Hi Tracey -I do hope you have had some answers and also treatment and you at least know which path you are on. I think the worst part of waiting is the "in limbo" effect and not being able to make any plans for your immediate future. I am a Kiwi in Sweden and was diagnosed with bladder cancer T1G3 on my granddaughters 5th birthday - 12 September 2019 (will never forget that date!!). I have had 3 TURBT where they have found tumours (7in total, I think) that have regrown each time. Was booked to have a radical cystectomy on 19th March but 3 hours before I was due to be admitted, I received a phone call to say all operations have been postponed for the forseeable future due to Covid19, lack of ICU places, too many staff being off sick, lack of medical supplies and also the fear of much needed staff possibly being infected by travelling here. I should have had my operation around the end of January but due to Stockholm hospital's total lack of communication with my hospital nothing happened. They then decided they wanted new CT scans (I had had my last one in January) and an MRI. Again they didn't communicate with my local surgeon, their "democratic decision" after a conference call between their own staff and things were further delayed which has now put me in my current situation. The robot equipment and surgeons to operate the equipment were supposed to come from a University Hospital in Stockholm but it is one of the worst hit areas of Sweden with Covid19. Instead they instructed that I should begin BCG immunotherapy as soon as possible as an interim measure. Had my first BCG on Monday 23rd and have 5 to go, but still have no idea when I can have my surgery. The unfortunate thing with BCG is it only is effective on cancer within the bladder and I have a tumour in the urethra as well, which it won't touch. I really do understand what you meant about the waiting torture. I swear at my cancer every day, usually when I am out on my daily walk! Would love any feedback from anybody re any side-effects to look out for with BCG and any positive suggestions for helping me stay positive after this 7 month wait. Stay as healthy as you can with this wretched virus that has turned the world on its head!
