Driving the Cancer Bus: Cancer and PTSD
It’s an honor for me today to feature a special guest blog by Diane Haber, founder of The Renewal Center – A Wellness Oasis for Cancer Survivors, a center which focuses on people who have finished day-to-day medical treatment and are trying to move forward with their lives. Diane, herself a cancer survivor, is a licensed clinical professional counselor.
As so many of us know, the end of treatment is not the end of dealing with healing. Cancer survivors have unique issues and face them at different times. When patients are in treatment, they are trying to survive and can’t really feel the full emotional impact that being diagnosed with cancer involves. Once patients have completed treatment they are ready to begin dealing with the emotional aspects and other issues of cancer survivorship.
In this special guest blog, Diane takes us on a journey on the cancer bus through some of the complicated emotions and feelings we may experience after treatment ends.
What do cancer survivors and soldiers have in common? Is the commonality the topic of war – combat, war zones for soldiers and for cancer survivors – war of fighting the cancer cells, fighting for your life?
The connection is post-traumatic stress disorder (PTSD) – a condition that sometimes occurs after experiencing a frightening or life-threatening event. It’s been estimated that more than 40% of cancer survivors fit the criteria for PTSD.
People suffering from PTSD develop certain symptoms such as:
- fearfulness
- helplessness
- reliving the experience or continuously thinking about it (nightmares and flashbacks)
- avoiding people, places and events that bring back cancer-experience memories
- being irritable
- insomnia
- angry outbursts
- strong feelings of guilt, hopelessness or shame
- trouble concentrating
- uncontrolled sadness
- avoiding activities once enjoyed
So you look at this list and say of course I’ve experienced many of these symptoms. It wouldn’t be normal if you hadn’t. Who hasn’t? You’re right. Many cancer survivors experience these symptoms but to be diagnosed as PTSD, the symptoms have to last for at least one month and cause significant problems in your life. PTSD can affect every relationship you have.
I am a cancer survivor. When I was first diagnosed my focus was on surviving. I swept every other emotional aspect away. More than a year later I realized the emotional toll that cancer had taken. As a licensed professional counselor I decided to found The Renewal Center – A Wellness Oasis for Cancer Survivors to help others and myself. We were given the opportunity to use a community event room in a medical office building for our cancer support group. Since we had no real operating budget, it seemed a good choice. But was it? I was concerned about the negative effect of having our organization in the same building that some of our cancer survivors had gone to for chemo and doctor visits. Would walking into the building trigger a flashback to other negative times? After weighing the pros and cons, we decided to go ahead and use the room. We tried to make the room as homey as possible and as different from a medical office as we could. Of course, we had to remove everything each time we used the room since other groups also shared the space but it seemed worth it. For some cancer survivors, we were able to diffuse the experience of walking into the building and turn it into a positive.
For the last three years, we have taken part in a fair in our community to help people find resources in the community. Each year a woman comes to our booth and when I tell her about our organization she adamantly tells me she doesn’t need any help dealing with her emotions. She is just fine. She doesn’t want to talk about “it” – she can’t even say the word cancer. She is fine, just fine. After all, her cancer diagnosis was years ago. Are you getting the picture? When I try to tell her that her inability to speak about “it,” is one of the reasons she does need the support of our group, she responds, “she is fine, just fine.” This year when she came over to the booth, I smilingly supplied both sides of our dialogue since it doesn’t seem to vary from year to year. She is just not ready.
The effects of PTSD are long lasting. As a matter of fact more than ten years after being diagnosed, nearly four out of 10 cancer survivors are still troubled by PTSD symptoms. However PTSD is treatable. And it is important to get help. But don’t try to go through it alone. Support groups, such as ours, provide a safe place to deal with the emotional aspects of cancer and share talking about feelings, connect with others and cope with fears. If necessary, medications can also help people manage symptoms. Individual counseling is another way to go. Treatment helps you gain a sense of control over your life and for some, it may involve more than one type of therapy.
Once you battle cancer, it will always be part of your life. One of our participants referred to it as the cancer bus. She didn’t want to be on the cancer bus any longer.
I tried to explain to her that she will always be on the bus but it isn’t like the Sandra Bullock movie Speed where you are on an uncontrolled bus. You can get your life back and under control. You can learn ways to cope if symptoms return and feel better about yourself. You can be the driver of your bus.
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The Renewal Center, a 501(c)3 non-profit organization, enables cancer survivors to connect with others and build a supportive community. All services to cancer survivors are free of charge.
Visit http://www.therenewalcenter.org to learn more
I love this topic. I’ll just keep on driving my bus. It’s a great way to look at the whole ordeal. Thanks for bringing the Renewal Center to our attention. xo
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You keep on driving that bus Jan x
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Such an important topic, and I wish I had found something similar to the Renewal Center when I finished treatment and needed something. I did find a few options, actually, but they either occurred while I was working or had a wait list. The blogosphere ultimately served as my Renewal Center. I say it so much, I’m beginning to sound cliche, but it’s true!
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I think I might just join you in that old cliche Eileen.. so true!
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Agreed! 🙂 Going online was a huge help.
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Such a relief to read this today and know that I am not alone in experienicing many of the syptoms of PTSD listed here.
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Wonderful post on a topic that doesn’t get enough attention. PTSD is real, especially among cancer survivors. This post really resonated with me.
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Me too Beth! But for a long time I didn’t know the things I was feeling fell under the banner of post traumatic stress!
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dear marie,
thanks to you and to diane haber for this post on a very disturbing and prolific effect that being diagnosed with cancer imposes upon us. PTSD has had a significant effect on both hugh and me, and i feel guilty that as a nurse i wasn’t fully connecting just how devastating it has been. we have experienced it not only from our indiviual cancers, but also on behalf of one or the other of us. for example, i recently had a new scare about the possibility of a new cancer. hugh was not seemingly himself, and i noticed he seemed to retreat, to be distracted and irritable for days. i surmised he was worried about me and decided to let him just process quietly within himself until he felt ready to talk. but here’s the thing; he was so overwhelmed and confused he wasn’t able to talk, not even after we found out that everything was okay with me. i was feeling quite hurt that he wasn’t expressing relief about my dodging another bullet. but later, when he could talk about it i realized that his own PSTD (which has gotten a bit better, but is still there) was triggered and layered upon my own. i have also had recurrences of my own PTSD when it appeared hugh’s myeloma might have been coming back. argh!!! it’s so complicated. but reading about the renewal center has been so helpful. we are going to contact our cancer nurse navigator to help us connect with resources to help us both. so, once again, thank you marie, and thank you diane.
love, XOXO,
karen, TC
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Hello and thank you. I’ve been needing this type of support. I am a survivor and volunteer at Michelle’s Place in Temecula, CA. The word “survivor” has always been an issue for me. Other “survivors” I’ve spoken with seem to have the same issue. I think that everyone of us is a survivor, in one sense or another, until the day we die. But there are so many other aspects of being a “post-cancer-patient”. It’s never over, but we can learn from each other to help us along our way.
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Hi Debra, thanks so much for taking the time to comment and add your thoughts to the discusion.
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I never refer to myself as a survivor……. After my breast cancer, I developed lymphedema in my right arm.. When this happened, it really put me “on the bus” forever. It is a daily reminder of cancer and as I do my manual lymph drainage massage, my mind is always on cancer issues.
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Hi Sandy, lymphedema is a constant reminder 😦
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I recognize these some of these symptoms in myself too. They aren’t to the point of ruining my day (though certainly my daydream), but they happen and it’s hard to express that to others around me without ‘bringing up a depressing topic’ again. So while I’m sorry to know so many others feel the same, I’m still glad not to be alone. Very good post. I hope those who need help are inspired to find it. ~Catherine
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I found this blog thru an online search. I wanted to know if it’s normal to feel a detachment or loss of interest in romance or a dating relationship while undergoing breast cancer treatment. I was diagnosed last June, 2016. I have undergone surgery and chemo, and I’m completing radiation therapy. I had a new relationship just developing when I was diagnosed. My sweetheart has been so supportive, but he lives in another country and can’t be here with me right now. However, he calls and texts very frequently, to keep up with me and to offer support. More and more I feel detached and struggle to stay interested in the plans to visit him or have him visit me. I couldn’t understand what was wrong with me. Now I realize that this really is normal, symptoms of PTSD. Now I will go find help to recover emotionally. Thanks so much!
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Esther, I am so pleased that you found resonance in this post. Wishing you continued healing and support as you journey beyond breast cancer.
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