I Didn't Know What to Say

I often see articles written about supporting friends through mastectomies, and one of the most covered topics is "What Do I Say?"  I never understood this until now.  I had friends and acquaintances I thought I'd hear from, or hoped I hear from, but never did throughout my surgery and recovery.  I get it, kinda.  It's uncomfortable.   You don't want say anything offensive, you don't want to trivialize it or you just plain don't know what to say.  It's especially tough for guys.  Its not easy talking about breasts, or losing them, with your guy friends, although some really came through and I love them for it.   I've been in that uncomfortable situation of not knowing what to say.  I didn't know what to say to my own mother.  I was young.  We didn't talk about boobs.  Perhaps that's why I'm so overly open with my own children...and the world, talking about breasts.  I don't want people to feel awkward.  I'm open with all of you because I want to help bridge the gap.  In speaking to a friend of mine this morning, she said something to me that hit the nail on the head...

I can imagine it can be very isolating, others can sympathize but not really understand what you are going through.

Some things can hurt when said, and we know you don't mean harm by saying them, because after all, you're our friends, but they might.  I think people say these things because they are trying to lighten up the situation, they want to connect somehow, they honestly don't know what to do or say, or they're nervous.  So, they say them.  Now, that being said, I talk differently to my very close friends than I do my acquaintances, so I give them a little more liberty to be candid with me.   They talk openly about the new "girls" and I know they mean it with all sincerity and love.   However, these are things I repeatedly found in blog after blog of women going through mastectomies that hurt them.  These women ask that people don't say:

• things like commenting on a great boob job as a result of the surgery, or saying they can totally relate because they've had a boob job.  Don't say these things, at least not first.  You might have a close friend who is totally OK with this (I have close friends who were able to do this), but if you're not that close, let HER bring it up or say it first.  Not you.  Let her ask you about your boob job, implants or crack the first comment about her new breasts. 
• things like "don't worry."  We're worried, we've been worrying since we found out we were BRCA+ or since we made the decision to have surgery due to cancer.  Of course we're going to worry.  Its uncharted territory for us, even though MANY woman have gone through it before us and MANY women will go through it after us.  We only know ourselves and our own journey. So yes, we're going to worry.
• things like "you'll be fine."  We know we'll recover from the surgery, eventually, but it's a long journey of mental recovery, not just physical.  Yes, we will get through it, but "you'll be fine" kinda takes the whole journey away from us. 
• things like "can I see them?" or "can I touch them?"  Trust me, when we're ready, if we're ever ready, to share our new breasts with you, we'll offer it up first.  At this point, for me, it becomes an educational tool, but one that I get to share on my own terms.  You'll know who you are.
• things like "its over now, you can move on," or "why are you still upset?"  Its a journey.  Mentally and physically.  We have good days and we have bad days.  We have a constant reminder in the mirror every time we shower, get dressed and try to make a bra fit.  We might have to have revision surgeries down the road, shopping for clothes changes and our breasts are still settling for the first year.  So, no, its not over.  I'm four weeks out and people assume I'm healed and back to normal.  Nope, it takes time.

By Paul (Flickr: Happy Valentines Day) [CC BY 2.0
(http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons

So here's the thing.  There's no right thing to say that will fit every individual.  There's no magical phrase that is going to take away all the fears of a person going through this.  You can't change it and you can't take it away.  But, there are things you can ask or say that will show us you're by our side.  You know your friend best.  Here are some common things I found among blogs.  Things like:

• ask why we're having a particular type of surgery vs. another.  There are so many options these days, we want to help others understand.  We want to educate.  We want to hopefully save someone else's life, while feeling like a woman again.
• tell us how you can help us during the recovery.  We don't always know how to ask for help, and many of us won't.  There's too many other things on our minds that we're taking care of.  If you can't talk about it or are uncomfortable, send a "I'm thinking of you" card or even just flowers with no note at all.  We'll get it.  Tell our family which day you'll bring dinner or tend the kids.  Give a day off to the caregiver.  You be the decision maker.   We know that these gestures come from the heart when you don't know what else to do or say.
• don't feel like you have to have answers or a comeback to everything we say.  Let us just open up and spill it all out if it does happen.  When my daughter found me sobbing one night, she simply wrapped her arms around me and said, "I hope you feel better soon."  That was perfect.  She didn't try to fix me, she didn't tell me to stop crying, and she didn't tell me it was going to be OK.  She just let me be.  Acknowledge our emotions, don't try to divert them or brush them off.
• ask how you can help with or join us in our back to exercise routine.  When you've had a mastectomy, you have to treat any exercise as if its the first time all over again.  We have to go slowly, letting our muscles stretch, work on expanding our range of motion and deal with the pain of scar tissue.  Many go through physical therapy.  This is something many friends don't know about recovery.  

I'm blessed to have a husband who knew exactly what to do for me.  Not only did he take care of me every step of the way, he made an inspirational video for me to watch the night before my surgery.  What I LOVED the most was that it was friends and acquaintances sharing stories of my strengths, what they liked about me, simply being cheerleaders, telling me they were thinking of me and some even shared some laughter (knowing our relationship was tight enough).  No advice and no one trying to fix me.  I love this video.  It was perfect.

In the end, don't worry about saying the wrong thing, just make sure to let them know you are there for them and thinking of them.  Let them know in some way that you are a part of their support network as they go through all of this.  Like I said, you know your relationship best.  BFFs sometimes have a little more leeway with comments than acquaintances so, but we want to hear from all of you.  We love you.

A Husband's Story-The Supporter

I wrote about the very beginning, finding out Heather was BRCA1+ and supporting her desire for surgery.  I'm fast-forwarding to the end, because that's a major key in planning the surgery.  You, as the supporter, will need to know what to expect in your role, and I want to give it to you while fresh in my mind.  Essentially I was Heather’s 24/7 on-call nurse. Here’s what I did to help out:

While in the hospital:

• Help her feel comfortable by doing small things like adjusting pillows under her arms and remind her to press the meds button.
• Feed her ice chips, or water, or anything she wanted to eat.
• Communicate with anybody who needed to speak to her.
• Take her for walks. (Hopefully that didn’t sound like Heather is my canine friend.) We took little 5 minutes strolls to get her up and moving, 2-3 times a day. 
• Remind her to use the IS (incentive spirometer) device. This is a tool to encourage healthy breathing and keep fluid out of her lungs, which is a risk after surgery. 
• More than anything, just BE there. The nurses could have done the things I mentioned above, although not with the same frequency and/or attention, but the main reason I didn’t leave during the 54 hours she was in the hospital is because I never wanted her to feel alone. I did take a few “breaks” by going to the cafeteria and sat there to eat. 

After the hospital:

• Again, comfort was my main goal. (Helping her adjust in bed, prop her up with pillows, etc.)
• Without the hospital nurses, I was also now the one delivering medications, which also meant setting alarms for crazy hours to make sure she never got to the point where we were “too late” and playing catch up on pain relief. 
• Drains. I was on drain duty for 9 days after we left the hospital. The drains didn’t gross me out, but it might make some queasy. The fluid wasn’t bad, but I do admit that the few solids that came through the drain tubes weirded me out a bit. But of course I never let HER know that.
• Showering. Instructions were to shower daily. I’m lucky that Heather and I are comfortable with one another. I can see how this whole process could be humiliating to the person receiving the help. I don’t know if she felt that way, and she certainly shouldn’t, but it’s that whole idea of not being able to take care of yourself and being dependent upon others to do very personal things. 

Support for the supporter:

There’s definitely a lot of pressure when you’re the designated support person. It’s possible that others can work “shifts.” Since we came in from out of the country this wasn’t possible, and even if you’re traveling from another part of the country it’s not cheap to have additional people travel to support you. However, if you have kids and you plan to have them with you, I highly recommend another person coming with you. 

So before going further I have to give mad props to my mom. I’m not sure how we would have done this without her flying in from Utah to support us and occupy the kids for five days. For about four of those days, I was fully dependent on her to help with the kids as I attended to Heather. I really didn’t think that I would stay at the hospital for three full days like I did. Yes, I could have left at night to be with them, but I wanted to be sure that I was there every second I could be to support Heather. My mother’s presence allowed me to do that. For that I’m very grateful, as is Heather. Thanks, Mom!

I also have to thank Denise, my wife's nurse.  I was able to keep in contact with her throughout the recovery, via email and phone.  It was nice having that personal access to someone who could answer our questions.

Lodging:

Also, I can’t stress enough how amazing it was to rent a house for 10 days instead of being in a hotel. Our Airbnb listing in San Antonio was perfect. It was close to the Medical Center and PRMA, close to amenities (food, parks, groceries, drug stores, etc.), and our hosts were so kind and concerned with Heather’s progress. We were able to have the kids playing games and watching TV in one room while she rested and healed in another. We were also able to stock up on groceries and live life as we would have if were in our home town. This feeling of belonging was priceless. I can’t think of another lodging situation where we could have felt this way.

- Jared

Comforts of home were truly appreciated.

Grandma, It's Going To Be OK

In a 1991 LA Times article, my grandmother was interviewed about breast cancer in our family.  She sadly passed of heart surgery complications in 2006, right after the birth of my second child.  The two quotes that stick with me from the article are the following:

"I thought I was helping my daughter do all the things that were necessary. And she followed all the rules. What is frustrating is that the results from treatment now are not a heck of a lot better than they were when I had cancer. I am watching her two daughters, ages 22 and 14. I'm hoping the outlook will be better for them, but I'm not sure it will. Twenty-five years after my cancer, why should I still be worried about my granddaughters?" 

And in speaking about my mother...

"At one point, she asked her doctor if she could undergo a prophylactic mastectomy--a procedure where the breast tissue is removed and replaced with implants to lessen cancer risk. She was discouraged from taking that radical step." 

LA Times

I would LOVE to be able to sit face to face with my grandmother right now and show her just how far results from treatment have come since she and my own mother were fighting the disease.  I've gone from a 14 year old to 38 year old and I've been given a wonderful outlook on life with my own children.  I was able to get the BRCA genetic test thanks to my grandmother taking the test months before me, and as a result, I qualified for a prophylactic double mastectomy, no questions asked.  


You don't have to worry anymore grandma.  I've been taken care of by the best. 

My Grandmother

My Mother

Me