“Safe,” My Ass

Posted on: June 27th, 2018 by
8

In my last post I discussed my possible lung damage from radiation therapy for breast cancer. I am still hoping for the courage to accept this possibility. Someday I will accept that I made the best medical decision I could have, given the misinformation I was given about radiation’s so-called “safety.”

Today is not that day.

Frankly, I’m having difficulty with acceptance. I am angry with my then-radiation oncologist right now. She and her staff painted a golden picture of radiation and blamed my side effects on chemotherapy, which I received simultaneously. Did medical personnel know how radiation could damage the lungs and even the heart? My radiation oncologist had to know something: she joyously told me that because the cancer was in my right breast, my heart would be safe from the damage radiation can cause.

I don’t believe the bullshit I was told anymore. I’m exceedingly worried about my lungs right now, and I’m also nervous about any possible heart damage. What if I do have COPD? My aunt died of complications from this condition, and I fear I will eventually follow suit.

I’m scared.

A diagnosis of cancer years ago left me reeling out of control, and I’ve since struggled to gain some control of my life. I have spent my entire pre- and post-cancer life taking care of my health the best way I know how.

I am trying not to allow my bitterness to house itself in my psyche. Lately, I’ve been wanting to take up boxing and belt a punching bag. Yet, I’ve recently decided that anger is not the way for me. Anger would eat me up alive.

So, instead, I went miniature golfing. The paths to each hole were winding and hilly. I had some difficulty breathing as I navigated the steps and inclines up to the next hole. The pneumonia is almost gone, and I managed. A huge victory.

Miniature Golf

Miniature golf is peaceful because it makes you slow down. You often have to wait your turn while the people before you play a certain hole. Then there’s patience. You have to be patient as your golf ball continuously misses the hole. (I’m not so good at this game.) Nevertheless, it is a relaxing environment that forces one to walk slowly and take in the beautiful surroundings. The particular course I was on had an abundance of waterfalls and ponds. At times I crossed small bridges with the water trickling below me.

That made me feel better.

But I’m still pissed off at my radiation oncology team.

Have you ever been misled by medical professionals?


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8 Responses to “Safe,” My Ass

  1. Linda Cohen had this to say about that:

    Beth, I can’t imagine how concerned you must be. Just remember you received the best standard of care based on the best info at that time. Many people still opt for the radiation route today. It’s still a course of treatment. Regardless, it’s good you distracted yourself. Now go easy on yourself as well. Feel better, Linda

    • Beth L. Gainer had this to say about that:

      Hi Linda,

      Thank you for your supportive comment. You are right: radiation was the best standard of care at the time — and it still is in many cases — and I made the best decision I could. I just wish medical people were more forthright with me.

      I do need to learn how to be easier on myself. I get down on myself if I feel I’ve made the wrong decisions. At the time of diagnosis, I made the decisions I did to save my life. I can’t keep on blaming myself. I guess I’m still working things out. And, one never knows, maybe I don’t have COPD after all. I’ve got to get that checked out.

  2. Caroline Ronten had this to say about that:

    Never waste your time regretting something that cannot be undone. You were given advice for treatment that was standard at the time. If you let your regrets upset you, it will unnecessarily distract you from living your life. Hugs.

    • Beth L. Gainer had this to say about that:

      Caroline,

      That is the best advice I’ve had. Thank you. You are right. What is done is done, and there’s no going back. Only going forward. I want to live a quality life and focusing on the negative aspects of treatment really isn’t helping.

      I appreciate your thoughtful comment!

  3. Marie Ennis-O'Connor (@JBBC) had this to say about that:

    Yes! I wasn’t told that the chemo regimen I was given would affect my fertility – that still breaks my heart. And I had all my lymph nodes removed when I should have had the option of a sentinel node biopsy – now i deal with lymphodema when I didn’t need to. So yes, I totally get your anger Beth and I too am grateful to Caroline for her sage advice.

    • Beth L. Gainer had this to say about that:

      Marie,

      I’m so very sorry that you weren’t told about what chemo could do to your fertility. That happened to me as well, so I totally get it.

      It’s terrible that the sentinel node biopsy option wasn’t presented to you. It is difficult enough to deal with a cancer diagnosis and treatment, only to have options and information withheld from us and us reaping the consequences.

      I’m sorry for all you have gone through, just because you weren’t told useful information.

      I’m sending virtual hugs.

  4. Kathi had this to say about that:

    Beth, you probably know how I feel about this. I did a lot of digging after rads, and there’s plenty of research out there about short and longterm lung damage. I ended up with a bunch of respiratory-related issues in my first year after radiation, and a CT scan showed a bit of scarring from it. And noone warned me. Grrr.

    • Beth L. Gainer had this to say about that:

      Kathi,

      I’m so sorry about how radiation damaged you. It’s amazing how much research there is about lung damage from radiation treatment and, yet, medical professionals don’t always warn us.

      I totally get your anger. I’ve been angry lately, too.

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