By Jennifer Martin
Ever since my husband Steve's melanoma diagnosis two years ago, I have poured my everything into building melanoma awareness. From research to fundraising to sharing our story, we've done it all.
But after all this time, I began to feel worn out. So, in September, when Steve's last scans for his melanoma treatment revealed that he showed no evidence of the disease (NED), we decided our family should celebrate by forgetting about melanoma. Well, at least trying to forget about melanoma.
Taking a step back from melanoma
I stepped back, but not completely away, from melanoma. I'm not sure when I last posted on Facebook about tanning legislation. I can't tell you about the latest research.
Instead, we lived life. We had a new house built. We spent more time with family and friends. Steve and I took several weekend getaways to reconnect as husband and wife. That connection is so important, and it's so easy when dealing with a cancer diagnoses for the relationship to turn into patient and caregiver.
I still read about our melahomies, our friends going through melanoma treatment. But for the most part, I was absent from it all. I felt a little guilty, but I just wanted to forget it all.
Melanoma follow-up appointments: Returning to reality
But now, we're back again. The months passed, and it was time for Steve's three-month check-up. The three-month check-up sounds so routine, so uneventful, so simple. But for Steve and our family, it was anything but.
Results tagged “Caregivers”
By Jennifer Martin
Caring for a cancer patient can be very rewarding, but it can be stressful, too. During the past year, some of our experts and caregivers have shared great advice for caregivers.
Check out these blog posts for our most helpful advice for cancer caregivers.
5 health tips for cancer caregivers
When caring for a loved one, it's easy for your own health to take a backseat. But it's essential that you stay healthy so you can provide the best care. Read these tips.
By Liz Hill
When my mom was diagnosed with metastatic melanoma, I became her main caregiver. For two years, I cared for her through several surgeries and several rounds of chemotherapy. I drove her from our home in Louisiana to MD Anderson, and stayed there with her for weeks at a time.
After my mom died, I felt lost. I kept thinking I needed to be taking Mom's temperature, giving her medicine, sitting with her, holding her hand, something. Mom hadn't even been 70 years old. Watching an exceptionally physically and mentally strong woman just slip away was one of the hardest things I have had to endure.
Coping with losing my mom to melanoma
A few days after my mom's memorial service, I went back to work and tried to keep my mind focused, but it was difficult. After work, I returned home, got in the shower and cried.
But this behavior was so unlike me. I was my mother's daughter. I came from a long line of strong women. I thought I needed to just suck it up and get it together. But I couldn't. No matter how many friends I leaned on, no matter how much I prayed, no matter how much I cried, the sadness just wouldn't go away. After about six months, I just couldn't take it anymore.
Being a cancer caregiver can be very rewarding, but it isn't easy. As a caregiver, you may experience stress, worry, fear and anger -- among other feelings -- throughout the cancer treatment and beyond. After all, you're busy caring for your loved ones, helping them schedule appointments and making tough decisions. That's why we call caregivers survivors.
We asked a few caregivers to share what they wish they'd have known before their cancer journeys. Here's what they had to say.You can find light within the dark
"I didn't know, but learned, that the cancer journey will be what you make of it. There's always light within the dark, if you're willing to see it.
Through our darkest times, my fiancé and I learned to communicate more effectively, find joy in the smallest things, and appreciate the daily gift of life. Those happy habits have carried over into our married life and strengthened our bond in wonderful ways: we're more selfless, we take time to express our appreciation, we're much more patient, and we forgive each other quickly. The cancer journey has given us that gift."
By Heather Valladarez, social work counselor
"How do I work, take care of my kids, be a good spouse, and find care for my loved one during the day?"
"I am taking care of my dad throughout the day, but I don't have any time for myself. This is becoming stressful."
These are just some of the situations that bring stress to caregivers for cancer patients.
While the caregiving experience can be extremely rewarding, it can also be very challenging. This so-called caregiver fatigue can be difficult both physically and emotionally.
As a cancer caregiver, you may experience any or all of the following emotional or physical stressors:
- feeling overwhelmed
- a lack of energy or feeling tired for long periods of time
- sleeping too much or too little
- weight gain, weight loss or other physical symptoms
- losing interest in activities you once enjoyed
Faith Leonard wasn't sad when her son, Shane, left for college. While many of her friends in the same situation shared a tearful goodbye with their children, Faith was happy.Just a year earlier, Shane had undergone seven weeks of proton therapy treatment for adenoid cystic carcinoma. Faith and her husband Bill didn't know if Shane would live, let alone attend college.
But with his cancer in remission, Shane was ready to begin his freshman year, and his parents were grateful this day had come.
"We're so thankful that he's well, and that trumps everything else," Faith says. "Because we had such a big problem in front of us, now everything seems easy."
Adenoid cystic carcinoma treatment: caring for her son
It wasn't until she returned home that Faith realized the hole left by Shane's departure.
At a time when most of his peers were exploring their independence and becoming less reliant on their parents, cancer had left Shane with no choice but to become more reliant on his mom and dad. His survival had depended on it.
By Brittany Cordeiro
When caring for a loved one, your health and wellness may often take a backseat. All your time and energy is devoted to nurturing your friend or family member. You grab fast food at the hospital or skip meals entirely to stay by his or her side.
But as a caregiver, it's essential you stay healthy so you can better care for your loved one. In addition, you'll be in better shape to fight off diseases like cancer.
"Research shows that making small changes can lead to bigger diet changes over time and better health," says Mary Ellen Herndon, a wellness dietician at MD Anderson.
Try these tips to maintain good health with a balanced diet.
By Tom Barber
I am one of four members of my family that have had lung cancer.
I was a primary caregiver to my oldest sister, who died many years before I received my lung cancer diagnosis.
Unfortunately, my second of two sisters to die of lung cancer said goodbye on June 13, 2013. Goodbye, sis. Love you. I am tired of this stuff.
Secrets of a cancer patient caring for a cancer patient
I have two really vivid and distinct cancer memories. Together, they helped me confront my second sister's lung cancer.
On how to be a cancer caregiver, I recall my father asking me how I wanted my mother to remember me just before I stepped into her ICU room to say goodbye. It was gently instructive and made me gather my courage and put a loving and peaceful look on my face as I approached my dear mother for the last time.
It has given me peace many times that she saw me filled with love for her and positive in my countenance to the end.
By Mike Snyder
Early in my cancer journey, my wife Sarah made an interesting observation. "You know what it's like to be a cancer patient," she said. "But you don't know what it's like to have a family member who's a cancer patient."
She was absolutely right. I had an idea of what my family was feeling, but I didn't really know how they felt. I wasn't the one who had a family member with cancer.
I knew how to be a cancer patient, but not how to be a supporter or caregiver for someone with cancer.
From that point on, and especially after coming to MD Anderson, I've spent a lot of time thinking about cancer's impact on the people who love them.
As patients, we have resources to help us deal with the physical and emotional toll of cancer. But what about our family members, friends and caregivers? What's available to make their journey easier?
My husband, Francis, has stage IV colon cancer. Since his diagnosis, many people have asked how they can help.
Last week I shared advice on what to say and how to support a cancer patient and his or her family.
By LeAnne Gibbs
It seems that something about cancer affects our filters/manners/politeness, and in an effort to say the right thing, we say exactly the most awkward, wrong thing. I, myself, have been guilty of not knowing what to say or saying the wrong things.
I've perused the web for intelligent advice on what to say or not to say to someone with a terminal cancer diagnosis.
My husband, Francis, has terminal stage IV colon cancer, so I have some experience under my belt as well.
Here's what we've found most distressing or helpful.
Cancer runs in my family
There's an abundance of cancer in my family; almost all my relatives have had at least one form of cancer. Even my mother is a 19-year breast cancer survivor, as well as a bladder cancer and basal cell survivor.
I thought her bout with cancer was over, but I should've known better. You always have to be on guard against the ugly beast, cancer.
This year, some inspiring and selfless caregivers have shared their stories here on Cancerwise. They've taught us about love and perseverance, and showed us how they make a difference.
By Carol Dimmett, chaplain, Department of Chaplaincy and Pastoral Education
Anyone who has been a caregiver for any amount of time probably knows what the term PTSD means.
For those who don't, it stands for post-traumatic stress disorder and it can happen to people who are caregivers for an extended period of time.
They may hear the slogan, "Don't just stand there, do something," over and over in their heads.
That's partly because being a caregiver, there's always something to be done.
In honor of Caregiver Week, I suggest another slogan for you. (OK, it isn't a slogan; I saw it on a bumper sticker.)
"Don't just do something, stand there."
Take time for yourself
I like that one so much. How many people take time for themselves?
How many times have people said to you, 'How is _____ doing?' Has anyone asked how you are doing? When was the last time you heard, 'I'm coming over to sit with _____ so you can go out to dinner?"
By Genie Alice Causey
Nate Causey of Tupelo, Miss., was treated for TMJ and tension headaches before doctors found the real cause. At age 34, he was diagnosed with a central neurocytoma on May 7, 2010. Unexpected and rare complications left him with several disabilities, but with hard work and determination, Nate is beating the odds every day.
His wife, Genie Alice, wants to share her experiences as a caregiver to encourage others no matter where they are in the process of fighting cancer.
This post is part of our Caregiver Week series, November 12-16.
Caregivers --despite our differences --it seems there's one thing we all have in common: guilt.
Well-meaning friends, doctors and strangers always tell us the same things, "Take care of yourself."
It sounds like a great idea, right? But it's not always practical or realistic.
We feel guilty. Everyone tells us that doing these things will make us better caregivers. But whenever we take time for ourselves, we feel guilty that we aren't doing something else.
Early on in my caregiving journey lots of people told me how important it was for me to take a night off and go spend time with my friends. The problem was, when I actually did that I was so consumed with guilt and worry that it made my stress levels worse.
As a fellow caregiver, I want to share some simple, real ways that helped me learn what it means to "take care of myself." I'm no expert, but I've been there, and this is what has worked for me.
By Johanna Pule, Department of Social Work
This post is a continuation of the Young Adult Caregiving series. Part one detailed the role of a parent caregiver. This one focuses on issues specific to caregiving as the spouse or partner of a young adult patient.
In sickness and in health: Being the partner of a cancer patient living with cancer
Marriage, in fact, relationships in general, can be hard work. Throwing a diagnosis of cancer into the mix creates new obstacles and challenges for a young adult couple.
As the spouse or partner of a patient living with cancer, you may be the primary caregiver for your loved one throughout the course of treatment and may find yourself facing some of the following issues.
Fertility and intimacy
Many treatment side effects can lead to infertility in both male and female patients. As young adults, you may have been making plans to start a family. Often, the logistics of exploring the fertility options that are available, feasible and affordable can be daunting. Fertile Hope offers a fantastic collection of resources for assisting patients and their partners in this search.
Caring for the whole patient, sex life and all, is part of the standard, holistic approach to cancer care. Most health care providers are open to not only exploring fertility options, but are available to discuss intimacy issues with patients and their partners.
By Johanna Pule, Department of Social Work
The National Association of Caregivers describes the typical caregiver as a 49-year-old female caring for her widowed 69-year-old mother, who lives outside of the home.
For those of you caring for a young adult patient (any patient ages 15-40), you do not look like the "typical" caregiver described. The patient is not a widowed 69-year-old mother, but rather could be a 19-year-old leaving home for the first time, a 30-year-old with two small children or a 24-year-old just starting his career. And you could very well be the patient's mother, spouse, partner, cousin, aunt or grandparent.
Adolescent and young adult (AYA) patients have their own unique set of challenges and the same can be said for you as the caregiver. This post begins a series that will focus on the caregiving role of the parents of young adult patients and the caregiving role of the partners/spouses of young adult patients.
Changing roles: Being the parent of a cancer patient
When your son or daughter receives a cancer diagnosis, your role as the parent can change. You shift from encouraging independence to, at times, taking care of her or her every need as you did when they were younger.
Respect and communication. One of the most important things for parents to remember while caring for their AYA patient is to keep lines of communication open. Allow patients the freedom to talk about their feelings when they are ready.
By April Thomas
April began working at MD Anderson as a new graduate nurse in May 2004 in the Department of Thoracic and Cardiovascular Surgery. She remained there for seven years, worked six months in the Post Anesthesia Care Unit and now is in the Gastrointestinal/Colorectal Clinic.
Where do I begin?
I think I will start with here and now, and then work my way backward.
Today is my grandmother, Nanny's, second day in the hospital. She was admitted with pneumonia and chronic obstructive pulmonary disease exacerbation.
This year has been such a roller coaster ride. When she was diagnosed with lung cancer eight months ago, I had no clue what this meant for our little family.
Nanny was too sick for chemo, and because of the size of the cancer and her missing left lower lobe from her previous lung cancer, surgery was not an option.
Proton therapy was the recommendation and she had 37 treatments. She was treated once per day, five days a week, for seven weeks and two days.
Nanny battled lung cancer in her left lower lobe 22 years ago and won. She remained cancer free until a new primary cancer decided to take over her right middle and upper lobes.
During the work-up phase, the bronchoscopy (a test to view the airways and diagnose lung disease) was postponed twice. Once for an elevated heart rate, a second time for a severe nose bleed that was seen as a risk for compromising her airway during the procedure. Third time's a charm, right?
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