Category Archives: Caregiver Articles

Psychosocial Support in Cancer Care

Psychosocial Support in Cancer Care
By Heidi Bright, www.thriversoup.com

Psychosocial support in cancer care was addressed briefly Oct. 8 at the National Leiomyosarcoma Foundation patient symposium in St. Louis, Mo. This was one of several cancer treatment topics that I have been reporting about.
Dr. Yasmin Asvat, clinical psychologist at the Siteman Cancer Center, said, “What is a healthy emotional response to a diagnosis? All emotional responses are valid and appropriate. They’re human responses.”
Initial emotions can include sadness, anger, shock, disbelief, denial, and for a few, acceptance.
“Our bodies are looking for balance to be restored,” she said. “If we are not getting to adjustment and acceptance, how can we live well through this journey?”
Thirty percent of patients experience chronic distress after a diagnosis. “To what degree is the distress interfering with the ability to cope effectively?”
Normal feelings like sadness, fear, and vulnerability can become disabling feelings like depression and anxiety.
“Distress can be experienced throughout the cancer care trajectory,” she said.
Dr. Asvat sees her role as partner in balancing patients’ goals with fears. She tries to provide physical interventions and strategies for fatigue, pain, insomnia, and developing a healthy lifestyle.

Couples After Cancer: Growth for Some, Loss for Others

Couples After Cancer: Growth for Some, Loss for Others

Author:

@DrAnneKatz

Nov 21, 2016
"Many of the couples that I see in my practice grow closer after the diagnosis and treatment of cancer. I describe it as being forged by the searing flames of this still dreaded disease. First comes the terror of the diagnosis and the fear of losing one’s love; I see it in the eyes of the women and men as they sit with the spouse or partner who has just found out they have cancer. Then they tell me, often in a tear-soaked whisper, that they would give up anything and everything just to keep their beloved alive. I nod and often reach out with my hand to soothe, as if it were even possible in that moment. I know I will see these couples again, when the trauma of diagnosis has passed and the memory of surgery or radiation is beginning to dim. Now they can laugh together, about his fear of the knife and her anxiety that he would not come home to her.
They weather the days and weeks and months that follow, some better than others. The loss of connectedness, the true meaning of intimacy, is challenging, but with some help, they begin to talk. I sit in my chair and see tears fill the eyes of men who last cried when their babies were born. This is a strange feeling for them and they ignore the proffered box of tissues, choosing instead to wipe their eyes with the backs of their fists. The women tend to cry more easily, apologizing all the while, but tears do not shame them. I understand. Over weeks and months they craft a new togetherness, one that is circled by talk of shared emotions and new pleasures. They have grown, and in their growth I learn life lessons for myself, although this is never the intent. I learn about grace and words and gestures that bridge the gap between passion and loss, fire and rain.
But then there are those for whom the cancer portends a much greater risk. There are those (they are usually women) who first come to me on their own despite instructions to bring their partner to our meeting. I listen for the red flags behind the halting requests of these women to fix them, to make them whole, to somehow make the years after menopause go away. These women seek out the skills of the plastic surgeon to create a body that is not theirs, is better than theirs ever was.  I gently ask them why. With shoulders squared, I hear stories of past transgressions—his, not hers—of relationships hard fought for with the constant threat that he will do it again, will seek out someone new, someone younger, someone more something or other. These women have forgiven, some many times, or have pretended not to know the truth behind the late nights at work, the sudden trips to… where? They tell me without speaking that there have been silences between them, some weeks long, when they wanted to ask “Who is she?” but were afraid to hear the answer.
These couples walk a tightrope of mistrust and lies told over the years until she stops asking, stops thinking, perhaps even stops caring. There is the house, the grandchildren, the friends who know but never ask. The fear of losing it all, the money too, keeps them accepting, silent, in hurtful ignorance. These couples did not draw together as she healed physically from yet another surgery to make her breasts those of the 22-year-old he craved all those years ago. Her stomach is tight afterwards, but a scar stretches just below in painful imitation of a smile. She still dresses and undresses in the closet, afraid that if he sees he will reject her and she will have experienced all that pain for naught.
The men hardly every appear for our sessions, despite my warning that the women are not going to fix anything without them. They keep coming back alone—he had a meeting, he was going to come, he refuses to come.
My better judgment falls prey to sadness and I sit with these women, tissues offered and accepted, as I listen to the stories. Not for these women the gift of acceptance, of love given and received. For them there is the lonely song of compromise, of making do, of keeping up appearances outside my office walls. I learn lessons from them too, but mostly I wonder at their fortitude, their forbearance, and their suffering.
Cancer makes some couples closer; I wish it were so for all."

Helpful Resources for Caregivers

 

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" Our families,  our good friends all help find important things
when we have lost them . . . things like our smile, our hope,
our strength, and our courage."

Supporting one another is a huge part of this journey . . . .

Patients, their family/caregiver, along with the patient's oncologist/medical care team -  all have an important role to play in terms of working together, communicating, and helping the patient get through a difficult diagnosis, treatment journey, and maintenance phase after treatment.  The level of teamwork makes all the difference for - for everyone involved.

In turn,  the family/caregivers need support to continue to be able to sustain coping ability.  The National Cancer Institute
Society all have valuable resource information to support and assist. Some of the information is provided below, but accessing their websites will be most beneficial.
  • When a family member is afflicted with cancer, giving care and support during this time can be difficult. Often times, caregivers have to put their feelings and needs aside to care for a person dealing with cancer, which can be taxing to their health in the long term. The National Cancer Institute has an excellent booklet on how a caregiver can take care of their self  so they can take care of others. Click on the link below to download the booklet from the National Cancer Institute :

https://www.cancer.gov/publications/patient-education/when-someone-you-love-is-being-treated

  • The National Cancer Institute has many helpful resources for caregivers, who can benefit from helpful messages of encouragement, understanding, and guidance to keep them going in caring for their loved ones struggling with the cancer journey.

https://www.cancer.gov/about-cancer/coping/caregiver-support

  • The American Cancer Society is another good source to find information on what to expect in caring for someone with cancer, as well as ensuring that as a caregiver, you are taking proper care of yourself:

Caregiver’s Corner-Caregiver Support

cancer caregiver support

“My Best Advice as a Caregiver” by Annie Achee of the National Leiomyosarcoma Foundation

 

I am not the patient, but the caregiver of my husband, Dr. Mitchell (“Mitch”) D. Achee, Radiologist, and Leiomyosarcoma (LMS) survivor of 5 years.
Leiomyosarcoma (LMS) is one of 50+ subtypes of sarcoma – 13 -17% roughly of all sarcomas. Sarcoma is 1% of all cancers. LMS is a designated rare disease.
He is currently the Medical Advisory Chair for the National Leiomyosarcoma Foundation (NLMSF). He speaks to LMS patients all over the world. Throughout his career, he has exemplified noteworthy compassion and great concern for patients, continuing to this day. He has presented information about radiology studies for patient education programs to help patients and caregivers better understand diagnostic interpretation and findings and the significance of monitoring disease progression through such studies.
During Mitch’s diagnosis and treatment phase, I decided I needed to be more than just an “observer” of the processes. I needed to be involved in each phase of this cancer journey. I had to arm myself with knowledge about the disease, what treatment side effects to expect so I could be prepared to help minimize them, sidestep them if possible, and manage them in the best possible way. I read everything I could get my hands on to learn as much has I could, as fast as I could.
This all made me stronger somehow. I was so focused on doing the right things for Mitch, and trying
not to make any mistakes or miss something I could have prevented. I was empowering myself, and
I did not even think about it that way at the time. But looking back, I am glad that I approached my
caregiving role in that way.
I researched many articles in order to prepare questions for the oncologist and sent them ahead
of our appointments – about three weeks ahead, to be respectful of her time, and allow for time
to respond.
I still to this day, continue to research, learn, and reach out for help and support. I don’t want to isolate myself, but rather grab hands and move together in the direction that will be the most beneficial, one patient at a time. My research now applies to helping other patients.
I want to help them build their self-advocacy skills, to make a difference in their oncology appointments. They too must educate themselves to be able to ask the right questions of their oncologist about their treatment options, what to expect during treatment, after treatment, and how to take care of themselves through nutrition, exercise, etc. to maintain the quality of life and hopefully sidestep a cancer recurrence.
My advice to caregivers based on my experiences in the rare disease and rare cancer journey is this:
  1. Take care of yourself. You must stay healthy so you can be well enough to care for your loved one.
  2. Don’t lose your sense of humor. Watch a funny movie together – to give you both a break from stress and anxiety, even if it is for just a little while. The old adage “laughter is the best medicine” still applies!
  3. Seek an oncological massage for your loved one; have one yourself – some cancer treatment hospitals offer oncology massages for stress release.
  4. Stay connected with friends. They can be a source of support and strength.
  5. Keep notes (a journal perhaps) of your loved one’s treatments and appointments. I kept a medical appointment notebook, with pocket tabs for CT/MRI scans /reports, blood labs, my notes; information from the oncologist, a list of questions to ask. This helped to stay organized and be able to prepare for the next appointment by having previous appointment information readily available in chronological order.
  6. Finally, the National Cancer Institute has a resource information for caregivers –“Caring for the Caregivers.” Go to: http://www.cancer.gov/publicatons/patient-education/caring-for-the caregiver
It is my honor and privilege to be able to reach out and touch someone through a personal phone call, patient education programs, talking with LMS/sarcoma researchers, or work with state and federal legislators for an LMS Awareness Day– all in an effort to amplify the voice of the LMS patient community through advocacy.
Caregivers are the “first responders” to what it takes to keep “their patient” in a positive emotional and physical place to continue the treatment journey in the best possible way, for the best possible outcome. It takes courage and strength to overcome the fear of uncertainty and the unknown relative to a rare disease/rare cancer – for both patient and caregiver.
I am continuously inspired by everyone I meet in the rare disease community – from patients and caregivers, to social workers, nurses, other patient advocacy resource organizations, and the researchers on the front lines, working hard to accelerate research breakthroughs in order to advance treatment options.
Annie Achee
National Leriomyosarcoma Foundation
Caregiver for 5 years