Sunday times

I have to say that my biggest concern is how many of us will come out of "limbo" and how many will be left to continue and just become causalties. Sorry if that sounds negative. 

My treatment was stopped in February after a chest infection issue but then of course the virus took hold and it was decided not to restart the treatment which was working extremely well due to my problems when I go onto any medication. I was then transfered to the Pallative care team and have been really not well since and was coming to the point of accepting the inevitable. 

On Thursday however I had a telephone consultation with an immunologist that I had been awaiting for over a year. Initially this was to do with my supposed allergies to meds etc and the serious side effects which were making treatment very difficult. However as each appointment was cancelled I just got on with things accepting no more operations were possible if anesthesia was needed and no big guns chemo. No alcohol products etc. A DNR was even agreed to.

The person who rang was a professor and very knowledgeable she had read everything and even found some results for a test a doctor did in 2014  I had told others about but they could not find them. It was quite complex stuff and she wanted me to take notes as they are struggling with admin staffing so her letters are very delayed. Gist was I am not allergic to things I have a condition that means my liver does not produce necessary enzymes to break things down. Hence extreme long lasting sometimes life threatening reactions to drugs. I am unfortunate that I also have the non genetic side of the same condition so losing a kidney, having chemo and the biggie the liver mets are making it worse. No cures unfortunately and she sympathized re any future pain relief as I will be a clinicians worst nightmare apparently. While talking to me however I made a comment that although my current symptoms seemed liver related that I had asked about this and been told my liver results were fine. She almost choked she asked me to wait while she double checked and then read me my latest results and emphasized how bad they were and that they probably accounted for most if not all of my current symptoms. 

The difference in results being on the meds to off is great. as it was last year when I had to fight to have the meds reinstated. 

I am however still awaiting another scan and I have a bad feeling that the cancer may have taken root in yet another place. That is something we will not know until we get the scan and of course that is delayed because the admin is short staffed. However if it is that it is all about the liver mets it is annoying to think these are being allowed to run wild when there is medication I tolerated that was working.  

I will try to do something over the next week's to get more answers and make as informed a decision as I can to see if getting the meds back is possible again. But I do believe that if the treatment had continued my quality of life would have been much better over the last few months and of course is it now too late to do anything about it. My case will not be the worst case scenario and many will have harder stories to tell some will not survive to tell them unfortunately. 

Sorry if I have bored you with the detail but I just think people don't realise how far reaching this virus situation and the allocation of funding to it has affected other groups. 

Take care all,  looks like another lovely day out there. 

Hello Maz59, is this a small step forward? It does sound like you have the best of the best on your case now. There is no chance of boring people with this sort of information, you could be changing peoples future lives when you post. It is appalling that you have had to fight for so long, I hope things become easier for you.

Well unfortunately the outcome is that due to the rarity of the situation there is no help that can be offered. Other than everything has to be in very small doses built up over extended periods of time. Which of course is not what cancer treatment does and I understand that. Pain management etc is going to be a grin and bear it for as long as I can then accept drug induced unconsciousness. With perhaps one exception if I can start a regime soon, need to follow up but that might take some digging. 

It is a bad day today symptom wise but at least I now know there is a chance it could be all tied to one area of need that could possibly be made better. 

At times like these the weekends always seem very long but on Monday I will start chasing at least the scan. 

Hope things are going steady for you at present. 

Hi and

Good to see your names in the posts again. 

Tvman xx

Hi  I'm sorry they decided not to run the story! Have they said they are not running it or just postponing it for a while, maybe to see if things improve. I do hope that is what they decide!  I see you were up late or early! Does that mean you are still on the steroids!!!