Again and again, it’s brought home to me the challenges faced by carers and family members when someone they love is diagnosed with cancer. And support can feel pretty thin on the ground, as all focus is often on the person diagnosed. But our own family’s experience taught me how vital it is for all those directly affected by a cancer diagnosis be they family or friends to have access to adequate support. It was almost four years after my diagnosis of lymphoma we became aware Ben was not only clinically depressed, but self-medicating with alcohol. Long after I’d gone into remission, we faced new challenges as Ben dealt with his alcoholism and we very almost divorced. Our “battle with cancer” wasn’t limited to just my being sick. My diagnosis kicked off a chain of events which still has a legacy in our lives.
Todays guest post is from Cameron Von St. James from the Mesothelioma Cancer Alliance, who’s wife Heather was diagnosed with mesothelioma. Cameron and Heathers story really brings home the impacts cancer can have on family. A huge thank you to Cameron for his contribution, and for sharing his and Heathers journey.
Cameron and Heather Von St. James – A Caregivers Story
“My wife, Heather and I started talking recently about her diagnosis with mesothelioma, and she wanted to know what it felt like to from my perspective. While it was difficult at first for either of us to talk about those feelings, we felt it was a positive step, to see what strategies we’d both used to cope.
“Just three months before the date of her diagnosis, we had one of our best days ever, bringing our beautiful daughter Lily into the world , our first and only child. I was ecstatic. However, the happiness soon turned to fear, and then anger when the doctors told me my wife had mesothelioma. I looked at my wife, crying, wondered how on earth we would get through it.
“At first, I was full of anger. I couldn’t believe that this had happened just after we’d been given the gift of our beautiful daughter. However, doctors really don’t let you deliberate too long – we needed to discuss treatment options. I soon realized we were going to have to make some difficult decisions. I wasn’t ready, but the conversation about our options brought me back to reality. How were we going to get through this? What was the plan? That was the first of many times that I felt my head spinning and still had to make a choice I could never have imagined I’d be making .
“As well as my confusion about our options, my emotions were out of control as well. In private and in public, I went through phases of anger, sadness and fear. I didn’t have any way to handle myself at first, and I often lashed out without thinking. However, in my heart, I know that wasn’t the person I wanted to be. I had to be stronger, for my wife and Lily, but also for my own sanity. I had to be there for my family and continue to support them the best way that I possibly could, being their source of optimism and strength.
“There were several to-do lists at first, and it seemed impossible to get through them all at times. While I cared for Lily and our family pets, there were travel plans, hospital times and of course, work. I learned quickly some things were going to come first, and other things would take more time to sort out. I learned to focus on the tasks that needed to get done. One thing that became apparent was how much our family was loved by others. Many people came alongside to help us, and I realized just how blessed we were. So many people wanted to be a part of our experience just by helping.
“As Heather was going through this battle for her life, she couldn’t know what I was going through at that time. I didn’t want her to know, really. Moreover, I wanted her to feel that everything that was okay, that she didn’t have to worry about anything other than getting through her mesothelioma treatment. After her surgery in Boston, Heather went to stay with her parents in South Dakota, where Lily had been during the surgery. Heather went into recovery mode and also prepped for the next treatment phase – chemotherapy and radiation. During this period, I only saw my daughter and wife one time.
“On a Friday directly after work, I decided to drive 11 hours to South Dakota. I didn’t expect to go through a snowstorm in the middle of the night. As I tried to sleep in my car while the plows cleared the roads, I wondered if I was going to get any time with them before coming back for work on Monday morning. The clouds parted and I found myself in South Dakota on Saturday, spending the rest of the day with my wife and daughter, and a few hours on the Sunday, before I headed back. These were moments that I cherished. While it was difficult, I’ve never looked back at this time and wondered what I would have done differently. I don’t have any regrets about the choices that we made, because they were necessary. I was thankful to have the ability to make choices and also still have some control in what was a life-changing and largely uncontrollable situation.
“I learned a lot during this time. I needed help from other people. I took comfort in my ability to make the tough decisions. Now, more than six years later, Heather is still here, healthy and enjoying life with Lily and me. Looking back on everything, it’s an inspiration to me that my wife is so strong, and has been an inspiration to others who have gone through cancer and treatment.”
When we talk about the effects of cancer and treatment, often we’re talking about the person who’s been diagnosed. If a crisis phase kicks in after diagnosis, all eyes are on the person with the cancer, and all support is directed towards helping them. But when cancer comes, it doesn’t just affect the one with the diagnosis.
I suggest family members, close friends and carers access support services for themselves independent of the person with the cancer, if possible. I have seen how carers who accompany the person with the cancer to a support group will often hold back when it comes to sharing their own feelings, because they feel the spotlight ought to be on their loved one rather than themselves.
I recommend carers seek out a support group or counselling service empathic to the issues carers face. The Cancer Council NSW can be contacted on 13 11 20 (within Australia) and can refer you to carer support groups, and other services for carers, as well as providing information on many of the challenges you’ll face. Cancer Coaching is another option – in cancer coaching, I offer a place where carers and those close to a person with cancer can share about the issues they’re facing, debrief and receive some encouragement for the journey ahead.