The Plattitude

Hiya everyone,

Another strange British superstition which was passed on to me by my mum, along with the thing about magpies, black cats and ladders.  But the title of this post when uttered before any other word on the first day of each month bestows upon you good fortune for the rest of that month.  I have secretly been mumbling this bonkers phrase for some months now and I will stand beside myself in amazement if it doesn’t seem to be working!  Here we are at the end of another month and I’m still here!  Delighted I am too as I have had yet another very pleasant day.  When Louise commented that she didn’t know how I was doing it, I told her that she was primarily responsible and also referred her to yesterday’s post.

The first wonderful event of the day was that the man I went to see about the Wallabies actually had some this time, therefore I was considerably more comfortable than I was yesterday!

After lunch, Granny Rosie took Oscar for a walk for a few hours and as my mum has gone home for the day, Louisa and I had a bit of time to ourselves.  We decided to spend it having a cheeky Saturday afternoon drink and putting together the photograph album I am leaving for Oscar.  It’s a fun thing to do, whittling down one’s life into 48 pages or whatever it is and quite surprising how many 6 x 4 inch sheet of paper you can throw away (having insisted for the previous seven house moves that you absolutely cannot do without them!).  We are assembling Oscar’s album so that it reads as his own, so Louise’s mum is called Granny Rosie, my brother is uncle Matthew and so on.  I hope that this helps Oscar to take ownership of his family history as well as paint a fuller picture, albeit somewhat dubious in places, of me.

We also chatted about my funeral for a while, trying to decide on numbers, venue for the inevitable piss-up afterwards and whether or not I should be in the buff in the box (I’m a little worried about ruining a perfectly serviceable tailored suit!)  I do find organising the biggest event in my life, that I won’t be attending in the fullest sense of the word, brilliantly entertaining.  If you are coming and end up standing outside somewhere because I guessed the numbers wrong, quite frankly my dear I won’t give a damn!  I’ve bought you your first half of Tetley’s and a quarter of a ham salad bap, what do you want from me!

When Oscar returned from his walk, he rapidly destroyed the quiet musings of his parents by emptying his toy boxes and bookcases into every corner of the living room whilst spouting another dozen new words.  Brilliant.  Especially when he and his mum were hiding under the blanket playing peepo-daddy!

Here I will leave you all to embark upon the journey through the minefield of bad taste that is Saturday night TV.  Have fun!

Lots of love,

Neil x

Good afternoon all,

I am speaking to you directly via the computer today, so hopefully there will be fewer interruptions and less backchat than when I use the wife/typist!  She’s a good girl really and she is right about the tsunamis that occur occasionally in the otherwise still waters of our relationship caused by the current predicament.  I will however leave it to Louise to tell you about these as I feel she is far better placed to do so, also if I tell you then every dispute will obviously be her fault!

I thought I’d tell you a bit about my last few hours at the hospice and my homecoming of yesterday.  Before I do that, I would like to say an enormous thank you to all the staff who took care of me at St Michael’s.  Of course I have my favourites but it would be unfair to name them, besides they know who they are!  Whilst people may wonder how I tolerate the washing, the toileting, the feeding and the dressing, I could not ever be the one to give such cares, day in and day out, to terminally ill people and not become emotionally shattered.  But not these nurses; they are professional, kind and act as emotional punch bags for people such as myself and come back to work the next day, every day.

After a morning spent sleeping, Louise arrived with my brother and friends, Simon and Rhona, to swiftly pack up my room.  Until this point all I felt was tired.  Then the ambulance arrived and I was hoisted onto a stretcher and strapped in.  It was only then that it hit me, I was going home.  The tears welled up as I was pushed past the first member of staff, however I managed to hold them back.  It was only as I was pushed through the front doors and I scrunched up my eyes against a brilliant blue sky that they began to flow freely down my face.  This continued until the ambulance stopped outside our house.  Then began the series of shenanigans which culminated in my being settled in my armchair in its usual place in the front room.  After the dust had settled, about 20 minutes later, my emotions got the better of me as I surveyed the familiar surroundings which felt so distant just hours earlier.  However, Louise put paid to my behaviour by mopping my face with a tissue and pointing out my boy cavorting in the background.  You know the rest.

Strangely, throughout the above I had a craving for my wife’s spaghetti carbonara.  It is undoubtedly the best in my world and probably yours too.  A bit of a daft thing to crave as I can’t have spaghetti unless it is chopped up, and even if it is the cheese will stick to my throat and try to choke me!

So, I’ll leave it there, as I sit in my profiling chair, cantilevered table hovering over my legs and on which sits my laptop and microphone.  I feel a bit like Captain Kirk!

Much love,

Neil x

Hello everybody,

It has been another slow day at the office following an even slower wake up this morning.  But they did manage to squeeze me in another bath which certainly left me feeling clean if only slightly more awake.  Louise and I tried to make the most of what will inevitably be the last of our truly private time before my return home tomorrow.

As the title suggests, my taxi/ambulance is booked to take me home at two o’clock tomorrow.  With this booking comes mixed feelings.  I am somewhat relieved to be going home at all after embarking on my little holiday with part of me feeling like I had got a one-way ticket.  Excitement features largely at the prospect of being able to spend most of my time with Louise and Oscar without someone having to get in the car or being limited by Oscar’s dinner or bathtime.  Throughout the course of my stay, my times of greatest upset have been caused by the departure of one or the other, usually both.  The sight of either leaving sparks memories of the first extremely happy few months after Oscar was born, or reflect on what I have missed or been unable to deliver as a husband or father because of MND, or ponder on their future.  Louise told me that Oscar is still running down the hallway to my bedroom shouting “da-da” and I can’t wait to be back to see it.

But I have been at the hospice for two weeks under the care of their professional staff.  My return home means trying to organise our merry band of carers, calling on family and friends who willingly sacrifice days, even weeks, to fill in slots of time on our kitchen calendar.

Still, despite the emotional rollercoaster which seems to move ever faster, I can’t wait to be home.  The next time I write to you, it will be from my chair, in my front room, whilst watching Oscar play and Louise feeding me grapes (well maybe not grapes because they make me choke).

Until then, much love,

Neil x

Hello all,

That’s right, I’m clean again following yet another wonderful bath.  Nothing to report on that front save to say that Louise and I had another chance to talk a little more.  Talking of Louise, she is as we speak on her way to Scotland with Oscar.  The purpose of their visit is to have a look at a cottage she has seen in a small village in Fife with a view to buying it as the first stepping stone into her and Oscar’s future.  Now it was suggested to me today that this would be difficult for me to stomach.  My response to this is simply that I would much rather know where my little family is heading, so I may be secure in that knowledge when the time comes, than not and have to worry and wonder.  But each to their own and answers on a postcard.

The plain speaking was done between myself and a very amiable Consultant in Palliative Care regarding exactly what we intend to do in the immediate future.  My advance directive sets out my own requirements, however these are not finite and may be subject to change.  Due to the fact that my swallow is already affected and my speech is not, my advance directive is already applicable if I wish.  Due to the advanced nature of my condition it seems unlikely that I may be fed artificially, although consultant is to confirm this.  Therefore  I am faced with a number of options.  I can choose to go any time I please under the terms of the advance directive and also because I can physically tell the doctors so.  An alternative is to remain on the ventilator and receive fluids artificially thus giving me additional time to continue participating as I have done until either my speech fails or I succumb to the lack of food.  Another alternative is that I contract an infection which makes the above two rather irrelevant.  There are others but all equally difficult.  I had decided for the moment to jump off this particular bridge when, and absolutely not before, I have to.

But, having said all of the above I am of good cheer considering the fact that we are officially in a recession and I think I’m about to be subjected to Coronation Street again!

Oh and by the way, the interview last night seemed to go pretty well.  I’ll let you know when you can all rush out and buy a newspaper.

All my love,

Neil x