Because I’m seeing so much pink this week, I find myself thinking about all things related to FBC (f-bomb breast cancer). It’s amazing how a few (million) pink ribbons reactivate the memory of experiences (and f-bombs!).
One of the things that comes to mind (that you dear readers discuss with me frequently!) is:
What to say or WTF not to say to someone with FBC.
Here’s the thing: it’s hard to be a friend to someone who has FBC. It just is. I know. I really do. I can’t tell you the number of times people have asked me: What can I do? How should I be? What should I say?
So, I thought that for the next few days I’ll share some things that were said to me when I was sick that felt a little, well, cloudy… and offer a more Silver Lined way to respond.
I’d love your thoughts. What did you hear when you were sick and what would you like to have heard?
Hollye Harrington Jacobs, RN, MS, MSW
Hollye began writing as a way to discuss her journey with breast cancer. She believes that breast cancer happens within the ecosystem of family, friends, and community. Consequently, she decided to take the holistic approach and write about breast cancer with style, humor, and silver linings.
Hollye writes from the uniquely candid perspective of both her personal and professional experiences. She is a pediatric and adult palliative care nurse and social worker with graduate degrees in bioethics and child development.
Hollye has worked as an educator, clinician, trainer, and consultant at the City of Hope National Medical Center, the University of Chicago Children’s Hospital, the University of Chicago Pritzker School of Medicine, and Northwestern Memorial Hospital. She speaks nationally about bioethics, grief and bereavement, and a family-centered approach to facing life-threatening illnesses. You can follow her blog at The Silver Pen, email her at hollye@TheSilverPen, or follow her on Twitter @hollyejacobs.
Danadane says:
What a great way to look at this: clouds and silver linings. I must say I add the f-bomb to BC too; I’m currently doing rads and I’ve been silently cussing at the machine each time!
During chemo i found that I had the biggest problem with the simplest question of “How are you?” Do they want the truth or the easier white lie of ‘good.’ And, please stop telling me I look good when I know I look like I’ve been hit by a truck! I must have really looked bad before!!
I’m looking forward to following your blog…thanks!
thesilverpen says:
Thank you so much for your comment, Danadane. All my best wishes to you as you go through your treatment!
cheyenna says:
I had a big problem with people saying to me, after i told them i was fine, ” how long have you been in remission?” It amazes me how many people dont know what remission is… what really bothers me the most is about 98 % of women (including myself at the time of DX) i have talked to about bc,have no idea what chemo thearpy is for in early stage bc. I say “why do we do chemo? Whats is chemo for?” They reply ” to get rid of your breast cancer” i then say ” i only had cancer for two weeks, then Dr’s took it out, i dont have bc anymore, so why do i need chemo if i have no cancer in me?” Why did i do 16 treatments and why did my hair fall out?” They all say the same thing, “i dont know?” They have no idea! And when i explain what “distance reoccurrence is,they are floored, and shocked! I find it very sad 🙁
AEM47 says:
I’m still trying to figure out why people feel the need to ask ” did they get it all?” What exactly are they trying to figure out?
Jenny402 says:
I am more disappointed in people that say, “your chemo is over so you should be happy and fine now”. I actually had my mother say to me, “I dont want to hear about your cancer anymore, nobody feels bad for you, you are cancer free now”. As if my life will ever be normal again? Sadly my sister started an argument with me the day after my last chemo treatment and sent me a text yesterday that she hopes my cancer comes back and I drop dead. Nice, huh? Every hear of such a thing?
Baldwin says:
I had a double mastectomy 2 years ago, so here are some of the dos and don’ts I have learned.
1st, don’t make the lame offer, : if you need anything, call me. Yeah, like I am going to pick up the phone and ask you to bring me dinner or go to the store for me or come over and run my sweeper since I have have no use of my arms for a while.
Just fine something appropriate to do, and do it!
2nd, don’t say “everything will be okay”. Because you don’t know that it will be.
3rd, call, email and visit! Just listen to our concerns. We are scared and need a sounding board.
4th, don’t say you know what we are going through if you never have gone through it!
5th, don’t ask if it runs in our families or other questions like that insinuating that we may have done something to cause it.
6th, don’t think because the surgery or treatment is over that there is a switch that we turn on that we never forget all we went through. I went through 3 lumpectomies where I was told all was okay and everytime was called back to hear ” oops, we found more. Then, after finally being prepared for the big surgery and reconstruction and having the dye injected into my nipple, was told” oops, we forgot to order the expanders, so you can come back here in two weeks and we will do this all over again. ( they finally made things right). So, there is a lot of emotional pain involved.