RANDY’S STORY
Posted October 30, 2005
“My wife has been fighting for 2.5 years and a good friend of mine had the surgical removal of a tumor about a year ago. My wife and I smoked; our friend did not smoke- that is what i tell people. This disease does not discriminate and people need to know that. Did Dana Reeve smoke like Peter Jennings did? ”
Randy was a spousal caregiver for his wife, Deb, who was living with advanced lung cancer. I remember his energy and encouragement. He was always so positive and helpful. I crown “RandyW” as one of the original stewards of the Lung Cancer Support Community. He made over 8,000 posts of encouragement and information for the tens of thousands of online users we had from 2005-2016 (and continues his support on the Facebook social platform today). Randy also had a playful side. He would moderate the “Just for Fun” section and suddenly a virtual party bus was coming by to pick each of us up in our states and we would have mindless fun to combat all the stress.Randy is an advocate. He may argue with that, but I am absolutely certain that his informative posts and encouragement from behind the computer screen inspired and empowered others.He was the first caregiver to combat the stigma around smoking on the internet. He would post what we were all thinking- regardless of smoking history or lifestyle choices, no one deserves to die from cancer.
Randy lost his wife Deb, in January of 2006. He then stayed on the message board 10 additional years to encourage others, post the latest research news and share his first-hand knowledge of cancer caregiving and grieving.He was part of our support system and a virtual friend to all.I asked Randy why he stayed on after his wife died. To him, the act of helping others, helped him too. It was a way for him to honor the memory of his wife. Also, he worried about his own health and knew that being informed and up to date on medical treatments may help him some time in the future.
“I’m a former smoker, so, I worry to this day, about my lungs and heart. My wife died from smoking related nsclc (lung cancer), my mom, a former smoker, died from copd. It goes through my mind a lot, if I have a coughing fit, or don’t feel good.”
“The message board (members) taught me about doing research, and digging for advocacy help for others. Boards also allowed escapes from reality with weekly chats, and other forums. A way to learn how to deal with grief from other caregivers and patients also. We had laughs, tears, encouragement, poetry, life insights, research. “
“Always keep a positive attitude you have to think that this can be beat. Be supportive. Be a fighter. I do research online before Onc appts. I always think that this can be beaten and cured. There is nothing for my wife and I to fight about and that includes money. We ain't got much but after 9 years of marriage and 2.5 years of fighting the Lung cancer we have each other. We are still fighting this disease. Believe in the power of prayer; I say a prayer every night. I am the caretaker for my wife. I hope this helps even a little bit.”
After Randy lost his spouse, he continued posting and offering comfort and encouragement to others. If there was a new clinical trial or study that related to the membership, he would be the first to post and share about it. He encouraged caregivers to advocate for their loved one and to never stop asking questions.
Randy “met” Tina on the message boards. They were both spousal caregivers and experiencing a lot of the same things. Everyone learned to lean on Randy. His energetic posts and informative research taught us a lot about lung cancer and treatment options. I learned about clinical trials from his posts!
“Randy was the researcher that I relied on for all the latest treatments and clinical trials. He was a Godsend!”
TINA’S STORY
Posted June 6, 2004
“I just found this site this evening. My husband was diagnosed in January 2004 after developing blood clots in his lungs--from the tumors. He has had Gemzar/Carbo and radiation. We had to push for the radiation because he was stage IV. Turns out he had a couple of very small spots in his lower right lung that may or may not be mets. He has responded very well to the radiation and chemo. and the tumors shrunk by 50%. He is currently awaiting another set of CTs in mid-June. We are praying for continued healing. It is so good to find a site with so many supportive people!”
Tina joined the message boards shortly after her husband Charlie’s diagnosis. She would post book recommendations and links to supportive resources. She was also virtually along for the ride every time the Party Bus came through the Just for Fun forum!
Like Randy, Tina’s spouse eventually succumbed to cancer. Tina says she transitioned from grieving to a “giving” role to provide some of her experiences dealing with the things that come up when you are caring for someone with cancer. She wanted to give people hope and encouragement. And with the passing of time, more treatment options were developed, which meant a better chance to survive.
“The message board brought all of us together—patients and caregivers. It helped me to cope better with my emotions by sharing on the message board, to more effectively relate to my ill husband, and how to be a better caregiver. It also provided a way to share our experiences and be better prepared for some complications.”
Tina recommends staying in touch with your support system if it isn’t too painful. Helping others deal with their cancer situation can be healing too. She also recommends attending a (specific—cancer, spouse, etc.) support group for several weeks and months. She says working through grief never goes away, but taking time for yourself is important.
Tina created a local support organization in memory of her husband, held and attended walks, runs and vigils and participated in lunch and learn events. She was also a vital member of our peer mentor program.
Eventually, technology and innovation would provide us with many social platforms and shiny new tools and resources. The message boards of yesterday are cumbersome and just unnecessary now.
There’s Facebook with its endless community groups and private forums. ZOOM events and meetings; X (formerly known as Twitter), hosts a vibrant oncology community and there are many cancer-related APPS to download on our smart phones!
Today you can video chat with anyone with just a few clicks!
RANDY AND TINA’S STORY
Like most of the members of the message board, Randy and Tina offered advice, support and compassion in their posts and replies. In 2011, Tina travelled to Greensboro to attend a cancer walk and she meet Randy in person. Tina says it was a nice visit and they stayed online friends.
Life was busy. She had daughters to raise; he cared for aging ill parents. Every now and again they would reconnect online- like old friends do. It was another 9 years before they would see each other again. This time it felt different. Tina asked Randy to lunch and things just fell into place.
“Randy and I met on a January day 14 years after we lost our spouses. By the next January we were at the Knox County Courthouse getting married by the Court Clerk (because of Covid) and then a formal family wedding in May.” Tina said.
“Hmmm… we met before our spouses passed away. We lived about 4 and a half hours away from each other. I would drive to Tenn. on a day or weekend off to visit Tina. She visited when she could when I was in NC. I think she got tired of bad dates. I didn’t date except once or twice. I was thrown into taking care of aging parents, after Deb passed, and so did she. We lost both parents before we dated. But we kept up on social media. I watched her kids grow up and grow in their lives on Facebook. I had a widow maker heart attack right before Covid started. She came to visit, and I told her before she left, I didn’t feel good. She said go to ER. I called her from cardiac unit at hospital, she came back the very next morning when sun came up. That’s when ya know it works!” Said Randy.
Both Tina and Randy raise awareness about cancer when they can online.
Randy says they are enjoying being a newly married couple and all the things that come with that.
“Right now, life is good. I’ve gotten to thinking about myself, and not having to keep notes and appointments all the time. I know some day, I’ll either have to be a caretaker, or have a caretaker… so for now kick back, enjoying a new life with a wonderful wife.”
If you've been impacted by lung cancer, you don't have to face it alone.
Connect with me and join us @ Lung Cancer Survivorship Nework.