Not a great day

So….

Firstly I got my results from Prof last night – early and not entirely what I wanted to see. It's not a huge change, thank God, but I've moved up to 3.5 (from 3) on the paraprotein scale. So while it's not a number that means anything in its own right, its another notch upwards on the remission-ending and shit-restarting scale. I've no idea as yet what random number will mean the start of treatment again, nor how long it might be till that has to happen, its just depressing to see the score moving ever northwards, knowing what lies at the end of the line when it hits the as yet unknown mark.

Also very very not much helped by getting some crap news yesterday as well, awesome timing.

There's a thread I've created on my Under 50's Myeloma site, where I decided to honour the memory of those we've lost since the group was set up. A place where their names are listed and what we will miss them for:

-  Their hat-knitting-for-baldies ability (Bridget)

– Their fantastic turn of rude phrase (Amanda)

– Their willingess to impart complex myeloma knowledge in a comprehensible way (Neil)

– Their desire to make the most of remaining time by heading round China (Penny)

– Their endless hair dying (Paula)

– Their mountain climbing hopes (Sharon)

– Their unshakeable good humour (Sean)

– Their love for rugby (Steve)

– Their passion for nature ('Outdoor' Paul) 

And others who have died over the last 4 years. It's way too long a list – and all these people are under 50, with lives they loved – just like me.

So when the thread comes on email-  'new message on Rest In Peace, posted by X' – you have to take a breath. As you wonder which of the people you've met or know on email, it is.

And yesterday it was a massive kick in the teeth – the person was Pam Buchanan. One of the original members of our little gang, when I first kicked this off, who we met at one of the annual Myeloma Infodays. And whose husband H got chummy with, as they were in the same boat of having a wife up shit creek. H also went to stay with them several times as they live in Belfast where he used to do some work, so knew Trevor and their two young kids, Beth & Sam.

Pam was SO desperate to stay alive to see them grow up. It ripped her to pieces knowing her disease was progressing faster than many – endless plasmacytomas, bone breaks, treatment paths etc. and yesterday it all came to an end – she'd left hospital 2 weeks ago, to go home to die. Just utterly fucking shit…

Sorry this isn't a cheery post but it brings it back to you – well, actually comes and smacks you in the face, hard – when you hear news like this. Becuase it's a total bloody lottery as to which of us it will happen to next. One of the people above died after their Stem Cell Transplant – the only one of us that this happened to, but what a major consequence. It's a risk that you think won't happen to you – but it did happen to him.

Makes me question and wonder about all the choices I'm making – to do Brand Mojo, to travel, exactly how I spend my time, if any of the choices I'm making are the wrong ones, how long the sun may still shine for, if there's anything at all I can do to influence the path that lies ahead for me…. Not sure there are any brilliant answers though, apart from to keep on keeping on. And be bloody grateful that for now, I can.

So here's a huge outpouring of love to Pam and her family, shredded by this bastard thing that is Myeloma.

We've been tremendously lucky so far – it's a massive understatement when you put this in the context of the Rest In Peace thread – so I am counting my blessings as well as feeling terrified again.

Fingers crossed hey? There's not much else Hawksey and I can do x x