Category Archives: family

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

13 Dec

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.

  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.
Posted in cancer, family, funny moments, hospital | Tagged | 4 Comments

Friendship

1 Oct

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 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, who’s 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 otherwise 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 then 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 being 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 it’s 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.

Posted in cancer, family, funny moments, hospital, kids | Tagged , , | 1 Comment

Advice to Adults with Cancer from a Five Year Old

18 Sep

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!

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.

Posted in cancer, family, funny moments, kids | Tagged , , | 2 Comments

Parenting Through Cancer

31 Aug

Here’s  an exact, unedited copy of a text message I received at work from my husband the other morning about how my older kids spent their evening the night before: “Apparently Daniel, Jesse and his friend stayed up really late, playing dare. So Jesse has no longer any eye brows. Daniel took a shower with his clothes on and the other dude ate a banana peel and drank tabasco right from the bottle… Daniel is up and told me…”

I laughed so hard I almost couldn’t talk for a few minutes.

The thing is, at our place, we cut the wifi internet at midnight. The theory is that reasonable people should be going to bed at that time. What really happens is that they generally find other things to do to entertain themselves. This is fine, it’s good clean fun, right? They play board games and cards, talk, sit around the kitchen table eating snacks, and generally have a great time together instead of being in their own separate bedrooms staring at a screen, sending messages to friends saying “whatcha doing?” and getting the reply “not much, you?” from everyone.  So we feel it’s a good rule. Besides, now that school has started, fatigue creeps up on them a bit earlier and they actually do go to bed at a, uh, more or less reasonable time.

But here’s the thing: it’s actually way way WAY harder to parent this way. The kids don’t realize this. They think we are chuckling to ourselves in bed as we turn off the internet, enjoying the torture we put them through by cutting them off from the joys of youtube and facebook.

The truth is that it would be roughly one million times easier to just leave the internet on and let them sit like quiet zombies in their rooms.

They would make less noise while we sleep.

They would eat less food and leave fewer crumbs on the counters.

They would quit complaining that we are the only parents in the world who inflict such cruel and unusual punishment on their innocent kids.

They would still have eyebrows.

But no, we are mean parents, and so they are left with little choice but to drink tabasco.

Parenting is hard enough under normal circumstances (sidebar here, are there actually any “normal” parenting circumstances? It seems to me, in my parenting career, which spans almost 21 years (ack!) that the normal periods have been almost non-existent. But I digress.) So what happens when the circumstances change, when an unwelcome guest named cancer arrives in your home, when life is turned upside down and you struggle to get yourself through the day, let alone try to impart some parenting wisdom on your kids? When life becomes a matter of survival, all the rules go right out the window.

Back when Elliot was going through chemo treatment (love the fact that I can say “back when”… it’s really not so long ago!), we were happy when he ate, never mind any nutrition rules.  Jesse and Daniel never said a word about it, but I am sure they would come out into the living room for lunch and see Elliot sitting in front of the TV eating a popsicle and think “And we were forced to eat broccoli???”

Not only was it difficult to maintain many of my old parenting expectations with Elliot, but also with the older two. I was just so tired.  My kids are expert debaters. Seriously, they should be on some kind of debating team, maybe turn this skill into a future in conflict resolution. I’m pretty sure they would wear down even the worst of the tyrants and bullies out there, if given the chance to have a long conversation with them. The dictator would probably just give up, pack up all his silly guns up in frustration, yell “Fine! Fine!  Have democracy! Just stop talking!” and go home. And Elliot is learning this skill too, although he is still in the phase where he just repeats the same thing over and over five million times hoping we’ll crack. So this tactic combined with parenting fatigue can put me over the edge.

So what’s the solution? I think what worked for us was, we chose a few important rules to maintain while going through the cancer treatment, and let the rest go. Elliot could eat whatever he wanted, whenever he wanted, wherever he wanted. But other than popsicles, we didn’t buy junk food.  So his choices were usually more or less healthy, even if they were often at strange times.

My favourite super hero

Finding time together was also an issue, mostly for the older boys. Jesse and Daniel spent way too much time without us, especially when we had overnights at the hospital. But we countered that by planning ahead for weeks when we would all be home, and scheduling movie marathons where we would watch a movie in a series every night after Elliot was in bed, just the four of us together. So we’ve recently had a Harry Potter marathon, a Comedy Night marathon (everyone from Michael Macintyre, Eddy Izzard, Dara O’Briain, to Louis CK and Patton Oswald) and now we’re in the middle of an Avengers series.  I’ve basically seen lots of action or crude humour movies this past year, and I can now tell you lots about superheroes (my favourite seems to be the Hulk, which probably says a lot about my choice in men). I am quite familiar with the funniest moments in each Die Hard movie, and have taken part in a debate about whether the next marathon should involve Lethal Weapon , Tron, or Batman. Strangely enough no one is jumping at my idea of historical dramas or romantic comedies. That’s what you get for living in an all-male household.

The point of the movie marathons was togetherness. A shared moment when you come together, even if it’s just to sit next to each other and laugh. And actually, that’s what good parenting comes down to, isn’t it?

By the way, Elliot’s hair has grown in now and he looks just like any other little boy with a crew cut. Jesse’s eyebrows, on the other hand…

Any advice for parenting through cancer? Opinions? What worked for you?

Posted in Uncategorized, cancer, family, kids | Tagged , , | 1 Comment

A Week on the Roller Coaster

22 Jul

I have so little free time these days that I have started writing several times, and not had time to finish. So here are a few tidbits from the past week, a glimpse into my life as a cancer-mom, written on the run as I juggle parenting three kids, working, spending time with my out of town guests, and anxiously awaiting Elliot’s CT scan results this week…

Monday.

Here in Opposite World, the situation is as follows :

My son, age 5, stage 4 cancer of the kidney, having had surgery, radiotherapy and 10 months of chemotherapy, is jumping on the sofa, bouncing off the walls and saying he wants to go outside to play.

My mom, age mumble mumble, stage 4 cancer of the small intestine (GIST), two surgeries and 11 years on targeted therapy anti cancer drugs, and just flew 4000 miles a few days ago to visit me, time zone difference: 6 hours, has just finished checking facebook and her emails, playing with Elliot, doing laundry and is saying she wants to go outside to play (play=shopping).

Me: age a couple decades less than mumble mumble, stage 4 lack of coffee, no surgeries ever although I did give birth three times in my life so that should count, no chemotherapy although am sure I suffer from chemo brain by osmosis, no radiotherapy, ok there’s simply nothing medically wrong with me but I’m exhausted!!!

Seriously, somebody told these cancer people to “seize the day” and they are! If any more day-seizing happens around here I’m going to have to start mainlining coffee.

Tuesday

I have a day off from work, and Martin too! We usually work opposite shifts, so that someone is always there for Elliot. But this has not allowed me to spend much time with my mom and sister since their arrival, without Elliot along. Shopping with Elliot is…uh… challenging. Imagine bringing a talking kangaroo along into a changing room as you try on a new dress. You know, one of those changing rooms where it’s just a curtain that separates you from the rest of the world? You get the picture.

So today Martin will stay home with Elliot while my mom, Julie and I head off on an adventure! We are driving to Montreux, about 45 minutes away.

The weather is perfect. The drive is amazing, the highway is perched of the edge of rolling cliffs covered in vines that cascade steeply down to the lake. The sharp sunshine reflects off the water and highlights the towering mountains on the other side. In Montreux we park and stroll along the quiet waterfront which is still recovering from last week’s jazz festival. I can almost see the smoke on the water. This is where the Rich and Famous live. Shania Twain owns a castle somewhere nearby apparently. The sun shines and I feel, for a brief moment, that I’ve escaped the cancer world. There is a lingering stress that I can’t shake though. Tomorrow we get the results from Elliot’s end-of-treatment CT scan, and although we’ve been told it should be ok, there is always that lingering “what-if”. Cancer is an unpredictable enemy.

I find the perfect dress. There is a minor problem in that the price has one more zero on it than I would like. Oh well, I leave it for Shania.

Wednesday

We’re at the hospital, in the waiting room. I dropped my mom and Julie at the airport a few hours earlier, heading home. They are somewhere over the Atlantic right now. Elliot is playing with a toy. Martin is looking at his phone. I am pacing. The stress has formed a hard lump in my stomach. I can hear my heart beating in my ears, and am trying to control my breathing by taking deep, slow breaths. I feel like I might cry at any moment, even though nothing bad has happened… yet. This moment marks the culmination of ten months of anxiety, ever since this all began.

The nurse comes and tells us we can wait in the doctor’s office. I analyze her face. Does she look calm? Anxious? Upset? Pitying? Sad? Glad? I can’t tell. SHE knows the scan results. I almost feel like begging her just to tell me. But I’m too afraid of the answer.

We sit at the doctor’s desk, waiting for him to come in. Elliot is on Martin’s lap, playing with his toy. I have my notebook out with my list of questions. My hand holds the pen, and is damp with sweat. I feel cold.

The nurse comes in and sits at a chair by the side, also with a notebook and pen, ready to take notes during the meeting. Is this a good sign? A bad sign? Any kind of sign?

The doctor comes in. He’s holding Elliot’s file. He sits opposite us, says hello, and smiles.

The smile says it all. I know it’s going to be good. I feel the stress leave my body like steam out a boiling kettle.

The scan is clear. Of the “innumerable” lung metastases at the beginning (yep, that means, too many to actually count) there is not a trace left. Elliot is definitely in remission and the treatment is finished. We can leave and only come back in three months for the next scan. I think about my mom who has gone through the three month scans for 11 years. We walk out of the hospital quickly, not looking back, almost hurrying like kids leaving school early, afraid to get caught and called back in.

Thursday

I’m at work, early shift. All my co-workers know about yesterday’s scan. They keep coming up to me to congratulate me. They look as relieved as I feel. I think about how cancer affects everyone, not just the one with the diagnosis. It must be so hard to just sit on the sidelines and not be able to do anything. And some have silently fought their own battles, watched their own family or close friends go through this. You only find out about this after you enter the cancer world.

I feel a freedom I haven’t felt in months. Well, 10 months and 10 days, to be precise, since Elliot was diagnosed. It’s like nothing can get me down today, nothing can go wrong, I’m riding around on a cloud.

Work is busy, but fun. One of those days where time flies.

After work I take Elliot, my teenager Daniel, his girlfriend and her mom out to a movie. It’s Elliot’s first time at a cinema. He loves it but talks and laughs loudly during the movie. It doesn’t bother me because that’s what the other young kids are doing too. We’re normal!

We decide to go out for supper, and get home around 8pm, already bedtime for Elliot. Exhaustion is silently creeping up on me. As I unlock the door to our apartment I hear the music blasting from Jesse’s room (oldest son, age 20). He’s in there hanging out with a couple friends. I stomp in to his room and pull the plug from the wall. Three sets of surprised eyes stare at me. I stomp away. Fatigue comes crashing down on me, and an overwhelming irritation, which is completely illogical, I tell myself, given the circumstances. I get Elliot ready for bed impatiently. Jesse and his friends quietly leave, Jesse quickly saying goodbye while staring at me like I’ve grown a second head.

I read Elliot two bedtime stories, both of which I find extremely annoying. I am angry at princes and dragons.

Elliot wants an extra cuddle before falling asleep and complains that his dad is not there (Martin has the late shift at work).

I fall asleep first, I think.

Friday

Even earlier morning shift. Driving to work when it is still dark out on a summer day. The highway in to Geneva passes the Paléo festival site, a huge outdoor week-long music festival with thousands of tents set up for the fans who stay all week. Three young men have climbed to the top of the fence that separates the camp ground from the highway and are hanging there, waving at the few passing cars, laughing. I try to see if any of them is Jesse, but am pretty sure none of them are. Who knows.  I am starting my morning and they are ending their evening. Time is strange.

I get home from work at 2pm, enough time to have an hour with Martin before he leaves for work. He looks exhausted. Elliot woke up at 610am. Martin worked till 11pm last night, and will again tonight. He drops a fork on the floor and actually growls at it. Elliot and I look at him like he’s grown a second head.

Elliot complains again at bedtime that his dad is not there, but then I remind him that after today is vacation, we have three weeks off work, and we will be together every day. He asks if three weeks is kind of the same as a million days. I say yes.

Now our home is quiet. Daniel is out with his girlfriend. Jesse is still out. Oh, don’t worry, he’ll come home at some point. I used to worry about Jesse a lot, but he’s ok. Oh sure, he’s probably out there doing backflips off of tall structures but hey, it’s not cancer, right? Sigh. Jesse has become one of the best Traceurs in the world. Don’t know what a Traceur is? Check  this out, and then tell me if you thought I already had enough stress with Elliot! And Daniel is doing this too, he’s quite amazing as well. Why couldn’t they all have taken up the violin? Ok I admit, the truth is, I’m totally impressed with my kids.

While the house is quiet, I do a bit of travel planning. Since we couldn’t plan anything ahead of time, we have decided to drive to Paris and spend a few days there, and then on a beach in Normandy. We have not gone away on vacation for a year. I am so excited about this trip! I almost wish I had bought the Montreux dress, so I could walk around in Paris looking fabulous and sophisticated.

Elliot’s main interest in Paris is to go up the Eiffel Tower. He has seen pictures of it and talked about it a lot, it’s the main reason we chose Paris for this vacation. Oh, and by the way, he INSISTS we have to walk up the stairs. There are 1665 steps to the top. So, anyone want to take bets on where we all collapse, or who cracks first?

I try to find a few other activities we could all enjoy in Paris. It’s not that simple, we still need to avoid places where there are lots of kids. Chemo wipes out your previous immunity, and there is still a chicken pox epidemic here in Europe, where no one gets vaccinated against it. It could be very serious if Elliot catches it, but he can only be re-vaccinated six months post-chemo.

I get a message from a friend saying congratulations on the scan, and that she is happy all this is behind us now. I feel the irony. I decide not to think too much about the next scan in three months, or in six months, or the fact that he’ll have regular scans for years and that there are no guarantees.

Martin gets home just before 11pm. It’s official! We’re on vacation! We now have one million days together.

Posted in Fear, cancer, family, funny moments, hope | Tagged , | 7 Comments

What to do or say…

12 Jul

And thanks to all who did.

So it’s happened to your friend, co-worker, family member, neighbour, or just someone you know and care about. A tragedy of some kind, maybe a cancer diagnosis like ours.

Now you want to know what to do. What to say. Do you bring it up? Or do you say nothing, giving the person their privacy? What is “the right thing” to say? How can you help them without causing them to have to relive the sadness? Especially when there is nothing you can do or say to fix it, to make it go away and make life go back to how it used to be?

There is no perfect answer, no “special statement” you can make that will be just right. The person you care about is not expecting you to come up the right thing to do or say, for the simple reason that they are also in unfamiliar territory. They don’t know how to act either. They don’t know if they want to talk about it or not, they don’t know how to behave, they’ve never done this before either!

Of course I can’t answer for everyone. But I can tell you what helped me.  The most important thing, no matter what, is, don’t abandon the person. By that I mean, don’t pretend “it”, whatever it is, hasn’t happened. Don’t assume if they need help they will ask for it. Don’t think that they would rather just act normal.Normal doesn’t exist anymore.

One of my co-workers came up to me on my first day back at work after Elliot was diagnosed. Everyone knew of course, my workplace is one of these places where everyone knows everything about everyone. The joke in our workplace is that your coworkers  would all know about your imminent divorce before you do.

This was not someone I knew particularly well, although in my line of work people do get to know each other better than in most places.  So he just walks up and stands next to where I am sitting at work. He waits till I am free to talk, and quickly says: “I don’t know what to say. Here I am.”

And that’s all that was needed. I felt, just for a moment, less alone.

My family, friends, and coworkers have truly amazed me during this. So yes, here comes the mushy part, where I tearfully thank everyone for all they have done for me (I am picturing myself in a designer evening gown at a microphone, clinging to an Oscar as I make my thank you speech).

To my mom, who has also been battling cancer for twelve years, and who dropped everything and flew 4000 miles to be here and help out. Three times, within 10 months.

To my dad, who is always the first to read and email me about a post I’ve written on the blog updating people about Elliot, despite a 6 hour time difference. (Does he have some kind of alarm that wakes him if I post something, so he can be first?) He also has made the long trip here twice recently, to be here for important moments.

To my big sister, who carefully plans and saves up for her dream trips, then blows all her savings on flights  to Switzerland. Over and over. And then says it’s fine because she needed more chocolate anyway.

To my little sister, who is the most patient playmate Elliot could have.

To the rest of my family, my brothers, my cousins, aunts and uncles, my parents’ friends and everyone who keeps sending me messages and letters of support, little gifts and cards for Elliot, messages on my blog. You have gone out of your way to show me you care, and I hope you know what it has meant.

To Martin’s parents, who arrived in our hospital room less than 24 hours after hearing the news, even though they live in Denmark.  To their patience with me as I ask them one million medical questions (they are a doctor and a nurse) and have them review every blood test, scan and protocol, even though they are all in French (did I mention they are Danish?). They have followed this drama every step of the way, cancelling trips so they can be “on call” for us (apparently Japan can wait.)

To Martin’s sister, who flew down right away for a weekend, to support her brother through the initial shock. It was her first time in years (or ever?) with a whole weekend away from her three young kids, and she spent the entire time… playing with our 4 year old.

To my friends…

One who listened to me for a long time on that first night on the phone, and who texted me at the hospital that first night until 2am (I didn’t notice the time until a few weeks later when I was reading over the messages… so a sleepless night for her too.)

One who sends me a message every single time I’m at the hospital to check on me (I’m not even sure how she does this, we’ve been to the hospital over 100 times by my calculations).

One who drops cookies and chocolate in my mailbox randomly. (The chocolate, I insist, is only for me. The cookies I share with the kids.)

One who sends me uplifting, caring messages on a regular basis despite having gone through her own personal tragedy recently, and is always available for coffee and a chat.

One who lives in Canada and felt helpless to know what to do, so started sending me funny random emails about her daily life on a regular basis on the theory that it would distract me (the suitcase-shaped wedding cake was a classic).

To all my friends with kids who now know almost as much as I do about white blood cell levels and germs… And bring their kids over to play with my son inside even on beautiful sunny days when they would probably rather be at the park…

To my friends at work who, feeling the need to “do something”, collected so much money from all my coworkers that Elliot had a second Christmas…

To my girlfriends here who bought Elliot an end-of-chemo gift he’ll never forget: a big-boy bike. And then surprised me with a fabulous gift certificate to a spa.

And several friends who just keep checking on me, sending little gifts, leaving things in my locker at work, taking me out for coffee and drinks (oh and I’m not forgetting our “special” night out in November girls!)

To all our family and friends who came to Elliot’s end-of-chemo party, some travelling quite far to be there, some wearing very special t-shirts! And those who wanted to be there but couldn’t make it. It was a magical day for him.

To my new “cancer” friend, who’s son had this very cancer years ago, and is now a normal 20 year old. She let me know what I was in for but also gave me hope. And some good advice in answer to my desperate question “But how did you cope?”, she calmly said “You cope because you have no other choice.”

To ARFEC (Association Romande des Familles d’Enfants Atteints de Cancer), who were there to support us from the first day.

To Elliot’s teacher, who has magically managed to make him feel like he is still part of her class despite the fact that he has missed almost the entire year, by dropping letters, cards and little projects in our mailbox, and by teaching a class of twenty young children about cancer in a way that made them understand and relate to it without turning it into something weird and scary, so that when Elliot comes back they are ready for him.

To my co worker who made sure I knew he was there if I needed to talk, anytime.

To the anonymous donor who wanted to give us 5000chf when our insurance wouldn’t cover one of the chemotherapy drugs. (The money was sent to ARFEC instead, and the insurance company changed their mind after the newspaper story created an uproar of public outrage).

To the guy at the local boulangerie who keeps giving me a free cookie to take home for Elliot, even though the subject of Elliot, cancer, or the type of cookies Elliot likes, has never come up. (And it is exactly the right kind of cookie.)

To our pharmacist here in Rolle who has spent hours researching different medications for Elliot, trying to find the ones that “taste ok”, even to the point of making pills herself.

To the father of my two older boys, for letting me keep them last year at Christmas even though that was not normally the arrangement, no questions asked.

To my two older boys, who are just great.

To my husband, where do I begin… Somehow we created this perfect little boy with this tragic little flaw, and despite everything, I wouldn’t have it any other way.

And to Elliot, who when he whispered goodnight before falling asleep tonight, put his arm around me and murmured  softly in my ear“ You know, I love you and papa just as much as my polar bear…”

THANKS.

(Wild applause and standing ovation from the audience now as I gracefully exit the stage… and probably tumble down the stairs because I’m not used to high heels…)

Elliot's end-of-chemo party gifts

Posted in cancer, family | Tagged , , | 1 Comment

Fear

25 Jun

Elliot, walking into the bathroom where I was brushing my teeth, looked at me seriously and said “I think my heart is going to explode.”

Needless to say, I dropped my toothbrush and asked him what he meant. He put his hand on the upper left side of his abdomen and said, with a worried look, “It hurts right here.” I knelt down in front of him, and lifted his shirt.  The area he was indicating was roughly where his remaining kidney is, so my heart started beating a little faster. I asked him to describe the pain.

“Well, I was jumping up and down on the sofa…” (does a little jumping dance at this point to demonstrate), “and suddenly I felt this pain!”

We stare at each other a bit.  I tentatively ask if it still hurts now, since he is looking pretty much ok.

He hops around a bit, then declares “Yep, still hurts. Hey!” A lightbulb goes off on top of his head. “Isn’t this where my other thingy that makes pee is? Maybe it’s a new lump?”

A lump is forming in my throat as he says that, but I calmly say “You mean your kidney .”(“Yeah, kidney”, he repeats). “I doubt there would be a new lump there Elliot”, I say, amazingly staying completely calm, “ For one thing, you had a scan that didn’t see anything, and also you are still getting chemotherapy which would make sure that never happens again.”

“Hmmm,” he thinks it over, actually scratching his bald little head. “Oh maybe it’s allergies like you said I would have!”

Both Martin and I have hay fever and have been suffering with it a bit recently, and were wondering if Elliot would eventually have it too.

“Maybe” he says excitedly, “I breathed in those bad pollen thingies and they went into my lungs and made a hole and the air went down into those tubes where the poo is…”

Me: “Intestines?”

Elliot: “Yeah instead- tins! And now the air has made a hole!” His eyes open wide with the dramatic intensity of his prognosis.

I ask him a few more questions, and find out that he just ate a huge lunch before deciding to jump around on the sofa. I am starting to get a glimmer of a possibility.

“Elliot, I honestly think what you have is a cramp.”

“A cramp!” he says with horror, his eyes huge. “Is that really bad?”

Oh my poor sweet little boy. I wondered at the beginning, when he was diagnosed, if there would be any psychological side effects, and hoped that because he was so young, he would not be too affected.

But, resilient though he is, he knows what’s going on. Not too long ago,  on a day we had to leave for the hospital, he was in tears as usual, resisting my attempt to get his shoes on, saying he needed to watch “just one more tv show” and eat “just one more snack” and then he would be ready to go. We insisted, explaining patiently for the millionth time that this treatment was essential to making him better again. He looked at us with big tearful eyes and said “Why did I have to get this? Why couldn’t I get an illness that was easy-peasy?”.

He knows that cancer isn’t easy-peasy. He worries about the treatment, about how he will feel after the treatment, and about whether the cancer could recur. Just like we do.

I wanted to spare him all that by always acting optimistic around him, never showing him just how scared I was too. But he’s figured it out anyway.

A few nights ago I went in to check on him as he was sleeping. He had been wheezing a bit, so my mom-radar was on. He’s always had a bit of asthma so I knew it was probably nothing unusual, but I wanted to check on him anyway, because well, that’s what I do. Worry and check. Check and worry.

He looks so innocent as he sleeps there, curled up on his right side and snuggling his polar bear. I put my hand on his chest to feel him breathe.

And that’s when I feel it.

A lump.

On his upper right chest, just below the shoulder. Elliot had lung tumours in that area. Well, he had lung tumours everywhere. Lots of them. But the chemo made them all shrink.

This feels hard, like bone. I am breathing faster and can feel my heart beating, but I tell myself that it’s just because of the position he’s in. I move him down onto his back so he is lying flat, and feel for it.

Still there. I feel the same spot on the other side, on his upper left chest. No corresponding bump that would somehow make me think this is a normal part of his anatomy.

My heart is pounding in my ears now, as I sit there in the dark. I feel covered in icy sweat. I keep feeling back and forth between the upper left and upper right side. There is no doubt: he has a hard lump on the right side, the size of a quarter.

Panicking, I turn on the bedroom light and lift up his shirt.  Elliot wakes up groggily and mumbles something about leaving him alone.  And two things happen simultaneously: I see the port-a-cath bump on his chest and realize there’s no lump.

The port-a-cath bump. The same bump that has been there for the past 10 months, ever since the operation to install the port-a-cath, through which he receives chemo.  The same bump that I see every day when he gets dressed, when he bathes, and of course when they do the chemo. The bump that feels just like a hard, quarter sized lump.

He looks at me with a sleepy smile, pulls down his shirt and rolls onto his side, snuggling closer to his polar bear. “Can you turn off the light when you’re finished please?” he mumbles, and then he’s asleep again.

So I flick the switch and sit there in the darkness for a while, my breathing still fast, my head swimming.

There’s no new lump. The treatment really is working.

When does the fear go away?

Is it in a couple weeks when we get the results of the end-of-treatment scan, telling us we are “officially” done treatment and only need to come back in three months? Is it only after that two year post treatment milestone, knowing how unlikely relapses are after that date? Is it when he’s a teenager and comes home safe after a night out with friends? Is it when he moves out and starts his own life as an adult, no longer our child to worry about?

My mom has been surviving cancer for 12 years. She has CT scans every three months, and every time, there must be a bit of the “what if” fear. But she never shows it, at least not to us, her kids.

How do you live every day without being overwhelmed with worry? And yet, life involves risks, every day. When I strap Elliot into his car seat, I never think about the risk of a deadly car accident, and yet, the lifetime odds of a car accident are 1 in 4. Odds of dying from a car accident are 1 in 100. The statistics for Elliot’s cancer: 1 out of every 10,000 kids will get this, and the cure rate for those is roughly 80%. So, statistically speaking, I should be more worried about the drive to the grocery store than the cancer. But that is not how our brain works.

I wrote not too long ago about courage…(http://nicolescobie.com/?cat=16). I realize now that not only is it important to face fears during moments of crisis, but also in the long term, and every day. Life equals risk. As I was looking up those statistics earlier, I came across one important fact: your lifetime risk of dying is 100%. We try to ignore that fact, but there it is. Is there a way to turn that fact into a good thing? Maybe. It’s a reminder of how precious our time together is.

While I write this, Elliot is snuggled under a blanket on the sofa, cuddling his polar bear. Today is a chemo day.

I guess I’ll go snuggle with him.

Posted in Fear, cancer, family | Tagged , , , | 2 Comments

Family in the Cancer Crisis

21 Jun

When I was just a baby, my older sister Michelle, being at the wise age of 2, decided that I was boring and informed my mother that this whole baby thing had been a bad idea. My mom was probably only slightly tired at the time (after all, she had been given the entire 2 week unpaid maternity leave from work which was all you got back then, and then had had to go back to teaching full time. How could that possibly tire you out?) She responded in a mildly annoyed way (I’m making this part up of course, I have no memory of this but I like to picture it this way): “Well, Michelle, what would you have me do, throw her in the garbage?” To which Michelle crossed her chubby little arms across her chest and dared my mom: “Well, yes, let’s throw the baby out.”

There are differing versions of this story depending on who tells it, but in Michelle’s version I am actually casually tossed into the garbage can, at which point my valiant and righteous sister quickly changes into her superman costume and rescues me. My mom claims she pretended to walk toward the garbage can while holding me and Michelle flipped out and begged her to change her mind.

Regardless of which version is correct, I somehow survived the brutal garbage canning of 1968, and went on to become a normal child (Michelle is snickering as she reads that.)

From that moment on though, Michelle has been rescuing people. I have a relationship crisis: Michelle drives 8 hours to be by my side. My brother Billy’s car accident: Michelle is the first to the hospital. Younger brother Martin needs help out West: Michelle gets on a plane. My mom’s surgeries: Michelle is there day and night. I move across an ocean: Michelle keeps showing up just because I get married or I have a baby or my baby gets cancer.

Ouch that last one felt like a glass of cold water in the face. Let me re-group and re-cap: Michelle is the Family Social Worker, who is basically in charge of any Crisis Department. My family regularly has crises, so this keeps her quite busy. Never mind that she has a family of her own and a job… oh yeah, as a social worker.

Billy is the Strong Silent Type. I’m not sure why he’s always described like this because he’s not really that quiet. He did beat my son Jesse at arm wrestling last year, which I would not have bet on even slightly. So I guess that makes him Strong. He was pretty Silent during his coma for a couple months back then after the car accident, so maybe that counts.

Martin is the Black Sheep. This is only because he has dark hair and tans better than the rest of us.

And Julie is the Beautiful Young Princess of the family and gets to do whatever she wants. She will disagree with this when she reads this on her own laptop after watching tv while eating ice cream. Ask Michelle and Billy and I about desserts in our home when we were kids. Go on, just ask.

So why have I regaled you with descriptions of my family? Well, maybe to make you think of yours…

Family is what gets you through a crisis. For many of us, friends and extended family are included in that overall description of “family”. When you are dealt a cancer diagnosis, your family, whatever it’s form, is who shows up and closes ranks around you, a show of defiance in the face of an enemy attack. Together, we can fight off the attacker.

My family is a big one. I have… uh… a few cousins. (Shout out to my cousins here… just how many of us are there? I’ve lost count.) My dad comes from a family of 5 kids. My mom has 10 brothers. Yep, you read that right. And since they are all married and most have kids and most of their kids have kids… Let’s just say I’ve never had a reason to feel alone in the world.

When my grand-maman was still alive (she of the truck-caning incident) we had large family get-togethers, at Christmas, Thanksgiving, Easter, and sometimes just on Sundays, because, well, that’s what you do. But mostly in the summer, we would have the Family Reunion.

A Family Reunion in my family lasts three days. It also takes months of planning and strategizing, throwing together possible scenarios, location, theme, meals, wine to serve etc. To do the strategizing the family has to get together several times throughout the months leading up to summer, and eat and drink and debate anything debatable like the merits of whether to finally hold it out in Vancouver for once against the fact that no one feels like flying out there, and since none of the Vancouver relatives came to the meeting, they get outvoted. (Go on, Onc’Eugene, you know you need to comment on THAT!)  It is always finally decided to host it in a location where we can all pitch tents and make campfires and sing songs loudly late into the evening while sitting around the fire, the kids running around behind us in the black starry night. So usually somewhere not far from Ottawa or Montreal. Often it has been at my cousin Louis’ who is not allowed to ever sell his home by the water in Aylmer. It’s actually been written into the family bylaws. (Has anyone told him this?)

This year, my family is planning the Family Reunion once again. I am picturing them in their “planning sessions”. They argue and they laugh. The kids who used to run and play in the starry night are grown, and have kids of their own.

I moved away from it all when I moved to Europe, and I miss it. Especially in times of crisis, you need your family around you.

And yet, somehow, magically, my family has managed to support me from across the ocean, throughout our cancer crisis. Cards, gifts, letters, emails. One uncle was so worried that he might miss Elliot’s birthday that he mailed the card priority, costing a small fortune, to show he cared. I have cousins who’s wives keep in touch with me even though we have yet to meet. Elliot feels he is part of one huge, extended family.

There is also my husband Martin’s side of the family who have been there for us right from the beginning, about whom I could write a whole blog article too. (Note to self: write blog about Martin’s family. Enquire through trusted sources (his mom and sister) about amusing anecdotes from his childhood to include in the story. Perhaps the time he was attacked by a monkey? Or that time he shot himself in the eye? There is definitely some material there.)

Cancer. It sucks, it scares, it robs of our innocence and our time together. But it doesn’t define us. Facing Cancer Together… Great name for what this battle is truly about.

Posted in cancer, family, funny moments | Tagged , , | 5 Comments

Comedy in Tragedy

14 Jun

Don't know who this guy is...

One of the ways in which real life is so completely different from any fiction you might see in a movie or on tv is the fact that even in the midst of tragedy, there are funny moments.  These you don’t see on tv.  Can you imagine Kate Winslet hanging off the bow of the Titanic, arms thrown out to her side, eyes closed as she breathes in the fresh, dark night… and then a seagull poops on her shoulder? Ok I know, there wouldn’t likely be seagulls out in the north Atlantic on a cold night, but if there was… it would be kind of funny, right?

Well the reality is that these funny, bizarre moments do happen, even in the midst of the darkest moments. Sometimes, you are in too much pain to notice them. But other times, it is the very emotional vulnerability you are feeling that opens you up to the hilarity of the moment.

On the night Martin and I received the official diagnosis about Elliot, we cried and hugged outside of his hospital room before going in. We didn’t want him to see us so extremely upset. Then we took a deep breath together, and entered the room.

We sat next to his bed and did “normal” parenting things, helped him into his pyjamas, brushed his teeth, read him each a bedtime story.

Then we sat facing each other, whispering, surrounded loosely by the pale pink and pale blue curtains that hung tightly around our chairs and his bed, and Elliot fell asleep. We talked over how the next few days would go. Suddenly our plans had completely changed. Everything and anything that we thought had been important was suddenly re-evaluated. We made some decisions. Trips would be cancelled.  Our shifts at work would have to be changed. We can get thought this! We whispered bravely. Oh, let’s not forget that appointment we had next Tuesday, call and postpone that. And the night out with friends on Saturday, just send a text cancelling. What else… We sat in the darkness facing each other, whispering, holding hands. The red lights of the monitors providing the only break in the blackness around us. The teenager in the bed next to Elliot’s coughed, a loud rusty noise in the quiet of the room. “ Oh”, whispered Martin,  “And the other two, we can’t forget the other two. They will need us to get through this. We have to be strong for them, and not let them feel abandoned.” I felt my throat getting tight, hearing him speak so thoughtfully and paternally about my two older boys, only a few hours after hearing of his only child’s critical illness.

“Yes,” I say, “We’ll just have to keep right on being good parents to all three of them. It would be too easy to start being overly indulgent of Elliot and forget their needs too.”

Thinking of something else, I add: “And also, we really have to not become too overprotective.”

Martin nods slowly. His ears heard: “And also, we really have to not become too over productive.”

He quietly says: “Um, in which way?”

I say: “Well, you know, it would be natural to want to just keep him safe at home from now on during the treatment…”

He says: “I don’t think that’s a good idea, really…”

Me: “No, exactly! We still want him to be able to go out and have fun with life! Right???”

Martin: “Ok, but you want us to relax more? Work less? Just stay home and have down time?”

Me, starting to feel a bit annoyed: “Well I think we’ll get bored if we’re home all the time! And then I’ll just worry more if I don’t have anything to do!”

Martin: “Ok Ok I agree, we’ll just be really careful and keep him home a lot, and not do too many activities or take on too much!”

Me: “But I don’t want to just keep him home all the time! I want him to do some of the same activities he was doing before!”

Him, whispering quite loudly: “He can still do some of the same activities and it doesn’t mean we’ll be spending all our time running around from work to home to activities, we’ll still be able to manage! Don’t worry!!” he is starting to look exasperated. “We’ll never have time to be over productive!!”

I stare at him for a while. My tired brain goes into slow rewind, and replay of our conversation.

“Martin” I whisper, leaning forward toward him. He leans closer.

“I said overprotective, not over productive”.

“ohhhhhhhhhhhhhhhhh…”

And we giggle. A bit more. A chuckle. A stifled laugh. Louder, then we just basically start laughing, both of us sitting there shaking in our little curtain tent, laughing out loud with tears rolling down our faces, Elliot sleeping like any 4 year old does regardless of noise, the other older boy sleeping and snortling in his bed like any leukemia patient loaded up on morphine sleeps through noise…

Laughter in the face of tragedy. A strange partnership. But oh so real.

With my mom’s diagnosis, we had many moments like that. I remember after her first operation, she was hooked up to one of those machines that monitor the i.v., and beeps when it gets low. It also beeps after a few minutes if you unplug it, because the battery life is quite short. And, as any patient or caregiver reading this will also tell you, it also beeps at random sometimes just to annoy you.  These machines have a mind of their own and need attention.

So my sister Michelle and I are on the evening “shift “at the hospital, watching over our mom who had fallen asleep after telling us to stop giggling. It’s like being a kid again, in the back seat of the car as our mom tries desperately to drive us to school on time after we’ve missed the bus, and now are stuck in traffic, and we’re giggling. Only now that I have my own three kids can I relate to how the giggling is just making the situation worse. But I digress.

Michelle and I were giggling because we are slowly being driven mad by the unpredictable beeping of the i.v. machine. It had been beeping non-stop for 30 minutes, but the nurses were just switching shifts, the day nurse leaving and the evening one having just arrived for the night. It’s dark out, our dad has brought Julie (youngest sister) home for supper.

And the machine won’t stop beeping.

Michelle ventures out into the hall, finds the nurse, and tells her that, well, the machine that beeps, is well, beeping. Our medical lingo was not as good then, we actually referred to it as the beep-beep machine. The nurse exasperatingly says she’ll be there when she has time, and that they are quite short staffed tonight.

Sidebar here, as I mention that nurses just don’t get paid enough for all the work they do, they are truly the unsung heroes of the medical profession. I could go on about this for a whole other blog… Maybe I will at a later date. But the fact it that they work hard and are often overworked and overtired. It is not surprising that they can sometimes lose patience. And yet, I have rarely seen them be anything less than professional.

In any case, we wait another 20 minutes, surrounded by beeps and an increasingly frustrated mother, who is being woken up by the noise. Both Michelle and I make attempts at reading all the labels on the machine, trying to figure it out without touching it. We check the cables, but they all seem ok (in our expert opinion).

We peek out into the darkened hall again. No nurse.

Finally, I press one of the buttons on the machine. It still beeps. Michelle presses another. The beeping stops, then starts three seconds later. So we both just start randomly pressing all the buttons.

The nurse comes in.

Caught with your hands in the cookie jar.

We leap away from the machine.

The nurse grumpily quickly pushes some of the buttons until the machine stops beeping. Since she’s there, she also checks our mom, does a few nurse- type things while Michelle and I hover in the background like school kids. Just as she is about to leave the machine beeps again, like it’s saying goodbye. The nurse sighs, turns around, stares at it angrily with her hands on her hips, then says it must be the battery alarm that’s malfunctioning, and she’ll get a new machine when she has the chance but right now she has to do the rounds. And she leaves.

Beep.

Michelle and I look at each other. Our mom has actually fallen asleep now, and we consider whether we should just go home.

Beep.

Or, maybe we should look for a new machine? The nurse won’t have time for hours…

Beep.

Maybe we could just kind of go for a little walk through the quiet dark hospital, and if we happened to see a loose beep-beep machine, commandeer it?

Beep.

We head out.

And this is how Michelle and I happened to find ourselves wandering the dark hallways of the hospital late one evening, peeking into empty bedrooms, avoiding any people who looked official (by the way, anyone walking around a hospital late at night looks official).

Our plan was to get a beep-beep machine, roll it back to our mom’s room (somehow carrying it up or down staircases since we were avoiding the more populated elevators), and triumphantly show it to the nurse who would gratefully hook it up to our mom, thus making us the heroes of the Quiet Night’s Sleep.

At one point it did occur to us that we might get caught, arrested, and thrown in jail on suspicion of medical equipment theft. This made us laugh quite a bit.

So we were actually wandering around the dark, quiet hallways of a hospital late at night, laughing our heads off, and looking to steal a beep-beep machine.

I won’t tell you how the story ends, but let’s just say I have no criminal record. The photo here is Michelle and I, looking very innocent. Never mind that the actual events I’ve described take place roughly 20 years after this photo was taken.

We always look this innocent

I wonder now if our mom appreciates all the hard work we did for her. I somehow suspect she would rather not know about it…

Funny.

And tragic.

Can you relate?

Posted in cancer, family, funny moments, hospital | Tagged , , | 6 Comments

Long term side effects.

8 Jun

Saving a life, paying the price?

One of the things that remains an important issue for my mom after all these years in treatment is the long term effects the very treatment that is saving her has caused. In the medical field this issue is often referred to as “survivorship side effects”. It’s a bit ironic, isn’t it? The chemo has side effects, the surgery has side effects, the radiation, hormone therapy, immunotherapy, whatever else they may have thrown at you had side effects… And then they give you medicine to counter the side effects, and that medicine has side effects!  So you take all this and do what you’re told and finally feel like you are coming out of the tunnel and then suddenly you find out you have survivorship side effects!

My grandmother, on my mom’s side, lived almost to age 97. She was healthy and independent till a very advanced age. I remember once a truck had the nerve to cut her off as she was crossing the street downtown Ottawa, and she hit back… with her cane. I pity the driver.

My mom fully intends to follow in her footsteps (age-wise, not cane-and-truck-driver-aggression-wise), perhaps even break 100. And why not? Her cancer is in check, she is active and lives a healthy life.  Age has never slowed her down, and in my opinion, never will.

So, one day, after browsing her medical records (like you do), she noticed the phrase “moderate kidney disease”. When she asked her oncologist about it, he dismissed her concerns about the chronic kidney damage that was probably the result of years of cancer treatment saying it was not of concern because at her age this could happen anyway. The unspoken insinuation was that it wasn’t “worth” looking into, because of her age.

Now let me tell you about my mom. She doesn’t get angry, until she gets angry, and then, well, she gets angry.

The oncologist died a slow, painful death.

But seriously, she got herself another opinion, another oncologist. The issue is not yet resolved, but the fact is, cancer treatment naturally focusses on the immediate, and issues of future and long term health are secondary. This makes sense. Why check the coffee supply if the plane’s engines have just died (you’ll notice I use a lot of aviation analogies… Occupational hazard). But as survivorship rates are increasing every year, this is becoming an important issue, one that could impact not just our own health, but the economic future of our country. Health insurance is already expensive enough, we don’t need to be paying for long term kidney dialysis, for example, for someone who inconveniently decided to live for another 30 years. Why not treat the problem now instead of waiting till it becomes critical? (What if the engines are out because the pilot is tired and… and… ok I’ll stop).

Survivorship side effects? Of course these exist, and we have no choice but to accept that fact. My son is only 5 years old and coming out of 10 months of treatment which included surgery, radiotherapy and 24 rounds (so far) of chemotherapy. He has an excellent prognosis but the long term effects all these treatments will have on him in say, 20, 30 or even 60 years, are still being studied.

No matter what your age or prognosis is, you should request to be treated as someone who will live to be 100.

And if any truck cuts you off, hit it with whatever you’ve holding.

How do you feel about long term side effects? Do you have any survivorship issues or concerns? I would love to hear from you about these issues, and what you think the solutions are.


Posted in cancer, family, side effects | Tagged , , | 1 Comment