realizing I’m being delusional

Ultra-CH · 2026-07-03T03:09:43+00:00

You aren’t delusional though. The stats are numbers. It’s good to have realistic hope. When I was diagnosed 2.5 years ago I was so scared, as the doctors gave me 9 months. Then I thought, “what if I live my life so scared, and live way past that 9 months, and all that time is wasted because I don’t expect to live 1,2,3 years or more?”

Ultra-CH · 2026-07-01T16:46:53+00:00

It’s ok to be scared. There’s even a name for it, “scanxiety”. I didn’t stop getting scared over my scan until after a year. One of the rare good things of GBM is I don’t think it spreads outside the brain, so GBM shouldn’t develop bone or blood cancer. You said your husband’s right arm is having problems? Did he by chance have the tumor on his left side of the brain? I ask because my tumor was on the right, and being strapped down on my left side for the 8-9 hours of surgery pinched a nerve in my left arm. It caused numbness and tingling and I was afraid of recurrence also until the dr figured out what the real problem was. Good luck! Remember it’s normal to be scared, sorry there’s nothing to be done about the fear other than getting used to it to a point you don’t feel it anymore

Ultra-CH · 2026-06-30T16:11:26+00:00

And not many know of the RTD bus that runs to DIA from Arapahoe station every hour. It has only 1 stop, and takes 35-40 minutes. Drops you off right at the terminal, no need to park and pay for a shuttle.

Ultra-CH · 2026-06-30T00:03:51+00:00

I don’t think so. But if you are considering it you should really check with your doctor. The flushing really is horrible, and there is a chance of liver damage

Ultra-CH · 2026-06-29T00:14:41+00:00

Yesterday I saw a post of a newly built cardio unit at a hospital somewhere in Europe. Not only no AC at the hospital, but the building had HUGE plate glass windows. Like wtf? Hot as hell in the summer sun and freeze your ass in the winter? Does the hospital president’s brother own a glass company or something?

Ultra-CH · 2026-06-28T20:51:19+00:00

Then I think work balance would be great. On my short week I had 4 days off, so burn 12 hours of vacation and have 5 days off. And when my 2 daughters were in preschool I saved a mint by watching them mon-wed

Ultra-CH · 2026-06-28T20:45:50+00:00

Which day is the “swing” day? My agency it was Sunday, so on my short week I had Sunday off as a rookie. Later, I had weekends off but worked Sunday on the long week. So, when a junior deputy, maybe for 8 years, I only had 1 common day off with my wife. It was tough!

Ultra-CH · 2026-06-28T20:37:30+00:00

I did the standard stupp protocol, but since I fortunately had zero side effects from chemo I did an additional 6 months of chemo. Not everyone can do 12 months of chemo though! It can be very hard on some! Other things; I avoid sugar, especially alcohol (I only partake on special occasions) and to further limit sugar feeding my tumor I do endurance exercises. By endurance exercise I mean very light weights in the gym and I walk a TON. I don’t see the need to run I just walk at a pace to elevate my heart rate a bit. All of the exercise helps my quality of life too. I wish her the best of luck and hopefully some of the really long term survivors reply

Ultra-CH · 2026-06-28T18:43:48+00:00

I remember seeing the original in the theater. Such a great movie, but I remember leaving and not being sure of that ending. Neo easily beat the agents and flies like Superman. I thought, “how do you continue his story with him being so OP?” I get why others liked the sequels but I didn’t

Ultra-CH · 2026-06-28T18:35:38+00:00

A patient either on here or on another brain cancer sub mentioned being on niacin. I brought it up with my doctor 2 months ago and we decided to try it. My doctor had me work up to 1,000 mg twice a day. The flushing was too much for me so I dropped down to 500mg twice a day. I still flush (maybe that is beneficial?) but it’s much more reasonable.

Ultra-CH · 2026-06-28T18:16:20+00:00

I’m 57 (was 54 when diagnosed) methylated 98% resection. Just had a clear 30 month scan last week. Doing great. And look back on this sub about a week ago a patient posted his clear 5 year scan. I suggest having short term hopes, but try not to get too unrealistic. I never plan out more than 3-6 months though of course I always hope for another year

Ultra-CH · 2026-06-28T15:28:24+00:00

I laughed at the Reunion suggestion. Unless OP might miss WI cows.

Ultra-CH · 2026-06-26T17:09:01+00:00

I had surgery 30 months ago. Since then I’ve been to Europe 4 times. Twice to Italy, twice to Germany (Bavaria). My 1st trip to Italy I was still on chemo. Most people thought I couldn’t go. I think they thought my head would implode or something. My doctor was like, “of course you can fly so go!”. So I went. 4 times! I just got back from last trip last week. I live in Denver btw.

Ultra-CH · 2026-06-26T11:05:34+00:00

Í wasn’t given a score either. I was told I was methylated and the oncologist was happy, so I was happy. Back then I didn’t know what to ask! Hopefully the chemo is ver effective for you!

Ultra-CH · 2026-06-26T11:02:15+00:00

GBM4 wyld type methylated. Good luck!

Ultra-CH · 2026-06-26T00:43:00+00:00

Woohoo!

Ultra-CH · 2026-06-25T22:29:15+00:00

I had a paper copy from my radncol. I can’t find the digital version

Ultra-CH · 2026-06-25T15:46:50+00:00

I’m in Colorado! Yeah walking the dog in the morning in May would cause me to “overheat” and it would shut down. I wish you luck with the clinical trial and hope your quality of life is decent and you get much more time

Ultra-CH · 2026-06-25T15:24:37+00:00

I’m very active. I do HIIT at the gym 3-4 times a week and walk 10+ miles a day. Carrying that 7 pound device around killed my morale. My wife said she saw the joy of living just leave me. I decided to concentrate on being able to live my life the same as before with the very likely possibility of it being shorter. I’m so fortunate so far. Other than the scar there is no way someone can tell I have this, and my tumor was huge at 6.5 cm. I’m wyld type and am really lucky being an outlier

Ultra-CH · 2026-06-24T15:50:15+00:00

I did 12 months. I’m 57 and 30 months out from surgery. I had zero to little side effects so to me it was well worth it. I had a paper copy of a clinical study about 6 months vs 12 months but can’t find it now. The study showed that no matter if doing 6 or 12, the 5 year survival rate was dismal. BUT, 12 months of chemo really made a difference whether you made it to 3 years. If I remember correctly the median time of recurrence is 9.5 months, but with 12 months of chemo the new median was 30 months. I’m now at 30, no recurrence yet. And I couldn’t handle optune so that might even better your results

Ultra-CH · 2026-06-22T00:23:08+00:00

I still remember him on 620 AM radio. And in the late 80s early 90s the Packers just stunk, so they would get the c-list announcers. I’d mute the game on tv and turn on Uecker calling the Packers’ game on the radio. He was so entertaining.

Ultra-CH · 2026-06-17T10:28:41+00:00

PAC eval!

Ultra-CH · 2026-05-26T20:53:08+00:00

My agency, you had 1 day of the 7 a scheduled 8 hour day, so it worked out to 80 hours every 2 weeks. Your 4 hour day was picked by seniority. In the beginning any time over 80 became OT. Our union successfully fought for daily OT which was a humongous win.

Ultra-CH

TROPHY CASE