Waiting for the autopsy

So, let’s just get this right. You died, I fortunately was there, then the kind Palliative nurses put some weird elastic contraption on your jaw to keep your mouth from falling open and I said goodbye – again. Then, presumably, they whisked you off to reside in the hospital mortuary for a bit and the next time we “see” you, you’re in a coffin in the side entrance of the crematorium, waiting for the funeral service to begin.

In between times however, Lord only knows what they did with your body. I’m not sure we really want to know too much either, although if I’m honest, it’s another of those morbidly fascinating things that you kind of want to know but don’t want to at the same time. And you know me, I always like to KNOW about stuff, especially the stuff ‘not talked about’. I’m so not like Gran in that respect. Gran didn’t like to know about stuff you don’t normally talk about; she went all tight-lipped and stiff, preferring always to simply ignore it and pretend it didn’t exist. Out of sight, out of mind. How different I am. Maybe that’s why.

Anyway, we know they’ve conducted a brain autopsy on you because we were told they would and we didn’t have much choice in the matter anyway. As was explained prior to your death, all CJD patients in France are highly recommended to undergo this procedure post-mortem as it will determine what kind of CJD variant the patient had, plus provide valuable research information for the future.

So, where exactly is your brain currently? It didn’t go with you in the coffin, did it? Or at least it didn’t go as a whole organ. We know the autopsy was done in Paris so is it currently residing in some formaldehyde-filled jar in a hospital science lab with a sticky label on it denoting “Property of…”? Seems so rude to just remove something that belonged to you, something that you couldn’t live without and that served you so well for seventy two years, and then just plonk it in a jar somewhere for clever, white-coated men to fiddle about with. There’s a part of me that would kind of like it back, but then what would one do with it?! I know you’d be utterly horrified at that thought so perhaps we’ll forget that idea. Although you did love Kathy Reich and her forensic science books in real life, Mum. How bloody ironic. 

So, we’re missing your brain, or part of it, whilst it’s still under observation in Gay Paris. At least you’d approve of that. You did love Paris with all it’s style and class and bloody rude Parisians. I have to say Mum, that I’d put money on the fact that not many Sheffielder’s brains end up in Paris to be this closely examined. And, as we would have a good snort about over a cuppatea, there could be a lot worse places where one could be left – the Northern General NHS would probably be up there for a start! How common, ‘eh Mum ;-). Now you wouldn’t have liked that, would you?

The thing that is truly horrendous to think too much about is the fact that whilst they are slicing, examining, dyeing, testing and doing whatever else with your brain, your two children are in fact playing russian roulette in the Waiting Room next door. For the last five months since you died, Robert and I have just had to sit by and wait for the hospital to eventually call us, hopefully to relieve us of the angst that you could have unknowingly passed this on genetically to both, or one, of us. We are literally on the edge of our seats, the potential outcome of the quality of the rest of our lives is held in the rubber-gloved hands of some lab scientist in Paris.

Will it be Sporadic (as predicted by your hospital, based on blood tests and MRI imagery), Variant, Iatrogenic or God forbid, the family death sentence, Genetic CJD? What’s the difference between all those forms of CJD then, you may well ask? Well, that’s the billion dollar question isn’t it? Global Governments and some of the worlds biggest money-making industries will quickly and reassuringly tell you that they are completely different and not in any way connected. I, for one, don’t believe that. Just like I don’t believe that this disease is famously quoted as affecting “one a million” either.  I am an active member of various CJD groups and organisations and I can tell you that having read everything I can get my hands on about CJD all the afore-mentioned variants could well be proven to be linked by cross-contamination from animals to humans via ingesting animal products and by-products, and also passed from human to human via infected blood. And there’s waaaaaaay more than “one in a million’ who gets it too.

Frustratingly, there is currently no blood test that can detect CJD either. Another reason why this disease needs more recognition and funding.In brief, here’s what the powers-that-be put out as the ‘official word’ so as not to cause widespread panic amongst the public.CJD is diagnosed as being one of four variants:

– Sporadic CJD

This is reportedly the most common variant. Up to 80% of people diagnosed with CJD are labelled as having the “sporadic” version and it has been found in every country in the world. Basically it translates as “occurring without really knowing why”. What triggers the CJD to be activated is anyone’s guess. However, the most favoured current theory suggests that the normal prion protein in the brain undergoes a spontaneous change to the abnormal form, thereby resulting in disease. If this theory is correct (and it still has not been proven at this point, hence the very urgent need for more Government-backed research funding) then the disease arises simply as a “chance” event inside the brain and therefore not ‘caught’ in any way. I, for one, do not believe this is entirely true. The scientists and medical fields simply don’t know enough about this disease and have therefore given this variant the wide-open, loosely termed “sporadic” title. It basically means very little. As I say, they need way more research and financial backing to find out exactly the cause, diagnosis, management and hopefully cure of this dreadful disease.

– Variant CJD

This is the variant everyone’s heard of connected to CJD. It the “Mad Cow Disease” version. The one that gained rapid notoriety in the mid 1990’s, the one that filled the media’s pages and news slots, the one that put the fear of God into everyone in the UK, the one that the Government tried to brush under the carpet.  The current view on variant CJD is that it has resulted from transmission of infection from BSE in cattle to humans via infectivity in food. Given that CJD can have an incubation period of many decades and that, as I said earlier, there is no blood test that can detect CJD, none of us know how many people are carriers of this disease and how many will go on to develop vCJD in the future. Now just how frightening is that? 

– Iatrogenic CJD

We’re told this is very ‘rare’ too. Go onto any online CJD forum though and you’ll read a different story.  This is CJD which has been accidentally transmitted during the course of medical or surgical procedures – notably brain surgery – as instruments used on a person with CJD may not be disposed of and re-used on another person. It happens more often that we like to think about sadly. Another important example of this variant however relates to CJD transmitted via Human Growth Hormone treatment in childhood.

– Genetic CJD

The dreaded version as it affects generations of families. It is seemingly rare but who really knows the truth behind this statement? In this form, CJD is caused by an inherited abnormal gene. The illness is therefore not “caught” in any way and we’re told that there is no causal relationship between this form and BSE. In most cases, the illness is known within the family because of the family history. Occasionally though, genetic cases are seen in which no previous family history is identified.

So here we sit, and continue to wait for the official diagnosis of what exactly killed you on 5th October 2013, just three months after we got married. From the biggest high to the biggest low in one fell swoop.

Meanwhile the wheels of life continue to turn, and my brother and I try to live as fully as we can knowing how very quickly life can be taken away.

Let’s hope the CJD death sentence leaves us alone.

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Dying, Part 1

“MUM! Good Lord! Whatever’s happened?”

My 72 year old beautiful Mum is sitting outside in the sun at the table, I am opposite her and she has both her arms and hands in the air. They are twisted and contorted in the most alarming way. She is grinning at me and appears oblivious to the weirdness of the situation. I, on the other hand, am totally shell-shocked. I’ve just arrived at her house after being given the low-down by her friend, Mike, who had loosely described her symptoms as “well, you’ll see, she can’t really use her hands”. Jeez, she can’t even see her hands at the moment, let alone use them.

Breathe Lucy. Don’t show your upset and concern too much. It’ll just frighten and worry her, I instruct myself. Harder to say than do. She looks so very odd and so, well, deformed is the only word I can think of. I want her back to normal, I want my lovely Mum back, what’s happened for God’s sake?!

“I’m taking you back to the doctors. I’m going to call him now”. With that I hastily scroll down my contacts and find the local doctor’s number. With a shaking finger press I press the call button.

“Oui?!” he answers curtly. For unbeknown to me he is on his day off and currently having his lunch. Being French this is a very sacred occasion and nothing, but nothing, is allowed to get in its way. He is very annoyed that I’ve called. I explain the situation in my stilted, medical French but he is having none of it. I’ve committed two deadly sins in one brief act and now he is not just annoyed but clearly angry. Patience and compassion, understanding and empathy are nowhere to be seen. I am told that I must call an ambulance and get them take her to the doctor, or failing that, if I am so concerned then “just drive her to the hospital yourself”. He is fed up with talking about my mother’s condition, as far as he’s concerned she’s had all the necessary medical tests and it all points to her being just another depressed, elderly woman going through marital problems. He’s told us this several times before. Then he hangs up on me. I am speechless. Then I am bloody furious.

“RIGHT! RIGHT! What’s the ambulance number?”, I bark at Mike, who is gently trying for the zillionth time to coax my mother’s arms down from the skies above.

None of us know. Is it 19? 112? 15? Crikey – where’s the sodding emergency number list when you need it? I am panicking, I can’t help myself. It’s all too much and the damn, horrid, unhelpful doctor has just tipped me over the edge.

I dial 112 and am told that there will be an ambulance coming within 15 minutes. They will transport my Mum, whose legs are also refusing to carry her without falling, to the doctor’s surgery and we’ll go from there. Mum seems flustered, she wants more time before she leaves the house, she needs to get changed, do her lipstick and get her hair right. I gain some slight comfort that at least her vanity is intact.

After a short time, huge wheels are heard crunching up the drive. An enormous, red fire engine comes to view, parks and three burly “Pompiers” (firemen) jump out of the tank, complete with bags, rucksacks and boxes. Ah, resuscitation gear. Oh Lord, this is not quite what I asked for. I am so going to be told off. I try to explain the situation in crap French as they stomp through the house and out of the back door to attend to Mum. I feel rather foolish as she’s not exactly dying, is she?

It simply doesn’t cross my mind that she won’t get better from this, despite the obvious severity of the symptoms.  I am positive that if I can just get her back to the doctor and get the sodding prescription for an MRI scan (I’d been demanding one for over 3 weeks) that she’d eventually be given all-clear. The “suspected stoke” wouldn’t exist and it would all simply be down to recoverable, chronic stress.

Some relief that at least she was in good hands now. The pompiers are concentrated on doing vital sign checks on Mum, and I busy myself with finding her most recent prescription which lists the dazzling array of antidepressant and sleep inducing drugs her mind is currently being chemically altered by.

One of the pompiers thinks that the cocktail list seems “excessive,”even dangerously high. I am aware of this already, having Googled the name of every drug and researched its dosage potency. Still, doc knows best so we had to run with it.

The pompiers are clearly concerned enough about Mums state to get her to the doctor quickly. I don’t feel quite so bad about them being wrongly called out now as it’s obvious to them too that she needs urgent assistance.

Poor Mum, she looks so thin and frail; she’s never exactly been a meaty person at the best of times, but recently her lack of appetite combined with the difficulties in being fed has meant that her weight has dropped, leaving her with a thinner face and protruding shoulder blades. She looks like a delicate bird.

She is stretchered into the gaping back doors of the fire engine wearing a look that tells me she is frightened, confused and highly embarrassed. I attempt to reassure her that it’s ok, that I’m following her right behind in the car and that we will get some answers from the doctor very soon. It’s a bizarre status role reversal; I am suddenly the one in charge, the “Mum,” and she is the dependant, helpless child. How must that feel? Will we ever return to normal? Is she going to get better? I quickly dismiss the incessant, ever-present niggling thoughts and concentrate on getting into John’s car.

John, never renowned as the world’s best driver, somehow manages to get us into Lorgues centre and as near to the surgery as possible, despite the end-of-market traffic mayhem. The pompiers are just lifting Mum out of the van, lights are flashing and people on the pavement are stopping to gawp. Mum is terribly embarrassed, I can see her mind yelling, “Stop! What if someone I know sees me like this!” It is beyond mortifying for her.

She’s taken up the rickety, steep Provençal stairs of the old building to the first floor waiting room of the doctors surgery. Its pretty basic and very French. Thankfully the doc has been patiently waiting for us and comes straight out. The pompiers bid their farewells and we settle Mum onto the couch for her assessment. I am ready for battle and in full action mode, armed with 1000 questions that I want answers to. All the conversation is mine for the first 5 minutes as I relate every little detail that I know to the nodding, sympathetic doctor. I reiterate again the request for an MRI “to be sure that there’s been no stroke or anything”. She takes it all in, asks me some questions, refers to Mum’s previous notes on the computer and sets about examining her. Reflexes are checked, arms and hands are gently outstretched, eyes are asked to follow her hand and so on and so on. Mum performs them all, albeit it slowly and shakily, but as soon as her arms are manually pulled down they immediately go straight back up again. She is told to breathe and “relax, relax, relax,” then she’s asked repeatedly to bring her arms down to her sides. She mostly manages this with considerable effort and concentration, but I can tell how much work it is for her and I want to cry with frustration and helplessness. Mostly though I want an answer for this problem from the doctor, and I want it resolved as soon as possible.

All the time we are talking and examining Mum it feels like she isn’t actually in the room with us. I catch myself numerous times and turn towards Mum when I’m referring to her to look her in the eye and include her in the conversation. After all, we are discussing her body, not mine. She can’t speak at all, tries but no audible words come out, but she is performing daft, lopsided grins or rolling her eyes in a “how embarrassing and silly is this” kind of way. It’s so hard; she should be able to speak for herself yet here I am playing my usual bossy daughter role and controlling everything. I know I have to but it does feel wrong. We’re already treating her like she’s in a vegetative state and that just sucks.

After a while of prodding, poking, consulting and tapping away at the computer the doctor finally looks up and says,

“Well, given her history and circumstances we know she is under chronic stress. The drugs that have been already prescribed need more time to work so we just have to bear with them a bit longer, about another two weeks. If nothing improves by then them we will go for an MRI to double-check what’s happening in the brain. Meanwhile I am going to prescribe a high dosage of magnesium to help with the muscle spasms, but really she needs to relax and rest as much as possible”.

No shit, Sherlock. Rest and relax? Yeah, that’s what we’ve been trying to get her to do for a while now and see, sweet lady doc, that just ain’t WORKING! That’s why she’s on this cocktail of drugs, to get her to that relaxed state of mind more quickly. You think these spastic arms and the fact she can’t walk, talk, sleep or stand are the cause of chronic stress?? Seriously? I’ve never seen stress cause something as disabling as these issues.

Instead I say, “Ok. So you won’t prescribe an MRI for her at the moment?”

“No,” she says. “I don’t think she needs one. The CT scan is all clear. Let’s wait for the drugs to start working”.

Right ho. Some relief, at last. I smile at Mum, take her hand and say, “See, it’s what they keep saying, it’s just stress-related. You need to let these damn drugs do their work and relax as much as possible and you’ll get better. We can go home now”.
She smiles her half smile, she’s so relieved to hear this and wants nothing more than to go home to her precious dogs and own comfy bed.

John helps us to get Mum into his car, it’s not easy as her right arm keeps sticking out of the door like a twisted tree branch. We all giggle and John makes a joke; it helps relax us in this bizarre situation.

Once we’re home the dogs dance with delight and swirl in and out of our legs. They don’t understand what’s been happening recently, why their routine is all topsy turvy – they don’t like it one bit. They want normality and their mistress back to how she always is, not an endless stream of folks coming in and out, too much silence, too many random cups of tea nearly falling on their heads and only one short walk a day.

Mum is exhausted and weak; the whole episode has tired her out completely. She is helped to sit down at the kitchen table so I can make her a late lunch. I too am exhausted, with worry, bad sleep and adrenaline, but I can’t rest, there’s too much to be done. I clear some dirty dishes off the table, pop on her bib, make her a lukewarm cup of tea in a baby beaker and cut up a cheese and tomato sandwich into toddler-like portions. Then I attempt to feed her. It’s a very messy and frustrating business. Worse than feeding a child as she has adult teeth and a tongue that refuses to function properly. As the juicy tomato pips ooze out of the side of her mouth and hang, cliff-like on her bottom lip she giggles. She seems to find it all hilarious which in fact is a great reliever given the whole humiliating scene. I giggle with her, it’s funny if it weren’t so bloody awful. This is her worst nightmare, being a burden on me, unable to be independent. Yet she laughs. I truly don’t know what to make of it all so I do a Lucy by occasionally swearing at the ridiculousness of the situation and just go with the flow.

The tea dribbles down her chin and the portions of sandwich are all dented in the middle where she’s heavily squeezed them in an attempt to hold on so the filling has all oozed out everywhere. It looks like lunchtime in an old people home; and smells like it too. I feel slightly nauseous; the odd bits of sandwich she has managed to get into her mouth have lodged in the crevasses of her teeth and gums and they are staring straight at me. This is so not my Mum. She is always so very elegant, proud and self-conscious of her appearance at ALL times. Luckily, she’s still finding it funny. Sadly though, I know by this factor alone that she’s not functioning properly, so whilst we laugh out loud together my stomach is secretly churning around into a tight little knot.

We finish lunch, she’s managed to get something in her stomach at least. Now its time to clean her up and let her lie down. I too am exhausted as the weight of the last two years is bearing down heavily on me. Who could have predicted this? Dad finding someone else at 72, he and Mum splitting up at 72 and 70 respectively, lawyers and divorce proceedings, Mum getting ill, me getting married and all the while struggling to have another baby. Completely bonkers the whole lot of it. You couldn’t make a drama series better than this.

As she wobbles like a drunk up the stairs I find myself thinking, what if this is forever? What if she never gets back to normal? What the hell are we going to do then? Will she live with us? How will we cope? Tears of self pity come into my eyes but I have to quickly bat them away as I am fully needed to steady her on the stairs and steer her onto her bed. How I hate my father at this moment. Where the bloody Hell is he? He should witness this sorry state of affairs for himself instead of gallivanting around with his new woman, Beryl (otherwise known as Blasted Beryl, or BB for short), and then maybe he might actually see some sense and help. In fact BB should also see this situation and maybe then she might realise what their combined actions and behaviour over the last two years has caused. They have no idea of that I am sure. Having been the bearer of much of my Mum’s inner anguish, worry and pain I feel justified in my belief. In fact I am livid at the thought of my father and BB. How can they merrily sail off into the sunset without a care in the world except for their new-found, smug coupledom? And any way, who in their right mind decides to up sticks from the family home, after 50 years of marriage, (even if it wasn’t all a bed of roses – that’s just life, right?) and leave a 70 year old dependent woman on her own in a big house in a foreign country? Not anyone I know that’s for sure.

Mum is now on the bed, twisted and with her mouth open. It’s not a very pretty sight and it sharply draws me back to the present. I arrange her as best I can into a more comfortable-looking position (for whom though, I am unsure.. me or her?) and let her drift off into sleep.

Finally I am released from duty. I tiptoe downstairs to began the lengthy process of informing concerned friends and family of her current update. I just want this nightmare to end.

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Every Woman Should Own A Red Dress

Every woman should own a red dress. They are made to wear on days like this.

My own red dress was selected today in honour of Mum, who would greatly approve of its smartness and femininity, but also in defiance of CJD, the deadly disease that is killing her softly as I write.

For red is the colour of strength, fight, confidence and blood. It screams, “Look at me! I take no shit. I am bold, defiant and strong – and I am ready for battle”. Only this battle is beating us and I can hardly bear it.

I look down at Mum, peaceful now in her drug-induced state, lying in a French hospice bed, all artificial life-prolonging apparatus now removed and for the billionth time I think, “Why Mum? Why now?”

She looks about 20 years older than her 72 years and that distresses me greatly. Always a woman of great pride, she’d be terribly upset at looking like this.

Her hair, only recently washed and blow-dried to its full, thick, glossy, blonde perfection is now greasy and lacking lustre. The nurses have slicked it back and given her a side parting, something she’d never have done herself. It looks all wrong and I don’t know what to do to help as whatever I do with a comb won’t make her look like she usually does. So I opt to do nothing, but continue to scan her face, neck, chest, arms and hands, trying to memorise every little detail of her exposed flesh for when the inevitable happens and I can no longer see her.

Sometimes I talk to her, but it’s less these days as she is now in a deep, drug-induced sleep and I am no longer convinced she can hear me. Maybe she can sense me but hear me, I think not. I chat on however, perhaps more for my own sanity than for Mum’s benefit. I talk about how much I love her, how I shall miss her, how I am not sure if I can cope without her, whether I will be a good enough mother to my daughter as she has been to me. I ramble on about the hospital room, the angelic nurses, the sea view, the airport view, needing a coffee, what Patrick is doing, what India is doing – anything and everything. And I reassure her that it’s ok to go, it’s all ok. I repeat this over and over, more an affirmation to myself by speaking it out loud.

It’s far from ok though. I am lying. Every day I am lying to my Mum. It’s not ok at all and I am scared witless inside. As I speak the untrue words over and over I wonder if Mum can tell by my tone that I am lying. I try to sound strong and convincing but sometimes my tears betray me and I have to turn my head away to cry.

I keep catching my breath as the enormity of the situation we find ourselves in overwhelms me. I am aware that I’m doing this as moments can pass before I realise I’ve been holding my breath again. All the time Mum sleeps on; short, noisy breaths punctuated with the occasional catching of liquid in her throat causing her to swallow hard, then the breathing pauses and then it re-starts. Every time I hear her do this I watch intently to see if her chest will rise up again to inhale another breath. It’s fascinatingly morbid and I hate myself for being such a bloody voyeur.

In truth, I am in awe of the human body and how it naturally knows how to die.

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