I have ruled out surgery as that will remove what little I have left that sort of makes me human and that would be the ability to take liquids via the mouth, it would mean the reinsertion of a PEG and I will not go that route for any reason. 
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Yes, I can understand that. In your position, I’d want to be able to eat and drink normally too.
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As would I but I haven’t eaten for twelves years now and I do miss a fried breakfast, fish and chips and a decent plate of cottage pie.
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@MrFraggle67 , You haven’t mentioned getting a prognosis MrF?
I think l would want to know what was in store
Donkeyman! 
The reason being I have not had one, what I got in September was when I asked why there was to be a three month delay on a treatment decision was “The 3 months wait was to try to establish what trajectory the disease is taking both symptomatically and on scans as well as to allow you to consider immunotherapy”
Now this delay actually went to six months and I got nothing from the oncologist and my next appointment is not until June. Now my GP thinks this is unacceptable and the reason I am seeking a second opinion outside my health board.
On the plus side I finally got around to making a will. 
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@MrFraggle67 , I’ve been reading your comments and the responses from others. Don’t think there’s anything of value that I can add, but wanted you to know that I’m thinking of you and hoping that somehow something gets resolved. Sounds like an absolute shower, as Terry Thomas might say!!
@Melgal70
They are, well the management is a one or two of the consultants who confuse themselves with god.
There was an independent report done on the management and certain departments were found not fit for purpose, particularly the Patient Experience Team which is where you go in the event of a complaint or just information, they are shocking they will just ignore questions if they do not like them.
I have seriously considered moving just to get away from this health board.
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Have you tried your MP?
Am just thinking that that recent high profile about that maternity hospital debacle has made inept trusts high profile, and it might be a good time to mention your own trust’s apparent incompetence.
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I have been blessed with a staunch Sturgeon supporter and who’s husband works for the NHS. When I got in touch pretty much her first words were that the Scottish NHS and NHS Lothian were better than England and apart from that she really did not want to know.
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How about going to the press? Shame the MP as well as the health boards into action?
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Might be worth drafting a letter out and posting it to all of the nationals as well as private eye, detailing everything and including the MPs response.
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Crumbs MrFraggle hugs, all of this has been hard to read and is unbelievable. I agree with Melgal’s last post, if you feel up to it. It must be absolutely exhausting.
The media does not really do it for me I did try twelve years ago but they are not interested in one person if there was a bunch of then it may be different.
As for exhausting not really frustrating as you are constantly fighting these people it seems getting answer to even simple questions is like pulling teeth.
Fair enough. For all you know, there might be a bunch of them though and by throwing a letter out to as many nationals as possible, your case might be the very one that leads to a journo having a sufficient number of complaints to make it a viable investigation.
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I used the Freedom of Information act quite a bit during my original complaint because certain information was deliberately being kept from me. They used the Data Protection Act to justify this but they were lying and should not have been doing so so I got the information.
I I did have a couple of people contact me as they had seen my FOI request and we sort of helped each other with different aspects of our complaints as the health board will throw everything at you and do not fight fair, matters not that your complaint is justified.
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Sorry to keep on with ideas Mr F, but l believe there are lawyers available
that specialize in medical malpractice ? Some of them work pro-bono so
you are not saddled with high legal fees !! Might be worth contacting one
of them and just leave it to them ?? Save you all the frustration plus
the advantage that the malpractisers will have to pay more for their
misdeeds??
Sorry l can’t help with finding one of these lawyers but l am sure Google
will do it for you !!
Donkeyman! 
Funny I approached several lawyers and even the no win no fee were not willing to take my case on so I did it myself, took me a while and it was a tough fight but I did have the support of my MP at the time who was also SNP but put his constituents first, great man. I sort of won but for the most part they got away with it.
Don’t forget I was very ill at the time the side effects for me lasted for around 5 years and it was a struggle especially when obstacles are put in your way.
I went to my local CAB office with my problem and they advised me to speak to someone who ‘Specialised’ in NHS cases, turned out that she was also paid by the NHS so how could she possibly be unbiased.
It was also my first experience of a potentially life threatening condition so I really had not got a clue as to the questions I should be asking etc, so you could argue that that was my fault. This time around I am not being so naïve and am asking the right questions and am trying to see all test and scan results but of course these are covered by the Data Protection Act up here and it is necessary to fill out one of these request forms then wait up to 20 days to get them by snail mail as it seems that it more secure than their own email service protected by a password and one time code.
https://www.nhslothian.scot/YourRights/DataProtection/Pages/Subject-Access-Requests.aspx
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I admire your strength and courage Mr F .
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The SNP is as much use as a chocolate teapot.
I really don’t understand how they ever got into power.