Head keeper Stewart. Hi Dave looks like you and I are at the same state.i have just had my 9th treatment, 9a.m. Today got home at 10a.m.at 11-30am I to couldn’t hold it any longer but soo went to the loo. I am still here and it’s now 3-15pm blood clots are my trouble as soon as i try to get off they come again I have had the shivers for 2 hours uncontrollably they have now eased off. This is normal for me from the start, my wife is continually bringing me drinks to flush out the bladder. Normally last from 7 to 16 hours then have no control for up to 2 days I got an infection after the 7th sitting went to the doctors got antibiotics what just cleared it in time for the next session. I don’t diet at all but exsersise getting up 5 ish taking 4 Gundogs out across farmland then feed birds the rest of the day walking miles the plus for me is I can drop my pants anywhere anytime. Carrying a bag of corn each time to cover strips I am 74 years old this year you can’t drive the fields as they are sodden and have been since September. Good luck with your treatment plus I wear a male  Tena nappy lined with a babies nappy so any soiling I change the babies nappy. Good it’s 4to talk. Going to try to get off the loo now and stretch my legs. Good luck,Keeper.

Hi all i had 15 bcj treatments & it was very painful & difficult to take

but im now 2 yrs clear & i feel good at 74 yrs old.

My advice is just stick with it & i hope you will all get the results that i got.

Ive had 4 follow up Cystoscopies which are nothig really.

Good Luck

Can I just say what a relief it is to have found this site, and to know what I'm going through isn't unique?

I'm starting my second maintenance burst next week, that'll be numbers10 to 12, and frankly rather dreading it all as my poor nether regions still sting like hell.

Non-muscle invasive, TURBT Dec 19 (saw New Year in leaking blood into the catheter bag in Cheltenham hospital....).

The pain from BCG does seem to be cumulative, the first 6 were fine, but the next three knocked me back and I'm still reeling. However, fear of losing treatment slots during Covid prompt me to carry on.

I suppose Churchill's mantra to "keep buggering on" seems fitting, in addition to deep gratitude for surviving various health crises these last three years, including a couple of cardiac arrests.

But by God, the old 'pleasure ground' has certainly become a torture chamber.

No helpful advice to share, just a self pitying whelp, sorry....

Good to learn you are receiving treatment.  I've had none since last November!  Told can't have BCG until cystoscopy.  Can't have cystoscopy due to Covid-19, and even then I'm at the back of an ever growing queue.  I have to say I find the situation totally and utterly unacceptable. A death sentence and there's nowt I can do about it.   

I'm in Sutton Coldfield and the hospital where I used to go to was declared 'Hot' and everything moved to Solihull miles away, which is deemed as ‘Cold’.  I was sent to a private hospital in Little Aston on the NHS in Jan 2020 but they faffed around so much by the time I was seen by a consultant and a cystoscopy arranged the virus and lockdown was on us and all cancelled.  NHS cancelled contract with Spire. 

Any others having same experiences as me? 

Oh Dhuk,

I'm so sorry to hear of your problems getting treatment, that must be SO difficult to bear.

I can only suggest routes which you may have already tried: uro-oncology keyworker? Formal letter to Foundation Trust CE? Local paper? MP? (this can be more effective than is often appreciated?).

Having bladder cancer is bad enough, feeling abandoned must be insufferable.

Compassion to you....

Thank you kindly for your sentiments PhiilipCC.

Yes, for sure, the NHS has abandoned me despite the billons being poured into it.  For me, it might as well not exist.

Last year I joined a cancer group at the local Baptist church advertised on the Macmillan Cancer Support website.  The group offered “befriending”.  As a widower in my 74^th year living alone and no family (all dead except for a sis-in-law who lives in Turkey) ‘befriending’ was welcome.  After the lockdown in March all meetings of the group ceased.  I did suggest in an email to have Zoom meetings, but heard nothing more.  I later found out “core members” of the group (whoever they are?) have been having ‘Zoomins’ from which, for inexplicably unknown reason(s), I have been deliberately excluded – another abandonment.

Needless to say I am suffering from depression in the form of chromic procrastination.  I put everything off on an endless I’ll do it tomorrow basis.  Mañana on steroids.  Of course, with so many ‘jobs’ not done fuels a steeper slide into depressionsville.

I’ve been meaning to contact my MP and the Daily Express, but I’ll sort it tomorrow…..

PS.  Bizarre that I can go to the dentist and have dental implants and new crowns and posts, yet my cancer treatment has been banned

PPS. The dentist is remaining open during the latest lockdown, and I’m very glad they are.

To all you patients having your bladder inspections delayed because of the covid-19 situation.

I was due for my 6 months Cystoscopy in early May 2020 but it never happened, to be fair my Urologist l did phone me & went into full details as of if it was absolutely necessary on this May date to risk me catching covid-19, we both agreed that as I was still having zero problems that my next bladder inspection in this Nov month will have to be done, so don't lose heart if you don't hear from your hospital, just keep phoning the Urology Appointments desk & you will be able to discuss with them when you will get a definite appointment.

Good luck.

Glad to report I've had the long overdue cystoscopy.  No probs found.  Waiting for BCG appointment now.

Great news Dhuk, hope all goes well for you!

Today is the first anniversary of my bladder cancer diagnosis. A week ago today I had my 12th BCG treatment, the end of my second maintenance phase.

I have to say the continual pain is fairly crippling, and at the moment the prospect of the third maintenance phase next Spring is appalling. I get by knowing the stinging pain will subside; it took a fortnight after my second maintenance phase.

The only point of this post is to howl. My apologies, not very noble....

Hi Philip. So sorry you are part of this horror. I was diagnosed with tumour in bladder 10 yrs ago. Since then apart from 3 single Ta tumours in the 1st 5 years, I have been gloriously cancer free till last june when I had 5 TaG3 tumours. I had 6 Bcg in August. Was fine. Now just had my 3rd of 3 maintenance. 10 days after my last I get horrible racking discomfort in my top half AFTER I have urinated and need to go non stop. So I am dreading my next maintenance. My wonderful consultant tells me the effects are cumulative. He also sd 'if it is uncomfortable it means it's doing some good'. I sd 'is that true?'. He sd 'no but we tell people that because it makes them feel better'!

Also my consultant who is a professor sd there has been some research showing that an 18 month course of BCG treatment and maintenance is equally as effective as a 12 month course. Anyone know anything about that? Would that it were so.

Also my consultant who is a professor sd there has been some research showing that an 18 month course of BCG treatment and maintenance is equally as effective as a 12 month course. Anyone know anything about that? Would that it were so.