June 1, 2020

I was going to write a cheerful post because something miraculous happened today. My appetite came back for the first time in months and I ate a McDonald’s double cheeseburger. It was the most delicious thing I have ever tasted in my life.

But things are different now. I received an email from a nurse responding to the email I sent to my primary care physician over the weekend requesting a pain management plan. She said how sorry she was to hear that I am in pain and will forward the email to the doctor for my phone appointment with him on Wednesday.

“Sorry”? How about helping me now? And why is she answering? I sent the email to him.

Then, I received the prescription for iron pills (remember the one my doctor forgot to tell me he issued?) and took my first pill.

Then, I contacted the office for the sigmoidoscopy (which I had successfully pushed to be moved up from 6/15 to 6/4) because I never received any instructions for the procedure and wanted to know if I had to stop eating, etc. I should not have had to expend energy wondering if I there were instructions or call to get them – I’m the sick person. The hospital was responsible for sending them out and didn’t.

So the nurse emailed me the sigmoidoscopy instructions. I read them. It says you cannot take iron pills five days prior to the procedure.

My “doctor”, who prescribed the iron pills and knew I was scheduled for the sigmoidoscopy, never told me not to take the pills because I was having the sigmoidoscopy. And the sigmoidoscopy people never emailed or mailed me the instructions.

I am really worried. Mistakes are being made.

From a broader perspective, I have not been given any information whatsoever – none – about what it all means. “You have cancer.” “It’s here, here and here.” What does that mean for me? I understand that an oncologist cannot discuss a specific treatment plan with me until after the biopsy but, if they would let me speak to an oncologist, at least I would have someone of whom I could ask questions. Right now, it’s just me and my imagination – and the internet and TV shows about cancer.

This is so wrong. How do you tell a person they have a large, invasive, cancerous tumor that has spread and then let them sit for weeks without letting them ask any questions of a specialist? Who devised this system? Is no one considering the patient’s perspective? Wrong, wrong, wrong. And when I have asked to speak to an oncologist I am treated like a child and explained in slow-motion why they need the biopsy first. I understood that the first time I was told. But they don’t understand what it’s like to sit quietly with this horrendous diagnosis and wait and wait and wait.

Last week, my primary care guy said “Well, your biopsy is in four days” like it was nothing and I’m just being a pain. (And at that time it wasn’t four days – it was 6 days away). Well, until today’s hamburger, I’ve averaged just a few hundred calories a day. Four days is a lifetime in terms of the extent to which I’ll be diminished physically by then.

Now I just received an email stating the sigmoidoscopy can go forward despite the iron pill and despite the written instructions.

Is this all normal for “medical care”? Because I can tell you it’s exhausting.

Now I’d like another hamburger – that’s a good sign!!! But why is this happening – can’t keep anything down for weeks and suddenly can eat. It would sure be great to have a doctor to ask.

Love, Molly2923

2 thoughts on “June 1, 2020

  1. *Hugs* I wish you had a better PCP. If the pain gets really bad, bite the bullet and go to the ER. Once you get into oncology, palliative care will become your best friend, but for now it sounds like you’re stuck between your PCP and the ER and frankly I’d trust the ER. If you have to go, wear a mask and take hand sanitizer.

    Like

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