Comments on: Hurry up and wait

By: Claire ATX

Claire ATX — Thu, 13 Oct 2022 11:30:58 +0000

I am reading the book, The Beekeeper of Aleppo. I think it is an excellent book about the disconnection and despair of Syrian refugees.

This sentence reminds me of how I feel sometimes in the health care system:

“But her error, however small, reminds me that she is human, that she has limitations, and this makes me afraid.”

By: Claire ATX

Claire ATX — Wed, 12 Oct 2022 15:23:47 +0000

In reply to Ragged Clown. When I was in therapy, there was a metaphor that seemed useful. The therapist said that the two of us were trying to find our way in the dark, meaning my childhood memories. The therapist hoped to hold the flashlight on my path so I could find my way. In other words, we were walking together, not one leading the other. That was how I felt about my nurse who had had cancer. We were walking together on my difficult path rather than she was leading me.

By: Danielle

Danielle — Tue, 11 Oct 2022 20:05:01 +0000

11 weeks to wait for biopsy results is just plain cruel!

By: Ragged Clown

Ragged Clown — Mon, 10 Oct 2022 18:52:04 +0000

In reply to Graham. There aren't any trials for my kind of glioma and I'm probably not gonna get treatment anyway. I just want to know what I have. Also, the oncologist won't take me without biopsy results. I like the oncologist. She listens.

By: Ragged Clown

Ragged Clown — Mon, 10 Oct 2022 18:49:57 +0000

In reply to Dianne Pagani. Waiting. Waiting. Waiting.

By: Graham

Graham — Mon, 10 Oct 2022 17:51:32 +0000

Kevin
We have a world-beating free health system, the envy of the world is what we are often told. The reality as you have been discovering is a system that overall is not fit for purpose. There are some excellent professionals but few if any are prepared to step up above the parapet to get action on basic problems of the system of care.
I hope you find an excellent professional who first listens to you and talks to you then as an equal and discusses. MDTs seem to be the exception rather than the rule. If run properly they seem to avoid the ego problem which is a recurring problem IMHO.
If there is a relevant clinical trial they seem to be useful as there is better monitoring and keeping to time-scales. There are Pros and Cons
Best wishes
Graham
Best wishes
Graham

By: Dianne Pagani

Dianne Pagani — Mon, 10 Oct 2022 17:49:21 +0000

I’ve been thinking of you and wondering…. Now I know you’re still waiting which is truly insane. Love to all.

By: Ragged Clown

Ragged Clown — Mon, 10 Oct 2022 15:03:05 +0000

In reply to Claire ATX.

I agree, Claire. The gulf between a doctor who will listen and a doctor who won’t is vast.

I’m hoping that a proper diagnosis will allow me to escape the world of the surgeon and enter the world of the oncologist.

At the very least I will be able to walk to the hospital with the oncology department instead of taking an hour bus ride to the hospital with the neurology department!

By: Claire ATX

Claire ATX — Mon, 10 Oct 2022 14:56:51 +0000

So many rabbit holes! Incomprehensible!

I don’t think professionals in the health care system completely understand unless they have also had a cancer diagnosis or other life-threatening illness. The first nurse I saw for my stem cell transplant had had breast cancer 20 years earlier. Too much radiation then was causing her esophagus to tighten now and other harsh side effects. She knew what it was like from the other side. She was a life-line for me in a very scary time.

The system has so many inadequacies. It seems blind to the patient’s perspective sometimes. The “we know best” attitude is infuriating. Okay, many times they do know best, but the attitude of superiority and maintaining superiority is maddening.

With some nurses and with one doctor, I felt like it would be best just to accept that they see me as a body mostly. I changed doctors when this happened.

This emotional ordeal with a life-threatening diagnosis is unconscionable. My heart is with you.