Thursday, March 21, 2013

The Blame, Shame, Guilty Game



This post was originally titled "The Good, The Bad & The Guilty" but after reading it through I thought I'd jazz it up a bit with a good ol' rhyme. How cool and smart am I? :P

The Good
1. My ultra sound on my reconstructed side came back clear. It appears to be just built up scar tissue in there. No cancerous lumps. Whewwww!

2. My reconstructive surgery has been scheduled towards the end of April! Hooray for fake nipples! ...And it's earlier than originally anticipated too. Very thankful to be getting in sooner than... Fall. Which is when they were planning to schedule me. I had thought it was going to be May-ish but it turns out Dr. Van Awesome is one busy plastic surgeon and is booked through until after the Summer. Luckily I was squeezed through. 

3. I met a woman who is 10 years out from her original breast cancer diagnosis. She was 30 when she was diagnosed. And has since had one daughter and currently another one on the way. This news gave me hope. I had yet to meet someone else who had been through this as young as I am and is that far out from treatment. To hear that she is doing well and healthy 10 years later was so uplifting. There is hope people!

The Bad
1. On a totally opposite and sad note: I have been hearing of more and more friends and friends of friends who have had recurrences recently. It makes me very sad. Angry. And scared. All I want to do is take it away for them. It just seems so unfair that after everything people go through with treatment they end up having to deal with a relapse. It is devastating. 

2. In more upsetting news: Recently a breast cancer blogger named Lisa Lynch passed away at the age of 33. She was one of the first breast cancer sisters I started to follow online after my own diagnosis. I even read (most of) her book... The C-Word... Lisa was another young one like me diagnosed at 28. I believe she had a recurrence a few years later that had spread to her brain. So horribly sad. I can only imagine the heart ache her family feels. It is just awful.

3. More in the department of Ashley's bummer emotions: I have been feeling guilty lately. Not a healthy thing, I know! Which brings me to... 

The Guilt
No one tells you about the poisonous emotions of guilt and shame that someone with cancer might feel at any point during their 'journey'. But here it is, happening to many of us who have gone through cancer. And it's happening to me.

I'd like to say first off that I realize that guilt is a useless negative feeling that no one should have. I don't like feeling it and I am working on evicting the bastard. I also have learned that it is a common emotion for people who go through something like this. That, in itself, made me feel a little less crazy for having such guilty emotions. Once again, my feelings validated and I am not alone!

So - Why might a cancer survivor feel guilty? Here is a running list of my own issues around guilt in no particular order... 

  • Guilt around getting cancer in the first place. I know I am not supposed to blame myself. But there is a part of me that does. I wonder what I did. What I exposed myself to. What I should or should not have been doing. I eat some ice cream and feel bad and wonder if it is going to contribute to a recurrence. I wonder if I shouldn't have had those mid-week cocktails before I was diagnosed. Or if I just wasn't doing a good enough job of taking care of myself. There are also people out there who try to ask me what I did differently. So they can know what it was I did potentially wrong (so they know what to avoid). Nothing like making me feel awesome and even more to blame than asking what I did different! I have had people point out that it was soy protein that did it. I have had some people say it was all of the grief and disappointed I carried around in my chest. I once had someone tell me that I probably didn't eat enough grilled foods with charcoal as a child and that is why I ended up with cancer. Yes. Because blackened carcinogenic morsels of deadliness are sooooo fricking healthy. 
  • Guilt around all of the kindness and generosity from everyone since cancer and during treatment. I feel like I owe people something for all of their hard work and efforts to making my time during chemo smoother and more comfortable. All the time people gave to be with me during the difficult times. All the meals, clean ups, help with our move, the cards, flowers, emails, rides to appointments. I wish I could repay people but I know it is not expected. If roles were reversed I'd be there to help them too. This, I know.
  • Guilt around financial help. I so appreciate all of the assistance we had. But I feel shame. Like it was wrong for asking and accepting help. Like I should have waited until I REALLY needed it. I recently watched a good TED talk on this fear of asking for help and feeling shame notion. It was a good slap in the face! Maybe I should watch it again.
  • Guilt around being angry, jealous and envious of other people. Not much more to say on that subject. It's shitty to be feeling that way. And apparently, as I am reading in the book Picking Up The Pieces, it is quite common to feel all of these things. 
  • Guilt around not working. For real, once upon a time I actually used to work! I probably haven't mentioned that on my blog at all until today. I know that it's not like I am needed at work...they are not in a lurch by any means. And people are not pressing for me to return like some cancer buddies I have met whose bosses are on them the minute they finish treatment. But just the very fact that I am still taking time to recover makes me feel bad. I feel guilty for taking so long to heal and to find my new sense of normal. I think because Mike was laid off and we have been having to watch our nickels and dimes since October doesn't help with this not-working guilt either.
  • Guilt around surviving. Yep, I said it. I look at one person who passed away and wonder why I have made it to this point. I feel bad when I meet someone who has something that seems worse than my own case. I can't help but feel like it would be wrong to say "I am supposedly cancer-free" after hearing someone tell me that they have an incurable type of cancer. I feel bad when I hear of a friend who has relapsed. And I feel like their families wonder why their son or daughter died? And not someone else's? Even though that it isn't probably true, it is totally something that crosses my mind. And when someone else has worse side-effects, it minimizes the feelings I had of my own... making my experience seem 'not as bad' or not as big of a 'fight'. This lovely guilt category is what is known as Survivor's Guilt. Yes, it's actually a thing.
  • Guilt around not being able to give much of myself or think beyond my own care. Sometimes I feel like just getting out of bed, feeding myself and carrying on with the day is an effort. Doing every day errands or daily tasks that would normally be done without a thought are met with a feeling of dread and helplessness. And then I feel bad that I wasn't able to make the baby shower. Or that I couldn't do the favour someone needed. Or that I wasn't productive enough to make time. Or that I don't know how to be there for someone else who is needing me. The reality of it is: How can I possibly offer up any kind of support to anyone else if I can't even help myself? This kind of guilt then leads me to...
  • Guilt around needing so many months to recover. I know it takes time. I know this is all normal and expected, says my oncologist and countless amounts of fellow survivors. I am a returned soldier who has PTSD and can't quite assimilate back into home life. I get tired after walking for half an hour. I don't have the energy for too many things in one day and I feel burnt out if I take on too much. City trips are frequently met with complete dread because I know how exhausted I will be by the time we get to Horseshoe Bay on the way back. I can't help but feel pathetic about the fatigue and emotional stuff. How have I not bounced back yet!? On one hand I find myself explaining to people that I am not physically, mentally and emotionally 'better' yet... but yet I deep down expect it of myself at the same time! And don't get me started on the day-to-day stuff. How have I not sorted out some kind of happy routine where I am feeling back to normal? (Whatever normal is at this point!) Which then is followed by...
  • Guilt around not living life with the zest and passion I dreamt about during chemo. I know I am doing my best, but even that seems like it is not enough. There are some weeks I feel like I am doing too much (and am told this by others, even people I have just met!) But then there are weeks when I slow down, I feel guilty for not doing enough. And then I shake my head that I am even fretting about it all in the first place, because I wasn't gonna be hard on myself and I wasn't going to sweat the small stuff anymore if I made it through! I was gonna live freely, with joy, peace and excitement for my life! I sound like a broken record on the whole 'post-cancer-life' dilemma, but I can't help but still bring up the huge let down that it is. And I know someone who hasn't been through a serious illness before might think I sound a little ungrateful. Which then, I feel guilty about of course! To clarify: I absolutely am grateful. It's just that I am stuck in this void right now trying to move forward into a balanced life... Where I don't over-think things and I find myself having a day where cancer doesn't pop into my mind every hour. That would be nice!
  • Guilt around not being MORE grateful. "Aren't you so happy you survived?" "Aren't you so excited it's over?" "Aren't you so happy you only had to do one mastectomy?" "Aren't you so thrilled to be BRCA negative?" "You must be so happy and proud to call yourself a survivor." "You must feel so lucky." "I bet you have such a greater appreciation for life and must feel so much gratitude now." Talk about pressure people! ...I was gonna go on a bit of a wild rant at this point... but have decided best to leave this one unsaid. 
  • Guilt around being still so involved in the cancer world. I am not talking about treatment or the follow-ups, those are a must. I am talking about the advocating roles, the studies, the support groups, the volunteering, the peer support, the young adult cancer retreat, the after-care involvement, the books, the articles I read by choice, the Twitter-based breast cancer 'gatherings', the Instagram #breastcancer hashtag searches... all of it. While this stuff is therapeutic, helping me and getting me into a better space, it also makes me feel bad for being so IN it still. Like I should have moved on by now and started socializing more outside of the cancer realm, meeting friends for tea or going on a mini getaways with non-cancer people. (Which by the way, takes so much energy that I, more often than not, will not initiate...see reasons given above around energy and lack of effort) 
  • Guilt around needing to still talk about cancer. To Mike, friends, family, my therapist. The whole bunch of them! I know not everyone still wants to hear about my cancer stuff... Heck, it's been close to 15 months - cancer talk is getting stale at this point, even I am tired of feeling the need to talk about it. But not everyone cares that I am getting my nipple. Not everyone cares to hear about how depressed I felt on any given day. Or how scared I am still. Having this cancer experience makes it such a huge part of my life right now. It difficult to not talk about it because it is still taking front and centre stage. Which in turn makes me feel bad. Like I shouldn't need to bring it up anymore. Everyone else has moved on. Why can't the girl who had cancer move on? I know I won't always be the emotional cancer girl. But right now this is a space I am still in and am not quite able to move on from. 
  • Guilt around not being my old self for the people that expect it. I know I can't go back to the old Ashley. It's impossible. But I have felt at times that some people are waiting for her. And I hate to break it, but she no longer exists. Sadly, cancer does that. And I know it's not all doom and gloom... a happy cheery ME is in there somewhere... It's just a work in progress right now. Be patient with me please! :)
  • Guilt around being such a mess for Mike. He puts up with it all. He deals with my irritability, my sadness, my crying from nightmares, my insomnia, my worries, my fears, my anxiety. The poor guy deserves a flipping award for "Most Patient Male"! He is seriously thee most kind and caring guy a girl could ask for. I am so fortunate. I am so lucky. I am so fricking glad to have him in my life and know that he is still along for the ride with me. 

I think that does it. Getting all of that out feels both liberating and exhausting. But I really feel I have now acknowledged the individual aspects of guilt and am ready to try to push passed it. 

With Spring starting now, this season marks new beginnings anyway. I need to start washing myself of the negative self-blame, shame and say adios to the rest of these really pointless saboteur-like head games of emotion. 

15 comments:

  1. Oh boy, there's so much I relate to in your post, Ashley. Guilt for not working full-time, guilt for dragging my husband to Canada after treatment, guilt for getting sick . . . guilt for travelling (even though it makes me so happy). Like you, I'm working on it. And hopefully we can keep doing what's needed (resting, exploring, recovering, rebuilding, etc.) and just learn to ignore the stupid guilt. ~Catherine

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    1. Hi Catherine... Yep, it's a work in progress isn't it? It totally feels like rebuilding at this point. Thanks for sharing! xo

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    1. Hi Jill! Glad to hear it resonated with you. xo

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  3. This hits home for me as well. If you ever need someone to vent to please know you can reach out to me any time. I know how it feels to so badly want to talk about cancer, but also at the same time not want to bring anyone down. It's a line we have to walk every day. You can talk to me anytime you want about cancer or how you're feeling. I'll never get tired of it!

    And I am so very saddened to hear about Lisa. I love her blog. She's an amazing person and will be deeply deeply missed.

    xoxo. - Jessi

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    1. Hey Jessi. Thanks so much. It is nice to no I have some young bc friends to share with when I need to! Much love to ya girl! xo

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  4. Thanks for this Ashley. It really resonated with me too. I hope you don't mind but I've posted the link over on my public facebook page to share with my family, friends and readers.

    Thanks for sharing this with us. xxx

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    1. Hi Lia, happy to have you share it. Hope that it was helpful to have some family and friends read it and get a better idea of what you might be going through too.

      Hope you are enjoying your new house! xo

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  5. This might be exactly how I felt in every way. I don't know what more to say, other than it's nice to read this and feel understood.

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    1. Thanks Mary. I am glad to share... even if some of it falls under the "oversharing" category... happy it is reaching others and making people like you feel understand and less alone. xo

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  6. Ooh that is great news about your reconstructive surgery! I also love your story about the woman who has been great for ten years now! Amazing! That's hopeful and uplifting! I sometimes get sad because I hear so little of these stories.

    Yeah the guilt thing is probably something I will just have experience myself. But I can imagine we all go through something like that! I really hope you'll be able to say adios to it this spring! :)

    XX

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    1. Hi Ciel! :) I have heard of two other woman who are 20 years out!!! It is uplifting for sure!

      Here's to better times this Spring and Summer! xo

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  7. Wow. All of these guilt points resonate. And you're right--you shouldn't feel guilty about any of them. But easier said than done! Have been working at it longer than you have. I was diagnosed with breast cancer twice at age 31 and I'm turning 50 this year. Thanks for sharing your beautiful voice. It makes a difference.

    -Lisa

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    1. Hi Lisa, thanks for your feedback! It is nice to hear that my ramblings are appreciated :)

      And congrats on your milestones! It is great to hear that you are doing well and so far out from the original diagnosis. I'll admit the "twice" part gives me chills though. I can't help but worry I will be doing this a second time.

      Thanks for reaching out and giving me more hope! xo

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  8. Hey Ashley,
    I saw that you followed my blog, so I stumbled over to yours as well. I will echo what's been said, if you ever need to talk, let me know. This post definitely hits home for me as well..you definitely are able to put some words to feelings I've been having recently, too.

    Let me know if you ever want to talk...it's true that there are a lot of us out there, and it really helps to read everyone's stories.

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