Antibiotics

Hi I had my bcg 3 weeks ago 3 treatments

First one was OK but the second oh me oh my put me in bed could not stop peeing burned like hell and discoloured urine looked like iron brew ouch

Third one simalar now three weeks on things settling down. I should gave had this treatment in March but cora. Stopped it so I was like starting again

Chin up the treatment does work well and you can break a week what if you had a holiday my nurse said there would be no problem. So don't worry about it

This was my 10 11 12 bcg treatment

Bob

Yeah this is 10,11 and 12 for me and mine was stopped in February so I know what you mean about it feeling like starting again. I just got myself in a state over the antibiotics and the dr saying no problem but the nurse saying it is a problem, there’s no consistency at all. 
Thanks for your reply xx 

Hi Deli. Communication between different departments was not great even in normal times, but nowadays when it is difficult to see anyone face to face makes it even more frustrating. I did not have BCG, but I believe they will not go ahead with it while you have an infection. Not treated, infections can get worse, so the antibiotics would help, even though it has delayed BCG. Not knowing where you go now and who to talk to must be annoying. Don't think you are being a nuisance by chasing things up. Your welfare must come first. Do you have any discharge notes with the name of the consultant you are under? If so give the consultant's secretary a ring and try and arrange an appointment. I have always been copied in on the notes after any treatment or consultations. I hope you get some answers. Best wishes.

I honestly know that I needed antibiotics, I was so poorly yesterday and I do understand that having bcg whilst having infection would be terrible. I think I was just feeling so alone, I never know what to do for the best or who to ring. I always feel like a total pest. 
I’ve spoken here before about how rubbish the nurses make me feel, I actually get quite jealous when I read about the great relationships people have with their care teams, I don’t feel like that at all. 
 This has never happened to me before, I always thought I was quite a confident and able sort of person. 
Now I’m an absolute wreck all the time. 

I’m sorry to hear you are not feeling well.I hope the antibiotics work and you feel better soon.You are not a pest and it’s bad that you have been made to feel that way.I’ve had a similar experience with the receptionists at our health centre and it’s not nice.My specialist nurse has never been in contact either so I know what you mean about feeling jealous.Take care,love Jane xx

Thank you Jane, I know everything seems 100 times worse coz I don’t feel well, just could do with someone magically making it all better really xx 

Hi,I know,I could do with a magic health wand here too.Fingers crossed your antibiotics will work.Love Jane xx

Hi Deli1577, there is nothing like an infection for making you feel low in spirits. Hopefully the anti-b's will kick in soon. I don't think the gap in the BCG will matter in the scheme of things. I once had two months off to get spinal surgery, then resumed protocol. I received dose 19 on Wednesday. So far apart from getting up two hourly at night I'm ok, but side effects are unpredictable I find. I'm treating myself to Mrs America on BBC2 and fresh picked blackcurrant muffins just in case I start feeling worse Sending love to you. xxx

Deli1577, there's nothing wrong with you wanting decent, well informed, consistent treatment. You've paid for it in years of NI after all, it's not actually free. Maybe consider a call to the PALS [patient advocacy and liaison] of your hospital. Even without going as far as a formal complaint they may be able to feed back the need for improvement so those that come after you don't get as bad an experience.

Don't forget my much advertised Robinson's Lemon Barley Water [not plain lemon squash] to help flush the germs out. It's quite comforting to drink warm as well as cold.

Hope you feel better and more positive soon, just remember you are not at fault.

Denby