Hi John. I had a letter from the hospital group that was treating me telling me I was vulnerable, (10 -14 days ago) and a week or so later from my local surgery group. I registered with the HMRC system (google it). You will need your NHS number, but don't know if you can do it before you get the letter(s). Try it. I really did it so I could place an order with the supermarket systems, which I had never used before, and get some priority. Lots of refusals but eventually Tesco contacted me to offer me a fast delivery, this Sunday. Sainsbury's still don't recognise me as vunerable, so far.

I suspect we will have to wait some time to find someone who thinks they know if we are more or less at risk because of the BCG treatment.

Hi Dickie 

Thanks for that, I thought it strange that I didnt get a letter. I'll email my GP and Consultant to see what the score is. Be good result if all that pain and agro we went through with the BCG Instilations and cyctisis resulted in it inadvertantly giving us all immunity from Covid19.

Jon

Hi all, I had 15 weeks BCG treatment which finished 18 months ago & the bladder inspections up until 8/November/2019 have shown clear which has been great news.

I also had TB when I was 20 yrs old & I had 2 yrs of intensive treatment which I also came through that major illness.

I'm 74 yrs old now & I hope my immune system can ward off this virus .

Hi Jon.

Thanks for your interesting reply.

I keep seeing news items where it says also that the BCG treatment that we've had COULD be used as a vaccine for the coronavirus ? but BCG is not a vaccine it's a bacterial treatment to attack such as cancer cells.

Let all hope & pray that it can be of some good use to fight this coronavirus .

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.