1. < Brain Tumor

High grade glioma: waiting for remainder of molecular testing

Posted by raphaela2025 @raphaela2025, May 2 2:57pm

It hasn't hit me yet. Just found out. I don't know what to do everyday. I'm not working. I can't drive anymore. Thank you for having me in your group.

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raphaela2025 | @raphaela2025 | May 28 3:27pm
In reply to @dbcondrey "sometimes its a small world. isn't re commonality with dialysis. yes social workers are mandated by..." + (show)
@dbcondrey

sometimes its a small world. isn't re commonality with dialysis. yes social workers are mandated by medicare to be in all clinics, i worked at fresenius for the first ten years of my career. Then that clinic was bought out by a small group which later sold it out to Davita, but i opted to leave to go to American Renal clinic which was previously owned by FMC. I worked in Rhode Island a small state but with alot of dialysis clinics, however, i preferred the medical practice associated with ARA, so i returned to my roots so to speak. From the way you describe yourself, it sounds as if you are from out of the country is that true, I am glad you are choosing Mayo, you will access to support services, through their team, altho its tough to be away from family especially for transport to appts etc. Interesting that a neurologist has an interest in neprology. well good luck with everything

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I meant to write nephrologist. Yes, I'm originally from South Africa, but I lived in the US a long time.

Thanks so much!

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dbcondrey | @dbcondrey | May 28 6:48pm
In reply to @raphaela2025 "I meant to write nephrologist. Yes, I'm originally from South Africa, but I lived in the..." + (show)
@raphaela2025

I meant to write nephrologist. Yes, I'm originally from South Africa, but I lived in the US a long time.

Thanks so much!

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oh it did throw me but i didn't want to contradict you. Well good luck and definitely seek out resources that the clinic has, you may have to advocate for yourself, as now a days, the professional's caseloads are high and spread thin, but it is a service ( ie social work, pharmacy, dietician) that I am sure Mayo has a collaborative team approach. That has been my major source of support here at Baptist Hospital in Kentucky. I think anyone who sees a specialist for such a serious disease should avail themselves of those services, because its not just about the biology /anatomy of the tumor, but your body and mind in other areas. I find with electronic medical records, my team is so responsive, i rarely wait more than a day for their responses. most time within hours i hear from them. Good Luck, make to ask questions about their team , what they have to offer, think of it like 'purchasing' a service, you are the customer and entitled to know what they can do for you.

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randallshields56 randy Shields | @randallshields56 | 5 days ago
In reply to @raphaela2025 "Hi Colleen, University of Michigan Hospital was a bust. I have an appt at Mayo--Rochester location--on..." + (show)
@raphaela2025

Hi Colleen,

University of Michigan Hospital was a bust. I have an appt at Mayo--Rochester location--on June 12. I am on the waitlist.

The headaches are getting worse, so I started Dexamethasone today. My primar issue at the moment is just getting out of the house because I can't stop thinking about the tumor.

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Getting out of the house is very important. Next is finding a friend to talk to. Takes your time to help fade out the problems just enough to enjoy some of your days or hours, or minutes.

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raphaela2025 | @raphaela2025 | 2 days ago

I just got out of the house two days in a row. It was for a haircut and color. I showed her a picture of me, which showed blonde. I left with dark copper, and interestingly I had a talk with her about not wanting to get red. So, then today I went back to the salon, she had been fired and the owner hadn't even seen my hair, so I have to go back tomorrow. I walked for the first time because I walked to different errands. Yay me!

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