15 realities at eight years post-cancer diagnosis.
Yep. It’s been eight years since the sh*t hit the fan. Eight years! So far, so good. Still here. Still NED. I am lucky in oh-so-many ways, and I know it. However, I am also not one to gloss over cancer crap, aka, cancer fallout. As you know by now, right?
And sometimes the reality of it all still hits me like a ton of bricks.
What about you?
In this post, I decided to share 15 realities I live with at eight years post diagnosis. There are many more, but I don’t want to bore you to death, and some will forever remain private. My list is totally random. And I made it late in the day, which probably wasn’t a good idea. Oh well.
And one more thing, believe me, I fully realize my friends with metastatic disease wouldn’t mind dealing with my realities, some of them anyway, if they could get rid of that one gigantic, ultimate looming reality they face.
Still, this doesn’t mean I cannot speak about my realities. You are entitled to speak about yours, too, if you want to.
The sh*t storm that is breast cancer is not a contest. So…
Here’s my list of 15 realities at eight years post-cancer diagnosis. Be sure to share a few of yours, if you want to. And I hope you do.
1. I’m here (yay!), but gosh, there is collateral damage and plenty of it.
I will spare you the collateral damage details in this post because this post is not about details. Let’s just say, it’s hard to come up with one area of my life not impacted by cancer crap fallout. And yes, I am grateful too. See #9.
2. Cancer is now part of my family’s medical history.
I mean, it’s part of it BIG time due to the whole BRCA+ deal. And this really sucks. For my entire family. Probably for generations to come.
3. Short-term life insurance is not achievable post diagnosis, well, not for me anyway.
Dear Hubby recently attempted to acquire a modest coverage policy for each of us. It was supposed to be a package deal, no questions asked, easy to get, we cover anybody sort of offer. Umm…turns out, not so. We sorta knew that would happen, I suppose. Oh well. Screw them. And health insurance, don’t get me started on that one.
4. Scars – the “silent loudspeakers”
Nothing says reality like scars. And all those memes and slogans about scars representing how strong you were to overcome whatever caused you to have them, not a fan. As far as I’m concerned, not enough attention is given to the emotional scars of breast cancer. Emotional scars of any sort, for that matter.
5. Nipple envy
Yeah, I have that. Big time. And hair envy. Ditto.
6. Many people, maybe even most, insist you should learn life lessons from cancer.
Why this is I do not know. Feels like one more way to frame cancer as a f***ing gift. It is NOT! Oh, and while you’re learning all those lessons, you are, of course, supposed to be smiling through it all. Because above all else, you must remain positive. Gag me.
7. Pretty much no one asks me about cancer anymore or even how I’m doing these days. Which is fine, btw.
I mention this because I think it means everyone assumes all that stuff is behind me now. Which really means forgotten. If only.
8. Sometimes I still do not recognize the person in the mirror looking back at me.
Yeah, so that forgetting part just isn’t possible anyway.
9. I am lucky in so many ways.
Supportive family. Wonderful spouse. Still NED. Still working. Wonderfully supportive online community. Loyal readers like YOU. Still on my own power, as Dear Hubby likes to remind me. I am grateful. Very grateful. But this does not mean I must keep quiet about the stuff I do not feel so lucky about. Neither do you.
10. Career change – without my consent
These days when asked what I do, I call myself a professional blogger (what do you think, how does that sound?), author, freelance writer and now land owner, but first and foremost, I still think of myself as an educator. I probably always will.
11. Oh, and reality check, when someone asks me what I write about, let the fidgeting begin. Generally, people do not know how to react.
The subject cannot get changed fast enough for most. I kid you not. I mean, cancer and grief…heavvvy…I get it. But still. Why is it that the topics of cancer and grief still make people so uncomfortable to talk about?
Unless, of course, you’re talking about those great life lessons you’ve learned from either. People seem to love that shit.
12. It’s now been eight years since I stood in front of a classroom and this makes me kinda sad.
Okay, not every day, but some days it still does.
13. Sometimes I feel like I’m not doing a very good job with this whole survivorship thing.
See #6. Heck, see all the above.
14. Those little white pills cause me and many of you, my Dear Readers, considerable angst.
Damned if we do. Damned if we don’t, right?
You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.
15. I’m still here.
Circling back to #1 and what matters most. I’m still here. Many are not so fortunate; there are so many losses. I think about that every single day – the biggest reality of all.
I guess these fifteen realities will do for now.
Now, share about a few of YOUR post-cancer diagnosis realities, if you want to. (Again, I hope you do.)
Ready, set, go…
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What are a couple of your realities – good or bad?
If you’re a caregiver, or ever have been, let’s hear yours too.
What is your most challenging reality today, right now, this minute?
If you like this post, please share it. Thank you!
Donna
Friday 31st of May 2019
I am so grateful for your blog, Nancy. Thanks for your honesty and vulnerability. It’s a little over a year since I found The Lump. I had surgery August 22, 2018 and then 16 radiation treatments in November, the gift that keeps on giving. When I went for my six month post surgery exam, the surgeon pressed really hard on my breast and within days I had a seroma, a lump of fluid where the other lump was. I’ve since had a mammogram and ultrasound on it. An RMT who specializes in Lymphedema has helped me understand it and yesterday I bought a SwellSpots edema pad that looks like an elephant ear that’s supposed to help. My poor nipple though - the fabric is quite harsh. My cancer was Triple Negative, so no hormonal treatment for me. The oncologist said it’s not a matter of ‘if;’ It’s ‘when’ it comes back somewhere in my body. I’m trying to lose weight because I took my food-foot off the brakes after my diagnosis and said ‘screw it; I’m eating what I want.” Twenty pounds later.... I’m 72, live alone in a beautiful place, have pool buddies that are a good support (I go to the pool 3/week.) My life is OK. I’m NED - no evidence of disease. I don’t have it so bad - but the sword of cancer is always hovering. Thank you all for trusting me with your stories. Hugs...
Nancy
Friday 31st of May 2019
Donna, Thank you for your very kind words. I'm grateful for all my Dear Readers, including you! You're so right about that sword...I'm glad you have good support and that you are presently NED. Hope that continues for a very long time. And yes, the gift that keeps on giving. Isn't that the truth? I appreciate you sharing, Donna, and again, thank you for your kind words. Onward, right?
LaVonne Simmonds
Wednesday 29th of May 2019
What is NED please?
I am 3 years out of Her2+, chemo and radiation, all finished Dec 31 2016. Dealing with locking fingers, constant pain in hands, etc and etc. Glad to be here but as someone said earlier, one is never at ease after cancer, even though doctor says I am cured.
Truly appreciate the feeling of validation after reading all responses. Thank you.
Nancy
Friday 31st of May 2019
LaVonne, NED stand for no evidence of disease. It's a more accurate description than saying someone is cured because as we all know, being cured is sort of a myth in Breast Cancer Land. A stage IV person can be NED too. See Lisa's comment.
Joanne
Wednesday 29th of May 2019
I finished treatment 4 years ago and still struggle with the new norm. I feel like a different person and can't seem to find it in me to accept this new person I see in the mirror every morning, perhaps because she doesn't measure up anymore. I struggle these days with arthritis that I did not have before treatment; hips and back. I was a fit, energetic woman before treatment and just have a difficult time with my limitations now. I have adapted to and tolerate the daily pain, which is a pretty shitty way to live, mostly because I don't want to complain because I'm supposed to be grateful I'm still here, right? Don't get me wrong, I am grateful but like most of you do not consider this gift and it has not made my life better. I call complete bull*!@# on that. So now what do I do?
Nancy
Friday 31st of May 2019
Joanne, Thank you for sharing so candidly. I'm sorry you struggle with the issues you mentioned. First of all, speaking your truths is not complaining. You can talk about your losses, long-term side effects and daily struggles and at the same time, be very grateful. So cut yourself some slack and do it often! So, what to do? Move forward as best you can, day by day. Seek out support - people/forums that allow you to speak freely. Journal. Exercise. Live your best life, whatever that means for you. And be sure to discuss your pain issues (and any others) with your medical team. Don't ever suffer in silence. Thanks again for sharing.
Terri
Wednesday 16th of January 2019
Just joined. Reading your blog is therapeutic. All of the positive blogs and other people's expectations of me are unrealistic 100% of the time. It's fabulous to know it's okay to grieve the losses. Loss of health, loss of people who helped me along the way, and the biggest loss...feeling in control. I am happy, I am truly blessed, and some days I am truly at war with my own feelings. Thank you for saying it is okay. My diagnosis was just the start, 5.5 years later I have had a mastectomy, reconstruction, supracervical hysterectomy, oophorectomy, parathyroidectomy, and 5 looong years of Tamoxifen which ended on Thanksgiving day 2018. Now I am lost. It's time to move forward. There isn't much left of my original parts that are optional. Thank you for your realistic view and approach to what's next. It won't be a marathon. I hate running.
Nancy
Thursday 17th of January 2019
Terri, Welcome. It's always my goal to keep it real. Otherwise, what's the point? Thank you for reading and taking time to share your thoughts too.
Janet
Wednesday 30th of May 2018
I am 9 months out from diagnosis, 4 months post chemo, two months post mastectomy and just started radiation. During chemo I had a mountain of side effects; the usual, metal mouth, I’m bald, had nausea, vomiting and rampant diarrhea (spent a week in the hospital after first treatment). Additionally I had major colitis, a blood clot (left leg still 3 inches wider than the right), neuropathy of the hands and feet, my tear ducts swelled closed, my fingernails turned back and fell out, plus myriad of smaller issues. I still have three issues remaining after 4 months, chemo brain, neuropathy, and edema in my leg. Not trying to complain, but can anyone tell me if they had these three issues and if the get better or go away? Thanks
Mimster
Thursday 30th of May 2019
Yes, I had all those things but my fingernails did not fall out. They all eventually subside except maybe the fatigue. The metal mouth was a tough symptom as it cut into me having a cup of coffee and relaxing. You learn patience from this disease otherwise you go a bit crazy.
Nancy
Thursday 31st of May 2018
Janet, I am sorry you had so many nasty side effects from chemo. You haven't been done for that long, so things should continue to improve. I would be sure to have your leg looked at for potential lymphedema issues. The chemo brain might linger for a while and the neuropathy may or may not improve. If it's really bad, there are meds for it. Just be sure your doctors are helping you monitor and manage any and all issues. Do not suffer in silence. Good luck with radiation. May that go smoothly for you.