Urology phone appointment

Hi Jane

Not the sort of attitude you need when you are the one waiting anxiously for results and reassurance. Moving to yearly scans does sound positive for you though. 

How are you feeling? 

Di x 

Thanks Di,There is no sign of cancer which is great.The most recent scan showed swelling in both kidneys and urologist thinks they are working at about 70 per cent.I would much rather have spoken to my urologist as he has known me for over 20 years and we get on well.Follow up seems to have been passed onto to this new man.I get the impression he thinks I am making a fuss but I feel so tired all the time.The surgeon was keen to point out that renal problems were the main cause of concern following cystectomy.You have to have regular blood tests to check renal function after cystectomy.I have been under an enormous amount of stress since mum died so some tiredness will be due to that.I told the uro I get a lot more back pain but he says that is probably my arthritis rather than kidneys.Love Jane xx

I hate all the "probablys" - I know they're not miracle workers and they don't have a crystal ball but you want to KNOW! X

So do I.I can cope well provided I know what is happening.x

Some Dr’s are very understanding and approachable but some are far from that and with those I think we really don’t stand a chance. Hope you get some answers and things go well. Jean.

Thanks Jean,I agree.On the whole I have had good urologists over the last 40 years.Urology at the local hospital was always good but the general standard has slipped throughout the hospital in recent years.How are things with you ? Love Jane xx

Not too bad thanks Jane, husband has had his 3 maintenance BCG’s so hospital free for a few weeks then a flexible cystoscopy, interestingly the Dr that did his first cystoscopy at the very start of our journey was one of the latter type Dr’s, I was able to go in with husband and the only thing the Dr said was there’s a problem, no explanation, no advise on what would happen etc, the only information we got was I asked the nurse and she said what would happen next, although nobody told us it was a TURBT and what that entailed.

The good thing about these forums are that the ones who go through it can help answer questions when people have no idea what to expect. Jean.

A few hospital free weeks must be a change.The first cystoscopy I had in my early 20’s was the worst,no information at all about what would happen.The day theatre was so busy that they put a few of us into a waiting room as they needed the beds.One poor old man was vomiting from the anaesthetic and I was still half asleep.I managed to call for some help for him and fell back asleep until mum turned up to help me home via taxi.It was a horrible experience but thankfully was a one off.That was nearly 40 years ago.Love Jane xx

Sorry to hear that Jane, so dismissive. Can you ask for second opinion? Over the phone as well not even face to face it's not good is it. Not very good follow up. Xx

I agree I have learnt all I know from here, only seen 3 doctors since last June and two were not that helpful. The first one was lovely he tried to explain it well.