Updated: Sep 8, 2020
It’s inevitable…we all know or will know someone that has this terrible disease called cancer.
I, fortunately, am not the one, but I am the sister of a survivor. I’m Tami, 36 years old and my sister Mandy, was diagnosed with Breast Cancer in November 2018 at age 37.
We have a family history along with the BRCA2 gene mutation. I was living 2 hours away from my family at the time and decided last minute to spend Halloween night with my nephews and sister while her husband was away.
Talk about how things can change overnight. The next morning was never expected to go as it did. I dropped the kids to school as my sister went off to work. When I was heading down her street to make my trek back home, she texted and asked if I was still around and my heart dropped. I met her back at her house. What felt like hours was only her 5 minutes away, and I just knew there was something wrong. I had those 5 minutes to re-group and prepare myself for what was to be heard. I paced the living room watching for her as she pulled up, and that is when I saw the tears. I held it in and was strong at that moment and beyond. I said to myself “Tami you can do this”. I suffer from anxiety and have for most of my life thus far, and usually consider myself weak, but not this time. The news fled her mouth as she came in the door, and I was unsure how to respond, at that moment she just needed me to listen. For hours we sat, talked, cried and I was so glad I could be there to support her in this life-changing moment. I wasn’t going to show weakness, I needed to be that rock! My sister was still my same sister sitting in front of me, and I truly felt that everything was going to be ok.
I helped my sister by making the tough call to our parents and brother telling them the news. Again, all honesty, very hard. My advice for this is to take 5 very good slow deep breaths, stay strong, and most importantly positive. I’m not saying don’t cry or be sad if that is what you feel, I wanted them to know that she was in good hands at that time, and was doing well, so holding it together for them was my best choice at that moment. I checked in on my family later to make sure they were doing OK with the news, of course, they weren’t it’s their daughter and sister, but she needed us to be strong for her.
Within 24 hours we were sitting with her breast surgeon. I paced the floor as she sat so calm, I blamed it that my back was sore, but I was nervous and feeling so many emotions. He joined us and between the both of us, we can agree it was lots of information and fast happening.
I stayed with her for a few nights until her husband was going to be home. At night that is when I would allow my tears to fall. Undercover. And that is OK, we have to let those feelings out! It is blatantly sad, I was angry, I was confused and it all felt surreal. I googled “the best” Breast Cancer surgeons in Canada and the USA until the late hours of the night. Finally, I would get 2-3 hours of sleep.
I went with my sister to pick out her wig, as we know she was going to start chemo soon. We made light of the situation, had a few laughs, and found the perfect one. Her chemotherapy started and I drove down to attend one of her sessions. Just being there chatting about random stuff, looking at magazines, and not concentrating on why she was there, is so helpful. I would come down from Ottawa to help with the nephews, make meals, homework, activities as much as I could. I’m not going to lie, each time I was on my way to her house I was so nervous, I didn’t know what she would be like or what to expect when I got there. The chemo made her very tired and nauseous. I was so happy to help with all I did. Not having kids myself, I can see how much involvement and energy is spent. I WAS BEAT by the end of the day.
It is easy to slip your mind into negative thoughts, I tried constantly not to do that. A mutual friend of ours was always there for me, we talked about the stuff that made us feel sad, mad, angry, and confused. It was very reassuring to have that person there. Having supportive people around you, even as the caretaker, is so very important. Someone who can share the same feelings of being on the outside looking in, figuring out how to support and be there helped when we could talk about this together. Caregivers often feel guilty because it isn’t them going through the diagnosis, however they still need to find outlets and coping techniques so they can be the best they can be for the patient.
During these times, it was recommended I get the BRCA genetic testing done myself. My mother has the gene mutation, and now my sister. That was something I had to do for me. It took six weeks before I got my results. During those times I was considering my previvor options and what I would do. I decided on what I would do, but fortunately found out I was negative for the gene. This was a very happy moment for me that quickly turned sad. Why? Why them and not me? How is this possible? How am I going to tell my sister? Will I hurt her feelings? Nope, the amazing role model she is took the news gracefully. She was ecstatic that my results were negative. I still didn’t feel it was fair, but we can only positively move past this.
With treatment, time did fly by, when you think it wasn’t going to. I felt bad for her being so beat up by the procedures, but she was positive and strong and still the same sister I knew and loved. We made sure to talk every day and still do!
Tami Perera - December 4, 2018, Journal entry from my sister's second chemo treatment
What I learned from my sis today...
- Don't sweat the small stuff, she was so calm and chill.
- Be nice and you will receive the same, she was so kind to her care team.
- Just be yourself! She was joking and talking like a good ole coffee date.
- Rest, she knows to listen to her body and is a sleeping beauty now.
Knowing what I know now, here are some tips for helping someone newly diagnosed.
· Listen, Listen, Listen don’t try to come up with a plan, ideas, cures just LISTEN!
· DO NOT google this can be very overwhelming, everyone is different
· Be there for them, clean, make meals, take kids, look after pets without them asking
· Have a good support group, you need this to be the productive caretaker you are
· Journal your feelings, let them out on paper, and get them out of the mind
· Practice self-care. Don’t forget to eat, rest and drink water yourself
· Trust, that things will be OK
· Stay positive!
I’ve compiled a list of things that I gifted/did for my sister that may be beneficial for others as well;
· Essential necklace with frankincense essential oil (encourages peace and relaxation)
· Natural hand sanitizer that guests could use upon arrival of a visit
· Kimono that was very useful during chemo. Sometimes it can be cool and sometimes warm
so this is easy to take on and off when a PICC line is in
· Grass-fed beef bone broth. Very nutritious and delicious
· Homemade iced green tea with lemon for a nice cold refreshing drink
· Searched a good book for Mandy one I found that she loved is called Dear Friend – Letters
of encouragement and humour by Gina L. Mulligan
· Started a group email for donations during the hard times of less pay. This was sent to work
colleagues, friends, and family. (surprised her after 2 weeks of donations)
· Check in often, don’t expect a response
· Breathable nail polish so she could cover some of the effects of treatment
· Favorite snacks, she loves Reese’s, I made homemade organic PB and Chocolate ones for
· Researching when she asked, helping simplify things that she wanted to know
· Find time for small, slow walks
· “Lent” her my yoga mat and when she found a new love for this practice, I never asked for
it back (we laugh about this one)
· Breathe magazine – something easy to read, short stories and techniques to be mindful
6 months after her diagnosis my husband and I moved back to our hometown. We're now 10 minutes away from Mandy and her family. Life is short, it felt right. I’m so happy we can hang out more often now! There isn’t a day that goes by that I don’t think of my sister and what she has gone through. She is such a rockstar! She has started this blog to help inspire people that are going through the same situations and I am just in AWE of her for doing this. Back to work full time, blogging, 2 kids, 3 cats, and a husband….WOW! I hope this helps both patients and caretakers know that there are better days ahead.
I pray for everyone, I pray they find a cure, stay strong, and don’t give up!