Bladder cancer / BCG treatment a lonely misunderstood journey.

Welcome Debstar3188, all I can say is you have landed up in the right place to be understood. I have heard an analogy which chimes for me. "BCG is like weedkiller on a path, if you don't keep retreating the path the weeds are likely to pop up again". Perhaps people around you might understand better through that comparison.

Best wishes anyway, Denby

Hi I am also having bcg treatment  I have had 6 induction treatments and go for first 3 maintenance treatments starting August 18th .. like you this will be the course for 3 years as I have cis which is classed as grade 3 .. I really try not to think too much about long term and try to take things day to day ..sometimes it can be hard but then I count my blessings that it was diagnosed .. I also had diarrhea after bcg treatment but I think that can be a side affect .. I will keep in touch you are doing so well to get this far it is not an easy journey take care love Tina x

Just a thought... always check with your favourite pharmacist... it is often helpful to take 'gut-friendly bacteria' capsules to put your insides back to rights after having to take meds that cause diarrhoea. I had reason to phone optibac as my OH has been put on some very serious antibiotics for life after major sepsis last year, I found the company very helpful and extremely responsible as they would not even suggest a product until I had called his orthopaedic team to get the OK. 

It is important to have your gut working normally as the good bacteria, which you may lose through diarrhoea, make and help you absorb various vitamins etc which you need for good health.

By the way the point of capsules is to not dissolve until they are past your stomach. Normal stomach acid is designed to kill bacteria, so the benefit of so called gut friendly foods like yogurt drinks is doubtful

Hope this might help,

Denby

Hi Debstar, yes I can relate to what you’re  saying, I too was grade 3 and had BCG treatment but that was 9 years ago and I’m still having 6 monthly check ups, people seem to think you’ve beaten cancer where in reality you’re only clear till your next check up. I don’t think about it much now but I do know it’s one of the most recurring cancers and one of the dearest  to treat. By the way I haven’t had a recurrence and as of now doing well xx

Hi Denby, thanks for you reply. One of the urology nurses also used the weed killer analogy and who a consultant viewed himself as a gardener!

I already had suspected IBS before my tumour was detected and have been taking Actimel for a while, but I'm exploring more gut health and have recently purchase a book Gut by Giulia Enders, so interesting that you have been exploring this too. Thanks for the advice.

Hi Tina, thanks for replying and sharing some of your story. I put a lot of my thoughts and emotions about my diagnosis on hold last year due to the pandemic, working, kids, husband leaving me the week I started cancer treatment etc. However, a few months ago all the repressed emotion came out but I'm doing ok, I know like yourself, I count my blessings that it got detected by chance June 2020 (I was actually having my ovaries checked but the sonographer picked up the 'abnormal vascular lesion' in my bladder).

Bladder discomfort not to bad after yesterdays treatment, maybe because I have taken a break from the whisky! 

Hope all goes well with you next batch of treatments. Deb x

Hi Sue, such positive news that you remain tumour free, really pleased for you.

It's a year since my tumour was removed, so I hope in time as I have more clear cystoscopies, it will be less emotive. Doesn't help that I'm also on 'the change'! 

Did you experience any persistent fatigue? (hard to know if mine is long covid, BCG, anaemia, hormones or working and studying with kids through a pandemic - probably all of them!).

Hi yes I agree this is something we have got to live with and get used to x I am 65 and quite fit and active luckily..I am preparing myself for bcg treatments and lots of check ups but hopefully  like you I will have positive response x I was diagnosed in December 2020 and felt at the time this is my life over but learning so much about bladder cancer on the forum has helped me so much to come to terms with it and to try to keep  being positive x take care all love Tina x

Debstar I only had fatigue on the day of having BCG and maybe the next day, I would have thought all you’re going through plays a big part to it even without adding BCG to it. I didn’t have the full 27 as at that time there was a world shortage so just had 15. and still cancer free. Hope things get a bit better for you xx

Thank you x you really have had so much going on this past year .. we deal with so much stuff for so long then we find we can't deal with it anymore .. hope things will work out for you with the bcg I also have bowel problems on day of treatment and quite painful when peeing but usually only lasts till early evening if I have morning treatment xx take care and try to air your feelings on here we are all on this journey together xxlove Tina