survivors have a responsibility to pay it forward

I am 7 years and 1 month breast cancer free. I would not have gotten here without the occasional support of other survivors before me.This is, after all, a journey like no other. And not a journey I would wish on anyone, but it’s part of life…sadly.

I don’t pretend to be an expert on this disease, and everyone’s cancer is different so I can only say what worked for me. Part of what worked for me is this blog, which is like a living online journal of a sort and talking about breast cancer openly. I think journaling helps. You don’t have to blog, but try to journal. The exercise of getting the myriad of emotions out is so helpful. Think of it as releasing toxicity.

People almost visibly wince when you mention breast cancer. Ummm, yeah, don’t wince on my behalf because (a) you didn’t go though it, I did and (b) I am alive.If people are uncomfortable when you say you have or had breast cancer, let that be ON THEM. Not you. You have no damn reason to be uncomfortable because they are uncomfortable.

I believe being open with your friends and family is important because they are your support network. That doesn’t mean the support network gets to run your disease, however. They are there to support you, not control you. If they can’t be supportive, let them go for a while. Your energy needs to be on you.

Be positive.

I am not always positive, I don’t think it’s humanly possible 24/7, but I try. But deciding to be positive through surgery and treatment made a difference.

Don’t be afraid to ask questions of your care team. It’s their job to answer every question you might have. You are paying them to save your life, after all.

Take advantage of “breast benefits” – nurse navigators, nutritional and psychological counseling, and so on.

Be prepared to take on health insurance companies. Again, you are paying them for coverage and you don’t have to necessarily take what they say lying down.I know, I know this all sounds exhausting. But it’s not so much that as simply being proactive, and being your own best advocate.

Even if you think you can go to appointments and treatments by yourself, don’t. Trust me, extra ears are so helpful. And the company helps. Among the hardest things for me going through treatment was watching other women doing it alone. Don’t be alone through this.

Post cancer life is your new reality. I have been pretty lucky, save some side effects from radiation treatment and Tamoxifen.

The Tamoxifen side effects are hot flashes (which 7 years in to a 10 year drug plan have regulated a bit and aren’t as bad as they were the first couple of years) and early cataracts. Now I have had family members on both sides of my family with cataracts, so chances are mine would have happened anyway, but Tamoxifen has accelerated them so I am growing them in my 50s. When they are “ripe” I will have them removed. I also have intermittent joint pain. I do NOT like the joint pain, but exercise does help.

Radiation. Well while undergoing radiation my hair did thin out a little and it changed texture for a couple of years. It also made me bone weary towards the end, so remember even Wonder Woman takes naps. Radiation therapy can damage your thyroid. That is something new for me, hypothyroidism. But in fairness, genetically it may come naturally because apparently my mother has been off and on synthetic thyroid meds for decades. And my sister lives with Hasimoto’s. I was recently diagnosed with hypothyroidism.

I am a bad cancer survivor sometimes and like to avoid needles and blood work. But a nice but firm nurse practitioner who works with my primary care physician made me sit still for a full physical. Now I understand why I kept getting so tired, even with proper amounts of sleep. We will see how I do on thyroid meds and I have more blood work in my future.

Look, do I like the fact that even 7 years post breast cancer I have way too many doctors appointments? Oh hell, no. But, the bottom line is I chose life and we are a long time dead.

I still have the newly diagnosed and family members of newly diagnosed reach out to me. Some folks I know, some I don’t know. But I want to pay it forward so even if it is just me lending an ear I try to do it.

Recently someone reached out who has a loved one with a stage 4 diagnosis. That is hard for me because I was stage 2 and very, very lucky. Metastatic cancer is tough, and their loved one had the initial reaction to refuse treatment. I hope their loved one changes their mind, but if they don’t, I hope everyone respects her decision. Breast cancer is a real my body/ myself moment. I chose to fight and I chose to have the recommended treatment. But not every human being is going to chose the same path as horribly cruel as that sounds. All we can really do is love one and other at the end of the day.

Another recent development is once again learning about women who have never had mammograms. Sorry, not sorry, THAT terrifies me. Is the old boob squish fun? No, but again, you’re a long time dead, so take advantage of every damn mammogram and every bit of genetic testing available.

If you are a survivor, don’t hide. Shine your light. Pay it forward.

Again, I don’t pretend to be perfect. And as survivors are we suddenly blessed with advance medical degrees? No. But we’ve been there. So pay it forward. We’re all only human, after all.

About carla

Writer, blogger, photographer, breast cancer survivor. I write about whatever strikes my fancy as I meander through life.
This entry was posted in breast cancer and tagged , , , . Bookmark the permalink.

One Response to survivors have a responsibility to pay it forward

  1. Alene Nitzky says:

    Carla thank you for sharing your experience and wisdom and continuing to share as it evolves. People need these accounts from lived experience.
    Much love, Alene

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