I recently joined this forum for moral support and have found it has helped me and others a lot. While I recognise that our treatments for bladder cancer will vary considerably depending on each case history, my personal experience may give some comfort to fellow sufferers and be less alarming than just studying straight statistics. I had for many years had kidney stones. They became troublesome from around 2010 onwards, giving pain and blood in my pee once or twice a year. Ultrasound confirmed that I had stones, as did the sound of a ping in the WC when one passed. I lived with the problem until the blood in pee became a concern in July 2017, prompting me to see my GP. I tended not to rush into the medical environment very willingly because I had a fairly extreme medical phobia (white coat syndrome). My GP wondered whether my kidney stone symptoms were masking something else e.g. bladder cancer, and tests were organised. Ultrasound, flexible cystoscopy and CT scan(s) were thus on the agenda. I sought help with my building level of terror caused by 'tests,' needles and possible cancer. The NHS quickly found a place for me in Cognitive Behavioural Therapy sessions. These did not immediately cure my phobia but were an immense help in gradually dismantling my fear and gave me hope that I might at least be able to act like a normal patient some of the time and avoid fainting whenever a needle came near me. By this time I was frequently getting my waterworks blocked with blood clots for several hours. The 'tests' were endured a month or so after the visit to my GP. Ultrasound: No big deal. Flexible cystoscopy: I was grateful that nurses held my hands! A small lesion in my bladder was found. CT scans provided further details and a TURBT was scheduled, plus a blood transfusion or two to replace my leakage. The support I received from Macmillan nurses, other NHS medics and my family was superb as I began this daunting phase of my life in my late 60s. Pre-TURBT assessment caused me to be diverted into radiotherapy instead, at least until a non-related health issue was further investigated. Roll forward a few months and my symptoms (bleeding) which had been suppressed by radiotherapy returned with a vengeance. More transfusions followed, then an ambulance ride because my works blocked. Things were beginning to look extremely grim. I felt so ill that I gave up hope. I was placed in a side ward and my son and daughter were told I might only last a few days, maybe a month. A chaplain visited... An emergency TURBT was performed. I very slowly began to respond i.e. the bleeding greatly reduced. I was discharged from hospital after nearly 4 weeks. A few months later the bleeding started again and became excessive, requiring further transfusions and ultimately another TURBT. Recovery this time was better. A sepsis admission in that eventful year completed the drama. Since then, much to my surprise, I'm still here, living more or less normally albeit with a urethral catheter which is tending to block before the 12 weeks normal replacement cycle. Catheter replacement has always been quite painful for me and is often followed by varying degrees of blood in pee which lasts for an hour or so. Yesterday's blockage, catheter replacement and mild rosé earlier this evening is no exception. BUT I'm still here and will I suppose have to begin stamp licking for yet another Christmas. Incidentally, one of my coping mechanisms is to keep a diary of my symptoms of the bladder cancer. When they reappear, the fact that similar symptoms have come and gone over the last 5 years without much drama actually helps me to put them in perspective and reduce the mental stress. Essay over. It has helped me. Thank you. This evening's rosé seems to have stopped whilst writing this as well! Merry Christmas everyone and good luck!
