Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

Recovery from cystectomy

winkers60
Posted by

Hi,I thought I had better start a new thread as I wanted to thank JennyJJ,Inanna,Herothedog & Denby for their kind support and thoughts regarding my slow recovery.

Herothedog-I am being incredibly lazy for me and watching tv, reading,and doing medical genealogy on the computer.I am managing at home on my own.My sister usually pops in after work and gets shopping and last night she put out the garden rubbish bin and recycling for me.Hopefully I will be back to doing these chores myself before too long.My partner John is disabled so he can't help with much but he is a tremendous emotional support.I do feel very let down by Macmillan and the health centre.It is some years since I last saw a gp and I have not seen a doctor at the health centre since I was diagnosed with cancer.Our local health centre has been so unhelpful.The recovery nurses at Southmead hospital where I had the operation suggested that I get a routine blood test.I phoned the health centre to ask and was told I couldn't have one without written paperwork from the hospital.I explained I had just had major surgery and had to make a bit of a fuss.The receptionist reduced me to tears and put me on hold,eventually I was told I could come down later and see a clinician.Luckily I saw one of the paramedics they have working there,he knows me having seen my mother at home a couple of times.He seemed very shocked to learn I had cancer but took my pulse,blood pressure and bloods.The blood test showed I was anaemic and I had to go back and have more bloods taken.I have heard nothing since.I suppose I will have to chase up those results too.The communication between my local hospital at Yeovil,Southmead in Bristol and the health centre has been practically non existent.I can't fault Southmead as a nurse from their recovery team has phoned every week to see how I am progressing.I mentioned I had had no support from Macmillan locally and one of the Bristol Macmillan nurses phoned me.They have been in touch with the Yeovil team but I have heard nothing from them yet.I am recovering it's just such slow process and I am a very bad patient.Thank you for all your support.

Denby-I am anaemic so I will have to start some treatment.I was waiting to hear from the health centre whether I have iron deficiency anaemia or another kind.Thanks for your support.

Love to you all Jane XXX

JennyJJ
Posted by

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

winkers60
Posted by

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

winkers60
Posted by

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

JennyJJ
Posted by

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.

winkers60
Posted by

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

Teasswill
Posted by

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.

winkers60
Posted by

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

foxbrush
Posted by

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.

winkers60
Posted by

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

Wilbert
Posted by

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

winkers60
Posted by

Thank you so much Wilbert.I shall see how it goes with the health centre.To be honest I'm not sure I have the energy to complain at the moment.I'm finding the up and down nature of the recovery after this operation hard to cope with.I felt quite good yesterday but today I have had to rest.I'm determined to get well as I have promised mum I will get her out of the care home as soon as possible.May be by the spring she will be back in her own surroundings with me.Thank you so much for your kind post.Love Jane XX

Wilbert
Posted by

Keep your chin up you are doing so well.Such a good idea to have an aim to get your Mum home 

Sadly I lost my mum when I was 21 51 years 

lots of love

Celia  xx 

winkers60
Posted by

Hi Celia,I'm so sorry that you lost your mum at a young age.My father died when I was 12.Mum and I are close,especially since I started looking after her in 2004 when she suffered a brain haemorrhage.Back in April mum went into hospital and then in May was transferred to a local care home as I couldn't find any alternative care.I had 2 cystoscopies and then the cystectomy so it's been a stressful year.I'm going back to see the consultant on the 19th November to get the histology results.Thanks so much for your support.Love Jane XX

Wilbert
Posted by

Hi Jane

Good luck  with your app on 19th 

I can understand  your closeness your Mum having  lost your father at such a very young age

Fingers crossed you and your mum will be able to celebrate Christmas  together

Much love 

Wilbert 

ps senior moment  last post forgot I'm not Celia here but  Wilbet my much loved and missed moggy c