I hand in the monitor around 8.30 on Monday morning as requested. The recipient is not best pleased. She leans across a half-eaten bacon sandwich; “we’re short-staffed…” which means no one is available to download the data. I explain I have a cardiology outpatients’ clinic in a few days time – and more importantly – the results need to go to Oxford. She shrugs.
Getting the results to Oxford has become important because at about 4.00am yesterday my heart rate shot up (enough to wake me) then slowed before dispensing with any semblance of a normal rhythm. It’s been 4 weeks since the last occurrence, but the first to happen while I’m wired to a monitor.
In the dark it’s all too easy to get carried away thinking about the implications. One minute I’m convinced that the ablation really has not worked (with all that this entails as far as the voice is concerned), the next it’s simply a blip in the life of an otherwise normally functioning heart. Around 6.00am I hear Annie stir and she has a listen; “It’s all over the place”. It’s not until late afternoon, after jumping up and down and shouting (rasping) at the television as Mark Cavendish wins the final stage of the Tour de France, that I notice it has settled back into a normal rhythm.
As I drive out of the hospital car park, I have little confidence that the results of the monitoring will ever see the light of day (I had a 24-hour monitor in January which was never heard of again). But this time the Fate Fairies lend a hand because when I arrive home from work there’s a letter from Oxford. It’s a copy of a request from the JR asking for the output from the monitor. At least there will be an audit trail this time.
I dash into the kitchen waving the letter like Neville Chamberlain returning from Munich. Annie’s standing over the cooker, all Marigolds and sweat. We’ve had a Mexican standoff about cleaning the hob – she backed down first. She looks up; “Copernicus just called – you’re not the centre of the Universe.” I acknowledge her wit and admire her handiwork. It really is the cleanest hob I’ve ever seen. And I’ve seen some clean hobs in my time.
There’s another letter that I’ve overlooked in all the excitement. It’s from MK hospital calling me in for an ultrasound. I’ve had a pain in the right side of my groin for the past few weeks. I put it down to the ablation, riding my bike, driving the car, but my GP is not so sure. Given the periodic passing of blood (Warfarin?) he thinks it may be an infection or cyst somewhere in what he coyly refers to as my ‘waterworks’. While we’re dealing in euphemisms I wonder if he’s just referring to my internal plumbing or does he include my external fixtures and fittings as well. He has a good prod about – judging by his reaction to my reaction, he means everything; “I don’t think you should worry, but with your history we shouldn’t take any chances.” He refers me to a Urologist. Hence the ultrasound.
I risk exceeding my broadband download limit as I Google for information. Putting ‘waterworks’ into a search engine is not a good idea unless you have a real interest in Applied Hydrology. I eventually settle for ‘groin pain+men’. Why do I do it? I should know better after my first cancer diagnosis when the cancer nurse cautioned me against visiting such websites; “you’ll just scare yourself”.
I’m a little surprised at my reaction to all this. I am, I guess, embarrassed at the thought of having my bits prodded and poked about. Having been treated for bowel cancer and worn an ileostomy bag for 18 months – which often leaked – in public as well as in private – I thought there were no more indignities left. But I am wrong. And from what I read on the internet, I am not alone. It seems to be a male thing. I come across an article entitled ‘Men have the balls, women have the brains’. It would appear that women are much better at seeing a doctor about embarrassing symptoms than men are. Perhaps the phrase ‘The British’ – as in ‘The British would rather die than be embarrassed’ – should be replaced by ‘Men’.
At the cardiology outpatients’ clinic a few days later we see Heart Doctor No.1, the consultant I saw when I was admitted in February (see entry; St Valentines Day February 2011). I wasn’t expecting to see him; others have dealt with my case since then. We get off to a bad start; he doesn’t recall seeing me, he isn’t aware that I’ve had the ablation and then becomes irritated by the fact that I’ve seen three other cardiologists; “… they really shouldn’t do that…” I feel like some sort of promiscuous medical groupie.
Just to recap; I saw him when admitted with palpitations in early February; I saw Heart Doctor No.2 when re-admitted a week later, who referred me to Oxford for the ablation; I saw Heart Doctor No.3 in mid April in an outpatients clinic, who cancelled the ablation; I saw Heart Doctor No.4 when admitted again at the end of April – who reinstated the ablation referral.
The only useful thing we take from the clinic is the result of the 7-day heart monitor, which thankfully has been downloaded in time. What I experienced last Sunday turned out to be Atrial Fibrillation – 4 episodes over the 12 or so hours that I was aware things were not as they should be.
This is mixed news; he thinks the ablation has ‘cured’ the atrial flutter, but ‘caused’ the fibrillation. This is not unknown. Fibrillation increases the risk of a stroke – as I am in the low risk category, I can stop warfarin but I will need to take aspirin and beta-blockers on a permanent basis. So – my hopes for a drug-free future have been thwarted.
HD No.1 is not interested in talking about the voice procedure; he just wants to talk about my drug regime. He says I can stop the warfarin 8 weeks after the ablation. The ablation was on 6th June so this should be around 6th August. He plumps for the 20th August. Annie and I look at each other, the ‘but surelys’ we are each thinking, getting lost as he moves on. I ask if I can lower the dose of the beta-blockers. He hums and haws and eventually utters something that sounds like ‘probably’.
It doesn’t really get much better; I explain that I’m not particularly happy about being stuck on drugs for the rest of my life. “A lot of my patients say that”. He is not convinced that ablation is a cure for fibrillation; “perhaps in another 5 to 10 years.” So that’s that. Suddenly the audience comes to an end. As we leave I have no idea what happens next or who is looking after my case. Heart Doctor Nos.1-4? Oxford? My GP? Annie? The Fate Fairies? He’s not the only one who’s irritated.
It takes me a few days to work out why. At first I give him the benefit of the doubt and simply put it down to him not telling me what I wanted to hear – that the ablation was working and everything was hunky dory. But eventually it dawns on me that what’s irritating me most is his manner. He delivered some good news (the flutter seems to have been cured) and some not so good news (you have atrial fibrillation). But then so did the Thoracic consultant two weeks ago – ‘no sign of cancer but you have fibrosis’. Yet we did not leave his consulting room with anything other than a sense of ‘we can deal with this’. And that’s because his whole approach was positive – a sort of ‘yes it’s going to be tough but there are things you can do …’ approach.
Heart Doctor No.1’s manner was just plain negative. Gloomy. There should be a sign on his consulting room door which says Abandon hope all ye who enter here. OK, not as bad as that. But we’re left scraping the barrel trying to put a positive spin on things. Annie and I have only got through the past 5 years or so by being positive.
Perhaps he is a great diagnostician – but his people skills could do with some work. And why is this important? Because it’s all about confidence. Sometimes I think doctors are just guessing (or perhaps I’ve just seen too many episodes of Holby City) – but if they guess with an air of confidence, then I’ll go along with it. It’s all any of us can do.
reasons to be cheerful No.572
Early last year I took part in a harmonica workshop – I had ambitions of playing the blues. It was hard. So hard that I gave up. What I didn’t realise at the time was that I had a tumour sitting in my left lung blocking my airways. But I did learn one thing – the harmonica player’s party trick – how to make the sound of a train.
After surgery Caroline, a colleague from work, gave me an inspiratory muscle trainer – a ‘blow/suck’ device for training the lung muscles and thereby improving breathing. Having put off using it for the best part of a year I eventually take it out of its packaging and read the manual. I realise that a harmonica also works like an inspiratory muscle trainer. So I get out my harp, put on my dirty red bandanna, settle on the front porch and make like a train. It sounds more like Stephenson’s Rocket than the Flying Scotsman, but it’s still a train nonetheless.