Ovarian Rhapsody
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Silly Things People Say to Me When I Tell Them I’ve Finished Chemo

tuenight judgy margit ovarian rhapsody
tuenight judgy margit ovarian rhapsody

(Photo: Maya Gardner/TueNight)

This piece was originally published on August 2, 2016. 

Yes, I’m done. Finito.

I finished chemotherapy almost three months ago and have moved on to what my doctor dubs “Survivorship.” Great.

I mean, no, it’s awesome. It’s incredible. Yay.

Ok, I am not exactly ecstatic.

“But you’re DONE, OMG, you must feel amazing!”

To which I find myself essentially wanting to say firmly:

“Ahem. Shut. It?”

You have no idea. Done ain’t done. As I’m learning, it’s a process.

That last infusion on May 2 was a bitch. It took the first three weeks just to pull myself out of the brain and pain fog, to get my appetite back, to have normal poops, to be able to walk up my two flights of stairs in less than 20 minutes. And there are a few residual goodies mostly to do with my left leg (toe, neuropathy, chronic vein issues and – brand new! – plantar fasciitis).

So there are (literal) hills to climb. Yet, people still want to tell you how to feel.

They mean well. They want you to be back to you. But the pressure to get back to normal — often self-induced pressure after hearing these cheery comments — can be stressful. Most people are supportive, but there are a few comments that truly get my goat. I’m sure I myself have said similar things to people who have gone though a serious illness…but now I know better.

So without further ado, here is a sampling and paraphrasing of some of the silly things that people have said to me since chemo ended — and, what I would like to say in response:

You’re not done feeling bad yet? I thought you’d be better by now!

Nope.

How much longer until you’re back to you?

They say six months to a year.

A year?! Can you work out more? Take a relaxing spa day? Eat more kale?

Er, no. I just have to be patient. And so do you.

You seem fine?

That’s because we’re standing still talking. Now let’s try walking and talking for a few minutes and huff, puff, puff. I usually have to choose one or the other since my cardiovascular abilities have been “deconditioned.” So, don’t assume. You make an ass out of… oh, you know.

Can we go out and have a few drinks — it’s totally fine!

It is not totally fine unless you want to see me hurl in your lap.

My cousin Loretta had cancer, and she went shopping and went running during cancer. Why can’t you do those things yet?

Cousin Loretta and her super human ways officially haunt me. I envision a woman bald and Spandex-ed, running up a hill as she takes a few minutes to politely puke into her cupped hands and then Purell the hell out of them before she casually pops into H&M to eye a delightful new pair of shades.

Loretta, I shake my fist at you.

I ask you: Did Loretta have a blood clot? Did she have her ovaries removed, throwing her into menopause? What kind of cancer did she have and what stage? Which of the 200 cancer drugs, which all have varying side effects, was she on? What level dose of those drugs did she have? Did she have chemotherapy weekly?

People lump cancer into a one-size-fits-all thing. It’s not.

Is it totally gone, this cancer? Is it going to come back?

I don’t effing know and thank you for reminding me. They’ve told me there is a 15 percent chance of it returning in some nearby locale like my abdomen, so, of course, every time I have a little stomach pang, I’m tracking it in my iPhone. But don’t worry — I can worry enough for the both of us.

You should be taking vitamins.

My doctor told me that vitamins are a crock and to eat real foods to get real nutrients. Her nurse, however, told me Vitamin D and B6 were important to take. Dr. Oz wants me to take IP-6, Selenium, Black Raspberry, Vitamin D. My acupuncturist wants me to take a magical mix of chinese herbs. I think I’ll have a hamburger.

You should be eating baking soda every day. Look it up on Google.

Okay….

You shouldn’t eat that.

Said by a woman I just met who pointed to a platter of gross deli meat wraps, which I wasn’t going to eat anyway.

So how did this blood clot happen?

“Well it started with a swollen leg and it was late on a Thursday night and…” And I’ve entirely lost my audience. While I’m interested in the details, you aren’t.

Maybe a really intense spinning class would help your blood clot.

Actually, no, it really won’t. I found out recently, however, that the blood clot is gone. Hooray? Even though the doctors determined it gone after the requisite six months of twice daily blood thinners, it turns out having a clot can permanently damage your “valves” and create blockages resulting in Chronic Venous Insufficiency. Fuggggh. So I’ve been prescribed delightfully chic (NOT) tan compression hose because my leg swells up on a daily basis. While I write this, I have to keep my legs elevated and get up every 20 minutes. The thing about cancer treatment is that your oncologist is mainly focusing on killing those cancer cells. Oh, we’ve given you a possibly permanent vein issues in the process? You’ve lost an eye? Oh well! We cured your cancer!

Can I feel your head?

My follicles seem to be the subject of more scrutiny than just about anything else. As my hair starts to grow back, it’s white, soft and a little furry — not unlike the white Westie terriers I had as a kid.

When I was bald, it was obvious something was “wrong.” But as my hair starts to grow back, I get different kinds of stares — not the “aww, Cancer” head tilt and sad/smile, but a “Who does she think she is cutting that hair so short?” or a quizzical “What is her deal?” kind of look. Or…

Hey, Amber Rose!

A dude shouted from a car window. Or, when I’m lucky…

Cool hair!

A woman said this to me as she passed me in a coffee shop. That one I like. My hair is different enough that people feel the need to comment — good and bad.

You must be so much happier.

Sure, most days I am happy I don’t have a needle of drugs in my arm, but I’ve been told by the NYU social worker that the post-chemo emotional toll will be the hardest yet, not dissimilar to PTSD. I’ve been so focused on a regimen for the last six months that having your doctor and support team say, “Welp, that’s it! Keep an eye on a few places where the cancer could return, and we’ll talk to you in three months” can be a bit unsettling to say the least. But I’m doing ok.

Welcome to the “New Normal”!

Yeah I kinda liked the old normal a whole lot.

 Margit, why aren’t you better yet? (Asks Margit)

There is also myself. And the Silly Things I Say — or Demand — of Myself. Those are perhaps the worst. Your brain imagines and wants want one thing, and your body says nope, no way and literally shuts down when you can’t go any further. Useful and frustrating.

I am still learning how to navigate my stores of energy and pain. This past weekend, it took me hours to figure out how to get to a wedding in Connecticut with the least amount of stress and pain. I finally opted for a combo of train and my valiant husband driving, but even that resulted in a swollen, painful leg. Once at the exquisitely beautiful country wedding, I temporarily forgot about everything, got swept up in the love and walked up a hill to the wedding in the 90 degree heat…

We interrupt with a smart question: Should you really be walking up this hill? (Asks husband)

Um, probably not. I think I can dance until midnight. Ha. Try one semi-boogie with the husband and then on to the first school bus shuttle back to the hotel to pass out. Taking things slowly is not my strong suit, but it’s a valuable lesson I’m learning for myself.

Maybe it’s a good idea to eat more kale?

Here’s some advice: Don’t try to coach, don’t try to force your positive energy on cancer survivors/chemotherapy patients. Let them set the tone. You don’t know what they’re going through, you don’t know what they feel, you don’t know how they should feel or what they should eat or how much they should be walking or any of that. And they already have scores of doctors telling them what to do and have been through every possible online comment you can imagine. Just ask how they’re doing and listen. That’s the very best thing you can do.

 

24 Comments

  1. Valerie says

    I love hearing YOU in your writing! Thanks for the update. And for the record, you ‘should’ do and feel whatever you damn please!

  2. Lucia says

    Your voice is so clear. I feel so enlightened to be along on the bumpy ride to your recovery.

  3. Alexzandra says

    Margit, thanks for the update on you, I’ve been following along and I’m thinking of you! Be well

  4. ChristinaM says

    I’m in the middle of my own cancer s***show and I am so so very completely over the horrified/pity expressions. I am newly bald and have the tell-tale port that clues everyone in… and at two young kids in tow, that expression follows us.

    May you long survive this. 🙂

  5. Cheryl Botchick
    Cheryl Botchick says

    Not for nothin’, but your hair does look really awesome.

  6. Elisa Miller says

    Margit – you freakin’ rock. People do not understand this and they never will–unless they go through it themselves. I remember from my chemo days that I had no idea just how exhausted I was until I was done with chemo… and then I couldn’t believe how much energy I had (of course that took months). Chemo brain / fog was another thing entirely. What people do not understand is that Cancer isn’t just one thing… it is many… all different kinds and they are all treated in different ways. How I was treated 15 years ago is very different than the treatments they consider now.

    Someday you will look back at the absurdity of it all and laugh… I can’t believe some of the things I went through… they’d make a great comedy routine if they weren’t so bloody personal!

  7. Ren Griffin says

    Oh. My. You nailed it. I found your writing via a FB post and am so glad I clicked. A nurse recently described chemo as the gift that keeps on giving, and I couldn’t agree more. Like you, I had a clot (lung – whoopee!) and a hysterectomy and chemo and boy, do those gifts stink…
    I wish my hair looked like yours – I started with straight thick hair and ended up with frowsy, Einstein-esque baby monkey butt hair with bald patches…
    It does make me smile to read the smart and funny observations from somebody who has been down the same road. Please keep writing, and I will follow.

  8. Heather Boyd says

    So beautifully written. This should be read by every human being, you gave us all a walk in your shoes.

  9. Chi says

    Incredible story, thank you for sharing. And if you ever want to vent or at the very least say all the things you don’t say out of a need to be polite and edit yourself, just say ‘Chi, I need to say some shifty things to someone and not be judged’ and I will be there with bells on. Well maybe not Bella because let’s be honest that would be annoying as shit but I’m down for your valve release if you need it. XOXO

  10. Ted Rheingold says

    I was linked to your post from Twitter. Was diagnosed with metastatic carcinoma, probably renal.

    A) Fu*k Loretta! I hate those stories. If someone’s cancer story doesn’t involve a person surviving against the odds I don’t want to hear it.

    B) Best success recovering and managing. Everyone keeps telling me how amazing my treatment’s affect is (it is, I was put on an Immunological) but no one wants to talk about or hear about recurrence rates, long term side effects, and average life spans. So I sincerely wish you the best in this journey and hope you don’t mind that I link to this post when I finally get my “ettiquite for your friend with cancer post” finally done.

    Best wishes

  11. LISA WILSON says

    Beautifully written, Margit, and so informative. As I read along, I was thinking to myself, ” I hope that I have never said things like that”. People don’t know what to say, they get nervous and they end up saying stupid things. I wish you a very long and happy life, take one day at a time and one day when you are feeling like yourself again, this will all seem like a dream. I know because I have survived Renal cancer, it will be 7 years on August 9th.

  12. Ty Cowell says

    I’ve had, and am having, my own education as the husband of a cancer victim. Part of that education is to understand what to say myself, what not to say myself, and how to respond to the well-intentioned attempts by outsiders. We rocks get these questions and words of wisdom too, as I bet Mark can attest. Your assertion to listen first, and try to understand, then think of a helpful response before we open our mouths, is the best advice. Listening is the best course of action, because after all, it’s not about us; it’s about the victim.

  13. Lori Lantz says

    Chemo has clearly not diminished your way with words! Thank you for sharing your experience. I’m sure that I’ve said some stupid things to people dealing with cancer before – mostly, as some of the other commentators have said, out of nervousness and a misplaced desire to not make the other person “feel bad.” Your honesty and humor are such a boon to many people, whether they’ve struggled directly with cancer or not.

  14. Elizabeth Hilts says

    Thanks for the truth bomb. Really. As one with a chronic illness I needed this today

  15. Suzanne B says

    OMG that brought me right back. I was blogging during chemo and the whole shebang and you just captured it PERFECTLY. What I can say is that you are awesome and I’m rooting for you and I don’t even know you, yet. In my experience… (that’s all I can share) you might have a bunch of s*** days ahead of you or it might be much better than you think, all you can do is take one day at a time, recognise that everyone is doing the best they can, and say thank you with a smile to all the insane and inappropriate things people say and do (i had some doozies). Oh, the pink fluffy stuffed animals and the miracle juices and the … oh never mind. Congratulations on where you are. Beautiful.

  16. Awesome!!! I am a 2 time NHL survivor and can relate to every word u wrote. Jennifer Cullen’s mom has been my bff since second grade. Little Julia is my namesake . We are all family❤️! Would love to know you as I can tell you are my kind of girl. Thanks for sharing your story and helping the ones who haven’t had cancer understand a little better ….. I especially liked the part about after chemo . People really think you jump back to where you were BC .
    I have been cancer free since 2010. My first diagnosis was in 1998. Good luck to you in your recovery . ❤️

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