h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Remission. complete. so sayth consultant today. thank BoB I'm getting qutie exausted with it all. Just endocrine left to sort out, assuming, of course the MRI on the pituitary don't w show any adinoma or lymphoma etc.
Just had goat curry and peas n rice

Oh dear BoB almite-y. Please do NOT scare me with subject lines like this.

Cool old Guy on a crashing system
"OK Keep up the not having 'adinoma or lymphoma etc' whatevers. "

Ooops! sorry, wasn't ment to be a scarey title!

Just wish I wasn't quite so tired.... kinda just feels 'flat' at the moment... - its gona take months for all this aching, and stuff to receed... - oncologist basically said yeh, looks like I'm stuck with a ton of residual stuff, that won't go; the loss of sensation in my hands, arms, etc, and the bad coordiantion (due to distruction of the nerves ersponsible for letting your brain know where your own body parts are, as it were) Hoping the pain in teh soudler might go, and the loss of sensation on my shoulder/chest one side might also vanish (guess thats radiation).

Didn't want to press them with much, really, clearly they just want you gone, once htey've finished... - endocrinology is the next challange. senaptin test 9 AM friday on my Adrenals... can't recall what I read about it, I'm sure I recll it being unplesent and painful; which is good; nothing out of the oridnary or shocking , just more pain and stuff and needles, natch mmmm... endorphins...

"Hidden" is also a disturbing title.

now I'm like officially in remission... can I go back to just being silly all the time? hmm. err... I'm too tired I think for much at the moment really

that's the best news I've seen in ages.

Just now really wishing I'd been able to wangle some more sleeping tablets ouf out of the consultant... now ben awake... err, about 24 hours... if I don't sleep tonight, I'll almost certainly have to miss the Friday hospital appointment; as I'm ment to turn up to that with no morning drugs inside me, and, after 48 hours not sleeping, no hydrocortisone would almost certianly mean another seizure I thinks - I had to take 'this mronings' one, at about 5.30 when I finally gave up tring to sleep and got up, to try make my muscles and joints stop aching - survived since then so far on fennel tea, black sabbath, ozzy, Zappa and the bee gees... seriously - but... now.... William's just got up, so I think caffine is next

It's good news week



Well, at least today it is

There was otter good news too... which I may or may not have mentioned... - William's found a buyer for his house, and will be moving out by march, giving us interum time, to sort out here, and at his, and me to give lodger notice, and for us to then live ehre together Oh, and ... less than a month before I get a visitor who I've ... missed not seeing since ... last August I just need to get fit/well at some point Must find food now though... this messed up not sleeping, combined with the hormonal weirdness and medication is... so messing with all of me now err... - and as if to prove as much, the err testosterone is still randomly triggering pubety like resonses in me... - as it should; I.E., at the least oppertune moments Its great eing able to laugh at other's misfortunes... even better when its your own misfotunes your laughing at right... must build some food, and then either shower, and wake up to go into town, or just crash out and hswer and town later... - either option messes up the medication timing even more of course - now tryign to time it not only for today, but so the final dose today is late enough, that I can survive to get to hospital for 9 AM, to have the stress test on my adrenals, whilst I've got no steroid in me I've a feeling that will be an uncumfortable bus ride to hospital in the morning involving lots of feeling dizzy and fainty and passty outty... hmm... kinda getting used to those feelings though, so nuffin new I guess

Fab news

However...if you still have ongoing issues related to the cancer and it's treatment then oncology aren't finished and you should press them as much as you need.

Deb

thanks... yeh, I should... or course,could, but, for a lot of it, there really isn't any point; nothing can be done about the neruopathy, the sleeping thing, is caused by all kinds of everything; probably more endocrine to be honest I'd imagine... the fatigue, weakness etc., well, thats just as is, and should irmpove with time, exercise etc; which of course, would help sleep, and help reduce weight again (though of course weight is also largely endocrine in origion at the moment)

then of course, stuff comes from the not sleeping... the dizzyness just now in town, light headedness, etc, thats just over tired... - I guess the hallucinating last night was tiredness too...

but... all IN all I'm OK really.. feeling fitter and stronger etc, just like today, miss a nights sleep, and then... oo dunno about 29 or 30 hours so far awake, and my endocrine medication all over the place due to odd timings, and oddly, I go all over the place - may try follow up some oncology tihings though, if we can...

If you're afraid of passing out, I'd consider taking a taxi.

No point taking an unecessary risk as you're coming to the end of the course.

pah! nonsense! - I get a lot of feeling* like I'm about to pass out, but I don't think it'd actually make me pass out... well... on the basis of evidence so far, its not - anyhow, the cab would cost a fortune!- that's beer money! should be fine anyhow; if I sleep tonight, then I won't be so in negative equity for cortisone/hydrocrotisone, come morning, so oughta cope easily with just a couple hours longer than useual, before taking the big morning dose - think we'll leave here circa 7 AM, to get to hospital before 9, for the bloods at 9, to get baseline level, then the either intramuscular or IV injection of ... err, dunno whatever it is they use to 'shock' the adrenals, then another blood test some time after, to see if the adrenals were sufficiently able to be shocked and thence produce the cortisole... - at that point I can take my normal morning dose of the hydrocortisone I think - just pondering which veins they'll use... - oughta use my port really but it'd be virtually impossible to find a suitable nurse to access it, that early in the day, and I'm not even sure they can use a port for the senaptin test... - yeh. yeh. I know; its ment to be their job to orgaise and think through such things, but as they don't I have too s o much forf the advocasy thinggy, still not even had a call or Email back from the patient leiason people