Any debilitating or life threatening disease, including cancer, causes emotional effects in addition to any physical changes that may occur. This article discusses four separate cancer cases, because the reaction of friends, family, and others are always unique. Furthermore, signs and symptoms present differently in various cancers and treatments. Thus, sometimes it’s very evident a person is battling cancer, whereas other times it’s a hidden battle.
This shouldn’t be considered a training manual for how to deal with the social and emotional aspects of cancer or any chronic or terminal illness. Instead, it’s an overview of what some others have gone through. Thus, if you or someone you know is battling cancer, you are not alone.
We’ve talked about Becky Hill in our interview with her called “Cancer Sucks.” Becky, the Chief Financial Officer of Advanced Mobile Healthcare, was diagnosed with Stage III lung cancer this year and is currently in treatment.
Frankie Viturello had already beaten cancer once. Unfortunately, this week he was diagnosed with a relapse. Frankie is married, and among his many things, is somewhat of a public figure. He’s a podcaster for Digital Press.
One of our most candid interviewees, Christine, was diagnosed in 2011 with Stage IV malignant schwannoma, which had spread to her brain, liver, and kidneys. Christine is a single mother of two.
If you follow of the Healthcare Insights section of the AMH website, you’ve been reading my weekly writings for the company, but I never formally introduced myself. In most cases, I’m just a narrator for our stories, interviews, and many of the educational pieces. My name is Davis Ray Sickmon, Jr, and my cancer was the easiest of any of them on the list: basal cell carcinoma. I also appear (without introduction) in the previous article on cancer.
As discussed in our previous article, the effects of cancer and treatments are varied. In my case, two surgeries resolved the cancer. As mentioned in the cases section above, mine is the easiest to deal with. But, it’s extremely visible.
I’ll admit to be flippant about it. I have a scar that’s similar to a reverse question mark on my face. I’ve even made some fairly good jokes about it, when someone wondered if I had gotten into a fight. I replied, “Yeah, well, you should see the other guy. All that’s left of him would fit into a petri dish.” Humor is often my response to anything. But, because it’s so visible, I had to answer questions about it nearly daily.
Within days, I had answering the “What happened?” down pat. I never mentioned “skin cancer”, because I discovered using the word cancer will bring responses like “Are you okay?” or sympathetic responses. Mine was easy to explain. I had the explanation down to just over a minute to describe how it started out looking like a pimple that wouldn’t go away and turned into an open sore that wouldn’t heal, which lead to two surgeries, a skin flap procedure, and resulted in my beard line right under my eye. They had to use that particular procedure, because a nice straight cut would have made my left eye droop. Basal Cell Carcinoma is a form of cancer with no risk of spreading outside of the area, so I didn’t have to go through chemotherapy or radiation.
Even though it’s been a few years since then, I still have a scar. So, once in awhile people ask about it. I actually think the scar is pretty cool, but I’m somewhat self-conscious about my messed up beard line. So, I’m very careful to keep it properly trimmed to prevent anyone from noticing how it’s different between the two sides of my face.
If you asked me when it happened, I’d probably tell you “awhile back.” Honestly, mine isn’t particularly life changing, except a few lifestyle changes such as staying out of direct sunlight.
However, many cancer patients and survivors have a much longer and more detailed story. While interviewing Becky Hill, for instance, she could give me the dates of everything that happened this year with her lung cancer. With Christine, she was able to tell me the exact day she was diagnosed in 2011. Most cancer patients and survivors will slowly develop a quick set of answers to all the questions people have, even if it’s not a conscious thing. If you’re a female with a bald head and someone strikes up a conversation with you, eventually they may ask about it, which can lead to quite a few questions about your situation.
There’s a couple of ways to look at those questions. Sometimes, it can be viewed as “prying”, as people try and get information out of someone with cancer. You shouldn’t feel compelled to tell someone – even a friend – about your entire experience. Give as much or as little as you want about your situation. If it’s something you don’t want to discuss, you have the right to tell them “I’m sorry, it’s just something I don’t feel comfortable discussing at the moment.” On the other hand, if you are so inclined, you also have a chance to educate someone on the subject. People hear the word “cancer” and tend to fear the worst. The word comes with many preconceived notions, and you have an opportunity to clear those up. But, remember: the choice is entirely up to you.
Then, there’s the awkward questions that come up. “You don’t look sick” was one mentioned in one of the interviews. From the outside, it’s hard to really know what’s going on inside of another human’s body, but people will still make judgements.
When Frankie’s relapse was diagnosed, he informed his friends and family on Facebook with a post that demonstrates a fairly common feeling among cancer patients: guilt.
So, yeah. I’m very sorry to report the results of my recent PET scan were positive (not the good kind of positive). The next step is to have the node biopsied to see how bad things are and determine an appropriate course of treatment.
More than anything I had always hoped I would never have to put my friends and family through this again. I’m so very very sorry to those who will be forced to endure this terrible journey another time.
I talked to Frankie privately after his post, not only as a friend to reassure him not to feel guilty but also to inquire a little further as part of the article. “Crushingly disappointing it is to have a reoccurrence after all the work that went into treatment, surgery, recovery, and the stress it put on my family, wife, and friends. I’ll never not feel personally responsible for that. I’m intelligent enough to know it’s out of my control, but I’m also self aware enough to realize it has a huge impact on the people I care about.”
Many people with chronic illness or cancer feel like a burden, particularly with Frankie’s relapse.
In the case of the loss of a family member to cancer, there’s another type of guilt that can occur: survivor’s guilt. While Christine succeeded in her battle against cancer, her brother wasn’t so fortunate. “I lost my brother to cancer. He had a wife and two kids. He was a great person, a really great person. But it left me questioning why I survived, and he didn’t. He was a great guy, and I still don’t understand why he would be the one to not make it.” Often, it can be summed up in one sentence: “God, why them, instead of me?”
Isolation can come from more than one source, when dealing with cancer. For example, exhaustion caused by certain cancers or cancer treatments such as chemotherapy, can lead to isolation. Even extremely active, social people can become unable to get out and about like the used to. And, unfortunately, some friends are the type, where unless you’re in their face, you’ll be forgotten. It’s a harsh thing for some people to discover.
In addition, a reduced immune system can be another cause of isolation. As the team had gotten more aggressive with her cancer, Christine’s immune system was nearly completely diminished, leaving her in a position where she was unable leave the house for weeks at a time. “One friend would pick up my laundry, wash it, and bring it back every couple of days. When it was at it’s worst, she just left it on the porch for me, just to be careful not to infect me with anything.”
Stigmas and Misconceptions
Christine had once overheard a conversation between others. “She’s gaining weight. There must be something wrong – she supposed to lose weight.” Weight loss is often associated with cancer and cancer treatments, but not all treatments have exactly the same effect. Chemotherapy in some people causes excess fluid retention, intense food cravings, and a number of other possible weight gaining scenarios. Additionally, some patients must take heavy doses of steroids to accompany the chemo treatments.
Unfortunately, cancer isn’t well understood by many people. They know what they’ve seen on TV or Facebook, and assume the situation is always the same with everyone. A great example of this, is to contrast the “chemobrain” between Becky and Christine. Chemobrain is a term used to describe effects on the mind caused by the chemicals used for chemotherapy. It includes everything from slowed reactions to problems with logic to memory. Becky’s didn’t last particularly long, but Christine’s lasted much longer.
As mentioned previously, each of the cancer situations was a little different. Christine’s was considered to be a worst-case scenario. Doctors were having a hard time getting her cancer under control, and in August 2011 she was told she had as little as 3 months left to live.
There’s no right way to deal with this. “You know it’s bad,” Christine said with a chuckle in her voice, “when your ex-husband is suddenly agreeable with you, and works with you.” They laid out a plan together and began trying to prepare the kids for the worst. She planned her funeral. She even began planning to remain a distant voice in her kids’ lives, if she died. She began writing letters to her children in the future at certain milestones and locked them in a safe. “It’s hard to understand what it’s like to write letters to your kids when you’re not sure you’ll be there.” She did what she could financially to assist those she was leaving behind.
Each person deals with a terminal in their own way. In Christine’s case, all of her planning worked out well, and she ended up not having to execute all those plans. In September 2013 she was declared cancer free – over two years from when she was told she only had three months left. “I covered a lot of the bases. My son and daughter’s 16th and 18th birthdays and marriage. Now, when we reach each one of those milestones, I pull out the letter, read it, and burn it.
There’s a chance that a cancer diagnosis will leave you forever changed in some way or another, particularly if it’s an extremely dangerous case.
“It changed me as a person. I used to be very negative. I came to understand the little things matter. Picking up the kids from school, celebrating birthdays, taking them to lunch. I never knew how many more times I’d be able to do it.”
In the case of those with family, it can have long term effects on family members. “My daughter is a different person because of it,” Christine told me. “She’s more caring, more determined. My son was too young to really understand at the time. But, she did the whole ‘I have to be strong’ thing, and some of that has stuck with her.”
I’ll leave you with a parting thought from the end of Christine’s interview: “I don’t want to be known for the person who survived brain cancer. I want to be known for the good things I did. Cancer doesn’t define me – I define it.”
Overall, regardless of diagnosis or prognosis, every person has their own way of coping. Any chronic illness or terminal disease not only affects the body but also the mind. If you’re having significant social or emotional issues caused by any disease, please talk to your medical provider and seek counseling our support groups.[sc name=”disclaimer”]