Many say she lost her battle with cancer.
This is not the case.
She didn't have a chance to battle cancer. Instead she battled bureaucracy and bullshit.
She fought a faulty system. And she lost.
We all lost.
From the moment she entered the Cape Breton Regional Hospital 5 weeks ago, she didn't stand a chance.
Actually, let me add to that because a trail of negligence began before she even came to the emergency room.
For months she complained of a pain in her back. She took this complaint to her family doctor and was told each time to go home and take Advil or Tylenol. Not once was she sent for an xray. Even when she fainted in the office, even when she coughed up blood, there was no attention given. Unfortunately these facts were kept from us, her children, or we would have insisted on action.
By Christmas time she could barely pick up the water pitcher. After the New Year she went back to the doctor insisting she wasn't feeling well. Finally, he conceded that he would send her for a chest xray and told her to go home and wait for a call for an appointment. Nine days later, the call still hadn't come. At this point we urged her to go to the emergency room to seek treatment.
After many hours in diagnostic imaging, it was discovered that she had a tumour in her left lung that was also filled with fluid, which is what caused the difficulty in her breathing. She also had spots on her spine.
For two days she was kept in the emerg because there was no bed for her upstairs. Finally when one opened up, she was placed in the ward for orthopedic surgery. The nurses and staff were very lovely, and tried their best to attend to her, but they have four or five patients each. Sometimes my mother would ring for assistance or pain medication and would wait an hour to be seen. Sometimes she soiled herself waiting for help to the bathroom. My sisters and brother and I came to Cape Breton to help her (along with other family members) But we also had to fight to get her even minimal care. Everything was a battle.
We asked why she wasn't moved to the floor that dealt with cancer patients. We were told there were no beds. Yet every day beds would open up only to be filled immediately. The nurses worked with us to help get her moved, knowing that she wasn't able to get the care she deserved on their floor, that the patient to nurse ratio was lower on 4B. Administration blocked the way every step of the way.
A very valuable lesson we learned in this, is that you must have an advocate to fight for you in this system. So we fought.
They never had any intention of moving her at all, saying that at least she had a bed. I became a rabid dog, calling the bed assignment people, insisting and threatening in order to have her moved. I am not that person, but it is amazing what you will become to protect and help someone you love.
Finally we had a small victory when they put her in a private room in 4B. We thought we had finally achieved something.
It took almost three weeks.
Three weeks of her not receiving any treatment.
Earlier, at the beginning of her diagnosis, she told us and doctors that she wanted to fight it with whatever means necessary. My mom was a fighter. We knew she would battle bravely. Sadly, she was never given the chance. We were told she could have 3-6 months but we were hopeful that she could put it into remission. With my sisters and brother and me by her bedside she laughed, talked, and told us to be positive. We didn't cry in front of her, holding up her spirits until we could collapse in private.
I felt that from the minute the tumour was discovered, my mother was written off.
When the oncologist came to give her the terminal diagnosis, he slumped in the chair and matter of factly said that he wasn't hopeful. And then in the middle of this he took a phone call as we stood there stunned.
When the radiologist said he could offer her treatment to shrink tumours and help with pain, she told him she was ready to fight. He left saying "you have a lot to discuss with your family" and we were left thinking that radiation was to start immediately. Daily we asked when it was going to start. Daily turned into weeks and still nothing.
My sisters and I had to return to our homes and jobs, my brother was able to remain. Every day we spoke with her via Face Time but she started to become less coherent and difficult to understand. My brother felt it was due to the pain meds. We found out that they were constantly asking her pain level on a scale from 1-10. No one explained to her that 1 was the lowest amount, so when she was saying 7, thinking 10 was the least amount of pain, they would jack her up again. This was later chalked up to being a "miscommunication".
It was so hard trying to speak with her, not understanding anything she was saying. We asked if the cancer had spread to her brain but were told no. We asked them to dial back the medication and soon she started to come around again.
Finally one chemo treatment was administered.
She did well. Then she became nauseous, unable to keep anything down and bringing up a very dark substance. When she was still sick after a week, and weaker from being sick, we worried that it was the pain meds instead.
We had a conference call with doctors, asking why radiation hadn't yet been started. The radiologist told us that when he asked her to make a decision she couldn't give one so he was waiting to hear from her. I was in that discussion, I told him, and first of all, she was so medicated she wasn't aware that it was even a question, and secondly, not once was there any follow-up. Once again, we heard the words "miscommunication".
On my last visit to see her, I had her up walking. She was eating a bit, but had lost so much weight. Yet on the last day that I saw her she was a weaker version of her old self, still joking and sarcastic. I left telling her I would be back in a week and a half.
A few days later my brother called to say something was wrong. She had become close to catatonic. She could understand us and squeeze hands in response, but she couldn't speak. He asked again about the pain medications. It turned out that she had been overdosed and was in "opiate toxicity". The explanation was that they had "miscalculated the dosage".
A drug called Narcan was administered, which is used in overdose cases. It drives the opiate from the system. When this happens, the patient experiences not only withdrawal, but the extreme pain returns immediately. My mom became violent, pulling the IV from her arm. Later we found out that it was never replaced and she was therefore without fluid and nutrition for a couple of days. We wanted the IV restarted. We were told that it was hard to find a vein and it would be uncomfortable and painful for her. But starvation and dehydration was more painful in our opinion, so the needle was inserted.
I wasn't able to be there for her last breath.
My father is to have surgery (also as the result in a missed diagnoses from the same family doctor) in Halifax and so I stay here to be with him
My sisters were with her, and held the phone to hear ear while I told her how much I love her. Around 5.15 am they held her hands as she slipped away.
It is hard to believe that a woman so feisty and full of life is gone.
It haunts me to know that her last weeks were spent in the hands and mercy of "miscommunication".
This whole ordeal has been one fucking miscommunication after the other.
The short time we were told we would have was taken from us.
I am angry. Our hearts are broken. We are shattered.
I thought maybe writing this down will help it make sense.
It doesn't.
It is senseless.
I miss my Mom.
