When I emceed the Hearts at Home conference Moms Night Out session while I was undergoing cancer treatment, I announced that evening that I was declaring the day “National Appreciate Your Nose Hair Day.” Why? Because when you go through chemotherapy you lose hair everywhere and that means nose hairs too! Do you know that your nose hairs keep your nose from running? I carry a tissue everywhere I go because my nose is always running these days.
If you haven’t thanked God for your nose hairs lately (or ever!) do so today. They are important!
All humor aside, we often don’t know what we don’t need to know. Yet, it’s likely that every one of us will likely have a friend, relative, or acquaintance who walks the cancer journey at some point in time.
Today I will share a list of things I didn’t know about cancer before I had cancer. You might never face cancer, but these would be helpful to know if you walk through cancer with someone you care about.
1) While there are standard treatments, everyone’s treatment is unique based upon the type of cancer, the stage of cancer, and their own body. No two cancers are the same and neither are the experiences that surround them.
2) Stage of cancer indicates how much the cancer has spread. The earlier cancer is discovered the better chance that treatment will work.
3) When you lose your hair, you lose your hair everywhere—yes….even there (can you say Brazilian wax without the pain?) Some people lose eyebrows…mine thinned significantly, but I found this eyebrow pencil to be the best at filling it in! I did lose about half of my eye lashes. I do have friends who lost all of their eyelashes.
4) When you lose your hair, it doesn’t always completely leave you bald. I initially shaved my head with an electric razor because the hair was coming out in handfuls and making a mess. Eventually I shaved my head with a regular razor to get the completely bald head. I was more comfortable with a smooth head rather than a stubble head with bald spots.
5) Some chemotherapy drugs cause mouth sores. If you drink a very icy drink while receiving the chemo (like a slushy) it shrinks the blood vessels in your mouth which helps keeps mouth sores from forming. (A nice gesture for a friend in chemo is to ask if you can bring him/her their favorite smoothie or frappuccino during their treatment!)
6) Chemotherapy can throw a woman into menopause….sometimes it’s a temporary menopause and sometimes it’s permanent (personally, at 50, I’m hoping for permanent!) However, the hot flashes have been terrible. They are a part of the menopause. They hit fast and if I’m home, I’m ripping off whatever layers I can. They are miserable…quite miserable when they hit!
6) Ginger Beer has been my best defense against chemo nausea. It’s non-alcoholic like root beer, but made with ginger. The brand I liked best was Bundaberg Ginger Beer. Other ginger products like Ginger Chews candy, and Ginger Tea are also helpful. If you want to give a thoughtful gift to a friend going through treatments that will likely cause nausea, a basket of a variety of ginger products is very helpful!
7) The American Cancer Society provides a free wig to anyone with hair loss due to cancer treatment. Usually there is a wig bank where you can go and try on donated wigs. I initially got a wig through the local wig bank that is located at Fox and Hounds Studio here in Bloomington, IL. However, I made the decision to purchase a wig to better match my hair color and style. Most health insurance companies cover wigs if the doctor writes a prescription for a “cranial prosthesis.”
8) A dietitian, found at most cancer centers, is one of the best kept secrets for dealing with side effects and general nutrition. After Mark and I met with the dietitian, I made changes in my diet and saw an improvement in how I felt. While the service is free at my cancer center, I had to seek out an appointment and I’m so glad I did.
9) Chemotherapy causes terrible dry mouth symptoms. Biotene toothpaste and Biotene Mouthwash were lifesavers for me. That’s another nice touch to put in a gift bag for someone going through chemo.
10) If someone has had a lymph node removal, they have limitations on repetitive actions like vacuuming and on lifting. Offering to help carry something could be helpful. (My family teasingly reminds me that I can still vacuum with my left arm!) This is because of the possibility of lymphedema which can happen even years after surgery. Next week I will be fitted for a compression sleeve. This will be especially helpful for me to wear when I return to more intensive exercise, work in the garden, or return to flying for my speaking engagements.
11) Neuropathy is a painful side effect of chemotherapy. In my case, the balls of my feet and my finger tips started feeling like I had hundreds of splinters in them. I also deal with a terrible case of twitching eyelids–both top and bottom. Sometimes it’s so bad it affects my eyesight. In my friend Christene’s case, her hands hurt so bad that she couldn’t hold a hair brush sometimes. Unfortunately, neuropathy symptoms can continue for months or even years after treatment.
12) Some people lose their fingernails and toenails from chemo treatment. Thankfully I didn’t, but I was aware that it was entirely possible.
13) Fatigue is a side effect most cancer patients deal with. I found the fatigue increased with every chemo treatment. I’m told that I may continue to experience an increase of fatigue with my radiation treatments which will start around the 3rd week of April. This is why providing meals and helping with kids, laundry, or cleaning can be such a gift to a friend going through treatment. (It’s also helpful to know about www.CleaningForAReason.org where they will pair cancer patients up with cleaning companies who will clean for free while they are going through treatment.)
14) The last thing someone going through treatment wants to do is exercise, but modified exercise is important (not on the days you really don’t feel well, but definitely on the tired days). I found my fatigue decreased when I got on the treadmill or went for a walk. It didn’t go away…but it did decrease.
15) Our dietitian shared with us that women who have breast cancer and chemotherapy tend to gain weight during chemo but women who have other kinds of cancer and chemotherapy tend to lose weight. I have found that to be true for sure. I literally put on 12 pounds in about 10 days after my first treatment. They say it’s likely hormonal but they are not sure why the response is so different based upon different kinds of cancers.
16) While I wasn’t initially a fan of Obamacare, I am grateful that it took away the pre-existing condition issue with new insurance. We had to change insurance in the middle of my treatment. Neither Mark nor I have insurance through our employers so we had to purchase it through the marketplace. I was so grateful that having a pre-existing condition did not keep me from securing health insurance.
17) More than 30% of cancer could be prevented, mainly by not using tobacco, having a healthy diet, being physically active and moderating the use of alcohol. (Source WHO) While I don’t know that my cancer could have been prevented, we’ve been changing our diets here at the Savage household to include more whole foods, more fruits and vegetables, no artificial sweeteners, less refined sugar, and reducing gluten.
18) Radiation can cause severe burns (like a bad sunburn) by the end of treatment. Also radiation treatment of the left breast has to take into consideration risk to the heart. (My cancer was in the right breast.)
19) There is a law (The Women’s Health and Cancer Rights Act) that health insurance is required to provide coverage for reconstruction surgery for any woman who has had a mastectomy (and sometimes a lumpectomy) even at a later date.
20) Most cancer patients face fear after they are “cured.” Every ache and pain causes you to wonder if this is a recurrence, or a new cancer. This is why having faith and the ability to stand on the firm, unchanging foundation of Jesus Christ is so important, because life is always changing and shifting under our feet.
Finally, early detection increases survival rates…hugely! Be vigilant about checking your skin for moles that don’t look right. Don’t be afraid to go to the doctor. Get an annual physical. Once you hit 50, schedule a colonoscopy. Ladies do a monthly breast exam and once you are 40 an annual mammogram (earlier if breast cancer runs in your family). Men, do a breast exam as well and talk to your doctor about getting a baseline PSA test in your 40’s to test for Prostrate Cancer. You’re knowledge and care of your body is very important!
What about you? Have you or someone you love walked the cancer journey? What else would you add to this list?
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Here are some things we learned:
If your cancer is being treated at a distant hospital, gas cards are a welcome gift for family members who need to travel and make many trips back and forth. The American Cancer Society also provides grants for transportation so some of that money you donate goes to help families with these costs.
When a cancer patient’s immune system is low and they are prone to infection, little bugs that wouldn’t bother the rest of us a bit can cause incredible complications. You can’t begin to understand the reality of that unless you’ve been there.
Keep a journal ! There are so many doctors, so many meds, so many changes, that it’s nice to be able to refer back to how you felt and when things happened. And when it’s all over, it’s like childbirth, the pain is just a distant memory.
Betsy, these are great additions to the list! Thank you!
Jill, I have not walked the cancer journey first hand, but have done so with my mother and brother. I am so proud of your strength and how you are sharing the little things for your journey. My mother would have benefited from knowing some of the above things before her chemo so that her anxiety would not have been so high when they kicked in. I am praying for you and your family through this journey 🙂
Some other notes.
During radiation it is important to put an ointment like Aquaphor on the radiated side often throughout the day if you can but certainly in the morning and at night.
During radiation you need 70-100gms of protein a day to help rebuild the tissue damage. Because of the protein you then need to drink plenty of water. You may lose your appetite making it more difficult to get these requirements. The nutritionist at CCC has a wonderful nutrition drink called enu’ that has 25 grams of protein and other nutritional ingredients.
There is data that suggests taking vitamin D3 and an aspirin daily may prevent cancer of all kinds. I was taking D3 and ran out about 6 months before I was diagnosed with DCIS. Made me go “hmmmm”
The radiation fatigue is cumulative. You won’t feel too bad until after week 3 and then it continues for about a month after radiation is complete.
Can you say itchy and peeling! But unlike a sunburn the skin underneath has been radiated for 6 weeks so don’t scratch or scrub the peel. Put on more aquaphor!
Good luck. Your notes were very informative, especially about chemo.
Thank you, Deb! I knew we could add to this list and you helped do that!
My chemo nurses suggested I use nail hardener polish during chemo. I was more worried about losing my nails than my hair. I was to put on a coat of polish daily for 7 days, and on day 8 take off all 7 layers and start over. Worked and I actually had beautiful nails.
My last chemo I did the polishes for about 10 more days and stopped. I was done with chemo, so didn’t have to do this…right?
Wrong. 2.5 months after my last chemo treatment, I picked up a bag at a family dinner and felt pain in my fingers. Upon inspection, I found all 8 fingernails had lifted more than halfway back. For 6 more months, I had tape around each nail to keep the nails from ripping. Loose fingernails are tender and lifting flat out hurts. My oncologist then informed me the “effects of chemo stay in the body for up to a year after treatment.” So I suggest the nail polish for the whole year after.
Thank you for sharing that, Tina! I had not heard that about it happening so long after chemo!
Thank you for sharing this list – I had no idea of some of these and if I am met with a friend needing support, I can understand a bit better. Thank you for sharing through your personal experience and being genuine!!
Thanks for sharing this Jill!
These were soooo helpful! Thanks for sharing! You should do 2 more: for helping families after a death and 1 for after having a baby! Sometimes we just need practical ideas to get us into action/service!
I’m very thankful you posted this! I’ve had people I know go through cancer but didn’t know how to offer to help. It’s hard if the person in only an acquaintance and not a close friend because I don’t feel comfortable asking. But I want to offer to help. I can keep this and have some ideas of ways to help.
Couple more suggestions:
Some women prefer scarves for a head covering. They make great gifts. Pick ones that are soft and large either square or rectangle. There are many great Youtube videos showing how to tie them, but my favorite was to use a elastic hair band. So much easier than trying to tie a knot!
Also for survivors that have just gotten done with treatment there are organizations that will give away free admission to some amusement parks. We just went to Orlando to get away and celebrate. We were able to get free tickets to several parks down there. The organization in Orlando is Compassion Partners. They do not have a website but they are awesome and more than willing to help over the phone.
Great to know, Jen!
This is such a good list. So awesome that you compiled it. I will be using this in the future. Best to you and prayers for a speedy recovery!
I love seeing your posts and hearing you on 90.5 in Springfield.
I wish there were something like Cleaning For A Reason for other chronic conditions. I have a connective tissue disorder, Ehlers Danlos Syndrome, and it is unbearable some of the days. I am the homemaker now, raising three girls. I had to leave my profession (as a nurse) because of it.
I would also love more insight on what diet modifications you made. We are planning on doing a cleanse called the Whole30, but after that, I’m at a loss. Just clean eating, I’m hoping for, but I’d love some recipes!
Praying for you and the whole family, Jill!
This is great knowledge and good to remember, also to have in the future if necessary. Hope you and your family are doing well and have recovered from conference.
Jill, thanks for these tips. We’ve been following your journey and praying for you here in Alabama (formerly from Normal).
Wow this info is so helpful! Though my mom had breast cancer she was very private with her experience. Not wanting a big fuss or for her kids to alter their life because of it. I do know she changed her diet and there was a significant difference in her meds compared to that if another family member who had gone thru before her. It’s definitely about making a conscious decision to do things differently. Have faith in God!
Vitamin E 400 IU twice daily and B Complex help with neuropathy. Our GYN/ONC has a pharmacist who works in the office with the chemo..and this has helped my mom avoid any neuropathy.
Hi Jill! I know you from the H@H bb.
I was stage 3 breast cancer. There are two others on the bb also.
Glad to see that you are doing well. 🙂
my tip is ….. NO fresh flowers for a patient who is receiving chemo.
I don’t remember what it is exactly about the fresh flowers but I recall the nurses warned that no fresh flowers are allowed in the chemo unit of the hospital. After a friend brought fresh flowers to me @ my home, I did get sick (feverish, flu symptoms).
My other tip, NO mani’s or pedi’s while going thru cancer treatment, unless you are getting this done @ at an extremely reputable and sanitary spa. My Oncologist warned that it could be deadly if I picked up an infection. Since my treatment I have had a couple of mani/pedi treatments, but I make a point to go the (medical) spa that is affiliated with our local plastic surgery center.
Jill’s list is very much my experience as well. I was diagnosed with advanced breast cancer. Chemo and radiation followed. There are several things I found helpful, and several things that were not helpful.
It is not encouraging when well meaning friends say things like, ” My friend/relative had the same cancer a you and they died.” Surprisingly lots of folks do this. I think they are trying to connect with you, but it is depressing. I learned to be gracious and tactfully change the subject.
Well meaning friends also gave me books about people with cancer. After reading the second one, I found the common plot was: ” I was devastated with a cancer diagnosis, I survived chemo and radiation, then I got cancer somewhere else. :repeat story” I learned to toss these “gifts” in the recycle bin.
One of my good friends battled cancer about a year ahead of me. She gave me some great advice: “Don’t educate yourself about cancer on the internet. Talk to your oncology team. The internet is filled with quacks.”
The most helpful thing that friends did for our family was to bring meals! That was a tremendous gift. I was so exhausted, and it was a huge blessing to have someone arrive with a meal. One family brought an entire Thanksgiving dinner – including a turkey! If you have a friend in the battle with cancer, help arrange a meal for them.
One dear friend just came and visited with me. She helped with any task I felt up to doing. One day we repotted my plants. She touched my heart with her kindness.
Cancer made me evaluate my relationship with Christ. It was no surprise to him. Cancer helped me grow in ways I never thought I would. I learned to accept every day as a gift, and make the most of it. I learned to cut loose any baggage with forgiveness. I learned that everyone is wounded, spiritually, emotionally or physically and they all need grace. I learned to love life.
One of the benefits of chemo was having the softest skin ever. My calloused feet became soft as an infants. All the rough skin peeled off and left soft tender smooth skin. Another benefit was clearing my nasal passages. I never was able to breath through my nose. Whatever the chemo did, it debrided the passages and now I don’t have any problem. I know people that have had surgery to do what the chemo did for me.
I got an Aussie puppy right after finishing my treatment. He is a really great companion and such a happy part of my life. I have enjoyed him so much that I got a second pup two years later. They keep me moving. Nothing is as encouraging as having them greet me every time I come home.
Now I am a few of years out of treatment. I have some problems with muscle soreness. I have been told Fibromyalgia can be a result of chemo. My oncologist is working on that. I have a terrible time opening ziplock bags. That seems weird, but they are nearly impossible for me. I gained lots of weight that I am struggling to loose, but I am loosing weight. Short term memory is somewhat faulty, but notes to self are a good help.
I enjoy every day to its fullest and I continue to make long range goals and plans. I have learned to appreciate my husband more than ever. He is my knight in shining armor! My five children are also one of my greatest blessings.
I enjoyed hearing Jill speak in West Lafayette, Indiana. She really encouraged me and I know that she will continue to encourage others.
Karen, this is great insight. I wish you didn’t have to share from experience, but thank you for sharing your hard earned wisdom!
This is my second go around w ovarian cancer. and chemo is worse this time…and as mentioned, besides radiation burning like sunburn, my chemo burnt my face and hands w 3rd degree burns. cold compress ice packs during and after chemo are a God send as well as Aloe gel w solarcane. (lotions, even medicated, trapped in heat and made things worse) I also made sure i always made a homemade smoothie for my sessions it’s cold and refreshing and healthy!
The biggest advice i’d like to mention is most patients don’t realize is to STAY OUT OF THE SUN FOR ATLEAST A YR AFTER CHEMO! and use plenty of spf! Cover your face w a pretty straw hat.
Thanks for your article. I have trouble trusting doctors…because honesty isn’t always their best quality right?
That’s not been my experience, Sammy.
Thanks for this article! My nose has been running like crazy since I started chemo 7 months ago and everybody thought I was nuts when I said it bet its because my nose hairs are gone. You proved I wasnt totally crazy. lots of interesting info here
Glad to help!
I am a stage 4 head & neck cancer survivor. I lost my nose to squamous cell cancer, so nose hairs are a thing of the past.(It was growing on my cartilage in my nose.) I have a prosthetic nose that is not functional….sure miss being able to blow nose. -Sinus drainage is annoying.
Thankfully I only had to go through radiation. Faith, family and friends saw me through it all. Very blessed to have such a wonderful husband.
Fran, you’ve been on quite a journey. So glad you haven’t done it alone! We are truly better together!
Oh my gosh same here!!! I have NEVER had a runny nose in my life until after taking Chemo. Now my nose drips all the time and it hurts inside!!!
Yep! That’s why!
Thankyou! For not being afraid to declare your faith in your breast cancer fight. I, too, believe in standing firm on the foundation of Jesus Christ. I’m fighting DCIS; Stage 1 brewaet cancer. But through it all: God is still Good. ❤️
Patricia, I’m so sorry you’re walking through breast cancer, but I’m glad I can bring hope and help your way! You’ve got this!
Hey Jill! Thanks for the tips. Finished my first chemo round for breast cancer 2 weeks ago and I’m gearing up for the next one! Fortunately both my oncologist and a fellow survivor warned me to stock up on tissues.. still haven’t decided whether to go ahead and shave my head now, or wait till my hair falls out. I’m kinda wanting to take control and just do it! And yes, my form of chemo guarantees hair loss so it’s a decision I need to make.
Bonnie, you’ve got this! My hair didn’t start to fall out until two weeks after my first treatment. Enjoy it while you have it…but just know when it starts falling it, it will be more like it’s “thinning” than falling out in clumps. You can even have a shaving party! 🙂
Thank you for sharing and comforting–2 Corth 1:3. I was at the Radical Retreat May 3.. and I am so glad to now have this source for our dear pastor who has the triple breast cancer and has finished 4 chemo treatments.
God bless the work of your hands,
Carolyn, I’m so glad you found this too!