Any CCrs ever had BCG (for bladder cancer) ??

[Dave7]

Not going to get morbid or get too graphic...........I promise.
I am now half way through my 3 years of treatment which is..........every 6 months I have one per week for 3 consecutive weeks.
Basically they insert a catheter (loverly) and fill the bladder with live TB virus. The body (for some strange reason) thinks aye aye..........I'm not happy with that and tries to expel it while at the same time the TB virus is trying to kill you This forces the bladder to strip a lining off which you pee out during the next few days.........once every 5/15 minutes of agony for the first 12 hours.
Now the moan
The reaction can be severe and apparently over 50% of people fail to complete the course. Up to now I have managed it with a variety of pain killers and have been up an around after a few day. BUT.............
This weeks (Friday just gone) has been absolutely horrendous (I was warned it gets progressively worse)..............I will enlarge only if anyone asks. The upshot is I am after some stronger pain killers........something that can wipe out 24/36 hours while allowing me to function.
I am 69 and never taken an illegal drug in my life.........but I am researching it now.
Rant over.
Happy thought to all CCrs

 

[Andrew_P]

No help, sorry but hope you find something. Continuous unrelenting pain of any sort is awful.

If you are looking for prescription drugs without a prescription I would be very cautious.

 

[midlife]

Hope it all goes well It's a very well recognised treatment. I'd have a word with your Urology consultant or associated McMillan Nurse about what painkillers you can be prescribed rather than trying everything at random over the counter from boots.

Shaun

 

[Mrs M]

Sounds awful, my sympathies to you.
Your GP should really be able to give you something that gets the pain under control.
Can't give any advice though .
Best wishes x.

 

[dan_bo]

That sounds awful. Cock TB. Bloody hell you can't take your health for granted.


Try Tramadol. Or pot belge.

 

[SpokeyDokey]

Really sorry to hear of you suffering like that - maybe you should post in the health section. There's a lot of knowledgeable folk who post in there.

 

[Levo-Lon]

It will get moved to Health..

id talk to the specialist..
i found strong pain killers made my pain worse when i was in agony with ulcerative colitis..
tho i think that was tramadol..i dont like that

 

[fossyant]

Oramorph or the slow release Morphine tablets. You may need a fair dose, but you will be floating.

PS your GP or Hospital should be able to prescribe.

 

[fossyant]

I've moved it with a re-direct for a day.

 

[steve50]

Hope it all goes well It's a very well recognised treatment. I'd have a word with your Urology consultant or associated McMillan Nurse about what painkillers you can be prescribed rather than trying everything at random over the counter from boots.

Shaun

I would agree with Shaun on this one, illegal drugs are dangerous even if they are a prescription drug, i have very recently had dealings with McMillan Nurses after my old mum fractured her femur. Although McMillan nurses are widely regarded as palliative care nurses for people suffering cancer etc they are more than willing to help anyone who is suffering extreme pain and they can, as in my mums case, arrange to have some pretty powerful drugs prescribed.

 

[jefmcg]

This way outside my experience, but do take a look at non-drug approaches. Pain is quite literally "all in the mind" so you may find that you can find mental tricks to alleviate it.

I heard about the use of fully immersive virtual reality to distract burn victims while they undergo daily abrading . That's one of the most painful things I can imagine**, yet apparently it can prove helpful. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2634811/ It's not suitable for your experience, as it the approach described is for a brief painful procedure, not for someone in constant pain, but it's an example of an unexpected way that pain can be relieved.

**that's not comparing it to your pain - that's so far outside my experience, I can't imagine it at all.

 

[fossyant]

This way outside my experience, but do take a look at non-drug approaches. Pain is quite literally "all in the mind" so you may find that you can find mental tricks to alleviate it.

Pardon... ? 120mg of Morphine, 4000mg Paracetemol, 800 mg Ibuprofen and max dose of Diazapan (per day) just about saw me through the first 3 weeks of a fractured spine and 4 broken ribs. I'd like to see a better man than me manage on 'will power'.

 

[Dave7]

Hope it all goes well It's a very well recognised treatment. I'd have a word with your Urology consultant or associated McMillan Nurse about what painkillers you can be prescribed rather than trying everything at random over the counter from boots.

Shaun

Have spoken to my nurse (who is very good & who's name is Nurse Cox ) she can only recommend trying various to find what suits me best. I smugly thought I had it more or less under control until this treatment.

 

[Dave7]

That sounds awful. Cock TB. Bloody hell you can't take your health for granted.


Try Tramadol. Or pot belge.

Its actually the bladder ......but has to get in there somehow and that way is

 

[Dave7]

Really sorry to hear of you suffering like that - maybe you should post in the health section. There's a lot of knowledgeable folk who post in there.

Thanks............duh.....why didn't I think of that. Done now