From Caregivers, for Caregivers: Lessons Learned in Cancer Care

For Geoff Hackman and Paul Leleck, who lost their wives to colon cancer in the last two years, sharing what they’ve learned with fellow caregivers is a mission borne out of both love and sheer practicality. “Our stories are success stories,” they said as they passed on personal and pragmatic advice.

Geoff and Paul recently held a workshop, “Organizing Cancer Care,” at the Ruesch Center Symposium 2013 in Washington. The pair discussed the importance of keeping detailed records, ongoing advocacy and communication with the health care team, “organizing the village” to help and a positive attitude.

On keeping detailed records, the pair put together a brief guide for caregivers, outlining key information to record and have at the ready at all times. “Keeping track of – and bringing with us – the critical records were absolutely key,” said Geoff, going on to advise, “Every visit, every chemo, surgery, scan… keep a record of it all and bring with you records of the labs, surgery and pathology reports, clinical trial and scan reports, all test reports from the past three months. That way, whether it’s hospital to hospital or doctor to doctor, they all have the information close to them. Also important, keep a notebook to track everything so you have the history – and update, update, update.”

On being your own advocate and communicating with the health care team, Paul noted, “Don’t be afraid to be part of the team,” going on to encourage caregivers and patients, “Challenge respectfully. Cancer’s not an exact science – it’s not 2-and-2-is-4.” Geoff added,
 “I tried to learn as much as I could about our enemy,” going on to advise, “Before your next appointment, put your questions and reminders about history in writing – [the medical team] will get it right if they have something to read.”

On “organizing the village” to help, the team acknowledged that balancing concerned relatives’ and friends’ questions and offers to help with the primary caregiver’s need to maintain a firm handle on their loved one’s day to day needs can be a challenge. “Someone has to be in charge of the village – but be tolerant and never lose sight of the fact that family and friends are doing it all out of love and concern,” said Paul. Also key: Make sure that someone accompanies the patient to every appointment. “It’s so important to have four ears and four eyes there – as you’re asking the questions, if possible, have both of you write down the answers you’re getting, compare notes afterward and prepare for your next visit,” said Geoff.

On keeping a positive attitude, Geoff and Paul encouraged finding a new balance and infusing elements of fun. “I know it sounds like an oxymoron,” said Paul. “But try to do something that’s enjoyable if that’s possible – we made plans to go to a restaurant after a doctor’s visit, we traveled to Italy for two weeks.” Geoff added, “After a surgery made us cancel a riverboat cruise, Sue said, ‘From now on, they can schedule their damn therapies around our travel!’  And that’s what we did.”

The team concluded their workshop with a discussion with Dr. Brandon Smaglo, an oncologist at The Ruesch Center, about seeking a second opinion. “You’ll never hurt our feelings about seeking a second opinion – you have to be comfortable with your doctor,” said Dr. Smaglo, going on to say, “If you do get a second opinion, please do let us know. Together [with the second medical team], we can make decisions that are best for the patient.”

 CLICK HERE TO VIEW SAMPLE MEDICAL HISTORY DOCUMENT

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