Comments From Our Readers- Fall 2016

FRIENDS WERE AN ISLAND OF SUPPORT

Reading Jessie (Jan) Fuger’s letter in CURE®’s Summer 2016 issue titled “Surprised by Disappearing Support Network,” I was not surprised.

My situation is a variation on her experience. I was married for 17 years, happily divorced for a few decades, enjoying being single and then, last year, diagnosed with breast cancer. With the divorce, both my own and my ex-husband’s families disappeared from the scene — no support.

With the diagnosis of cancer, my support came from a small core of long-time friends. My appreciation for their friendship knows no bounds. I can never repay them for their kindness and care. The rest — who dropped me like a hot potato — have been removed from my address book, along with the folks who physically stepped backwards away from me when I told them of the diagnosis. When I returned to my exercise class after completing treatment, a few folks actually seemed disappointed that I had not died!

There is much ignorance in the general population about cancer and cancer survivorship. Despite that, I’m surviving well so far.

- Louise YaleRedwood Valley, California

EXPERIENCING ISOLATION AS CAREGIVER

Thank you to the single woman who wrote “Surprised by Disappearing Support Network.” I completely understand where she is coming from.

Mom was Dad’s caregiver while he suffered and died from cancer. Mom now suffers from Parkinson’s disease, which she has had for over 10 years, and I am her caregiver. My only sibling lives in another state, and Mom’s only sibling lives a few miles from us. Neither offers to help, and one does not contact us at all. What I would give to have some help from someone…anyone.

Just as the prior letter states, everyone says, “If there is anything they can do to help, just ask.” However, that lasts for only a short time. Before I completely stopped working, Mom would tell me that no one ever called to offer help and/or came by to visit. Why is that? I am now experiencing the same thing. At first, people would communicate with me, offering to take Mom to doctors’ appointments. Now, the only time we ever hear from anyone is when we contact them first. And forget their offering to help. Short of begging, I have not figured out how to ask anyone.

Once Mom is gone, I will be that single woman needing a support network. As I now struggle with various injuries as a result of caregiving, who will be there to help me?

- Jan TaylorLouisville, Tennessee

STRESS CAME IN THE FORM OF BILLS

Overall, I found your article about caregiving in the Summer 2016 issue, “Rising to the Challenge,” on point; however, there is one area of caregiving you did not mention.

When my husband had cancer in 2004, I was overwhelmed with the caregiving, travel and appointments, but one of the most stressful issues for me was dealing with the insurance, hospital and doctors’ offices about the mounting bills.

Within a couple weeks of diagnosis, the bills started coming in — in fact, hundreds of bills throughout the first year. Not only did I have to worry about where the money was going to come from, I had to find the time to manage the ever-increasing pile of bills and navigate the health care system. Each bill had to be matched up with a service or appointment, compared to the EOB (explanation of benefits) and paid. I spent hours on the phone haggling and arguing with the insurance company and providers.

It was incredibly stressful. I ending up putting together a spreadsheet to keep myself organized. By the end of the first year it was 23 pages long, single spaced.

On top of everything else I had to deal with, this was an insult I just couldn’t bear some days.

- Jill WeilandGeorgetown, Texas

EXPANDING MOLE? SEE A DOCTOR!

I used to have three brown moles on my neck. I always thought they looked like spots of dirt, so whenever I went out at night, I would put three little dots of makeup on them to make them invisible. One day, I noticed I needed just a little more makeup on one of them.

I asked my son and daughter-in-law, who were straight out of medical school, what they thought. They said the spots were the same color, round and had no abnormal features, but they weren’t dermatologists, so they recommended that I see one.

I waited six months, during which I attended a medical conference for patients on different topics, and there I heard a seminar given by a dermatologist. She showed pictures of melanoma and, for the first time, I saw a perfectly round, even-toned, non-itchy, nonbleeding mole that was determined to be a melanoma via biopsy. I made an appointment with a dermatologist at a teaching hospital in Tampa, Florida, who said the mole looked normal to him, but that he would do a biopsy just to be sure.

We went on a short cruise to the Bahamas. On our return, as soon as I turned my phone back on, a resident called me from the hospital to inform me that the biopsy had come back positive for melanoma, and I was set up to have surgery the next day. The dermatologist said I had a boater’s skin cancer by location, which made sense for someone like me, who used to spend a lot of time scuba diving. The sun’s rays are magnified by the water and reflect back onto the neck.

This finding was made six years ago. Since then, I’ve had basal and squamous cancer and get screened every six months or sooner if I worry about something. I also use a good sun blocker.

The lesson I learned was that enlargement can be a symptom of melanoma. When in doubt, see a dermatologist. Better an unnecessary biopsy than a missed necessary one.

- Norma GoldbergerApollo Beach, Florida

DON’T FORGET TO GRIEVE

To my fellow pink warriors, I was reminded in October of something we don’t often touch on enough during Breast Cancer Awareness Month: grief! It is a natural feeling that is best dealt with when felt. October can remind us of loss to body, life roles, people we love and people we were, and isolated moments of anxiety can lead to anticipated grief over events we haven’t experienced or may not experience. It is okay to cry. In fact, we can’t begin to heal emotionally until we cry.

As a society, we have possibly become programmed to think that, if we hurt, we need to pop a pill. Not often the case or helpful in the long run. In general, and especially in recovery, you need to learn to feel again. A pill, drink or drug aren’t the cure. Cry if you need to. Grieve, and then eventually come back to the moment by being present. Live! Learn how to breathe, meditate and move to stay active.

Grief is only a concern if it turns into a clinical depression which impacts energy levels, motivation to live, appetite, sleep and general interest in daily living. If that is the case, seek counseling for an evaluation, but otherwise, I encourage us as the survivors we are to nurture our minds and bodies. Create a happy playlist, give yourself a warm and healing hug (a real hug with no holding back) and be selfish by doing something special with your very own “me” time.

- Tamera Anderson-Hanna,L.M.H.C., C.A.P., C.R.C., R.Y.T.Miami, Florida