Bladder cancer

Hello Steve E and welcome to the group. Plenty of friendly and advice and support here. I went a different route, so no personal experience of BCG, however, reading many similar posts here, it does seem that he treatment does have a build up effect and can affect some people more than others. Keep a check on your temperature to check for infection and stay well hydrated. I hope it goes well. Best wishes.

Hello Steve E, I sailed through the 1st 6 BCG installations without too much hassle in September 2020. The following 3 in December 2020 also were not too bad. However after the next 3 in March 2021 started to leave their mark. I had 16 weeks of feeling uncomfortable off and on particularly in the mornings. It did clear on its own and I felt back to normal. The nurses put it down to BCG cystitis. I had a further 2 installations (half doses) last September and again that kicked off the cystitis again. From October to now I have suffered bladder spasms/pain. I had a cystoscopy just before Christmas and they confirmed my bladder although clear of any cancer was very inflamed.

I was recommended to have an 8 week course of Ialuril that was to help the healing process. Currently I have had 6 out of 8. It has stemmed the extreme pain I had but I still suffer from some morning pain and does disturb my sleep patterns. I keep my fingers crossed that it will eventually go on its own accord. For now my BCG treatment has been halted. Everybody reacts differently to the treatments so I'm not necessarily a typical patient. I wish you well with your further treatment.

Jacaranda 07

Thanks for responding. 

It keeps me awake at night as I keep thinking to myself this is all to easy something is bound to upset the apple. I had bladder spasms after they took the catheter out after my surgery. I must admit I thought they were horrendous at the time. I had never experienced anything like it my life. What with and being in a lift and suddenly realising that I was desperate for the loo and had only been minutes before. When the doors opened I was glad the toilet was right by the lift. I must admit I didn't like the bladder spasms I left me feeling quite ill . My fear is that I will have to go through it all again as surgeon said there is a very good chance the tumor will come back. 

Hello Steve E, it is indeed difficult not to feel anxious but rest assured we all feel that way at times. You are on the right forum here because everyone has their own experience and it is interesting to hear other people's stories. I find it comforting to know that I'm not alone in my worries.

I personally just want to live life as close to normal despite some of the pain and limitations in how far I can walk at times due to the treatment. I remain ever positive that the pain will dissipate as it has done in the past. Suffering sleep deprivation every night doesn't help, I go to bed anticipating some degree of pain in the morning. I do take painkillers but they seem to have very limited effect. My friend is water and like the majority of people in our position have altered my diet accordingly, alcohol now a big no no.

It's difficult to make plans because my bladder seems to have a mind of its own. We get invited to friends for coffee so you literally have to give it thought before saying yes. Of course drinking so much water means it has to come out at some point so always mindful of where toilets are. I'm sure you'll adjust to your new position, just try to keep off the negative thoughts and concentrate on going forwards.

Have you got a MacMillan toilet card/ credit card sized with their logo on clearly, you show it to eg shop staff who will then usually let you use the staff loo. My husband finds betting shops very useful as they all have loos albeit sometimes grotty Think you just need to phone and they will post one out.

Denby.

Thanks Denby, no I didn't realise that. I will make efforts to do just that. Always handy to have some back up in an emergency, good to have something that takes away any anxiety.

You can also get radar loo keys so you can access disabled loos.I got mine from the local council offices several years ago.Best wishes Jane

Thank you. Do you know if they work only locally or nationwide?

Thank you for replying 

Yeah it is about adapting to your new circumstances and knowing where toilets are when you are outside. I do have a radar key my wife got me from the tourist information office in town. So that does take a lot off my mind. She makes me carry a five litre bottle and a blanket in the car incase I get taken short and can't find a toilet. Which may be embarrassing but it does the job. We are trying to sort my diet out and look at a lot of recipes that my help.

But I have to be careful to a degree because I have type 2 diabetes. So we tend to go for fresh salady bits and fresh meat instead of processed meats and foods.

They can be used nationwide.There is  great British public toilet map online that shows the locations of the loos.