Hello All

Hi Tommymac,I’m really sorry to hear about all you have been and are going through.I could fill a book with all the stories about how unhelpful my health centre has been.The only reason I haven’t changed dr’s is that I can’t drive.I avoid going there although when I did have to see someone recently he did send me straight to A & E.I also had bladder cancer.There is lots of support in the bladder cancer group if you would like to join us.Are you in touch with urology ? I bypassed the gp’s altogether just before diagnosis as an out of hours dr suggested I contact urology direct.I was already a long term patient with them under cancer surveillance.I suggest if you are not getting any help via the gp then contact the urology secretaries and they will get onto the consultant.It sounds like you need to be seen.Do you have a specialist nurse ? If so you could contact them and get things moving forward.Best wishes Jane 

Hi Jane , thanks for reading my post . I failed to mention possibly , that im also recovering from a stroke nearly three years ago . Ive had very little support from anyone and had to fight back on my own . The down side is my speech has been affected  , i have a tendency via the stroke to swear . Thats not a great thing when trying to introduce myself with f@@@ as the opening word .I  have changed twice because of moving flat . A and E is a nightmare also due to my brain damage and stutter . Im a bit of a mess at the moment , lol . Its just good to know people are out there . Thanks again . Tommy

Hi Tommy,I nursed my late mum after a brain haemorrhage and multiple strokes.It must be incredibly difficult for you and I’m sad you have haven’t had any support.Strokes are exhausting and it takes a long time to recover from a major one.Mum didn’t have the swearing but her speech was affected and she would put in words that sounded like the ones she wanted so sentences wouldn’t make sense.She was sounded very slurred at times.It seems like you should be getting some support for the stroke too.Mum used to go to a local stroke club which she found helpful.She had exercises from the physio to do daily.Are you living on your own ? 

Sorry for your loss Jane. Its always hard nomatter the cause .  I have what i call 'brain fades' , Total loss of train of thought , which materialise as a stutter to stop the 'f ' word , which seems to be a sick joke . My brai is working [not like my keyboard lol]   It may sound a bit far fetched but having talked with the 'health services'  i think my age group isnt really viable in this day and age. Im not old , just a boy of 59 [i think]  I live on my own since lost wife four years previous . I have my son his wife ad grandchildren in the usa and my intention was to move i with them next year . The way the nhs is , thats more wishfull thinkig on my part 

Sorry that you are on your own Tommy and you are not old.I’m 62.Mum had brain fades too.Her health went right down after she got dementia which was mainly vascular due to the strokes.Moving nearer to your son sounds like something to aim for if you could get healthcare in the USA that is the best thing about the NHS not having to find money and the health insurance.I hope you will join us in the bladder cancer group as you can get emotional support at least.They supported me through cancer and losing mum.

Im usually on my own and its not a problem , that was until i realised nobody really cared what happened .to me ,especially after the bleeds recently . I just think if its not 'covid' they aint interested. I despair at the amount of my 'cancer' friends have gone way too early , due to lack of care . I was i london when  it all started  and arrived in Scotland , then had a stroke ,[hows yer luck ?haha]. I was one of the first to get the new'blue light ' treatment as they were still trialling it [ those were the days when they used to try out things before putting them in humans , the good old days eh ? I have been clear up util then .Im so pleased you took time out of your life to share with me and make me realise , im  never really alone . Thanks  Jane , your a diamond ., Tommy 

I know what you mean.I’ve felt similar and had to chase up urology follow up as it was over a year since I’d had any contact apart from CT scans.I eventually got a urology phone call but it wasn’t helpful.Waiting for scan results now as have a lung problem.Covid has messed up all the appointments at my local hospital and they are desperately trying to catch up.My urologist told me that and he was on the front line at the height of the pandemic.I’m happy if I’ve helped in a small way.Jane