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Tag Archives: Cancer

Giving Survivors a Voice through Podcasting: the Maverick Lee Silverstein

LeeSilversteinby Dr. Robin McGee, CKN Editor, Survivor, Advocate

 

Even one person can make a difference.

 

Lee Silverstein was diagnosed with stage II colorectal cancer by routine screening colonoscopy at 50.  He had been married only 30 days when he learned it had metastasized to his liver and later, his lungs.  Devastated, he was plunged into years of treatment: a liver resection, chemotherapy, and ongoing radio ablations.

 

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“Right to Try” is a flat out lie!

arthurcaplanby Arthur Caplan, Medical Ethics, NYU School of Medicine

 

The opposition to Federal Right to Try legislation is not as vocal as it should be.  After all, who wants to oppose the right to try for those dying from cancer and other ailments?  Not Vice President Mike Pence who has been promoting a Federal law for months https://www.bloomberg.com/news/articles/2017-02-08/pence-piles-on-drugmakers-with-push-for-right-to-try-regulation.

 

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Building on Strengths to Face Challenges: Understanding Indigenous Cancer Survivorship

ChadHammond1by Chad Hammond, Roanne Thomas, Wendy Gifford

 

“I call this quilt my ‘Eagle at Rest.’ This is me, new and improved after going through cancer. I have the creativity now.  I feel really connected to who I am again.”

 

Karen’s words and her quilt convey her feelings of strength and her experience of transformation after breast cancer.  The ‘Eagle at Rest’ was the final quilt she discussed during a sharing session associated with our study.  As Karen discussed her collection of quilts, she described the challenges she faced from diagnosis onward.  All of her quilts contained elements of spirituality.  Strengths such as spirituality, along with various challenges, represent key themes of our interdisciplinary team’s qualitative exploration of cancer experiences among First Nations and Métis peoples in Canada.

 

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10 Things not to say to a Cancer Survivor

I first met Drew at Stupid Cancer’s 2014 OMG Summit in Vegas and then again at various conferences over the following four years. I was struck by his intense curiosity and willingness to learn everything he possibly could about the AYA cancer community, in which he included not only survivors, but caregivers too. Over the years we have often chatted about the ever-evolving language surrounding the experience of cancer, and the joys and challenges of communicating within it. As a pithy way of sharing those conversations with a wider readership, I have asked Drew to create a Top 10 List: What Not to Say To Someone Living With Cancer. Have at it, Drew!

 – Pat Taylor, CKN Editor

 

 

drewbologniniby Drew Bolognini, Caregiver/Advocate/Videographer/Editor

 

To begin with, let’s get one thing straight: I’’ve been as guilty as the next guy of saying the wrong thing at the wrong time. I still make mistakes. We all do, but I believe we mean well, really. I hope this list will make us all smarter.  Well, the rest of you readers anyway. I’m not sure anything can be done about me.

 

  1. “Aren’’t you glad you’’ve put that behind you now?”” 

Cancer survivors are never done with cancer, even when they’’ve been cancer free for decades. Twice yearly scans are a constant, necessary but anxiety-causing reminder.

 

  1.  “”Great, now that your chemo is done, things can go back normal again!” 

Uh, no. Chemo and radiation have side effects that can be debilitating and long-lasting.

 

  1. “Stay positive, it takes the right attitude to beat cancer!””

Though on some level this is probably true, cancer survivors are entitled to feel just plain crappy and have bad days. They’’re not obligated to put on a “happy face” for anyone.

 

  1. “You need to stop feeling sorry for yourself and fight this.”” 

See #3 above.

 

  1. “I read this thing on the internet about this alternative therapy that [insert celebrity name] says is curing their cancer.””

People living with cancer already have massive amounts of information to absorb from the medical professionals who are treating them. Suggesting unproven, non-peer reviewed/medically-approved alternative therapies that you’’ve read about on Facebook isn’’t helpful.

 

6.  “You should be eating (name the latest trendy cancer-curing diet or food), I hear the healing effects are miraculous.”

See #5 above.

 

  1. “Pot cures cancer.””

I see this one a lot on the internet. No, it doesn’’t. Though there’’s limited evidence that marijuana can alleviate pain, nausea and other symptoms and side effects of a variety of diseases including cancer, there is no evidence that suggests it cures cancer. If pot was a miracle cure for cancer, something tells me we’’d know it already.

 

  1. “You people have the most interesting perspective on living life beyond your cancer diagnosis.”” 

Yep, that was yours truly, planting foot firmly in mouth at CancerCon earlier this year. Painting people with a broad brush is a no-no. No sooner were those two words (YOU PEOPLE) out of my mouth than I knew I’’d had an uh-oh moment. A respected friend and advocate immediately repeated what I had said in a very disapproving, questioning tone. I quickly rephrased to acknowledge what I should have said from the start: there are as many perspectives on living life with or beyond cancer as there are are people who have been through it.

 

  1. “Is it Hodgkins Lymphoma or Non-Hodgkins the kind that’s considered more treatable?” Also known as ““Oh, you have the good kind of cancer!””

This was also me, at OMG East back in September, to a Hodgkins Lymphoma survivor. Yikes. My question was deftly deflected by this person, and I hope it was taken in the spirit it was intended: my genuine desire to learn the difference. But – no. I was treading on very thin ice on this one. I knew that one of them is considered much more serious and should have asked WebMD instead. Yep, I’’m a bonehead. There are no good cancers.

 

  1. “Oh yeah, my [insert relative, friend or other loved one here] had cancer.” 

As a former caregiver and now advocate, I’’m not sure about this one. On one hand, it’s natural to try to find common ground, a way to relate to this big thing that someone is telling you about themselves. On the other hand, listing people and loved ones you know who’ have had cancer to a cancer survivor can be interpreted as insensitive, especially if you mention the person died from their cancer, or if you seem to be saying that you know exactly what the cancer survivor you are talking to has been through. I guess it depends on who’’s making the list and what the real intent is. In a general, small-talk type of conversation, yeah, it’s most definitely not cool. However, in the right environment, at the right time, from the right person’’s lips, bringing up the elephant in the room and actually discussing the real possibility of death might be appropriate. Especially if the conversation is happening between the cancer survivor and their caregivers, loved ones or closest friends.

 

Bottom line: this isn’’t an exact science. If your intent is to show a deeper understanding and empathy towards the cancer survivorship experience…if you want to create enough trust to discuss – and, more importantly, listen to – the actual issues cancer survivors face, then I think explaining your personal journey via your list of experiences with cancer survivorship could be ok. It’’s a sort of “caregivers street cred” at play.

 

A leader in the cancer survivor movement for whom I have immense respect said recently that “caregivers are cancer survivors too.”  “Wow!” That really resonated with me. We’’re not, really. We are, however, the closest thing to a survivor a person without cancer can be. We experience similar emotions, fears and mental anguish. We want to take the pain and suffering from the person we are caring for, and absorb it ourselves instead. We try. We can’’t. We can never experience it exactly as they do, but we are there with them, nonetheless. And we try to talk about it in ways that are more helpful than hurtful.

 


 

Drew is a professional videographer/producer/director with 3 decades of experience.  His cancer advocacy began as caregiver for his terminally ill mother.  Four other members of his immediate family are survivors including his 34 year old niece, a thyroid cancer survivor.  She was the impetus behind him becoming active in the AYA community.  Since his participation in Stupid Cancer’s OMG Vegas 2014 in his professional capacity, he continues to advocate for survivors through his work with Stupid Cancer and other non-profit organizations as both a professional and a volunteer.

 


 

Part 3 Hospice Series: The Final Ride “Home”

karenhinesserenityroomby Karen Hines, Caregiver

Read Part 1, Part 2

 

Thursday late morning Cassie said “see ya later” to the staff while the ambulance crew wheeled her to the elevator.  Cassie smiled, the nurses returned the smiles amongst tears, we even snapped a quick group picture.  Cass had written on one of the hospital’s white boards earlier that week, “Don’t be afraid, just believe.  Mark 5:36.” She pointed to it as she rolled past.  I tried to smile, but like a zombie, I slowly followed the gurney. Chris and the kids stayed back with our social worker Kathleen.  She spent some time discussing the emotional side of hospice and the idea of “dumping circles”.   She wanted to make it very clear to us that Cass was at the center of the circle, the rest of the Hines 5 were in the next circle, followed by Ashley’s almost fiancé, Jeff, along with the rest of our immediate family and close friends.  The final circle was “everyone else”.  Only support goes “in” and fear, whining, complaining etc. is dumped “out”.  This simple concept was how we were to control what was about to happen at our house for what would be the next 40 days.  Kathleen made it very clear that it is our job to protect each other.

 

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