Chemo Tips: No Horror Stories, Please

If you have a friend or family member taking treatment for something serious (and most of us sadly do) and want quick advice, scroll down to Great Hats, Cards, Eating, and especially—Say Only Two Things.

Casting while bald (Penobscot River).

Three days after remarrying in January of 2016, I was diagnosed with breast cancer. I am now three years cancer free.

I published my first novel, Deadly Trespass, when I was done with chemo but still deep in radiation therapy.

This fall I will publish the second Mystery in Maine, Deadly Turn. Almost a third of it was written before I was diagnosed. I came back to it almost fearfully. My first novel won the hearts of readers as well as awards and recognition. Could I engage readers all over again?

Meanwhile people around me and close to me continue to be challenged by cancer. Recently one of them asked me for tips on managing chemo, and, taking a deep breath, I’ve decided to share my letter.

Dear Kathy,

Happy to help!

Different: Everyone’s experience is different. The buzz is that those of us who go into chemo feeling healthy and fit (I did) may have a harder time when and if the chemo makes us very sick. We can get angry and depressed about being made so ill in order to have a chance at getting well. People already feeling ill with cancer often feel differently about how chemo can be a hopeful pathway out of sickness. Talk to your doctor or trusted provider or therapist about this.

Horror Stories: Ignore EVERYONE who tells you a horror story about a relative or friend who had something terrible and “bounced back just fine.” Ignore ALL that. If you can find a nice way to cut someone off before they start this rap, go for it. (They don’t know it’s insensitive. It’s hard to know what to say.)

My oncologist told me I would not know what my life or capacity would be like until the treatment and recovery time was over. She was right.

I was sometimes able to put my hand on someone’s arm and say, “I don’t mean to be rude, but hearing about others’ stories isn’t working for me right now. I’d rather hear about you. Tell me what you’re up to….”

Wigs also kept my head warm!

Real Hair & Wigs Too: I had great advice to get a very short cut before my hair started to fall out. It made the transition easier when it did start to fall out, and I got to experiment with short hair early on. I was ready to accept new hair styles when hair did reappear. Wigs: The American Cancer Society provides free wig fitting and free wigs. Contact your local chapter. I had such a positive experience choosing one. I wore it when I wanted to be out as ‘me,’ not someone undergoing treatment.

Hats: Ask for lots of lovely big hats. I enjoyed wearing them over my bald head or over scarfs. Now I garden in them. Good news: they are very ‘in” now.

Chemo Brain: Make a chart that schedules all your medications and dosages. I had alternating medications on different days and it was essential to be well organized. Depending on dosage, chemo brain in a real thing. You may need to depend on the chart to think for you.

Hydrate Despite It: If you have nausea, get Reeds Ginger Brew/Beer. Very helpful but strong.

Misbehaving Body Parts: Depending on chemo dosage, different parts of your body may misbehave. (Chemo may damage many other fast-growing cells, so mouth, nose, reproductive and elimination systems, and stomach are all fair game.) Use coconut oil in and around special private places. I used various kinds of tummy teas for nausea (mint is good).

Nurse and PA Advice: Ask the nurses and PA’s who treat you for advice. They have great tips. My nose felt terrible and kept bleeding and they suggested a common over-the-counter spray that cleared that right up. Tell them what body part is acting up and ask for help.

Eating & Food: Send a message to friends/family with suggestions. It may be best to hold off until you know what you can tolerate or even desire. My husband ate all the food given to me; I hadn’t figured out I could ask for what I wanted. (That was not a total loss. I didn’t want to cook or smell cooking. So yes, do ask for your partner’s fav stuff.

Emily McDowell & Friends (site) has cards that help us “find the right words for people experiencing major illness, grief, and loss.”

 

Great Cards: Send this link to people you know who want to reach out. Go to Emily McDowell & Friends for amazing “cancer” cards. Again, ask for what you’d like.

The Ghost. Depending on the type of chemo, folks often go through a ghost phase in each cycle when they are just a shell drifting between bed and bathroom. A disappeared person. That’s OK. Find some great programs to binge watch. Stock up on movies or make a Fav List on your streaming service. It’s good to zone out. (Thank heaven for “Friends” reruns.)

Out: Try to get out and walk a bit each day; breathe fresh air and feel nature all around you. I had a folding chair and went to lovely places by the ocean and set it up. I’d walk a bit and then sit a bit. Was restorative.

Food as Treatment: This may sound controversial, but it’s the advice my oncologist’s nurse gave me. Whispered to me in the hall. “You can work on fabulous nutrition in recovery. The goal is to get food, any food, into you. Eat whatever you want to sustain yourself.” I found I could drink smoothies with vanilla ice cream. Or ones with frozen bananas. Straws and coldness soothed a raw throat.

Food and Recovery: That’s when great nutrition should kick into high gear. I got a tip from my PA who said our micro-chemistry is way off and that imbalance does not show up on most labs. She suggested Green Superfood by Amazing Grass, but there are other similar ones out there. (Yup. Tastes like grass; chug with juice.)

Also find and take a fabulous probiotic to help you with an injured immune system. (Chemo does that.) Another PA said I should take these forever after chemo.

Functional Medicine … for after: Finding a provider is on my “to do” list because I have nagging feelings that chemo and treatment have disturbed my body and potential health in ways I can feel but not figure out—in ways specialists can’t quite figure out either. This branch of treatment is still a bit controversial but if the highly professional Cleveland Clinic has brought it in-house, it is clearly moving into mainstream medicine. https://my.clevelandclinic.org/departments/functional-medicine

Say Only Two Things: All professionals and therapists advise friends and family to SAY ONLY TWO THINGS. “I am so sorry. What can I do to help?” (Please see item #1 above, re: stories.)

After treatment pic with granddaughter and hair. Grateful!

Wishing you a great care team, resilient family and friends, lots of bird feeders so you are surrounded with animal gladness, some green space where you can breathe deeply, and at the end of it all, hair. It is such a guilty pleasure.

Sandy

Sandy’s novel “Deadly Trespass, A Mystery in Maine” won a Mystery Writers of America award and was a finalist in the Women’s Fiction Writers Association “Rising Star” contest. It’s at all Shermans Books and on Amazon. Find more info on the video trailer and Sandy’s website. “Deadly Turn” will be published in 2019.

 

 

 

About Sandra Neily

Sandy’s novel “Deadly Trespass” received a Mystery Writers of America award, was named a national finalist in the Women’s Fiction Writers Association “Rising Star” contest, a finalist in the Mslexia international novel competition, a runner- up in Maine’s Joy of the Pen competition, and recently, an international SPR fiction finalist. Sandy lives in the woods of Maine and says she’d rather be “fly fishing cold streams, skiing remote trails, paddling near loons, or just generally out there—unless I’m sharing vanishing worlds with my readers. "
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12 Responses to Chemo Tips: No Horror Stories, Please

  1. Julianne says:

    Sandra: That last portrait of your bald head is so regal. You have a smooth curve and pleasing proportions. Given your druthers I’m sure you want your hair back, but in the mean time, your bald IS beautiful!

    Thank your for your candor. It’s seriously lacking in our world today.

    Like

  2. Alice says:

    Thank you and AMEN! to all that you said

    Like

  3. Anonymous says:

    Sandy! It’s Patsy West. So sorry you are fighting cancer. You have a great handle on it and certainly are helping others. Wonderful! You have always been beautiful inside and out. You are lovelier than ever! Congratulations on your books! Need to read your first. Recently retired after 44 years in the travel business. My Sophie going to college in Vermont. Would love to see in Boothbay someday when visiting!!!! Keep buying those fab hats!!! Much Love ❤️❤️❤️❤️

    Like

    • Sandra Neily says:

      Thanks Patsy! Your message made my DAY! You deserve retirement. You have made life and travel so accessible and wonderful for so many zillions of us. I’m on the other side of treatment. Picture at bottom of blog is me with my hair and granddaughter. Sending hugs!

      Like

  4. Allison says:

    I love this post. Those cards are wonderful! I finished my major treatment a year ago. Still dealing with lymphadema, but that’s no big deal, relatively speaking. When people ask for advice for themselves or a friend, I’m going to send them this blog. I have several items I usually recommend (soft, light throw; cushion for seat belt to protect cath port; and so on). This will make a great addition.

    Like

  5. Linda Folsom-McEachern says:

    Diagnosed in 12/16. Mastectomy followed by chemo. Every body is different, my experience, better then some. 2.8 yrs cancer free.
    Great sdvice.

    Like

  6. Anonymous says:

    Hi Sandy,

    Lumpectomy both breasts, chemo done, now doing radiation. I love your comments Sandy and so thankful that things are going so well. I just saw Linda’s post and she looks amazing too! We are definitely strong women and survivors. 🤗🤗🙏🙏

    Like

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