#Corrie #righttodie

Yesterday the Brompton called to tell us the procedure would have to be postponed. No bed available. There we were, all packed up and ready to to roll. Still, we'll get over it. It's a shame as Roch was all psyched up but in a funny way it feels like a reprieve. Another week PEG free. 

So we were at home together to watch as Corrie's Hayley Cropper took her own life and in doing so, sparked a long overdue public debate about Assisted Dying. Julie Hesmondhaigh and David Nelison as the dying Hayley and her loving partner Roy were incredibly moving and their story must have resonated for countless people watching, as it did for me and Roch.

Did you read the article in The Sunday Express the other day? It made me so mad - the reporter was either shockingly  ill informed or wrote a deliberately misleading article on the issue. Yes there are two sides to the debate and I am willing to listen to your side but only if your arguments are based on the facts. A change in the law will not lead to eventual euthanasia, it will protect vulnerable people. The proposed changes would allow people who are dying the right to choose how and when they die. Assisted Dying is for terminally ill people only, someone who had a disability and wanted to die would not be eligible to request an assisted death. Get your facts straight Daily Express and stop scaremongering! 

Last night twitter was filled with comments on Corrie and sympathy for the fictional Roy. Here is what Roch - a real person -  has to say, published online last night to coincide with the airing of the episode.

http://www.independent.co.uk/voices/comment/as-someone-with-motor-neurone-disease-i-hope-tonights-coronation-street-helps-to-change-the-law-on-assisted-dying-9072836.html

Corrie, Assisted Dying and The Sun surprises

Are you watching Coronation Street? If so, you will be familiar with the Roy and Hayley storyline. We're not really into Soaps, but we used to watch Coronation Street all the time. One day we just stopped - years ago - and never missed it. But we're back in the Rovers Return again, watching the Roy and Hayley story unfold as the programme has chosen to run with a storyline which involves an  issue close to our hearts.
Hayley is dying of cancer. She is an adult, of sound mind, terminally ill and her death is imminent. Should she have a choice about the time and manner of her death? Well, 73% of The Sun's readers think so. The Sun newspaper ran a poll of its readers and published the results on 14th January. I  have copied in the relevant page from The Dignity in Dying website below for a full report but please feel free to visit the website yourself, to read the personal stories of their supporters and the statements of support from their many eminent Patrons.
http://www.dignityindying.org.uk/about-us/




As you know from previous blog posts, Roch and I back the campaign led by Dignity in Dying and support a change in the law which would allow terminally ill adults who are proved to be of sound mind, a choice about how and when they die.
Yesterday Roch was interviewed by a journalist from The Express and once again posed for photographs. He wants his own story to be told to illustrate why a change in the law would give him peace of mind and we both hope that this will help and support the campaign for Assisted Dying.
Here is the full report from the Dignity in Dying website:

"The Sun backs Assisted Dying Bill

By David Pearce

Today The Sun, Britain’s most popular newspaper, expressed its support for a change in the law on assisted dying. The Sun says:

“Lord Falconer’s Bill would ensure terminally-ill patients prove they are mentally capable of choosing death, that they have “settled” on their decision and that they have not been influenced by others.
“These are sound safeguards.”
“The risks of legalisation seem tiny to us compared with the suffering it would ease.”

This editorial by The Sun comes following a survey conducted by YouGuv, which showed that 73 percent believe that terminally, mentally competent adults should be allowed to control the manner and timing of their death. This is in line with the safeguards set out in Lord Falconer’s Assisted Dying Bill.
The Sun was prompted to survey its readers by the Coronation Street plot about Hayley Cropper. Last year Hayley, played by Julie Hesmondhalgh, was diagnosed with terminal pancreatic cancer and as her condition progresses decides she wants to be able to control her death.

A difficult subject needs to be handled with care

Producers of Coronation Street have faced some criticism for creating the possibility of “copycat deaths”. It is important though to distinguish between assisted death – where a dying person controls the end of their life in the knowledge that their death is inevitable – and when someone takes their own life for other reasons, such as depression. Coronation Street’s producers have consulted with The Samaritans, who understandably advised against providing details of exactly which medication was involved or how the drugs where obtained.
Coronation Street producer, Stuart Blackburn, touched on the sensitivities of such an emotive issue in The Daily Mail, he said:
“This is a very sensitive issue and we will be exploring the effects of her decision on husband Roy who has a huge emotional and moral dilemma over her choice to die this way.
“Not everyone will feel Hayley’s decision is the right one and we fully respect this.”
“For that reason we will be exploring both sides of the debate on screen.” "


Roch and I will be watching with interest.

The Monkey and The PEG

Well, we have a date for the PEG now and after all the waiting it feels like it's come upon us all too soon. Monday. He will be in hospital for four days but this is largely for monitoring and observation. 

It's sensible to plan ahead. We've planned ahead successfully all along so far and I'm doing my best to approach this in a pragmatic way. It's for the best, it's a routine procedure and yet it feels like a marker for a new phase of the disease. The monkey's prehensile grip grows ever stronger. 

Plans for the Day

Roch is getting more used to the nippy at night and he can take the mask off now by himself if he needs too. I find I can drop off to sleep with the noise, no problem, but if I wake in the night, it's hard to get back to sleep. The other night I had to take refuge upstairs on the futon in our old room. When this happens, I know I am just a text away. Last  night, my sleep was broken, but I dozed off again each time I woke up. We went to bed too late anyway, as Tom is home for a few days before term time lectures begin in earnest and we were all excited to have him back, even though he's only been gone just over a week! It's good to be all together again.

This morning I am somewhat bleary eyed but Jenny is coming for the day and Roch  is meeting an old friend for lunch. Kate and I are off now for a few hours' shopping and later  I will see my counsellor but already I'm looking forward to taking a nap when I get back...

"Be where you are"

We have been expecting a date from The Royal Brompton for Roch's PEG operation. The doctor indicated that it would be sooner rather than later and in fact suggested at the time (early December) that if we were given a date before Christmas we could ask that it be deferred until the New Year. So I was getting uneasy that we hadn't  heard anything yet. Well, good thing we thought to check. When we called the hospital today we discovered that although the doctor had referred Roch for surgery, the coordinator hadn't picked it up and scheduled it yet. I spoke to a member of the  medical team and we had a call not long after from the coordinator. We are told that he is going on the list today and his surgery should take place within the next few weeks. It's frustrating as we'd really like to plan ahead and it does feel as if we've been overlooked. 

He's still feeling fatigued during the day although he's using the nippy all night now and for part of the day. Today he felt quite breathless when he was sitting down on the shower seat and I was drying him off. The breathlessness dissipated once he was standing up in the hoist and after, when he was using the rollator to move to his chair. So that's a bit different. 

January is such a dull month and can make me feel melancholy but I'm trying to be positive and notice the beauty of winter, taking pleasure in the little things. The garden is absolutely sodden but I'm just going to enjoy looking out the window at it for the moment. No pressure to do much gardening in winter. Before Christmas I invested in a squirrel-proof bird feeder and it works! Every couple of days I replenish the supply knowing those pesky animals wont be able to poach any. The birds are hungry.

Today I made a pot of tea in my lovely Polish pottery teapot. It has such a pretty pouring spout, although the rim of the pot is chipped. Seeing the scented steam rise as I poured the tea was a real pleasure. 

Later I walked through the rain-soaked streets at dusk to do some grocery shopping and stopped to notice the pale moon in a patch of clear sky, framed by  bare wintry branches. 

“As you walk and eat and travel, be where you are. Otherwise you will miss most of your life.” ~ Buddha

“The longer we dwell on our misfortunes, the greater is their power to harm us.” ~ Voltaire

Community Matron comes up trumps

I may have mentioned that over the past six months or so, it's become increasingly difficult for Roch to pee standing up. We mentioned this to our Occupational Therapist and she asked Medequip  to fit a grab rail on the wall beside the bio bidet in the wet room. It seems that communication isn't their strong point. The first guy arrived, had a look and told us that it would be impossible to fit a grab rail there because the old kitchen pipes were behind that wall. He shook his head sadly and headed off. A number of his colleagues followed - six in all - and one day we were treated to three visits in total. At first, each time I thought 'Great, they're sending someone else with new tools and he'll be able to do it.' Eventually I just gave up and asked them to stop coming as each guy said exactly the same thing! To be fair there was one point where my hopes rose again as one of them carried a big bag of tools in and took a look at the wall behind the bio bidet - but no, it appears that it's a 'stud' wall so not possible.
Meanwhile attempting to pee standing up at the toilet was, in my view just becoming too risky. Roch was determined to continue to try but leaning forward, knees against the toilet bowl and one hand flailing out in an attempt to grab the windowsill did not strike me as a good way forward.
Our Community Matron, Jo Lambert to the rescue!
Roch can still make his way slowly round downstairs with 'Old Roll-ee' and so Jo fashioned (no other word will do) a stylish holder for a pee bottle. This is now suspended from the grab rail in the sitting room. She even - wait for it - designed it with our colour scheme in mind! This is innovative thinking at its best. Roch can hold onto the grab rail with both hands either side of the bottle holder and is perfectly secure.
She really should patent it - I had wanted to post some photos of the new pissing device, but 'blogger' has let me down and after several attempts, I give up. Maybe next time.
Anyway,  I swear that woman has an answer for every problem and if she doesn't she'll sit and listen to you anyway with great patience and empathy. A valuable member of Team Roch. Thanks Jo!

Just another Day

I had a really bad night last night while Roch slept like a baby downstairs! (Perhaps it's me keeping him awake?) At one point I woke from a nightmare where some old dude was stubbing his cigarette out on my neck. My friend and colleague LB wondered if it meant I was feeling overwhelmed and 'used'. Good theory. Not sure. Hope not. 

Anyway when my alarm went off at 6am I was in no mood for rising but work is work so off I went. There was no traffic so I got there by 7.15am for my 7.30am shift. The morning gradually got busier and my head got heavier. I greeted lunchbreak like a long lost friend but back at my desk at 2.00pm I was definitely lagging and my head was in protest again. But I made it through to the end of my shift, bade farewell to my lovely colleagues and stopped off in Tesco on my way home. I emerged from the store (clutching two Erdinger for you know who) and then spent ten minutes looking for the car. Not good to mislay the car. Eventually found it by chance (Really? Really? So did not remember parking it there...) and so back home to the welcoming smiles of the man himself and our Kate, tea and toast and nap time. I can now lie down in the knowledge that Kate can take care of Roch's needs in my absence.

She has recently been initiated into the mysteries of assisting her Dad to go to the toilet. This has not been easy for either of them I would guess but I am so proud of them both. She goes about the job with a practicality and tenderness that does her credit and he accepts her help with dignity and good humoured grace. 

Tom has been performing this personal task for some time now (and all credit to the lad) but since his departure for the heady delights of third level education, Roch has had to overcome the very natural reluctance of a father in accepting his daughter's help in the bathroom. It's another obstacle overcome and a personal challenge met, although one which I'm sure he would not have chosen to face. 

I take some advice from Hemingway

2014 has seen the introduction of the nippy at night. From my point of view, it’s pretty noisy but I’ve managed to sleep pretty well most nights so far, thanks for asking! Poor Roch dreaded having it on at night.  He didn’t keep it on all night at first, bearing it up to 4am or 5am, when he would ask me to remove it. Last night we tried something different, as I had had a migraine and needed a good night’s sleep to see it off completely. Kate and I set the nippy up on the hospital table over the bed within easy reach. Roch made sure he could press the button to turn it off – he can take the mask off by himself. Armed with Kindle, I-Phone, I-Pad and environmental control I-Phone, we left him alone. Kate was on call but Roch slept right through until 7.30am, nippy on. He reports that although he still felt tired, his mood was better during the day. Time will tell. The important thing is for him to get used to having it on at night. I slept like a baby upstairs. We are going to try the same thing tonight, as I have an early start for work tomorrow, but then I’ll go back to the marital bed and see if I can sleep through when he doesn’t need the mask to be removed during the night.

That bed has been moved downstairs, raised, shifted into a different position in the room, had a bedrail and extra mattress added (after several different types were trialled) with the addition of a sliding sheet – we are trying everything to hang onto it for as long as we can. The monkey has so far failed to dislodge me, although I now occupy a smaller space due to the smaller extra mattress on top of our own mattress and frequently wake up to find myself sliding out onto the floor!

So, 2014 – who would have thought we’d make it this far? So many milestones have been passed, so many losses mourned since June 2009. We don’t have a date yet for the PEG operation but I’ll keep you posted.

As time goes on I find I am less accepting of what has happened to Roch and feeling angrier. Less tolerant and more impatient with people who really don’t ‘get it’. More fragile, but more empathic to other people’s suffering and loss. I find it more difficult to come to the blog page and guiltier about my absence.

I thought I would share with you an unedited extract from my daily writing journal (unedited apart from insert in bold) – a peek into the stuff that doesn't make it into the blog. But maybe it should.

As Hemingway said, "Write hard and fast about what hurts."

“Why do I half do things? And spend so much time on stuff that doesn’t matter? Or well now maybe it matters to me. Here I am trying, trying to get some stuff out of my head and down on the page so that ‘ideas flood in’. Have spent so much time reading about writing, too much time on twitter today – my eyes hurt. How to motivate myself and get through writer’s block; I could – let’s see, clear the clutter, go for a walk, have a shower (I need one), put on some lipstick, make a big pot of tea and pretend to be Virgina Woolf or Ernest Hemingway and write (actually that’s great advice courtesy of @LauraPepWu and I intend to follow it). If it was Ernest Hemingway it would probably be more like a bottle of whiskey, but I get the idea. Am I wasting time up here while Roch is downstairs with Jenny to look after him? Probably should have been trying to write hours ago. I need some space in my head! Of course now I haven’t eaten too much in the past two days so my digestive system will be out of kilter. Moan groan shout roar scream kick up and make merry hell. Feeling like shouting or destroying something, smashing a plate or yelling at the top of my voice. I’m such a good girl, always doing the right thing, in control of myself. What would it feel like to let go? Lamp someone, (see, I like the word but I wouldn’t want to actually hurt anyone deliberately – why? Because there would be consequences? Or because I wouldn’t actually want to hurt anyone? Hmm…)

Knuckles connecting with bone and flesh – crrrunch!! Beat the monkey to death maybe – there’s a fantasy worth having. Fur and blood flying, sticking to the surface of the wooden bat. Fucking monkey, taking my life away (and Roch’s of course). Fed up trying to list all the things in my life to be grateful for – that’s what they tell you to do. I know there are so many things to be grateful for but such a lot sucks! I am allowed to rail against it!! Now, if I could blog every day for 15 minutes – would that help? That couldn’t be too hard, right? HA! HA HA HA HA HA HA HA HA HAAAAAAAA FUCK IT! YOU’LL NEVER DO IT! No? Who sez? Me, I say. Me, your inner voice of truth and despair. Listen and weep. For you will never amount to anything in this world --------------Oh shut the fuck up I’ll give it a try.”

Fifteen minutes every day, it can’t be that hard, can it?