Tag Archives: Hospital

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.

Comedy in Tragedy

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?

A Day on the Chemo Ward, fourth and final part

 

So I’m sitting here in the chemo ward and starting to feel slightly depressed at the memory of the night Dr. Latour and Dr. Nelson gave us The Diagnosis. There doesn’t seem to be any new kid coming, and I can’t just sit here for the next three hours remaining of toxic chemicals being administered to my perfect little boy feeling down. I look at Martin, and he wisely feels my stare and looks up from his phone.

He smiles. I ask what he’s reading about on his phone. He excitedly starts to explain to me all about a new gadget that is coming on the market soon (possibly a mobile phone, but because he doesn’t use that expression for it and instead says the Android 4 point something I am left to wing it) and how it will be in Europe soon but the problem is they are already working on the next version so he is not sure if he should buy this one or wait for the next one. I’m smiling and nodding and trying to make appropriate comments. It’s a bit like our conversations about wine. He is European and has clearly not really noticed that I’m Canadian. You could give me some cough syrup and tell me it’s a vintage 1995 and I’d drink it. If it’s not beer, our whole country is just faking it. He actually knows a lot about wine, and in true Scandinavian form, he is willing to pay a lot for the good stuff. In true Canadian form I have trouble paying more than 50 dollars for anything that doesn’t come with an engine.

People have asked us how we are holding up, how our relationship is doing.   This type of crisis could easily cause a marriage to rupture at the seams, crack under all this pressure.

It’s strange though… This whole thing has actually made us stronger. I would have rated our relationship pretty high on the “gonna work” scale, (as opposed to the “doomed to self-destruct scale.) In any case, I think we have reached a new level in our marriage. We were lucky to already really happen to like each other basically just as we were. It’s actually possible that Martin sees right through my Canadian wine-and techno fake act, but keeps right on talking because he thinks I’ll see the light if he just keeps explaining the advantages of the Google Android line of product over the Apple religion…It’s true that when I start to ramble about literature or parenting or schooling he listens as if he actually shares my passion. So maybe he’s faking it a bit too.

In any case, my point is, we have actually gotten closer. So that is one to put on the list of Cancer Pros. We already know what’s on the Cancer Cons list, so there’s no point even writing it. The Pros list is much more interesting, and challenging to come up with. Like, for example, the shampoo savings! The close friendship I have developed with my pharmacist! The medical lingo I have acquired! The vomit stain removal expertise skills! The fact that little things don’t stress me anymore! The shared battle against this cancer I am fighting with my husband… no exclamation point.

He does amaze me. Like Elliot, he has shown a strength I can only admire. I know why he is talking about the phone now (it could actually be a tablet, now that I listen a bit more carefully). It isn’t because he is unaffected by where we are and what is happening. It’s because these things make him happy, and he needs to cling to anything that brings him close to feeling happy, even close to feeling ok. So I am thrilled to hear about the gadget thingy, and I wish I could just go out and buy it for him myself. That, by the way, would be counter productive, as apparently the search for the exact right gadget is part of the thrill, so if I bought it that would ruin the chase. Good thing he’s not a womanizer, or I might be in trouble. I don’t mind competing against Androids. Oh that totally came out sounding the wrong way.  Is it ok to giggle to yourself while you sit in the chemo ward with your child getting his dose? What are the odds someone will notice and think I’ve lost it? Ok here’s the real question, what are the odds I have?

Martin decides to go down to the coffee shop and get us some more coffee.  I ended up reading a book and playing a puzzle with Elliot after all (turns out I am actually competitive).  And now Elliot is back to watching a movie on the Ipad again. The Rude Mom’s daughter has fallen asleep, the mom is staring out the window. I consider talking to her, but I think she needs time. Talking to me would make her feel too much. Looking at Elliot would make her think about her daughter’s imminent hair loss. She is not ready to be part of the Cancer Moms social club yet. She stills holds onto that normalcy myth, and isn’t quite stepping into our world yet. Some people would call it denial. It’s really actually just part of acceptance.

The Smily Girl and her mom are getting ready to leave. Smily Girl has been in treatment since last summer, and “only” has another year or so to go.  The nurse comes in to remove the chemo needle. These are the bad times. The needle is sticking out of the port-a-cath, which is a small box inserted under the skin on the upper right chest. The port-a-cath is connected to a vein, so that the chemo can be administered easily. Most children receiving chemo have a port-a-cath, which is installed surgically before the treatment starts. It spares them the need to have an i.v. inserted in the fragile veins of the  arm or hand every time. Ah, the miracles of modern medicine. Before this, many cancer patients suffered terribly from the damage the chemo would do to their veins, or even, worse, from the chemo medicine spilling out onto their skin, and destroying large patches of it within seconds. The only thing is, a needle needs to be popped into the port-a-cath for each treatment, and removed after.

Apparently it doesn’t hurt much. The kids beg to differ. They all, universally, freak out when it’s time to insert or remove the needle.  So the nurse comes in, goes to their bed and cheerfully says it’s time to remove the needle, the chemo is done. Smily Girl freaks out. The nurse tries to reason with her. The mom tries to calm her. The tray of bandages and syringes the nurse was carrying almost goes flying, but she catches it in time and places it on the table. These nurses are pros. She never loses her smile. The mom holds her daughter’s legs and the nurse holds her arms with one hand, then somehow yanks the needle out with the other. Smily Girl’s screams reduce to a whimper. Mom releases legs. Nurse continues to smile and says something about how brave Smily Girl was, while quickly applying antiseptic and a bandage. The bad moment is over. The mom and I happen to exchange glances, and we start laughing, then nervously stop, feeling the inappropriateness. Smily Girl says she wants ice cream as soon as she gets home. Mom agrees breathlessly, running her hand over her daughter’ thin wisps of hair.

Parenting when your child has cancer is a whole new ballgame. All the rules are out the window. Forget all the ideas you had about chores, food, television watching, video games, bedtime, sleeping in their own bed, buying toys for no reason… It’s a free for all.  I’m not sure how we are ever going to get back to any kind of normal discipline or rules at our place.

For example, Elliot frequently eats while watching TV. That’s because they told us at the beginning to let him eat whatever he wants, whenever he wants, however he wants. They said he may have no appetite, may be tired a lot, may need special treatment…

Elliot heard all this, arrived home after the first week in the hospital, declared himself King and has been ruling with an iron fist ever since. It’s actually quite lucky that we never had junk food at home, so he doesn’t know about it,  because he basically eats whatever he wants, whenever he wants, however he wants… Non stop! I almost feel like putting in a complaint with the hospital, they told us his appetite would be reduced, and he’s still eating us out of house and home, just like the other two, who grumpily are not allowed to have breakfast while watching a movie. Of course, there are also those times when he just lies on the couch refusing most food, so we feel he is entitled to some freedom of choice the rest of the time.

The chemo is done soon for us too. We get home late that day. As we pull off the highway at our exit Elliot looks outside and says in a surprised, innocent voice “Hey, I didn’t even get sick this time!”.  Martin and I are exhausted. Elliot decides to ride his bike from the car to the front door because his feet are “too tired to walk”. Once inside, he announces he will watch two tv shows and then play with his lego, and he would like a sandwich while watching tv please. Martin makes a b-line for the coffee machine and I get busy with the peanut butter and jam.

And so goes another day as a Cancer Mom. Is it really that bad? Yes and no. Yes, much more, and no, not as much as you think. This answer has become standard for me, but it actually can be applied to almost any major life question, especially when asked by a person who has no idea yet…

“Is childbirth really that hard and painful?”

“Is having a baby really that life-affirming and deeply meaningful?”

“Is parenting really so incredibly exhausting?”

“Is marriage really so easy when you meet the right person?”

“Are teenagers really that frustrating?”

“Is Madonna really older than me?”

“Is it really a bad idea to go on Facebook after a glass of wine?”

Yes, much more, and no, not as much as you think…

You get the picture. Yes, being a Cancer Mom is “that bad”. It has reduced me to a quivering mess, collapsing to the floor because my legs gave up trying to hold me steady. But no, it’s not “that bad”.  It forces you to see what’s important. To live in the moment. To appreciate. To slow down, and take a breath.  To realize that we are all on the same road, with the same destination. It’s just the length of our road that’s unknown.

People say they are impressed by how strong we are. I like the saying ” You never know how strong you are until being strong is the only choice you have.”

 

A month goes by, with more chemo ward trips, more doctor’s visits, more life.

Today is The Big Day. Elliot had a CT scan a little while ago and now we sit in the waiting room, waiting for our doctor to call us in for the results.  They do the scans every three months, to check for any signs of relapse.

This morning we were all kind of crazy. Picture your typical morning, maybe you have to get the kids ready for school and yourself ready for work, your husband also rushing around getting ready. So there is the normal morning madness as everyone struggles to get out the door in time (or as the parents struggle to get everyone else out the door). But to spice things up, in this case, both parents are kind of insane, the anxiety of the past month having built up to the point of almost drowning in it. We should almost install a video camera in our home and later watch the whole scene on fast forward, it would probably make us laugh till we cry. Or cry till we laugh.

Elliot did ok until we got to the hospital. Then he took one look at the CT scan machine, crossed his arms, and declared he would have no part of it. We remembered only then that he had actually been asleep for his first scan. Not an option this time. We beg. We bribe. We get angry. He holds firm. When asked by the patient-at-first-but-now-starting-to-lose-it technician why he won’t do it, he replies “because the machine looks like a big metal bagel and I don’t want to be squeezed through a big metal bagel”.

I swear I’m not making this stuff up.

Roughly 20 minutes later (or 5 years, depending on how you count stress-minutes) he finally caves. Deep down, even though he is only 5 years old, he knows this is important. Making a fuss is his only way to have some control over the situation.

 

And now we sit here and wait for the results. Martin is staring at his mobile phone, unblinking. Elliot is sitting next to him reading a book. I am pacing. Pacing has become my main form of exercise, I am pretty sure I have burned thousands of calories with this little known fitness regimen. I watch people come and go, the anxiety buzzing through my body like really loud tinnitus. I’m pretty sure if someone touched me right now I’d give off an electric shock.

I see a little bald girl run by, she looks vaguely familiar. I pace toward her. She has run into the chemo ward and I follow her in. I almost bump into her mom, who is now helping her onto the scale. It’s Rude Mom. She doesn’t move while the nurse waits for the scale to register the girl’s weight, both of us riveted by the red digital numbers. Then after the numbers settle, Rude Mom breathes out and looks up, recognizing me. She smiles and says hi. I ask how they are doing. She laughs and says fine, although the steroids her daughter is on has turned her into a little monster! Laughs again. We chat a bit. Another mom and child come in. We both say hi, but the mom doesn’t answer, just holds tightly to her long-haired boy’s hand and waits for the nurse to come back. They stand there, awkwardly, in the middle of the room together, like a little island surrounded by deep blue sea infested with sharks. Rude Mom and I look back at each other and both think “newbie”. We don’t say it, and yes, I can now read her mind. She has joined the Club.

Without actually hearing it I sense we are now being summoned into our doctor’s office, so I speed back out into the hall where Martin is standing up and staring at me with that look on his face that is panic mixed with his “everything is going to be alright” expression.

Dr Latour is the one who escorts us into the office, but as we walk in I see Dr. Winters sitting behind the desk too. Oh my, a double date, we must be pretty special. A moment of panic while I hope we are special for all the good reasons, not the bad ones which might be interesting for an oncologist.

Dr. Winters is staring at the computer, his hand scrolling the mouse, but looks up when we walk in.

“It’s really good news”. He says.

I don’t remember much after that.