[Note: The first of this series can be found here. All previous (and subsequent) installments of this series can be found here.]
Here’s the thing, when I first knew I was going for surgery I googled prophylactic mastectomy—a lot—and saw more than my fair share of images of cancer reconstruction, and learned a lot of terminology.
I stumbled upon plenty of amazing stories online, of cancer survivors and proactive ladies like myself who chose to attack cancer before it could do the same to us (one of my favourite blogs I’m currently following is Mogatos’ journey
here—hiya, Mogatos!).
In all my research though, I struggled. No one was answering what my prepwork-obsessed psyche deemed were the
important questions... questions that continued to plague my micromanaging mind as I thought and rethought strategy right up until the day of surgery...
What was life immediately post-op?
Aside from constantly hearing, “wow—you have such a positive attitude!” this is my number one reason for sharing my journey with the big wide interwebs.
Someone out there is searching for the same answers I was...
Yes, immediately home was a struggle. Mr Lannis did almost everything—and I mean
everything for me. Granted, this post will blatantly travel into the TMI zone, but I’ll put this part as delicately as possible: Mr Lannis was lucky to be relieved of bathroom duty—it was borderline, but I opted for salvaging the last dregs of dignity between us by taking my time and not caring if I was (literally—not figuratively) in the bathroom for seven to ten minutes for a quick pee.
(The key was realizing I had to go far enough in advance that I had time to manage the excruciatingly slow shimmy out of my yoga pants. Also? Panties with the elastic shot have their purpose—they're easier to inch up and down your legs when you do everything with your fingertips, just sayin'.)
And
that is all I’m going to say about that... though this post will delve into the realm of the ugly, trust.
This post, unlike the others, will be more of a list of how I lived and coped post-mastectomy.
Number one thing to remember:
I could barely use my arms.
I was truly T-Rexing it: elbows in, short reach, snarly mood. Lovely.
Lifting a can of pop was questionable the first couple of days (it gradually got better), and if I wasn’t careful and concentrated on making my finger do all the work of opening said pop can’s tab, I’d engage my pecs and
hurt. Drinking said pop involved leaning over to the side table where it sat and sipping from a straw, because shifting to reach and lift it was tricky and the stationary pop/drink from straw method was far easier to manage.
The necessity that is my morning tea I lived without until the one week post-op stage, and then was only doable thanks to a wonderfully thoughtful friend (hi, Tina!) who sent me
a self-stirring stainless steel mug, and
a stainless steel straw to drink my tea through!
YES!
(Tina has an amazing heart, and I’m fairly certain that she earned her angel wings
just from this act.)
To give you an idea of exactly how much help I needed immediately post-op, here’s a simple situation. We have an over-sized recliner with sturdy square arms we rest a board across as a makeshift laptop desk. Recovering from surgery, I could sit in the chair and slowly shuffle my butt to the back of the seat.
I’d then need the boys to help:
- Put the pillow behind my shoulders so I could sit up with better posture (I’d hurt otherwise, and I couldn’t stretch to crack my back thanks to my tight chest).
- Lift my quilt off the floor to cover me (the blanket as a whole was far too heavy, and I had no ability to stretch to reach and cover my toes—the boys would do that for me if I couldn’t kick it into place with my feet).
- Pull the trigger for the chair to kick into recline (angled poorly for my reach, and too stiff for my abilities).
- Lift the wooden board/makeshift desk and put it on the arms of the chair for me (too heavy).
- Reach the laptop (too far) and place it on the board for me (too far for my reach on the stool next to the recliner, and too heavy).
- Open the laptop (too stiff for my weak arms).
Heaven forbid I get settled and realize I needed
the washroom (gasp!).
First thing's first, though. Prescriptions.
Mr Lannis settled me at home (I sat on the couch and chatted with my father) and then hit up the local pharmacy for my meds. An prophylactic antibiotic to take three times a day, and
Tylenol 3s with codeine. I had a sticky note on the side of the bookshelf next to the recliner that told me when to take my meds—I was staggering the T3s and Advil, taking a painkiller every 2 hours on nurses’ orders to keep myself comfortable.
And those damned
Jackson-Pratt drains came home with me. For
ten days.
We're about to enter the truly ew-gross-TMI realm—if you're squeamish, skip down to the photo of clothes, and I promise the remainder of this post will be less than gag-worthy.
Still with me?
Drains. Twice a day I was to empty them into a measure (a specimen cup with measurements marked on the side was provided), and mark how much was accumulating. Once my drainage dropped to less than 30 ml in 24 hours for three consecutive days, they would come out—providing I had a visit with a medical professional on that day, otherwise I’d have to wait.
My home care nurses came to visit me every two to three days until the drains were out. They were, all of them, lovely ladies who peeled back my dressings and peered at my mangled rainbow bruise boobs and rained praise about how wonderfully I was healing (like I had anything to do with what my body was choosing to do—okay, that’s a lie: I did. I was eating well and sleeping lots and listening to instructions).
Back to the drains. The nurses really came to check on them (as in: not
me), since they were vital... the Alloderm tissue matrix, being technically a
transplant needs to have adequate drainage, and those asshole drains had to stay in longer than they would have for other situations (gah!).
Anyone who’s had Jackson-Pratt drains probably knows you have to milk the lines. It’s disgusting as it sounds, so I’m not going any farther into that one (you’re welcome. Trust.)
Mr Lannis was in charge of measuring the drainage—I couldn’t use my hands enough to squeeze drain’s bulb to create vacuum at the same time as capping it, so the chore fell to him. Gag-worthy, yes, and he performed the duty with the stoic all-business attitude I myself reserve for cleaning kidlet pukage.
The drains themselves I’d pin to the inside of my hoodie and zip it up over them so they sat on my stomach.
Most annoying accessory ever. Trust.
Anyhow, on to the rest of the nitty gritty...
What I wore:
Mostly zip up hoodies. As luck would have it, I’d kept a zip up long sleeved t-shirt from
years ago, and I layered that under a micro-fleece hoodie. If cold I’d wear another hoodie over top of that. Once my drains came out I was better able to sneak into a large t-shirt, as I could stretch the sleeve down to my navel and slide my arm into it. Otherwise it was yoga pants, panties and a front-closing bra (not pictured), and occasionally (with Mr Lannis’ help) the white leggings from surgery (I was cold, a lot, so I wore them if we were leaving the house). A pair of men’s socks were easier (and cozier) to wear, and if my feet got too hot I could drag them off with the opposite foot (better than asking for help).
Note: I don’t mention PJs. I’d wear the same clothes day and night, and change when Mr Lannis gave me a sponge bath (sounds kinkier than it was, trust) or when I was able to shower on my own—something that didn’t happen until
TEN DAYS POST OP! ::headdesk::
How I drank: through straws, and with light mugs. Someone had to get me water and juice—I was unable to press the fridge’s filtered water button with enough force to pour my own glass, let alone lift a full glass of water. Same for the jug of juice—too heavy (yes, clearly a running theme here).
How I ate: like a child, with everything cut for me. It was difficult to saw a knife with enough force to cut through anything. Humiliating.
For breakfast Mr Lannis left muffins and fruit on the kitchen counter because I couldn’t open the fridge to get myself food if I was hungry, and I was hungry
all the time. It wasn’t odd for me to snack in the middle of the night, my body craving energy. Thankfully there was a plastic clam shell on the muffins, because I wouldn’t’ve been able to fight off the cat. As it was she would steal my muffin papers every morning (no, seriously).
 |
| Little shit. |
How I slept: often. And on the recliner in the living room.
For six weeks.
At first it was because I didn’t want to roll on the drains, and the recliner forced me to sleep unmoving on my back, while also being easier to sit up and get into a stand (it was slow going, but easier than rolling on a bed). Then when the drains were removed I tried the bed, but laying flat on my back put too much tension on my chest—all the pulling drew tight and uncomfortable, not something that could be ignored and slept through. So until I had the go ahead from Dr M, I played it safe and stayed in the recliner.
And so there I slept, with a fitted sheet on the chair, two quilts, and occasionally trapped beneath a cat. If Moggie decided she was going to sleep on me, I couldn’t use my arms to move her. She’s stubborn, so she’ll remain despite me forcefully kicking my legs, effectively trapping me and not allowing me to go to the bathroom in the middle of the night (ugh). Moghedien was also known for stealing my spot and holding it hostage. Unfortunately I was neither able to give her the pets she wanted (her position was too far for me to lean and reach), nor was I able to pick her up off the chair (too heavy/too far to reach). It was lose-lose all around. I think...
 |
| Jerk. |
And I
think it was three weeks before I managed to make it through a day without a catnap. They started after every meal—forty-five minutes of knocked out bliss thanks to the warm buzz of food and meds—then slowly dwindled to a twenty minute catnap once a day. And yes, this would be in the living room, with the hurricane raucous that is two boys playing happening on the same floor. I slept through it because my body
needed to sleep through it.
How I kept track of meds: I’ve already mentioned my sticky note on the shelf next to the recliner, so I could keep track of what time/what meds (antibiotic, Tylenol, or Advil—painkillers staggered every two hours).
How I turned on the light for meds in the middle of the night: I didn’t. Floor lamps were too high when seated, and the twisting motion of the switch in my fingers would travel up my arm and clench my pec muscle painfully, and immediately after surgery wall switches were too high, too—I’d have the kids flip them for me. At night, I’d keep my cell phone on the table next to me... touching it would illuminate the screen, telling me the time (and thus whether it was time for medication), and giving me enough light to see the pills prepared in a small dish within easy reach.
Eventually I had enough strength that I could grab the floor lamp next to the recliner and tilt it so the switch was within my reach. Yes,
everything was a process.
How I bathed: Until my drains came out and I was allowed to get wet, Mr Lannis was on sponge bath duty. This is not as glamorous as it sounds. Trust.
How I washed my hair: it didn’t happen at home until the drains were out and I was allowed to get wet. Arguably, I could have leaned over the kitchen sink and had Mr Lannis do it, but he was scared of hurting me by accident, and let's face it, that scared me, too.
My local salon was great, though the first time it took three people helping to lean me back in the wash station’s chair—it’s surprising what makes your muscles clench on you. That first visit I almost fell asleep, lulled by the rhythmic scrubbing of my wonderful hairdresser’s fingers—oh so soothing! and my scalp had been itching like crazy (probably because I couldn’t lift a hand to scratch and had been using a fork to find relief. No, really).
How I brushed my hair: I didn’t. Mr Lannis did. Thankfully we don’t have girls, because Mr Lannis tragically failed a crash course in ponytail making. He failed to the point that the home care nurses assumed I’d slept in my weirdo-schizophrenic-topnot for days between their visits. (No, it just looked that way. It was only an hour old. But thank you for graciously offering and redoing my ponytail, Joanne.)
He gets points for effort, though.
How I felt physically: Post-surgery I was sore. Tight, strained, and uncomfortable, but not in pain, per se... If I kept from moving I was still sore, but it was far from unbearable (says the woman who had no pain meds during childbirth—I’m not asking for a medal, I’m just saying I’ve felt worse. Mind you, for sheer duration, childbirth was more comfortable (intense pain, then it was over), the first three days I had only my doctor’s say so that the agony of my pecs was to end within the first 72 hours, and as each hour crept into the next without relief, saying I’d begun to have my doubts is an understatement (I thought she’d been blatantly lied to me). It felt as if I’d pulled my chest muscles to a horrendous degree one day, and then went out and did the exact same thing the next.
Not cool.
How I felt mentally: At first I didn’t think much at all—drugged stupors are good for something, heh. Then I felt frustrated. Helpless.
The worst was once I was off the pain meds, feeling energized and ready to get back to normal, but still under physical restrictions (no raising arms, no heavy lifting/pulling/clenching of pecs). I’d have no built-in reminder, and get carried away doing something (like, erm, pulling open a heavy commercial glass door for instance—eff you, McDonalds, you've given me
plenty of reasons to hate you) and be left with a sore chest for a day and a half...
The most I could do was spin things positively in my own mind, and remind myself it wasn't forever:
 |
| Christmas Day, four days post-op, chicken winging it. |
A fork was my best friend or worst enemy. I ate at the recliner with a board across the arms of the chair to create a makeshift desk/table. I had a designate fork set aside as the Scratching Fork... I used it to reach itchy spots on my head, shoulders, and back, and it also doubled as a great-hair-tucker-behind-ears-thingy, since I wasn’t allowed to stretch my arms up or out (that fork was bliss, let me tell you.)
But if I accidentally
dropped a fork, I’d have to ask someone to move my plate, move the board, then struggle to get out of the chair without using my abs, chest, or arms, then pick up the fork (watch out blood pressure!), and grab a new one from the drawer (if I’d been eating with it)... or ask (and wait) for someone to do it all for me, and feel like a spoiled brat because I needed to bother someone with something so trivial.
The weight of the entire day could revolve around whether I’d dropped a fork... (sigh).
Each day that passed had me more and more excited for the tiny triumphs.
 |
| Four days post-op. IIRC, I was reprimanded strongly for opening the heavy fridge door. |
|
My ability to fend for myself grew slowly day by day. The first week Mr Lannis had to do pretty much everything for me—I couldn’t pull my zip up hoodie on without his help.
By the end of the second week I was less helpless. I could move the laptop and board
myself, but mostly I used my cell phone
for accessing the Internet (it was easier overall). Mr Lannis went back to work and the kidlets and I ate microwavable dinners and pancakes. They loved it, I didn’t. We survived.
By the end of the third week I had more ability. I still couldn’t raise my arms, but I could more easily feed us, and carefully fold laundry. The kidlets were back to school and the drop off and pick up routine was being shared by Mr Lannis and a friend of mine. But I napped, a lot.
At the four week mark I was allowed to drive, but it was less about the ease of me using my arms and far more about my ability to withstand an impact. I had difficulty steering hand over hand and since I couldn’t lift the bag of cat food anyway, well, I got out of the groceries and store runs despite the newly-reinstated wheels.
It wasn’t until week five that I started breaking Dr M’s rules—I (slowly) swept the kitchen while the kids were at school. If I didn’t my eyes would bleed from staring at it. I had fewer and fewer physical reminders of my own recovery (the naps evaporated, I was no longer on painkillers), and was becoming frustrated with my restrictions. Of course, then I’d do something dumb and be sore for a day and remember
why I wasn’t supposed to do that, my pecs an aching reminder of my stupidity.
And this nitty gritty post about life immediately post-op would not be complete without my favourite anecdote of that first week, so we're backtracking a touch (because I can).
One day—day seven post-op, to be precise—our oldest son became ill and we had to sneak him in to see our doctor. (Turns out he had strep throat—caught early and he was fine. Barely a blip on his radar, but I knew something was up by his pink pink cheeks, and knowing I was vulnerable, erred on the side of early consult.)
Anyhow. Poor Mr Lannis was torn—leave his helpless invalid wife home alone? Or take us (youngest and I) with him? I was still napping lots at that point—and who knew how long he’d be sitting in a germy doctor’s office waiting to be squeezed in. Not a great idea.
I insisted he go, and that I’d eat an easily-reached muffin and have a nap. No worries—our youngest was used to making his own
sandwich bread-and-jam thingy (it's an insult to the word "sandwich"), and he'd be fine.
We'd be fine.
Mr Lannis waffled until the five-year-old spoke up. “It’s okay, Dad. I’ll look after Mom.”
Oh great, a volunteer!
So. Off Mr Lannis takes the sick boy (or rather: the boy who didn’t realize he was sick yet, heh), and leaves me home with the five-year-old.
And a headache.
A nagging, throbbing,
what-the-hell-I’m-on-two-different-painkillers-and-drinking-a-lake’s-worth-of-fluid-daily mystery headache.
Mystery, that is, until it’s med time and I assess what’s allotted: I’d run out of
Tylenol 3s (with codeine) the day before, and was now on to
Extra Strength Tylenol. There seemed to be no difference in pain management, but there was certainly a difference in one thing: Tylenol 3s have caffeine in them.
Extra Strength Tylenol, however, does not. And I hadn’t had tea since the day before surgery (amazing feat, yes).
Caffeine headache, ahoy!
Well, that’s easy enough, right? Get a pot of tea brewing! Problem solved!
Erm...
My five-year-old was in the room. “Mom, you look funny.”
“Mom just needs some tea.” The boys were used to watching me consume copious amounts of tea. He nodded.
Um. Except... I couldn’t lift the electric kettle out of the cupboard (too heavy empty, let alone full), and even if I could, I didn’t have the reach necessary to plug it into the wall on the counter.
So move it somewhere else, right? Maybe get my kid to do it?
Yeah, but... the tea canister sat too far back on the counter to reach. So did the canister of sweetener (for once the tea is brewed)... hm. Even the teapot, once the water was boiled, would be too heavy to lift.
Hell... the mug
with tea in it was too heavy to lift off the counter (eventually I was good with Tina’s stainless self-stirring-mug, but for the first few days of that second week it was Mr Lannis prepping my tea and I made do with leaving the mug on the side table and sipping from the stainless steel straw).
So, there I was, standing in the kitchen, attempting to assess the situation as my brain was gradually pounding harder and harder, and the process of two thoughts together was becoming, well, a process...
Panic set in: Who
knew when Mr Lannis would be back from the doctor’s office?! What if he was gone
for hours?! By then
I'd die (okay, maybe not) my brain
would explode! (more likely.)
This was an emergency!
AND WHO LEAVES A FIVE-YEAR-OLD IN CHARGE?!
Wait—
Completely by chance Mr Lannis and I had had a conversation a few days earlier about an errant can of regular Pepsi that had taken up residence in the back of the fridge for the last six months... neither of us drinks regular Pepsi. It was a remnant from having company over.
Ding, ding!
I CAN OPEN A CAN OF POP!
But wait... I couldn’t heave open the fridge to save my life (at this point the pounding in my brain meant this was not hyperbole).
The kid! I could get
him to open the fridge!
“Hey hon, can I have some help, please?”
Dutifully, my son dragged a chair over to the fridge, stood on it, and opened the fridge. In the back I could see the gleaming
treasure can of Pepsi on its side...
But I couldn’t reach it. No, my kid had to reach into the fridge
for me because apparently he’d been left in charge for a
reason. (She said, sulking.)
He handed it to me, and I cracked that bad boy open and drank a quarter of it in one go. The incessant pounding in my head began to dissipate within minutes, and I was able to think clearly again. (Or as clearly as usual, heh.)
After he dragged the chair back to the table, I found my son watching me with wary eyes. “Mom, you’re really hard to look after. I hope there’s no true emergencies.”
The truth was, if it had been a
true emergency, the five-year-old was the only one who would have been able to reach the phone, as Mr Lannis had left the cell phone on the charger and
out of my reach... ha!
It was simultaneously the most hilarious and enlightening moment of my recovery.
You see,
this is what I couldn’t find on the Internet.
Yes, the surgeons and websites and whatnot say “you won’t be able to use your arms,” or “you will have physical restrictions,” but there was nothing that highlighted the extent of support necessary.
If you go for a prophylactic double mastectomy you will barely be able to lift a can of pop the first day or two. You will hurt, and
you cannot function without someone to help you.
Sure, a lot of it will be hanging out and chatting (when you're not napping), and you're going to feel like you've asked this person to be your babysitter and it's completely foolish to have them hang out with you
in case you drop a fork, but guess what?
You'll need a babysitter, sweet cheeks.
This isn’t like when you call in sick from work with the flu and can lay comatose on the couch until you feel better. You will not be able to push the microwave’s door latch with enough force to open it
to nuke your own food.
I’m not talking about big meals, here. A
microwave defeated me. A
fridge door defeated me.
You cannot drive, you cannot prep your own food, you cannot bathe, or lift groceries, or push a shopping cart, or open a jar, or do laundry, or sweep, or vacuum (for six weeks!)... the list is almost endless.
You
must have a support system.
Gradually the list will shorten. Some items must remain on there longer than others (eventually I was able to get myself my own food from the fridge, and aside from a little help with sleeves I was able to gingerly dress myself from the start, but I couldn’t vacuum or lift a bag of groceries for the entire six weeks).
You’ll feel guilty, and beholden, and helpless, and irritated, and grateful, and appreciative, and bitchy, and petty, and angry, and spoiled, and like the entire world is taking their physical abilities for granted.
It sucks. But it’s finite.
You know what’s not?
Death by breast cancer.
That’s forever.
[Note: The next installment in this series can be found here.]
