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Our instinct to survive is very strong so when an expert i.e. consultant - even one you've never met before - tells you that he/she wants you to have RT and Prostap, you will in all probability jump at the chance to be 'cured'.  You may only have known you have PC for a day or two so you are not in a fully rational state of mind.  The locum who did the biopsy and told me what treatment he wanted me to go on said he was "going to 'cure' me."  Hearing the word 'cure', who is not going to jump at the chance of beating PC?

So off I go and read up stories of how hormone treatment is not so bad and so on.  Then on the day I started RT the consultant in Leeds asks me if I am aware of the side effects of both RT and HT.  I mentioned that this was the way to 'cure' me as told by the previous consultant.  She raised her eyebrows and said, 'No this is not a cure.  You are very unlikely to be cured.'  

So what do you do?  Your first RT session is 5 minutes away, you've done your first enema, you've waited for this day and the hope it is going to give you.  Of course you go ahead and do what they say.  No one ever told me the side effects were this bad.  Some people, allegedly, breeze through HT with little or no problems.  I find that impossible to believe.  My brother who is as laid back as anyone has said he just grins and bears it as he has no real choice. 

Even the HT 'holiday' is a misnomer.  It takes so long to recover you don't feel as though you have actually been taken off the drug.  More than 6 months for any improvement for me and even now, 10 months in, still got some side effects.  I was warned some men never actually lose the effects and in many cases at least 12 months before seeing improvement.  And in that time the PSA is going up so no doubt it wont be too long before the conversation turns to, 'it might be a good idea to go back on Prostap to keep the PSA under control.'

'Pseudo-illness'?  Yes, that probably sums it up for some who don't know or understand.  

While I come across on here as a moaning old Victor, I do live a 'normal' as possible life.  I've landscaped the gardens, built and fitted a kitchen, knocked down a garage and so on.  The problem then is that some of the family seem to think there is nothing wrong with me as I carry on as before.  Even my wife has admitted she 'forgets' sometimes!

On a positive note, I have been to a meeting with the West Yorkshire and Harrogate Cancer Alliance concerning the disparity in treatment between 2 adjoining CCGs.  They have a large meeting planned for late September in Wakefield and they have asked me to make a short presentation to all those health professionals in the area to show how this affected my treatment. 

I've also been to a meeting with the CCG cancer reps to try and get the same regime where I now live as I did at my previous CCG (4.5 miles away). This anomaly despite both CCGs using the same hospital.  I've tackled the chair of the CCG at a 'Happy NHS 70th Birthday' celebratory event which was not best received.   Just had a letter published as the letter of the week in the local paper who are tackling the poor state of the CCG - £16.6m in the red - but able, it seems, to award themselves a 4% pay rise taking the chair's pay to £130,000 p.a. (on top of his GP salary for goodness sake) and the chief executive's to £120,000.  Amazing, reward yourselves for incompetence.

@ Lynn

I was living in Ossett and referred to Pinderfields.  They could do no treatment so sent to Jimmy's.  Blood tests and Prostap injections done by the GP nurse.  Then we moved house from the Wakefield CCG to North Kirklees CCG area (4.5 miles).  GP says NKCCG has not adopted the policy for  monitoring so they do the blood test - but only a the basic PSA, no liver, kidney or other functions of the full test - and give the Prostap.  They do not monitor so if you are depressed, not sleeping, pins and needles and all the other side effects then no one knows and no one is told.

The consultant at Jimmy's understands but is not interested in getting into an NHS policy war so referred me back to Pinderfields.  The oncology nurse travelled form Pinderfields to Dewsbury - same mid Yorkshire Hospital trust - and monitored me and gave me the injection.   and I agreed to get all the future  blood tests done at the GP from then on.  She failed to put anything on the system in October 2017 so no telephone monitoring in January '18.  Next test April '18 and no blood test forms.  On 3 occasions I contacted Pinderfields oncology to get it sorted and all 3 times they promised it had been done.  It had not.  Only after making the complaint did I get the apology from the NHS and the consultant at Pinderfields with the arrival of a blood test form and a telephone appointment for July.  That went ahead okay.

Next PSA test is due in October so waiting to see if the form arrives - the GP will not do it without one despite it being a right for any male over 50 to have one under current NHS guidelines - and already had a letter cancelling the telephone appointment.  Except that I have never been told there even was one!  How can anyone have faith in the NHS abilities with this sort of incompetence?

If the October appointments fall apart for the blood form and follow up call, I will go back to Jimmy's and ask the consultant to put me back on their system.  At the very least, I will be in good hands there as their oncology nurses are fantastic.  

Ha! 
Mr Angry...I can to some degree sympathise and understand where you're coming from... 

I was referred out of area for my RP as there was no hospital local who had the facilities or know how to perform a RP ....do you think that the medics involved with my case  would / could talk to one another?... 
No b****y chance! 

Fortunately for me, I haven't to date needed any serious follow up since my surgery..

Regular PSA blood tests are an issue ...as my GP surgery will not do one without the relevant 'bar code' request from my consultant... all about budgets and who's paying I would imagine? 

It's very frustrating in this day and age that I have to kick people's asses to get anyone to act! 

I'm sure if I was not on the ball and not done quite a bit of research on the subject...together with all the useful info I've learned from others on this site I would have been overlooked to some extent.
My local consultant is very helpful now that he's aware I'm proactive on the subject.. 

Best Wishes
Luther