Bright and early,
Through the curtains,
The sun comes pouring in.
Filling glasses up with diamonds
Tiring where I've been
It's all trigger and effect.
Dominoes at their best.

In the end I'm told it taught me everything I know.
That the wreckage left behind, will somehow make me grow.
But why couldn't I have been safe from the start?
Soundly asleep.

The warmth of blankets makes me nervous.
I'd rather catch a cold.
Like sparks and matches, blink, you'll miss it,
The futures up in smoke.
Though dust has settled,
I smell the ashes buried in my clothes.
It's all trigger and effect, I know...
Dominoes at their best.

In the end I'm told it taught me everything I know.
When the fire took our home, I lost part of my soul.

From the ground up I'll keep building houses into homes.
If trust is a ribbon,
Then patience ties it in a perfect bow.

Xxz

There is a dreadful routine to chemotherapy. It is a predictable poison. After my first few rounds of treatment, the newness faded away to reveal an awful realness. Contrary to what I hoped, chemotherapy was not an extracurricular activity. It was a full-time job.

My life has become synced to a chemotherapy calendar. Each month means a new treatment (a 28-day cycle, which I can do from home, with doctor’s visits throughout). Instead of November, my calendar read: Round Two. (I’m currently in the middle of my seventh round).

I have become an expert at predicting when side effects and symptoms will set in. It’s a ghoulish monthly party — and the guests arrive on time: nausea, vomiting, chills, exhaustion, fever, mouth sores, pain, infections, and emergency hospitalisations.

The Clockwork of Chemotherapy

Despite the “clockwork” of this cycle (start chemo — wait for symptoms — get sick — go to the hospital), at the start of every new round I convince myself that the outcome will be different. This time, I am going to be stronger than my treatment. This time, my mind will outwit my body.This time. 

But over the course of the past ten months, not once have I “won” this secret battle with myself.

The same goes for my current round of chemotherapy. The first day of this treatment started off badly. I went to the movies with some friends. I realised the instant we pulled up to the theatre that I had forgotten my anti-nausea medicine. But it was a Friday night and I hadn’t been out with friends for weeks so I decided to go anyway. Before the movie had even begun, I had already raced twice to the bathroom to vomit. I threw-up five more times, barely making it to the rubbish bin — not to mention the end credits. My friends offered, and even insisted, to take me home, but I refused. Reeling from nausea and exhaustion, I sat through all 124 minutes of We Bought a Zoo as if my life depended on Matt Damon and his sappy-but-kind-of-charming narrative about a farm of animals.

Why? I needed to feel like I could “tough it out.” I wanted to “beat” the symptoms; to take them to war.

Toughing It Out: The Battle Language of Cancer

Where does this mentality come from?

The cancer world is awash in battle language. Like mantras, our culture repeats these war-like phrases over and over. A few weeks after my diagnosis I even saw a poster that said: Fuck Cancer. Pithy! Cancer books love to traffic in this take-no-prisoners language. They talk about cancer “warriors” engaged in a battle for health and they encourage patients to visualise chemotherapy as a sea of soldiers entering the blood stream to fight off the enemy disease. In a lot of ways, it’s an attractive line of thinking. It’s the hero’s journey mixed with the glorification of war. It’s the us-versus-them theme — except in this case it’s us-versus-us. Cancer is one’s own civil war.

My reaction to challenges has always been to fight hard for what I want. I have always prided myself as a “doer.” In this way I’m probably like a lot of my peers: I like to compete. I like to push myself. I like to win. When I started treatment, it seemed like a no-brainer: I was going to take on cancer like I’d taken on everything else before this.

But as much as I “battle,” I haven’t outwitted chemotherapy and its punitive, punctual side effects. As I write this, I am deep-in-the-bone tired, nauseated, and I haven’t left my bed in two full days. It is difficult not to equate sickness or weakness with a feeling of failure. 

Shedding the ‘Win-Lose’ Mentality

Today, as I finish the last day of this most recent round of treatment, I can officially say that I’ve “lost” once again — but I haven’t lost in the spiritual or medical sense. Instead, I’ve lost in the Manichean world of “win-lose” thinking. And I’m glad I did. I am realising that “beating” cancer isn’t about winning or losing. I wish it were, but it just isn’t.

I’ve decided to take my new “fight” to the win-lose mentality itself. The battle I’ve been waging in the past months has been centered on fear and anger about not being able to do what I once could. In short: feeling entirely unproductive. And for someone who defines himself by doing, this can seem like a pretty bad fate.

Today, instead of pursuing the impossible defeat of mostly unavoidable side effects and symptoms, I’ve decided that my challenge will be to develop a new brand of acceptance: a strong acceptance, a muscular acceptance, but still: acceptance.

Acceptance is not supposed to be part of the lexicon of successful people. Or so we are often told. But I’ve learned that you can’t fight your way out of every problem. The solution to some challenges is not to charge full speed ahead. If this approach feels counter-intuitive, (which it often does), I try to remind myself that chemotherapy, too, is illogical on its face: you are poisoned in order to be cured.

I realise now that the experience of having cancer is more of a tricky balancing act between being proactive about your medical condition, while simultaneously accepting and surrendering yourself to the fact that — for the time being — you can’t change your reality as quickly as you’d like to. Acceptance is not giving up — far from it. But like a prisoner in handcuffs, the best way out may be patience. Trying to wriggle your way out only wastes precious energy. And it can make you go mad.

Day 1

No matter what I do — skip breakfast, set multiple alarms or go to sleep early the night before — I always seem to arrive at the hospital exactly 30 minutes late for my appointments. Today is Monday, and it’s the first of five straight days I’ll go to the hospital to receive outpatient chemotherapy injections. Then I get three weeks off. Then another week of chemo. And so on. My doctors say this will be my routine for the next year.

My 30-minute lateness buffer has become so consistent, I’m almost proud of it. I am on time, but it’s my time. Maybe I’m secretly hoping that if I show up late enough I’ll just be let off the hook, told I can take the day off. I set out for the hospital by cab; it’s the only way I can travel, for now, because with my weak immune system, public transportation is still off limits. 

“Your eyes look red,” Abby says when I finally arrive. She’s one of my favourite nurses.

I’m just tired, I begin to tell her, which is true. I haven’t been sleeping so well lately, a mix of restlessness and staying up late watching movies. Then all of a sudden I find myself tearing up. Then full-on crying.

The crying surprises me, but I’ve been feeling down ever since I learned I would need to start chemotherapy again. My doctors say new research shows that for patients with high-risk leukemia, preventive chemo may be beneficial after a bone marrow transplant.

An attendant comes to the room to tell me that they are ready for me in the infusion suite. “I’m sorry,” I tell Abby as I start to cry again. “I’m just really tired.”

Day 2

I’m standing on a street corner in the middle of the city. I’m not feeling the effects of yesterday’s chemo, but I have a sore throat coming on. The sun is pounding down on my head. I’m feeling a little dizzy from the brightness outside, and I wish I had brought some sunglasses. (This week I have about a quarter-inch of new hair, evenly growing in.) It’s just past 9 a.m., and someone’s trying to hail a cab on each corner of the street. Welcome to Sydney. I sit down on the curb to rest. Finally I get a cab. The driver seems nice, an older man with a slight Jamaican accent.

As we speed up George Street, I catch a glimpse of a young woman cycling on a bike path. She’s about my age, tan, her blond ponytail moving in the wind. Someday I’ll ride a bike, too. When I’m well enough. But for some reason I find myself thinking about how silly I would look in a bike helmet. A sick, skinny guy with bony elbows and peach fuzz for hair – and a ridiculous oversize helmet.

“Hel-lo, anyone there?” the taxi driver says. We’ve arrived, and I have been lost in my thoughts. “Anyone home?” he repeats. I have this running joke in my head that when strangers ask me how I’m doing, I’ll unload a monologue about my latest cytogenetic report. But the driver is just trying to be nice. I know he doesn’t actually want me to tell him about how chemo can make a person fuzzy and scatterbrained. Or that I’ve become quasi-narcoleptic in public. “I’m just tired,” I say.

Day 3

It’s my third day of “Chemo Week.” I’m dragging a little today, but I have something to look forward to: There’s going to be a television crew filming my appointment for a project about young cancer patients.

It’s a strange thought to consider how you may look on camera when you’re receiving an injection. My arms are sore from the previous days’ injections, but I don’t want to ask to have the injection in my stomach because I feel self-conscious about baring my midriff on camera.

Having a film crew in the infusion suite is a self-conscious affair. The crew members are careful to respect the confidentiality of the setting, but I’m worried I’m creating a scene in a place where there are usually no cameras. At least there’s hope the project will be real and raw and tell true stories. One thing they’ll never relay to the audience, though, is the unmistakable smell of the hospital.

I feel the sharp pinch of the needle in the fleshy part of my left underarm. It burns for a few minutes, and then the stinging sensation is gone. I’m free to go home.

Day 4

I wake up feeling as if I’ve been hit by a truck. My sore throat is worse, and now I have a runny nose and a cough. The delayed effects of chemo are setting in. As someone with a compromised immune system, I go through a priority checklist in my head whenever I notice any symptoms. Not all symptoms are an emergency, but none can be dismissed outright. A fever higher than 38 is an instant ticket to urgent care, so I’m checking my temperature regularly now.

At the hospital, my nurse notices that my breathing is laboured, and I’m sent downstairs for a chest X-ray. It could be a problem with my lungs, a possible side effect of chemo, but it also could be nothing. I change into the robe they give me. The last time I had to wear one of these, I was in a hospital bed in the bone marrow transplant unit. I am not fond of robes.

In the X-ray waiting room, the TVs are blasting “The View.” There is a skinny boy, no older than 7, sitting across from me. A man who must be his father sits next to him. You can’t always tell the patients from the caregivers in a hospital. He looks like a relatively healthy boy. Then I see a small scar on his head, almost unnoticeable beneath short hair. He’s sticking his tongue out at his father. I hope it’s nothing too serious, but still, not a fun place for a boy to be on a sunny spring day.

Day 5

For whatever reason, the waiting room is packed today. I recognise a handful of the patients from previous visits, but you never know everyone at the hospital. There are always new faces. One girl, about my age, I’ve seen before. She is a fellow cancer patient with a different form of leukemia. I am shocked by how much her appearance has changed since I saw her last. Her face is gaunt, and she looks weak. She tells me she has just learned that her disease may have returned. She’s waiting to find out more.

We both say the F-word at almost the same time. I don’t swear very often, but it just comes out. There’s a pause, and then we both break into a burst of laughter at the strange harmony of this.

My name is called, and the girl offers to accompany me to the infusion suite down the hall. My injection is over in a few minutes, but as I’m getting up to leave I notice that she’s still seated, and that the nurse is setting her up for her treatment. I offer to stay, but she insists that she prefers to be alone. We exchange phone numbers. As I’m leaving the hospital, I kick myself for not insisting on staying with her. I wanted to give her a hug, at the very least. But there’s an unspoken no-contact rule between patients for fear of getting each other sick.

After five days of appointments, I’m ready to climb into bed.

I used to resent the battle metaphors associated with cancer. “Keep fighting,” people would say. “You’re going to win this war,” a friend would write in an e-mail.

I could appreciate the intent behind the word, but I just couldn’t identify. Most of the time, I didn’t feel like battling at all. I was just doing what I needed to do to have a shot at surviving. Many people told me I was brave. But I didn’t feel brave. I was simply following the orders of my doctors.

A battle, to me, suggested some kind of active combat, with weapons and soldiers by my side. But most of my cancer journey has been spent lying in a hospital bed in isolation, feeling alone and defenseless, hoping for the best. Some people like to visualise chemotherapy as a surge of soldiers entering the bloodstream to wage war on the cancer cells. But this never worked for me either.

Cancer is mostly an internal affliction. My cancer lived through my body and was completely invisible to me. It was difficult to fight an enemy that I couldn’t see, feel or touch. After finding out I had cancer, I didn’t feel like a fighter. I was scared and realised I knew almost nothing about a disease that had a big head start on me.

But last week, I woke up feeling frail, tired and seasick in my own bed. It was a dreary Friday morning, and it was the last day of my seventh round of chemotherapy. I simply could not conceive of getting out of bed and dragging myself to Prince Of Wales Private Hospital for my treatment. It wasn’t because of my physical symptoms. I’d been much sicker before. But after a year and a half of nonstop chemotherapy treatments and a bone-marrow transplant, — for the time being — my doctors were advising more chemotherapy to prevent a relapse.

The road ahead seemed never-ending. I had reached my limit: No more bone marrow biopsies. No more doctor visits. No more antinausea medication. I wanted to be done. For the first time since my diagnosis, I felt like giving up and quitting.

Then I surprised myself. I knew that realistically, I couldn’t abandon the chemotherapy because it was the only possible way to a cure. So I gave myself a pep talk using the very same battle metaphors that had annoyed me in the past. I imagined myself as a warrior in battle — both with my cancer and with myself. The image empowered me and motivated me to get out of bed and go to the hospital to receive the last injection of this round of chemo. During the cab ride, I told myself, over and over: “Don’t quit. Keep fighting.”

It worked, and it made me feel better. But this is the Catch-22 for a cancer patient: We must poison ourselves in the short term to hope for a cure in the long term, knowing full well we will get sicker before we get better. And the worst of it is knowing that certain types of chemotherapy can cause secondary cancers. But it’s a trade-off nearly every cancer patient accepts.

Sometimes getting through chemotherapy is all about ignoring the voice in your head that screams “stop.”

Put your dreams away for now
I won’t see you for some time
I am lost in my mind
I get lost in my mind

My mum once told me
You’re already home where you feel love
I am lost in my mind
I get lost in my mind

Oh my friend
Your wisdom is all that I need
Oh my lover
Don’t you worry ‘bout me
Don’t you worry
Don’t you worry
Don’t worry about me

How’s that bricklayin’ coming 
How’s your engine running
Is that bridge getting built
Are your hands getting filled

Won’t you tell me my lover
Cause there are stars up above
We can start moving forward

How’s that bricklayin’ coming 
How’s your engine running
Is that bridge getting built
Are your hands getting filled

Won’t you tell me my lover
Cause there are stars up above
We can start moving forward

Lost in my mind
Lost in my mind
Oh I get Lost in my mind
Lost, I get lost, I get lost in my mind
Lost in my mind
Yes I get lost in my mind
Lost, I get lost, I get lost
Oh I get lost
Oh I get

The summer sun will set she said

If you leave it up there long

Take its beams and moon-time dreams

Leave town and be gone

I guess you can call that truth

I will call it lie

I will think of times gone by 

When you and I were fine

I will hold those days up to my eye

Sometimes I don't know what you were thinking of

All I want is someone to love

Take your time and talk to him

It matters not at all

I will give you time enough 

To know him very well

I am locking down the house

Staring at the wall

All I want to do today is sleep like I once could

If you could give me that

That'd be good

Sometimes I don't know what you were thinking of

All I want is someone to love

All I want is someone to love

And you were pretty good to love

And you were pretty good to love

One unexpected aspect of falling ill is, to sum it up in a word: awkwardness.

People often feel awkward when broaching the subject of illness and cancer in particular. What can I do? What do I say? How should I say it? Should I say anything?

From my end, I can tell you that it’s awkward for the patient too. How do I deal with friends who are clearly at a loss for what to say? How do I respond to the question, ‘Is there anything I can do’? When people ask me ‘How are you,’ do they really want to know how I am, or do they just want to hear that I’m ‘Doing ok’? How do I talk about radical changes in appearance (if at all), such as baldness?

The list goes on.

I’ve struggled with this awkwardness–these questions–since the very beginning of my diagnosis. With much reflection and input from friends and family, I’ve come up with a few tips and suggestions. 

 Secrets of Cancerhood #1: Say the Unsaid

What’s in a name? When you’re talking about the name of a medical diagnosis, it can mean everything.

Don’t be afraid to call your condition by its name. It will be daunting at first, but you will find that it gets easier each time you say it.  Conquering the vocabulary of your disease is not just a semantic exercise.  It’s a vital first step towards shedding your denial and looking your new reality in the eyes.

At first, I was incapable of pronouncing the term pituitary macro adenoma without choking on my words. I didn’t want to recognise it.  It was too big and scary. And as long as I avoided it, I noticed that everyone else followed suit. The disease became the proverbial elephant in the room, growing more and more menacing with each conversation.

Talking openly about what you’re going through is contagious (in the healthiest sense). Illness has a mirroring effect that can be counterintuitive: it’s often the caregivers who take direction from the patient. You set the tone. As you open up about your condition, you indicate to your friends and family that it’s OK to talk about what is happening to you—both the good and the bad.

In my experience, some of my visitors seemed so intent upon not upsetting me that they avoided the topic of cancer altogether. I can’t blame them, but by eschewing the reason I was there in the first place, they left me feeling more uncomfortable and less reassured than before. I made it clear to them that there is no perfect thing to say, but that you have to say something. No one can “feel your pain,” but if you don’t talk about it, you are setting yourself up to feel isolated and misunderstood.

Openness has the effect of moving the disease from the subtext to the foreground, stripping it of its power to silently infect and distort the conversation. Once it’s out there, you might be surprised to find that the conversation will move fluidly from heavier topics to lighter ones.

Echos of another time

Playing lightly on my mind

There's many rivers still to cross

Temper the bitterness of love

Though what you say is true

This might be it for me and you

Maybe we can draw that line

Maybe another time

Well I wanna do what's right

But maybe not tonight

Memories of another town

Those pretty eyes, that pretty frown

And in the long grass where we lay

And let the whole world fall away

And though in time we walked apart

You were always in my heart

Maybe we should say goodbye

But maybe not tonight

I remember you were just a child

Burning brightly and running wild

We embraced on a January night

No priest, no church, just the big moon shining bright

Maybe we should be moving on

And figure what is done is done

Maybe we should break those vows

Oh, but maybe not right now

Maybe we should do what's right

Baby not tonight

Maybe we should both just do what's right

But baby not tonight

If it takes a village to raise a child, you might say it also takes one to care for the sick. Cancer is at once personal and communal. Disease lives in the sufferer’s body but the experience of illness is shared, often intimately, by our loved ones. And yet, caring for the sick can feel like writing a travelogue about a country you’ve never visited. You can’t know where you haven’t been.

“What can I do to help?”

This is the sincere, often reflexive, response people have when they find out I have cancer. When I was diagnosed in June at the age of 20, the news of my diagnosis spread, my friends, acquaintances — and even some strangers — formed a loving support network. It was a comforting reminder of how selfless people can be.

But while most of my friends and family would help me in a heartbeat, knowing how to help can be a daunting, even paralysing, challenge. Over the past eight months, through seven hospitalisations and six rounds of chemotherapy, mum and I have sustained a running dialogue about what it means to be a caregiver and a care recipient; what it means to be in loved by one another while my body’s at war with itself.

This guide to helping a friend with cancer is built from parts of our many conversations on the subject of care giving.

1. Say “I don’t know what to say” – A cancer diagnosis can paralyse the lines of communication between friends. Some people freeze up and don’t say anything at all, while others dwell on finding the “perfect” words. If you’re at a loss for words, say so. If you have a lot to say but don’t know where to start, say that, too. Honesty rules. I’ve never felt offended by someone who doesn’t know what to say, but I’ve felt hurt by those who don’t call or write at all. Don’t let the perfect be the enemy of the good.
2. Be an equal opportunity listener – Cancer is a gloomy subject — there’s no pretending otherwise. While your instinct can be to immediately steer the conversation towards the cheerful, it’s vital for a cancer patient to feel comfortable venting feelings of fear, sadness, anger, loss, and isolation. One of the most important things you can do as a friend is to make it clear that you are willing to listen to both the good and the bad.
3. Assess the specifics – Cancer patients are often too tired or too polite to respond to the broad question of “How can I help?” Take the lead and ask specific questions. Without being pushy, you’ll find areas where you can step in: Who is going to look after them during the day? Can they prepare their own meals? What about transportation? Are there other people close to the person with cancer who also need support?
4. Do what you do best – Do what comes from the heart and follow through. Remember that the patient doesn’t expect you to compose a song if you don’t play an instrument. Lending a hand is easier when you do what’s in your wheelhouse. If you love to cook, drop off a homemade dish; if you’re an artist, make something to hang on the hospital room wall; if you’re an organiser, offer to gather research or to take notes during medical appointments.
5. Take care of yourself – You hear it a lot: caregivers must take good care of themselves, too. No matter how upset or stressed out you are about your friend’s illness, it is critical to be selfish about your own health. Nutrition is important, especially because “comfort foods” beckon in times of stress. Regular exercise, even walking, is crucial for the body as well as the mind: some of the best thinking happens when your body is in motion. Perhaps most important of all is getting enough sleep. Love does, in fact, have boundaries. You must take care of yourself to be the best ally to your friend.
6. “No need to write me back.” Since my diagnosis, I’ve been showered with the warmth of letters, emails and cards of support. These messages, filled with love and positive energy, are my daily reminders that I’m not alone in this struggle. But finding the energy to write back can feel like an herculean task. Dissolve any potential stress for the patient by reminding him or her that there’s no need to respond or write a thank-you note.
7. Distraction is a godsend – While you should be careful joking about cancer (everybody’s sensitivity differs), some juicy gossip, a funny joke, or a good movie can go a long way in lifting someone’s spirits. Humour may feel out of place next to IV bags and bedpans, but it can be an essential counterweight to the gravity and absurdity of cancer. Don’t feel like you can’t be the bearer of good news. Bring magazines, music, stories and sunshine.
8. Get involved in the cause – As someone who will be receiving a bone marrow transplant, I am deeply moved by my friends who have signed up to become bone marrow donors or taken time to learn about my disease. Sign up to be a bone marrow donor, give blood, organise a fundraiser, or donate a sum (however small) to cancer research or an organistion of your choice. It’s a gesture acknowledging that cancer affects communities of strangers as well as the people you know.
9. “It’s time for me to go” – Long visits don’t necessarily mean better ones. Visits needn’t be rushed, but keep in mind that the sick person doesn’t have the same energy level as you do. Be attentive to signs that the patient needs to rest.
10. I love you If there’s ever a time to tell a friend how much you care about them, this is it.

And pains made me the man I am

But I don't want your pity please

I've learned more than I could share

I healed my heart

On a walk in the dark

On a walk in the dark

And the loves made me the man I am

Don't be afraid you've hurt me

I'm stronger than you think

I healed my heart

Let it glow in the dark

Let it glow in the dark

And through this life

I've learned to love

What I've become

I've learned to love

What I've become

What I've become

Even if a day feels too long

And you feel like you can wait another one

And you’re slowly giving up on everything

Love is gonna’ find you again

Love is gonna’ find you, and you better be ready then.

Well you’ve been kneeling in the dark for far too long

You’ve been waiting for that spark but it hasn’t come

Well I’m calling to you please, get off the floor

A good heart will find you again

A good heart will find you, just be ready then.

Tethered to a bird of sorrow

A voice that’s buried in the hollow

You’ve given over to self-deceiving

You’re prostrate, bowed but not believing

You’ve squandered more than you could borrow

You’ve bet your joy on all tomorrows

For the hope of some returning

While everything around yous burning

Come on we’ve got to get out, get out of this mess we’ve made

And still for all our talk, we’re both so afraid

Well will we leave this up to chance like we do everything?

Love is gonna find us again

Love is gonna find us, you’ve gotta be ready then 

Tethered to a bird of sorrow

A voice that’s buried in the hollow

You’ve given over to self-deceiving

You’re prostrate, bowed but not believing

You’ve squandered more than you could borrow

You’ve bet your joys on all tomorrows

For the hope of some returning

While everything around you’s burning

But I’m not leaving 

But I’m not leaving 

I’m not leaving, I’m not leaving

I’m not leaving, I’m not leaving yeah

Yeah I’m hanging on, I’m hanging on

For what’s gonna’ come

I’m hanging on

Hanging on, hanging on

Hanging on, hanging on

Hanging on, hanging on

With the faithful

I’m with the faithful

I’m hanging on

For what’s gonna’ come

For what’s gonna’ come

Hanging on

Hanging on

With the faithful

The faithful