Despite receiving a mammogram the year before, Aiysha Sinclair was diagnosed with stage IV breast cancer in 2022. In her family, a cancer diagnosis was seen as taboo, with other family members being pressured to keep their diagnosis a secret. Read on to discover why Aiysha decided to speak up and why she believes more representation and outreach is needed in the Black community and in the Caribbean community.
Our Baddie x 2 series is an intimate moment in time grasping the interaction between two baddies as they discuss being diagnosed, survivorship, and everything that comes in between. We hope that you enjoy this series and that it sparks a dialogue amongst the breast cancer community.
Interview with breast cancer survivor, Aiysha Sinclair, as told to Baddie Ambassador, Keneene Lewis
When we put it out on social media that a new series was to be featured on the FTBOU platform called Baddie x 2: Growth through Conversations, we received a lot of responses from women who wanted to share their stories. We invited women from the breast cancer community to join me on a call. I explained that the purpose of creating this series is that I wanted to honor our unknown bonds while building a sisterhood through compassionate discussions about our lives. The thing that continues to connect us is that we were all diagnosed with breast cancer at some point in our lives and we are all WOC. Thankfully, Aiysha was happy to connect.
In the 13th installment of our amazing series, Baddie x 2: Growth through Conversations, I was able to catch up with this amazing Baddie, Aiysha Sinclair
Q&A Aiysha Sinclair
Hey Sis! Thank you for your time and the willingness to share your experience. How did you
hear about For The Breast Of Us (FTBOU)?
Google and LBBC mailing list. I was trying to find some sort of support group.
How has FTBOU supported you?
A lot of the FTBOU social media posts have been very encouraging and helpful to me.
What is your favorite part about being a Baddie?
Throughout my journey, I have been trying to show positivity and high energy. Keeping my mind in a positive mindset while enjoying everything around me. This is how I show up as a Baddie. Sometimes, I will post videos of myself dancing or my day-to-day. I do not allow this diagnosis to break me.
My grandma died from ovarian cancer. My dad’s sister died from lung cancer within a month. Our family members kept telling her to keep it secret. I didn’t want it to be a secret.
When were you initially diagnosed?
July, 2022
What was your initial diagnosis?
I found a lump and it took a while to see a doctor. The white female doctor said that I had a “little bit” of cancer. She gave my diagnosis over the phone, and I was told that the breast center would call you. I ended up having to call them and they gave me the run around. I was confirmed originally as Stage I in Savannah, GA at Memorial Health.
I had to make them check me out. I finally got a biopsy. They told me that there was nothing that they could do for me because it spread to my bones. I found out about Stage 4 IV/MBC diagnosis on the portal.
Like many others, I had gotten a mammogram a year prior.
I was unable to move my shoulder. They took lymph nodes and the PET scan revealed that it had spread to my bones. City of Hope (CA) said that he was surprised that I only felt pain in my shoulder because it was from my neck to my knees.
I had a hysterectomy almost 3 months ago (early 2023) and this has helped because I am hormone positive. My treatment included chemotherapy, radiation, and hormonal therapy
I transplanted back to CA from Savannah, GA. I feel like a fish out of water. Friends and family got me into City of Hope. My family in Trinidad called me to suggest that I go there for a 2nd opinion.
What age were you when you were diagnosed?
42 years old.
How did you feel when you were initially diagnosed?
I was really scared. It frightened me. I was not someone who was sickly and I’m very independent. I just didn’t know what it meant for me…so did those words mean that I was going to die?
What is your current treatment plan?
I’m on hormonal therapy Kisqali (Ribociclib); I had to fight to get this medication. I take three tablets every day. Exemestane. I also get a monthly bone shot.
What is one thing that you wished you were told before treatment?
I didn’t know how much my body would change with the treatments. Weight gain, achy, neuropathy, and skin darkening.
What is one fun activity that you did for yourself during treatment?
Fairy photo shoot. I write and I have a children’s book called Brown Sugar Fairy. It was at Laguna Beach, and it was so much fun.
What was your biggest self-discovery or revelation after you were diagnosed?
I had no idea that Black women were so under-served in this area. The more that I started learning about the disparities—particularly where you’re located—was a major shock. Just knowing what to ask or even be concerned about was a self-discovery.
What was the most difficult part of your journey and how did you overcome it?
Trying to find my place in the world again. Being that I had to drop everything to get treatment and be around my family. It was like, how can I be a part of this community now? The things that I’m used to doing, like taking a walk…I now have to consider so much. Recently, I’ve been tackling painting again. I told myself just try, so I’m doing just that.
What advice would you give on how to best support a loved one going through breast cancer?
My friends sent me various things of comedy, things I could laugh at in those moments. It was a great distraction since it brought a lot of joy.
Did you lose your hair?
No, I did not lose my hair.
What physical changes happened after being diagnosed with breast cancer?
Weight gain, body aches, neuropathy, brittle bones and chemobrain are the physical changes that I’ve had to face.
Do you believe that being diagnosed with breast cancer has had both some positive and/or negative changes in your life? Why?
Positives: I didn’t know just how many people really cared about me. When I made it public, so many people prayed and began telling me stories that they remembered about me. I didn’t know my impact on other people’s lives.
I’m an extrovert and an introvert. With this diagnosis my daughter started a GoFundMe for me. It was hard for me to see that, but I was thankful at the same time.
Negatives: I feel that I am in a space of neediness.
Meta-thriver, what does that mean to you?
Meta-thriver means taking it one day at a time and trying to find the moments when I’m the most comfortable. I’m learning to live life with it since it will be with me the rest of my life. Do the things that bring me joy.
What advice would you give to someone trying to navigate being a meta-thriver?
Not all Stage IV diagnoses are the same. You have to find what is right for you. People will tell you so much and a lot of it is full of judgement. Do what is right for you! Listen to your cancer team, do what you are supposed to do.
How do you deal with insensitive comments?
Some people told me that I had a demon in me, telling me to repent my sins and that was the reason that I had cancer. Sometimes, I don’t respond, other times my response is to be very present and vocal about my life.
Have you truly accepted your new normal?
No, not yet. I’m reminded every time that I have to get up, bend down, get on the floor, and have to get back up, etc.
Has your anxiety increased since being diagnosed?
Decreased. Those early days, it was crazy. I was on steroids which led me to be jittery, eating everything, moody, etc. I feel a lot better since my test results are coming back good and the meds are working for me.
What does your mental healthcare look like?
It looks like watching reality TV, zoning out, meditating, and energy healing like reiki. All of which helps me ground myself. Not entertaining anyone else’s negative bullshit.
What do you have to repeatedly give yourself grace for since your diagnosis?
Career wise—where am I? I have to remind myself that I was/am in treatment. Allow yourself time to heal, feel better, etc. In general, not being as active as I was.
We as WOC must survive/thrive on many different levels, sometimes to the point where we can’t slip up. How tired are you from just thriving?
I’m not tired. Before I was diagnosed, I always tried to live a soft, gentle life to some degree. There are days where I want to be in my own hermit hole.
What would you like the breast cancer community to do for more WOC?
There should be a “street team” or health fairs where people of color (POC) are existing. Community outreach to educate and empower people so that they take preventative measures and/or to diagnose.
It was hard to find people meeting up, especially for WOC.
What do you do that you feel assists you physically overall?
Shower and get dressed, every day! That makes me feel right so I’m not stuck.
What complementary therapies have you tried?
Reiki healing and meditation.
Tell me about your support system?
My daughter, Azora–she’s a medical assistant. She was my rock through this whole thing. She hasn’t shown me any fear. She’s able to educate me on my scans and things like that. She went to an herbalist to find teas and herbs, she’s very proactive; driving me to my appointments. We live together. I also find support in my dad, my brothers, and my close girlfriends.
What effects did breast cancer have on your marriage/dating?
It’s not something I want to think about at this time. I’m not in the place for that at all.
How has your diagnosis affected your family?
It was awfully hard on my family. We are very close knit even though we lived in different states.
My mom couldn’t handle it when I would talk to her about my diagnosis as it was unfolding.
My older brother talks to me daily because his girlfriend is a breast cancer survivor. They expressed how they felt about it. My dad became a prayer warrior for me. He prays with me and makes himself available for whatever I need. My family came to GA to get me and take me back to CA. I knew that it was, “Whatever you need, we are here, and will help you with this and that.”
What parts of old YOU are still a part of YOU today?
My sense of humor, learning new things, being creative.
What are your favorite parts about the new YOU that old YOU did not have?
I speak up for myself a lot more now. I used to take a lot of heat. I advocate for myself.
What concerns/worries about your illness?
I worry that my body will deteriorate. I know that right now I feel limited, but I worry that it’ll get worse. I worry about what it’ll look like, and look like on me. I never expected to be walking with a cane or slowly.
What is a typical day like for you now?
Go for a walk once a day for 20 minutes. Being at home, crafting.
Why do you feel it is important for us to reach out to your culture?
In the African American culture: It is important because it gives everyone an opportunity to learn and be a part of the conversation. When you keep people in the dark, we constantly become statistics. We need to have access to the necessary information, resources, etc. We need to have representation out here.
In Caribbean culture, it would make a significant difference talking about it. It helps all of them to be able to grow and share their own experiences. I try to be as transparent as I want to be, and I can tell that they feel more comfortable speaking to me. I do my part to normalize the conversation.
If you were to write a blog about yourself tomorrow, what would the title be?
Finding the Magic Within; finding little things that are magical and inspirational.
What was your theme song during your treatment?
“Blessed” by Wizkid.
What is something that you want to tell the lawmakers/change makers?
Do more. Allow there to be more research into MBC meds so one can thrive and potentially survive this versus it being something terminal.
What has been your favorite memory of your journey?
When I had my birthday in CA, I invited my elementary and junior high school friends. We had cake and ice cream. I hadn’t had a birthday party in many years. All of my brothers, cousins, and dad were there. People that I hadn’t seen for years. We painted wooden things and made a healing garden. I woke up that day and couldn’t see. It took until the evening for my eyes to get back to normal.
What is your dream trip/destination?
Costa Rica. I always wanted to go to relax. Also, the Jazz Festival in New Orleans. I wanna go back!
What is one thing that you would want the world to know about you that does not have anything to do with breast cancer?
I would want the world to know that I followed my curiosity in life. Even though things did not stick, I have learned the lessons. I was never afraid to try. I did! I have experienced life!
Please complete this sentence: My why is…?
My why is my younger self. I am little me. I am trying to make little me be proud of big me.
What question would you ask someone you were conducting the interview?
Who were you before cancer? Before cancer, I was busy running around as an art teacher.
How can our readers connect with you?
IG: @aiyshasinclair
FB: @aiyshasartstudio
Website: www.AiyshaSinclair.com
Aiysha, thank you for opening up with me and sharing your story. I imagined that while we were speaking you were in your healing garden with the sun just shining over you. You exude peace and calmness. I found myself relaxing and lowering my shoulders as we continued to converse. I appreciate that you don’t let the days just pass by, you experience your life. I think that it is a whole word in itself! Continue to do the things, speak your truth, and put more peace into the world. I look forward to seeing you evolve and manifest your biggest dreams throughout the moments of life.
