RunOnRon has been very quiet for many months largely due to the journey we have embarked upon. We are beginning to see a bit of the light at the end of the tunnel….hopefully. The next three posts will explain what has occupied our time and lives. Others may be able to relate to our experiences as many have, are/or will, experience similar challenges. I hope you enjoy these posts or, at least, take something away from them. Enjoy. Ron.
In my opinion we are exceptionally lucky in Canada to have a very high quality of health care at minimal cost to ourselves. Yes, we pay our monthly fees that is annoying at times, but when we actually need serious medical treatment, it is there for all. At least we are not selling our homes to pay for the health care of a family member or just passing away, like many of our southern neighbours. People complain about the wait lists and lengthy time to receive treatment but I think most of those complaints refer to non life-threatening illnesses. In my experience, if there is a serious threat to life, there is immediate quality care. If we’re not happy with the service, we can always pay for it elsewhere.
Having extolled the virtues of our exalted Canadian health care system, there are always anomalies and challenges to everything. We have been attempting to navigate this healthcare organism for the past year and have experienced many incidents that are, at times, cumbersome, imperfect, and almost comical.
It all began about a year ago when Miss Caroline began experiencing extreme pain in one of her legs. She attended her local GP who had provided her competent care for the past 20 years. Upon attendance to the good doctor’s practice, he took a cursory look at her leg and decreed she had pulled a muscle that required rest and a few simple exercises.
Hobbling home, Miss C. valiantly soldiered on, continuing to work in a pharmacy where she was required to stand on her muscle torn appendage much of each day. On one occasion, being a helpful sort, she attempted to limp from behind her counter at work to assist an enquiring customer find where a certain item might be located. Unfortunately, she only made it half way to the desired item and found herself sprawled on the hard concrete floor looking up at her customer.
After about a month of no progress with the pain in her leg and another incident where one of the dogs pushed on her leg causing her to descend, once again, to our sundeck floor, with such pain that she could not get up, she booked another appointment with her doctor. I was, of course, off playing tennis or something selfish, and was of no help whatsoever. Back to the doctor, he finally agreed to have an x-ray taken, no doubt against his better judgement.
His suspicion was confirmed when the x-ray returned to report there was really nothing wrong with this most petulant patient that a little rest and appropriate therapy would not cure. Caroline hobbled home once again and continued to work every day. The pain was, however, visibly taking its toll. The heartless one, me, also thought she was just a whiner and booked a nice two-week holiday for late January in Costa Rica, some 5 months after she first began experiencing the pain. I was thinking that, surely she would be healthy by then. After all, I would have been!!
Miss C. limped through Christmas and January with no improvement to her leg. She continued to work but made arrangements for special disabled accommodation in the airports for our upcoming trip. Again, the heartless one, scoffed at this unnecessary request but did enjoy ascending to the head of long lines and seeing someone else pushing her in a wheelchair through airports.
Costa Rica was wonderful, but little consideration was offered to disabled hobblers such as my wife. I am not sure how she managed to limp through the towns we visited and down to the restaurant every night where we had our meals. We stayed in rented homes, thus home cooking and restaurants were necessary for our sustenance. In Coco Beach there was only one restaurant near our residence and it was a ½ kilometer walk along a little dirt road. This served to be an ever increasing challenge. Otherwise, she spent most of her time around the pools, which wasn’t so bad. I, of course, spent my days running on the beaches, playing tennis, exploring the two little towns where we resided, and being my usual irresponsible self. I did rent a little golf cart for a couple days to show Caroline what she was missing. Adding insult to injury, she was stung by a vicious scorpion at the pool on her second last day. Luckily, it caused no greater harm than a bee sting but the uncertainty caused much concern.
Upon our return Miss C. resumed her employment and visited the doctor once again. No change in diagnosis was forthcoming even though the leg was gradually becoming worse. Finally, she asked me to take her to Emergency because she could not endure the pain any longer.
Emergency rooms in Canada are clean and efficient but they always involve several hours of waiting. I was not excited about the prospect of spending a Sunday in an emergency ward but agreed that she could no longer tolerate the pain. Something had to be done.
On this chilly Sunday afternoon, as advertised and experienced, the waiting room was full. People were sitting in rows like theatre patrons while waiting patiently to be seen by some over-extended doctor. Our fellow patients exhibited visible injuries, could be heard coughing, or had pained expressions on their faces. Everyone had a loved one who was there to offer their support. Amazingly, I was not elsewhere participating in some frivolous pursuit.
After about an hour in the theatre, watching nothing at all, we were directed to another room where more theatre chairs were filled with ailing patrons patiently waiting. After about three hours we were finally brought into an inner sanctum that offered small curtained cubicles where Caroline was placed in a bed. A nurse eventually appeared, to ask a few questions. “What’s wrong? Why are you here? Where’s the pain? …and a doctor will be in to see you.” Finally, a young looking 20-something man in a white coat appeared to conduct an examination. He asked a few questions but mostly relied on the original x-ray that was about 2 months old by this time and decreed, once again, that this silly woman had experienced a muscle tear and needed physiotherapy. He was in the process of writing out a prescription for physio when, the usually somewhat shy and reserved Miss C., emphatically, requested a second x-ray. With a condescending look, the white coated man agreed to allow this obviously unnecessary procedure.
Another hour, Caroline was wheeled off for a redundant x-ray. It was performed and she was returned to her little curtained compartment. An hour later another doctor appeared, not the same one that had initially diagnosed the muscle tear, but a new young 20-something doctor in a white coat. Seeming almost apologetic he conceded that the original radiologist had missed a tumour that had been growing in my good wife’s leg, probably for the past 6 months or more. She would need to be immediately admitted to hospital and further tests were required.
A tumour!! Was it benign? Was it the ‘C’ word? Was she going to die? What now? No answers and a lot of questions. Caroline was placed in a hospital bed and spent the next 10 days being prodded, poked, tested, and scanned. Not many of the tests were fun or lacked pain. She was finally allowed to return home but given an appointment to see an oncologist at the Cancer Clinic. It seems she had a tumour all along, it was benign, but it was growing and had eaten away a portion of her leg. She needed medical treatment immediately and was told it was likely too late to save the leg. Lots of tears.
While Caroline was in her hospital bed, she was briefly visited by the doctor who had given us the original tumour diagnosis. He went out of his way to offer an observation that we would find invaluable throughout our hospital experiences. He said, “You are your own best advocate. Be polite, but be persistent. Don’t be rude but make sure you are heard. You will have much more credible care if you are speaking out for yourself in a courteous manner than if no one is speaking out for you or you alienate everyone around you.” Thanks doc. Good advice.
When there is a diagnosis of anything related to cancer, patients immediately become Cancer Clinic patients, at least in Kelowna. They go to the head of the line. The Cancer Clinic is a bright shiny new building attached to the side of Kelowna General Hospital. It seems to be very organized and very well funded, no doubt by such organizations as the Terry Fox Run, the Canadian Cancer Society, The Red Cross, and numerous others. Cancer seems to be big business.
We attended our first appointment at the Cancer Clinic with much trepidation. We arrived, having never entered this building, or ever wanting to. Amazingly we were greeted by a good friend who was seeing the same oncologist. Ben Lee, a respected Kelowna City counsellor, was in the waiting room as well. He appeared in the peak of health that day and was certainly negotiating his own mobility. The reality of our situation came home to roost when I learned he died a week later….of cancer.
We visited the front desk to identify ourselves and found the name of our oncologist in a long line of other oncologists. We were told to wait in the waiting room and nervously talked with my friend and his wife. They were old hands as my friend had been diagnosed with cancer several months before and had been a frequent clinic visitor. He forewarned us about our oncologist being a bit negative at times as he had told my friend on more than one occasion to “get his affairs in order”. Yikes, that sounded ominous.
We were eventually ushered in to a small room and met an unassuming Asian man of about 40 years of age. He had apparently reviewed the numerous tests that had been performed. He informed us that Caroline would likely lose her leg but there was a medication they could try that had been developed only a few years previously. It apparently worked, in some patients, to reduce the tumour and rebuild the missing bone. She would receive this very expensive medication, which was reportedly about $1,500.00 per injection, at a rate of one shot per week for the first month then one shot monthly for a total of six months and possibly nine if there wasn’t enough progress. In fact, he went on to suggest that if there wasn’t visible progress in a couple of months the leg was coming off. He further went on to say there was an additional problem that would kill her anyway. They had found traces of multiple myeloma, which is a blood cancer. He informed us that my wife only had 8 to 12 years to live and those wouldn’t be the best years of her life. “Get your affairs in order” was ringing in our ears.
We began to understand our oncologist’s bedside manner. It was very blunt, forthright and no punches were withheld. He became our “Doctor Death”. How does one respond to such a person? He is the professional who we rely upon, but very matter-of-factly decrees death sentences, then goes home to play with his 3-year-old child. We have learned, however, that his facts are not always accurate. At one point during treatment he was ready to discontinue the medication and chop off the leg because the x-ray, as he read it, showed no improvement. Luckily the surgeon, who would actually be performing Caroline’s eventual surgery (let’s call him Dr. Optimism) had the very opposite opinion and said there was good progress. He had much more experience with this type of tumour and reading x-rays. Dr. Optimism, thankfully, won the day.
We thereafter began a regime of visits to the hospital about every two weeks for testing and scans, then a visit with Dr. Death, and finally the $1,500.00 shot once a month. I found this like visiting a dentist, knowing he was going to conduct a root canal, once every two weeks. Hospitals have never been kind to me.
We became fairly proficient at navigating the various requirements to facilitate our hospital visits. There were parking spots to find with parking lots that were chronically overflowing, wheelchairs to access at the hospital, equipment to facilitate a disabled person at home, imaging and laboratory rooms to find, and the monthly depressive sessions with our Dr. Death. The poking, prodding, scans, and tests were endless. It eventually evolved to the point where my usually upbeat partner would become very quiet in anticipation of our trip to the hospital and a few tears would be shed the morning of each visit. It was initially the opposite for Dr. D’s appointments as we arrived looking for some optimism and good news but were repeatedly provided the worst case scenario. Caroline would usually leave in tears and be depressed for a few days after each visit. The absurdity of his negative aspersions were highlighted after our second visit with Dr. Optimism. Remember, Dr. O. saved her leg on the first visit. Then on our second visit with him, this young looking, formerly South African surgeon, reviewed the most recent x-rays with us, and informed us that everything was on track. Surgery would be in early January to remove the remaining tumour and rebuild the leg bone. He emphasized there would be no leg chopping and the likelihood of Caroline having full use of her leg was very good. We left the office beaming. A few days later, in an appointment with Dr. D., we informed him of our optimistic diagnosis. Dr. D., in response, informed my smiling wife that the diagnosis may be true but the tumour could return at a future date and the multiple myeloma would kill her anyway. By this time, we were so aware of Dr. D’s mannerisms that we just laughed.
Pain medication was also an interesting experience. Caroline was chronically in pain at the beginning and was prescribed some form of opioid for relief. She began taking these pills but experiencing wild mood swings, from almost jubilant to teary-eyed depression. Caroline is not one to take pills or any form of mood altering substance. She has never smoked, only had a few sips of alcohol in her life and certainly has never used illicit drugs. After about three days on the pain killers she decided that taking the medication was a greater imposition on her life than the pain. Amazingly, after only three days of taking this drug, she stopped cold turkey, but went through withdrawals for several days thereafter. Those were some powerful drugs. I shudder to think if she had taken that drug for several months. I have seen the results in my clients who became addicted to these drugs. It’s not pretty.
The pain was back, however. How would she deal with that? We had heard of the positive influence on pain by such non traditional interventions as marihuana. Caroline had no experience with this substance and I hadn’t had anything to do with it since my teenage years. A friend, however, has used this substance since our teenage years and offered a little non traditional medicinal relief. She provided us with a little vial of marihuana pills, some marihuana honey to put in her tea, and, for the care provider….me, a joint. Well, I wasn’t sure if I needed any treatment but accepted it all. Caroline had her doubts about the whole thing but, with the pain imposing upon her life, tried one of the pills. With no experience of this nature, likely no resistance whatsoever, and the extreme potency of today’s pot, she was blitzed. She hated the feeling and was very scared even though I didn’t hear anything about pain. When the substance finally wore off after a few hours she swore she would not touch anything like that again. Medical marihuana was out. So for the next few months it was ice and not much else for the pain. Thankfully, as the medication began to work its magic, the pain decreased, she became stronger, and was eventually able to get out of the wheelchair and use only crutches to get around. Her mood improved with her increased health and nothing Dr. D. could say fazed her.
We are nearing 17 months since the pain initially started. Caroline has graduated from mostly staying in bed crying, to getting around in a wheelchair, to dancing on her crutches. The surgery is scheduled for January 3, 2017 and the surgeon is optimistic for a full recovery. We are planning a river cruise in Europe for the summer of 2017. This has been an amazingly difficulty time, certainly more so for her than I, but a challenge for me nonetheless. We have had world class care, but it took understanding and negotiating a complicated system, standing up for ourselves, and following the regimens laid out for us. Many countries would not have this level of care, her leg would be long gone, and we would be significantly poorer. I am pretty certain we live in the best country in the world.