This thing called cancer. It’s really a very tricky thing and different for every person.
Every individual’s experience must be honored for the uniqueness that it is AND no one can be compared to anyone else.

Yes, there is degree, stage, extent and other discriminating distinctions. But, nothing trumps the actual, individual experience of it.

And, let’s not forget that there is the distinction of WHO is experiencing it: the cancer patient him/herself, the family members and/or caregivers, their colleagues and friends, the medical team treating it,

Furthermore, there is the HOW it is being treated. Is it just surgical or does it involve chemotherapy of some sort (including or not including a port), the radiation, the duration of both? There is also ongoing treatment. And, let’s not forget … the aftermath.

Cancer does not end when the culprit is removed or after it is attacked with powerful drugs or radiation. In fact, I contend, that it lasts forever. However, for many the actual aftermath seems to run two years or so.

I remember the first time I showed up for my cancer support group. I was just out of radiation. This was an independent group of women, all having had breast cancer. I asked them when they started feeling more “normal” and they said … 2 years. I started to cry.
Now that “treatment” was over, I wanted to go back to who I was. They were loving but honest when they said, “Ann, recovery takes a long time. Be patient.”

So let me tell you why I’m really writing this article.

My experience of my own cancer was the FINAL piece of the puzzle in a long life of other cancer experiences. I now had a 360 degree view… I could now see through the lens as a patient, along with all the other viewpoints I’ll describe to you.

At age 30, my youngest brother (then age 26) was diagnosed with malignant melanoma. Long story short, he died within 9 months. Altho he lived far away, I was there by phone, at least one visit and most importantly, I was there for my Mother who was his primary caregiver. Supporting a Mother who is in the process of losing a child is not an easy task.
Here’s the caveat … I was a new Mother. My brother was diagnosed during my pregnancy and my son was 7 months old when he lost his uncle. (Although not by cancer, my second brother, a bit older, died in an automobile crash 2 weeks after my brother who died from cancer.) Many years later, I lost my oldest brother and watched his cancer progress and spread over many years.
So, I definitely have the Caregiver/ Caretaker view… the view of someone who has LOST someone to cancer.

My degree is an MSW. I was a clinical social worker – a psychotherapist. Certainly after my brother’s death, I became almost consumed by the need to help people accept their impending death or the death of a loved one. Much of my therapy practice and even courses and workshops I taught were around Death and Dying and caretaking. I have the view of a therapist working directly with patients.

With that background, I was asked to head up a community volunteer Hospice. I agreed. I selected and screened applicants, I taught the volunteers and I ran the Hospice (on the side.) I have the view of an administrator/ health care provider.

On the day I was diagnosed with my own breast cancer, I remember thinking … “well this will certainly be another view.” It wasn’t one that I wanted. But yes, now I have the view of being a patient.

I share all this to point out that I have this multi-view of cancer and have some opinions and some tips.

First, a few notions:
1. Everyone’s experience is different
2. No one expects it … not even those who smoke or engage in any behaviors that are statistically known to cause cancer or who have a genetic pre-disposition.
3. No one knows how to handle it.
4. Caregivers, even if they’ve done it before, are in for a totally different experience each time because everyone’s experience is different.
5. Cancer is unpredictable, so no one can ever be able to predict anything about it with certainty… pro or con.
6. People who experience cancer have different resources … not just money, but family or not, jobs that easily adapt to treatment or not, workplaces that understand or not, friends and support or not, the proximity of treatment resources or not.

And although there are many other distinctions, the last I would like to list is this one and I don’t mean to be offensive:

7. Doctors and nurses have LITTLE to NO clue about the actual experience of their patients because they have to lump us all together. They are constrained by time (insurance companies allot so much time for a visit), they are constrained by the resources and insurance funds that are available to each different patient, AND they are often detached from their own feelings in dealing with the patients. I don’t mean this in an accusatory way, but rather as a statement of truth. When you work in oncology you see a lot of people die … you have to manage your feelings to be able to continue doing it. And, because they spend such little time with us, there is no time for a true conversation of your ( the patient’s ) feelings or your experience. Not their fault.

So my purpose is to begin sharing the truth of my experience from a 360 degree lens of what the true cancer experience is like. Now, of course, this is through my filter of my experience along with discussions with others. However, I feel I can illuminate what I call the Cancer Adventure and deliver it in bite-sized pieces for people to better grasp.

One final statement before I share a few key parts of the journey and this is KEY to my purpose:

Let’s take on ReInventing/ changing the conversation of SURVIVING cancer to THRIVING AFTER cancer. Surviving is a great alternative, but THRIVING is a hopeful notion.

Key Learnings through my adventure with Cancer:

1. Be honest … tell others how you feel, acknowledge that there is an alien living in your body
2. Ask for help and be willing to accept it.
3. Approach the whole experience from a place of curiosity … afterall, you are adventuring into something new… an uncharted area.
4. Remember that cancer is like a blip on the screen or a standstill on the highway. It’s Annoying. Sometimes it lasts a long time, and others a short time, but annoying either way.
5. Enjoy all the little things: taste, smell, playfulness, affection, beauty;
And the big things: love, relationship, the “present moment”

Author's Bio: 

Ann Fry, MSW, is a professional speaker and a catalyst for change and reinvention. She brings her concern for cancer into the work she does in corporations as well. She resides in NYC.