I have a complicated relationship with hope, and it all started with my cancer diagnosis. Now, when I say “hope” I don’t mean it in the positive-thinking-cliché type of way, but in the sense of having a purpose or having the will that I need to take the leaps in life that I still want to take.
I like to believe that I learn quickly. When I get hurt, I am super cautious the next time I am faced with a similar situation, even if I have no control over my outcome. I am so cautious that I prevent myself from fully investing myself emotionally so as not to get hurt again. Is it a human flaw to be too cautious, or is caution — or maybe a withholding of hope — just a defense mechanism we develop as we go through life? Maybe it’s both. This same caution has prevented me from taking risks that could help me live better.
I am not going to dismiss the fears we cancer patients feel. For me, I don’t believe the fear will ever go away. It’s unrealistic to expect that. Our lives have been drastically altered without warning. We went into this cancer mess with no preparation. We make adjustments and major sacrifices as we go. We have too much awareness now — many of us. In my case, this level of awareness has made me a slave to my own fears. And after all these years, I am still petrified!
As 2018 starts, I remind myself that I am still here and that I should allow myself to have some hope while gently trying to reconcile my current self with parts of who I used to be. I became too cautious after my cancer diagnosis – I’ve been afraid of getting too attached to anything. I think I’ve even been afraid of my old self! The music I used to listen to prior to my diagnosis I stopped listening to, for example. Those old pleasures are no longer a comfort zone for me.
Recently, I pictured my entire life as a pizza pie. Each slice represented a part of my life. I asked myself, how many slices of this pie have I given over to cancer? How much of that pie am I dedicating to fear? I realized that not only are my slices limited, but I’m not enjoying or making the most of the good slices that remain post my cancer diagnosis. A big part of that is because today I focus more on my fears and less on hope. But I can’t be hard on myself for being afraid. There were multiple biopsies and scares since my last treatment. How stubborn can a person be to continuously believe all is fine after all the hurting? At the same time, I realize this is not healthy for my state of mind, always being hyperalert, hyperaware. Constantly being in a defensive state expecting something bad to happen. On the other hand, in some ways, being like this has also created some sort of safety net for me; an approaching to living, but not an enjoyable one.
I’ve come to a time when I wish to examine my life again and make choices based more on hope than fear. This is a risky choice for me. I want to at least give it a try.
I want to clarify that when referring to “hope” I am not saying that I could completely forget what happened to me and all the pain I endured — not just after cancer but also before, as we all have. I want to create more meaning not related to cancer. cancer will always have a slice of my pie, but I would love to enjoy the other slices and taste some new ones. Then, even if the cancer comes back, at least I will have allowed myself to dance to my favorite songs again.
So as Nelson Mandela said…
————————————————
“Anthem” by Leonard Cohen
“Ring the bells that still can ring.
Forget your perfect offering.
There is a crack in everything.
That’s how the light gets in.”
The small c 
sounds like wonderful possibilities are awaiting for you wherever you want to go now. go for it full throttle! Happy new Year Rebecca 🙂
Thank you, friend. I won’t put too much pressure on myself though. 🙂
You have a wonderful and kind 2018!
i feel the same way.. it is over whelming. I during holidays realized that while I cannot do everything I want to do and things take longer than expected, I end up with at least a large portion of what I wanted to do. This realization helped me drop some of the self-expectation related pressure off myself. we are all human Rebecca; there are not only personal limitations (which is only natural – we are not robots, are we?) but many external factors affecting our performance or wishes. I wish you the best 🙂
I love Leonard Cohen’s “Anthem.” Since cancer, there are times that song breaks my heart wide open and I cry. There really is something about living with meaning in our lives today. Otherwise, even if cancer didn’t kill our body, it succeeded in killing our soul.
Some of Leonard’s songs have that effect on me. And I can see the relationship this specific song has with survivorship (in general). The struggle with survivorship continues, but my hope is to create more meaning and find that sense of balance I still haven’t figured out how to get yet.Perhaps some of us never do. And I need to be OK with that too. Wishing you a kind 2018!
Happy new year! I’m wishing you well, Rebecca! We make our way forward however we can. We do what we need to. Here is what Emily Dickinson had to say about “the h-word”:
“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –
I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.
Thank you for the beautiful poem and for your kindness. We can only do our best, keeping in mind to also be kind to ourselves. Wishing you a kind 2018!
Hi Rebeca,
I think many of us have a strange relationship with hope (among other things) post diagnosis. Don’t beat yourself up about the choices you’ve made or haven’t made. We all just keep muddling through as best we can, or at least I certainly do. May your 2018 be filled with some wonderful slices of that pizza pie of life, my friend. xo
Hi Nancy! I try to remember to be kind to myself. And you are right, I shouldn’t beat myself up considering my circumstances. Survivorship is no picnic as you know and we can only do our best.I will def. keep that in mind when I start pressuring myself. Thank you for your kindness. Wishing you a kind 2018!
I think it’s OK the have fears and maybe negotiate a deal with them to somehow use their energy. This thought just came to me, so I don’t have all the details but your mention of fear and the potential negativity of it brought to mind some recent experience that I can’t decide whether it’s good or bad.
As someone diagnosed with anxiety I have this curious habit of playing chicken with it’s various versions and lately its insistence on moving in full-time. What this means is I think I’ve given up attempting to control it and taken some Zen advice by opening myself to it. Which I’m not recommending here, only that anxiety is visiting and apparently isn’t planning on leaving. Most specifically:
In the last three months I’ve been having trouble breathing–real trouble that’s sent me to the doctor and hospital a number of times including an overnight in acute care for Christmas. As usual for someone who has had four primary care givers this year and very delayed access to the cardiologist following my case since last January, this whole thing is being alive by the possibility of not dying (which is I think is as good a description of HOPE as any other one).
So anyway, into this mess comes a doctor who miss-diagnosed my second heart failure–like right into my hospital room and asked why I’m anxious as if it was planned this way and I told him having lived for over six months, twice, with congestive heart failure and not being able to breath triggered my anxiety and he pointed out that I right then had congestive heart failure and apparently the anxiety was trying to tell me this.
So I guess what all this means we aren’t helplessly pushed around by the world. That our bodies have friends even in what seem like broken parts of brains.
Hope this makes sense, been pretty inarticulate lately. BTW, worked on a Hope training course for online delivery to care givers just after the first heart failure. The person who created the course told me the other day she’s been asked to reissue it so I’ll see if there are tapes available. Some of what hope is about isn’t wishful thinking or unrealistic optimism, more like an ability to endure the fall and get back up again.
Scott, I am sorry to hear you’ve been dealing with some health issues for the last 3 months. I hope you’re feeling better these days. I continue to feel anxious, even after all these years. I think I’ve accepted that the anxiety never goes away. I allow myself to feel it all but I have also found it difficult to take risks or make decisions normal people my age make under different circumstances (and perhaps that’s the key, that they are different circumstances). This is one of the challenges of being diagnosed at a young age – still have stuff to do. I realize my fears are normal under my circumstances but they have taken up a lot of my time. Another words, I am fearful too frequently and wish I felt it less. (The fact that doctors have no answers when it comes to cancer doesn’t’ help. It is what it is.) Perhaps this is just who I am and I need to live with that. Still, I would like to gently change that, if at all possible.
If I understood you correctly, you connected your anxiety with your instincts. I used to be very good with identifying my instincts, and I like to believe I still am, but I find it more difficult to do this ever since my dx. because every symptom worries me.
Your version of hope sounds doable. I think I have been able to get back up from my fall, but I am still limping. I would have liked to access that “hope” training you worked on. Please let me know what’s available. It’s nice hearing from you. Please check back when you can. Wishing you a quick recovery and a kind 2018. Please stay well.
So late with my reply… Will get the name and contact information from either Lenora who created the Hope Course or pester the training college about it. Originally it was designed as a one semester professional development course for nurses to be offered online. I liked it but I’m not sure it’s available.
My sense of hope changes by the day though I think it helps tame the uncertainty of walking around half expecting death to jump out at you at any moment. The surprise ending thing is at least tempered by hope’s possibility of it not happening–why should the worst happen anyway?
Off to the city for about 7 days so Leslie can get her knee replaced. This is her second one so we’re better prepared. Will take my computer and get back to you about the Hope Course ASAP.
Scott
Found some information on the Hope Foundation and their literature base and will also be in touch with the person who began the program.
For now I’ll try this:
Hope Foundation Literature Data Base http://www.hope-lit.ualberta.ca/Hope-LitDatabase.html huge amount of things to read so I borrowed the Letters of Hope as a sample. Available online at the Internet Archive for free check-out https://archive.org/
Hart, J. (1993). Love, Judy: Letters of hope and healing for women with breast cancer. Berkeley, CA: Conari Press.
https://archive.org/details/lovejudyletterso00hartrich
Wife Leslie’s knee operation went well and she’s already up and moving around with a walker the day after so we get to go home in a few days. Also, my cardiologist called today to say they can’t image my heart even with barium tracers for all the stents and scaring so I’m onto a list to assess me for special kind of pacemaker. Finally some positive news!
Scott
Hi Rebeca, your post really resonated with me. After all, how much hope can we have after diagnosis? Then, again, enjoying life’s moments is important. Creating new, wonderful, hopeful memories is really a good thing. So, I say, go for it. Cancer will always have a piece of the pie, but there are so many pieces yet to enjoy!
Hi Beth! I am tired of searching. While I don’t want to pressure myself too much, I still want to create, not just exist. It isn’t good enough for me. I never thought survivorship would be this difficult. We do what we can. Wishing you a healthy and kind 2018, with wonderful memories!
I just finished writing a post myself that I was inspired to write partly by a quote by poet Mary Oliver: “Still, what I want in my life
is to be willing
to be dazzled—
to cast aside the weight of facts
and maybe even
to float a little
above this difficult world.”
Perspective is everything sometimes. xoxo
Just read your blog post, Kathi, and a lot of what you wrote resonated with me. Last year was brutal, and like you, I find it difficult to express how I feel about the losses we had in our BC community. I am hoping this year is kinder to all of us. Thank you for the beautiful poem. It pretty much illustrates what we all wish for. Stay well, friend.
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