Time at the bar ladies and gentlemen..

… well to be completely frank, we are probably well into our metaphorical 20 minutes drinking up time.

Hello everybody,

Keeping with my pub theme, the title of this post occurred the second I started using a ventilator 24 hours a day. Without such intervention, The pub would have been closed and sold to a developer to make way for another “all bar one” months ago. The ventilator is allowing us to finish our drinks at a leisurely pace, but today has indicated to me just how close I am to kicking out time.

As Louise told you in last night’s lyrical delight, yesterday was a bad day. Today, has been considerably worse. Being able to consume a tin of tapioca and some egg custard yesterday seems today akin to my jumping out of my chair and doing laps of the garden. I have choked at the introduction of just about any liquid, let alone food. The thinner the liquid or the claggier the food, the more I choke on it.

My inability to swallow now seems to be permanent. This realisation came on a flood of tears, my own and those of my wife and brother. The combination of choking, being upset and writing the blog have left me exhausted to the point where I have not been able to get out of bed. Instead, I lay staring at my new artificial night sky and thinking about how close I am to reaching criteria set out in my Advanced Directive, and my final visit to the hospice.

Our incredibly helpful District Nurse, Liz, has come up with all manner of solutions. She has suggested that I have a syringe driver fitted in order to overcome the need for oral medication. She has also considered sub-cutanious fluids to prevent my dehydration. We also reviewed the possibility of going into the hospice for a while. It may interest you to know my thoughts on the above, as discussed this afternoon in the presence of Louise, Matthew and Liz; I was my usual bullheaded self, without interruption, at every potential solution-so first I apologise to all present, their efforts are hugely appreciated.

My view is that if I can no longer swallow any medication, nor can I consume any food or drink. At this junction, I have requested the provision of IV fluids to prevent dehydration. My Advanced Directive states, and this holds true today, that I will not accept any artificial forms of nourishment. The reason for this is that it is highly likely that my inability to swallow will be rapidly followed by an inability to form understandable words. It is my ability to fully participate, as far as my physical disability allows, that defines my quality of life. The inability to speak would drag that quality to a level which I could never tolerate. As soon as my speech becomes unintelligible, I will accept the offer of the hospice-this visit, unlike the first but similar to the last, will be for the purposes of switching off the ventilator as required by my Advanced Directive. In the meantime, swallow intact or not, until my speech leaves me I want nothing more than to be with my family and friends.

I have no idea how much time I have left, nor any idea of how many times Louise is going to have to act as typist. Until then, it is my intention to carry on doing what we do to the best of my ability.

I will try to upload footage of Oscar tomorrow, hopefully on the back of a day less bleak in it’s outlook.

All my love to every one of my family’s supporters, wherever you are.

Neil x

47 Responses to “Time at the bar ladies and gentlemen..”


  • We’re all with you, Neil. Every one of us. A part of me wants to say, “Any chance of a lock in?”. And you’d likely end up carrying me out of the pub, as you did on my Stag night.

    We all love you, mate. Be strong and continue to show the rest of us how to be as strong.

    All our love,

    B&G

  • Neil, there seems little else to meaningfully say at this moment, other than that we will always be here for Louise and Oscar, and indeed for your good self should you see fit to pay us a visit from time to time. Just no making things go bump in the night, that’s cheating and Brian’s scared enough of the dark as it is.

    Seriously though, we love you, mate. Always will. And whatever the coming days hold for both of you, take strength and courage from the love you have for each other, and from the love of all your family and friends. In the end, that’s all that matters.

    Love, light and peace

    Gill
    x

  • Jane and Brian and the family

    Neil, Louise, Oscar, Rosie and everyone,

    We are all with you in our thoughts and prayers.

    All our love,
    Jane, Brian, Kayleigh and Jennie

  • ”Time gentleman please”
    well as last drinks go, tapioca and egg custard, are not recommended.
    Much better off with an ice cold Tetley’s and we’re not talking tea.

    Hi hope things go well and the way you want them to. This time I have spell checked, and the fist line is correct, you are both, gentle and a man.
    A man your you beautiful wife will surly miss, as we all will.
    Though a man your son Oscar can be proud of, I hope he reads this some day, and knows what a hero you are.
    (not like these sissies with there underwear on the out side,
    (real men hero’s just don’t do that) sorry had to lighten up a bit was finding it hard to swallow myself there.

    “Those of us who are about to ( live ) in your shadow “WE SALUTE YOU”
    but hell your not gone yet so if you have any tips on my writing stile please let me know.

    Love you MAN.
    Neil. x

  • Tip No.1
    I know, I know proof reading.

  • We’re with you.

    Love, All of us.

  • Oh mate, that’s a drunken saturday nights reading and a half. I said there weren’t enough drunken ramblings on here a while back and im following it up with another – so be prepared! – my tears are rolling down my cheeks here and im so sorry to hear the troubles you are facing this weekend. Its unimaginable, and i cant believe you are still dealing with it in such a practical manner.

    My thoughts are with you and lou and oscar. I hope you get to post footage of him on here, i laughed to read of your troubles with him at nursery and his ‘timeout’ – of course your beautiful boy is as affected by all this as anyone, which is something that perhaps gets forgotten in the melee of all this crazyness. He will be a wonderful bright sparky little boy and eventually man, and you know this. With you two as his parents, how can he not. I hope you find some comfort in that.

    Mate my heart is breaking here thinking about you and i wish i could take all this away. I wish i could go back in time and change the past so we could have spent more time together and been more understanding and forgiving of each other in times past. You know ive always had such deep feelings for you neil, you are a unique person, warm, intelligent, kind, compassionate and brilliantly humuorous. Did i mention gorgeous? You jammy bastard! How does one person have so many talents?!? Good genes dude, good genes :)

    From the first day i arrived in Edinburgh and getting drunk on the first night of freshers week, its been a pleasure and delight. For everyone not aware, that meant snakebite and black (thats a lethal concoction of Cider and Lager and Blackcurrant squash), Karaoke singing Living on a Prayer and throwing up on the bus back! What a way to start a friendship dude!

    The years of flat sharing, spliff rolling, woman chasing, guitar playing and general laughing ones ass off under severe alcohol abuse were a joy and a pleasure from beginning to end. You mentioned a while back on the blog about reminiscing about ECA and i cant say i blame you. Good times man, good times. That’s without even mentioning the times i roped you into starring in one of my latest opus’s, whether that meant strapping on a bald cap (thanks steve) or climbing a Norwegian mountainside :D (Lou, you still sure you wanna see that travesty of ‘filmmaking’??)

    Ah Neilly. Ive had to read your post three times just to grasp what you are talking about. And it still bites like a bastard. But please know i thank you heartily for sharing it with all us on the outside. Know that our hearts are with you all and that perhaps together, we are stronger. That is what life is really all about.

    I love you Neil, and ill see you next Saturday. And please, please don’t do jumping off any bridges just yet!

    Tim x

  • Neil,

    This is unbearable news for me, a stranger to all of you – I feel such anger at the unfairness of it all. I cannot begin to imagine the weight that presses in on each of you at this time. If wishes were horses…

    Please know that there is a great deal of love for you even from people who have never met you. You are an incredible light upon this dark path that you have been forced to tread; your life, and the fact that you have chosen to live it as fully as possible even as your capabilities diminish, is an inspiration. Lucky indeed, are those who are privileged to call you friend.

    I shall make every effort to raise awareness of this foul disease in any way that I can, and shall endeavour to live fully each day in tribute to lives such as yours that are ended much too soon.

    Louise, I have the utmost respect for you, and wish you the warmest blessings to carry you through the inevitable. Little Oscar, you were born into a family built with love – if you grow to be even an iota of the man your father is, you will be a giant among us.

    Blessings to all, and hope for safe passage.

  • Dear Neil
    Your fortitude and courage throughout this ordeal have been ….gob-smacking! It’s also heartwarming to note the love and loyalty of all your dear friends. It’s heart-breaking to think of saying ‘goodbye’…but you will live on among us all – even yer old aunties and extended family and many of their friends who didn’t have the pleasure of meeting you. As you know Sassi, Louise and Douglas have been a team since birth (!) and now, for us, it’s so rewarding to see the next generation – Mairi, Hamish, Eilish, Megan and Oscar set to team up through their lives. Even though I haven’t been around to get to know you as well as I’d have liked, through this medium you have been enabled right close into all our hearts – including mine!
    Lots and lots of love. We’ll continue where you leave off, supporting the cause and doubly loving Louise and Oscar!
    Looking forward to YOUR next message!
    Auntie Liz xxx

  • Hi Neil, am coming down to prize the bloody pub door open and tell the bloody barman to serve up some redbull and vodka! I have guinness, a dustbuster and a repetoire of shyte nonsense to tell you…
    Sunday brings the sun and I hope some ease for you.Much love to you and louise …..see you awfy soon…

    a
    x

  • Wishing we lived closer and could be with you every minute.
    Take great care, don’t wear yourself out, be strong and be as happy as is possible for you at this time.

    Much love as always,

    Lula and Rick xx

  • Thinking of you and all the family.
    Gill x

  • Hi Neil
    I have read your blog recently on a regular basis. I am writing to you from Tauranga, New Zealand. My partner Rhys, was diagnosed with MND in August 2007 at the age of 31. He is now 33 and we are the proud parents of a beautiful little girl – Anahera (the maori translation of Angel). I’m sorry to hear that you are having a hard time. I send my love and prayers to Louise and Oscar. Letting you know we are thinking of you thousands of miles away xox Di

  • Just want you to know Neil, that we think of you every minute of every day.

    I’m still getting sponsors for my ‘diet’, so far it stands at about £500 but I will keep trying for more! (You are my inspiration)

    We will keep fundraising for MND and raise awareness of this awful disease and hopefully there will be a cure just around the corner.

    With all our Love

    Andy and Family xxxxxx

  • Hi Neil,
    So sorry that the day wasn’t any easier for you. We are still hoping and praying that things will improve for you. Wish I could be there to have a drink at the bar with you. You and Louise are a real inspiration even at what must be an increasingly difficult time you are still managing to hold on to your humour and be so honest and open. I am not as good with words as you but just wanted you to know we are thinking of you and sending lots of love and virtual hugs to you all.
    Love Kathy, Nick, Nathan and Carys xxxx

  • Neil and Louise,

    My tears are flowing alongside yours………
    What more can I say.

    Sara x

  • Kate Beddow (Katherine Smith)

    Neil, Louise and Oscar,

    I can’t think what to say but wanted you all to know that we’re thinking about you and with pride at the courage and humour with which you are tackling such difficult times. The awareness you are raising and the legacy you are leaving with every second that passes is incredible. I’m sorry I can’t be more humorous to match your joviality but I’m selfishly sad at the blog, sorry, I’m just not as strong as you x

    Lots of love and prayers, keep fighting and make sure you finish your pint before they kick you out x

    Kate and family x

  • Neil, you’ve never left my thoughts since I came to visit you and I promise you never will. I know we drifted over the last few years but I still love you as much as the close friend I had all those years ago. I thought I knew you quite well but actually I had no idea what an amazing person you are. Your blog shows how much better this world would be if we were all as open and honest as you. When I lost my friend at Hillsborough twenty years ago I said that I would never forget her or stop talking about how she inspired me because if we all did then she would truly die instead of living on in us. You will not only live in all our hearts forever Neil but I know will have changed many, many lives. You and your wonderful family are in my thoughts and tears and prayers and like so many others, I just wanted you to know. Sue x

  • Hi Neil, Louise & Oscar,

    I am absolutely gutted that we were not able to come up and see you this weekend, once I’m no longer infectious, hopefully very soon, we’ll be up to see you. I’m very upset to hear of this latest deterioration, it’s made the fact we were not able to come see you all the more distressing. However although we are still miles away our thoughts are with you. Keep being strong and being amazing.

    Love Loretta xxx

  • Dear Neil,
    Even if we only met once, it was an honor to be a part of the luckiest day of Squeeze’s life–getting married to such a wonderful partner and father. Love, best thoughts for the fulfillment of your wishes today, and kisses to you and your family,
    Amanda, Sara, and Fiona

  • Just sending heartfelt prayers from a stranger in your direction for inner strength and peace over the next few days.

  • Auntie Margaret (ex Smith)

    Hi Neil,
    Sat here with tears streaming down my face wishing that there was some way we could all just turn back that bloody clock, however that is asking for the impossible. Just remember all the good you have done just by managing to write these blogs. God be with you Neil.
    My Love Always,

    Margaret xxx

  • Darling Neil, Louise & Oscar. Words cannot express the thirst I have right now, a cocktail of mixed emotions I have for you all. I wish you all double love, triple in fact! thank you for always keeping your glass half full, a true tonic of inspiration. I raise a toast, wishing you all peace and calmness. Cheers! Caroline X X X

  • Hello Neil,I was lulled into a false sense of security and hope that there was now a kind of plateau from which you’d go on blogging for long enough.I am very sad (and Stupid) -thinking of you all, much love Dot

  • george, chris and mae (von) kelly

    Hey Neil and Squeeze Louise,

    Have been reading religously and sending out links all over the place. If any of this had been happening to us – being the indolent wusses that we are – I’m sure we would have folded like a pack of cards long ago. Can’t believe the level of your collective courage, drive, pragmatism and good humour. Whatever comes, you’ve inspired a hell of a lot of people. Huge love going out to you both and little Oscar. Hope we can get Mae and Oscar together sometime soon.

  • Dear Neil Louise and lovely Oscar

    We send you our love and strength to carry on please for another couple of pints before the pub closes..

    The barman has not yet rung the bell

    the room is still full of family and friends

    the music still plays in the background

    Your glass is not yet quite empty

    Your story is still to be finished…

    All our love and God keep you well

    Bryce and Jane xxxxx

  • Dear All,
    Your latest blog is so so heart rendering, this disease is the cruelest known to man and needs to be stopped, advertised only telly so everybody is aware. Night god bless to you all.
    Your are in my prayers every night
    Much Love Lou Mc

  • Neil, Louise, Oscar, Rosie and John
    We have been thinking about you so much today and every day. Our love goes out to you, especially over the next few days, and we will keep ‘spreading the word’.
    With love
    Marian and Alex

  • Hello Neil, Lou and Oscar –
    We have you in our prayers every day, and there’s not a day that passes that we don’t think of you all. Through your blogs, you have shown all of us what strength and courage really mean, and how the love within a family can be so powerful. Oscar was born in a beautiful family and he will become an exemplary individual, like his father and mother. Love always, Michelle, Tony & Maia

  • Hi Neil – I’ll join the metaphorical throng at the bar to share a pint with you and perhaps a cheeky bag of virtual pork scratchings. It’s been simultaneously heartrending and inspiring to catch up with your life over recent weeks and I hope that everything goes with all the peace dignity you’ve earnt.

    Thanks for the inspiration – and all the best to you, your friend and your beautiful family.

    Carps

  • Clearly, that should have read “friends” as you have many, many more than one!

  • My Dearest Neil

    I read this last post with sadness, and I will go to bed tonight thinking of you and Louise, and Oscar, but especially you.

    My fingers and toes are firmly crossed; I hope that tomorrow brings a brighter day for you and your family.

    I can not even begin to understand the emotions you are going through at this time, but I can start to imagine some of them, and when I think what you deal with day to day, you fill me with an immense sense of pride, and love for you.

    You have shown me, over this last year that against all the odds and with the love of your family and those closest to you that anything is possible, I have always believed that myself to a degree, but you have proved it to me in more ways than you will ever know.

    I am still excited from when I saw you a few weeks ago, a memorable day which will stay with me forever, just like the old days, I wish you would have let me shimmy down that drainpipe first stop pub, with two large cold ones waiting for us. At some point in the universe I promise you my friend that we will meet for that beer.

    As always buddy you are never far from my thoughts.

    Love

    Rickster xxx

  • Neil,
    Your courage make me fill very weak.
    Stay with us. There are few decent people left and you are one of them.

    Luciano

  • as much as i would never want you to leave me neil, i support any decision you make and always have my friend.

    first band night was amazing and raised over £400 already!

    just want you to know you are in my thoughts and alway have been and will be. i love you so much my friend – more than you will ever know x

  • We love you…
    Sas, Mike and Megan x x x

  • Neil,

    I have searched my brain for something to write to you but i have reached the conclusion that there just isn’t anything that even comes close to worthy, so instead i am sending you my love. You and your family are in my thoughts today and everyday.

    Laura xx

  • Neil

    Love and courage being sent from Johannesburg, South Africa.

  • Neil Luoise and Oscar,

    Although I have kept up with the blog, this is my first post, and for that i apologise. I wanted to let you know I have found your words both emotional and inspirational. Your strength of character and positive approach should be a lesson to us all.

    I trust your “nightcap” at last orders is the one you wished for, and I’ll raise a glass to you and yours.

    Yours aye

    Alastair Raitt.

  • We don’t know each other…but our friends Brian and Jane McE have been tirelessly promoting your site. I’ve been so touched by your story. My thoughts are with you three. Zandra

  • Really sorry you had such a bad weekend, hope you are feeling a little better in yourself. Looking forward to Oscars footage!

  • Aunty Pau's & Uncle Mel

    Hi Neil Louise & Oscar
    So sorry to read your last couple of entries, you know you are all always in our thoughts. See you on Wednesday and hope with all my heart that you have a better days.

    All our love
    Aunty Pau’s & Uncle Mel
    xxxxxx

  • Your courage is amazing, you are a fabulous example to the rest of us and you will leave Oscar a wonderful legacy. xxx

  • Mate,

    I’m lost for words. Please take comfort from the love that surrounds you. You’ve so much grace under this pressure, try and be brave as you are strong.

    Love you mate
    Cash & Scoob
    xxx

  • Neil

    You have brought so much joy and laughter into so many peoples’s lives. You are a very special person and my memories, thoughts and prayers are with you, Louise, Oscar, Matthew and your lovely mum at this difficult time.

    All my & the L-Ds Love

    Camille XXXXX

  • To our darling Neil your uncle john and i are heartbroken knowing your brave and strong fight against this horrible disease, that has overtaken your body and beautiful mind is coming to a close is so unbearable and hard to except. The thought of, like your other friends and love ones, think there will be this giant hole left in all our lives forever that can never ever be filled again. No matter how many lives you have touched, people will remember you forever, your louise will show our oscar what a man in a million his father was. We love you very much and always will. You will always be with us. We will look after your lovely brave mum always.

    goodnight god bless your Auntie Sue & Uncle John x x x x x

  • Neil Louise and Oscar. All our thoughts and prayers are with you and your family at this difficult time. We are all inspired by your courage, strength and determination. We wish you a quiet and peaceful night.

    God Bless.

    Love

    Andrew, Samantha, MacKenzie, Will and Hayden Calder
    Vancouver, Canada

  • I dont know you all but am an old friend of Doug’s. I have been thinking about your family’s situation alot and just wanted to let you know you are all in my prayers.

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