Tagged cancer

Bad blood

blood

 

On this day last year I got a call.

It was my GP (I’ve only met him once.)

‘The results of your blood test are here. We think there’s been a mix-up with the samples. You can’t possibly be so severely anaemic. Can you come in again to be re-tested?’

I had been ill for over a month. The glands in my neck had swollen up; there were solid lumps on either side. I had pains in my back and ribs, recurrent fevers, a sore throat. I was tired like I’d never been before. My entire body ached; I could barely move. But every time I rang the doctor’s surgery, the receptionist told me the next available appointment was in two weeks’ time. So I went to a walk-in weekend clinic and waited for several hours in a swarm of hysterical toddlers.

The first time the doctor was friendly, in an all-girls-together kind of way.

‘Everyone worries about swollen glands, like it might be – you know – cancer – or something,’ she smiled, and prescribed me a course of antibiotics.

‘You’ll be fine in no time at all,’ she said. ‘Look at you! Glowing with health!’

‘It’s make-up,’ I replied.

‘You have to tell me which products you use!’

She was wrong. I didn’t make a miraculous recovery. And the surgery were still ‘booking for two weeks time, sorry,’ so I went back to the walk-in clinic the following weekend. My glands were visibly swollen, protruding from my neck. But it was January, and the clinic was overrun with rugby players who had succeeded in injuring themselves at the first session of the new year, so I was told that all the doctors had more serious cases to deal with. After several hours’ wait I was seen by a nurse, who barely glanced at me, and prescribed another course of antibiotics.

Eventually I achieved the hitherto impossible; I secured an actual appointment at my local surgery. Not with my GP – I wasn’t granted an audience with the man himself – but a student doctor who was standing in for someone else. She examined me briefly and said that ‘swollen glands can take a while to go down, sometimes.’ It had been over three weeks by this point. The following week I came back and was seen by another doctor – another doctor who didn’t work there, but was standing in for someone else.

By this time I was scared.

‘I’ve never felt like this before,’ I remember saying to my dad. I was shocked. I had been ill before, had the flu, like everyone else. But now I was too weak to hang my socks on the radiator.

So I asked the doctor if I could have a blood test. I’d been googling symptoms and was convinced I had glandular fever.

Fast-forward three days later, and I’ve just been told that the blood test has to be redone. I’m about to leave the house when I get another call – another doctor from the surgery. She has a kind voice.

‘The test shows a negative result for glandular fever,’ she says.

I breathe out, a sigh of relief. After all, glandular fever is the worst affliction imaginable.

‘But I think you need to go to A&E straightaway,’ she says, hurriedly. ‘Get another test. Just to check that it’s, you know, definitely not glandular fever.’

I find my keys, bag, shut the front door, walk up the street, with an odd ringing sensation in one ear. I see a family friend walking on the other side of the road, walking in her long grey winter coat, her dour expression. She doesn’t see me. Usually I’d stop to say hello. But my ear is ringing and ringing and I’m struggling to breathe. I take the bus to my local hospital.

I don’t have to wait long to be seen. The kind-voiced doctor has already called up A&E. Thank God; I’ll be out in a couple of hours, at most.

I don’t know it then, but it’s going to be a while before I step outside a hospital ward.

Weapons of mass destruction

Nowadays they say they can kill all the cancer cells with chemo.

Then there are drugs for all the side-effects.

They can give you anti-sickness medication, in your mouth or your veins, plunging you into a three-day hangover; they can give you a different kind which demolishes your kidneys, or they can give you ones which sound like Dom Perignon, but they can’t do much about the odd feelings that remain.

When the nurse gave me cyclosine she said it might make me feel a bit light-headed. She didn’t tell me it would leave me pawing the bed in some kind of parody of Islamic prayer, or embarking on an orgiastic display of self-flagellation and paranoia.

I’d asked her for some anti-nausea medication, without anything in particular in mind.

‘Intravenous you want?’

(‘Clubcard?’ ‘Cashback?’ she might have said, just as casually.)

I hesitated. Was this the sort of decision that was allowed to be in my hands?

‘Sure.’

She asked if I’d tried cyclosine before. Not that I knew of, but then every morning at 6am they just used to give me a shot through the veins with a chirpy ‘anti-sickness!’ along with a staccato ‘antibiotics!’ and finally ‘time for the blood!’ I wasn’t really in a position to name names.

Suddenly my heart was racing; I was pounding on my mattress with the flats of both palms in some inexplicable liturgical dance. I started crying for the first time, properly, since the diagnosis, crying out that I used to be a good girl, I was a good girl before the leukaemia.

I started gabbling, apologising to the nurse for my parents – I’d worked hard at school, I was always good before – I was really sorry, I told her, to the nurses on the ward, the NHS, the hospital, I was very sorry, for the inconvenience, and not only that, I was sorry, I promised her – I’d always been good before this.

Then the hallucinations came. The ground was breathing, rising up and swelling. And the nightmares. (I was raped and assaulted in one, eaten alive by crocodiles in another).

You’d think it’s when they’re detonated that the weapons are at their deadliest. Actually it’s not. It’s when the prospect of them is looming, the anticipation building. The hovering just out of sight, the unknown danger which lies ahead.

And then the fear, in my case, that the weapons won’t be deployed fast enough.

So it happened with the L-pegylated asparaginase, a chemo drug that was meant to be injected in my back. Saddam Hussein, we were once told, could release weapons of mass destruction within 45 minutes. Asparaginase, like an explosive ticking time bomb, expires within half an hour. The nurse on duty didn’t realise until it was too late. The chemical was wasted. £1300 of NHS money down the drain.

The next day the lab didn’t get the product ready in time. My treatment was delayed by two days, with lots of um-ing and ah-ing and finger-pointing over the true culprit, and the doctor blaming the nurse for not reading the label*. Followed by an about-turn where we were told the 30 minute-window wasn’t in fact correct – or maybe it was – and all the hallmarks of a sexed-up dossier.

I was confused. I still am; I don’t know exactly what went on. 2 days doesn’t sound like a lot, but it feels far too long when the enemy is in sight.
IMG01040-20130313-1821

 

*I would like to add that the standard of care I have received at this hospital has generally been of a very high standard, and I I have been overwhelmed by the kindness, humanity and professionalism of the staff here, especially given the great challenges they face.

More on that in another entry though. For now, I’m just waiting on that package from the Middletons’ PR Office – where could it have got to?

Scratching on the blank slate

sepia

‘You know what you should do,’ the consultant haematologist smiled, ‘you should write a Blog.’ He looked very proud.

Of course I nodded gamely. No point arguing. The sun was shining, the registrars and nurses poised with their clipboards on the daily round, everyone beaming in my direction. The cheeriest chemo patient on the ward. (Or so I’ve been told. Unless they tell everyone that).

‘You could talk about your experiences with the treatment – you’d have so much to say.’ The registrars and nurses seemed to nod as one.

‘Great – I’ll do it,’ I probably said. I can’t remember. This was a couple of weeks ago. All I know is that I hadn’t the least intention of following his advice.

I couldn’t think of a worse idea.

I knew exactly what he was after – the confessional tone, the grimly ‘gritty’ subheadings. Losing my hair, losing my strength, my fertility – all the delicious side-effects which accompany a cocktail of drugs pumped through your veins.

Basically, the kind of self-aggrandising narrative that friends and relatives would dutifully read and comment and re-tweet, out of a dogged sympathy for my Resolute Bravery in the Face of Adversity.

Writing about leukaemia just seems like a cheap shot. Inevitably self-pitying, introspective – and somehow insufficient. Is a serious disease enough to turn you into a scintillating object of interest? Are you blog-worthy just because your bone marrow is misbehaving and your chromosomes are really messed up?

On top of that, my reservation with blogs has always been that it’s too late now and the only ones people actually read were all sparked off around a mythical golden age of the blogosphere explosion circa 2007.

On the other hand though, blog success is probably worse than failure. I’ve already received one or two saccharine messages praising my Inner Strength – and suddenly an email addressed ‘Dear Beautiful Hannah’ from a usually austere family friend got me a little bit scared. What next, a card from the Duchess of Cambridge telling me I’m an inspiration? (A teddy from Pippa?*)

But I’m getting ahead of myself. This is all specious, because here I am with my first blog entry.  After splotting out all these doubts and misgivings, why am I still writing?

*This bit is disingenuous. Nothing would make me happier.