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. That's how the current saga started. 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. Thank you. This evening's rosé seems to have stopped whilst writing this as well! Merry Christmas everyone and good luck! Note: 24/07/24 edited to shorten. Treatment in 2017-18 included radiotherapy and two TURBTs. Urology signed me off in early 2019. Palliative care. Living quite a normal, independent life, albeit with a urethral catheter. I've transferred much of the original main text to my profile - which was blank until I discovered it a few minutes ago! More details there.
Battering winds in north Derbyshire too. Waiting for them to drop so I can re-erect a banner out front about a local planning issue, as there have been more developments in the process, so people will need to write in all over again... sigh.
The antibiotics (Nitrofurantoin 2 x 100mg per day for 7 days) seem to have helped suppress the rosé. My last catheter blocked irrevocably on 1st May after 5 weeks and 3 days i.e. about average for this phase which has been going on for nearly 2 years. Replacement was very slick. Removal was only briefly painful and my prostate did not fight the new one at all. Quite remarkable!
Well, the 1st May catheter did not last long before blocking! I attempted to unblock it using a sterile water irrigation syringe and pre-boiled water but it gave solid resistance. I drove into A&E and, because it was 7-40pm I missed Same Day Emergency Care which closes at 9pm and they'd stopped accepting patients. A&E were doing their best but I had to wait nearly 3 hours, with an embarrassing bypassing wet patch developing despite wearing absorbent precautions. Eventually my catheter was replaced. My usual latex type was not available. An attempt to fit an all silicon catheter of my size was obstructed by my prostate and thus went in the bin. Success was achieved with a smaller size, again in silicon. My lower back ached last night, was suppressed by a paracetamol but has come back this morning. BP and temperature completely normal. Here's hoping the aches ease and the smaller bore catheter gives me at least 3 weeks of service. The previous one only lasted 1 week and 6 days, an unwelcome new record for me!
Thanks. The back pain had eased by the next day, thank goodness! I had a rosé event two days after the new catheter was fitted and another one 'today' at 15 past midnight (so technically on 23rd May). I mentioned a while back that I keep a diary...yes, sad, I know; I've had 45 rosé events in total since January 2021 and 15 of them have been this year. It is only May. There were quite a few in 2019/20 as well but I have yet to analyse those years. I suppose it's best to enjoy the relatively good days, of which there have been many. I'm aware of course that some of you are stoically ploughing through more significant difficulties. My best wishes to all.
My smaller than usual size all silicon catheter which was fitted on 14th May is still providing adequate flow after 3 weeks and 4 days. I was initially concerned that a size 14Ch might block more readily than my normal 16Ch. Perhaps my daily dose of 2x 500ml of diet Pepsi is working. When I cut it back to just one per day (to preserve my teeth!), the previous two catheters did seem to block more often. I sometimes wonder whether a direct bladder flush with diet Pepsi would work, obviously letting it gas off beforehand. After all, bladders do seem to tolerate other quite aggressive fluids such as BCG. Before anyone gets too excited, I'm joking. Just don't suggest it to a certain US ex-president.
The small catheter lasted until my routine change appointment today, still flowing, albeit a bit sluggish at times. It had survived 6 weeks and 3 days. The replacement catheter went in after 5 minutes of determined effort to get it past my prostate and felt completely normal for a couple of hours, then became extremely uncomfortable/painful, feeling as though it would by-pass. This was somewhat odd because it was in fact flowing normally. No bleeding either. At 8pm it became unbearable. I was getting concerned as I'd not experienced these symptoms with any previous catheters. A drive into A&E was just in time to catch Same Day Emergency Care who tried flushing the new catheter. It did not show any signs of being blocked or kinked. Further consultations amongst the medical staff resulted in them deflating the retention balloon, pushing the catheter further in, re-inflating the balloon then gently pulling the catheter to seat it at my bladder outlet. These activities, particularly with the balloon, seem to have been successful. I'm back home, now just with normal new catheter sensitivities which should subside in 2-3 days. Feeling relieved!
Excuse my ignorance, is using the catheter a permanent requirement for patients? Thx
Not necessarily. It very much depends on one's case history. In my case it was not the preferred option but became favourite because my scarred bladder from radiotherapy plus two TURBTs proved to dislike normal expansion and contraction and tended to bleed heavily. A catheter drains the bladder constantly, thus avoiding the problem. The disadvantages of long term catheter use include an increased risk of infection, bladder shrinkage, loss of bladder control and the general inconvenience of the external tubes and bags. However, like many things in life, one gets used to managing these factors remarkably quickly.
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