Support you never knew you needed until you try!

Support you never knew you needed until you try!

Hello ,
 
As our community grows, our Brain Tumor Zoom Support Groups (BTZSG) have proven to be beneficial for so many. With each session, we have the unique opportunity to meet new people from all around the world, visit with those we have come to know, and share our story candidly all while offering healing support and understanding to one another. I can't rave about the BTZSG's enough, it was truly what I needed all along. In this newsletter, I share with you some member testimonials. Possibly this is the support you always needed but never took a chance on. Hope to hang with you on a future group. 
 
Wishing you a healthy and happy July!
- Angel

So Glad I Had The Courage To Sign Up!
I don’t know what I would’ve done without this group. When Angel asked me if I wanted to join a zoom support group meeting, I said yes but was a little nervous because I never had much success with group sessions in the past. I am so glad I had the courage to join my first meeting, I have never felt judged, only completely welcomed and loved. I have a group of new friends that I look forward to seeing and talking to. Every time I experience something or have a bad day or a good day the first people I want to tell (after my husband) is this group. I am so thankful to Angel and everyone in this group. 

*Brenda is from Tucson Arizona, and has been a Zoom participant since November 2020.
She has joined 20 sessions. 

Don't Fall Through The Cracks!
My journey began in the Fall of 2018 with symptoms of facial numbness, hearing loss, tongue and throat numbness. I was diagnosed with a meningioma on my brain stem. I underwent a craniotomy in July 2019.  Although the tumor was successfully removed I was left with double vision, severe headaches, loss of taste and the frequent smell of something burning. My vision returned 3 months later, but I still felt off. I reached out to my Neurologist, my General Practitioner, as well as, Mental Health. It was the same story, that I was early days from surgery and what I'm experiencing was normal.

In February of 2020, I ended up in a mental hospital because I had taken 9-10 Ativan. For 3 days prior, my texting was indecipherable, my speech was off and I had no memory of my actions. Although waking up in the hospital was a shock, it was the best place for me. Finally, I had a doctor take time to listen to me and he mentioned focal seizures and started me on Gabapentin. Within 24 hours I felt the fog lift and it was wonderful. Once released I had an EEG that showed seizure activity and my Neuro put me on Keppra. A few months later I did another EEG and again, seizure activity, so the Keppra was increased and I feel better now than I have for a long time. It was a rough time getting past the anger of not being heard and that nearly cost me my life. With time, that anger is going away and I’ve moved on and accepted that this journey is difficult at best. 
 
In May of 2020, I began a virtual group for people with memory loss. All members had experienced memory loss and deficits from a variety of issues, but only one with a brain tumor.  The group left me feeling like I needed more; that I wanted to connect with people on the same journey as I. When Angel asked if I would be interested in a virtual group for brain tumor patients, I was thrilled! Finally, I connected to people that get me and understand all the stages and emotions that come with our diagnosis. It has been such a huge part of my recovery to be able to talk freely about my experience. I no longer feel so overwhelmingly isolated and misunderstood.  
 
My experience exemplifies how brain tumor patients fall through the cracks; that a mental health professional is critical to recovery. I’ve often wondered how many before me died from an overdose because no one bothered to check them for seizures. 
 
The Brain Tumor Zoom Support Group is a unique group. Angel has provided a platform where you can listen to others share their journey and when we share, we learn and we begin to heal.  
 
I share my story in hope that it helps others.
 
*Lisa is from Tracy, California, and has been a Zoom participant since September 2020. She has joined 20 sessions.

Facebook Groups Are Not Enough!
Hi my name is Gail, I live in Northern Ireland, UK. I was diagnosed with a 6cm meningioma in September 2019 after having to pay privately to get diagnosed as our health service in the UK is under big pressure. Had my first surgery in January 2020, I had a stroke during surgery and was also left with one eyelid completely closed. I also caught meningitis but thankfully I’m still here. My second surgery was June 2020, I had 28 radiotherapy treatments in December 2020 so 2020 was an eventful year for my family and I. I’ve been told with my last mri that everything has gone as they expected it to and that I’m stable. I started having zoom chats with Angel and everyone else and I have to say it’s been a big help to talk to people who understand. I type messages to people who are on Facebook but it’s not the same as talking about it. I think talking helps more and everyone is so friendly it’s definitely worth a try to talk about it.

*Gail is from Northern Ireland and has been a Zoom participant since January 2020. She has joined 4 sessions.

Thank you: Brenda, Lisa, & Gail for sharing your story & trusting the BTZSG process. You are all doing great!

Lisa alerted us all to a show on Netfix called Lenox Hill. Gain insight on what the lives of four doctors looks like as they navigate the highs and lows of working at Lenox Hill Hospital in New York City. For many of us, our Superhero wears a white coat!

JOIN A BTZSG IN JULY!Your 1st session is FREE. There is a FREE group every month. Connecting with your peers is just one click away

The information provided in this newsletter is not to be perceived as medical advice, simply information that is shared by brain tumor peers. Meningioma Companion is not contracted or paid to promote any of the people, companies, or groups that are shared on this platform. To unsubscribe from Meningioma Companions monthly newsletter reply STOP to this email and if willing please share why you decided to leave. 