No Need to Wait
The article can be found here. but I have cut and paste the article at the bottom of this post in case this link ever disappears.
A while ago I wrote about how I panicked when the Tom Baker Centre had decided that I had graduated out of my annual follow-up appointments. Reading today's article made me realize how very fortunate I had been - and for so long, too.
I remember when I had my first appointment at the Tom Baker. Talk about a whirlwind. Following my parotidectomy they did a biopsy of my lump - standard procedure - and found it to be a bad guy. I don't think it was even a week after my surgeon told me the news and I was already walking into the Tom Baker with my parents to find out what was going to happen next.
I met so many resources that day: my oncologist, my nurse, my dietitian, a psychiatrist (I don't call him my psychiatrist because my family and I never made use of his services after that day. Was it pride? I don't know, but I think we handled everything well.) and many volunteers who help "cheer up" such a serious facility. Like I have mentioned before, I would love to give back and be one of those volunteers someday when I have the time they need of me. It was then that they decided that I would undergo 45 treatments of radiation just to make sure there were no lingering cancer cells. My dietitian told me what to expect as the treatments went on and how I was supposed to rally back by consuming as many calories as I could - you would think that would be a lot of fun! A few days later I was back for them to take a mold of my face so they could create my treatment mask. For the record I'm not sure what that mask thing is called.
And a few days after that I was up on that treatment table getting nuked five days a week for nine weeks. It seemed completely trivial at the beginning then of course it got progressively more difficult. My dietitian would constantly be on me to drink more Ensure and to try and eat as much as possible...a tricky feat considering the radiation was making my throat and mouth uncomfortable. My nurse would coach me on how I should slather my neck and cheek with Glaxalbase and gauze at bedtime to keep myself from going all crispy. Oy, the flaking! What an experience for a girl who had never experienced flaking sunburned skin in all her life!
I will always remember my cute radiation tech, though, with his cute New Zealand accent. Hearing him ask me if I had any "quistions" five times a week was a little bit of sunshine through it all.
And then just like that I was done. Free to bounce back and carry on with my life. A little bit of turbulence - a bumpy ride - and now back to our regular course.
So if you have read through all that and are still here I'm now going to comment on today's article. My experience was quick and relatively painless. Diagnosis - assessment - treatment - done. It was practically instantaneous from the minute they found out I had cancer. There was no time for me to dwell, barely any time for me to grieve or feel sorry for myself. It was just get her done and on with her life.
To read an article where the gentleman had to wait six months before his treatment could begin...I could never imagine what he was going through. Six months of sleepless nights wondering what was happening in his body every night he had to wait, would they still be able to treat him in time or was he getting worse? Six months of worry - and I believe that a part of the battle with cancer is mental, in your attitude, absolutely - would wear a person down and exhaust them. A waste when they need that strength all the more at a time like this.
And then to find out that some don't even get treatment at all?! How would I have felt if they had decided that I was chosen to have better odds for survival compared to the lady I had just met in the waiting room? To find out that I was the lucky one and they were going to treat me, but she would just have to tough it out?
How has so much changed in the 8 years since I had my treatment? Where are all the specialists? Where is all the money?
I used to be so proud of our health care system when I would talk to Mijo and other American pals. Now I'm not so sure. It is still wonderful that we do not have to worry about personal costs to maintain our health, but obviously the costs still come into play in the bigger picture. But if it turns out money that could be used to help all our neighbors and friends who are suffering and in discomfort is being spent on trivial things like that "fake lake" they keep mentioning in the news then I will be heartbroken. That's usually the case, isn't it? But I'd like to try and think positive.
Cancer delays leave patients in agony
Faced with fewer staff and more work, Alberta oncologists say they have been forced to make life-and-death decisions
By Jamie Komarnicki, Calgary Herald June 13, 2010
A part from the occasional sniffle and upset stomach, Boyne Lewis spent the first 68-and-a-half years of his life in good health.
The regular clean bill only made the diagnosis his doctor delivered in January more difficult to take: the Medicine Hat retiree had prostate cancer.
"I had no big medical problems at all. The first thing was the 'Big C,' " Lewis recalled.
"I never dreamed I'd be a candidate."
The diagnosis was unsettling, but knowing the cancer had been caught early enough for treatment was a relief, said Lewis.
Further good news came in March when he was referred to Calgary's Tom Baker Cancer Centre and learned he was a candidate for radiation.
Then, the bad news. The soonest appointment was the end of June -- six months from the time he was diagnosed.
Coping with the emotional toll of the diagnosis was difficult enough. Waiting for treatment knowing the cancer was spreading, said Lewis, was a different kind of anguish.
It's a medical limbo experienced by a disquieting number of some of Alberta's most sickly cancer patients.
Revelations recently that those with an advanced form of the disease in Edmonton are being denied treatment, while some in Calgary are waiting longer, spark some sobering questions around whether patient care is being seriously hindered by funding and staffing woes.
Faced with fewer staff and more work, oncologists have been forced to make life-and-death decisions, top Alberta cancer doctors say.
Patients whose treatment would save their life were bumped to the top of the list. Those all but certain to die of the disease were left waiting, uncertain if they would ever receive the procedures that could usher them into a less painful death. In the worst-case scenario with the Edmonton patients, they were left on their own to die.
It's not an easy call for any doctor to make, said a University of Calgary bioethicist.
"It's always tough. The role of the physician is to do the best with the patient before them," said Dr. Ian Mitchell.
"The role of the administrator is deciding what resources will be given; the role of the minister and the taxpayer is to decide how much money they're willing to put into health care."
Sandwiched somewhere in the middle, though, are patients like Lewis.
"Very uncomfortable is the only way I can describe it," Lewis said, of the lag time between treatment.
Lewis wasn't sick with the most advanced case of cancer, but he knows well the powerlessness of letting others determine your fate.
"To learn somehow in the bureaucracy a decision had been made that things would sit on the back burner -- maybe from a technical perspective that's appropriate. As a regular person, it's not appropriate."
Lewis, who was so distressed that he sent letters to the cancer centre and politicians arguing his case, eventually received treatment in early May.
Others haven't had the same chance.
The situation in Edmonton, where some critical patients are being turned away from chemotherapy treatments, is particularly dire.
In Calgary, roughly 10 per cent of patients, particularly those with the worst cases of cancer, have had to wait up to six weeks to be treated.
"We do not ever have a situation where we do not provide an appointment," noted Dr. Peter Craighead, medical director of the Tom Baker. "But sometimes the appointment (wait time) is longer. Obviously sometimes people are frustrated."
The majority of patients are seen within five weeks, although a national target aims for a two-week period.
In the chronically overcrowded Calgary cancer centre, the staffing situation, at least, is expected to ease in August, with more medical oncologists coming on board.
Cancer patients are certainly not alone in their battle against time.
Mitchell, the bioethicist, noted that similar problems ripple throughout the health-care system.
Triage -- the process of prioritizing patients according to the severity of their case -- takes place in emergency and operating rooms every day, he said.
"There's long wait times for everything and difficult decisions are being made in all sorts of conditions," Mitchell pointed out.
Physicians do their best with the resources they have, Mitchell said. Relaying the practicality of the situation to a patient suffering from a terminal disease is delicate and difficult, he said, adding, "It's pretty awful if you're in the middle of it."
It's a grim situation that's become uncomfortably familiar for Janet and her husband, who was diagnosed on April 30 with esophageal cancer.
The Calgary couple is trying to stay positive, but it's difficult not to dwell on the words from their doctor: without treatment, Janet's husband has six months to a year left to live.
Though he's a candidate for surgery or chemo, as her husband awaits an appointment with an oncologist, every second that ticks by without treatment is nerve-racking, said Janet, who asked that the couple's names not be published. Her husband is seeing a naturopathic doctor while he waits for a pre-treatment oncology appointment at the end of the month.
"When they tell you he has six months to a year to live with no treatment, it scares the hell out of you when you're waiting."
Countering those fears is one of the roles oncologists play, explained Craighead.
Connecting with a patient as soon as possible is critical, he said. Even if they can't be treated right away, it's important they know what options they have, he said.
Some patients in Edmonton, though, have been left with no options.
And the staffing issues hampering the Alberta cancer facilities aren't going to disappear just by adding a few more oncologists, experts warn.
Both the U of C and University of Alberta medical schools will be accepting fewer students in the fall, despite an earlier vow from the province to graduate more health professionals.
Patients 10 years down the road are the ones who will feel the effects of limiting the number of medical school spots this year, Mitchell argued.
As for Lewis, the retiree hopes he's put his fight with cancer behind him.
The Tom Baker medical staff, Lewis said, did a "damn good job" providing care, but they face unthinkable challenges.
"The doctors find themselves in a position where they have to play God," Lewis said. "That's a tough position for them to be in."
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