Scaring Myself and Having No Regrets.


Here is a screenshot of my video application to speak at a conference in Nice, France in 2018. It is a wonderful conference being put on by The Expansion Project (www.expansionproject.ca) which brings together people looking to elevate their life and passion for living. The extra beautiful part of their work is that there is always a charitable component, giving time and money to charities from their proceeds.

Some people may wonder why it was so important to me to apply. It came down to not wanting to have regrets of not at least trying. 
When I was about nine, I had just moved continents and was back at a school being the new girl again. We had moved lots during my childhood and of course that affected my confidence in a big way. 
Shortly after I arrived, there was an audition for a school play. I was desperate to audition but I also felt so intimidated by everyone in that school. We were the least wealthy in an elite private school,  I was in what can best be described as an “awkward” hair phase, and I didn’t have many friends.  Everyone else who was auditioning was prettier and smarter (or so I thought) and I let these things talk me out of trying.    

No one can say whether I was a better actress than others, but I never let myself try. The regret has stayed with me  all these years. I may not have gotten a part, and I would have been appropriately sad for a fleeting time, but what I truly regret is the not trying.

It’s always easy to see that there are people with more experience in speaking, people who have a better website or more money or poise, better hair or cuter glasses. But I also know that I have unique things to share and I have promised myself since the age of nine, that I will always try. 

So try I did. I hope I am selected. But even if I am not, I won’t have any regrets, and that feels like the biggest success of all.

Tempting Fate:

(Image courtesy of imgur.com)

Yesterday I wrote a blog post about redefining the notion of chronic illness into something more positive: perpetual wellness.

I guess the universe is taking me at my word and testing my commitment to this practice. Less than 24 hours after that post went up, I’m back in hospital unexpectedly with an infection.

So now I’m working on perpetual wellness, hospital style! 

The things within my control are what I’m going to focus on :
-free and bountiful supply of popsicles

– funny staff who go out of their way to make me feel better

– many other patients who are enduring much worse things than I am

-extra trashy cable tv channels that we no longer have at home

– a great coffee shop in the building

– fabulously supportive friends and family visiting and reaching out

– free, fabulous healthcare given in a caring and timely manner regardless of pre-existing conditions.

Happy Friday, all. What are you appreciating today?

Redefining Chronic Illness: Perpetual Wellness is the new mantra.


(Artwork by Emily Mc Dowell. Please see her amazing empathy cards at emilymcdowell.com)

I never, ever thought I’d be writing about chronic illness, let alone experiencing it at such a young age, but here I am.

Chronic illness is defined as an illness that lasts more than three months. When I had cancer, I naively thought that I’d be back at work within a few months and that would be that. Cancer would be in the rear view mirror and I’d be 100% healthy.

I was blessed that when my two years of treatment were over, I was totally cancer-free and have remained that way ever since. This is incredible, and I do not take this lightly. 

What I didn’t anticipate was that after returning to work for six months, that I would be off again for health reasons. Many of the side effects of cancer treatment have remained and I’m working to move beyond that back into health, and back to work. A doctor once told me that many cancer patients learn to live with chronic illness even after their cancer is gone, as they are left with sequelae from cancer and it’s treatment. The medical community sure knows how to be a downer! 

I’m “supposed” to be back at work but I am not. I feel guilty about this some days, but I also know I’m not well enough to work yet.

Someone I know who had cancer, didn’t end up with as many side effects as me, and didn’t have a problem returning to work. It’s really hard not to compare oneself to others and I have to practice not doing this on a daily basis.

What keeps sending my mind and thoughts scrambling these days is the concept of chronic illness that that doctor had spoken of. It sounded scary, lifelong, and utterly depressing.

I am researching ways to be healthier and “live with chronic illness.” The wording out there is miserable. Some of the phrasing includes: “managing chronic disease;” “suffering with ongoing side effects”; and my personal favourite, “coping with debilitating illness.” This may be a matter of just semantics to some, but to me, the way I think about the situation affects the way I can manage it, and trickles down to every aspect of daily life.

I realized as I read that it was time to redefine and reclaim the experience of chronic illness. This is not to say it doesn’t exist, or that it’s not serious and debilitating, and much worse for some than for others. However, I believe for me that instead of trying to overcome chronic illness, I’m officially seeking Perpetual Wellness instead.

When I think about illness, I tend to think limitations, a situation or symptoms just being thrust on me with no control of my own, fatigue (I would like to punch that word in the throat!), managing symptoms, and a life of ongoing problems to be solved. 

When I think of wellness, I think of having more control of the situation, having options, choosing how I want to handle things, and thriving, no matter what.

I am now searching for elements of Perpetual Wellness, choosing what treatments and practices work for me. I will seek medical attention when needed but will also consider other opinions. I will remind myself that although living with symptoms can present challenges, I do have a great deal of control as to how to cope with them and thrive simultaneously.

When you “should” be well but aren’t:

The experience of having cancer never ceases to surprise me. Now that my treatment is over and cancer is long gone, I assumed I would be well and would be able to resume a completely normal life. I am totally wrong about that.

I’m now almost three years since diagnosis and just over oa year after treatment ending. I know people think it should be a distant memory and that all is well now that cancer is gone. What I am learning, rather reluctantly, is that my body is probably going to take a fair bit of time to recover from all the treatments. I underestimated their impact on me.

I still have side effects from chemotherapy that go away in most people, but seem to be sticking with me. I have a level of fatigue that makes my body feel like I have a cold and can’t breathe every single day. I have always been a positive person and even when cancer was kicking me down, I managed to maintain my optimism. But I’m getting weary and I am constantly sick due to having poor or no immunity and living with a preschooler who is like a walking Petri dish. 

People expect me to be fine, to be back to my usual self, and to be bulletproof essentially. They exclaim “you look so great” when they see me because my hair has grown back and sometimes I manage some makeup, so that the chronic anemia doesn’t have me looking like a ghost. And they want this for me because they care about me, and I think it also makes them feel less worried about themselves if this ever happened to them.

What I find hard to tell people is that the treatment for cancer is actually the best part, because you know people are watching and cancer won’t sneak up on you. And if anything goes wrong, you have an emergency number to call, a way to get on a list for someone to help you. 

When treatment ends, you are on your own with your family doctor, and you hope like hell it is enough to keep everything at bay. But I’d love to know the answers to so many questions, like:

Is there a reason scar tissue can start hurting two years after surgery for no particular reason?

When should I worry if I have swollen lymph nodes in my neck?Right now I have a cold and a fever and so I’m chalking it up to that, but when do I need help? (As it turned out, I was brewing a serious infection which bought me a five-day stay in hospital, and two weeks of IV antibiotics at home.)

Why is there so little understanding and warning for patients to warn us about the need for extensive psychological recovery with cancer?

Why is the medical system still treating patients as if their minds and bodies are separate entities? 

What is the chance that something was missed in my most recent mammogram because of all the scar tissue?

How can I rid myself of the fear of recurrence?

I find myself feeling guilty because I’m unable to work currently, even though I know I’m not well enough. I know that my employers are likely experiencing some challenges without me in my position, I know that even though it shouldn’t legally be this way, I worry my job could be in jeopardy one day if someone decides I’m out of time. The worry affects my sleep and mood. 

So yes, I know it’s been a while, I know I “should” be all better, but cancer just doesn’t work like that.

Thank you!

Feeling so blessed to have my Thrive Cards for Women Experiencing Cancer featured on the Dote Magazine Instagram page.

Five things that help me when parenting while ill:

    Parenting is hard at the best of times. Sleepless nights, crying babies, toddlers that change their minds with a moment’s notice, partners working out of town, and all the balancing that being a parent demands. Imagine adding illness to that list, and parenting becomes infinitely complicated. 

    I was diagnosed with breast cancer when my son was eighteen months old. I had not fully anticipated the challenges I would experience but I did learn about what’s truly important as a parent. I still struggle with my immunity and am often sick, so I find myself parenting a lot when not one hundred percent. Herewith, the things that help me parenting while ill.

    1. Accept help:
    When people heard I was ill, they truly wanted to help, but often didn’t know what I needed. I found if I let them know what I found helpful, that we both had our needs met. I had a dinner I didn’t have to cook and they were able to help. Allowing others to care for you is an act of kindness you extend to them. Perhaps it’s meal prep, babysitting, doing a grocery run, or helping clean the house. I needed people to play actively with my son while I was healing from surgery. It was hard to admit I couldn’t do it myself, but I was thrilled to see him playing and running and experiencing life as usual. It allowed me to focus on getting through treatment and getting better. 

    Another thing that I found useful was to get help via support networks online or in person to help manage the illness-specific situations I was finding myself in, and to help process the psychological aspects of illness.

    2. Banish guilt:
    Guilt is a wasted emotion and only robs you of peace. It was helpful to remind myself that I would not be sick if given the option, and that I was doing the very best I could.

    3. Embrace imperfection:
    I find in North American society, we tend to expect perfection from parents, moms especially. Heaven forbid our kid screams while shopping, or falls off a swing and we don’t come running with a medic. Lord help the mom who expects her kids to play on their own sometimes or sends them into the world in dirty clothes. I am attempting to forget about all that, which is not to say it’s easy. My child will learn from my mistakes and how I handle imperfection or situations when things go wrong. It will hopefully allow him to feel it’s ok to be imperfect too. Life will bring about disappointment at times and things don’t always go according to plan. It helps children to experience this in safe settings so they can deal with bigger upsets later in life.

    4. Be present:
    It’s normal of course that we worry about our children. Throw a potentially life-threatening illness into that equation, and suddenly you can find yourself be planning your funeral and wondering who will help raise your children. It’s impossible to prevent these thoughts, but I found if I could focus on what was right in front of me, it helped my mind not tell scary stories. Being present and staying in the moment presented an opportunity for creating lasting memories and truly enjoying them at the same time. A psychologist reminded me that even though I may be facing a challenging illness, and the future was uncertain, right now, in this moment, everything was alright. This really helped me to stay present when with my son.

    5. Care for yourself: 
    This may seem obvious, but I found my self-care was even less when I was initially diagnosed because I was away from my family lots during hospitalizations. I felt obligated to spare every moment I was home to be with my family and be doing things for them. I realized quite quickly that I would not be able to maintain this and had to set aside some time for self-care to keep myself focused on increasing my wellness. I found something that soothes my soul and brings me joy and I would find a little time for that as regularly as possible.
    Parenting will always be one of the most joyful and challenging experiences in life, and dealing with an illness adds to that. I continually remind myself that I am not alone and I don’t have to do it all perfectly. I’ve got this!