Saturday, 24 April 2010

Looking back from 6 months out

Six months ago today, on the 23rd October, I was under the knife in the theatre at Papworth. In fact, around the time I'm writing this, 10:20am, I must have been pretty close to done as I was out of theatre by 11. I thought it would be a good time today to look back six months to the night of Thursday 22nd October, just before midnight, and to let you know how it all unfolded. I've never posted about the experience of the call, so I guess we're about to see how much I can remember... At the end of the first week in hospital I wrote, with a very shaky hand and unfocused eyes, a few scribbled notes to try and help me remember that time.

I'm awoken from a deep, ventilator-aided sleep, by the phone ringing. It's 11:50pm. It's one of those moments where the sound is incorporated in a complicated way into my dream and by the time I realise I'm awake and it is real, and I have wrestled the ventilator mask off my face, the phone has gone to answerphone. I'm hit by a wrecking ball of disbelief - it can't be yet, it's too soon - then - my mobile's going to ring in a second. I've been keeping my mobile charged and by my bed for the last 11 weeks in preparation for this impending call, and sure enough it starts ringing. I'm in the spare bedroom as I was having trouble sleeping in the harder main bed, and by this time I can hear Vicky is up and moving next door. "Oh God" I say out loud as the phone rings. Vicky rushes in "Oh God" she says. In blind panic I answer the phone and say "hello?" with a shaky voice. "Hello Will, it's Anne here from Papworth, the transplant coordinator. As you've probably guessed the reason I'm ringing is we have some lungs and need to get you here as soon as possible".

Once the call is over I start to really panic. It feels too soon, I don't know if I'm ready. Thoughts rush through my head and the one that seems to stick is "I could be dead in a few hours". I feel so alive now, struggling, yes, but alive - am I ready to take on that 10% risk of not making it through the operation?

Vicky tries to calm me down, to stem the floods of tears. We hug, exchange soft words, strong words, hold on tight. I ring Ellie, my sister, and tell her it is happening - we've arranged that she'll be able to drop everything and drive to Papworth to be with Vicky overnight. She tells me it'll all be ok, how much she loves me, and I just can't stop crying. I then ring my mum and my dad in quick succession. Dad will pick up mum in the morning and bring her to the hospital. They should be there when I get out of the operation.

Anne rings back from Papworth and says they can't sort out a taxi for me, and don't send ambulances - if we feel we can drive we should do that, otherwise get our own taxi. Vicky insists she's ok to drive and we get into our old blue Golf, simply because it is nearer to the house than the other car. During the journey I try to stay calm, try to get a grip on reality and get over the surreality of the situation. Am I really going to do this? Am I really going to let them cut me open and take out these lungs that I've fought with for 35 years?

We get to Papworth. It is very quiet, very dark, and we find our way to the back entrance we've been directed to over the phone. Vicky's carrying my bag with my essential clothes and drugs. I'm wearing my oxygen, carrying 'the monkey' - my portable oxygen concentrator. The door is locked. I ring Anne and she comes down to let us in. It's ten to one in the morning.

Moving through the silent corridors we whisper in conversation, talking about what's going to happen, where we are going, how things are with the donor lungs. They are looking good. We need to move fast. We arrive at Mallard Ward - I've never been to this part of the hospital before and it is all unfamiliar. In the darkness wink the lights of the monitors over each bed, keeping tabs on the sleeping patients. We are led into a ward bay with 6 beds, into the corner where there is an empty bed. We continue to whisper so as not to wake the sleeping patients. The curtain is drawn around the bed and we turn on the night light. In this strange, subdued half-light I am told that everything is looking really good, but we need to move really fast. Things are hotting up. Anne talks to us gently and asks me if I want to go ahead. This is the last chance to get out of this strange world and wake up tomorrow morning with nothing changed, with a ventilator mask on my face, with clogged up lungs, but with familiarity. I try to imagine how I'd feel if I said no, if I rejected this chance that may have come too soon but never got another chance. Of course I'll say yes.

A doctor comes to see me, goes through the consent form for the operation. He outlines the risks again and I think, really? now? is that entirely necessary? I've been told the risks and percentages several times before but there they are, in scrawled doctor handwriting on the form - survival for operation, 3 months, 1 year, 5 years. "Just sign here...simples!" he says, with almost a giggle at his own joke impersonating a stuffed character from an advert for car insurance. It seems so completely out of kilter with the seriousness of the situation, but to laugh somehow cuts through the veil of unreality and I relax a bit. I start to take on a sanguine attitude - whatever happens will happen, if I don't make it I won't know anything about it, being anaesthetised isn't like sleep, there's no perception of the passing of time, no dreaming, I'll just switch off and either wake up on a ventilator in ICU or just won't.

Bloods are taken. A male nurse takes me to a bathroom and hastily shaves my chest. I urinate. There is no time for a shower, no time to disinfect me and scrub me down. I am changed into a gown. I walk back to the bed and take my first dose of immunosuppression and some sedative medication. Anne arrives with a wheelchair - "we've got to get going - there are lots of people waiting for you". It's strange, I feel special and wanted - all these doctors and nurses roused from their beds as the call came through, so much action, unbelievable levels or organisation, cogs turning and donor lungs being assessed and removed. Vicky walks alongside as I'm wheeled out of the ward and through towards theatre.

It's the point of no return. I can see the anaesthetic room, people busily moving around, preparing. "All this for me" I think again, and feel privileged and strangely at peace. Vicky can't go any further. Anne leaves us and we talk for what is probably only two minutes. "See you on the other side", "love you so much", "you'll be ok". I even say what music I want at my funeral. Anne returns and says Ellie has just arrived, but there is no time, I can't see her. Vicky goes one way, to meet Ellie and to try and cope with the night and the wait. I go the other way into the cold, bright lights of the anaesthesia room, onto the preparation trolley, towards my fate.

to be continued...


  1. Dear Wim,
    Phew!! Thank you so much for relating all that - I'm just bursting with love and admiration for you both.
    I expect you know by now that we made it to Norfolk after Easter, but only for three days in the end so we didn't get a chance to see you. I've had arthritis in my hands (very minor health problem!) and didn't fancy the long drive alone so Scott did the driving. I'll be back in the summer and will definitely see you both then.
    It was lovely to see Ellie and the kids. Scott took some great photos. Emailing a couple of them to you.
    Are you still as well as when you last posted? Hope so, it was great to hear about you climbing hills.
    Very much love,
    Jane xx

  2. Wow! My hearts racing. Jesus Will, you're good at writing. You both are. Awesome blogging. Great to see you looking so well in the photos.

    Just back from being stuck in Lanzarote.

    With love, David.

  3. What do you mean 'to be continued'? I'm on the edge of my seat! I agree with Dave. That's some great blogging.


  4. For those counting, that's the second time you've had me crying at my desk, Will.

    Glad you're still here to tell the tale.

  5. Dear Wil,
    You are very very good at writing and I think that you should put all of this into a good old fashioned paper book!
    I need to choose the times that I read your blog carefully,-can't stop weeping at the moment!
    Like Nick South,I'm on the edge of my seat,reading your last posting was like watching a particularly gripping episode of ER...I will watch like a hawk for the next installment! Much love Rose

  6. I am also in tears. . . you capture how you felt so well! Very honest, very raw, very touching.

  7. Don't keep us waiting too long Will. Everyone is right, you both write honestly, clearly and well, and I think a short book - with photos of the scar! could help a lot of people in the same or parallel positions.
    Looking forward to seeing you this weekend

    Wacky's Dad

  8. Its the first time it has hit me what it was really like to go through with it all, Wim. I'm so proud of you.

    PS As others have said... a writing career awaits!