As some of you have gathered by now, the Leiomyosarcoma cancer, or Leo as I call it, has returned. Bugger, Damn, Shit and Blast, from the woman who swore she would never swear on her blog, is all I can say.
I still look in the mirror and see the same woman I saw three weeks ago; suntanned, fit and healthy. I still feel like the same woman.
However, I have spent the past two and a half weeks undergoing endless tests; being ‘counselled’ in how to accept the inevitability of accepting ‘palliative care’ and the arrangements that will be put in place for me, or – possibly – undergoing one last test that might, just might, lead to the surgeon deciding he can do something that might give me another year or so – if I survive the procedure…
I felt like writing this morning. Putting down on paper what it actually feels like. Nothing like the adverts for cancer research, I promise you. Willing hands picking you up off the floor; a bit of chemotherapy, probably throw up a few times, and then – there you are, smiling for the cameras and pleading for £2 a week, so that others can follow the same painless path. It ain’t like that at all.
They don’t tell you of the decisions you have to make. Decisions that no one can make for you. Decisions that you actually can’t make for yourself. But you have to. People are waiting to see what you want to do, and if you say nothing, you won’t get either choice.
So, ‘palliative care’, with a gentle managed decline over a couple of months in that dignified French way, a million miles away from the brutality of the Liverpool Pathway; my own wonderful Doctor calling in daily – absolutely never, ever, any pain or suffering, for the French are positively paranoid at the idea of anyone suffering. Time to spend with Mr G, watching the Doves – who did nest in the Cotinus tree after all, in the tiniest nest you ever saw – feeding the baby they produced. Watching the bief tumbling over the Mill stream, listening to the rhythm of French life – for maybe a month or two.
Or maybe the surgeon will phone on Monday when he has seen the latest scan, as he promised – and offer me another operation, almost the same as I had two years ago. But two years ago I was fit and strong; three weeks after the operation I was home, a bit wobbly, but laughing it off. Little Ms Invincible. Gloria and Sous-chef; and Gildas, dressed as a Monk; even Obnoxio who had driven an incredible 1500 miles overnight to be here, all gathered with other friends, and we dined and laughed into the early hours by the side of the river. Mr G fed everyone, and found them all at least a horizontal surface to sleep on. Some had more salubrious resting places than others! Would I be able to laugh that operation off again – it will be the third time and I look like a noughts and crosses board as it is…
And the chemo that comes after it? Lesson number one if you are reading this and have just been diagnosed with cancer yourself. Never, ever, take the blindest bit of notice of what other people tell you about their experience of chemo. There are so many different cancers, which affect so many different people of all shapes and sizes, in all sorts of states of health from other matters, diagnosed at all sorts of stages – that you have more chance of winning the Euro millions than you have of coming across someone who has the same chemo as you will be having. Chemo is a recipe, starting with ‘throwing the book at you’, and working downwards through ‘we have seen this sort of cancer at this sort of stage before, and we don’t need to throw the book at you – you can have half as much and it will be fine’, right through to ‘take this tablet every six days for six months and it will go away’.
Just my bloody luck that I managed to get a ‘we haven’t got a clue’ type cancer in a unique manner for which ‘throwing the book at it’ might or might not work – and it nearly flattened me in the process. Truthfully, I wished I were dead many times, just to put an end to it. I was never sick though – yah! boo! all those people who told me ‘it will make you ever so sick’…..just about every sort of drama you could imagine instead, and some you couldn’t. Mr G had a loyalty card for the local A & E. Of the six of us who started on this haute-density chemo – there were only two of us left after six months. We didn’t just mourn the most intense friendships there are; we mourned the loss of innocence that had led us all to believe that you just ‘had the op, manned up to the chemo’ and everything would be OK. It’s more profound that that, it changes you for ever. Can I handle it again, knowing that it might not work, might see me off faster than the cancer? I don’t know.
When you sit in a restaurant and overhear the sort of conversation at the next table that goes ‘perhaps next year when the children go to university, we might go to Greece, I’ve always wanted to go to Greece’ – you have to physically prevent yourself from taking them by the scruff of the neck and saying ‘what’s wrong with tonight – get on a plane, go on, do it’. You have to remind yourself that other people have the right to dawdle through life, putting things off; thinking the next pair of shoes they’ve promised themselves are more important than going to see their Mother; that they can be as shallow, and as superficial; tell lies, procrastinate, bullshit their way past the important things in life, as they want.
It’s only you that has had to wake up to the reality that ‘tomorrow’ is always a bonus.
So I don’t know how you chose between the two options, if there are to be two. I have made my decision that if more treatment is offered, I will take it; because I can’t look into Mr Gs eyes and know that he knows that I turned down that chance. It does mean that I have had to spend the last couple of weeks taking all sorts of grown-up actions, like making wills and other profoundly depressing things that any normal person would much rather ignore.
One of them, is what to do about this blog. The blog that gave me so much strength and support through the last five years – distracted me; gave me a space to be someone else; a outlet to write; and most of all, the company of some of the most intelligent, interesting, articulate, evincive, erudite, individuals I have ever come across. Do you know Guido told me he daren’t look in his comments? ‘There be dragons there’ he said. Me? I can’t wait for the comments on each post I burble out. What a fantastic crowd you have been. It matters not whether you agree or disagree. I have learnt from every last one of you.
The problem is, this isn’t one of those free ‘Blogger’ type platform that could just float round in cyberspace for ever, regardless of what happens to me. I pay for the bandwidth, I pay for the domain – and if I pop me clogs, then it becomes Mr Gs legal and financial responsibility – and he wants it like a hole in the head. Who can blame him, it’s like a bucking bronco on steroids at times. So my solicitor holds the reins now – and if I am not around to nurse my baby – he will pull the plug on it faster than you can blink. That is a gentle hint that if there is anything on here that you think you might want to refer back to – there is no time like the present to download it. Wayback machine will always pull up individual pages, but you will no longer be able to browse as you can now. It’s been a hard decision, because I know there is a lot of information on here that many of you refer back to time and again. I know also that many of you would have offered to keep it going and even pay for it – but if it disappears, it will be because it has become Mr Gs decision; his future life, his decision to make. Not mine. He deals in wood, not words. God bless his size ten feet planted firmly on the ground.
I can’t pull the plug on it – I’m too proud of all the amazing things you have done, the work you have put in. Raising near ten grand in a few days to get Nick Hogan out of prison? Incredible, it had never been done before. Battling away with Sandwell Council, flooding them with e-mails until they agreed not to prosecute Sheila Martin for leaving cigarette ash on the pavement…the only known time they have backed down from a prosecution. And Steven Neary? You retweeted that post so successfully round the world in the tens of thousands that the judge hearing his case said he would open the Court of Protection to the media for the first time in 900 years ‘owing to the widespread social media coverage the case had attracted’. Brilliant! Graham Mitchell? Thrown in jail on a Portuguese murder charge – until you helped track down the ‘victim’, alive and well in Germany! Blimey, we’ve had a few haven’t we? I’m sure I’ve left some out.
Last, but by no means least – the Savile saga.
I spent many years interviewing ‘patients’ of the Court of Protection. Sadly, in Wales, my area, too many of them had been victims of sexual abuse. Sweet, innocent, trusting, Down’s syndrome girls. Lads who had suffered brain damage and fallen prey to unspeakable abusers. Their stories will haunt me for ever. The young girl raped by her uncle in front of her helpless, paralysed, Father. Was she damaged by what had happened to her? I don’t truly know – she didn’t have the words to tell me if she was – but her Mother will be traumatised for ever. As will the parents of the girl ‘fiddled with’ by the bus driver who took her to school everyday, by order of a government that decided in its wisdom that ‘every child’ should have full time education – even though in ten years she had never even learnt her name. How do they let her get on another bus knowing it could happen again? I don’t know. And the young lad I met who I suspected was being abused by his ‘carer’ – reports were written, months later more carefully worded requests were sent to social services to ‘investigate possible…etc…etc’ and the next time I saw him, two years later, he was in hospital, with a bandage the size of a rugby ball in his lap. He had poured boiling water on his own penis. He couldn’t wait for the endless meetings and inter-departmental conferences to solve his problem for him. I felt so physically sick I nearly ended up losing my job over that lad; I took the law into my own hands and made a couple of phone calls that resulted in the hospital refusing to release him until he was given a place of safety – they have a duty of care that overrides all the cautious – ‘might get quoted in court’ – reports that the various departments bat between themselves.
Why do these thing happen? Because there isn’t enough money around to pay enough good hearted people who are prepared to work on minimum wages with awkward, unhelpful, truculent, brain damaged individuals who pee in their pants, and even break your arm on occasions – there simply aren’t enough of them to make sure there are always two adults on that school bus; that the paralysed Father doesn’t have to rely on his bastard brother to ‘babysit’ him when his wife goes out; to ensure that suspect carers don’t get to work on their own, unhindered, in a grotty flat with a vulnerable lad. It costs money to provide that sort of care to such deeply vulnerable individuals. Bucket loads of money.
The sort of money that newspapers make out of printing salacious and unfounded stories of alleged child abuse by dead celebrities; the sort of money that journalists get to take home at the end of the week when they’ve dreamed up more ways to get a celebrity’s name alongside the words ‘child abuse’ in print; the sort of money that television companies earn out of salacious programmes with no foundation of truth; the sort of money that pays for expensive advertising so that charities can pay their inflated wage bills; the sort of money that ex-coppers make out of flogging such stories to the papers and television companies; the sort of money made out of flogging trashy miseri-lit books to the supermarkets; the sort of money that lawyers make out of filing ‘compo’ claims for middle aged women who once met a celebrity; the sort of money claimed by women who see this latest charade as no different to claiming for whiplash or ‘PPI’; the sort of money you make out of flogging Child line to a charity as though it was just another commercial package; the sort of money you save by buying Jimmy Savile’s belongings on the cheap after his reputation has been trashed; the sort of money you make out of running ‘child-protection courses’ for every Tom,Dick and Harry that might be required to work on a building that a child might enter; the sort of money you make out of chairing endless ‘Inquiries’; the sort of money you make out of writing up ‘serious case reviews’ on the latest scandal – even the sort of money you make out of carrying advertising on a blog detailing more alleged abuse.
All that sort of money. It’s blood money as far as I am concerned. Money made out of turning child abuse into light entertainment and a means of paying the mortgage. It sickens me to the core.
Every penny of it is a penny not available to put boots on the ground, on the school bus, in the ‘supported living’ apartments; befriending vulnerable children.
One of those amateur ‘journalists/child protection’ activists called me a ‘child abuse supporter’ last week. Nah! Not I, flower! I’ll fight to the death for vulnerable abused children. I don’t make my living out of publicising so-called celebrity ‘child’ abuse. ‘Tis you that depends on continually feeding famous key words into the ether to put food on your table. How do you live with yourself?
These profiteers, charlatans, fakers, frauds, opportunists, sham emoters, fictitious ‘survivors’, quack ‘protectors’, bandwagon jumpers, should be put out of business. This multi-million pound ‘industry’ closed down. It should be against the law to make one penny piece out of child abuse. No more prime time TV; no more advertising on newspaper pages reporting on cases; no more books published for profit; no more slyly written articles hinting at more arrests to come for political advantage; no more claims for compo; no more high paid lawyers; no more mortgages being paid for by getting just the ‘right shot’ of the wide eyed child that ‘£2 a week can save’; no more any of it.
If there is a crime more heinous than child abuse – it is making a financial profit out of its existence. Shame on the lot of you.
I’ll make one exception. The unsung heroes who are actually out there, boots on the ground, underpaid, under-appreciated, actually protecting vulnerable children.
Too damn few of them. Society is too busy throwing money at the charlatans. Daniel Pelka starved to death for want of boots on the ground whilst this multi-million pound industry danced its endlessly profitable jig.
On the other hand, of course, l’il Ms Invincible might just manage to pull her chestnuts out the fire again, you never know, I’m bloody minded enough; and if that happens, I shall be glad I didn’t pull the plug on the blog, I’ll want somewhere to write again one day…..
Postscript: Wow! My lovely surgeon just phoned, he’s seen the latest scans – my lungs are clear as a bell, and he reckons he can remove this latest tumour. So it will be surgery and more chemo, it will be some months away from the blog – but Hell that is sooo-o-o-o much better than the alternative.
I am henceforth officially the cat with nine lives. Only used up two of them so far.
I debated whether to say anything before, but here goes. Apart from a shed load of wonderful e-mails I received this week, which mean so much, and I couldn’t possibly answer them all; I also received a very unexpected parcel. Boxes of Yorkshire Tea with a most surprising addition. The Savile family sent me Jimmy Savile’s own personal crucifix. It is a beautiful thing. Now I think everyone knows that I am a Quaker, and don’t hold with middle men or icons…but I appreciated the emotional value the family placed on this memento of Jimmy and I was very touched by the gesture.
However, setting off for the last scan a few days ago, I thought, ‘what the….’ and popped it into my handbag at the last moment. Listen, I needed all the good luck going. Don’t knock it.
I did idly ponder at one point that day how bizarre my life has become, sitting there listening to a Doctor explaining in French how they were planning my last few months – with Jimmy Savile’s crucifix in my handbag….you really couldn’t make it up.
But something has worked. I’ve had incredible luck as anyone with any medical knowledge will know. I’m not prepared to rule out ‘Jimbo’ as my little friend is now known. He’s going everywhere with me for the foreseeable future.
I’ll be back.