Good morning my name is Tom how can I help you?
The last two weeks of our lives. Remarkable. Rally-car rapid.
The geography alone has been challenging. We’ve been speaking out about Sepsis, PTSD and resilience. We’ve been in Oakham, Leicester, London (twice), Swansea, Manchester and Worcester. For a quadruple amputee, the physical challenge of travelling like this is considerable in itself. In this fortnight, we’ve travelled a thousand miles, slept in five different hotels, parked in twenty different car parks, drunk fifty cups of coffee and shaken several hundred hands.
We’ve been part of BBC Panorama’s ‘Britain’s Sepsis Crisis’ edition, viewed by over 3.5 million. We’ve been on ITV’s Good Morning Britain interviewed by Piers Morgan and Susanna Reid, which has a daily reach of 6.5 million. We’ve appeared on Jeremy Vine’s Radio 2 show, with another 7 million listeners. Our book ‘Starfish’ about our Sepsis journey has been serialised in the Daily Mail, which has 3 million readers daily, plus another 14 million online.
We’ve spoken at NHS meetings featuring short versions of our film, and at a longer Q&A after a full screening. We’ve been to our local radio statio, Rutland Radio, for a long, intimate interview and Nic’s also appeared solo on BBC Radio Leicester with our favourite presenter Ben Jackson. Him wth the voice. He’s incisive and he cares.
OK. Steady now. It’s really been kind of (good) crazy. Turbulent at times, space shuttle shaky. Amazing images remain in my mind’s eye. The view from the back of a beautiful Mercedes being driven across London at dusk, the Millenium Wheel against a dying blue autumn sky, the challenge in Piers Morgan’s steely blue eyes. Jack Dee and Steve Wright squeezing awkwardly into the lift at Broadcasting House. Oh yes, how we laughed.
The stuff in my bag when I travel. My i-phone and the stick I use to prod the keys. Because, I don’t have hands. Drinking straws, because I can’t drink without them, hydrocortisone, because if I don’t have that, I fall asleep. Hospital letters about my cataracts. A stale chocolate bar. Fifty p and a picture of my children. Toilet thing. Only Nic and I know what that is.
From the train in South Wales, we saw the industrial wreckage wrought by unbridled unconscionable, capitalism on a proud, devastated landscape. The scenery there looks like my reconstructed face feels. Gouged out. Ugly. Wrong. You wanna close your eyes and not look at it. The terrible scarred legacy of those mindless Conservative governments. My broken face. Yobs, they were. Thatcher’s yobs. Later the same day we met and talked to hundreds of nurses, doctors and clinicians on the front line in the battle against Sepsis.
I saw a new flash of strength and confidence in Nic as I handed over the mic for her to speak. It means so much to me that she can be a voice for all the millions of carers who do so much to sustain ths country. And boy, does she have a story to tell.
We had dinner with a friend in Cardiff and my leg was so painful all evening I was crying inside, but I didn’t let on.
Premier Inn. First class, it wasn’t. Lenny Henry, you’re having a laugh. We had a bleak Best Western breakfast.
I saw a young homeless man in Worcester city centre building his cardboard shelter for the night, then the heartbreaking dignity and despair in the forced smile of a mother who shook my plastic hand and told me that she was OK even though her baby daughter hadn’t survived her post-natal sepsis. Life, love disappearing, gone in moments, people we loved, now unnreachable.
Bereavement makes us grow strong even though we don’t want to. We kind of hate ourselves for it, and it brings hardness. Acceptance. It binds the spirit.
We are mere mortals. At the Royal Society of Medicine in Wimpole St, London W1, we met our literary agent who handed us a carrier bag full of copies of our newly published book. We signed some on the inside front cover, like proper authors. With kind regards. I felt humble when I was doing it. Also, a little bit frightened. My mum would have been annoyed with me, but she’s dead now. There are intimate secrets in that book, things I maybe shouldn’t have shared. Don’t think badly of me. Please.
What a journey. What a life. Except, I know deep down this is probably only temporary. Within hours, I know we’ll be travelling back at speed to Rutland, on the cheaper slow train that stops at every station. Cambridgeshire, Lincolnshire, flat, endless, it goes on and on like the memories that never leave me alone, uncaring. Sidelong. Sliding. Huge blinding golden sunsets over fields that spread out absolutely forever. Then tomorrow my writer life will vanish, I’ll be back at my desk the call centre, then all this attention will fracture into a thousand splinters – and be forgotten?
Good morning my name is Tom how can I help you?
No. I think, by now, we’re in too deep. Too much skin in the game, already. Because, this Sepsis thing is a huge global story, impacting millions, costing nations billions, decimating families. It’s as big as Lincolnshire. Big like the sun, the moon and sadness itself. Even conservative estimates put the annual death toll at 6 million worldwide. Read that again. That’s six million. In the UK alone, Sepsis is responsible for 44,000 deaths every year, yet 44% of the population have never even heard of it and so wouldn’t know how to react in an emergency. How crazy is that? With 30 million cases of Sepsis globally every year, there’s also the issue that doctors are fearful of the rising threat of antimicrobial resistance.
I’m shocked – and I have to live with it, every day. Dr Ron Daniels of the UK Sepsis Trust is perfectly right when he says that one of the fundamental problems is lack of clarity in terminology and classification of Sepsis – this masks the scale of the problem and means that funding to fight back has largely failed to materialise.
We must be positive. We have to face up to our problems, I’ve found, it’s the only way to be. We’re strong, aren’t we? We’re tough. Determined. And there are signs of progress. GP’s now have automated prompts alerting them to potential Sepsis cases, and staff are encouraged to think of Sepsis in response to a high national early-warning score. Ambulance teams now routinely alert hospital emergency services of incoming Sepsis patients, and there are incentives for hospitals to reward good practice in Sepsis care. As a result, mortality rates in Sepsis patients admitted to intensive care are now falling, down from 33% a decade ago to 27%.
So. We’re doing it. We’re on the case. We keep on talking, we keep on travelling. We get on the train, we drive forwards in the car. It doesn’t matter how we feel, this is important work: in fact, it’s the challenge of our lives. With our words, with our conviction, with our testimony, we rejoin the daily battle to save limbs, lives, souls.
There was a time, of course, when none of this mattered to me. When I was younger, I was hugely fit and strong, and I thought I’d live forever. I used to run so fast down the escalators on the London underground, my feet would hardly touch the edges of the steps. Then I was layed flat in my bed at Addenbrookes hospital, when I came out of my four month Sepsis coma. The doctors tried to tell me over and over again what had happened and why, but I couldn’t understand it or take any of it in. I didn’t mind about Sepsis then.
The ony thing I really cared about was Nic, this beautiful beautiful wife I had, and my two precious children.
But after my Sepsis, because they were still in my life, I knew I could face anything. I knew I had to get up and walk, get some kind of job, try and make things better. Now I walk on plastic legs, with feet that creak as I slowly proceed. I shuffle. I struggle to do the zip up on my trousers with my myoelectric hands.
But all this talk talk we do, Nic and I, I hope it’s helping others understand.
I’m checking the diary, reaching for the car keys. Where next?