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Do You Ever Feel Like You’re Doing Cancer Survivorship All Wrong?

Once you’ve been diagnosed with cancer and have been flung into the rigors of treatment, it can sometimes feel as if you’re doing cancer all wrong.

There are unspoken societal messages out there about how a person is supposed to do cancer. And with breast cancer, there are even more expectations, for some reason I’ve yet to figure out. We’ve all heard them, probably many times.

Be strong. Be brave. Fight hard. Stay positive. Keep the faith. Have hope. Wear pink. Eat this. Avoid that. Do this. Never do that. The list goes on and on.

For some, such messages are helpful. For some, not so much.

Why do some find these messages hurtful, or at the least, annoying?

Well, when you think about it, no one really likes to be told how to do things do they? And no one likes to feel as if she/he isn’t measuring up, which is exactly the effect such messages can have on a person who is not feeling strong, brave or positive.

There is no right way to do cancer. There just isn’t. 

When your initial treatment ends, if you’re one of the “lucky” ones and your treatment does have an end, you then enter survivorship mode, often times also referred to as your new normal. Here the waters calm a bit, but on some days they’re still pretty darn choppy.

With a bit of practice and lots of trial and error, you learn to navigate your way in survivorship mode, too. Notice I said navigate your way in it, not through it. It’s not like this mode has an expiration date, well unless you count dying, which I am not.

And those dealing with metastatic disease are grappling with survivorship in a different, very literal sense.

Once you’ve been diagnosed with cancer, from there on out, you’ll always have that label attached to you. You’ll always be a cancer survivor, even if you don’t like or want this particular label. Sort of a daunting thought. Or a really great one depending on your perspective. After all, you’re still surviving. But the cancer label stays with you. It’s part of your identity – a permanent scarlet letter of sorts. You’re never completely free of the big ‘C’ again.

Last year, I wrote about how I felt as if I were tiptoeing through survivorship. I guess I still feel that way. I tiptoe, but this doesn’t mean I keep quiet while I tiptoe. I can’t. I won’t.

Of course, people do survivorship in very different ways.

Some people make big changes in their lives. Some make smaller ones. Some turn into fierce advocates attending conferences all over the country or even the world. Some start blogging and others stop blogging. Some walk or run in races. Some wouldn’t dream of it. Some wish never to read, talk or think about cancer again. And some cannot read, talk or think about much else. Some join or start support groups. Some drop out. Some turn outward. Some turn inward.

I’m somewhere in the middle, I guess.

There are societal messages out there about how to do this part too.

Move on. Be done. Put it behind you. Hurry up. Don’t talk about it. It’s over. And the one that I find really annoying, be grateful – you’re alive aren’t you? I think this one really means, “be quiet”.

Again, some are okay with the messages. And some are not.

Just as there is no right way to do cancer, there is no right way to do survivorship either.

Each person must do both in ways that feel right for her/him.

Figuring out how to do survivorship can be challenging, to say the least.

I’m still figuring out what works for me and what doesn’t.

I’m still a work in progress.

Cancer or no cancer, I guess we all are.

Do you ever feel like you are doing cancer survivorship all wrong?

 

Do you ever feel like you are doing #cancer #survivorship all wrong? #breastcancer

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Gloria Hood

Saturday 11th of August 2018

I love your blog on cancer surviving. I was originally diagnosed in 2006 - and I smiled at my family, friends and doctor - while I whined online and in a journal. I found it a hard and lonely time - expected to just treat cancer as a mild illness and be positive all the time. I nearly got kicked off one breast cancer support time for disagreeing with the, God so loves me he gave me cancer - it's made me a better person brigade. Sorry if I offend anyone but i really can't believe a higher power would take such an interest in me to make this happen. No getting cancer was just bad luck. Nothing else. 2012 the cancer was back, I became paralysed from the breasts down and was told I would never walk again and would spend the rest of my life, about 2 years, in my bedroom. I got lucky walk not far and not fast but I walk.. I can deal with stage 4 cancer much better - the road has a map - well sort off. it did take a couple of years for me to stop being bitter at what I'd lost - my job, my hobby, line dancing and a whole lot of people I counted as friends. I can't think of anything I've gained - every time I get close to other stage 4 women they die. I've stopped trying to make friends - why bother either you'll die and leave them grieving or they leave you grieving. Don't get me wrong I do enjoy my family and pets and only one comment really makes the hackles rise. It's your such an inspiration, I don't know how you can live with so much wrong with you. I wish I was as strong as you but I know I couldn't live with cancer. I'm no ones-inspiration, I'm living the life I have, enjoying everything I can. Try telling them that they to would do the best they could to live and find joy - and you'll get a look that says - poor soul, cancer has affected her brain or she is lying. They could have a point as I often find others an inspiration. People who manage to live life to the full, those who struggle on working to keep a roof over their heads. Young women who should have years to have or to bring up their children but still keep going. Those who fall down but get up again and again - those ate the people I admire and find to be inspirational.

Nancy

Thursday 16th of August 2018

Gloria, Thank you for your candid response. You certainly have had and still have a lot to deal with. My best to you as you carry on. Be you. Be real. It's enough.

Linda Boberg

Wednesday 8th of August 2018

Perfectly timed post as I am going for my 6-month bilateral mammogram tomorrow, and seeing the breast surgeon next week. Cancer anniversaries, indeed. I keep a list. Thank you for this post. I guess I am wallowing through survivorship (4 years now since treatment ended). I find my patience running out. I've had several other health scares, risks, and each time I get angrier about the constant doctor visits, the ineptness of office staff, the blatant disregard of even considering what all these medications, inserts, and therapies do to the human body. I know, I know, I know: it's to help me stay around. But I tire of it and sometimes it feels like I'm going day to day through thick gravy, trying to find my way.

Nancy

Wednesday 8th of August 2018

Linda, I hear you. Boy, do I. Good luck at your appointment. I hope things go as smoothly as possible. Thank you for sharing.

Renee

Wednesday 7th of June 2017

PS: Don't want to give the impression that any of this has been easy. The past 6 moths has been a rollercoaster ride of emotions- mostly anger, fear depression. Couldn't get out of bed some days or just drove to radiation & slept rest of day. Was off work for months, mostly unpaid. I support myself-no husband or boyfriend to carry the load. I am blessed to be able to be back at work, physically & mentally capable. I try to watch comedies. [Highly recommend new Tuesday show in ABC called "Downward Dog!"] And I can laugh out loud sometimes. I want to give a little hope. Joyful moments have happened despite all of this. Unlike my sister, I have another day. I do talk to her still.

Nancy

Thursday 8th of June 2017

Renee, Nothing about cancer is ever easy. Glad you and your sister still talk. Again, I'm sorry for your loss. Thank you for your additional thoughts and for the TV show recommendation, too.

Renee

Wednesday 7th of June 2017

My opinion is KEEP IT SIMPLE! If what you're doing works for you keep doing it. If it isn't working, try something else. People can overthink problems, especially when the experience is so traumatic. Also, it makes me sad that someone would think they are surviving a/k/a living their lives the "wrong" way. We didn't deserve cancer, we don't deserve to be here any more or any less than those who have died from the disease, or anyone who never had it. We are all as different as the stars despite the common bond of cancer.

My sister died of breast cancer last year. She chose not to do chemo & surgery etc. It was metastasized & facing that pain & chemo effects was not the way she wanted to spend her last year. She was not wrong. She "survived" for a long time despite the suffering. She didn't choose cancer. When she was diagnosed she chose how to live out the rest of her life. Doing what she did is radical I guess. The doctors did not approve. At the end she chose hospice. She did it her way as they say. And I respect her for that.

I was diagnosed with breast cancer a few months after her death. It was still localized & did not spread. I chose surgery & did the recommended radiation & taking Tamoxifen. Here I am and she isn't. Don't know why & pointless to wonder.

I see other people struck by even worse tragedies & decide that I got this -with help from family, God as I understand Him & counselor. I am "healthy" I guess no other major health problems- I can walk talk think work etc. The cancer is gone for now, maybe not forever, but I choose to act as if it will be forever unless/until I'm told otherwise.

Didn't plan to ramble on like this. Hope it helps somebody, I think it helped me.

Nancy

Thursday 8th of June 2017

Renee, I am very sorry about your sister. "Ramble" away any time. :)

Prov31wannabe

Saturday 23rd of April 2016

To put it another way, Pinterest is eager to inform me that "It (name your enemy) can make you Bitter, or Better. It is your Choice." While I certainly do not think I am CHOOSING to be bitter, I think I am. (A/k/a inner snark). And while I would love to be BETTER, I cannot find the wherewithal inside me to proactively make that choice. I ponder why I cannot make this choice. I tell myself I might be rushing it, this has been a traumatic experience, give myself at least a year to grieve (more new concepts to embrace). I tell myself to stop comparing myself to others. I say everyone goes at their own pace. There is no wrong way of handling it. Still . . .the bitterness is a tiny poison, yet another side effect of the condition, niggling its way through my bloodstream throughout the days . . .wearying myself as well as my loved ones and friends trying to support me. Will any of us have the fortitude to stick around long enough to see improvement.

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