Hi - I'm joining having been diagnosed with bladder cancer last October. I've had 2 procedures under general anaesthetic to remove cancer - not yet in bladder walls - and a 6 week course of BCG. I was told there'd another procedure 6 weeks after last BCG & then further BCG treatment if all well. I've now waited over 3 months for an operation date, went for second pre-op assessment (they only last 3 months) and am told I have a bladder infection, with no symptoms apart from mild 'period pains'. The nurse who called said I might need to take antibiotics before next operation, but they don't have me scheduled yet. I've had a different consultant every time and only phone calls, nothing face to face so don't have anyone to ask whether it's dangerous to wait this long. I'm starting to get depressed and anxious. Any re-assurance out there from similar experiences? Thanks
Hi clarice and welcome to this friendly and supportive group although sorry you had to find yourself here. It is always frustrating waiting for appointments and when you are not getting enough information. We know there are many backlogs and some extra few weeks should not make a great deal of difference in the great scheme of things, but it is always an idea to give urology waiting list dept. a ring to see if you are on the list. Best wishes.
Hi clarice . Unfortunately, things have changed since Covid. Prior to Covid, cancer patients were allocated their own CNS (cancer Nurse Specialist) with a dedicated phone number. We could always call our CNS for information and advice and we got to know them well. During the pandemic, most of these nurses were allocated to different duties and many have not come back. As you say, it is now difficult to keep fully informed. I hope all goes well for you. Best wishes.
