chapter 2: part 4

cntinued from part 3

Phoning the Cancer society was a good start. I called the office nearest our house and explained Hal’s condition to the kind voice on the phone and told of my worries, that we were new at this and that we needed to talk to other people in this predicament. What resources were available to us? The woman on the line described various support groups including the one nearest to us, and promised to mail all the information we needed to get started.

"There now," said the inner voice, " You’re beginning to take charge."

A big envelope stuffed full of pamphlets arrived two days later. I felt such relief that someone had responded to my need. I studied everything. There were casual drop-ins, formal paid self-help classes, one-on-one buddy services. Hal was curiously content to leave the sorting-out to me and agreed that he would follow any course I thought was right. He focused on the thought that if he returned to work then he would remain well. Unspoken was the understanding that he would work at staying well and I would do any fighting necessary to help keep him there.

This was the beginning of our new team effort. After sifting through the pamphlets and consulting Hal with a synopsis of what I’d read, I arranged for us to join a casual Wednesday afternoon drop-in group of cancer patients who met to encourage one another. They had an informal staff leader and it was very low key. It turned out to be an excellent place to start the journey back.

We got a kick out of walking the several city blocks to the meeting on the twelfth floor of an office building. That simple act gave us a feeling of control. We were directed into a large sunny room with about nine people there; we were greeted by everyone and invited to have refreshments. Punctually, the leader brought the group to order and the format was: each person introduces himself, tells a little about his cancer and what he’s doing with his life, and so on. Not one person in the room looked sick. I was the only caregiver in the room that day. That’s what we’re called, caregivers. It was made clear that I was there to support and if I needed support myself, then find another group. I was there for Hal. Period.

Some members had been in remission for months, even years, but kept returning to give and gain strength from the group. We met James, a man in his mid-thirties who had the upper lobe of his left lung removed five years back and was told then that his time was limited. He lost his fiancée over this, but he feels good and he’s alive with continued positive results from his periodic check ups.
There was Sylvia, a woman in her late sixties, who was the only survivor in the world of her particular type of cancer, diagnosed seven years previously. She made her living writing crossword puzzles and children’s’ books and the morning after her surgery, she claims she sat on the edge of the bed and worked steadily on her latest book. The doctors came in to tell her the grave news. She positively twinkled when she continued, “Nonsense, I’m too busy finishing my book.” No matter what happens, she could die tomorrow and chances are it would be of old age. I got the impression that being feisty is an asset.

When Hal described his condition, several people murmured, “Mary. You’ve got to talk to Mary.” She was one of the members, not present that day, who also had secondary cancer of the liver. That is something that’s hard to earn at first; the original site is the main cancer and forever takes precedence, and anything after that is the secondary site. Thus, Hal had colon cancer.

We learned of the anger people can show to cancer patients. One man said his next-door neighbor of many years at the cottage turned hostile when she learned of his cancer and slammed into her cottage whenever he came into view.
At the other extreme, one member refused to tell anyone and swore his wife to secrecy. He claimed he wanted this privacy and yet he came to the group to talk. Actually he sat there and mostly listened, except to complain, “No one would understand.” I wondered then and wonder now whether some of the complaints were a way of displaying anger at being the “victim” of a disease. Perhaps this causes shame.

The wonderful grapevine did its work and that night, Mary called Hal. They had a long talk and she told him about the less traditional treatment she had opted for and explained it in detail. She said she was free of the disease at present, two years later. Hal felt good after the talk but was prepared to hold off any decision making about treatment until he heard what the cancer specialist had to say.
He remained content to have me find approaches to handle his recovery; he would continue to concentrate on his job assignments.
to be continued in chapter 2: part 5

Chapter 1: Part 2:

Continued from Part 1
Hal had always been preoccupied with his digestive system and each morning he downed a glass of orange juice mixed with a tablespoon of bran. He was convinced this mixture would keep his body in good running order.

The day after the trip to the Emergency department, he made an appointment to see Sara the family doctor, and then began a long and fruitless search for the source of the pain. The ultra sound led her to believe he might have acute gastroenteritis, an inflammation of the stomach and intestines. The medication she prescribed seemed to work for a while and then the pain returned.

I never accompanied him on those visits and I don't know how forcefully he presented his case if indeed he did.

This pattern of pain, no-pain continued off and on and next Sara tried treating him for lactose intolerance and put him on a milk- free diet, which did have its amusing moments. We drove to the Jewish end of Bathurst Street the next Sunday searching out bread made without milk. Believe me when I say you should not ask the proprietor of a kosher bakery if his bread is made with milk.

Sara took him off caffeine and alcohol and he found the former the hardest. He always drank his coffee so strong it had the consistency of molten lava.
"I can't get through the morning without at least a semblance of coffee," he lamented and we searched the stores for substitutes. He found one or two that helped; the flavour was pallid but the combination of holding a cup and saucer in his hand and his active imagination made him feel less deprived.

Throughout this time, he maintained his firm belief in working his health around his life and insisted on carrying out his work assignments and meeting his deadlines despite these upsets.

The pain returned without any real pattern and Hal was seeing Sara more frequently. She was concerned about the possibility of an ulcer, but still she was baffled and in July had her secretary set up an appointment for September with a Gastroenterologist; she believed the problem would be solved by then and he could cancel.

One evening the phone rang and it was the specialist calling; he wondered why Hal had made the appointment so far in advance, and Hal told him Sara's opinion and described his symptoms. The doctor said he thought from Hal's description that there was more than had been found so far and he might consider coming in earlier.

We were so surprised that a specialist would take this trouble that we irrationally did nothing.

The milk-free diet didn't seem to alter his condition. The pain lay dormant for a while and then attacked again, usually at night about the time he sat down to dinner. He'd leave the table and go upstairs and I'd find him huddled on the bed feeling alternately clammy and sweaty, often drawing his knees up and moaning, "Jesus." I'd stroke his head and rhythmically run one hand down his arm, hour after hour, trying to draw the pain away from the body. We didn't get much sleep.

I'm the kind of person who can read morbid implications into a hangnail, but when something real like this came along, I went into a denial phase that still astounds me when I think back. We both seemed to believe everything would be okay; this enormous belly pain would pass and we could get on with our lives. We discussed these pains with friends and no one ever suggested we get help from other sources and it obviously wasn't getting through to the two of us. We had never coped medically with anything more serious than a child's emergency appendectomy and occasional broken bones and our minds simply weren't geared for anything more.
Continued in part 3