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Are You Still Struggling With the Loneliness of Life After Cancer?

My response: "Think relaxing thoughts. Be your own best friend. You have to be alone sometimes."
Her response: "Yeah, I actually tell myself that a lot cuz of eighth grade when I didn't have friends and that's what you told me."
My response: "What did I say?"
Her response: "That I have to be okay with being by myself sometimes."
Unlike solitude, which we choose, loneliness is a force we have to work with or risk allowing it to swallow us up. I guess I made a point to teach my daughter about being okay with it once and a while because of experiences in my life.
I grew up in a small Cape Cod house with two parents and eight brothers and sisters. Despite the obvious noise and activity, I often felt alone, especially during my teenage years. I was the oldest, a girl (followed in birth order by four brothers) and my youngest sibling was 14 years younger than me. I often existed in a parallel universe very different from the one inhabited by my siblings.
In my adult life, the most lonely experiences accompanied birth and cancer. The day my daughter was born, I was ill all day and ended up in the hospital severely dehydrated. Dehydration led to labor and she was born at 11:46 p.m. Although I was probably food poisoned, my doctor couldn't rule out infection. To protect my newborn, I wasn't allowed to touch or hold her. Instead, I spent the night in a room, alone, without my new baby or my husband (who I encouraged to go home to rest.) To this day, almost 18 years later, I remember laying there and thinking, "This certainly didn't go as planned." I expected to meet my daughter and have her with me. Instead, my new family was separated and I was alone.
The second experience came after my mastectomy for breast cancer. After six and a half months of diagnostic tests, doctors visits, and finally my surgery, I was bowled over by the emotional impact of it all. My family, so very relieved that I was alive, was happy to move on and put the whole cancer thing behind them. I found myself again living in a parallel universe very much apart from my family. It was a horribly lonely place to be.
The cancer-induced loneliness lasted an entire summer. My wonderful oncology therapist helped me tremendously by letting me express my sadness and building anger. With her help, I was eventually able to make my family understand that I needed them to be where I was - that cancer was not yet over for me.
Life teaches us that we have to handle being by ourselves sometimes. It's an important lesson to learn, but cancer-induced loneliness is bigger than that and not something we should accept as another loss of cancer. If you are finding yourself still struggling, while others around you are only too happy to put your cancer behind them, get support anywhere you can. Seek out others who understand how you feel and with whom you can share your feelings. My therapist helped me carry the overwhelming weight of my loneliness that summer. I shudder to think what would have happened if I had been forced to carry it alone.
Have you or are you still dealing with the loneliness of life after cancer? What has helped you deal with it?
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Comments
great post!
Debbie, this is a great post. It speaks to that unspeakable experience of everyone around us moving on while we are still stuck in the silence of cancer. I love your line,"I was eventually able to make my family understand that I needed them to be where I was - that cancer was not yet over for me." Can I ask how you did that? That is the tricky part!
-Renn
Tricky, and Very Painful
Renn:
It was very tricky, and painful. I think the most important thing I did was not be "stuck in the silence of cancer." By talking, talking, talking with my oncology therapist, I was able to eventually talk with my family about my needs. She also helped me not feel guilty about having to bring them back to where I was. Well, I still felt a little guilty, but she taught me that what I was feeling was normal and a necessary part of my healing.
The irony about that time in my journey was that it was when I felt the most separated from my family, but had the most outside support. It was that support that gave me the strength to work through it and hold on until things got better.
Now, I still feel some disconnect between myself and my family. I am definitely living as a cancer survivor and they are definitely happy to put that all in the past. But the gap between us isn't the chasm it used to be.
Are you still struggling with the loneliness of life beyond cancer?
Survival > Existence,
Debbie
GREAT Indeed!
Cancer is a solo journey. And at the five year post surgery mark, it's over for everyone, but it's not over for me. Today was proof. It was oncology follow up day. There is a photo on my blog page. A picture is worth a thousand words. Yes, I feel very alone unless I'm with a "sister" ..... I believe that's why the twitter community and the bloggers have such a "sacred" bond with one another. We all "get it." ..... Timely entry for me. Thanks, Deb.
AnneMarie
It's Not a Completely Solo Journey, Because I Know You
AnnMarie:
I so get what you went through today and I’m so sorry you felt alone. You’re right that cancer is never over for us, which puts us in a very lonely place sometimes. Although I am a huge believer in getting support and finding “sisters” who get it, we all still have moments when we have to face cancer alone again. It’s a struggle, but not completely new to me, because of my earlier experiences being alone. As I reminded my daughter, and I often remind myself, sometimes you just have to be okay with it because it’s what we are feeling right now. I was so moved by your post and the fact that you went home and wrote in such a real and honest way. What a truly beautiful way of beating back the loneliness.
Thank you for being one of my sisters I share this bond with, it means the world to me!
Survival > Existence,
Debbie
AnneMarie, I need to read
AnneMarie, I need to read your blog post!
Debbie, I'm still in the trenches, not done with surgery yet (mine has been a protracted journey, like many), but I find that people (friends and family, not all, but some) think that because I found it early and had a BMX that I am "cured" now and my recon troubles are my only concern. I have been surprised at how readily people retract back into their comfortable world. Thank goodness for blogging! ;-)
It's really a much bigger problem than just me and my immediate circle. My solution has been to blog about it.
Like You, Blogging Helps Me So Much
Renn,
I guess it's all about trying to find solutions. I also get so much from blogging and these discussions. Thanks for sharing and I'm thinking of you. I remember the trenches and feel for you.
Survival > Existence,
Debbie
Thanks, Debbie
I have a wonderful and supportive family. I see a therapist a couple of times a month and I have a yoga instructor who provides me with "the best hour of my week." There are times I need to be alone or be in the company of a sister (who is not also my REAL sister or my mother, either!). That is how the blog came about and the volunteering that was borne of the blogging and I treasure each and every person I have met along the way. Thank you for welcoming me into the blog world and into the twitter family! This makes me realize I'm truly NEVER alone unless I choose to be..... there's always someone with whom I can connect since our gang is literally all around the world!!! Your kindness means more than I can express. Happy you are part of my life!
You're So Very Welcome
AnneMarie:
Sounds like you've found many of the same gifts of cancer that came to me: yoga, giving back, writing and meeting (literally and figuratively) such wonderful people. There will always be downsides to being a cancer survivor - it's not easy - but I'm so grateful for the unexpected gifts.
I'm so happy we found each other!
Survival > Existence,
Debbie
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