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

I'm working on the high hope

And if it all works out you might just see me

Or hear from me in a while

I'm gonna make it across this tight rope

And I'm coming for my prize

No more I'll be waiting 'round while life just passes by

Maybe when our hearts have realigned

Maybe when we've both had some time

I'm gonna see you there

I'm gonna see you there

There

And we can be natural

There

'Cause I've been living in a half light

Not sure which way to turn

Why must a man lose everything to find out what he wants?

But I'm gonna wait until it feels right

And when that time has come

Wild horses won't keep me back from where you've been gone

Maybe when we're both old and wise

Maybe when our hearts have had some time

I'm gonna see you there

I'm gonna see you there

There

We can be natural

There

After all we've seen we can do anything

There

Where your heart is strong

Where we can go and on

There

Where your good times gone

Where we are forever young

There

Where your heart is strong

Where we can't go wrong

There

I wanna see you there

There is a dreadful routine to chemotherapy. My life has been synched to a chemotherapy calendar ever since my diagnosis last year. I have become an expert at predicting when side effects and symptoms will set in. It’s a ghoulish monthly party, and the guests always arrive on time: nausea, vomiting, chills, exhaustion, fever, mouth sores, pain, infections and emergency hospitalisations.

But over the past year, after 28 rounds of treatment, not once have I “won” this secret battle with myself. Despite the clockwork of these cycles (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.

The cancer world is awash in battle language. Our culture repeats these warlike phrases over and over, like mantras. Cancer books love to traffic in this take-no-prisoners language. They talk about cancer “warriors,” fighting and winning a battle for health. They even encourage patients to visualise chemotherapy as a sea of soldiers entering the bloodstream 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.” I like to compete. I like to push myself. I like to win. When I started treatment, my plan was to take on cancer like I’d taken on everything else in my life.

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. 

I am realising that “beating” cancer isn’t about winning or losing. I wish it were, but it just isn’t.

I’ve decided that the real battle I need to fight is against this win-lose mentality. During the past few months, I’ve been fighting myself in many ways, succumbing to fear and anger about not being able to do what I once could.

But today I’ve decided that my challenge will be to develop a new brand of acceptance. Cancer has taught me that you can’t fight your way out of every problem. The solution is not to charge full speed ahead. It’s counterintuitive, but 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: being proactive about your medical condition, while simultaneously accepting and surrendering to the fact that, at least 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, you only waste precious energy by trying to wriggle your way free. With cancer, the best way out may just be patience.

I'm growing old

And these goodbyes are breaking my heart

Before I start 

To forget it all

Time erased me.

And i'll rest my head

Like the moon falls through the trees

And it comforts me,

Tells me not to be scared.

And time,

It will not erase me.

For what is time?

It's just passing by.

And we all are born and we fall apart

In endings and starts.

The first time I was hospitalised after my diagnosis — 10 months ago — I was placed in isolation in a drab room where the windows didn’t open. An electronic bracelet was strapped to my wrist, and I was issued a backless hospital gown. A triple-lumen catheter was surgically implanted in my chest to create a central line through which chemotherapy and fluids would be administered. I was all tied up, with both limbs connected to a monitor holding a ring of hanging IV bags.

I dubbed this moment my “incanceration.”

I couldn’t help but feel a bit like an inmate shackled to the schedule of the outside world. I remember guiltily feeling envious, and eventually somewhat resentful, of my visitors when they left my room. “I’m taking a break, and I’ll be back soon,” a nurse would say. I could understand this, but it also made me angry. I, too, desperately needed a break.Over the course of the next 5 weeks, I would have a lot of time to reflect on the hospital experience. Cancer has a way of issuing patients a sudden ticket to the world of otherness. As the chemotherapy took effect, and I Iost my hair, I looked different, I felt different and I even sounded different, as I dragged the beeping monitor with me everywhere I went. For a while I referred to it as “my little friend,” because he never left my side.

The escape fantasies began soon after. When I lost enough weight that I could slip off my electronic hospital bracelet, Lake Washington taunted me from my window. I plotted my escape and dreamed about stepping outside and standing in the rain — even if just for a minute. Fresh air is an amusement ride in the imagination of someone who has been in the hospital for an extended stay.

One day, as I was being wheeled out of the oncology ward for an emergency CT scan, I asked the man pushing my bed what would happen if I tried to escape from the hospital. He laughed but then gave me a serious look and said: “You’ll be in big trouble. Your bracelet will set off an alarm, and the guards will have to come looking for you.”

Finally, on a day when I was feeling relatively stable, I attempted to go through with my plan. I hid my electronic bracelet under my pillow and told the nurse I was going for a short walk. I made it as far as the cafeteria on the ground floor. Then I froze. It was lunchtime, and people swarmed around me, brushing and bumping me. My anxiety mounted as I thought of all the germs in the air. I was having trouble breathing. What if I fell? What if I fainted? Within a few minutes I had returned to my room. Beep, beep. My little friend chirped. Strangely, I felt safe again.

To a cancer patient, the lexicon of the prisoner seems to scream out from everywhere. Your movement is monitored. Decisions as basic as what and when to eat require preapproval from a higher order. Not to mention that chemotherapy feels like a semilethal punishment. The medical staff plays the judge. At any moment, your doctor can issue a sentence: probation, house arrest, extended time in “jail” and, for some, even death row. I’ve never had to appear in court, but I imagine the adrenaline pumps the way it does before a doctor reads your biopsy results.

In retrospect, inventing the term “incanceration” to describe my new diagnosis reflected just how confused, scared and isolated I felt. It’s not that the hospital and my doctors were bad. Far from it. I knew they were the very best, and I felt a deep sense of respect and appreciation for them. But on an irrational level, I also felt wronged by those whom I saw as having “poisoned” me (medical workers who administered the chemotherapy) and by those who encouraged me (family and friends) to think positively. Finding the silver lining sometimes felt like part of the punishment.

I remember asking my favorite nurse, “Why would you ever want to work in an oncology ward?” My question was part curiosity, part self-pity. At that moment, it seemed inconceivable to me that someone would elect to be here.

My nurse told me that she once worked in the spinal cord injury unit, but that after a few months, she couldn’t handle the emotional toll it took on her. She transferred to oncology. “You mean there’s a place worse than here?” I asked. She described the patients who come in (often around my age) and wake up in a hospital bed only to discover that they are paralyzed from the neck down.

I felt ashamed that I had forgotten that I wasn’t the only one whose life had been interrupted by misfortune. I remembered how lucky I was that a cure was even an option for me. That day, as I dragged myself out of bed to go for a walk, I luxuriated in the movement of my legs and the in and out of my breath.

Could I begin to see the hospital not as a prison, but instead as a place of healing that was at times punishing? Could I learn to view my doctors not as judges but as gatekeepers to a long and complex healing process? This much I knew: I was lucky to have my family, friends and a dedicated medical team in my corner.

Still, every time I think I have come to peace with my reality, a new bump in my medical journey can quickly undo any fledgling resolve. But instead of listing all the ways in which having cancer has obstructed my freedom, I am challenging myself to think of cancer as my guru. To remind myself of all I have learned this past year. It’s hard, but I’m trying.

Wait indoors

Slept to waste the time

Until I hear the sound

Of your footsteps climbing

Up the porch as it rains

Trembling voices propogate these rooms

I keep my eyes closed and listen to the trains

Pull the sound

What lingers through this space that fills this house around.

Was I alone in thinking something good?

Water stains

On the pillow where I lay my head

Do they say that I was sleeping

When away do I

Wait shadows climb window fading days

As I trace the light that flickers through the room

Pull the sound

What lingers through this space that fills this house around.

Was I alone in thinking something good?

The grass is screaming long

Midnight cars roll past

I've been chasing your room

While the summer lasts

So count it on your fingers if we got it wrong 

It's because the days have no numbers

If we leave tonight then we leave it all behind

Drinking alphabetically because the beauty's gone all sore

Honey dripping pale of skin while there's bodies underneath

the floor

So count it on your fingers

If we got it wrong it's cause the days have no numbers

If we leave tonight

Then we leave it all behind

Oh why is your hate so addicting 

I wonder where you've been

I don't see you often

I try to feel something for you

But that's all that I can do

Give my shadow to you

Do you ever see me at night 

And does it please you at all 

When you head up the wall

I'd go with you if you asked me to

But we wouldn't get too far

Two strangers in the dark

On the way towards your descent 

I could count every flower on the hill

I couldn't drown out your consent

There is nothing left for me to forgive again

And It's cold in your bed 

And those flowers have long been dead

If you wait you can see there's a place where I use to be

You want to make me spin?

You want to hold me?

Counting days till you come in

I haven't lost you 

I've just misplaced you

However be? I could not tell

The window opened no explanation

You're right in the sun

And the dreaming has come undone

If you wait you can see

there's no reason to disagree

You want to make me spin?

You want to hold me?

Morning light shines in your bedroom

It calls me in to your arms

For a single moment I have peace

The quiet hours passing by

It's not what I want; it's what I need

The quiet hours fall to pieces

Heaven isn't where you thought

The dream is dying, fading fast now

The quiet hours gone at last

It's not what I want; it's what I need

You're in my head at times? 

I couldn't end the way you're my burning

And I can feel your heart

I've  been gone?

I can release these signs 

You won't  hear 

You won't know

You won't ever know

Your heart

It was falling from the start

Though I try

I was always dead inside

The midnight song 

Sing you to the moon

I am your quiet night

You were gone too soon

And I can feel your heart 

I've  been gone?

I can release these signs

You won't hear

You won't know

In a strange kind of way, lifeless landscapes have so much to say

And it's hard to sleep tonight, in my head buildings are collapsing

I've never seen the desert before, to be close to nothing

Shapeless and gone...

So good to know that you are out there, so good to know that you still care

And the light seems more bright, even the air feels like the first time

And I feel shapeless and gone... so close to nothing.

Shapeless and gone...

I've never seen the desert before, to be so close to nothing.

That's all I need 

To sit in the sun

There's something here 

That makes me run

It's all in my head... 

Or is it you instead?

We are not enemies 

But we don't have to get along

And I don't wanna listen 

Unless you speak from your heart 

...unless you speak from your heart

You can be weak 

Without provoking strength

And I don't want to be here 

When you will face yourself

We are not enemies 

But we don't have to get along

And I don't wanna listen 

Unless you speak from your heart

...unless you speak from your heart

Tell me if it's true?

Just tell me if it's true

This is the end of silence

Where everything begins

Tell me if it's true

Just tell me if it's true

One day we'll disappear

With all the pain and grace we have known

Fever in my eyes

There's fever in my eyes

What the ocean said to you

Something clever or something true

Or something that looks like you

The end of silence

Lately

I'm not sleeping

I'm not breathing

Without machine

Lately

My heart's been breaking

My heart's been breaking

Through the seam

Shut me off

Shut me up

Shut me off

Shut me up

Time taunts me. Says, ''You're getting older. Are you growing colder, hmm?" And time and time again, I doubt who I am. What a tragic ending. Don't let go of my hand. And today, i'll give you all my time. And you can count on me, for you look so tired. And today, it's time for you to rest. I know you've done your best, so rest your aching mind.

Oh It's a game, hold tight

Can you shut your eyes?

Shut out the light

Death is so bright

Stop to complain and turn your head around

Restrain yourself and then you die

Did you tell your friends how much you miss them all

And how great is to live in a brand new world

And it's hard tonight for me to talk

Anyway it's too late, the party is over and I really need to go

Would you do something for me, do something for me

Would you put me to sleep, put me to sleep?

This headache I have is writing a book all over my brain

I didnt' find my shoes and the night is about to end

And I think I've lost my voice again

I need you now, I hope you understand

Would you do something for me, do something for me

Would you put me to sleep, put me to sleep?

Take me away, directionless

It doesn't have to make any sense

Use what you have, I'll follow you

Use what you have, don't you worry now

Drifting in and out...

Choose what to be, take a side

What if I don't want to step out in the light

Give it to others, just let it go now

Give it to others, don't you worry now

Drifting in and out...

I've waited a hundred years

But I'd wait a million more for you

Nothing prepared me for the privilege of being yours

If I had only felt the warmth within your touch

If I had only seen how you smile when you blush

Or how you curl your lip when you concentrate enough

I would have known what I was living for

What I've been living for

Your love is my turning page

Only the sweetest words remain

Every kiss is a cursive line

Every touch is a redefining phrase

I surrender who I've been for who you are

Nothing makes me stronger than your fragile heart

If I had only felt how it feels to be yours

I would have known what I've been living for all along

What I've been living for

We're tethered to the story we must tell

When I saw you well I knew we'd tell it well

With the whisper we will tame the vicious scenes

Like a feather bringing kingdoms to their knees

Nothing can heal us from losing a loved one. Not truth, not sincerity, not strength, not kindness. All that we can, is to live while hugging this tragedy and learn that, no other new loss will be any less painful 

It's not enough to live my past, through photographs

Uncovered

One falling breath i've held in time, encased in light

Now fading

I can't feel myself in these scenes

An absence leaves this incomplete

Kept myself alive, but it's unclear, what holds me here

Unaging

Echoes of life embrace these walls, 'til they dissolve

Cascading

I've been searching for something in these frames

By face or name, those eyes...

Where's the fight i am not feeling?

When life takes away each fleeting part of what we are inside.

There's a ghost in my living room

In silent sets, moving through

The attic in chemicals

Dissolve in two

There's a flaw in my chemistry

The chill swells and follows me

In choirs of cold machines

And their smoking skin

These bones reside within

A crack spool of medicine

The distant hum that blooms as we run

No way to displace

In broken light

The cold grey night

A ghost still around me

Leave another ghost behind

Wild heart surrender to me

What does it take to be like you?

Golden haze hold out for days

Haven't seen you 

Haven't seen anyone

Beautiful one

I wanna know what you are

Beautiful one

I wanna know where you are

There's nobody out there, it's just the noise of the wind

There's nobody out there and nobody getting in

Hope that happiness finds

It's way to your little house

While you were sleeping I

I played a ghost in a sheet

When our frames collide

There's nothing left to be

There's nobody out there, the rain is just starting to fall

You get some rest now you'll worry yourself thin

Hope that happiness finds

It's way to your little house

While you were sleeping I

I played a ghost in a sheet

When our frames collide

There's nothing left to be

The skeletal wings of birds

I'll take the stairs

The ghosts of tiny animals

With the tiniest of feet

The forecast is going down

A storm

Storm

You wanna know me 

What's to know

Do I amuse you

When the night is slow

Do your eyelids ever close

Caught spirits in your waking woes?

I know where to find you

Know where you go

And I just want to let you know

You can have me

You can have me all

And you're twisted 

What can I say 

Your days are empty 

And my tongues decayed

I know where to find you

Know where you go

And I just want to let you know

You can have me

You can have me all

Why the struggle, why the strain?

Why make trouble? Why make scenes?

Why go against the grain?

Why swim upstream?

It ain’t

It ain’t

It ain’t no use

You’re bound

You’re bound

You’re bound to lose

What’s done

What’s done

What’s done is done

That’s the way the river runs

So why get wet? Why break a sweat?

Why waste your precious breath?

Why beat your handsome brow?

Nothing changes

Nothing changes

Nothing changes anyhow

Doubt comes in

And strips the paint

Doubt comes in

And turns the wine

Doubt comes in and leaves a trace

Of vinegar and turpentine

Where are you? Where are you now?

Doubt comes in

And kills the lights

Doubt comes in

And chills the air

Doubt comes in and all falls silent

It’s as though you aren’t there

Where are you? Where are you now?

You’re shivering

Is it cold or fear?

Just keep singing

The coldest night

Of the coldest year

Comes right before the spring

Doubt comes in

With tricky fingers

Doubt comes in

With fickle tongues

Doubt comes in and my heart falters

And forgets the songs it sung

Where are you? Where are you now?

Hold on

Hold on tight

It won’t be long

’Cause the darkest hour

Of the darkest night

Comes right before the dawn

When will we know it's enough?

Kept you here beneath my breath

Smooth the sheets upon the bed

Gathered slowly on the steps

Placed an heirloom to forget

When will we know it's enough?

It's enough

It's enough.

As I stared into your eyes,

A secret bell is ringing under the ocean,

Oh the ocean, is looking at me,

Have we ever met before?

As I struggle to forget what I came,

What I came here for,

I came here to go.

It was my heart I gave you

Ain't no easy thing for me to do

Been returned to me in pieces

Oh no honey it ain't no good no more

It's all broken up abused

Who'd want it now it's all been used

Sweet lord only knows

Well I ain't got no more love to give

Your love been like a rolling stone

Forever ain't a long time at all

Forever ain't a long time

When there ain't no remedy

This feeling ain't gonna be leaving me

So much remind me of you

I light my cigarette the way you do

Been bare foot in my kitchen

And you been in every one of my rooms

My pillow has captured all your dreams

And your nightmares I keep in my shoes

Well there ain't no love in this lonely place

I done wasted all my love on you

Well you know I seen the dark side

And you know I made the shadow my friend

You knew this when you met me

It intrigued you back then

But now you're afraid to be with me

With all you said and done

You said forever you would love me

Forever ain't a long time to come

My fingers have seen every inch of you

And the blood that you keep to yourself

I done tasted that there little evil

I been crawlin my way outta hell

Your thin line lip of deception

Been working over time

And there ain't no right combination

That's gonna get us outta this here trouble this time

Would seem to all be left up to chance

I'd see the fire in your head

And I knew the dance

It all seems like so many years ago

But I'm still burnt by the curse been cast

Was I a fool to try and hold onto you

Shoulda been strong enough to let you go

If I'd seen all the things that I do see now

Baby believe me I'd 've run from you

Well my love is all I got to give

Got to give to anyone

It's a choice you make and a risk you take

When you wanna believe in love

When you only wanna be loved

Well I ain't gonna choose love no more

I ain't gonna choose no love

If you only got that kind of conditional love

I ain't choosin love no more

Forever ain't a long time at all...

I could ask you "are you dead like me?"

Call me what you will, but call me again

It's true I don't talk too much

Because our lips won't last forever

And that's exactly why

I'd rather live in dreams and I'd rather die

Because our lips won't last forever

And that's exactly why

I'd rather live in dreams and I'd rather die

Pretty face could you make the jump with me?

I'm dying just to let things go

Do you remember the lightening storm?

It was the first time that I really felt you

Because our lips won't last forever

And that's exactly why

I'd rather live in dreams and I'd rather die

Because our lips won't last forever

And that's exactly why

I'd rather live in dreams and I'd rather die

We've got eyes on the back of our heads

As the mountains melts together with the sunrise

You tell me about the time

When you turned yourself into a stranger,

And all the chemicals were dancing in your blood

When you dear suddenly felt seasick.

Because you thought all lies were revealed.

And the thing that I felt when you told me

About that house with that singing weathervane

Oh, determined heart please translate it!

These cryptic messages hidden in between,

Her moon and her sky and her oceans

Cause I don't seem to understand them anymore.

Now the bachelor seems to wind up in the corner.

And his army of lovers they have left.

And the breakman is obviously sleeping.

Cause this train is going faster than light.

I still dream

Wake up cryin'.

You're making rain,

And you're just in reach,

When you and sleep escape me.

You're like my yo-yo

That glowed in the dark.

What made it special

Made it dangerous,

So I bury it

And forget.

But every time it rains,

You're here in my head,

Like the sun coming out

Ooh, I just know that something good is gonna happen.

And I don't know when,

But just saying it could even make it happen.

On top of the world,

Looking over the edge,

You could see them coming.

You looked too small

In their big, black car,

To be a threat to the men in power.

I hid my yo-yo

In the garden.

I can't hide you

Oh, God,

I won't forget.

'Cause every time it rains,

You're here in my head,

Like the sun coming out--

Ooh, I just know that something good is gonna happen.

And I don't know when,

But just saying it could even make it happen.

And every time it rains

You're here in my head

Like the sun coming out.

Ooh, I just know that something good is gonna happen.

And I don't know when,

But just saying it could even make it happen.

Ooo-ohh, just saying it could even make it happen.

Falling through your song

My desires come undone

Though I looked for you all night

The words were never heard.

When I dreamt of you so sweet

In the garden of my touch

Drowning into sheets

Imaginary love.

In the world of social media, we are our own self-portraitists. Our digital identity is doctored to show the best version of our lives. (Maybe a more apt name for Facebook would have been “Best Face”.) It’s not a new observation to point out the disparities between our online identities and our real selves, but for me, as a cancer patient, that gap has never felt larger.

If you had visited my Facebook profile last June, you would have found pictures of a smiling 21-year-old. This was a happy, successful, carefree person. On Facebook, aren’t we all?

What most of my Facebook friends couldn’t have known was that this young man no longer existed. In the “real world,” I was in the oncology unit of a Sydney hospital, undergoing my first round of intensive radiotherapy. My hair was falling out in clumps, and it had been weeks since I had eaten solid food or taken a walk outside. Even my name had been changed, inadvertently — my hospital door tag read "Wilson".

When I learned I had an aggressive form of leukemia 12 months ago, a lot of things were running through my head, but updating my Facebook profile was not high on the list. After all, in the land of Facebook, I didn’t have cancer yet. Friends were still posting on my wall. Online, I was still a healthy university student, who was “in a relationship”.

But every time I logged onto my Facebook account, my profile felt more like a stranger’s than my own. In the midst of a medical crisis, I found myself preoccupied by a social media question. To share or not to share? I wondered to what extent my digital life ought to reflect my real one.

As long as illness has been around, people have faced the challenge of communicating what it feels like to be sick. But social platforms like Facebook and Twitter make it easier to share than ever before. Even so, I found myself hesitating to answer the Facebook prompt that asks, “What’s on your mind?”

My first social media decision following my diagnosis was to cut and run. I deactivated my Facebook account. Looking at pictures of my healthy precancer self stirred uncomfortable emotions; it was a reminder of a life past, of all that had been taken from me.

I wanted to withdraw from the world until I got better. Then I would reactivate my account and move on with my life as though nothing had ever happened.

To share my cancer with my Facebook “friends” felt way too public and maybe even trivialising. After all, cancer is not something you “like” on Facebook. But in an age where our social media presence is so inextricably linked to our identity — on and off the computer — not updating my profile to reflect my new reality felt inauthentic, even dishonest.

Five weeks into my first hospitalisation, my doctors informed me that my disease hadn’t responded to the treatment. Exhausted and depleted, I couldn’t imagine starting the process over in a few weeks. It was the first time that it struck me that I might not get better for a long time, or at all. My cancer wasn’t seasonal, or something I could temporarily hide. Illness was going to be a part of my life. For now.

After the hospital, I went home to my bedroom. I had completed an almost total retreat from the world. I found it hard to even pick up phone calls from my closest friends. What did I possibly have to report? My days were a dreadful routine of meals, medicine and the view of the ceiling from my bed.

But my self-imposed exile weighed on me. As hard as it was to relate to my peers — 20-somethings starting new jobs and new adventures — I missed my friends. And my disengagement had started to worry them. In this hyperconnected age, when we’re all keeping tabs on one another through our online avatars, not updating a status message can be its own kind of update.

I began to reconsider my Facebook silence. For several months now, I’ve been posting updates — about chemotherapy, baldness, nausea and the like. There’s a liberation in the type of public honesty you can engage in on social media. And in some ways, venturing back into social media has been better therapy than any prescription.

For the first time since I’ve been sick, I feel connected to a responsive community I hadn’t previously known existed. I like hearing from other cancer patients, and their caregivers, who share with me their own stories and wisdom. And for my friends, this has been an opportunity to witness and engage in an ongoing conversation about what it means to have cancer in your 20s.

So much has changed in my life since my cancer diagnosis. But now, when I go to my Facebook profile, I see myself again.