The months leading up to my prophylactic mastectomy were
fill with anxiety, worry and stress over whether or not I was making the
“right” decision. Of course now I can say with absolute confidence that
it was the “right” decision for me, but during the ten months between receiving
my BRCA results and having my surgery I feared the unknown. Questions
like “will I regret my decision,” “what if I am unhappy with the results,”
“what if something goes wrong,” “what if I don’t wake up from surgery” flooded
my mind almost constantly. The FORCE message boards and facebook groups
such as “Prophylactic Mastectomy” helped answer most of my questions and ease
my mind. I began to grow more and more comfortable with my decision as my
surgery date approached.
I tried to be as prepared as possible for my recovery.
My mom came to Florida for two weeks, I turned our recliner into my new bed,
all of my antibiotics and pain medications were filled, the pantry was stocked
with healthy food and my spirometer was always handy. Still, there were
factors that I hadn’t considered. How was this surgery going to affect my
body image or my physical and emotion strength?
My friend Vikkie and I put together a list of pieces of
advices we wish we had received prior to our surgeries. In no way would
this have changed my mind on having a mastectomy, but it may have helped ease
the struggles post-mastectomy. (Please note, this is not medical
advice. These are a few tips that will help you through your recovery.)
Body Image
If you’re having a mastectomy, whether it’s prophylactic or
medically necessary and whether you choose to have reconstruction or not, your
body is going to change and with that your body image may change as well.
I wish I had lost a few extra pounds and exercised more
before my surgery. It wasn’t medically necessary, but I think it could
have helped me heal faster. A few days ago I was trying on bathing suits
in the dressing room of a local department store. I could only guess what
size top would fit me since I hadn’t been officially measured yet. I
grabbed a medium, large and (gasp) extra large top and headed to the dressing
room with confidence that I would look fabulous. I struggled to squeeze
into the medium, but quickly gave up with that size after a few seconds.
The large didn’t sit right over my belly. As for the EXTRA large… it fit
me, but my new chest that used to be a measly b cup was popping out of the top
putting Pamela Anderson to shame (not in a good way). I quickly changed
back into my tee shirt and ran out of that department store certain I would
never step foot on a beach again.
As for Vikkie, she says, “I went smaller in breast size, but for someone
who has been overweight for a few years one of the first things I thought was,
‘my stomach looks huge.’ It’s not huge, but now that my boobs are smaller
everything else feels bigger. Do not put yourself under any pressure to quickly
lose weight after a PBM because your body is still healing. If anything, take
up small doses of exercise which can aid in your recovery after your surgery
Depending on the outcome of your surgery you may gain body confidence, but for
others they may lose it. My implants have not settled right so a lot of my tops
look odd, any horizontal striped tops look very strange on me, but then I have
a top I brought some years back that fits great. You need to be prepared
that your favourite top that was always your fall back may now be the top you
look worst in.”
So what can
you do if you feel your body image has changed? First and foremost,
remember why you chose to have this surgery. You chose life. You
chose not to let cancer beat you down. You are not alone in these
thoughts, and there are other women who have walked in your shoes and swam in
your bathing suits. It’s also important to note that your new “girls” may
be more visible to you than they are to others. If you’ve just had your
surgery it will take time for the swelling to go down and for everything to
“settle”. Retail therapy may be the best medicine! Have fun
shopping for your new wardrobe. You’ve been through hell and back, so
rock your new look with all the confidence you can find.
Sleeping like a baby, or sleeping like you just had a
baby?
Mommies out there can relate. Remember when you
brought that precious bundle of joy home from the hospital and your world is
perfect and you could stay up all night watching him sleep and everything was
so peaceful? No? Me neither. I remember late night feedings
and diaper changes, smelling of baby vomit and not remembering if I took a
shower that day. That’s kind of how it was when I came home from the
hospital after my mastectomy, except the bundle of “joy” was my expanders, my
world was perfect when it was time for pain meds, and I stayed up all night
watching Jimmy Kimmel. The late night feedings turned into late night
medicating, the diaper changes turned to drain stripping, and forgetting to
shower became not being able to shower.
Vikkie remembers her stay in the hospital as a struggle.
Staying in ward as opposed to a private or semi-private room can make it
difficult to catch up on those much needed zz’s. She says, “Be prepared not to get much sleep,
but don’t be scared to ask the nurses for something to help you sleep at 2am
when ‘that woman’ is screaming in bed 92 again.”
I spent
much of my first week home from the hospital sleeping in my recliner after my
morning, afternoon and evening meds. My nights were restless, especially
once I began weaning off of the pain medication (more on that later). I
couldn’t sleep on my belly or side for a few months, and the rock hard
expanders made sleeping on my back difficult.
I suggest
having a recliner handy to sleep in for the first few weeks. Have you
ever tried getting in and out of bed without using your arms for support?
It’s not easy. Stock up on comfy pillows like body pillows or backrest
pillows. Always have your favorite blanket or stuffed animal available
for cuddles (admit it, you have one too). You can always try chamomile
tea, lavender, baths (once you’ve received the OK from your doc) or massage
(again, get your doctor’s approval first), but what works one night may not
work the next. It could take a few weeks to return to your old sleep
patterns, but in the meantime read some books, watch movies or post some crazy
facebook statuses (um, definitely never did the last one).
All I
Need is Love, Pain Meds and... I love unicorns!
I hate
medicine. I hate everything about it. I can’t swallow pills without
fear that I will choke and die. I didn’t have to worry about choking and
dying in the hospital because I had an IV that was pumping morphine through my
veins every time I hit the magical little button. With each press the
pain would go away, and the itching would begin. The doctor switched me
to another type of medicine, but I can’t remember which. When I left the
hospital I was prescribed with an antibiotic (big pill), a muscle relaxer
(bigger pill) and percoset (I had a love/hate relationship with this
one). Whether you are comfortable taking medication or hate taking
medication, it’s very important to stay on top of the pain meds when you leave
the hospital. I alternated the muscle relaxers with the Percocet every
three hours for the first few days. My mom created a schedule so we
wouldn’t miss a dose. After a few days I slowly began pushing back the
times for my medication, but if I missed a dose I felt like I was run over by
ten busses and a stampede of moose.
By week
three I was only taking a muscle relaxer in the morning and a Percocet at
night. As I began cutting back the Percocet I found myself with a new
friend to keep me company at night... restless leg syndrome. My pain
level throughout the day was bearable, but as soon as I climbed into bed RLS decided
to pay me a visit. I would lie in bed for hours at a time trying to get
comfortable and fight the urge to get up and run a marathon at 2am. One
night I found myself doing lunges across the house to tire out my legs. I
tried just about every technique imaginable to stop my restless legs. I
kicked them around like I was playing in the World Cup while lying in
bed. I put a bar of soap under my sheets (old wives tale). I drank
a glass of wine (prescribed to me by my doctor). I drank sleepy time tea
and tonic water, took a warm bath, did yoga, rubbed bengay all over my legs
until I smelled like an old man in a nursing home. Nothing helped,
except... Percocet. It wasn’t my go-to remedy every night, but there were
nights that I would scream in frustration and want to rip my legs off just to
get an hour of sleep. After a few weeks of torture, my loyal pal restless
legs agreed it was time to part ways.
Remember,
you do not want to become dependent on your medications, so it is very
important to take them responsibly. If you feel your medications aren’t
working or if you need help weaning off your medication, speak with your
doctor.
Food
Glorious Food!
Nothing is
more important to your recovery than making sure you are getting enough protein
and healthy foods. Thank goodness my mama is a good cook. I drank a
lot of green tea and ate fresh fruits and veggies during my recovery.
If you’re
having late night cravings during your restless, such as Vikkie had, don’t
panic. You won’t find yourself turning into a gremlin if you eat at 3am,
but depending on what you snack on it’s not going to help any bloated feelings
you may have after the surgery. Try to avoid foods that will make you
feel bloated such as broccoli, brussel sprouts and fried, greasy food. Your
body is recovering and needs the handful of blueberries more than it needs the
handful of chocolate chips (did I really just say that?).
Vikkie says, “I found myself with a sudden love/hate relationship with croissants. It
happens and it eventually passes. But if you find yourself sitting at a
McDonalds drivethru at 4am ordering 3 big macs and 4 large fries and there’s
only you in the car then you may want to get someone to hide the car keys at
night.”
Potty
Talk
Potty talk
is an everyday conversation in my house with my three year, but I didn’t expect
to have to bring up this topic to my doctor about me. Being loaded with
anaesthesia for hours and taking pain medication multiple times a day can cause
some issues when it’s time to go potty. Have some stool softeners and
food loaded with fiber readily available when you come home from the
hospital. Oatmeal with blueberries and flax seed was my go-to breakfast
after surgery.
Walking
up a flight of stairs may feel like you’ve climbed the Empire State Building
You may
feel exhausted for a few weeks or even months following your surgery.
What used to be a simple task may now wear you out. Take each day one
step at a time. If making dinner or grocery shopping tires you, take a
step back and relax. Remember, you had major surgery. Don’t expect
to be in the gym at full force right after having a mastectomy, but each day
you will gradually begin to get your strength back.
Reach
high in the air!
There is a
good chance that you will have very limited range of motion in your arms.
If you had expanders or direct-to-implant with your mastectomy they put
the expanders or implants behind your chest muscle. So when you think
about it, as that muscle is being stretched you will feel it in your back,
neck, arms, etc.
The first
week and a half after surgery I could not lift my arms to brush or wash my
hair. I had to rely on my husband to wash and style my hair. I have
to give him credit because he tried to put my hair in a pony tail, but it felt
like he was ripping my hair out every time he brushed. I wore a hat most days
until I was able to style my own hair!
Check with
your doctor about what exercises you can do to help gain back your range of
motion. I would stand facing a wall and walk my hands up the wall in
front of me as high as I could go. Then I would raise my arms out to the
sides as high as I could go. I would also roll my shoulders to the back
and front. As long as I had those pesky expanders I didn’t have full
range of motion, but I’m happy to say that now I do have complete range of
motion back.
Please
check out foobie fitness for post-mastectomy exercises.
Drains,
ew.
Drains are
gross. They are plastic tubes that protrude out of your sides with little
bulbs at the end to catch your nasty, gooey, bloody fluid. You need to
empty them every day, sometimes multiple times each day, and measure how much
nasty gooey, bloody fluid you are draining out of your body. Some people
have two drains, some have four, some have ten (just kidding, I don’t know
anybody who had ten drains). It’s important to keep your drains clean and
keep a log of how much you are draining. You will need to provide this
information to your doctor.
My doctor
removed my surgical bra four days after my mastectomy. The surgical bra
had been holding the drains close to my body and preventing them from
pulling. After my doctor removed the bra I had nothing holding the drains
still. The tension of the drains pulling at the incision site was very
painful. I found that wrapping gauze around me to hold them in place
helped. I put the drain bulbs in a fanny pack so they wouldn’t be just
hanging there.
My drains
were removed six days after my surgery, however the amount of time needed to
keep the drains in varies from person to person. Some women have drains
for a week, others can have them three weeks.
Complications
Complications,
though rare, can occur to any of us. Signs and symptoms to watch out for
are fever, swelling, and redness, pain or hot spots around the incision
area. If you have any of these symptoms, please contact your doctor
immediately.
Ask for
help!!
The most
important piece of advice I can offer to any woman undergoing a prophylactic
mastectomy is to not be afraid to ask for help. My mom flew to Florida
for two weeks to help me after my surgery. Things I couldn’t do myself
included cooking, bathing, driving and taking care of my son. Don’t put too much stress on your body during
your recovery. You may feel well enough
to do something as simple as making dinner one night, but find yourself
exhausted afterward. Take the time to
allow your body to heal.
Special thanks to Vikkie on the other side of the pond for helping me put this information together!
XoXo,
Terri
