TRAM Flap Patient Advice
Drugs and more issues
What you want to know before heading into surgery
A new friend, a breast cancer survivor, recently wrote to me and asked what advice I had to offer anyone preparing for a TRAM Flap surgery. I realized, I've been writing about my experience of having this barbaric surgery, but I haven't offered information about what to do to ready oneself for such an operation. So, here goes...just please remember, my experience is based on not having cancer and choosing this surgery to avoid my high chances of breast cancer. My experience is very different from someone with breast cancer who may have several surgeries before/after/during chemotherapy and radiation treatments.
Prior to TRAM Flap surgery
Choosing your surgeon
I don't claim to be an expert on how to choose a surgeon, and I must admit, I was in a better position than many people since my sister had already been through breast cancer twice and had two of the best surgeons in the San Francisco Bay Area. Therefore, I was familiar with their work. Regardless, I still wanted to know how many of my type of surgery they had done. I wanted to see photos of my plastic surgeon's work. I wanted to know the success rate and what kind of failure statistics were available.
As much as I was freaking out about having this surgery, I knew I had to find out some of the details. It may seem ridiculous to say this, but do your research. Know the type of work your surgeon does. There can be huge differences in the results offered by various doctors. As with many medical-related things...ask nurses who does the best work; who they would go to if this was their body.
Someone like me who didn't have breast cancer but tested positive for the BRCA genetic mutation in conjunction with a history of an abundance of breast cancer may know they will have the surgery, but it is a significantly different experience from someone with breast cancer. Someone, like my sister, with breast cancer is basically rushed through the surgery process and their choices seem much more limited. I had too much time and too many options to think about, but that also gave me more of a chance to pick and choose what I wanted and who I wanted to carry out the surgeries. Do your research, or have someone who isn't freaking out about the impending surgery help you in this process.
Once you decide to have the TRAM Flap surgery, if you can, try doing the exercises suggested by your surgeon to strengthen your core and build up your stamina. Of course, that is an extremely presumptive suggestion. Of course, if you are in the middle of doing chemo or radiation, it is understandable that you will be feeling like crap and may not be up to doing any exercise.
I was better at building my stamina than doing the core exercises they offered, but I'm glad I was up to an hour of briskly walking on a treadmill prior to surgery. Do what you can under your doctor's supervision. It seems to help.
If you have children...
My two children were still in school when I had my surgery, so at least they had something to do during the day, unlike now that summer vacation has begun and my 8-year-old's favorite thing to say is, "I'm bored."
Still, they have their weekly activities including music lessons a 15-20 minute drive away. We didn't want to lose their timeslots, so I made arrangements with family and friends to drive them the first month or so until I can drive them myself. I haven't quite reached that goal just yet.
Obviously, if you have the means, make arrangements for summer programs at your local recreation department, sleep-away camps, etc. Or perhaps it's time to visit grandma and grandpa for several nights.
Otherwise, your friends and family become priceless during this time. Once your initial support system must return to work, or whatever, I hope anyone facing this surgery has some good friends they can rely upon for helping with your children. This brings me to my next area of preparation.
Friends and family are priceless
It is during the month or two (or three) following your surgery when you realize how thankful you are to have friends and family upon whom you can rely. You may need to call on people to help with:
- grocery shopping
- picking up medications
- driving to and from doctor appointments
- helping you shower (the first week or so at home)
- carry things, like pillows and plates of food
- cooking meals
- general errands
- and more I can't think of now
Everyone is busy in their own lives, of course, and most people who offer their help when they find out you'll be having this huge surgery likely won't be as available after your surgery is complete. Still, if you can find a few friends who can help, that can make a huge difference in your recovery. Or if you belong to a church, synagogue, etc., don't be afraid to contact them for help -- meals, driving, whatever; you'll be pleasantly surprised by the offers of help.
In other words, try to get these things set up prior to your surgery. The more preparation you have, the smoother your recovery process will be when you don't have to worry about these things.
Items to have ready before returning home
Aside from stocking up on every day items such as shower supplies -- shampoo, body wash, etc. -- frozen meals as backups, basic grocery supplies, there are a few items suggested to me that have come in very handy.
- Shower Seat: Especially during the first week home, you may want some kind of shower seat. They sell these at medical supply stores and sometimes at Costco (I'm pretty sure, but check on that). You're not supposed to be submerged in a bath until the incisions heal (not that you'd have the strength to get into or out of tub), so once you are cleared for showers, they will be exhausting at first and you'll want to sit down on something while your hubby, family, or whomever helps you wash your hair, legs, whatever you can't reach.
- Recliner Chair:Another friend told me about this indispensable item. If you don't already have one, purchase or borrow a cushy reclining chair of some sort. I call mine, "the throne," because I've spent so much of my first nearly six weeks in that chair. I have TRAM Flap friends who said they even slept in their recliners the first couple of weeks because you don't lay flat for more than a month after the surgery. I set mine up with an ottoman and a lot of pillows. I have a small table in front of me to hold all my daily stuff. A couch isn't terribly comfortable and they tend to be difficult to get up from.
- Armrest Pillow/Bedrest Pillow: At night the first few weeks, I found this armrest pillow to be extremely helpful when piling up the pillows. You won't be sleeping in a flat position because all your muscles tug too much and it's stressful on your belly scar. And as for sleeping on your side, it's painful. It's taken all this time just to be able to sort-of lay on my side when I hold a big cushy pillow to my stomach and chest. I don't know what it's like for someone who only does one side, but having a bilateral mastectomy doesn't leave much room for sleeping on your side.
- Back Scratcher:I know this sounds silly, but you can't imagine how handy a good back scratcher is. You know the kind...those cheapo, long bamboo stick with the curled end and the rough edge. Trust me, when you can't reach those itches on your back, that's exactly the time your back becomes itchy. In the hospital, you'll find it quite handy when no one else is around and you have very limited arm movement. Scratch your back, your leg, the back of your knee, your toes...there's always something to scratch when your body won't allow you to reach it.
The first week in the hospital
Have an advocate
If there's one thing you really need to know about the TRAM Flap, it's that you're going to have a long recovery time. The surgeons don't tell you as much about the recovery as the nurses will and the first week in the hospital never seems to near an end.
For a great many years, my parents have believed when one goes into the hospital, they should have an advocate with them. The first few days after surgery, when you are groggy from all the pain medication and may not know what you want or need all the time, the idea of having an advocate staying with you is most dire. I realize everyone may not have this type of support system, but if you can arrange it, you'll find it most helpful in the beginning.
Not only is it comforting to have someone looking out for you to make sure you're not given an extra dose of some medication that will cause you to OD, but it's nice to have someone there when you can't move to reach something across your little hospital bed table.
Have something to do...or not
I went to hospital all prepared with two audio books on one Mp3, and hours and hours of music filling another Mp3. I knew I would be drowsy from drugs, so trying to read (and hold) books was out of the question. In the end, it didn't matter that I brought these things...I never used them. I was in and out of sleep most of the time, so no matter. Regardless, I likely would have wanted them had I not brought them.
Also, I wanted to write whilst I lay in bed, so my computer was a must. It was also rather convenient the hospital provided internet access. Looking back, I don't know how I got through some of those first blogs. My mom actually helped me prepare the photos for downloading them to my stories. (Advocate to the rescue again)
I didn't bother bringing anything like a sketch pad because it hurt to keep my arm raised for any length of time. And focusing on anything for any more than a few minutes was excessively difficult in the beginning. Read my first week stories and you'll read that I could barely keep my eyes open for very long.
Don't over pack
I don't know what I was thinking, but I packed 10 pairs of undies and an equal amount of socks along with extra sweat pants and shirts. Silly me. Other than the pair of undies I wore into the hospital, I haven't worn undies since...the belly scar hurts if pressure from the elastic presses on it. I did wear a different shirt and socks to leave the hospital, but I wore the same comfy pants to go home. The remainder of the week I only wore hospital gowns.
Get up and get moving
I know you won't want to, but as soon as you can, begin getting up out of bed and get walking. It's painful and hurts like a bitch, but it really does help your recovery. You'll be getting out of bed differently from how you likely ever get out of bed -- by swinging your legs around to the side of the bed and raising your body at the same time -- but you will get it. Try practicing it at home prior to your surgery so you get a feel for it.
If you don't get up much, at least make sure to ask the hospital if they have one of the air mattress beds that corrects itself every time you move. Likely, you won't want to sleep on your side because it hurts too damn much. That air mattress bed makes a world of difference on your back.
Leaving the hospital
You may not think of it, but you'll want to have several pillows padding and protecting you from the seat belt and the bumpy ride home. Many hospitals use disposable pillows. If your hospital uses these, bring some pillow cases from home and use these in the car. I find it most comfortable to sit on one and use two in front of me to protect from a tightening seat belt.
When you return home from the hospital
The first week home
You're still going to need a lot of help when you return home. My husband took off two weeks for the time after I came home so he could help with me and take care of the kids. He was there to help get me up out of bed in the morning and continued assisting me throughout the day. He helped with my showers since I couldn't yet reach down past my thighs to wash or dry; to wash my back and my hair.
He was there to carry my many pillows from the bed to my throne downstairs in front of my computer and the television. He was there to bring me meals, drinks, and medications. He would separate the medications into Ziploc bags marked with the time of day I should take the medications; he kept track of all my meds when I still wasn't thinking straight. Get used to taking numerous pills every day. Don't skip your antibiotics to avoid infection and use your pain meds.
If you're not up for reading, Netflix has been wonderful since I returned home. The much-needed pain medication tends to dull your senses from doing anything more constructive than watching movies. Plan on being bored out of your mind.
Walk around...and again, walk around
My husband was very good about getting me out of my throne and walking every so often. It feels really weird the first few weeks. Walk through your house and it feels like your muscles are pulling you downward. Just keep doing it...eventually, it starts getting easier. I hope you have someone to motivate you like I have. If you don't have someone at home to tell you, have one of your friends call you every day to tell you to get off your ass and walk. You'll thank them later.
Getting out of the house
You're bound to go nuts in the house after a week or so. If you're lucky to have someone to drive you, after the second or third week, you're going to want to get out. Take short trips to start. For me, the longest trips in the car have been the 1.5 hour drives to see my surgeon for post-op appointments.
You're going to need someone to drive you around until you're off the serious pain medication...mine is Percocet. I haven't driven myself yet and to tell you the truth, I'm still afraid to face the idea of turning my steering wheel and feeling pain in my chest. I have a friend who has offered to ride shotgun the first time I go out. I hope you have someone to go with you the first time, too. Oh, and don't forget your pillows!
When you do start going out, you may want to ask your doctor about getting a temporary handicap placard. The Department of Motor Vehicles has a form you can bring to your doctor to fill out. (You may be able to print it out online from your local DMV site) Your doctor may say, "Gee, we don't usually get too many requests for those," but get one anyway. Yes, you are supposed to walk, but when walking through the grocery store is a big deal and concurrently exhausting, you'll be glad you have it for a few months. My doctor set it up for six months.
Wheelchair and a cane
If you have access to a wheelchair, you may want to use it the first week or so when you leave your home (with the assistance of someone pushing you, of course). Borrow one if you can. My parents had a lightweight travel wheelchair that was great for the first few weeks home.
Otherwise, see if you can find a cane to use during the first month. They're also much cheaper to purchase. As time goes on, you may not need the cane to walk as much as when you have to stand still; waiting for an elevator, waiting for someone to bring the car around to pick you up, waiting while standing for anything. It's just a little more assistance when you feel like you can't stand any longer and your muscles keep pulling you down and down. Eventually, you'll need it less and less when you go out.
What to avoid
Too hot, too cold
Don't use hot or cold compresses on your new breasts or anywhere on your skin that is numb. First, because your skin is numb, the hot or cold may cause burning to your skin. More importantly, serious burns or frozen tissue can destroy the breast tissue.
Lifting anything heavy
My doctors and nurses all said the same thing. "Don't lift anything heavier than the Sunday paper." I take this advice seriously because I don't want to create any bulging hernias. And anyway, you don't want to feel the pain it causes when you lift anything heavy; pain in your breasts, across your chest, in your stomach or in your back.
Don't wait too long to call a doctor
You've just had very serious surgery. If you show any signs of problems related to your surgery areas or other signs like fevers or foul odors from your wounds, call your doctor immediately. If there's excessive oozing or redness, call your doctor. Ask your doctor what to look for with regard to problems or your TRAM Flap not working and don't be afraid to call.
Don't forget to take a photo
When I had problems with my new belly button, for instance, we would take a photo with our phone (or a digital camera) of the area that seemed to be getting infected and e-mail it to someone at the doctor's office. Then, they could better decide if we needed to come into the city.
Don't worry about your house or the laundry getting done. No one cares what your house looks like when you are recovering. (No one, that is, except my mother who actually said one day, "I hope the rabbi didn't see your house looking like this.") Let others help you through this difficult recovery. If you don't have friends or family who can help, the American Cancer Society can help with these and other tasks like grocery shopping and driving to doctor appointments.
Wait for showers
Don't take baths and wait for approval from your doctor to take a shower. The first week in the hospital, you'll be given sponge baths; not as satisfying as a shower, but better than nothing.
More questions to ask your surgeon
- If you are having chemotherapy or radiation, there may be a waiting period before you can have TRAM Flap reconstruction. Get these details as early as you can so you can make your arrangements for family/friend help, etc.
- I'm choosing not to have nipples constructed, but you may want to. Find out how soon you can have nipples created. Same goes for areola tattoos and when you can have those made if you want them.
- Find out what size breasts you can have created from your stomach tissue.
- Find out how to properly care for your new breasts with massage, physical therapy, etc., and what signs to watch out for that the tissue isn't taking and is dying. Find out what happens if the tissue dies. I was told I would have to have an implant if that was the case.
- Find out where the incisions will be made and where the scars will be located.
- Find out your options if you're not sure you want to do a TRAM Flap (ie. DIEP Flap which has a higher chance of tissue not surviving because blood flow is interrupted when the tissue is completely detached from your body. Still, it doesn't affect your muscles the way the TRAM Flap does.). Recovery time is different for the various surgeries, so do your research to choose what's best for you.