24/7

Hi, thanks for the hugs all.  

Moomy so sorry you are in pain and hope it eases off soon, have you tried a heat pack? It is the only thing that worked on my aching knees.

Lakeslover oh how I wish I was going with you, have a wonderful time, don't overdo it though.

Grandmafox thankyou for the hugs I needed them, feeling better after catching up on sleep this morning.

Don't know what I would do without you lovely people!

Hugs hugs

Rose xx

Please have some more massive hugs from me Rose.

Harrogate is a loverly place, from what I recall, I was there back in 2001 for the British society of immunology conference, back when I was still in accademic life.

Things for me have improved somewhat in some respects, but still blighted by unresponsive and non-proactive Drs, in Endocrinology oncology cardiology and my GP practise, though seem to be getting somewhere.... - They've all been playing parce the parcel with me, and my oedema,  which I first presented with, now, to oncology, some 22 months ago.... - oncology parced me to endocrinology, who passed me back to oncology, - that went on for about a year.... - Saw a differnt Dr in oncology this time, who wrote to endocrinology in no uncertain terms; endocrinology then bounced me to cardiology, but cardiology just canceled the appointment.... - however, we had a series of two letters, one each from oncology and endocrinology, which combined, say 'someone should do something', and suggesting prescribing a diuretic.... - Neither endocrinology or oncology would do the prescribing though.... - we've now re-visited the GP, and put the two letters to them, and told them it is their respondibility .... - the prescription should be immunant before the weekend, at last....

I've just also begun dieting, to lose the 60 Lb of water retention and steroid-induced weight gain, and this afternoon is 1 of  12 sessions at a weight loss clinic... - no idea which Dr refered me to the particular clinic, which is at the hospital, but, clearly I've spent too much time at the hospital; I'm now classified as 'staff', as its a hospital staff weight loss clinic!

I've reduced my steroid dose a little further (Drs instruction), entirely stopped taking thyroid meds (Drs instruction as Ireacted so badly to them), and the growth hormone injections are helping a lot; almost feeling human now, pretty much every day, so just hoping regaining fitness, and lossing the weight and water might get me even further back to something resembling 'health'....

Its just such a battle sometimes dealing with the Drs, that I have to reach to the total limit of my strength and energy, just to get them to write a letter, take a descision etc; Its only from my requests they do things afterall; I eventually got the bone density scan, which now shows the steroids have given me ostioporosis.... The consultant was initially  not going to treat the ostioporosis; again using  every last ounce of energy, I researched NhS and UK guidelines, and eventually argued them round, and persuaded them to follow medical guidelines, and now they're going to consider treating it... err, biphosphates? something like that I think the drugs are called; I asume that will be discussed in April at my next endocrine clinic appointment....

I'll need a new hobby if I eventually get all this hospital stuff sorted!

I've already got my bath planned for tonight, after the exercise class!- lavender, chey butter, and epsom (sp?) salts!

Hope everyone is as good as can be, hugs all round to those that need or want them

Afternoon all,

Have been wanting to creep into this room and snuggle under the fleeces all day but knew if I did I'd be here all day, so waited until now!

Thanks for the shortbread Rose, just right with a cup of tea! So sorry you had a bad night and hope tonight is better for you, well done for arranging something to look forward to as well!

I've been doing bits around the house and a bit of shopping, including looking for a new iron at Curry's, only to find out they are closing for refurbishment and have limited stock, sigh...

Sorry you're having such a battle with the Doc's Mark, it can be exhausting! Hope your exercise class goes well and maybe join us here later for a hot chocolate, low fat of course!

Hugs to you all

Moira xxx

Afternoon everyone, 

I just woke up from a comfy position I managed to get into! Realised I was alone on a sofa but it's raining so much I don't suppose any of you are in the hot tub! Oh, hi Moira, I didn't see you snuggled up there, will creep out without waking you I hope. 

The faeries gave me a toasted tea cake with my coffee, bless them (they so work hard here, wish I had them at home!) 

Mark, I'm glad that at long last you're getting some response, hope you manage some weight loss.

Rose, really sorry you are having bad nights, hope something will help you. 

Love and hugs (and toasted tea cakes!) to you all xxx

Haha, Mark, that made me laugh about the staff weight loss clinic! How are they expecting your myxodema to reduce without levo or any other odema reducing meds?  I wouldn't expect too much!

Here again wide awake at 1am, maybe the hot tub will relax me.

Mark thanks for the hugs much appreciated.

Will drop in tomorrow for a chat, or today even lol.

Hugs

Rose xx

Rose;

Insomnia can be a horrible thing; I've had it for years, but its definately worse since I had cancer, and the hormone things too; not sure which or if both make the insomnia worse now.... - I don't normallly even try to go to bed until 2 AM, and often, like last night, I'll find myself downstairs again by 4 or 5 AM...  Think I got maybe two or three hours sleep last night, and I'm normallyly alright now, on just three hours a night sleep, with an occasional 6 hour sleep to settle things down if I go too long with just a couple hours a night...

Hope you can find sleep soon tonight; I'm really hoping I can tonight, as the last three nights in total I think gave me only 6 to 7 hours between them!

Always plenty of hugs::; have some more!

Mark

Hi Rose and Mark, 

I too had a bad night, think I moved wrongly around 4.30 and have had a good few hours trying to get pain levels to lower. Succeeded in getting an extra half hour of painful zzzz's. 

Sleep is such a restorative that when we lack, it's distressing and you end up tossing and turning and getting increasingly wound up by it. But if the body simply won't sleep (steroids can be a naughty for this!) then getting up and trying to relax somewhere else is often a good idea, so the imaginary hot tub may well work! 

Faeries have made some croissants and coffee, and the fire is lovely and warm, I'm sat here enjoying the morning sun pouring in through the window......

Lots of hugs to all xxx

Hi all, very quiet in here at the moment, hope you are keeping well and sleeping well?

Going to pop into the hot tub for a soak after my six monthly CT scan today, the faeries are busy fluffing the fleeces and baking honey buns...

Hugs to those who need them

Moira xxxx

Morning all,

Moira enjoy you soak and hope your results from CT scan are good. Thanks for the buns but am currently on antibiotics for my pesky cold I got before I went to York and they are playing havoc with my bowels,, three days of diaharea. Tried Imodium but still up and down with it.

Good news is that my MRI brain scan was clear last week so that's one less worry. Also my oncologist is sending me to the Freeman hospital in Newcastle to see about a trial I may get on should all else fail.

Looks like I will need to batten down the hatches tomorrow as storm Doris is going to be directly over us with 70 to 80 mile gusts. So off to get shopping today, between running to Morrison's loo LOL. 

Will buy us all some doughnuts and hot chocolate.

Take care all

Rose xxx