If your life has been touched by cancer, there are certain things you know.
You know that the time between a scan or bloodwork and the meeting with your oncologist is a muddy pool of ugly thoughts and frantic distraction. I call it, “in the muck.”
You know that people tell a lot of stories that include the line, “And then she died of cancer,” or, even worse, “Her cancer was in remission but then it came back… and she died.”
You know that the residual effects of treatments sometimes last, and last, and last….
You know that, at times, your mental health may be just as affected by your illness as your physical health is. Mind, body, heart and spirit get driven out of balance by the experience of cancer, and part of recovery is restoring that balance.
I’ve talked about these things and more with other cancer thrivers and survivors. And one thing I was hoping to do regularly after I finished my own treatments was connect in a group setting with others who had been through a similar cancer experience.
Then the pandemic happened and the monthly support group stopped meeting and, as far as I can tell, there is no longer anything like that in Central Newfoundland.
So, starting this coming Wednesday, there will be a newonline (for now) cancer community circle of support. My friend, John, who is a cancer survivor as well, will be helping to facilitate. It is open to anyone who has endured, or is currently enduring, a cancer experience.
Whether you’ve just been diagnosed or you recovered ten years ago, you can bring your thoughts, experiences and wisdom to the circle. You can choose to just listen, or to dive right in and chat.
We will be following group counselling guidelines such as maintaining confidentiality and honouring diversity.
If you would like to join our online circle from 7:00-8:00 on Wednesday, December 9th, shoot me an email at email@example.com. I will email you back with instructions, information and the meeting link.
If you know of someone who may be in need of emotional, psychological or social support, please share this information.
Caring for yourself during and after cancer involves building a network of support. Join our circle. Enrich your connections. Find your balance.
It has been a year. A year since a doctor looked me in the eyes and said, “I have bad news.”
There is so much to say, and nothing to say. I’ve been writing and writing. There are a thousand moments, a billion thoughts, a zillion reflections.
Cancer leaves one with a multitude of things to adjust to.
Just this morning I was at the hospital for a routine test. It was nothing, just a follow-up, and I am sure I am fine. But my anxiety was high because being in the hospital hurts my throat and makes it hard to breathe.
I walked past the cancer clinic and felt this strange empty feeling, like I missed the place. The truth is that as much as I hope I never end up back there getting more treatments, it was a safe and hopeful place for me for a long time. Saying good-bye at the cancer center was a transitional moment and isn’t that just what life is full of?
Driving home I did some fire breathing to try to relax the vise in my throat. This is where you inhale deep and then drive the air up the back of your throat as you stick out your tongue and make a low “ahhhh” noise. It helps. Oddly.
I may have gotten some weird looks at the lights.
Oh, I’ve missed you, dear reader. I’ve been so stuck between wanting to say everything and needing to say nothing.
I wanted to tell you that my hands and feet feel like they’ve been stuck into a hive of bees, and that my joints and muscles hurt all the time. Chemotherapy damaged my nerves and addled my brain and made my ovaries fail. I didn’t lose my hair, though, so there’s that. Also, my tastebuds did rebound and I can taste my food again. I stop numerous times everyday while eating and think, “oh, this is soooo good!”
Sometimes I am struck by an immense feeling of gratitude to be finished with chemo and to be healed up from surgery and radiation. Being sore and numb and buzzy and fatigued is to be expected, and with time I will get better.
I am alive.
A year ago I missed my daughter’s performances in the Kiwanis Music Festival because I was in St. John’s getting radiation treatments. A year ago she played the part of “Fern” in Charlotte’s Web and I was not there because I was in the hospital.
This year I will be in the front row, for every single thing.
A year ago I prepared February birthday suppers for both my boys not knowing if I would be around to see their next birthday. I wrote in my journal, “Please, please let me be here next year for my kids. Just give me ten years, so I can help them grow up.”
And now I have the luxury of thinking I could live to be old.
It has been a year and I have learned to be careful about what I expose myself to. I have spent too many nights worrying because I made the mistake of consulting a website about recurrence statistics or because I have a new pain and I don’t know what it is.
My mom always says, “We will worry about it when there is really something to worry about, and not before.” And that is my mantra now.
It has been a year and I beat back the rushes each day, the nettles reaching up to sting me. The fog is lifting. The clean, blue lake of my life beckons. I will emerge from this gnarled foliage.
Cast your worries carelessly like garments on the shore, my friends. We will swim and swim.
Our kitten is slowly destroying the Christmas tree, and I’m okay with that. His name is Varjak Paw, after a cat in a book which Caleb’s beloved grade-four teacher read to his class, and to Annika’s class a couple of years later. Varjak is a sassy little guy, with slightly bowed front legs that give him an exaggerated swagger when he walks. He regularly attacks Cleo’s tail, in attempts to get her attention and have a good wrestle. He also likes to climb inside the fridge when someone opens it, and has been known to lick the butter if the cover is left off. We have surmised that one night he pushed a full chicken off of the kitchen counter so that Cleo, who was waiting patiently on the floor, could eat it. The roaster was licked clean when we got home, and both pets were hiding nervously in the playroom, but they didn’t need to worry.
I just laughed. We all laughed and laughed. It is hard to get upset about little things these days.
You see, my scan was clear. My oncologist told me I am cancer free. It is a wonderful thing, a truly fantastic piece of news. The best Christmas present ever, for the whole family. And I am full of gratitude and happiness. Every moment from now on is a gift for me, because I faced a life-threatening illness and survived. I am a survivor now.
I’ve been struggling to write this blog post, because part of me wants to wrap this whole experience up, put a bow on it, and say, “I’m done with this, it is over.” I feel pressure to do that. I keep saying things like, “onwards and upwards!” or “That is over, now back to normal life!”
But cancer changes you.
An old friend messaged me and said, “I am thinking of the thoughts, perspective and knowledge you’ve experienced.” I responded, “I feel utterly changed. And yet entirely like myself.” I am still processing the whirlwind that was the last ten months and, for some things, there just really aren’t words. There is understanding, though, and shared experience.
As I was thinking about how to write this post, I received an eloquent e-mail from another friend, who is a two-time cancer survivor. She said that if she had had something like this blog to read when she was first diagnosed with cancer she would have felt less alone with the disease. She thinks that many people who are dealing with a cancer diagnosis will find solace here.
I am so thankful that she sent me that e-mail, because I was reminded of why I started writing this in the first place. I remembered my poor, scared self sitting up in the middle of the night searching the internet in a desperate attempt to find people who had been through what I was facing. And then I realized that human beings are inherently messy, and that I had to continue to be honest.
So I will tell the truth, so that other people will not feel alone with these types of feelings and reactions.
I have a lot of physical, emotional and psychological changes to deal with. Some of them will heal and resolve over time, and some are here to stay. I will write about them honestly in the days to come. I will write about them knowing that I am extremely fortunate to be here everyday. I can enjoy this Christmas holiday without thinking it may be my last.
My wonderful oncologist said she thinks I will live a long time. I’ve pondered these simple words of hers a million times. I recite them in rhythm as I walk each day. And, although I no longer wake up sweating in fear in the middle of the night, I have to acknowledge that my life has been deeply altered by this whole experience.
I’ve been wanting to write this post for a while now so that I could wish you all happy holidays and share the good news. But I couldn’t present a neat and tidy ending to this cancer experience. Is anything in life ever that clean and clear?
We can celebrate happy news and enjoy the holidays. We can hug our loved ones and be filled with gratitude. And we can learn and grow and reflect and feel sadness, too. It is okay.
Merry Christmas and Happy Hanukkah, my friends. Here’s wishing you the courage to share a host of human emotions, the ability to laugh at the little things, and an abundance of good health throughout the holiday season and into the new year!
I had my last chemotherapy treatment this week. I am getting disconnected today, just in time to pass out treats for Hallowe’en. Tuesday was the first time my kids have been to the cancer center with us, and I think it was helpful for them to see what exactly has been going on all these months.
While I was in the hospital getting the first part of my infusion, Krista texted me and said, “Three years ago today we were running the East Coast Trail Ultra-Marathon, and now you are finishing your marathon of treatments! Wow!”
As a matter of fact, the timeline of this whole experience has been pretty interesting. Diagnosis – my son’s birthday. First radiation treatment – my Grandfather Taylor’s birthday (also, April Fool’s Day). Surgery and hospital stay – Easter time. Commencement of chemotherapy – shortly after Victoria Day Weekend and just in time for my birthday. Now I am finished my 12 rounds of chemotherapy (with no delays due to illness or infection, I might add!) on Hallowe’en, and the results of my December scan will be handed to me, hopefully, right before the Christmas break.
We’ve had a lovely fall in every way. My herbs are still flourishing on the back deck even though tomorrow is the first of November. Asher’s parents came to visit and we had a wonderful Thanksgiving with all four of my kids’ grandparents in fine form. How fortunate we are! My old friend, Robin, was in the area for three weeks and we had some quality time together. Even though I’ve often been sick, uncomfortable and fatigued, I’ve enjoyed these moments.
When I look at the simple jack o’ lanterns my kids carved after our celebratory dinner this week my heart fills with joy. They carved these pumpkins happily together at the kitchen table like they do every year, but we had a new lightness of spirit. They had just watched their mom ring the bell at the cancer center, and what could be better than that?
My oldest son began volunteering at the hospital this week and went off to school this morning dressed in costume as a doctor. I think we are all quite enamored with doctors, nurses, and pharmacists these days.
I have some healing to do now to get my body, spirit and mind back in working order. I’m not going to sugarcoat the cognitive effects of chemo – I don’t go out much because I am avoiding germs and don’t always feel well enough, but I ventured to my book club meeting last night where I had trouble understanding two-part questions. I also described Cleo as a “dog who started out as a puppy,” a comment which garnered some laughs! All joking aside; however, according to my nurses and many people I’ve spoken to who have been through this, it takes quite some time for your body and brain to rebound from these treatments.
This healing is a labour of love, and I have a fine team around me. I cannot thank everyone enough for the support, the food, the hugs, the cards, the visits, the chats, and the calls and messages.
I also have a new perspective. The day before my chemo this week, during a long, slow woods walk, I discovered upon returning to the ski trail parking lot that I had lost the keys to the van. I started to get panicky, because I was already quite tired. But then I thought, “Hey, it could be a lot worse. You could be back in hospital. You could be facing many more treatments. This is minor.”
So Cleo and I slowly retraced our steps, me scanning frantically with my blurry steroid-laden chemo vision, kicking leaves all the way. Of course the proverbial saying “this is like finding a needle in a haystack” came to mind.
I thought, “What would mom do?” and, of course, I said a prayer to Saint Anthony.
Dear Saint Anthony, Please come ’round. My keys are lost and can’t be found.
All Newfoundland Catholics know this one.
On we lumbered, me scanning and Cleo sniffing and then, there the keys were. Cleo stood next to them triumphantly and I whooped. It reminded me of the whoop I let out months before when Cleo and I were snowshoeing and I received a call on my cellphone from one of my doctors telling me the spots on my liver were just common cysts. But this week my whoop was about a set of keys, and that earlier whoop was about living versus dying. The difference could not be more stark.
As I collected my keys, smiling, I couldn’t help but murmur a certain phrase …… You know the phrase, dear reader!!!! SOME LUCKY!!
My daughter and I had the most wonderful day yesterday. We went out for lunch, did a little shopping (and laughing) at the mall, and went bowling with some friends. I honestly did not think about cancer once. Why? Because at this moment, my cancer is gone from my body, thanks to modern medicine.
After I got home from our wonderful girls’ day, I was resting on the couch checking Facebook. I noticed an article being shared around. As I read it, my heart started to pound and my hands started to shake. I wanted to scream at my innocent little phone screen. For there it was, another article about cancer survival rates being the same as they were a century ago and the “cancer industry” being all about making money and not about curing cancer. The author makes reference to a documentary that refers to the treatments I’ve had (radiation, chemotherapy and surgery) as “burn, poison, slash.” They make a claim that if people would only use natural approaches to cure their cancer, the rates of survival would be higher.
I am not a medical doctor, nor a scientist, but as a cancer patient I have done a lot of reading and research. When someone looks you in the eyes and tells you that you have stage 3 cancer, you sit up and you take notice.
When my cancer care team came up with a treatment plan for me, I researched it. The decisions they made were based on years of clinical trials and millions of dollars of research. If I had grown these tumours in my body 100 years ago, or even 50 years ago, I would be on my death bed at this point. But here I am, bowling with my little girl and taking silly pictures at the mall.
When I made the decision to undergo 12 heavy rounds of chemotherapy after already having gone through so much, I did the research first. My oncologist explained to me that the chemo would reduce the risk of a recurrence of my cancer from about 65% to 25%. I read the journal article that laid out the research that was done in clinical trials with my chemotherapy regime. The people who took part in these trials had the same cancer as me. And their outcomes were better because of this course of chemotherapy. Thankfully, now I will get the same benefit. So I will be forever grateful to the researchers, doctors and nurses who ran these trials, and the clinical trial participants themselves.
These days, I’m following immunotherapy research. If my cancer does come back in the future I may benefit from this research. As a matter of fact, I have met people online, many who are living with stage 4 cancer, who are being kept alive today by new, cutting-edge methods of treating cancer such as cyber-knife technology, targeted drug therapy, or immunotherapy.
I take a holistic approach to my health, and always have. Before my diagnosis I ate well and exercised and generally tried to take care of my mental, physical and spiritual health. Throughout my cancer treatment I have been going for massages and acupuncture treatments to relieve my symptoms and help with my general well-being. I use mediation, yoga and visualization to calm myself and deal with the psychological toll of this experience.
I believe that integrating Eastern medicine approaches into my treatment plan has helped me immensely in my recovery, but there was no “natural approach” that was going to shrink my big tumour and its’ little sidekick deposit. Cancer got radiated and shrivelled and cut out of me just before it ran rampant through my body. My insidious little batch of mutated cells were marching their way into my lymph nodes, but my surgeon and her team halted their progress. These people are my heroes, and I can’t help but get upset while reading an article that suggests that they are only in it for the money.
The article I read yesterday suggested there was no cure for cancer. But, in fact, cancer is entirely curable if caught early enough. Researchers and medical professionals know this. This is why we have screening for colon, prostate, breast and cervical cancer to name a few. Again, years of research and a lot of money has gone into developing screening tools and treatments for pre-cancer or early stage cancer, as well as approaches to prevention.
If you are interested in reading about cancer rates, treatment, or research globally, I’d suggest you start with the International Agency for Research on Cancer (IARC), which is part of the World Health Organization (WHO). One of the recent articles posted there discusses the recent rise in survival rates in wealthy countries for certain types of cancers. Of course, their information is based on properly conducted scientific research.
I hope this post helps to explain to people that, when they donate to cancer research, they are really making a difference. I also hope that, if your life is touched by cancer now or in the future, you have access to the kind of care and treatment that I have had. My doctors and nurses have been nothing but compassionate and informed. They made, and continue to make, educated decisions for me and my health, and here I am.
I still have a way to go in my cancer experience. I am not the same as I was a year ago, but I am alive. I am bowling and writing this post. I am kissing my daughter’s cheek during funny moments at the mall.
And to the “cancer industry” that yesterday’s article presented in such a scathing light? All I can say is “thank-you.”
I clearly remember the first time that I started to think about my food consumption. I was eleven years old. I had gained a little weight, as many kids do during their pre-pubescence, and my pants were tight. I was sitting in class and I coughed, and the button popped right off my pants and flew across the room.
It could’ve been an embarrassing situation, but I don’t recall anyone else really noticing. I just remember an arrow of a thought deftly skewing my happy childhood oblivion – You have to lose weight!
Like most kids of the 80’s, I sometimes ate cheez whiz and chips ahoy. We barbecued regularly in the summertime on charcoal, and on Sundays we happily filled a brown bag with penny candy at the neighbourhood shop to enjoy after leaving family swim at the Y. But we always had plenty of fresh local seafood and home-cooked meals every night, and Mom usually drew the line at sugary donuts, chips and pop, unless it was a special occasion like a long car ride. We almost never had fast food, because my father refused to eat it. He referred to it as “cardboard.”
In my family, I was the one who loved food the most. Mom says that on those long road trips, when I would get cranky and fight with my brothers, all she would have to do is ask, “Where should we stop for lunch?” and I would instantly drop my fists and cheer up.
So, at age eleven, when I first started worrying about my diet, my parents helped me to make healthy choices and limit myself to eating three meals a day, reminding me to eat when I was hungry. My mom encouraged me to listen to my body. As I grew and stopped eating whole sleeves of crackers out of boredom after school, my weight leveled off. But after that moment in grade-six, I was always wary of food. I think most of us are.
We are now bombarded with “information” about food, and sifting through it can be exhausting. There are so many different types of diets, many of which advocate removing whole food groups from your life. Throughout my thirties I was dealing with bowel issues, and I spent a lot of time reading about food and adjusting our family’s dinners to make them cleaner, more plant-based, higher in fibre, more organic, and on and on.
After my diagnosis, I read that cancer cells love sugar, and that diets such as the keto, which are absent of sugar, can help slow the growth of cancer. Now, the keto diet is generally high in animal protein and red meat consumption has been linked to bowel cancer, so I didn’t know what to think of that. Most books I read that specifically detailed an anti-cancer diet promoted a plant-based diet that is chock-full of fruits and veggies, legumes and whole grains. These are some of my favourite foods. But, after my surgery, I developed stomach issues and even the thought of a raw fruit or veggie made me really sick. This has continued throughout my chemotherapy regime. Raw food sometimes makes me feel gross, and if it is cold it causes nerve pain in my throat. For the first number of weeks of chemo I ended up eating a lot of immuno-bark and white things, so thank goodness for my friend Vi’s tea-buns.
So there I was, eating chocolate and white things and wondering whether I was doing enough to discourage the growth of cancer in my body. I was trying to avoid dairy, meat, and sugar, while eating lots of vegetables, fruit, legumes and whole grains, but I was failing miserably.
And then one day, a conversation with my friend Robin turned it all around for me. I was telling her about my food difficulties and she said, “What makes you feel good?” I stopped and thought about it, and I wasn’t sure. I told her all the conflicting nutritional information I’d read and she said, “You need to forget about that, and eat intuitively.”
Basically, she said to listen to my body and give it what it needs. She said that if I eat something and it is no good for me I will know. And she gave me some really great tips about easy snacks to prepare.
It sounds so simple, but I’d spent so much time reading and digesting information and trying to make sense of it that I’d forgotten the basics. Eat intuitively. Your body is wise.
Food is one of the pleasures of life and I am fortunate to have access to affordable, healthy food. I thought about my grandparents, who worked so hard to feed their families simple, nourishing food. I remembered the basic guidelines I’d been teaching my kids as I’d been taught – cook fresh food for your family and eat together at the table and don’t eat when you aren’t hungry. I decided then and there to eat mindfully and enjoy my food as much as I could and to stop feeling guilty about it. My choices have been mostly healthy since then, but when I have a treat I delight in it and I tell myself it’s okay.
To lead healthy, mindful, fulfilling lives, sometimes we need to cut through the noise that is all around us. The food noise is big, and looms large on the internet, in book stores, and on television. I’ve cut food research out of my life for now, and I am happier for it.
Is there anything you’ve had to stop investigating, dear reader, for the sake of your own mental health and wellness? If so, I’d love to hear about it!
I have always measured my life in books in the same way we categorize events by the song we were listening to at the time.
1990 – Riding around Badger Lake on my dirtbike with Robin, my best friend, hanging off the back balancing a ghetto blaster, while my dog Midnight tore up the road behind us? It could only be John Cougar Mellencamp ringing out loud in that memory. And what was I reading at the time? Cynthia Voigt, Norma Klein, Stephen King, and as many weird and dark accounts of para-psychological misfits as I could get my hands on. I liked strange, oppressive, scary or sad things in my art. I still do.
The other day, Deanne, a friend and book club buddy, nominated me for a book challenge, which involves posting a picture of a book you love every day for seven days on facebook. What fun! I started scanning my bookshelves and digging through old boxes. I had dozens of books I wanted to share, but in the end I picked mostly recent loves and one old childhood favourite – The Secret Garden. I read it 18 times if I read it once.
As I dug about in my pile of books, I came across a forgotten pair.
This pair of books were purchased separately in early September, 1996 by myself and Asher. When we bought our books at the Acadia Bookstore we did not know one another. But this particular novel was one of many on the list for the Literary Criticism course that Asher and I were both enrolled in as a requirement for our English degrees.
We met on the first day of class. I was walking up Linden Street, carting a backpack full of groceries. He was jogging lightly down the street in boxer shorts and a t-shirt, on the way to the corner store to get a newspaper.
When I saw him I did a double take, and not just because he was running down the street in his underwear. He just had an aura. He was happy, he was comfortable. I just knew he was a good soul. Of course, as we neared one another, I was faced with the unnerving prospect of running into him head on. I felt very Meg Ryan as I swerved one way on the sidewalk. He, true to script, swerved the same way. Our eyes met, we giggled, and then we both swerved the other way. We stopped, laughing, and he hopped aside while performing a gallant sweep of his arm, indicating the direction I should take.
I went home and told my roommates about this interesting young man I had met on the sidewalk. I still remember them laughing as I told the story.
Two hours later, I walked into Literary Criticism. Guess who walked in behind me? We looked at each other and grinned and both said, “You’re the girl/guy I ran into on the sidewalk earlier!” He sat next to me and the rest, as they say, is history.
But back to the pair of books. We were assigned certain books to critique and given approximate dates to be prepared to present on. We never quite knew when our professor would call on us. It was a very serious seminar class and there were so many smart people there. They were always ready to present. Asher and I, getting to know one another, were not so interested in the class. We were probably really annoying to the other students. And, as the term went on, we got a little lazy. Or, at least, Asher did.
I will never forget the day Asher was called on to critique Loitering with Intent by Muriel Sparks. He ambled up to the podium and held up the book. “Flirting with Intent,” he said, “was a very interesting read.”
I felt my face grow bright red as his freudian slip registered with the rest of the class and a few people tried to suppress giggles. Asher, either not noticing or caring, continued to rate the book on a scale of 1 to 10. I felt myself slipping lower in my seat. But, Asher, always cool and calm and unconcerned with impressing others, continued by soliciting the class as to their opinions of the book. He ran a nice little discussion, thanked everyone and returned to his seat. “Well,” he whispered to me as our professor glowered at him over his glasses. “I think that went pretty well.”
He never did read the book first nor last. I did read it, and I honestly remember nothing about it. Yet, when I came across this pair of books, unenjoyed and uncelebrated yet kept for many years, the sight of them brought me right back to that fateful class. Asher and I sat there that year, getting to know one another, and we had no idea what was ahead of us.
Asher cooked fajitas and played Buddy Holly on the guitar on our first date. I wanted to impress him so I called my friend, Jude, and said, “what do I pick up to go with Fajitas?” to which she replied, “Corona, of course!” Oh, she was so much more worldly than I was! I could always, can still always, count on Jude.
We are 18 years into our marriage now. We have been busy. At one point, in the span of five years, we had three babies, moved three times, changed jobs four times, and completed two masters degrees. We have also spent a lot of time building traditions, some of them as simple as our morning coffee and chat. We spend time with our kids and our friends and families. We work hard, but we have fun together.
We never thought we would be dealing with a cancer diagnosis this early on in our lives. But, as hard as this must be for him, Asher doesn’t step back any more than he stepped back from that long ago book critique. He just does what he has to do. He doesn’t agonize over things, or wonder, “why.” That carefree, boxer-wearing, newspaper reading, comfortable-in-his-own-skin guy, he just takes life as it comes.
I was telling Asher over our coffee this morning that I am starting to feel this difficult time peeling away from me like the skin of an onion. The first, toughest layer is shedding off. I will get there.
But I will be looking back on this time and remembering my dad playing piano to me while I lay on his couch hooked up to my chemo pump while my mom makes me tea. I will remember how Dad and Mom and I shared books together, and these books will go in my collection and I hope I will run my hands over them in 20 or 30 years and think of this.
Minimalists would like me to toss these books, but I never will. I will never toss any of my books. I am doomed to forever carry these books around and someday, hopefully a long time in the future, my loved ones will be forced to sift through them and get rid of them, or decide what to keep. They will not know the stories of all of my books, any more than I know all of the thoughts and memories etched in their hearts, but they will know some.
Like any work of art, each book tells more than one story – there is the story the author laboured over, and the story of the life of the reader.
Why do writers write? Why do writers share their innermost thoughts, their perspectives, their observations? Even a work of fiction reveals so much about the way the author sees the world, or moves in the world.
Why do I share things in a blog? I have asked myself this question many times, and I’m sure people wonder why I put this out there. But, for some reason, I am compelled to. Mostly it is because I hear from others who have experienced similar things or who simply enjoy reading it. This connection feels so right. It is humbling and empowering at the same time.
When you write for an audience, you share ideas and experiences. You start a dialogue. You leave something outside of yourself in the world and you hope it will resonate with just one other person. Your onion skin sheds off, and you become lighter. Awareness can be raised, and changes can come about.
Deanne, the same friend who nominated me for the book challenge, gave me a book about writing through trauma just before my surgery. It was a catalyst for me. It was one of the many perfect gifts I have received lately, not the least of which is your time, dear reader.
I want to thank you. Your time is precious, and I am so glad you lingered here with me and my ramblings for a little while.
On our first summer weekend at the lake, I set out to do what I always do – take solace in the water. Whether it’s playing mermaids with my daughter, water-skiing, swimming, or paddling a canoe, my favourite thing in the world is to be buoyed forth, coasting weightlessly on endless peaks and troughs.
After some time chatting with neighbours on the beach, I pushed my canoe into the water and waded in. There was a sudden rush of fire up my legs and I ran screaming out of the surf, pushing the boat away from me in my efforts to escape the biting pain.
Realization washed over me. Because of the oxaliplatin in my chemo regime, I haven’t been able to tolerate anything cool for weeks. I can’t drink cold water or even cut up carrots without wearing gloves. How did I think I would be able to frolic in the lake? I stormed up the hill to our cabin in my flip-flops. I smacked trees and threw rocks in anger as the dog trailed behind me. I started to cry but had to stop as chemo-induced starbursts exploded behind my eyes. On the deck I composed myself and sent my youngest son down to rescue the canoe, which was floating off toward the beach at the base of our cove.
When Asher came along I told him about the water. “I can’t even go for a paddle,” I explained, distraught. He looked at me and exclaimed, “Because if you fall in, your whole body might go into a spasm…” I finished his sentence, “And then I might drown!” Asher raised his arms and shook them about and flailed his legs up and down and I couldn’t help but laugh.
“It’s one summer, Janine. Next year you’ll be back at it.” He was right, but I still stuck my tongue out at him sneakily as he gave me a hug.
Chemo can make one feel cranky and sad. Steroids and other medications are prescribed to ease the side effects for the first 3 to 5 days of your chemo cycle, but these steroids and the processing of the chemo drugs, and maybe my own emotional reaction to the whole process, can send me into a very dark place. My cancer care team recommended I pare down the amount of steroids I take, and that has helped, but I still have bad days. I’ve become friends with a number of people who have been down the cancer path, and we have discussed this darkness. One of my friends referred to this feeling as the “chemo emos.” I thought this was the perfect name. Physically, chemotherapy can make one feel sick, fatigued, cognitively weak and, in the case of my particular regime, can set off the nerves and muscles in bizarre ways. But the mental and emotional grind of a series of chemo cycles can be even tougher to endure.
How does one endure? One method is distraction. As Tolstoy observed of the pitiful, adulterous Oblonsky in Anna Karenina:
He could find no answer, except life’s usual answer to the most complex and insoluble questions. That answer is: live in the needs of the day, that is, find forgetfulness.
It is relatively easy for me to find forgetfulness when folding the laundry, doing things with the kids, or reading a book. I get up everyday and I stay busy. Even on the days I feel the worst, I actively engage in things. I may not have the stamina to run 5 km or attend large social events, but I can always find something to do.
I’m heading into my 5th round of chemo tomorrow, and I’ve come to respect my mood swings. I am fortunate that I get 4 or 5 really good days each time before I go back for my next infusion. And the last number of days have been fantastic – I have been energetic and happy. Rediscovering my yoga practice this week has helped immensely, and as I come close to the halfway mark of my course of chemotherapy I am starting to visualize my “after.”
I don’t want to get overconfident or to tempt fate, but in the past few days I have started to feel like I really do have this in the bag. I have not developed an infection or illness yet, my immunity has not dipped into the danger zone, and my side effects continue to subside in time for my next round of treatment, which means I am tolerating things well. Each day I run through all of these positives in my mind.
When I have a hard time focusing on the positives and the darkness sets in, however, I simply sit with it. In the style of Kristin Neff, I use a self-compassion technique.
I place my hand on my heart and think, “I am having a really hard time right now,” and I breathe for a few minutes. And then I think,”What do I need to do right now to feel better?” Sometimes the littlest thing makes me feel better. A cup of tea. Sitting in the sunshine. A walk. A hug. A chat. Reading. Or, more recently, some yoga.
Writing this post has been a two-week long struggle for me. I did not want to seem negative or whiny. But I needed to highlight the importance of maintaining one’s mental health during cancer treatment. If we focus only on the physical and ignore our moods, our sadness, our anger, our thoughts and emotions, our bodies will still be stressed.
Healing requires a holistic approach. Mind, body and spirit.
Talking to a professional, yoga and nature walks, healthy food and family meals, mindfulness, visualization, self-compassion and a little old-fashioned Tolstoy-type “finding forgetfulness” (or task-engagement) are some things that help me support physical, mental and emotional health on a daily basis.
I might not be riding the waves this summer, but I am learning to manage these peaks and troughs.
We all go through tough times. See a counsellor or a psychologist if you need to. Talk to someone, develop strategies that work for you, and find a little something to look forward to each day.
Quite a few years ago my husband, Asher, returned from a social gathering laughing and shaking his head. “I love the way Newfoundlanders always look on the bright side!” he said. He had overheard a story about a man who had an unfortunate accident and lost a limb. After the incident was recounted, the other people in the room chimed in with a chorus of “some lucky.” The storyteller nodded his head, “It could have been so much worse,” he replied solemnly, “Some lucky for sure.”
Asher and I have used this phrase with a twinkle in the years since. One of our kids sprained an ankle? Some lucky. Ruined supper, set off the fire alarm, but managed to put out the fire in the oven? Some lucky. Wrote off the truck in a collision on the overpass? Some lucky.
The outcome of a situation could always be worse, and the people at that long ago party were right. We knew we were fortunate in so many ways, and we often talked of our blessings over morning coffee.
But last week, as I sang “Whatever Will Be, Will Be” and waited patiently for my appointment with the oncologist, part of me was preparing for the worst. As I walked in to the cancer center, I was breathless with fright. I had no idea what Mom and Asher were chatting about while we waited. The air around my ears was dense cotton, and I was doing the deep breathing I had practiced so often with teens in my office, hoping to contain my panic.
The news I received, however, was the best it could be. I had a wonderful nurse with me during the conference and she put me at ease. My doctor was compassionate and kind as she reviewed the results of the pathology from my surgery and prepared me for the next phase of treatment. Asher and Mom were steadfast in their belief that I would be fine, no matter what. I walked out feeling strong and knowing that I could once again imagine myself retired, or even old.
Asher and Mom and I bounced to the van and hopped inside, chuckling and chatting. Through the window the sky and trees beckoned me to come back fully, to return from my safe hiding space, this careful shell I have constructed over the last few months.
From the round expanse of joy in my chest, life came bubbling. The past 42 years – childhood puddles and school days, so many wonderful friends and family, Asher and our babies, the cabin, pets, trips and suppers, studying and writing and reading and working and living. Memories gathered like campfire wood to fuel the fire which would consume the pain and rehabilitation of recent months. Rising from the ashes, plans for the future with a stronger mind and spirit. A body that will, with time, grow strong again.
As Asher navigated the springtime potholes, I grabbed his hand and gushed, “Some lucky.” Mom and Asher concurred.
Recently, I underwent surgery at St. Clare’s Hospital in St. John’s and I had a week-long hospital stay afterward.
That was a hellish week. There were times I was writhing in pain on the bed or turning in circles in the middle of the night wringing my hands saying, “I don’t know what to do.”
Thank goodness, the nurses knew what to do.
They administered meds, and changed IVs, and reinserted catheters and adjusted pillows to try to get me comfortable. They talked to the doctors about what I needed. But most of all they showed care and compassion and empathy. They held my hand and hugged me. They asked about my kids and commiserated about my totally unfair cancer. They listened without judgment. When I asked, they told me about their children and their own lives. I needed those normal conversations. It made me feel like the world was still turning.
They related stories of past patients who had the same invasive surgery as me but were now scuba diving in Mexico.
They gave me hope. They helped me understand that I would learn to navigate the changes in my body. They gently encouraged me to dream about new adventures when just walking down the hall was a challenge.
Sometimes at night I heard people running in the halls, beeps and buzzers, and yells and calls. I know my nurses were juggling a lot. At the end of a twelve-hour shift, how tired must they have been? But they always came in to say good-bye and let me know when they would be back.
I missed them when I left the hospital, and I’ve thought of them often since. Maybe I’ll go back and visit someday. I want to hear how they are doing. And I will tell them all about my latest adventures so they can pass the stories on to their new charges.
Since I’ve returned home from the hospital I’ve gotten to know some other nurses and they have eased my transition. One nurse in particular has made herself available to me every week for an appointment so she can monitor my progress. She e-mails me regularly and answers all of my questions, provides me with supplies, and reassures me when I am worried. My healing time is lengthened by the radiation I underwent prior to surgery, a fact I didn’t realize until she explained it all to me. She is a wealth of knowledge and information and I don’t know what I would do without her.
Thank-you, Nicole. I hope you like chocolate, ’cause I’m getting you some 🙂
As a counsellor, I am trained to use what we call an “empathic response.” Many people think that counsellors or therapists give advice, but first and foremost what we do is listen and respond with empathy. We may ask probing questions to help our client flesh out a story or an issue, but ultimately we realize that they are the expert on their own life. We rarely give direct advice to clients, choosing instead to be a listener and a guide, or a sounding board for ideas. When a client is confused or seems to be off-course, we may issue a challenge which is designed to encourage reflection and, perhaps, problem-solving. Listening, acknowledging and affirming of emotions comes first, though.
Why am I writing this description of what a counsellor does? I’ve been reflecting even more than usual lately on how we emotionally support people who have undergone trauma. As someone who is in the throes of invasive, scary and body modifying cancer surgery and treatments, I often feel shut down by the following statements:
Be Positive. Stay Positive. Think Positive. Use your good attitude. Smile.
These are the things we say to people who are going through difficult life events in our culture.
Now, I’m sure I’m guilty of saying these things in social contexts before. In my professional role I wouldn’t say, “Well, you just have to be positive,” to someone who is wracked with sadness or anger or grief. But I’ve probably said something like this to acquaintances in the grocery store or at the theatre when they confide that they are dealing with a difficult problem.
What do people feel when we do this to them? They feel isolated and alone.
We have ignored their emotions. We have given the message that the only acceptable emotion is happiness, and put forth the idea that one must bottle up other emotions and push them inside. We have said, “Don’t share these emotions with me. They are disturbing.”
What would be a better response? How can we support others emotionally?
“It sounds like a really tough time for you,” “You can tell me about your experience,” “This is so difficult for you,” “I’m really sorry to hear this. “
Respond with empathy, make eye contact, and just listen. Offer support. That’s it, no platitudes required. Usually the individual we are talking with will feel lighter after this encounter, and us listeners will feel a sense of efficacy.
Pretending everything is fine when it isn’t drives isolation. Recognition of and sharing of emotion is what creates human connection. And human connection is a catalyst for happiness, so it’s a win-win, really!