HELLO FRIENDS!

It is funny my last blog post was about the “In-Between” because the last couple of months I was really stuck there.

It happens.

We can’t have good days every day, and we can’t have surveillance periods that go seamlessly every single time.

It is the law of averages. (I think, math was never my strong suit!)

The reality is when you have been on a cancer journey for almost 10 years you are bound to have moments on that journey that don’t go like you think they will. My recurrence was one of those moments. The time it took them over an hour to get in my IV just for a simple CT scan was another.

There have been “blips” along the way. Check out a reel I made a couple of years ago about that very thing:

BLIP REEL

This brings me to my most recent surveillance period which started September 9th and ended October 28th. That is a LONG time. Typically the are 2-3 weeks MAX.

So what happened?

A lot of different things that I will touch on throughout this blog in the spirit of sharing information to help you or someone you love on a health journey. But I don’t want to go too deep into the details of what went wrong as I am trying to move forward. Suffice it to say, it was too long and it took a lot out of me.

Physically I am good to go until my next surveillance period in 5 months (I have surveillance every 6 months but since this one was so long, it has cut into my non-surveillance time and now my next surveillance period is only 5 months away), but mentally it has taken its toll.

What I want to focus on about this “blip” for me was what I did as a Health Care Advocate to ensure a couple of things.

1. That the mistakes that happened don’t happen again in the future for myself and those in my community.

2. That I am doing my best to take care of myself during this difficult time.

I talk a lot about being a strong Health Care Advocate for yourself, creating a strong Health Care Team to act as your partners on your health journey, and the importance of having a loving and thoughtful Care Partner to help you through. Here are a few blog posts I have created on these topics if you want to learn more on those topics.

Becoming Your Own Health Care Advocate

It Takes a Village

Caregiver(Although I prefer the term, Care Partner now.)

My most recent experience reminded me why these things are critical to my Health Care journey.

Let’s get into what happened, and the lessons I took away from it. #AlwaysLearning

One of the reasons my surveillance period was so long was because one of my scans, my MRI, was scheduled for the wrong time (in fact it was scheduled for the wrong year, 2025!) As I keep on top of all my appointments, I knew I needed to call in to have it fixed. They apologized, took accountability for the error, and fixed it but unfortunately, the only time to get it in before my oncology checkup was about 2 weeks before my CT scan which added to the extension of the surveillance period. Not a huge deal, I was just grateful to have caught it in time and that I knew who to call to get it fixed.

The Lesson: Stay on top of your appointments. Mistakes happen. We can’t just assume it will go as we are told it will. As partners in our Health Care journey, we have responsibilities as well.

The next issue that happened, that I didn’t catch until I went in for my CT scan, was that my bloodwork wasn’t ordered. I typically get that done with my CT. That led to a very frustrating conversation with a helpline, and not the answers I needed to hear, or the help I needed,  which set me off on a spiral during an already stressful surveillance period. Scanxiety is real!

The Lesson: Be your own Health Care Advocate. Be respectful always but know your rights as a patient and fight for them. I don’t love confrontation, and as a recovering people pleaser this was a particularly difficult piece for me to deal with but I knew it was critical. I won’t go into details but know that I did escalate this interaction not to “get someone in trouble” but to hopefully help educate someone on how to handle a situation like this in the future so that it doesn’t happen to someone else in my community. I think it is important to understand intentions versus impact. I am quite confident the person’s intention wasn’t to upset me but the impact was they did, significantly. Sharing stories is a powerful tool for learning and growth if you are open to it.

As a result of all of this added stress, I was struggling, mentally. I knew I needed help. I always have a session with my therapist during my surveillance period to help me with my Scanxiety. We agreed it would be a good idea to see her more regularly as I took care of myself during this difficult time. I also decided to go back to group therapy. I had given group therapy up once my cancer recurred but I knew I needed to be surrounded by people who understood better than most, what it was like to live with cancer. I also gave myself space to breathe and heal. I have been mindful of my time, allowing myself time to rest and recover.

The Lesson: There is no shame in getting help, whatever that looks like for you. My therapist is a HUGE part of my Health Care Team. So is my cancer community. Understanding I am not alone and having an open mindset to listen and learn as I take care of my well-being is key. So is being provided with strategies that help me cope during difficult times is a game changer. Being kind to myself, setting boundaries, and allowing myself space to heal was the most important thing I could do for myself.

Due to everything that had happened, I also needed to have difficult conversations with both my Oncologist and my GP. Although they didn’t necessarily give me the answers I wanted to hear by having these conversations allowed me to ensure I set the tone for open and honest dialogue as partners in my health care. We might not always agree with each other, but as long as we are working towards the same goal – my health – then I can deal.

The Lesson: You can do hard things! Your health is so important that you can’t sit back and let it happen to you. You need to be an active participant in your health care and that means that sometimes you have to say “I don’t agree with…” to people on your health care team. It doesn’t mean you don’t respect them. I would argue it means you respect them a lot if you are willing to be open and honest with them. To have a true partnership this type of dialogue is critical.

Finally, because of all of these things, I had to push back my appointments for the other piece of my Health Care team. I believe in a very holistic approach to my health care. My team has my Pharmacists, my GP, and my Oncologist but also my Therapist, my Naturopath, and my Physio Therapist to name a few. I always “close off” my surveillance period with a check-in with my Naturopath where she reviews my bloodwork, scans, and all the other material I provide. I am an anal-retentive Virgo so I have charts on EVERYTHING – my weight, my inches, my sleep, my blood pressure, my blood sugars – EVERYTHING!

This appointment is just as important as any of my medical appointments so I was very frustrated it was delayed so much because of all the issues with my surveillance period. When I was finally able to have my time with my Naturopath I felt a bit of peace, finally. She also validated my feelings, and my actions while helping me prep for what’s next.

The Lesson: You and your Health Care Team are just that – a team. You work together towards whatever health care goal you have. For me, my goal is simply to live. So I make sure I am very clear on what that goal is and that I am surrounding myself with people to help me do just that. I don’t surround myself with people who say what I want them to say, I want the truth, but I also want to be heard. Choose your team wisely.

It is important to note that going through this difficult period without the support of my amazing Care Partner, my Mom, and my bestie, Astrid, would have been impossible. They listened. They validated my feelings. They provided suggestions. They lifted me up when I needed it. They were just simply – there. Sometimes that is all is all you need.

I tell you all of this in hopes that my experience and my learnings will help you or someone you love on their health care journey. You don’t have to cancer for these lessons to apply. We all need to be reminded from time to time that bad things happen but we will make it through.

Kamala Harris shared this old adage in her concession speech the other day: