Colon Cancer Care: My Experience as a Care Giver

* This is a fictional account drawn from multiple stories.

Giving colon cancer care to a family member can be the most difficult role. It is so hard to watch someone you love suffer through tests and procedures and to worry that they will not get through all of the surgeries, radiation and chemotherapy. This is my story of caring for my now ex-husband during the time he was diagnosed and treated for late stage colon cancer.

Before We Knew

Bill was in his late 30's when we met, a free sprit and struggling musician. He was hard-working, active and optimistic about life. His personal motto was "hope always." And he tended to live his life just that way.

In 1997, when he was 39, he began to complain of stomach pains, usually after a long day of work. He was working as a waiter and would work 10 to 12 hour shifts on weekends. By the end of the shift, he would be in pain. A few doctor visits pointed to an ulcer. The doctor advised he would be best served initially with a better diet and frequent check ups. There were no other symptoms. But over time the pain became more intense and more frequent.

The Diagnosis

We had finally saved up enough money to start medical insurance, and had put the paperwork in the mail on a Friday evening. That night his pain exploded. He was doubled over in pain, could not walk or speak clearly. When we got to the emergency room, he was nearly crawling in the door. And the insurance was not yet in effect.

The tests revealed that the pain was from a significant tumor in his colon, which had ruptured and was threatening his life. Immediate surgery was ordered. He had a large section of his colon, the tumor and surrounding tissue removed.

Treatment

Weekly trips to the oncologist followed, with time spent in a recline chair with an IV of chemotherapy. This was a dreaded, painful process. The staff was overly happy and gracious, but the chemo hurt and the process was very grueling. After each trip to the doctor, he would sleep during the 20 minute ride home and then crawl into bed to wait for the effects to hit.

The chemo gave him very bad side effects. He experienced horrible mouth burns and the inside of his mouth was covered in a raw, red burns. It was almost impossible for him to eat or drink. The first three months was just misery for him. He slept a lot, was easily agitated and in a great deal of pain and discomfort. He lost weight from the inability to eat with the mouth sores.

Colon Cancer Care Giver Point of View

Every time I attempted to soothe or ease the situation, I failed. In some cases, I just made it worse. It was very hard, as the colon cancer care giver, to steel my resolve to make the trip to the doctors, knowing it would be so painful for him.

During most of this time, all he wanted to do was sleep. I felt helpless and it was frightening as there was no place to go for the answers to questions. I was also dealing with a toddler and going to school. The combination of conflicting pressures took its toll. The lack of insurance meant I had to meet with government agencies, hospital administrators and social service staff to try to manage the escalating medical bills.

It was a long three months of treatment, another three to six months of very slow improvement. As the chemo moved out of his system the recovery process began to move more rapidly.

Recovery

About a year after the surgery and months after the chemo, Bill started to return to the world. He became more energetic and engaged. He was now past the mouth sores and could eat in moderate amounts, so his health was improving faster.

It took a full 18 months for him to return to the energy level and mental function of the person I knew. The anxiety, frustration and intensity of the situation aggravated our floundering relationship and we were no longer able to sustain the marriage. Bill moved out 18 months after his surgery. He is now 12 years from that surgical date and has returned to college.

Parting Thoughts

It is often more difficult for the colon cancer care giver. The patient is sleeping or medicated and can't see all the suffering that you go through. The hospital and doctors focus on the patient, but you may be struggling with your own process of coping with the illness.

We were lucky. Despite the late diagnosis, Bill recovered. But the process of fighting cancer is life altering. If you are the caregiver, get support for yourself. There are groups that give colon cancer support for the caregivers. Take time to feel all the emotions of this process. Talk to others who have dealt with the caregiving experience.

It is important for you to manage the process, or it will consume you. Meditate, exercise or find a hobby that recharges you during the times you are waiting endlessly for tests, doctor's findings and treatments.

What you are doing is important. There is no greater fear for most people than to be sick and alone. Being there, caring and loving that person even in the darkest moments makes a difference.

Cancer is an ugly illness, but there are 11 million cancer survivors in the US. While there is life, there is "hope always."

Written by Anonymous - 4/22/09

* This is a fictional account drawn from multiple stories.

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