Monthly Archives: May 2012

A Day on The Chemo Ward, Part 3

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Elliot stopped watching a movie for a while and has eaten his lunch. I’m so glad he is eating well, but I am also calculating how hard it will be to wash the car seat if he’s sick on the way home later. It’s important to choose food colour wisely.

 

He really is handling this all so well. He amazes us. But then again, we amaze us too. We are really coping with this well. We are past the terrified-beyond-belief point, and have settled into nervous acceptance. People say cancer makes you stronger. I guess so. But really, what choice do we have? I can’t exactly just curl up in bed under a heavy blanket and come out in 6 months, can I?  (Oh how I wish sometimes I could…The doctor gave me some anxiety meds to help me “cope” but I never used them. I really wish there was a “six months under heavy blanket” prescription. By the way, I never thought I would be someone who said “meds”. And now there you go, I’ve gone and written it. Probably all those omega 3s from the salmon sandwiches making my brain all light and fuzzy.)

 

The thing we didn’t know, going into this, is that Elliot will continue to be a real boy, and that we will continue to have to be real parents. He’s not acting like a patient. It’s funny, at the beginning he got a lot of get well soon cards.  It didn’t make sense to him. He feels fine, always has. Only when he has the nausea, which is only for a few days after the more intense chemo treatments, but even then he still manages to stay cheerful. To him this whole cancer thing has been very intangible. He never felt wrong even before diagnosis, and for that I suppose we should be eternally grateful. We got lucky to have found it when we did. I noticed the lump sticking out of the side of his belly after his bath one morning, and since I’m a worrier, I brought him to the pediatrician the same day. Felt foolish. Actually said to her when we arrived that I was probably wasting her time. But the look on her face when she examined him… Fast forward 8 months and here were are. Lump gone. Kidney it grew on too. Chemo successfully destroying all the baby lumps that had grown all over his lungs. Radiation therapy having zapped the empty space where the main tumour used to be to make sure no little stray cells decide to make trouble.

 

But other than the fact that our child has cancer (there’s a great opening line), our life goes on like everyone else, with the same issues as everyone else. We have jobs and school and chores and all the millions of things normal parents juggle every day. We try to make time for the two older kids so they don’t feel abandoned, we try to make time for each other so that our relationship thrives. By that I mean of course that we all watch tv together. Ok we also have loud indulgent family suppers together, not every night since our family of 5 not surprisingly has 5 different schedules. But we are surviving this together, all of us holding on to the fact that medicine is probably going to keep us together for quite a while, not really needing to talk about how close to the precipice we have come.

 

As I sit here in the chemo ward, I think about my two older boys and feel a wave of motherly love combined with a sudden desire to text the oldest and ask if he really did remember to take the garbage out this morning when he left. Parenting is all about balance.

 

Suddenly the doctor comes in to check on us. All the parents drop what they’re doing and sit up. The Rude Mom even stands (such a newbie! Never appear so desperate in front of the doctor! It’s like dating, you have to make them come to you). Martin puts his phone down. It’s Dr. Latour, and she scares the crap out of me. I spend my time whenever she’s around half terrified and half furious. I have no valid reason for this, she is actually much shorter than me, I could take her. Ha ha. No, the reason I am angry and scared is because she was The One. It was her who gave us to official diagnosis. “Your son has cancer. It is very advanced. His odds are 50%. But we will cure him.”

 

I have replayed that conversation over and over in my mind so many times it’s like an old movie now. I’ve tried to logic my way through it. How could she say the odds are 50% but in the same conversation, say “we will cure him”. Those statements don’t go together. Did she mean that statistics say 50%, but their treatment will work better than that? Or did she mean we will “try” to cure him? But she said it twice that night. “We will cure him”.

 

The conversation goes around and around in my head like a merry go round, making me dizzy. “Odds are 50%. We will cure him. 50%. Cure.”

 

I would ask her for clarification if I wasn’t so damn scared of her. Also it is unlikely she would remember our exact conversation of eight months ago word for word as she probably hasn’t been replaying it over and over in her head like a maniac.

 

My fear and anger do not come from anything about her personality, or her treatment of Elliot, or how she treats us. In fact she is very kind and patient. She obviously really cares, when Elliot told her he wanted Santa to bring him a toy hospital for Christmas she sighed and hugged him.

 

It’s because it was her who gave us the bad news, and because of that every time I see her my body and soul go back to that moment, and I am shaking with fear and fury. Inside only, of course, on the outside I act just like all the other moms, which is that I try to make sure she likes my child and me best.

 

She does the rounds, stopping at each bedside and talking with the parents, going to Rude Mom last (See? Too desperate.) She doesn’t really stay long, each of us had a private meeting with her before our chemo dose today, where our child was thoroughly checked over and our questions answered, the treatment plan discussed. She’s just here now to make sure everything is running smoothly.

 

When she checked Elliot earlier I felt a wave of fear overtake me as usual when he was lying on his back on the examining table, shirt off, and she started to feel around his belly. She always starts on the left side, where he still has a kidney, and presses into his stomach like she’s kneading bread. I wonder if she realizes how much the parents are holding their breath during those moments.  Waiting for her to be done, watching to see if she is acting normal or concerned. Does she realize how we watch her face for the slightest hint that something is wrong? To her, this is routine, she could be thinking of something completely different while examining him, and we are on the edge of our chairs, holding our breaths. She could suddenly remember that she forgot to return her library books, and a look of concern could flash momentarily across her face, and we would die. I’ve already died a hundred deaths that way.

 

There’s another doctor we see sometimes, Dr Winters, who is one of the head honchos. He is older than Dr. Latour, and is always smiling and relaxed. I wonder how you get years of experience in pediatric oncology and still manage to not drown every now and then. They must see some awful things. They live it too; they all, without a doubt, want to cure our kids. The nurses too. How do they keep smiling? Then again, how do I?

 

Dr. Winters always has a good expression on his face while he’s examining Elliot. By that I mean, if you happen to be a parent sitting there analyzing facial expressions with the hope of determining whether your child will live, he fills you with hope. He’s just always so casual and relaxed around us. I fear he’s like that with everyone. I would like to believe it’s because he is so pleased with how well Elliot is responding to the treatment and is completely unconcerned about his recovery, but there is a part of me that believes this is just his normal personality. He could actually be telling you multiple new tumours have been discovered in your child’s entire body from the tip of his nose to the smallest toe, and you would smile dazedly and think everything is great.

 

It was Dr. Winters who gave us the results of the second CT scan, the one done after 6 weeks of chemo. He started by saying it was good news, as soon as we entered the room, before we even sat down. That set the scene. We hardly listened to anything after that. At one point I remember asking if it meant that a second operation on any lung tumours was definitely ruled out, and he casually scrolled the mouse while gazing at the CT images on the computer and said “hmmm… well… I can’t completely rule out the possibility of a second operation…” He said it in the same cheerful, casual way he always sounds… Like, he could have been looking over the dinner menu and said “hmmm… I can’t completely rule out the possibility of dessert…”

 

So ok I guess I have trust issues. I don’t completely trust the doctors. I analyze everything they say, every way they act. And yet they are truly amazing people. Dr. Latour, for example, was the one who met us and admitted Elliot to the hospital pediatric oncology floor (It’s a whole FLOOR), eight months ago, before we knew exactly what this was Elliot had in his abdomen. She greeted us at 8:30am with another doctor, Dr. Nelson. They both examined Elliot, discussed with us what they would do that day (blood tests, CT scan for which they would have to put him to sleep, results later in the day).

We saw them come and go, passing in the hallway outside our room throughout the day, as our worry slowly increased and we started to wake up to the fact that we were possibly in this for the long term… We still were so innocent then. I saw Dr. Nelson running down the hall late in the afternoon toward another child’s room. I remember thinking, “oh, he looks worried, and he’s running. Something serious is happening!  I hope nobody’s kid is desperately sick!” Not realizing how close my own child was to needing a doctor to run to his room…

They had a few emergencies during the afternoon, and we were only finally summoned to a private meeting room with him and Dr. Latour at 8:30pm, to be given the results of the CT scan. They asked us to come alone, and they arranged for a nurse to sit with Elliot. That’s when my heart started stopping.

 

I won’t go over the details, it is still too hard. But my point was, notice the time frame. Those two doctors were already there before we arrived at 8:30am, they were still there to give us the results patiently at 8:30pm… and they didn’t leave even after that. Dr. Latour stopped by our room some time later (the clock actually stopped for me at 8:30pm that night, so I have no idea how much later it was… I can tell you roughly how many tears later it was, and how many punch the wall moments later it was…) Their dedication to their job, and to curing our kids, is remarkable.

So trust is what I have to do. It’s all I have. She said they would cure him, and it seems to be happening. It’s late, the house is quiet again, and time to sleep.  More later.

A Day on the Chemo Ward, Part 2

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A new kid has come into the chemo ward, which is great for me because it gives me something else to focus on.  I don’t want to indulge in worrying thoughts so it’s better if I can people watch.

The new kid is a teenager. They get to me the most. Maybe because I have two of my own. My teens are not too affected by Elliot’s illness, perhaps because when we told them it is a highly curable cancer, they, strangely enough, believed us. That’s what you get for raising confident, self-assured kids. I am generally alone in my obsessive worrying. But I worry enough for all of us so our family worry quota is full anyway.

The teenager is a boy, quite tall, and wearing a very cool looking wool hat, black with a red design on the front, that, unless I am mistaken, looks like a skull and crossbones.  Teenage irony? He keeps the hat on all the time, even after taking off his coat and shoes.  He is so physically different from the other kids in here it almost feels like he walked into the wrong ward. Even my five year old looks tiny by comparison. The nurse gets him to stand on the scale, the same one Elliot was on a few hours ago, while Martin and I hovered nearby glaring at the digital read-out as it settles on a number, trying to force it with the strength of our stares to increase a bit more. (Martin and I don’t really talk about these moments, so I don’t actually know if he is trying the mind-control-stare-thing on the scale, but I like to imagine he is putting all his energy into it. Hate to think I’m standing there controlling the number with my eyes burning from non-blinking all alone).

Despite his height and age, when the teenager stands on the scale he suddenly  seems just like Elliot to me. Perched there with his too-cool hat hiding his bald head, his thin teenage body obvious under the oversize t shirt and low hanging jeans.

He hops off the scale and sits casually on the edge of “his” bed. He looks at us and says hello politely to each parent. I notice his eyes linger a bit on the Rude mom’s daughter and her long blond hair. It’s not jealousy though, I think. Might be pity. Or… maybe it’s a flashback.  A memory of when it all started for him.

I think it’s harder on the teenagers. They know what’s going on. They understand the possibilities. They also know what a “side-effect” of medication is, they know why they happen and when they will happen again. They understand they are being made to feel awful so that they can get better. But like the younger kids, they really just want to have fun with their friends, and they don’t want to be here. I think they feel the unfairness of this even more. And it is unfair. They should be at school or maybe downtown, hanging out with their friends,  eating junk food, going to the movies, laughing at jokes we don’t get and listening to music we don’t like,  discussing anti-globalization like they know what they’re talking about and then twittering about it in complete innocence, posting updates and funny pictures on facebook every 5 minutes. They should be studying for their biology exams, not hoping biology is what keeps them alive a bit longer.

His mom comes in. Definitely not a newbie. She smiles at each of us and says hello, looks directly at our kids and smiles at them too. She acts like she is home. Or at least, like she feels safe here. And maybe that’s it, here is where her son will be taken care of by someone other than her for a change, where someone else can take over the worrying for her for a while. And here, she is not a freak, she fits in. She is one of us, in fact, it turns out she’s an old pro. Her son has relapsed from leukemia, originally diagnosed four years ago. He’s been in treatment for a few months, receiving chemo, and they are now looking into stem cell transplant options. When you hear that, you imagine a poor frail guy lying in a hospital bed and hovering on the edge of life. But this boy is sitting there drumming with his hands on his legs, listening to a song on his ipod, gazing out the window. He looks fine. He actually is, in reality, hovering on the edge of life, but he also has some good odds on his side. Not as good as the rest of us in that room; relapses are harder to cure, but for now the treatment is keeping his cancer from leaching his life away from him too quickly. It has slowed it down, put the brakes on the cancer steamroller plowing him over, but it hasn’t killed it. The drugs are just not strong enough for that. But he is very, very lucky to have a brother, and he is hopefully even luckier if that brother turns out to be a highly compatible match. A stem cell transplant for leukemia can be done even with a stranger’s donation, but the closer the match, the higher the cure rate. His mother has explained all this to the Rude Mom, just chatting in a friendly, casual way, while Rude Mom stares at her like a deer gazing silently into the headlights.

So, what are his odds? I watch him as he gazes out the window. His name is Patrick. His mom has said it several times, in each conversation she says his name frequently, like saying it keeps him alive. His music is on too loud, we can all hear it, the staticky noise of music escaping from headphones. It’s some kind of annoying song that my older kids would like. He taps away at his legs, a casual drummer lying in bed in a roomful of strangers. His mom has gone back out now and is talking to the nurse.

I do some googling on my phone. I want to know more about stem cell transplants. I used to be afraid of looking these things up, but not so  much anymore.

If his brother is a good match, his odds, if he survives the transplant of course, are between 50 and 70%. If the treatment is a go, which they should know soon once they are done analyzing the brother’s cells, they will admit Patrick to the hospital and start destroying him. By that I mean they will begin the intense radiation and chemotherapy treatment to completely wipe out his own bone marrow, to make room for the new stuff. Also to destroy all the cancer hiding in there.

Of course, they kill everything else while they’re at it, and he’ll have a high risk of getting an infection from his own body. He’ll have all the fun chemo side effects, the nausea, mouth sores, aches and pains, etc. He has a fairly high risk of long term side effects like infertility and cataracts. Then, once he gets through the transplant and the risky period for the first weeks right after, he’ll have to keep taking immune suppressing medication for a long time so that his body doesn’t  destroy the new cells. But that means he also won’t be able to destroy any viruses or bacteria he is exposed to in the outside world. It’s like walking on a high wire, balancing precariously on the edge of possibilities.

It turns out they get the results that day.  Patrick is lucky. His brother is a good match. The mother is acting all happy, but also looks like she might cry. Her hands are shaking. She actually says “Patrick” three times in a row without attaching a sentence to it. For some reason, I keep wondering how the brother feels. They have a long road ahead of them, and about an hour later they leave, headed for the admissions office. Good luck, Patrick, I whisper in my mind. See you when they let you out next year.

I am humming one of the annoying songs he was listening to and find I like it after all.

 

…More in a few days…

A Day on the Chemo Ward.

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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!

Have you been Swissified yet?

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Cultural identity of expats in Switzerland – just who are we anyway?

 

The whole Save WRS radio station issue has got me thinking a lot about cultural identity in an expat world. I signed the petition because I want to save the radio station, which is Switzerland’s only publicly-funded English language station and could close based on the Swiss Broadcasting Corporation’s imminent decision. But the issues it brought up are bigger than “just” whether an English language radio station should be subsidized by tax revenue in a country where English is not an official language.

 

It’s actually not that hard to see the reasons against WRS. Would you agree to subsidize an Italian radio station in Texas? Well, probably not, that would seem illogical. But what if the Italian language station itself was a major part of Texan culture? What if the Italian language is what made some foreigners integrate into Texan culture?

 

Ok I’ll stop with the Texas analogy (Can you imagine Clint riding around on a horse in a movie called “ Il buono, il brutto, il cattivo”? Impossible! ;-) ) But my point is this: there is a specific cultural identity in Switzerland tied to the English language that is not merely an “outsiders” culture. It’s local. It’s Swiss. Kind of.

 

Take me, for example (I am an easy example, frankly.) I’m Canadian. Been here almost 11 years. I speak French and English (I also now speak a bit of Danish but that’s a whole other story). My two oldest boys, who moved here with me 11 years ago, can switch accents between French-Canadian and Suisse Romand without batting an eye. I have not adapted that much yet and probably never will, as soon as I open my mouth I betray my French-canadian-ness, to the delight of the Swiss I must add.  In another year I can apply for Swiss citizenship and I wonder if they will test me to see if I can pronounce the word “dix” without using the letter “z”. Maybe it’ll help if I show I can say “Chuchichäschtli”? (I really can, my Swiss-German friend made me practice till my mouth hurt.)

The majority of my co-workers are Swiss, from all over the country. But there are still almost 40% non-Swiss at my work-place, from all over the world. With the other foreigners, we speak either French, or English, or a mixture of a few different languages depending on who’s talking and who’s listening. It would not be surprising for a conversation to start in Swiss German, switch to French, switch again to English and have a few side-arguments debated in Italian and Serbian. The only strange thing about it all is that we all seem to understand each other.

 

There is no doubt that I’m not Swiss (yet!) I am Canadian, always will be. But just how Canadian am I anymore? How much “Swissness” has rubbed off on me, so that if I return to Canada I don’t really fit in there anymore either? This is a conversation I’ve had with many of my expat friends and co-workers, and we all agree, there is a point when we don’t belong back home anymore either.

Example: you’re back in your home country, and you sneeze. Nobody rushes to say “santé”, and you’re shocked. You could, after all, be dying of some terrible sneeze-causing disease and nobody has wished health on you! Or, you listen to the weather forecast and they say snow is expected, but don’t tell you at how many meters! Or, you want to cross the street at a crosswalk, and the cars don’t all slam their breaks to let you pass! What’s up with that? Or, worse than anything, you get served a coffee and there is no small chocolate next to it!

When exactly does it happen that we go from being “Canadian-living in Switzerland” (or English or Australian or American or Serbian or German or…) to being Swissified-Canadian? Is it that first moment when you’re sitting at home relaxing on a Sunday and you hear a new neighbour drilling a hole loudly and you actually “harumpf” out loud? Is it when you give your teenagers 100 francs to go pick up take-away pizzas for them and their two friends and you wonder if you gave them enough money? Is it when someone from another country (probably your own) talks about “Swiss cheese” and you go into a tirade of describing the difference between emmentaler, gruyere, vacherin, appenzeller and the non-existence of a cheese simply called “Swiss”?

 

And, circling back to my original point (you were probably wondering if I was going to manage that), if there is such a thing as being Swissified, then as a unique part of the Swiss culture should it not be supported through a local radio station that exemplifies all that we, The Swissified, stand for?

 

Because I know I’m just not a normal Canadian anymore. (Opening myself up to some comments from the peanut gallery there I know.) I’m in-between two cultures, and I love it.

What is courage?

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Bravery… courage… what exactly does it mean to be brave? More and more I am realizing that courage is not what we think. Superheroes aren’t brave, they have super powers, it’s easy for them! True bravery is much more complicated. It’s standing up in the face of fear. How I wish I had some kind of magic power to use when the doctor calls with the CT scan results, I could just call out “Wonder Twin Powers, activate!” and somehow, magically, everything would turn out ok. (Did I just show my age there?)

So last evening I was reading the book The C Card and Me, by Ali Gilmore. It is an excellent resource and uplifting guide to getting through a cancer diagnosis and treatment, written by someone who should know: Ali’s cancer was stage 4 (as was Elliot’s at diagnosis).

 I had been feeling a bit anxious for no obvious reason other than the fact that last Monday at the hospital we were given the appointment for the end-of-treatment CT scan in about 6 weeks. This scan is unlikely to be bad, but still, since I’m a professional worrier it’s a perfect opportunity to dwell on the “what-ifs”. I know I should look at it as an opportunity to have a check up confirming what we already know; that Elliot’s cancer is in full remission, and then walking out of that hospital knowing we don’t have to go back for three whole months (hurray!). But I would not want to miss out on an opportunity for a good worry. So I curled up on the sofa with the book and an edge of anxiety that I couldn’t shake.

 Then I got to Chapter 3, Show No Fear. Many parts of this book are relevant for me in regards to how it can help me get Elliot through this difficult time, but this chapter spoke to me directly. Ali says it pretty clearly: “Cancer is no more than a bully.” I think I actually sat up on the couch while reading that sentence.

 It is just so true. Being afraid of a bully just gives him more power, more control over your life. But how do you overcome your fear without special powers? There really is no magic to it, and I’m still practicing this part… But basically, what I have learned is, you don’t. The fear stays. But you stand up to the bully anyway. Basically, you have to be the quivering little kid on the playground refusing to get off the swing just because Mr. Bigshot and all his sidekicks are taunting you with threats. Bravery is feeling afraid, but holding on tightly to your swing anyway. Maybe even swinging a little higher.

 It reminds me of a trip to London I made a few years ago. A good friend of mine from Ottawa was meeting me there for a few days before continuing on a work trip. I flew in from Geneva for a few days of fun, shopping and catching up.

 The date was July 8th, 2005.

 Most of my British friends might have caught their breaths a little there, but for those who didn’t make the connection, July 7th, 2005, the day before we arrived, is also known as 7/7… The day four terrorists bombed the Underground and bus system in downtown London, causing massive devastation, killing 52 people and injuring 700.

 Even if you are not British, I think that day was an emotional blow, in a world where we had all been starting to hope things might go back to normal.

 So we land in London. People are scared. We’re scared. Our hotel is near the airport, so the first evening is spent in the bar with the many other travelers all trying to drown their fear (there is a fun story about horse saddle shaped bar stools but that will have to be for another time). We all act shocked, outraged, but defiant.

 The next day the plan is to head downtown for some shopping, lunch, fun. Nervous? Yes, but I don’t say anything to Sylvie. She just looks totally fearless, unshaken. So how to get there? The Underground. “Well,” I say, “If everybody stops using the Underground, “they” win.” “That’s exactly right!” Sylvie says, and I’m a bit disappointed. Frankly, the last place I feel like going is on a train underground where terrorists have just struck. I was kind of hoping she would knock some sense into me and insist we take a taxi.

 We bravely head for the Underground station. We start down the escalator. Sylvie is staring at her feet. I am pretty sure we have lost our minds. I’m also sure that no Londoner in their right mind will be down here today. It’s a hot day, but that doesn’t explain the sweat I feel on my neck.

 We come around the corner and the platform only has about half a million people on it. Ok, Londoners. If you can do it, we can too. I am so nervous my heart is pounding in my ears. The train comes, we board, amid the crowd. I notice my reflection in the mirror and am surprised at the slightly crazy smile I am wearing. I am holding onto the metal railing and my hand is sliding around with dampness. The whole train is strangely completely quiet, despite the number of people. I look at Sylvie and say something about what a fun day it’s going to be, and my voice sounds like a squeak. She smiles crazily and replies in a croaky whisper: “My shoes are full of water.”

 After several agonizing minutes, the train finally pulls into our station, and we pour out of the train with most of the other passengers. There is a general, massive sigh of relief from the crowd. The volume slowly increases, people start chatting, laughing.

 We made it. We were all scared, everyone on that train, but we did it anyway. Why? Because if we don’t “they” win.

 And we head out to buy Sylvie some new shoes.

 So what’s the moral of the story? I guess it’s accepting your fear, but going forward anyway. Living life to the fullest, knowing full well it could all be taken away.

 Oh, and shoes. Definitely, shoes.

The Road to Nowhere

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Here’s a post that was published on the Moms-In-Vaud website (http://www.moms-in-vaud.com/blog/2012/05/momblog-the-road-to-nowhere-my-morning-drive-to-work-along-the-a1/). It’s non-cancer related, and was totally fun to write, as I’m sure so many people will be able to relate! Even if you don’t live in Switzerland, I’m sure you will empathize with me as I embark on my morning commute to work…

 

The Road to Nowhere…
…My morning drive to work along the A1.

The alarm clock rings, and the stress begins. Kids must be woken, fed, chased with a toothbrush, dressed in something reasonably unwrinkled, and forced out the door. I need to shower, choose clothes that looks half decent and matches the weather forecast (sunny and hot with good chance of rain and cold), eat something half decent (healthy and nutritious but tasting hopefully cheesy and salty). Get my hair under control. Pack a lunch. Find shoes that go with the outfit (classy, serious, sexy, comfortable and waterproof).

Clearly, mornings are not easy, and are full of conflicting goals. But then, we all have the same issues, don’t we? And then, for those of us living in the La Côte area, comes the next challenge of the day, one which can crack this day open at the seams, turning it into an official Bad Day. The A1.

Yes, you guessed it, I work in Geneva. I live in Rolle. You see the picture I’m painting?

I’m lucky that my job involves shifts that frequently spare me too much A1 pain and suffering. (Hey that sounds like an actual illness, like H1N1, only this one is A1P&S). However, frequently I must join the millions of others boarding the infamous highway at rush hour. Ok I may be slightly exaggerating in my estimate of the number of commuters, but I think you know where I’m coming from.

And so the challenge begins. Step One: check the traffic situation on my iphone. Of course, despite the fact that I have done this morning routine millions of times (also slight exaggeration possible), I ALWAYS  think to do this only once I am walking (rushing) to my car. So Step One is actually a series of carefully synchronized smaller steps all done simultaneously: walk toward car, fish iphone out of depths of purse, juggle lunch bag on other shoulder, consider whether shoes which are too tight were bad choice as I hobble quickly along, find traffic app and tap to load, fish keys out of depths of purse with third hand, exit itunes app accidentally opened because not paying attention and open traffic app, say “bonjour” to neighbour who looks completely sophisticated and calm and is wearing extremely pointy high heel shoes that somehow don’t look uncomfortable (how do the Swiss do that?), unlock car doors with remote, read traffic app that hints mysteriously in French at an overload of traffic but still suggests cars are moving along, unlock doors again since accidentally pushed lock instead of unlock, wave to neighbour who is already driving off at breakneck speed with perfectly immobile hair and notice her manicured hands as she waves back, open car door and toss purse, lunch bag, iphone and keys onto passenger seat and get in.

Step Two: Sit in car and pick up contents of purse which spilled accidentally onto passenger seat and on floor. Find keys under iphone. Start car.

Step Three: Turn on car’s GPS and back carefully out of parking spot without hitting anything (I always stop when the beep beep back up thingy flatlines anyway).

Step Four: Wait for garage door to open automatically for me, notice for the millionth time that it really does seem to open slower for me than everyone else. Finally on my way.

Step Five: As I approach the highway entrance, my GPS decides to change its mind (it gets temperamental like that) and annoyingly suggests an alternate route via the lake road. I ignore it, confident in my traffic info research, and in an unmerited act of vengeance it waits till I am committed to the on-ramp before turning the highway line a bright red on the screen. I get a bit nervous but decide it’s just being moody because I ignored it yesterday when it wanted me to turn left into a stone wall.

Step Six: Merge into the relatively busy traffic by maneuvering between an incredibly fast moving transport truck and an incredibly slow moving white Audi (how many white Audis are out there this year, by the way? Is white this year’s grey in the Audi world?).

Step Seven: Settle into the drive.Turn on WRS. Can’t believe we might actually lose that station. That could actually put some of us over the edge. Bet they haven’t put that into the petition. Listen to people on the radio talking calmly and casually while the people actually around me are tensely hunched over their steering wheels, eyes darting left and right, guarding the spacing between them and the car ahead so nobody dares invade it, snarling wildly at any car coming too close (I include myself in this description of course.)

Step Eight: Actually say “ha!” as I pass the Gland exit and traffic is still flowing.

Step Nine: Heart sinks as a red wall of traffic lights appears in the distance.

Step Ten: Am stopped in traffic between Gland and Nyon.. Send a text to hubby saying “Am stopped in traffic between Gland and Nyon”. He replies cleverly with: “That sucks.”

Step Eleven: Twenty minutes later I am approaching the Nyon exit. Now comes decision making time. Should I exit and try the lake road, or even the upper road through the villages above the highway, or stay on the highway in the hopes it clears? I deliberate. I weigh the pros and cons. The lake road could be just as bad. The upper roads take a lot longer, usually. But the highway might be blocked all the way to Vengeance though! By the way, sidebar here, I know it’s not really called Vengeance but that’s what my brain sees whenever I see that sign saying “Vengeron”..

I am getting close to the exit, need to make up my mind. Can’t decide if I should exit or not! As my car inches forward I quickly text hubby saying “Can’t decide if I should exit or not!”. He cleverly replies: “That sucks.”.

My mind wracked with all the possibilities I continue the quiet debate with myself, occasionally reprimanding myself about not being able to make a decision. (Sidebar: good thing my job does not require quick decision making skills. I’m just an air traffic controller.) Suddenly the car ahead  of me lurches forward at sudden surprising speed so I decide to stick to the highway. I watch the exit go by, then am back again in the crunch of snails.

By the time I get to work three hours later (ok it’s actually only 30 minutes later but I was counting in dog years), I am exhausted. My feet ache, my head is pounding, I have clearly lost control of today’s hair battle and I am too hot. It starts to rain on the walk from my parking spot to my work entrance. My shoes are not, I repeat, not waterproof.

And the best part is, after a relaxing day at work, I get to repeat the whole scenario on the way home!

Advice to Adults With Cancer from a 5 year old

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Here’s a light-hearted look at cancer from the point of view of my son Elliot, who was only 4 and a half when diagnosed. I know many of the adults I am in touch with who have cancer, or who are helping a person with cancer through this journey, will relate!

Advice to adults with cancer from a 5 year old

1. It is perfectly acceptable to have a complete tantrum and throw your shoes around just before leaving for the hospital.
2. You always deserve a present after chemo.
3. If you feel like showing more respect and politeness to the hospital clown than your oncologist, that’s ok.
4. If you manage to grab the syringe of medicine from the nurse, it’s their loss and you are then allowed to squirt its’ entire content around the room.
5. You are allowed to complain loudly about any smells like perfume, but you are also allowed to fart freely whenever and wherever you want.
6. Anyone who says “this one tastes like syrup” better be not be lying or they can expect to catch some spit.
7. You are allowed to worry about life and death, but only to the same extent that you worry about whether Santa Claus will be able enter your home if you don’t have a chimney.
8. Speaking of worry, you are not allowed to worry about anything that is not going to happen today or tomorrow.
9. Any bad thing that happened in the past should be quickly erased from your mind using ice cream.
10. It’s ok to throw up directly on your caregiver instead of into the bucket they are holding. It will create warm and funny memories for them once this is all over.
11. Good friends may stare when they first see you without any hair, but they are quickly more interested in all your new toys. So make sure you have lots of new toys around all the time.
12. It is the right thing to do to jump off the examining table if the doctor’s hands are too cold.
13. A popsicle for breakfast is a good idea and goes well with bacon.
14. If someone rubs your bald head and says you’re cute you should stare at them in complete boredom until they stop.
15. Always believe that scars are badges of courage and make you look like a pirate or a superhero.
16. Jumping on the bed is a perfectly acceptable form of exercise.
17. Someone should always be available to carry you if you don’t feel like walking anymore and they will be grateful if you look at them lovingly and say “You’re my slave.”
18. It’s a good idea to frequently press the little button next to the bed that makes the nurse come running, because she might be lonely and bored, and enjoys picking your crayon up from the floor.
19. The only part of hospital food you should eat is the desert. The rest is not really food anyway.
20. Make having fun your priority, all the time, no matter where you are or what’s going to happen next.

The Woman’s Eyes

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I hardly notice anymore that Elliot has no hair. I do notice people’s reactions when they see him, if we’re at a restaurant or the store, and his hat falls off, or he takes it off, since he doesn’t really care. Sometimes, there’s a double-take. I’m not always sure what people think. I guess, looking at him, you would know right away that he’s a cancer kid. Although you see a lot of kids with crew cuts and even shaved heads these days, he has those few little wisps of fur-like hairs that are the tell-tale signs of chemo treatment.

Every now and then the subject comes up when he’s around, but it doesn’t seem to bother him much. His first reaction to losing his hair was how funny it was that he looks like his dad now. Not sure Martin was ever so proud as that moment when Elliot saw his reflection and said in surprise “Hey, I have almost no hair! I look like papa!”, then laughed and walked away. He has been relatively unaffected by the change in his looks. We’re careful, however, when the subject is mentioned and he’s around, to always say something positive about it. He’s only 5 years old, and not yet very aware of the importance people place on appearance, but he is at that age where he is starting to understand the meaning of “fitting in”.

Recently, a friend was visiting and mentioned that it looked like Elliot’s hair was growing back already (a temporary event since he’s still in chemo, sometimes it does seem to be sprouting up again like tiny weeds, then a week later he’s so bald his head shines).  Both Martin and I chimed in with our automatic remarks, something like“yep, it’ll grow back at some point, but in the meantime, he’s so handsome with those big blue eyes.” Sometimes we talk about how nice a head shape he has, or how great his ears look. And it’s all true, too. We actually find him to be quite a good looking kid. So we’re not lying or exaggerating his eye-beauty etc, it’s just a clever rebuttal, a re-direct.

But I actually don’t think the baldness issue is about looks, for most people. Even in the non-cancer world (you know, that world we all used to live in, going about our daily business naïvely thinking we were safe from… everything?). Even in the non-cancer world I think any negative view of chemo-baldness is really an instinctive judgement about health, not beauty. People associate this type of baldness with being sick. And, to be fair, it is often a pretty accurate instinct. But the fact is, there are many times, despite those rotten cells causing trouble,  when a person with cancer does not feel sick. At least not throw-up sick. Any of you out there by the way have levels or categories of sick? Like, throw-up-sick versus just lie-on-the-couch-too-tired-to-push-the-button-on-the-remote sick? Just curious, as I’m not the one with cancer in our home, I can’t judge for sure.

But since I do know that many times, a cancer-boy (or girl) does not feel very sick, we are sometimes out in public. Often I won’t take Elliot anywhere where there might be a lot of people, if the blood count is low. But other times, we do go to restaurants and stores, even the occasional playground if we’re feeling particularly invincible. And recently, that’s when I started to notice them. Well, the lack of them, actually. The others. The other baldies, like my son. I know the statistics: childhood cancer is quite rare, so bumping into another baldie while at the playground is probably unlikely But adult cancer is really so common, comparatively… So where are you all? Before I hurt anyone’s feelings, I will get off my high horse and say right away, as I have told many people, that if what had happened to Elliot had happened to me I would be tempted to go into my room and hide under my blanket and come out two years later. On the other hand, if I could trade places with him and have this stupid cancer be in my kidney instead, I would do it in a heartbeat. But that’s not possible.

So we head out “into the world” today and I wonder where everyone is. I would love to bump into a bald person. Seriously. I mean, obviously, I am into balding men anyway, but man would I like to see a woman or man wearing a scarf or hat like Elliot. Or just nothing. A nude head, parading around proudly in public for all to see. Wow, would that ever make me happy.

But generally, we never do see other cancer-fighters out there. Until yesterday. Lo! and Behold! I spot one. We are at the mall. It’s raining out, and we got bored at home (just how many legos does it take to build the Eiffel Tower, I will never know).

A woman comes over and sits next to me on a bench near the kids playing area where Elliot is running around. She is wearing a long silk scarf beautifully wrapped around her head. She does look pale, and maybe a bit thin, but actually pretty good.  I don’t say anything, but am silently excited. How can I convey to her that I am also from “that world?” Damn my hair.

Elliot runs over to ask if we can get an ice cream. He is wearing the blue sunhat with the octopus on the front (by the way, the octopus must absolutely be placed at exactly the correct frontal position or a tearful crisis will ensue. Cancer reaction or normal 5 year old? Anyone?)

With his hat it’s hard to tell he is bald. He stares blatantly at the woman. Then turns to me and says, and I am sure he speaks at least 10 decibels above his normal voice volume: “Hey, she’s bald”. I start to feel a bit hot. The woman clears her throat. She looks at him and smiles quietly. He takes that as an opening for him to increase the volume by another 20 decibels or so and ask her “How come YOU have no hair?”.

Now, I know why he’s asking. He wants to chat with her about baldness the way he would otherwise chat with a friend about playmobil. Baldness is familiar to him. If she had a visible scar he would probably happily lift his shirt up to show the one that stretches across his abdomen.

But the woman doesn’t know that, she just thinks he’s another innocent five year old asking an innocent question, and in a show of remarkable patience and probably practice she calmly says “Well, I have to take medicine that made my hair fall out. But it will grow back after a while”. Then she slowly gets up to go while Elliot stares at her with his “duh… I knew THAT” look.

And just as she starts to walk away he calls after her “Well it’s good that you have nice eyes!”
And she turns and stares at him a bit, and I love him.