I have recently had TURBT operation to remove a large necrotic bladder tumour, they only managed to remove 80% of the tumour. It is muscle invasive and has spread to 2 lymph nodes near the badder and possibly my lungs. I had to come home with a catheter which can get very uncomfortable . I am trying to be positive and will try and face whatever treatment they offer but sometimes I feel so overwhelmed. I’m lucky that my husband is very supportive. However, my one daughter doesn’t know what to say to me, my eldest daughter gets upset and starts crying and my son has Asperger’s but if I mention that I am tired, he tells me that I must be dying. They are all adults over 40 and neither daughter has visited me since my diagnosis..
How has everyone coped with the waiting to hear about what treatment is going to be offered?
Hi Ellie May and a welcome from me. As jane says, the waiting and uncertainty can be the worst time. Once a treatment plan is in place then things become slightly easier as you have something positive to focus on. People do tend to stay away in the early days mainly because they do not what to say. Your family will come round when they get used to the situation. Don't be surprised if you are called for a second follow up TURBT. Quite common and not usually as severe as the first. I was muscle invasive but ok so far. Lots of experience here so feel free to ask any questions or just talk. Best wishes.
