1. How do you know me?
I am your older sister.
2. What were your thoughts when you first heard of my BRCA gene mutation diagnosis?
Absolutely devastated. Heart broken to say the least. I was terrified.
3. How did you feel when I told you I was going ahead with a Bilateral Mastectomy with reconstruction? Relief.
4. Do you know anyone else with the BRCA gene mutation or who has had a double mastectomy?
5. If there was anything about my decision you would have changed what would that be?
I would have adjusted the names on your list of support people.
6. Now that I have had the surgery, how do you feel knowing I’m having complications and will undergo another surgery?
I think it’s awful you have to undergo another procedure and deal with more physical and emotional pain. However, I am truly humbled by your momentum, strength and spirit.
7. Is there anything you don’t understand regarding the diagnosis?
I don’t think so.
8. Do you think the health systems provide enough awareness and preventative measures for Breast and Ovarian Cancer?
No. I didn’t know anything about it until you were diagnosed, other than that Angelina Jolie had the procedure.
9. Would you have done anything different then my choice?
Big FAT no.
10. Any comments, opinions or advice you would like to give to family and friends about being affected by someone with the BRCA gene?
There is no way to know how a woman feels after being diagnosed. I can’t imagine the fear. The only advice to give would be to be there for them physically and emotionally. Educate yourself and support them with all your means possible…before, during and most certainly afterwards. Just because the surgery is complete does not mean the battle is over, There is a physical change to the woman’s body that may be hard to accept and love. Show your love and acceptance.
11. Any comments or advice for me?
Share your feelings with your support system and let them know what they can do to be of better support to you.
Here’s a biggie. Medical insurance. I’m pissed that any woman who tests positive for the BRCA gene will have an extremely difficult time qualifying for medical insurance – even if they have undergone preventative medical procedures. I order to ensure they have, and will be able to afford adequate medical insurance, they must be insured prior to their diagnoses and keep it, or good luck finding another insurance company willing to cover you without paying outrageous premiums. It’s bull shit!!!
Lastly, I wanted to share the toast I wrote to Hayley at her farewell boobies party:
So the purpose of gathering here today it’s to celebrate a new beginning for Hayley. We are not here to feel sorrow for her, but rather to give her our love and support for the brave journey she’s about to begin.
The decision to undergo the surgery was not an easy one for Hayley to make. Hayley does not look at this as a loss, but rather as a gift. Hayley feels so blessed to have the chance to stare breast cancer in the face and give it the big old “F U”, and she’s doing it with grace and style in honour of women near and dear to her heart who did not have the same opportunity ~ some of whom are only with us today in spirit.
I have learned so much from watching Hayley go through the process. I’m proud, I’m afraid, I’m sad and I’m happy. I am so grateful.
Hayley, you are an inspiration to everyone here today and everyone you know. Big boobs, small boobs, fake boobs, no boobs. Boobs don’t make the woman, the woman makes the boobs.
Hayley, My sweet sister. You are so wise beyond your years…
Every time I find myself feeling sad for you, I hear your words echo in my ears…”My Loss will be my greatest gain”. Thank you.
To one of the most bravest women I know… My baby sister Hayley.
Love your big sister and friend,