My husband has the opposite problem He was treated successfully with bcg for bladder cancer and he has been clear for 6 years Following blood appearing in his urine a couple of months ago a tumour was found in his ureter Kidney and ureter  removal  not an option as kidney on tumour free side has low function due to previous  kidney stones Consultant reluctant to do anything  other than monitor and laser recurrence whilst it remains  in ureter but it will at some stage get out and the treatment will be palliative 

Would you let me know what treatment you have had and the details of the trial

Good luck with you future bladder treatment 

best wishes 

Wilbert

Hi Wilbert

Just to let you know that my Ronnie did really well on his first BCG. In and out in 20 mins. Did not feel a thing and had no pain after at the loo. So i just hope the next one on Saturday goes as good as the first. He managed the 2 hours and was told to drink after the first hour. We managed to get home in 50 mins so all was well. Thinking of you and David. 

Take care and stay safe

Regards Renny

Thank you 

Good luck tomorrow Hope Ronnie's treatment goes ahead Keep me posted John's treatment also relies on his urine being  being infection free 

Absolutely  agree the waiting is awful does my head in too 

love 

Wilbert x

Hi, just got back from the hospital and they wasnt going to give ronnie the BCG as there was a micro of blood in his sample but no infection. She asked if Ronnie had any side affects and he hadnt so she went to see the doctor and he said give him it. She said that the BCG does that to the lineing of the bladder but should not have further BCG because if there is an open wound the BCG could get into his blood stream and he would end up in A and E. She said he had the same micro of blood last week but the head nurse never said anything and it was given last week. So today he only has to have the BCG in for 1 hour then to the toilet. Just got home in time for that. Did your John ever have trouble like that when he was having the BCG. 

Love Renny

John occasionally had  microscopic blood and or lycosytes in his sample which indicate low grade infection but they never said he couldn't have the bcg They always asked if he felt well

Wr always had the same nurse to do the treatment and it was all she did Not my idea of a great job but takes all.sorts So she was obviously very experienced and on one occasion John said a Dr came in to ask her advice

Think your team are being ultra cautious 

I have seen on Macmillan  bladdercancerforum people recommending Robinson's lemon barley water to help calm things down John always drank and still does lots of water 

love 

Wilbert

Thanks for that it's made me feel better that other people have had the same symtoms. Yes the nurses really know there stuff and we have every faith in ours they really look after Ronnie and me. They always ask me into the office with Ronnie for a chat before he has the BCG. When we go in  I am praying to god they are not going to say HE'S GOT AN INFECTION again. I really dont wont him to miss any more. It's a long way to the hospital IE 42 mile return. But we wouldnt wont to go to any other. The other hospital nearer is York but there is only 2 mile in it so we picked the one we know best as we are from Leeds originally and he is still under Mr xxxx from when he had the Prostate cancer 19 years ago. Ronnie has his PSA done every 6 months and i phone his secretary and she puts the reading on Ronnie's account for Mr xxx to see. That way we dont have to go to Leeds and take his time up. It's a good set up and we know that he is still been watched over.

I make sure Ronnie drinks 2 50 mil bottles of water every day. So he doesnt do too bad with the 3 big cups of tea and orange juice and 2 coffee's a day. 

Well off to make the tea. We still eat at Spanish times.

Take care and stay safe.

Love Renny

I remember our nurse saying bcg makes the bladder very angry and inflamed 

It's good to stay with a consultant and staff you know continuity is  so important 

Enjoy tea 

love 

Wilbert x

Agreed

Goodnight

From a very tired Renny

Hi Wilbert

Ronnie had his 4th dose of BCG today and all went well. No infection but still a micro of blood in the urine but not a problem. She said they would be conserned if there was clots so very pleased he got that over with. She gave hime a blood test to do at our little blood bank thats in our  hospital in Selby. It's a walk in one so just take a number and sit and wait. I dont know why she wants that doing. Most likely for the consultant for when he goes for his camara up after his 6th dose. 

I noticed the picture of you and your John on your profile,  it's lovely. I will put one of me and Ronnie on mine if i can find one. 

Let me know how your John goes on wont you.

Take care. The covids back 

Love and best wishes 

Renny

Hi Renny

John

had his first mitomycin yesterday and all went well

It hasn't irritated his bladder like the bcg did but he had a headache and felt tired Think mainly down to the  stress of not knowing how it might affect him Its put in the same way as the bcg I'm glad Ronnie is getting on with it ok

He was out on his bike twice last week which he enjoyed 

The photo was taken on 1st June in Playa Blanca our 54th wedding anniversary I'm not great with technology and was playing about as I saw you had a photo on

Take care Must admit I'm now wearing a mask sometimes if I think it warrants it

Best wishes 

Wilbert xx

Hi so very pleased he has no side effects to speak of lets hope it stays that way.

We have been to playa blanca for the day. We went over on the Fred Olson ferry from i think it was furaventura. Nice place very quiet.

Off to do the washing while Ronnie has a nap.

take care 

Big hugs to you both

Renny

Thank you

Great photo of you both 

Hugs back

Wilbert  xx

Thank you

Great photo of you both 

Hugs back

Wilbert  xx

That was taken on the paddle boat that goes down the Mississippi in memphas.Ronnie is a big Elvis fan and i booked 7 days away at the Radison hotel in Memphas for his 65th birthday. I didnt tell him till the day before. He thought we were going to Spain.We went to Gracelands it was fabulous. The hotel has changed names know but we were right next door to the Peabody hotel and every day at 3pm out from the lift from the top floor came these malard ducks and waddled down a red carpet and got into this big fountain in the foyer and had a swim for ten minuets then went back up in the lift to there room. Unbelievable . Loads of people just went to the hotel to see them and take pictures. 

Great memories

Love Renny

Sounds fabulous Our friend who lives in North Carolina was a Graceland  with his Dad a couple of weeks ago

This time 3 years ago we were in Savannah and had a paddle streamer trip  we flew  up when visiting  our friends in Rhode Island and the year before we were at Niagara on the lake to visit the falls As our friend remarked as it rained when we waited to board the boat "we are getting *** wet thro " It was so funny as she isnt known for using bad language 

You did well booking everything and surprising Ronnie I'm impressed 

love

Wilbert xx

Had a good laugh at the bad word. You have to do it some times. I must admit i do do a bit sometimes to get the anger out of my system. Feel a whole lot better afterwards. I will never be a lady Ronnie says. But he says who cares.

Love Sylvia

I used the word but who ever runs the site substituted **** Gave me a giggle 

It amuses me i do swear and people looked shocked For some reason  people who dont know me well think I am ladylike but it's all a facade 

Love 

Celia x

You have made my night 

x

xx

Hi Renny 

Half way to hospital today (its 40 minutes from. home ) phone rang no mitomycin so getting some from another hospital some miles away appt put back 2 hours Decided to stop at Trafford Centre nearby have coffee and cake using vouchers leave John reading paper whilst I shopped Shopping is my favourite hobby and I'm pretty accomplished lol Artived at hospital Unfortunately mitomycin hadnt Offrred coffee and  biscuits Forty five minutes later carrier pigeon arrived with mitomycin John gave them urine sample which was ok and disappeared off for installation Two minutes later nurse called me to follow her she said pharmacist needs to explain ie I'm not giving you bad news Seems the other hospital which is a major Manchester teaching hospital had sent the wrong stuff Apparently the boxes are similar !! Choice was wait 3 hours or return Monday so its return Monday I asked for assurance that 5 doses would be available so John could complete his course without further complications and was assured yes it would be 

Decided to go out for a late lunch and enjoy a bottle of red wine come home and siesta

I sincerely hope all goes well for Ronnie tomorrow 

lots if love 

Wilbert xx

Oh my god what a day you had. I could not believe you went though all that. Your poor John getting himself all worked up for the therapy and that happened. All that way as well and hanging about. Lets hope THAT doesnt happen again. Let me know how it goes on Monday. Poor lad.

Ronnie got his 5th BCG this morning. No hitches at all this time and just a few shivers when we got home same as last week but he was OK after a few hours. It was his 82nd birthday yesterday and my niece who is deaf and her partner came for there tea. She has a real soft spot for Ronnie so at the moment worried about him. We are going to Yellowtop Country Park on tuesday for 4 days for Ronnie to do some fishing. Also i will try and calm down after getting 2 letters for Ronnie to go for dye ct scans on just about everywhre on his torso. The cancer nurse ordered them. She also sent him for a blood test and she said that was for his kidney funcion ( which was fine ) so that was ok to put the dye in. I dont know if there looking to check on the ureter to see if it has grown etc. Another is for his bladder and another for his bowl as he has divicular dease. So there checking everything. So thats another worry till the results come. 

We are looking forwards to getting the last one over with. They changed his time at the clinic as we will be away and need time to get home. They really have been great with him and me. 

Well i will go make a cuppa although he is sleeping at the moment. Both of us never sleep the night before the BCG. So maybe i will get a few hours tonight.

Take care and regards to your John. I ment to tell you I bought Ronnie a bike ( exspensive) a few years ago so he could nip to the shops ETC. Then i read that rideing a bike for a man is not good for prostate or lower bladder problems. So thats in the garage ready to be sold.( not takeing any chances ) Looking forwards to your next email.

Sylvie x

Glad things went ok for Ronnie and also that you are having a few days away I'm sure it will do you both good 

Waiting for tests is always stressful and you wonder what they are looking for and my mind goes into overdrive Fingers crossed  all is good 

We asked our consultant if cycling was ok and he said yes no problem which was good John had always been a keen cyclist his Mum use to say he should have been born with pedals not feet He was really pleased as we bought him a new bike a couple of years ago that cost as much as our first house 

Wish Ronnie a very happy birthday from us both

Take care

Love 

Celia xx

Hi Renny

jJohn had  his 2nd  mitomycin today no problems Just bit of a headache We were 10 minutes early for the appointment  but they saw him straight away and 10 minutes later he was done and dusted 

He feels ok now after having a sleep this afternoon 

Enjoy your holiday 

Love

Wilbert x