Grief, Loss, and the Cancer Experience

“In a society which is much more inclined to help you hide your pain rather than to grow through it, is necessary to make a very conscious effort to mourn.” -Henri Nouwen

Grief is a natural response to loss. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. When we step back and look at the cancer experience we see that grief and loss are a fundamental part it.  Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies.

Coping with the losses associated with cancer is challenging.  Grief brings many emotions with it. Patients as well as caregivers and family members may go through emotions of anger, denial, and sadness.  While there is no right or wrong way to grieve, there are healthy ways to cope with the pain and sadness that, in time, can help you come to terms with your loss, find new meaning, and move on with your life. 

10 Ways to Cope With Cancer Grief

1. Acknowledge Your Feelings

Attempts at avoiding or ignoring difficult feelings hinder the healing process. Nancy Stordahl, who writes about living with breast cancer on her blog, Nancy’s Point, says we need to “grieve for things we’ve lost to cancer. We aren’t the same people in some ways post diagnosis. We have lost parts of ourselves (figuratively and literally). We need to grieve for people, things and pieces of ourselves we have lost. Too many times we aren’t given the time or ‘permission’ to do so.” By facing our losses and feeling the pain we allow grief to take its natural course and can emerge the other side with greater self-awareness and acceptance.

2. Tune Into What You Are Feeling

It is helpful to get into the habit of checking in with your feelings.  Take a moment to stop and be still. Breathe deeply. Now ask yourself what you are truly feeling. Grief? Guilt? Sadness? Anger? Whatever arises, see if you can just be with the feeling and feel it fully without judging your thoughts or emotions. Is there a physical discomfort associated with this feeling? For example, when you’re anxious or afraid, you may notice a tightness in your chest. Can you soften and relax those areas of tension in your body?  You may find the intensity of your feeling lessens as you do this exercise. If the emotion deepens or adds to your distress, discontinue the exercise and try again later.

3. Write Down Your Feelings

If you feel stuck when sitting with your emotions, try journaling about the experience. For some people, it’s easier to write thoughts and feelings down on paper than to say them out loud.   Keeping a journal to write down your thoughts is a way to come to terms with your feelings of grief. Many cancer patients choose to write about their feelings in a blog. Blogging in a community of other patients who understand what you are going through can be very therapeutic (to learn more about starting a blog read this earlier post).

4. Take Care of Your Physical Health

Grief is as much a physical as an emotional process – (we often refer to grieving as ‘grief work’) – so it’s important that we get a good night’s sleep, take some exercise and eat healthy meals to regain our physical strength and heal fully.

5. Pay Attention to Grief Triggers

Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken sad memories and feelings. Plan ahead for those times.

6. Go At Your Own Pace

There is no time-table for grief, yet so often we push ourselves to ‘get over’ our grief as quickly as possible. Adapting to and coping with cancer is a process, which neither you nor any well-meaning friends or family should rush you through.  Grieving is not something that occurs once and then you are ok.  Psychiatrist Elisabeth Kübler-Ross introduced what became known as the ‘five stages of grief’ as a way of looking at grieving process, but quite often these stages don’t follow a sequential order. In reality grief can be much more disordered. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. Whatever your experience, it’s important to be patient with yourself and allow the process to unfold naturally.

7. Learn To Adjust To Your New Normal

Often we want to rush through our grief (or others want us to rush through it) so we can get back to ‘normal’ again.  The thinking behind this is when we ‘get back to normal’ we are healed. But we may find that it is no longer possible to go back to who we once were.

Your ‘new normal’ may include adapting to changes in energy and activity levels, adjusting to changed relationships at work and in your personal relationships, coming to terms with an altered body, and managing pain and treatment side effects. Be compassionate and gentle with yourself as you move through this process. Don’t judge yourself or try to hurry the experience along.

8. Take Stock

Many people see this as a time to create a new way of being in the world. Psychotherapist Karin Sieger sees in this time “opportunities of reflection, contemplation, looking at life and ourselves. And sometimes new realizations and decisions can come from that”. Ask yourself what is most important to you now? How do you want to live each day?  Hidden within grief is a healing potential that eventually can strengthen and enrich life. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.

9. Don’t Go It Alone

Grief can feel very lonely, even when you have loved ones around. Turning to others who have experienced similar losses can help. Look to cancer support groups in your area or search online to connect with those who truly understand what you are going through.  Talking to a psycho-oncologist or counsellor can also help.

10. Recognize There Is No Right Way To Grieve

Grief is a highly individual experience. How you grieve depends on many factors, including your personality and coping style.  Commenting in her last book before her death in 2004, Kübler-Ross said about the five stages of grief: “They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.” Don’t let anyone tell you how to feel.  Your grief is your own, and no one else can tell you when it’s time to ‘move on’ or ‘get over it’.

When Grief Doesn’t Go Away

We all cope with grief in our own way and most of us reach resolution and acceptance in time. It’s normal to feel sadness, depression and grief following a loss, but as time passes, these emotions should become less intense.  If you aren’t feeling better over time, or your grief is getting worse, it may be a sign that your grief has developed into a more serious problem, such as complicated grief or major depression.   If your grief is overwhelming or lasting for a prolonged time, seek out a mental health professional with experience in grief counselling. They can help you work through your feelings and overcome obstacles to your grieving.

Grief can be a roller coaster full of ups and downs, highs and lows.  It takes courage and time to work through your feelings of loss. Grief counsellor Taruni Tan has written that “everyone’s healing process is unique and while there may be universally recommended tools and techniques to try, we each have to discover our own individual formula.” The good news is that most of us who grieve recover with time.   We may be radically changed by the experience, but we find a way to continue to face the future.

What’s a Patient Scientist?

I recently attended a conference called “Patients As Partners” which focused on the benefits of Pharma companies using patients early during the development of clinical trials.  One company (I don’t remember which one) said that they had begun referring to patients in this role as “patient scientists”. I hadn’t heard this term before but it struck me as profound to the point where I even tweeted about it…and I don’t tweet on a regular basis.

Why did I find this term so encompassing?  First a bit of background.  I was diagnosed with a blood cancer called Multiple Myeloma and given 2-3 years to live.  That was 23 years ago but with lots of treatment…chemotherapy, 3 transplants (including one allogeneic transplant using donor stem cells), several rounds of radiation and 2 clinical trials.  During the last 15 years I’ve become quite active in myeloma: facilitating our local San Francisco Bay Area myeloma support group, volunteering with several myeloma advocacy organizations, and attending medical conferences like the annual American Society of Hematology and International Myeloma Working Group conferences.  And most recently, I’m helping provide a patient perspective during the design and approval of myeloma clinical trials for SWOG (a National Clinical Trial Network group) and the National Cancer Institute.

At these conferences and clinical trial meetings, almost all the attendees are MD’s and PhD’s and it can honestly be quite intimidating to ask questions and make suggestions. But then I heard the phrase “patient scientist”. In fact, none of those doctors in the room have the expertise that I do being a myeloma patient. None of them have been treated with chemotherapy, had a transplant, or been the “recipient” of a dozen bone marrow biopsy/aspirates. I really am an expert, or “scientist”, in being a patient, having experienced the physical and mental demands that go along with trying to survive with good quality of life.  And by sharing experiences with other patients, I’m able to offer a valuable perspective when designing future trials.  As a “patient scientist”, I take very seriously my role and the responsibilities that go along with it. And I’m always appreciative that those MD’s and PhD’s consider my input as they do each others.

Lazarex

Lazarex Cancer Foundation improves the outcome of cancer care, giving hope, dignity and life to advanced stage cancer patients and the medically underserved by providing assistance with costs for FDA clinical trial participation, identification of clinical trial options, community outreach and engagement. They provide resources for cancer patients who have been told they have no other options, but who are not yet done with their journey in life and refuse to give up.

  • Help patients of all ages and walks of life, with all forms of cancer.
  • Help patients take advantage of medical breakthroughs today, because they may not have a tomorrow.
  • Believe that the size of a patient’s bank account should not stand between them and the choices they make or the treatments they need.
  • Present clinical trials as an alternative to hospice care for those who want to remain engaged in their fight against cancer.
  • Aspire to improve cancer survival rates through screenings and early detection, with a focus on the medically underserved to address health disparities.