Last week, I heard the most absurd, disturbing, and almost almost comical (if it were not so outrageously ridiculous) story. The day before my Girlfriend (GF) was going in for her big, ginormous surgery, she got a call from her insurance company’s “Cancer Counselor” (CC). Here’s how it went:
CC: Hi, I’m so-and-so. I’m your Cancer Counselor.
GF: My what?
CC: Your Cancer Counselor. You have surgery tomorrow, right?
GF: Yes.
CC: Well, let’s talk about chemo because as soon as you recover from surgery you’re gonna need it. And you’ll probably have lots of side effects from chemo. If you have this side effect or that side effect then you’ll have to go to the ER.
GF: The What?
CC: The EMERGENCY ROOM. Do you have any other questions?
GF: HUH?
And it went on and on and on like this…
Coincidentally (or not) about 5 minutes after my girlfriend hung up with the looney-tunes (Non)Counselor, I happened to call simply ask what peaceful pre-surgical activity she was doing. When she told me the story, you can only imagine how…ummm…ballistic I went…after dropping quite a few f-bombs. Geesh!
So, instead of providing peaceful support, this (Non)Counselor spun my poor friend into a tizzy. Rather than thinking about harnessing her strength for the upcoming surgery, thanks to the egregious and inappropriate comments from the (Non)Counselor, my girlfriend (before ever having spoken with her doctor, btw) imagined herself in the ER with non-existent side-effects from chemotherapy that had not yet been prescribed. WTF? I mean, really.
The unfortunate, sad and quite infuriating (from my perspective) reality is that some people who work in health care just don’t get it.
The Silver Lining is that you can be empowered to S.T.O.P. a nutty, out-of-line conversation. Just because someone calls you doesn’t mean that you have to talk to them. When the conversation is going down the path of absurd rottenness, you have the power to stop it. Even when you’re in a conversation with a fast-talking physician, you can ask him or her to slow down. YOU.ARE.IN.CHARGE.
Especially when you are a cancer patient, please remember that there is no “Shoulding.” When facing a catastrophic, life-rocking diagnosis, the most important thing to do is to surround yourself by people who lift you up, hold your hand, and fuel you.
Now, I’m not suggesting that you become an ostrich and stick your head in the sand or hold your hands over your ears and say “LA-LA-LA-LA-LA” when it’s time to have important conversations about treatment and side effect management, etc. Though it would be nice to Dorothy your way back to Kansas, that’s just not realistic.
However, all challenging conversations can be supportive, encouraging and hopeful. Please know that when you intuitively feel awkward, stop a conversation…assess where it’s going and why, then redirect it.
If you feel especially polite (which I wouldn’t!), you could take a number and tell the person that someone will call them back at a more, ahem, appropriate time.
The most important thing to know is that you need to do anything and everything to care for yourself. Learning self-care is quite a power Silver Lining of FC (f-bomb cancer).
Have you ever been in a situation like this? If so, I’d love to hear how you handled it! Any recommendations?
Oh, my gosh, I am SO sorry your friend went through that. My Mom and I had a few of those conversations. Once when she was in isolation because her blood counts were dangerously low and she developed an infection, one "lab technician" came in to take blood, no gown, no gloves, no mask. When I (at first politely) asked her to please don protective gear as stated on the door, she stated "I have been doing this for 20-odd years, I know what to do." Her ears must still be ringing. She didn't get to lay a finger on my Mom. You run into ALL sorts of people when facing this type of situation, some are wonderful, emphatic and compassionate, others are complete amoebas (no disrespect to amoebas, but only word I could think of and keep this a publishable comment). As a patient, one really has to remember one is in control and has the right to speak, question and be heard/answered. Patients are at their most vulnerable, they need all the support, love and compassion they can get. Thank goodness you called right after, you really are an angel of a friend!
Dear E.B., Good for you to advocate for your Mom. Awesome. I worry about the people who are weak and especially vulnerable and who cannot advocate for themselves. The more we can encourage people to speak up for themselves, the better! Thank you for sharing.
My surgeon gave my name to someone that also had had BC and a lumpectomy. She called me, asked if I wanted to talk about the procedure scheduled for the next day, what to expect, etc. It was nice to talk with someone who had been there and it calmed my fears. She was supportive and comforting when I needed it. She offered her number to call her at any time. Of course my main emotional support came from my husband and grown daughter who were both great.
I also read one book by an author who described her BC experience, and I found it very enlightening and encouraging. It was Jamie Bernard's excellent book, "Breast Cancer, There and Back". She says, "BC is not a stigma or a death sentence, it is simply a diagnosis. The treatment after surgery is just a preventive measure. You do not have an illness, but are going through a protocol to prevent recurrence. You no longer have BC!"
What a wonderful story, Carolee. Thank you so much for sharing!
I agree with you 100% Hollye!!!! That was out of line!! Depending on the circumstances, if your friend (and anyone else subjected to these kinds of conversations) wanted to take it a step further, she or a loved one could calmly call the Non Counsellors boss and let them know how she felt. Enough calls and the problem may have to be addressed and others won't be subjected to that very same conversation. Don't be afraid they will assume you're just a fragile patient! You can make a difference, and if you or a loved one are up to it – it might be worth a try!
Thanks so much for your note, Kim! I think it's a great idea and wholeheartedly agree with you!
Fortunately I had a "breast care navigator "
would return my calls and answer my questions when
my wonderful supportive family didn't have the answers.
Unfortunately , I had side effects from chemotherapy that brought me to the ER .
We have come a long way but still need more support for ladies going through chemotherapy . There are so many supportive volunteers who can help
with the advice like what to do when your hair falls out beside just cry .
It takes a sensitive and caring professional to help you when you 're plagued with infections and nausea and all the physical side effects . Should we be depending on an ER? Your friend is fortunate to have you there with a kind heart and professional support .
System that is already overloaded ?
Thank you for your note, Hania. I'm so happy that you had a navigator. Absolutely wonderful. Now, the ER? Not so wonderful. Thank you for sharing your story!
Ok here is a (noncounselor) stupid comment that someone made to me two weeks after my double mastectomy…"I've always wanted a lift and an enhancement"…OMG WTF?? I genuinely believe that people mean well but wow that is a harsh statement to make to someone who has just been hung over the edge of a cliff. To add insult to injury my insurance refused to pay for my pure graft (liposuction) and implants…yes I was left with a bill of $14k…the ignorance that I was faced with when I called to attempt to get them to pay was unreal. Better to not rehash it or my heart will certainly begin to race!
Thanks for your note and sharing, Regan. I really appreciate it and feel my heart racing for you. Geesh. The nerve! Well, I'm just hopeful that other people will be able to learn from our experiences. That would be a wonderful Silver Lining! Thanks, again!