One thing I didn’t realize until I got cancer is how opaque the experience of cancer is from the outside. We live our lives assuming that what we see is all there is. So and so’s hair has grown back; they must have recovered. We believe we see the whole experience when, in reality, we only see a small fragment. My first-hand cancer experience taught me that the bulk of the suffering of cancer patients takes place below the line of observation. Outside observers only see a small part of our suffering, and mistakenly assume they see it all.

Why don’t cancer patients speak up? You may ask. Cancer patients in the trenches of treatment cannot always articulate their suffering. Most of them don’t have the energy. Some lack the skills. Other tried and gave up. (It’s hard to explain one’s suffering to someone who doesn’t see it). Inside the Mind of a Cancer Patient is a campaign I am starting to give voice to the million cancer patients suffering in silence. To make their suffering less opaque and more visible, so it can be addressed and alleviated. And to help cancer observers increase their awareness of the components of the cancer experience they are unable to see. For simplification, I define “cancer observer” as someone who is neither a cancer patient nor a cancer survivor.

This Concerns Us All

We are all concerned. Nowadays, cancer incidences are increasingly common. In the United States alone, a new cancer is diagnosed every 30 seconds. We all interact with cancer patients in one form or another. Some of us frequently: as medical providers, caregivers, family members, and close friends. Other casually: in workplaces, in stores, in public places, and on social media. Learning to recognize the unseen suffering of cancer patients is important. The alternative “judging suffering by the cover” leads to oversight, misunderstandings, and hurt.

Medical Providers

Today cancer treatments are fiercely effective at destroying cancer cells. (A desirable outcome). At the same time, the processes used to administer these treatments routinely aggravate the emotional stress of cancer patients. (An undesirable outcome). This extra layer of stress hinders the treatment experience and slows recovery. The majority of medical providers haven’t had cancer; as such, they do not recognize its impact. Cancer treatment is grueling in itself without adding any more layers of suffering. Oncology providers seeking to improve cancer outcomes should look into reducing the unnecessary stress interwoven into the treatment experience. I expanded on this topic in a research article published in the SAGE Journal of Patient Experience: Leotin, S. (2019). An Insider View of the Cancer Radiation Experience Through the Eyes of a Cancer Patient.

Friends, Families, Communities

Outside the hospital, social relationships are a source of support and comfort for cancer patients, but also of stress and hurt. It’s a common refrain in cancer support groups. In general, people mean well and want to be helpful. They just don’t’ know what to say. Or they say things that end up hurting the feelings of cancer patients without being conscious of it. It’s hard to imagine the patient perspective when one never had cancer, and, has a lifelong habit of judging suffering by the cover. (Most of us do). Other people find it easier to avoid cancer patients altogether. All cancer patients have experienced disappearing friendships as a result of their cancer diagnosis. (It’s painful).

For reflection, here are common remarks commonly heard by cancer patients in one variant or another. To cancer observers, they may look harmless. But for those going through cancer and hear them constantly, they often lead to hurt. Can you guess where the hidden thorn lies?

  • “You are lucky you have breast cancer”. 
  • “So and so didn’t get chemo; they got off easy.”
  • “You didn’t get a double mastectomy; it mustn’t be that bad.”
  • “What doesn’t kill you makes you stronger.”
  • “Everything happens for a reason.”
  • “Sorry to learn you have cancer. My dad had cancer and died”. 
  • “This probably wouldn’t have happened if you did [insert any healthy activity].”
  • “I know what you are going through; I broke my shoulder once and was miserable for a whole year”. 

I’ll keep writing on this topic. Subscribe to my blog to be notified of future posts.

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29 thoughts on “Inside the Mind of a Cancer Patient

  1. Thank you for sharing….. I had lung cancer 2006 and breast cancer 2011. Been in the UK that time.. My word it was hard times…

    1. Hi Johanna, it’s nice to meet you on my blog. I’m sorry you had to go through cancer twice. It must have been grueling physically and emotionally. Congrats on being a 2X survivor!

  2. I am going through the cancer trail, had double mastectomy March 2019, all family and friends have pushed me aside, I’m alone with the world just doing their own thing. Good luck to everyone fighting cancer and peace be with you.

    1. I am sorry you are going through all this pain. It’s hard. Many of us have been there. This is why I write. To bridge the gap between cancer patients and cancer observers. I know it’s a tall order. But I keep hoping there can be a path that leads us there…

  3. Sylvie,
    Thank you for this perceptive and moving post. I especially liked these lines: “We live our lives assuming that what we see is all there is….We believe we see the whole experience when, in reality, we only see a small fragment. My first-hand cancer experience taught me that the bulk of the suffering of cancer patients takes place below the line of observation.” I’m intrigued about “Inside the Mind of a Cancer Patient” as a campaign, and I am looking forward to hearing more!
    Sincerely,
    Ali

  4. Sylvie, thank you!! We can all benefit from the wonderful work you are doing to help people dealing with cancer. We never know who and when will be affected and it’s important to understand deeply the life-changing impacts and gather support.

  5. Thank you for sharing your story. I will also share on my “Breast Cancer Awareness South Africa” page as I think it is a great read for cancer observers. I often get asked by people, now that I am in remission, what they should say to others who are fighting cancer – so it is something cancer observers want more information/assistance on, it is awkward for them. Prior to me having cancer I also came face to face with cancer patients, mostly family, it isn’t easy being an observer either. Well done. 👏🏼🌸💗

    1. Thank you, Tanya, for your comment and perspective! It is nice to meet a reader on a different continent! Thank you so much for sharing my post on your cancer awareness page. Now I know whom to thank for the impressive number of page views in South Africa! Thank you!

  6. Dear Sylvie,
    Your clear and honest writing style will help many of us. The “inside the mind of a cancer patient” is a much-needed campaign and awareness effort. I look forward to more inside perspectives.
    Myriam

    1. Dear Myriam, it is so nice to hear from a longtime friend who is a cancer observer. I really appreciate your comment and openness in seeking to understand the perspective of cancer patients. I know it hasn’t always been easy. Thank you for your effort and friendship.

  7. What a gift. Driving awareness and ongoing learning while connecting us with each in a world that could use more of each. My hope is this will bring healing to all. Thank you for opening my eyes and mind.

  8. Thank you so much for this blog! I have Stage IV Colon Cancer. I was diagnosed at the age of 25. I am currently 27 still in treatment. People do not fully understand the emotions of cancer. The mental part. I’ve lost friends and now I am in the process of finding myself again. I give all the glory to God because he’s been with me every step of the way and I don’t want to do this without God. I tell people all the time, positivity works. A positive mindset is very powerful and so are vision boards !! I want to be a living hope for others and encourage people to move forward and that they can be a miracle in the making if they only believe!

  9. Hi Sylvie, I am going through bout #2 with colon cancer but the DR is pretty optimistic this time it can be cured.
    Unfortunately, I have had to fight this alone…I was first diagnosed in 2014 just 3 months after my divorce was final. This time, I am still on my own. I have an amazing group of friends… but its not the same as having someone beside you. It is crushingly demoralizing; the daily struggle and battle with side effects just grinds you down mentally. Sometimes my ‘cover’ is good so people think all is well. But I want them to look and see the pain in my eyes. Mostly, they don’t.
    I look forward to reading your blog.
    FYI, I have treatment 8 of 12 coming on Wednesday. Time to paint on that smile…
    Paul

    1. Hi Paul, thank you for sharing so candidly. Being single, I too had to fight cancer alone. It’s hard. My body never had time to rest or heal. It didn’t help that people didn’t see the pain in my eyes. I hope you will subscribe to my blog so we can stay in touch. I wish you the best with your upcoming treatment and all the follow on ones!

  10. Thank you for sharing! I am a 4 time cancer survivor. I have had colon cancer 3 times at 21 , 34 and 37. At 37 I had all of my colon removed and now have an ileostomy.
    I have done remarkably well even having a baby at 42. However a few months ago at 52 I was diagnosed with breast cancer. It opened up a lot of feelings that I had put on the back burner. My prognosis has been good after a bilateral mastectomy and now reconstruction. However the fear has returned and always in the back of my mind. They have determined that I have a defective Pold 1 gene that has caused my problems and possible could cause more. I am so very Thankful to God for his healing and answerred prayers!

    1. My god, Tina, 4X cancer survivor! I can’t imagine the pain you went through in your life. Your resilience is exemplary! Your fear of recurrence is a normal human feeling. May your heart find peace in the midst of it all. May your healing continues. You are a bright star.

  11. Dear Sylvie, This is a really valuable post. As a person who supports people with illness, this post offers perspectives that are otherwise not accessible. I’m deeply grateful about it. The post clearly resonated with a lot of people based on the responses. I truly appreciated everyone who commented as well, they brought additional lights to otherwise a big blind spot in caring, supporting, interacting with cancer patients. Thank you for your daring and honest posts. May many people benefit from it.

  12. Sylvie,

    As always your writing is clear and rhythmic. I feel there is a song in there. Keep inspiring us all to be more understanding.

    Teresa

  13. Thank you, I needed this. I was diagnosed with breast cancer 7 weeks ago, breast surgeon stated my mastectomy would be in 3 weeks, I’m still waiting. I then had a gallbladder attack 3 weeks after diagnosis, HIDA scan showed non functioning gallbladder with EF of 12%. My surgeon agreed to do gallbladder and mastectomy at the same time. 5 days later I’m admitted in the hospital with severe abdominal pain, my surgeon refuses to admit could be my gallbladder, and puts me through CT, U/S and endoscopy that showed nothing. I was on the schedule for gallbladder removal and mastectomy, he cancelled and discharged me home, wanting to let my stomach settle down. I’m a health care professional, and this happened to me. I’m seeing a second breast surgeon tomorrow and hope to finally be heard and a surgery date.

    1. Hi Karen, I am so sorry this is happening to you. It must be nerve-racking. I also went through a rollercoaster of obstacles scheduling my cancer surgery last year. It was a nightmare. I really hope you can get your voice heard. Don’t give up, no matter how hard it is. It saved my life. Sending you good wishes.

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