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

Took them a while... got an E-mail ... Hmmm.
I see some of my concernes are addressed in it. apparently I'm now good to go on the starting self injecting growth hormone each day so I assume I need to get that organised so I can be trained up using the injection device, and actually get the injection device and the needles (they don't send them with the GH delivery; I assume sensibly to prevent patients just 'figuring it out' themselves, and starting the injections without training ) They've OK-ed my having a bone density scan, but no answer as to why I've not already had one, and why it isn't standard practise as according to all national and international guidelines, to have in place a set-up where I'd have autiomatiacally already had one prior to commencing steorids, and then have just had my second one a year after as it were ...) not sure they've satisfactory addressed other issues, they've tried to go a bit medically speak as regards the oedema, but that doesn't really phase me, so I think they're just.... ignoring it still and I'm not sure they've addressed the other issues either.... will have to think how to procede.... partial success, maybe this will trigger their attention for a little while, to actually pay attention to my bloods etc, rather than ignoring them.... until next they get lapse and I have to do something ... stunning to grab their attention....

Oh, and as regards the oedema, although the ECG at hospital was normal, they're putting in a referal for me to have an .... err, the ultrasound thinggy of the heart.... - electrocardiogram? I think its called, which the GP here had requested ages and ages back; but as even the GP agreed, on a second visit, the consultant at hospital wont' get as easily ignored in putting in such a request, as a lowly GP does ... the hospital have at least addressed all points I think.... - but only so far as in they're agreeing to do, what they had more-or-less already agreed to do, months back, weeks back, etc, only which they were not doing, until the nasty letter I wrote to them... so... to get anything done, one has to write hate mail to the dept sec and it is still shocking to me, they don't seem to have set protocols, say for the bone density scan, which is really straight forward, as everything guideline wise says they have do do it, yet, they don't have a set timetable on patients treatment plans for doing it... - ahh, 'treatment plan', I really doubt they have one at all - sadly they didn't reveal my 'numbers' as goes thyroid levels, but she said they look good enough for the GH, so hopefully they're not just* in range, as that is not (again according to guidelines), satisifactory for commencing GH treatment - I've really been trying to not pin all my hopes on the growth hormone; I know some people have found its the one hormone that just 'fixes' a lot... if not everything, but, simularly for some patients it barely does anything.... - a little concerned one of the possible side effects from it is oedema, which as i already have oedema, Ill not really know that i'm getting extra, due to the GH; simularly pain in joints on small bones, like fingers is a common side effect; my hands are in constant pain now, already, due (I assume) to the oedema)... - I was kinda hoping they might have sorted the oedmea in time before I commenced the GH; as, the normal protocol is, on noticing such a side effect as oedmea, etc., to slightly lower the GH dose, and then after a few weeks, increase it gradually again - I do hope they're a bit more paything attention to my GH levels, when I start replacement as the levels on that are kind of crucial, not least as I don't want OTT levels, as it can encourage cancer growth, which would ... be a bit of a bummer really

We shall be wathing this space. Hope you get a reply.

Erm, I don't mean a reply, I mean a follow-up to the reply.

yeh; I should get a phonecall from the GH nurse at hohspital; then I can phone the GH nurse from the GH company, to get trained up to self inject;
I should get a letter from cardiology (probably after Christmas I guess), for the heart scan,
I should get a letter from ... err, radiology I guess, for the bone density scan (think its a modified X-ray or something ... I cna't quite recall now...)
I s should have another app with consultant, too, some time after Christmas (january, feb... not sure).
in the meantime, I'm still waiting for GP last visit to produce follow ups;
Referal to dietition (not heard yet), and referal to the cancer place here, err... the palitive care place; as they do treatments on outpatient basis for lymphomdemia err, lymphoedema (in case my oedema is due to chemo, not due to the steroids), but not heard about that yet either...

hmm... guess another App with GP might be an idea... - most my GP apps now, are just to deal with admin

Hmmm...

Considering this half-assed response, I'd still consider at least getting a second opinion in London.

yeh... I'm sort of half with you... - my main concern all along, is given, the way I react to the meds is so 'reversed' to what one should, if one has the conidtion I have... and... therefore, just on logicl thinking alone one might... I dunno... look again at that initial diagnosis.... hmm... which they ain't doing... as 'my bloods show very dangerously low levels of the hormones', but... then, if my body is so desperately in need of th ehormones, why do I wake feeling fine, to only get symptoms of low hormones, when I take the hormone meds ... - its totally downsideup.... - maybe I s h should ask GP if I can get a second opinion from a differnt hospital, whilst remining where I am; otherwise things like admin on the GH replacement and my testosterone IM injections, will get weird to say the least...

I'm hoping they're not giving you just enough to shut you up, so you don't press any more in case it mucks up what they ARE doing

I agree with Baron Grim about the second opinion.

Deb

as do I - knowing full well that might not change a thing until us Viking pirates set sails and raid this specific part of the NHS specifically

I could always threaten them with my badgers

Yes! Release the Badgers!

But do it while you're in London so you have an alibi.

really?! I was plannin g on releaseing them in front of the nurse, when I'm there for my next testosterone injection.... ahh... perhaps we're not talking of the same things

...

well. th e hospital leads me to such actions! 0 -- The Dr/consultant wouldn't listen when I tried to explain to her, How I was suddenly responding to the testosterone injections differently... in a way that indicates to me, I'm making my own again, internally.... I did try to explain how bits that had shrunk... quite notibably were growing again, but she didn't listen ... - I'm hoping they've got the message through to the nurses to measure my LH again before the testosterone injection on the 23rd, this month, so they can examine my LH at the point when, three months after the last testosteorne injection, I think it oughta have recovered from suppression via the previous injection; and I've still no indication yet my levels of testosterone have lwoered even though its so long now since the last IM injection

What is it with Drs and my - the oncologist told me she didn't care about my testicles.... unless they were enlarged ... and now endocrinology are ignoring them entirely my life seems oddly weird thesedays ,snork>

Second reply, from endocrinology, today! late on; from teh part time specialist endo nurse (who I really quite like she's competant and knowledgable, and has a good 'bedside' manner, and a sense of humour), Basically 'calming waters', to some extent; saying how she'll procede now with starting my GH replacement (she's the nurse heading my GH trial), and so forth... - sent late in the day,k I think looking at the time, just after she'd finished work in the dayunit endocrinology for the day (this is one of the three days a week she works I think) - she also deals with all the units thyroid cancer referals I think I might E-mail her back tomorrow; make a couple of extra querees, and ask a couple of questions, as she did say I could Email her now with questions.... - nice at least to have a single point of contact and an Email for her