HELLO FRIENDS!

It is time to dive into another topic a lot of you have asked me for: TREATMENTS! Warning, it is not always for the faint of heart. But…it is REAL. It is also long. I tried to condense but treatments can’t be talked about briefly. This post is full of information I would have liked to have known before my treatments. I was lucky, I have a wonderful cancer community that gave me lots of tips, tricks, and resources. That is my hope for this post.

I think one of the biggest misconceptions about cancer is that all treatments are the same and that once treatment is done, you are done with the effects of the treatment. #FakeNews

The reality is, like a cancer diagnosis, although there are similarities, everyone’s cancer journey is different, so is everyone’s treatment plan.

I have had two very different cancer journeys with two very distinct treatment plans AND two very diverse career paths during those treatments. I want to talk about the career piece during these stories as it is a big question, I get asked a lot, can you work with treatments? Again, everyone is different, and I would ALWAYS differ to what a professional tells you but I will share my stories so you can see the different perspectives my treatments took with my career.

Reminder, I am not an expert, or a professional in the field of cancer but always happy to share my stories in hopes that it will help others through their own cancer experiences.

There is a lot of information to share on my treatments, it may take a few posts over time. For now, I will try to give you the highlight reel hopefully with enough info, pics, and resources to paint a decent picture of what my treatments were like.

First Cancer Journey (2015)

How did it happen? The first time I got cancer was in 2015. I was working full-time in a high-pressure, high-profile role in Corporate. I loved my job, and I was a workaholic who didn’t know how to go into slow gear. Not even cancer could stop me. As I have shared in my IGTV stories, when I found out I had cancer I actually questioned if I could go back to work within a week after MAJOR SURGERY. It was not one of my finest moments.

For that cancer experience, after my major surgery, I was given Preventative Radiation. Although they had removed my cancer with my surgery, and it was caught early (I was staged at 1C) it had been found in more than one spot. Therefore radiation, again from a preventative perspective versus it targeting something, would be the best treatment plan.

How do you start? When you have radiation one of the things people don’t always know is that you have to get tattoos to direct the radiation. They aren’t huge, just little dots but they are always with you. When people ask me how many tattoos I have I always add them to my number! Like my surgery scars, I EARNED them after all. (I will also one day soon also tell you the story of getting my tattoos in my IGTV Radiation Revelations series because it is dozy!)

I had to have 25 treatments so every weekday for approximately 5 weeks. Sessions were short and sweet. VERY daunting at first, it is a massive machine shooting radiation into your body directly at my 4 new tattoos after all! But the radiation technicians were wonderful and really helped me through it all. It was a fairly painless process.

Were you able to work during it? I DID choose to go back to work while I had radiation. I had a very supportive boss, peers, and an amazing team.  And like I said, I loved my job. It was good for me to feel I was contributing something and not thinking about my cancer 24/7.  I didn’t really tell a lot of people about my first cancer, so it did require me to tell a few more than I had wanted, that was probably the hardest part for me. I needed my team to know why I was running in and out some days or had to work from home some days or why I was running to the bathroom, a lot! Again, I worked with AMAZING people, so I felt very supported. If I could back in time, would I still make that decision to go back to work during radiation? Probably not. The reason being has nothing to do with work and everything to do with me. Even though I was strongly encouraged by my boss to take it slow, I couldn’t turn off my workaholic ways. From years of therapy, I have now learned that I was just trying to “get back to normal” and be “done with cancer” but as those with cancer know, you are never done with cancer. So I do wish I would have taken more time to “be” and “adjust” to my new normal. That said, if you have a good work support network and are able to actually slow down while you recover, I do think it is possible to do both.

If you do decide to go back to work with treatment and/or you are worried about work after cancer here are some great resources:

I do offer a program that helps guides you through Your Career After… a significant life event, it doesn’t just have to be cancer. One day I will do it in person again, but right now it is virtual and just as awesome as a live version, just different! I am working on some new dates so watch my site for upcoming details:

JAYEM Workshops

There is also a great Canadian site for “CANcer and Work” that my cancer community has found VERY helpful in returning to work:

CANcer and Work

The Cancer Society also has great resources on Work and Cancer including a helpful webinar on the topic:

Work and Cancer

Back to radiation…

What does it feel like? I guess it depends on where you are getting it. Mine was targeted around my lady parts. I don’t recall “feeling” radiation but of course, I did have side effects.  You typically see your Oncologist once a week to check in on how things are going and to help you manage your effects.  Mine were things like going to the bathroom constantly. I had to go on a BRAT diet (bananas, rice, applesauce, and toast) to help me not go to the bathroom as much. My stomach was sensitive to certain foods. I was tired. So very tired, especially as the radiation started to accumulate. I did lose some weight, nothing major. Someone at work did come up to me and say, “you look great what’s your secret?!” I felt like saying “cancer!” but I didn’t want to do that to her, it was my choice not to tell many people I was going through cancer, so I had to deal with the consequences of that.

What happens after radiation is over? Well, don’t quote me on this, but I believe my oncologist told me radiation can stay in your body for up to 5 years. Of course, you progressively get better if all goes well, as it did for me, but still, the effects can be long-lasting, even a lifetime. I had to start physio, which for me involved dilation that I did regularly for about 3-4 years. I have a lot of scar tissue especially on one side so I still experience the effects from my surgery and radiation that I am still in physio for, and will be, forever.  Probably the biggest lifelong impact for me was my mental health. As someone who has never been good at sharing, and REALLY good at pretending everything is good, when it wasn’t always, my very wise oncologist recommend I started going to therapy at the Cancer Centre. He valued my positive attitude and felt it was a big factor in why I was doing so well, but he worried I wasn’t really processing the fact that cancer never really leaves you. So I started one on one therapy with a social worker at the cancer centre 6 years ago and added in group therapy with a social worker at Gilda’s Club about 4 years ago. It changed my life, for the better. I am 6 years post-radiation and I still have stomach issues. Sometimes food just doesn’t agree with me. Of course, I will have my radiation tattoos forever. Sometimes I forget when I come across one of them and go, OMG what is that? Then I remember 😉 My energy definitely improved over time. The biggest “leftover” from radiation (and I would say ANY type of cancer treatment) is the worry. My therapist describes it like this “cancer is always on your shoulder, sometimes it is right up front, sometimes it is further back, but it is always there.” Every ache, every bump, anytime something is off you think…it is back.

When you get done your radiation you get to “bang the gong!” It may sound silly but being able to celebrate something so life-altering is a beautiful experience. Here is a picture from my “bang the gong” day with the wonderful radiation technicians who got me through every day including my Mom who was with me every single day for every single treatment.

Like all treatments, once you are done you go into a “check-in” pattern. Typically the first year is every 3 months, then graduates from there until your 5-year mark, and then you are “free.” Although you are never really “free” from cancer.

I didn’t make it to my 5-year. My 4-year check-in was August 2019, and I discovered my cancer reoccurrence in November 2019. So close…

Second Cancer Journey (2019)

How did it happen? The second time I got cancer in 2019, I was an entrepreneur thriving in the “gig” economy. I  had my own consulting business with regular clients. I was a part-time professor for Georgian College, teaching 1-2 classes a semester (often back-to-back semesters.) I also did corporate training for Georgian College. I was about to start facilitating courses for Morneau Shepell and I had had a very good opportunity for a new full-time role that I was excited about it. As I said before, the worry of cancer never leaves you so the second, and I mean SECOND I had signs of it being back I took myself to an emergency room. November and December 2019 were full of biopsies and tests. We had originally been told it was probably a lower grade, so I had hoped I could do my treatments (which was going to be more invasive radiation called Bariatric radiation along with oral chemo, still chemo, but a milder form than an IV chemo) and work.

Were you able to work during it? Unfortunately, when my biopsy results came back and it was more aggressive than we had thought, my hopes of working through treatment went out the window. I had to give everything up, and I mean everything. Although as an entrepreneur I have always paid for my own health insurance, I still wasn’t able to work for at least 6 months. I wasn’t able to drive for almost 7 months. I had to make the tough decision to sell my beloved condo. I was fortunate enough to have a Mom who offered me up 2 rooms in her house. We had been looking to buy a house together for a couple of years. Not for any reason other than we enjoyed each other’s company, it would cut down on expenses (more for me than her!) and it was a smart option for down the road, waaaaaay down the road, when my Mom would need my help to look after her. But then my cancer came back. It forced my hand. I needed my Mom’s help to look after me. So I needed to sell my condo in the middle of a pandemic while going through chemo LOL It all worked out and I absolutely love my living arrangements now. It was worth living in the middle of someone else’s stuff while living out of a suitcase for 6 months. Honest.  But when I say cancer changed everything, it really did.

How do you start? For this cancer experience, my treatment plan was IV Chemotherapy. Not all chemo is the same, even if you have similar cancer. So many factors are involved. My chemo was two different chemo treatments. One took about 1.5 hours to go through, the other took about 3.5 hours. So my chemo days were close to full-day treatment. I went once every 3 weeks and I had 8 treatments. Here is a great explainer video from the Cancer Society to help you understand chemo:

Understanding Chemo

As my veins were difficult to access, I was required to get a PICC line. I will do a separate post on “her” because she deserves it! It did not hurt having her inserted or having her “in you” for close to 7 months, I was thankful to have her for ease of the chemo, drugs, and blood work that needed to be done so often. But she could be a pain! Meaning, I needed to always keep her covered for showers, I had to get her “cleaned and flushed” at least once a week at a clinic and it is kind of hard to hide the fact that you have cancer when you have this huge, covered tube in your arm. In fact, one of my rare times out during the end of chemo taking my car in for service (first time driving in months!), the service guy (who I have gone to for at least 10 years) looked at me up and down (cap, no eyelashes, eyebrows and PICC line) and pointed to his face and said: “Um…is everything okay?” All I said was “yep!” and carried on. I hadn’t told hardly anyone at that point, I wasn’t going to start with him LOL

The other thing I don’t think a lot of people realize about chemo is the extra drugs you need to take. The night before you chemo you would take steroids, and the morning of you would take anti-nausea and an antihistamine.

A quick aside: I am a believer in science and natural approaches but during chemo, you are unable to take any vitamins (unless prescribed by your oncologist) as they could counteract the effects of your chemo. Yes, I have heard a lot about how Vitamin C cures cancer. Let me say it in writing, in my experience, that isn’t true. Of course, if someone going through cancer wants to try it, I have zero judgment, I understand completely the need to do all you can to rid yourself of cancer. That said, those who have never gone through cancer touting with confidence that “Vitamin C drips cure cancer” makes me shake my head. The amount of misinformation that is out there on most topics, including cancer (especially on social sites like Facebook) that people share irresponsibly without research or facts to back it up is incredibly upsetting, ignorant, and harmful. I will tell you the second I got permission from my oncologist to work with my Naturopathic Dr. who specializes in oncology again, I jumped all over it. Vitamin C is one of my supplements but sadly, as far as I know, it hasn’t been proven to cure cancer.

Back to chemo…

We are also given a nausea pill we can take throughout our chemo recovery, and of course, you can take over-the-counter Advil or Tylenol to manage pain, as long as you take your temperature first, they don’t want you to mask a fever.

We are given a “chemo card” for our wallet in case we need to go to an emergency during our treatments.

Like with radiation, we were given a number we can call if we have questions or concerns that are manned by nurses to help us through our chemo effects. There are lots. Vomiting, diarrhea, constipation, lack of appetite, pain management, and aches to name a few.

What does it feel like? The chemo itself is anti-climatic. I was so nervous the first time, but I didn’t really feel the effects until after. I would get my “chemo flush” each time. They really monitoring you for an allergic reaction. I never had one, at least not a major one, but they suspected my chemo flush was a subtle reaction. It would mostly be in the face and chest and last the first few days post-chemo.

This is how a typical week with chemo would go. My chemo was always on Wednesday. So Tuesday I would go in to get blood work and a check-in with my dr. (First 2 months in person, following the Pandemic declaration then the check-ins would be over the phone.) They would review my counts and make sure I was okay to do chemo. It is common to have chemo delayed and/or have to have a blood transfusion prior to getting chemo. I was lucky, mine was never delayed. About ½ through I did have to start getting magnesium and/or potassium drips added to my chemo (and an extra hour to run that through) as those #s did start to deplete for me, but I never had to miss a chemo session.

Once you were approved you took your chemo meds the night before. Day of chemo you would take your chemo meds. Once you were at chemo, they would also flush your PICC line and run some meds through you, to help with allergic reactions. Then they would flush again (your PICC line was flushed in-between each bag that ran through your line.) Then your chemo would start. They always ran my bags separately (so 45 min, flush, 3.5-hour, flush, 1 hour, flush) although on my last session they ran my two chemo bags together which was nice, saved some time.

During chemo, especially as time went on, I slept a lot. I had most of my chemo treatments during a pandemic, so I was solo for the most part other than the chemo nurses. Just like my radiation technicians, my chemo nurses were FANTASTIC. It was pretty uneventful, to be honest. Other than my last couple of sessions, I would get dizzy from time to time when I would get up and walk around or go to the bathroom, but thankfully it would pass. As a side note, it is good to stay current with your family dr. during this, all as my BP would go up and down (normal) during chemo and my family dr. was the one that would help with that.

I would say the hardest part of chemo is the days following chemo. I did my best to stay active, they recommend 30 minutes a day. After my first chemo session, I was actually still doing my daily cardio, until the next day when it really hit. I drank lots of fluids and I ate whenever I could, my appetite was actually pretty decent, but I did start to lose flavours of food. It is fun when your chemo systems are similar to COVID-19 symptoms when you are going through chemo during a pandemic (insert eye roll!) Days 2-4 post-chemo were my toughest (although towards the end it was Days 1-5.) I still did my best to be active the best I could. Which meant walking around my place, and doing my chemo crawl up my stairs. As time went on most of my energy was spent taking a shower. But it was important for me to take a shower and get dressed every day. And I did, every single day but one.

There were times when I  felt like I had been kicked in the stomach over and over. I had aches and pains in the oddest spots. But I also have a high pain threshold I am told by my Drs. so I was able to manage it with the odd Tylenol.  I tried not to take it if I didn’t have to. I think in my last 2 sessions I went from 2-4 pills the entire post-chemo to 4 pills a day, each day post-chemo to give you an idea.

I was sick during my first chemo but then someone in my cancer community suggested hydration, so after that each session I had a home nurse who gave me hydration and gravel drips for 4 days post-chemo. It SUCKED being hooked up again for most of the day post-chemo BUT it helped so much with nausea and constipation I was experiencing, so it was worth it. Even that time my hydration stand fell over and my blood starts getting sucked back up through the tube (graphic image below.) Don’t worry it happens, all good, they tell you to want to do to stop it, but yep, I still almost had a heart attack when it first happened!

Sleep was huge for me. I have never been a great sleeper, and I NEVER napped unless I was sick, and before cancer, I was rarely sick. So I stupidly tried to resist at first, but I had no choice. Sleep took me over, and fast. As chemo went on, I slept more and more. I felt the more I slept the faster I would heal; I think I was right on that one.

I lost all my hair. All of it. I won’t go into detail here as I wrote a whole post on it if you want to learn more. Blog Post: The Hair Issue.

The other piece was isolation and having to be SO CAREFUL because of your severely compromised immune system.  As soon as I knew my cancer was back in December 2019 I went into isolation. We ordered masks, gloves, and hand sanitizer long before the pandemic was declared, thank goodness. So I know most are coming up on the 12-month anniversary of living the rules of the pandemic, my mom and I are going on almost 16-months  If you want to learn more about cancer during a pandemic, check out my Blog Post: Living with Cancer During a Pandemic.

Once again, the hardest part for me was the mental health piece. Being told you have advanced cancer is traumatic. How I was told that news was traumatic. (That event will be its own blog post one day.) Realizing people you thought would always be there for you but decided you weren’t worth their time or effort, is traumatic. Being fiercely independent your whole life but having to stop working, sell your condo and lose your independence while you go through treatment, is traumatic. As someone who prides myself on my positive spirit, and in fact has been praised for that attitude during my cancer journeys, I was scared I was going into a really dark place. I am used to helping others, not asking for help but I REALLY needed to get my mind some guidance. (Another subject that deserves its own blog post one day.)  I really struggled with telling people once again, especially because this time I couldn’t hide it physically. Trying to hide it was more stressful than when I eventually did come out and tell people (8 months after I knew it had returned and right after I finished 6 months of chemo.) I was grateful I had already begun a very strong therapy regimen with my last cancer that I had maintained. I am not sure I would have been able to make it through as I did without the strategies I have learned from therapy and the cancer community I built from my group therapy. As they say at the amazing Gilda’s Club Simcoe Muskoka often, “You are not alone.” I am so grateful for that fact.

When you get done your chemo is done you get to “ring the bell!” Due to the pandemic, my mom couldn’t be there, but the incredible chemo nurses made sure to capture the three, yes THREE times, I got to ring the bell! (Another story for another day!)  I have put together some clips of my gong and bell moments you can see in REELS on my Instagram. They are emotional moments. It is like you have been through a battle, and you have, so being able to commemorate it, is really special.

What happens after chemo is over? You start to build up your counts again. Slowly but surely if all goes well.  Your hair will start to grow back, you will start to regain your taste buds, you will get some of your energy back. As with radiation, there are things that stay with you for longer periods including the rest of your life. I have neuropathy in my feet and hands. Mostly my feet, my toes, and the ball beneath it, I can’t do a plank anymore if that helps give you a visual. I also have it in my knuckles, but my feet are the worst. It really hasn’t improved although I have tried a lot of things. It may regain some more feeling over time, but it also might not. My pelvic core is extremely weak. Lucky for me I have always loved fitness and I am back to my 4 days a week workout, and I work with an amazing physiotherapist who specializes in the pelvic core, and I DO THE WORK! It may not ever by 100% but I am confident it will get stronger. I have a PICC scar from where they removed my PICC a few weeks after my last chemo. I love my scars.  My stomach is very sensitive, more than it was before. I still need to be on supplements for magnesium (it has been my Achilles heel with chemo!) I have an incredible Naturopathic Dr. who helps me with that, along with my amazing Family Dr. It truly takes a village. My exhaustion is still with me. My energy has gotten better but it isn’t what it once was and probably won’t be. I am adjusting to my new normal and have adjusted my career to allow me to still do what I love but also make sure I am taking care of me. There is something called “Chemo Brain”, or “Chemo Fog” and it is real. In fact, it is getting worse. I do my best to keep my mind active with work, reading, games, and I take supplements to help with it, but it is another thing “gift” from cancer. I still nap from time to time. I stupidly try not to, but I have no control, it happens. I still worry. A lot. Way more than before. Since the expectation is my cancer will return, I am always on the lookout to make sure that doesn’t happen and if it does, I am on top of it. Otherwise, I feel really good. Grateful. Hopeful. Positive. I have a mantra I am always saying while rubbing the worrying stone I brought home with me from Ireland and writing daily in my 5-minute journal, “I am all good. I am all clear. I am happy, healthy, and strong.”

Like all treatments,  once you are done you go into a “check-in” pattern. I now live with cancer, which means my cancer is being controlled/managed versus cured, but I still believe in miracles. Every 3 months I go for CT scans, blood work, and then have a virtual check-in with my oncologist. The anxiety around the 3-month check-in is no joke. It starts the month of the test and lasts until I talk to my oncologist. No matter how good I feel, no matter how much I say or write my mantra, I feel so very anxious every time. I am going to try recording my next 3-month visit for my Instagram REELS or IGTV to show you how it goes, make sure you follow on my social to see it. I suspect my check-up timing will be every 3 months for a long time. They call it a break from treatments. When you have advanced cancer the thought is at some point you will be back on another treatment. Again, I believe in miracles, but if it happens, I will deal with it like I always do.

That, in a VERY long summary, has been my treatments so far. I have done my best to share with you what happens, but I know I have left out stuff and/or could have expanded in some areas. I will for future posts. I hope it helps someone going through it, or about to go through it, or someone supporting someone going through it, or just someone curious about it.

What have I learned from my treatments? That I am strong. Stronger than I ever thought I could be. I have always prided myself on my independence, resilience, and the ability I have not to wallow or act like the victim. I think these journeys have reinforced those facts. When you are at your worse those who rally around you consistently are your people. I am so lucky to have a solid group of people who check in on me always, make me laugh, and always have my back. I know who my people are. If you have to have a caregiver, I hope you are lucky to have one like mine, my Mom. I struggle with the fact that when she needs me to help her, I may not be here, I pray with everything I have that I will be here to return the favour. She is the best. Her time looking after her kids should be done, yet she has never really had a break from us needing her help. She says she doesn’t mind, and wouldn’t have it any other way, and I know that is her truth. Still, I feel guilty about it. That said I am grateful. She has always been with me every single step of the way on both journeys. Now we are roomies, more for me than for her, but it is helpful to have someone to split expenses with and just have company especially during these times. I am 100% #BLESSED!

Follow me on my social @JAYEMBarrie or check out my website JAYEM website to stay informed on what I am doing. Share your questions or comments either in the comment box of my Instagram posts or in a DM. I am always happy to chat with you about my cancer journey and/or my career journey.