Walking down the quiet hallway.

You never know how strong you are until being strong is the only choice you have...

You never know how strong you are until being strong is the only choice you have…

Sometimes, especially late in the evening like right now, the quiet of our home brings me back to the quiet of the hospital late at night. The haunting echo of my footsteps as I pace up and down the hallways, up and down, trying to walk away from the fear.

The nights when Elliot was in the ICU were the longest, there is no small cot for the parents in there, just a chair next to his bed and a curtain separating you from the next child. His epidural, we found out later, had been wrongly placed so he was in lots of pain, the nurses did their best with morphine injections and other painkillers. Martin and I knew right away we would not be leaving his side, not for one minute. We could not control the fact that he had cancer, but he would not wake up and be alone and in pain, that was one thing we could make sure of. So we divided the nights into shifts, each of us taking turns getting three hours of sleep in a small bedroom at a local student’s residence a block from the hospital and then coming in to replace the other.

These were some of the hardest nights. The hardest days too.  Exhaustion, anxiety, fear, achingly present all the time, all the time.

Some things went wrong. Because of the wrongly inserted epidural needle, Elliot had a neurological reaction to the lidocaine which was sent right up his nerves to his brain, he convulsed and his pupils dilated into different sizes. The doctors didn’t realize it was the epidural, so they told us it was probably a brain tumor and scheduled an emergency MRI. Did I mention these were some of the bad days?

Since the nurses felt the epidural wasn’t helping with pain management, they stopped using it. His eyes went back to normal, and the doctors met in a semi circle around his bed to finally decide it must not be a brain tumor after all. MRI cancelled, and off they go. And we stand there, shaking with relief, with fear, with a “what just happened?” expression as they all head off to the next case.

All day, both of us sitting next to his bed, on the alert in case he woke up in pain, ready to pounce at the little button to call the nurse. All night, tossing and turning in the student dorm, or sitting in the dark ICU next to his bed, shivering, with a thick sheet wrapped around my legs, another around my body, watching the little red lights blink, which mean everything is ok.

And when we were both there and one of us needed to stretch our legs, or at “shift change” in the middle of the night, the long slow walk down the quiet hallways.

Being given bad news, the nurse taking me out of the room to comfort me so that I don’t cry in front of my son. Being given the good news, walking out into the hallway feeling like I’m going to fly to the moon, and seeing another mother who is crying. The nurse comes to her.

The strangest feeling as I sit here tonight in my quiet living room, is that I know there is a child in that bed and a mother pacing that hallway right now, as I sit comfortably at home.

How many other moms have I met since this adventure began? How many other kids? I’m not exactly sure, but some very close friendships have been born out of this bizarre twist in the road my life has taken.  It is such a strange feeling to be glad about the friendships I have made on this trip, and yet to know I would wish this experience on no one.  I have had laugh-out-loud moments with other cancermoms, giggling like teenagers as we talk about some of the strange or ridiculous hospital situations we have been in. I have been in tears with the same moms.

One of the scariest moments for me strangely enough involved another mom’s child. I was on a girl’s trip with some non-cancer friends to Prague, out shopping all day, going to a concert at night. I had been so looking forward to this trip, my first time away for over a year. But anxiety kept eating away at the edge of my mind, I felt I didn’t “belong” in this world. I had changed but the world had stayed the same. I didn’t care as much about buying clothes or gifts, I struggled to let go of the worrying but anxious thoughts clung to me like a heavy blanket wrapped around my shoulders, dragging me down, making every step difficult.  My two good friends, who had flown all the way from Canada to meet up with me, could probably sense it, they have known me for a couple decades now.

Suddenly, a text message, from another mom I know who was at the hospital for a check up for her 4 year old girl. The message is brief. “There’s a long bright spot on the scan. It can only be a relapse.”

I stood reading and re-reading the message, cold Prague air creeping up around my ankles, into my coat, up my spine.

For the first few seconds, I felt nothing, just a strange sharp pain in my stomach. No emotion. There was no reason to expect a relapse in this little girl right now. The treatment had been very successful.  There were no signs, no symptoms. Kind of like… Elliot, when we discovered his cancer. No symptom at all. A perfectly healthy child, running around being normal, and suddenly they tell you he’s at death’s door.

I started to type a message back right away.

I can’t believe it…” No, that feels wrong! Delete.

Are you sure?…” Wrong. Delete. The ache in my stomach is getting worse. My fingers are wrapped tightly around the phone, frozen from the cold.

What did the doctors say?” Stupid question. Delete.

I can’t think of what to write. And the reason I can’t think of what to write is that there is nothing I can write that will fix this.

So I finally just wrote: “I’m here.  I’m crying.” Knowing that was no help at all. And then the tears came, not just for this little girl and her mom, but for all the kids, and for mine, and then for me, who didn’t deserve to have to worry so much about my own child, who should have been able to just enjoy a damn girl’s trip to Prague.

Of course my friends did exactly what friends should do in situations like this, which is wrap their arms around me, take me out for some drinks and desert for supper. (Sidebar: absinthe is very very cool to watch, as the bartender prepares it and pours and burns the sugar on the special metal carved spoon, but it tastes terrible.  Despite the desperate times, we could not drink it, and quickly left the Absinthe bar for a more sophisticated restaurant serving wine and decadent Czech deserts).

My friends, eager to make me feel better, talked it over, and decided that I was probably getting too immersed in the cancer world. I was drowning, worrying about every child, and this was making me unable to see that everything was now ok with mine. We decided I need to start focusing on other things. Get a hobby. Take a class. I agreed, actually starting to feel slightly embarrassed at my little tearful breakdown. It was all so logical. I just needed to distance myself from the cancer world.

But instead of feeling better, I started to feel angry. The wine and desert kept the anger quiet for a while, but it seeped in at some point in the middle of the night. I kept it hidden for most of the next day, since I was travelling back to Geneva, and anyway it’s easy to disguise anger when you’re at the airport and your flight is late, everyone is angry anyway.

Somewhere over western Austria I finally admitted to myself that I had no intentions of focusing on other things. I was angry at this relapse. It didn’t make sense. It was illogical (which cancer is, of course) but things that are illogical bug me.  The girl’s mom and I had texted back and forth a bit and apparently the doctors were mystified too. All the other tests were fine, just this one image that showed a relapse. This cancer was (and still is) just a big bully trying to scare us into admitting defeat. Well, NO, I thought. I’m not hiding from this, I’m not going to pretend it can’t happen to me. It could.

Yes, the logical thing would be to protect myself, to distance myself from any unpleasantness. The truth is, I do that a lot. I can’t watch any movies or tv shows where kids get hurt or die. I stopped reading the newspaper because there’s always a story about some horrific tragedy involving kids. It’s easier to just avoid unpleasant things, isn’t it?

But here’s the thing: I can’t abandon a friend. No matter what. And if it were me, if one day it happens to Elliot, I would not want all my cancer mom friends to run away and hide. I would want them to join forces to support me through this, no matter what. To be there, to join in the fight, to hold hands if things go wrong. To be strong when I can’t.

And strangely enough, once I made this decision, the nagging anxiety I had felt even before the Prague trip lifted. Yes, bad things happen. They happen even when they shouldn’t  and sometimes the unfairness is so bitter you can taste it. But sometimes, good things happen too.  In the middle of the fight for your child’s life you find you have made a friend. In what should be your darkest days you laugh out loud at something silly. In your weakest moment you discover a strength that wasn’t there before.

So there you go. I’m not leaving the cancer world. I DID take up a hobby, completely unrelated to cancer (I’m taking piano lessons! Ack! My piano teacher says the fact that I played piano as a child will help me learn it again… That was before she heard me play the piece I had practiced all week… She smiles a lot, kind of like you do when your shoes are too tight.)

No, instead, I’m going to toughen up. I’m going to face the fact that tragedy happens. I can try to help, try to hope for a miracle for everyone I meet along the way. I can be there, in the same way I would hope someone would be there for me if I needed it. I can stand by my friend and face whatever comes. I can research treatment options if it helps and keep calm and logical because it’s easier to keep the facts clear when it’s not your child. I can feel all the pain and fear but can also keep repeating the most important fact. “the doctor believes they can cure her.”

And the anger? I’ve channeled it. I remember reading that anger is the best emotion to make you take action. Anger is motivating. Anger is fuel. So I’m angry at cancer, and the result is that I’ve decided to stop cancer. Yeah, that’s right. You know, when I put my mind to something, I can be pretty stubborn about it. So there’s a few paths I can take: either I can quit my job and go back to school to study to become a medical researcher, and find a cure for some of the worst childhood cancers. This has the definite disadvantage of a)taking WAY too much time b)requiring me to study and c)losing my salary in the meantime. Not to mention the fact that I want to do something NOW. (Did I mention I have no patience?) So my other option is to find people who already have done all the studying and schooling and all that boring stuff, and support them as they try to find a cure for the worst childhood cancers.

So if you want to know why I’m involved in fundraising, now you know: it’s because I’m too lazy to study. Yeah, I’m often immersed in the cancer world (except for my clearly brilliant moments of piano playing), but it’s a conscious choice.

Being strong all the time when you’re alone is impossible. But if all of us cancermoms, cancerdads, cancerfriends  stand together, our combined strength will be enough.

When spider webs unite.

Remember my valiant story about undertaking my incredibly long and difficult marathon last year? Yeah, I know it has been pointed out to me that a “marathon” is officially 42.195kms therefore I should not have called mine a marathon at all. By that same token Terry Fox should not have called his the Marathon of Hope, since his was way way WAY too long to qualify as a marathon. So there, if Terry Fox can cheat on semantics, so can I.

Well, I finished my marathing (Ha! New word!) in record time (ok it took me two hours and I was aching for 5 days after) and raised over 3000 francs for childhood cancer research. Not bad eh? I felt pretty proud of myself.

Right after the marathing, we were all served hot pumpkin soup (which tasted like a small miracle to me after my 11km hike through the frozen wilderness) and I chatted with some of the other participants. One of them was Zoé’s aunt, Patricia. Zoé is a little girl Elliot and I have met along the way, who has battled neuroblastoma three times.

That’s the funny thing about my adventures in Cancerland – just when I start to feel like my situation is special in some way, someone else comes along to show me I aint seen nothin yet… The year we spent battling cancer alongside our 4 year old was the hardest, most painful, most frightening thing I have ever experienced.  Zoé and her family did it… THREE TIMES.

The 11 km trek through the frozen rain was physically exhausting and emotionally challenging – I felt like quitting at least once. (Oh who am I kidding, I felt like quitting within the first 15 minutes when a cheerful bearded man who looked to be about age 70 passed me, and then roughly every 10 minutes after that, as I kept trying to catch up to him and failing.)

Well, Zoé’s aunt Patricia was participating that day for another reason… For practice. Yep, this little 11km was nothing but a trial run! She and two friends, Sophie and Sarah, had signed up for an incredible adventure in support of childhood cancer research, one that made my little 11km seem like a stroll in the park.

The Amazon Green Tree Raid is a 7 day competition in Mauritius, for women only, requiring intense physical and mental stamina to complete difficult events in exotic natural settings, using only, as their website claims “no motors, just sweat”. Zoé’s aunt and her two friends had no special training when they signed up, just the will to be part of an incredible adventure that also might lead to some funds being raised that they could give to childhood cancer research. They named their team: Sun à ma Zoé. sazcanoe

In order to get ready for this event, Sophie, Patricia and Sarah spent the year training for all the different daily challenges they would encounter:  they entered 10 races of various lengths, and types, including a biathlon and a bike race. They also had to learn and become very good at mountain biking, canoeing, archery, rock climbing, weight lifting, and orienteering races, some of which they had never tried before. They dealt with bruises and black eyes, injured arms and sprained ankles. They persisted, and the money started flowing in. Sponsors got interested in supporting the team.  People signed up to follow their adventures on their website and their facebook page.

A few weeks after our marathing, they flew off to Mauritius. We all watched from a distance, tuning into their website to let us know how they were doing.  In a way, they carried not only our hopes for a cure, but also our dreams of adventure. The video that sums up the event is an amazing compilation.

sazrope

 

sazrun

sazswim

 

 

 

I like the Ethiopian saying “When spider webs unite, they can tie up a lion”. In this case, the lion is cancer.  OK yeah, I guess that makes us all spiders, which is kind of creepy, but my point is, all of us working together can actually make a true difference. Childhood cancer research is still hugely underfunded. Families confronted with a child’s cancer diagnosis have major problems to overcome, not just the cancer and treatment: unpaid time off work or job loss, childcare  and help for the other kids, juggling all the everyday concerns while also rushing back and forth to the hospital, many times in an emergency. The 80% cure rate we hear about sounds great until it’s your kid and you realize that what that means is that out of every 5 kids diagnosed, one doesn’t make it. For those who survive, 2/3 will face permanent and serious side effects of treatment. There’s so much more we the little spiders need to do.

On January 18th 2013 the Sun à ma Zoé team presented a cheque to Zoé and Elliot’s oncologist, Dr. Beck, who is also the president of the foundation FORCE, dedicated to childhood cancer research projects. The team had hoped to raise 10,000chf, but were unsure whether the support and public interest would be there. The total amount raised? 23,225chf! An incredible achievement by three women who dared to take on a challenge.

Cheque2

 

What new adventure is waiting for us just around the corner? Will Zoé’s mom and I decide to climb Mount Everest to raise money and awareness? (She is rolling on the floor laughing after reading that.The odds of seeing the two of us anywhere near such a huge challenge are about the same odds of a scintigraphy machine showing a false-positive… Hey, wait a minute…)

Calendar of Hope Raises Over 16,000 francs!

The Calendar of Hope

The Calendar of Hope

 

The Calendar of Hope has raised over 16,000 francs! The money will be given to the two chosen charities ARFEC and FORCE tomorrow, February 15th, the International Day of Childhood Cancer Awareness. Here is a little video which I made to commemorate the making of the calendar: http://www.youtube.com/watch?v=nXMlzFpM0AQ

Advice to the Newbies

 

newbie

Don’t you wish someone had been there at the beginning to give you some straightforward advice on what you were going to be dealing with ? On what to do? What to expect? Kind of a “what to expect when you’re expecting cancer” kind of book? Well, here is my list of pearls of wisdom, and I call on all my other cancer friends out there to add to it, share their experience to help the newbies entering this world… Please add your comments at the end.

 

  1. First, cry. Then get up, and get strong. Being strong might mean you just get through the day. You have no other choice. Get to work on your new life goal: Cancer Fighter.
  2. Accept any help you are offered (if it truly helps). The help must be no-strings-attached and guilt free.
  3. Speak up. Ask questions. If you don’t understand, ask again. Don’t be afraid of doctors, nurses, technicians, anesthesiologists or hospital clowns. They are there to try and cure this cancer. You deserve to know what’s going on, and to have an active role in it.
  4. Get copies of all the paperwork. Every scan, every test result, every protocol. Write down what your doctor says.
  5. Cry again. Then get back on your feet, get strong, and get back to work.
  6. Not everyone is like me, but I needed to understand as much as possible about the cancer we were dealing with. I wanted to know the treatment plan in detail, the drug names, the side effects.
  7. Accept that your schedule has now become completely unpredictable. This is one of the hardest things to deal with at first. Plans will change. A lot. The treatment dates will change. Your other appointments will have to change to fit. Very few things will remain on a predictable course the way they did before. Go with the flow.  This is a lot easier said than done, I know, but what I’m getting at is: you don’t have a choice. So let go of worrying about controlling the plan.
  8. Take a good long look at your life, and start to eliminate all the extra negatives that are dragging you down. Negative people, negative situations, negative habits. You no longer have any time for this.
  9. Replace the negatives with positives. Encourage positive friendships, people who make you feel good about life. Participate in uplifting activities, from exercise to talking on the phone with a good friend, to girl’s night out, to a romantic dinner for two.
  10. Learn to notice the difference between what matters and what doesn’t. For real. Like, before all this: it rains as you run for the bus and you miss it, and show up at work late with ridiculous hair. Versus now: it rains as you head to the hospital for a scan that will tell you whether the treatment is working or not. The last white blood cell count report was ridiculously low. There are 20 steps from the parking lot to the hospital door and you’ve forgotten an umbrella. Hair is not an issue, as it is non-existent. A man offers to walk with you under his umbrella. This matters.
  11. You guessed it, cry again.  You’re entitled, and if you hold it in, it will be the volcano that explodes when least expected. Then, get up, get strong… You know the routine.
  12. During the hardest moments of treatment, take it one day at a time. This means that you actually just focus on what is going on that day. Take it one hour at a time if necessary. Don’t plan too much for next Friday when you’re still trying to make it through today.
  13. Make a very, very short list of priorities. Something like, rest, nutrition, family, and then, work (yes, you still need financial stability, especially now. But work will come after health for quite a while, and rightly so.)
  14. Once you have the time and energy, make sure you have at least one activity that has nothing to do with cancer. You can’t live in that world all the time. I don’t mean you have to join a weekly Tae Kwon Do class or start Norwegian language lessons, just one thing, on a regular basis, that has nothing to do with cancer.
  15. Don’t dwell too much on how people (friends and family especially) are behaving. You will be surprised at who comes through for you, and who doesn’t. People will show up to help when you had no expectations of them. Others will disappear, much to your surprise and chagrin. Don’t hold it against them too much. People all react in different ways to difficult life events.
  16. Celebrate every victory.
  17. This time, instead of crying, laugh. Laugh and laugh, until you cry. Preferably not alone, as by now I hope you have learned to surround yourself with positive people. Then, get up, get strong…

Fun and productive things to do while waiting in the hospital.

I have a friend right now who is at her son’s bedside in the hospital, an unplanned vacation from the real world which happens so frequently in the life of a cancer mom (or cancer dad of course). It made me think about all the long hours, days and nights we spent in the hospital with Elliot, waiting, pacing up and down the halls, sitting by the bed, waiting, going down to the coffee shop to get coffee to bring back up, waiting, chatting with other parents or nurses, waiting, trying to get our child to cooperate with the nurse or doctor, eating cold meals or warmish sandwiches, waiting, holding our child down while the nurse or doctor does whatever it is they need to do, waiting, texting friends or anyone who might possibly be awake at 3am, and of course, waiting.

And so, I have come up with a creative list of fun things to do while waiting in the hospital. As I’m sure many of my other cancer mom friends (and cancer dads!!) will have suggestions, please feel free to comment at the end.

Good times…

 

  1. Wait. (Just in case you hadn’t thought of that)
  2. Read the same paragraph in your book over and over since you will be interrupted by your child, the nurse, a clown, the doctor or some other important person roughly every 6 minutes.
  3. Polish your finger and toe nails. Since you will not have any nailpolish, use a q tip and some of the yellow iodine tincture. It will look unique and clever.
  4. Make beautiful water fountain statue out of syringes, I.V. tubes, and bedpans.
  5. Take a plastic cup and write “Urine Sample” on it. Then pour some apple juice in it and secretly place it on the nurses’ desk.  Hours of entertainment while you watch them try to figure it out.
  6. Place a bunch of pillows on a wheel chair in the shape of a person, then cover with a blanket.  Leave a little note pinned to the blanket saying “do not wake!” Then put the wheelchair in the elevator. Bet with the other moms and dads how long it will take till someone does something.
  7. Steal as many toothpicks from the cafeteria as possible and build a smaller scale version of the Eiffel Tower. Place it in the hospital lobby and watch as people admire your artwork.
  8. Start rumours about the hospital personnel. Make them as unlikely as possible, and tell only one person. Then see how many hours it takes till you hear the rumour again from someone else, and how much the rumour has changed from your original version.
  9. Pretend you are an interior designer with unlimited budget, and plan what changes you would make to the department you’re in.
  10. Write a letter to your health minister outlining the improvements you feel are necessary in the lives of hospital patients and families. Since you will probably not have thought to bring paper and pens, use toilet paper to write on and a syringe filled tomato soup as your pen.
  11. When the head doctor comes in with some students, quickly give your child a metal bedpan and some spoons. Secretly tell your kid the doctors enjoy drum concerts while they talk.
  12. If your child is going to receive dexamethasone or other steroids, just before the treatment make sure to watch the movie “The Exorcist” especially the scene where the girl’s head spins around. You will be better prepared although you may look back on the movie with thoughts that the girl was in fact quite cute and innocent looking in that scene, compared to your own kid now…
  13. If there is a suggestion box in the hospital cafeteria, write “cocktail hour” on several notes to fill it.
  14. If you have been awake for more than 36 hours and your child is so bored he is driving you crazy, it is official hospital policy that you can push the nurses’ call-button as many times as you want, even if you can’t remember what you needed by the time she gets there.
  15. Since your child is not in school you need to supplement his education. One science project is to use several sugar packets from the cafeteria and mix them with whatever liquids are on the meal tray until they form a paste. Then, your child can wash the windows using that, and see which combinations clean best. It’s all in the interest of education so it’s ok.
  16. Fill several hospital gloves with water and start a water balloon fight with the other kids. The nurses LOVE this.
  17. If the doctor or nurse comes while your child is in the bathroom, look all surprised and say “Oh I thought he was with YOU!”
  18. Make a list of all the things you will do when this phase of your life is over. It doesn’t matter how crazy or unlikely they are, just write them down. There is a life after this, and you have the right to dream big.

My Own Little Marathon of Hope

And so the day has come… Yes, you probably knew it would, but it is still a shock to me… So here it is.. I have signed up to participate in… a marathon ! ACK!!! I know what you are thinking… Nicole, you do realize this involves… well exercise???

Yes I do.

Nicole, you repeat (I actually can hear you), you do realize this involves, strenuous exercise, like including the possibility of sweating and gasping for breaths?

Yes, I repeat stoically, I do.

Like, in nature? You continue, in awe at my resilience. Outside?  Braving the possible severe weather conditions and wild animals?

Yes, I say again, my head held high. I will do it for The Cause.

Hey wait a minute. What wild animals? Nature? Who said anything about nature? Oh yeah, they did have a picture of the marathon course on the website and it did look like, well, a narrow trail through the forest with potential hills and valleys…

ACK!!!!! What am I, crazy?

Well yes, maybe I am. But I’m doing it, the FORCEthon, an 11 kilometer marathon organized by the foundation FORCE, our local childhood cancer research and advocacy foundation. (http://www.force-fondation.ch/)

Because all the proceeds my humble run/hike/crawl through the woods, over the hills and valleys, warding off wild beasts etc, go to fund the research that is desperately needed to cure some of the kids Elliot and I have met along our cancer journey.

Hey, don’t look so worried! I can do this! It’s only 11 kilometers, how bad can that be? (What? You say that’s almost 7 miles??? Are you freaking serious???!!!)

I’m Canadian, you forget. We have Terry Fox as a role model, how can we not be moved to reach for the stars when we have a true Canadian hero to guide us?

For those who don’t know him, here is a bit of Canadian history.

Ever wonder where the idea to do a marathon for cancer comes from?

In 1977 Terry Fox was a normal, active 19 year old Canadian kid when a worsening pain in his knee sent him to the doctor. The diagnosis would change his life, his family’s and eventually all of us: osteosarcoma, a serious type of bone cancer.

His leg was amputated. He went through 16 months of intense chemotherapy and was told his chances were 50%.  His hospital experiences had made him angry at how little money was dedicated to cancer research, he watched as others around him lost hope and lost their battles.

One person can make a difference

Terry didn’t give up hope. Although he had an artificial leg which made him run with an unusual gait (find me one Canadian who doesn’t know exactly what he looked like as he ran, I dare you) he decided to embark on an ambitious adventure. A crazy adventure. And adventure that would have him braving the elements and the forces of nature (that’s the Newfies), facing wild beasts (that’s the Quebec drivers), and all kinds of weather.

Terry decided to do a marathon on his own, all by himself, and asked each Canadian to give him a dollar, that he would donate to fund cancer research. Just one dollar. If each of the 24 million Canadians were willing to give just one dollar, he figured, think how much could happen in cancer research.

But the marathon had to be big. It had to be long, like, really long, eh? (Just threw that in for some Canadian authenticity).

So he decided to run across Canada.

Yep, that’s right. 8000 kilometers. That’s five THOUSAND miles. Makes my little 11 k seem pretty pathetic actually. And I have both legs! For my Swiss friends, to give you an idea of how big Canada is, you could actually plop all of Switzerland into one the lakes just to right of the middle of the country, like Lake Huron for example, and it would fit easily (might stick out the top though, not sure about those alps).

So he started by dipping his artificial leg in the Atlantic ocean off Newfoundland and set off down the road. On his first few days he encountered gale force winds, heavy rain and a snowstorm. At first, not too many people were interested, but by the time he got to the other side of Newfoundland, people started paying attention. One town, Port-O-Basque, met him with a cheque for 10,000$, donations from each of the town’s 10,000 residents.  By the time he made it to Toronto, which took three months, everyone knew who Terry Fox was. Some corporations got the idea to sponsor him for each mile he ran (catchy idea!) People lined the road to watch him as he jogged past.

He had met the Prime Minister, had rallied Canadians to a cause, had made us believe any of us really could make a difference if we wanted.

He made it more than halfway across Canada, 5300 kilometers during 143 days. Then something happened… fatigue. By late August he was exhausted before he began his day’s run. On September 1, outside of Thunder Bay, he was forced to stop briefly after he suffered an intense coughing fit and experienced pains in his chest. Unsure what to do, he resumed running as the crowds along the highway shouted out their encouragement. A few miles later, short of breath and with continued chest pain, he asked to be driven a hospital.

The cancer was back.

Terry didn’t finish his run. But people everywhere continued to donate, and before the cancer took his life the goal of 1$ for each Canadian had been reached.

I was 12 years old when Terry did his run. I remember the excitement. The energy that people felt at the thought that we could make a difference. Only a few short years later, cancer took my grandmother. There was still so little known, so few advances. But as more money started pouring in, as more marathons took place all over the world (the Terry Fox Marathon of Hope is run in over 60 countries now), research did advance. My mom was diagnosed with advanced stage cancer less than 20 years after Terry died, and because of a brand new cancer drug, she’s still with us today.

I am in no way saying I am as glamorous, heroic or well, in athletic shape as Terry Fox. But his message is clear: we can each do our part. So off I go on November 10th to do mine.  It’s only 11 k, how bad can it be? Besides, they have rest stops along the way where they serve water and juice… I wonder what the odds are of a glass of wine?

And YES! You can sponsor me! An amount per kilometer (don’t worry, the maximum is 11km, so there’s not too much risk of breaking the bank! Breaking my back though…) or an amount just to do the run.

Imagine if everyone in Switzerland gave just 1 franc?

Email me directly at Nicole@scobie.ch if you would like to sponsor me. Or donate directly to my postal account CPP 30-604575-9 (this account is solely used for fundraising). All proceeds will go directly to FORCE foundation (http://www.force-fondation.ch/).

If you would like to join me on that day, you can still sign up too, on FORCE’s website!

Feelings

How are you feeling?

I get that question a lot. How do you feel? How are you doing? How are you holding up?

It’s comforting to know that people care. But it’s also so hard to answer. The emotional range inside me can be quite vast. Sometimes I’m not even sure how I feel.

I don’t think I will ever go back to how I felt “before”. That’s because even when things are looking really good for Elliot, really quite optimistic, there is one feeling I can’t seem to get back: feeling carefree. That feeling has left the building.

There’s one feeling that is constant, that I think many cancer world inhabitants can relate to. Sometimes just a faint whisper of it in the background of your mind, other times a huge roar overwhelming you. I can’t quite name it, it’s not something I felt before this. But the best description is that’s it’s a cross between anger and fear. Those two feelings combine to make one overpowering feeling… Shall we call it Fanger?

And it’s not just plain anger and fear, but outright rage and overwhelming terror, all rolled into one emotion.  That’s Fanger.

It’s what you feel when you think about the Whys. And the What Ifs. It goes quite well with a nice serving of the phrase “It’s not fair.” (Add whatever extra words in that sentence you deem necessary).

Another strange feeling I have felt since beginning this cancer journey is called Wope. It’s a combination of Hope and Worry. It feels like juggling ten sharp swords while riding a unicycle on a tightrope which is maybe hanging over a net… Nobody really wants to be around you when you’re feeling Wope so it’s best to keep it to yourself.

Oh and then there’s that lovely feeling Anxhaustion, the overwhelming anxiety mixed up with absolute exhaustion, which is encountered usually about three hours before you can possibly go to bed, and often being especially high on the days before a scan or MRI.  Anyone messes with a person feeling Anxhaustion is likely to get their head bit off.

Oh but wait, one of my favorites is Imdreadcipation, isn’t it yours too? That wonderful cocktail of impatience, dread and anticipation you feel while waiting for the test results, waiting to see the oncologist, waiting to get the chemo, waiting to have a scan, waiting, waiting, waiting…

Then again there’s that occasional bout of Nervanity, that combo of nervousness and insanity that often strikes suddenly, like right after your child has knocked over the tray of medicine in his struggle to get away from the nurse and you have to start the whole procedure over, and you are overcome with completely inappropriate laughter.

And let’s not forget Sorryuckyourself, often felt when people stare at you when you’re out in public. I’ve felt it when stopping quickly for groceries at the store after a chemo day and Elliot has an “I want a toy” tantrum. It’s a mix of feeling sorry for yourself and feeling like telling people exactly what they can do with their parenting advice.

But the very best, I guess, is Grelief, the mix of relief when you finally get good results and grief at the knowledge that your life will never be the same again.

Worry

The subject of worrying is one that comes up frequently in my mind. I often have little debates with myself about my worries; in fact sometimes the little debates turn into outright arguments… How dare you think of this worry again?!?! We just spent the whole afternoon yesterday going over this! Remember? We looked in the mirror and told her to cut it out, it was senseless! Did you not listen?

The thing is, I can worry about almost anything. There is a part of me (that alternate person inside) who comes up with stuff you would not imagine. My husband likes to say I would not want to miss out on any opportunity for a good worry. He’s kind of right, the worrier in me loves to get her teeth into a real good worry bone and gnaw at it for hours, while the other, more sensible me is the one trying to grab the bone away and toss it into the garbage. It’s a dangerous battle.

About a month ago, I noticed that Elliot was sweating while he slept. His new little wisps of hair were all damp and there was a damp spot on the pillow.

Panic.

If you google “child cancer” and “night sweating”, you will immediately find out that these two subjects are inexorably linked like salt and pepper, like peanut butter and jam, like backflips and Jesse. It’s basically a clear cut case: bad, bad news.

I worried at it the entire next day, occasionally being distracted while playing with Elliot who was running around being silly, or by making him another meal or snack since he is eating all the time.  I returned to my laptop several times in between taking care of my active, energetic boy to google alternate variations of the same thing: “sweat” and “wilms tumour”, or “sweating” and “cancer recurrence”. The prognostic was always just as terrible.

Finally I have the courage (and time) to tell my husband late that evening. His reply: “He’s always been like that, hasn’t he?”

I think it over.

Yes, actually, it does seem that he often has been kind of a sweaty kid.

In fact, I remember some photos of a trip we took a few years ago, and his hair is all damp.

So maybe?… Just maybe… It’s NOT a sign of recurrence?

Staring to feel a bit of relief. A bit of light is shining into my dark tunnel of despair.

For about an hour, the worry subsides. Then…

“BUT WAIT!” yells the other voice inside my head.

“What?” I answer cautiously, unsure I want to hear the answer.

“Sure, he’s always been like that, but HE ALWAYS HAD CANCER!!!”

“Wait a minute.” I reply, trying to quell the rising fear. “He didn’t ALWAYS have cancer. We don’t know how long it was there before it was discovered. “

“That’s right” says the voice, now filling me with cold dread. “YOU DON’T KNOW!!”

So I google everything I can think of to try to determine how long the cancer was likely there before it was diagnosed, and cannot find any definite answer. I basically find every possibility from the option that it started to grow only a couple months before being found, to the possibility that it was already in the works when my husband and I went on our first date.

To the worrier in me, this means I have to keep worrying. Until I have a definite answer, the worry cannot be shut down.

At one point I get exhausted and somehow manage to stop thinking about it.

The next day at work, my worries are back at full force.

A good friend and I are sitting in the break room chatting. She knows me well enough to know when I’m not ok. So she asks. So I tell her all about it. About the Terrible Night Sweating Symptom.

She doesn’t even miss a beat. “Nicole.” She says, and waves her hand toward the window, where the sun is blindingly bright on the hot pavement. “ It’s 36 degrees out. Of course he’s sweating. We’re all sweating.” She smiles kindly, but also looks like she knows I’m slightly insane. (This is the beauty of my friendships, they like me anyway.)

I stare at her for a while, the madwoman in me trying to come up with a plausible counter argument.

“But he didn’t sweat like this while he was getting chemo.”

“It was winter.”

“Yeah, I guess you’re right…” The worrier in me is unconvinced but has basically run out of arguments. The strong, brave, self-confident me starts to re-emerge.

“Of course, you’re right. What was I thinking?” I say, relief starting to flow back into me like light into my dark tunnel of despair. (It’s a bit of a merry-go-round in here.)

Now I’m feeling silly. I actually indulged this worry for two days!

“You know”, I add, he’s eating well and has tons of energy, and loves school…” My friend is smiling, she has won this battle.

I think of Elliot at school. Then a thought. Just a glimmer, at first, then it works its way into the front of my mind… The other day at school I was watching him running around outside during recess and I noticed that he doesn’t run as fast as most of the other kids!

Panic!

I mention this as casually as possible to my friend.

“He’s been basically inactive for a year.” She says. “And didn’t you say one of the chemo drugs affects his nerves and reflexes and that it would take time to recover?”

I am hearing her, but the other part of me is aching to get on the computer and google “cancer recurrence” and “running speed”… Or maybe “wilms tumour” and “how-fast-do-normal-kids-run”… or maybe…

So here’s the thing. I have decided to put a stop once and for all to these paralyzing worries. I have come up with A Strategy.

The basic concept is this: when I worry, I will classify my worries into one of two categories: productive or un-productive.  The productive category  includes worries that actually can lead to some kind of action: for example, I’m driving and am worried I might run out of gas since the light is blinking, so I drive to a gas station. (This, by the way, rarely happens as Martin seems to have this worry so overwhelmingly under control that our cars are almost never below ¼. Isn’t he great? Or maybe he knows that I am strangely unafraid to take a chance with it, telling myself that “it’s downhill most of the way”?)

The unproductive category would be things that are un-solvable, things that just cause me to continue to analyze, research and ruminate over them without any solution or action being possible. For example, when I consider the possibility that the team of oncologists and specialists overseeing Elliot’s case might, during their weekly patient review meetings, be laughing and tossing the dice to determine which chemo to give Elliot this week.  It is, after all, not much use to worry about whether the last oncologist we saw, who has over 30 years of experience in this field, might not quite have as much information about Elliot’s cancer as my google searches have given me. At some point, I just have to decide to trust these guys. Trust them with my little boy’s life.

So there you have it: my Anti-Worry Strategy. I’ll let you know how it goes.  Perhaps as an additional tactic I should get google to ban me from too many searches, the way casinos ban gambling addicts?

Friendship

Lately the cancer world has me pondering the importance of friendships. What would we do without friends? Women, especially, needs their gal pals. In fact, recently on facebook a post went around about a study that was done that determined the best thing a man can do for his health is to marry a woman, whereas the best thing a woman can for her health is to nurture her friendships with other women.

It’s just so true.

A friend can be there to support me through the difficult moments of Elliot’s diagnosis and treatment, even if her children have never had cancer. She “gets it”. It doesn’t matter that it’s not her child, she actually feels the fear and anxiety I feel. How do women do it? We take on all the pain and suffering of those around us. When someone we care about hurts, we hurt too. Men are better at compartmentalizing their lives, at separating their emotions from their actions.

I was chatting recently with a mom, whose son had cancer years ago and is now considered “cured” (apparently you can only say “cured” with quotation marks, because there is never a real guarantee. Darn it, and here I was hoping for some kind of official He Is Cured document from the hospital at some point!) She mentioned that someone had recently told her that she should now “shut the door” on cancer, that it’s part of the past and it’s time to move on to thinking about new things.

We stared at each other a bit after she said that. Then she said it would be pretty hard to do as she had just signed up for a two-year term working with a children’s cancer group.

We laughed.

The thing is, there’s no door to shut.

Being a cancer mom isn’t a choice, and it’s (unfortunately) not a temporary role. Nobody enters the cancer wold willingly, but once you’re there, you don’t have much of a choice. You adapt. Even my friends whose kids don’t have cancer have been dragged into this world with me, sure, not as intensely as I have, but whether they like it or not, they can now chat easily about blood cell levels and remission and chemotherapy side effects and vomit stain removal and needles and port-a-caths. And they can laugh at it all, and cry at it all, and while they laugh and cry they can also make supper and do two loads of laundry and find the missing lego piece and clean the living room and feed the cat and stop one child from hitting the other and text a friend and polish their toe nails. While they are doing all this the husband usually only has time to walk into the kitchen open a cupboard, stare into it’s depths for several minutes, then ask, “Where do we keep the salt?”.

Ok I don’t mean to insult the male population there, and I may be slightly exaggerating (my husband actually knows where the salt is!). But seriously folks, let’s take a few seconds here to applaud all the women out there, cancermoms and cancerfriends, who are going through this journey or have gone through it already.

I live in an all-male household. This has some advantages. I told Jesse the other day to take out the garbage, and he replied with some kind of grumble that sounded like “ok”. A friend of mine (male) with a teenage daughter recently told me he had asked his daughter to take out the garbage and the girl broke down crying, accused her dad of trying to ruin her life, and ran to her room, slamming the door. It turns out she had just done her hair and put on her new skirt which she had wanted to show her dad (which he failed to notice) and it was raining out, which, any woman would know, means there is no way the garbage is being taken out in these conditions and how dare you not notice my hair and outfit?!?!

Jesse took the garbage out without another word. He also did not bother to put on socks and shoes or a t-shirt. And it was raining out. When he came in I said,  “You”ll catch a cold going out like that!” and he grumbled something that sounded like “ok” and walked into the kitchen and ate an entire loaf of bread, jar of peanut butter and drank a liter of milk.

So there are advantages to the testosterone prominence in my home, and disadvantages. Sometimes, I miss having someone to talk things out with. There are occasions, during quiet moments, when I have said to my husband “So what do you want to talk about?” and he gets that slightly panicked look. Daniel comes home from school and I excitedly ask him how his day went, what did they do etc etc (It’s a new school year, I’m curious!) and he replies “it was very… school-ish.” and I don’t get much more than that…  I still recall noticing Jesse, around age 6, staring intensively out his bedroom window for a long thoughtful moment, and asking him what he was thinking about. He replied “Well, when I see a car, I think: ‘a car’. When I see a person, I think: ‘a person’.”

With my friends I can talk easily about all of life’s mysteries. The anxiety of worrying about a relapse. The ups and downs of every day life. The stress of juggling the kids’ back to school schedule. The joy of shoe shopping. The confusion of relationships.

There is a special bond between cancer friends too – we who have faced “the dragon” and felt its hot breath hovering over us (oh that was very descriptive, wasn’t it? Feels right, like we’re little knights in shining armour brandishing our swords above our heads, torn between fear and fury).

You would think a group of women bonded by cancer would be a sad, weeping lot, all of us sitting together in a semi-circle, sharing our sad tales over tea, a box of kleenex nearby being quickly used up. Well, so far, in my experience, it has been quite the contrary! Swap that tea for a good bottle of red wine and there we are, laughing our heads off as one mom tells the story of sneaking a pizza in to her daughter’s hospital room and being caught by a nurse. Keep the kleenex – we’re laughing so hard we’re crying.

Don’t get me wrong. Behind that pizza story is the very real image burned into our minds of the mom who has stayed by her child’s bedside for days, the i.v.s of chemotherapy and anti-cancer medicine hanging overhead, and then the anti-nausea medicine, the anti-pain medicine, the medicine that helps you get over your addiction to the anti-pain medicine, the medicine that helps you sleep, stay awake, poop, not poop, and of course the medicine to treat the side effects of all the medicine. The mom who is exhausted, hungry, scared, sad, and has decided that dammit, she’s having pizza with her kid. The mom who is overjoyed if her child is actually willing to eat one bite of food.

We don’t need her to explain all that because we’ve all lived it. What we need, mostly, is to laugh. And be together.

Because when the dragon rears its head and starts charging at you, and all you’ve got is your little sword, you need everyone else to show up with their little swords. One dragon against a whole bunch of sword carrying women (and a pizza) is all we need to keep fighting. And hopefully, most of the time, win the war.

I Choose This Child

Generally, I write when I’m feeling ok. By that I mean, although I might write about low moments, anxiety, fear etc, I am not feeling any of those feelings while I’m writing. Because when I do feel those feelings, I am frozen. Fear makes me freeze emotionally, and partly physically; I can’t get anything done, I just crawl through the day basically on auto-pilot. I’m not fun, I’m not funny, and I’m certainly not creative.

Also, I don’t want to write anything too depressing. I know what I write is some serious stuff, but I always manage to see the bright side, even sometimes the funny side. And let’s face it, in life, no matter what you’re going through, there are hilarious moments.

But every now and then it’s slightly different, and I do some writing to try to cheer myself up, because I’m feeling kind of low. A few days ago, I had one of those moments, and here’s what I wrote. I actually did feel better after, so maybe writing is the solution!

I’m alone in the living room. Elliot is asleep, Martin is on an evening shift at work, and the other two kids are away tonight.  I can’t watch TV, I can’t read a book, nothing seems to engage my mind anymore.  Today, September 7th, is the one year anniversary of Elliot’s diagnosis. And although I didn’t want to mark the day, to even remember it, it’s the first things I thought of when I woke up this morning.

So it’s quiet, and I’ll write. Let’s see if it works. You can be my psychoanalyst, and maybe by the end of our session here today, I will feel better. I hope you don’t charge too much.

So here goes.

What’s that? You want to know what’s got me down? I know, I know, I should be celebrating the fact that one year later, we still have our son, some people are not that lucky! He is in remission, he’s going to school, and other than a few remaining side effects, he is basically like any other child.

But no, instead I am feeling, well, pretty ungrateful. Ok, I might as well admit it (but only because you dragged it out of me, Doctor.), I’m ANGRY.

I have some new friends now, other moms with cancer kids. Some of them are waiting for results this week.  So I am waiting for them to get the results and to feel ok enough to let everyone else know. It’s stressful. I want the treatment to work for everyone.

I feel like getting angry at cancer. No I AM angry at cancer! How dare it?!? How could it?!? Why???

Why is it so unfair?

But speaking of unfair… A few months ago there was a horrific bus crash here in Switzerland, where many children were killed instantly. It was all people could talk about for days. The kids were coming home from a school trip. Some parents received letters from their child a week later, telling them about the trip. They had already buried their children when the letters arrived. How fair is that?

Ok well this session is not helping much, you are not a very good psychoanalyst, why did you make me think of an even worse scenario?!?!?

Were you hoping I would see that my case is “not so bad” comparatively? Were you thinking I would decide that I might as well take advantage of all the time I have with Elliot, while he is healthy and so am I, because we never know what could be just around the corner, cancer or otherwise?

Yeah, I see your point.  I also know, that no matter what happens, I would not choose another child over this one. He’s the one I want, cancer and all.

I wonder if my health insurance will cover this therapy session. It seems to have worked.

I think I’ll go look at Elliot  while he’s sleeping now. Goodnight.

 

With his polar bear, of course…