By the time I completed biochemotherapy treatments for Stage IIIc melanoma, I had the unmistakable look of the stereotypical cancer patient. I’d lost enough weight to look skeletal, had no eyebrows or eyelashes and only a little fuzz left on my head, and my skin was red and crusty. The melanoma clinic oncologist who saw me for a checkup ten days or so after the last round even told me “you certainly don’t look as good as you say you feel”, which, although true, nevertheless irked me more than a bit.
But oftentimes Stage III and IV melanoma patients undergoing immunotherapy don’t look “sick” like most people think cancer patients are supposed to look. They may feel lousy and even be in a lot of pain, but to casual acquaintances and co-workers they look “just fine”. So the relative invisibility of advanced melanoma and its treatment seems to sometimes engender a certain degree of denial that a Stage III or IV melanoma patient has a “real” life-threatening cancer.
I surely don’t want any of my melahomies to look like I did during treatment. But maybe we’d strike a blow for melanoma awareness if we all made a pact to shave our heads (or hide our hair under fake bald caps) and wear jet-black stocking caps or head scarves while undergoing immunotherapy treatments like interferon or ipi? A few black patches in the sea of pink at the infusion center couldn’t hurt the cause now, could it?
I’ll sign off with a song to those who still think our “invisible cancer” ain’t the real deal and say insipid things like “thank heavens it’s just skin cancer”, to the tune of U2’s “Invisible”…
It's like our gloom’s just hid in cloak
I didn't even want the heart you broke
It's yours to keep
You just might need one
I finally found my real bane
I won't be free when you see me again
No, my mole C’s my stalker one
I'm more than you know
I'm more than you see here
More than you let me be
I'm more than you know
A body with loud mole
You don't see me but you will
I am not invisible
That's right
I'll be in the invisible world
I don't dream, not as such
I don't even think about mel that much
Unless I start to think at all
All those dosin’ days
And your frozen gaze
They melt away your face like snow
I'm more than you know
I'm more than you see here
I'm more than you let me be
I'm more than you know
A body with loud mole
You don't see me but you will
I am not invisible
I am here
There is no them
There is no them
There's only us
There's only us
There is no them
There is no them
There's only us
There's only us
There is no them
There is no them
There's only you
And there's only me
There is no them
Tutu Brothers
my partner in crime @HotelMelanoma as we work to #finishcancer a little laughter in a ALL to serious world of cancer pic.twitter.com/OQ0S3rPCYS
— Mark Williams (@melaphukanoma) September 15, 2016
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I love everything about this post. I am currently undergoing ipi treatments and while I'm feeling really good I do feel like I'm almost made to feel guilty for that. Like it must not be a "real" treatment for a "real" cancer if you arent bald and 90lbs. Thanks for validating what I was starting to think were just my own ridiculous musings :)
ReplyDelete~Kim over at www.morelikecantcer.wordpress.com
I love everything about this post. I am currently undergoing ipi treatments and while I'm feeling really good I do feel like I'm almost made to feel guilty for that. Like it must not be a "real" treatment for a "real" cancer if you arent bald and 90lbs. Thanks for validating what I was starting to think were just my own ridiculous musings :)
ReplyDelete~Kim over at www.morelikecantcer.wordpress.com
I was fighting against a cancer stage 4.I think it is very important that family support to win, because i was very weak;really helped me participate in one group of victims of cancer, so my mood improved, also helped me a lot a medical adviser in advisercancer-diseases.com (they are doctors),this is important .I recomended not surrender, because sometimes the first treatment does not work as me, and sometimes change doctors it is necessary.Read positive thinking books gave me more energy.During my cancer,i changed my diet,now i eat vegetarian organic food(now i not eat meat).I think is a set of things that help me.
ReplyDeleteXoxo
Linda