A year ago, a few weeks after my lung cancer diagnosis, I had a four-hour surgery to remove a tumor in my femur. A 15” titanium rod was inserted in my femur to prevent breakage. On Jan 1, 2020  I awoke that morning in my private room shivering. A nurse walked in and I asked “What happened? It’s freezing in here. Is this the morgue?” She laughed sheepishly, noting that someone set the thermostat to 63.    

 Lesson 1: It feels better to laugh and make people smile.  

As the months went on, I had high dose radiation to my brain as well as my femur. A year later, between chemo/immunotherapy, surgery and radiation,  I’m thrilled I’ve been able to keep the illness from progressing. My lung tumors have reduced by 75% and I have no head or femur tumors. 

This spring I was able to tend my vegetable garden and do the outside chores that I love doing. I also was able to enjoy my local pool with Elaine, soak in the sun and play my guitar and harmonica.

I also was able to visit my cousins and aunts to brighten the summer. 

Lesson 2: Don’t count the days, make the days count.   

Being a lung cancer survivor,  (one year plus) I also decided to volunteer at Cancer Hope Network as a mentor to people that need help, support and have questions about their illness. It’s very rewarding and I thank my CHN mentor, Pat, RIP.  

Lesson 3: Do what makes you happy. 

To say I’m grateful is an understatement. For me personally 2020 was a win with my current health. Even having to be treated every three weeks with chemo (for life) with scans ever three months, numerous blood test and side effects, I’ve adapted to my reality.  

I did have to go through the sadness of losing my aunt to COVID and my cancer mentor, as 2020 was difficult for so many. 

I hope and pray for my family and friends that we can be reunited again soon with warm hugs and kisses. (not virtual)  

Lesson 4: Cancer didn’t bring me to my knees, it brought me to my feet. 

The post Looking back, looking forward: four lessons from 2020 appeared first on Cancer Hope Network.

Lung cancer survivor Ellen’s commitment to patient advocacy is hard-won. A non-smoker, she was diagnosed with ALK + adenocarcinoma in 2016 after nearly 7 years of waiting and inconclusive tests. “I was under the care of a pulmonologist and an internist. I went to my spine specialist because of back pain and he noticed the nodule we’d been watching had grown. My diagnosis was an incidental finding.” 

Now, she’s helping other lung cancer patients find hope and support.

“I tell people now, if you have a nodule and they haven’t really followed up, don’t accept that. If you’re still concerned, insist that you go and have it checked again. I’m a perfect example of being told not to worry, that I’m low risk and a nonsmoker. Listen to the warning signs, go with your gut.” 

When people say awful things

Like so many others fighting lung cancer, Ellen’s diagnosis was met with a barrage of insensitive comments – from people telling her daughter “I didn’t know your mother smoked,” to the repeated assumption that Ellen had brought on her cancer fight because she’d “done something reckless.” She initially felt a need to defend herself: “I had lung cancer, but never smoked.” She is grateful that growing education has made those reactions less common. “Women who have breast cancer don’t make excuses or have to justify having cancer. Neither do I.” 

Finding hope with a peer mentor

Ellen called Cancer Hope Network in the terrifying first days of her diagnosis and was connected to two volunteers as she went through treatment with chemo and surgery. Their lung cancer support conversations were helpful, but she wanted to connect with someone whose diagnosis mirrored hers more exactly. “I made a vow to myself that if I could get past that year, I wanted to give back and to make sure that someone else who felt the way I did in that moment would have someone who’d been there.”  

Request a free and confidential peer match.

Four years ago, she fulfilled that vow, completing training and making her first match as a lung cancer support volunteer for Cancer Hope Network. It’s a relationship that continues to this day. Other times, she’ll connect with a patient who only need a call or two to provide hope.  She’s completed nearly 100 match visits..  

 “I feel a sense of satisfaction when I hang up and know they feel a little better,” she says. “Both of us are getting a lot out of it. I feel satisfaction being able to share my experiences and compare with theirs. We find out there are so many similarities. You can be so very different in personality or life circumstance, but there is a common element. Once we start talking, it’s very easy. There’s a flow.” 

She recalls a CHN Volunteer celebration where she shared a table with a fellow lung cancer survivor who was 12 years post-diagnosis. “It was so hopeful to see people who were further along than I am. Now, I’m giving that to people. They’re just going through the beginning of it and they can see their future when they see that I’m doing ok.”  

Becoming a CHN peer mentor

By nature a worrier (“This is the worst possible thing to happen to a worrier!”), cancer was an opportunity for Ellen to reevaluate. “Now, I’m trying to take each day as it comes. Even with my doctors, I don’t want to get too much ahead of myself. When I’m feeling good, I embrace the happiness, I look forward to things. I try not to spend too much time thinking negatively because it affects me physically.”  (READ: longterm rare cancer survivor Donna on practicing gratitude.)

She encourages her matches with a mix of practical suggestions (“Keep notes about treatments and tests and how you’re feeling in a book. It makes it easier to go back and remember. It helps you to focus on what’s most important when you’re with your oncologist. And it helps keep you from seeming like a hypochondriac when chemo brain has you forgetting what you’ve said.”). She also offers thoughts on the larger picture (“Anything traumatic you go through, hopefully you learn lessons for when things are better. One of the keys to my recovery was having people around lifting me up when I was down.”) 

Become a lung cancer survivor mentor.

She’s focused on providing practical support when people are in need – answering and making calls to  matches with the lightning speed of an expert realtor – and remembering that just checking in can make a big difference. “When I got sick, many of my friendships changed. People always say that you find out who your friends are when bad things happen. I didn’t think about it much until I got sick.” 

Ellen was astonished when close friends stepped away. She was encouraged as other, less “likely” friends stepped up to provide support and comfort. (She’s not the only one to feel shocking isolation after diagnosis. READ: Support Volunteer Joe on the importance of friendship.)“I take my friendships more seriously now. I choose more carefully. I want to be with people that I enjoy being with, who I have found are my true friends.”  

Life after lung cancer

Ellen has found happiness, despite the trauma of diagnosis and treatment. “Everything is better now. Having gone through the darkness and feeling better makes me appreciate life more. People used to tell me ‘don’t sweat the small stuff’ and I found that easier said than done. Now, I have perspective when things start to bother me, when I start to get upset about things I don’t have control over, I remember how fortunate I am.” 

“I’m really very happy that I volunteered. Some of my friends have asked if I think it’s helping me. I feel better helping someone. There’s a reason that it happened. I’m getting something out of it – I’m helping someone else.” 

To learn more about volunteering, or to sign up for the join LCRF/Cancer Hope Network volunteer training session on September 22, 2022, contact Rachel DiQuattro at 908.879.4039 or visit  cancerhopenetwork.org/volunteer.

The post Adenocarcinoma Survivor Ellen on the importance of helping others. appeared first on Cancer Hope Network.

Today I would love to share an excerpt from my book. It is from the chapter titled Money vs. Memories. During my dad’s journey, I would share my story via social media and this is a post I made in March of 2015 while caregiving for my dad and also my grandfather at the time.

“It feels like I’ve been living in healthcare facilities over the last few months. I come home in the evenings just to sleep, and alas, my 6am alarm goes off, and I’m off again. Eating poorly, always exhausted, and spending what money I have left, on gas, coffees and whatever I need to make the people that mean the most to me, more comfortable.

Two years ago, I made the easy decision to basically become a full time caregiver for my family. This morning was spent with my dad, and this afternoon was spent at a different location with my grandfather. I’m broke…. I’m tired…. I have no life….. and I wouldn’t have it any other way.

I haven’t worked much in the last year or so. Haven’t been able to take jobs I know would require a few days, nor have I been able to seek out new work. The opportunities are out there, but I prefer to spend time with my family.

I write this post, not looking for any sort of pat on the back, but to hopefully motivate those who might be questioning what to do about their situation, as well as provide reassurance to those who are doing the same as I, that they are doing the right thing.

I sat at my dad’s bedside for about six hours this morning. He was probably sleeping for about five of them. Every so often, waking up to ask me to get him a drink of water, or to fix his sheets. I sat there wondering about the incredible or high paying jobs I was missing out on, but I also knew that there will always be time to make money, always be opportunities out there, but the days where I can get my dad a drink, or fix his sheets will soon come to an end. There’s no amount of money that will replace these moments I have with him. Even though he’s sleeping, I know he realizes I’m by his side, and he’s not alone.

This brings me to now, where I spend my afternoons with my grandfather. Today he turns 89! Every year I bring him a balloon, birthday card, scratch tickets and a 6-pack of Labatt 50, although this year I had to bring him a 6-pack of his favorite donuts instead. Coming straight from seeing my dad, I am tired, hungry, and wound up what change I could find in my pocket to buy a chocolate bar for lunch. I read on Facebook about all the amazing and expensive things people are buying. The new, over-sized houses they are buying and the cars that the banks will take from them in four years. I look down at my chocolate lunch and realize how lucky I actually am. I might not have a ton of ‘assets’, but I got to celebrate my grandfather’s 89th birthday with him today. The smile on his face as I walked in holding his balloon and gift, is what makes my decision to give up my life for them, worth it.

When I look back on all of this, I will never have one day of regret. I urge all of you to take a look at this “busy” life we all strive for and to take a look at what your end goal is. If it’s money related, I promise you that you’ll one day end up miserable.

Making money is way easier than making memories. You can always make money, but you might not always be able to make memories. I challenge you to cut back on your work this weekend, and spend it with your family and friends. Make someone dinner. Play video games with your kids. Go see your parents. Money doesn’t care about us, so why do we care about it more than our families?
If family isn’t on the top of your list, then happiness is definitely on your bottom.”

If you would like to learn more about my book, you can head to www.mydadgotsick.com. Taken from the book, here is a brief description about it:

This book is an outline of my experiences while taking care of my dad, both physically and mentally, during his battle with cancer. It is a tool designed to help those in similar positions navigate coping, self-awareness, empathy, compassion, self-care, support, education, commitment, grief, love and embracing the day-to-day reality of caregiving.

Although very cancer-specific, these words can provide encouragement to all those questioning whether or not to take on the role of caregiver. I did my best to write the book I was looking for when my journey began in early 2013. I don’t have any ‘top 10’ pieces of advice to offer, and any advice I do give is solely based off what was found to work successfully for my dad. I’m not a doctor, and I don’t have any professional medical training whatsoever. At the time this story began I was just a son doing everything possible for my best friend – I educated myself on the run.

Thank you for reading and best of luck on your journey if you are a caregiver.
Jay Perry

The post My Dad Got Sick: Money vs. Memories appeared first on Cancer Hope Network.

Both loved to travel and they began accepting assignments around the world. Two daughters (one born in India and the next in Thailand) soon joined the globe-trotting family.

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“We’d lived in seven different countries before Vera was diagnosed,” Rodney recalls. “With friends and family spread across Africa, Asia, Singapore and the US, we found it helpful and rewarding to share her experience online and via social media. We got a lot positive feedback and it was very uplifting.”

Like many lung cancer patients, Vera’s symptoms were easily missed. A healthy non-smoker, when she first went to her doctor, he diagnosed allergies and suggested an over the counter remedy. Sadly, her late diagnosis meant that the cancer had metastasized to her brain.

“We were fortunate to live in Houston at the time. They have one of the best cancer hospitals in the world and we were able to go into several clinical trials and a course of immunotherapy. The expert care and wonderful support system around us allowed Vera to live the last three years of her life to the fullest.”

Accepting help

“Nothing prepares you for these kinds of situations. You think you are strong and you can do it for yourself. But you need a lot of help. Use the support around you.” Rodney encourages caregivers to cut themselves a little slack. “There’s no dress rehearsal. You will make mistakes. You have to learn very quickly from those and move forward.”

“We were very blessed to have wonderful hospitals and doctors and friends. But cancer is very complicated. It’s not the same for everyone and people struggle with what to do. And if it’s very aggressive, you have even less time to figure out what’s going on.”

Connect with a cancer caregiver support mentor

Giving help

He sees it as his mission to provide the practical information that caregivers need. “I can tell them things that even a doctor won’t tell them. I can tell them that I went through this with my wife and I truly understand what they’re going through.”

He knows the ups and downs of life as a caregiver all too well. “Just do the best you can. Trust your judgement and move forward. Don’t regret what you have done or not done. You did the best you could in the situation.”

For Rodney, the grieving process began when Vera was diagnosed – and intensified after she passed. “My style of grieving was that I was caring for her when she was sick. We had a pact that we would stay strong no matter what. We did that as best as we could. But after she passed away, a lot of things changed. Talking does not prepare you.”

Rodney recently remarried – a decision he knew Vera would approve. “We never had the ‘moving on’ conversation. We didn’t feel the need to discuss it and kept our focus on the present. I know that if I’d asked her, she’d have told me ‘You need companionship. Go and find the girl you will love and cherish for the rest of your life.’” That worked for them – but he recognizes different approaches work for different couples. “I have a friend whose wife was giving him a to-do list of instructions about what to do when she was gone – and others saying that their spouse should grieve for a certain period of time. Each couple has to find what works for them.”

Learn more about volunteering as a cancer caregiver mentor.

Rodney sees his work as a volunteer as a continuation of the love he and Vera shared.
“Vera would want me to do this. I know deep in my heart that she would want me to be a volunteer because she would do it herself. It’s also part of my healing. Volunteering is an opportunity to honor her memory – to talk about her and tell people how brave and wonderful she was.”

The post A different kind of love story appeared first on Cancer Hope Network.