How to talk to and support someone with cancer

Me at sixteen.

I was fifteen, nearly sixteen, when I found out I had cancer.

The doctor came in and told my mother I had Hodgkin’s disease. He didn’t say cancer, but she knew what it was. I didn’t. She began to cry and then he, the nurse, and my mother all left the room.  I stared at myself in the mirror, smoothed my long hair and focused on the Chinese dragon on my shirt.

I sat there alone for too long, wondering what the hell was wrong with me.

family cancer

Pop pop and I before we had very interesting conversations.

An old friend of mine messaged me today and told me his mother has cancer. He asked me questions about what it was like when I had cancer.

I wrote him back and decided to post about this. Everybody struggles with what to do when a friend or loved one has cancer.

When my Pop Pop got cancer (which ended up being terminal), we spoke openly about it. I’m grateful we talked like this before he died. I think I’m the only person in my family who could talk about any of it with him.

This post isn’t about terminal or advanced cases of cancer. I’m certain they are different. But I know my grandfather appreciated my phone calls while he was sick. I didn’t back away or let my own fear of death keep me from talking with him.

I know this is uncomfortable to even think about, but it’s much more uncomfortable for the person with the cancer. So here’s how it was for me, along with some tips.

When you first find out you have cancer…

Me at sixteen.

Me at sixteen.

It’s terrifying. My mom was terrified and I knew it, but my dad responded by printing out everything the internet had to offer on Hodgkin’s disease.

My dad’s knowledge made me feel safe and his response is exactly how I now respond to challenges. I research everything and try to empower myself to make good decisions.

The things they do to diagnose you suck. They took bone marrow from my hips. They used a numbing agent, but it still hurt and I could feel the marrow being sucked out. I cracked some joke about it and they thought my reaction was inappropriate, so they recommended I be sent to the psychologist at the cancer center.

I found a way to cope through journaling. Half of the pages in my new journal were black and half were white. On the white pages, I wrote about high school and how much I wanted to experience my first kiss. On the black pages, I used gel pens to write about my cancer. It helped to separate it like that, though I was well-aware of how one affected the other. This was when I first started writing for myself a lot. I never stopped.

Tips:

  • If the cancer patient wants your help, help them to feel empowered and less like a victim. Help them find information or find ways to stay positive and cope.
  • But understand that they will feel anger and fear, too. Most of the time, you don’t need to do anything except listen and be there for them.
  • If the cancer patient wants to crack jokes to deal with the pain, it’s fine. Humor is a great coping mechanism.
  • If it’s not terminal cancer, please don’t give them books about dealing with impending death. Don’t tell them stories about people you know who died of cancer. My psychologist gave me one of those death-by-cancer prep books and I refused to see her again.

How Chemotherapy Feels

Chemo sucks. It feels like you got hit by a train. Well, maybe not that bad, but all kinds of body parts ache– body parts you didn’t know you had or didn’t know could ache.

Maybe I felt my organs dying. I don’t know. But it hurt. A lot. The puking was worse right after a treatment. I still went to school and had good days in between treatments, but I did miss a lot of school.

I was lucky. I had early-stage cancer and I only needed four months of chemo. I really appreciated that my dad was strong enough to sit next to me and hold my hand while I got treatments. My mom couldn’t really handle it. I don’t know how the nurses handled treating me; I was always the youngest patient in the waiting room.

I still want to vomit every time I smell a place that smells like that oncology building did. Expect a cancer survivor to have some PTSD-like reactions to certain smells and experiences.

The Hair Loss

I remember the exact moment I realized I needed to shave my head.  I was getting ready for school. I pulled the brush through my hair, saw the clumps coming out, and noticed how wide my part had become.

I cried and told my mom I had to shave it off. I called a friend’s mom who did hair and she drove to my house to shave my head (she didn’t live nearby). I still appreciate that she did that for me.

Finally shaving my head was such a relief. My status was plain for the world to see. I remember everyone trying to convince me to wear a wig. They said I could make a wig with my own hair, but I turned them down.

I determined that I’d be wearing a wig just to make everyone else around me comfortable. It would have been painful to hide my truth so others didn’t have to deal with it. And that’s never been me.

Tips:

  • If you can, be a rock for the cancer patient. Acknowledge the chemotherapy and face it with them. Don’t act like it isn’t happening. Don’t fall apart. It may hurt to see them in pain, but try to remember that you’re not the one getting all the needles.
  • Help them be comfortable, but don’t coddle them and tell them they are too sick to do things. I continued to run track until I shaved my head and started to feel too sick.
  • Let the person decide how they want to present themselves to the world while they’re sick.

Your Discomfort

Me with two of the friends who stuck by me (post cake fight here...)

Me with two of the friends who stuck by me (post cake fight here…)

When you get cancer, it’s the biggest betrayal you can imagine. Your own body turns against you and you feel like you can’t ever really trust it again.

And when you get cancer, you learn a lot about your friends and family.

Some of my family and friends backed away, unable to deal with my illness. Other friends and family members stepped up and were there for me.

Suck it up and be there for the person you care about. You aren’t the one getting the drugs. You can be strong for someone else.

Don’t act weird about the cancer. Ask how the person feels, let them know you are there to talk if they want to talk.

Invite them to do things. Don’t assume they are too sick. Don’t fail to invite them because you’ll feel awkward hanging out with your sickly-looking bald friend. 😉

Do cut down a bit on the shallow bullshit. I had a hard time watching other kids smoke cigarettes and bitch about stupid things, or fuss over bad hair days in the bathroom at school.  One group was asking for cancer and the others didn’t appreciate that they had hair. I mean, I was standing right next to them. They could have compared our circumstances.

Tips:

  • Plenty of people with cancer decide “I’m gonna kick this thing’s ass”,  so it’s good if you don’t treat them like victims.
  • At the same time, try to be a little empathetic. Use their illness to realign your own priorities. You can both learn from this.
  • Invite them places or talk about what you’ll do when they get better. Be positive about it.

Staying Positive:

Yeah. Pretty much like this cover.

Yeah. Pretty much like this cover.

I tried to stay positive. I used to sit on my bed and imagine the good cells of my body attacking little evil green cartoon cancer cells.

I made these positive quote posters and hung them on the wall across from my bed. I cut out pictures of the short haircuts I would have when my hair grew back.

One of the quotes was “The tide always comes back.” I needed to remind myself that while things sucked now, the good times would cycle around again and things would get better.

I remember how excited I was when my dad finally got me Christina Aguilera’s Christmas CD. I wanted to sing it, learn all the words. But I puked while listening to it for the first time.

I dropped the insert with the lyrics right into the bowl of lime-green vomit. I appreciated the irony of that moment, the incongruity of me still dreaming my dreams– pretending I could be a popstar, while in reality, I was bald and staring down at lyrics floating in puke.  I smiled ruefully, pulled out the insert, and tried to wash it off. Didn’t work.

But I’m glad I kept dreaming and I’m glad I stayed positive and tried not to think of myself as a victim. It got me through and made me stronger.

Some cancer patients don’t want to hear “Be strong” and “Stay positive”, but that mentality worked for me.

So if someone you care about has cancer:

Let the person with cancer feel their feelings. All feelings are valid.

But for your part, feel your feelings and your fear, yes, but focus on getting through each day. You can be positive, face it head-on, offer to be there for the patient, and be honest with yourself. Don’t pull away because seeing illness is uncomfortable and brings up your own fear of death. We all have those fears and this is a chance to stand up to them, help someone else, and realign your own priorities in life.

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