If you don’t know the story here, then scroll down and read “Original Vent” from the bottom up, you’ll soon understand…
So things haven’t really moved on as much as we would have liked. And that is despite some phenomenal responses through here, through Twitter and through other channels that really reminded me that the world CAN be a good place sometimes and that people can be incredible.
I am going to be putting up a more detailed update soon, talking about the incredible efforts that some people have gone to in order to try and help.
In the meantime, two things HAVE changed. One is that my friend ‘B’ has written a long response that he has asked me to put here for you all to read. And the other is that in the face of a lot of people offering to gift money / start fundraising / he’s agreed to change his mind on that front and accept what a few people have thrust towards him… Here is my friend ‘B’:
I’m ‘B’ from the ‘Original Vent’ below .
It heartened me greatly that so many people wanted to do something to help me after my plight was carved into electronic archaeology by Cyril, last month.
I’ll be honest, the last 18 months have not been fun at all, I’ve just undergone my 17th round of chemotherapy.
Yes that’s 17…
I have the ‘most curable cancer’ , ‘the good one’ , they say. Well the next person who says that to me gets the first prize of a punch in the face. Or if it happens in a cafe , they may get brunch in the face instead… Their choice.
In my case I’m simply not the most curable, in fact with each chemotherapy I get less likely to be cured.
I have refractory Hogkins and there are many of us out there in the world with this element of the disease and we are all crying out for a cure. I’m now in the worse case 1% of this illness and I’m very likely to die because of it.
The statistics are stacked right up against me – what am I left with ?
Well there’s always the general, underlying feeling that life itself has deserted me and I’m now on the outside looking in.
Or what about the feeling of ‘what the hell did I do in my life that deserved this’ ?
And then there’s the massive, heavy guilt I feel for marrying ‘Z’ and putting her through this pain and my eventual death ?
Then I suppose theres the even deeper guilt of having brought two of the most beautiful boys into the world only to leave them without a dad soon ?
The feeling of guilt and despair mounts up and I’m left with a choice of whether to cut my chest line and bleed out quickly, or to push on for the sake of my family or for the sake of some glimmer of hope.
Apart from that one split second of ignorance upon waking each morning, where I think that everything is fine, I think about cancer 24/7 . I cherish that split second each morning until the shadow of death puts the reality back almost instantly.
On the plus side;
> I’ve some bloody good and supportive life long friends.
> I’ve got a supportive family trying to keep things normal.
>I have a soul mate in my wife who, without, I would given up long ago.
>My sons (2 & 4) who won’t remember me after I’ve gone. My world.
>I have a God now (a new experience for me).
> I have a team of doctors trying to fix me (?)
>I’m still alive … although I struggle with this one as I often wonder “am I ” ? Every beating this chemotherapy gives me sends me into an abyss which I have to slowly crawl back out of to face being thrown in again . There’s a finite amount of times anyone can put up with this.
Oh yes and then the best – always save the best until last…
I’ve got a worldwide, redtape-oozing, pharmaceutical and clinical system within which is not only my possible cure but also that of many, many others .
Unfortunately due to it’s unique design it’s likely, actually very likely, that many people who could have been cured of many diseases ( not just cancer) have died or are dying as we speak waiting for someone to dot an ‘i’ or cross a ‘t’.
I get particularly frustrated when things that remind me of my story happen.
Just to clarify the madness, this is how it works:
Company X comes up with a new drug – then it passes the drug through phase 1 and 2 clinical trials in America where company X is located. Then during phase 3 trials, company X is so confident of it’s product that it gives stock to virtually every European union country in the world to use under guidance, for trials.
It gives this for free.
The UK’s NHS can use this drug under these terms (only) and it can be supplied via a non-US middle man who establishes a named patient programme in these countries for patients needing access to this drug.
With me so far ???
Ok now the bizarre part, or the bit that f*cks me right off:
Company X has been trying to get the FDA (Food and Drug Administration) in the US to give the final blessing for the drug and say that the trials were good enough and authorise the sale of this drug in the US. They have been effectively tapping their feet waiting for this as the trials are happening worldwide.
Third week in august and the FDA goes ahead and approves the drug.
My hospital now tell me they can’t buy that drug because it’s not approved here in the UK by NICE (National Institute for Health and Clinical Excellence) or the European Union’s equivilent EMA.
What they are saying is that it’s OK to use on trial here to sort out its American approval using non-American patients but it’s not OK when approved for THEM, to help those people left behind needing this drug, because they aren’t on US soil and aren’t paying in US dollars.
So, despite the fact that the new drugs cancer budget for my area is currently three quarters underspent… it’s gone.
If that didn’t piss me off enough, in preparation for the forthcoming approval by the FDA, company X must have known it would get it and pulled the plug on the named patient programme on 1st of August without any thought for those awaiting the drug through these trials.
My application went in on the 2nd week of August.
No named programme exists now and it feels like it’s time for the drugs companies to instantly pull out to go make pots of money in the home market and walk away from all the guinea pigs left in the foreign markets.
So all in all, the clinical and pharmaceutical area of this planet have failed me immensely.
Of course, I may not even respond to this drug - but I would have liked the f*ckING chance to see.
Yesterday pissed me off immensely, because a fellow Facebook group member and refractory Hodgkins sufferer died.
Whilst I didn’t know this person I felt every inch of her pain and fear over the web.
The month before pissed me off more than ever as another fellow sufferer of this f*cking cancer died in Hawaii, but this was more painful for me because again whilst I did not know him, I felt his plight and also the fact he was just a little older than my eldest son when he died made my grief unbearable.
These people are dropping dead in a not very peaceful way.
Everyday with cancer is like a slow motion car crash with your entire family exposed. Cancer allows you to feel everyone’s grief before you die.
This agony, whilst corporations rack up increasing revenues on drugs and politicians bluster over disaffected youth.
Now I haven’t wanted a ‘ just giving’ page or anything like that, but I have let Cyril twist my arm and therefore apart from re-tweeting Cyril’s blog to everyone you know and those that you don’t then If you wish to donate anything I think he is going to sort something out.
And back to Cyril…I’ve posted this up because even through all the pain and suffering, my friend was so touched and so pleased to see responses and well wishes, he sat and poured that out. Straight from the horse’s mouth.
Aside from a second chance to be a father to his beautiful children and a husband to his beautiful wife, he wants to make something, somewhere, CHANGE so that others don’t need to feel as agonisingly left outside the system as he does.
We’ll keep up-dating.