Tagged chemo

The Sunny Side

 

alrightdarling

I didn’t write anything for a long time this year because I was too ill. There have been a lot of ‘hiccups’.

Except I don’t think anyone’s ever had to take morphine or undergo serious surgery for their ‘hiccups’. It’s the kind of term a well-meaning medical professional would use to describe the past year since my transplant. No sign of relapse so far, no organ failure. Still alive. Never once been in intensive care. For a transplant patient I’m ‘lucky’.

I don’t feel it, most of the time. But I’ve seen what ‘unlucky’ looks like.

bloodtransfusion

The first time I met Sunny was in the transfusions suite at my hospital. It was a few months after my transplant. I still needed regular top-ups of red blood and platelets to keep me going.

In walked Sunny asking for a blood test; big brassy blonde wig, black leather jacket, jeans. As I sat there with my bag of platelets ticking away, we got chatting. I recognised her face. While I was in isolation I used to see her every day, from my window on the ward. Sitting on a bench in the sunshine with her chemo drip, cannula in one hand, cigarette in the other, surrounded by friends and relatives, usually at least a dozen of them. She came from a big Catholic family; I found out later. I remember her now from that time – a bald girl in a red polka-dot dress, chain-smoking, laughing – looking pretty carefree, for someone hooked up to a bag of poison.

I’d assumed she was around my age, in her twenties. But she told me she was 33. She had two teenage daughters. She’d been diagnosed with ALL, like me. We had the same consultant too – she called him Dr Horror, she told me with a laugh.

She had just had her second bone marrow transplant – she’d only been discharged from the ward a couple of days earlier. I was incredulous. After one transplant I could barely string a sentence together, and still months later I felt barely alive. But here she was after two, yakking away, chatting about the whole thing like it had been a particularly stressful holiday in Tenerife and then the flight delays were a nightmare and she just wanted to get home now and have a bath and a cuppa.

She was talking. I couldn’t keep up. ‘It took ages to get diagnosed. First I thought I had flu, then I felt so tired I couldn’t get out of bed for weeks and then my GP wouldn’t see me. I went to her and she said I had depression but I knew it wasn’t. I kept going back. Then she refused to see me. The same GP who’s known me 30 years. I’ve been through two pregnancies with her. She didn’t want scans or nothing…

‘I had a transplant from my sister but it was too good a match, too close to my own bone marrow, like identical twins they said, so I relapsed. And then the doctor here’s telling me I have six weeks to live and I should be making my will and I’m not going to see my daughter’s 16th birthday. But I said no. I pleaded with them to give me another transplant and they kept saying they wouldn’t do it. They said it would kill me.

‘But I’m not giving up that easy. I begged for another chance and then they found a donor in Germany. And then he went missing. He disappeared. They literally could not get hold of him. By this point they were saying I had a few days left if they couldn’t find a donor.

‘But they found another donor in the end. The transplant was worse this time round though. They couldn’t put a line in me, it kept getting infected. And I couldn’t have total body irradiation again so I had twelve-hour chemos, with a cannula. I went blind for a few days. They thought I’d had a stroke. That was the worst. I couldn’t see my girls. But, you know, I’m still here.’

The nurse came over with Sunny’s blood results. I was shocked – a bit envious – that her counts were all decent levels; she didn’t even need a transfusion.

emergencydrugs

That was it with Sunny. She was invincible – implausibly unaffected by all the ravages of the nuclear-force treatment that she’d been hit with. She was like one of those lovable cartoon characters that inconceivably springs back to their original self – no matter how many cartoon cliffs they fall off or cartoon cats devour them whole, they’re always back in one piece for the next episode.

I bumped into Sunny on most of my clinic visits. She was friendly with everyone, she called everyone darling. She talked a lot about her daughters, with a fierce matriarchal pride. She was a single mum, and she made it clear that she didn’t stand for any mollycoddling; in her house there was hard work and discipline. Her eldest was going to study law at university, she said.

She talked about her struggle to eat, the appetite loss and the nausea. I noticed her getting thinner and paler. She stopped wearing her wig. She complained of back pain. The doctors sent her off for scans.

It turned out the cancer had spread to her spine.

I knew that the prognosis was not encouraging. But whenever I saw her I said ‘you’ll be alright’. Her confident response every time – ‘I’ll be fine’ was enough to convince me.

One day I was admitted to the ward with a virus, something that happens from time to time. Because my immunity is so low, my body can’t fight off infections by itself – it needs strong intravenous drugs. I had a bed on the bay, with two elderly ladies, and Sunny opposite me. She was meant to be starting chemo the next day. She had suffered a stroke a few days earlier and lost the sight in one eye; she was wearing a patch over it, like a pirate. Her head was completely bald. She said prayers; she had a string of rosary beads. She was weaker than ever. Her mouth downturned at the corners, her speech was slurred. But she still managed to slip outside every now and then for a cigarette.

‘Where have you been?’ One of the elderly ladies asked. ‘Seeing your boyfriend?’ We all laughed.

I remember, later, Sunny lying on her bed while a doctor tried to persuade her to have a feeding tube inserted. She protested. She wanted to eat. She still craved eggs and bacon. He kept insisting: ‘The muscles in your mouth are too weak now to chew anything.’ I remember wishing he’d leave her alone. I couldn’t see the point in prolonging her suffering.

And still I never really believed she would die. Here was a woman who’d defied medical expectations so many times, outlived the predictions, laughed death in the face. So when I was admitted again to the ward a couple of months later, I asked if Sunny was around.

‘She passed away a few weeks ago.’

I felt like laughing. It was a joke. I knew how ill she was but she couldn’t die. She couldn’t be talking and smoking and laughing one day, and dead the next. She was in hospital for god’s sake. You don’t die in hospital – not if you’re only 33. They have intensive care units, there are resuscitation methods. In a modern hospital there is every substance and mechanism imaginable to keep you alive: blood transfusions, oxygen, CPR, insulin, dialysis, IV antibiotics.

There are drugs – there are so many drugs – drugs to salvage every kind of organ failure. This is 2014, they don’t just let you die – she’s 33, she has her girls to look after, they need their mum, how can she not be alive. You’re not meant to go until decades later, when you slip away peacefully in your sleep.

I write all of this because I’m sick of hearing that cancer is a battle that teaches you strength, and you’ll come out the other end a better person (if you come out the other end at all.) I’m sick of hearing someone say they survived cancer because of their positive attitude: ‘I never once believed I was going to die. And that’s what got me through it.’ Or, patting the head of a chuckling toddler: ‘It’s this little chap that kept me going. I knew I had to stay around for him.’

Because dying isn’t a decision, and the fight for survival is not a fight, where the more pugilistic are destined to win. I think of Sunny now with her rosary beads, as I last saw her – staunchly convinced that her God would show her mercy. But it doesn’t matter how relentlessly optimistic you are – just as it doesn’t make any difference how many chia seeds you eat. Cancer doesn’t care about your mental strength, cancer doesn’t give a toss how much you meditate. Cancer, as someone once told me, is an indiscriminate fucker.

And despite my pessimism and my cynicism, I’m still alive. And on my visits to clinic, there’s still one face I half-expect to see. ‘Alright darling. Yeah I’ll be alright.’

 

 

sun

 

The waiting game

One pill makes you larger
And one pill makes you small
And the ones that mother gives you
Don’t do anything at all
Go ask Alice
When she’s ten feet tall

– Jefferson Airplane, White Rabbit

white rabbit

My first round of chemo is over. I should be going home for at least a few days’ respite before I get the second batch.

Except I’m still here. In the same room that I was admitted to five weeks ago. At the moment I’m trapped in the looking glass, playing the waiting game. Waiting for the white blood cells and the neutrophils to get their skates on and move up a few notches.

The chemo killed off all the unruly cells, and left me with nothing for a while. As I was given such a high dose, they’re being a bit slow to recover.

I just wish they’d hurry up a bit. At the moment the old neutrophils seem to be oscillating between 0 and 0.1. They went up to 0.1 for a day, then back down to 0 the next. I need 0.5 before the powers-that-be can unleash me on all the glorious bacteria and infection of the outside world.

The consultant was typically benevolent on the wards round yesterday: ‘We may possibly consider letting you out at 0.4. If you’re practically climbing up the walls with frustration by that stage.’

Luckily there’s all the magic of wondrous pills and concoctions to help me on my way. The nurse on duty (one of my favourites) popped in yesterday brandishing a particularly large syringe.

‘You can either have it in your leg, your arm, or your tummy! Your choice.’

‘What is it?’ I asked.

‘Oh just the growth hormone injection! Haven’t they told you?’

As it turns out they hadn’t.

‘It just gives your bone marrow a good kick up the backside and a push to get moving and producing cells. Healthy cells! Now lean back and breathe out.’

Unlike Alice I didn’t cry. Nor did I end up over nine feet high, or collide with any ceilings. I just got quite a bit of pain in my lower back. Which means it’s working, apparently. The white blood cells were 0.3 today (up from 0.2 yesterday) and the neutrophils are back at 0.1.

So it’s just a matter of waiting now. It’s okay though, I’m sure they’ll be up soon (I hear Pippa’s praying for me.)

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.
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*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?