August 3rd 2010
drugs – just say no
Annie nudges me and tries to point with her eyes – I’m a bit slow on the up take and assume she has some sort of nervous tic that in all our years together has only just manifest itself. She perseveres, nodding towards the bookshelf at the end of the room. The bookshelf is completely empty apart from one shelf in the middle, which contains two 1000 word jigsaws and a copy of War and Peace.
We’re in our GP’s surgery waiting for the results of my latest ECG. I pass on the puzzles and Tolstoy in the hope that the wait won’t be that long. Eventually I’m called. This is probably my 5th ECG in as many weeks. Each time my heart behaves impeccably – “a text book scan,” says a nurse, as if it knows it’s on trial. But while my heart is doing its thing within the parameters defined as ‘normal’ my pulse is racing. When this happened a few weeks ago in the presence of Mr S he said, as if to himself, “I wonder why it does that”. Me too.
In hospital my wayward heart was put down to Atrial Fibrillation; the heart muscles quiver (fibrillate) instead of contracting in a regular manner and I was prescribed Amiodarone – the drug of choice in slowing down the heart rate. Now I’m no expert but something strikes me – I’ve been on medication for almost 5 weeks to stabilize my heart rate – so surely it’s not surprising that the ECGs are fine – assuming the drugs are doing their job.
I’ve been keeping a diary of sorts – a place to note down changes or the little things that seem odd or out of place. So I know when I’ve been feeling ill, or having weird sensations – things that I would not normally expect to sense. Although I began to feel better once I stopped taking Tramadol, the nausea came back – not so severe this time, but enough to stop me doing things. For example, I was doing some fettling on my new bike – nothing too strenuous – just a bit of grunting and pushing and pulling (like childbirth but with spanners) – and I felt really sick afterwards. Enough to lie down for a while.
I’ve also been seeing flashing lights in my right eye when lying in bed in the dark. And if I de-focus my eyes I can see an enormous green spot floating around in the same eye. I wonder about the Amiodarone – there is only one cautionary comment printed in the box – avoid exposure to direct sunlight. My curiosity is piqued – why sunlight? So I Google for more information.
Amiodarone is a strange one. Most drugs have a half-life measured in hours; amiodarone has a half-life of 58 days. So it stays in the body for weeks and weeks. And I discover other side effects – some of which I can recognise immediately.
The most common side effect is nausea; others include lung and liver damage, interference with the thyroid, and spots in the eyes – the so-called Halo Vision. And increased sensitivity of the skin to UV light. I realise the whole thing about side-effects is fraught with misinterpretation; it only takes one person to report an effect, while on a particular drug for the drug companies to add it to the list of side effects. Yet it may be entirely coincidental. This can discredit reported side effects – or make us imagine we have them when we don’t. The only way I can be sure, is to stop taking them for a while and see what happens.
I talk all this through with Annie and decide to stop taking the Amiodarone just to see if things improve. We don’t really know what the risk of stopping the drug is – Atrial Fibrillation is the most common form of heart arrhythmia and is associated with blood clots and strokes. Many people are unaware that they have the condition and it’s only under intense monitoring (as in hospital after surgery) that it become apparent. But we don’t know what the chances are of me being troubled by this.
I tell the GP that after 4 days off the drug I feel somewhat better. The bike is looking decidedly tempting. But he’s not happy; “you have to weight the risk of blood clots against the side effects”. Annie asks if I’ll have to take these drugs on a permanent basis. “It’s a possibility”. Now I’m not happy. Are there alternatives – other drugs or procedures that can ameliorate this condition? Well yes there are but he really wants Mr S to take the lead on this – it’s as if he feels out of his depth. We agree that I’ll take the Amiodorone again until I see Mr S next week – unless the nausea returns.
This all seems a long way from the concerns of late June – then all I wanted was to be able to ride my bike again. Now I have no voice and a dodgy heart. We didn’t see this coming.
But it’s not all doom and gloom; I can now sleep on my side. Not all night but enough to give my back a rest (I came across someone who’d had a lobectomy and was still sleeping on his back after 6 months). And although I’m still sore, I’m not in pain.
On the way home, we stop off at Costco. We don’t normally shop here – we have no need for bulk orders of 3’x2’ lasagnes or toilet rolls in packs of 100 – we use it because they have a great photo production facility and can produced large prints at a very reasonable price. Only this time I just need an envelope and as we’re passing Annie thinks it will be quicker to pop in there than go into the City Centre. She comes out with a large box, looking a little sheepish; “it’s the smallest size they have”. 1000 envelopes for £9.99. She puts a gloss on it; “at least we’ll never have to buy envelopes again”. I do a quick calculation – even if I use one a week (very unlikely) – we’ll still have enough to ensure our children won’t have to buy envelopes either. When I get home I update my Will.
August 10th 2010
Je ne regrette rien
“Ah bless”. I have to confess I’ve always found this a rather curious expression. I’m never quite sure what it means exactly. And I’m convinced it’s gender-specific – more likely to be used by a woman than a man. This particular utterance is by L, the speech therapist, as she responds to my explanation that my vocal palsy is a consequence of recent surgery. This first session starts with explanation and paperwork.
The diagnosis: Unilateral vocal cord paralysis; when only one side is paralyzed in the paramedian position or has a very limited movement. It is more common than bilateral involvement. The paralyzed vocal cord does not move to vibrate with the other cord but vibrates abnormally or does not vibrate at all. The individual will run out of air easily. They will be unable to speak clearly or loudly.
The symptoms: hoarseness, breathy voice, inability to speak loudly, limited pitch and loudness variations, voicing that lasts only for a very short time (around 1 second), choking or coughing while eating, possible pneumonia due to food and liquid being aspirated into the lungs (the vocal cords cannot close adequately to protect the airway while swallowing). I acknowledge all of the above except the pneumonia.
And then a health/lifestyle questionnaire: My two cups of coffee a day and (possibly) one spicy meal a week is fine. Eight coffees a day and a curry every night would be a major problem. Apart from lumpy soup my diet should not impede my progress. Lumpy soup? – it needs to be whizzed first to an even consistency – otherwise the liquid separates and disappears first. A better example is cornflakes and milk – you swallow the milk leaving behind cardboard. She explains all this with a 3D cross-sectional model of the head. It turns out there are 32 muscles involved in swallowing. (Note to self; must join pub quiz team when this is all over).
We work down through the questionnaire then come to The question; “do you use your voice for singing?” When I say yes, she looks at me and sits back in her chair, the unspoken “oh dear” clearly written on her face. I try to reassure her – I tell her I’m not expecting miracles, I recognize that if my voice does come back it will sound different, it won’t be the same as the old one; “I just don’t want to give up singing yet”.
I realize why I’m making such a big deal of this – it was so sudden. I went to sleep on the afternoon of the 25th June 2010 with a voice – and when I woke up it had gone. There was no time to prepare – to get used to the idea – to say goodbye. In reading up on speech therapy I come across a woman who lost her voice for about 8 weeks (due to a virus, but same symptoms). She describes her lost self-esteem, her embarrassment at social functions and how she eventually lost her job because she could not speak. I understand the embarrassment; I have party in a few weeks time and I am nervous about it – already strangers give me a peculiar look when they hear me speak. How can you socialize at a party if you can’t talk – especially over loud music and other voices?
I try to think of a parallel; the best I can come up with is a guitar player who wakes up one day to find a hand missing. There’s just no way round that one. A mechanical hand would not work – it’s not just about where on the fret board the fingers are placed – it’s also about how they are placed. A mechanical hand might produce a clean, precise note. But what would it sound like? A change in touch brings light and shade to the sound of the instrument. Likewise with the human voice – the way in which the vocal chords interact with the vocal chamber gives a unique sound and allows interpretation of the song. A pure, precise voice is no guarantee of being a great singer; indeed there are plenty of great singers who have terrible voices. But they can put a song across.
I briefly consider a vocal processor for use on stage (the vocal equivalent of a mechanical hand) – but I’d probably end up like a cross between Steven Hawking and Cher. A megaphone? But I digress.
We start on a series of exercises; humming through a fat straw into a glass of water, resistance exercises for the tongue – pushing it, pulling it, up, down, sideways, in and out. And then the hardest and probably, most important one – forcing the vocal chords to open and close. My vocal chords don’t meet in the middle when they close; there’s a gap as the left one is sulking, refusing to move. Air whistles through the gap when I speak making me sound breathy and hoarse. So the purpose of this exercise is to drag the right vocal chord over to meet the left one and close snugly. How on earth do you do that? A vocal chord is not something you can pick up with your fingers and physically move.
I sit on a chair, grasping the seat firmly with both hands. I take a breath, clench my buttocks and my stomach; I exhale – then suddenly stop. If you’re doing this with me, there is supposed to be a popping sound, as the doors slam shut. No – I can’t hear it either. I have to do 5 repetitions, 3 times a day for the next 6 weeks or so. When I get home I spend most of the evening hiccupping and coughing and wake the next day extremely sore.
But before we end the first session, Annie finally asks the question she’s been desperate to put since we started; “How long?” If I do the exercises everyday and the palsy is temporary, things should come back in about 6-8 weeks. If indeed it is temporary. There’s the thing.
My latest (and probably last) consultation with Mr. S; he thinks that the vocal palsy is probably permanent. Annie is convinced he knows that he cut the nerves rather than bruised them – which is why he referred me to an ENT consultant so quickly.
He also apologies for not phoning with the results of the tumour pathology, but wanted to speak to me in person. Hmm. Although the margins are clear, the location of the tumour – attached to blood vessels and a lymph node – means that they are not now entirely confident that they have removed all the cancerous cells. I’ll be referred to an oncologist for more treatment – radiotherapy or chemotherapy.
I have an x-ray while I’m there. The x-ray shows that the lung collapse has more or less gone. I talk to him about the Amiodarone. He organizes another ECG and if it’s fine I can stop taking the drug. But the ECG, in spite of me asking the nurse to fix the results, shows 150 bpm. Mr. S studies the output in detail and pronounces a change of diagnosis; atrial flutter. The heartbeat is regular but fast. He recommends electro-cardioversion therapy (electric shock to the heart). Annie asks if any of this is due to the surgery. He puts his hands up and says; “yes it is”. Or something like it – I’m still thinking about electro-cardioversion. Isn’t that what Tony Blair had? And he turned out OK… Mr. S forgets to mention Amidarone and I forget to ask. I stop taking it anyway.
I tell Mr. S that despite all these complications I do not regret the decision to have surgery – the alternative was no alternative really. Annie is, I know, finding this hard. She is always positive and supportive but is disappointed by the consultation. She was hoping we could just skip off into the sunset. I reassure her about the radiotherapy/chemotherapy – I always knew in the back of my mind that surgery might not be the end of it. I can deal with cancer; I see it as a boxer’s punch-ball – every so often, if I stand too close, it smacks me in the back. So I turn, pull on my gloves and whack it as hard as I can. Then move very quickly out of the way.
Even jump-starting the heart will be OK if it means the end of the drugs. But I can’t reassure her – at least not convincingly enough – about the voice. She woke up feeling angry about it yesterday. Interesting – I’ve started to refer to it as the voice rather than my voice. As if my voice has gone and has been replaced by this stranger.
Reasons to be cheerful, Number 3.
For supper we dine on potatoes and beans from the garden. The potatoes did not flower but I got impatient waiting, so dug them up anyway – and there they were. I assumed I had planted dwarf beans – that was certainly my intention – so gave them very little in the way of support. But they turned out to be French Beans – and very resourceful ones at that. Not at all put off by my short canes and sticks, they pulled themselves up by their tendrils and leapt into an old rambling rose. A little tricky to harvest but they seem happy enough. These beans are an inspiration to legumes everywhere. In the world of beans, these would be your go-getters – self-made beans – winners of The Apprentice (Legume Version). Chapeau Monsieur Haricot, et bon appétit.
August 20th 2010
Happiness is a Japanese Back Saw
I know it’s going to be one of those days; I have an inkling from the moment Annie wakes. She’s usually a smiley face first thing (I’m a bear until I’ve had a coffee) but this particular morning she’s a little subdued.
Any doubts I have that she might just be a bit fed up vanish when she goes into the bathroom with a crowbar and hammer, closes the door and starts taking the place apart. We’d been meaning to tackle the bathroom for some time – Annie decides it has to be now.
It started with a visit – or rather departure – of her sister Sue and husband Tony enroute for a holiday in France – the one we should have been going on with them. We pour over maps, enthusing about the places to see and stay – but it’s hard being left behind.
But it’s the three phone calls to two hospitals and my GP that really does it. As a result the bathroom needs re-plastering as well as a new suite. Not that she (or the NHS) are entirely responsible for this state of affairs – eldest son Chris comes over with a new toy – an electric drill with special attachment for removing ceramic wall tiles. Goodness knows what sort of tile adhesive they used in the 1970s because half the plasterboard comes away as well.
After a week of becoming reacquainted with my taste buds and an absence of nausea I’m back on the Amiodarone. I wake in the night with a pounding heart – it’s fast and all over the place. There’s a real sense of vibration – like sitting on a washing machine on fast spin as it skitters across the floor. It’s very scary.
Annie phones the surgery for advice. The GP is not happy about my stopping the Amiodarone –“there’s a risk of a stroke”. He offers anti-nausea pills and leaves out a prescription. Annie goes off to the surgery to collect it. About half an hour later a phone call. I dislike answering the phone – my friend Neil said I sound like the Godfather. “We’ve given your wife the wrong prescription”. I try calling her mobile but a poor signal and an offer she clearly can refuse, means she’s back home with yet more Amiodorone. She gamely returns to the surgery, collects the correct prescription and I eventually have anti-sickness pills – some hour and a half later.
I check for side effects; apart from the development of breasts in males and involuntary tremors in the face and legs, it also causes irregular and fast heartbeats…. So – just to be clear; I have irregular and fast heartbeats. I am given Amidarone to bring this under control. But Amidarone causes nausea for which I am prescribed Prochlorperazine – which causes irregular and fast heartbeats. Note to self; donate copy of Big Boys’ Wonder Book of Medicines (Christmas Edition) to local surgery.
We need to get this heart business sorted out so Annie calls MK hospital to check when I can start taking Warfarin. They’ve never heard of me and have no idea what’s she’s talking about. Eventually she gets the info we need. Before I can start, Mr. S has to write to MK with a referral for electro-cardioversion therapy. Then MK has to write to my GP for a prescription for Warfarin. You can probably guess that no such referral has arrived. Annie phones Oxford and discovers that Mr. S has gone on holiday for 2 weeks without writing any letters of referral. The fact that I’ll need to take Warfarin for 6 weeks prior to the treatment means it could easily drift into November before I can have my heart reset. Or any further cancer treatment. Hence the holes in the bathroom wall.
It’s so tough for those on the sidelines – at the risk of repeating myself (ad nauseum) – we both have cancer – I have the tumour, Annie has the consequences.
But there’s always a bright side to these things. The bathroom is a mess and I had planned – when I eventually felt up to it – that I would take out the old panelling covering the soil pipes and build something new – a counter top and basin unit hiding all the pipework and the other plumbing unnecessaries.
I take a look at the damage and the old woodwork is sitting there – beckoning me to have a go. And so I decide to take up the challenge. My weapon of choice is a dōzuki – a Japanese Back Saw. It cuts on the pull stroke, rather than the push stroke, making for straighter and finer cuts than those possible with Western carpentry saws (as the blade is in tension rather than compression when cutting). It has a thin blade, about 12 inches long, and a bamboo handle some 18 inches long. For maximum efficiency the handle is grasped with both hands. This also makes for a rather macho pose, which some consider attractive.
It really does look like something a Samurai carpenter might have used. If you’ve ever wondered why Japanese furniture sits so low to the ground it’s because, in ancient times, bands of marauding Samurai chippies armed with these fearsome tools would wander the countryside terrorising the local people with their cry; “Give us money or we’ll cut your legs off – (your furniture legs that is)”.
My particular dōzuki was a present from Annie’s son Chris – he felt I might be in need of one sometime. And like Excalibur – it does not disappoint in my hour of need. It is incredibly sharp and I spend about an hour making sawdust before fatigue sets in. At the end of this little adventure I am very, very happy. So too is Annie. A glimpse of normality returning.
In a few days I have a blank canvas – the bath, loo, washbasin and rusty radiator are all gone. There is a new framework to support the counter top and basin, and the room is all ready for plastering. One of the advantages of Annie’s years of teaching is a ready supply of plasterers, electricians and plumbers. A phone call and one of Annie’s ex-lads is stroking his chin and making notes; he’ll call later with a quote for the plastering. And he will. She still has the teachers’ look and teachers’ voice.
I am exhausted. I am sore all down my left side. But it’s a satisfying soreness – the sort that comes from hard physical work, rather than the phoney soreness from surgery. I really didn’t expect to be able to do any of this yet. I have a couple of weeks off before I start again – the plastering and painting will need to be done first. And painting is a job that Annie always seems to claim. Chris offers to help fitting the bathroom suite, and I will eventually christen the bath with a soak in Radox. I pack up my tools and give the blade of the dōzuki a fond wipe down with an oily rag and hang it in my garage until the next time.
Reasons to be cheerful No. 17a.
I’m servicing Chris’ bike and itching to ride it. My old mountain bike is leaning nearby so I grab it and ride off up the road. Annie has heard me go and as I come back she’s there with her camera to record the event for posterity. Not far perhaps – but my heart is pounding from riding up (as in incline) the road. I fetch my new racing bike from my study and spin off up the road on that. I had September pencilled in as my target for getting back on the bike – so I’m a good few weeks early. Now that really is something to write home about.
August 28th 2010
Hi ho, hi ho
“I see you’ve still got the sore throat”. This from the plasterer – he’s coming in as I’m going out. I don’t have the heart to tell him.
I’m off to work today. Just for the day, mind. The annual leave year finishes at the end of September and I have three weeks to use (or lose) – so a day to sort out emails, to find out who’s been sitting in my chair and to begin the slow process of getting back into the swing of things. It’s a pleasant distraction from listening to the plasterer. Or rather, his radio.
I’m pleased to go in – and people are pleased to see me. Work is so much more than a series of processes and systems. My big concern is speaking to people – what will they think? Will they be able to hear me? We manage to communicate, but it’s tiring. By lunch-time any voice I have is reduced to a whisper. People simply cannot hear me in the canteen, so I give up.
Everyone I meet tells me I’m looking well. We pop in to B&Q in the week and within the space of about 10 minutes bump into three sets of friends – all say how well I look. It’s lucky we don’t have X-ray vision.
I say “pop in to B&Q”. Nobody ‘pops’ into B&Q. Not in MK anyway. It’s vast. People have been known to lay in supply dumps of food and essentials in order to make the trek from Entrance to Exit. We find some poor gibbering soul in the plumbing section, his head darting side to side as he tries, unsuccessfully, to decide between push-fit and compression fittings; from the length of his hair and beard I’d guess he’d been there a month. It’s a tough call – I can’t decide either, so buy a set of each.
While I’m at work pushing back the frontiers of knowledge, Annie has set herself the target of phoning the hospitals in order to try and kick start the next stage(s) of my treatment. She has a list; cardio, oncology and vocal chords. Needless to say, no joy.
I’m making some progress on the voice front – I can now sing a scale – or rather – I can make a series of noises comprising 8 ascending and descending tones. Each one is in the right place relative to its neighbour. It’s in a low register though – so low that the only ones capable of hearing are likely to be our cetacean cousins out in the North Atlantic.
I try singing a song – no good. I have to leave out some of the words in order to breathe. Or I could stop at the end of each phrase I suppose, take a breath and then carry on. Not a style that’s likely to catch on.
I come home from work early afternoon. I feel terrible. Work is not strenuous by any strength of the imagination – it’s not like plastering a room or taking out a bathroom. The only heavy lifting involves a coffee cup. But somehow, it takes it out of me and three lots of anti-nausea pills do not work. I admit defeat and retreat to bed. Next morning I’m fine. So there it is, that proves it – work is bad for your health. I have three weeks to recoup before the coffee cup needs lifting again.
the prodigal tumour 