Thursday, February 27, 2014

The Importance of Social Support for Invisible Cancer Patients

Well, I peaked your interest with the term “invisible cancer patients;” didn’t I? Well-meaning friends and family often say to me, “You don’t look sick. In fact, you look really good!” SURPRISE! I really do have cancer. People are judged by what others see in them. If you look good, people have such high expectations, as opposed to someone who is using assistive devices or who is visibly sick. Today there are many targeted cancer therapies (like Imbruvica, a.k.a. ibrutinib, a.k.a. PCI-32765) that don’t cause many of the visible signs of cancer treatment, but it is cancer treatment non-the less.

Many of us with cancer are living with an invisible disease. It could be your neighbor, an old friend from college, or the woman you ran into at the grocery store. They look like healthy normal people, but they are fighting an ongoing illness and living with fatigue, pain, cognitive impairments, dizziness, and other limitations, such as having limited ability to cope with stress.

The invisible cancer patient is left with the residuals of having cancer – both physical and psychological. Cancer support groups and one-on-one counseling can help a cancer patient get through the psychological stress of coping. In today’s blog I am addressing the importance of social support from family and friends for the invisible cancer patient like me.

Usually when someone thinks of a cancer patient, they are remembering the visible effects of chemotherapy with the hair and weight loss. A person standing next to you in the checkout line may have a brain tumor, but it is not until he is treated with chemotherapy that you notice he looks ill.

Cancer changes your life. Along with the physical changes, having a cancer diagnosis changes your relationships, your activities, your career, your role in life, and comes with psychological stress. I have always been the “EverReady Bunny” full of energy. It is difficult for me to admit that I am not the same person. It is frustrating that I cannot do all the things I used to be able to do… that I need help. I used to be the master multi-tasker. Now I have to be realistic and remember that I can schedule one or two things per day before I get really fatigued. The problem is that I don’t look sick to others, so they often forget. And I often forget.

Many of us with invisible cancer are often walking around with a dark cloud over our heads asking ourselves “When will the other shoe fall?” Others find comfort in intermittent ostrich moments of wanting to forget we have cancer at all. On good days we are joyful and then we remember… “Man, I have cancer! This IS a big deal!” Other days we just want to crawl back in bed and dream about our life B.C. (before cancer), because having cancer sucks. We get sick of it and want our old lives back again. I have always been one of those “healthy as a horse” kind of people… B.C. Some days it feels like someone stole something very important from me. Some days tears may fall.

Herein lies the frustration. Because I have always been such an independent woman my entire life, it is difficult for me to admit that life has changed. I do not want to be treated differently, but some days I have no choice. I have a new normal.

Some times it is delightful when a friend forgets I have cancer, because then I know she is treating me like a normal person. Yes, I have cancer, but it does not own me. It does not define me. So those moments are precious to me.

Scientific research has found that there is a direct correlation between a cancer patient’s wellbeing and the social support the person receives (Usta, 2012). If you are family or friends of a cancer patient, know that reaching out leads to positive emotional adjustment to cancer. It lessens the high psychological stress of having the disease.

The National Cancer Institute (NCI) states that cancer patients who are able to cope with stress have a better quality of life. Having a positive attitude does not make a cancer patient live longer, according to NCI. It makes the journey more palatable for everyone. However, I can tell you that the psychological stress (i.e. fighting the insurance company’s drug coverage and benefits, wondering if there is a treatment that will work, leaving a lucrative career before you can collect retirement benefits) takes it’s toll, even on the person who has successfully managed a demanding career. The National Cancer Institute also states that psychological stress alone has not been found to cause cancer, but continued exposure to long-term stress has a direct correlation on health and ability to cope with cancer.

So what can you do to offer social support to your friend or sister or mother who has cancer?
• Let her live as normal a life as possible. Please do not feel sorry for her or be overprotective. It really isn’t helpful.

• If she acts differently at times – maybe a little needy or sensitive, please be patient with her. It soon will pass.

• Understand that especially during medical testing she may be anxious or fearful. This is usually short-lived, so please overlook her stressful attitude and be prepared to be forgiving and understanding. Try not to react emotionally by arguing with her. It makes matters worse.

• Family and friends, you do not have to feel pressured into keeping a positive attitude at all times, because it is just plain unrealistic. When people have major life changes, it is normal to feel some sadness, fear, anxiety, depression or guilt in order to learn to cope with the diagnosis. It’s okay.

• Please do not blame yourself or blame her. Try not to feel guilty, but if you do and feel the need to explain your regrets to her, go ahead. Then just move on with her.

• Please do not always talk about the past, unless it is something that will make all of you chuckle. She needs to live in the here and now. She also needs hope that she has a future.

• Most importantly, listen to your heart. When she talks about cancer, do not change the subject. Please listen to her. Do not be silent and worry that you may say the wrong thing. Knowing that she is not alone and that you care is what is really important to her. When she doesn’t want to talk about it, offer to talk about it at another time.

I am blessed and filled with love and gratitude, but that does not always stop the blue funk from coming my direction. Remember that showing you care is good medicine. Remember, I need you more than ever. Do not wait for me to reach out to you. Sometimes the simplest thing just makes my day.




Wednesday, February 12, 2014

Fair Access to Cancer Treatment bill (or FACT Act) gets a vote in Arizona

Wednesday, Feb. 12, 2014
Reference title: Cancer treatment medications; equivalent cost-sharing

This afternoon at 2 p.m. the Arizona State Senate, 51st Legislature, Committee on Finance met for the second regular session in Room 3 to discuss the SB 1247, the Fair Access to Cancer Treatment bill (or FACT Act). The hearing was live-streamed and introduced by Senators Driggs, Tovar; Representatives Brophy McGee, Campbell, Carter, Gonzales, Gowan, Meyer, Townsend; Senator Barto; Representatives Boyer, Steele.

The current Arizona state law, enacted in 2010, allows insurance plans to charge cancer patients treated with oral cancer drugs much higher co-pay rates than those treated with other forms of chemotherapy. This has resulted in higher mortality rates than in other countries that have health systems with easier access to oral cancer treatments, according to Pat Elliott, e-patient advocate. “Cancer treatment medications” means prescription drugs and biologics that are used "to kill, slow or prevent the growth of cancerous cells.”

The vote was seven for and zero against. There were testimonies from two committee members on the difficulty for patients getting through cancer treatment. One spokesperson said that being against this bill is similar to saying that dentists should use hand drills on teeth, because electric drills have the extra utility expense.


Bill’s text: http://www.azleg.gov/legtext/51leg/2r/bills/sb1247p.pdf