Hi all
I've been a bit quiet on the site lately as Steve has been coping very well with the hormone injections since June - luckily no side effects, but tomorrow is radiotherapy day 1 of 25.
In the last couple of weeks his diet has been slightly altered to conform with the hospital guidance and the 2 litre water intake enforced, he now knows that tea does not count as water!!
I would be grateful for any hints and tips which will help him during his radiotherapy, we have been attending the Guys hospital Prostate support group meetings which have been of a great help to him talking to men who have already had the treatment.
I am very fortunate to work close to St Thomas', where he will be having his treatment, and my wonderful boss has told me to block the RT sessions in my work calendar as "out of office (business)" - all 25 of them!
Anyway, any advice will be gratefully received.
Thanks
Maureen (& Steve)
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Hi Maureen and Steve
I had 37 sessions of radiotherapy and apart from the early start and the travelling it wasn't a problem. First I had to have a scan where they check the prostate and make 3 small tattoos so they can target the PCa correctly. They ask that you empty your bowels before hand and drink a bottle of water about 45-60 minutes before.
The radiotherapists were very good and told me well before hand when to drink the water so I wasn't waiting too long after having it. One thing I learnt from other men having the treatment was to take a bottle of water as the water in the drinking fountain was far too cold.
The treatment apart from dressing and undressing didn't take too long, about 2-3 minutes on the table. I was told that I might get some soreness at the rear end and to get some aqueous cream to relieve it. Fortunately I didn't get much soreness but the cream did help.
Hope all goes well, keep us all informed as you'll get a lot of help and support here.
Best wishes, Arthur
User
Hello
I'm afraid I have no advice on RT as I'm not there yet but I did want to wish you good luck and hope all goes well.
Paul
User
Good luck for the first RT Maureen and Steve.
What a lovely boss you have there.
We can't control the winds - but we can adjust our sails |
User
Hi Maureen & Steve,
Just to wish you well with the radiotherapy. I bet Steve is relieved it's finally starting.
Keep us informed on how it is going.
Good Luck.
Steve.
User
User
Maureen
good morning to you and Steve and best wishes for the first session of RT today.
I can't offer any advice on the treatment side but I am sure others will, as Arthur has done.
You will probably find that you start to see and chat with other people there regularly as Steve has his treatments, so the waiting time passes quickly. When Mick was having chemo the unit was too small for wives, partners etc to go with the patients, however he met another chap who seemed to get the same appointment times as him. They used to chat, flirt a little with the female Nurses and share daft jokes with the male ones! They both had the undivided attention of the Volunteer tea lady who spoilt them rotten.
I wish you all the very best
xx
Mo
User
How annoying is that.
Especially when you're all "geared up" and ready to go
Still, the consolation is Wetherspoons, John's favourite pub.
In fact he is there now enjoying steak Tuesday and pint of Abbot
We can't control the winds - but we can adjust our sails |
User
Hi Maureen,
That's so frustrating for you. I'm so sorry Steve is being put through this. If he's anything like me, he would just want the treatment to start after all the waiting.
Hope you have a nice day anyway. We can send you good luck messages again next week!
Steve
User
What a bum*er Maureen very annoying, I hope you enjoyed lunch and your walk around the City - I work in St Paul's!!
User
Hi Maureen and Steve, sorry to hear the RT put back, very annoying.
I am at the stage that after 5 attempts to complete my CT scan and mark the tatoos, I finally got the go ahead yesterday for my RT to start on the 14th Sept so fingers crossed for then. I have been waiting since mid-May and it is really frustrating as all I want is to start RT and hopefully blitz the PC out of sight.
I hope things go better with your future appointments
Regards Chris/Woody
Life seems different upside down take another viewpoint
User
Originally Posted by: Online Community MemberI meant to post this yesterday(Wednesday):
He was not in his happy place on Tuesday having built himself up for day 1 of RT, and had hardly slept Monday night so his nerves were shot before we got to the hospital!
Luckily for the hospital staff I, not them, was subjected to his ranting for several hours but after 29 years of marriage I have the ability to "zone out" 😉C'est la vie, there will be a feeling of de ja vu next Tuesday!
Ah, Maureen, isn't that what all us loving wives and partners are about.
If he can't rant and rave at you after 29 years, and know that you understand, who can he rant at !
We can't control the winds - but we can adjust our sails |
User
Hi Maureen,
Good luck to Steve today, hope it all goes to plan this time! Enjoy the muffin - Blueberry is my favourite!!
Trish xx
User
Its happening this week for sure Maureen -- for both of us. Best wishes today
User
Hi Maureen,
Please wish Steve "Good Luck" for his treatment. I found it a relief to finally get it underway, it must be for you too.
I hope everything goes well.
Steve x
User
Hi Maureen and Steve
Best of luck for today
Arthur
User
Hi Maureen,
Hopefully Steve's getting into the routine a bit now. Is it St. Thomas's where he's having the radiotherapy? I've been working across the water at parliament on the terrace today. I was thinking of you both. Did you see all the boats on the water at 12.30pm? Could have met up for chat.
Anyway,I hope everything's going well.
All the best.
Steve
User
Glad you re out and about Steve. PS You mail box is full !!
Maureen when I was a child, many many moons ago, one of us children would be given a bowl and we would have to go to the pie mash shop, collect the pies and mash all covered in green goo.
I hated the look and smell of the stuff and have never eaten it, although pie and mash, now you're talking!!
We can't control the winds - but we can adjust our sails |
User
Hi Maureen,
Glad it's going well, you will get into the routine quick enough xxx
User
Well I'm back from a short break from the site, there's a lot to read through after a week! This conversation should now be called "End of Radiotherapy" as Steve completed his 25 sessions on the 9th 😀. I appreciate that individuals react differently to RT but thought I'd put up a short summary of Steve's treatment:
Weeks 1&2 - not much change apart from weeing more often, well there is an additional 2 litres of water a day to get rid of! Week 2 starting to get up in the night, no previous occurances of this - apart from after a long drinking session! Urine flow reduced.
Week 3 - getting up several times each night, fatigue has kicked in probably a combination of lack of sleep and treatment. A sudden onset of diaorhea, but this this started on the day of his 3 monthly hormone injection and flu jab so may be a reaction to either of these. Started to get burning / stinging when weeing, started on cranberry juice. Wiped out for a couple of days but picked up again after a break from work, went back but reduced hours - the good thing is he's self employed so can stop when he wants but the bad thing is he's worrying about not earning 😔
Week 4 - getting up 4 times some nights, fatigue is still an issue. Burning / stinging is not always present but he has mentioned it to the care team. Now weeing every 20 minutes during the day!! Flow problems continue.
Week 5 - hospital have tested for urine infection but that's clear - hurrah! Back to getting up twice during the night, burning / stinging has eased slightly, back to weeing every 40 minutes.
End of RT +1 week - last couple of days getting up once each night, burning / stinging much reduced, flow a bit better and now weeing about every 45minutes during the day.
The treatment team did explain that things might get worse before they get better but as Steve had no previous problems he may get off light. 🙏
Steve will have a combined RT / brachytherapy follow up appointment as brachytherapy is planned for 18 Nov - that will be another story!!
Thanks for of the good wishes during the RT cycle, they have been greatly appreciated.
Maureen (&Steve)
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Superb post Maureen
Very informative thanks and keep us up to date a bit further down the line .
Best wishes to Steve and great that it went so well for him
PS Taxis cost enough as it is without the driver keep getting out for a wee ( meter running of course )
Chris
User
Hello MLJ,
thank you for posting your and Steve's experiences. It's encouraging to know that Steve was able to work during his treatment? I suppose you are now patiently waiting for follow-up appointments.
On Wednesday, my wife and I go to see the oncologist for the first time.
My peeing symptoms were and are awful. On some days, I can visit the loo up to 22 times during the day. At night time I can go up to 6 times a night, although the average is 2 or 3 times a night. Not very funny, but that's how it is.
Frank.
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User
Hello
I'm afraid I have no advice on RT as I'm not there yet but I did want to wish you good luck and hope all goes well.
Paul
User
Good luck for the first RT Maureen and Steve.
What a lovely boss you have there.
We can't control the winds - but we can adjust our sails |
User
Hi Maureen & Steve,
Just to wish you well with the radiotherapy. I bet Steve is relieved it's finally starting.
Keep us informed on how it is going.
Good Luck.
Steve.
User
Hi Maureen and Steve
I had 37 sessions of radiotherapy and apart from the early start and the travelling it wasn't a problem. First I had to have a scan where they check the prostate and make 3 small tattoos so they can target the PCa correctly. They ask that you empty your bowels before hand and drink a bottle of water about 45-60 minutes before.
The radiotherapists were very good and told me well before hand when to drink the water so I wasn't waiting too long after having it. One thing I learnt from other men having the treatment was to take a bottle of water as the water in the drinking fountain was far too cold.
The treatment apart from dressing and undressing didn't take too long, about 2-3 minutes on the table. I was told that I might get some soreness at the rear end and to get some aqueous cream to relieve it. Fortunately I didn't get much soreness but the cream did help.
Hope all goes well, keep us all informed as you'll get a lot of help and support here.
Best wishes, Arthur
User
User
Maureen
good morning to you and Steve and best wishes for the first session of RT today.
I can't offer any advice on the treatment side but I am sure others will, as Arthur has done.
You will probably find that you start to see and chat with other people there regularly as Steve has his treatments, so the waiting time passes quickly. When Mick was having chemo the unit was too small for wives, partners etc to go with the patients, however he met another chap who seemed to get the same appointment times as him. They used to chat, flirt a little with the female Nurses and share daft jokes with the male ones! They both had the undivided attention of the Volunteer tea lady who spoilt them rotten.
I wish you all the very best
xx
Mo
User
Oh dear, things have not got off to a good start! Arrived for the appointment to be told it had been cancelled last week and the sessions re-scheduled - apparently someone should have told Steve!!
Lovely radiographer came to see us full of apologies and told us to make a complaint at the pals office, which we did. PALS office not impressed that he wasn't offered a refund of travel expenses either.
Now sitting In Starbucks watching the rain, with a very angry Steve.
Now treatment will be starting on 8th September, I hope!!
Maureen
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Arghhhh I know the feeling. Keep calm and carry on. Xx
User
Chris
We've adjourned to Weatherspoons for a spot of lunch and a consolation glass of vino.
Decided to make the best of a bad day so Steve is taking me on a guided walking tour of the City of London.
Although I was born here I'm learning a lot :-)
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
I'd love a " cabby " to show me round London. What a treat ! Sorry if that's a Non-PC term haha. X
User
Anytime Chris when your're next in London, Steve says he won't put the meter on honest ;-)
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
How annoying is that.
Especially when you're all "geared up" and ready to go
Still, the consolation is Wetherspoons, John's favourite pub.
In fact he is there now enjoying steak Tuesday and pint of Abbot
We can't control the winds - but we can adjust our sails |
User
Hi Maureen,
That's so frustrating for you. I'm so sorry Steve is being put through this. If he's anything like me, he would just want the treatment to start after all the waiting.
Hope you have a nice day anyway. We can send you good luck messages again next week!
Steve
User
What a bum*er Maureen very annoying, I hope you enjoyed lunch and your walk around the City - I work in St Paul's!!
User
Hi Maureen and Steve, sorry to hear the RT put back, very annoying.
I am at the stage that after 5 attempts to complete my CT scan and mark the tatoos, I finally got the go ahead yesterday for my RT to start on the 14th Sept so fingers crossed for then. I have been waiting since mid-May and it is really frustrating as all I want is to start RT and hopefully blitz the PC out of sight.
I hope things go better with your future appointments
Regards Chris/Woody
Life seems different upside down take another viewpoint
User
I meant to post this yesterday(Wednesday):
Steve got a phone call from St Thomas' in reply to the complaint made about the cancelled appointment on Tuesday. He has been offered a refund of his travel expenses and has been asked to visit the appointments manager when he's next in the hospital for a personal apology. It doesn't get him a days' wages back (he's self employed) but he's pleased that the complaint has been taken seriously and acted on promptly.
He was not in his happy place on Tuesday having built himself up for day 1 of RT, and had hardly slept Monday night so his nerves were shot before we got to the hospital! Luckily for the hospital staff I, not them, was subjected to his ranting for several hours but after 29 years of marriage I have the ability to "zone out" 😉
C'est la vie, there will be a feeling of de ja vu next Tuesday!
Thanks for your kind wishes
Maureen x
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Originally Posted by: Online Community MemberI meant to post this yesterday(Wednesday):
He was not in his happy place on Tuesday having built himself up for day 1 of RT, and had hardly slept Monday night so his nerves were shot before we got to the hospital!
Luckily for the hospital staff I, not them, was subjected to his ranting for several hours but after 29 years of marriage I have the ability to "zone out" 😉C'est la vie, there will be a feeling of de ja vu next Tuesday!
Ah, Maureen, isn't that what all us loving wives and partners are about.
If he can't rant and rave at you after 29 years, and know that you understand, who can he rant at !
We can't control the winds - but we can adjust our sails |
User
With a sense of de ja vu I am posting again after last week's' appointment fiasco!
Tomorrow, Tuesday, is radiotherapy day 1 of 25 (groundhog day) Steve has taken himself off to bed already, I think the nerves have started, but fortunately it's not an early start for us - a bonus of living in the London "burbs" and a 30 min train journey to St Thomas'.
On the plus side he will be collecting his refunded fares, £9.80, so that should cover a couple of coffees although we might need to share a muffin :-).
Maureen
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Hi Maureen,
Good luck to Steve today, hope it all goes to plan this time! Enjoy the muffin - Blueberry is my favourite!!
Trish xx
User
Its happening this week for sure Maureen -- for both of us. Best wishes today
User
Hi Maureen,
Please wish Steve "Good Luck" for his treatment. I found it a relief to finally get it underway, it must be for you too.
I hope everything goes well.
Steve x
User
Hi Maureen and Steve
Best of luck for today
Arthur
User
Yah, job done and now on our way home. It reminded me of dropping our daughter off to school for the first time! It'll take a few sessions for him to get into the swing of things and unfortunately tomorrow he has to be at the hospital for 7.55, as he's going to work after he'll be driving so that'll mean a 6.15 start for us.
I offered a slap up lunch treat but he's opted for "pie & mash", I'm sure only the Londoners on here will see the attraction in that, liquor not gravy! :-).
Thanks for your good wishes
Maureen x
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Yum yum! Manzes is the place to go
User
Great Maureen , so pleased for you both at last . Will his Taxi be glowing on winter mornings x
User
Originally Posted by: Online Community MemberYah, job done and now on our way home. It reminded me of dropping our daughter off to school for the first time! It'll take a few sessions for him to get into the swing of things and unfortunately tomorrow he has to be at the hospital for 7.55, as he's going to work after he'll be driving so that'll mean a 6.15 start for us.
I offered a slap up lunch treat but he's opted for "pie & mash", I'm sure only the Londoners on here will see the attraction in that, liquor not gravy! :-).
Thanks for your good wishes
Maureen x
Jellied Eels next! Glad it went well!
User
Arthur - absolutely, with chilli vinegar of course!
Chris - if he is it'll save on the heating bills :-)
Pablito - jellied eels are lovely but it's not very ladylike spitting the bones out!
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Hi Maureen,
Hopefully Steve's getting into the routine a bit now. Is it St. Thomas's where he's having the radiotherapy? I've been working across the water at parliament on the terrace today. I was thinking of you both. Did you see all the boats on the water at 12.30pm? Could have met up for chat.
Anyway,I hope everything's going well.
All the best.
Steve
User
Glad you re out and about Steve. PS You mail box is full !!
Maureen when I was a child, many many moons ago, one of us children would be given a bowl and we would have to go to the pie mash shop, collect the pies and mash all covered in green goo.
I hated the look and smell of the stuff and have never eaten it, although pie and mash, now you're talking!!
We can't control the winds - but we can adjust our sails |
User
Hi Maureen,
Glad it's going well, you will get into the routine quick enough xxx
User
Hi Steve
Yes Steve is having his radiotherapy at St Thomas' so we were on opposite sides of the Thames today, although I do work 10 minutes walk from the Houses of Parliament so if you're ever going to be nearby again let me know. Sadly I didn't get to see the boats, as I arrived late for work I didn't want to take the P with a long lunch!
I hope you got some good photos.
Maureen
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Hi Maureen,
I'm in London quite often (five times in the last eight days), so it would be good to meet up sometime for a chat. I used to work regularly for the Forensic Science Service when they were based just across Lambeth Bridge, not far from St. Thomas's so I'm quite familiar with the area.
Today I was working for the Home Office photographing an award ceremony. Presenting the awards was the Home Secretary, Theresa May which was good because I know her quite well because she lives in my area and I've photographed her many times. She's a good subject because she usually does most things I ask her to do because she realises the value of a good photo. Anyway I got some decent pics today.
Anyway, hope Steve continues with the RT ok and doesn't suffer the problems I had after two days treatment. I had very early side effects, not being able to pee properly (corrected by tamsulosin tablets, which I still take now).
Hope all goes well.
Steve
Edited by member 10 Sep 2015 at 02:42
| Reason: Not specified
User
Well I'm back from a short break from the site, there's a lot to read through after a week! This conversation should now be called "End of Radiotherapy" as Steve completed his 25 sessions on the 9th 😀. I appreciate that individuals react differently to RT but thought I'd put up a short summary of Steve's treatment:
Weeks 1&2 - not much change apart from weeing more often, well there is an additional 2 litres of water a day to get rid of! Week 2 starting to get up in the night, no previous occurances of this - apart from after a long drinking session! Urine flow reduced.
Week 3 - getting up several times each night, fatigue has kicked in probably a combination of lack of sleep and treatment. A sudden onset of diaorhea, but this this started on the day of his 3 monthly hormone injection and flu jab so may be a reaction to either of these. Started to get burning / stinging when weeing, started on cranberry juice. Wiped out for a couple of days but picked up again after a break from work, went back but reduced hours - the good thing is he's self employed so can stop when he wants but the bad thing is he's worrying about not earning 😔
Week 4 - getting up 4 times some nights, fatigue is still an issue. Burning / stinging is not always present but he has mentioned it to the care team. Now weeing every 20 minutes during the day!! Flow problems continue.
Week 5 - hospital have tested for urine infection but that's clear - hurrah! Back to getting up twice during the night, burning / stinging has eased slightly, back to weeing every 40 minutes.
End of RT +1 week - last couple of days getting up once each night, burning / stinging much reduced, flow a bit better and now weeing about every 45minutes during the day.
The treatment team did explain that things might get worse before they get better but as Steve had no previous problems he may get off light. 🙏
Steve will have a combined RT / brachytherapy follow up appointment as brachytherapy is planned for 18 Nov - that will be another story!!
Thanks for of the good wishes during the RT cycle, they have been greatly appreciated.
Maureen (&Steve)
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Superb post Maureen
Very informative thanks and keep us up to date a bit further down the line .
Best wishes to Steve and great that it went so well for him
PS Taxis cost enough as it is without the driver keep getting out for a wee ( meter running of course )
Chris
User
Hello MLJ,
thank you for posting your and Steve's experiences. It's encouraging to know that Steve was able to work during his treatment? I suppose you are now patiently waiting for follow-up appointments.
On Wednesday, my wife and I go to see the oncologist for the first time.
My peeing symptoms were and are awful. On some days, I can visit the loo up to 22 times during the day. At night time I can go up to 6 times a night, although the average is 2 or 3 times a night. Not very funny, but that's how it is.
Frank.
User
Hi Frank
Steve easily fitted his working hours around his appointments, I went to them all with him bar one as I work very close to the hospital (and have a lovely boss who let me make my hours up by starting earlier / working later) - I was usually out of the office for about 2 hours.
The only thing that effected Steve working was a bit of fatigue as the weeks went on - oh and frequent weeing, not great when you drive a taxi for a living but I believe he now possesses a mental map of public toilets in London!
Good luck with your consultation.
Maureen
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |