Hello Everybody

What a lovely bunch you are, thank you so much for the support.  I had a read of some of your profiles and am in awe of some of your stories.

the trial I hope to get on is called Peacocc, and is run by Dr K from UCL - it looks as though some of you may know her.

wishing you all a.good nights sleep x

Hi

Dr K! I freely admit to being slightly in love with her. She’s amazing. 

Xx

Well yes, Heather (Roobarb) & Daloni, I like the sound of the leaky boat. Definitely sounds better that "a sinking ship" lol! Anyway, isn't everyone dying, whether they've been told or not!! Night night! 

Good morning Roobarb, it's lovely to 'meet' you. Although as others have said, I'm sorry it has to be here, this group has been a lifeline for me and I hope you'll find the same.

I prefer 'leaky boat' to 'sinking ship' too! 

It's so hard for people to know what to say to those of us with a terminal diagnosis. The natural desire to make things better is kindly meant, but I find minimising the situation the most unhelpful. Why not just say I'm sorry you're sick, or even I don't know what to say?

I get that we are all dying, but we are not all in the same boat. Some people here are fighting for their lives along the way, dealing with difficult treatments, awful side effect and scary complications. I remember being told that having an incurable cancer diagnosis is like having a second job, and at times it's all consuming. I'm sure the same is true for anyone living with a chronic illness, I've seen the struggles of friends with Parkinson's and MS.

I've been lucky enough to have good spells of being well and stable, and hope to get back to that place for a while. At times I've panicked because I'm not making the most of every moment, training for a marathon or raising lots of money for charity!!!

Appreciating the simple things and living in the moment have really helped. Planning things to look forward to from lunch with friends to weekends away make a huge difference.

As Daloni said, doing the necessary admin and forward planning has been very comforting for me, although it's not for everyone. Trying not to waste time worrying about things I have absolutely no control over is a mind set and can be challenging at times.

I'm rambling now, but every time something has brought me to my knees, it's been the support and understanding from this group that has got me back on my feet. Best of luck xx

Dr K is the one who turned my situation around too - very grateful for her, she was fab.