Post Results

Know what you mean - poor sleep can really knock you for six. Good luck for the test on Friday. Rainie x

Hi Little-fi, I hope once you can get off the steroids, your sleeping pattern will be a lot better, they make you feel so awake but you have to come off them slowly so try to be patient. Good luck on Friday, I hope they don't find anything and the palpitations can be put down to the steroids.

Rainie, I do hope you enjoy your rest this weekend and enjoy getting out all your art stuff on Monday!

Sorry you had a bad day. I have problems with breathlessness which can be frightening. Rest when you can and be grateful for the good days.
i am still hoping there is a treatment for me xxx 

Hi Annette and Ruth, thanks for your kind words. It's frustrating more than anything as I seem to be making progress one minute, have a burst of energy and then pay for it the next day. I'm supposed to be returning to work a week tomorrow but at this rate I don't think I could manage. I was expecting the pneumonitis to have gone by now but I'm a slow healer. Hopefully another week will make all the difference.

Ruth, I really hope there's another treatment out there for you! xx

Thank you I am trying to get my oncologist to let me have a new drug that works against my mutation x

Hi Little-fi, To be honest, I wouldn't hurry to get back to work until you know you are fit for it. As long as you have days where you are too tired after doing things the day before then, I would say you are not yet ready. We have to learn to pace ourselves and not get into the cycle of doing lots on one day because we feel better then zonk the day after because we've done too much. I think we all do it but it is difficult to change!

Ruth, I would be asking another oncologist to try to get this new drug for you but I'm hoping this won't be necessary because like me, you have had the same oncologist for quite a while. I know mine fought tooth and nail to get me the trial drug after I failed the screening for the trial. I'm hoping yours will pull out all the stops to get this for you! I have everything crossed!

So it was 4 weekly call day today,

Blood levels all good

3 Monthly scan results show no changes at all

I AM IN THE STABLE MABEL CLUB STILL,

sorry to shout but I’ve been feeling a bit low recently and I think I may have sort of convinced myself that I wasn’t getting my membership renewed this time but I have so I’m happy as a pig in sh*t and crying my eyes out lol.  

Congratulations I am pleased for you xx

That’s great to hear, amazing , xx 

Richard you shout it out as loud as you like, and so you should! Brilliant news, so happy for you, go shout it from the roof tops xx