When I diagnosed with Stage 4 Liposarcoma, my world literally turned upside down. My family completely freaked out. I don’t think a lot of people talk about their experiences as the person who has cancer. But I will if you ask. It isn’t easy. But the outcome on the other side can be better stronger relationships and a lot more respect for each other.
I think cancer is harder on the family than on the person hosting it. And their difficulties handling it make them want to lean on you, when all you are trying to do is survive and understand. My personal daily measure of “support” (I called it my bucket) got really empty at times.
When you are first diagnosed, everyone seems to know what you “should do” and they do not listen to what you want to do. It’s like you are either already dead or suddenly incapable of any thought or action. Let me tell you, that just because you have invading cells puddled up and hiding in your body, you are NOT dead yet. You are NOT incapable, You are YOU! You need to stand up and have a voice and take care of yourself EVEN IF you family disagrees with your choices, and ESPECIALLY IF they won’t listen to you. It’s your body, you are hosting the invader and you can feel it’s effect. They can’t. This is one time in your life when it really is ALL ABOUT YOU.
Some of the most horrible things to deal with for me were:
- Some family members treated me like I was already dead
- Some family members would speak for me like I wasn’t even in the room, even though the conversation didn’t include them
- Some family members were so wrapped up in the idea of creating memories with me for when I died, that they didn’t consider my wishes or limitations
- Some family members who didn’t do the research on my disease thought they were experts and knew better than myself and my doctors about how to cure me
- Finding out who my real friends were
- Finding out that non glamorous cancers do not get much research funding, while others glamour types are over funded
Some of the most awesome things to happen to me
- Building a stronger relationship with my family
- Gaining respect from my family
- Finding out who my real friends were
- Meeting some of the most awesome medical personal in the world
- Being able to use my knowledge learned during 14 years of undergrad work in my multiple majors (I did a lot of pre-med biology classes)
- Cancer got me out of my shell and now watch out world!
- Life is short, you don’t know what might happen tomorrow, so LIVE it, LIVE ALL OF IT!
I once heard a fabulous blues song in smokey little blues bar owned by a dentist in Oklahoma city. I learned that it was by John Coltrane and the chorus goes like this.
Sing hard, laugh hard
Give love a try
Work hard, play hard
I’ll sleep when I die
Shortly after my diagnosis, that chorus came across my view again. It’s been my motto ever since. Through cancer treatment and ever since, they have been some of the words I live by.
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