A Patient’s Perspective
Oof. Cancer is lonely.
It’s such a confusing thing to say seeing as there are scores of people diagnosed with cancer all of the time…and specifically here, in this lovely #Pinktober, it’s confusing because everywhere you look you see what seems to be the opposite of lonely….Breast Cancer patients galore… But just as confusing, this feeling of loneliness is universal among us patients!!? I read it all of the time in my online support groups! Universal loneliness…seems like a bit of an oxymoron. I guess if nothing else, I feel validated that I’m not alone in my loneliness as I sit here frustrated, trying to find the words to use to describe how and why I feel so lonely.
Before I go on, I want to be sure to state these truths:
1. I am not lonely because I don’t have wonderful people in my story that love me and support me and stand with me. And 2. I am not lonely because I choose to isolate myself from everyone.
How you *see* us, how you can help us not feel so lonely, is being very mindful of what *version* of us you see.
@ThePurposedSailor
I suppose I am lonely because cancer has fundamentally changed me. The way I experience existence…the way I see purpose…the way I express thoughts and emotions…the way I coexist with others. I feel like I am on a totally different planet (not a higher planet, just different). I have touched death, so the fear of dying doesn’t consume me. I have been to the end of myself and come back so I don’t try to avoid that journey. I’ve seen the darkness of the pit and because it always proves purposeful, when I’m there, I choose to sit in it rather than escape it. Each of these things are counter-intuitive to the typical human instinct of avoiding pain and discomfort and death so I guess that is why I struggle to relate with others and why others struggle to relate with me.
I think, too, (and somewhat related) it’s because my battles have changed. Cancer wasn’t just this thing that happened this one time. Diagnosis may have brought some answers and treatment may have had an ‘end’ date for me, but the forever-ness of cancer absolutely altered me. My energies are otherwise allocated now. My capacity, now, is so significantly diminished that I must choose very differently where I expend myself. Getting out of bed in the mornings is often the biggest accomplishment of my day (and I am being very literal). The constant wrestle with guilt and self-image and weakened aptitude; the obvious imbalance of what others think I ‘should’ be able to do versus what I am actually able to do; the disappointment that I’m not like other cancer survivors that seem to be doing it ‘better’; the expectations that I don’t meet … all because of the massive conflict between my reality and the (faulty, inbred, cliché) constructs made by others in which they think I should fit. I guess that’s why I feel misunderstood.
So from the #patientperspective, please hear my heart today: Cancer patients need companionship in all phases. How you *see* us, how you can help us not feel so lonely, is being very mindful of what *version* of us you see. We don’t “just need grace until we get better” (because you know what better is)… We don’t “just need time to get back to our good ol’ selves” (because you wish we did)… We don’t “just need to stop letting cancer define us” (because you think we shouldn’t)… If you hold these or similar sentiments, it automatically positions us in two different places. Please allow my honesty to challenge your versions, your constructs and your expectations so that you can truly *see* us and, what’s more, so that you can *join* us and make it less lonely here.
I am glad you are writing about this because we all need to be reminded and educated that breast cancer isn’t all about pretty pink ribbons, t-shirts and socks, or walking for the cause, and the endless happy models showing the latest fashions for headwear, or the countless families sitting around smiling around their equally happy, smiling breast cancer “patient”, etc., etc. I hurt for you that you have to feel the things you do in survivorship because your walk doesn’t fit the mold of what that looks like for others, both those who are survivors and those who have are looking from the outside, judging. Love you!
I love you so much momma. I am so grateful you make this place less lonely. ♥️
I love how you challenge us to see through the lense of living in/with/after cancer. It has been appreciated to be able to have greater clarity for those in my life in similar journeys and I have shared your posts often with others to help encourage them in this journey and much undesired life change. Thank you for sharing…it is a gift that God has given to share your story with such transparency. Praying for God’s healing touch on your life and those that He has given you influence and a voice to share with.
This is such a kind encouragement. Thank you Kerry! I appreciate you taking the time to engage and comment as it provides me valuable insights to learn from. 🙂
You are amazingly frank, dear Amber, as usual !
No doubt it opens a new perspective for all those ” outsiders” who support cancer community. Pause for a second and ponder what else they can do for us “insiders”– Out of the millions of human beings in the world, at least some are thinking about us, trying to sympathize, console, inspire .help and give some relief to the cancer patients– often not known earlier. It is not their fault that they cannot fathom your inner trauma- they are fortunate in that ! Still, they are such sensitive persons — to our condition. During my cancer journey of the past 15 years, I felt, observed other patients feel– the impact of a supportive person reduce our pain at least for a short period- boosting our limited energies.
Of course, these days even a disaster is commercial gold-mine– excellent opportunity to make quick money !
It is not surprising that some organizations and individuals take advantage of the miseries of cancer community– we have to accept it . However, there are many many kind people who are keen to relieve the suffering , volunteering, spending their resources for this cause. You are very much part of such noble lot– through your counselling, writings and other help to cancer patients across the world.
I have a relative- a lady who is diagnosed with lung-cancer 4 months back– she is confused- whether to share her fears, anxieties with others- or simply bear in isolation- unknown, unheard. She appreciates my style of living with cancer– totally open, extrovert, sharing and looking-out for other patients who need my help– but not convinced to share ! She says , by ignoring it totally- gives her relief !
Let us try to project our inner turmoil as transparently as possible– of course all are not “Amber”s– but appreciate their effort when they genuinely attempt to help us .
Ramana T
India
Oh absolutely! I agree that there are many in my story that do their best to love well. And they know that because I tell them often. And again, absolutely acknowledge that my story is not the universal one.
I write knowing that people can take my authenticity any of these ways: 1. Helpful and informative, 2. Offensive, 3. Irrelevant, or 4. Somewhere along the spectrum. In that, my heart in sharing my authentic experience is for people to receive it as something to learn from. All feedback is relevant even when not fully related and analogous.
And I’m so sorry to hear your relative has had a recent diagnosis. Hoping for her health and wellness, praying for this to prove purposeful in her story.
As always, thank you for engaging and offering value and insight! 🙂
It is not only “what” is said but “when” it is said matters. The vitality, energy and impact of words is lost when they are delayed—“ WHEN BREATH BECOMES AIR” – this is the autobiography of late Dr Paul Kalanithi, a brilliant young Oncologist, who lost his battle with cancer. It is “ rattling, heartbreaking, intensely moving” poetic narration by him. Just like breath when stops, loses its living stature and reduces to mere air, powerful words also become ordinary alphabet, when spoken late.
This fact is reflected in your immediate response to my comments- – in spite of your very busy commitments, you could reply so fast—even my daughter, living in the first floor of our residence, does not reply me this fast ! You are not only a natural counsellor but also a person with deep understanding of human values. Thanks a lot Amber, for your amazing response to the comment from this unknown individual the other end of the world !
Ramana
Oooo, I am gonna read that autobiography!! I love the premise of it and I will likely enjoy the read!
I’m grateful for the ability to connect no matter the time zone, the opposing seasons, the splitting of hemispheres!! 🙂 have a beautiful day, my friend! (Or night??!) 🙂