Feeling in limbo

[Janeerp]

Had all my treatment dates through starting next Tuesday, but had a phone call from the Consultant yesterday to say that my genetic mutation test hadn't come through yet. If it isn't through by Friday all the dates will be pushed back to next month. My head knows that is fine but I find I am really struggling to come to terms with having no say or control. Telling myself to chill but need to listen 😆

[Spark_Plug]

Perfectly understandable, you were ready to commit and then they gave you the stutter step.

Same thing used to happen to me when I was about to pull some stunt. I'd get the rush of adrenalin, get stopped and then I was out of sync with myself I hadn't been moving when my brain launched.

When it is physical we understand it intuitively, but when it comes to being ready to commit to a course of action, and we know there is an amount of uncertainty in the outcome, we don't physically feel it so we can become confused emotionally.

Rest up, picture everything you plan to do, but then tell yourself, I'll be ready when it is time. Practice it once a day, you'll feel less anxiety through anticipation de-sensitization.

🙂

[Janeerp in reply to Spark_Plug]

Thank you for your understanding - you got it just right and I will practice 🧡

[Myvi]

Janeerp This is always so unsettling.as they might have said it was 6months away .to match how you felt.

The same happened to me.

They only have you health safety as the main concern so like someone told me --

There will be lots of moments like this if blood results are not as they should be or as you said delayed. So expect this to happen rather than dissmiss it .

I certainly would not like the Consultant decisions .

Juggling safe health for so many of us each an individual some already taking numerous medications .Matching up Chemo and Target treatments to work along side that to treat us safely .

It is amazing.

But they do and we'll done to them .

[Janeerp in reply to Myvi]

🧡

[Skyshark]

Are you having a short duration treatment Venetoclax+Obinutuzumab or Venetoclax+Ibrutinib?

My bone marrow NGS took a bit over a month but it was over Xmas and New Year.

Date of sample 22rd Dec 22, receipt at lab, 23 Dec22, report 4th Feb 23.

Flow cytometry report for same sample was 9th Jan 23.

A lymph node biopsy report took longer as they sent it for a 2nd opinion due to positive Hans Algorithm result but no DLBCL found. Date of biopsy 19th Dec 22, report typed 20th Feb 23. I was informed late January that there was a delay in obtaining the results.

[Janeerp in reply to Skyshark]

Venetoclax+Obinutuzumab. I know they struggle as it was not the first delay, including a biopsy like you that took two months to report on. It's not as if it is urgent but the waiting to hear is harder than I expected. Glad your result was good.