When you are diagnosed with cancer, you'll be surprised at all the things people will say to you. Some of those around you immediately become doctors and cancer specialist. Some who you thought were intelligent, will immediately show how insensitive and unintelligent they can be. While others will become totally oblivious.
One of my first experiences with the oblivious and insensitive was when Monty and I made a stop at our local chapter of the American Cancer Society (ACS). My mom told me to check with them, since she had been able to go to a class called "Look Good, Feel Better" through their programs. She went and was shown make-up techniques and given make-up, a few caps and had a chance to receive a free wig.
We entered the building and were greeted at the reception desk by a smiling volunteer. So far, so good. Right? The volunteer asked how she could help us. With Monty next to me, I explained I had recently (just the week before) been diagnosed with Ovarian Cancer. We were looking for information on the cancer and any groups, as well as information on the "Look Good, Feel Better" class.
The volunteer's response: "I don't know about that class. I know we used to have them, but I don't really think we do that anymore." She then moved some things on the desk and sat down, looked at us and said, "Oh, Ovarian Cancer? My mom had that when she was 80. She died from it you know." She handed me a pamphlet called Eating the Rainbow to Reduce Your Risk of Cancer. Yep! Sad but true. We haven't done much of anything with ACS since that day.
Obviously I didn't get to that class!
Of course, I like everyone else diagnosed with cancer, had and still have my "experts without a MD":
- A dear friend, who unfortnately a few years after my diagnosis was diagnosed with breast cancer and chose to fight her own way and is now in heaven - "After all those things we talked about, and I know God put on your heart about your family and having children, I just don't think the surgery and chemo is the way to go. There are so many natural cures for cancer."
- A well-meaning Facebook Friend - "You know, I've heard using __________ and eating kale can help with killing cancer."
- Several people giving their opinions to try keeping me healthy - "You know chemo is poison. It's worse than cancer!" (Thanks, didn't know that! Of course it's poison, it kills cells in your body! DUH!)
Yep. I love all my friends dearly. Sometimes people just don't know what to say when confronted by those in their life who have a potentionally terminal illness. However, I personally feel if you don't know what to say or feel uncomfortable - not my problem. I'm having enough of my own issues dealing with this disease and fight, I don't have time to be nice and polite to your stupid!!
Of course then there are those people who are totally oblivious to what's infront of them. I had several people at work who were just soooo completely oblivious it was painful!!
- I had just gotten back to work for my 9 days after my second or third treatment, it was well known at work that I had cancer. (I worked in an office of 25 employees and was bald. It was too hot going through menopause and being summer to wear hats or my wig.) I was heating my lunch in the breakroom. One of our newer salespeople came in, looked at me then at the microwave. . . .
Salesperson: "Is that you're lunch in there?"
Me: "Yep." (just waiting for my food so I could go back to my desk, take off my mask and eat)
Salesperson, straightface, looking right at me, deadpan: "You know microwaving food in plastic can give you cancer. Right?"
Me, raised eyebrow, rubbing a hand on my BALD head: "Hum, REALLY?!?!?" (insert sarcasm) "Been there, done that, got the t-shirt and haircut."
Before it all completely fell out, but you get the idea.
- Another day at work when the air conditioning wasn't working right and my little desk fan was not doing its job either, I was talking to a friend/co-worker who was always cold. Another older female co-worker in the cubicle next to mine was listening in and just had to put in her two cents.
Cold co-worker: "I just can't believe you're always so hot!"
Me: "Well, that's what menopause will do for you. Here," I stuck my arms out for her. "warm up on my arm, the perpetual heater." She put her icy hands on my arm and we laughed.
Nosey Co-worker: "What are you talking about? You're too young for menopause."
Both of us turn and look at her.
Me: "Um . . . remember those surgeries I had in April and May? When I was out for all those weeks? When they remove your ovaries they take out your thermostats and force you into menopause. So. . . . I guess I'm old enough!"
However, the worst and toughest are those who have made it through college and are medical professionals, but as a cancer survivor, I still have to give them anatomy lessons. These are the most painful and unintenionally hurtful things I have ever had said to me. (And I grew up with 4 brothers!) Things not just myself, but many other of my Teal Survivor Sisters in the same poisiton feel we shouldn't have to tell or teach medical professionals such as: x-ray technicians, mammogram technicians, CNAs, nurses, doctors and anyone checking us in for medical appointments of any kind. Maybe if you're a survivor like me, you have guessed what's coming next, if not hang on and no judging the survivor!!
At every physical with your primary care physician, if you are female, you get asked a standard list of questions every year. I personally think the medical professionals who have to ask these questions hundreds of times a week get stuck in a progression of asking and not take into consideration the patient's chart.
One of the first questions is - when was your last period? This one makes me want to scream. My chart, which you have on the OPEN computer infront of you and I can even see what it says, states right at the top: Primay Diagnoses - #1 Ovarian Cancer. The next box down has a list of all my surgeries which include: Complete Hysterectomy, Salipingectomy, Oophorectomy and Omentectomy - 2013. When I point this out, I get a blank stare and "When was your last menstrual cycle?" Sometimes I'm sure when I dramatically roll my eyes they're gonna stay that way, especially when I sarcastically say "March 2013" After this information I am usually looked at like I am an alien and need to repeat the whole 15 minute rundown of what is on my chart RIGHT INFRONT OF THEM!! I have even gotten a response after that of "Is there any way you could be pregnant today?" I just shake my head in disbelief and usually give no answer!
However, the most painful is every mammogram, x-ray, CT scan or PET scan when the question I most dread comes up. "Could you be pregnant today?" I usually get an eyeroll or strange look from the teck when I ask if they have even read my chart. I mean once again, it's right there on the top and I figure they had to have taken anatomy & physiology in college.
I can honestly say, the worst day of my life was the day I had my first mammogram after I finished chemo. It was only 5 months after I had finished treatment and 10 months after my diagnosis. My emotions and grief were very new and raw. I was barely through my first year of dealing with being in menopause, was getting over a lot of the after effects of chemo and hadn't even started to face the depression and grief I had weighing on me. I was NOT prepared for this question at all. '
I was in my gown & robe, nake from the waist up. The tech & I were in the mammogram room. She shoved a clipboard at me with a stack of papers on it and said, "When was your last menstrual cycle? Could you be pregnant today?"
I started to tear up and just looked at her dumbfounded. I tried to talk and was too choked up. I swallowed a few times and then the anger started. "NO! There is NO chance in hell I could be pregnant. I have Ovarian Cancer and just finished chemo! I had every part that it takes to make a baby taken out almost a year ago! You would know this if you took the time to read my chart you have pulled up infront of you!!! Even I can see from here under my name it says OVARIAN CANCER HYSTERECTOMY! THAT USUALLY INDICATES NO PARTS TO MAKE A BABY!!!!" I sat there with hot, angry tears running down my cheeks.
She just looked at m:e, handed me a pen and asked, "So is there a chance you could be pregnant? Just read and sign this form."
"WHAT??" I looked at her in disbelief. "I demand a new tech to do my mammogram today! If you truly do not know your human anatomy enough to know that without reproductive parts I have NO CHANCE of being pregnant, I have ZERO trust in you to know where my boobs are much less know how to run this machine! Please go get me a new tech, NOW!!"
She stared at me a few more moments, then went to get her supervisor. I could hear them talking in the hall about "the patient from hell" and "what was all the yelling about". Worst mammogram and day of my life!! That day I decided I needed a shirt to wear to all future mammograms and scan appointments that said "Last Period - 3/2013 No Parts No Pregnant" (In all honesty I still need to get that shirt made.)
Even though I have had to repeat the "I don't have the parts os I could NOT possibly be pregnant" speech to almost every tech since, I have come to realize, after 6 years, this is part of my educating others about Ovarian Cancer. I always have symptom cards in my purse or pocket to hand out to the techs, nurses and even doctors who don't understand what those big, long words on my chart mean for my treatment. And . . . this past October when I had the very first tech ever who knew what Ovarian Cancer was and what it meant to have had a hysterectomy, it was the BEST mammogram ever!!
I honestly hope people don't try to be mean or stupid. I really hope they are trying with the best of intentions, to hand their own discomfort with cancer and the possibility of looking death in the face. I also feel, that as the patient and survivor I don't always have to care about the other person's feelings or if they are going to be offended. Your issues are not my concern when I'm fighting for my life or dealing with issues you have no idea about. Yes we all have issues, but when you are a friend, co-worker or medical professional you need to sometimes put your issues down and focus on the person you are talking to, who is going through an obviously rough, trying time. Save your offense and "you're being rude to me" attitude for someone else.
Close your mouth if you can't figure out what to say. Why? Because sometimes you run into someone like me.
T'MOC & AdvoKate
