Tuesday, March 16, 2010

Things I wish I'd known/realized before surgery...

Although hopefully, few (if any) of my audience will have to experience what I have, here's a list of things I've thought since my surgery. I really thought I was prepared because I'd seen mom go through hers (surgery & chemo). However, when its not you, there are SO many things you don't realize or fully understand. Here are some of mine.

1) The pain you imagine (even if you've seen if 1st hand for someone else) can be *much* worse in reality. The skill of your nurses *really* counts about above pain & its control.
2) The daily activities that you do without thinking suddenly become more like climbing Mt. Everest. I'm even talking about wiping your bottom after a poo, getting up from a chair/bed to go take that poo, to taking that poo, and even something simple like laughing at someone's joke. Love yourself and let others help you w/ even the smallest things if its too painful (or your doctor prohibits it).
3) The support you had before your surgery becomes even more important after surgery. Not only have your breasts been removed (and possibly replaced) causing physical pain/disturbance, your emotional state is in upheaval too. Its OK to be an emotional as well as a physical wreck. Its also not just your breast/chest area (even if you have implant/expanders or no reconstruction) that's affected by the stress of surgery - your whole body can ache. Its very important to utilize the support team you have available & if necessary ask for more. Don't be shy or proud! Just DO IT!
4) You lose *all* modesty around doctors - sometimes even shocking them w/ your lack there-of. Once one guy (or gal) has fiddled w/ your breasts to check for masses, you've had countless mammograms/ultrasounds/biopsies, etc - what's the point? Sometimes (especially me I think) you even lose that internal edit about TMI cancer-related (sort-of) things around regular people too. I mean, geez, to you its all out in the open (so-to-speak) anyway!
5) Becoming a member of this sister-hood (breast cancer - or really any cancer) enables you to share things you probably wouldn't share with your *real* sister (unless she's a member too). Plus your real sister (w/ same explanation) probably wouldn't understand fully. We've all been-there-done-that (even pre-vivors), so although we understand, it doesn't become real to someone else until it happens to them. No amount of explanation will really make these people understand no matter how sincere they are.
6) Everyone's experience is different. Although it doesn't necessarily hurt to read other people's stories, look at their photos, hear what their doctors tell them, it does *not* pertain to your cancer, surgery, treatment, feelings, etc. You are your own individual w/ similarities, but differences all the same.
7) When someone says these new breasts on their chest feel like rocks, etc - they're not joking! Sometimes you can actually feel a cold or hot beverage/food go down what feels like 'through' them (even w/ expanders).
8) Even though you hear stories of nipple sparing nipples falling off, etc - when they're yours its much more traumatic. Its even worse when you don't have a doctor with great bed-side manner.

I'm sure there are probably more that I have in the back of my mind and/or will think of later, but these are the biggies for me...

I sincerely hope none of you out there have to realize any of these things! Good luck & God bless!


  1. Anonymous3/16/2010

    Erika, I TOTALLY agree with everything you've said and would like to add a couple more:

    When you are in pain, in recovery mode or just plain depressed about your situation, the days seem endless. You wake up as late as possible (IF you're able to sleep) just to pray for it to get dark enough to 'gracefully' justify going to bed again.

    Well-meaning folks - even those who love you - will compare some of their life experiences to yours and think that there is a comparison...there isn't. Believe me when I say that unless you are a member of the 'club' you have not experienced anything like this!

    The bottom line is this...to survive cancer we need your love and support. We have to try to maintain our sanity but sometimes we feel a bit insane. Sometimes when we seem so strong we are really faking it or tuning out or both. This is a coping mechanism. Please understand that a smile or a laugh from us doesn't mean we aren't having a really rough time, it just means that the alternative would be much worse...

  2. I hear you, Erika! And if you're like me....you've found a strength within you that you never imagined would be there.
    You really are doing great...even with rock hard foobs!!!

  3. Hi, I found your blog just by searching on the internet... I am due to have a bilateral mastectomy 3/30/10 - I am so scared but I know I have to do this. Get ahold of me my blog is www.byebyehooters.blogspot.com


My Chemo-Jane hair-style

My Chemo-Jane hair-style
I just had to have my mom buzz my hair because it was falling out so badly.

Pre-op wearing my hand-crocheted cap with my prayer shawl.

Pre-op wearing my hand-crocheted cap with my prayer shawl.
My loving husband is watching me distract myself with a game on his iPhone.

2 days after my BMX w/ 100ccs in the TEs

2 days after my BMX w/ 100ccs in the TEs
I even have a fashionable belt to hold up my drains.

3 weeks post-op w/ 400ccs in each TE

3 weeks post-op w/ 400ccs in each TE
The smile is fake because the TEs were irritating!