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15 Realities at Eight Years Post-Cancer Diagnosis

15 Realities at Eight Years Post-Cancer Diagnosis

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…

Read my list and then share a few of your realities, 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 in 2018, 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?

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 I really want YOU to share some of your realities. (Otherwise I’m gonna look bad.)

Ready, set, go…

If you want to read more articles like this one, Click Here

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!

 

15 Realities at Eight Years Post-Cancer Diagnosis

 

36 thoughts on “15 Realities at Eight Years Post-Cancer Diagnosis

  1. I love this article! Having fallen into the “pretty lucky” category and NED for three years now, I still mourn my libido, have a vagina that is glued shut for the most part and a Franken-boob. Recently, I started volunteering to drive cancer patients to their appointments. This is a weekly reminder for me, and some of the people I drive are in a really bad way. Oddly, I feel like because I’ve been so lucky so far, I want to help those who aren’t. Some people want to know why I do this to myself and some think it’s awesome. And for each one of those patients that tells me they were cancer free but now it’s in their liver or lungs or wherever, I am reminded that this could be me too any day. I don’t think we ever rest easy. And I’m glad I can talk to these patients and relate. 🙂

    1. Gaye, I’m glad you loved this one. Thank you for saying that. It’s wonderful you provide those rides. What a generous thing to do. And much needed; I’m sure the patients are very grateful. Thank you for sharing. Appreciate it.

      1. I do agree with your 15 realities although I haven’t had breast cancer, I was diagnosed 1 ur ago with a “fibromixoid sarcoma” I’m 44yr old female. it has since been removed, but I have 3 monthly CT,PET & MRI scans.I’ve not been able to find anybody else who has had this type of sarcoma.I joined the cancer council here to find people with similar diagnosis to be told I’d be better off joining the “rare cancers” still I couldn’t find anybody or get a response.I said to my partner many times I don’t know how people cope through treatment etc etc coz I know I’ve nearly been driven round the twist in this past 12months & have only had the lump removed & umpteen scans but it’s like people think its all over with & gone, if only it was that easy..I wish you all well

        1. Kim, I hope you find someone to connect with, but regardless, you are welcome here. And yes, if only it was that easy. I wish you well, too. Thank you for sharing.

  2. I am struggling with anxiety and depression been off antiestrogens for 1 month. Today will see the doctor plan to get on them cause I feel the same on or off. Dr is suggesting ect for depression meds are not working.
    Has anyone taken ect for anxiety caused by the low estrogen and did it work. I would like to find some bc survivors sho actually took ect so I can understand if it actually helps the depression for those who are supposedly treatment resistant. Would that prevent me from thinking about suicide all the time and let me live my life. Please nancy can you ask your people about that. Anyone who took ect and if it helped. Not my life is very hard, people all tell me I have to think happy thoughts. Friends say listen to your doctors, my doctors say let us know what you want to do and we will cooperate with you. If you want to kill yourself go to the hospital, al least give us one chance.

    1. Kathy, I am sorry you are struggling, and I hope you are able to get the help you need and deserve. Hopefully your appointment went well. I don’t know anything about ECT treatment other than what I just googled. I’m not in a position to offer medical advice on that, or anything, for that matter. All I can and will say, is please seek help. If you are having suicidal thoughts, that is very serious and worrisome. Please be persistent in seeking help. My best to you.

  3. I’ve been ned 2 yrs but now an ultrasound has been ordered for a suspected cyst so i am thrust back into that cold hard fear that is a cancer diagnosis. So it may be back, even tho i deal with heavy menopause symptoms from aromasin everyday. So glad that sacrifice (dry vag/skin, weight, foggy brain, insomnia, crazy hot flashes,anxiety) might all be for naught. You are so right that it is never over; it is never really gone. Cancer haunts you.

    1. Beth, I’m sorry you are dealing with this new worry and all those other issues as well. Yep. It’s never really over. Good luck with your ultrasound and thank you for sharing.

  4. There is a huge difference between MBC IV NED and MBC IV active Mets.
    I was MBC IV NED for almost 4 years (7 clear PET scans – every 6 months). Bone and Brain Mets DC’s in Dec 2017 totally amplified the whole MBC IV experience. Death suddenly lurked in the near but unknown future. The repeating thought “OMG I have stage IV cancer” was replaced by “How long do I have?”. I constantly wonder if the bone and joint pain is the Mets or a side effect of the treatment (Letrozole/IBrance). When encouraged by well meaning friends that the treatment is or might be working I think to myself “Yes but this pain and tiredness is as good as it may ever be for me”. Is this how I want to spend the rest of my days? I find myself “over believing” research findings that are promising and “under believing” less optimistic reports.
    Sorry you have MBC IV NED – I wish I did.

    1. Cindy, Thank you for your candid comments. You’re right. There is a big difference between MBC NED and MBC with active mets. I hope whatever treatment you are on works for a very long time. My best to you.

  5. It’s been a yr and a half since my diagnosis of stage 3 lobular bc. I’m having a hard time finding anyone out there with this type of cancer so I’m feeling a bit alone in this. I’ve tried Tamoxifen and Arimidex several times but the side effects have caused me to stop at least for now. So, I’m dealing with the uncertainty of it coming back. Most people I talk to that have not gone through this tell me I should be happy it’s all over. If I tell them cancer is never really over they tell me to be happy I’m alive. Well, of course i am…but… So I’m very selective about who I talk to about it. Most people don’t get it. I don’t dwell on the possibility of a recurrence, but I’m realistic about it. I don’t want any more surprised so I hope for the best and prepare for the worst. I wish that every ache and pain didn’t make me think “cancer”. Anybody out there with lobular?

    1. Hey Donna,
      I’ve got lobular stage 1 grade 2, wee bit over a half inch and am 2 years out from the lumpectomy.
      Had 7 weeks radiation (whole left breast), and have done my time with anastrozole
      and now letrozole for 20 months.
      Hate, hate, hate the pills.
      Got severe carpal tunnel then surgery in one hand and have had a shot in each hand for de Quervains.
      The pain was debilitating, but I kept right on trying to “get my body used to the pill”. I am now suffering from de Quervains in my right hand….. again. I am still pushing hard to make it to 24 months on the pills and make a decision. I don’t want to go near tamoxifen and I have little hope for aromasin to do me any better. But it is still a constant inner struggle in my head on stopping the pill or suffering through more and more pains.
      Then there is the loud grinding, crunching of bones I hear when I move
      My DEXA scan is coming up in a month,…. might be enlightening……….
      Then there is the evernagging worry, some days are better than others
      Today is not a better day, it is one of my bitter days
      I’m allowed, once in a while, gawddammit!
      Day after tomorrow, I get my post 2 year/annual/boobathon.
      My boobs are very dense, and I had invasive lobular carcinoma, two risk factors for having difficulty seeing things on a mammogram, so I also get to endure an ultrasound…………..my boob still hurts from the last one……it is still tender, hot and lumpy, two years later
      At my recent visit with my oncologist (whom I do not like)
      he mentioned because I had lobular, next year I should have an MRI instead……………
      heavy sigh…………………
      you see most women get ductal carcinoma and lobular carcinoma is only seen in about 10 percent of all cases………
      So there are so many realities, I can’t seem to pick just a few
      1) I can’t really talk to anyone about all these realities, doctors are too busy making sure you are “cured” and don’t really want to hear about any side effects, friends can’t fathom the world you are thrust into, and you don’t want to worry your friends and family, they are over it why can’t I be “over it”.
      2) I feel guilty for bitching and whining, why can’t I just see how lucky I am?
      3) Oh, that’s right, I do feel lucky, and grateful to be alive and some days are better than others.
      4) Today is not one of them
      5) I can’t stand listening to myself bitching and whining sometimes, oh, yeah, I mentioned that already……….
      I am pretty sure everyone else can’t stand me either, sometimes….
      6) What was I saying?………………….Of all the things I’ve lost, I miss my mind the most………………
      7) Oh yeah, my eyesight is getting rapidly worse (oncologist asked about that, his response was hmmmm when I said yes, it was getting worse
      8) Joint pain anyone? Yes, oncologist asked that one as well. I launched into the tales of the hands and he asked if I had pain elsewhere. I said yes, yesterday my knee, the day before my left hip, my wrist, my ring finger, he interrupted and impatiently asked if it was getting worse….
      Really? Did I not spell it out? But he was actually looking at me for the first time in the visit, so I guess he truly did hear me bitching and whining………….and might have been truly concerned………..
      his response was ….hmmm….
      9) Did I mention I don’t like my oncologist…
      10) And the lady above who laments her glued vagina, oh my, I sure do too……:(:(:(
      and Frankenboob, LOL! I called mine that too! Especially during radiation……….that was not pretty……
      11) I still didn’t get the “gift”, guess I was naughty and didn’t deserve the “gift”
      but if someone else can see it that way and it makes them happier or more able to cope, than I applaud their ability to see it that way. Just don’t expect it from me……..never, ever, gonna happen…………
      11) My patience has declined, I have zero tolerance for bad behavior, I will walk out, watch me……and that darn oncologist…. there are only a few in my area and they are all in the same office………..I don’t want to feel guilty for wanting to try another oncologist………but breaking up is hard to do
      12) I worry about worrying my mother, I am so lucky to have her still, but she is 78 and I just can’t seem to tell her everything………., I don’t want to worry her…………..
      13) I do not like my “new” reality. But I take comfort in knowing I am not alone when I read others who feel the same. Thank you again, Nancy, for letting us all rant and compare notes.
      14) I am getting my mothers neck…………….I can’t lose weight, I stay up too late, I can’t sleep, my face is falling off (dry and flaky around my chin and mouth??), hands and fingers stiff, especially in the morning,
      oh, the right one is stiff at night now, my ring finger is sticking and snapping when I bend it down,
      I feel like I am 90 when I get up,
      I make those “getting up” and “sitting” down noises.
      ……………….oh hell, there I go again, bitchin and whinin…and moanin………….
      and I used to be sooo laid back!
      Believe me,………….. I miss ‘me” too!

      1. Tarzangela, I always appreciate your snarky comments. Your sense of humor is very much in tact! Thank you for sharing some realities and thank you for reaching out to Donna. Good luck at your checkup.

    2. Donna, I hope you noticed Tarzangela’s comment. I’m sorry you’re feeling alone. There is a lot of uncertainty, that’s for sure, and your diagnosis is still pretty recent. Day by day. Cliche, I know, but really it’s all you can do. It’s probably a good idea you’re selective about who you talk to about stuff. Hopefully you have one or two people you can open up to. It’s hard, I know. Have you tried one of the other AIs? Just a thought. Thank you for sharing.

      1. Thanks Nancy, yes I did read Tarzangela’s post. So good to know there’s someone out there in the same boat. I will reply to her. My oncologist says the two meds I’ve tried are the ones best suited for my type of cancer. Recently I tried Arimidex again , determined to be a good sport and give it at least 2 weeks. I got as far as 3 days before I was in tears and very depressed. So unfair that the meds we need to keep the cancer away make us feel like crap. Thank you for your help and insight.

    3. Hi Donna,

      I also have Lobular, stage 1 grade 2 multifocal . Lobular is not as common as ductal. I have been told it is a slow grower and very responsive to AI’s but as we all know everyone is different. I did manage to take Letrozole for 25 months before switching to Tamoxifen. I had severe side effects on the Letrozole. Not so bad on the Tamoxifen, managed three years on that. The doctors did want me to continue for a total of ten years but I simply could not do it due to the side effects. Some of my joints literally fused due to such horrible inflammation and I do believe in quality of life. The good news is I am 5 1/2 years out and doing well. It is always a worry and you are right people don’t get it at all. I wish you the very best.

  6. Here are my realities:
    1. My body will never be what it was. My scars are here to stay.
    2. Cancer clouds everything. I cannot get any medical attention for anything without cancer clouding it. This first thing they test for is if cancer has returned.
    3. I will never not worry about my health again.
    4. Positive things: I will always eat better and exercise.
    5. I’m relieved that I no longer have to update people on where I am in treatment.
    6. I am OCD about reading cancer blogs, articles. Not always a good thing.
    7. I am a Cancer Information Specialist, not by choice. People who are newly diagnosed asked me for information.

  7. I am 8 years post a very early colon cancer diagnosis that still needed surgery and 3 years post a very early breast cancer diagnosis that still ended in a mastectomy. My cardiologist told me I have ptsd as a result. He may be exaggerating but the truth is I am always wondering when a new cancer will show up. It can cause a lot of anxiety even though I know how “lucky” I have been. And then there are the estrogen blockers…I am supposed to be happy that they can help me but the truth is they make me feel old in way too many ways. Life will never be the same even though I am very grateful to still be here.

    1. Rita, I hear you. I’m sorry you have ptsd to deal with, too, though it’s very understandable why you do. Gratitude and a sense of loss certainly can and do co-exist. Thank you for sharing so candidly.

  8. I have a somewhat odd situation. I recently finished all my beast cancer treatments and I will have to wait 4 months for a re-check. Before cancer I had and still have chronic pain issues in my jaw and abdomen that are not cancerous, at least not yet. But people are under the impression that if I survived CANCER, then a little chronic pain in comparison should be easy to deal with. But they are so wrong! It’s just as hard and sometimes harder when major pain is involved. So now everything will be compared to my cancer and will seem less significant. That’s one of my new realities.

    1. Roberta, You make excellent points about that new reality. Just because you’ve had cancer, this does not mean your major pain issues, or anything else, should be downplayed. I’ve heard people in general talk about this too. They’re told things like, at least it’s not cancer. Talk about not feeling validated. Anyway, dealing with all that must be frustrating. Thank you for sharing about it. I’m sure there are others in the same boat.

  9. Nancy, thanks for getting the ball rolling on this one:

    Cancerland launched me into Early Menopauseland, denying me fertility at a relatively young age. However, the positive is, as you know, I adopted a wonderful baby from China, who is turning out to be a wonderful girl that I would never trade for a biological child.

    Physical and emotional scars: oh yeah. The physical ones are a reminder of the cancer crap, but even worse are the emotional ones. Cancer put me in the land of anxiety, depression, and PTSD. And I feel sometimes I have to be quiet about it, thanks to societal stigma. I have a psychiatrist (yes, I have psych meds) and a psychotherapist (whom I need to sort the cancer crap out). And I’ve been sorting it out for the past 15 years or so, and sometimes I don’t feel I’m getting any better.

    Cancer has shattered me. Of course, the positive side is: I’m also still here and I got to live, which makes me lucky thus far.

    1. Beth, I am proud of you for seeking help and for talking openly about your anxiety, depression and PTSD – and your cancer too, of course. You’ve been through a lot. And yes, the scars, there are many of many kinds. Keep on keepin’ on, right? Thank you for adding to this discussion, Beth.

  10. I am 16 months post diagnosis. 8 months post chemo/radiation, 6 months into anti estrogen. Thank you for this article, sometimes I wonder if I shouldn’t be feeling more normal. I wonder when I will get my full energy back.

    For the first time in my adult life, I feel my age, maybe older. (I will be 60 in August) I am trying to love my new self, but I miss the old me, still. Some days I don’t recognize myself physically or emotionally.

    I have the most amazing husband that loves me hard. But I know he misses the old me too.

    I know how fortunate and blessed I am. I am alive, I am cancer free, I am loved.

    1. Bev, Cancer ages a person, it just does. And in more ways than one. About that normal thing…everybody is different and everyone carries on in her/his own way – with or without that full energy back. Again, it’s fine to have feelings of gratitude and at the same time grieve for the old you. Thank you for reading and sharing.

  11. I so appreciate this post Nancy and all the comments left by fellow readers, especially as I near the 10th anniversary of my Stage I BC diagnosis. Chemo, mastectomies without reconstruction, prosthetics, 8 years on Tamoxifen–those are a few of my details. That’s the thing. We each have much in common as BC patients, but also our own, very unique, very personal version of life before, during, and after diagnosis. I too think of those with MBC, now including my sister Mary Jo, and maintain an effort to live gratefully–as I was doing years before cancer came along.
    I wasn’t all that confident and comfortable in my body, other than athletically, for the first three decades of my life. Marriage and motherhood brought me to a much better place. When cancer came along, I grieved the loss of my breasts, and I still do, but not in the ways or to the depths some of the women I know or read about do. I sometimes feel like the odd woman out, but then I return to the other things on your list–people think the cancer part of your story is done and they don’t bring it up, or they question how well you are handling it if you still need to talk about it. I don’t get that kind of response much, but getting it at all is sad. Cancer has been a defining experience in my life. I didn’t ask for it. It came.
    I am still here. That is the best place to finish this comment. Thank you!

    1. Lisa, It’s good to hear from you. I hope your sister is doing okay. You’re right, we all have much in common and we are also all so unique and handle every step of this cancer crap in our own way. As we do everything in life. Interesting you sometimes feel like the odd woman out. Then again, we probably all have felt like that too. Do you follow any bloggers who’ve opted out of reconstruction? There are also Facebook groups and such. There seems to be a lot more women becoming vocal about going flat and talking frankly about it. Flat and Fabulous is one that comes to mind. In some ways, cancer is defining. It becomes part of who you are and shelving it just isn’t realistic. I guess that’s one reason I keep blogging. I need an outlet that hopefully helps others too. I’m glad you’re still here, Lisa! Thank you for sharing your always valuable insights.

  12. Thank you Nancy! Before I found your blog I felt so alone and sometimes a bit crazy. I didn’t know anyone who had breast cancer and was finding information on stage 3 elusive. I don’t mind talking about my diagnosis and treatment, how else can we educate the public. The media does a wonderful job showing us how great we should feel during treatment. Don’t get me wrong, I hate my Fraken boob, my scars, my painfully joints, my lymphedema, the neuropathy in my hands and feet, my six month scans and everything else that comes after active treatment. This is my new normal as they like to say. And it sucks!

  13. Thanks for this article and the invitation for us to share. At 12 years out, I guess I have a few.
    1. I’ll probably never finish my reconstruction fully. Insurance and being done with surgeries are two reasons.
    2. My hair only grows in white now, and I don’t like to color it. I also don’t like it white.
    3. I doubt I’ll get back to a career-path job now, and that is probably/maybe a waste.
    4. OB/GYN issues can be a huge deal for pre-menopausal women who have/had bc; there aren’t many good answers there, either.

    1. Lopsided Blogger, It is so good to hear from you. Are you still blogging? Thank you for reading and for sharing four of your realities.

  14. 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

    1. 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.

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