Advice

Hi Bumblebee49. Unfortunately we have seen many cancellations and delays owing to the backlog of Covid, and so guidelines have been stretched. It really is frustrating as we want things done as soon as possible. In the great scheme of things, a few weeks should not make a great deal of difference. The initial TURBT would have curtailed things. You may like to call the urology waiting list office and let them know you would be available for any cancellations if it is possible for you. Your pre op assessment should still be valid. Best wishes. 

Thanks Rily, it seems like at the beginning it was all done very quickly and with urgency and now I feel like I have been left. I feel fine but it's just a bit concerning. I was thinking of just letting them know at Urology how I feel. 

I'd endorse what rily says. Worth contacting the dept to express your anxiety (but don't quote NICE - guidance is one thing, feasibility is another) & willingness to take up a cancellation. You may well find that things slow down a bit now, with gaps between tests, results, appts to discuss options etc. 

When I was going through this many years ago, TaG3, with initial TURBT end of April, second look etc, opted for bladder removal which eventually happened beginning of September. I felt like a ticking time bomb, waiting for a recurrence, but still all clear after that 4 months wait.

Yes I did contact the surgeons secretary and she said sometimes they say 3-4 weeks but the bookings system cannot always accommodate that. I can wait the two weeks but its seems like it was very serious and now nothing.  I am a patience person so I think I will try not worry too much. 

Also it's only because I work for the NHS and I was talking to a colleague who has breast cancer she was telling me about the Nice guidelines and what one should expect to receive that I looked at them. I have worked for 22 in NHS so realise that things get moved and cancelled for various reasons and the patients needs are not always at the forefront. When it comes to your own health issues you think about the outcome more I think. It seems its all a gamble but I know sometimes the people who shout and make a fuss get action. I am not that sort of person. I just want to get through this.