It’s going to be a tough day. In the morning to Oxford for the verdict on the scan; in the afternoon it’s Mr ENT in MK for a verdict on the voice. I ask Annie how she’s feeling and how do we deal with Oxford; in particular – if it’s bad news do we cancel Mr ENT? She shakes her head; “no – we’ll just have to be brave”. She reminds me about the last time we were in this situation – April 2010. Back then a cancer care nurse accompanied the consultant when he came to deliver the news that the ‘thing’ in my lung was a tumour. She fixes me with one of her stoical smiles and a not very convincing impression of Private Fraser (from Dad’s Army); “if the nurse comes in we’re doomed.”
I go over the letter from the oncologist once again; “tubular structure….” What on earth can that mean? Apart from tube-shaped. A number of possibilities spring to mind, the first being that they’ve left something in there from surgery. My mind rambles for a while – whimsical nonsense merely a diversion from considering the more sinister alternative. I’m clutching at straws. If only it was a straw….
Then I look again. I’ve missed a word; enhancing. It actually reads; “tubular enhancing structure….” Odd choice of word. Enhance; (verb) to improve. So this thing is improving? Does he mean ‘enlarging’? It wasn’t apparent on the previous scan 6 months ago, so it’s put in an appearance since then. Perhaps it has enhanced its chances of survival by growing.
I’ve been here so many times before. There is no amount of speculation or preparation that can make this moment any easier. I default to the old standby; hope for the best and prepare for the worst. I try to plan a trip to France in September to see Annie’s brother, but make sure my will is up to date. We’re on a big dipper – it’s flying up to the top of its run. There are two possibilities when we reach to the top. A sudden violent plunge into the depths or a gentle glide back down to normality.
There are times, particularly when writing this blog, that it all seems a bit unreal – as if it’s happening to someone else and I’m merely an observer just looking on. (If only …) Physical intervention is a dramatic reminder; the PET scan gets off to a slow start. It takes two radiographers to find a vein for the injection of the radio-active sugar solution; “his veins are mobile”. Is it any wonder? – Perhaps they’ve had enough. In their haste and frustration, they dispense with the usual “sharp scratch” and after abandoning attempts above and below the elbow, settle on a small vein on the back of my hand, probably frozen in fear like a rabbit in headlights. Then the slow 30-minute transit through the doughnut as solution and electrons meet to create a unique artwork. This is happening to me all right.
When I see friends they comment that I look and sound normal. Which I do, I guess. Physically, I feel better than I have done in ages. With the motor switched off, I’m riding my bike in a higher gear than before. Even though it’s heavier than the old one, it seems to fly along. With the motor switched on, I zoom up the hills. I pour scorn on their puny gradients. The wind holds no fear. And my recovery time is a fraction of what it used to be. My office is on the third floor; on the days I cycle to work I take the lift. But when I take the car, I use the stairs. A few months ago, having made the ascent, I would flop breathless into my chair and it would be minutes before I could speak. Now I plonk my bag on my desk and wander off to get a coffee and chat to colleagues. I’m still out of breath and my heart is pounding from the effort, but I’m not suffering. I wonder, now that I’m back down to 300 feet above sea-level, if a couple of weeks huffing and puffing at high altitude (or higher than I’m used to) has had a positive effect. In the interests of science I really ought to go back and test it again. On days like this, it seems hard to believe that there might be something sinister growing inside.
Although we carry on as normal – or our best impression of ‘normal’ – there is a big cloud hanging over us, which infects everything we do. We’re not always aware of it. I am aware though, just what a drain this can be; things that should be easy – things to look forward to – require more effort. There are always loins to be girded (whatever that actually means). I recall at various stages over the past six years, particularly when bad news was either expected or confirmed, that I would question even the most mundane with – is it worth it? My question in the first paragraph above about cancelling Mr ENT clearly had an unspoken ‘is it worth?’ attached. This is not unusual. Alan Bennett, when first diagnosed with bowel cancer, wondered if it was worth carrying on recycling his rubbish.¹
Positive thinking, though essential, is hard work. Sometimes it’s difficult to summon up the energy. Like now, for example. In the parlance of the many Blues musicians who frequent the Milton Keynes Delta, I seem to have lost my Mojo. This is a temporary affliction because, like an often absent but ever-faithful hound, it always returns home. In hindsight this is probably not a good analogy. Imagine having a dog called Mojo. Better still – imagine being alone in a wood with just a dangling lead – and trying to explain to passing strangers, that you’ve lost your Mojo. It could be worse – I once had a neighbour who had a cat named Whisky (why do people do this?). He used to stand outside his front door late at night calling out for Whisky.
And so we come to it. It’s been 6 weeks since we last sat in the oncologist’s office. Six weeks of fears and tears – and, thinking back to our holiday in America – fun and wonder.
We spend around half an hour in the waiting area and then we’re called to the consulting room. The tension is palpable; the door is open and people are wandering up and down the corridor, some taking a quick look in our direction. There’s a nurse with a file under her arm who seems to pay us a lot of attention. We look at each – is she waiting to see us? Is she the Angel of Death? The clock ticks on. It’s been 30 minutes now. Another nurse looks in at the empty chair by the oncologist’s desk and ‘tuts’. We see him outside in the corridor. Wherever he’s going it’s not in our direction. Later, there are voices outside the room and tantalising shadows on the floor. And then it’s quiet again. Eventually, after an hour of waiting and with Annie about to explode, a young lad, looking remarkably like Tintin walks in. He explains he’s working with the oncologist. No nurse then. Hmm.
“How are you today?” I explain that if it weren’t for the fact that I was sitting here, I’d be hunky dory. He’s puzzled and frowns. “I’m here because there’s something in my lung that wasn’t there last time you looked. You’re going to tell me what it is.” It seems we may have a bit of a problem understanding each other because he thinks for a moment before turning to look at the computer screen. “I’m not excited by your scan”. Pardon? “We’re supposed to get excited about cancer. It’s not cancer so I’m not excited”. It’s not cancer and he’s not excited. But I’m excited. Annie’s excited. We want to jump up and down.
The consensus is that it’s a remnant from surgery. Like a fossilized ancestor that never made it up the evolutionary ladder, there’s a dormant blood vessel in the lung – a reminder of a past catastrophic event; “It’s a clotted stump – it doesn’t appear to be going anywhere”. But the oncology team have never seen anything like it before, so they’ll seek advice from the cardio-thoracic surgeon who carried out my operation. “We need to find out if something like this is to be expected – and what to do about it.”
So this is all good news. But I sense that it’s not over yet. There is a ‘but’ somewhere hanging around. My suspicion is confirmed when he says “we don’t like PET scans.” I have to ask for clarification – we haven’t completely resolved our communication problem. “They’re a nuisance – too sensitive – they tend to throw up things we weren’t looking for.” Annie and I look at each other. He swings the monitor round and scrolls up and down my torso. “You have a cracked rib”. Sure enough – there it is. It’s on the right-hand side. Two months ago I reported a pain in this area to my GP (see A right pain May 25th 2012). I’m relieved – I knew there was something wrong.
“And” – he scrolls up and down my torso again – “there’s a hot spot in your belly.” I look at the screen and there’s a small blob – a red coloured island in a sea of blue-green. My heart sinks; I try the least worst option. “Could it be an ulcer?” “No, it’s in your belly – near your ribs”. He points to my lower chest. He means abdomen – I take ‘belly’ to mean stomach. So it can’t be stomach cancer either. What is it – and what do we do about it? He doesn’t know. “I need to consult the Boss.” He leaves us alone while he goes out to talk to the oncologist.
Annie smiles; “we’re not out of the woods yet”. I agree; “but we’re in a clearing – we need to be above the tree-line”. I’d love to be above the tree-line right now.
Tintin comes back and we arrange to have another scan in 3 months time. “We don’t know what it is, but we feel obliged to check it out”. It won’t be a PET scan; “if it’s big enough to worry about, it’ll show up on a CT scan”. I think, given his unique style of communication where what he says is not exactly what he means, that this is meant to be reassuring – if it’s not on the CT scan then it’s nothing to worry about. This is not strictly true – but as he’s not excited about it, perhaps I should relax.
And that’s it. No cancer nurse, no impending doom. The big dipper is not plunging violently downwards – although not quite the gentle glide we hoped for. As we walk back to the car Annie voices her only concern (apart from the rain); “there’s always one little question mark – we never seem to leave here with everything sorted out.” At the back of her mind is a ‘random’ tumour. One that is not located in any particular organ, but just turns up somewhere in the body. She knows that such things exist. “But I’m not going to worry about it until October. It’s blue skies from now on.” Her optimism is undampened – unlike her hair.
We head up the A34 to our appointment with Mr ENT. It’s all a bit of an anticlimax after Oxford. He numbs the back of my throat and inserts the camera. I make the requisite ‘EEE” sounds. He calls a colleague to look at the video screen; “posterior chink”. The gap has not reduced in size – it’s still causing some inconsistency in my voice. But he’s satisfied with my progress. He thinks for a few moments – he’s clearly considering the possibility of another injection. Professional pride is at work – it’ll never be perfect but it could be a little better. “There’s no guarantee and it might just be a waste of time”. I suggest that I carry on with the speech therapy and perhaps see him again in 6 months. We leave it at that. I’m surprised and pleased Mr ENT has left the door open for another try – even if it is just a chink
Annie sniggers on the way out; “a posterior chink, a hot spot and a clotted stump. Bet you’ll write a blog about that.”
Mesmerising writing as ever and a deep privilege to be able to share your journey, I learn more and more each time. Looking forward so much to being part of your backing band again in a couple of weeks- now that really is a milestone too!
I have been campaigning for a long time for better training both in Med Schools and in the medical work-place (hospitals and the like) in patient-communication, both in method of speaking and body language. The scenario at Oxford that you have described with such humour and pathos would have made a wonderful training video for medics generally – regardless of how long they have been in practice. In fact, many of your experiences have been so harrowing, that had it not been for your joint sense of humour (black and otherwise! ), lesser souls could have been forgiven if they had given up. But a love of life and determination, and with the incredible strength of Annie along side, you may have sagged but you have never surrendered. You are just two of the most remarkable people I have ever had the privilege of getting to know.