Archives: Family

A good friend of our family died suddenly and unexpectedly last week. It’s tempting to trot out that old saying:

“Don’t cry because it’s over!

Smile because it happened!”

Ludwig Jacobowski

If we hadn’t had his many years of love and friendship we wouldn’t feel this sad, so we should be grateful he was in our lives at all. Anyone who’s experienced grief, though, will know it’s not always that easy. 

Gratitude is hard when things are tough. Whether we’re riding waves of grief, battling chronic pain or waiting interminably for a transplant that may never arrive, finding things to be grateful for can feel like a fool’s errand.

The trick, I’ve discovered, is to find the smallest possible thing to be grateful for. 

Be grateful for the phone in your hand that lets you distract yourself from difficulty on TikTok, or for the chair you’re sitting in while you’re doing it. Be grateful for the tea you’re drinking, or the mug you’re drinking it from. Be grateful for the pen you’re writing with, or the computer that lets you buy a condolence card without going to a shop.

Gratitude isn’t reserved for big things. Once we know that, we can find it wherever we look, even if our eyes are clouded by tears.

Tonight we had a final family meal before waving my bro and his wife and daughter off for their work-related emigration to Europe. It’s sad to see them go, but I’m excited at the exciting new challenges that face them, not to mention how much our niece will benefit from growing up in a different culture and country for the first few years of her life.

I’d love the chance to do something similar, but I know I’m probably a bit too much of a wimp for that. Still, having a nice gathering centred around great food (as all Lewington family gatherings always are!) was a great way to say goodbye and wish them well. Bro and Dad are now traipsing across Europe to get their car over there and then flying back later in the week to pick up the rest of the gang and take them out there. In summer, K and I get to drive out and deliver the new car they have on order, so I’m already grinning ear-to-ear just thinking about it. Summer holiday planned already!

It’s odd that I loathe Valentine’s day as much as I do and yet always really like Mothers’ Day. I hate being told when to express my love for my wife, and yet I love that there’s a whole day devoted to mums. Feels weird.

But it was lovely to see and spend time with both of my mums – Mummy L (mine) and Mummy H (K’s) – and to let them know how much we appreciate them and everything they have done and continue to do to support us and show their love to us. I like to think they know that we love them and appreciate them every day, but just in case we bought them both flowers and had a lovely Mothers’ Day cuppa with them to say thank you.

It’s also a day I reflect on all those people who are desperate to be mums but aren’t because quirks of fate have taken that chance away from them for one of very many reasons. Those mourning the loss of a baby, those trying so hard to have one and those who know they will never be able. All of these people are always in my thoughts on Mothers’ Day even while we smile and enjoy the mums we’ve got.

What did you do for you mum today?

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.

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 today1, 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.

1. around 4.30pm as I write this [↩]

Following my post from last Thursday about my admission to hospital, at the end of which, you will remember, I was waiting for a transfer to a neuro unit somewhere in the UK, the epic story of a simple headache continued for the next 6 days before finally reaching an inconclusive conclusion on my 29th birthday this last Wednesday.

I was (eventually) moved to the John Radcliffe Hospital in Oxford, where their neuro unit is considered to be one of the best in the country. On top of which, it was significantly easier for my family to come across and visit than a stay in central London would have been.

The Saturday after I arrived I was prepped and sent for a CT Angiogram, which is a regular CT scan1 plus a big bolus push of iodine-based contrast-dye to highlight all of the blood vessels. The idea was to look for aneurysms or weakenings in the walls of the blood vessels that usually show as small bubbles of blood. The concern with any aneurysm is that it could rupture and cause major bleeding on the brain, which in turn can cause strokes or even death.

The didn’t find anything.

It was at this point that the suspected diagnosis was made clearer to me through the far more knowledgeable nursing and medical staff at the JR; they suspected what’s called a sub-arachnoid haemorrhage. Here’s a couple of quick definitions to save me boring you to death if you couldn’t care less about the rest of the medical jargon and info.

I then spent the rest of the weekend locked up on the ward on 4-hourly obs and not allowed to stray for more than 30 minutes and then only if accompanied by a family member. Strict isn’t the word, but then I suppose the kind of issues they deal with are much more serious than most of the hospital wards I have frequented in the past, where a minor hiccup is unlikely to lead to instant chronic brain failure or death.

On Sunday afternoon, I was told by the weekend doctor that he suspected the LP from Harefield had been a false positive from the two failed attempts before the successful one2 and that further tests were unlikely to be ordered.

To my surprise, then, I was consented for a cerebral angiogram first thing on Monday morning, with no real explanation of the reasons beyond the fact that it’s the best test to check or aneurysms. Clearly, the weekend doc wasn’t the one in charge of my case and made a slightly sweeping statement in leading me to believe all was well and I’d be on my way home as soon as the docs on my case could process the discharge paperwork.

Waiting around, nil-by-mouth, all day for a procedure you don’t know a huge amount about is slightly frustrating, but not nearly so much as being told ten minutes after lunch has been round that they won’t be performing it that day.

I would go on to have the full angio the following morning, but that’s a whole story in itself.

The epic adventure continues tomorrow….

1. of the kind I’d had to Harefield the day I was first admitted [↩]
2. meaning the sample was contaminated by blood from outside the CSF [↩]

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 fluid1.

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 age2 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 Oxford3.

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.

1. NB – blood in the CSF is NOT a good thing [↩]
2. a tender 28 until next Wednesday [↩]
3. also my preferred choice [↩]

This time in 4 weeks I should hopefully be nestled in my bed starting two days of recovery from the 3 Peaks Challenge and right now I’m hopeful, a little fearful and very, very tired.

Training has stepped up a notch, there’s all kinds of logistics to organise, a team-meeting with 5 of apparently the busiest people on the planet and I’ve still got to fit in work, quality time with K and a trip to Durham for a fundraiser for this years’ CF Week in aid of the CF Trust, a cause you’ll all know is close to my heart.

Today, though, that all blurred into fairly frank insignificance following Tor’s latest post on her blog following her seventh false alarm call for transplant.  I’ve written before on here about my false alarms, but also about how Tor inspires me to want to do better, to push myself harder and to achieve everything I can while I’m able.

One quote from her post today stood out for me, when she talks about her fears for the future, post-transplant:

I [am] worried that I … could never live a life that was enough to honour my donor.

This is a fear that lives with me every day. It’s not a fear that overwhelms me, but rather motivates me and gives me my ultimate drive to succeed, whether personally, in business or my personal life.

If my donor is looking down on me now, I want them to be proud of me. I want them to feel that they made the right decision in letting me live after they died. I want them to know just how much I value the gift I’ve been given and how I live each and every day in their honour, under their guidance and with their presence always around me.

That’s why I’ve started chasing the dream of the 3 Peaks and it’s why I want to keep pushing myself to do more.

The most common question I get when talking about the 3 Peaks is “Why?”.

I have two answers, both of which are exemplified in things I saw on Twitter today.  Number one (courtesy of the marvellous Sheri Candler):

Number two is this series of Tweets from a very close friend:

Just had call number 5 but no good for me. Gutted.

@Tor87

Feeling awful but thank you for keeping my spirits up, so many lovely friends. Please remember the amazing donor and their family today. x

@Tor87

God this has hit me hard. In lots of pain, breathing awful, body wont work. You cannot imagine.

@Tor87

Not only has Tor had to suffer yet another false alarm, but even while she’s hurting, struggling to breathe and exhausted from over 5 hours of travelling, she’s thinking of others.

And when she says, “You cannot imagine,” she absolutely means it. If you haven’t been there, you cannot possibly understand the rollercoaster of emotions that is involved with a false-alarm; being prepared to have your life changed forever before being told it’s not going to happen. And knowing that if it doesn’t happen today, it may never happen at all.

You want to know why I’m subjecting myself to 24 hours of mountain climbing following 3 months of hard training?

Tor is why.