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Dying to be Heard.

This is not just any pink sponge on a stick – this is a M & S pink sponge on a stick. 
Well now my beauties; have I got a tale to tell you!
It will not be pretty; it will not be restrained; it will not be organised. It will emerge in the order that best suits me, not you. If you find that your squeamishness outweighs your interest in the truth – best you push off now. There are people out there waiting for this part of the story to emerge, and their needs outweigh yours.
If the world turns overnight, if the sun rises in the morning, if the moon pulls the tide out to sea, I may continue tomorrow. If it doesn’t. Tough.
It will be, absolutely, categorically, part of the last series of posts that will ever appear on here.
It will be what it will be – no more, no less.
Some will be of interest, some won’t. I note that this section is already 9000 words. This may turn into a book. ‘FU’ too. It’s my blog.
Engage reverse, and we will go back to the 19th October 2016.
Apart from the minor detail that I have now been on the ‘Gold Standard for End of Life Care’ with terminal cancer for 19 months – there appears to be sod all wrong with me. I have been swimming – perhaps not the 50 lengths I was doing but 16, which is an improvement on the 13 of the day before.
I have helped G prepare lunch for Jonathan King who is dipping his toe into public transport with the hoi polloi for the first or second time in his life and arriving at my house for lunch – rather than me travelling to Marrakech/London/Cambridge or any of the other places I have hauled my arse to, at my expense, in order to make it easy to meet (or ‘collaborate’ as Owen would have it) and discuss our next moves in the great chess game called ‘VIP abuse’….
Lunch is a success, and Jonathan is decanted by taxi back onto a train to London. G takes the dog for a walk – and returns to find me unable to speak, or stand, vomiting black fluid at a rate of knots. G has a loyalty card for the local A & E; is well used to the routine of blockages followed by sickness followed by ‘is it coffee grounds?’ followed  by temporary admission – but this is unusual even by his unflappable standards. He telephones the acute oncology service and is told to bring me straight there.
You cannot drive a car and stop your wife from choking single handed; he calls an ambulance. He hands them my DNR (yes, that effing DNR yet again) the consultant’s letter detailing my miraculously healthy condition not five days beforehand, and my medication, and waves me off – confident I will be sent back in the early hours.
Unfortunately (and as you will see, later on, I have developed a phobia towards the word ‘unfortunately‘, especially when it appears twice in the same paragraph) I arrive at the Norfolk and Norwich Hospital, presenting as a near 70 year old with a terminal diagnosis whose vital organs are gradually fading according to their blasted machines, who has lost control of her bowels and bladder, and has a DNR notice pinned to her nose.
Just one more turkey filet passing through on the great NHS machine.
Had I been 30 – someone might have checked their ‘laminated, pocket sized, can be fitted to a lanyard’ and hung round their blasted necks, (no really, have a look at the CQC report) Sepsis identification checklist. Hells bells folks, it was only four weeks ago you were celebrating ‘World Sepsis Day‘.
I cannot honestly say at what point it was realised that I had Sepsis. I can tell you that when Mr G arrived the next day I was purple with bruises, had no veins left for them to play with, and had tubes coming out of my feet. I can tell you that I spent the night listening to a long whinge from two people standing behind me concerning the fact that they would have to work an extra hour unpaid on the following Saturday because the clocks went forward and they hadn’t been on duty when the clocks went back in the spring and others had unfairly been paid for an hour they hadn’t worked. Interspersed with my falling blood pressure, sats, and the fact that the Doctor had written me up for a nasal pump (music to my ears, as those of you who have been around forever will recollect….) Every time I threw up, a vomit bowl appeared over my right shoulder and was expertly located under my chin. I have no idea what either of the whingers looked like…
Next morning Mr G flew like the wind (a remarkable feat at his age) to the Palliative Care Consultant’s office – who had no idea that I was even in the hospital. Nobody had told her. Possibly I am being monumentally unfair in giving her the credit for getting me on antibiotics, maybe a thoroughly responsible and dutiful junior Doctor was my saviour. Until I know for sure, Mrs Palliative Care will get the credit – for I only remember her hand on my foot, and her voice saying ‘Susanne’ – and either ‘this is not the cancer’ or ‘ you are not dying from the cancer’ – I really couldn’t tell you; I can just feel that hand and hear my name and I absorbed that message.
Phew! Somehow we arrive at Sunday morning. The days in between are a blur. I do clearly remember someone fitting the arm in which I now have a large tumour to go with all the others, with a blood pressure band and my wincing with pain – when I explain they write on my notes ‘right arm only’ – they also right ‘confused and disorientated’ on my notes. Why? Because some part of my brain still retains its Scouse sense of humour, and I have stroked this new tumour and responded ‘That’s Jimmy Savile, hiding in plain sight’. As I have said it, I have regretted it – they recoil like mongeese in the face of a row of rattle snakes. I’d have got a milder reaction if I’d pointed an Uzi machine gun at them. What am I thinking of? They write ‘confused and disoriented’ in my notes, which is NHS speak for ‘she thinks she’s got a paedophile living in her left arm’…. My tongue is no longer glued to the top and bottom of my mouth.
I can speak, I can lift my head.
Mr G, who has tin cans on the ends of his fingers when it comes to a keyboard, and is disarmingly, uproariously, dyslexic, has achieved a miracle. By dint of the mobile phone, and a conversation along the lines of “No, ‘R’ darling, just to the left of the ‘T’ – top row!”….has managed to shut down comments on the blog….if only they made computers of wood. He’d wipe the floor with the lot of you.
A bottom of the rung, most junior, just been fitted with her uniform, dreadfully nervous, nurse arrived at the foot of the bed on that Sunday morning, four days after I arrived. She delivered an astounding message.
‘Would I like to wash my face and rinse my mouth?’.
I bet you had no idea that our wonderful NHS laid on such a personal service and act of kindness. (Naturally such a suggestion had never occurred to Mr G who is still labouring under the impression that I am ‘in the best place’ and ‘people are caring for me’). Well, colour me gob smacked. She even washed my legs and found what appeared to be one of those string bags they sell onions in, but are apparently ’emergency knickers’ and hold an incontinence pad in place. She had to ask for help from something in a dark blue uniform which passed the door, because the logistics of tubes in my feet and two in my stomach required a second pair of hands to navigate. She got a thoroughly sarcastic response. I doubt she’ll ask for help again.
I have come to the conclusion that nurses are a lot like sheep. They start life as sweet natured gambolling lambs bringing joy to all who meet them. Each year the Ram stuffs them and leaves his mark of blue raddle, and by the time they are gimmer shearlings they have thick ankles, and are dark blue from neck to knee and neither use nor ornament to man or beast.
Still, stop whinging Ms Raccoon! I am alive, they have saved my life. The pink sponge on a stick has been exchanged for an entire glass of water. Come the following Wednesday they want their bed back – I’ve had it for a whole week. What am I thinking of, oh selfish cow?
The tubes in my stomach are attached to ‘pump drivers’. They deliver a mighty wallop of steroids (this is not a clever idea for a woman whose default position is only slightly to the left of manic at the best of times – but I understand the medical necessity and do my best not to practice morris dancing at 4am or any of the other things I have been known to do previously on a tenth of this dose…) the other delivers a powerful anti-emetic and pain relief. They go wrong if you so much as look at them. If you fall asleep and bend the wires; if the drug is about to run out; maybe they just ‘don’t like Mondays’. You soon learn to let the first alarm alert a junior lamb, and then turn the friggin’ thing off until they have run through the full gamut of who is qualified to see where you (it is always ‘you’) have bent the tube…..
They suspect I might have ‘adhesions’ from the surgery. When it comes to discharge, they only have one pump driver to spare. It is decided to combine all medication in one driver. (Incidentally, installed in my left leg, sitting in an office chair, leaning back into another chair, exposed from waist to knee, as at least two people walk in and God knows how many peer in through the window in the door – a horizontal surface on which to fit this contraption is beyond the wit of this place called ‘envy of the world’).
I cannot get out of there fast enough.
Halfway home. the pump sounds its alarm. Must be bending a tube the wrong way, right? Turn the alarm off, wriggle, check tubes. 40 minutes later as we walk in the front door, it happens again. Repeat process. Dear reader, it happened every 40 minutes from then until the following morning. On the dot of 40 minutes. Only too predictably. To the bloody second. Eventually we agreed that since we couldn’t both sleep, it made sense that Mr G tried to sleep (and yes, he had tried to sleep elsewhere in the house, but it was impossible) and I sat up waiting for the red light to come on and silenced the pump driver before it could scream its warning. G gets a couple of hours sleep next to me.
Unbeknown to me, it was not me ‘bending a wire’ that was causing the problem, it was the fact that two different drugs had been combined (they are compatible at a lower dose). I had been receiving neither drug since 4pm. By 4am, Mr G had me on my hands and knees in an empty bath, literally hosing me down, as my bowels and my stomach competed to drain every cell in my body of fluid. It was not a pretty sight. Wild horses would not persuade us to call any out of hours emergency service. We would sink or swim alone.
At 7am, I was back in bed, utterly spent, but able to phone a good friend the other side of the country. I couldn’t live with the idea that I was dying and so much of the story was still locked inside my head. To his great credit and my endless gratitude, he dropped everything and set off across country with multi-train connections and a tape recorder.
At 9am, the District Nurses arrived and quickly summed up the situation. They are magnificent. We have two drivers – because naturally the hospital want their poxy driver back and so they have arrived with a spare one to change over. They put the drug I need most in their ‘good driver’ and set up another fresh line for the hospital driver to (maybe) deliver the drug I need less urgently. Sound thinking, folks. They alert the chief pharmacist that whatever his paperwork may say, it would appear that these two drugs are not compatible at these levels….(this one will run and run!!!).
At 12.30 my friend arrives and I spend the next seven hours, yes, 7 hours, dictating the entire story, where everybody fits into it, every last detail that Owen would dearly love to be able to rake over, into a tape and his notebook. No, Owen, I am not going to tell you who he is – that is for me and he to know, and you to find out one day, should it be appropriate, should he so decide. If there is a following wind. If he doesn’t get run over by a bus. Any number of imponderables. Tough. My brain is at peace, I am not going to ‘take it with me’. I can let go. He catches the 8pm train back to Timbuktu.
Thursday and Friday I sleep through, pretty much, in a haze of morphine. Nurses come and go in our house. They discover that these two drugs (or at the least this batch of etc.) are so incompatible, that they cannot even use the same syringe to load the two separate drivers. The faintest trace of the one drug is enough to set off a chain reaction. More angry conversations with the Chief Pharmacist who is many levels above them on the career ladder, but they stick to their guns. Every last item must be replaced. I look like a voodoo doll.
Saturday, and I have had some sleep. The drivers are whirring away happily. I have not eaten a meal in 10 days, being on a liquid diet in hospital, and sharing the results of a fond grandmother down the road who is cooking and pureeing organic produce for a three month old granddaughter. Thank God for neighbours. I understand the baby was less than impressed, but I was suitably grateful. What harm could a cup of Yorkshire tea and a slice of Toast do?
Well it could wake up the slothful bowel for a start. It is a rather painful and non-productive experience. Ms Raccoon, like many an old lady before her, is constipated. The District nurses arrive on schedule, and prescribe a microlight enema. Why would anyone think that this is anything other than a snigger, snigger, old lady, grunt, grunt, brunt of any number of jokes, case of constipation? It doesn’t work. The pain level increases. They leave instructions that since I am perfectly capable of finding my own rectum, (Dear God, I spend enough time talking out of it – just follow the voice!) I am to repeat the process in six hours time. I do, it doesn’t work. The pain ratchets up another notch.
Sunday morning, and everyone is slightly more alarmed. An out of hours Doctor is called out. Faces are marginally pulled when it turns out he doesn’t speak magnificent English. I view his very Indian face with some consternation. He turns out to be an absolute diamond who sums up the situation as though he is running a field hospital in Aleppo. He can feel that this problem goes far back into my colon, actually right up the left hand side and across my stomach. All the morphine has set my intestines more firmly than Lagos harbour. We do have a major problem Houston.
There are three options.

Emergency admission to the chaotic zoo formerly known as the Norwich and Norfolk on a Sunday afternoon. Let’s scrub that one.
A ‘Glycerine’ enema followed by manual evacuation to at least relieve the pain until tomorrow – he freely admits he hasn’t done such a thing since medical school (full marks for honesty) the District nurses are now the other side of the county, and they are the experts at this sort of thing.
Or he can dispatch Mr G to the out of hours pharmacy in a nearby town, and I am perfectly capable of finding my own rectum. It will either work or it won’t. If it doesn’t, I am to present myself to Acute Oncology Service (AOS) in the morning.

We pick option 3. It doesn’t work. I will spare you the gory details, but do-it-yourself manual evacuation is perfectly possible as I have no doubt others have found before me – they just have more decency than to write about it – I don’t. It leaves me in a fit state to at least travel to AOS by wheelchair and car in the morning.
AOS decide to administer a Phosphate enema. It is the equivalent of a time bomb. Not only does it not work, it leaves me roaring, and I do mean roaring, with pain and begging for mercy. Mercy arrives in the form of a junior Doctor who slams a needle full of morphine into my arm before I bring the roof down. It really was the only practical solution by that point. Suitably doped and silenced, I am sent home (‘no beds’) with yet another Phosphate enema to be administered by the District Nurses in the morning, on the grounds that I have an appointment with the Palliative Care Consultant at 11am the next morning. I am ‘her’ problem. None of this really has anything to do with the ‘cancer’.
Full of trepidation on my part, the District Nurse administers the second Phosphate enema the next morning.  A charming little Filipino girl. Within minutes, I am transformed from a normal, polite, respectful patient, into a bundle of flailing arms and legs, screaming, howling uncontrollably, on my hands and knees on the floor. Dear God I had no idea the world could conjure up such pain. Needless to say, it doesn’t work. She has no syringe full of morphine to hand. She has no authority to perform a manual intervention. Fortunately for me, she has a heart, she is a human being, and she is not prepared to see anyone suffer like that no matter what the rule books say. I will defend her to the hilt.
I also have some powerful painkillers. Mr G, who thankfully was walking the dog at the time, so is blissfully unaware of the dramas that have taken place, is presented with a somewhat shaken wife, suitably doped, to be put in the car, delivered to the consultant’s office in an hours time – and not to be removed from the hospital until I have been scanned and suitably inspected. Little Ms Filipino, God bless her professionalism, has realised that something major is badly wrong in the State of Raccoonland. The car is provided with waterproof coverings, for I am now bleeding freely, and we set off.
My lovely, utterly professional, palliative care consultant, a giant of a tiny slip of a woman; the one person who is supposed to let me slip away gently, is now the sole bulwark against the forces of the NHS…she takes one look at me, and demands a bed for me that instant. It takes half an hour to find one. There is nothing more that G can do for me. I am ‘in the best place’. They ‘will take care of me’. Meanwhile, unbelievably (you do not have to believe me, it is a matter of public record) in our home village we have a) a burst water main some 10 yards from our house, closing the road and b) the pumped sewage system in the village has blocked yet again (cue hollow laughter from me) and for the second time in a month is now busy pumping sewage round our house – the lowest point in the village) G needs to be at home to deal with the tardy reluctance of either Anglia Water or the Sewage people to either of these apparently non-events in the busy life of jobsworths. You couldn’t make it up. The road to our house remains closed for the next three days; there is no sign of the water board during any daylight hours, but they appear each night at 6pm and drill, hammer, and bang through the night. On the third night a tarmac gang arrive to fill in the monster hole. The sewage people have put a camera down the drains, and discovered that although they can’t stop the drains blocking up the other side of the village, there is a non-return valve that they didn’t know existed on their maps right in the centre of our garden, when it was a towpath, fitted 50 years ago which has rusted away to nothing. For the second time in a month they have disinfected our entire garden, lower part of our house, and all our plants…naturally the non-return valve can only be fitted on a weekday between the hours of 9am to 5pm….It was, on Monday, and fortunately none of our neighbors put a wet wipe down the drain in the meantime. Phew!
Meanwhile, back at the ranch, the consultant rushed off to another appointment, not even in the building; and a nurse has been despatched to move Ms Raccoon, now handily on wheels, to a bed in the Acute Medical Unit (AMU). After all, I am not dying from the cancer, or ‘her’ province; I merely need the attention of one of the dozens of nurses and Doctors who deal with mundane medical problems. It is even a week-day, 9 -5pm. Why would she think anything could go wrong? It is less than three minutes away from where I have been parked. What could be simpler? I am in safe hands, this is the envy of the world, Right?
In the three minutes that it takes to arrive at the reception desk on AMU, the bed has vanished. There is no other. In fact they have never heard of me. ‘Has she even got a hospital number’ floats over my head – no, but she has a voice and a brain and can speak for herself thank you very much….I can see I am going to go down as a bad tempered trouble maker here too. The reception area is a sea of trolleys and ambulance men, and anxious relatives. We are directed to a corridor full of chairs. It doesn’t take long to realise that this is the queue for news of whoever you arrived in the ambulance with.
By 5pm….yes, my appointment with the consultant was 11am, I have now been sitting on my arse in that wheelchair for 5 hours……I am actually not in terrible pain, because Mr G has had the wit to slip a packet of Fentanyl tablets into my dressing gown pocket as he left me. Just as well. I suggest to the lovely little nurse who is still waiting patiently beside me, the better to wheel me to whatever horizontal surface presents itself, that actually, she may be part of the problem, in that so long as she is accompanying me, they can ignore me. Were she to disappear, I can raise merry Hell and point out their duty of care. Much against her better ‘applying the rules’ instincts, she actually agrees with me. I will defend her to the hilt too.
So, I sit in that corridor, facing the wall for another three quarters of an hour or so. Listening to the rolling news programmes, Trump is to be president, the world is falling apart, Henriques, da dum, da dum…….
Nurses and Doctors hurry up and down the corridor, they have perfected the art of never meeting your eyes, nor involving themselves in anything outside their immediate sphere of influence. I cannot blame them. They work in an atmosphere of total chaos. However, I have a dog in this race too, and I am no longer in any mood to display empathy towards anyone else’s predicament.
I slip another Fentanyl under my tongue, prepare my speech, and wait for a suitable victim. He hoves into view. About 30, badge of office – a stethoscope round his neck – probably feeling quite pleased with himself, and sorry for himself in equal measures, for is he not an overworked, underpaid junior Doctor? He is about to meet an irate Ms Raccoon in full Lady Bracknell mode. (Yes, I can still laugh at myself, but I’m damned if I’m going to let them know that.)
I stick my feet straight out in front of me, thus impeding his jaunty never meet their eyes progress down the corridor.
“Right, you! I am a terminally ill cancer patient who was supposed to be admitted 6 hours ago for medical attention. I am in severe pain. (OK, it was a lie, and I do not like to tell lies, but it was only a lie because I was self medicating…) YOU HAVE A DUTY OF CARE TOWARDS ME. GO AND FIND ME A HORIZONTAL SURFACE TO LIE ON, GET ME OUT OF THIS CHAIR, THEN WE CAN TALK ABOUT WHAT I NEED NEXT”.
He looks suitably horrified. I now have the attention of everyone within 100 yards. Heads are peering round every corner, thankful that this problem has not landed on their plate. I quite accept that he might well have been rushing down that corridor to find a tourniquet to save the life of someone bleeding to death – but I no longer care about others. I care about me.
He wisely decided not to apply words to the situation, but motions with his hands in a widely understood gesture, that I am not to explode for the next two minutes, he will get help.  A nurse appears at my side, mid to dark blue. Not too raddled then. She starts to spout some nonsense about me not having a wrist band. I give her a mouthful too. Never mind the wristband, find me a horizontal surface or a swear I will lie down on the floor and block the whole effing corridor. She starts on the standard speech about abusive behaviour towards NHS staff, and somehow the words dry in her mouth. It must be the glint in my eye. She can tell that I no longer give ‘a monkeys’. I am now a dangerous wild animal, beyond human courtesies.
She starts to wheel me into a side room, and moves to close the door – to a roar of ‘don’t you dare shut me in here, leave the door open where everyone can see me…..’ but she doesn’t need to shut the door because the junior oncologist has arrived. Wouldn’t you know it? The same one who had been summoned to slam morphine into me not 24 hours beforehand….her face bears the unmistakable imprint of ‘Oh God, not her again’…..I do actually struggle to suppress a giggle. This is no time to weaken. The two pump drivers (oh yes, they are still in my lap, quietly whirring away) have started to scream their message of ‘we’ve run out, someone do something’. I am content to let them speak for me. You lot deal with it, you’re the bloody hospital…
She examines me and concurs, yes, I should have had a bed hours ago. Magically, I jump the queue for the next bed in AMU. Yes, maybe someone did die of a heart attack as a result. I don’t care any more. I’ve done my bit of being reasonable. Mid-blue raddled creatures appear and change the pump drivers. I am horizontal, I am not in pain. No, I cannot have Fentanyl, only morphine has been prescribed for me. The very thing that has created the problem. Do I care? I have some in my pocket.
The bedside is empty, the curtains are half pulled. I slip another one under my tongue. I will not suffer more pain whilst it is in my control not to do so. I am spotted. A very alert and professional male staff nurse has seen me, and arrives post haste at the bedside. There is an unseemly tussle where we are both holding one end of the packet like a Christmas cracker…
He explains, and he is quite right, that this is a heavily controlled drug, and he will not have it on the loose in his acute ward overnight. A small part of me has slipped back into reasonable mode, and I agree. He will take control of the packet. It I need it, he will ensure I have it, he can see that it has been duly prescribed by the palliative care consultant, no matter what the ward computers say.  I trust him. God knows why, but I do. I fall asleep.
At 5am, my bed is surrounded by people once more. It seems I am on the move again in the giant Rubix cube that is this hospital. This requires a porter to move the bed. Since I am in a bed, not a chair, and the porter might leap on me and rape me in the lift, it requires a nurse to accompany him. Since the nurse is only a junior nurse as required for this purpose, and I also have a heavily controlled drug to be transferred, this requires a staff nurse to also accompany us and retain control of the drug…we progress through the eerily echoing 5am hospital in single file with the nurse pushing my wheelchair (patient’s own property) like a flipping medieval nativity play. You’d have been proud of me; I only sung ‘Onward Christian Soldiers’ inside my head, not a sound escaped my lips. God knows how many people waited for a bed pan whilst this charade played out.
I am slotted into an empty space on Mulbarton ward. Palliative care ward, the abandon hope department, where half the patients will never leave except in a box. The sound of the cardiac alert button and the consequent vanishing act of every single member of staff is a regular feature, as are the grieving relatives. I’ve been here before. Was it only last week?
The other half, mind you, are just starting the cancer journey, full of hope, chemotherapy, and skyped conversations with their five year olds explaining that Mummy may be bald right now but she is going to be fine. Our unifying factor is that we all have, will have, or have had, cancer. Those behind a flimsy curtain, thrilled to be told that they are in remission, feel just as inhibited in expressing their joy, knowing that it is being overheard by someone four foot away who has no hope of escaping the joys of this ward other than in a box, feels discussing their impending death bang next to someone who must hold onto hope. Can you imagine a young girl apologising to the rest of us for being overjoyed?
It must have made sense to the architects. No further comment.
I lay on that bed, staring at the ceiling, until 7.30am. I couldn’t straighten my leg, for the bed was piled high with my overnight bag, a bag containing soiled washing, my notes, a radio Mr G had left for me, er…..and the strip of heavily controlled pain killers which had been left conspicuously placed on top…..two and a half hours they had been there.
The drugs trolley arrived. I am ‘Nil by Mouth’ for no one knows what is likely to be in store for me. It attempts to pass me. ‘Whoa’! I say, holding the strip aloft. ‘Controlled drug’! ‘Recoiling Mongeese in the face of a rattlesnake’ time again. Ms Raccoon is finding small pockets of enjoyment in this life once more. More senior nurses are sent for to actually touch the pack and lock it away, naughty, naughty, patient….!
The most senior of senior, Lord High Gastro Expert of the Realm sweeps onto the ward, followed by his gaggle of ducklings with stethoscopes round their necks. Blimey, he has come to see me! Mrs Palliative Care Consultant does not muck around. God Bless her. She is determined that I shall die of cancer and nothing else. She has summoned him to see whether I can have the colostomy bag reinstated and save everyone a heap of trouble.  He runs through the list of places where I have cancer including my lungs, the long history of surgery by people who don’t even speak English (Tsk!), the fact that I am allergic to scanner contrast and they can’t even get a decent picture of what is going on inside me, all for the benefit of his ducklings and pronounces me unfit for surgery. I am not arguing with that, I am sure he is right. Pity he thinks I had a hysterectomy in 2011, I know and he should, that actually it was 43 years ago in 1973. Correcting him was never going to make any difference. He sweeps out again. I am neither complaining nor arguing with his decision.
I do actually feel rather guilty for presenting them with this insoluble problem and not having the decency to toddle off to the crematorium like wot I was supposed to.
The Palliative Care Doctor is off the premises for the next three days, I know not where and it is none of my business. She has not forgotten me however, and her registrar is by my bed two and three times a day, every twist and turn of the saga is relayed to me comprehensively, truthfully, and speedily. The registrar turns out to have just finished a Masters in Court of Protection matters and we have a lot of friends in common, and plenty to talk about. I like her more every time I see her. It is her and I against this bally hospital – I do not consent to die of anything other than cancer, I tell her. She agrees. They are still pumping steroids into me on an hourly basis, and stuff to stop me being sick, and Fentanyl – I no longer have to beg and plead for it.
The plan is to melt this obstruction from above, human drain cleaner, and keep me sufficiently sedated that I do not wreck this poxy hospital as it emerges below. Hey! It’s a plan. If it works, I can go home and die of cancer…I am positively excited by this prospect. There is a light at the end of the tunnel and it is not just the approaching train.
Slowly, slowly, the plan works. If it works again tomorrow, I can go home. Sink or Swim.
The Norwich and Norfolk have other devilish plans though…Are they not a hospital on black alert, with an overworked and underpaid staff of raddled angels, all the fault of the Tory cuts? repeat ad nauseum.
In the bed next to me, is an ex-community nurse of some 30 years standing.  I have no intention of identifying her publicly – but she is waiting for this post to appear. She is no fool, and understands her position precisely. She is in the middle of her first stab at chemotherapy. She has an infection. Unfortunately, (their favourite, favourite word) they have screwed up all her veins. They have no way of giving her intravenous antibiotics until a porto-cath has been fitted. Unfortunately, (yet again), she didn’t rise to the top of the operating list today, other more urgent cases (not to her!) have taken precedence. In the meantime, her core body temperature is so low, that every time her temperature spikes, she and her bed rattle ominously in unison like Marley’s Ghost locked in a football rattle. This doesn’t count as an emergency on the high drama of Mulbarton ward. There is nothing anybody can do except give her copious ice packs, leave the window wide open, and cover her with just a sheet – and rush off to the next crisis.
It is decided, by some computer deep in the hospital that organises this Rubix cube dance of the beds, that though she and I both have beds, there is nowhere to put them.  Other ‘very sick people’ (that they can do something about) need our bed space. Actually, they need to flip the entire bay from female to male, because the constant arrival of ambulances has overloaded the male to female ratio…..damn inconsiderate patients.
It is now 11,30 at night. The AOS room, which is but a day time treatment centre, has been cleared of treatment beds in preparation for the ‘deep ward cleaning crew’. Another computer has decided that on a time and motion basis it is more effective to carry out ward clearing between 11pm and 7am. You think I am joking?
At midnight, Wally One and Wally two as we have christened ourselves, on account of our husbands having to play ‘Find Wally’ every time they come to see us, are wheeled in state, along the corridor, and left in the empty AOS. They are not inhumane, the nurses. There are no windows in AOS, so they open the fan light to keep Wally Two cool. They replace her ice packs which have now melted in her bed. They turn a fan on her. They find four extra blankets for my bed. Like I said, they are not inhumane. You do not have to believe me, I have taken photographs, I have uploaded them onto this computer. I will not show you the one of Wally Two, she is entitled to her privacy. The rest of the pictures are here, and here, and here, and here, and here, and here, and here.
The gentleman who is cleaning, arrived just before 7am. We had seen no one since the night before. Yes, I know the deep cleaning gang had stripped the place 7 hours ago, but it is in his job description to clean the tops of the rails that the curtains hang on, and the computers. So he does. Yes, he was a little surprised to see us sitting up in bed there, and a little alarmed when I took pictures of him.  My companion had found two vomit bowls and a felt tip pen in the night and made us the two ‘Wally’ hats, one of which I am wearing. We patients cheer ourselves as and when we can.
Our next visitor, at 7.30am, was a representative of the Patient Advice and Liaison Service. (PALS) Carrying a sheaf of complaint forms. Someone somewhere had figured we might well want to make a complaint. We certainly had neither called them nor had any means of doing so. For the time being, we haven’t.
Wally Two is of a mind to do so, she says it will never get better unless complaints are made, but right now she is dealing with her own health. (She did indeed get her port at 3pm the following afternoon) She is now at home gathering her strength.
I am mindful of the fact that if it takes 45 minutes from ringing your bell, through first grade nurse, to second grade, to both of them standing together, to get access to pain relief – then take anybody out of the equation to stand and answer damn fool questions in HR in respect of a patient complaint for even twenty minutes, is only going to result in someone somewhere (and it might be me!) having to wait an hour and five minutes before they are out of pain….I can’t bring myself to do it.
Our next visitor was the most stunning of all. (Nah, not breakfast, nor the drugs trolley, don’t be daft!) It was a fully grown dark blue sister. She was expecting to see a row of six treatment beds, and start her days work with a queue that even then was forming behind her. These are not people coming in to have their toenails cut. These are desperately sick and vulnerable people arriving for blood transfusions (first patient) and other similar treatments associated with Haematology and Oncology.
In a split second she summed up the situation. She pulled a curtain round us. She dragged three treatment beds into the remaining space, and that woman performed the most incredible act of professionalism on auto-pilot I have ever witnessed. Wally Two and I sat behind the curtain open mouthed. There was never an inflection in her voice, or a falter in her step; patient confidentiality flew out the window, or would have done if there had been any windows – it had to settle for the fanlight. Every patient was greeted and treated as though they were her best friend, and all the time, she knew that two totally unknown quantities from God knows where, were behind that curtain and could have burst forth at any moment. She even found time to help the secretary behind the bank of computers decipher medical notes from the day before. She did, slightly worryingly, tell one patient that he was lucky he wasn’t in America and had the NHS to rely on. Wally two and I looked at each other in amazement – could she be on pot? It had to be auto-pilot. It is the only explanation.
She deserves every medal, gong, and award going.
Bu**er me, the NHS do not deserve staff like that.
They were not finished with us yet. At 9am or so, there was a slight break in the queue, and two nurses arrived to wheel us out. More ceilings pass at high speed, and we were slotted into two new spaces. Just in time to meet the drugs trolley coming round. ‘Allo Patricia, I am ‘x’ your nurse for the day, and I have’ – she reels off a list of medicine I have never heard of that she is advancing towards me with. Why is she calling me Patricia? I spin my head round and look at the board over my head. Sure enough it says I am Patricia W****. (I do have the full name) I am not Patricia W, I say. and Wally Two spins her head round and discovers she is supposed to be Agnes or something, I don’t remember. We have been slotted into two different patients spaces. Poor sods had probably only popped down for an x-ray or summit, but there are only the quick and the dead in this chaos….
I know if I make a complaint, they will quote me chapter and verse of how they would have checked my wristband according to regulation 1028/349 before chucking those drugs down me…probably….but I thank my lucky stars that I can both think and speak…..and write….
The Palliative Care Registrar arrives during this scenario, she tells me that she is going to get me home, that she has just issued the order for the two drivers to be removed, and for the drugs to be made up for me orally. As she is sitting there….
Not one, not two, not three but FOUR staff nurses arrive simultaneously at my bed. Even the other patients are goggle eyed. Who knew this ward could field four at once? Or even the entire hospital could field four at once? Two have arrived because the computer he tell them that my drugs have run out in the drivers…actually best part of an hour ago…..and the other two have arrived because the registrar has just issued instructions to get the drivers out of me and let me out of this madhouse. We despatch the first two, and settle for the second two. Even the registrar is laughing now. Wally Two is taken down to theatre. She will spend the rest of the day down there, waiting, waiting, waiting…..
I have no money, only a hospital nightgown to wear, and no transport. I care not. Get me out of there. Mr G is still doing battle with Anglia Water….they arrange an ambulance, and I am decanted back to our lovely cottage by the river. Phew!
You think it ended there? Nah, the long arm of the NHS was still reaching out to poke me.
Next morning, after waking beside Mr G and listening to the shipping forecast over a cup of tea….I decide I would love a bath. Normality. Mr G needs to go and buy food suitable for my new restricted diet. A bath is something I can do for myself. I run a bath. I lower myself into it. It was bloody wonderful. So wonderful that I decide to wash my hair. I can’t reach the shampoo, but a bar of soap will do. I hook my toe under the tap and drag myself under water, rise and apply soap, rinse under water and push myself back into a sitting position by pushing my toe against the end of the bath.
It was just the exercise that my poor benighted bowel had been begging for. Three weeks of pent up faeces broke forth, and I was sitting in a dark brown bath, with a floor like an olympic skating rink….told you this wouldn’t be pretty, didn’t I?
This is a predicament that takes true grit to extricate yourself from. I used everything within reach to give myself purchase to stand up. I hosed down my right leg, put it outside the bath, hosed down my left leg, sod getting dry, I crawled over the bed covered in towels, and pondered my next move. The exertion meant I could scarcely breath. It could be an hour before G returned.
Ring the District nurses? Ask them? That was the right thing to do. They were understanding and reassuring. (They always are) Norfolk Health Trust have a team called Swifts designed for just such a predicament, in fact I didn’t even need to phone them, they were in view in the District nurses hub at exactly that moment, hold the line……and they would be with me within half an hour…..but they weren’t. They arrived, according to this document, at 10.50. No matter. The delay was because they were consulting with their managers.
They snapped on their rubber gloves, and enquired where I needed washing. ‘No’, I explained, I had managed to look after myself, but the bathroom looked like an IRA dirty protest in the Maze and was beyond my capabilities. That is seemed was a problem. They were empowered to clean any amount of shit off me, but if it was 15cm away from me, let alone 15 foot, then I had to have a complete care package with domestic help which I (me, I’m the bloody patient!) could arrange on Monday. I pointed out that I was the patient, it was not my responsibility to care for me, and would they please have their demarcation dispute with the District Nurses who had called them in…I even phoned them and handed over the phone.
For the next half hour ‘District Nurses Hub Manager’ did battle with ‘Swift Hub Manager’ as I remained stuck in a turf war – or should that be Turd war?As you can see from the report, someone was bandying around the Duty of Care phrase….until finally (last sentence) they agreed to clean the bathroom this once ‘as a gesture of goodwill’ which is too, too good of you, you inhumane jobsworths, if it happens again, I shall make sure that every last centimetre of it is about my person……
I meanwhile, was collapsing in fits of giggles, and as documented in that report, ‘the patient said – “she never knew dying could be so much fun”……they even argued over whether the ‘patients comments’ should be included. Too damn right they should be.
Now this post, which already runs to 8,000 words, is primarily for the benefit of those whom I have shared hospital space with over the past three weeks, some of whom are waiting for ‘back-up’ of their own complaints…but it is also a riposte to those who have taken objection to my defending Susan and attacking those who would treat her as their latest plaything. She is in worse shape than I am, and yes, I do feel strongly that now is not the time to start airing your views, particularly not on the paper thin excuse that ‘it is evidence’ and you ‘are entitled’ to talk about evidence and name her in the process…..because Miss C also gave contradictory evidence in that case and I note that no one is in a hurry to find themselves in contempt of court for naming her – ipso it is perfectly possible to discuss whatever you want to discuss without drawing attention to Susan’s full name. Especially not four months after the bloody book appeared.
Last night I fell asleep at 8pm. I woke again around midnight to the following exchange. (sent at 10.55)
Sue – is there any particular reason why my comment is awaiting moderation? It’s all about the truth – isn’t it?  People can judge for themselves.  No fear or favour.
As you yourself believe.
best
Margaret
Five minutes later, she had grown tired of my tardy response, and put this on Twitter.

Well, that’s telling me, how dare I sleep through her demands!

Humble apologies – fearless freespeaking Raccoon not able to stay awake 24 hrs a day to suit yr impatience. Your sarcasm is unwise Madam. https://t.co/7QkW5zr1HT
— Anna Raccoon (@AnnaRaccoon1) November 16, 2016

I also replied by e-mail. God knows why I was wasting any time on this.
Indeed. Susan’s surname will not form part of any discussion on this blog.
It may seem an insignificant point to you – but on this blog she will be accorded the same respect for privacy as Miss ‘C’. Under her present circumstances, that will be rigidly adhered to.
As is my husband’s surname which I am proud to carry under normal circumstances but not in discussions concerning whether I am or not a paedophile defender, an MI5 agent, a transgendered witch, or ‘who stuck their prick where’.
***** and ***** are two words that will forever trigger moderation and editing where required.
I cannot stay awake 24 hours a day. My medication times are 8pm 12am 4am and 8am 12pm and 4pm. Fentanyl 100 is not morphine it is akin to Heroin. You may reasonably expect me to be asleep until an hour or so before the next dose.
You may wish to use this schedule to judge accordingly whether a comment using Susan’s surname or my husband’s surname is in moderation because I am a censoring two faced bitch who deserves any amount of sarcasm and public humiliation, or a woman drugged by medication for whom you should wait patiently until she checks her site again.
If you wish to use asterisks to replace Susan’s surname, and only one link per comment, you will find that your comment does not trigger the moderation alarm.
Anna
Do I sound every so slightly testy? I do hope so. There was much more of the exchange on view; Susan is described as the ‘Sacred’ Susan, and I go back to bed.
A final exchange of e-mails is received from Ms Jervis.
What’s up Sue – this is ridiculous.  The evidence is re ‘xxxxs’ reliability – which frankly is not that  great and you should realise that.
It’s the fact that you don’t want to recognise this  that has driven this tirade .
Face it – you are better than your pride.
I have always defended you. Because of the quality of your work.  But the last blog was not what you would wish to be seen as I think , though of course it’s all a minority sport.  I can only think it was the Fentanyl.
m
I respond.
You are welcome to think whatever you please. I have no interest in what you think.
Susan was not a great witness for either side since she spoke the truth and it was inconvenient for both sides. 
Miss “C; was not a great witness for either side since she merely reluctantly agreed that her evidence might or might not be relevant to the date in question. 
Why don’t you name her too – oh I forget, she was a protected witness, contempt of court and end of legal career. 
Seems your desire for ‘the truth’ ain’t that hot either. Quite happy to suppress it when it suits you. 
Only the easy targets. 
Keep going Margaret. It is so important to be right, to be right, to be right……
I hope you never live in our shoes. 
I can speak, I can write. Susan can’t. 
I no longer have any pride – as you will find out tomorrow when I have finished writing. 
I have a great desire to protect Susan. 
Can’t you wait until she is dead? 
Obviously not. 
Anna 
The response was a corker…..
Sue – I don’t know and have not interest in ‘Miss C’
Was merely commenting on the evidence on its own terms – disinterestly.
Susan’s welfare is another matter.  She put herself up as a witness and I’m merely commenting.  As you and others might quite properly and have done.  As I have always maintained (as a victim myself who reported  a serious matter at gunpoint in Turkey) all you can do is tell the truth, report and the rest is not your business.  Which is why I’m not concerned about the ‘belief’ issue – irritating as it might be.
Health matters are another matter.  I don’t know why you are Susan’s ‘protector’ when she is clearly unreliable as to Duncroft et al
And we are all dying. It’s part of life..
Oh, you are so, so right, Ducky. We are all dying every last one of us. Some of you are at the back of the queue, sitting in your comfortable homes, pounding your computers later at night……some of us are at the pointy end of dying, the sharp end, where the dying pole is greasy, hung out over a crevasse, and we are clinging to the sharp end for dear life…….
And funnily enough, it gives us a totally different vantage point to look back at the rest of the world, and decide what is really important, and who is really important. Gordon Exall wrote a good piece on the subject of Kat’s book, and how unusual it was to hear about the judicial process from the view of someone who has been mangled by the process. I have always had a lot of sympathy for Kat.
It is also unusual to hear from someone on the pointy end of the dying pole – someone said to me last week that I had been knocking on Death’s door twice in a week – and I tartly responded (‘cos tartly is the only language I speak of late) that actually the bastard had been knocking on my door – and I’d told him to eff off….
I may or may not continue tomorrow to answer some of Owen’s questions. Depends whether the world turns, whether the sun rises, whether the tide goes out……or whether I can be bothered.
There’s a lot more to come out.
Can’t be arsed to proof read. Have it as it is.

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