HELLO FRIENDS!

The blog trilogy around “Building Your Own Health Care System” is coming to a close with today’s final post in the trilogy. I will be hosting a LIVE on Instagram Thursday, May 27, 2021, at 11:00 AM where I will be answering questions around Building Your Own Health Care Ecosystem. If you missed it, not to worry, it will be posted after on my Instagram IGTV under “The Tea with Jenn” Series.

Although the trilogy is coming to a close, with today’s post on “Becoming Your Own Health Care Advocate” I encourage you, if you haven’t already, to check out the other blog posts in the trilogy:

• April 14^th, 2021 post “It Takes a Village” talks about how I built my Health Care Team.
• May 9^th, 2021 post “Caregiver” talks about the importance of having a caregiver during your cancer journey.

These are important topics to think about during your cancer journey. But the reality is, it is important for ANY health care journey, not just cancer. We all need to be proactive when it comes to our health.

One of the most important tips I give to someone asking me my advice for their cancer journey is to Become Your Own Health Care Advocate. I truly believe being engaged in your health care is critical. The definition of being a Health Care Advocate will differ by individual, there is no right or wrong, it is whatever works for you. In this post, I will share what it means to me.

I recently attended a virtual session with one of my favourite groups Healing and Cancer. It was hosted by the group’s founder Dr. Rob Rutledge and the guest speaker was Dr. Bernie Siegel. It was around Bernie’s philosophy on being an Exceptional Cancer Patient. He writes about it in his book “Love, Medicine & Miracles.” A book I strongly recommend to someone going through a cancer journey as it contains so many insights but especially around what it takes to be exceptional.

“Exceptional patients manifest the will to live in its most potent form. They take charge of their lives even if they were never able to before, and they work hard to achieve health and peace of mind. They do not rely on doctors to take initiative but rather use them as members of a team, demanding the utmost in technique, resourcefulness, concern, and open-mindedness. If they’re not satisfied, they change doctors.”

      – Bernie Siegel “Love, Medicine & Miracles.”

Dr. Bernie’s philosophy’s around becoming an Extraordinary Cancer Patient really resonates with me and speaks to what I believe is being your own Health Care Advocate.

To help you on your journey to becoming a Health Care Advocate I have created a top 6 list:

1. If something feels wrong, it probably is.

My first cancer in 2015 was almost missed. If you know anything about cancer you know how important screening and early prevention is, so the fact mine almost slipped through the cracks is terrifying. How did it happen? I had the wrong members on my Health Care Team. My family Drs. at the time were not a fit for me and my needs. Yet, I didn’t fire them, at least not right away.

Thankfully, I went for my yearly physicals, the importance was drilled into me at a young age thanks to my Mom. This particular physical my PAP came back irregular. So that meant, according to the Ontario Health Guidelines, you have two PAPs 6 months apart. If they are normal, you are good to go until your next PAP 3 years later. Both those extra PAPs came back normal, so according to my Drs. I was “good to go” for another 3 years. But I didn’t feel good about it, in fact, I mentioned I had bleeding sometimes between periods, I was always tired (and classified as Anemic), I felt something was off. I was told I was fine, without much thought or further questioning. My Mom kept bugging me to see a specialist, but I am a people pleaser, I didn’t want to rock the boat.

Around this time I went to a new chiropractor who was very thorough in her physical before she treated me. I explained what had happened, how I was feeling, and she told me “Please call them every day until they refer you to a specialist.” I did. And the rest is history. I also want to say that chiropractor, Dr. Sarah from Integrated Health Connections is still a valuable member of my Health Care Team. I truly believe her, and my Mom helped to save my life.

PLEASE, if you have a “feeling” do what you need to do to get it checked out. It may turn out to be nothing, and if so, yippee! But if it is something, don’t you want to know?!

2. Bring someone with you to your appointments to act as support and as a scribe.

I talk a lot about this on the May 9^th, 2021 blog post Caregiver. When you are in appointments your anxiety can be high, that is normal. So having someone there to not only give you emotional support but also to take notes, is so helpful.

Right after an appointment we always review what happened, compare notes. My Mom always sends me her notes so I can compile them with mine.

It is so important.

3. Be prepared.

I always prep for my appointments. I review my previous notes and most importantly I WRITE DOWN QUESTIONS! I don’t trust myself to remember what I want to ask at the moment of the appointment.

I have a Health Care Journal in which I write notes and my questions for each appointment.

4. Stay informed.

How informed is up to you. I have a friend in my cancer community who loves to research. He is so very knowledgeable, and I love that about him. Although I have an #alwayslearning mindset too much knowledge is scary to me. So this is where you decided what works for you. There is no right or wrong. All I ask is that you don’t bury your head in the sand, as that will not help.

There are so many ways you can do this, books, webinars, groups. The list is endless. Here are a couple of places I look to for knowledge, information, and support on my cancer:

• Gilda’s Club Simcoe-Muskoka
• Canadian Cancer Society
• Healing and Cancer
• Bernie Siegel

The other thing I do, and this was scary for me, but I was inspired by the cancer community friend I told you about. GET YOUR MEDICAL FILES. I know, I know. I read them sometimes and it makes me SO nervous BUT it is important to have them. For yourself and also to share with your Health Care Team professionals so you are all on the same page.

5. Make sure your Health Care partners are on your team. If not, make a change.

I spoke about my first experience with cancer in 2015 and the need to change my family Drs. I did eventually and I am SO happy. Going through cancer for a second time and having an incredible family doctor who is there to listen and support me is everything.

It is scary making a change, but as Dr. Bernie Siegel says in the quote I shared above, if you aren’t satisfied, you make the change.

During my second cancer diagnosis at the start, I got to work with my original oncologist who is incredible. He has always made me feel safe, comfortable and we truly act as a team. Unfortunately, since this cancer required a different treatment path, I got a new Oncologist who had the tough task of giving me my new diagnosis.

Let me say, it is not easy being a doctor. It is something I could not do. I am grateful for those who take on the role and I know their intention is always coming from a good place. They have to deliver some horrible news some days. I appreciate that.

Not to go into detail but the delivery of my diagnosis was difficult. In fact, it was so horrible it has definitely given me what I have learned is Post Traumatic Stress. When I think about upcoming appointments or test results I get very anxious thinking I will get devasting news again. Sure I will always have anxiety always with appointments, but I truly would feel extra anxious l and felts discouraged when I thought I would have to work with this oncologist who didn’t seem to have any hope for my future. Doctors are not allowed to lie, nor do we want them to, but there is a way to deliver a message that can help cushion the blow. And oh my goodness there is ALWAYS hope. I am forever grateful for the nurse that day who said very clearly to me “If there isn’t hope you wouldn’t be getting treatments!” Her “matter of fact/positive” attitude helped me not pass out, which I kid you not I thought was about to happen.

So what did I do?

I made a team switch. At the urging of my Mom and again my WONDERFUL cancer community buddy, I reached out to one of my therapists (it was over the holidays, so my regular therapist was on vacation, but my group therapist was around!) and she immediately talked me through what needed to be done and helped me make it happen, with zero judgment only understanding. Again, both of my amazing therapists are still part of my Health Care Team and I am SO GRATEFUL for both of them.

My new oncologist is a better fit for me and my team. The previous one wasn’t, it is as simple as that.

6. Have hope.

I talk a lot about hope. If you read my Instagram post today you read how Dr. Bernie defines the difference between hope and a wish. To put it simply, hope is active. You have to work at it. My work ethic likes that definition. It makes hope feel real and attainable not fluffy. I don’t mind putting in the work. I like being accountable. I did not cause my cancer, I can’t control my cancer, but I can do what I can to make my journey better. Having hope is key to my cancer journey. Attitude is everything, my friends. I know the seriousness of my disease. I know one day I will die. We all will. I choose to be happy and hopeful for the rest of my life. If I am being honest, I have hope (and I believe) that I am going to live a long and happy life even with advanced cancer. How do you like them apples?! (If you have never seen Good Will Hunting, you need to!)

To wrap up the three-post trilogy on “Building Your Own Health Care Ecosystem”  I want to reiterate you don’t need to have a chronic illness to want to build a strong Health Care Ecosystem. In fact, the best time to start is BEFORE you have an illness. Do the work to becoming a Health Care Advocate by selecting a reliable Caregiver and building a strong Health Care Team.

Follow me on my social @JAYEMBarrie for my POSTS, REELS, and IGTV, or check out my website www.jayem.ca 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.  Please note: I am not an expert or professional in the field of cancer. I am simply someone who has gone through it and living with it, doing my best to offer you my experience and advice in hopes that it helps.