November 5th 2010
Mr ENT and me
It’s the not knowing that’s worse. And now I know.
“You’re doing really well to move your right vocal cord across”. He invites me to look at the screen. I don’t really know what I’m supposed to be looking at. It’s a pink, slimy mass – moving slightly as I breathe. Then the picture changes as we move down into my throat – it’s a bit like one of those TV programmes where a camera team descent into an underground cavern – shadows and shapes made uncertain by the unsteady light of a helmet lamp. Eventually I see what turns out to be my vocal cords. They are not alike – one large and moving confidently as I make various sounds. The other – smaller, curved like a boomerang but going nowhere. A particularly loud noise from me brings the right cord across to meet its limp sibling. Not a perfect fit but enough to justify the comment above.
The verdict, when it comes – or rather my reaction to it – surprises me. The damage is permanent. But I’m OK – the uncertainty is over. Already my mind is racing ahead to plan B.
He offers a procedure to give me back a speaking voice. It’s quick and the results are almost instantaneous. He’s non-committal about singing – but I’m determined that if I can speak I can sing. I sign a consent form, he puts me on his list and it’s all systems go until he discovers I’m on Warfarin. He brakes hard. He won’t do it until I’m finished with the anti-coagulation treatment and my heart is fixed. And here’s the problem – the radiotherapy has screwed up my blood test results – they’re all over the place. I have to have 4 consecutive weeks with an INR between 2 and 3 before I can have the electro-cardioversion therapy. I’ve gone back up to 4.0 from 1.4. Even if I manage to hit the target for the next 4 weeks I’ll be lucky to get it sorted before Christmas. So the voice fixing will not now take place until the New Year – perhaps well into it.
I lower my sights, my expectations. Lying in the hospital bed back in late June it was the thought of singing in Milton Keynes Theatre in February next year that became part of my motivation for putting up with pain and discomfort. But that’s not going to be possible. Now I’ll be happy just to sing in the local pub without embarrassing myself or anyone else.
November 12th 2010
Radio Gaga; over and out
Varian 1 became a little temperamental towards the end. First a freeze on the computer screen, (probably a Windoze machine) and then the odd breakdown. When I arrive for my penultimate session it’s down altogether and I’m ushered off to Varian 5. I didn’t know Varian 5 (or3, 4 and 6 for that matter) existed. They’re in another part of the building.
As I’m shown into the room my eye immediately lights on a row of heads. There must be a least a dozen – made of lilac coloured mesh. They look very spooky in the subdued light. They look a bit like computer-generated heads – and I guess that’s how they originated. It turns out they’re for people having radiotherapy to the head. I look closely and they’re all different – aquiline nose, stub nose, high forehead, deep chin – each one is a real person.
And then I see what appears to be a body mould. I’m a bit taken aback; it’s child size.
I have nothing but admiration for the radiographers – they’re kind, reassuring and hardworking. They don’t stop – as one person is getting dressed, the next is waiting outside. I can see that organising treatment over 6 machines for what I guess to be around 150 people each day in such a way as to minimise delays is no easy task.
There’s something I need to raise with them – a matter of some delicacy. Applying the E45 cream to my chest as I do each night – I glance down for once rather than look in the mirror. That’s odd – the right hand side of my chest is burnt. There’s not a mark on my left. But the left is where cancer seedlings are located.
An awful realisation comes over me and I look in the mirror. How long have I been doing this? Every time I’ve applied the cream the redness has always appeared to be on my left. Doh! After cursing my stupidity I’m suddenly fearful; OMG – they’ve been zapping the wrong lung. Why didn’t I notice this earlier? I keep telling myself there’s a logical explanation – yes there is – they’ve made a mistake!
I play dumb; “this is odd – the skin’s burnt on the right but not on the left – I wonder why that is”. This in my best casual – just thought I’d mention it in passing/ I’m not really saying anything/ would you like a biscuit? – mode. A diagram is produced which show the trajectory of the beam as it passes across my body. It’s at an angle of about 45 degrees, which means it strikes the right hand side of my chest at the surface. There – I knew there be a logical explanation.
The experience has been very different from chemotherapy. Not as bad – there were days when chemo had me crawling round the floor – but bad enough. I haven’t had a cup of tea or coffee for about 3 weeks now. Just sips of water. And climbing the stairs to bed requires ropes, pitons and a bivvy half way up.
I’m glad it’s all over; I’ll have a scan in around 6 weeks to see if it’s working or not. I say my goodbyes; “I hope I never see you again”. They smile – they’ve heard it before – and we drive home.
November 24th 2010
I’m not really scared – a little apprehensive perhaps that it might fail because there’s a lot riding on it – but scared? No. Until we get to the risks. Apart from a heart attack and stroke, the heart may go into a “non-compatible with life mode”. Now I’m no expert – although I do have the Holby City boxed set, which I refer to from time to time – but even I can work out that this means ‘die’. The doctor is a little uncomfortable when I ask her if my analysis is correct. She prefers to concentrate on the minor risks – that my heart may revert back to its wobbly state “within seconds, months or years”. She tells me not to worry; ”you’re in the best place for this – we’ve got all the drugs and equipment.”
I know the risks – I spend hours peeping at medical websites from behind my sofa. I filter out what I’m not comfortable with and then creep up on it later. But here, when it’s writ large on a consent form which I am required to sign, there’s no getting away from it. I make my mark and a few minutes later I am on my way to the operating theatre.
It’s all been very sudden. Got a call last week asking if I could come in for the electro-cardio version on Tuesday. My INR is coming down – I plotted a graph (sad I know) of INR against time and added the radiotherapy dates to the timeline. Sure enough, as radio progressed the INR went up, peaked towards the end and then came down after the radio finished. As long as it’s not below 2 on the day of the procedure they’ll go ahead.
It’s a small ward, just six beds. And small ones at that – my feet hang over the edge as if to remind me that I’m not staying long. One way or another. There are five men around my age or older and a woman in her late 30s or early 40s I guess. While the screens may provide an element of privacy they do nothing to prevent the discussion of medical histories with the whole ward as audience.
The woman talks non-stop; “I’m a medical mystery doctor”. I say this not to mock but simply to highlight the difference between her and the rest of us. We sit on our beds, or on the chairs beside them, staring at a fixed point slightly below the horizon so that we can avoid eye contact with each other. God forbid that we should actually speak.
I wonder what we’re all thinking about as we sit here waiting our turn. I’m thinking about building a new mountain bike – there’s a suitable frame on fleabay and I’ve various bits and pieces in the garage. I need a project – something to take my mind off the here and now.
I have a blood test and an ECG (“we need to make sure you still need this”). My heart rises to the occasion by throwing a hissy fit and thoroughly misbehaving. My INR is exactly 2. So we’re good to go.
The most painful part is inserting the canula for the general anaesthetic. It takes 3 goes and my hands end up bruised and swollen. I’m awake again just 20’ after the anaesthetic is administered; “Your heart is back in its normal rhythm.” I’m taken back to the ward to recover. After a couple of hours I have another ECG. I’m a bit nervous – but this time my heart behaves impeccably. As far as I can tell it’s still a bit fast but it’s regular.
I’ll stay on warfarin and amiodrone until a check up in about 3 or 4 weeks time. If the rhythm is still regular I should be able to come off those drugs – and I can then get back in the voice queue.