Yesterday, I went for my barrage of routine tests. Drink this, lay here, breathe in – from x-ray to ultrasound to bone density it is a lot like speed-dating. You are handed from nurse to technician -each of them fondling you or fiddling a machine for an allocated number of minutes before palming you off to the next brisk talking staff. At this centre, they even give you a white card to check off as you play.
I, of course, showed up late missed my appointment and as punishment found myself in the abyss of hospitals – the waiting room. Sitting there holding my book but mostly craning my neck to see if my queue number was up, I didn’t notice her till she stood up. An elderly lady in bright red capris, a floral blouse and her hair piled glamorously upon her head in a bun.
It is hard to say why some people intrigue us over others – but I smiled at her and she smiled back. And then my number was called and I threw myself at the receptionist – desperate to get myself into the circus and out as quickly as possible.
But these things are never quick and so between my first and second prodding – waiting in that modesty challenging blue gown – I found myself sitting next to her again. In a huff, she had sank onto the cushion – spitting out: “Mammograms are so awful. I am still shivering from the pain.”
I laughed at this familiar reaction and offered; “It must have been invented by a man.”
She seemed delighted by this and we got to talking.
Now 75, she had been diagnosed with Stage II breast cancer 6 years ago -so she need only endure the humiliation of this conveyor belt twice a year. With her husband sweetly trailing behind and carrying her purse as she moved from machine to machine – she seemed interesting. I wanted to be her friend and be invited to her house for hot-pot and bubur cha cha. I wanted to be her. Old. Instead I settled for a long conversation where she told me she had been a stock-broker most of her life and this diagnosis came out of nowhere and we discovered we shared the same oncologist.
Then, suddenly, abruptly – she sighed; “Life can be so miserable.”
Without hesitation I found myself replying; “At least we’re alive.”
She smiled, nodded. Then a nurse summoned and in the maze of hallways and waiting rooms – I didn’t see her again.
Today, I collected my results. There is a shadow on my liver. Tomorrow, I will know more.
And all I can think is; I want to grow old too.
There are inconsistencies in the stories I have started to spin about me. Often I lie. I explain away the absence of my hair – as the heat being too oppressive for any other length. I’ve shorn the sides – so it looks like a deliberate hairstyle. My father summed it up as, “punk” – but it works and people believe me. I attribute the chemotherapy burns on my right arm to a birthmark and I fudge the truth about my unemployment this past year with the very vague, “I’ve been freelancing.”
But sometimes I am candid – and I tell whoever asks about the madness that made up these past months. Some have met my pronouncement with obvious relief – that this didn’t happen to them. One even reached over me to superstitiously “touch wood” and ensure that her health remains intact. And I am amused. She couldn’t quietly thank the gods in her head? Seriously? I am sitting right here.
Usually though, it is pity. The pity I can stomach. If I am being honest, I even appreciate the pity on some deranged level – because for all my efforts to move past this, I do feel sorry for myself and if I ponder about what has happened and everything I’ve lost for too long – all my calm unravels. So I try to avoid this.
It is strange – this post-treatment life. My eyebrows and eyelashes have returned – this has helped me return to normalcy in a way that the last day of treatment failed to. I haven’t been blogging – because what is there to say, really? That today I woke up and I worried that the cancer had recurred? That last night, I struggled to fall asleep as I laid there contemplating the reality of my life expectancy and the meagre capabilities of my insurance plan. It is the same worry – every single day. I worry about my death and I worry about my life.
It is unbearable.
I joined a cancer-support group and there I met a man with stage 4 melanoma and his calm in the face of this death sentence moved me. I drove him to the support group and on the drive over, we would talk. He about his fear of leaving behind his two little girls without a father and me about my anger at being robbed of my youth. But he was lovely and he was optimistic. He didn’t want to get bogged down in the statistics that predicted his survival. “I’m alive today and I’ll probably be alive tomorrow,” was his maxim.
He died last week.
And yet – it isn’t that hard.
Z made delicious crab curry on Sunday and we sat around watching Bollywood video clips. My father bought me a beautiful rosewood rocking chair to sit and read in. In this way my days are – dare I say it? – good.
Money is a little tight so I’ve started looking for a full-time job and the tedious task of cover letters is proving far more painful than chemotherapy – but I got to keep moving forward, because really what else can I do?
Last night I got drunk. I roamed a little bit of my island, inebriated and clutching onto a friend – giggling and gleeful. This may not seem worthy of an announcement – but to me it is significant – it was the first time in a long time I had fun. Actual, genuine, uncluttered by cancer fun. And what really thrills me is that my diagnosis came up in conversation numerous times but it didn’t dampen my spirit and at the end of the evening when I got really angry and outraged – venting and fuming about the state of it all. It, finally, wasn’t about my diagnosis but the politics of my country. I am not deluded. I understand the road to recovery is long and slow and there will be good days and bad days – and when I reach the end I still won’t be me at all. Not entirely. But last night? Last night I got drunk.
There is much to say.
Two days ago, I completed my last dose of chemotherapy.
I dropped hints the entire day for a celebratory party – and by hints I mean I shamelessly asked for balloons and cake from the nurses in the clinic but alas no success.
Chemotherapy has been a strange experiences – I’ve had 3 different regimes in 2 different clinics with so many different nurses. I much preferred my first clinic – it was a warmer place. The more recent one is so busy, they could never remember anything. Every-time I walked in they would ask some three times, why I was there.
“Are you here to see the doctor?”
3 minutes later.
“You’re waiting to see the doctor?”
And on it goes.
I know it may seem trivial but it is difficult to explain how daunting being in the hospital can be. Taking the lift up – you’re acutely aware of how this is a place for the sick and the dying. Before I got sick – whenever I found myself in a hospital for visits I would speculate how suffocating it must feel to be at the mercy of this building and the doctors behind their heavy clinic doors and I felt sorry for them, the ill. But back then, I could wrap up my visit after a brief spell – and saunter back out into the world – healthy. Now I’m one of the sick and there is no sauntering back out into the sunlight. Now I can feel other people in the lift staring at me, my bald head, the burns on my arm – and I can hear the pity whirring their minds. So being made to constantly confirm my status as sick repeatedly is depressing and I resent the clinic for this – perhaps unfairly.
When you show up for chemo – you are first subjected to a blood test to ensure your white blood count is normal. They draw blood, stick a plaster over the hole and send you off for lunch while they churn out the results. Then you return and they stab you again for the IV.
I found this to be ridiculous and unnecessary.
So, by my second dose – I figured out that they could simply leave in the cannula when they draw the blood for the test saving me a second prick. And for the seven doses that followed this is what I did.
Except for my last round – I was so excitedly jabbering away to SK that I didn’t realise the nurse who was drawing out the blood didn’t have a cannula and instead she removed the needle and plonked on a plaster.
I looked at her in genuine surprise and inquired why they weren’t doing what I had requested for all the previous times.
“Oh I had no idea,” she says by way of explanation.
“I always get the cannula put in immediately – isn’t that in my file?”
“Well, it is not so painful right? You can always do it again later.”
So I lost it.
“It isn’t about how painful it is or it isn’t to you – if I can avoid an additional needle, why should I not be spared it?”
And as I spoke, I found myself fighting back tears – so I stood up quickly, walked out of the clinic and suddenly I’m in the middle of a melt-down.
This being her first time as chemo-companion, SK was utterly lost by the tears over one more needle.
“It won’t be so bad,” she says soothingly.
“I hate this clinic!,” I spit out. “I hate that my doctor says “leaky leaky”, that they burned me and they don’t seem to remember anything about me – what I’ve asked for or need. I feel like I made a mistake choosing to switch to this clinic. I worry I’ve made so many mistakes dude – from choosing doctors to drugs. What if it doesn’t work man? And this has all been a waste of time. I’m both relieved and terrified today. At least when I am on the chemo – I am doing something, I am fighting this disease. Once the treatment ends, I have to leap off the ledge and simply hope for the best,” I sputter all of this out, between sobs and rubbing the supply of tissue SK hands me all over my snot-covered face.
Then I exhaled, walked back in, told the nurses to expect me back in two hours and off we went for a lunch of pasta, hot chocolate, and chocolate crepes- till I felt better about this nervousness I’ve been carrying about the end of treatment.
To be fair, chemo hasn’t been this bad every-time these past months. It has been pretty bearable. In a way, I know I am very lucky within the sphere of my bad-luck.
The clinics are swish, with large windows and cups of Milo. Sometimes I get a private room so there is plenty of space for me and the friend who has followed me – usually it has been Z – to spread out and chat till the anti-allergens in the IV causes me to doze off beneath a mountain of blankets.
Often we get food too.
Three weeks ago – the nurse walked in to find a fast food feast spread out before us.
“I like to eat healthily before a dose,” I remark dryly.
She doesn’t laugh. Tough room. I wonder how annoying a patient I am – with my cannula demands, the food I show up with, the noisy chatter and the screeching every time a needle comes close to me. I am not a brave person, this much I must admit.
But most of them – despite my hysterics – have been very lovely. They smile and call me “sweetie,” pat me on the ass tell me I am looking sexy when I turn up in shorts, patiently cover me in blankets till I am no longer shivering and they entertain my countless questions about everything – from the order of the drugs to how regularly do the nurses end up marrying the doctors.
“I hear my doctor’s husband died of cancer,” I asked one nurse.
“Yes,” she says fussing over me with a blanket.
“Isn’t that a terrible sign you think? That she couldn’t cure him?”
“No!,” she shushes me. “You have a different cancer – everybody is different.”
I shrug, not entirely convinced. But what can I do? My surgeon insisted this oncologist was the best – so I ended up here.
Once the IV is in my hand, it starts. The process lasts up to three hours and is painless but if not administered carefully the drugs can (and has) burn my veins. That big juicy vein in my cubital fossa (that’s elbow pit to you and me) has also been destroyed. A friend tells me to lie about the cause of these busted veins.
“Tell em’ you’re a druggie – give yourself some street cred.”
But now that I have pushed through this chemotherapy business – I am no longer a druggie! And with any luck, I never will have chemotherapy again. May something other than cancer kill me, I pray.
Up next? I get through the 3 week cycle of this dose before I am carted off for 4 weeks of daily radiation.
And then – I am done!
Till my check-ups. In another clinic because despite my surgeon’s preference, this oncologist does not make me feel comfortable any-more. So I’ve found another doctor – one who has been diagnosed with cancer too and is currently treating himself. Isn’t that odd? I tell J it is almost poetic. The cancered clinging onto each other.
But yes. Check-ups. Every 3 months for 5 years.
Sigh. I am firmly planted in the world of the unwell for a long time to come.
At least my hair will start to grow back.
“If you believe that your recovery depends on your attitude, then you feel this terrible pressure, like ‘How can I be positive when I’m so miserable?” said journalist and cancer survivor Barbara Ehrenreich in her new book Bright-Sided, offering compassion as an alternative.
The seed for Bright-Sided was planted ten years earlier when Ehrenreich, newly diagnosed with breast cancer, got a hefty dose of the “pink ribbon culture’s” exhortation to just thinking positively, which, she writes, “attempts to transform breast cancer into a rite of passage – not an injustice or a tragedy to rail against, but a normal marker in the life cycle, like menopause or grandmotherhood.” The seed germinated years later when, while researching a book about white-collar layoffs, she realized those who’d been downsized got the same line as people with cancer.
“I began to see how ubiquitous it is in our culture,” she said, and then recited, “This is not a bad thing, this is an opportunity for growth, and renewal, blah blah;” and “you have to think positively to get through it” – because nobody wants to be around anyone negative!
“It’s cruel and it’s also false,” Ehrenreich said.
Dr. Groopman has seen it from the other side of the stethoscope. “It’s wrong, it has no scientific basis and it’s very, very cruel to the patient,” he said, “because you’re basically saying you’re responsible for your cancer and because you’re having negative thoughts or because you’re despairing, you’re going to be responsible for your own demise.”
Indeed. “The failure to think positively can weigh on a patient like a second disease,” wrote Ehrenreich.
Psychiatrist Jimmie Holland has seen that happen far too often. She wrote in The Human Side of Cancer, about the “Tyranny of Positive Thinking.”
“For most patients, cancer is the most difficult and frightening experience they have ever encountered. All this hype claiming that if you don’t have a positive attitude and that if you get depressed you are making your tumor grow faster invalidates people’s natural and understandable reactions to a threat to their lives.
An excerpt from 20 things people with cancer want you to know by Lori Hope, courtesy of J.
It started off innocently enough, a red line running down my vein. (Ignore the black paw, that’s LKY either being supportive or trying to weasel his way into my shot)
And then it got increasingly worse, till it became a sprawling and unsightly burn on my arm.
So I went to my oncologist and asked her why this happened since I survived the harsher and stronger drug without a single scar in my previous clinic but have ended up so badly burnt with the milder drug.
She took my arm, stroked it and said “You might have leaky veins.”
“How is that? Won’t my blood be gushing out then?”
“Hmmmm, it happens. This is nothing – it is just a leaky leaky.”
And that, my friends, is a direct quote.
My brother and I had to laugh – and then we changed oncologist.
Leaky leaky? Seriously?
Have I said I am not a fan of doctors?