I’m always pleased to hear that my blog has reached people. Especially those on their own versions of this journey.
Today, I heard from Alex in London, England. She asked if I had any advice for post-treatment life. I thought I’d share my response here…
Congratulations on completion of your treatment and thanks for your very kind message.
Hmmm. Advice for life after treatment? I guess my advice would be: lower your standards, enjoy each day, face your fears, exude gratitude and try not to stress about prevention.
It seems easy to find tonnes of advice on how to try to prevent recurrence and I made a tonne of lifestyle, food, habit changes during my treatment. But the best advice I have for myself (or you) is probably to be good to myself: and that can mean to remember to be moderate about the anti-cancer stuff. Not to beat myself up because I go weeks or months without eating brazil nuts or almonds or ginger or green tea or flax meal. To accept that I drink coffee and red wine etc. That I have the occasional run of late nights.
Oh, and unsubscribe from all cancer blogs! (I do check in on my cancer-friends from time to time, and catch up on their stories, but getting a steady stream of daily cancer-news was not having healthy results for the post-treatment me)
And here‘s a great bunch of advice.
Wishing you many years of great health and happiness.
Hooping, it turns out, is perfect post-breast-cancer-treatment therapy. Almost.
It challenges my co-ordination, balance and spatial awareness.
It entirely occupies my mind.
Its frantic, erratic arm movements sneak my damaged limb into places I thought I’d left behind.
It allows me to flail and fail without drawing the attention of the likewise intensely occupied others.
And gives me ample opportunity to tame my uber frustration reflex.
It’s brand new, so there’s no kicking myself for lost progress.
It’s great exercise.
But last night I discovered the Almost.
Chemo’d chicks don’t spin.
Or at least they shouldn’t.
It’s easy to forget how disgusting chemo was.
Last night’s hoop-induced nausea was a vivid reminder.
Of how lucky I am to be healthy.
Thank you. Thank you. Thank you.
My port-a-cath has been out two months, today.
I can hardly believe it’s gone.
And I can hardly believe it was actually there.
I am so grateful.
As it turns out, memory issues are only issues if you remember you’ve forgotten stuff.
Today, I noticed this note, stuck next to my home work/sew station.
“Jan 15” was three days ago. And I have absolutely no idea where I was supposed to be.
On the bright side, neither does Mark.
And it’s his writing.
Mark recently shared with its makers the story of a happy family who almost lost everything and the one husband who had to keep them all together — I mean, how Marketcircle‘s Daylite Productivity Suite saved his sanity.
Here it is:
If you’ve ever had to deal with a cancer diagnosis in your family, you’re probably familiar with the changes it imposes on your life how it plays with your cognitive focus. This is what my family experienced when my wife, Andrea Ross, SMS’d me on October 6, 2009 with two big-small words: “It’s cancer.”
After I overcame the shock, I realized I would have to be Andrea’s chearleading champion and primary support. I half-jokingly announced to anyone I spoke to that I was taking on the role of project manager of Andrea’s treatment program. I also realized I would have to be coordinator of the family members and friends who emerged as our support system. In the process, I had to learn the medical language of cancer.
Daylite was the perfect tool to stay on top of our new life. It was my co-pilot. I maintained contact records and meeting notes for our new world which included a surgeon, medical oncologist, radio-oncologist, Breast Cancer Clinic case worker, Patient Designated Nurse (PDN) and a home care nurse. There were surgical prep appointments, an arsenal of tests, three surgeries and all the related recovery information, nuclear medicine appointments, energy treatments, blood tests, six chemo treatments over 18 weeks, six weeks of radiation treatment (30 in all) and port-a-cath flushes.
If that’s not enough, our family still had to function as one. Daylite helped me keep track of our daughters’ (then eight and ten years old) extra-curricular activities and invitations from friends and family who hosted them for playdates, ski outings, dinners and sleepovers.
I depended heavily on Daylite’s ability to link appointments, phone calls, emails and contacts to task and projects. I kept good notes in the details and meeting minutes fields. I can’t think of a feature of Daylite that didn’t help me keep my wits about me.
Daylite Touch was a fantastic tool, as well. I used it to stay on top of everything wherever I was. Having said that, I couldn’t have the 3G features of my iPhone enabled in most of the hospital, and I was more than conscious of the stigma attached to taking “handheld notes” during face-to-face meetings. So, I kept handwritten notes using my Livescribe Pulse Smartpen (livescribe.com) and attached the PDFs into appropriate records in Daylite. This saved me missing important information and allowed me to avoid a double entry note system. It was a snap!
I’m excited beyond words that Andrea’s been given a clean bill of health. The busiest part of her treatment program ended in time for us to enjoy an amazing and re-connecting summer. She returned to work in September. She have another four years of Tamoxifen and has lingering discomfort from the assault on her body. You learn to love life and live it all over again.
Did Daylite save Andrea’s life? No. Mine? Perhaps. We’ll never know. What I do know is there’s no way I could have kept my wits about me while tracking of all of the goings-on using any other personal organization software – definitely not as efficiently or effectively.
Yet, reflecting on the year, this morning, I was shocked at its rockiness.
It was a year of adjusting to the new me.
And of testing out the me that has been there all along.
As I reflected on 2009 and looked hopefully toward 2010, I never dreamed of the treat I had in store.
And I have high hopes for 2011.
Thank you, 2010. Welcome, 2011.
Some Zigs and Zags of our 2010:
|February 6 (our 11 year wedding anniversary)
Our insurer refuses to honour my critical life and disability insurance claim.
This was a cruel and devastating blow. Not only because they robbed us but after stringing us along for 4 months but because I’d been over-insured for the twenty some years leading up to my leap from Nortel six months before my diagnosis.
And life begins afresh.
We are spared the pain of the long-awaited trial and Keith Ross accepts a Section 810 Peace Bond which prohibits him from having any contact with us for a period of 12 months..
Our world has been peaceful since.
|May 20 (Mark’s 40th birthday)
The perfect storm of physical, financial, parenting and family challenges bring me to my knees.
Yet we survived.
We did it.
I take a first bite at my fear of public speaking.
I’m so glad I did. (Photo thanks to Alexa Clark.)
|June 16-Sept 13
My first summer with my lovelies since Bayla was a newborn.
The most fabulous summer of relaxing, reading, biking and being with my lovelies.
Our long, long, long awaited victory celebration.
Wine, munchies and good, good people.
Back to work.
Two more days a week than I had hoped but simply grand to have an income again.
Scary and thrilling.
We celebrate fifteen fabulous years of Mark Blevis.
Lucky, lucky me.
|Thank you, 2010… Let’s all enjoy a happy, healthy 2011.|
The Kindness of Strangers.
|One year ago today, I started chemo.|
|Days before — in anticipation of my hairless winter — Lucy, Bayla and I had combed the annual Originals Christmas Craft Fair in search of a funky chemo cap.
An extremely generous and talented stranger, by the name of Debbie Etherington, absolutely insisted that I pick out any of her cozy handknitted toques and accept it as a gift.
|That cozy toque, with its warm thrumbed lining and its even warmer history, kept my bald head warm all winter.|
|Today, Debbie and I met again. This time I brought good news, gratitude,…
And a set of home made pillow cases.
|Not counting this|
|My last haircut was immediately after this photo was taken.
Two hours after my diagnosis.
|Many are the times, in the 14 months since then, I had the urge to pop into the salon and give myself a little lift.
|Then, suddenly, I had tonnes of hair.
|Today, I had that long-awaited haircut.|
“Mrs. Ross,” someone called. I assumed it was time for my flush. But the receptionist continued, “no photos allowed in the hospital.”
I was stunned.
“No photos in the hospital, Mrs. Ross. It’s hospital policy.”
“My blog’s in trouble,” I ventured, when I’d recovered from the shock. But she didn’t see the humour. Then a feeble, “But it’s my story.”
At each silence, she kept on:
I have to delete any photos I’ve taken. Pause.
If I want to take photos I need to have “Security” accompany me and approve each one. Pause.
If she called security they’d make me delete them right here and now.
Since I learned of it on May 4, I’ve been hoping to eventually join the hospital’s Community Advisory Committee.
It hit me during Bif Naked’s un-freakin-believably honest, poignant and entertaining address at the conference last weekend.
And it hit me hard (thanks to you).
With a dramatic roll of her eyes, Bif described how breast cancer had saddled her with the pieces-picking-upping of her inconsolable family and friends. And the survivor crowd gave a massive been-there roar.
With all the whining that I did about inappropriate reactions, complete collapse (well, even the slightest tearing up) was a possible reaction that had never crossed my mind.
I blasted the world with my news as soon as I got it. By email, SMS, twitter, blogs, newsletter, gchat and in person, I shot my message out with faith that the returning vibes would get me through it.
Not a single adult cried. Not even Mark.
And, no matter how scary things got, my close friends and family always shrugged my worries off. And I guess I followed suit.
I realize now, it was not because they didn’t care. It was because they did.
So thank you, my beautiful friends and family, for shielding me from concern.
And please accept my sincere apology for not appreciating it sooner.
I’m just back from Body, Mind, Spirit: The Canadian Breast Cancer Network’s National Conference for Young Women Living with Breast Cancer — almost 48 hours solid of education and encouragement with 340 breast cancer survivors from every province and territory across Canada.
What a gift.
I left the conference with 14 pages of handwritten notes, a stack of books and brochures, and my brain abuzz.
The speakers and workshops were first class, the food was free, the facilities fitting.
And above all of this were the women.
340 women on journeys just like mine.
The lump-finding. The bad news. The pokes, prods and zaps.
The baldness. The isolation. The decisions.
The uncertainty. The losses, the triumphs and lingering impacts.
The crazy mood swings. The shockingly thoughtless comments.
Young families side swiped. With meals to be made and dishes to be done.
I’m back home. But I’m not alone.
Here’s a tiny sampling of my learnings:
- Newfoundlanders rock. Thanks to Yvonne Jones for reminding me.
- Cancer cultivates compassion. Thanks to Joy Smith.
- I need to start each day with lemon water, add ginger to my daily matcha, and remember to eat 2 brazil nuts, 2-4 tablespoons of flax meal, some rosemary and 1 teaspoon of tumeric each day. Thanks to Dr. Natasha Zajmalowski.
- Love heals. Death and recurrence do not equate to failure. Thanks to Dr. Rob Rutledge.
- I won’t rule survivor advocacy out of my distant future. Thanks to Ryan Clarke.
- It’s about time I explored Venus Envy. Thanks to Dr. Sally Kydd.
- I can do my own lymphatic massage. Thanks to Anna Kennedy and Pamela Hammond.
- Even a sexy, hilarious, intelligent, compassionate, super down-to-earth rock star feels stupid and isolated when she gets hit by breast cancer. Thanks to Bif Naked.
- Sleep’s much more important than supplements and therapies. Thanks to Christine Maria Gross.
- Your honesty reflects your intelligence. Thanks to Carol Anne Cole.
Massive thank yous to 340 strong young women from coast to coast to coast and to the inspiring survivors who put the conference together and shared their wisdom. And thank you to the Canadian Breast Cancer Foundation for the scholarship that made this enriching experience mine.
I can’t wait for next year!
Don’t take my word for it….Conference talk around the web:
- Watch it grow month by month
- They Make Me Feel Dressier
- Stubble Stings
- From the Mouth of Bayla #5
- Hair Shaving Celebration (video)
- Hair Shaving (audio)
Sorry about the photo quality. We were scrambling and ended up taking the photos at the Oat. “Not my best work, though. She wanted to look 48. I nearly airbrushed her into oblivion. Ended up checking ‘albino’ in the form“