(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:
- NOT ALL CHEMO MAKES YOU BALD!
- 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.
- 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.
- 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.
- 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.
- 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.
- I’ve learned to say “no” to a LOT of things I used to do.
- I’ve become very choosy about how I spend my energy.
- 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.
- 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.