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

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For almost 18 wonderful years, I’ve had the privilege of building a close relationship with my daughter. Whether in person, or by phone or text, we like to talk about everything and anything. Today she texted me to say how much she missed her friend who just transferred to another school. She was “lonely” and “bored” without her. 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 in 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 after cancer treatment, 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?

Image courtesy of Artúr Herczeg

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Comments

Renn's picture
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

Debbie's picture

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

AnneMarie's picture
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

Debbie's picture
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

Renn's picture
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.

Debbie's picture
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

AnneMarie's picture
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!

Debbie's picture
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

Flossie Friedman 's picture
Ready, but not really ready to move on

I’m recovering from my exchange surgery now, dealing with the fact that it isn’t the breeze I thought it would be. I have days where I really do feel like it ‘s behind me (I love to say that cancer lost its battle with me!) , but there are days like today where I hurt and am dragging and just feel like everyone around me thinks I should be back to normal. There’s a part of me that feels like I’m letting them down. My husband says and does all of the right stuff, but I feel like I’m just a drag on him.
I think that what gets to me is that I will never be the same person I was before cancer, but only people who have had cancer “get” that. Sometimes I feel so up and positive and other days not. I wonder of part of that is the Farosten (like Tamoxifen).

Debbie's picture

I Completely Know What You’re Going Through

Hi Flossie:

I lived through everything you write about. I too didn’t appreciate how difficult recovery from my surgery would be. I also had bad and good days. And, I also experienced that horrible disconnect when everyone wants to get back to normal and you’re not there. Unfortunately, most of us (including me) reacted with guilt about that, instead of realizing that we are exactly where we should be given all that we have been through. I did a tiny bit of research and found that mood swings can be a side effect of Farosten. If I were you, I would talk to my doctor about this to get more information. Keep talking to others who “get it.” It’s the best medicine I know for working through your survivorship.

Survival v. Existence,

Debbie

Facing Cancer Together's picture
Lonely during treatment

It’s such an interesting perspective, Debbie. I can only imagine how it must have felt after having given birth to your daughter. Personally, I felt lonely during my chemotherapy – I felt separated from those around me, even my husband at time, and it was hard to realize no one could take my place. The journey was mine alone, and that itself was difficult. (And can still be difficult.)

~Catherine

 

Debbie's picture
The Loneliness of Cancer

Catherine:

There’s so many journeys in life we have to walk alone. The loneliness of cancer initially took me by surprise, but it helped so much to find others who understood.

Survival > Existence,

Debbie

 

Robyn's picture
The Loneliness of Cancer

I am so glad I came across your blog. I was told No Evidence of disease last month. I am happy and so is my family, but the same thing they now are glad to put it behind them. I still see and feel it everyday. Somedays I’m up and at running around other days I’m so tired and all my bones ach. I feel like I’m more of a burden now that I should be me again but I just can’t find me. I think I cry more now then when I was going through all the diagnostics and treatment. where do I go now….

 

Debbie's picture
Go Wherever You Can to Get the Support You Need & Deserve

Hi Robyn:

Where.do you go now? I strongly suggest you go wherever you can to be with other survivors in a supportive environment. During most of 2009 I felt exactly as you do now. Unfortunately, what you describe is a normal part of the after-treatment readustment that most of us go through. I worked through it with the help of a therapist, going to support groups, and finding other activities that helped me build my supportive community. Once you realize that you are truly not alone, you begin to heal from the emotional trauma of cancer.

I cried more during this period than I did during treatment too. It’s very hard to find yourself after going through a traumatic experience. You will get there, one day at a time. Have patience and get all the support you can to help you get there.

Stay in touch and all the best to you.

Survival > Existence,

Debbie

Mary Cook's picture
Your blog

Thank you so much for your blog. I couldn’t figure out why I was feeling so down. I had a mastectomy four months ago and was lucky enough not to have chemo or radiation. Someone said to me “you must feel like you won the lottery” … and yet all I feel is sadness. I am now realizing that it is survivor’s guilt and the loneliness as you said that my family is moving on. Thank you for the simple way you have described it and posted it for all to see … it is wonderful to know I’m not alone.

 

Debbie's picture
I’m So Happy That You Know You’re Not Alone

Mary:

Like you, I had a mastectomy, didn’t need chemo or radiation, and was constantly told I was “lucky.” Of course, that just caused a great deal of survivor’s guilt, which I wrote about in another blog post. Combine that with the loneliness and it was a very difficult time. The only way I was able to start healing was to bond with other survivors and realize that I was not alone. That’s why I write, so others will have that same reassurance. Thank you so much for letting me know that my post was helpful.

Survival > Existence,

Debbie

Carolyn 's picture
Loneliness of cancer

This blog has been very supportive. I had a lumpectomy and radiation. And was told how lucky I was. 3 months after treatment finished I was diagnosed with a rare uterine sarcoma and early endometrial cancer. Surgery was the treatment. No chemo or rads. Again I was told I was lucky they were found early. I don’t feel lucky. With a 70% chance of recurrence I feel scared.
My family behave as though I ought just move on.
I have a social worker I can talk to. But I still feel very alone.

 

Debbie's picture
“Lucky” & “Cancer” Just Makes No Sense

Dear Carolyn:

Oh my goodness do I know what you’re going through. “Lucky” and “cancer” in the same sentence just doesn’t make a bit of sense and is impossible to compute when you’re going through it. Here’s what I learned: I wasn’t at all “lucky” to have cancer – and no one was saying that I was. I was lucky not to need chemotherapy, but that didn’t mean I wasn’t going through the same emotional turmoil as anyone else facing cancer. You’re not alone. I know exactly what you’re going through and I didn’t feel lucky either. Keep talking to your social worker and reaching out. Communicating and sharing your feelings is the only way to work through the loneliness of cancer.

Blessings to you.

Survival > Existence,

Debbie

Marcy's picture

Desperate lonliness

Thank you so much for your words. I have a type of cancer that is incurable. It doesn’t respond to treatment so I have to live with it the rest of my life, feeling vulnerable all the time. I am a single mom with two young kids. I literally do not have one person in my life that I can vent to. The responses I get are…but you look so good, you should find more joy in life, and you’re so brave. It seems when I pretend that all is well, people gravitate towards me but the moment I show any sign of sadness or weakness they can’t get away from me fast enough. This goes for friends and family. I do not know what to do with this heartbreak. Even the therapist I go to tells me to find the bright side, its all in my perspective. Today, I don’t trust people and to be honest, their hypocritical states of being disgust me. I think the lack of compassion and loneliness will do me in bfore the cancer does.

 

Debbie's picture
I’m So Sorry You Are Going Through This Alone

Dear Marcy:

I’m so sorry that you are going through this alone. I know that family and friends can be dense when it comes to our emotional suffering, especially when they think the worst is over and you should be getting on with life. For me, that was the most painful time and I felt more alone than I ever have before in my life.

I can only offer you what worked for me. I don’t know where you live or what your access to resources is, but please try to connect with other survivors/patients. No one understands like someone who is dealing with the same thing you are. Look for support groups at your cancer center, ask your doctor, talk to a nurse navigator. If there are limited resources in your area, call the Cancer Hope Network. (1-800-552-4366) They will connect you with a survivor to talk to on the phone. Believe me, they will understand and allow you to vent.

Also, if you’re not clicking with your therapist, it may be time to try someone else. I met with a therapist for a year after my mastectomy and she understood and supported me through my intense lows.

You need compassion, empathy and support. Please take care of yourself and go out and get it. You owe it to yourself and to your children to take care of yourself physically and emotionally.

All the best,

Debbie

CJ   's picture
Ovarian Cancer Survivor

This was a great post…I had my surgery in 1999 and was diagnosed with a Stage 1 A tumor that grew to be the size of a soccer ball before they took it out. Fortunately it did not metastasize and I did not need radiation or chemo.That was wonderful news physically, but emotionally I never did find a resource to lean on though I made quite a few attempts before just giving up and telling myself to get over it. I wish I would have found a support group to help as I did not get understanding from my family members who had never dealt with cancer themselves before or since my diagnosis. The worst response was from my daughter (in her 20’s) when she said she didn’t believe that I ever really had cancer or I would have had to have had chemo or radiation. She lives out of state and never had a chance to talk with the doctors, but really that is no excuse for her response. The only reason I can think of for her reaction is that it is more comfortable to live in denial. No one in my family ever celebrated my ten year survival mark which was a big deal for me. Too many people assume that surgery solves everything…

 

Debbie's picture
It’s Not to Late to Find a Supportive Network

CJ:

It’s sad that your daughter (and the rest of your family and friends) can’t be there for you. It’s not too late, however, to find a supportive network. Please visit us again at WWGN and consider sites like WhatNext, the Cancer Hope Network and Cancer Care. Like you, I didn’t have chemo and am well aware that surgery doesn’t solver everything (especially when it comes to cancer emotions.) Keep reaching out for support and don’t give up. We’re out here and we get it!

Debbie

Franchesca Stevens's picture
breast cancer and loneliness

I feel very alone because I don’t know anyone else with cancer and I work a job that leaves practically no time to socialize. I work nights and weekends and cannot go to dances anymore or feel like dating because I am too tired from work and cancer treatments. I imagine this will someday all be in the past, but it is a rough place to be right now. Any advice that you can give me?

 

Debbie's picture
You’re in a rough place, but you’re not in it alone

Dear Franchesca:

I remember feeling what you are feeling right now. What helped me was seeking out any opportunity I could find to connect with other cancer survivors. For me, that meant joining support groups and doing activities at my cancer center. If you don’t have time to meet personally, perhaps you can find online opportunities. To get started, look into the Association of Cancer Online Cancer Resources. Whatever you do, don’t let loneliness swallow you. You deserve support and there are lots of opportunities out there to get it.  Good luck and thanks so much for writing.

Debbie

Gloria's picture
Cancer and Financial Toll

I had a complete colectomy, chemo & rad, permanent Ostomy. In addition to wrapping my brain around all that, I was left in financial ruin. At the age of 55 no less. I take meds for depression & anxiety. I’m working full time living check to check. I feel alienated from my family & friends, the financial toxicity is about as overwhelming as the cancer & surgery. I see a therapist now & then, yet I can’t seem to put myself back together and it’s been 4 years. I feel like giving up. A lot. Anyone else left feeling like this?

 

Help?

My cancer was found fairly early. I had surgery last December and will start my last round of chemo next week. I tested positive for BRCA2 and will have to have a BMX later this year. My kids act so angry–and already saying things like, Well you are almost done, which feels very dismissive. This has been the loneliest journey of my life (I’m single, so no support of that kind. Had anyone else dealt with children who act like my cancer is the supreme imposition on them?

Debbie's picture

Get Support Any Way You Can

Carrie:

I’m so sorry you’re going through this. You don’t mention how old your kids are, but I’m sure they’re hurt and scared too about your cancer. Sometimes people who don’t know how else to react to our cancer, react badly. And kids can be especially selfish when it comes to mom, because we’re always suppossed to be there for them. Please take care of yourself by finding a support group or therapist at your cancer center, or by calling the Cancer Hope Network. You need to speak to someone who understands what you’re going through. Get support anyway you can. You deserve it.

Good luck,

Debbie

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