Do Facebook Likes Help or Scam Patients?

by jparadisi

by jparadisi

I am cautious when initiating online interactions, with good reason.

Sometimes, being cautious feels uncomfortable, however. I’m talking about the Internet phenomenon of patients asking strangers for Likes, or even donations to cover the cost of their medical expenses on Facebook. Despite a high index of suspicion, like most nurses, I have a soft heart. When I see those sweet little faces of bald children asking me to help them get a bazillion Likes on Facebook, I think, “I’m a cancer nurse, how can I not click Like? What can it hurt?” But I don’t click Like, and I feel guilty.

What I want to know is: How does my Like help these children? Are they really out there anxiously waiting for me, a stranger, to Like their Facebook picture? Have their lives as cancer patients come down to this? Where’s Make a Wish? Wouldn’t they rather go to Disney Land, drive a racecar, or meet a teenage popstar? How exactly does my Like benefit them?

Worse yet, what if my Like does harm? It’s easy for anyone to click on a Facebook photograph, and to add it to a file on their computer. Then they can repost it, adding anything to the original post out of context. What if this cute little kid’s picture was used without either his or his parent’s knowledge, and is passing like a virus throughout cyberspace? Worse than that, what if the child is deceased and a family member discovers the picture unexpectedly?

Perhaps I’m reading too much into it. I only wonder, is this a valid use of social media? Then I feel guilty because some little kid with cancer wants my Like, and I won’t give it to him.

A newer version of Internet donations is crowdfunding, and uses social media platforms such as GoFundMe, or GiveForward. As an artist, I’m familiar with crowdfunding. Frequently, artists raise funds for projects through Kickstarter, but patients collecting donations in this manner to pay for medical expenses is a new phenomenon to me.

According to Crowdfunding a Cure, by Alice Park for Time Magazine, December 3, 2012: “Patients and their relatives are raising thousands of dollars to pay for surgeries, cancer treatments, and more.” The article continues to outline the waging of a successful fundraiser through social media contacts via Facebook, Twitter, and email campaigns. This being the case, it’s not unlikely that I’ll soon feel guilty deciding between emails meriting a contribution, and those that do not.

What do you think? Are you with Likes and donations? If this is the future of donations, how will it affect traditional cancer foundations’ collection and distribution of funds?

Recognizing Febrile Neutropenia in Oncology Patients

Send Help, We're Languishing (Febrile Neutropenia) by JParadisi 2013

Send Help, We’re Languishing (Febrile Neutropenia) by JParadisi  2013

Has this ever happened to you?

A patient arrives for supportive care. On examination, they describe flu-like symptoms, and general malaise. Their blood pressure is low, but since their prescribed treatment is IV fluids for dehydration, you are not surprised. Perhaps they have a fever, but just as likely, they do not. You note that they received chemotherapy earlier in the week. What is your assessment? Do you consider febrile neutropenia?

I remember taking a patient with febrile neutropenia to the emergency department. Besides malaise, one extremity was red, swollen, and hot to touch. The patient’s blood pressure was low, but still within normal limits, and the temperature was normal for age. I had a difficult time convincing the triage nurse that this patient was experiencing an oncological emergency. Fortunately, the emergency room doctor recognized febrile neutropenia, and the patient received appropriate treatment.

The presentation of febrile neutropenia is often insidious, particularly in the outpatient setting during supportive treatment. However, according to the British Journal of Cancer, not only can it quickly escalate into a medical emergency, but can also lead to a reduction of chemotherapy dosage, resulting in decreased survival rates, particularly for breast cancer patients.

Symptoms of febrile neutropenia can be subtle. Often, the only symptom is a fever in a patient at risk, but in severe cases, the patient may be unable to mount a febrile response. Fever is defined as a single temperature of 38.0°C (100.5°F) or a sustained temperature of 38.0°C for over an hour.

So, when should a nurse suspect that an oncology patient has febrile neutropenia?

Common signs and symptoms of infection are:

  • Fever over 38.0°C (100.5°F)
  • Red, swollen areas of skin, especially on the legs and arms
  • Chills or rigor
  • Sweating
  • Cough or shortness of breath
  • Sore throat or sores in mouth
  • Loose or liquid stools
  • Increased urinary frequency, burning sensation, or bloody urine
  • Unusual vaginal drainage or itching
  • Flu-like symptoms, such as head and/or body aches, and general fatigue

Any of the above symptoms presenting in an oncology patient require immediate notification of the oncologist or oncology nurse practitioner for laboratory tests, and prophylactic, broad spectrum antibiotics, or antifungals. Hospital admission should be considered based on the patient’s presentation, and risk factors.

Patients and their caregivers must be instructed to call their oncology office immediately, day or night, if these symptoms occur at home.

What barriers have you experienced in recognition or treatment of febrile neutropenia?

Thoughts on Cancer Depression

Kaboom (2003) ceramic, raku, glaze Artist: JParadisi photo: David Forinash

      An oncology patient came in on a low ebb last week. His treatment was long, the fatigue bad, and he told me this was not one of his better days, he was depressed. People going through cancer treatment know there are good days, not so good days, and “today I’m going to lie in bed in fetal position with the blankets pulled over my head” days. He talked out his feelings with me, and said he felt better about things before he left.

     Most cancer patients, including myself, chant the same mantra throughout treatment:  “I just want my life back.” Once remission occurs, and treatment is completed, we think everything will go back to the way it was before B.C. (Before Cancer). Later, we realize that our lives, as we knew them, don’t really exist anymore.

     I was in treatment for breast cancer about 18 months. Previously, I’d enjoyed my house, gardens, and my life before cancer.  After treatment, however, I was only partially joking when I’d say, “If I could afford to be frivolous, I’d light a match, and burn it all down.” There was something cleansing about the idea of fire.
     Anyway, because I’m a nurse, and because I’ve watched others go through life-changing events, I waited it out, and stayed in the house for another year or so. When I still felt like burning it down, instead, I gave away or sold most of my possessions, sold the house, and moved into a new, modified version of my life, which I feel expresses the changes I experienced more clearly. Not everyone is able to change their life so drastically, nor should they, but it’s been almost 10 years now, and I have no regrets. I wasn’t experiencing depression after treatment; it was profound introspection, the gift that sometimes comes from having one’s life footing shaken.
     The caveat given to me by another survivor is this: “You are allowed to lie in bed in fetal position with the blankets over your head for 3 days, after that, you have to call for help.”