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Hi all

I haven't posted for a while. Post radical cystectomy i failed my CT scan and my left lymph nodes are enlarged and my left kidney .

Oncology said I can't have chemo as it does not work on squamous cell carcinoma, which i have. So they booked a PET scan, and i waited and waited and waited finally i phoned to see what was going on before I sent myself mad with worry.

To be told that the radiographer had cancelled the scan as I didn't meet the criteria??? !! I was so angry

I had an appointment with the Oncology and they fobbed me off with the same line , what did they think we were looking for ...kittens?!

They are suggesting radiotherapy now but won't do it without the PET scan results...more waiting

Meanwhile I've developed hip and groin pain on the left side and only morphine dulls it but doesn't take it away. And stomache ache like never before.

Im still at work in the NHS seeing my own patients and I get very tired. I feel angry.

All there is to do is wait and hope.xx

Thanks for listening to my rants

winkers60 5 days ago

I’m so sorry to hear what you are going through.I hope you can get the radiotherapy and that your pain can be eased.Love Jane xx

Latestart 5 days ago

Oh dear, so sorry to hear this. I hope they can get their combined acts together pdq so you can have some relief. Do keep venting here, I hope it helps a bit. And do you have a good urology CNS? I have found mine has helped sort out some of the wrinkles I have faced as well as explain stuff to me and others. Even the stoma nurses in my hospital, being part of the team, have helped too.

All the best,

Late start x

Podperson 4 days ago in reply to Latestart

Thank you

It's frightening for all cancer patients the wait, we all suspect and feel like we are giving cancer the upper hand by waiting for scans and treatment.

It annoys me this culture in the NHS of "matter of fact" attitude!!??. I work in the NHS with patients and i hear colleagues give advice or barley answer a question , when it was glaring obvious what the patient was asking .

I hope I never become like that. Patients have questions and I've always tried to answer honestly and talk through with the patient until they feel ok about it.

No one is doing that for me. So I'm frustrated and angry.

I have rang urology and left a message but it's difficult, what can they do? Pain changes and new pains in new areas . Trying to get into the doctors is like pulling teeth.

Still for now tomorrow is another day xx

Simon C25 4 days ago in reply to Podperson

Has your surgery not got a cancer champion? I had mine reach out to me when I was foret diagnosed.

If I want doctors appointments I just ring or email her and she sticks it straight on to triage and usually get an apointment either the same day or the very next day now.

Where before trying to get appointments was impossible pretty much.

World checking into.

________________

My name is Simon.

Much love and hope to everyone past future and present.

I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.

Latestart 4 days ago in reply to Podperson

I feel your frustration and in the past have met several doctors, nurses and other allied staff whom I wished could have acted more humanly and sometimes humanely too. Often I suspect a coping mechanism to protect themselves, others have little empathy and others, especially older doctors are deeply introverted - in the wrong profession really but there because they could pass the exams. I feel sorry for all of them because I suspect they know they aren't 'doing it right'.

As a patient I want matter of fact, prompt treatment and will give full cooperation in return. I'm not very touchy-feely either, but I do want to be seen (in both senses of the word).

OK vent over.

Keep the pressure up and I hope you'll get results.

All the best,

Latestart x

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