**While the primary goal of my cancer-related posts is to inform, not earn advertising fees, I do link to items on Amazon that I find useful or entertaining. Since I am part of the Amazon Associate Program, these links are considered affiliate links, which means that I can earn a small advertising fee from Amazon when readers use these links. There is no additional cost to you. For my full disclosure policy click here.**
September 15th is now an anniversary in our household.
It is the day that I “got my life back,” so to speak.
Not only was it the day that I had my last of 28 radiation treatments (after a bilateral mastectomy and 16 rounds of chemo), but it was also the day that we found out that Mr. Blue Eyes got a promotion and that we would be relocating. I could physically feel the relief as it felt like I was moving on with my life after breast cancer.
(I always get a lot of questions about my shirt. I bought it on Amazon…here is the link.)
At some point during my frequent cancer appointments, one of my nurses explained that she had heard most people say that it took them around a year for their energy to return after cancer treatment. In my mind, I heard her say that I would be back to my “old self” after one year.
But, in reality, she never said that.
In fact, there are many things that weren’t said to me about my first year as a cancer survivor. I’m sure it’s because everyone transitions differently so they didn’t want to impact my expectations of life after cancer, but there were definitely some things that I wish I had known a year ago. I am sharing those things with you so that you might be prepared for some of the same thoughts/emotions, either in your own life as a survivor or in the life of your loved one who has been fighting cancer.
Here are just a handful of things I wish someone had told me:
YOU WILL STILL FEEL TIRED AND BROKEN
Sometimes, in my busy day-to-day living as mom and wife, I forget the fact that my body was injected with POiSOn for five months. I get frustrated at how tired I feel sometimes and how little I still seem to get done in a day. (My new job is probably not helping much, but I know that cancer recovery is still a factor.) I have to remind myself to be patient with myself; there is damage that still needs to be repaired:
My gut is still not the same.
I have a couple of numb toes that might never regain sensation.
I still feel like an old woman when I try to exercise.
I am trying to give myself some grace, but there are definitely moments of frustration when I just want my old, unpoisoned body back.
On top of that, there are the joys of menopause. I mean, yeah….you hear about how menopause isn’t super awesome. Plus, you might have had a sneak peek if your ovaries were put to sleep during chemo. But nothing quite prepares you for the ups and downs of menopause. Hot flashes…..mood swings…..extra weight that won’t budge….and so on. Then, to pour salt on the wound, there is very little that can be done to ease the symptoms (considering most of the treatments involve hormones, which would be catnip for many cancers).
What is a survivor to do? Well, for me, I have decided to buckle down on my exercise and weight loss. I had previously been attempting to “go it alone” but that hasn’t gone over well. So I sought some additional help. (I will be talking more about this new direction soon!) I would just recommend finding something that works for you! Give yourself some grace but set some goals! There is something so soul-satisfying about working toward a goal. There is so much damage that has been done to your body that you can’t control…take charge of what you can!
YOU WILL STILL CRY WHEN YOU SEE YOURSELF NAKED
Since we’re speaking of longing for “old bodies”….
(Sorry if this section is TMI, but as a survivor it has helped me to hear that I’m not alone. This is my contribution.)
Luckily, I don’t cry in front of the mirror all that often; it’s normally when I’m in the aforementioned throes of menopausal mood swings. But in the past 365 days, I have been known to tear up a little bit when I am drying myself off after a shower. (And it’s been more than a few times.) Between my menopausal muffin top and my Frankenstein scars, I feel like I’m looking at a stranger’s body sometimes.
To my dear family members and close friends who might find this next paragraph awkward, just keep scrolling. For everyone else, I will say that the tears about my body have extended into the bedroom as well. I have been blessed with a compassionate and patient husband who still finds me attractive. But I will tell you that intimacy can still be difficult for me at times, even one year into survivorship.
What is a survivor to do? I recently attended a presentation from a life coach who talked about the fact that almost every emotion is preceded by a thought. In order to sidestep some of my post-shower tears, I needed to identify the thoughts that were sparking this emotional reaction.
From there, I tried to think of an affirmation that could replace each negative thought. I have written some of these affirmations on a post-it note that is stuck to my bathroom mirror.
It hasn’t totally cured my occasional bursts of emotion, but it has definitely helped. Give it a try! It certainly can’t hurt to tell yourself how beautiful you are!
(If you struggle to come up with your own affirmations, you can try this one (you can even buy it as a cool wall decal, although it looks to be a little large for a bathroom mirror. I might have to put this on a sticky note…)
YOU WILL STILL STRUGGLE WITH YOUR FEMININITY
There’s really not much more to say about this. Between weight gain, reconstructed breasts, and a lack of hormones, I still don’t feel very feminine. In fact, I have literally been called “sir” twice in the past month or so. And my hair is a very respectable length for a female!
What’s a survivor to do? Treat yourself! Find what makes you feel awesome and go for it! Whether it’s a spa day, hair accessory, or a new outfit, do something for YOU. When I was rocking super-short hair, I loved to wear big, awesome earrings!
My other tip is regarding hair growth (since that was one of my obstacles to feeling feminine): Treat each hair length like a style and not like a stage you’re trying to “get through.” This might mean trimming a little bit of the hair that you have worked so hard to regrow, but you’ll be grateful in the long run!
And one more tip: It might not help you feel more feminine, but consider going to the barber for your first few trims post-cancer. They are so much cheaper than the salon!
You could also ask your cancer center if they have made any arrangements with local hair salons for cancer patient discounts. My hometown has a beauty school that helps cancer patients for free as their hair grows back in.
YOU WILL STILL HAVE TOUGH CHOICES TO MAKE
As you probably remember, most of the difficult decision making took place before and during cancer treatment (see photo above).
Should I opt for a bilateral mastectomy?
Should I do genetic testing?
Should I have radiation?
Should I freeze some eggs?
Should I have my ovaries removed?
For me, these decisions (while horribly difficult) were made without much hesitation on my part. My goal from the very beginning was to be healthy for the three kids I have and the decisions I made felt like the right ones for me.
But as it turns out, non-life-altering decisions are a little more difficult for me to make. I am currently struggling with decisions regarding my reconstruction.
Do I have the plastic surgeon create nipples on my fake Frankenstein boobs or do I embrace what I have?
If I opt for nipples, will I move forward with tattooing?
Should I opt for just tattooing the nipples without having them physically created from skin?
I am finding these decisions to be very tough considering there is no medical reason for me to go under the knife again. I know there are many reasons why women move forward with nipple reconstruction and it could turn out to be a very beneficial step for me as well, but I was on the fence about it until just a day or two ago.
What’s a survivor to do? Reach out! There are still many professionals who would be happy to discuss things with you, even though you are “finished” with treatment. For my particular decision, I found it helpful to ask my plastic surgeon for before and after pictures of the nipple reconstructions he has performed; I talked to my oncologist about this surgery as well. Ultimately, my decision has been made (more on that soon). If you struggle with any post-cancer decisions, just remember that your cancer team still exists and wants to help you even if you aren’t seeing them very often anymore.
YOU WILL STILL WORRY
This was probably the hardest part of my first 365 days of survivorship. Of all the things I’ve already shared, this one is unique because no one needed to tell me that I would still worry about cancer. I just didn’t realize how MUCH a part of my life the worry about recurrence would actually be.
It really is an odd thing. I don’t spend my days huddled in the corner, worried about my cancer returning. Who has time for that?! Instead, the concern about recurrence will pop up at the weirdest times.
Here’s an example: I was recently making a quick drive to the grocery store (literally a three minute drive from my house). As I turned to look over my shoulder while backing out from my driveway, I thought to myself “Ouch, my rib cage is sore!” Simple enough, right?? Wrong! By the time I arrived at the store, my train of thought had derailed to the point that I was mentally drafting “Read this when…” letters to my kids in case I die. (You know the letters…”Read this when you graduate from high school”…”Read this on your wedding day”…etc.)
Long story short, in three minutes I went from “busy mom making a quick run to the store” to “anxious cancer survivor trying to regain her composure so she can go buy some bananas.”
I know this is morbid. And if you had asked me 365 days ago if this would be part of my somewhat-regular living, I would have laughed. I am a pretty reasonable person and I am also a woman of faith, but every once in a while the illogical anxiety of a cancer survivor can take over for a few minutes.
What’s a survivor to do? Speak up!
For me, vocalizing my anxieties helps my brain process them. It doesn’t take long for the realist in me to remind myself that, statistically speaking, I don’t need to worry about dying any time soon.
I mention my concerns to Mr. Blue Eyes, to my parents, and to my oncologist. They get it. Find your people who “get it” and speak up when you’re worried about something. There are support groups and therapists who are happy to help as well! Your head can be a scary place, so find a way to get out if it! 🙂
Another thing I have been tempted to do is write those “Open when….” letters anyway! Life is unexpected! I found these adorable books that would be a great way to compile these letters. And then maybe they won’t pop into my mind so often!
YOU WILL STILL BE A DIFFERENT PERSON
I haven’t gone back through and read my whole cancer story in its entirety, but I have skimmed a few posts here and there. As I have reflected on some of those posts, what I have noticed is that a switch flipped when I found out I had cancer.
My life goals changed.
My perspective changed.
My temperament even changed.
However, as I’ve read these old posts and reflected on where I was then versus where I am now, I have found that some of the “old Stephanie” has been able to emerge out from under “cancer patient Stephanie.” For the most part, that’s a good thing. 🙂
But, what is completely clear is that, even over a year past my diagnosis, I remain a different person because of cancer…in a GOOD way. It has been a pleasant surprise.
Yes, there are times when I get bogged down by aspects of day-to-day living (coughcoughpottytrainingcoughcough) and forget the drive to “make every moment count” that I had when I first got diagnosed.
BUT, I am still very slow to get ruffled by things.
There is so much that we worry about as a society that just really doesn’t matter in the grand scheme of things. Life is too short and fragile to be annoyed or worried by things that really don’t deserve a second thought. Maybe it’s something ridiculous that a troll posted on social media or maybe it’s fitted sheets…. (Haha! I need this for my laundry room.)
What’s a survivor to do? Enjoy the positive changes you’ve noticed in yourself! Embrace your new perspective on life. Don’t get bogged down by thoughts of recurrence! Enjoy your newly-prioritized life so that, no matter what happens, you will feel like you have given life the best version of you for as long as you are blessed to do so.
So there it is. Now you know what I wish people had told me one year ago.
I’m not back to my “old self” after 365 days as a cancer survivor. But I wouldn’t say that’s all bad.
Here’s to another year!
What do YOU wish someone had told you (or a loved one) about cancer survivorship? Let me know in the comments below!
Pin this post if you’d like to come back to it later! You can also (click here) to follow me on Pinterest so that you don’t miss any of my upcoming cancer-related posts.