Recovery from cystectomy

Communication,communication,communication!!!!. It is so poor in the nhs. I really wish something could be done about it and then there would be better care and less complaints. So sorry you have been put in this position and that they have made you cry, so wrong.Bath is my local and the stoma nurse was due on Wednesday to remove clips and stents. We waited all day and no nurse or phone call. We rang again on Thursday and she came and was so apologetic and efficient, a mix up with patients 2 new ones  apprtently, but it didn't really make up for the anxiety of waiting all day with no communication.

Hope you will feel better once they have sorted out the anaemia, thinking of you and sending virtual hugs.xx

Thanks Jenny,I wondered if Bath was your local hospital.I used to see the urologists at the RUH until moving in 1998.Waiting around for medical help is no fun,I have lots of experience of that looking after mum.Our local health centre used to be much better then they moved to a new building and everything has gone downhill since.I had trouble just getting an appointment to have my staples removed.Did Ray manage to walk down for his paper ? Jane XX

Thanks Jenny,I wondered if Bath was your local hospital.I used to see the urologists at the RUH until moving in 1998.Waiting around for medical help is no fun,I have lots of experience of that looking after mum.Our local health centre used to be much better then they moved to a new building and everything has gone downhill since.I had trouble just getting an appointment to have my staples removed.Did Ray manage to walk down for his paper ? Jane XX

Yes he did and another walk this afternoon. He was so lucky the Bath stoma nurse did a home visit as it stopped us having to drive over to Bath for the stents and go to our surgery for the clips.

That was handy not having to drive to Bath.I had to go to Yeovil to have my stents out but got the staples out at the health centre.I can't drive and since they moved the health centre it takes me about an hour to walk there and back.Luckily last time my partner John gave me a lift.I need to build up my walking again and then I can get down to the home to see my poor old mother.I wish I was well enough to look after her again,I do miss her company.It's very heartening to hear how well Ray is doing.Love Jane XX

So illustrates the postcode lottery in care. Post RC I was having weekly blood tests to pick up any problems (partly because I had neobladder). Do you have any social car scheme/ dial-a-ride scheme that would help with transport? Otherwise in theory, GP can arrange hospital transport.  Hope they get you sorted out soon.

Thanks Teasswill,There is a local transport scheme that takes people to the supermarket etc,not sure whether you have to be pension aged though (I'm 59) .I ought to find out.When mum has been in hospital the health centre ring when she is back home to see how she is.I suppose its because she is elderly.I have had major surgery and can't get to speak to a dr without hassle let alone see one.Your suggestion of keeping a diary is a good one.I have a diary from the stoma team so I will start using that.Love Jane XX

Hi winkers60, good to see you up and about a little. Your Drs actually sound worse than mine who I have to say have been good with me, but poor with my late wife. 

Have you thought about doing your food shopping on line, most supermarkets do it now and I find it a real godsend.

I wonder if your problem is the receptionists or the Drs, worth complaining, they may help you more.

Mine recently sent me a nurse from Health and Wellbeing, who just checked I was managing , but then I got a severe chest infection, possibly part of the visit LOL.

Best wishes.

Hi foxbrush,I hope you have recovered fully from your chest infection.I am seriously thinking about moving to another doctors practice or making a complaint.There are some good receptionists but the majority are extremely rude and unhelpful.I can't comment on the doctors as I have only spoken to a couple of them over the phone.My own gp is about to retire.I have ordered food on line before but the shopping is not really a problem as I usually go with my partner John.He cannot walk far as he has a very rare muscle disease.The supermarkets a few miles away are smaller and easier for him to walk around so we tend to go over the border into Dorset.On line shopping is certainly very useful.I just worry I will get carried away and spend too much money.Best wishes.Jane XX

Just wanted to send love and hugs to you I'm full of admiration at the way you are coping you are amazing 

I wonder if a complaint to the practice manager might help I've had experience of unhelpful receptionists but found the practice manager helpful particularly when I said my step was to contact the.bma and my mp Its easier when you aren't the patient perhaps a friend could help 

Sending love

Wilbert xx