Patient Advocate Sandee: “We all need advocates to help us speak our truths”

Editor:  Not Putting on a Shirt believes that women shouldn’t have to take extraordinary measures to ensure that their choice to go flat is respected. Unfortunately, we live in a world where paternalism is still endemic. Sandee’s patients in Qatar are lucky to have someone knowledgeable and bold acting on their behalf to protect them, but so many women don’t have anyone in their corner when making their reconstructive decision.  That’s why we are here – working towards a future where the choice to go flat is treated with the same dignity and respect that is afforded to the choice to reconstruct. We have a long ways to go. In the meantime, it’s good to know that patient advocates like Sandee are speaking out to protect patients.  Patients facing mastectomy in the US can usually find a nurse navigator or oncology social worker to help them advocate for themselves, but they often have to actively seek them out.


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Dragon boating helped Sandee to find her voice as a patient advocate after cancer.

“We all need advocates to help us speak our truths when we feel broken into bits. It can be hard to demand our rights when we are afraid and it can be hard to stick to what we want when we feel bullied by what others want. Surgeons have no right to tell us what to do based on their definition of beauty.” – Sandee

 

 

 

 

“Greetings from Doha (Qatar),

My experience as a patient advocate started because there aren’t really any support groups in Qatar for survivors yet. When I first arrived in Qatar 6 years ago, I was a two-year breast cancer survivor. I wanted to volunteer somehow but all I could do was staff a table at our college’s quilt ticket sales! It was frustrating. Then, the next year, a dragon boat was brought in to Qatar and although I wanted to start a team for breast cancer survivors, I couldn’t meet anyone! I decided to just paddle and leave the idea behind me.

Then I had a recurrence of breast cancer and everything fell into place. On November 14, 2014, I started a breast cancer dragon boat team. I also decided that since it was obvious that something had happened to me (going from a 34DDD to small implants), I might as well talk about it. I started writing articles, speaking at events and organized a survivors speakers panel. Then, my implants became a health hazard and caused a lot of infections and holes in my skin etc. so I finally had them removed. It was a hard decision for me because I had fought so hard to have the implants. Anyhow, I decided to go flat, gave myself three days to mourn the loss of my breasts and implants and got on with it.  I looked for an online support group. ‘Flat and Fabulous’ became my online home.

Not being one to remain silent, I started to advocate for women to be allowed to make their own choices… implants, no implants… do whatever. The local hospital started sending women my way who needed support or who were sad and in need of help. Two women I met wanted to go flat but had to fight their doctors or partners. The first woman was already small and didn’t want to bother. Her husband and her surgeon tried to convince her otherwise. I went to her home, chatted, showed her my scarred chest and said “do whatever will make YOU happy. It is your body.” She decided to go flat and never looked back.

The next woman had a surgeon I was unfamiliar with. This female doctor and her resident even made this woman wait another two weeks for surgery because they wanted her to contemplate her decision further! The nurse called me and asked me to speak to her… not sure what they thought I would say, given how many issues I had with implants, but I said, “go flat!”

I advised her to take a photo of my flat chest, sent her a picture and told her to get her surgeon to put in writing that she would agree to make her flat or she would go to a different hospital. I offered to go with her if she wanted an advocate or to practice what she would say. Like many of us, she didn’t want to disappoint or ‘backtalk’ her surgeon but she knew what she wanted! She wanted to go flat! And so, she went into her meeting, told them they must do what she asked for and then I sent her messages and pep talks until an hour before her surgery.

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The dragon boat team is strong because they work together.

We all need advocates to help us speak our truths when we feel broken into bits. It can be hard to demand our rights when we are afraid and it can be hard to stick to what we want when we feel bullied by what others want. Surgeons have no right to tell us what to do based on their definition of beauty. They are not the ones who have to deal with cellulitis, discomfort, multiple surgeries etc. We need to be told all of our options… the pros and the cons. It was MY choice to go for implants and then it was my choice to have my implants removed. No one tried to convince me of anything. Occasionally my surgeon mentions some new prosthetic but he only gets one or two sentences in before I say “I’m not interested. I am flat and fine with it. I am not interested in putting my breasts in and out of my shirt every day.” He gets that… and he no longer suggests anything.

So, advice for women who want to go flat. Take photos of flat-chested women, bring them to your appointment and say “This is what I want.” Arm yourself with pictures of fabulously flat women and bring them to the appointment with whomever you are supporting and if the surgeon does not agree, find another! Sometimes easier said than done but it is better than having to go back in for revision surgery or to wake up with excess skin left behind because they didn’t believe you when you said “flat!”

And remember… Your body, your right to choose!

Love and light,

Sandee”


 

Published by Not Putting on a Shirt

Founder of Not Putting on a Shirt, a mastectomy patients' rights organization that advocates for optimal surgical outcomes for patients going flat.

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