From April 2013

The things people say

Cancer, when it’s curable, is like North Korea. At times the prospect of imminent danger slips from your mind, and it fades into a dormant kind of fear. It is terrifying. But you don’t think it’s going to kill you. It becomes a nebulous constant in the background. At times you can even laugh about it.

Then suddenly it’s threatening you with missiles.

Or false alarms. You never know.

There are certain anecdotes you don’t want to hear first thing in the morning from a burly man equipped with a full set of needles, when you’re receiving blood transfusions and a nice batch of platelets before breakfast.

‘Girl in this room,’ the nurse told me. ‘10 years ago. Serbian. They were going to deport her. There were lots of delays. Then they tried a stem cell. The treatment wasn’t working.’

I didn’t know what to say.

‘In this bed here,’ he continued with a smile. ‘I remember it like yesterday. Such a nice girl.’

He stopped for a moment, cradling the packet of blood in both hands, then began again:

‘She was given three months to live.’

I felt cold.

He paused for effect.

‘She recently finished her degree. She’s a practising lawyer now.’ He was digging out his phone. I saw lots of hair and smiling teeth. ‘There she is with her fiancé.’

Not everyone, though, can manage to confront mortality and then raise a smile within the space of a few moments. I know that most people have the best of intentions, but some of the cack-handed questions and comments I’ve come across are stultifying. The ambulance driver who asked me brightly, with a big grin, ‘What are you going into hospital for?’ I had been diagnosed with leukaemia an hour earlier. I was in tears at the time. Or the message I received from a former university friend, some weeks ago, after posting several links to this blog on my personal page (as well as an accompanying explanation): ‘Hi Hannah, are you not well?’

Then there’s irony. Often best considered the privilege of the patient. I remember the smug-looking medical student who came in to examine me, bent my elbows at lots of awkward angles and asked too many questions, until a certain picture of a virtuous healthy lifestyle began to emerge. Never eaten meat, light drinker, keen swimmer and runner, tried a handful of cigarettes at most.

He threw his arms up in sarcastic lamentation. ‘Why, Hannah, why?’

On the other hand, I don’t mind being told how inordinately brave I am. It does scare me a little, though. It all seems very ominous. I feel like asking, do you know something that I don’t? I thought the prognosis was encouraging.

The same goes for all the tower of inspiration rhetoric. I don’t agree, but I lap it up anyway. Or people praying for me.

But when there’s any doubt over what to say, an anonymous gift never goes amiss. I’m still trying to establish who sent me this. Thank you to the mystery sender:

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Well this is awkward…

‘“I can’t explain myself, I’m afraid, sir,” said Alice, “because I’m not myself, you see.”

“I don’t see,” said the Caterpillar.”’

– Lewis Carroll, Alice in Wonderland

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Leukaemia, cancer; there are definitely many downsides.

The chemo makes you feel pretty grim. You’ve got a steady supply of poison being pumped through your veins. It kills off the malignant cells – or so you hope – and obliterates a good many healthy ones in its wake.

But if we leave aside all the physiological drama for a moment, all the aches and pains, the crippling nausea and the weakness, there’s one thing I really dread. To be honest, given the choice, I’d prefer an injection (a little subcutaneous one though, nothing overly invasive).

I’m referring to the moment of revelation. The bit where you have to tell someone for the first time.

It could be a close friend, it could be an old colleague. It could be the alumnae office from university, ringing up to see what you’re doing with your life. It’s always fraught with tension.

You do everything in your power to avoid the loaded silence. First you drop the bombshell, then you sense the utter panic on the other end of the phone; their brain goes into overdrive, ticking away furiously searching for the right words. You start talking and talking, you keep talking; you don’t let them get a word in edgeways. You’re trying to spare them the unease. It becomes a matter of boosting morale. You find yourself gushing about impressive remission statistics with all the aplomb of a failed head teacher boasting about exam grades.

When the numbers look good it gives you something to hide behind. It’s just a question of finding the right numbers. It’s not easy when there aren’t many to go on. There are only 28 recorded cases of my cytogenetic anomaly in the UK. Sixteen of them, I was told in the vaguest terms, responded to treatment. I don’t know what happened to the other 12.

But nothing stands in my way. I’ll do anything to avoid the shocked pause. On more than one occasion, I’ve found myself spinning out stories and statistics, ending the conversation with the conclusion that, really, I’m incredibly fortunate – in fact, more than that, I’m actually ingenious; I’ve somehow managed to contract the best, most treatable disease in existence, in all the ideal circumstances, surrounded by the greatest support and finest medical facilities possible. And it’s perfect timing as well. (‘Imagine if I’d been born a few decades earlier! I wouldn’t stand a chance!’)

But if it’s hard for me, it must be much more difficult for the other person to find the right thing to say. And there is no right thing to say. There are plenty of wrong things. I have some stunning examples.

More on that next time.

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Out on good behaviour

So eventually the white blood cells did spring up to Alice-in-the-rabbit-hole proportions. 19.1 on Monday thanks to the injections (the normal human range is between 3 and 12.)

I felt like a prisoner escaping the hospital. I probably looked a bit shifty walking out of the room for the first time in six weeks without a surgical mask. I think I was half-expecting one of the nurses to run after me and stop me on my way.

Anyway, I’m only really out on parole – yesterday, after getting my blood taken and a dressing changed, I spent the entire day in hospital just waiting for this little lot to come up from the pharmacy:

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..and tomorrow I’m booked in for a bone marrow biopsy at the out-patients’ clinic, which feels a bit like having a medieval instrument drilled through your back, but should give some idea of what my cells have been up to.

I just need to remember to have all these before I go:

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