Tuesday, December 10, 2013

How Could She Die of Cancer Without Anyone Knowing?

I lost someone precious. She was more than a relative. She was more than a friend. She was close to my heart. We shared laughter and tears as our lives traversed the years, she on that side of the Atlantic, and me on this side. And she died without anyone knowing she had cancer.

You would have loved her if you had the pleasure of meeting her. She had a great sense of humor and a wonderful laugh. She was a compassionate person and had a long career as a nurse. I can still remember when I showed up on her doorstep all those years ago -- a young college graduate, with tennis racquet and duffle bag in hand. She greeted me with open arms at her front door, introducing me to joys of afternoon tea. Tea bag? Never. Coffee bag? Of course.

I went off to the local tennis courts to practice my serve or wandered around her village when she went to work. She wore her uniform to the hospital, looking very smart, right down to her starched cap and nurse shoes. She loved her job.

She had the quintessential cottage garden, a charming spot on a hot summer's day. For her, gardening was a labor of love. Double petunias and begonias, she recently told me, were what should go in flower boxes. I couldn't find double petunias for my garden, but I did think of her every time I looked at my abundant Wave petunias. I managed to plant some white begonias. They, too, thrived this summer, keeping alive our connection.

She was there to help me stay the course when my mother was in the final throws of cancer. She sent me little packages she knew would appeal to the caregiver in me. Those tiny gestures of comfort were like hugs across the ocean: a daffodil pin from the Marie Curie Cancer Center, a star pin from the Light Up a Life hospice organization, cheery offerings to let me know I was not alone. My favorite gift of all was a tiny package wrapped in turquoise paper and a red ribbon. It came with this beautiful sentiment:

"This is a very special gift
That you can never see
The reason it's so special is
It's just for you from me.

Whenever you are lonely
Or even feeling blue
You only have to hold this gift
And know I think of you

You never can unwrap it
Please leave the ribbon tied
Just hold this closely to your heart
It's filled with Love inside"

Even as I recovered my bearings and moved from caregiver back to career, she was there for me every step of the way, encouraging me to keep at it. That defined her as a person. She was a lovely human being.

For the last year and a half or so, she had been sharing her health woes with me, telling me that she was fatigued, she just didn't feel right. Her pain was getting worse in the last six months. It was clear from her notes that she was dismayed. She went back and forth for doctor appointments. Was it her heart? Was it something else? No one seemed to know. Maybe it was just old age. Except her symptoms never seemed to fit that diagnosis either. The pain just got worse and worse, and as it did, so did her misery. She did not deserve it, not after all the years she spent caring for others.

Sadly, it was only after she died that her cancer was diagnosed. All those months -- nay, the last few years, were spent in needless suffering, even as the cancer invaded her body and spread, moving from organ to organ. No wonder she felt so terrible.

Whenever doctors wave away a patient's complaints, whenever we caregivers accept the status quo for our loved ones, we truly miss the boat. Palliative care is about helping loved ones live as well and as comfortably as possible, but doctors need to know what they are treating. She should have never fallen through the National Health Service cracks like that, especially not with her experience as a nurse, and especially not with all her support of cancer and hospice organizations. She deserved much, much better than that. Someone should have listened, should have tested, should have made the effort. This was not just some little old lady with a touch of arthritis. This was a woman with undiagnosed cancer. It's a travesty.

I know that there is one thing she would want me to urge you to do, something I wish I could have done for her. If your loved one has symptoms, but no diagnosis, ask this simple question: Could it be cancer?

Cancer is a sneaky disease. It can hide in organs. It can mimic other diseases. If your loved one doesn't feel right and that sense grows over time, demand to know -- Could it be cancer?

Many times, the symptoms don't show up until it's too late for cure, but that doesn't mean it's too late for comfort. Every person deserves comfort care and pain management. It never occurred to me that cancer was her problem. I thought it was her heart. I expected her to tell me she needed a stent or new medication. Anything but cancer. But I know now I should have asked. Could it be cancer?

For that reason, and because you care, make sure to ask when your loved one doesn't get better. Could it be cancer?

And if it is, don't stop there. Ask what can be done, not just to cure, but to comfort. Tuck this reminder away in your mental caregiver file. Don't stand on the sidelines and hope for the best. Don't wait for a doctor to suddenly become telepathic. If your loved one is not feeling better, act. How I wish I could have done more. Please remember her, remember her story, and do for your loved one what I could not. Press for answers. Could it be cancer?

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