When Tony started noticing blood in urine, like many men, he put it down to something that would go away by itself. After a while he realised that this was something that was not just simply going to go away and so made an appointment to see his GP for the first time in thirty years.
Tony’s GP referred him to have a cystoscopy at his local hospital which confirmed a large tumour within his bladder. The tumour was removed, and following CT scans, Tony was seen again in clinic where it was confirmed that bladder cancer was present and that it had penetrated the bladder wall. “I remember coming away from outpatient appointment thinking the worst. I was referred to an oncologist who started me on chemotherapy more or less straight away”.
Before chemotherapy started an appointment was made for Tony to see a urologist who explained the need for surgery to completely remove his bladder (total cystectomy) and to create a new bladder from his bowel (a neo-bladder procedure). “It was a nightmare, but I remember thinking that I must get my head around it”.
During chemotherapy Tony explored other options and met with a consultant oncologist who quickly informed him that he was not a candidate for radiotherapy and agreed with the urologist’s recommendation for surgery. This was based on Tony having developed bladder cancer at a relatively young age and how aggressive the cancer was, having spread from the bladder into the surrounding tissue.
Tony required sometime after chemotherapy treatment to regain his strength before surgery. An appointment to see Professor John Kelly and his team at UCLH was made.
“The team were brilliant – my surgeon explained everything to me. He was very direct and honest”.
Tony met the urinary diversion clinical nurse specialists (CNS), Sue, Jo and Sharon. “Sue was wonderful - she explained the procedure and what to expect post-surgery. She informed me that she would like me to show her that I could self-catheterise. I really dreaded doing this, but now realise just how important that meeting was”.
Tony’s surgery was a success and his bladder was removed robotically, using the latest da Vinci robotic system. As a precautionary measure, Professor Kelly also decided to remove Tony’s prostate gland. “You go off to sleep and then wake up as if nothing has happened, even though you have actually been in theatre for hours. I remember feeling incredibly tired on the ward. I had catheters coming out of me from all directions, but the physiotherapists soon got me walking. Walking to the toilet and back for the first time is like running the London Marathon, but don’t be alarmed - you will get stronger. All of the ward staff were very good, but the standout care I received was from Professor Kelly’s team”. During Tony’s operation his sister waited at the Macmillan Support and Information Service in the University College Hospital Macmillan Cancer Centre, “what a great place this is – my sister was welcomed and supported there while I was in theatre”.
Tony is now 18 months on from his operation and is well on the road to recovery. “Life now is wonderful in that I am alive and able to do most of the things I did before. I consider myself to be extremely lucky - at this moment the cancer has gone”. Tony recalls that it took some time to adjust to life with a neo-bladder, “It takes a while to establish a new routine with emptying and training your new bladder, and living with a new bladder, but with each day it gets easier. The follow up support especially from the fantastic urinary diversion team is second to none. You will certainly get to know your urinary diversion CNS very well!”
Tony now reflects on the different stages of his treatment journey and the decisions he was faced with. “My mind set prior to surgery was that I was able to have a new bladder and although I have experienced highs and lows throughout my journey which I think is natural, I plan to be around for a long time. For patients going through bladder cancer, trust me that when everything settles down you will lead a normal life again and if anything you will probably appreciate life a bit more than you did before. You are in extremely good hands at UCLH”.