Time For a Change

“Sometimes the things we can’t change end up changing us.”

In 2007 I was diagnosed with Triple Negative Breast Cancer.

In 2009 I introduced Breast Cancer Survivor Support with the intention of offering psychotherapy, resources and support to women with breast cancer.

In 2015 I want to introduce Cancer Survivor Support www.cancersurvivorsupport.com

I want to express my gratitude to those of you who have visited my breast cancer site over these past six years. As I have grown in my work providing psychotherapeutic services in the cancer community, my practice has expanded to include those who have been diagnosed with other types of cancer.  This lead me to create a new site that would include all cancers.  I have moved my blog to www.cancersurvivorsupport.com and hope that you will continue to  drop in.  My contact information remains the same.

These changes are representative of the ongoing growth and movement I experience in the years since I battled breast cancer.  Like many of you, I will have tests, scans, and follow ups for the rest of my life and an ongoing struggle with the collateral damage of an aggressive treatment.  I am still learning from my personal experience and am so deeply honored to work with those whose courage in facing this disease inspires me every day.

Thank you again … please come along with me to www.cancersurvivorsupport.com

The Aliveness of Searching

“The only journey is the journey within.” Rainer Maria Rilke

“Whether good or bad, life changing situations often give people a chance to grow, learn and appreciate what’s important to them.  Many people with cancer describe their experience as a journey. It’s not necessarily a journey they would have chosen for themselves. But it sometimes presents the opportunity to look at things in a different way.”

National Cancer Institute, Facing Forward: Life After Cancer Treatment

It may be that it is important to remember our experience so that as we move forward in our lives we have the opportunity to bring a sense of meaning and possibility with us. Life-changing experiences, while sometimes devastating and frightening, can become an integral part of our humanity, showing us a deeper part of ourselves. We may find places within us we didn’t know existed, or visit old familiar territory that needs to be explored in the service of more fully becoming who we are. Such are the openings and the possibilities of surviving not only cancer but also the treatments for it that may linger on for weeks, months, or years, and sometimes for the rest of your life.

Cancer changes us … but whatever has been altered doesn’t seem particularly clear the moment you receive that diagnosis. Authentic transformation shows itself over time when we pay attention give attention, and allow awareness to emerge. The essence of contemplative work is to be met where you are, not where you think you should be or where others think you should be.  To meet yourself at the edges of your own known world requires letting go into the unknown territories of you inner world. You have to trust your capacity for growth and “hang in.” You allow yourself to discover the untold story within you.

The process of searching for meaning, searching within yourself is more alive and authentic than most of the answers you think you already know. It’s not about the solution or the end result, it’s about the question, or more importantly, the questioning. Exploring our inner landscape, being in the here and now, discovery and reflection – this is a practice that is fluid and alive, not fixed or immobile. Life just keeps moving on regardless of our plans and agendas.  It is the embracing of this reality, this  process, that defines searching. Searching is an active, inner practice of self-discovery. It is both a solitary as well as a guided experience. It asks for a sense of presence.

When did you last spend some time being with yourself?

What did you discover?

Be Disruptive! Insist on Quality Cancer Care

“It’s just that if you’re not disruptive everything seems to be repeated endlessly – not so much the good things but the bland things – the ordinary things – the weaker things get repeated – the stronger things get suppressed and held down and hidden.” Robert Adamson

Last week I attended the International Psycho-Oncology/American Psycho-social Oncology World Conference in Washington, DC. Nearly one thousand people from around the world came together to discuss the issues of implementing quality psycho-social care for those diagnosed with cancer. While these are not new concerns, the need to pay attention to the necessity of implementing services and coordinating resources is growing as more people are diagnosed. The good news is that people are now surviving what in the past would have been considered a death sentence. This means that quality care in post-treatment is more essential than ever.

The American medical system struggles with the costs of delivering services that are meaningful to those with cancer and their communities. All too often we throw up our hands and give up pushing for change – using the excuse of finances, people being too busy, not enough providers and so on. We feel disempowered by an enormous bureaucratic system. It’s tempting to fall into resignation, feeling like the possibility of self advocacy is too elusive and that we are powerless to bring about change. Meaningful momentum can sputter and die. It’s easy to become complacent with “good enough” groups or services that are cookie cutter and designed to prove that a cancer care program has services available. By accepting the “bland things – the ordinary things” — “the weaker things get repeated –“.

As I listened to the usual problems being brought out … again and again … it all seemed familiar. I’ve heard this for years and, I admit, have sat through the same dialogues time and time again, complaining and moaning, feeling frustrated. But at this conference I began to hear the voices of those who aren’t bowing down to accept the current situation. I perked up as I was confronted by the words of others who are taking action and asking that we all do the same. “ A call to arms” for creating meaningful impact was sounded!

Here are some suggestions to help all of us take the actions needed to advocate for quality psycho-social cancer care.

Be disruptive! Voice your opinions and be willing to create a ruckus for change.

Promote self-advocacy ! Cancer patients, their partners and families, can feel intimidated by requesting what they need. Keep in mind that this is your life. Insist to be taken seriously and respected.

Take risks! Be willing to stand up and be heard.

Collaborate with others! Form groups – strength in numbers. This applies to consumers of the health care system as well as the providers. We’re all in this together and it’s time we stood by one another in strong, supportive ways.

Personal connections! Strive to make strong personal connections – it helps us all to negotiate an impersonal system and feel less alone and crazy.

“Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it is the only thing that ever has.” Margaret Mead

Health Care is a Human Right

“Of all the forms of inequality, injustice in health care is the most shocking and inhumane.”
― Martin Luther King Jr.

I am attending the International Psycho-Oncology/American Psychosocial Oncology World Conference in Washington, DC.  Nearly 1,000 people from 29 countries have gathered to discuss the vital importance of implementing quality psychosocial care for cancer patients and their communities.  From National to Global: Implementing the Standard of Psychosocial Care in Oncology.

I have listened to many stories of the need to attend to the human right to health care in this world. I heard about children in Kenya who are kept in the hospital until their families can pay the bill for the treatment they have received.  I now know that many people with terminal cancer die extremely painful deaths because they do not have palliative care medications to ease their suffering.  In some situations, caregivers will be punished for allowing families to receive the bodies of their loved ones if they have not completed payment for their treatment.  Other such atrocities occur daily and are endured silently on the planet. Many are denied not only quality physical treatment but attention to the emotional and social trauma of a cancer diagnosis.  Due to the health care system in the United States, a serious medical diagnosis is the most common reason for bankruptcy.

There are people who are saying that this is unacceptable, they are speaking up and taking action.

Cancer survivors in Australia, unsatisfied with the quality of emotional care rebelled and have formed highly successful peer support groups – they became advocates for their own care as well as the care of other cancer survivors. As consumers, they raised their voices … and the government as well as the medical establishment listened.  As a powerful patient group they brought about change in the system. They did not remain silent …

“The International Psycho-Oncology Society (IPOS) Human Rights Task Force has been working since 2008 to raise awareness and support from within IPOS and the IPOS Federation for the relevance of Psychosocial Cancer Care as a Human Rights issue. We seek to advocate for this issue internationally and nationally through existing Human Rights laws.”

I want to acknowledge those who work tirelessly to bring not only equality but also quality into the lives of those who struggle with the anguish of illness and sorrow. I ask us all to join them, to end our silence in the face of adversity and agony.

I speak not for myself but for those without voice… those who have fought for their rights… their right to live in peace, their right to be treated with dignity, their right to equality of opportunity, their right to be educated.”      Malala Yousafzai

A Little Help From My Friends

“Each friend represents a world in us, a world not born until they arrive, and it is only by this meeting that a new world is born.” Anais Nin

The American Psychosocial Oncology Society (APOS)/ International Psychosocial Oncology Society (IPOS) World Conference – From National to Global: Implementing the Standard of Psychosocial Care in Oncology” convenes in Washington, DC next week. Hundreds of people from around the world will gather to speak, discuss issues, present studies and show research all involving the psychological and social care that is needed to help those who have received a diagnosis of cancer.

I’ll be there, too.

I go on my own without an affiliation with a major hospital or cancer treatment center or even any group that provides psychological care to cancer patients, their partners, families and friends. I feel a bit like someone going off to a huge university, not knowing anyone, unsure and a bit intimidated. I’ll be presenting a poster, In Any Language: Creating a Heartfelt Narrative in Patient Centered Cancer Care. I hope they like me …

Not wanting to give a lot of power to my fear and anxiety and my concerns that “no one will ask me to dance”, I am going with the intention of meeting some new colleagues who share some of my values about patient centered care. My grander hope is that I may even make some new friends. As a single practitioner, I work alone. While I seek consultation and conversation with others, it can still be isolating. I often write about the needs of the patients and their families but today I’m coming from the perspective of the professional or caregiver. As both patient and therapist, I understand the different needs of each group.

My contacts and connections in the cancer community are deeply meaningful. I am grateful for those who honor me with their trust as they struggle with heartache, pain, helplessness, and frustration. There can also be joy and transformation in the experience of life threatening illness. In the midst of this, I can feel tired and discouraged. Sometimes when I finish for the day, I feel lonely, the grief of others touches me and I, too, am sorrowful. I need someone to talk to, too. We all do …

My intention is to arrive in Washington, DC with a heart that is open to others who work with those facing life threatening illness. I’ll arrive looking to connect with others, to “create a meeting where a whole new world is born.”  I have a feeling I just might make a friend.  I’ll let you know.

Survivorship Care … What Are We Really Talking About?

“I can’t go back to yesterday – because I was a different person then.” Lewis Carroll

I wanted to share some articles and a video from The National Coalition for Cancer Survivorship  that speak to the long term issues of cancer survivorship.

For those of us who are (hopefully) in this for the long haul there are issues, questions and concerns that don’t just go away after we finish treatment for cancer. And as time passes, new concerns or some unexpected long term side effects of past treatment may appear. All too often there can be a lack of support and resources for those who may be years beyond treatment.  Sometimes we feel shy or embarrassed to talk about our experiences because we “should be over it by now.”  There’s a lot of pressure to “be back in your life” or find your “new normal.” But we don’t ever go back in time and I suspect that the “old normal” is subjective anyway.  What’s true is that we’re forever changed …

As survivors we do best when we are educated and informed so that we can advocate for ourselves.  We need to pay attention to our follow up appointments. We need to stay aware of our health without being overwhelmed or too vigilant about every ache or pain. But it’s also important to  pay attention to self care both physically and emotionally.  And sometimes the emotional impact of what we have been through gets ignored and can be stigmatized as if something is wrong with us for having feelings.

Coming from the perspective of a psychotherapist, I believe that there is no separation of mind and body and that it is vital to bring holistic care into survivorship care plans. This would include a more narrative approach that attends to the complex psychological concerns of survivors.  Bringing attention to the whole person acknowledges and creates quality of care in long term cancer survivorship.

I hope you enjoy the following links.

http://www.canceradvocacy.org/news/navigating-cancer-survivorship-without-a-net-how-far-have-we-come-and-where-are-we-headed/

http://www.canceradvocacy.org/blog/hodgkins-lymphoma-survivor-dr-greg-aune-discusses-issues-in-long-term-survivorship-care/

http://www.canceradvocacy.org/news/12127/

I’d Like To Know What Matters to You

“Thankfulness is the beginning of gratitude. Gratitude is the completion of thankfulness. Thankfulness may consist merely of words. Gratitude is shown in acts.” –Henri Frederic Amiel

I want to thank all of you who visit and read the thoughts, ideas, and feelings that I express each week on this blog. Please know how thankful I am for your support. It means a lot to me.

Today as I was thinking about what to write, I realized that I would very much appreciate hearing from you about the topics that are important and meaningful to you in your survivorship. In essence, I’d like to have a conversation with you about your concerns and offer them a space on this site.

So, rather than just stop with a thank you, I’d like to show my gratitude by asking you what matters to you. I invite you to share your perspective by commenting here. You could also leave me a question, a talking point, an issue or theme that you would like to see highlighted on this blog.  In the vein of no stupid questions, all reflections are welcome.

I look forward to us putting our heads together!

The Reality of Uncertainty: Life After Treatment

“Since we cannot change reality, let us change the eyes which see reality.” Nikos Kazantzakis

Living with uncertainty is one of the major concerns we face as cancer survivors. I’ve seen this turn up on every survey given to cancer patients and listened to survivors talk about it in therapy sessions, group discussions and casual conversation. Sometimes it is named but often uncertainty comes disguised as anxiety or shows up in searches for some kind of guarantee that illness will not return. Our thoughts and feelings around uncertainty aren’t addressed by a power point presentation, a diet or an exercise program. Exploring the truth of uncertainty is a deeply personal process. Learning to live with uncertainty may be your greatest opportunity after drawing the short straw of cancer.

Anxiety and depression are common experiences for those of us who have endured and moved beyond a cancer diagnosis and treatment. What has not been as common is the recognition of this distress as a real and valid personal experience – not a pathological problem. These issues are of an emotional nature and there is still some stigma around this being the territory of the “unbalanced” and that those individuals who are not “prone to anxiety and depression prior to diagnosis” will most likely “move forward from their treatment without experiencing an ongoing distress, depression, anxiety and fear.”  This allows little room for us to speak of our emotional distress, fears of recurrence and the difficulties of living with uncertainty. Something is still wrong with you.  It is the “get over it” mode of healing. While there are those who wish to step away from the experience and never look backward, others may wish to embark upon a personal search of healing and recovery.

The sense of urgency that many cancer survivors feel is like a strong wave moving them forward.  Sometimes this urgency is mistaken for some kind of pathological anxiety and  the potential for insight is wasted in advice-giving moments of “symptom management” that imply a “settle down” quality.  Letting go of judgment, you befriend and explore what is within you, you allow yourself to open to a vast possibility of awareness.  You let yourself be …

Greeting uncertainty with an open mind moves us off the bench and on to the next bus. We don’t know our destination. An open mind moves, is light and flexible. It is interesting to think of getting to know ambiguity as a way to relax into this lightness. Imagine sitting on that bus, looking out the window and noticing the landscape you are passing through. It is unfamiliar and may be gray and depressing yet in continual movement you find yourself staring out on a beautiful field of sunflowers, their heads raised to take in a luminous golden sun. The bus continues…trees, buildings, people, the moon and stars all appear then fade away. You still have no clue where you so just relax into your seat, watch the scenery, and see what comes next.

Find your seat …

Sit quietly …

Breathe …

Some of this text is from my upcoming book, Surviving the Storm: Helping Cancer Survivors Tell Their Stories

The Healing Power of Telling Your Story

“It’s important that we share our experiences with other people. Your story will heal you and your story will heal somebody else.  When you tell your story,  you free yourself and give other people permission to acknowledge their own story. “ Iyanla Vanzant

Someone recently told her story in response to a piece I posted on my blog.  After writing about a very emotional and important event in her life, she became concerned that she had “said too much and might frighten others” when they read about her experience.  I reassured her that the courage she showed in expressing herself is more likely to help others open themselves up than to frighten them away.

The power of narrative opens a door into us. When we tell our story, when someone listens, we feel less alone, we touch one another in a place of understanding.  Historically and cross culturally, telling personal stories is an essential way that we communicate, understand our experiences and integrate them into our lives.

And so, I thought I would offer my own story …

In the spring of 2007 I discovered a lump in my breast. By the fall of 2007 I had undergone several surgeries, a grueling course of chemotherapy, and radiation treatment. Even now those months feel unreal; I still wonder if somehow they had the wrong chart. I went from feeling fine to being in pain, horribly nauseated from chemo drugs, and burned by radiation. I watched my long curls fall into the tub drain. My mouth filled with sores. My eyes turned red. Too bad it wasn’t Halloween, because I was the perfect zombie! Scans, tests, blood draws, and MRIs became familiar, yet the feelings each one produced can still evoke anxiety now, years after the initial diagnosis.

The scars on my breast and under my armpits are not visible to others. I have only one visible scar—on my chest, in the spot where my port catheter was placed to deliver the chemotherapy that saved my life. After first finishing treatment for breast cancer, I covered this scar, still vulnerable and traumatized. But I no longer worry about it showing. What remains visible is the scar from the treatment of cancer, not the cancer itself.

I was not prepared for this reality. No one told me what would happen to me after treatment. It’s likely that other survivors feel this way, too. Elizabeth Ward, national vice president of intramural research at the American Cancer Society, reports this: “We are focusing on the number of people who are now alive who have experienced cancer at some time in the past, and their transition from treatment to recovery and the balance of their life. But cancer survivors do have potential problems, including issues with quality of life and the need for both physical and psychological follow-up care. Cancer survival can affect one’s life long-term. Cancer survivors shouldn’t feel abandoned after treatment has stopped.”

I hope that you will feel free to tell your story … your experience matters.

Some of the above text is taken from my upcoming book, Surviving the Storm: Helping Cancer Survivors Tell Their Stories

What Do I Say to My Kids?

“Three things cannot be long hidden: the sun, the moon, and the truth.” Buddha

Lately I’ve been talking to parents who’ve been diagnosed with cancer and are looking at how to talk with their children.  The ages of these kids range from 3 years to 22 years.  As each one of us is unique, each of these families is one of a kind.  Yet, they all struggle with how to talk to their children about their cancer.

What do I say?

How much should I let them know?

When do I talk with them?

These are all common questions parents face as they contemplate a conversation with their kids.  It’s important to recognize that there is a huge difference between how you talk to a 3 year old as opposed to how you communicate with a  16 year old.  It’s also helpful to remember to think about who your child is as a person – sensitive and shy or  boisterous and active.  What sorts of activities does she relate to?  Does he communicate better with drawings or music than with words?  The individual capacities of your children, their developmental stages and their distinct personalities are the best information you can give yourself about how to talk with them.  Our most important job as a parent is to know who our children are.

No matter what the situation, it always seems to me that “less is more” when we talk to our kids.  At best you got a couple of minutes before their eyes glaze over!  Keep it simple and genuine.

  • Ask your kids how they are, what they feel, what they’re thinking.  Listen.
  • Prepare your talk – several sentences that are to the point and not loaded with too much information to take in at one time.
  • Reassure your kids that they can always talk with you when they are ready.
  • Be honest at whatever level is appropriate for your kids.
  • Let your kids know that they don’t need to take care of you.
  • Reassure them that they haven’t done anything wrong – that no one is guilty.

I’ve provided some links on how to talk with your kids about cancer that I hope will be of help to you as you open up these valuable conversations.

Tell the children the truth. Bob Marley

http://www.cancer.net/coping-and-emotions/communicating-loved-ones/talking-about-cancer/talking-your-children

http://www.cancer.org/treatment/childrenandcancer/helpingchildrenwhenafamilymemberhascancer/dealingwithdiagnosis/dealing-with-diagnosis-toc

http://www.cancercare.org/publications/22-helping_children_when_a_family_member_has_cancer#!explaining-the-diagnosis