Sorry to be so rude but I just couldn’t think of another way to adequately react to the masses of messages, responses, emails, etc that I have had since writing the blog post below this one.
Well, I could think of some other ways but I really like swearing.
I want to thank some amazing people for being literally amazing, brilliant, supportive, lovely, thoughtful and altogether outstanding. I can’t express how amazing it feels to have friends and strangers alike, reach out of the Internet ether and offer genuine warmth and concern without condition or motive.
Also, I have had some very good advice and some glimmers of hope.
It’s hard to pick out individual people from so many, so I won’t name any names… however… If you are a strong, potent, fiercely smart business woman with a house near me, or a genuine, hilarious, warm showbiz-type with an iPhone, or a lovely, thoughtful, Scottish genius then you have been incredible.
Equally, if you are a Twitter chum who means the world to me, who has messaged me and checked up on me – you are an ADORABLE GEM. And if you are a beautiful, thoughtful, quietly supportive baby monkey, you have made me feel utterly amazing and privileged that I have you on my side.
All of you: thank you.
So what does today bring?
Well, a few things…
I spoke to ‘B’ for a good length of time this morning on the telephone, we were very frank and honest and we talked about all this fuss I have caused. He is really clear where he stands on a few things too;
He doesn’t want to raise funds or pursue anything like a “collection” at this point. For various personal and individual reasons it’s just not what he wants to do right now and as hard as I find that, we all must respect it. So we will.
He has clarified for me again to the best of HIS knowledge the situation with the drugs, the trials and the way in which the trial period was ended and how it left him feeling that the rug was pulled from under him.
We don’t know if this is normal, correct, or usual practice – and we are certainly not making any accusation or claiming that anything has been done wrongly because it’s simply not clear to us and we are not qualified to say, we are only qualified to react from the heart.
But I can confirm that ‘B’ was under the impression that this drug WAS going to be an option for him, but then, suddenly, it was not.
It appears that the people who told him it was definitely an option were not actually in a position to do so. They did not have a full understanding of when and how the drug company would end the free trials period in favour of taking the product out into the marketplace and getting it on sale.
But we both still agree that this kind of thing REALLY HURTS PEOPLE.
Nobody should me made to feel, when facing a potentially terminal condition, that a glimmer of hope can be offered to them, then removed in a way that simply adds agony to agony and causes nothing but grief and lost hope.
Normal, abnormal, right or wrong: It’s awful. It hurts. It’s unfair.
So what DO we want?
‘B’ wants to offer warm thanks and a careful hug for all the lovely thoughts that have been sent to him through me. And I want to repeat my thanks above to all those amazing people who care.
In addition, I want to ask people not to let this story go quiet.
Not because we are gunning for anyone, not at all, just because ‘B’ wants to shine a spotlight onto this grey area where people end up left in the shadows, with only pain and fear, when there might actually be a better way to do this.
We make no accusation against any organisation or any individual. These words are my thoughts and my interpretations of something that blackens my mind with grief and unhappiness. Maybe I am biased, maybe I am wrong, I just feel helpless and lost inside a dark stormy void.
If anything here is untrue, unfair or improper I would welcome and request a viewpoint from anyone in an informed or properly connected position, or indeed I would happily just delete, amend or alter any of these words on request.
This isn’t about being a mindless campaign.
It’s about awareness, unhappiness and the thoughts of two old friends regretfully facing mortality and working out what it means to say goodbye.
If you want to help – read the piece below and then tell your folowers about it on Twitter, RT it and ask that they do the same, just in case something can change for the better.
Go hug someone you love.