I’m currently working on a very exciting project with a fellow cancer survivor, Jackie Poper. It’s a teleclass and lecture on one of the most difficult transitions in life: going from cancer patient to cancer survivor, and trying to find some way to recover, physically, emotionally, and spiritually. Look out for it at the end of 2013.
Most of my readers know that when I was 16 years old, I was diagnosed with Hodgkin’s disease. I was told initially that I would need a year of chemotherapy and some radiation. Because I responded so well to treatment, I had to undergo only seven months of chemotherapy and didn’t need radiation at all. As you can imagine, this was great news, and everyone-including me-was happy about it. The cancer was gone sooner than expected, and I was given the official “okay” to go back to my life.
Time to celebrate and move on, right? At least that’s what I was hoping, but it didn’t work out that way. I was glad the cancer was gone, but instead of feeling elated, I was like, “Now what?” How was I supposed to go back to school and face all the social pressures teens experience with no hair, a heavier body weight (I’d gained weight as a result of my treatment), and a muddled sense of my own identity? Everything had changed, and I had no idea how to get back to “normal.”
I looked different. I felt different. Yet I was told to “move on.” Certainly everyone around me had done so, and they wanted me to as well. But I didn’t know how. I was confused and had no one to talk to. I felt guilty holding on to my cancer experience when everyone else was elated at my “survival,” but when it came down to it, I had nothing else to hold on to.
Most survivors experience some version of this, and the easiest way to describe it is to call it post-traumatic stress and depression. Similar to what a victim of a violent crime experiences, a cancer survivor struggles to make sense of what happened to her. While we’re actually going through the battle, we have little time to reflect, or to even bring our feelings to a conscious level. We’re too busy going to the hospital and getting our wigs fixed and figuring out our medications and finding something we can eat when our mouths erupt in sores. We may cry on some nights, and feel lost and confused at times, but that doesn’t even come close to processing the experience in its entirety. Most of us don’t even know how to begin processing it.
Fortunately, the medical field is just starting to recognize the seriousness of “survivor stress and depression,” and cancer centers and hospitals are now putting into place several programs to help people cope. When I went through it, however, I had access to none of that, partly because neither my parents nor I thought I needed it. I lived in a family where expressing emotions just wasn’t the norm. A product of another generation, my parents believed that you just “bucked up” and went on. Why are you making such a fuss? they would say. You’re alive! You’re well. Be grateful! You can go on with your life now!
I tried to play my part. Not only did my family expect it, but my friends, teachers, and doctors did, as well. Oh, there’s the girl who had cancer and beat it! Their eyes would peer at me with an almost morbid curiosity. How does she look now? The pressure was nearly unbearable. I felt judged on how well I was surviving. Everyone wanted their happy ending, but I had no idea how to give it to them. It felt like a race. How do I get to “normal” from here?
I had lots of support from my parents and friends while going through treatment, but I never attended a support group, never talked to a counselor or social worker, and never connected with other kids my age who had survived cancer. Everyone around me just wanted me to move on, but I had all these overwhelming feelings and didn’t know what to do with them. So I turned to the one thing I could control-what I ate. What a relief. Finally I could feel again some sense of power over my own life. As I got into it, the weight started to drop off, and I regained my figure-and soon became even thinner. My hair grew back-though way too short for my comfort-and together with my new figure, I felt attractive again. And of course, I loved the attention I got from that.
Of course, my elation was short-lived, because I never really dealt with my cancer experience. I just hid behind the problem. Controlling my food and weight (to the point of anorexia) gave me a sense of false power, which distracted me from the “real” pain underneath. In truth, I never really dealt with it completely until I started Cinco Vidas three years ago-almost 18 years after treatment! I started this blog, wrote my book, developed a skincare line to help with compromised skin, and reached out to help other survivors. Back then, however, all I ended up with was an eating disorder-my way of coping with all the overwhelming feelings-which of course, only complicated things.
I’ll talk more about my recovery in future posts. In the meantime, stay tuned for our upcoming teleclass which will provide you with many tools, much support and resources to help you transition from cancer patient back into living your life fully.
Have you experienced stress, depression, or other setbacks during your recovery from cancer? Please share your story.
Photo courtesy the Enzo D. via Flickr.com.
Great article Britta. I am a breast cancer survivor and I agree with what you say. When you finish treatment and you are well again it seems everyone wants to forget or move on as it’s over and done with. I don’t believe you can just do that. Being told you have cancer is a profound experience. It shapes you and your future in terms of making the most of the time you’ve got!
Hi, Ruth. Thanks for your thoughts. It’s amazing how many survivors feel this way. We need to spread the word, as many survivors still think there’s something wrong with them if they don’t feel instantly great after treatments are over. We can help each other to get through this!
Thank you Britta for sharing your “after” treatment story. I was lucky not to lose my hair, but every pain or twinge scared me for the first year. Maybe it was a form of PTSD (a thought from another survivor), I never thought about that. Finally my oncologist set me straight, after I called her about pain in my ankle — she said, “sometimes a pain in the ankle is just a pain in the ankle. Nothing more.”
I have since calmed down and focused on living and being grateful.
Hi, Inge. I know exactly how you felt, and yes, I think it is like PTSD. Sounds like you have made it through and you’re on your way to full recovery, though I don’t know if that fear every really goes away completely. I practice facing the fear every day, and take proactive steps to protect my health. Regaining control over your own destiny can help—and I have found that making meaning of my experience has also really helped me to heal. Light and love to you!
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I googled “cancer treatment over now what” . I was diagnosed with breast cancer in April and had my last visit with the my cancer dr today. He said see you in 3 months. Very anticlimactic….maybe a list of dos & dont’s would be helpful? Certainly those guys see 100’s of us every day, they must have some tips for us like don’t drink this or don’t eat that so we don’t get this awful disease back! I like wine, my sister does not drink a drop of anything and we were diagnosed a week apart, she lost both breasts, while I had a lumpectomy, (24 weeks of chemo and 37 rounds of radiation for me) 3 weeks of chemo and no radiation for her. I am trying to be excited that maybe it is over, but is it?
Thanks for sharing your story. I’ve just moved into remission from my Hodgkins and find myself often guilty and sad and you’ve summed up these feelings really well. Cheers Britta.
I am two treatments/ one month away from being done with chemotherapy for my Hodgkin’s, and I am panicking. This post really struck a chord with me. I’ve been feeling especially emotional and anxious lately, and it doesn’t make me feel any better when someone tries to reassure me with “but you’re almost done! You can get on with your life!” I almost feel like I need more time (but not more chemo) to process everything before I’m expected to just jump back into life. Like other comments have mentioned, the past six months have been all about doctors, nurses, hospitals, chemo, pneumonia, side effects. Basically, survival. I need a minute to process what all this means in the larger scheme of things. What is my life now?
Wow – finally someone who know how I feel. I am a six year esophageal cancer survivor.
After surgery, chemo and radiation were done I spent 18 weeks getting weekly infusions of magnesium for a visiting VON. She would come on Tuesday and hook me up, then return Thursday to draw blood to make sure the infusions were working.
When all was said and done, no more weekly trips to the doctor, no more visiting nurses, I felt abandoned. Insomuch as I was happy it was “over” I had no idea what to do next. For over a year, my life had been doctors, nurses, rad techs and hospitals.
I didn’t know what “getting back to normal” was because I have no normal anymore. With most of my digestive tract missing normal means what will work today?
I envy survivors that can return to their BC lives and get on with it.
Even now, 6 yrs later I would just like to have one day when my food goes down and stays down. But then again, the day it does I know I am no longer on this earth.
Thank you for writing about this. I have been reluctant to do so on my own blog. So many friends and family are under the impression that life is the same…little do they know.
Thank you everyone for sharing your experience around this subject. @Suzzann – that is great to hear about “survive and Thrive”, it is no needed. Keep me posted and I can help you get the word out. @Sarah – it is great to hear that your transition went so well and I do believe that not everyone has a tough time. Its a beautiful thing.
I look forward in writing more about this subject and in sharing more about my upcoming teleclass with you all!
Much love,
Britta
I am sorry you are having such problems.
I must be one of the lucky ones. After finishing up with my treatments I felt incredibly elated, grateful and happy to finally have a clean bill of health! Cancer took/takes up so much time both physically and mentally that when treatments were over it was the greatest feeling in the world to move on! I made it a point to not let it consume me anymore because it was time to start living life again! Celebrating!……Finishing treatment was like a graduation,one of the best feelings in the world….onward and upward.
Thank you for highlighting this difficult post -treament phase – something I struggled hugely with and was the very reason for starting me on the path to blogging with Journeying Beyond Breast Cancer. While the treatments for cancer targets the disease quite specifically in the body, the experience does not leave the mind, the spirit or the emotions untouched. I will be looking forward to seeing how your new project develops!
I am so incredibly grateful that you are addressing this issue. I had no clue that I’d be anything but grateful and happy following my cancer treatments resulting in a clean bill of health. Two years later I’m still going through emotional difficulties associated with colorectal cancer. More power to you!
This is exactly what I’m dealing with. I was diagnosed with breast cancer in August ’08. A week after diagnosis we found out I was pregnant. I started chemo in my 2nd trimester and so far, 2 1/2 years later, I am still taking treatments weekly. We are hoping I am reaching the end of my treatments, but I find myself panicked. I haven’t known anything else and the past 2 1/2 years has aged my body at least 10 years. I don’t know how I’m going to be expected to return to work soon when what I can do is so limited now. All I have wanted is to get to the point where I could finally stop treatments and now the thought of what’s expected of me really makes me anxious.
I had thyroid cancer at 19, nearly 30 years ago. It took me a long time to realize how miserable I was. Then in 2007 I was diagnosed with breast cancer and decided that I wasn’t going to let cancer steal any more of my life. I completely agree with you on this.
Britta,
WOW! You have totally “hit the nail on the head!” I too, wrote and spoke about this exact same topic a few months ago. With cancer survivors now living longer and being diagnosed younger, there’s a limbo for some that really needs to be addressed. I have been working diligently w/our local Cancer Center in my hometown. I have FINALLY got through to some in the medical community that this MUST be addressed and we need programs in place. I’m happy to say, it’s now in the making! Through community outreach programs and a hospital/cancer center that has finally “seen the light” we’re moving forward with a Survivorship program and a group appropriately named “Survive and Thrive.” I’m looking forward to further posts from you on this topic!
Warmest Regards,
Suzzann~
Oh, this sounds like a wonderful project. There is truly a need. I am presently struggling a bit with this moving on concept. Thanks so much!
Thank you for a great piece. I had a stem cell transplant almost a year ago after 3 different types of chemo were unsuccessful at treating my non-hodgkins lymphoma. Moving forward sometimes feels harder than fighting cancer felt. One day a time.