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.

The Other Man

I write this post mainly for the male supporters in our lives.  The ones who would do anything for us.  The ones who we love more than anything.  The ones we've dedicated the rest of our lives to.  The ones who are standing by your side through your diagnosis, your treatment and your recovery.  The ones who kiss us good morning and kiss us goodnight.  The ones who may not understand this new relationship with the "other man" in our lives right now, but who will hopefully sympathize with what we're going through, and later understand what it was all about. My husband falls into this category.  We might talk endlessly about this other man, sing his praises and confer with other women about him, and I want to help you know why we do it.

Women, by nature, have basic needs that need to be met.  We need to feel safe and secure, we want to know we are loved, we want to nurture, we want to be appreciated, we want to feel like we can count on someone and we want our feelings to be understood (even if you don't really understand).  We form relationships and bonds with others when these needs are met.  Women hold relationships near and dear to their hearts.  We protect our relationships.  Its natural.  Its why you are number one in her life right now.  You met her needs.  So what's going on with this other man she's talking about so much?  She's made a new friend, that's all. 

                                                 

When a woman goes through something life-threatening or life-changing, the people immediately involved in that experience become forever bonded at the heart.  For example, her doctor.  He becomes a hero in her life.  This can be any doctor in her life.  Her therapist, her OBGYN, her surgeon...you name it.  They see her through some of the hardest times in her life such as dealing with trauma, welcoming new life into the world or helping her go through the struggles of conceiving, or even performing life-saving surgeries.  This is a person who listens, sympathizes and shows concern for what she's going through, just like you do.  We, as women, tend to open up and talk to these people in our lives.  We love to talk.  And part of a doctor's job is to listen.  We like that too; we value that.  So its completely natural that her doctor becomes an important person in her life with whom she connects and holds dear.

I recently read an article that I can't get out of my mind called, "It is OK for the doctor to cry."  I was so touched by the story as it was so refreshing to hear the other side of the doctor-patient relationship, from a doctor's perspective.  It's not often you hear this, nor find it.  It's actually quite rare in my experience.  Early on the author recounts a moment with one of her patients:

She begins to weep into her husband’s chest but somehow manages to thank me for taking care of her for the past week and being “one of her nicest doctors.”  She even stands up to hug me.  I leave the room really quickly with tears forming and sneak into the bathroom as I begin to cry.

This doctor is humanized.  The doctor met the emotional needs of her patient, and a bond was formed.  The articles goes on to describe the compassion a doctor forms for her patient, and how she sees her patient as something more than a medical file number.  Her patients are mothers, fathers, sisters, brothers and more.  This is how I felt.  The author ends by saying:

Yes, we should distance ourselves emotionally if it affects our medical decision-making but when it boils down to patient care, feeling for a patient and his or her family makes medicine humanistic and real.

My journey was all about forming relationships.  I "read" people quite quickly, and I make decisions based on connections and my heart.  I know when I don't feel good about a person, or when we're not a good fit.  I made judgements based on comments doctors made in social media, on reviews left by other patients, by how the front office handled my calls requesting information and by how I connected with the doctor (IF I was allowed to actually talk to the doctor).  I needed what the article said, "make medicine humanistic and real."  If my needs weren't met, you weren't going to touch me with a knife.  My husband knew I had made my choice in surgeons a long time before we actually Skyped with my surgeon, as I had a good gut feeling from the PRMA patient liaison, Courtney, with whom I had been working. I couldn't stop talking about PRMA and Courtney.  Everything was, "Courtney said...", or "Courtney's so nice" or "Courtney is probably so sick of me...".  

 My needs, however, were eventually met with my chosen surgeon, Dr. Chrysopoulo.  He was real.  He IS real.  He provided assurance early on that built my trust. Throughout the process, he made comments that personalized the experience like, "if it was my wife...," or "you're the love of his [my husband] life and mother of his kids. Doesn't matter how positive you are...all bets are off [referring to my husband's biggest fear being that they'd find cancer when operating, but hiding it from me till all was said and done]."  My doctor cared about us as a family.  He took the time to ask my husband how he was really doing, husband to husband, after the surgery.  I kept telling my surgeon that I trusted him because he had taken the time to build the trust.  During my in-person consultation, he'd ask me if I wanted A or B, and I'd reply telling him I trusted his opinion and left him with the ultimate decision.  He had been welcomed into the 'circle of trust.'  He humanized the experience, just as the doctor said in the article.  In return, my husband listened to a lot of, "but Dr. C said.." or "according to Dr. C...".  I get it.  I talked a lot about my doctor, still do.  And Denise...oh Denise.  She's my nurse, and she's wonderful.  Up until my last day in the USA, I kept referring to Denise like she was my BFF and my husband would laugh.  She captured my heart too.

                                               

In a recent article, I spoke about the power of social media.  My doctor is wonderfully involved in it.  It's fun to see him interacting with people, patients, strangers and other doctors.  It's more fun to see how many other women are out there speaking highly of him, you're proud that you chose someone so revered.  I've become friends with some of his patients, like Terri, who also formed a relationship with him.  She spreads the word about how wonderful he is as well, like a personal cheerleader.  We love what he's done for us, plain and simple.  He's a doctor, he's brilliant at what he does and he cares for his patients.  We've gone through a very emotional time together, so of course we're all connected by that 'something common' between us.  I was talking to a friend from home this morning about my experience and how I was going to write this blog post.  She replied with, "it is such a unique relationship and situation." She totally understood and felt that I should write this to help other men understand what is happening.

My husband gets it now.  He said today, "I totally get (and support) the bond that you have. He essentially saved your life, and those words went through my mind weeks ago."  I know it must be hard to have your significant other speak so highly of someone else so often.  I don't think I'd like my husband coming home from his appointments speaking about his amazing female doctor and how supported he feels by her!  Not fair of me, I know.  But in the end, we're all friends now.  We can all chat like we've known each other forever, and we're all connected via Twitter and Facebook as well.  In the end, just consider your significant other's doctor, with whom you've all shared a major life experience with, as another friend to add to your circle.  At least that's my hope.  I hope you have a doctor who humanizes your experience.  However, I don't think my husband and I will ever be able to call him by his first name...he'll always be Dr. C to us.

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.