Archives: Support

On Saturday, K and I travelled down to Covent Garden to help out some friends who’ve been working on one of this year’s Battlefront campaigns about organ donation.

Both of the girls concerned have siblings who have been saved by a transplant, so it’s hugely personal to them and one of them, Hope, is looking likely to see her mum go through the same thing soon.

Sarah has covered things in far more detail (and with many more pictures) on her blog, so I won’t rewrite the wheel (no, hold on…), but rather just say that for two young women to achieve what they did this weekend is remarkable in so many ways.

Both of them have been through huge amounts of emotional trauma with their loved ones in recent years and both would be forgiven for packing it all away in a mind-cupboard at the back of their brain to sit in storage, untouched for years to come. But instead, they choose to fight, to promote organ donation to as many people as possible and to set a new world record for the biggest number of sign-ups to the organ donor register in one hour.

I wrote last week about remarkable women I know; you can certainly add these two to the list.

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.

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 scan ((of the kind I’d had to Harefield the day I was first admitted)) 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 one ((meaning the sample was contaminated by blood from outside the CSF)) 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….

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.

I must apologise for the lack of updates. If I’m honest, it’s been a rough time lately and with all kinds of work pressures and the added physical trial of training full-bore for the first time in my life, I’ve honestly been questioning whether or not this was going to happen at all.

I’m delighted to announce, however, that a major pharmaceutical company have agreed to fully-fund the 3 Peaks trip and that we’ll definitely be headed north to Scotland on Friday 3rd June to begin 24 hours of mountain-climbing, mountain descents and driving in between.

I was recently featured in another article online to promote not just the trip but the amazing support the guys at Topnotch Health Clubs have given me, including invaluable training advice and nutrition tips.

Really, though, there’s only one thing that stands out today, with 7 weeks to go. Today in the gym I ran, comfortably, for the first time in my life.

After a 15 minute session walking at speed on an incline on the treadmill, I spent the final two minutes jogging on the flat and for the first time ever – absolutely literally – I didn’t have to stop from feeling out of breath, sore in the legs or with chest pains ((not heart-attack chest pains, but I used to get a lot of pain across my scar when I tried to run)).

If nothing else, I’ve proved to myself and my donor that these new lungs are being used for the very best they can. I’ve never been fitter, never felt better and never been able to take so much on my plate as I have at the moment.

I cannot describe how amazing and brilliant this feels. And I cannot express my gratitude to my donor and their family for giving me the chance to feel like this. If you haven’t already, show your support for me, for the trek and for organ donation by signing-up and/or reTweeting/sharing the dedicated sign-up link from NHSBT, http://bit.ly/oli3peaks

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.

It’s been a while. In truth, I didn’t want to blog until I could find something positive to put down on these pages. And after a month like January, that’s been very, very hard work.

In addition to the funeral of K’s aunt, who died in late December, this month has seen us lose Jess (as detailed in my previous post) and then, last week, a very close friend’s baby brother, too. It’s been an absolutely heart-wrenching start to the year, especially after 2010 began with such excitement and promise.

I’ve also been hinting and nodding towards a new project which was supposed to be up and running by the end of January, that still hasn’t taken off. However, the reasons for that delay are more exciting than they are dispiriting, but all the more frustrating that I can’t share any details of what’s happening just yet.

One element of the project I can talk about is the attempt – along with my band of merry men – to complete the 3 Peaks Challenge in May this year, the weekend before my 28th birthday. It’s a truly daunting task and the most common reaction I get when I tell people about it is, “Why?”.

So I’ll tell you all now to prevent the mass of comments and emails about it following this post: because I can. Because I’m now able to push myself physically; because I’m able to see what my mental strength can carry me through; because I survived when others didn’t and have been given the perfect opportunity to do the things I want to do; because I can help to show the world just what an amazing difference organ donation can make to someone’s life.

This time three years ago, I was still recovering from Christmas and wondering if I’d see my 25th birthday. From then to now I’ve been able to go the kinds of things I only ever dreamed of and pushing myself physically and mentally through the toughest of challenges is something I’ve always wanted to do. And now I can.

There will be more details on the Challenge itself as well as the wider project as things progress, but today felt like a good day to sit myself down, slap myself round the face, pull myself out of my funk and start moving forward with the gift that is another year of life. Today was my first session at the gym in preparation for the 3 Peaks and it hurt like hell – but the pain of physical endeavour pales in comparison to the pain that my friends and their families have been through in the last month.

This is for everyone who can’t, everyone who wants to and everyone who never will achieve their dreams.

The turn of 2010 was filled with so much promise. Despite the difficulties of 2009, the challenges, the ups and downs, I’ve been incredibly excited about the prospects for the new year. And I still am.

But not all great things can come to pass and, following my previous post, most of you will now be aware that Jess lost her fight late on Tuesday night. After four years on the waiting list (two years longer than anyone ought to survive after being listed), Jess was just too weak to stand up to the rigours of the massive transplant surgery she underwent at the end of December.

A fighter to the last, she was up and about late last week, starting to be moved around by the physio, but she was hit by insurmountable post-transplant complications that her body just couldn’t cope with. She died peacefully with her family by her side.

Tributes have been pouring in on Facebook, Twitter and all over the news pages and TV channels which followed her story so closely. Many, many people have been affected by Jess, some who never even met her. Everyone is now feeling the overwhelming sadness and sense of lost that is infinitely magnified for her family.

Jess death will not be in vain, that much is clear. Despite the grief throughout the community, campaigners who’ve worked with and alongside Jess have already got their heads down pushing forward into new plans, ideas and ways to ensure that no one in the future has to wait until their too ill to receive a transplant.

As for me, the pain of losing two friends in two months is strong, but not as strong as my determination to make the most of the new life I’ve been given. The new project I’ve been working on for the last couple of months is finally coming to fruition and I’m pulling together several strands of things I’ve always wanted to do.

Here’s to a 2010 that serves not only to bring health, joy and happiness to all of us, but also to honour the memory of all those we’ve lost. Take care of yourself and remember to try – hard as it my be – to smile through it.

I’ve been struck again by one of my intermittent bouts of insomnia and have – as usual on nights like this – found myself sitting and contemplating all around me.

In particular, I’ve been reading back over this blog entry from the summer and going back through the last few months on my Facebook. I wanted to break into the “real world” and do something that felt like a tribute to my donor. I know now that the decision to go to Liverpool was made in haste and a fog of ambition and clouded judgement.

I can’t regret that decision, though, as it’s left me in a place now that’s so much happier than I was before I left. Being away has made me realise what it is I want to do, but more than that it’s shown me that I have the knowledge, drive and courage to pursue it.

I’m immensely lucky to be surrounded my my wonderful family, my always-supportive friends and, of course, my wonderful K. Since getting back from Liverpool I’ve been happier in my life, my house and my skin that I can remember for a long time.

At the same time, thinking about the future has made me think about all those around the world less lucky than me. I lost my friend Jo just a few short weeks ago and said my final goodbyes last week and knowing that her family face Christmas without her is heart-wrenching. Added to which I’ve got one friend in hospital over Christmas, another friend’s baby brother in intensive care and two more friends facing the very real possibility that this will be their last Christmas if their transplant doesn’t come in time.

This time last year, my brother was fighting in Afghanistan in one of the longest and most protracted operations of our combat there. On Christmas Eve, in an experience I’ve never had before, I was overcome by emotion during the midnight service thinking about him and the dangers he was facing. Without realising, and something I can only attribute to the kind of sibling bond I’ve always derided, I woke on Christmas morning to a phone call from my parents to say that he’d lost one of his closest friends right by his side that night.

In truth, despite our hardships, my family is undoubtedly one of the luckiest and most blessed in the world. I’ve fought and won battles within my own body and been lucky enough to be given a second chance at life. My mum has battled her own illnesses and come through with flying colours and my bro has fought and survived one of what is turning out to be the bloodiest wars in decades for the British Armed Forces.

I’ve been blessed by so much happiness in my life and as Christmas approaches with people living in fear, in hope and in grief, I realise more than ever that now I know where I’m going, it’s time to put the pedal to the metal and get my arse there.

I can’t wait to get started. Here’s hoping that the New Year brings all of us the things we want most in life and, should it fail to and instead present us with more, deeper challenges, may we all have the strength to fight, battle and rail against them and emerge victorious this time next year.

As a wise man once prayed: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

Merry Christmas to you all, and a Happy, Healthy, New Year.

I don’t much like blogging from my phone – it’s a bit tiny to write lengthy missives on (given my propensity for verbosity), but right now I don’t want to wait another day until I can access a computer.

A very good friend of mine and amazing fundraiser and supporter of LLTGL is very, very seriously ill. Like I was, she is waiting for a double lung transplant and has held on despite terrible health for a remarkable 4 years on the waiting list. When you consider that you’re only supposed to be listed when you have a life expectancy of less than 2 years, that shows you how amazingly she’s doing.

Sadly, things aren’t looking great. She was rushed into hospital at the end of the week struggling to breathe and is now reliant on her non-invasive ventilator to keep breathing. Her lungs are quite literally unable to cope with the demands placed on them by constant infection and the ravages of CF that she fights daily.

All of her friends are trying to do everything we can to help, but there’s so little we can do.

One thing at our disposal is the power of words and friendship. As Jess’s friends we are all talking to all of our friends to encourage people to sign the organ donor register and to tell everyone they can to do the same.

If you’re on Twitter, post the above link along with #savejess or tweet about her @Jess_19 and tell people about her.

If you’re on Myspace, Bebo or Facebook, put Jess and the link in your status updates, even link to this page to show people what you’re shouting about.

So much of Jess’s fate now rests with the doctors and medical teams looking after her and her ability to keep fighting. But it also rests on the courageous decision of one single person to give her life after theirs has passed.

Please, please, please do whatever you can to help give Jess the same chance of a better life that I’ve had and am currently making so much of.

Thank you.