Hello Everyone,
Testing times we are in. I apologise if this a very long post but I need to record my experiences.
Until September 2019 I have never been unwell. We returned from a trip to Arnhem on 23rd September. On 24th I returned to work and during the day noticed I had to go to the toilet quite frequently. By the evening it was every hour and during the night I must have got up five or six times.
By the Thursday night I had become incontinent over night and on Friday I made an emergency appointment with my GP. A urine test showed no problem but he put me on antibiotics for a week. The following Friday I was no different and returned to the GP. He sent me for a full range blood test. The surgery telephoned me on the next Friday and said I had an abnormal blood test for Potassium and Createnine (PSE was ok) and would need another straight away. Another week and back to the GP he said I should not drink alcohol, fizzy drinks eat bananas etc for another two weeks and go for another blood test.
On November 3rd my Kidneys started to ache quite badly and by the 5th I was in a great deal of discomfort. We went to A&E where the doctor did an DRE and found my prostate to be small and smooth. More blood and urine tests plus a CT scan. The scan showed a dilated ureta and the doctor said I may have passed a stone but there was no evidence of it in my bladder,however he felt there was something wrong in my bladder or kidney and would refer me to Urology urgently. We waited a week and the phoned Urology and they said they had no record of a referral. We rang A&E and the doctor had omitted to do it. We had an appointment the following week where the doctor also carried out a DRE and confirmed my prostate was small and smooth. He put me on a course of Tamsulosin and my wife said but you found his prostate was ok and he insisted it was a man thing and the medication would sort it. He said he wanted an ultrasound of my kidneys plus urine flow test. The ultrasound was quite quick and flow test was a waste of time as I barley did an egg cup full between visits as it was always fairly urgent I needed to go.
We went back to the doctor and my wife again pointed out there was something seriously wrong as I was wearing Tena men night time pants as I was leaking constantly when I dropped off to sleep. I rather doubt I slept more than half an hour at a time. He gave me additional medication for an overactive bladder. He then said he wanted a CT of my lungs, kidneys and bladder with contrast as he had notice a dark node on my lung from the first CT in November. Another appointment and he said he wanted to carry out a Cytoscopy. This arranged for January 30th some four months after I first visited my GP.
I had the procedure and as I was in recovery the doctor came and muttered something to me. I was spaced out and had no idea what he said. I went back to the day ward complete with saline feed to a catheter that was draining into a bedside bag. In the evening a Junior doctor came to man in the bed opposite and my wife collared her and asked what they had found. She went and got my file and said she could not read the doctors hand writing but he had done a crude drawing which indicated a mass in a my bladder and he had taken a biopsy. The following morning another doctor came and said they had found a mass and a sample had been taken for histology. I was discharged the following day once the urine in the catheter was a mild cherryade colour. The catheter was removed.
My discharge paperwork said they had fitted a stent to my left ureta which was the first I knew of it.
Another ten days another appointment. Different doctor scanning my notes and said the result of the biospy is that I have Muscle Invasive Bladder Cancer. My wife hit the roof and said but you have been treating him all this time for prostate problems and there is nothing wrong it. He apologised and just said that 90% of the time that was the case. He then handed us over to an Oncologist Nurse who gave us a Macmillan booklet and said we would be referred to Addenbrookes after I had an MRI scan with contrast. I had the MRI the following week without contrast as my Createnine was still far too high.
The following Monday Addenbrookes phoned me and made an appointment for the Tuesday morning. Appointment came and they ran through everything. Offered me a catheter as I was still incontinent at night and not sleeping. Made an appointment for a further Cytoscopy on Wednesday the next week. Blood, Urine, MRSA and Lung Function tests as well as ECG plus setting up a mychart online account for my records all in the morning. In the evening they rang me concerned about my blood test results. On Thursday morning they had me back in to carry out a Nephrostomy on my right kidney. The Radiology intervention consultant said my kidney was not draining at all and I was posoining my self.
So I have bag on the outside and inside of my right leg. I feel fine and sleep all night hooking myself up to night bags. I get anything up to 1500ml out of the right kidney overnight and only 150ml out of the catheter so my left is working but not very well. This could be the stent or tumour I don't know.
I will post the next instalment shortly with my experience and follow up from Addenbrookes.
Hi and welcome to the group. It sounds as though you have had a tough time of things so far. Unfortunately we know that bladder cancer is often late to be diagnosed. Some of us have had more proactive GPs than others. Although round about the 5th most common cancers, few people know of it. Good to know you are in the system and having treatment. It sounds as though you have had 2 TURBTS (rigid cystectomies) . The results of all your recent treatments will determine the next move. I hope all goes well. Lots of experiences here if you need to ask any questions. Best wishes.
You should have been given a CNS dedicatedated nurse. She will be able to find answers to your questions and will have access to your records. Mine has been extremely helpful 
Denby
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