Childhood cancer

A Day on the Chemo Ward.

Many people have asked me what it’s like in the pediatric oncology ward at the hospital, so I thought I would tell a story about a typical day spent there.

Right, who am I kidding? Not one person has asked me what it’s like in the pediatric oncology ward, who in their right mind would want to chat about that? But I got your attention, right?

Before you run away in fear, let me start by saying, it’s not as bad as you think. Really. I know that before I entered this cancer world I would have imagined any hospital scene to be a cross between M.A.S.H. and One Flew Over the Cuckoo’s Nest. I would have imagined misery and madness, pain and suffering, trauma, doctors being paged and running down the hall to some emergency, people yelling “intubate!” (that’s from Scrubs) and of course, Dr. House glaring at me as I plead with him to not do some kind of weird alternate last chance treatment to save my life.

It’s not like that. In fact, just the opposite. It reminds me of a story I read about the US Airlines flight 1549, the famous airbus flight which successfully ditched into the Hudson River in January 2009, with all people on board being saved. In a movie, when an aircraft has an emergency, there is mass general panic, people are screaming and crying and it is complete chaos. So, since most of us have not had this experience (and I hope none of you do, especially on my watch) we assume this to be likely true. But the reality is quite different, as described in the recounting of Flight 1549.

People heard the loud bangs and saw the engines flame out, and within 6 minutes after take-off the aircraft was in the river. No one panicked. The crew did their job, amazingly well. The passengers stayed calm, followed instructions, helped each other, and quietly exited the plane, to be rescued on the wings by passing ferries.

The illusion of panic and terror is only that, an illusion. The cancer ward is not a terrifying, horrible place either. (Although I think I might have encountered Nurse Ratchet once). People are laughing, chatting, living their lives. Yes, some are ending their lives. Well, we all are somewhere on that road, aren’t we?

I deal with anxiety by writing. So when we have to spend long days at the hospital, I often write, usually just in my mind by people watching and imagining the stories I would tell about them, then writing it out later at home when the house is quiet. So for the next few blogs I will summarize these stories into one. To protect the anonymity of the other children, parents, doctors and nurses, I have of course changed names as well as some details.

Time passes at a different rate when you’re in the hospital. There are moments when time rushes past you and you wish you could make it stop so you can catch your breath. But usually the time ticks forward at a slower pace than the outside world, and you can drown in the boredom.

Today we are at the hospital in the pediatric oncology outpatient department. We spend the whole day here on the “big chemo” days. Because we are here so long they assign a bed to us, in a ward with four other beds and a small playroom. Other kids and parents come and go throughout the day for their treatment. I sit next to Elliot’s bed and watch them come and go, sometimes hoping for a conversation. Chemo treatment, as it turns out, is not only toxic and nauseating, it’s also quite boring. Anxiety and exhaustion mixed with boredom is an interesting combination… I say interesting with a bit of sarcasm of course, it’s interesting the way vodka, gasoline and old milk mixed together would make for an interesting cocktail.

One woman just arrived with her daughter, who looks around age 3. The daughter still has a head full of hair… Am I jealous? Yes. When do I get my kid back? I know he’s right there in the bed next to my chair… But he does look different with no hair or eyebrows, and although it’s the least of our worries, it is the most visual reminder.

The mother is rude. She is simply not following any of the standard politeness rituals and rules. Nothing major, she just isn’t playing the social etiquette game. She talks very patiently and calmly to her daughter while they get the girl settled into her bed. The nurse says she’ll be back in a while; the mom doesn’t answer. Then mom reads the girl a book, then plays a puzzle. I get up and walk by a couple times, pacing, make eye contact, smile. She looks away without so much as a smile. Rude.

There are two other moms in the room too, and of course my husband, who is sitting on another chair next to Elliot and staring at his mobile phone, tapping it and swiping it occasionally. The bed next to Elliot has a little girl with a pink flowery dress. She looks very young, almost babyish, until she smiles, then she looks devious, but in a cute way. Her hair is almost gone, just a few thin wisps. She is very tiny, but probably also about three years old. Her mom is hovering over her daughter, tucking the blanket around her legs each time the smiley girl kicks it off, which is roughly every 2 seconds. She sees the rude mom reading a book to her girl and gets one from the book case too. Everyone is reading to their child, except me. Then the family in the fourth bed leaves, and we are all a bit silently jealous because it means if they hurry they will probably get to have lunch at home. The hospital coffee shop here actually has some great sandwiches. Two types: salmon wrap and roast beef on a kaiser. That’s it. I was happy the first 20 times or so I ate one of them, for breakfast, lunch and supper… Elliot was diagnosed 8 months ago so I am slightly losing my mind nutritionally. I put honey and tabasco on the salmon once just to change it up.

Elliot is watching a movie on the ipad. The reason I am not reading a book to him like all the other moms is that I am tired and anxious and non competitive. He has another 4 hours of chemo to go, the bag of red stuff hanging on a hook behind him, draining quietly through the tube that snakes around the bed and under his shirt, into his body. I want him to just sit there and take it, I don’t want to play with a puzzle or read a book. I feel the irony of that, that we are here to save his life so that I can ignore him while it’s happening. But I need to hide inside my own head a while. So I have a notebook and write my thoughts and observations.

The rude mom is now texting. Her daughter is busy with the puzzle, so the mom is now momentarily free. She texts quickly, jabbing the phone with angry fingers. Her eyes dart back and forth from her phone to her child, almost manically. Then she gets a call and talks briefly on the phone while pacing around the bed. We all pretend to be very busy not listening. She gives a brief report, blood count, waiting time, length of treatment, next step. When she hangs up she looks over at us to see if we were listening, but our eyes scatter with the wind of her glare.

She is rude. There’s just no way else to describe it. But not the normal rude. This is the Cancer Rude. It’s a totally different attitude, and one that none of us in that room would criticize her for. We just note it, and give her space.

Why is she Cancer Rude? Because she just found out a few days ago her little girl has leukemia. We know that, all of us in this room. We heard her talk about it on the phone, but we already knew she was a newbie. We knew it when she arrived and didn’t say hello, and spoke so syrupy sweet to her daughter, and stared in panic when the nurse left, and didn’t make eye contact with any of us. And we knew it anyway because, well, her kid has hair.

Beautiful, long blond hair.

Other than the cancer-newbie rudeness, there isn’t much to distinguish this woman from anyone else on the street. She is walking and talking and texting like anyone else would. But, of course, she is screaming inside. She probably hasn’t slept a normal night since The Diagnosis. She actually may never again. She has entered a world from which there is no escape. Even after treatment, and fortunately there are good odds that the treatment will work, she is not going to be leaving the cancer world. She is going to adapt, and she will become one of us. The Cancer Moms.

I ended up talking to her. She is actually really nice. Just scared beyond belief. So scared she is no longer aware of her behaviour. I know I was like that. Hey, maybe I still am.

The Smiley girl has the same cancer as the Rude Mom’s girl. I feel a pang of jealousy or envy as they talk, because they have more in common. Envy? Am I crazy? Leukemia treatment takes two to three years! Elliot should be done in 2 more months if everything goes according to the protocol for his kidney cancer. Then again I guess that’s the advantage of having a cancer that forms a big lump that you can just cut right out of the body (along with a vital organ of course). Leukemia is everywhere, there’s nothing to cut, nothing to remove. So ours is a better cancer. Ok so Elliot has a massive scar across his stomach and one less kidney, it’s still better, right? Shall we have a cancer competition?

Smiley Girl’s mom looks tired. She has deep bags under her eyes, I note as I stare at her surreptitiously. Ok I’m actually just blatantly staring at her, but she’s busy picking the blanket up off the floor where Smiley Girl has kicked it again. I look at my husband and realize he looks pretty tired too. I carefully analyze him as he stares unblinking at his phone. He actually does have quite a few wrinkles around his eyes today, although not unhandsome. It’s kind of unfair that men can have handsome wrinkles. Were they always there? I start to worry a bit about him, then tell myself to stop, which only increases my worry. Sigh, I have to stop this thought process, quick.

Oh relief, a new kid comes in, to take the bed of the one who left. Something else to focus on. Certain things still put me over the edge, even though I’m no longer a newbie. I’m better at controlling it now, ripping my brain away from the scary thought and forcing it onto something else.

I’ll leave you now as the new kid enters the scene, and will continue in a couple days. It’s late and the house is quiet, and I should sleep too. So stay tuned for scenes from next blog’s “Chemo Ward”, with action-packed boredom and comedic tragedy!

5 thoughts on “A Day on the Chemo Ward.”

  1. J’adore la chimio-compétition!!!! C’est tout à fait ça! Encore une fois ton texte est remarquable. Continue!!! J’attends impatiemment la suite. Baci. Flavia

    1. Merci Flavia! Je continue la suite dans quelques jours. J’ai beaucoup de matériel! On a passé tellement de longues heures dans cette salle. Je dois admettre que ca m’a ouvert la porte à un nouveau monde, et j’ai de nouveaux amis (entre autre toi!) que je n’aurai pas eu autrement. Donc, pas tout du négatif!

  2. Looking forward to these stories, Nicole. You’ve captured the chemo experience very well – a mix of anxiety and boredom.

    That rude mother kinda reminds me of myself during the early chemo days. I didn’t want to be anti-social, but I couldn’t stand to acknowledge where I was, what was happening. When it came to treatments, I just tried to sleep and tune out the world. I’m glad you helped break through her guard and have a talk.

    You’re writing is excellent, Nicole. Keep up the written reflections – I can feel how therapeutic it is through your words.

    1. HI Catherine, I think we all go through that phase after hearing the diagnosis… And of course, for you, on top of it, you would have had all the physical side effects too which greatly affects your emotional state. It’s such a tough time. There is a really great parents association here which supports families going through this, I am so glad they exist. I hope I can help others at some point like they have helped me!

  3. I don’t think I’ve admitted this to anyone, but I had leukemia jealousy too in exactly the same way.

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