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Woman diagnosed with cancer frustrated with wait times

Waiting for answers
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Susan O’Connor, diagnosed with stage four bone cancer, is frustrated with wait times for CT scan and appointment with oncologist. Photo submitted

They say life is a waiting game.

Waiting for the big promotion. Waiting to lose weight. Waiting to get married. Waiting to reach the legal drinking age.

But, for Susan O’Connor ,diagnosed with stage four bone cancer, the waiting game has turned into more than a waiting game.

It’s turned into a garish nightmare that she can’t seem to wake up from.

O’Connor, a 64-year-old mother and grandmother from Sylvan Lake, was diagnosed with bone cancer on Sept. 3. For several weeks she had suffered debilitating pain that seemed to start at her shoulder and radiate throughout her body causing her to walk with a cane and spend endless sleepless nights in agony.

Finally, she asked her family doctor for a bone scan, somehow suspecting the worse case scenario. She had suffered from breast cancer 15 years ago and she feared the disease had returned with a vengeance.

It turned out her worst fears were confirmed.

On Sept. 3 she received the chilling news she had bone cancer.

“The doctor compassionately explained that I had bone cancer. The dreaded cancer that I had dealt with 15 years ago had returned (or maybe never gone away.) The doctor went on the explain that breast cancer can often metastasis into bone cancer, then lung cancer, then cancer of the brain.”

Snuggled into her house coat and pjs and sipping a cup of lemon tea in her living room, O’Connor recounts the horrific visit.

“Due to my limit understanding of medical terminology my interpretation of my diagnosis might not be accurate,” she said. “I was just an ordinary person, trying desperately to absorb the horrendous news I’d just received. I was alone. I didn’t have anyone with me to help me understand.”

True to her English upbringing of ‘keeping a stiff upper lip,’ and not sure what else to do O’Connor marched herself off to work the next day.

Outwardly she was her usual cheerful self. Inside she was devastated.

“I was desperate to hear some news. I had an awful cough that wracked my body with pain. I couldn’t get anything to relieve it until I knew whether it was just a cough or whether it was lung cancer.

I was told to wait. So I did.”

On Sept. 11 she took paperwork that had been filled out for short- term disability to her doctor.

“I got there at 4:55 p.m., just before it closed. I gave the forms to the receptionist to give to the doctor to get signed. She, matter-of-factly informed me that it takes up to six weeks to process.”

O’Connor takes another sip of her tea as she recalled the scenario.

“I just lost it. I screamed that I might not have six weeks. That I wanted those forms signed now. That it was bureaucracy gone mad. It was half a page of writing. Why should it have to take six weeks.”

The receptionist, no doubt, in an effort to calm the visibly upset lady down, said, “I know how you feel.”

It was definitely the wrong thing to say to someone who has been just been diagnosed with bone cancer.

“You have no idea how I feel,” O’Connor screamed.

And then, much to her horror, she succumbed to a fit of uncontrolled sobbing.

“This very public outburst was so alien to who I am. I am English and old school. I was ashamed of myself.”

The emotional outburst seemed to bring on stomach spasms and the next day O’Connor, in desperation, had a friend drive her to the emergency department of Red Deer Hospital.

“It said on the board at the hospital it was a two- hour wait. I thought that wouldn’t be too bad. I had waited so long already.”

The first two hours went by fairly quickly. After the third hour, O’Connor asked when she could expect to see a doctor. She was told told they were doing their best, and hopefully it wouldn’t be much longer.

Another hour went by and she began to feel overwhelmed. The constant noise from the candy machines was making her head throb.

“This is a hospital,” I thought. “Why are there no healthy food options?”

With her head throbbing and feeling exhausted from pain and lack of food, she approached reception. She was told to go back to the nurses’ station.

“There was a nurse seeing to a patient and a group of nurses chatting in a corner. I caught their eye and waited for someone to come and see me. No one did.”

It was then this staunch English woman, who was raised to not make a ruckus, did just that.

“I went to the nurses station and banged on the window. A very irritated nurse came to see what I wanted. I begged to see a doctor. I begged for help.”

But apparently, for Susan O’Connor, almost dizzy with pain and exhaustion, Florence Nightingale had left the building.

“She looked at me coldly and said ‘you’ll just have to wait.’

And once again O’Connor lost control of her emotions and sobbed uncontrollably in a public place.

“This is supposed to be a place of care and I have received none,” she sobbed. This is wrong.”

Her sobs did not elicit a response and, finally, she knew she had no choice but to return to the waiting room, She dried her eyes and struggled to maintain her composure, though she was embarrassed and humiliated as all eyes seemed to be on her.

After more than four hours, O’Connor was finally ushered into the bowels of emergency where white coated doctors hustled about, dealing with a myriad of complaints.

The doctor who saw O’Connor was kind, compassionate and understanding. He listened to her story and did preliminary tests.

“He said he would do his utmost to expedite a CT scan and brain scan, but unfortunately he didn’t think he had much influence. He persuaded me to take some morphine home with me and also some anti anxiety pills to help me sleep. I had not slept since that Sept. 3 diagnosis. And then they sent me home.”

On Fr., Sept. 13 O’Connor received a call from the cancer centre. The soft spoken lady on the phone told her she was working late to catch up on a backlog of files.

Apparently, a CT scan had been scheduled for Sept. 25 and a consultation with an oncologist set for Sept. 24. A brain scan wasn’t mentioned.

However, after O’Connor told her she was also experiencing cluster migraines the lady agreed a brain scan should be scheduled as well.

For O’Connor, the waiting game was continuing.

“I spent the weekend angry that I have to wait until Sept. 24 to see an oncologist. Angry that when I do eventually see him he isn’t going to be able to tell me anything because I won’t have had any of the necessary scans done before hand.”

On Mon. Sept. 16, O’Connor phoned the cancer centre to try to get the scans moved ahead. She was told to encourage her family doctor to use her influence.

On Tue., Sept. 17 she was notified a CT and brain scan scheduled for Sept. 20 and she will see the oncologist on Sept. 24.

“Hopefully I will find out what the bigger picture is then.”

For O’Connor, waiting in the wings of the unknown, fearful and without the support of a medical system she feels has failed her miserably, the last three weeks have been nothing short of hell on earth.

“I want the provincial and federal government to be aware of what is going on at the Red Deer Hospital through inadequate funding. This is beyond party politics. We have to do something, because staff and patients deserve better. It is not fair that three weeks of my potentially shortened life have been spent in hell,” she said. “This is not good enough.”

O’Connor said she wants to tell her story even though she has been told it won’t make a difference.

“Just because it has been this way for years does not mean that it has to continue. I’m sure that people said similar things to Martin Luther King and William Wilberforce. It only takes one person to cast a stone in to make a ripple. Please don’t let apathy win.”

Alberta Health Services Acting Communication Director, Heather Kipling said she did not know the average wait times for CT scans and appoinments at the Red Deer cancer centre, but she would look into the matter.