August 23rd, 2011 by Stupid Rubbish

Apologies for the words about serious sh!t, again, but I kind of like venting things out like a stream of hot vomit and I’ll probably delete it later, anyway, then try to get back to the serious business of making other people laugh.

So, what’s my problem?

Simple really.

I spent most of today hugging a weeping man. I know what you are thinking, I see your concern, but I can assure you there was no bumming involved. No, these were a different type of tears and a different kind of hugs.

And not a good kind.

Let’s call the weeping man ‘B’ – because his name begins with the letter B, not because he f*cks flowers and sh!ts honey, obviously. And let’s call his lovely wife ‘Z’ because that’s the first letter of her name too. Genius.

It seems like only moments that I was at their wedding, at a beautiful venue, drinking like a fish and watching my mate walk down the aisle dressed like a f*cking comedy groom, just brilliant. A weekend of memories and utter debauchery, much of which can never be retold.

And it seems even less time since we were at school together, over twenty years ago, creating havoc and being stupid f*cking idiots, setting fire to sh!t and generally being immortal, like all young boys are.

Except, it turns out we’re not.

‘B’ is dying and there is almost nothing that can be done about it.

He’s been fighting cancer with everything he has for over a year now, with the top prize being a potentially life-extending bone marrow transplant being offered whilst the cancer is attacked with heavy duty chemotherapy.

We thought it was in remission.

It’s not.

It’s back with vengeance and it’s worse than ever, without a remission there is no way forward and unless the impossibly nasty week long sessions of chemotherapy he is having right now do something, time is short.

And what’s worse, there is a drug available in America, called SGN-35, that could save him. If he could have it that is… because the clinical trials in the UK ended the day after he was told he could have it, so now he can’t, there isn’t any, it’s not licensed or something.

Unless he buys his own from America for $200,000 of course.

f*cking incredible.

And I spent the day trying to keep positive whilst knowing what he really needed (and got) was reassurances that we would still be there for ‘Z’ and help her with things when he has gone

He’s thirty five years old and he is having to work out what he can do to make sure his wife is ‘OK’ when he dies. Whilst simultaneously trying to find a way to keep fighting through pain, misery and hopeless waves of utter hell.

He’s thirty five.

And then there are his children – two little boys aged two and four.

His absolute world and the core of the strength he has to keep fighting. And he is fighting, fighting for his children and his family because they are everything, even though he is close to falling apart…

What I would do for $200,000 right now, or the ability to take this pain away from him. I know what comes next, I’ve lived through it twice already and I’m not looking forward to it. Life hurts you then it hurts you some more.

A tip: If you ever end up with one of your oldest and dearest friends crying helplessly in your arms because he knows his children will not remember him. Don’t try and say anything – because believe me, there is NOTHING to say.

Just hug.

Tight.

August 25th, 2011 by Stupid Rubbish

f*cking hell.

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.

Anyway!

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.

Then…

Go hug someone you love.

Please.

September 7th, 2011 by Stupid Rubbish

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’: 

~~~

Hello

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.

f*ck OFF.

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.

Either way.

Thank you.

‘B’

~~~

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.

 

 

 

 

 

 

 

 

September 19th, 2011 by Stupid Rubbish

The last few days have been a proverbial sh!t-swinging hammock thruster.

Fine, so there isn’t  actually a proverb with one of those in it, but that’s not the point here, because frankly there f*cking SHOULD be a proverb with a sh!t-swinging hammock thruster in it, so give me a break.

Anyway.

Suddenly, from the bleakness of the update below this one, things have spiraled into a completely new shape.

After the first Cancer Vent, the response I got from here was incredible, utterly incredible . People were giving and  generous, kind, thoughtful and concerned. Hundreds sent good wishes to my friend, via me, hundreds more retweeted and mentioned the story we are telling, in line with ‘B’s wishes to see his story told.

In all this, only one person has come forward with negativity and unpleasantness, out of thousands who have shown warmth. I think that’s a fairly good average really, I mean you always get some dicks right?

A few amazing individuals sent cold, hard cash – with warm, soft love – including one particularly outstanding person sent a huge donation that shocked and humbled us in equal measure.

There were also other things quietly occurring in the background, as the aforementioned outstanding person not only gave a large amount of money, but also tirelessly endeavored to assist us by calling in favours and helping to arrange a meeting with the CEO and top brass of the drug manufacturing company. We couldn’t have dreamed that we would get the chance to pitch our case right at their corporate faces, but we did. Thanks to an amazing person.

This is for that person’s actual face: xxxxxx

Sadly, despite masses of effort, the position of the drugs company and the trials administrators seems to have remained staggeringly rigid. But not from want of trying, pestering and pushing.

But this is where things change.

This is the sh!t-swinging hammock thruster.

Because I got some news from ‘B’ yesterday that changes everything.

This week he has been getting tested, prodded and scanned relentlessly in an effort to see what, if any, effect the horrible desperation chemo he has been having has had on him. And despite all the terrible news from last time, it seems that the God he recently found might be listening after all.

Because this week’s tests showed NO NEW GROWTH.

Nothing.

According to ‘B’ and his support team, this is as close to “remission” as someone in his position is likely to get. And the implication is huge and terrifying…

This is the foothold where he gets to decide to risk his life to be a father and a husband again.

This break in the aggressive cancerous assault means that he has been fast-tracked onto a seven day run of the most horrendous chemo-mixtures they can find, in order to immediately follow-up with a stem-cell transplant from his sister right on the back of it, whilst the cancer is hopefully killed off.

Because of the “remission” it actually means he could get a chance at this.

It’s not a guarantee, it’s not even going to be plain sailing it itself, we need to be honest here; not only could this “not work” but this could f*cking kill him.

But this is the glimpse of hope he wanted.

This is where he will go through living hell, agony and major surgery, followed by a long and unpleasant period of complete isolation and quarantine where, if he lives through it, his ravaged body could re-grow again.

Hopefully cancer free.

This is the battle he thought he’d never get the chance to fight when the remission-inducing drugs he had been promised were pulled away from him.

I’ll draw this to a close now because I’ve got some onion in my eye. Yes, onion, you f*cking heard me. But I’ll finish it by adding the same words ‘B’ used to end his last email to me, because it makes it all seem worthwhile:

“I’ll see you on the other side of this”

“Love you buddy”

And then I’ll make it clear that we are not out of the woods, not safe, not under any illusions, but rather we are in a position where at least there actually is a road ahead now, even if  it is a terribly hard one.

This is the fight for his life.

The fight to be daddy again.