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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When You're Going Through Hell...........

.......Keep Going. The past 13days have been filled with pain, loneliness, fear and tears. I've not got any words left. I'm rapidly learning, yet again, who my friends are. I have two left and right now I'm too tired to even care. It hurts but that's probably because things in general are so raw.

Don't know what to say.
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Broken Crystal

I notice that I wrote my last entry on Sunday 25th July and without trying to give excuses for what I said I do have to explain the reasons for it. That day was the anniversary of the best friend I've ever had committing suicide. It's been three years but it is still exceptionally raw and painful. I spent the whole of Saturday and Sunday consumed with a mixture of grief and utter guilt. I ended up totally distraught and I honestly thought that the pain would never end.

To be honest, I'm still not back to my usual self. This week has been horrendous for other reasons and it has caused me to start questioning everything. Things that I thought were certain and that I thought I had managed to reconcile within myself have been thrown into the air and shattered into 1000 pieces.

I've written about Dad before, about how he has been my rock, carer, confidant. How he's stuck with me through the stupid, reckless, heartbreaking. His unconditional love and his calm and loving reading of bedtime stories, making up animal noises for when he wiped my ears with a cloth at my bathtime. This giant of a man who gave so much to so many people, not least his family and clients at work. A survivor of a ruptured Aortic Aneurysm 40miles from hospital in the middle of the night. They called him Lazarus and a Walking Miracle. Well they might, the 13th anniversary of his surgery passed last week.

I just call him Dad.

On Wednesday I learned that my wonderful, loving, gentle Dad is going through a horrible and rapid onset of Dementia.

He has fixed me up over the years, washed grazed knees and done so much more. I've done similar for him a few times. The hardest part now is knowing that there's no way I can do anything to fix this. He is changing right before my eyes, it's as if someone has given him a personality and memory transplant.

I'm not prepared for this. I've always known that as a very late baby I would lose Dad and I've prepared myself for that. But I've never factored in this, I thought death would take him before his mind started wearing out. I wish I had been right.
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