a man dressed like Uncle Sam, standing on a platform with a microphone in one hand and a mega phone in the other and with posters of bladders, cancer ribbons, and stars behind him

Shared Experiences

I wish I had a platform to speak to newly diagnosed cancer fighters. A huge bull horn with a shoulder strap and a microphone. Maybe stilts with the Uncle Sam clothes and the tall stovepipe hat. Yes, I wish I had such a platform.

I would share what I wish I had known

I would share so many things I wish I had known. I would step down from my stilts and change into comfy sweats and a hoodie. We would sit on an overstuffed couch with cups of warm, soothing tea, and I would give them a scrapbook of cancer wisdom. Each page would have notes and pictures and credits for the people who have supplied the lessons contained therein.

Sharing tears and fears

This is how knowledge should be passed on. Not in some dry textbook fashion, but one on one with hand-holding and hugs. Tears should be shed together, not alone. Fears are halved when shared and doubled when hidden. Perhaps someone could design an app to place survivor guides with newly recruited fighters.

In 12-step programs, people have sponsors. A person that can be called for support and insight. Someone who is walking the same sort of path. Someone who knows where the tripping hazards are and can offer suggestions to avoid or minimize them.

My survival guide

Not having that platform, yet, I humbly offer the following. Please use it as you feel comfortable. This is not a one-size-fits-all; it is a buffet to be taken as you like.

Cry

(Men, cut lots of onions to mask your tears as needed.) Seriously, cry. I am not talking a brief sniffle or a single tear, I am talking about what my daughter calls "ugly crying". Just let go and allow your fear, anxiety, anger and whatever else is bottled up to flow out. Repeat as often as needed to keep emotions at a manageable level.

Connect

A single twig is easily broken; however, a bundle of twigs bound together has great strength. Reach out. There are support groups and social media pages. The waiting room at your doctor is often filled with people in similar circumstances. I was in my urologist’s waiting room, and a man sat near and whispered, “Can I ask a question?” He was worried about the embarrassment of having a nurse see him during his scope. It was a guy “locker room” fear thing. I was able to assure him he would be fine and that the staff was wonderful. I saw him a year later and he thanked me. So, reach out and connect with others. You may find out that many of your concerns are universal and sharing them sheds light and dispels anxiety.

Read

Dr. Google” is a term I see in many of the articles here, and he is universally demonic. The irony is that anything you look up leads to cancer, and since we are already past that hurdle, we can research with less fear…maybe. I would recommend reading books and articles that can offer help and insight into your particular situation. Not necessarily cancer books alone. Book on wellness and health. Articles on fear and anxiety. Whatever you choose that can make this week easier and less overwhelming.

I get immense support from the words of fellow bladder cancer survivors. Their experiences are a welcome reminder that I am not alone and my struggles are shared with many.

Move

In whatever fashion and to whatever level you are able, move. Physical movement is good for the spirit. This may be challenging at different points of treatment or times of limiting illness. Don’t beat yourself up. Do what you can, where you are and accept the joys, without regard to the size of said joys that you can receive.

I am sure there are many, many more suggestions and tips and connecting here and with others will allow us to find and share them. For now, be your personal best and find happiness in that.

Best wishes.

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