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

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 .

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.

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.

Hello everyone, I am so pleased to find this site and identify with people's problems with the BCG treatment. It's clear we all have one thing in common coping with the pain. I myself was diagnosed in June 2020 and have up until now 14 rounds of BCG. The first 6 were fine and so were the following 3, last December. My hassle started after the further 3 in March this year. I suffered 4 months of uncomfortableness and pain on and off, then almost overnight it disappeared. I had August and upto mid September almost back to normality, that was until my next treatment. The nurses decided just to give me just 2 half doses. After around 3 weeks the pain began. It comes in pulses and every morning is the same, I have to got through a pain barrier before easing off, usually mid-morning after glasses of water. I am due another cystoscopy next week.

I find it quite debilitating, hard to make any plans simply because you really don't know how you going to feel. Anyway, thank you for listening, Chris.

Hi ChrisSC, Sorry to hear how you are suffering. I can identify with the pain. My situation was very similar to yours in the number of rounds of BCG before the pain really set in. They stopped my treatment around 2 yrs ago. The Urologist I was seeing was happy to stop after my cystoscopy showed all clear but I know they like one to continue the full course if possible. Unfortunately this is more common than we are led to believe. Without putting a damper on the situation, I still (almost 3 years later) suffer with cystitus type pain of varying degress every day. Some days worse than others. I am a unique case and this won't necessarily be the situation for you or anyone else. I changed my diet drastically and watch what I eat and drink. I have always been healthy, fit and not overweight but I have found that eating better - mostly plant based with meat once a week, cutting out processed food, no caffine (mostly herbal teas and loads of water), exercise, destressing, and rest, and taking vitamin suppliments, I have improved my general health. So far I have had the all clear with my next Cystoscopy in early Feb 2022! 

I also identify with the inability to make plans and how it affects ones mental heath, but I have found it so important to stay possitive and live in a thankful frame of mind and not let my situation get the better of me. But saying all this, I know it's not easy but stay strong and hope your cystoscopy shows a positive result. God bless, Capey.

Hello Capey, thank you for your reply. In a way it's comforting to know that you are not alone in this situation. I feel as though unless you make the effort it is far too easy to give in to it all and sit in a chair with copious glasses of water watching the TV. I too have bad days and better days you just don't know which ones are which. For example we met friends for a coffee this morning and I found sitting more uncomfortable than standing and walking which isn't always the case. I feel for my wife because it also inhibits her lifestyle I don't want to be forever the grump.

Yes so far all my cystoscopy's have been clear which is always a relief. Assuming my next one is they will review my forward treatment which is due back end of March.  At least on this forum you can identify with people going through the same difficulties, people around you don't always appreciate the enthusiasm of seeking out the nearest loo.

Thanks again, do keep in touch.

Hello guys, good to see we are still battling on.

Well it's  been while since I posted,  i am now 4 and a half years post my op to remove an aggressive tumour  which had fortunately not spread beyond the bladder. 

I was horrified to learn that I had bladder cancer, as my mother had exactly the same diagnosis 21 years earlier, my mother sadly succumbed after 4 years of treatment.

Now I had the same specialist, I reminded him of my mother, adding that the treatment must have changed and was better than 21 years ago!! He told me that the treatment  was exactly  the same, however they were now much better organised.  I was surprised  by that, but I also saw a man that despite being totally dedicated to his skill base  who was getting  tired. He has since retired and my best wishes go with him.

Post the removal of the tumour I had one dose of chemo, and shortly after I was started on the BCG treatments, I managed 17 I think and , discussions with my team led to that being the last treatment  , for those of you who have not read my past posts  , I would just say that it was a very painful and stressful time.

So other than that  , I would say that that I had many side effects, the spasms got do bad that I ended up with diverticulum of, both the bladder , and the bowel , in retrospect I endured the BCG  for too long , my team suggested that 12 treatments is about the norm.

Apart from that I had to have a TURP and a bladder neck easement  surgery,  so these things are possible in your journey,  so talk to your team , don't  try to be a hero, when you already are a hero.

I am due another cytoscopy next May.

My best wishes go out to you guys , you have this darned virus interfering with your treatment  schedules, but stay on top of it ,at the end of the day, the person with your best interests at heart is you, I have been missed for treatments that should have been scheduled  , but were not , your best ally is your BCG nurse/ team.

All the best James