Update of disaster graft saga

[rosemary johnson]

Doesn't work liek that with me - the more I can work out how much better I could have done something, the more clear it is quite what a total hash ofthe thing I made.
And if, as in this case, working out what I SHOULD have done only higlights how much I SHOULD have known to do that in the first place, the more apparent it is quite how bloody stupid i was not to have done it right - or at least better.
Whereas, something where I don't know what went wrong is merely an intellectual challenge to work out what happened.
In this case, I jolly well should have known how to do it better - and the more I've been thinking about it over the last 15 months, the more apparently it is quite how totally utterly and unbelievaly stupid I was being.
Wich I hadnt answered your question in your previousp ost - after having thought about it enough again to type the answer, felt really rotten all evening!!!!!
As regards "victim" and "survivor" - I've heard of this, but it sounds like yet another case of people trying to mangle the English language to make some point whose validity seems as contorted as the liguistic knots they tie themselves (and anyone else who lets them) up in.
cf. the "assertiveness" brigade - never gone along with their politics, never gone along with their mangling of the English language. When TIm Henman was playing aggressively, he won tennis matches (or sets, games, whatever). If he'd been able to sustain that level of aggressive play, he'd have won a lot more.
OK, there's the simple level of a "survivor" is still alive, whereas a "victim" of, for example, a road accident or an earthquake, may or may not be. And, topically, the 96 victims of the Hillsborough tragedy aren't.
As in that old quiz chestnut about "A plane crashes right on the frontier between two countries. I which country do you bury the survivors?"
No, seriously.......
If one had never fallen victim to the treatment in question, one would never have had to survive it (or, as the acse may be, not).
Though I will make an exception for the phrase "survivor of mental health services", as used in the Disabilty right movement, if only as contrast with "beneficiary" of such things, which fiction only exists in the minds of the "grey suits" running such things - or possibly the medics who want to fob off problems they can't answer onto them, grr grrr grr1
OK, OK, rant off.....
be interested to hear about the stats work, and what it is trying to show, and for whom. And the contact/otherwise with the survivors'/.victims'/whatevers' support groups or similar. Not least having particular interest... as you may know??????
NO more news on complaint.
Have had a letter from a completely different part of the hospital today asking if I'd like to be a governor!
Now, there's a temptation!!!!!!!!!!!!!!!
Rosemary

[Hilary Johnson]

I'm just analysing data, from some organizations nowhere near London, I have no direct contacts with the people on the ground. I would suggest that you or anyone else reading this who has any concerns about domestic violence and wants advice, or information about what help and support is available in their own area, contacts the National Domestic Violence Helpline on 0808 2000 247 - it's free, and doesn't show up on landline bills, and that number can also be found in the emergency numbers section at the front of every Phone Book. Or Google "domestic violence" - there is loads of information online.

I know that the above is nothing to do with KC, but I hope no-one minds me including it, I wouldn't want anyone to be deprived of a chance for support if they need it.

About what I said not working like that for you - well, if it doesn't it doesn't, I won't say any more about it.
H

[Andrew MacLean]

Rosemary

If were you, I'd jump at the chance of being a hospital governor. While influence is never as great as it seems from the outside, your experience as a patient would bring a whole new dimension to their discussions around the table.

Every good wish

Andrew

[rosemary johnson]

Hi Andrew:
Agree in theory. Issue is whether I have the strength, energy, time - and of course the health - to be able to take it on.
And I rather suspect that my name on the list of people who ask for an inquirer's pack will suddenly produce a rush of other candidates...... of the sort, no doubt, like the first bunch of candidates two elections ago......
H:
Agree there are times when working out what went wrong and how to do it better next time can help - like learning how to handle the Little Shits (as Danny calls his mini-Shetlands) successfully. Like, the brown one I now put a bridle on before trying to do anything with him as he's more controllable like that; and I've learned to keep them on smaller circles - the brown one because he's less inclined to try to dash of intothe distance if he's closer to me, and the palomino one because it's easier to tap him on the bum with the end of the whip when he gets lazy!
In this case, though, there ain't likely to be a next time and I should have known better first time round. Whereas I'd never tried training Little SHits before, so am justifiably finding things out for the first time.
If you see waht I mean.
Am still chasing new GP
s place. Worryingly, as hat fever season hots up (literally) problems are mounting again. Presumably rising cortisol levels from hay fevery lungs. But don't dare to try the red inhaler again as that has steroids in it (though it was more effective than the brown one last year).
Rosemary

[rosemary johnson]

I'm really, really fed up!
Got rung up by someone from the neurology hospital yesterday, wanting to know if I knew I'd had an appointment there last year.
Yes, of course I did!!! What does he take me for?
Upshot would seem tobe that I've been referred tot he wrong department, and am likely only to find somoene not addressing the right problem again. He was also trying to talk to me about the letter from my GP, to which could only say he had the advantage over me there, as I still hadn't had a copy of it - over 6 weeks after writing a DPA act for copies of my medical records, which I think is illegal anyway.
SO think I am going to trek up to London on Friday am only to walk in and say "This is a Problem Type X; I think I'm probably in the wrong place for that. Where should I be?"
Bloke on phone wouldn't commit himself to that; doesn't want to suggest my GP might be mistaken...... arrgh!!
Spent half this afternoon round at said GP's plave. Finally got to see the owman (deputy practice manager, I think) who I spoke ot on the phone last Thursday (!) when she promised faithfully someone would ring me back before the end of the day. And guess what?! - not heard a peep from anyone there since.
After an awful lot of to-ing and fro-ing and a long wait, it transpires that:
- new GP says he can't fix an MRI scan and is sure the neurologists will do that. I wonder......
- I finally!!!!!!! have a copy of the referral letter for Friday's appointment. And it's total gibberish!!!! Seeing how well he seemed to understand what I was sayin, how he wrote that, I cannot imagine. Other than a load of bac-covering (What does he mean, he doesn't know what previous neurology consultantions I've had before because my notes haven't arrived? I've explained that to him twice! - and he appeared to understand me perfectly well.)
- absolutely no news, and no-one seems to know anything at all about, referral to an endocrinologist.
- doesn't know anything about DPA request for copies of medical records either.
She is going to ask again about those - she said. And she said she'd ring me herself and not leave it to the GP to do so - he was apparently going to contact me after I spoke to her and she spoke to him last Thursday, and didn't.
Guess what - not heard a peep out of her or anyone else there since I got home.
I did give her a copy of a repeat prescription request for asthma inhalers, which she's supposed to be delivering to the pharmacy downstairs so I should be able to collect it from there soon.... I will see........!
Very very pee'd off with this shower! Next step will be a) information commissioner's office (re DPA non-compliance) and b) complaints office at the PCT.
Wish me luck!
Meanwhile, the premises is now officially a "polyclinic" - it has had various health related thigns for a while, now has a new name officially.
And a new GP practice downstairs.
Dropped in to see them. Officially, they have a drop0in GP service.
Dropped in to see someone. But he can't do anything except advise me to go to my own GP.
One is supposed to be able to register witht he practice, not just dropped in.
Asked: if I sign on with the practice, can you do anything about this in less than umpteen months? Dr non-committal, doesn't seem to know about signing on, said talk to receptionist.
Talked to receptionist and have form to sign on with practice.
Thoroughly fed up with all this palaver.
Anyone here got any ideas how to get some actual health care - rather than mumbling about bureaucracy - from any notional health care provider????
- preferably before I end up in hopsital by ambulance......
Been getting chest pains ..... for some time been lying in bed at night hearing heart racing, and getting periodic palpitations (heart beat going dot-and-carry-one).
Last couple of days, keep getting feeling like I'm wearing a bra that's far too tight, bottom band is too tight and squeezing rib cage, and left boo getting squashed down; and should have bra two sizes bigger. Which clearly sin't the case when I'm lying in bed in just night shirt an dnot got a bra on at all!
At what stage does this become the sort of chest pains I ought to be calling 999 about, anyone know?????
- sure it's all a result of the steroid hypersensitivity and screwed up endocrine system.
Do I really have to end up in ICU with a heart attack - or kidney failure .... or just totally collapsed in public...... before any of the medical profession give a damn???
For that matter, is there the slightest hope any medic will give a damn even if I do?
Aaaarrrghhhhhhhhhh!!!!!!!
Slightly more seriously: does anyone know if there is a central London hospital with a good endocrinology dept and pref an endo. A&E? - pr how on earth to find one?
Meanwhile, I'm supposed to be going back to the eye hospital next Wednesday. Dreading it already. oth eyes really sore withthe hay fever and ever so red. Not heard another peep from the Chief Exec re complaint about factually inaccurate letter new consultant is allegedly trying to claim is "clinical judgement". Don't particlalry want to talk to her. Do want to get rid of STITCH. Rather suspect I'll be palmed off onto a deputy who won't be familiar withthe saga, won't feel confident about removing a stitch, will try to tell me what a wonderful graft it is AAAARGJHHHHHH!!!!!!!!!!
Strongly inclined to ring apptmts section and postpone.
DOn't have the strength to deal with all this.
Badly beed some help. INspiration. Company. Or at least some chocolate fudge cake. Actually, wouldn't mind some quadruple double whisky an doblivion, but daren't....
Rosemary

[Andrew MacLean]

Don't have any direct knowledge of London endocrinology departments, but have you tried entering the terms into a search engine?

I tried just now and found out that Bart's has such a department

http://www.google.com/search?client=saf ... 8&oe=UTF-8

Andrew

[rosemary johnson]

Thanks, Andrew - the Bart's one sounds pretty wide-ranging and well-reputed.
I've noted the phone number and will give them a ring.
Rung the GP's again today, deputy practice manager not in..... no-one with any apparent intelligence there, and all the idiots will say is "Your notes ahven't arrived yet."
SO BLOODY WHAT?????!!!!!!!!
Still waiting for anyone to tell me:
1. what they need to know that I haven't yet told them]
2. what they think they'd find in my notes that I can't tell them, and
3. why they think it would be in my notes if I couldn't tell them.
Seems to be no-one there with the intelligence - or possible they just don't understand plain English well enough - to understand the questions, even!
GRRRRRRRRR!
Actually, will beup in central London tomorrow, so might try to drop in at Barts even....
Wish me luck with the neurologists, won't you?
Rosemary

[Andrew MacLean]

Rosemary

All the best.

Andrew

[Loopy-Lou]

Rosemary, do you mind me asking, how is your graft doing?

[rosemary johnson]

Rosemary, do you mind me asking, how is your graft doing?

You can ask.......
Don't really know.....
THe eye feels very sore and looks red and horrible. That is probably hay fever.
The other one also look sred and sore and feels pretty rotten - that is no doubt hay fever. nd having to wear a lens whenever I decide I really must put one in.
After my last appointment when they said I could stop the glaucoma drops, it went through a spell of feeling sore and dry and horrible from having to readjust to no lumigan.
THen the hay fever season struck, without having "got over" stopping the lumigan first. SO don't really know what contribution is what, but suspect mainly hay fever now.
Haven't tried to put a lens in it again since..... Jan hospital appointent I think....
Vision - still couldn't read any of Snellen chart with it last time in hospital; reading is getting harder, as it still seems to be getting gradually more astigmatic. SOmetimes it goes completely fuzzy - maybe with dryness in warm dry weather - and can't read at all.
Almost-horizontal lines seem nearest to "in focus" still at 4"; almost-vertical about 7.5". This seems to vary still.
Still see the triangles of dots and lines corresponding to each light if I walk up the road after dark (or even look out the window up the road). Tend to walk about after dark now with it shut ot avoid those triangles.
Last time I had the lens in, the world was going misty after two hours.
IOP was down to well within "normal" bounds last appointment and optic disk looked fine.
Eye lids feel quite sore and it gets sticky at times - all probably hay fever. I think the dexa. was masking the hay fever effects last year and I'm now back to normal.
What else can I tell you?
Oh yes, one teeny piece of good news - it had a big and very visible stye or spot of some sort on the lower eyelid, since at least January, I think as result of adverse reaction to glaucoma drops. I just looked inthe bathroom mirror and the big yellow-pus coloured blister has gone - or if not gone, at least reduced markedly. Need to have a better look in a bigger mirror and better light.
It is still markedly more light-sensitive than it was pre-graft - now about as light sensitive naked as it was before with the lens in (and markedly worse with lens when I last wore it).
Rosemary