The Psychological Burden of Cancer

Posted on: July 31st, 2011 by
44

August 2 marks my 10-year anniversary. 


That date was my last chemotherapy treatment for breast cancer. 


Before cancer, I was young, fit, and health-conscious. I was naively confident that if I were proactive in my health, I would avoid getting a serious ailment. Now, with a breast cancer diagnosis, I found myself in the fight for my life and so very ill from treatments.


After my last treatment, I stood up from the chemotherapy recliner and thought I was done with cancer. So did everyone else. My phone rang off the hook with calls of congratulations. I received yummy goodies, flowers, cards, gifts, and other celebratory communications. 


In addition, doctors enjoy doing follow-up appointments with me because they consider me a success story. Our conversations are light chit-chat. My doctors are excellent because although they are optimistic about my progress, they willingly address any fears I bring up to them.


Yet I still cannot rest easy. 


Cancer did not kill me, but it has permanently affected my psyche. How can it not? When chemotherapy ended, my coping attempts with cancer actually began. And I wasn’t good at coping, for I simply couldn’t process what had happened to me. I could not  easily re-enter the world of normalcy, whatever “normalcy” means. 


Ten years later, loved ones see me as the cancer conquerer. Ten years later, I know I’m much better emotionally, thanks to therapeutic techniques, but I know I can never be the same. 


Too many triggers. Too many mind gamesToo much has happened during this last decade:


My friend who was supposed to be a breast cancer survivor had a recurrence and died. For about three years, I took her to almost all her chemo treatments. Now I don’t have her anymore, and I feel survivor’s guilt.


A few months after my friend died, an MRI detected something suspicious in my same breast previously affected by cancer. The fear was so agonizing. Lucky for me, a biopsy showed it was scar tissue. Unlucky for me, more fear was deposited in my fear bank.


I had three lumpectomies and a double mastectomy with DIEP flap reconstruction. First of all, ICU was sheer anguish. More fear in the fear bank. And negative body image. I was angry to have been reconstructed in plastic surgeons’ image of what I should look like. I am grateful to all my doctors for doing such an excellent job, but coming to grips with my new torso has not been easy.


I must live with fear of recurrence or a new cancer. I try my best to cope with this.


Like so many patients in the cancer world, I have fear of facing doctors, as well as getting medical exams and tests.  At doctors’ offices, I use a variety of coping tools, such as listening to music, sketching, reading a novel, and positive self-talk. I also list words describing me in order to feel more powerful in a situation where I really am quite vulnerable.


I’ve learned that cancer may leave one physically, but it always remains in one’s psyche.


However, despite the fear, suffering, and pain, I have gained a lot of insight. I savor each day. All the small moments in life are really big moments to me. My daughter’s smile. The sound of my friends’ laughter. The nudge of my cats’ good-morning greeting. 


And I realize that the depth of my cancer-related sorrow and grief is counterbalanced by the depth of joy I experience in these moments….every day.


44 Responses to The Psychological Burden of Cancer

  1. Marie had this to say about that:

    There is an expectation that when you walk out of hospital on that final day, your cancer story has ended. But in many ways your story is only just begining – the story of the rest of your life. While the treatments for cancer – target the disease quite specifically in the body, the experience does not leave the mind, the spirit or the emotions untouched. I have met too many cancer survivors to know that the experience touches us at a very deep level and the reverbations go on for months, years and perhaps a lifetime after treatment ends.

  2. gillian had this to say about that:

    Fabulous post. Thanks. Know the feeling of the fear only too well. And when I drive to the oncology centre for my four monthly check-ups, feel like I am going to throw up in my car. Then when I am there barely ask any questions as the only thing that matters is that I am ok. But otherwise – am fine!!

  3. Beth L. Gainer had this to say about that:

    Marie, thank you for your thoughtful comment. I like the way you put it: after treatment — if one is lucky enough to have a last treatment — the story begins.

    I love this online community; it’s easy to feel less alone.

  4. Beth L. Gainer had this to say about that:

    Gillian, thank you for your kind words. I totally get what you are saying. Sometimes when I’m waiting for the doctor, I feel like tearing out of the examination room and running away.

    It’s hard to battle those inner demons, huh?

  5. Katie had this to say about that:

    Beth,

    Congrats on 10 years! You really are an inspiration. It was that sense of being lost post-treatment that led me to Marie and eventually to the rest of you. Coincidentally, I just posted today mid-freak out after a pap smear this morning. Nothing is ever simple after cancer.

    Katie

  6. Beth L. Gainer had this to say about that:

    Thanks, Katie!! I am so glad to have connected with you, Marie, and the other great bloggers, as well. That post-treatment stuff is a heavy load to bear. I’m so glad that cyberspace makes me feel less alone. You and the other bloggers I’ve connected with totally “get it.”

    I will have to check out your posting ASAP. Freaking out in medical situations seems to be my gig, too.

  7. Tami Boehmer had this to say about that:

    Thanks for the honest post. I know it is always scary thinking about recurrence. I get scared every three months for my scan, so I can relate even though the recurrence part already happened. Glad you have coping skills in place and people who support you. I hope you do something nice for yourself to celebrate 10 years.

  8. Kathi had this to say about that:

    So much truth, so much heart in this post. I get to freak out again in two weeks when I have a ‘routine’ diagnostic mamm. Funny how so many words change for us, isn’t it? There is no ‘routine’ test for us anymore. ‘Negative’ is now positive for us. There’s no ‘all better’ and everything is relative as we try to balance on this odd rollercoaster of post-treatment. Still glad I’m on it, but sometimes I have to hang on harder than others.

    Thanks for another resonating post, Beth.

  9. Cynthia Morris had this to say about that:

    You’re amazing, Beth! What courage you have. Thanks for sharing this important anniversary with us.

    Glad you’re here to write about it.

  10. Alli had this to say about that:

    Beth so true!! Once we complete our treatments is when the anxiety of it all seems to have the greatest impact. Was it enough or not, what happens now, so many critical decisions we feel we have to make. So many faces we have to put on to make others feel better.
    It can be so overwhelming that you just want to run in the opposite direction except you can’t because Cancer has made your body home. Everyday is a new day with some bumps at times but we cross over those bumps keep moving forward….
    Love Alli…….XX

  11. Beth L. Gainer had this to say about that:

    Tami,

    Thank you for commenting. It seems, no matter our health status, there are always these inner demons — these fears that are so disabling sometimes. All we can do is go on….

  12. Beth L. Gainer had this to say about that:

    Kathi,

    Your comment is very insightful. Words have different meanings to us who have been affected by cancer.

    It is so hard to go through those “routine” mammograms. All you can do is go through the motions and that’s courage. I know what it’s like to freak out with these “routine” exams all too well.

    Maybe bring some music to the appointment, or whatever distracts you. I hope they let you know the results right away. I have HATED the waiting game….

    Please keep us posted…

  13. Beth L. Gainer had this to say about that:

    Cynthia,

    Thank you, thank you, and thank you. I don’t always see myself as courageous. And I’m glad I am here to write about my experiences.

  14. Beth L. Gainer had this to say about that:

    Alli,

    You make great points. Ever since cancer has touched us, we are forever changed. Too many quick decisions to make. And, yes, wearing faces to make other people feel better. I found myself having to lift others’ spirits, when mine needed the lifting.

  15. nancyspoint had this to say about that:

    Oh Beth, this sort of relates to my post too about ruling things out; the problem is, cancer cannot be ruled out for good once it has struck. Once you hear those words, “You have cancer,” life is altered. For good. Ending treatment does not end the cancer experience does it? I know what you mean about friends and relatives proclaiming you to be a cancer conquerer and how you struggle a bit with this label. The “cancer enemy” is never truly conquered, we just do our best to hold it at bay. Great post!

  16. Cheryl had this to say about that:

    Beth, I am one of the more unfortunate ones in that I have not ever been given so much as an inkling that I was ‘in the clear’ since my diagnosis in very early 2003 yet here I am. Alive and kicking! I am living proof that, in spite of the most dire of circumstances, it is possible to ‘live’ with cancer. Just how much longer I will go on is the unknown and I have learned not to fear the unknown.
    Maybe it is the knowledge that I have been living with this disease – either my late husbands, or my own – since 1978. Some record eh?
    I thoroughly enjoyed your post, and the comments. There is still much to learn. My love and gratitude.

  17. Lisa Ellis had this to say about that:

    Although my treatment for breast cancer was easier than some others, just surgery (bilateral mastectomy and hormonla treatment), I have permanent side effects. Psycological burden? Heck, after three years I am still dealing with the physical ramifications of having cancer.

  18. The Cancer Assassin had this to say about that:

    I just want to say that I loved this post and I will be following your blog from now on. Much sisterly love and health to you.
    Laura

  19. Beth L. Gainer had this to say about that:

    Hi Nancy,

    Thanks for your comment. When I read your posting, I felt like I was once again looking into the mirror of medical testing. As much as we like to think we are done with cancer, we never are. It is so hard to keep one step ahead of those inner demons, especially since we are always reminded by our visits to the doctor and tests.

  20. Beth L. Gainer had this to say about that:

    Cheryl,

    Thank you for commenting, and I appreciate your candor. I think we each learn to handle whatever situation we have found ourselves in. As the saying goes, tomorrow is promised to no one. Nobody really knows when or how they will die.

    Dealing with cancer as long as you have (collectively you and your late husband’s) has not been an easy road, I am sure.

    I am sending love and gratitude right back at you!

  21. Beth L. Gainer had this to say about that:

    Lisa,

    First of all, thank you for reading my posting and leaving a comment. Truth is, nobody’s cancer is easier or more difficult than another’s. Each experience is uniquely different, and that is why we have so many wonderful cybervoices out there. Each person’s message and story are equally valid.

    I just tackled the psychological burden in this posting, but I, too, and still dealing with physical aftereffects. I’m sorry for all you’ve been through. Cancer is a tough one.

  22. Beth L. Gainer had this to say about that:

    Hi Laura,

    Thank you for your kind comments, and I’m glad you will be reading my blog regularly. I’m going to be checking yours out soon!

  23. Pink Ribbon Blues had this to say about that:

    This is such an important post, Beth. When you write: “I realize that the depth of my cancer-related sorrow and grief is counterbalanced by the depth of joy I experience in these moments….every day.” You show that cancer is multi-faceted and complicated, evoking fears and opportunities to appreciate life. It’s a BALANCE that allows for a full expression of feelings. You didn’t bury the bad to try convince yourself of the good. Thank you for bringing that balance into the public discussion.

  24. Katy had this to say about that:

    enjoyed reading this post. my mom is a survivor and i was her main care taker. even i experience very similar psychological burdens you mentioned. glad to know im not alone.

  25. Beth L. Gainer had this to say about that:

    Hi Gayle,

    Thank you so much for your nice comment. Yes, cancer is so very complicated and multifaceted. I think that’s why we cancer bloggers never run out of things to say!

    Thanks again for reading and commenting on my posting!

  26. Beth L. Gainer had this to say about that:

    Katy,

    I’m so glad you enjoyed reading my post. I’m so glad your mom is doing OK. I can understand you having some psychological repercussions, as well, as caretakers are often affected — in a major way.

    I think it’s wonderful that you cared for your mom.

  27. chemobabe had this to say about that:

    i love this post, beth. it so clearly explains the ways in which we are never “done” with this disease.

  28. Liz had this to say about that:

    Excellent and thoughtful article. I am in a support group for women living with metastatic cancer, and I plan to share this article with them. It’s right on the money.

  29. Cindy had this to say about that:

    Thank you for your post. I’ve been a “survivor” for 10 years, also. I had breast cancer twice and went through chemo twice, radiation once, and had TRAM flap reconstruction. My abdominal scars still hurt, I have lymphedema, I have osteoporosis (and have broken my left leg twice in 5 years). I take tons of medicines with horrible side effects.

    I am so exhausted by the people who say “at least it’s not cancer” as I trudge through my multiple appointments, imagings, medications, etc. It’s ALL cancer.

    I, too, was healthy and strong before cancer. I’m FIGHTING, but I need people to recognize that I’m also MENTALLY and EMOTIONALLY exhausted.

    I just started looking on FB for people and blogs that were empathetic to the TOTAL experience — not only the happy, pink parts — so glad I found you and your blog.

  30. Beth L. Gainer had this to say about that:

    Chemobabe,

    Thank you for your support and comment. We are never “done,” are we?

  31. Beth L. Gainer had this to say about that:

    Liz,

    Thank you for reading and commenting. I appreciate your sharing my post with others.

  32. Beth L. Gainer had this to say about that:

    Hi Cindy,

    I’m glad you found me, too!! You’ve been through so much; people who are not in the cancer world really don’t “get it.” They think that as long as we are “cancer-free,” it’s OK. But all the physical and mental suffering that we must endure means we are never free of suffering.

    Thanks for your candor and for sharing your story with me.

  33. Stacey had this to say about that:

    Beth, I’m just catching up and so glad I didn’t miss this post. It seems so much to bear, doesn’t it? As if surgery and treatment weren’t enough, we need to deal with everyone else’s expectation of being “done.” A term that makes me bristle. You express it so well and it is great having each other. We know the fear never goes away, simply because the threat never leaves, but those that haven’t lived it can’t understand it.

  34. mybreastcanceranswers.com had this to say about that:

    This is an amazing article….across the pond in Florida, USA I am a nurse practitioner who advocates for breast cancer patients. I created my site because I thought diagnosis was overwhelming for most women and I wanted to arm them with practical, easy to read info as well as the questions they needed to ask, but didn’t know to ask. I think the psychological aspect of breast cancer is so often underlooked yet it is so important.
    Heather Flanagan, ARNP
    http://www.mybreastcanceranswers.com

  35. Beth L. Gainer had this to say about that:

    Stacey,

    Thank you for reading and commenting on my post. Yes, the whole “done” thing really gets to me because we are never ever done with cancer. Or is it that cancer is never done with us?

  36. pinkunderbelly had this to say about that:

    Wow, what a great post. I’ve been grappling with this issue myself, and I really like and appreciate how you so clearly described the difficulty. I agree — ICU after the DIEP was indeed sheer anguish! And the coming to grips with the new torso is quite tricky, too.

  37. Beth L. Gainer had this to say about that:

    Hi Heather,

    Thank you for your compliment and for reading and commenting! I visited your site and am very impressed. I think it’s great how much you are striving to help people with breast cancer. There is a real need for such a support network.

  38. Beth L. Gainer had this to say about that:

    Pinkunderbelly:

    Thanks for reading and commenting. Isn’t it amazing how bad ICU can be? It’s easy to lull ourselves into false complacency that the hospital will take care of us, but in reality, only we can really take care of ourselves the best.

  39. WhiteStone had this to say about that:

    Somehow I never liked the idea of “cancer warrior” for it seemed more like “bravado” than “victory”. It seemed like putting on a false front, a false face, that would (could) do nothing to convince cancer cells to give up and die.

    In my case, stage III-C ovarian cancer statistics don’t leave a lot of hope for “cure”. Pretending to have a warrior mentality about it all didn’t seem to me to be something that would increase my chances. I just hunkered down, groaned with the pain, rolled with the punches, kept getting up and putting one foot in front of the other. It was more like “don’t give up” than “battling valiantly onward”.

    Nevertheless a thought came to me one day. It was this…”We’re in a battle and there is shrapnel all around.” That is how it seemed. Deadly shrapnel exploding from all directions. Thank God, things are more quiet now. But the fear is always there.

  40. Beth L. Gainer had this to say about that:

    I totally agree that the warrior analogy doesn’t fit. And yes, “shrapnel” is so appropriate. I hope you are doing better. Thank you for reading and commenting.

  41. Renn had this to say about that:

    I am still in the thick of my cancer soup, but one day I hope to be in your shoes, trading surgeries for uncertainty. Because I know we are never “done.”

    Ten years is an incredible milestone. I imagine it’s hard to celebrate. You’ve done a great job of expressing the triggers and fears that make up some of the baggage of life post-BC. Thanks!

  42. Beth L. Gainer had this to say about that:

    Thanks, Renn, for your comment. I also hope that one day you are finished with cancer treatments, though, as you know, one is never really “done” with cancer.

    It is really hard to celebrate these milestones, but all we can do is the best that we can.

    Hang in there and keep fighting….

  43. Jody had this to say about that:

    Ah Beth,

    Thank you for a wonderful post. Cancer in the psyche is the equivalent of serving in the army for us. We’ve seen death (my parents, friends I went through treatment with) and faced our own mortality. We faced dramatic alterations in body image and altered use. With chemo, we’ve been sicker than sick. Even 13 years later I still hear echoes.

    Heartfelt congratulations on your survivorship and wonderful work.

    Warm wishes,
    Jody

  44. Beth L. Gainer had this to say about that:

    Thank you for reading my posting and commenting, Jody. I’m so sorry for your losses; it’s overwhelming, isn’t it? I am grateful for your survivorship, too.

    — Beth

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