CAREGIVERS OF CANCER: “Take Time for Yourself”

Cameron Von St. James with Lily and Heather

Name: Cameron Von St. James
Relation to patient: Husband to Heather
Child’s names and age: Lily, 7 years
Location: St. Paul, MN
Patient’s Diagnosis: Pleural mesothelioma
Treatments: Extrapleural pneumonectomy, radiation & chemotherapy. An extrapleural pneumonectomy (EPP) is the removal of the diseased (left) lung, the pleura (lung lining), part of the pericardium (the lining of the heart) and the left half of the diaphragm (the muscle that separates the chest and abdomen).
Patient’s current status: Cancer free – will be celebrating 7 years on February 2nd 2013!
Twitter handle: @vonstjames
Blog: http://www.mesothelioma.com/blog/authors/cameron/Parenting with Cancer: What’s the first thing you thought of when your wife was diagnosed?

Cameron: I was stunned. Three-and-a-half months prior to my wife’s malignant pleural mesothelioma diagnosis, we had just celebrated the birth of our only child, our daughter Lily. I thought I would be celebrating Lily’s birth and the start of our family; settling into my new life as a father.

The FIRST thing I thought of when I learned about my wife’s cancer was “Get us to Boston.” Our doctor had given us three choices of where to go for continuing our fight against the cancer, and Boston was what I considered at the time (and still do) our best option for beating the disease. I also knew at that moment, no matter what happened, that I would no longer be the same person. I knew the experience was going to change my life, I was just afraid it would be for the worst.

PWC: How did you tell your daughter that her mom had had cancer? 

Cameron: Our daughter Lily has always known about Heather’s cancer. I still find it strange to think her mother has been fighting mesothelioma her whole life. It is the only life she has known.

PWC: What’s the best thing someone did for you or your family to help during cancer?

“ I knew the experience was going to change my life, I was just afraid it would be for the worst.”

Cameron: Wow, I don’t know where to begin. We have been blessed to be surrounded by so many wonderful, caring people it is hard to know where to begin. There were two benefits thrown for us. Numerous people offered help in so many ways; from family and friends to complete strangers. I have been blown away time-and-time again by their kindness and generosity. There wasn’t one best thing. The best thing was everything, all the help and support we received. I don’t know how my wife and I would have made it through such a difficult time without this support.

PWC: What’s the best thing someone said to you about caring for a cancer patient?

Cameron: The best bit of advice I received was from a stranger at one of our benefits. He had come across a flyer advertising it, and decided to stop by. Years earlier, his wife had been diagnosed with cancer. After the experience, he vowed to go to every benefit he came across just to stop by and help in any way he could. He introduced himself and we struck up a conversation. The one bit of advice he gave me was, “If anyone offers you help, take it. It’s one less thing for you to deal with, big or little, and it should remind you that you are loved. You are surrounded by people who care enough about you to help.” And he was right! It helps lower the stress levels too.

PWC: What piece of advice would you give a parent is taking care of someone who was just diagnosed?

Cameron: Take time out for yourself! Allow yourself to be human, to make mistakes, to have bad days. We all do. Take a moment to cry or yell or what ever you need to do. Then take a moment to recover and move on. We can’t give 100% of ourselves 100% of the time. To be your best, and to give the best care as both a parent and a caregiver, you need to take time out for yourself. I see this commonly in caregiver parents. They feel guilty if they take any time “off” for themselves. They become so run-down and tired that they are no longer effective as either a parent or a caregiver.

PWC: What’s been the hardest part about the cancer/cancer treatments?

“If anyone offers you help, take it. It’s one less thing for you to deal with, big or little, and it should remind you that you are loved.”

Cameron: The chaos and uncertainty. I went from being able to plan my life months or years in advance to one where I planned from one doctor’s appointment to another. Never knowing what the next test results were going to be…. good news or bad. I had a hard time picturing what my life was going to be like from one week to the next. Oh yeah, and I was a new father with a 3½ month baby girl! Crap, I wasn’t prepared for this.

PWC: What has helped your daughter through this tough time?

Cameron: Our families. Our families helped us raise our daughter. They cared for her while my wife and I were in Boston for treatment, while my wife was recovering from surgery and I was working, trying to pay the bills and catch up. To this day, they still play an important part of our daughter’s life. My wife and I are thrilled at the bonds and relationships our daughter has formed with our families.

PWC: What keeps you awake at night?

Cameron: Sand in the bed from the dog’s feet and maybe spiders, the big hairy ones!

PWC: What is the hardest part about being a caregiver of a cancer patient, especially with kids?

Cameron: It’s probably unlike any experience you have ever had before. It’s chaotic, it’s stressful, and you just can’t quit or walk away. There are times that you are not going to feel in control of your life, and it can go on for a long time.

PWC: How do you feel when someone calls you or the patient an “inspiration”?

Cameron: I think I still blush, and I am honored. I love to hear when the advise I offer has helped or when others find inspiration in my story or work. Thank you.

PWC: Which online resources do you recommend parents with cancer go for information, support and sanity?

Cameron: I have just started to venture from my usual social groups/sites, which are focused on mesothelioma and asbestos related diseases to social sites and blogs that are not specific to mesothelioma. I am continually finding useful sites and resources however I don’t feel I have explored enough to have what I would call a “recommended” list of resources. There are many out there and it shouldn’t take too much looking to find a social media site or support group that can help.

PWC: What else would you like parents with cancer and/or their caregivers to know about you and your experience?

Besides being a husband and caregiver to my wife Heather, I was a caregiver for my father in the later years of his life while he was dealing with Alzheimer’s and Parkinson’s as well as starting to help care for an aging mother. Oh, and I love my wife’s favorite saying. “Life’s a banquet and most poor suckers are starving to death!” -from the film, Auntie Mame.