HELLO FRIENDS!

This one was a hard one for me.

It is one that I have been thinking about since March 11, 2020, which was the day after my “halfway through treatment” check-up AND it was also a chemo day for me. That’s right, I was sitting hooked up to the poison that was saving my life when the Pandemic was announced thinking “OMG what does this mean?!”

I realize I was not the only one with that thought going through my head when the pandemic was officially declared. Heck, I wasn’t even the only one going through cancer (or some other disease that required hospital visits with a compromised immune system during a Pandemic) with that question going through their heads. We were all shook.

The fact was I was actually ahead of the game when it came to our first lockdown. Since knowing my cancer was back in late 2019, I had already been self-isolating on the advice of my oncologist. I had already purchased masks and gloves ahead of the frenzy (thank goodness!) I was already in my “pod” having left my condo in a hurry with my devasting diagnosis and setting up shop like a squatter in my mom’s home, living out of a suitcase in the middle of my brother’s stuff for 6 months. Yep, 6 whole months! But trust me I was SO grateful to be able to have a place to safely land while going through such a traumatic life-altering year. And I mean, how many clothes or products did I really need for 6 months?! I was in lockdown, in treatment, bald, only wearing tights, t-shirts, and PJs! All I REALLY needed was my cat and my Mom!

I am also an introvert by nature. My career has always been a very social one. For 20+ years I have always had a role in which I always had to be “on “and I love it, but it also drains me. I thoroughly enjoy my alone time. Yet, even as an introvert I still miss “my people” very much. Thank goodness for technology but it isn’t the same.

It sucks. Just like everyone else going through this very difficult year, we all have things that we miss or struggle with, none of us have been immune from that. We have all suffered from sadness and loss. I think anyone who thinks otherwise, or worse, feels their struggles are more difficult or more important than anyone else’s, is wrong. This post is NOT about claiming “I win for the saddest story during a pandemic because I had to go through cancer.” Not even remotely. None of us win during a pandemic.

This post hopefully will give you a perspective into what it is like to go through cancer during a pandemic. I hope it provides an understanding to a different viewpoint to understand why “following the rules” or “restrictions” such as travel bans, or school closures, or lockdowns, etc. have impacts beyond just trying to avoid getting or spreading COVID-19.

Disclaimer: I know these times are stressful for people. As an avid small business supporter (before, during, and will be after, the Pandemic) my heart goes out to those who are struggling with their business or to find work. I know those who are social also struggle with being isolated for a longer period of time. Not to mention those who are suffering from abuse or addiction or mental health. There are so many sides to this, and I would be ignorant to not think about those people who are suffering, a lot of the time, in silence. I also get people have bad days and aren’t always their best. I can speak from my own experience over the years when people had no idea, I had cancer, you don’t always know what is going on in someone’s life.  I am not an expert or a professional in this area, I can only speak to my own personal experience and hope those who are struggling are reaching out to the different resources that are available to help.

CMHA Site

Living with cancer during a pandemic involves many emotions. 

I have been very disappointed in the lack of respect or understanding I have witnessed in people sharing their “thoughts” on various social sites during this period. A good friend of mine said this about that, “I can’t unsee what I have seen.” I feel that. I have seen way too many people expressing their thoughts without proper information, understanding, or willingness to understand someone else’s viewpoint. That to me is tragic. Sometimes we have to agree to disagree, and that is okay, but there are definitely some things that are important to be steadfast about. For me, it is what I am about to share.

As a people pleaser by nature, I can handle conflict, but I don’t love it. I am not a combative person; I am someone who thrives in positivity. I swallow my true feelings, too much. But 6 years of therapy has taught me the importance of sharing how you feel. I am very cautious when I am brave enough, to be honest with my thoughts.  I am empathetic which is a great thing to be, most times! Yet, it also means I am very sensitive and sometimes worry more about how others feel versus myself. So, when I am about to dive into a tough conversation or writing something like this, I take great care to prepare and ensure that I am doing my best to understand someone else’s viewpoint knowing I won’t always be right and using it as an opportunity for me to learn. I always figure if you approach something with that much thought, it can’t go wrong. But that isn’t always the case.

During the start of the pandemic, I was asked a question regarding a particular situation that involved some of the facts and restrictions around the pandemic.  I thought long and hard about responding. I didn’t want conflict especially with people I care very deeply for. Alas, living with cancer during the pandemic has forced me to be brave and have difficult conversations that I didn’t necessarily want to have.  I thought it was important to respond for two main reasons.

1. When someone matters to you, you need to speak your truth. My intention was to help them understand my viewpoint to the best of my ability.

2. Boundaries are important. Something, thanks to therapy I have learned is critical. I was in the midst of a very difficult time in my life, literally fighting for my life, so I thought it was important for them to understand not only my perspective but hopefully understand why anger and negativity didn’t have a place in my world. Ever, but particularly during this time.

I took great thought and care composing my response, trying to understand their viewpoint although very different from mine didn’t mean it didn’t have importance to them, and hoping they would take the time to understand mine. It did not go well. It is a good example of intention versus impact that we all need to keep in mind when we communicate.

As much as I tried to do right by answering their question honestly and respectfully, they did not receive it that way. In fact, they haven’t talked to me in almost a year, other than to make some disparaging comments regarding my character and intentions. As a result, this particular relationship has changed because of the pandemic and my views on it. That breaks my heart. 

They have a right to feel how they feel. I can’t control what other people feel, think or do; I can only control my own feelings, thoughts, and actions. This has been a big learning for me during the pandemic that I continue to grow from. (Truthfully, I have taught this for YEARS to many team members, peers, leaders, clients, and students but never really learned the lesson myself until I was living with cancer during a pandemic.)

I can only explain my vigilant following of the guidelines and restrictions like this…

I am living with a disease that will one day more than likely take my life. I hope not for a very, very, very long time or by some miracle, thanks to research, ever. But this is my reality. I know that is hard to hear, trust me it is even harder to live with.

When you are living with a disease that can steal valuable time from you, you want to do your BEST to try to extend that time as long as possible. It is also important to note you don’t have to have a disease to value time, as my current Oncologist wisely told me “None of us know when we will die.” Time is a precious thing to us ALL. I think sometimes those living without an illness or not having experienced the impact from someone living with one, can forget that very real fact.

Maybe it is because I know the fragility of life that makes this issue so important to me. The fact that I am immune-compromised (severely during the start of the pandemic) and I had to hear lots of talk about conspiracy theories, or violation of rights from wearing a mask, or (and man I wish I were joking about this one…) people complaining about how they missed their yearly travel or big event because of these unfair restrictions, etc.  Look, we all miss these things NO QUESTION. Each and everyone one of us is missing out on lots of important “life” events. It is all very sad.

I am scared about living with cancer during a pandemic but not for the reason you may think.  I am NOT scared that I have to go to the hospital so regularly for treatment or tests. Or even when I was going for my chemo which was depleting my immune each time I went during the height of the pandemic. I frankly never feel safer than when I am in the hospital because I know the rules are being followed (as much as they can be, nothing is perfect.)

What I am scared about is how people have been treating other people during this time. I realize this goes both ways. Trust me I have TRULY tried to understand how someone believes this is a government conspiracy and that wearing masks takes away someone’s rights. But I am going, to be honest, here, I just can’t. This one of those areas we will need to agree to disagree on, and I am 100% okay if you unfollow me because of it.

I have witnessed a lot of “justification” around behaviour that actually puts lives in danger and yes, has put us in the position we are today with this virus. That terrifies me.

Empathy is such a powerful tool that so many are lacking. I have taught empathy for 20+ years, it is one a lot of people struggle with, the pandemic has emphasized that fact. Being able to understand another viewpoint is a gift. But that means we need to be willing to have an open and honest dialogue where we stick to facts and try to limit our emotions the best we can. Frankly, we need to do the thing a lot of people aren’t willing to do…listen to one another.

Let me share a real-life example that might illustrate best why it is so tough living with cancer during a pandemic.

I have to get tests regularly for the rest of my life. I am grateful for them as they help us manage/control my cancer. The tests are easy enough, it is the waiting for results that is the hard part.

Back in October, the day of my first virtual 3-month check-in with my oncologist since treatment, I was full of anxiety. I wanted to go visit my Dad at the cemetery to help calm my nerves (where I was almost attacked by a fox, another story for another day, but truly I wasn’t having my best day at this point!)

I stopped off to get some flowers to bring with me. Fully masked, following the rules into a grocery store. I like to use self-checkout as it is less contact. At this point, I still “look” like I have cancer (I guess I always “look” like I have cancer since I am living with it so maybe it was more “looking like I was still in treatment with my hair starting to grow in”) I hear this woman a couple of machines down from me yelling at a grocery store clerk for asking her to wear her mask properly. The grocery store worker was VERY kind in how she was asking. This went on for some time. I finally intervened. I nicely asked the woman to stop yelling at this person doing her job and to wear her mask. She told me to mind my own business. I explained it was my business as I am also impacted by the fact, she isn’t wearing a mask, as is everyone she comes into contact with. She rolled her eyes and said, “OMG YOU ARE ONE OF THEM!” and then proceeded (mask still down around her chin while the grocery store clerk and I remained FAR back with our masks on) to ramble about conspiracy and HER rights. FINALLY, I lost it and said, “Enough. I have cancer, be a decent human being and wear your mask.” She then told me the reason I had cancer was because I have bad karma.

Yep. Buying my dad flowers for his grave while I anxiously wait for my test results to tell me if my cancer is spreading. THAT is the kind of awful behaviour that has been happening out there for too long. I also shouldn’t have to tell a complete stranger my personal business to hopefully get them to do the “right thing.” (Note: I had a GREAT 3-month checkup hours after her vile behaviour so proof, she was WRONG about my karma, but she best check her own!)

When you don’t follow the guidelines, it isn’t just that you can get or spread COVID-19. I can only speak to a cancer patient experience, but I know there are lots of other areas of the health care being impacted. For cancer patients  CRITICAL things like research, trials, sometimes treatments, and surgeries are all impacted by COVID-19. It is literally jeopardizing the lives of more than people who get the virus.  Not to mention if someone does get it with a compromised immune system their outcome isn’t a great one.

Mental Health is another HUGE part of the cancer journey. Luckily for me, both Gilda’s Club and my therapy have moved online so I can still take advantage of their services but not everyone is that fortunate or even knows how to use the technology or have access to it.

When you have cancer time is everything. Maybe you want to go on a special trip or visit family who don’t live in the same province as you, or just hang with your friends. None of that can be done right now. One day you will all be able to do it again but “one day” has a time limit on it for some of those living with cancer.

I can say with confidence most people in my cancer community, even though they may not have the time everyone else does, are STILL up for the sacrifice because we know it is for the best for our community as a whole. We know the more we work together the quicker we can get back to establishing our lives again.

My best friend sent me this article as she felt it spoke to the concerns, I expressed to her about living with cancer during the pandemic. She was right. A good read to get some more understanding, from another viewpoint:

The loneliness of fighting cancer in a pandemic

Even though this post seems dark, I wanted to leave you with HOPE,  I believe things WILL get better. I feel we are moving towards better days, especially if we all work together and treat each other with kindness and understanding. Some people have lost their way and that is sad but there have also been so many stories of love and joy throughout the pandemic that has warmed my heart. There are good people out there. That is what I will focus on going forward.

I wanted to post this today (February 4^th, 2021) because it is WORLD CANCER DAY. I will paraphrase their message for this year (the link will have the full details) as I think it sums up best my thoughts on this subject:

“This is a day that unites people across the globe to raise awareness and spark action for a cancer-free future.

On World Cancer Day, we can all make a difference for people with cancer by doing our part to end the pandemic. Continue to wear a mask, practice physical distancing, avoid non-essential travel, and get vaccinated when its available to you. The fewer COVID-19 cases we have, the more likely it is that cancer care will not be impacted.”

World Cancer Day We Are Bigger Than Cancer

I don’t care if this sounds cheesy because I believe it “we are all in this together.” Whether you have cancer or some other disease, or you are healthy and just want to get back to living your life. The more we work together the better it will be.

If you have a question or comments about this blog post don’t forget to drop it into my comment section on this post for Instagram @JAYEMBarrie or send me a DM, I am happy to chat.