Hello June 2021, marks the 10-month anniversary of my Brain Tumor Zoom Support Groups (BTZSG). I have successfully hosted over 40 online sessions and personally feel stronger after each group. I thought I'd share some feedback from the attendees. Going forward, I will continue to post our "Brain Tumor Superhero" success stories. We can all benefit from the hope, positivity, tears, understanding, laughs, and support experienced in these sessions. Our community is small, our voices often silenced, and our fears and anxiety sadly fought alone. Connect with this amazing group of people, all so willing to share and offer comfort and understanding. This group really, "Gets it!" If you have yet to join a session, I hope to meet you soon! Happy mid-year, it's officially June already. - Angel |
|
|
Meningioma Sessions… A Must Do I was diagnosed with a left frontal lobe meningioma 3 years ago while undergoing testing for neuromuscular disease. An accidental finding, this news rocked my world immensely. Although I had symptoms for a few years prior, my primary care physician always said I had a thyroid problem. Finally, the on-call doctor for my PCP broke news about my meningioma and immediately referred me to a neurologist. Funny thing is I don’t have a thyroid problem! The neurologist did EEG’s, another MRI, referred several different specialists for further testing, but no one ever recommended a support group. |
|
|
It was Angel who contacted me through a Facebook group about a new support group that positively changed my life. Through these sessions, I felt happy to find a wonderful group of people that either were on watch and wait or had brain tumor surgery…what a relief to finally meet others that really “got it” and understood living life with a brain tumor. Meeting these amazing people, I no longer felt alone. Whenever I told others in my life about my diagnosis, I’d get treated differently afterward. Immediately, these sessions made me feel a part of something positive and amongst friendly people who openly discussed their tumors, treatment or watch and wait, and patiently listened to one another. Angel is an amazing and warm facilitator and is so genuine. I appreciate her listening openly. It’s almost like Angel has special powers…I’ve never seen her take notes but Angel kindly and genuinely remembers details shared in our sessions. She’s very engaging and gives each member an opportunity to speak and ask questions. Angel is a real natural facilitator and made a newbie like me feel warm and welcome. She’s very responsive and very resourceful and is more like a friend to each member besides being the group facilitator. The sessions feel more like talking to a group of friends around the kitchen table. Facebook or similar social media support groups can feel sterile and lack privacy, but with this group I feel trust and no judgment. What I find unique is this group really feels like a small community, even though members live throughout the U.S. or in other parts of the world like Australia, New Zealand, or Mexico. I did meet one member who doesn’t live too far from me and another member who grew up a mile away from where I live now…so besides having brain tumors, we have other connections. It’s great to see friendships developing amongst members. And, there are some really cool and unique jobs that members have so we chat about things besides shop talk. I highly recommend these sessions and encourage someone, whether newly diagnosed or it’s been a while since diagnosed or even after surgery, to join a session and see how wonderful and beneficial this group is. It’s well worth it and something you won’t want it to end once the session starts. I really like the staggered meeting times that accommodate busy schedules and different time zones. This group is a must do! And, don’t miss out on the opportunity to be connected to something beneficial! *Karen is from Northern Califronia, and has been a Zoom participant since January 2021. She has joined 6 sessions. |
|
|
Grateful! I am so grateful for this support group. When I was told that I had a brain tumor, I was devastated. I felt so scared and alone. I couldn’t find a place with people like me who could understand what I was going through. As soon as I learned of this group, I decided to give it a try and I am so happy that I did. I was welcomed with open arms. Everyone was so kind and really understood me. I have so many friends that I can laugh, cry and talk with. This has become my second family and I look forward to every session. They support me with whatever I am going through and never judge me. |
|
|
We have become such a close group of friends and are always excited to welcome anyone new, who is going through this journey. I can’t thank Angel enough for starting this incredible group. I encourage anyone who is hurting because of this diagnosis, to join this wonderful support group that really understands and cares about you. You will be so glad you did! *Deneen is from Baltimore, Maryland, and has been a Zoom participant since September 2020. She has joined 23 sessions! |
|
|
You Are Not Alone Good day, my name is Rodrigo Durán and like you, I am a survivor of a brain tumor (meningioma of the falx), diagnosed and removed in August 2017. My tumor was affecting the mobility of my left arm and leg, as it was compressing the motor cortex of the right parietal lobe of my brain. Surfing through the web and Facebook, I found and joined this support group for brain tumor survivors, and after receiving an invitation from our administrator, Angel, I decided to give myself the chance to participate in virtual meetings with other people from the group. |
|
|
So far, I have participated in 7 sessions in which I have met and forged great friendships with people who, despite living in different cities and countries and having different lifestyles, we feel close together by sharing the fact of suffering or have suffered a brain tumor. This made us realize that a person with a brain tumor is not alone, and besides support coming from our family circle or friends, we could get support and companionship from other tumor survivors. Personally, I can tell you that interacting, sharing, and listening to our daily situations, experiences, ups and downs, has helped me to strengthen my empathy and help the group by providing emotional support, listening and accompaniment, which is necessary on many occasions when talking about brain tumors. I strongly recommend you take the first step and enter this support group. We’ll be waiting for you with open arms and mind, in order to give the words and the support you need to hear. *Dr. Rod is from Guadalajara, Mexico, and has been a Zoom participant since December, 2020. He has joined 7 sessions! |
|
|
No Judgment Support Group Hi, my name is Kelsey, I am currently a 38-year-old female (turning 39 this fall). I found out I had a brain tumor in July 2019; surgery was scheduled for September 2019. Thankfully, I had a pilocytic astrocytoma (grade 1). I was devastated when I found out I had a brain tumor and scared. I got involved in some brain tumor support groups but eventually found one I loved which meets via Zoom each month. The group has helped me support others, meet other people that “understand” what I went through, and the frustrations I have now (positional vertigo that occurs only at night lying in bed, or on a rare occasion looking up or laying on my back). |
|
|
I am currently trying acupuncture which has helped a little, but the doctor thinks it is an “inner ear issue”. I refuse to see another doctor just for them to put me on more meds and put me through multiple tests. But the zoom group has helped me meet others that are going through some vertigo as well and it's nice just to complain to them about it without feeling judged or sounding crazy. I encourage ANYONE to join this group, even if you are someone that has another family member/or friend that has or had a brain tumor. You will love it. *Kelsey is from Fredrick, Maryland, and has been a Zoom participant since Sepetmber 2020. She has joined 8 sessions. |
|
|
Thank you: Karen, Deneen, Dr. Rod, and Kelsey for sharing your story and ongoing benefit from the BTZSG group. |
|
|
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. |
|
|
|
|
