Archives: Friends

Despite being shattered from a busy week and a late night with the family last night, K and I were both ridiculously happy to spend lunchtime with our little gang of friends again – it kind of felt like old times, meeting up and hanging out together as a group twice in the space of just over a week.

It’s lovely to know that however long it is until we do it next (which hopefully won’t be as long as the gap up to these two weeks), we’ll still pick up exactly where we left off.

And Steve’s baby will probably still stare at me oddly and occasionally smile.

Thanks for having a birthday, Dave.

The highlight of my day was not (surprisingly) the 6 hours I spent in the car driving to Bristol. I do love long car journeys, especially when it gives me a chance to listen to some of my heavily-stacked Podcast queue, but even 6 hours is pushing the enjoyment factor when I’m in the car on my own.

I did however, love chatting to BBC Radio 5Live Breakfast and BBC West Midlands Drive about the rising CF population and the predictions that it could almost double by 2025. Not sure I agree with the numbers entirely, but we know the number of people being born with CF is relatively stable, so the prediction suggests a definite rise in longevity, which can only be a good thing.

This week on Tuesday it was Kerry’s birthday, then Emily’s, then Jess’s. All three of them no longer with us, all three of them succumbing to the ravages of CF and the complications it brings. The fact that we could be looking at a future where no one is dying from CF is incredibly exciting and definitely brought a smile to my face. What better way to mark their birthdays than helping spread the word about our fight to beat CF for good?

A friend got a transplant call today. Still waiting to see if it goes ahead, but just the possibility of it has me smiling from ear to ear.

I had a meeting with the lovely people at the Duke of Edinburgh’s Award Scheme today, finding out how we might be able to assist people with CF to undertake the award and also how we might be able to support them and all young people taking it on to complete their volunteering section. CF is still a young people’s condition, so it’s vital that we support young people with CF as much as we can, a huge part of which is helping them do things that everyone else does, as well as raising everyone else’s awareness.

It wasn’t until I was sitting across the table from my colleague at lunch just outside Victoria station that I realised the meeting would be in the same building as World Vision UK’s London office – they’re all in the same charity office complex there – and it made me smile to walk the familiar roads up from Victoria to Belgrave road and into the familiar surroundings of the slightly dowdy-building with the always almost friendly security guards.

It did cause me to reflect on the downside of an overly-scheduled day, however, knowing that straight after the meeting I had to head back to Victoria to get back home in time for another meeting in the afternoon. With a little more breathing room in my schedule I’d have had time for serendipity to jump in and lead me back up to that familiar fifth floor to drop in on my old colleagues and catch up. My day was missing the Big Orange today and although the building made me smile, my inability to take advantage of the visit made me just a tiny bit sad.

It’s odd things that unite or reconvene a posse as you get older. Back in the day (in fact, pretty much a decade ago now, which makes me feel really old) there was a time when K and I lived downstairs from our best friends Steve and Dazz and were frequently visited by Dave and PS; we basically lived out a real-life version of FRIENDS but with tea on the sofa in one of our lounges (often in PJs) rather than coffee in Central Perk.

Obviously, we moved on, upwards and apart – geographically rather than emotionally – and began to see less of each other. 

Today was Steve’s daughter’s first birthday party. She’s one, I mean, not that they’ve been so mean and tight-fisted that she’s never had a birthday before. And it was the first time in as long as I can remember that we had that gang back in the room together. 

When you don’t see friends for a spell, there really is no better feeling than picking up as if no time had passed at all and slipping into the same easy rapport you always had.

I can count on my fingers the people with whom I have this sort of relationship and this gang take up one whole hand. We’ve been through thick and very, very thin together and we’ll always be there for each other however far apart we may be.

Old friends really are the best friends.

I don’t normally do review posts like this, but today I somehow feel it’s necessary.

I’m tempted to say ‘good riddance’ to 2014; the last 12 months (plus a few days at the back end of 2013) have possible been the worst of my life, filled with such depths of sadness as they were, not to mention other rocky patches I stumbled through during their course.

But that’s not the nature of this blog and it’s not my nature either. I may be wallowing in sadness a little longer than I usually might, but I’m not one to rail against the world. I don’t believe in a world with no redeeming features and I’ve continued to try to find life’s little silver linings, to smile through it all.

In that spirit:

This year I lost 4 friends:

Kerry was a friend I first filmed in 2012 who told her story so eloquently and beautifully it even made me tear up, which is tough for someone who has seen and lived through so many stories of life with CF.

Anders was a distant but no less sturdy rock for me when I needed support. Twice, when I was having a rough patch and knowing that I had zero music knowledge, Anders made me a mix tape (on CD) and sent it down for me to stick on to keep me tuned into the world around me.

Emily was the friend who was always one step ahead of me.

And Eugenie was someone who seemed never to ask anything of anyone in life, to offer nothing but her heartfelt support, love and affection to everyone she came into contact with, and to find out today that she’s no longer with us is almost too much for me to bear.

This year I saw my niece turn 1:

Isla is everything I could have dreamt of in a new niece, the perfect addition to the growing cadre of nieces and nephews that light up our life. And she’s the niece I never thought I’d see and, without the kindness of one person and their family, I never would have.

This year I lost my way:

Halfway through the year, after losing three friends in 4 months (Gareth, Kerry and Anders), I didn’t know what to do with myself and everything seemed a bit pointless. But having my wife at my side to guide and support me, not to mention my wonderful colleagues at World Vision, I got through the tough times and found my way again. Unfortunately for my colleagues (or fortunately, depending on your point of view…), it would be elsewhere.

This year I found a new home:

When I saw a job description looking for a master storyteller to join the charity whose work over the last 50 years is largely responsible for me being here today, it felt utterly perfect. How could I not put my name forward for it? Again, thanks to encouragement and support from my wonderful wife, I applied, was interviewed and was given the job. What a way to give back to the people who’ve helped me be here and what a way to help pave the way to a brighter future for all those going through what I went through.

This year I learned how to make mistakes (and recover from them):

K and I upped sticks to move to St Albans to be closer to the CF Trust office in Bromley and make the commute a little easier. We found a lovely little flat at the top of the high street and roped in a cohort of friends and family members to help us shift all our stuff from our 4-bed house to our 2-bed flat.

And then we realised how big a mistake we had made. We were miserable, and making each other miserable. So we reversed our decision. Quickly and quietly we gathered our things and five weeks after we’d moved out, we took ourselves back to our lovely Wellingborough dwelling and I discovered that a longer commute is worth the time if you come back to a place that feels like home.

This year I learned that grief is all-consuming, but that it will pass:

From moment to moment I’m am still struck by enormous pangs of pain in missing Gareth, who was such a big part of our lives and whom we loved so much. And as each death this year has started to mount up it’s become harder and harder to take.

But as I sit here and hope upon hope that 2015 will be kinder to us and to our friends and to our family than 2013 and 2014 have been, I recognise that all these things are fleeting. More importantly, all these things, these experiences, are what make us who we are, are what make me who I am and are what make each and every moment we share with the people we love most the most important moments of our lives.

Hug your loved ones close in 2015, and give thanks for the time we have with them. And if they are no longer here to hug, raise a glass and a smile for the light they brought, not for the shadow that remains in their wake.

Lots of things will be written and spoken of Emily Assen (neé Thackray) in the next few days and weeks. She died yesterday after a second double-lung transplant proved too much for her body to withstand.

Emily’s unique ability – using unique in its literal sense, as I’ve never come across anyone with the same gift – was to make everyone she ever came into contact with feel like they were the most important in her world.

There are dozens of people who will be grieving the loss of a best friend today, because that’s who she was to everyone: selflessly sharing her love and compassion for the world with all she brushed against and, in the process, making everyone she touched feel special, feel like they mattered. She made a difference.

Equally, everyone who knew her will have their own ‘Emily’ with whom they spent time, shared laughs and cried when it was warranted. We all new a different friend who gave different things to our lives.

My Emily came into my life in the early days of the internet when I first discovered the Cystic Fibrosis Trust forums: she was already there and dispensing support and advice as needed. I struck up a friendship with her and with some of the other frequent posters and we supported each other through tough times of losing friends that we were terribly close to. It seems nothing much changes in a life with CF.

When she set up the organ donation campaign (now charity), Live Life Then Give Life, with her great friend Emma after the loss of more than one mutual friend on the waiting list for transplant, I offered to help in any way I could. I ended up being one of the first Trustees of the charity and being part of the team that one Best Campaign Team at the 2008 Charity Times Awards and Best New Charity the following year.

My Emily was always one step ahead of me on my CF journey. She was the first of us to start needing supplementary oxygen. She was the first to use a wheelchair. She was the first to have a lung collapse. She was the first to be assessed for transplant and, thank God, the first to receive it. She was the first to be married after her transplant, and the first to have serious complications. Now, she’s the first of the two of us to go.

What became indelibly unique, thought, was that everything she went through became a source of help and information for others. She never hid away from anything and always used her own lived experience to make it even a tiny bit easier for others going through it. She supported me as I took every step and misstep she took a few months further down the line.

The day I finally got my transplant call I remember sending her a message and getting an immediate phone call back.

“Take some paracetamol now,” she told me.

I wasn’t sure if I should, but she countered immediately, “The stress of the situation might raise your temp and if it does they won’t go ahead. Take two paracetamol now and it will drop your temp if you have one, but it won’t mask anything more serious that could be a real contraindication.”

I took them. I passed the tests. I got new lungs.

The story that sums up Emily, though, came through on my Facebook last night from one of my oldest friends and was one that I’d never heard before. This stands as testament not only to her willingness to help and support anyone and everyone, but also to be humble and quiet in going about it.

“She was so wonderful when you got your call, patiently, calmly keeping me informed about the stages, what to expect, what were the good signs, what to worry about & what to cheer.

“All the way through your surgery and recovery she stayed in touch, answered my many emails and sent me random messages asking how I was doing – she had volunteered herself to essentially be my support as I didn’t want to bother your parents or K too much with my need for information and updates. It meant such a lot to me and I was incredibly appreciative knowing she was a message away to answer a question or calm a worry.”

That’s Emily: friendly, warm, generous and patient. And not just my Emily, that’s everyone’s Emily.

Em, you will be missed far more than most of us can understand, but we remain ever grateful for the joy and happiness your brought to our lives, for the connections and friendships you forged that will last long into the future, and for the blessing of finally understanding one of my favourite quotes:

“She was a line of poetry in a world of prose.”
Polly Toynbee

IF you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise:

If you can dream – and not make dreams your master;
If you can think – and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’

If you can talk with crowds and keep your virtue,
‘ Or walk with Kings – nor lose the common touch,
if neither foes nor loving friends can hurt you,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
And – which is more – you’ll be a Man, my son!

— Rudyard Kipling

Nothing sums up the way I’m feeling this morning better than this amazing poem. It’s probably my all-time favourite poem and I try every day to live my life by it.

Around 8am this morning, I anticipated being in the middle of deepest Wales, holed up in a little hotel not far from the foot of Snowdon, enjoying a celebratory breakfast with the 3 Peaks team and our nearest and dearest who were all coming out to join us.

Instead I woke at home, in my own bed, many hundreds of miles from where I wanted to be and feeling pretty rubbish about it, if I’m honest.

But, straight from my Life According To Kipling playbook, I’m off out for a celebratory breakfast with one of the team and their wife, both great friends who’ve been hugely supportive through the whole crazy rollercoaster of the last few weeks.

I am facing disaster and treating is just the same as I would have the triumph of completing the 3 Peaks. By celebrating I’m telling whatever higher power has deemed it necessary to prevent me completing it for the 2nd year in a row that I will not be bowed, I will not be cowed and I will never stop appreciating, loving and making the most of the gift I’ve been given. Wales or Wellingborough, it makes no difference to me.

If this post means anything to you, please share the sign-up link for the organ donor register for the trek – http://www.bit.ly/oli3peaks – by copying and pasting or sharing the link to this post. Help us make sure everyone who needs it gets the second chance I’ve had.

The plan was that by this time today ((around 4.30pm as I write this)), I should have been arriving at a hotel in Scotland with the rest of the 3 Peaks team to prepare ourselves to tackle the immense 3 Peaks Challenge this weekend.

As we all know, other things happened to get in the way of that.

I’m absolutely gutted that I’m not going to be with Ben, Dave, Gary and my bro this weekend and that I’m not going to feel the immense sense of achievement (and exhaustion) on Sunday morning that I anticipated feeling. What makes it worse is the fact that this is now 2 years in a row when my health has got in the way of the very same challenge, with the very same team of people.

I’ve dealt for many years with the ups and downs of my health, but I’ve always managed to come out of things with a positive spin and so it is with this. Despite thinking that after transplant I wasn’t going to face these kinds of disappointment, I’m finally starting to hear the sense in my own words, spoken at almost every event I speak at: transplant is not a magic bullet, it’s simply exchanging one set of problems for another.

Don’t get me wrong, there is nothing – NOTHING – that I would change about my life right now. Transplant has saved and transformed my life and allowed me to be the person I always wanted (and believed) I could be. It’s allowed me to do all the things I’ve always wanted (and believed I could) do.

Events like the things that have been happening recently serve only to remind me that although I have downsides, so does everyone else. And thanks to my transplants, my troughs are a hell of a lot shallower than before – and than many other people deal with every day – and my peaks are a hell of a lot higher.

So it leaves me simply to suck it up and move right along – knowing in my heart of hearts that not going this weekend is the right decision and knowing that something else will soon come along to excite, entice and energise me as I move forward.

As a result of recent events, my life is going through a lot of changes, but they are all enormously exciting and I know that the best times of my life lay ahead. It’s time to knuckle down, get on with it and start taking my first steps forward to the brave new world to which I’m being introduced.

If you’re reading this, you probably already know that I’m currently residing in Harefield Hospital following a ruptured cerebral aneurism on Sunday. Here’s the lowdown:

Sunday night, around 8pm, just as I was returning from my dinner break to put the final touches to the project that was due in on Monday, I developed a sudden, severe headache at the top of my neck where the spine meets my skull. Within minutes, it had spread right around my head, which alternated between feeling like someone was drilling into it and my brain trying to explode out of it.

By 8.30 I couldn’t function and was laid on the bed in pain, feeling sick. By 9.30 I’d started vomiting and wouldn’t stop for the next 24 hours.

After failing to keep down one dose of immunosuppression and knowing the morning dose wouldn’t stay down, either, I headed in to Harefield where they rapidly took a CT of my head and found nothing.  To be on the safe side, they then opted for a lumbar puncture (or spinal tap) to see if I had signs of blood in my cerebro-spinal fluid ((NB – blood in the CSF is NOT a good thing)).

Although clear to the naked eye, tests that returned on Tuesday confirmed the presence of blood and, hence, a probably bleed on the brain.

Since Tuesday, I have been improving progressively and now feel right as rain and ready for action. The doctors, however, disagree.

It’s extremely unusual to have any kind of bleed like this at my age ((a tender 28 until next Wednesday)) and the obvious concern is that a small aneurism (pocket of blood) had a small bleed that caused the initial headache, but could fully rupture at any time and cause more life-threatening consequences.

Personally, I’m not worried about that at all. Harefield have been trying for the last 3 days to get me transferred to a specialist neuro unit with little success, which indicates to me that none of the neurosurgeons who have looked at my file are overly concerned.

That said, it’s obviously far too big a gamble to ignore it all together, so my current state of limbo is being sat in Harefield whiling away the hours and days until a bed becomes available for me at either Charing Cross or, more likely, the John Radcliffe Hospital in Oxford ((also my preferred choice)).

Without going into more medical and boring detail, that’s pretty much the skinny for now. No idea if/when I’ll have access to my laptop again when I’m moved, so there may not be updates as regularly as you may like, but the latest news will be posted on my Twitter feed as it comes in.

Finally, many thanks for all the love and support you’ve all shown over the last couple of days since we first made the news public, it means a lot to me and to K as well, who’s obviously had quite the time of it over the last week and is coping with her typical strength and humour.