Therapeutic Writing: My Cancer Story, My Cancer Community

For over four years now since my de novo diagnosis, writing continues to provide a positive forum for my metastatic cancer experience. Essays and poetry as well as my blog are all unlimited in so far as opportunities for my creativity and outlets for my emotional ups and downs.

Healing Words

Healing happens when we reflect on the life we lead, how we got here, and for us with metastatic cancer, our lives in the short term. There’s always time to change: in a minute the course of your life can change forever, just consider the diagnosis itself!

But that’s an outside force revealing itself inside of us. If 95% of cancers are not genetic, they come from outside forces and shift and mutate our insides until the good in our bodies no longer can recognize the mutated cancer cells. Simple yet oh so complex.

Writing allows for healing and therapy to happen out in the open: where cancer for most of us likely began. We write about life stressors. Evidence suggests stress exacerbates the physical situation that leads to a cancer diagnosis. Old psychological wounds, negative self images, depression, and nutrition all can lower the body’s immunity. Our ability to kill the cells before they grow into a part of us weakens and gives way to illnesses, not only cancer. We physically manifested the cancer – that’s true. So we can heal the body and allow it time to get rid of the cancer too, should we choose to manifest positive healing space.

Virtual Cancer Support

And it’s never too late as far as I’m concerned. In fact my oncologist quipped that I’m alive past the time stamp where there’s not a lot of evidence based science as to what we should do next so it’s “guesswork” from here out. This is where writing publicly becomes even more important to my mortality, as one person could have experienced something similar to what I am. Our community is an outspoken one so chances are I’ll hear about a protocol my oncologist and I haven’t thought of and vice versa. So there is even a practical side to writing our experiences.

I fully believe writing our stories and reading others’ as well can create a space in which we can work through the negativity while refocusing our energy on the positive in ourselves, in the company of people who want to hear our voices either to help their own healing and to enrich ours.

Equally as important as writing, and to the point of letting others in to hear us and understand us, I’ve met incredible women and men on the same trajectory as I am on and I cherish the community that is just on the other side of the screen whenever I choose to reach out and communicate.

And they are not only people with MBC, but those with cancers of all kinds at all different stages including those with metastatic cancer. My community includes the newly diagnosed with any stage of breast cancer, those afflicted with chronic illnesses, partners and spouses of cancer patients, carers/ caregivers, and women who I admire and feel blessed to know through a small and ever changing intimate group of writers.

I wouldn’t have the same rich experience with the isolation that comes with a life lived with MBC if not for my writing. Life opens up doors of opportunity because sharing such intimate experiences attracts those who need to feel they’re not alone in their own.

I’m Positive it Works

When we let our story tell itself we can focus very quickly on the negative. In fact my original post was about growing up with parents who were both narcissistic. It certainly led to a negative place and thus took me for a negative turn, a “pity party” rather than a “positive party.” We can take away from our lives the negative aspects, which we all have, and place those events at the epicenter of the tectonic shift and part of the cause of disease. However, if we face those events and heal them by using our own positive energy a little differently then we have a healthier platform on which to stand.

If we use that platform to speak our truth and listen for the support that’s out there waiting to hold us with love, we find such a rich and beautiful space in which we can freely express ourselves. Even though we may never meet face to face I feel I know some of my friends, whom I’ve met through writing, as well and in some ways better than people I know through in person interactions. Stronger levels of understanding as well as a verbal short hand exist for how we experience our lives with cancer. It’s difficult to say I can find that kind of support anywhere else.

A Legacy of Love

I hope that my words encourage more women and men to try to write their own experiences as a way to help themselves through such a life altering disease. Writing is also a legacy of the deepest parts of ourselves. And one doesn’t have to publish a book if the desire is to leave a legacy for those who love us. Leaving our voices anywhere – even in letters or journals – are there after we die and are available to revisit and feel our hearts beat again, even for a little while, to hear our breath feel our words.

Nancy’s Point: Metastatic Breast Cancer, Chronic or Terminal

Nancy’s voice on chronic versus terminal taxonomy brings up several important points and quite a lot of discussion including on twitter. I highly recommend reading this post and not only because Nancy featured opinions on this subject from myself and several other voices in the metastatic breast cancer community.

Possibly there’s confusion amongst those who do not have breast cancer and certainly those with cancer who don’t have stage 4. We all will surly die. But when the prognosis is certain death with a diagnosis of any metastatic cancer you measure your life in teaspoons not gallons. Days not years. Lunches and not vacations. But I’m not shy nor do I keep my diagnosis to myself.

Some see stage 4 cancer as a private matter and do not want to be branded with the purple M. We aren’t treated or approached the same way others who will recover are treated. People tend to shy away seeing death on our shoulder and no one wants to have a constant reminder of their own mortality as I’ve argued in other posts. As in this post about cancer and friendship. There’s an awful lot to be said on this topic.

But I do hope someday that MBC will get the research power to become a chronic manageable illness. That all cancer becomes chronic. But for now hear our voices and join the conversation.

❤️Ilene

Metastatic Friendships: How to shift from isolation to integrative protocols

What is the goal of a friendship? Does a friendship even require a goal to exist or can it exist for the sake of itself? At times in our lives, there’s a need for companionship that goes beyond a need to not feel less alone in the world. I believe having spent the last five years in metastatic cancer land, that indeed cancer presents a number of emotional conundrums in all of our relationships —friendship, spousal, relational, or otherwise.

Some of us define friendship as simply the relationship of ones self to others in the world. But I think it’s deeper than that; souls become richer with the wisdom in listening to the hearts of the people,in our circles of interpersonal relationships. We can begin by asking questions,and truly listening to the responses. It’s there our abstract understanding of another becomes concrete – we strive to try to understand and acknowledge another person’s situation and help as we can even if that means to simply provide a sounding board.

It’s been said it takes about 100 hours of interaction to develop a true friendship. That sounds about right to me as I come to understand someome and their motivations, both positive and negative. I haven’t got the time for bold negativity for the sake of itself. And, pardon the metaphor, I cut negative people out of my life like cancer before they have the opportunity to metastasize.

Motivatious Operandi

To some, friendships are motivated by the rich medley in differing opinions, talents, cultural backgrounds, and now, health status. Without difference we would perceive the world as less colorful and fun, and more boringly shaded in black and white. An integral proportion of the richness and depth of a friendship is in the the care and love we give and receive. Friends form in the space created by our acts of kindness, both small and large. Relationships strengthen over the course of time, be it a month, a year, or a lifetime – act by act. Yet no matter the length of time we also should extend ourselves to value that which we can learn from others. Asking questions and listening can deliver far more interesting results for a deeper, emotionally enriching experience.

Some use friends to gain of selfish impetus. Unfortunately, a narcissist only relates to people as “sources” of, usually, material gain. Yet it’s during the harder times of our lives in which friendships can not only be invaluable but during which the real test results in seeing the strength of the heart of your relationships.

Mathematical Representations?

There’s an argument to be made for mathematical representation of emotions, as I read and researched others discourse on our emotional lives. A book written by Chip Conley showed how emotions and feelings are organized using mathematical terms. (Wikipedia)

Despair = Suffering – Meaning

Disappointment = Expectations – Reality

Regret = Disappointment + Responsibility

Jealousy = Mistrust-Self-Esteem

Envy = Pride+Vanity -Kindness

Anxiety = Uncertainty x Powerlessness

Calling = Pleasure/Pain

Workaholism = WhatAreYouRunningFrom?/WhatAreYouLivingFor?

Flow = Skill/Challenge

Curiosity = Wonder + Awe

Authenticity = Self-Awareness x Courage

Narcissism = (Self-Esteem)2 x Entitlement

Integrity = Authenticity x Invisibility x Reliability

Happiness = Love – Fear

Thriving = FrequencyofPositive/FrequencyofNegative

Faith = Belief/Intellect

Wisdom = √Experience

Can friendships become tarnished through the lens of cancer?

Do people remain in the life of a terminally ill friend as a form of obligation? Do some selfishly use a person whose disease can allow them to look like heroes? I’m certain there’s many hues that color our lenses in how we view our relationships before and after a cancer diagnosis. For me, many stopped cold as tougher times ahead became apparent. Some hung on for a while and slowly exited my life as two years turned to three, and now approaching five since my diagnosis.

Very few old friends stay in touch, but rather check on me through my blog and through social media. Funny thing is social media. The broadcast of health status, personal opinions, pet and kid pictures, etc. publicly relates a facade of our own design for anyone who chooses to look. We become objectifies of our own pretense through the gaze of others. I live in a global community of people with breast cancer and the sub community of people with metastatic breast cancer, which unfortunately seems to be growing by the day. It’s in this depersonalized world where I’ve found comfort and personally supportive relationships. It’s in communities of the likes of #cancertribe and #cancerfriends.

Social Integration

I’ve attempted to engage with friends as they announce their cancer diagnoses on Facebook. I think it’s a Facebook phenomenon actually. Approaching the, with my shoes tied securely on my friendly feet, it was not obligation that drove my actions but heartfelt care. Most of us have been brought up to act with the life-long philosophy that you behave towards others as you’d like to be treated if you were in a similar situation.

I swear I’ve reached out without any need for recompense nor any obligation to use my five years of navigating the healthcare, insurance, therapies, finance and all of the pillars that hold us up in this time of confusion, heartache, fear, and loneliness. Yet no one has grabbed my outstretched hand.

Risky Behavior

There’s lots of risk from the chances I take in reaching out out old friends. The pre-diagnosis friends. Yet I find engaging with people who know me as I am now is far easier for them since they had a choice to take a relationship from former acquaintance to current friendship. Kind of like habits that form over time, both good and bad. Being a friend to someone with cancer I’ll argue takes a special kind of empathy and a gift for knowing where and when to help and how to help so the illness isn’t the center of the relationship but in spite of it.

Most of my formerly good friends fell away like leaves on an oak in autumn. They turned red and fled the living assuming I’d be soon crossing the River Styx waving at them on the shore as they waved on their way down to the ground never to be seen again. It may seem melodramatic, but people I thought would truly be there just weren’t.

And people who now choose to get to know me I think I enjoy them equally if not more than the career focused women and men I intermingled with pre stage 4 diagnosis. I remember the last lunches with a few of them.

A Glimpse into the Unknown

This terminal illness can make ghosts out of even the strongest of us all, on either side of the diagnosis line. I’m sad to lose some and others it’s likely best I moved on or they decided it was too difficult to look mortality in the face when seeing mine.

But as I stated in the beginning, we enrich our lives in different perspectives. Understanding how to be a friend to someone to whom we knew prior to a diagnosis such as metastatic cancer can be rough. But the risk versus the reward is low.

Can anyone truly say how much we can learn about life from death? The mystery of not being is universal, therefore the closer we get to the line, the less fear we will have when crossing our own. So yes, the learning we can gain from befriending or deepening a friendship with someone who’s dying is not only invaluable to ourselves, but critical for the person who is on the precipice of knowing.