10 Things Cancer Patients Don't Want to Hear

(posted on former website 10.23.2015)

Yesterday I had lunch with an amazing cancer survivor. She has done some amazing things, for hundreds of people who have been recently diagnosed or are going through treatment. She has helped me immensely with ‘check in’ texts, gluten free meals, emergency tea light purchases and the odd little gift or treat left at my door.

We ate lunch and she shared her story. I’ve always believed there is power in sharing one’s story, as others can find their own story in there as well. Understanding and hope are uniting forces. She shared about the wonderful, life affirming things people did, but she also shared aspects that she didn’t like, that others did, concerning her cancer journey.

I realized I wasn’t alone in my thinking. When she was sharing what people said and did that upset her concerning her cancer diagnosis and treatment, it triggered what I had encountered.

Below I share ten things I, and most other cancer survivors, do not want to hear from you as we go through our cancer journey. I wish for you to learn what not to say, or do, when around a cancer patient/survivor. I don’t share this to be cruel to you or to ‘guilt’ you for your actions, I share this for you to be sensitive. You see, you are not the only person who has done these things that hurt us. When a cancer journey begins, we are bombarded with these happenings. We know there is a desire to connect with us and with that sometimes people say, or do, the inappropriate thing; we are human and we make mistakes. I LOVE and appreciate this desire to connect with me. I share this list for you to be sensitive; my intention is to be strong and win this battle, and I know you wish the same for me.

Ten Things I Don’t Want to Hear from You, or Have You Do, When I am on my Cancer Journey.

1. When I am first diagnosed, I know your intentions are pure and that you want to connect with me in this very difficult situation. But please do not tell me about anyone you know who has died from cancer. I don’t want to hear death stories. I want to focus on life.

2. Chemo is hard and the effects of hair loss are just as hard. Surgery and drugs have altered my body; in fact, there are times I pass by the mirror, and I don’t recognize my body, face or head. So, after I share about losing my hair, eyelashes and eyebrows, I do not want to hear about your ‘nonexistant’ eyebrows and eyelashes. It is not the same.

3. During the chemotherapy treatment my entire body is altered. The powerful drug changes my cells and my blood; side effects are extreme and hard. There are times when my immunity is compromised and I am unable to fight infection (been there, done that!). When I see you, I am VERY happy to see you and wish to hug you (as I am a very affectionate person). However, when I tell you that I am unable to hug you due to my low immunity, please do not hug me anyway, or kiss me on the check as an alternative. Please accept my personal physical boundaries at that time. There is a reason for my distance; my health and healing are dependent on it.

4. If I had my way, I wouldn’t be going through this, but I am, and so I have figured out the best plan for my recovery. For me, I trust the cancer experts that are working with my case. So, please I don’t need you questioning my treatment that the Doctors and I have agreed upon. My Oncologists are experts in this cancer cell field, while you and I are not. For example, I am an Art expert in my classroom, and when I tell a student to alter a section of their image, by doing this and that, to make it more effective, and they do it…guess what? The image is improved and they are happy with the results. Sometimes we need to trust the experts.

I know you don’t want me to go through more than I have to, or suffer any more. You see, in others and me, that this cancer recovery is hard work. I intend to beat it in any way possible, and I am choosing to have chemotherapy, radiation, Herceptin IV treatment for a year, and other medications . I don’t view chemotherapy, Herceptin or radiation as poison. I choose to see it as medicine to help me heal. I choose to see it as on opportunity for my cells and my body to begin again. I see life in this treatment. And yes, life can be hard, but I intend to come out stronger and better.

5. I exercise. I drink diet pop. I each lots of fruits and vegetables and limit my carbs. I love chocolate. With this said, with my diagnosis of cancer, I don’t need you guilting me on my past food, drink and lifestyle choices. You are basically pointing the finger at me and saying “What did YOU do wrong to deserve this?” Again, I know you are trying to figure things out. But it is done; cancer has become a part of my story. I had a fast growing and spreading tumour in me, had it surgically removed and am now undergoing chemo, radiation and another intravenous drug for a year to make sure it doesn’t return. Let’s focus on the positive, on what I am doing well, and leave that negative guilt behind.

6. I know you want to connect with me concerning my diagnosis and treatments, but I don’t want your pity, to be given a pity look or for you say with deep sympathy in your voice, “I’ll pray for you.”  I know cancer is a scary journey and that I can sometimes shock you by my appearance (when I don’t paint the eyebrows in), but I want to see joy in your eyes when you see me. Pity isn’t empowering. If you are going to pity anyone, pity everyone. Everyone is going through his or her own battle. And if you are handing out sympathy prayers, pray for everyone. Everyone has something they struggle with or need. Let’s give strength, hope and love to others when we see them, talk to them and pray for them.

7. Life is wonderful and challenging. Undergoing cancer treatment is no different. But please, don’t look at me with a somber face and say, “It is all in God’s hands.”  Have you already assumed my death sentence? All I know is that I can do my best to fight this disease, and yes, I could die from it. If it is all in God’s hands, let’s focus on the positives that God has given me: doctors, drugs, the Canadian medical system, therapists, friends, family, loving strangers and my will. I am not a mindless or directionless person. What I do has an effect; I choose to be proactive and to be positive. “God is good, God is great…”, but the Almighty also provided all mighty drugs, a personalized treatment plan and an amazing support system for my victory.

8. You know how life can be tiring? When undergoing cancer treatment, my body is being physically transformed, and there are days when I am in survival mode. I still have my concerns of life, but sometimes I can only manage one moment at a time. So, please don’t guilt me by saying, “I worry about you, I’d really like to hear from you more,” or “Did you get my text? You didn’t answer me.” Yes, I got your phone call, card, email, text and/or Facebook message, and I want to connect, but I can’t think straight because of the chemo and my energy is limited.

9. For the caregivers, I know how tired you are. I know you are working full time, are concerned about me and are taking on more of the household duties that I used to do. I see the effects of my treatments and recovery on you, and I wish you didn’t have to carry this burden. And so, I try to help out the best I can, but it is not much. And there are times when I look and sound well, but I’m not. So please know, at this time, I can’t do what I used to do.  I can’t think of what is for dinner tomorrow when I am lying on the bathroom floor, from chemo effects, am in severe pain, and have gotten 1 ½ hours of sleep. I can’t grocery shop, clean the house (not that this was a strong suit before my cancer journey!), take care of you when you are sick ,or go for a night out on the town. I want to be what I was before, but this is what I am now, and I still need your help.

10. I have gone out without wigs/head coverings and makeup, but the majority of time, I put makeup on and choose my favorite crown covering of the moment. I do this for me, not you. For when I look in the mirror, I can quickly glance and see someone who doesn’t look like she has cancer. I know I have makeup on and that this blonde bob is not my hair, but I feel stronger and ‘normally’ healthy. So when you see me don’t’ be surprised when I look good and comment, “Wow, you look good!!!” You and I know treatment is rough, but I work at appearing healthy. I work at pushing myself to go and get the mail, pick up a few groceries etc. I work at painting in my eyebrows, brushing my cheeks to a healthy glow and adding mascara to my 7 remaining eyelashes. I work at having a 5 minute conversation with you when I struggle to put sentences together with my chemo brain.

Thank you for your compliments, just try to hide your surprise.

There, I said it. It was hard for me to write this, as despite what the above list states, I have been completely surrounded by love and support. I shared this with you today because, after talking to another cancer survivor, I realized that these unbeknownst actions and words from others affect the survivor. They have touched me and I try to brush them off, but they are still there. So, the teacher in me decided there needs to be a lesson on this matter. Take what you will. The key is, whether someone is battling cancer, or not, give out love, not fear. Surround them with love, kind actions, and inspiration.

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I am interested in your response. For those who have gone through this cancer journey, what do you think? Did I miss any situations that you have gone through, and that you would like to share? With that said, please share it as an opportunity for others to learn and grow from. We are all just doing our best…and when we know better, we do better.

Former Comments:

from Marilyn: Thank you for this lesson, Barbara. I haven't met you personally, yet, but I am realizing that you are an innate teacher and I thank you for so generously sharing your gift with us. I confess I have been guilty of some of the things on this list and have encountered others, as I am also in the process of healing from a serious medical condition. Knowledge and awareness are so empowering. Again, I thank you.

from Best: I understand that life is really difficult. I must be friendly to them. I remember my classmate. She has a cancer on her breast. I decided to visit my classmate. She is Ellise. She lives in New York City. I admire her personality in life. She is really brave. I understand that cancer is a serious disease. I am aware that most people feel afraid and unsure about treatment, side effects and the likely impact on family and work. I believe that cancer can also feel like a threat to her way of life. I searched the possible condition of a patient cancer. I find out that having cancer doesn't mean you have to lose hope. The outlook for many cancers is improving constantly. Some cancers can be treated successfully, while others can be controlled. If the cancer can't be controlled, symptoms can be relieved to make life more comfortable. It's still possible to live well

from Clara: Barbara, thank you for this. I've been both the recipient and giver of well-intentioned but less-than-helpful comments, and your thoughtful advice is so helpful. Sending love and my continuing good wishes for joy, health, and strength. You're a shining star, girl!

from Sandy K: Thank you for sharing! If I could add something to the list... If I could go back, and be able to say something to people, I would tell them: If you don't know what to say, please find something to say (anything), even if it is "I don't know what to say" rather than walking away and me having no one around. Be patient with me, as I don't know what is going to happen, how I'm going to feel, and how I may or may not respond to you. I'm confused, hurt, mad, and sometimes thankful... but most of all I need to know that people are there for me, as I can't do it on my own.
People also don't know what your family and close friends go through too. My poor children, grades 4 & 2 at the time were asked by adults, how long does your mom have to live.... People don't know just how cruel they are not only to the person with cancer, but to their families too. I haven't shared much from way back then... I guess its time to start to let some of those wounds heal.

from Madena: There Are so many things NOT to say to someone who has received a cancer diagnosis or is going through treatment
The sayings like" God doesn't give you more than you can handle?"
Or "at least you Can get new boobs?"
"SUGAR can cause cancer "you eat a lot of sugar dont you?
"It's the best cancer to get"
I think people really don't know what to say ,they are shocked to hear to,they really mean well ,but it doesn't always come out of their mouths the right way
A "Good" friend of mine Told me ,that most couples end up in divorce because of breast cancer ?
Really I needed to hear that on top of " you have breast cancer" and now I have to worry my husband is going to leave me because I don't have boobs?
My advice is to just really speak from your heart,
don't judge,don't assume you know how it feels,
Express encouragement ,and offer your support
The simplest expressions ,mean the most
And just listening and being there is a great thing
" I am here if you need to talk "
" please let me know if I can help in any way"
" I am thinking about you and your family "
" I am not sure what to say ,but I want you to know I care"

from Brandi: I agree with all of these. I would add: do not tell me I will make it through. You don't know that. Also, do not tell me that if I pray enough Jesus will heal me. That assumes I am not praying, or not praying "enough", and is a judgment. Don't tell me "If I had cancer I would..." You don't know until it's you. And don't tell me about all the people you know who had breast cancer and are just fine now. I think the common thread in these comments is that people say what makes them feel better. And there is a huge misunderstanding about breast cancer being one disease with exactly the same markers for everyone.

from Ninja: What a precious information is here about how we should have behave and talking with cancer patient and i really never saw most valuable post like this about this topic so we should appreciate it.

from North: Beside these things if you want to show humanity to anyone you should stay aware of what the person is going through.