

Hope everyone had a nice weekend, I worked unfortunately.

Steve

Edited by member 21 Oct 2014 at 23:20  | Reason: Not specified

User
Posted 21 Oct 2014 at 22:55

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

User
Posted 22 Oct 2014 at 08:10

Ouch! Sorry to hear that Steve.

You probably don't want to hear this but the tablets are not a quick fix, mine sort of edged in over a few days.
I'd ride their back if I were you until you get the tablets in your hand.
Perhaps ring them in the morning to enquire if the Oncologist has given the ok, saves wasting all the day until you turn up late afternoon.

I'm surprised at the perceived relaxed attitude to your condition, when I hit these issues it was all done and dusted in an afternoon. I mentioned it, an infection test was done, I walked out with the tablets. Plus LOTS of warning that if it got worse or stopped completely I had to present at A&E PDQ to be drained before my kidneys exploded (I may be embellishing a bit there)

I'm guessing that as you are having a reduced visit / higher fraction treatment path the teams are unsure of the correct protocol.

Best of luck,

Kevin

User
Posted 22 Oct 2014 at 09:38

Hi Steve

Had the same time frame and daily dose (3DRT) – loads of issues with frequency but no issues with flow whilst having RT. As an side it was nigh on a year before my consultant put me on tablets as he felt it was better to wait for damage to self heal – it didn't nor hasn't.

As Kevin said , tablets are not a quick fix. Don't take risks if you can't pee – get it sorted.

Good luck with RT

Ray

User
Posted 22 Oct 2014 at 19:49

Hi NikonSteve,

 

I hope you've had a better time of things today and you've been able to get things sorted.

 

Flexi

User
Posted 22 Oct 2014 at 20:56

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

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Oct 2014 at 21:51
Steve

I am worried that you are not being given the attention you need,urine has to go somewhere and if it is staying in your bladder you run the risk of infection and other retention issues. The tablets are not exactly class a drugs so I don't see why they are taking so long. Next appointment make sure you bang your drum and get some action.

xx

Mo

User
Posted 23 Oct 2014 at 00:47

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

User
Posted 23 Oct 2014 at 08:42

Great news Steve!

They should kick in soon. As mentioned previously, I found that they were slow(ish) acting but once they kicked in I could pee for the Olympics.
I found that the effect did diminish over time as the bladder continued to take a pounding but never to the point where I needed to consider visiting A&E or similar.
The team did insist on monitoring my bladder towards the end due to concerns with retention (not fully emptying) but I always remained within acceptable limits.
I think I remember that George was put on an increased dose. So there are still options if needed in the future.

all the best

Kevin

Edited by member 23 Oct 2014 at 08:43  | Reason: Not specified

User
Posted 23 Oct 2014 at 15:40

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

User
Posted 24 Oct 2014 at 07:05

Thanks, Kevin & George, fingers crossed it will improve.

Day Eight (Thursday):

8.40am appointment, much better time for a session, I could find a space in the hospital car park.  The session went very well and very quick (only the second where they've not done a scan first).  Left the hospital by 9.05am. 

My pee flow has improved slightly, due to the Tamsulosin tablets.  The bowels are starting to go through the change now, six visits to the loo during the course of the day.  Recommended to go low fibre to help the situation.

So on the Day Nine.

Steve

 

 

Edited by member 25 Oct 2014 at 02:35  | Reason: Not specified

User
Posted 25 Oct 2014 at 03:33

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

User
Posted 25 Oct 2014 at 10:53

Sorry to hear your issues Steve.

It's not the correct solution but perhaps your car could <ahem> break down just before that appointment.

My treatment spanned a couple of bank holidays and I was not on attendance for those days.

So I guess the system has some slack in it for missing appointments from a medical point of view.

 

Alternatively perhaps turn up first thing, you did that I think already and they fitted you in....

 

Shame they are not as flexible as you were hoping.

 

cheers

 

Kevin

User
Posted 25 Oct 2014 at 12:33

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

User
Posted 25 Oct 2014 at 13:29

I hope that if you talk to the actual staff on Monday rather than the bookings clerk, they will be able to help. Otherwise, I think your car has been acting up a lot lately and Thursday might be the day it gives up the ghost. John's RT also spanned bank holidays and the team said missing one or two days didn't matter in the long run

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

User
Posted 25 Oct 2014 at 15:38
That is ridicllous Steve, with so any appointments over a month there has to be a little more flexiility than that. I suspect you encounteed the hospital jobsworth. Talk to the clinic staff on Monday, if they are not able to help do you have a clinical nurse specialist assigned to you as they should be able to change the appointment for you. I suspect you are just such a nice man that it goes against the grain for you to have to ask for some compromise.

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

User
Posted 28 Oct 2014 at 01:19

Thanks Kevin, George, Lyn and Mo for your messages.

I'm glad I wasn't the only one who thought my treatment in this matter was rather unfair.

I decided to follow your advice and ring up first thing this morning (Monday) and speak to the senior radiographer who had done my review last Tuesday.  I had tried to explain to her then how important it was that I could try and work as much as possible during the treatment.  Being a freelance, no work means no money.  It turns out that she'd been off on Friday and not been around when the decisions had been made and told me she'd speak to me when I came in for today's appointment at 1.15pm.

The result was that she changed my Thursday time to 11.20am so I can do my job as planned, but why did it have to be so difficult to reach this stage? 

It's strange but I've felt in a fairly low mood since Friday because I left hospital then feeling as if the radiography team, who have been really good up until now, were no longer supporting me through this important time.  Stupid I know but that's how I felt. 

Steve

PS: I've decided to continue under a new thread "Radical Radiography, my journey continues"

  

 
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