Brain Tumor Support Groups

Finding out about Brain tumor support groups

Support – keep from falling

You are not alone. I physically and emotionally felt this as I sat in a circle with 30 other brain tumor survivors at one of the brain tumor support groups I attended for the first time in person this week.

A friend of mine, diagnosed with a brain tumor herself, had been wanting to attend this support group but did not want to go alone. Having been part of an online support group since my brain tumor diagnosis in 2010, I knew the importance of a support group, right from the very beginning. Support through the shock of a serious illness or disease diagnosis is critical.

We often tell ourselves that everything is going to be ok and try to remain positive. I, myself, am a firm believer in the power of being positive. However, when you are blind-sided by such a diagnosis, the turbulence of the emotions that goes on inside your mind can be overwhelming. The unanswered questions, the uncertainty, the inundation of information. It is often all too much. There can also be a form of grief that one goes through as you are confronted with your own mortality, depending on the diagnosis you have received.

Family, friends, loved ones are our pillars of strength- the ones that can give us the hugs and gentle silences we need, the smiles and laughter to pull us through. But, we also need the footsteps of others, who have walked the road we are about to walk on, to follow. The guidance, the advice, the sense of humor about the bizarre happenings, the positive stories that can direct and help us see the way forward. This is the role of support groups – helping us chart and navigate the step-by-step.

Families, friends, support groups and us together is the most powerful combination in the journey of any disease, illness or condition.

Attending a support group should be seen as a sign of strength, and never of weakness. The ability for individuals to walk into a room and connect with strangers about their lives, condition, feelings, fears and triumphs – can only be seen as a strength of character.

Five years after my diagnosis, I still connect with my brain tumor support group online on a weekly basis and continue to learn. They have been instrumental in my recovery, have been there for me through the ups and downs, I have been a quiet observer and a vocal contributor. I hope that I support others going through their journeys as much as I have received support through mine.

This week, even five years out from diagnosis and three years post –op, the learning’s from my group visit were profound.

– You are not alone. Just look around you. You will be surprised to learn about the person next to you and their journey – don’t be afraid to connect.

– I love and respect my brain more than anything for what it does for me, has been through and continues to amaze me with!

– Seize the moment – don’t wait for retirement to do something. – it may be too late. Embrace life today!

– Reach out! You will be amazed by reaching out to a friend, colleague or health care provider as to what you can find. I found a wealth of information just in that room – just in one hour. I consider myself very proactive yet still found more resources to tap into – through people – human beings and not just the Internet. Connecting with people is so important for the soul when you are confronted with a diagnosis that could impact your life dramatically.

So, a gentle reminder to myself and anyone else who may be reading this, if you have ever thought about getting support for anything in your life, reach out, connect and do it now…I think you will be greatly surprised and wish you had done it earlier.