Chris Spires
Caregiver
A Husbands Journey Through a Double Mastectomy (Tips on Coping, Supporting Your Wife and What the Doctors Don’t Tell You) Breast Cancer. Like so many, I’ve seen the countless pink ribbons, watched pink t-shirted individuals along fundraising walks and been aware of the NFL raising awareness for Breast Cancer driving the wearing of pink every October. Breast cancer is ingrained in our society. That said, mine remained a passing awareness. That was until October of 2016 when my wife Heather was diagnosed with stage zero breast cancer, double mastectomy.
Internally, my gut told me her biopsy would reveal something. This mental red flag gave me time to prepare. Bottom line, I didn’t care what happened as long as she stayed alive. I needed her by my side for the next 50+ years. We were lucky. Heather’s cancer was caught so early we were given the benefit of time between diagnosis and surgery. I turned to online research so I could prepare as much as possible. I toured sites about the mastectomy process, read details about surgery and recovery, and pored through blogs, comments and personal letters. I found an infinite number of articles for the patient but very few pieces of advice for the husband. What the hell do I say to her? HOW do I say it? What is she going to look like? Will her breasts look natural? How do I handle the topic of reconstruction without being excited at the thought of big new fake cans? (Don’t judge, you will think about it too.) Now, on the other side of the mastectomy process, I want to share some real life tips on navigating this new world that might offer the next husband/mate help in what to say, how to prepare and care for your wife through the weeks ahead. NOTE: My wife was blessed to avoid radiation and chemotherapy, so please understand this viewpoint is strictly about the mastectomy process.
First Step: Ask for Directions Just like there is no one right way to grapple with having breast cancer, there is no one right way for you to cope and show support. Use my mistake as an example: Soon after diagnosis, my wife and I were talking about surgery and reconstruction. At one point, she started staring off into space and I could tell she was struggling. Thinking I was being a hero, I sat next to her, pulled her close and hugged her tight to let her know everything was going to be ok. She just sat there like a dead fish—no hug back, no nothing. I could not have read that situation more wrong. Later that night, I swallowed my pride and admitted I didn’t know how to best show support. Clearly physical affection wasn’t it. She laughed, thanked me for trying and told me she didn’t need touchy feely. What she really needed from me was to attend the doctor appointments with her. She pointed out I think of things differently and am the better planner. I could be there to remind her we can’t do surgery on the 14th because she’s chairing the school holiday play that day, etc. Ask your wife what she needs. It’s better than the dead fish.
Start Preparing: Google Images Is Your Friend The single biggest piece of non-negotiable advice I can offer is go on Google Images to view before & after pictures of a mastectomy. I’m not going to sugar coat it; this is NOT your run of the mill boob job. There are going to be scars, perhaps in multiple places. Her chest might be flat, that is until they start filling a tissue expander with saline fluid. She might temporarily lose one or both nipples. Your job is to look at these faceless, two-dimensional images before you see it in real life on your wife. Stare at the images until you can mentally Photoshop your wife’s face onto the screen and keep a poker face. She’s going to be nervous enough as it is seeing her chest for the first time. Imagine if you show your, albeit understandable, shock or dismay the first time she takes those bandages off. She will feel awful and you’ll feel terrible. Most likely, your wife will see before & after pictures during her plastic surgeon reconstruction consultations. Go with her if your schedule allows. Learn the process and various options. Ask questions. You’re in the boat with her. Speaking of Google Images, you’ll start hearing about “drains” and “tubes.” Your wife may emerge from surgery with drain tubes protruding out of her sides. These need to be emptied several times a day. Medical professionals can’t prepare for you for the reality ahead but I will. The drains are not pretty. Our discharge nurse spent a total of 72 seconds showing me how to strip and empty the tubes. She glossed over the “chunks” in the fluid. Luckily I come from a medical family and can watch open heart surgery while eating a turkey sandwich, but I wasn’t quite ready for the bits of tissue and clots in this dark orange colored fluid. Remember, this is all about your keeping a straight face, not making things worse for your wife.
At the Hospital: Bring Something From Home to Cheer Up Her Stay When my wife was wheeled into her room after surgery, I had a framed picture of our sons waiting on the table. Bring in a picture of your dogs, or a memory of a fun night out. Have your kids make her a poster or banner. Any small reminder of home to be there when the pain sets in. She may be in the hospital for a night or two after surgery and even something minor will break up the coldness of that room.
At Home: Things to Have At Home After Surgery This list evolved over the six weeks we spent preparing for surgery. Thanks to lots of advice and homework, we had gathered some seemingly random items that helped us all cope.
1. Clipboard. Dates/times of various medications as well as a daily log of the drain output have to be kept. A clipboard helps organize those papers, and can be easily carried to post op appointments.
2. Walkie Talkies. Shades of kids’ toys, but this means you can communicate with her from anywhere in the house. Texting works well too. (Full disclosure, my wife wanted a bell. I said “Hell no.”) Either approach will mean she doesn’t have to yell and you aren’t running upstairs to ask what she needs, only to find out you have to run back downstairs to grab something.
3. Hygiene. As long as your wife has drain tubes (those damn tubes again), she won’t be able to take a shower. Body wipes (similar to wet wipes) will help with daily cleaning. Oh, and make an appointment at her salon and take her to get her hair done. It’s amazing what a little pampering, shampoo and curls will do to brighten her mood. You’ll definitely earn points. If she doesn’t have a salon or doesn’t want to leave the house, buy a bath chair from your local pharmacy. A chair in the bathroom (or wherever you set up shop) also helps when stripping the tubes or sponge bathing.
Clothing: My wife wasn’t able to lift her arms for the first week or so, so button down shirts or things that zipped up fully in the front helped. Your old button downs will work as well as purchasing cheap ones (get one size bigger so it’s easier to take on/off). Camisoles (this is a fancy term for a tank top) with built in drain pockets are available on-line or, alternately, you can safety pin the drains to her shirt. For the first week or two, anything she puts on that isn’t buttoned/zipped, she’ll have to step in and pull up (again, go one size bigger). And for God’s sake, no yoga pants! They are skin tight and impossible to get on when someone else is pulling them up. Think big, baggy and roomy.
Simplify the Well-Wisher Traffic: We were fortunate. Numerous friends and family offered help and food, more meals than our family could eat. Between you and me, while I knew these individuals meant well, I didn’t want people stopping by every single day ringing the doorbell dropping off a lasagna and (understandably) wanting an update. I put a big cooler outside the front door with a note saying “Dear Friends—Thank you so much for your help and support! Please place any food in the cooler. We are so grateful. Thank you.” I also put a piece of tape over the doorbell with a note, “To keep our crazy dog from barking and waking someone up, please do not ring the doorbell. Thanks.” Okay, while this wasn’t entirely true, it allowed well-meaning folks to drop off a hot casserole without needing to come inside and wake my wife. Or me. Remember, you’ll need sleep too. The Best Ideas Are Stolen Greeting cards allow us to more eloquently say what is right in any situation. There are no greeting cards for this. If you’re not sure what to say to your wife, try these quotes I found from other sites/blogs: “I don’t care what they take from you as long as I can see your face.” “Your scars are beautiful because it means you are going to live.” “I don’t care what you’re missing. That’s not what you’re about for me. I’m not counting how many of what you have. I just like being with you.” You can find others on-line. How YOU Doin’? Oh that’s right. You’re in this too. Henry David Thoreau famously stated in Walden that “the mass of men lead lives of quiet desperation.” We men are taught to be strong, emotionless and say that everything is fine. I’ll raise my hand and call BS. I didn’t fool anybody and neither will you. It sucks. You’re scared, stressed out and worried. Find a buddy or someone with whom you can be authentic. When he asks how to help, tell him to be there when you need to vent. Because you will need to vent. One day I was so exhausted I could barely function, but didn’t have a choice. There was laundry to do, tubes to strip and medicine to administer. At my wits end, I called a friend and just vented about how exhausted I was. That little two-minute tension release did wonders.
Grab Your Pom Poms and Smile Through The Setbacks. Things might get rough early on and you may have to play cheerleader. Healing may be slower than expected, melt-downs can occur, emotions can reach critical mass, etc. Hopefully, as bad as it sounds, things could be worse. Take a deep breath and tell your wife she looks beautiful (even if she hasn’t showered in two weeks). Tell her the scars don’t look bad (even if they do). Tell her it will all get better (even if you’re not sure it will).
A Knight in Shining Armor: My job afforded me the flexibility to attend doctor appointments and work from home while taking care of my wife after surgery. Yours may not. I’m not here to judge. If it’s too much to juggle with work and other responsibilities, you may decide to bring in a parent or sibling to care for your wife. It’s more than acceptable. But even if you’re working 18-hour days with the weight of the world on your shoulders, get in the boat with your wife. Roll your sleeves up and strip her tubes occasionally, even if Mom is staying with you for two weeks. It’ll give you an appreciation for what she’s going through and earn you some always needed points. Do the laundry without asking. Text her occasionally throughout the day and ask how she’s feeling. I even shaved my wife’s legs one day and did a pretty good job. She was so appreciative and I got some closeness (remember, no hugging!). Women no longer need us to slay dragons or rescue them from a tower, but taking her to get her hair washed and dried, or ordering her favorite dinner to-go could rate you Knight in Shining Armor in 2017.
As husbands of Breast Cancer Survivors, we have become members of a club no one wants to join. It’s not easy. I hope these tips ease the way for you and your wife, and I hope you do it better than I did. I hope this terrible situation brings you closer and that you make fewer mistakes than I did–made one yesterday in fact. But, then I’ve also learned that so many things are no longer a big deal. I certainly gained a new appreciation for my wife and am utterly amazed at her strength and perseverance. You can do this. I’m rooting for you.