Cancer Survivor Tech

TON - November/December 2014 Vol 7 No 6
“Necessity…the mother of invention.”

How can I help? It’s a question cancer patients commonly get from family, friends, and supporters during their treatment. Recently, technology developers have begun asking the same question and are increasingly addressing the concerns of cancer patients.

A cancer diagnosis brings challenges for patients above and beyond undertaking a medical treatment regimen while managing their already demanding lives. It is a tidal wave that sucks away their time, energy, and money in its wake. Their supporters seek to ease these burdens for them, but these supporters are often at a loss as to just how or where to fill in. The modern world in “the cloud” is responding to these issues by developing websites, programs, and applications (apps) that cancer patients can use to help themselves in some very big ways.

Communicating With Family and Friends
One of the first and most difficult challenges a cancer patient faces after diagnosis is informing family and friends. I dreaded this so much that I had my husband inform everyone. One by one, he made the calls, buffering me from the “how” and “why” questions of shock. He made those same phone calls to update friends and loved ones after every treatment and surgery. While I was beyond grateful to him for doing this, it certainly wasn’t easy for him. How things have changed!

Thanks to technology, cancer patients today are able to communicate with others in ways that keep them connected, but not exposed. With popular social media sites (like Facebook), one can set the privacy settings or create groups so that select information goes out to only those individuals chosen by the user. Today’s cancer patients have access to websites created specifically for the purpose of opening up communication channels for them. Websites like CaringBridge.org enable cancer patients to write and share blogs of any length or share photos and videos to help friends and loved ones feel connected and aware of the patient’s progress. Messages go out all at once and only to those who have permission to receive such information, saving the author the time and energy that would be required to reach out to each person individually.

Calendar for Chores, Meals, and Errands
Scheduling busy lives is challenging enough when people are well. Accepting assistance with busy schedules requires planning ahead, a task that can be overwhelming when juggling surgeries or cancer treatment with everything else. Technology can help here too. Some communication websites have wonderful features to help with scheduling meals, babysitting, and running errands for the patient and family. I know I could have used this! A dear friend took on the task of organizing these tasks for me and my family. She set us up with 3 to 5 meals after every treatment or surgery. She enlisted friends and neighbors who volunteered to help. She made sure the helpers knew when and where each meal was to be delivered and notified them of my children’s food likes and dislikes. Other friends stepped up to help with carpools and taking the kids for me to give me a break. Some would call and ask if I needed anything when they were at the grocery store. My supporters eased the burden on my husband by taking care of these everyday duties. They also made me feel loved and cared for.

The websites available to help with coordinating these supportive efforts are amazing. Not only do they make it much easier for the organizer, they make it easier for the volunteers to sign on and feel engaged. Almost all supporters can and will find some way to help if the “what, where, and how” are clearly defined for them.

Doctor/Patient Communication
Trying to absorb and comprehend the diagnosis, treatment, and medical instructions in the brief allotted time with the medical team can be a challenge even for those versed on the topic of cancer. Those entirely new to the subject and gripped by fear don’t hear much after those words “You have cancer.”

People used to suggest carrying a notepad with prewritten questions and for taking notes, as well as a folder to store all of a patient’s info, receipts, test results, records, etc. These days, technology frees patients from the burden of having to remember it all and enables them to make the most of their doctors’ visits. Smartphones can be used to record conversations with doctors so that patients can review them later, keep track of upcoming appointments, and snap photos of documents to have on file. There are apps developed for this too.

The LIVESTRONG Cancer Guide and Tracker iPad app was developed to provide easy access to information and tools needed to make informed decisions throughout the cancer journey. The app lets patients store and access information relevant to their treatment and survivorship electronically. In addition, patients learn what to expect, what questions to ask, and where to connect to resources.

Patients are responding positively to institutions that have created online systems for retrieving records, reports, doctors’ notes, treatment schedules, and account information. In an attempt to ease patient anxiety, some doctors utilize graphic computer technology to show patients (in the most pleasant way) procedures and follow-up care that they will undergo.

Prescription Tracking
Many apps have been developed to track medications, vitamins, and supplements. This can be extremely helpful for patients and their caregivers. Most allow patients to input their dosage information and set up reminders to keep track of when to take the medications. The apps provide information about medications, how they work, how they interact with other medications, and how they may affect a person.

Nutrition
Cancer patients and survivors frequently have questions about nutrition. Dana-Farber Cancer Institute created the Ask the Nutritionist: Recipes for Fighting Cancer app to help those interested in eating healthy to find recipes right for them. The app, developed by registered and board-certified dietitians, also offers users the ability to search by common symptoms (such as nausea or mouth sores), helping to customize dietary needs while patients are going through treatment. Not only does the app offer recipes for fighting cancer, it also has an “Ask the Nutritionist” questions-and-answers feature.

Emotional Support
According to my private online focus group for “Empowering Patients and Survivors,” technology’s greatest impact is in connecting patients and survivors with a 24/7 network of support. Many find comfort through social media groups formed on Facebook, Twitter, and cancer website forums, but many apps are also being developed with emotional support for cancer patients and caregivers in mind.

My Cancer Manager, created by the Cancer Support Community, provides cancer patients and caregivers with a unique set of tools for addressing physical, social, and emotional concerns related to living with cancer and its treatment. Patients can monitor their common concerns such as fatigue, difficulty sleeping, sadness, anxiety, and pain. Over time they can track progress with their healthcare team. They can also track potential life worries, such as family, work, money, and nutrition.

Peer Support
Currently in development is a mobile app for cancer peer support called Instapeer. It is an app that “brings 1-to-1 peer connection into the 21st century” for those affected by cancer. Stupid Cancer, an organization specializing in young adult cancer, is the mastermind behind this technology that will match cancer patients around the world via SMS text. Instapeer will enable cancer patients to converse, support, and help one another through living with cancer. The organization believes this technology will especially appeal to the adolescent and young adults that account for 72,000 new cancer diagnoses each year.

Fund-raising
Dealing with a cancer diagnosis is hard enough, but often the financial burden prevents patients from focusing on the real priority, their health. There are few existing financial assistance programs. Sometimes basic needs are met purely through the support of family and friends. To make it easier for those seeking such help from supporters, crowdfunding websites have been developed to help raise funds with relatively little effort or expense. Crowdfunding websites create a win/win situation for friends and family looking for a way to support their loved one while giving an indirect way for the patient to ask for help.

The Role of Oncology Nurses
Technology has come a long way in the past 10 years since my own diagnosis, and this is likely just the beginning of technology’s rapidly expanding role in facilitating support for and easing some of the burdens faced by cancer patients and survivors. The next step is to ensure that information about these resources reaches those that need it, when they need it. As the first point of contact for most of these patients, this is where oncology nurses come in. For a list of websites and apps developed to assist cancer patients and caregivers, go to www.BreastInvestigators.com/con tent/cancer-support-technology. n




Angela Long is the founder and creator of Breast Investigators. Breast Investigators serves as a comprehensive resource guide to help those affected by breast cancer readily gain access to quality information, care, assistance, and support. Visit www.BreastInvestigators.com.

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