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

I really don't know what to say.

Mol

I hope that things start improving for you soon
what is really annoying me is the seeming incompetence of your doctors it sounds like they need to hold a multi-disaplinary meeting (MDT) sit round the table - with you or someone you trust to tell them exactly what the issues are and to get them sorted out, this not talking to each other and not listening to you is ridiculous and they need to get it sorted out I want to come down there and shout at them till they sort it out

I'm so annoyed that anyone should have to put up with this but you need it less than most people and its unacceptable,

wishing you well in the future and a fun filled marriage

Its starting to peeve me a bit too. They do have MDT meetings; but they're not very MDT.-
Oncology have an MDT to discuss, say my CT scan last week; clearly by the point the letter from the GP got to oncology, and triggered their wanting a CT scan, then, the message got lost as to why* we wanted a CT; yes, to rule out the cancer returning, but the reason we wanted to rule that out, is because I still have oedima in my legs, feet (in particular) and arms/hands; which I first told them about last year; however... that real reason for the scan in the first place, just gets ignored, as soon as they get the CT, see I'm still in remission, I guess they just don't care about the side effects, just that I'm not upsetting their departments statistics.

Endocrinology occasionally I guess have MDT too, but the only one I recall was when I got the really useful phonecall;
A consultant phoned me, and said 'The MRI scan is clear'.

'Clear' in this context, meaning 'its a loverly clear picture'.

not, as I was asking, clear as in 'no signs of lymphoma in the brain o r pituitary'. - when I picked up something odd in the tone with which he said 'clear', and replied; "so no sign of lymphoma in the piuitary or brain then?" - consultant paniced.
said he needed to speak to someone.

A few hours later, radiology phoned, as they'd then gone to look at the scan, do what was ment to have been done with the MRI in the first place.

I'm cognitivly opperating on about 20% of my 'normal' ATM. my doctors are utter ing morons.

You're making me reconsider my desire for national healthcare, 2legs.

Its not a NHS problem, IMO. Without the NHS I'd have died last year as I'd not have been able to afford the chemo drugs, etc. heck, even now, were I having to pay for the drugs, my nabido injection is £80 , just for the actual testosterone fluid, plus I guess whatever one would be charged for the administration of it, administering it, and doing the two blood tests each tiem for PSA levels and testosterone levelsetc... my hydrocortisone is from memory about £78 a box, and I get through at least tow of them a month, plus however much the levothyroxin tablets adn melatonin tablets are each month.
Plus, witout the NHS I'd I guess not have any treament on my wedding day when I went into addisonian crisis, so no ambelence and paramedics to save my life, no emergency adminsions at hospital to then stabelise me, X-ray, ECG blood test, etc, me, nor the two day stay in hospital

Basically. the main problem with the departments here, at the hospital, is communication, between them, and between themsvels and the patient. plus, I think endocrinology don't see many people with my endo problems and probably noone who has reverse reaction to the meds like I do.

We've only got a partial NhS in the UK remember, government and government after governemnt have all been slowely dismantling the NHS on purpose, to make it be less good, in order to then justify privitising it; and giving their friends jobs running the new privitised healthcare.
But, mainly its a communication problems... half of which probably relates to the NHS not having a working computer system still

Is it actually a MDT if only one department sit down to it? To me, that says all the various departments get together, not just, say, a doctor and nurse from oncology.

Deb

I'm not entirely sure, but its the impression I get from waht little glimmers of information they lower themsevels to reveal to me... - but, yeh, it doesn't seem very multi... Got to fast tonight, from middnight, until the end of the test at hospital tomorrow, which starts a bit before 9 and ends about midday or 1 PM I think; then I get my intermuscular testosterone injection (which given I'm in hot flush teoratory again I guess I need ATM ) the test is... I think tomorrow, called a glucagon test; its to check my growth hormone by a more detailed method ithink that the origional test did; to see if I'm eligable for growth hormone replacement - which may make me feel better, although the idea of dairly injections (just into tummy fat I think), for the rest of my life doesn't seem wildly appealing in some respects - I am assuming they can at least offer me a form I can injection myself, unlike my emergency hydrocortisone injection kit, which I can't myself use got a lot of questions for them tomorrow though, not least chasing up the results of my all day cortisol curve test, from... ages and ages back

I don't post often enough, but I do read and think of you a lot. I hope you get some sense out of them.

well yesterday was the first time a nurse or anyone suggested the medical support stockings... She suggested they might help but it probably wasn't worth me bothering - I can't have diuretics they think as the addisons affects sodim/potassim levels and so diuretics woudl mess that up
Tried pushign nurses to get me an appointment with the Dr/Prof brought forward; next is the 19th August they said they'd try. I did try my best, and informed the nurses that oedima with hydrocortisone is one of the side effectes listed as needing immeidate treatment, as it can then lead to cardiac failure if untreated.
Nurse replied; " that w sounds horrible"
needed two canulars to get bloods for the day; each took two attempts to get in; first lasted most the day but then had to be replaced as it blocked/failed, hence needed the second. both arms bruised.
Can't now raise right arm above my ehad, due to what I now assume to also be oedima (not tennis elbow as my GP thought).
Doubt even the support stockings would help with oedima in my hands and arms

felt more ill today than I have in ages.
got up took drugs, then went back to bed until about 2 PM, when I took 1 PM drugs, and ate something.
Then did nothering for rest ot the day, just sat in scielence, hurting. brain just not functioning today.

Oh legs I'm so sorry I've not been keeping up with your journals. I had my PIP assessment back in April and they still haven't started paying it yet. I'm going to get high rate for care and standard for mobility but have appealed. I would expect you to get the same or higher, it's a bloody pain in the arse.

Mini

I shouild get higher for mobility I think, but not so sure about care... as I'm extra ill now, since the hormone rubbish I might/hope I get the higher care too still waiting to hear back