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!

    Make your new normal anything but:

    When you are told you have cancer, or you experience any life-altering event, people who have gone through it will tell you that your life won’t ever be the same but you will develop a “new normal.” When people said that to me initially, I wanted to yell or punch something. I was newly diagnosed and I was still holding on to the fantasy that I would quickly get treated, be totally cured, and that life would be just as it was before. No muss, no fuss! No changes to my tightly controlled life. Over time, I have realized that illness doesn’t work that way, and in fact, those people were right.

    When I was still undergoing active treatment, I didn’t have the energy to consider what my life could possibly look like post-cancer. I was surviving day to day and focusing on my physical health. 

    Once I was done treatment, I was left with physical and psychological side effects. I had a fear of the cancer returning, I worried about my career and how I was going to cope with the memory changes from chemo and the chronic, relentless fatigue, as well as pain and nerve damage, even two years after treatment.

    I was thinking about that phrase “new normal” and wondering what it was going to mean for me. What was “normal” anyway? As a meme I saw says, “it’s just a setting on the dryer.” 

    Cancer had left me with things I didn’t want, but cancer also gave me something else. It left me with a very clear inner compass that kept pointing me towards my joy. I was no longer searching for normal, I was looking for the extraordinary. I have always appreciated my life and all the blessings in it, but cancer reminded me in a very real way how short a time we have to live. I thought about what had been missing from life before cancer and the answer was clear: balance. I had limited balance between the different areas of my life. I was all about work and family, and was ignoring my own health, and my need for joy, passion and peace. 

    I started writing, created decks of affirmation cards for women with cancer, explored my creativity, started a blog, have written part of a book, and am living my truth. I worry less about what others think or say. I am focusing on myself and my family and what is a priority to us, but I have also learned that I have to include myself in that view. 

    My new normal is not the same as before, and I don’t want it to be. It brings me much more joy than I could have ever imagined. I have many goals I am setting and without cancer, I likely would have stayed in my safe little place in life.

    So I invite you to not wait for a life-altering event. Consider what’s missing right now and what you want in your life. What do you want your new normal to look like? What can you not do for one more minute? What childhood dream have you abandoned? The things you discover might lead you back to your self.

    If Cancer patients ruled the world: (Reposted from 2016)

    -Popsicles would be available all the time in chemo 
    -Appointments would run on time
    -Retail therapy would be covered by health insurance
    -No waiting long periods for scan and test results 
    -Chemo has added anti-aging cocktail to ensure dewy, youthful glow after each round
    -Hospital gowns would cover your bum and come in all shades so you can wear something moderately flattering
    -Free wifi that works anywhere in the hospital
    -Wig consultant comes to your home and supplies wigs free of charge 
    -Unlimited supply of anti nausea meds available 24/7
    -No waiting lists for surgeons 
    -Two words: IV margaritas
    -Art and music therapists on call
    -Equal research and resources for all cancer types
    -Magical force field to deflect well-meaning people who tell you about their friend with the same kind of cancer who died, or who was cured by Himalayan salt she found on the Internet
    -All radiation therapy to be given at a five star spa so you don’t have to go to the hospital daily for weeks on end. All paid for and offering a full menu of spa services, room service and unlimited HBO
    -Free treatment for everyone, regardless of geography
    -Access to full time life coach to help put life back together once cancer eradicated.
    And most importantly, a total cure for everyone.

    Sending big love to those living with cancer and its aftermath.
    To support women with cancer, please go to my Etsy site and purchase Thrive Cards for Women Experiencing Cancer. Every deck purchased allows me to donate a deck to a woman undergoing cancer treatment.