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

Thank you James, at least now I know it will eventually subside and go away.Tthe hard part for me has been working and earning a living through this. Luckily I work in the film and TV industry and once on set, either on location or in the studios, a Loo is not far away. I'm still at the stage where I get up anywhere between three and six times a night and I have a much reduced bladder capacity now, with a reduced flow rate. I've still got another year or more of maintainace instilations approximately six to nine depending on the my Consultant, but Ha Ho, I'm one of the lucky ones with a non intrusive tumour and I'll be going onto a different immunothearpy drug in May, instead of BCG. That will be interesting and I'll let everyone here know the outcome of it.

Kind regards

Jon

It's been fascinating reading this thread as I can identify with you all. I have only had 9 rounds of BCG and I have had to be taken off due to the intense pain. My first 6 treatments went okay with mild pain that went after a week or so. But after my next 3 treatments, I have been suffering badly. Since then I have had 2 cystoscopies, one to take some biopsies from all over the bladder and the last one a week ago, to see how the bladder looked. The good news is that I'm cancer-free but the pain has been getting progressively worse. My Urologist has put this down to the BCG and how my bladder has reacted to the treatment. Hence the decision to stop the treatment. The pain is so bad at times that it cripples me. I then have to hobble to the loo as I know that this is the only way to release the pain, which in it'self is extremely painful. As the pain has been going on for several months and showing no signs of easing up, and unfortunately pain killers do nothing for the pain, they have decided to try a 6 week course of Cystistat. This apparently lines the inside of the bladder and helps soothe the pain much like Sudocrem would do to a bad rash on a baby's bum. I'm hoping this will do the trick. If not they will be referring me to a pain specialist. All the best to everyone with the on-going treatments.

Hi Capey

Your not alone mate I know how you feel, I was like that a few weeks ago. The good news is I'm getting better every day now and its a slow proccess and its been nearly three months since my last instilation of BCG. I'm now feeling 80% better if that helps reassure you. On my last Cystosocopy before Christmas my bladder was red and very inflamed and like you it bloody hurt like hell at both ends. I felt like I wanted to pee all the time, it was a constant urge and when I went to the loo, I could only pee a tea spoonfull. I also had that constant urge to want poo as well, in fact I felt constipated and very uncomfortable, making sitting down and driving a very unpleasant experience. 

My consultant tells me its BCG Cystitis and it will go away in time, which as time goes by is quite correct. My Cancer Nurse also told me that BCG can destoy the bladder in some people and insisted that I told her my pain levels every week I went for an instilliation, and if it got to bad, she wouldn't administer it.  

My Consultants is brilliant and just before Christmas, said he was going to take me off BCG, as it was causing me so much pain and he would have a conferance with his collegues, to see which alternative drugs they could administer instead. This they have done and I'm back on again in May, hopefully with this new Immunothearapy Drug it will be a lot less painful. I get the occasional flare up, particularly when I drink coffee and not enough water or drink to much wine.

Well you can't suffer all that pain and discomfort without having at least something to look forward to and  enjoy now and then!!!  As I said to Iain, my Consultant told me to drink at least three litres of water a day to flush your bladder through and if it gets to painful try using Womans Cyctitis Releif from your local supermarket to neutralise the acidity of your urine to reduce the pain. As I said in my previous posts, it does say on the packet "Not to be used by Men" not sure why, but I can tell you it helped me with the pain control, when going for a pee and I only used it a few times when it got unbearable. I'll let you decide whether you use it or not. Keep in touch and I hope this helps a bit with were you are at the moment. 

We are alive and kicking, sod the pain it will go away in time.

Jon

I guess all/most of us who have had BCG treatment are now classed as vulnerable people with regard to Covid -19. I certainly am after 2 years of treatment (15 sessions). I am now in the wait and see stage having ceased infusions but with another cystoscopy in 2-3 months time; all being "well".

There is news that those who have had TB vacinations in their youth are "just maybe" less likely to get serious virous  infection now; so I wonder, if this may be true, where this leaves us who have been having BCG infusions. Are we likely to be more or less susceptible or will it depend on where we are in the treatment cycle.

Hi Dickie

Apologies for the late responce, but your post went into my junk box. Strangeley enough I was expecting a letter from my GP telling me I was an "at risk" or "vunerable person", I didnt get one. I'm still awaiting my next round of infusions due now, but I think I will have been put on the back burner due to Covid 19, I have to wait and see. 

Having read the articles about TB and BCG injections being used to fight against Covid 19 I suspect that we are in a really good place, Ive had twelve of them now, so hopefully my immune system is up and fighting.

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 Wain

Thanks for your post, and I'm so glad that your last Bladder Biopsy in November are showing clear, at 74 that's great news. Reading in the news today I see that three British Hopitals are now using Hydroxychloroquine (HCQ) as of today to ward off Covid 19. I used to take Chloroquine (Trade name Nivaquine) when I was in the Military as an Anti Malaria tablet while serving in Belize and Brunei, luckily it didnt have any side effects for me and if I go down with the virus I'll make dam sure I take it again.

I'm hoping that the trials that have been going on with regards to BCG and Covid 19 will bear fruit and if so, we all here who have had the BCG treatment, will have a massive head start. Time will tell, in the meantime I for one, am not taking any chances and have been on lockdown at home for over four weeks now. I read with distress everyday about the young and old being killed in their hundreds by this awful virus and I really dont want to be another statistic.

When I go out to the Supermarket about once a week, if I have to, I always wear a FFP2 face mask and use dissposable gloves, which as an Engineer, I luckily had a couple of these masks in my home workshop. Along with regularly washing my hands, keeping social distance of 2 meters and not touching my face, hard work that last one, anyway, so far so good. I don't go along with the Governments advice about not wearing a mask, its a highly contagous airbourne virus, that can stay in the air for up to ten minutes in tiny droplet form, so a mask of any kind will at least help, if only partially to stop it entering your body via the mouth and nose. Looking around the world from China to Europe everyone else is using them on advice from thier Governments and thats good enough for me, as we are all highly vunerable.

And having survived Cancer so far I intend to survive this Pandemic as best I can with luck.

Stay safe and good luck

Jon

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 .

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.

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.