Last Post – 10th October 2015 – THANK YOU!!

We did it! Ken always promised we would only be in Toronto for 3 months and in the end, we came home after 3 months and 1 day. Not a bad prediction from the most determined man I know. Our friends and neighbors gathered to welcome us home with a surprise party and celebration. The perfect homecoming! The boys are back with us as life settles down and Ken is doing great. He is healing well and getting stronger all the time.

Every day we celebrate the normal things. Before his operation Ken stubbornly made breakfast for the kids even though it had become a challenge. He would use a chair situated right next to the stove to sit and catch his breath every couple of minutes while scrambling eggs or cooking bacon. Now he potters around the kitchen, relaxed and happy while rustling up food. I watch him cut the grass, or bring groceries in from the car, or fool around with Jocky D and a rugby ball – and I marvel! They are normal, every day things but they are new to us. The other day he came home from the grocery store and stopped to tell me he had helped an elderly lady return her shopping cart to the shop. He was happy just to be able to offer someone else help.

The boys have already stopped watching him to check everything is all right. It is nothing short of extraordinary how quickly they have adapted. Life for them is about school and friends (but perhaps not in that order) and all that everyday stuff.

It has been a unique journey and while the hospital chapter has come to a close Ken will go on getting stronger and healthier in the coming months. In the bigger scheme of things it is still early days but my message is simple. Ken is on his way.

I am going to make this my last post. In many ways the story is only just beginning but it was always my intention to use this forum as a way to carry us through the nucleus of the storm. Writing the blog has been life changing, cathartic and kind of friend to me. I shall miss writing to you.

The word ‘thank you’ has come to feel too small for me in all of this. It doesn’t seem nearly enough to give to you when I think of everything you did for Ken, the boys and I. Your generosity made all the difference to our experience in Toronto; your support, messages and calls pulled me through every day Ken was in the hospital and your humor and love shone through the countless photos. We have made new friends and reconnected with folk across the world. The GoKennyD campaign sped up Ken’s waking and coming back to us. From time to time I sit and meander through the 2 full albums of GoKennyD photos and reflect on what we did together. It was company and kept you all near us as it grew and became so much more than we could ever have imagined.

All of this has changed Ken and I. We have never been more affected by and grateful for the friends & family we share across the world. Never have we been more aware of how our lives interconnect and how a simple kindness can make all the difference to someone’s day. We promise to take that forward with us.

So many of you told us you’ve registered as donors, understanding how simple but vital this decision is. It is just the right thing to do and if the sharing of our experience proved provocative in your decision-making so much the better. Somewhere in the world a family was able to make a decision in the worst possible moment that gave Kenny D back to us. A profound gesture of unrivalled generosity, courage and love. In the midst of all the chaos and so many precious messages, one of you wrote to me and said:

“Kenny and you are very close to our hearts and we’re with you there in thought and in our talks to the sky. I am not by nature a religious man but nor am I so arrogant as to think there are no powers beyond us residing out in the universe or beyond.  Please know that whatever they are, I am doing my best to summon them on Kenny’s and your behalves.”

This resonated with me so deeply and reflects my own views of life and the universe. But because of you all and what we have come through I do now believe in miracles too.

The last GoKennyD message that came in was from his regiment via Ken’s good friend, Nick Wight-Boycott – a short video of everyone in uniform on the parade ground with a huge GoKennyD sign in the middle of their crowd, complimented with a massive       shout-out. It was wonderful and perfectly appropriate as the finishing line.

This is not a link but I have made the video public on Facebook so you can see it.

This is not a link but I have made the video public on Facebook so you can see it.

And then, the other day Kenny D posted a photo of himself with his friends back in the diner having breakfast. Back where the very first GoKennyD photo was taken in his absence on the day of his surgery. It felt wonderful to see that photo!

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As every, we send our love to you all. For those of you not on social media please keep in touch by email or phone from time to time. We will continue to use Facebook and where the messages are relevant, we will make them public. That way you can catch up with us whether you subscribe or not. And in the meantime, take care of each other!

I thought it would be appropriate to finish as we began with a song we named the blog after – ‘Between Two Lungs’ by Florence and The Machine. Today however, the words have come to mean something very different.

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Wednesday 26th August, Books & new chapters

It has been a month since I have written. We are in a new chapter now. I think I have been waiting, afraid to say we are on track. Every day it feels like it might be premature or too optimistic. I only want to whisper our news out to you in case I upset some superstitious balance. But I am all too aware you are waiting for updates so please forgive me.

Every day is a potential hurdle and a victory. Ken checks his temperature, his lung capacity and/or any sign something might be wrong. So far each 24 hours we have crossed the finish line, free of issue. It is difficult not to be paranoid but in all of it, we celebrate even the smallest steps forward. And when we compare how things were to 4 weeks ago, you could argue there have been giant leaps for mankind.

A month ago, due mainly to the muscle atrophy (caused by all that time he was unconscious and not moving) he required his wheelchair to cross any distance. Now Ken walks to the hospital unaided making the wheelchair finally redundant. More recently he even chats with me while we walk together. It may not seem like much but it was only yesterday he needed every ounce of breath just to do the walking.  And as some of you saw on Facebook he managed a leisurely ride round Alun’s neighborhood last weekend on a bicycle. That was something to witness! He works diligently in physio and literally every session, he squeezes the speed or gradient of the treadmill up, or goes for slightly heavier weights. Inevitably he wants to move things forward faster and tells me how huge patience has become in all of this. It is a long process.

Alun and Carolyn have given us a home to retreat to at the weekends. Carolyn’s green fingers (sorry you mad Canadian’s but it simply cannot be just a thumb) have created a tranquil oasis of colour in her backyard. It is so quiet after days in the downtown core of Toronto. Butterflies and bees bob among the flowers and humming birds delight as they flit and hover. It gifts mini holidays for both Ken and I every 5 days to be with them. They have been with us every step of the way and we shall remember that all our lives.

One could argue we are on the home straight. As far as getting back to the boys and some semblance of order, it is true. All going well we could be home in Ottawa by the end of September. Truthfully, the separation from our boys is kicking in harder now the madness of those initial days are behind us. The boys enthusiasm for their happy summer days with Judi, John and family, our neighborhood, visits with Erin and Jack and a whole lot of trampolining have kept our spirits up. We know what good hands they are in!

Across the days there have been highlights. It was so good of my friend and colleague Callie to hold a party in her home while I was back in Ottawa for work. And such a motivator for Sandy to parachute into Toronto surprising Ken with his visit. That day was cherry-topped by Jack gatecrashing the party in his suit to pick up Lochie’s skateboard, only to roll out the restaurant smoothly on it’s wheels.

Jack

Jack

I want to also mention Ed Caesar. He is the writer of a incredible book called “Two Hours – the quest to run the impossible marathon”, which provides an insight into truly remarkable levels of human drive and determination. Ken has never met Ed but both played rugby at Heriots, albeit at different stages in life. Richie Lockhart connected them and a copy was delivered to our apartment with a compelling note of encouragement from Ed. Ken has already read the pages cover to cover and needless to say, loved it! He has found it hugely motivational to read stories of the extraordinary athletes, who dig so deeply to push their bodies to the absolute limits (although Ken admits it’s unlikely he will shave the required 5 and a half hours off his previous marathon time to hit the elusive two hour mark!).

My colleague Janice Dickson has also published her book called Herbert Peppard, The Eternal Man – a true story about a 94-year-old World War Two veteran who was a member of the Frist Special Service Force, known as the Devil’s Brigade. Not only did Janice give a copy to Ken but it is signed with a Go Kenny D from Herbert himself. Fabulous!!

And so we count the days and hope beyond hope, we can get back home soon. Meantime, as always, our thank you’s are endless and all encompassing. We are so grateful for your unwavering support.

Sending love and thanks! #GoKennyD

And finally, it has been a while but here is Ken’s latest music choice.

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Saturday, 25th of July – Orange juice

It is Saturday lunchtime and Ken is taking a nap. So, I thought I would write to you. This will help me to be quiet in our wee apartment while he rests.

Ken’s release on Monday was inevitably a little nerve racking but in the first few days we are already building a routine. I’m getting back into work, the boys are enjoying their summer, Ken is settling into our temporary home and the hospital continues to provide unwavering support. He has physiotherapy 3 times a week, regular tests and bronchoscopies as well as a full day of clinic on Mondays. The clinic works closely with Ken to customize his meds and monitor his wellbeing as he slowly strengthens back up. They have told us it will realistically be a year before Ken is fit again but I can already see changes in his breathing. At rest he breathes with ease and when moving about it is his muscles for now, that let him down. It will take time for his lungs to reach their full potential but again physio will help increase their efficiency. Gone is the desperate struggle to catch his breath as he moves around. Gone are the weird but wonderful noises he used to make. What remains is Ken’s steadfast determination to crack his goal, well within the 12 months set by the hospital. Complications are common however. The road bumps will come in the form of reactions to medication and issues surrounding the need to keep his immune system sufficiently suppressed. It is rare for someone to sail through the first three months without a hitch but we are doing all we can to be careful. Everything needs to be sterile and washed. Public transport and crowds are out for now. But an outdoor patio in the shade, for a fresh orange juice at the end of a busy week is not only allowed, but encouraged.

The physio room is specifically for lung transplant patients. Ken knows this place as he attended intermittently over the two years we waited for his transplant. For me however, it is new. Those using the facilities are still waiting in hope for a suitable donor or like Ken, in post-transplant recovery. They range from children to the elderly. To be among them is heartbreaking, humbling and inspiring all at the same time. The room looks at first, like an ordinary gym with treadmills, bicycle machines and weights. Each patient has a caregiver who helps keep the equipment sterile and updates paperwork as each set of exercises are completed. Mothers help their daughters; Husbands support their wives, friends encourage friends. As I watched each team of two working together I realized this gym, while looking like any other, is actually pretty extraordinary.

What started with 4 friends in a café sending a note of encouragement on the day of Ken’s operation has turned into something beyond anyone’s imagination. (Paul Moen, Jack Burkom, John Ivison and Joel Crouse – Ken and I will always be grateful!) The ‘Go Kenny D’ campaign staggers us. Every day more photos come – more friends take the time and every image is enjoyed and shared. They have come from all over the UK and across Europe. New Zealand, Fiji, Dubai, Africa, Singapore, United Arab Emirates, Kuwait, India, The Caribbean, Japan, Australia, the Philippines and the USA include the countries photos have been sent from. Canada has been outstanding and Scotland has been behind us all the way. Old friends from school who we have not seen in years have participated. Work colleagues both current and from other stages in our careers took the time. Your kids have got involved as well as your Mums and Dads. And Ken’s former regiment, the Royal Scots sent photos from across the globe individually as well as from groups of veterans who gathered in both Edinburgh and the Highlands. (Special thanks to Bill Sutherland and George Higgins).

It is impossible to explain how much it means to Ken, the boys and I. We are doing our best to find real ways to pass what you have done forward. This week, we used your kindness to bring attention to the need for all of us, to register as donors. My baby brother, Craig (he will kill me for saying that given he is 44 years of age) worked very hard to help us. He did the research and calls to determine who would be the right people to approach. At the moment a white paper is being presented to parliament recommending an ‘opt out’ solution for donor registration in Scotland. This makes such good sense. The story you have helped create, being shared publically back home will help keep a spotlight on the issue and encourage more people to recognize the importance of this change in the Scottish donor system. The BBC have run a piece on both the radio and in print and the Edinburgh Evening News is featuring a full story this coming Monday.

http://www.bbc.com/news/uk-scotland-edinburgh-east-fife-33636059

Right now in Canada I do not believe an opt out option is on the horizon. But the online registration process takes less than 3 minutes! I know this because my friends have timed it! There is no age limit (a 93 year old man donated his organs recently and saved a 69 year old woman). 1500 people in Ontario alone, are waiting right now for another chance at life. Think about that. Registering as a donor and making sure family knows your choice is simple, but essential.

Tonight the lovely Sarah Hennessay and Pippa Aird are coming to have supper with us. Curry is on the menu. Ken will be thoroughly spoiled and while we miss our boys, we are lucky and grateful to be so well looked after by our Toronto family.

Sending love and thanks to all

#GoKennyD

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Monday 12th July – Walls of Love

Ladies and Gentlemen – I am utterly delighted to report that after 39 days in the Toronto General Hospital, Kenny D was released today and aloud home with me. It is pure joy to watch him rediscover simple pleasures – his first bath, a haircut, good food and the peace & quiet of our wee apartment. It is a privilege to be with him in these moments. While we celebrate our departure, we take with us the incredible care Ken (and I) received every hour of every day. I will not give you names because if I did so, I would have to list every last doctor, cleaner, nurse and therapist. They caught Ken time and time again, ensured I understood every step and made me feel part of their team. They made the experience bearable for the boys and welcomed our friends & family where ever possible. They built a trust with us that sustained throughout.  Needless to say, they do not do their jobs for money. They do it because it is their calling. One of the nurses told me she gives so much of herself at work, she has little left beyond the doors of the hospital and yet, it is enough for her. I believe they have changed me. I really want to do more and be better as a result of being with these incredible people this past month.

For those of you not on Facebook, I posted this message a few days ago –

“I have to tell you this…..
However simple or extravagant, every ‘Go Kenny D’ photo you send us truly makes a difference. It motivates Ken and I, entertains us and fills us with gratitude. It excites our boys and reminds them every day of the extraordinary support we have all the way around the world. The nurses and hospital staff enjoy them too. We have filled his room with prints of all the pictures. They tell us it is the most colourful room in the whole hospital and have used the description “walls of love”.
Thank you everybody!”

Ken and I were talking about the pictures today. He explained, in the days he was waking up, he would take his time and study each of the pictures. It took hours and days to piece together the images and understand them. But he stressed how much the process helped bring him back into the present. We have spoken to the hospital team about this and they plan to encourage other families to follow what you guys did for us. Just the other day they told me another patient’s room had been filled with drawings and pictures by a man’s children on the back of this suggestion. So you are not just helping Ken and I – it is being passed forward.

Having taken the pictures from the walls of his ward I am now mounting them on black card and painting picture frames round each one (a little more economical than the hundreds I would have to buy). When they are up, I will take photos for you.

The hospital work very closely with every patient to balance the right time for discharge. Thanks to my brother Hugh we were in a strong negotiation position to get Ken out due to the close proximity of the apartment. Their calculation weighs up his need for sleep as well as the increased risk of infection from staying in the hospital. Then their is the motivational impact this next step has, not just for Ken but for all of us. So, here we are!

The next stage will be tough for Ken. He has so much work to do. His body has severely deteriorated given the ‘malingering’ (as he put it) during those 16 days before he woke up. It is astounding how quickly muscle weakens if not used. He still needs his wheelchair for any distance. That said, he did insist on walking into the hospital on the day of the operation and today, he insisted on walking out of there. I love that about our man! The photos I have attached are of these ‘new chapter’ moments but it would be unfair to mislead you – he needs a lot more time before he is really up and running. But let me assure you, I see that familiar look in his eye, and smile in the knowledge he is as focused and determined as he has ever been. And for those of you who have contacted me to say there are more ‘GoKennyD’ photos to come, please know your motivation will continue to make a huge difference to us all. 

In order to accept his new lungs he must now take a regiment of drugs every day to suppress his immune system and protect him from infection. The drugs will take some getting used to and the hospital will work closely with him to create the best version of dosage ideal for Ken. He will be at the hospital 4 days a week working with physio, attending clinics and check ups. It is a lot….but it is all worth it. And they have done a great deal to prepare both of us. Two days ago we attended a class to learn more about all the medication. I sat in a room with other recipients of liver, kidney and double lung transplants. One of the ladies there looking after her husband was wearing a t-shirt. It read – “Don’t take your organs to heaven. Heaven knows we need them here”. And as I looked around the room I marvelled at the patients and those caring for them. I thought too about those who have lost their loved ones and had the courage to follow through on their choices at such an impossible time. And I realize once again that even in the most terrible of situations, miraculous, life changing things can be passed forward. So my friends, please – go register and become a donor if you have not already done it. It is just the right thing to do.

Ken is sleeping and my happy day is wrapping up too. But I cannot sign off without thanking my Jilly B who made Canada what it has become for me; my Ellie-Belle who has the ability to make me laugh even when it hurts, and my Lochie & Jock who are the bravest kids I know!

I am sending each and every one of you all my love and thanks.

#GoKennyD

http://www.littlethings.com/didnt-it-rain/?utm_source=LIVE&utm_medium=social

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Tuesday 14th July – Lachlan & Jocky D

Ken is out of the step-down ward and now in the transplant unit, ward 7a on the 7th floor – and we are all smiling. Every day we reach new mile stones. Yesterday he was given an eating test to ensure his throat muscles are still strong enough after not being used for a month. He passed the test and was given his first meal last night. It arrived on a plastic tray with a plastic cover over the plate over the main course to keep it warm. It may not have been gourmet cooking but it was a special meal for Ken and would you believe it – they gave him mince and tatties! My Mum would have been delighted.

The boys being here fills us with revived energy and determination. They lift us and make us laugh. And remind us how incredibly lucky we are.

Rather than blether on, I will leave you for now in the knowledge everything is getting better every day.

Always with love and thanks!

#GoKennyD

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Thursday 9th June – Hazel

Day 27 was another in a series of good days. As soon as Ken came out from under all the drugs and sedation he was able to consciously get into the fight. And now the will and determination we all know and love in him is driving the story. Yesterday he was taken from the ICU to the step-down ward. The weening (as they call it) to get him off the ventilator is going smoothly. They were even able to attach a wee device called a cork (a name I like) to the pipe in his throat allowing him to speak. Listening to those Scottish dulcet tones was pure tonic. We phoned a few family members to surprise them and honestly, it was like being given the role of Santa Claus handing out the best presents ever. He is not up for phone calls quite yet as ‘the cork’ is not used all the time but it shouldn’t be too long now.

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His stitches are out, his stats are great, he is walking steadily round the ward every day and his sense of humor is in excellent shape. The staff in the step-down ward are just as wonderful as the ICU. They do everything they can for him and we are all working toward getting the man out of there and onto the next stage. Once he is fully weened from the oxygen support they can remove the tracheotomy  and he will then go to a normal ward on the 7th floor. There he will begin his rehab and work toward the big day he finally gets to leave the hospital. The whole thing is pretty remarkable.

Al and Carolyn have been unwaveringly supportive. And while I have huge ‘thank you’s’ for almost their entire community in helping with the apartment and so much more, I know it was Carolyn who rallied her troops. But even more importantly she has given me such friendship. She calls me every day just to check in. We shop together and laugh the whole time. I will always think of her while shopping in Sobeys and Dollarama with a smile. We kept noticing people doing their groceries etc, with granny-wheelie-bags (I’m sure there is a more technical name for them but you get the picture). Living in a downtown apartment this is obviously more convenient than a car. So we went and found one and we called her Hazel. This made perfect sense to us but I confuse everyone else completely whenever I refer to her. “Who on earth is Hazel?” She is my other lovely shopping companion thanks to Carolyn.

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There are so many people to thank! Thanks to Gillian – I had the most wonderful night out with the Metis ladies and their men at the U2 concert – talk about letting your hair down! And I could not write this tonight without giving a huge shout-out to my wonderful colleague Kelsey. Jacky and Jen took the trouble to come back and see me for a couple of days and brought with them a box full of home cooked meals and goodies from her. What an enormous effort and let me tell you, the girl can cook! – so, Kelsey – thank you my friend!

Kesley cooking

With so much help and support our wee apartment is looking very homie and I have come to feel safe and familiar here. Today the whole city shines a little brighter with the arrival of Jocky D. Jack drove him down from Wolfe Island this morning as Ken and I watched the clock all morning in anticipation of his arrival. Lachlan comes to join us at the weekend and the four of us will be together again. Perfect!!

The Go Kenny D movement (as I have come to call it) has gone wildly beyond any expectations. Joel’s crew of seamen giving us a shout out from their ship: Dennis and the phenomenal sign on his city crane: Bronwen and her horses with the words actually written on their backs: Bobby and his team; The 30 attempts it took Sandy & Debbie to get their 2 horses and dog looking at the camera, my beautiful friends from school days and our wonderful colleagues from both iPolitics and The Health Agency of Canada. The list goes on and on. Ken and I start our day enjoying and savouring each and every new message. He was beside himself when he saw the All Blacks had joined in thanks to Hugh, and looked at me with complete astonishment when Rupeni delivered the Fiji team as well. But you must know that every last one, from the grand and complex to the most simple brightens our day, motivates us and keeps us going. It is truly magical.

I had a wonderful conversation with Helene Campbell yesterday. For those of you further afield, she is an extraordinary young woman who herself had a double lung transplant a few years back. She works tirelessly to promote the need for people to become registered donors. And I plan to join her in this vital campaign. She told me that every day in Canada, 3 people die because an organ doesn’t become available in time. Every day! I hope your involvement in our journey with Kenny D provokes you to register and to get all you know to do the same.

Some of you may remember the woman I told you about who helped me get set up with wifi when I first moved into the apartment. Erin wrote to me the other day and told me Ken and I had inspired her to stop smoking. She has not had a cigarette since Canada Day. I just had to share this with you. Brilliant!

Yesterday afternoon Carolyn and Al came to visit Ken and I. While chatting Alun asked if Ken had really begun to take in the difference in his breathing. Ken thought about it for a moment and slowly took a breath in, held it and then let it out. I have not seen him do that for years! It is so simple but truly, it is a pure and beautiful thing. Kenny D still has a lot of rehab in front of him and so much work to do to build his strength back up. But he can breath and every moment of every day I celebrate that with you all.

Sending love and thanks.

#GoKennyD

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3rd of July – nails!

Ken and I are sitting together in his room – yes, sitting. He is right next to me in a comfy char and today we thought we would write the blog together.

All the positive energy you are sending our way is working. Ken is making great progress now with more good news every day. The ward has 29 rooms that line a large rectangular space with meeting rooms and the nursing station in the centre. It is a considerable distance and today Ken walked the whole way round. When we got back to the door of his room he inevitably asked if he could go further and the world class physio, Vince could only smile, shake his head and agreed.

He is writing notes for me to tell you – half his stitches our out with the rest being dealt with tomorrow. Every day another piece of attached equipment is taken away and on top of everything else he is being weened off the ventilator that supports his breathing. They explained to us the first time can be difficult and the aim was to breath independently for around an hour. They set him up and the first hour passed, then the second and the third. Ken did 9 hours straight!

The ICU team continue to encourage and take care of Ken in every possible way. We know many of the staff in the ward now and they always greet us so warmly. Turns out the French surgeon who we met the very first night, used to play rugby in the same position as Ken. Everyone comes into his room and admires the pictures you have all sent. As well as those on the wall, my pal Michelle put together an album and Ken and I look at it every day.

Your emails, texts and audio messages mean so much to us both. They entertain us throughout the day and keep us connected to you all. The Facebook campaign continues with Nicola Sturgeon, 1st Minister of Scotland and the infamous John Beattie as well as so many more of you we love. I cannot tell you how much they motivate us and keep us going. It is the first thing I look for in the morning as I start my day – so if you know anyone who hasn’t done one yet get them to join in so we have you all in the book when it is done.

We still have a long way to go but every day has it’s own moments of hilarity. Today, for the first time EVER (lets just say he is NOT a foot man), I cut Kenny D’s toe nails day. We laughed together the whole time. Tomorrow the lucky chap gets his hair cut by me! So we shall see how that goes….if he is looking a little dodgy in the next set of photos you will know why.

We love you all and send you our thanks.

GOKENNYD!

Here is Ken’s latest music choice

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