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Hobbitlife
2legs - Hey, babe, take a walk on the wild side... Started conversation Aug 6, 2015
Asides like turning from male to female, I also appear to have turned into a hobbit.
oh, so so so so tempting to just stop writing having said that... and... leave any remaining audience for my nonsense, in a state of eilling suspension of disbelief... or something.
Well, the male to female bit we already know; I've no testosterone left in my body I really oughta start taking this being ill thing serious one day... pah
anyhow.
the hobbit thing.
fatigue. but only sleeping with my sleeping meds
and time... and not even concentration enough to read
Additionally, most of the meds I'm on, which relaly ain't that many, go best withfood; asides anything the hydrocortisone, the only real med, as such, messes about something horrid with insulin and blood sugar... and that's just horrible
so.
lots of time.... meds that need food...
endless cups of tea. - I'm such a addict now today, oddly was spent mainly drinking Indian blended tea, though I switched to camomile about half a dozen cups back; not had any ginger and honey, ginger and lemon, peppermint, Jasmine, etc., at all today
so. lots of cups of tea. and lots of meals... - spacing the food out is the key I think; main problem at the omment, is that I really do have to lose weight, having put on so much during chemo - trying to disect meals down, from two a day, three tops, to breakfast (with first hydrocortisone).
Lunch (not long after, and with half dose hydrocortisone).
Then, not long after, but way too early for dinner, is mid-afternoon tea (seoncd half dose hydrocortisone).
Then, of course is dinner.
thanks to insomnia, I'm then always hungry anyhow, long before bed; but, at least that ties in nicely now, wiht taking the melatonin for the non-24, useually about middnight to 1.30 AM with supper (two hours befor ebed).
luckily, the temazepam doesn't require food with it -
then of course.
Everything is messed up each day, by waking so damn late, and so the first dose, ends up being about 10.40 o 11, with 'breakfast', and ten I'm ment to ahve the seoncd, half dose hydrocortisone, at 1... which seems awefully close by... so that gets put back a bit.... then the 4 PM one ends up being close to the 1 PM one, so the 4 Pm gets put back a bit...
I guess my just moving everythign back, to fit in with my non-normative sleep patutrn,is the right thing.; when I questioned the endo specialist nurse, she just... refused to answer my questions
Spent all day wonderfully blissed out of it. so so zen -= mainly, of course due to the affects of the temazipam - I'm gona need something stronger than cafine, for an upper in the morning, if I ever work again; I wasn't truely thinking well enough to do much really, until maybe... dunno... 5 or 6 Pm
having said which... I did get the E-mail sent off and written, to Patient leiason by ... err... dunno can't remember, about 2 PM I think
One of the big advantages of the chemo, is sadly now gone - gotta shave my legs again now - and, TBH, there really isn't anything quite so amazing as chemo smoooth skin seriously...
Wasted an hour or so earlier, as I was spaced out and so zen and blissy already, just meditating... that was nice
I think tomorrow I'll wear the death mask and meditate in that. just... becuase I can...
hmm....
Spke to Brother on phone, and he asked me for my opinion of cancer, - I tol him I didn't think it was worth the effort, and he oughta avoid it, if he could... he was someewher e between Manchester and East Anglia, back from another trip away with work... he's such a high flyer thesedays, excetutive car, company credit card... torry
Had stir fry again tonight, for dinner; utterly back up to speed using chop sticks, despite neuropathy if not. . . oddly... better than I have been in years
oo. camomile tea must be brewed now
Hobbitlife
coelacanth Posted Aug 7, 2015
Do you have massive hairy feet?
(I read all your updates, just don't comment much, but you know I'm reading. If there was a bit less I might even show my almost 80 year old AML mum, who was told she wouldn't get to 78.)
Hobbitlife
2legs - Hey, babe, take a walk on the wild side... Posted Aug 7, 2015
I didn't realise there was much of the in my journal entrys, the past ... six months there's certianly been prescious little of it in RL sadly... for which I can most definately blame my being ill Mind, what with my virtually zero testosterone ATM, its not like... well... hmm... so glad I just find this sort of stuff funny... I can't be doing with taking much serious anymore
oo.
got a phonecall from pals. very confused by what they said; they I think mis-used some terminoogy; radiotherapy, oncology, hematology are, kinda differnt things, but seems I have, or may have an appointment in september, with the proper Dr, from oncology hematology, as a follow up; an dhe can follow up the chemo stuff, and not just a radiotherapy follow up (who told me, poit blank, he didn't want to hear anythign about my chemo side affects), though, of course, I've not had any letters through about either appointment.
communication is not their strong point
Quite why, given they know this, they can't at the start of treatment, give patients a overall 'agenda' for treatment and follow up care, so one knows what to expect, and when, is ... beyond me - E.G., turns out all my joint and muscle pain, during five or so motnhs of chemo, was avoidable. - they forgot to give me thedrugs, thanks.
simularly, I'm fairly sure there was a missed chemo/oncology/hematology follow up, after my final chemo; instead I went staright into radiotherapy and saw the radiology consultant Dr, who said he didn't do chemo stuff...
hopefully Pals can sort something out; I asked for the letters to be resent, if they've not been already, and they're going to contact hematolgoy/oncology for me, as I've no contacts there anymore since they dumped me, post-chemo
Throat nearly better, from teh radiation now, and armpit if anything hurting more... not sure, but maybe unrelated stuff going on there, too, on top of the radiation dammaged skin
Trying to skip a meal or two today, and train my body to take the drugs, without food, as I must try start loosing weight soon, or I'll get well too accustumed to this over-eating regieme, to feed the meds
bussynig myself...
coffee. medication.
meditation. tea.
stripped the bed, put bedding into wash, and turned the matress, to loud loud D&B
now to do a job application, I think, if I can concentrate
Later... gona finish doing some recording
must try think ahead, see what I can construct for dinner, otu of the various bits left in the fridge.... probably noodles again, but think I'm out of chicken, so perhas, maybe........ salmon....
Hobbitlife
coelacanth Posted Aug 7, 2015
Mum likes to book an hour at the library once a week, to "look at the pages on google". She also thinks that I have somehow stored all of said "pages on google" inside my phone and has more than once asked how they all fit, when the library computers are so big. I once tried to explain that the internet is made of cats (cats cats cats) but she was very confused, so I don't think she can be let loose on your journal! In fact we're glad she has only sporadic internet access, if she had it at home she'd be looking at the pages on google about the drugs she's on and scare herself silly.
Al I can suggest about hospitals is to get yourself dealt with by one that has gone in special measures because of their poor communication with cancer patients and "data inaccuracies" with regards to cancer treatment targets. They bend over backwards to get things right. We can't fault them - mum's treated like royalty when she goes, the consultant and his team are meticulous in their explanations, and every letter, phone call or appointment is exactly right, never missed or confusing.
Mind you, even after almost 2 years they remain in special measures.
Hobbitlife
You can call me TC Posted Aug 7, 2015
I'll bet I'm not the only one looking forward to the book version of 2legs journals since his diagnosis. They should be printed unadulterated. And I'm sure your Mum could cope with it Coelecanth.
Hobbitlife
2legs - Hey, babe, take a walk on the wild side... Posted Aug 7, 2015
My hospitals ment to be a centr eof excellence... I didn't think they were so excellent the time they gave me my chemo drugs, with no pre meds, anti-nausea, etc., after I'd been waiting, oo, about 7 or 8 hours I think... 0 - mind.
I get to be all 'hardcore' about it; I still didn't feel wildly sick, and still wasn't sick I truely must have cast iron stomach - as I explained to one of th enurses, all their cytotoxic drugs, might be poisens, and really nasty; but, TBH, they're small fry to the illegal drugs I took volentarily for many years
have my journals over the past... however long it is been that* ... something? - I don't recall most of the last... however long it is... my memory is shockingly wrecked. I can't remember anywhthing much anymore TBH esp short/medium term, long term seems fine ish
making the bed, and stuff utterly wrecked me so then I swept the bedroom, badly - so I'll have to do it again; as my spatioal awareness has gone to pieces, I guess I'm missing big chucnks of the floor I'm tryign to sweep, in a way I never used too damnit... having hot flushes and sutff whilst doing it can't be helping though so need a shower, but still waiting for the bedding that went into wash to dry... at least ht bed is mad eup with clean bedding... took me ages to figure out the matress protector... - I think spatial awareness problems cover to that sort of thing too... - sort of holding something and tryign to figur eout one end from the other, etc... - I find stupidly loud music helps, as I can yell abuse at my hands... and swear loudly. still no idea what's for dinner, I better cook it soon I guess, or I'll forget and get distracted again err... yeh. food first, then ... shower...
may have accidnetially taken my last hydrocortisone dose twice, I just couldn't recall if I'd already taken it... but, maybe I didn't...
Hobbitlife
2legs - Hey, babe, take a walk on the wild side... Posted Aug 8, 2015
supper tonight.... two crumpets, toasted, with brie, so ripe This next bit, may contain a TMI although... I'm not sure TMI really exists....
oops.
trust... me...
you know you get two types of blisters... the ones with clear, lymph fluid, and the ones with blood in... well... I'm fairly certain it is the former... and I'm quite positive how... I accidentially caused it. on, of course, of all places.... my nipple just... so... hard resisting temptation to get a pin out and burst the I guess.... it may have been a bit soon to try get the suction cups out... for the first time since.... a long long while ago I'm gona take some...... time to get up too.... 'opperational strength' me thinks no fair!
The crumpets were nice though. and slightly insufficient; I scoffed a porkpie too, to make sure, before I took my melatonin.... only temazepam left to go, and that thankfully doesn't need to be with food; it kicks in damn fast; and by the time I've taken it, its useually.... a fair giggle trying to coordinate myself sufficiently to turn off the phone, plug it in to charge, shut down the PC, turn off the IPod, throw that on to charge, and suchlike
beds all nice, now its made up and fresh and clean and with the matress turned, and I also switched over one pair of down pillows, to a differnt pair of duck down pillows, which I think are slightly better... - failing all else, I'll bring the other pair back in, then there'll be six pairs of down pillows on the bed... - hmm.... if there's room amongst the teddys; I must bring the teddys back in!; they were exiled to the spare room earlier, whilst I stripped, then made up the bed, etc... - they're all sitting on me!; well, on my deathmask, which is currently lurking in the spare room on the bed gotta have my teddys in bed with me... I'm not sure I can sleep without bee clutched in my arms .... - even if it gets a bit of a squeeze, in the bed, when W's here too... - I useually end up in the middle, bee clutched across my chest - William has to look after ladybird... - he did have frog too, but kept saying frog terrified him, hewoke in the night... and frogs eyes were there, looking at him...
Unicorn is currently sitting ontop of the left celestion speaker, wearing her bondage collar.... three of my teddys have bondage collars now of various types
I meditated earlier, again, whilst sitting on the sofa... never... really something I'd have imagined I not only got into... but, seem to sort of need.... must have worked well; lodger apparently talked to me/asked me something, and I was utterly unaware until I removed my headphones (on the ear ones so can normally hear ambient room noises even when wearing them... mind, meditating in the radiation machine was the bestist I must start meditating in my deathmask from time to time ...
Hmm. yeh. thought I still had some weird left to find.
still can't decide where I should take William for a holiday, some time befor e Christmas.... some where in Europe I think, and flyable from Cambridge airport I think, for convenience.... maybe somewhere.... suitably weird... dunno where though
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Hobbitlife
- 1: 2legs - Hey, babe, take a walk on the wild side... (Aug 6, 2015)
- 2: coelacanth (Aug 7, 2015)
- 3: Pierre de la Mer ~ sometimes slightly worried but never panicking ~ (Aug 7, 2015)
- 4: 2legs - Hey, babe, take a walk on the wild side... (Aug 7, 2015)
- 5: coelacanth (Aug 7, 2015)
- 6: You can call me TC (Aug 7, 2015)
- 7: 2legs - Hey, babe, take a walk on the wild side... (Aug 7, 2015)
- 8: 2legs - Hey, babe, take a walk on the wild side... (Aug 8, 2015)
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