Rare, rare bird

Abide with me.

Don't give yourself

Too easily.

Stand your ground

For all to see.

Rare, rare bird

Abide with me.

Beautiful lamb

Don't turn away.

Just say the word

Without delay.

And shine your light

For all to see.

A rare, rare bird

You are to me.

Rare, rare bird

Abide with me.

Beautiful lamb

Don't walk away.

Just say the word

Without delay.

Take my hand

'Cause I'm lost you see.

A rare, rare bird

You are to me.

Rare, rare bird

Abide with me.

Guilt, like cancer, is a greedy guest feasting on its host. It is nondiscriminatory. We have all felt it, wondered what it was doing there, willed it to go away.

I’m aware that feeling guilty about having cancer is more than a little irrational. But when it comes to cancer, guilt is a mercurial, equal-opportunity burden that affects both patients and caretakers.

In the outpouring of love I’ve gotten since I began writing about my disease, guilt has never been too far away. Intermixed in the spectacular and candid messages of support, I’ve also received dozens of apologies from friends, classmates, and acquaintances who feel guilty for not being in touch or not realising what I have been going through. Some people feel guilty just for being healthy when I am sick. The topic of guilt came up during a support group meeting for young adults with cancer. I was comforted to hear that everyone in the room felt some form of guilt related to their cancer. I certainly had. From the day I received my diagnosis, guilt has been a steady and quiet companion on my journey.

Sometimes, guilt is a self-inflicted wound. Although I know I shouldn’t, I feel guilty about being a burden on others, taking up too much “space” with my problems and causing pain to those I love. How could I not? I trust that others with cancer know what I mean.

Not long after my diagnosis, I wrote in my notes about my own feelings of guilt.

I feel guilty when I start feeling sick or get a fever. I want to apologise, for I know I will soon make the life of my loved ones hell. My mother will have to drive for hours in the middle of the night to take me to the hospital. Family will have to take sick days from work. After long days at the office, Frey will spend night after night sleeping between the sheets beside me. My father will “hold down the fort” at home (this translates to lonely nights spent worrying by himself and feeling very far away from my hospital). My brother, typical of most 20-something “bros,” doesn’t talk much about his feelings. He has trouble sleeping. Often, when I wake up from nightmares, I hear him tossing and turning in his room next door.

At times, I have blamed myself for lifestyle choices that might have led to my cancer. During my many travels, might I have been exposed to some kind of environmental toxin? If it weren’t for all those late nights during uni spent studying and going to parties, would I still have fallen sick? Did my vegetarian phase at age 8 strip me of important nutrients and compromise my immune system? Too much junk food? Were my jeans too tight?

The belief that cancer happens for a reason can be an attractive line of thinking — where there’s an effect, there must be a cause. This is what a logical mind tells us, but it’s usually untrue. Even when a patient is found to have lung cancer after decades of smoking, is cancer still the patient’s “fault”? Even if there is a correlation to the choices a person makes in life, cancer is always deeply unfair.

Guilt takes other forms for patients, like feeling shame for the envy we feel about those who are in good health; feeling guilty about the disproportionate amount of attention we receive, and even guilt about surviving cancer when so many others have not.

I’ve learned that guilt is made less powerful when you confront it — writing about it, talking about it, bringing my fears and thoughts to the fore, out into the open. For me, the cure for guilt, to the extent that there is one, has been sunlight.

People are always giving advice to cancer patients. Whether it is nutritional advice or doctor recommendations or tips on how to quell the nausea that accompanies chemotherapy or radiotherapy, just as soon as people hear you are sick they usually want to find a way to help. Most of the advice is welcome and encouraging, though in some cases you’re just not in the mood to hear what someone has learned because you’re too busy treading water.

That’s one reason I hesitate to lend any advice at all. I’m only 22. I’ve had cancer for 27 months now. It feels like forever to me, but it’s a short period of time compared with people I know who are going on 5 or 7 or 10 years living with cancer. But I’ve received some heartfelt advice and solidarity along the way from fellow cancer patients, doctors, friends – even from strangers – and it has meant a lot to me. Now I want to share what I’ve learned along the way.

Here are six strategies that have helped me to cope with cancer.

Find Your Community

At first, I bristled at the idea of a cancer community. It was enough to have cancer; did I also have to share my experience with a group of strangers? It felt like extra homework. I hesitated for several months before going to my first cancer support group meeting. It was overwhelming to imagine hearing a dozen other stories as bad as, or worse than, mine.

But something surprising happened. I started going to a young adult cancer support group. For the first time since my diagnosis, I became aware of the fact that I was not alone in my fears and anxieties. Instead of feeling isolated in my experience with cancer, I began to realise there was an amazing community of people out there who were going through the same thing and could help me make sense of what was happening because they had been there themselves. Rather than feeling overwhelmed by the stories of the other cancer patients, I felt empowered and inspired by their strength and bravery.

I’ve also found a surprisingly vibrant cancer network in virtual space — on Twitter, Facebook and elsewhere. But in my experience, nothing can replace face-to-face interaction – even if no words are exchanged – with someone else who understands what you’re going through. Two of my closest friends are people around my age whom I met at the hospital. We don’t talk about cancer all the time. But knowing we can go there if we need to is invaluable.

Eliminate Clutter

Cancer feels messy inside and out, whether it’s the disease itself, invading my body, or the material clutter that comes with disease: heaps of laundry piling up, stacks of unopened bills, prescription medication crowding the bedside table, unanswered phone calls and e-mails, and more. I’ve found it helpful to try to control the chaos in small ways. 

I’ve gotten rid of unnecessary clutter in my room. I do regular mini-spring cleanings. What do I need? What can I put away in storage? It makes me feel better, even when cleaning tires me out. The way my surroundings look and feel has a big effect on my mind-set, especially when I am spending a lot of time resting in bed. I like to feel light.

Prioritise Your Relationships

Cancer also forced me to declutter my social life. When I found out I had cancer, I was a still at university. I had dozens of friends and acquaintances who formed a frenzied around-the-clock social network, talking and texting all day, every day. I was tied to my phone like any other 20-year-old.

After my diagnosis, I tried to keep up my old ways, but there was less time. And I had much less energy. At first I felt guilty about not being able to maintain the same frequency of communication with my friends. But having cancer forced me to adopt a simpler schedule.

Be Kind to Yourself

Instead of feeling mad at my body for failing me, I’m trying to give myself permission to take it easy. Easier said than done — I almost didn’t include this point because I’m still struggling with being kind to myself. I can’t help but feel frustrated with myself when my body is overly tired, or when my mind is fuzzy. (They call it “chemo brain.”) Sometimes I beat myself up over sleeping late into the afternoon. Or when I can’t eat more than a few bites of any meal. Or when my muscles are too weak to pick up the kettle on the counter. It’s a daily struggle not to view these setbacks as failures or weakness. But I’m trying not to punish myself for the things I can’t change. In the time we should be the easiest on ourselves, I’ve found that we can often be the most judgmental and harsh.

Do Something for Someone Else

The experience of being sick for an extended time means that you become the center of attention. Someone has to be taking care of you, people are always worried about you, and as the patient you spend a lot of time focusing on, well, you. That’s a lot of yous. Cancer confers a certain kind of myopia. You’re always thinking about your own health above all else. That doesn’t leave a lot of time to think about other people. For the first time since my diagnosis, I’ve begun to send letters and care packages to other cancer patients and friends of mine going through a difficult time. By reaching out, I’m paying it forward for all the help and care I have received. I have found that small acts of gratitude or connectedness to other people who are suffering rescues me from my own self-pity and makes me feel like I’m capable of helping, and not just of being helped.

Set Goals Unrelated to Cancer

From the earliest days of my diagnosis, one of the casualties of cancer was the feeling that I had to shelve my dreams and goals. These paused plans — dreams, interrupted — weighed on me every day. I was constantly thinking of everything I could be doing – everything but lying in a hospital bed or sitting in an infusion suite. Right before I got sick, I was working on my dreams. But with my diagnosis came radio and new plans. It was devastating to miss this opportunity.

But I decided that I didn’t want to let cancer put my life entirely on hold. It had always been my goal to be a writer of some kind. So now I’m going after that goal again. This time, however, I’m trying to write about a different kind of landscape.

As a cancer patient, I think a lot about how we talk about illness — or more often, how we talk around it. Even the word “cancer” is ugly, scary, burdensome — a roadblock for a conversation before it even starts. Who wants to go there? Much of the time, I’d rather not bring it up if I don’t have to — and I’m the one with the disease!

When the topic is a life-threatening disease, the instinct — for both the patient and non-patient — is often to freeze, and try to come up with a positive spin.

“I’m trying to think positive!” I’ll tell a friend, after listing the symptoms I’m having.

“I’m staying strong!” I’ll write in a text message.

“It’s tough, but I can do this,” I’ll say when I’m having an especially hard day.

No one coached me to say these phrases. So where did they come from? In the middle of chemotherapy, when I’m feeling my worst, why do I feel the need to inject these little nuggets of positivity into conversation?

Our culture is steeped in positive thinking — from the self-help mega-industry to uni courses in positive psychology to the enduring pull of our dreams. There is no “dislike” button on Facebook. Nobody wants to be a downer.

But I don’t think it’s all cultural. When it comes to disease, I think the “positivity spin zone” is a force of nature. First, we want to protect the people we love. Cancer makes people think about mortality. It scares your friends and family. And many cancer patients, consciously or otherwise, try to buffer bad news with a dose of positivity. Putting a positive twist on how things are going is a way to convey hope. We want to be strong, to put on a brave face for our loved ones. Positivity is a signal that everything is going to be all right, even if no one knows that for sure.

The second reason, I’ve come to realise, is to protect ourselves. There’s no denying that cancer is a gloomy subject. We repeat positive phrases to ourselves as a sort of mantra. And while positive thinking alone can’t cure cancer, attitude is critical to getting through the process and growing as a person. We voice positivity as a show of strength in the face of the unknown. It’s a daily note to self: I’m going to beat this.

But while I have learned a lot since my diagnosis — and I am trying to be hopeful for the future — living with cancer is also just really, really hard. We don’t always talk about those times. We self-censor many parts of the journey. And when we do speak about it, we often find ourselves framing any negative thoughts in a more positive way.

At what point is positivity a form of denial? Does positivity at all costs have a cost? I’m not a negative person, and I’m certainly not trying to set up a school for negative thinking, but today I’m giving myself permission to step out of the spin zone of positivity — to stare down fear, anxiety and dread without the guilt that I might be giving up or not fighting hard enough.

This reality isn’t positive or negative. It’s just another day in my journey as a cancer patient.

We are forced to survive reality by harnessing our thoughts, feelings and emotions as they quietly travel along on their own trajectories. We think our realities are different to the world surrounding us and thus it becomes a struggle of who we are; until; we find someone who has a mutual understanding that our personal reality is okay and they choose to spend their reality in ours. 

We call this a love story.