Friday, October 12, 2012

MENTAL MALADIES, POST CANCER

In honor of the 2nd Annual World Mental Health Day, I'm joining the blogging party (albeit a bit late) in an effort to shed some light on emotional health following a cancer diagnosis.

I'm not a medical professional, but I'm pretty sure whatever mental maladies you struggled with pre-cancer will be exacerbated post-cancer. Your usual coping tools will no longer work. Fasten seat belts. Gonna be a bumpy ride.

NOT READY, NOT SET, GOTTA GO Pre-cancer, exercise was an effective form of mental and emotional therapy for me; it helped to reduce my overall anxiety (I have always been a worrier). Post-cancer I wanted this to be the same. But after a double mastectomy, reconstruction and subsequent healing complications, movement and lifting restrictions by my doctor meant I couldn't exercise for long stretches of time. As in, months at a time (aside from walking, big whoop there). Suddenly my exercise tool was missing from my toolbox. And as you know, being inactive and burning fewer calories leads to weight gain. (Ten pounds over here.) That means more anxiety, 'cause extra weight is a risk factor not only in getting breast cancer, but in recurrence as well.

What I didn't see coming was the lack of energy brought on by a cancer diagnosis. Dealing with having cancer is obviously very emotionally depleting. Your world is turned completely upside down, you spend more time in doctor's offices than you do with your friends, and you have to practically enroll in medical school to understand what's going on in your body. (My brother calls it getting my WebMD degree.) Tack on surgeries, treatment, Tamoxifen, and the lethargy that comes from being in bed and just laying low (my BC sistahs who had chemo and/or radiation really suffer in this department)... well, you can see how easy it is to gain weight.

Some people find that they lose their appetite during times of extreme duress. Some find their appetite increases. I have experienced both of these. When you're healing, it's vitally important to eat healthy, high-protein foods. So you have to keep eating. For anyone who has ever tried to numb a bad (or good) emotion with food, this is tricky territory. My primary care physician set me straight regarding feeling bad about my extra pounds; he looked me straight in the eye and said, "Now is not the time to be dieting." What I heard? "Go ahead, eat the ice cream."

You might be thinking Hey, I can always burn off a few extra calories in the bedroom. And that might have been true pre-cancer. But lopping off body parts chews you up and spits you out onto a very dark and harrowing road, one that takes a loooooong time to find your way back from. So if you had any Body Image Issues before cancer (and lets face it, who didn't?), you'd better grab your crash helmet, 'cause you live in B.I.I. town now —where life is always under construction.

All this post-cancer anxiety may make you want to self-medicate by adding a little wine to your whine. And who could blame you? But you know pain killers and drinking make a bad marriage. You might also be tempted to keep up the pain pills even though you're not really in that much pain today. (Again, who could blame you?) But please be careful on these slippery slopes. Restrict that bad-girl behavior to a few hours, not a few weeks or months, please.

This leads me to getting a good night's sleep. Remember those innocent moments before you were diagnosed, when you'd be laying in the dark, waiting for sweet slumber to strike? Cancer strips you of that tender time. Cancer steals your sleep and hack-saws your dreams. Nighttime becomes terror time, just like when you were a little kid, except now the scary things are no longer just in your imagination. Knocking yourself out with pharmacology is often the only way to get a good night's sleep post cancer, I am afraid to say. I have had good results with melatonin too. (Always check with your doctor before taking any Rx aids, OTC or otherwise.)

As you can see, a cancer diagnosis has very little positive effect on your mental and emotional health. That's why you need to be prepared.

WHAT NOBODY TELLS YOU
When you're in attack-and-recover mode, all of the above anxieties are going on all at once. And you somehow get through it — with the (hopefully) loving support of family and friends who bring you food and flowers and cards and comfort whenever they call or stop by, which is (again, hopefully) often. Their attention and distraction enable you to temporarily cope emotionally. But what happens if you don't have such a good support system? What happens when you have to struggle through a lot of this s*** alone? And what happens when the people you have come to depend on are no longer dependable because they need to get back to their own lives? What happens then? 

Ah, the frightful secret: On the heels of healing comes disappointment — in ourselves, our bodies, our minds, our friends, our family, our life. Because, let's face it, everyone wants to get back to "normal." They need to get back to normal. And eventually that is what they all do, because they have to. And you? Well, you'll never get back to "normal." You have to find your new normal. And that sucks most of all.

So you gotta figure out which new tools you need in that lovely emotional toolbox of yours.

The first crucial thing I did to counter my mental maladies was to surround myself with other women who were diagnosed with breast cancer at the same time as I was. I joined an online group at BCO and seven of us then started our own closed Facebook group. I call these wonderful women my rubies; I wrote about them here. And I couldn't have made it through all this BC crap without them. They understand everything I am going through. They lift me up in my darkest hour and cheer me on in my happiest moments. We are always there to listen to each other, 24/7. Though we live in different parts of the country, I was fortunate enough to meet two of my rubies this year, and hope to meet the rest of these wonderful women in 2013.

The second crucial thing I did for my emotional health was to start this blog. In the beginning I was writing to no one, for no one. Because no one knew I had started this thing. Very few people who knew me in "real" life knew I was blogging about life post-cancer. I didn't tell them because I needed to feel free to write about whatever was troubling me without worrying that someone might be offended. Of course, that still happened anyway. (One of my closest friends told another close friend, Be careful what you tell her, or she'll blog about you!) Oh well. The point of this blog was never to please anyone other than me. Call it selfish; call it self-preservation. I needed to get my thoughts and fears and experiences out of my head; it was literally the only way I could make sense out of what I was going through. Writing it out somehow brought me great clarity.

What I didn't expect was to find a rich, wonderfully supportive breast cancer blogging community out here in cyber city. Oh my! Besides finding my rubies, this has been my greatest post-cancer joy. While I have yet to meet any of my "bloggy" friends in person, I feel a great kinship to a great many of them. Just take a look under my "Favorites" heading to find some really inspiring ladies, and even a few men. They work through their mental maladies daily. I'm willing to bet they can help you too.

I still haven't told the majority of people in my "real" life about this blog. And of the ones I have told, very few read it. (Guess you have to have gone through cancer in order to truly relate to it.) So while I don't even know who is reading this, I know that you live in 87 countries around the world and counting. And that completely blows my mind.

Blogging has become a positively essential outlet for my emotional health. I'm hoping it helps you in some way, too. Isn't that what community is all about?

15 comments:

  1. beautiful...generous...candid as always...you are amazing...xoxoxo m

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  2. Hi Renn, I think you’re bang-on regarding the lack of warning, and the subsequent disappointment that can follow in ourselves, in others, in life. But I think through posts like this we can spread the world about the emotional crap cancer throws. I wrote a post as well at my Bumpyboobs page on FacingCancer.ca, and a lot of the points seem similar to yours.

    Thanks for sharing your side of this story!
    Catherine

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    1. Catherine, I agree, there is little discussion with regard to the emotional impact of cancer.

      You'd think that doctors would as something — anything — about how we are doing emotionally. But no doctor has *ever* asked me how I am feeling or how I am doing emotionally. It's always all about the physical. Kinda crazy when you think about it.

      Thank you for stopping by and pointing me to your post! I will check it out. :-)

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  3. So, so good, Renn! You nailed it. People who haven't been thought it can't imagine it, and those of us who have are nodding our heads and saying "Mmmm-hmmmm!" Thank you for educating the masses on an important topic.

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    1. Tks, Pink. As I just wrote to Catherine above, I've never had any physician ask me about my mental/emotional health. Have you? I'm not sure I even thought about it, until now.

      It's something I'm going to bring up at the next doc appointment I have!

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  4. Hi Renn, thank you for putting this post together and sharing with us... people like myself who has not had to endure this horrible disease, get a little window into what you and others have dealt with.

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    1. Thank YOU, Launna! Always a pleasure to hear from you.

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  5. Yes, you summed it up oh so well. I live in New Zealand and at my first appt with radiation oncologist she pointed out that it was very common for cancer patients to have some form of Post Traumatic Stress Disorder after treatment finished. I have had issues with depression before and so hubby is keeping an eye on me. I have down days to be sure, especially when pain flares up again, but so far have dodged the depression bullet. Where I live I was eligible for free counselling but only while under the care of the oncology dept so as soon as I finished my last radiation I was no longer eligible, and it's after all the treatment when you have time to catch your breath and deal with all of it that you most need the counselling. Thanks for putting it out there, Cath

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    1. Catherine, how astute of your radiation oncologist to mention the potential for PTSD! Forewarned is forearmed. I wonder how many others have been told of this possibility?

      You raise a good point: It really is only *after* treatment ends that we can begin to access what the heck we just went through and, indeed, therapy would be most beneficial then. I'm sorry that the cost-free counseling option is no longer available. Glad your hubby is keeping an eye on you. Please take care and thanks for your input!

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  6. Renn - You mentioned it, but I would re-emphasize the toll that meeting "expectations" - your own as well as other, does on the mental and emotional mojo. During my first year of diagnosis, I found I had to be the one reassuring everyone around me. I have pissed-off my own mother, for NOT including her in my blog (wth???). Sometimes people feel that because you have cancer you should always be "brave and above the human fray." As if cancer has elevated us. Well, some days you just don't feel so brave, and so need to be allowed to be human - with all of the concomitant flaws.

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    1. TC... Ah yes, Great Expectations, the bane of our existence! (That's a whole blog post right there!)

      You make a very good point about expectations are their toll. It kinda boils down to the old adage that you can't please all of the people all of the time. So then I ask myself, why am I trying so hard to please anyone but me? I too found myself reassuring anyone and everyone. When really I was just trying to reassure myself. I would size people up pretty quickly... are they really interested in hearing about what I'm going through? Will it upset them if I talk about it? Will it upset me?

      We are, after all, only human. Thanks for your insight, as always! xo

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  7. This post was exactly what I needed to read after weeks of thinking I had relapsed only to find out it was a mistake! Now I am starting life again and joining the working world after my Big C experience. I am terrified of getting back this this "new kind of normal" and the fear of the unknown. Everything you wrote is exactly how I feel so thank you for making me feel normal again. :)

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    1. Kingram, sorry to hear you had such a scare. Finding a new normal is such a process. Sending cyber hugs!

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  8. Terrific post, Renn - cyberspace will be rocked by all the nodding heads!!

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