What I need you to HEAR

(Warning: slight rant ahead)
Yes I’ve been doing chemo for stage 4 breast cancer for over 5 years now. This latest treatment (the 7th type of chemo I’ve been on) took my hair. Here’s my top 10 list of things I wish you would hear:

  1. NOT ALL CHEMO MAKES YOU BALD!
  2. When you are a stage 4 patient, treatment ends when you run out of treatment options or your body can no longer tolerate any chemo.
  3. When you are a stage 4 patient, there is no way to know how long a particular treatment will work. I’ve gotten 2 1/2 years from one, and 3 months from another.
  4. When you are a stage 4 patient we aren’t counting down to “the last treatment”, we are counting UP to see how long this one works before we have to change to another.
  5. Yes, I’m still fairly active. You see me when I am up and moving. In order to be up and moving, I have to keep a rest schedule. I rest at least two days a week, more as needed.
  6. Resting means I’m in the house. Probably stretched out on the couch, or propped up in bed. I like to read, color and watch TV during my rest time. I may also nap.
  7. I’ve learned to say “no” to a LOT of things I used to do.
  8. I’ve become very choosy about how I spend my energy.
  9. I rarely hug people – I’m very sensitive to perfumes, and being in continual treatment, I don’t want to be exposed to anyone’s “it’s just a cold”. A cold for you may overwhelm my body and put me in the hospital.
  10. Yes, I work to maintain a positive attitude. Remember: life is comprised of ups and downs, and being able to express all emotions helps maintain mental health. I even wrote a post on positivity.

I had a conversation with someone I volunteer with a couple weeks ago. Understand that as long as he’s known me, I’ve been in treatment for Metastatic Breast Cancer. This last treatment I started 3 months ago has caused hair loss. Here’s our conversation:
Him: “Oh are you in treatment again?”
Me: “I’ve been in treatment the past 5 years, this last one just took my hair.”
Him: “Oh I know, but how much longer are you on this treatment?”
Me: “Until it stops working and I have to change to another.”
Him: “Yes, but how many more of this one do you have?”
Me: “I really don’t know. I’ve had one that lasted 3 months and one that lasted 2 1/2 years.”
Him: “Your doctor isn’t telling you?” (add skeptical voice tone)
Me: “We really don’t know!” (At this point I walked away)

Yes this is real! And happens many more times than I want to count. I’m almost to the point of typing up 1-5 above and keeping it in my pocket just to hand out to some people. Seriously.

I’m not quite sure why these things are so difficult to understand. I just wish they weren’t.

 

thanks to freevector.com for today’s image.

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2 thoughts on “What I need you to HEAR

  1. People are very ignorant most of the time unless they themselves or someone close to them has gone through it. A lot of people don’t even know what stage IV cancer really means, in my experience. Keep up the fight and I hope you get another couple of years out of this chemo!

    Liked by 1 person

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