Friday, November 29, 2019


This is indeed a long post so feel free to skim or just know that I am OK or read it all.

Over the past two months I have written this post many times on the computer and in my head mostly but worried that I would be guilty of whining now that the pain is managed. I wrote a lot about a horrible ER hospitalization that is over but remains in my memory still with intensity. Again my guilty fear of whining has got in the way. So I wrote in my journal while mulling everything over. and not sending. Now I recognize that my slow recovery while back on chemotherapy has taken such a toll that mentally my recovery is perhaps even worse. Over a month ago while two of my oldest and best friends were visiting I fell apart saying I was done and felt I could not do this anymore. I also texted two other close friends basically saying the thing. I wanted to just give up. But I guess I was in such bad shape that I made decisions that were crazy. That piled on more shame and guilt. What the fuck. This is year 8 of cancer and I have endured much but I have never felt that low physically, mentally and emotionally.

A couple of weeks have now gone by and maybe tonight is the time for posting. It is November 29 and I went to 3 appointments this afternoon. The first was to have my port de-accessed. I have it accessed for bloodwork the day before chemotherapy and it is left accessed for chemo. My bloodwork has been tanking for weeks and this week it was worse. Hemoglobin below 80 means transfusion time and mine has been going down steadily, this time 79. So when I saw that yesterday I was surprised chemo would go ahead. I asked for a doctor's opinion and a GP showed up explaining that the protocol for Gemcitabine allows for low blood counts. When she did agree that I would likely need a transfusion next week that was it for me. No more chemo and especially because this was the last one for now anyway. I came home but we forgot about de-accessing my port thus the first appointment today. After that I walked to another building and had my embedded pain pump filled. The last event of the day was an annual eye exam. Good news there~~not much change after 3 years of big changes, probably due to treatment.

Ending chemotherapy should be celebratory news but I am so exhausted that I am not there yet. With my pain pump working and the end of chemo I do look forward to a slow recovery physically with hopes also that my glass half full attitude will return. For now, I admit that I am thankful that my cancer appears to be stable. Please know that I am not fighting breast cancer, nor should you see me as inspirational~~most us are simply enduring what we have to, until we cannot. The words of battling or fighting cancer are nonsense. What happens when we die? Were we failures because we dis not fight hard enough, try hard enough? I also dislike the word survivor. Those of us with breast cancer whether Stage 1, 2, 3 or 4 are not survivors. There is no cure for breast cancer. There is hope. Hope that some day the research will find out how breast cancer starts and evolves. Hope that we can get the most out of what life we have left. Hope for no pain and for many other things. Once I recover from the toll the past several months have had on me, maybe I will be able to get involved in the need for more funds for research and more care for those in need, rather than cuts all across Canada. 

The following was written awhile ago.

When I was discharged from Hospice about 10 days after the final surgery I felt there was something not quite right about it. But the doctor and staff felt that I was ready so I agreed and walked over to the pain clinic to have my pain pump checked and later that afternoon I returned for chemo. Wrong decision. I felt really sick. I realized then that I should have stayed at least another night in hospice. The next morning I returned to the pain clinic to have the remaining staples removed from my surgical sites. My doctor walked in just as the staples came out but also just in time to hand me a garbage bin for my projectile vomiting. No one seemed to be concerned and chemo was blamed. I vomited all the way home and my biggest sadness then was that no matter how hard I tried, I could not get out of bed to go to my monthly support at the cancer agency. I went the next week to my usual appointments and had chemo #2 on the Thursday. Again, I felt nauseated and the next day the vague headache I had had since even hospice got really bad and unless I lay down without turning my head it was from my point of view, really scary. I missed another important event, a major worldwide climate strike as there was zero chance of attending. I did call the pain clinic and the cancer agency, knowing the weekend was upon us. Everyone said to go to ER if I felt worse.

By Saturday my headache was worse and nausea and non stop vomiting started. I could hardly bear the idea of moving from bed into the car and it took Dick a long time to convince me. In my nightgown and slippers we made it to ER where I lay on hard chairs except for the brief procedural steps. I was admitted eventually and I felt like I was in a nightmare. Bright lights, so much noise and I was still vomiting. A few hours later I had a brain CT which seemed to the doctors to be a major subdural hematoma. Back to CT for a spinal CT and it turned out instead to be a major cerebrospinal leak or leaks. It was not until Monday that my doctor appeared to tell me the treatment. A blood patch which entailed drawing about 10cc of my own blood and injecting it into my spine was the answer. The next issue was that I needed to wait until Wednesday for the cryoscopic x-ray machine to be available along with the doctor who could free up 15 minutes of his assigned time that morning.

The nightmare continued as I was still in ER, granted that by then I was in a quieter area. I was delirious at times and needed a blood transfusion. Late Tuesday I got a bed and felt as though I had been moved to a 5-star hotel. Wednesday the blood patch was done in a sterile mini OR and within 10 minutes the injected blood into my spine found the leak and sealed it~~voila, the headache was gone along with the nausea. So, another hospital story~~many thousands of dollars spent keeping me in ER 3 nights and then another 2 nights in a private room for a 15 minute procedure. I have been hospitalized many times over the years but never felt so hopeless and ill. 


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