Having been to see the specialist (although he was not there!), and my stress/worry/fear levels having subsided to about 6/10 from the 12/10 they had been on occasions over the last week, I have decided to continue with this occasional blog/diary about my experiences living with a suspect pituitary (details later).
This is going to be a mixture of personal reflections and observations (rational), feelings (affect) and observations on the performance of our wonderful NHS.
First of all, thanks to the wonderful Suzanne. She gave me a chance to talk about this last week, she dug out loads of stuff from the internet and kept it to herself when I said that I wanted to see the specialist before finding out more myself, and she used that research to help me question and clarify during the consultation today. I cannot imagine how she has felt during the last week or so, but she has rarely shown her concern and for that I love her even more.
Firstly, and most importantly for the next few weeks, it turns out that pituitary adenomas are not usually either aggressive or metastatic and that there are treatment options.
I AM NOT GOING TO DIE IN THE NEAR FUTURE! 🙂
However, there are a series of complications about which I need to be aware, possibly the most important being that an adenoma can cause pressure on the optic nerve (which just happens to pass very close to the pituitary). This can threaten sight and so one of the first tests I am lined up for is from the optician who will test my peripheral vision. Suzanne also says that I have to watch out for any increase in fluid intake or peeing, because that might suggest onset of diabetes.
I am sure that there will be a lot more, and that can wait until after the blood tests (six tubes today – giving blood could have taken less!) and Multi Disciplinary Team meeting (MDT) who will apparently come together to review my details and decide what to do next. So, nothing to do but wait for the moment…
So what about the NHS? I am pretty ambivalent at the moment. On the one hand I got a quick referral (7 days), my bloods were taken while I waited and the young registrar was as reassuring as I needed; on the other hand the consultant I was scheduled to see was not there and so I saw a very helpful registrar instead, she was as forthcoming as possible without knowing any bloods or seeing the scan that started all this fuss. The scan, the scan. Surely it could have been available , surely the single paragraph from BioBank to my GP should have been with my referral papers, surely the Registrar should not have had to ask me if I had a number for Biobank (and come to that surely the doctor who saw me at my GPs should have known about Biobank – I had to explain to her what it was all about). Now I know that Biobank is fundamentally a research instrument, and I am genuinely surprised that the two medics I have seen did not know about it.
And how am I feeling? Relieved, for one. The line in capitals above is not hype – I genuinely went along this afternoon as prepared as I could be for being given a ‘death sentence’. Now I know we are far from our of the woods yet, and I also believe that if the prognosis had been massively bad I would not be here writing this blog. So fingers crossed and I am nearly ready to start my own research.
One question remains – who (if anyone) to tell? I am tempted to keep it between Suzanne and I at least until we get the results of the test and the MDT. I can’t see how it helps others to know, it helps me enough that I can share with Suzanne and I really don’t want people who can do nothing about my situation to be worrying. Perhaps the right time is when I can be clear about the diagnosis/prognosis?