(I’m in the process of formatting this for both web and print distribution–I hope to spread it widely as I think it is needed–but while in that process, I wanted to make it available here)
A Patient’s Perspective
First, I want to say that the care and information I received from the medical team at The University of Arizona Cancer Center (specifically Dr. Ley, Dr. Larson, and their teams) was extremely useful. But as I discussed with my doctor, most surgeons have not experienced the surgeries they perform, and therefore have limited knowledge about what it’s like to live through the experience. They are experts in surgery and medical knowledge—not in life after a mastectomy.
I am recovering from a double mastectomy and undergoing breast reconstruction. I write this letter to give women who face this surgery some personal advice that might help make their physical recovery easier during the first few days after surgery. A woman and her caregivers have many psychological and emotional issues to deal with—I know. And I also know it will be a long process of healing and recovery. But I feel it important to share this information about basic physical needs that you might not hear elsewhere. My hope is that this information will be a first step in a long journey of helping women recover from breast surgery.
I offer this information not as a medical professional or a therapist, but as a woman who learned some valuable tools to make life after surgery a bit more comfortable.
Each woman’s experience will be very different. I’ve talked to women who had a single-breast mastectomy and had very little of the difficulties I’ve faced. I’ve talked to women who have had double mastectomies and had much more difficulties than I did. Also, the options a woman chooses (if and what type) about reconstruction makes a significant difference in the challenges they face after this type of surgery. The decision to have breast surgery of any kind should be made with much consideration and input from medical professionals. Given all that, I hope my insights prove helpful.
I was told to wear a button-up shirt the day of surgery and have one to wear home after one night in the hospital. This is good advice. But what I didn’t know was that I would be unable to put on a T-shirt or another pullover top for over a week. I had one button-up shirt. Since I was unable to do laundry (reaching in a washing machine or a dryer was impossible for me the first five days after surgery), this created a wardrobe problem, and I ended up wearing my girl friend’s husband’s XL Hawaiian shirts for a week—not very attractive. I suggest you plan to have at least three or more very loose (perhaps two or three sizes larger than you normally wear) button-up short-sleeved shirts and pajama tops on hand.
You may have surgical drains and a pain pump attached to your chest and you may be very limited in how far back you can move your arms to put on even a button-up shirt. In case you do feel like getting out of the house a few days after surgery, you’ll want something that you can both put on and that will conceal these medical objects. Certainly, you will be going to post-op appointments with your doctor, and I found I felt better if I could wear something that both concealed the drains and pump and looked fairly normal.
Loose fitting elastic waist pants or skirts are also a must. Because of the pain in my chest, I found it impossible to pull up any tight fitting pants, including yoga pants. At home I wore mostly lose fitting shorts with an elastic waist, which gave me the freedom to go to the bathroom on my own without calling for assistance in pulling up my pants. Loose fitting skirts may also be an appropriate option.
Ask a friend or loved one to shop with you if possible—shopping for post-mastectomy clothes may be the first time you actually realize this is “real.” One woman told me she broke down crying in the dressing room as she tried on post-op button-up shirts. “It just hit me,” she said, “I’m going to lose my breasts.” These moments of realization can be very challenging.
I was told that I wouldn’t need any home care after spending one night in the hospital after surgery—and while this may be true for some, it simply wasn’t true for me or the many women I’ve talk to who have had this procedure.
I needed 24-7 care for the first three days after surgery, and much help for daily tasks in the weeks that followed (see “Limitations” below). You might not need this help, but I think it’s useful to have in place in case you do. A spouse might provide most of this assistance, but if your spouse has to work or (silly to imagine, I know) get some sleep, an additional person can be of immense help.
If possible, connect with people you trust and organize help in advance. After surgery you may not feel up to the task. I asked one very reliable friend to be a “contact” person who helped me organize help for in-home care, shopping, transportation to post-op appointments, and meals. She checked in with me once a day and asked what I needed. She in turn had a list of contacts who had offered to help and whom I felt comfortable asking for help. If it’s feasible for you, you might even consider hiring a home-health care nurse or having that available should you need it.
A final word about people. If you’re anything like me, this will be an incredibly emotional experience. Having supportive and loving friends and/or family available to talk with—even scheduled visits—was invaluable for me in that I could express my sadness and fear. More importantly we could laugh and find joy, which I believe is immensely helpful to the healing process.
FURNITURE AND ACCESSIBILITY
I was given wonderful advice from another mastectomy patient to have a recliner chair in place before I returned from surgery. I covered the chair with a fitted sheet and surrounded it with various pillows. It was impossible for me to lay flat for the first two weeks after surgery, and the tendency to try and roll over on my side while sleeping caused great pain. So the recliner was a perfect space to both rest and sleep during the two weeks after surgery. For the first few days, it was impossible for me to reach the lever that moved the footrest (one of the many reasons having full-time assistance for the first three days was so important for me). Had I not had help available, getting up to go to the bathroom anytime of day, especially at night, would have been impossible.
If you don’t have a recliner, make sure you have some support to prop yourself up in bed or on a couch. For the first few days, I could not have done any of that on my own. I needed someone to assist me by pressing behind my neck to help me sit up because any use of abdominal muscles involves the chest also.
Before surgery, place the things you might need on a table near your space. Mine included lip balm, medications, water, phone and charger, lotion, pen and paper, a good book, and crossword puzzles.
Regardless of how much support you have, it’s important to think about limitations you may face during the first few days and weeks after surgery. You may experience pain; you may experience sadness and depression—eliminating the additional frustration of unexpected limitations can be very helpful.
I suggest that anyone about to undergo a double mastectomy try this exercise: have a friend tighten a belt around your arms just above your elbows, fastening them to your sides. Imagine that you are not only physically limited in this way, but also in pain (this is exactly how I felt for about three days after surgery; both the limitation of my arms and the pain began to lesson slowly over the next few weeks)—then see what you can accomplish and what you cannot.
Here’s a list of some things that might prove difficult and some solutions:
- One activity required of post-mastectomy patients is to “strip” the surgical drains a few times each day. It was impossible for me to reach the tops of these drains and perform this seemingly simple activity without help. However, the stripping of drains felt to me very intimate—a close friend, family member, or professional health-care assistant may make this experience feel less invasive.
- One potentially difficult problem that few will tell you about is that you may not be able to wipe yourself after using the bathroom. An ironic side benefit to the constipation that many experience after anesthesia for me was that I didn’t have such concerns for the first three days after surgery—by then I was able to reach to wipe myself. (Many people experience constipation after having been under anesthesia. I recommend you have a bottle of magnesium sulfate on hand in case this is an issue for you. It certainly helped me when I began to feel the discomfort of constipation after three days.) If constipation is not an issue, and if you are in such pain that your arm reach is very limited, try using a pair of rubber-coated kitchen tongs. Wrap either toilet paper or a wet-wipe around one side of the tongs, and this may provide you with enough reach to clean yourself.
- I could not get up out of or sit down into my chair without assistance for the first two days. I spent many nights in a recliner chair, and it was impossible for me to reach down and pull the lever that either pulled up or released the footrest. Again, the only solution to this for me was having someone near to help—someone willing to wake up at two o’clock in the morning to assist me so I could get to the bathroom.
- I was not able to cook (even microwave meals proved a challenge; if your microwave is above your oven, you may not be able to reach it), do laundry, or water plants. Plan in advance to have accessible meals and help with these activities.
- I also found that I could not reach the water glasses on the second shelf of my pantry, and so I asked a friend to set a few glasses on the counter that were within reach. I put things I needed access to in the fridge on the lower shelves. I pre-opened tough to open bottles like drinks and salad dressings and left the lids only slightly closed. I set out a small frying pan, olive oil, and a few standard spices as in my kitchen these would have been unreachable for me for the first few days. A sturdy kitchen stool may be useful. The amount of preparation you need will depend on how much in-home help you have. If you live alone, consider taking many precautions to make sure you have access to items you need.
- Holding a phone to my ear was painful, and lifting a laptop computer impossible. Regardless of your tendencies for communication, you will need to communicate with your doctors, refill prescriptions, and schedule appointments. Have a phone charger near your resting space and within reach (use the “belt test” to check this). Consider having your computer plugged in and in an accessible location such at the kitchen table or a desk. Using the “speaker” function on my cell phone helped make calling easier, and, if you want privacy, consider having a phone head set.
- You will be able to shower soon after surgery, but make sure you can reach your soap and your towel! A shoelace or a soft belt hung around your neck can be used to hold your surgical drains while you shower. I was provided with a very handy belt that held the drains, but it was difficult to dry after showering. Leaving the belt off and holding the drains with a thin bathrobe belt around my neck was much easier. Having a package of disposable face/body wipes may also prove useful in case you don’t feel up to showering for the first couple of days.
- Though you maybe able to shower, if you tried the “belt test,” you will realize you cannot possibly reach your head. After three days, I was desperate to have my hair washed. I was unable to wash or even brush my hair for nearly a week. Friends or family can perhaps help you with this; but I found lying back in a salon hair-washing chair was fairly easy after three days post-op. I asked a friend to let me come to her salon after hours so I didn’t have to worry about being in public so soon after surgery.
- I was unable to drive for one week after surgery, and even then driving was a challenge. If possible, arrange in advance to have someone drive you to your post-op appointments. Even after I was able to drive, grocery shopping was a challenge because many necessary items like milk are placed higher than shoulder level—unreachable. Carrying bags of groceries was also not possible for me. Either stock up well on groceries before surgery, or ask a friend or family member to shop for you or accompany you.
- One final note about the limitations you may face in terms of accessibility: I was unable to reach either kitchen or bathroom faucets to turn on water. This limitation made brushing my teeth or washing a dish in the sink impossible. I cannot emphasize enough how important it was for me to have help doing even the simple things to which we normally give little thought.
Seeing yourself in a mirror for the first time after a double mastectomy (or any breast surgery) can be quite difficult. For some this may be easy. But I think it a serious disservice not to warn women who will go through a mastectomy (of any kind) of the potential psychological challenges they may face afterwards. A mastectomy is an amputation. You are losing a part of yourself that physically defined you as a person and as a woman. I recommend you talk to women who have been through this, research survival stories, seek out support groups, or perhaps talk to a therapist. For me, meditation practice and therapy are invaluable tools. The sutures and scars will look much worse to you than they do to your doctors, nurses, or loved ones. The sutures, the drain tubes, the pain pump lead—these are temporary. (The Scar Project, http://www.thescarproject.org, is a wonderful organization whose mission is to reveal the beauty of life after breast surgery.)
I say this without hesitation: you are beautiful. You may see yourself as terribly damaged, but it is only temporary. Be prepared to accept what you may look like knowing that you will heal and be whole with or without reconstruction. While physical image in no way defines who you are as a person, we cannot deny it is a part of our psychological well-being.
Remember that you went through this surgery to save your life. It was worth it.
With all the best to you,
Julia Ferganchick Hilton, Phd
Post mastectomy patient who has all hope for you and your health
I am very open to answering questions or helping women and their caregivers with pre- or post-op questions. I am not a physician, nor am I a therapist. I make no pretenses to be anything more than a woman who has survived. I know first hand that these amazing medical professionals are your best resource for help. Use it. But living through this process can be a challenge, and sometimes what we need is just to hear a kind word from someone whose a little further down this road than we are.