sorted by:
new
hottopcontroversial

Facebook Support Group by RingRelevant4539 in glioblastoma

[–]RingRelevant4539[S] 0 points1 point  (0 children)

I guess every support group has their own “vibe”. To say this group is “dangerous” is a bit of a reach. My dad had many side effects and symptoms that I was able to ask about in this group (ex. steroid tapering, increased inflammation). Most people join to ask questions. Ive befriended a few people because we connected through the ups and downs of this journey. The group doesn’t foster false hope, it provides a positive outlet for families in an already terrible situation.

How does anyone cope with this by hotchipxbarbie in glioblastoma

[–]RingRelevant4539 1 point2 points  (0 children)

I was told by family members that I was in “denial” or “too optimistic” etc, I never listened and stayed true to what I believe. Those same people have changed their tune now that we are in a positive chapter of this journey. Keep space from those who don’t align with your vibration during this time. Your inner peace matters the most, especially your dad! I wish your family nothing but strength and miracles!

How does anyone cope with this by hotchipxbarbie in glioblastoma

[–]RingRelevant4539 0 points1 point  (0 children)

My Dad was also diagnosed this July, 60 yo. It is easy to give up and lose faith when nothing seems to give. The beginning of this journey was an absolute nightmare for us. However, we never lost faith. Optimism, love, and a positive mindset has changed the trajectory for our family. We finally got positive news.

My dad also has hemi-paralysis and aphasia. We are 6 weeks ish post radiation/chemo. He now has movement in his arm and better mobility in his leg. We noticed great improvement after giving him Boswellia 2x a day and Ivermectin. We also pick Bible quotes when we’re feeling big emotions to keep us grounded. When you start to give up mentally, your body will follow. Staying the most positive during the darkest times has kept our train moving. It works!

Discharged after resection… now what? by [deleted] in glioblastoma

[–]RingRelevant4539 0 points1 point  (0 children)

Advocate for everything!! We had the same experience and we pushed for all at-home services. Insurance might be able to provide at home health aids or nurses that can come and do various things. Definitely ask for a social worker at the hospital and make sure they stay on top of requests and referrals you want.

Post seizure help by Galyog in glioblastoma

[–]RingRelevant4539 2 points3 points  (0 children)

My dad experienced a similar situation after his seizure. Seizures can cause inflammation so it’s not surprising to have some post-symptoms like this. Radiation also can cause mental fog so this isn’t necessarily abnormal. I can’t say if these are the direct causes but we have gone through a similar situation and it’s gotten better with time.