February 4th 2011
Mr ENT and me: part 2
“He sounds like Darth Vader”. My friend Neil’s young grandson looks up from the intense concentration of his efforts at painting circles to deliver this verdict on my voice, when the topic is under discussion by the adults. Out of the mouths of babes ….
I’ve noticed that children react immediately to how I speak – that it is different or unusual – whereas most adults don’t (or rather, don’t make their reaction obvious). As we wait outside his consulting room I wonder how Mr ENT will react. I don’t see him as a Star Wars fan.
It’s a bit misleading I guess to give Mr ENT an entry title all to himself. Today is not just about the voice. In the morning we’re in Oxford for the results of my first post-radiotherapy scan. The oncologist asks how I am and I unload a commentary on all my aches and pains. I think I missed a cue – this is a greeting rather than a specific question. But she humours me and explains that radiotherapy tends to damage nerve endings and the pains in my back and chest are probably due to this. She waits for me to digest this, then asks the big one; “Would you like to know the results of the scan?” I look at Annie and nod. “There’s no sign that the cancer has returned”. I’ll have another scan in 3 months. Then 6 months. Look away now if you don’t like slushy stuff, because once we’ve left the consulting room Annie gives me a big long kiss. Well – why not?
It’s only when we drive out of the car park that I realise just how much of a strain all this is. I’m not aware how tense and apprehensive I’ve been in the days leading up to today – until that tension and apprehension goes. Uncertainty casts a long shadow.
Neither of us will ever be able to get to a position where we allow ourselves to think the cancer will not return. Because it did – against all expectations and without any warning.
And so to Mr ENT: “I’m very disappointed. I expect you are too”. And he is – that is quite clear. He has another poke around my voice box with a camera and we study the results. I can see a difference from the first time. The injected cord has clearly put on weight – and – something both Annie and I notice – it vibrates. Just a little – but a vibration none the less. When we first saw video of this cord it did not move at all. So there is some improvement.
He explains that the problems are down to my “particular anatomy”. Owing to the shape of my mouth, Mr ENT has not been able to get his needle into the centre of the cord – where it needs most help. He’s managed to inject into the ends – and both cords touch there. But there is still a gap in the middle.
It strikes me that false teeth would be a great help here because by removing them, the (rigid) tube through which the microscope and needle pass would have a better line of sight. And a lower jaw that protrudes by a good couple of inches wouldn’t do any harm either.
We discuss another procedure – thyroplasty. A silicon implant is inserted from the outside of the neck to move the cord nearer to the middle. The risks are different this time – it can ‘emerge’ into the throat and I end up choking. It would be great if he could put a nut on the outside and I could just screw it in and out as needed.
If there had been no improvement at all, Mr ENT would have suggested a thyroplasty as the next step. But he favours another collagen injection. “I’m willing to do this again – if you’re up for it”. Oh I’m up for it all right. I sign the consent form.
I decide that I’m going to adopt the Soyuz approach rather than the Apollo approach this time. You may recall that during the space race of the 1960s the first we knew that the Russians had actually launched a space rocket was if it crashed (or if the boys of the 6th form at Kettering Grammar School spotted it first – which they usually did). We rarely knew of a launch beforehand. But the Americans sold ringside seats and invited the World to watch – and so we saw their failures as well as their successes.
This time I’ll go quietly – no big announcements – and the World will know soon enough if it works or not.
February 15th 2011
Me: “It’s Valentine’s Day and my heart is broken; could you mend it please? – Because no one should have a broken heart on Valentine’s day”.
Nothing. Oh Gawd – have I misjudged it again? This little speech was Annie’s idea. It’s worse than playing the Glasgow Empire. He’s taking my pulse. Eventually he looks up – says nothing but lays a reassuring hand on my shoulder. Contact.
It really is Valentine’s Day and my heart really is broken. And I’m asking this man to fix it. And fix it without Warfarin. He confers with his team; “You can go home later today. We’ll put you on Amiodarone and Aspirin. I’ll see you in 3 months time – you need to take these till then”.
I’m not sure exactly when it started – sometime in the middle of last week. I felt a bit odd on Wednesday – dizzy spells, lack of breath and incredible tiredness. Then Thursday night I’m woken up by what feels like an earthquake (I once stood on an earthquake simulator at the Geological Museum so have a rough idea). My heart is beating steadily but every so often there’s a big bang. And it goes on like this – beat beat beat, bang – beat beat beat, bang. I wake my live-in heart monitor. She listens and confirms that it’s not beating as it should.
I don’t notice it much during the day, but Friday afternoon I decide to see my GP. With a second voice procedure possible in the next few weeks I don’t want to risk anything going wrong. It’s 4.40pm (time will shortly become significant) when we eventually get to see him. He clips a small monitor on to the middle finger of my right hand – it shows what he calls an ectopic heartbeat – the regular ones followed by the big one. He wants me to have an ECG straightaway but as it’s late on Friday afternoon and the Practice Nurse (when will she get it right I wonder?) has gone home. He sends me off to the hospital. I feel a sense of dread. I explain that we’re going out to a concert that evening – can it wait till Saturday morning? He can’t see why not – “I’m not worried about this but you should get it checked out”. He suggests we go to the ‘Walk-in Centre’ at the hospital rather than A&E. We decide to go to the hospital – we have until 7.00pm. The Walk-in Centre is a bit like A&E except it’s for people who’ve not had an accident or an emergency. And there are no drunks.
The Centre is busy by the time we get there – and apart from us and one other man the rest are parents with babies/toddlers. We make our way around the yellow hazard signs on the floor, which graphically illustrate the state of health of the young clientele. They operate a system of urgent cases taking priority and we’re seen after about ten minutes. I can see people wondering how we’ve got in so quickly. I have an ECG and then go back to the waiting room until the only doctor on duty can see me. We’re called after about 15 minutes. I’m beginning to feel a little embarrassed and guilty. It is clear some of these people have been waiting for ages.
He’s not happy about the ECG printout. He points to the odd beats and says; “this is a cousin of AF” (atrial fibrillation). He checks my ankles for swelling. “I need to talk to someone – go back to the waiting room and I’ll come and see you”. After about ten minutes he calls me over and sends me off with a letter to the Critical Decisions Unit. CDU is a bit like A&E – except it’s for people who’ve not had an accident or an emergency. And there are no drunks.
It is utter, utter chaos. Annie later describes it to a friend as a cross between Euston Station at rush hour and Hell. Doctors and nurses are squeezing past each other in the cramped space – there are beds in what look like the corridors and a white board with ‘Triage’ written on it. That word always reminds me of M.A.S.H. And a field hospital under constant bombardment is just how it feels.
I explain that we’re going out that evening (it’s now 6.30pm – and we have all the tickets) and ask if we can come back tomorrow. Although the receptionist is doing at least two jobs at once, she is extremely sympathetic and tries to help. But no. Once you’re in the system, you’re in the system. The only way to get to the concert would be for me to discharge myself and then start the process all over again.
I think about it for ten minutes. Yet again the fall-out from this poxy disease has messed up our social life. I decide to stay and Annie rushes home to collect the tickets and deliver them to our friends. No sense in spoiling their evening. Although we say that we’ll be there for the second half, I know that we won’t. I make my way to the waiting room. Some people have been here since midday. At around 8.00pm I have another ECG. Then back to the waiting room. Called to see a doctor. My heart has now gone into AF with a beat of around 160bpm. My ankles are examined, pulse is taken and I’m returned to the waiting room. After about another hour I’m called to see a consultant. He examines my ankles. I’m beginning to think they all have a foot-fetish. It turns out the AF+swollen ankles = heart failure (or the first signs of). Although my ankles are not swollen, it’s clear I’m not going anywhere and by 10.00pm Friday evening I’m admitted to the cardiology ward.
Annie goes home to get a few overnight things. As an Egyptian nurse welcomes me to the ward, he tells me first why Mubarak must go and then says; “I have good news and bad news. The good news is you’re in the right place. The bad news is that the consultant is not in till Monday. You never want to get admitted to hospital on a weekend”.
I’m hooked up to a heart monitor, which sends a signal back to a screen by the nurses’ station. “Every breath you take … I’ll be watching you.” There are eight beds in this particular bay. Most are elderly – but a couple are younger than me. The older men are very sick – their coughs and groans amplified through their oxygen masks, their fears manifest by calling and crying. I know all this because Annie has forgotten to bring my earplugs.
At around 4.00am I’m woken by a slap on my leg and someone asking me where his money is. He sits on my bed and won’t go, talking non-stop about his money. Eventually a nurse comes over and takes him back to his bed. “He’s a bit confused”. He’s not the only one.
It’s bit like a POW camp; none of us are here through any fault of our own and we are all desperate to break out. Some of the guards are friendly – some are not. Emma (my bike buddy) comes to visit on Saturday afternoon – she’s shocked by the way one old man is spoken to, his pain and distress cruelly dismissed. Every time I find myself in a ward like this it reinforces my determination never to end up in hospital as an old man. I tell Emma that, like the elders of the Lakota Sioux, when I am no longer of any use to the tribe, I will do as they do and simply walk out into the forest. Of course, these days, what with duvet jackets, GPS and mobile phones, it’s not really going to have the required effect.
One particular old man seems barely conscious. Each day his son (perhaps late 20s early 30s) comes in at lunchtime to feed him, wash him and generally look after him. He stays until after supper. He is, apparently, the old man’s only carer. I have never seen such devotion and patience as that practiced by this young man. It’s all the more noticeable because the (grown up) children of a couple of the other older men are in and out in a flash, staying just long enough to get the latest from the nurses. They stand fidgeting at the bottom of the bed, not even bothering to get a chair and sit down.
There’s a man in one of the beds opposite who’s a good deal younger than the rest – perhaps mid-30s. He must be poorly because he struggles to get out of bed and needs a walking frame to get to and from bathroom. He makes his way past my bed on unsteady legs and often needs a helping hand to get back. On Monday morning I notice that as soon as he wakes he sits on the bed and puts a coat and trousers on over his pyjamas. He then gets back into bed, pulling the covers up tight. I figure he must be really cold.
Mid-morning a couple of physiotherapists do their rounds. Hospital physios are a breed a part – a bit like doorstep evangelists – no matter what you say or do, you just cannot get rid of them. They must be trained in the same perseverance techniques.
One coaxes the man in the coat and trousers out of bed. His target for the day is to walk to the end of the ward. Slowly he shuffles across the floor gripping the walking frame tightly until he’s reached his goal. Just at that moment the mobile phone on his bed rings. He drops the walking frame and rushes back across the room. The physio is dumbstruck – clearly not quite believing what she’s just seen. The man grabs his phone – a hurried conversation – and he’s dashing from the ward. As he disappears down the corridor the physio is calling after him; “but we haven’t done the getting out of the chair exercise yet ….”
I see the consultant on his rounds about noon. The choices are to mend my heart with drugs or with another electro-cardio version. I’ve been on a high dose of Amiodarone since Friday night and he thinks it’s done the trick. My heart rate is down to 89bpm. Still a bit fast but it’s back in its normal rhythm. Another ECV is risky without a course of Warfarin first, because there may be clots in my heart. I tell him about the voice op and he decides to stay with the drugs regime and lets me go home. I’ll have Aspirin instead of Warfarin and just hope Mr. ENT is OK with this.
The man in the coat is back with a takeaway and a bottle of beer. It appears that as it’s Valentine’s Day he went into town to buy flowers for his girlfriend. The power of love eh?
February 22nd 2011
Déjà Vu – Part 2
The CDU receptionist does a double take – then – a few hours later when I’m back on the ward, the man who sleeps with his coat and trousers on, also does a double take; “you’re back here?” I nod. “But you look so fit”. I give him my best, modest ‘aw shucks’ look. Less than 2 days after being discharged, the Earth moved again and I’m back in hospital, this time via A&E.
I’m eventually moved to a new(ish) Cardiology ward. I’m plugged in to a heart monitor and stay that way for 2 days. And then – after months of anticipation – I finally get to meet Consultant Cardiologist Dr K. He smiles; “Hello – it’s nice to put a face to a name – I’ve been hearing a lot about you”.
Regular readers – or those who can at least remember back as far as last August – may recall the Dr K is the original cardiologist I was referred to after the lung resection. But the referral letter never arrived and although Annie delivered a photocopy of our copy to the hospital, I appear to have been lost in the system.
He looks at all the outputs from the various ECGs. After a few moments of studying the graphs and consulting with his team he says; “This is Atrial Flutter – we can cure this”. He proposes Catheter-Ablation and explains the procedure; a thin tube (a catheter) is inserted into a vein or artery in my leg and then pushed all the way up to my heart. Once in position a blast of radiofrequency energy then zaps the troublesome area in my heart that’s causing the flutter (the word ‘zaps’ is my invention; he used a more technical term but I can’t remember it).
There are risks – internal bleeding, stroke and totally screwing up the heart altogether, resulting in the need for a pacemaker. And occasionally – a state not conducive to life. It can also be a bit painful as it’s only done under a local anaesthetic (to the leg). General anaesthetic interfers with the heart rate so can’t be used. Great. He looks at me clearly wanting a response; “it has a 90% success rate” I put on my plucky, seen it all face: “Well – it can’t be any worse than what I’ve already had”. We laugh.
As if this wasn’t enough I’ll need to go back on to Warfarin. I explain about the voice procedure and the need to avoid Wafarin. We to and fro – if the voice procedure is immanent – say in the next 4 weeks or so – can I postpone the Ablation? He’s not happy – by delaying I’m increasing my risk of heart failure.
In the end I give in. I’m too tired to argue. And too breathless. He’ll put in a request for an urgent Ablation at the JR in Oxford; he increases the dose of Aspirin to help the Warfarin. He also gives me Beta-Blockers and stops the Amiodarone; “It’s not very effective for Atrial Flutter”. Then why have I been on it for the past 7 months or so?
So much wasted time. The voice op is postponed until – I don’t know when.
In the meantime my INR needs to lie between 2 and 3 in order to have the ablation treatment. After 3 days of Warfarin I get the first blood test results; 3.7. Not far off target. I reduce the dose and have another test in 2 days.
Reasons to be cheerful no. 706
After weeks of waiting I finally get a rear wheel for my new mountain bike project. I have all the bits now. Time for some fettling.