24/7

That's fantastic news,you must all be so thrilled

xx

So pleased Moomy, for you and your daughter.  

Jasmin xxx

That is so good to hear Helen. I can only begin to imagine how hard it has been for all of you. Realistically we all know you will never stop worrying about her but we all worry about our offspringxxx

peace health and love xxxxx

Good news Indeed

This room seems to be deserted.....hope regular visitors are doing ok? 

Maybe I need to explain it for anyone looking in? It's all imaginary, but....

It's calm, peaceful, lots of comfy chairs and sofas, fleeces for you if you wish to feel snuggled up, a mini kitchen that is always well stocked, and we can bring extra at any time of maybe cakes, biscuits, drinks (nobody ever needs to diet as everything is, again, imaginary) .....there is a wood burning stove for chilly times, but the glass bifold doors open up on warm days so that you can enjoy the scents from the beautiful garden beyond.

All the work is done by faeries! 

Hugs to all xxx

Hello Moomy, I still pop in from time to time but there is noone to chat to. I hope that means that everyone is busy and well.

I am doing well but the oncologists won't give mevherceptin because of my docky ticker. I cannot work out whether I really nead herceptin or not. I just want someone to make a decision yes or no

In the meantime we are off on a River cruise from Frankfurt to Passau in a couple of weeks. There is dialysis on board so no worries about that. 

I hope everyone here is enjoyong the summer, such that it is

Hi, Moomy, Gillian, all,

Gillian- goodluck trying to get them to make a descision.... I sometimes feel they like to not chose either way when they can, as it can protect them from claims of doing wrong, depending on what then happens, by either route of saying a definitive 'yes' or 'no'.... hope its for the best whichever way they eventually go!

I'm just too tired most of the time to post much online, and too wired to sleep, which I guess doesn't help the tiredness. continueing checkups and clinic appointments keeping me busy, and soon learning a new skill, of self injecting subcutainious growth hormone, which isn't probably as much fun as it sounds, but first oncology, then endocrinology, then my GP have slowed this process down as much as they can, so I shoudl have started it months back, but now waiting for an endocrine nurse to return from her holiday, before she can write to the drug company and get things moving...

Not been coping too well here, with the summer; hot weather and humid, and I never used to like the heat much, even when younger and healthy, now, with constant hot flushes from testosterone highs and lows, its even less bearable! - on the positive I did nearly have to be hospitalised a few days back, picking up a random tiny infection, that nearly threw me back into adrenal crisis... but I managed to dose up quickly enough on the steroids, and  avoiding bringing them up, managed to stave off a A&E emergency trip; I consulted with the endocrine nurses over the phone, to ensure I was doing it right, and seems I've kinda got the hang of up-dosing and suchlike now; now  on a slow descent from the high steroid dose, back down to something a little more manageable... - yesterday with calcium and vit D tablets plus hormone meds, I took 16 tablets I think! - bearly needed to add food to that lot!

Still managing to feel better later in the day though, in general, so tend to be most productive and get stuff done, later in the day...

We've got a company coming round, next week I think it is, to give the first quote for having the bathroom re-done. doing up the house is slower than I'd hoped, but between hospital visits and just being so ill, its hard to find the energy to even think about things. if we can get the bathroom done this year, and maybe finish the rest of upstairs with painting etc, then we have done the upstairs totally, and next year can turn to getting the utility room and kitchen done, and then on to finishing off flooring, internal doors throughout, new front door, and sort out the bottom hallway etc!- we'll be ready to start it all over again by the time its done!

Hope everyone else is OK

Morning folks,just running through on my way to work,will catch up later when i get home

Love you all xx

Hi everyone, 

Gillian, your holiday sounds ideal! As for getting a decision about Herceptin, argh, could there be a different drug that would help instead? 

Mark, you wear me out with all that decorating, and make me think we should start round again, refreshing the colours we have already, which we like a lot, but it was a good few years back.....

Carol, I bet those cats are still keeping you on your toes, I will be having the dog for a couple of weeks next month, that will wear me out! 

Have left some fresh croissants......and coffee is on, plus kettle is hot.....

Hugs to all 

Hello everyone,

Just sneaking in to warm up, and have some coffee and chocolate. Plenty left for anyone else who is passing through.

I'll be in the comfy chair in the corner if anyone wants a chat.