Showing posts with label survivors. Show all posts
Showing posts with label survivors. Show all posts

Saturday, November 5, 2011

The "Cancer" Conversation

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The "cancer conversation" can be a focal point of stress for me, personally. It is not that I don't or won't converse. When specific, non-judgmental inquiry is initiated I do not have any qualms about answering. The open-ended "how are you feeling"? Or the blatant, expectation for me to "dish" - I can feel my emotional protective wall envelope me. Not because I am protecting myself from the inquiring person, but because I am protecting myself, from myself.  More so when family "expects" me to be the one to initiate the discussion. I also, selfishly, (and I do use that description quite a bit when trying to express how I am dealing with my chronic illness. Not because I am being self-deprecating, but because cancer is a "selfish" state of being) squirm at the thought of having to deal with the inquiring persons reactions.

Then there is the discomfort of the unknown. When presented with the open-ended query of: "how are you feeling [or doing]"; I am not sure just how much the inquisitor really wants to know. We live in a society where the perfunctory start to every conversation, whether it be with the SB Barrista, a client, an adversary, or a BFF, starts with "how are you"
In short, its complicated
The below synopsis, of a study conducted by The University of Texas' study on cancer communication, delves into the complexity of this "conversation."



Reprinted from "Navigating Cancer" - October 12, 2011

Some people choose to discuss their health concerns with those who are closest to them. Others prefer professional counselors, support group members, other survivors, or acquaintances made through the Internet. Not everyone finds the connection they need from the same source, and the depth of the conversation will vary as well.

Communication about an illness was the focus of a study conducted at The University of Texas which provided interesting results. Researchers specifically looked at patients asserting control over how they chose to discuss their illness, or chose not to discuss it. The overall findings suggest when patients assert control over communication it helps to overcome feelings of helplessness. In this way patients can determine an aspect of how they want to face the challenges of their diagnosis.
Erin Donovan-Kicken, assistant professor of communication, led the research to examine the strategies people with cancer use to communicate with family, friends, and colleagues. Donovan-Kicken and her team interviewed cancer survivors on how they approached the topic of their diagnosis with various audiences. The team gathered data regarding the advice patients received, the challenges they faced, and the recommendations they would make when talking about a disease. The participants were also asked to evaluate existing patient literature and how they managed information about their illness.

The study results indicate that asserting control over communication is an important factor for patients coping with the stress of cancer. Yet despite best efforts to control that communication, patients can’t control other people’s reaction. Patients will benefit from setting boundaries with family and friends when they need space to be ill or feel emotional in private. They should be allowed to focus on themselves without needing to support others, and to avoid people who are overly solicitous. Choosing not to engage in social discussions about an illness can prove to be an empowering decision for some patients.


Ultimately Donovan-Kicken’s research defined the difference between asking –
“Are you opening up to people?” and
“Do you have people you can talk to if you want to open up?”

The distinction is note-worthy for oncologists and survivor advocacy groups who counsel and provide support to patients. Patient literature could also be refined to emphasize what is meaningful about communication from patients’ perspectives. It could include suggestions on how to manage or withhold from personal health discussions, and establish boundaries allowing patients to experience their illness in a way that best suits them.

Saturday, October 29, 2011

A Glimpse at the 'Survivor Side' of the Cancer Journey

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Been reading your blog; won't post anything on it for all to see since there is no mention of us on it.








Prologue ~ I believe I am beginning to understand who the true cancer "survivors" are. It is not the ones with the disease. It is those who surround us.

I am so glad you are reading the blog. I do mention you guys in “.......” in July. If I am not railing against the Pink-Industry, I mostly mention Husband and kids, I think it is because managing their day to day life with my chronic disease is a FT job.

You sound offended. No slight in any which way is intended, has been intended, or ever will be intended. I truly am sorry if you are feeling slighted in any way or form.


My writing is what I am feeling about living with a chronic disease, and the blog helps me distill those feelings, whether they be outrage, disgust, euphoria, sadness, or even pedagogical and snarky.

I know that it appears I am being selfish about my cancer.

I am.

But not because I am trying to be hurtful to others.

When I am asked, I will share what I feel I am emotionally or psychologically capable of sharing at a given time. It is difficult for me, most times,  to "share" when I am speaking with people. Even with Husband it can be an uncomfortable subject...to acknowledge that my life has been reduced to a 20% chance of surviving 5 more years. ONLY if I do / did what conventional medicine offered...which I chose not to.

It is easier for me, and always has been, to write. So, now I blog. And for those who want to “know” what is up with me, my blog is a forum in which they can delve at their leisure, without ME getting in the way.

And for those few who read, commenting is voluntary and appreciated, but never necessary or required.

Thank you for sharing your feelings with me. Your one cryptic, yet pointed, sentence did speak volumes.

I may not meet your or anyone else's expectations, but do know it is not because I am trying to hurt anyone in any way. Or, that I am being consciously self-centered. I think I do understand how challenging it is for you - to be a spectator while I take this journey. You are not the only one who, at times, feels "left out."  Husband, too can only be a spectator. Cancer is not a "team" sport. And, admittedly, I am not a good Team Pink player.


But it does not mean that I don't love you, and appreciate you. I love you, as me. That's all I can do.