May 30, 2020

I am in serious pain now – in the morning – for the first time. It’s coming from my kidney. The pain was so excruciating last night that I couldn’t take it and I am very tough when it comes to pain. I was crawling on the ground just to get to the toilet to throw up. So I called the oncologist whom I want to be my doctor. I had him paged.

I know that I was not following protocol but I do not trust my primary care physician and I don’t know where to turn. The oncologist was wonderful. Really wonderful. His first question was “What’s your pain management plan?” I don’t have one! No one has mentioned a pain management plan to me even though I have told them all about the terrible, terrible pain that I’ve been suffering for months. He said that my primary care physician could prescribe for me or I could go into the emergency room. He explained in detail what would happen in the emergency room and made me feel very safe.

I didn’t call the oncologist for pain medication. I called him to let someone know what was happening and try to get help. He explained why he couldn’t see me until after the sigmoidoscopy (which I knew) and he gave me an oncological perspective about my situation which I have been missing. He was serious and straight-forward and patient. He was what a doctor should be.

I sent an email to my primary care physician this morning letting him know that I had reached out to the oncologist (I know – he won’t be too happy about that – tough) and that I want a pain management plan and one which does not involve an addictive substance. It’s afternoon; I’m suffering; and I haven’t heard a word back. Horrible.

I’m thinking about going to the ER if he doesn’t get back to me. The oncologist said I would likely be admitted and given something intravenously given my condition. I have avoided the ER/hospital due to COVID and don’t want to cave now just because of pain. But it is really hard to bear.

One other thing – no one is asking me about my weight. I will not get on the scale now because it is just too disturbing. I can barely eat and I am losing pounds. I am emaciated. Isn’t that important for the doctors to know? Can they help me?

I am out here swinging in the wind …

My mother just reminded me that it’s Saturday. Pain does not stop on the weekends. Don’t doctors check their messages and write prescriptions on the weekend? I need help. The most frightening thing about this is that I was relatively stable (bad but stable – the same awfulness everyday) in March and April but now in May I am deteriorating daily.

I have never taken pain medication except for Advil a couple of times a year and when I had two surgeries as a young woman. After the first surgery, I refused the pain medication because I was told it could make me nauseous and I had staples in my abdomen and was terrified of getting nauseous and having to throw up. I lasted 22 hours and then accepted the medication in the hospital (they kept you in the hospital for several days back then). I took it in the hospital after the second surgery but not at home after I was discharged. So when I say I’m ready for pain medication and need it, it’s serious.

I guess I have to wait to Monday … My mother called the ER and the nurse told her that they are separating COVID and non-COVID patients but everyone is grouped together upon arrival before being split up. So I can’t go there.

I can’t imagine what tonight is going to be like.

We are sorting through my belongings and dumping beautiful things I’ve been carrying around for years and not using. They’re going to Goodwill. I can only do a little at a time, mostly directing my mother. I don’t feel sad about any of it. I am keeping only treasured items. My mother wants them too in case anything happens to me so I’ll still be around in spirit. I just wish I were stronger and could get it all done right away. We need to move forward.

Love, Molly2923

Postscript: My attitude towards this cancer has changed. I had sort of accepted it as a fact that had to be dealt with and I wasn’t sure how I would handle chemo, etc. Now I know that the cancer is not just a tumor waiting to be surgically removed. It has invaded, surrounded, engulfed my organs. I can feel it by the pain and I know it from the scans. It is taking over my body. So now I feel that I’m at war. And I want to kill it. It has made a home inside me, literally eating me up alive, and I want to kill it.

One thought on “May 30, 2020

  1. Good attitude! Kill it! I would also get used to going to an ER when you have trouble. Once you start treatment and have problems outside normal doctor hours, on call oncologists will usually send you to the ER. Urgent care clinics aren’t equipped to deal with cancer patients.

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