Learning

I've not been writing here because I wanted to condense everything into one post. Thank you for the kind comments, just knowing someone cares is helping me to try and keep going.

I wrote before about finding out Dad isn't well. Since then a lot of things have come to light and I'm far from being surprised by that but I am feeling somewhat disappointed. Dad was diagnosed almost 18mths ago, he doesn't seem to realise this which is a blessing. He's been tried on Aricept but it was discontinued, with advice, because of the side-effects he was experiencing. Dad doesn't realise what Aricept actually is, he thinks it's for hypertension. I've bought a couple of books to try and help me understand what's going on for him, to be honest I'm floundering with this one. All I want is to help/support him as much as possible so I thought that getting a couple of books about others who have experienced loved ones having this illness would be as good a place as any to start.

Things with me seem to be sort of calming down. (jinxed it now)

Saw my specialist yesterday to discuss my latest MRI and blood tests. He feels confident that we can monitor things with regular blood work, six monthly clinics and another MRI in July 2011. Further to that he is arranging for me to have a range of other blood tests done, most of them I've had before and it's just straightforward annual monitoring (liver, full blood, fasting glucose etc) a couple are new to me, one which I can't remember the name of because it sounded complicated and the other is a DNA screen for chromosome mutation.

The DNA is specifically looking for irregularities on Chromosome 11 which results in tumours forming in the endocrine system. My tumour was/is in my Pituitary Gland and was a macroadenoma (part prolactinoma, part non-functioning) I use is and was interchangeably because surgery removed almost all of the disease but there is some rogue tissue still there. The reason my specialist is getting the DNA screening done is because he feels it may be the case that I have a disorder called Familial Multiple Endocrine Neoplasia Type 1 (fMEN1) He's basing that on my illness and the fact that a number of family members have had problems with high calcium resulting in intervention being necessary. Also because two relatives have had endocrine tumours.

It sounds a bit drastic or scary to be having this done but I really feel that this is a positive thing to be investigating. If the test comes back positive I will be able (hopefully) to be monitored for signs of other problems coming to light so they can be dealt with fast and with minimum fuss. If it comes back negative it's one less thing to stress about. Due to this I can't see any drawbacks to consenting to having the DNA test done.

So, that's where I'm at. There are other things I could write about but these are the main two right now.
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Oh Well

So, I had a little jaunt to hospital on Wednesday. I don't remember a thing about it and I've lost yesterday too. No bad thing, just a little weird. It's not like memory loss from alcohol or illicit substances. Anyway, I've got a set of results in my grubby paw so at least I know what's going on.

To be perfectly honest I don't care very much about what's wrong. More medication, another test to be done (this time under GA) and then surgery to follow. I don't have a treatment plan for the other issue yet but I'm guessing that'll be a second surgery for the same problem as before.

It's almost funny. I probably need two separate operations and I know fine well that it'll be two different appointments and admissions for those. I don't totally get why the NHS can't have some system by which the two operations are done at the same time and the investigation I need under the GA in that same slot. Surely, that'd save money, time and effort?

Got to confess, I feel more than slightly guilty about all of the resources I'm taking from the NHS. Factor in all the drugs, tests, appointments, scans and various other bits and pieces and they must be spending an absolute fortune on me. Who am I to take all of that and not give anything back? There are so many people on waiting lists and yet here I am taking up all that time and money. I'm not even allowed to donate blood because the Blood Transfusion Service keep saying no.

I get totally confused by the blood grouping system so I can't even talk about any of it. My biology isn't too crash hot when it comes to remembering letters and what they mean. Strange because I memorised the Periodic Table with ease and can still remember most of it now.

Ok, I'm starting to meander so will sign off just now.
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