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

First, off tomorrow, with W, for two days, back Monday just finished the majority of packing, asides final few things like razor toothbrushes etc; half the bag is full of drugs, needles, more drugs, spare eyedrops, extra eye drops, and all sundrys associated there with

- mind, the growth hormone won't go in until the morning just before we go, with the ice packs out of the freezer then, at the last minute, so it'll work to keep the med at 2 - 8 C, for the longest possible time. And, of course the GH itself stays in the fridge until just before we go too.


hospital today was good.

The Drs seem frightened of me now; several times she questioned if I thought they were doing enough, and simularly worded things; our letter to them has done so much good, and they're extra careful now with me, but, mainly, they listen

I'm going to continue not* taking the levothyroxin, and they'll do bloods over the next few months, see how my results go, and how I'm feeling, with the not taking it, and, then, if we decide too, and deem it necessary, we'll trial the T3 only med.

'Im Reducing my prednisolone steroid from 5 MG a day, to 4 MG a day; 3 AM, as normal, but only 1 MG PM.

The ostioporosis now age-adjusted, isn't actually ostioporosis, its ostiopenia (sp?) so not so bad as first thought; they'll re-scan bones, in two years, and as it stands, don't think any meds to treat the thinning bones, asides the vitamines and calcium I already take, is needed.

The cardiac scan was basically OK, but shows an enlarged aorta. Not sure how serious, or bad, and I've already got the cardiac app to go in and discuss that, in May.

Latest word on the oedema.... Oncology said it was endocrine resonsibility as far as they were concerned, and now endocrinology thinks I need to do the cardiology app first, and see waht they say which does really kinda make sense, I guess.... - lowering the prednisolone may potentially make a differnce which could affect the oedema, I guess, but I think the concern is that somethign else is causing the oedema; oncology say not oncological, endocrine cause is possible, but looking less likely as I'm on low dose of the steroids, and so, I guess cardiological could be a cause- The chemotherapy I had can be harsh on the heart, although I didn't have a particularly high dose of the chemo drug that does the heart dammage, as I only had 4, not 6 cycles; radiotherapy missed my heart, so it can't be that, - I guess the adrenal crisis in May last year could have done some dammage, and, of course, it could be that 'lifestyle' may have done some dammage to it over time...

Going to go to the gym next week, have a look round, and if it seems good, I'll probably join and aim for 3 sessions a week to start, and slowely work up and regain some fitness, as now I've stopped the thyroid meds, I've enough energy to think about tempting that; and hopefully start the process of losing the 60 Lb the steroids (and oedema?) have made me put on so far. - I'm now as of today on Drs orders to drink less - alcohol can worsten bone density so that is sensible also, plus of course it'll lower my calories; hope to replace soem nights at the pub, with nights at the gym instead which just seems... so* wrong



Right, I was up at 6.15 this morning, getting tired now; mind, didn't get into bed until 1.30 in the morning and I've been out and to the hospital, and had bloods taken (measuring free T3, T4, TSH, sodium, potassium, testosterone, and probably other general blood work too)

Think I may need a nap soon...

Looks like risotto for dinner, and salad to go with that, - just using up what needs to get used before we go away, looks like for breakfast....

Hopeing the visit to the dietition next week will be useful too, err, think that is next week, in sorting out a better diet to accompany my pathologies; in terms of the hormone stuff, I think I should be avoiding carbs like the plague; as the steroids screw-up insulin, at least 25% of people on long term steroids develop insulin resistance, metabolic syndrome, and diabetes, so reallly desperately want to avoid that one as well - plus trying to control the steroid weight gain, reduce cholesterole (mine is through the roof, which is common for people with GH defeciency),- so hope the nutritionist/dietition can help with that maybe ... - I'm eating about 1/3 of waht I was eating in 2014 and 2015, but even so am still gaining weight... exercise and diet will help though, and potentially help a lot of other things, like the ostioporosis, risk of diabetes, heart disease risck etc (the increased mortality in panhypopit is mainly due to heart disease; especially when GH isn't being replaced; OK, so I'm replacing the GH, but still need to try counter long term stuff like that, as soon as possible. )

Oh, and its really nice having feeling back in my legs and feet, now I've stopped taking the levothyroxin, makes walking so much easier

oo. heck... not even deecided what shoes to where whilst away... - I'm not really wearing any female clothes whilst away, its gone a bit wintery anyhow, so jeans, and some blouses and tee shirts seems the easiest, which makes packing a lot easier

I love this journal entry It's so positive, with big glimmers of the old 2legs

Have a lovely time away.

Deb

The trip away was great got to meet a few old friends from primary school, middle school and high school, includin g the drummer I used to go out and get with and play guitar to his drumming.... - the drummer ex of the darkness who was DJing at the frien'ds 40th party did some loverly walks round places I've been going too since I was a child, and where William and I have been visiting since we were first together, to the cloisters of the cathedrial, and the riverside walks, and the pubs we've known now for many years, and on the Sunday night caught up with a friend I had lost touch with since 2014, who was a good friend of Chris, the guy I was seeing who lived there, for about ten years, and who died of cancer, just before I got diagnoised with cancer so was really good to catch up with him, and relay all my recent medical nonsense, - and weirdly turns out he's now got thyroid problems too, only he can* tollerate the levothyroxin

Got relatively drunk both nights, but nothing too OTT, that prevented me from doing stuff the next days felt just so oddly normal; and actually was noticable how much more 'well' or better, I am now, compaired to the last trip, which was in summer 2015, just btween chemo and radiotherapy, when I was so unwell whilst there (due mainly to being on Hydrocortisone then I think), - the new lower dose of prednisolone seems to be fine just hope that can aid me in losing weight and regaining back some bone density and muscle strength, when I join the gym soon. Maybe I should take up a sport, as well as the gym, perhaps mixed martial arts would be the most logiccal really stupid idea

Pretty exausted by the time we got back to day, but even so, managed a quick pint in our regular pub, which we have to walk past to get home from the station