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

Sounds just the same as Ronnie had last 24th dec.He was sent home with a catheter in and he had a turb x the stent in. He was really put through it that day. I was sat 4 and a half hours waiting for him to come out. He had the catheter in for 17 days and it should have only been in for 6. I ended up phoning the hospital and putting my foot down and threatened to speak to his consultant about it. He even had to go to another hospital to have it checked as the district nurse thought it was backing up. She phoned for an ambulance and they said it would be 4 hours. 8 hours later we got a taxi.I have  never seen Ronnie so frightened. They flushed the catheter out checked his bladder for urine and he was good to go.  We got another taxi and got home at 12.45 am the next morning. They had him in the next day and took it out and he was fine. This is the only thing he is not looking forwards to when he goes back for the camera up  Cos when they put the camera up if they see a tumor they take it out and where back to square one. Doesn't bear thinking about. Where ever you are going have a good time and i will be in touch next Friday 

Love Sylvie xx

What a nightmare experience let's hope both are men are found to be tumour free

We are off to Chester having afternoon tea at the Grosvenor but as it's full we are staying at another hotel I'm also scheduling in a trip to Cheshire oaks outlet village The situation at Manchester airport is horrendous so planned mini break to Florence postponed to September and then depends on dates at hospital 

Going to Scarborough on Sunday just for the night I fancied a trip to the seaside and Blackpool  and St Anne's tho nearer dont do it for me altho they are both very popular The spa orchestra are doing a teddy bears picnic concert so might take my ancient teddy bear and go to listen 

love

Celia x

ENJOY

XXXX:

Hi Celia,

Ronnie had his colonography today to check on his bowl because of the divicular decease. He was in and out in 30 mins. He was ok but they said the results would go back to the doctor that asked for it so don't know when that will be. He got a date for his colposcopy on the 24th Aug. There sending him to a private clinic nearer where we live so we are well pleased. They sent an email with the date and time on and said a letter was in the post and all the prices was on the net for this  private clinic and the procedure Ronnie is having was £1300.So that makes it 6 week since he had the last BCG. So waiting for the outcome of that later. Waiting for the out come of the urinary tract ETC with contrast from the 21st July. So don't know when we will here about that. It's enough to send you crazy. Anyway i hope there not going to do anything else to him till we here the results from the cystoscope on the 24th Aug and lets have a bit of peace. 

Hope you had a nice birthday and your trip to Scarborough was good. Let me know how your John goes on with his last dose. Take care until the next time

LV Sylvie xxx

Glad things went ok It seems never ending at times I know 

It's good that you have the colposcopy nearer home one less thing to stress about 

Off to Chester tomorrow Scarborough was nice but the spa cliff lift was out of action bit of a hike up the the esplanade but we took it slowly 

Take care

Love Wilbert x

Been in that lift many a time. Enjoy Chester.

Speak later 

Lv Sylvie

Hi Celia i sent a reply but i don't see it on the chat. So i will try again

Ronnie got a copy letter from our local doc from the urology dep. It said that he had is 6 BCG and  was awaiting the cystoscope to see if the BCG has worked. Also that he would be back for further treatment at the end of Oct. The letter was dated 16/7 the day Ronnie had his lat BCG. Why would they say he would be back for further treatment when he doesn't go for the cystoscope till the 24th Aug. Don't get it. Any ideas.

Love Sylvie xx

Thanks xx

Hi Celia

hows things with you.

we got a phone call from the cancer nurse and she said she was putting Ronnie in for a biopsy on his ureter. I told her he was in for a camera up to check how the bcg went and she said she would cancel that and he could have both done at the same time. So that will be in 2 weeks time. She said he would have to be put to sleep for the biopsy so that means another 4 hours waiting about and a £40 bill for the taxi there and our niece will bring him home. and i always give then £20 for the petrol cos they come a long way and petrol dear up here. Apart from that we have herd nothing from the other tests. so just sat in the house with 2 fans on. I cant wait for Monday it's forecast rain and cooler wipeeeee.

Take care 

Love Sylvie

Glad they are going to do both checks together but the waiting is ****

We were fortunate the hotel had aircon which was very nice Not too bad when we got back as all curtains and blinds had been closed but not looking forward to tomorrow when forecast is even hotter why isnt English heat as enjoyable as foreign heat Think our fans will be out later 

Sorry about delay replying but I've just answered your private message 

Love and best wishes 

Wilbert xx

Glad they are going to do both checks together but the waiting is ****

We were fortunate the hotel had aircon which was very nice Not too bad when we got back as all curtains and blinds had been closed but not looking forward to tomorrow when forecast is even hotter why isnt English heat as enjoyable as foreign heat Think our fans will be out later 

Sorry about delay replying but I've just answered your private message 

Love and best wishes 

Wilbert xx

Hello there

I had to go to our far away hospital yesterday about my hands. I am under a plastic surgeon cos i cant bend my fingers very well. I asked the doc why the heat is affecting my hands so bad and he said it wasn't the heat it was the humidity.  Last time i went he put injections in my index fingers but it only lasted a few week so this time i refused them. So they did an X-ray on both and there sending me to another hospital nearer home to get some splints made and some winter gloves.Dont honestly think it will work but i will give it a go. I have been  going  to the same hospital for 7 years for injections in my knees every 5 month cos i need 2 new knees but i wont get them done. The injections are great the pain goes withing minuets so i will stick to them. Ronnie is fine just waiting for the dreaded big white envelope coming through the door. We are hoping that he will be in for his procedure in 2 weeks  so when we get the outcome it will be before we go to yellow tops in Sep. Where away for 6 days and it cost quite a bit of money so we don't wont to miss. it. Ronnie looks forwards to the fishing and i look forwards to the peace and quiet and the post man. He has had all them tests and scans and no one has given us the outcome. I bet we will find out about them all when we go see the consultant and he tells us what they found and what they wont to do. Not fare on us though is it. Anyway we are making the most of the time before them. The heat is bad here in Selby. 31deg in the living room and we have 2 fans on.  Just cant wait for Monday for it to cool down and a bit of rain

I think it's a good idea you two having trips away and getting away from the house. I know you always have to come back to it but been away for a little wile and different scenery makes it a bit better. I was thinking they might put Ronnie's stent back when he goes in for the tests. Will they put your John to sleep when he goes for his test? 

Yes keep the blinds and curtains shut. We have been living in the heat the way we used to live in Spain. We had to cope with 40 odd deg many a time. We always copied what the locals did.Fans on and doors open at 6pm to blow the hot air out. 

Nice to get an upgrade. We used to always get one at the Southlands in Scarborough no extra charge. Everything as come to a holt with the hols because of all the tests ETC that's why we don't wont to have to cancel the fishing trip. Well i will go do the tea Salad again getting a bit sick of it.

Take care and stay in touch 

Love from Sylvie

xxx 

Sorry you are having problems I have arthritis I my right ankle and right thumb joint Steroid injections are only temporary help so  I just have to put up with it Sounds like you are like me you just get o  with it

Yes John will have a general for his procedure Like you cold meats prawns salmon and salad again  Roll on Monday 

Love to you both 

Celia xx

Hi Celia i have just been eading bout your Johns treatment and in America they call it Jelmyto.

It's an interesting read. I put in does jelmyto get rid of ureter cancer. Try looking it up and see what you think. If they say my Ronnie has to have his kidney and ureter out i am going to speak up about the Jelmyto.

Love Sylvie

xxx

John is having liquid mitomycin put into his bladder in the hope it will penetrate the ureter and kill the cancer or cause an autoimmune response like bcg does

The Jelmyto is put directly into the ureter Unfortunately it isnt licenced for use in the UK only the USA  Nor when last read about were the makers planning to apply for a licence Sorry its not good is it Let's hope Ronnie is clear altho thr kidney removal is a big OP it is a life saver We were hoping it would be a possibility for John Speak to the surgeon he may know if there is a possibility of the makers applying for a licence to use it here 

Love. to you both 

Wilbert xx

I read that the jelmyto is what John is having only the name is different in the states am i wrong ?

xxx

Yes there is mitomycin  liquid which John is having and has been licensed and used to treat bladder cancer for quite a few years and Jelmyto Jelmyto is new it's a gel not a liquid and can be put directly into the ureter It was only approved for use by the FDA in the states last year Sadly the manufacturers have no plans to apply for licences in any other countries Ita depressing 

Love

Celia xx

ok i understand know. But never say never xx

Agree Mention it to your consultant and I will be mentioning it to ours xx

i will 

xxx

Hi Celia, Do you think Ronnie will have to go for a pre op before the procedures .

Love Sylvie xxx