Dec 9, 2015
I have to admit when I finally got my appointment date with Dr Kristensen, the gynecologist who would talk to me about having an ooferectomy, I was really disappointed. My appointment was for the end of March. March 20. I got my genetic results at the beginning of Oct. That means almost 6 months from when I got my genetics results, to when I would just talk to the doctor. When the genetics counsellor mentioned that the last woman got the surgery within 3 months of being at the genetics clinic, I was kind expecting to get in to talk to the gynecologist within a month. Not 6.
When I went through all the tests to get diagnosed, then was diagnosed with canser, everything happened fast. I received top notch care. I felt like my life mattered to all who were involved on the medical team. I realize having cancer is something that requires urgent attention. But an appointment about preventing a canser that I have an almost 50% lifetime risk of , 6 months out, was like a punch in the gut. It made me feel like now that it was genetic, and that it only affects a small percentage of people, I didn’t matter. That my life didn’t matter.
It was a terrible feeling.
“Genetic” cansers tend to be more aggressive, harder to treat as well as occur at an earlier age than “non-genetic” cansers of the same kind. The key is prevention, or at the very least, catching them (very) early in order to have a better chance at survival. It made me wonder how many gynecological surgeons we have in the province, and how much money goes into the hereditary canser “sector”. I still hadn’t heard from the GI clinic about pancreatic screening either. I felt like a pest every few weeks calling the genetics counselling to see if they had heard from the GI clinic. But one thing I’ve learnt is you are ultimately responsible for your own health and you can get lost in the shuffle, so I kept at it, even if I was feeling frustrated with each call that didn’t result in an appointment.
From the time I had received the crushing genetic testing results, I started looking for others with BRCA1 mutations to turn to to discuss all the stuff that inevitably would come up as I processed the info. I found a few BRCA1 groups on Facebook. I joined a couple. I noticed in many of the groups there are a lot of previvors. What that means is they are people who carry the gene, but have not had canser – although they are at a high risk for breast canser as well as the others I have mentioned in prior blogs. They still have decisions to make, but as a preventative measure. I honestly found it a bit hard to relate sometimes… Or maybe I just wondered how could they relate to me when, although I carry a mutation, I also have scars and baggage from going through canser treatment, which is something they have not been through. We are making similar decisions about our future and our health, but our paths to get to those decisions are very different. So are the things that need to be taken into consideration – like radiation with regards to reconstruction. And the “flashbacks” that future surgeries can evoke from going through canser treatment. Or having to decide if/when to get a mastectomy when you are young and never had canser (although having the gene puts you at high risk – talking 80%- it doesn’t mean you WILL get breast canser – so the decision is ultimately left up to the individual). I am in no way saying one is harder or easier than the other – but in some ways its totally different. It bummed me out cause sharing and knowing others feel similar – that it’s not just me – is how I’ve gotten through so many scary things in the last couple years. And now I was mostly just reading what was posted cause I didn’t feel like some of what I was feeling was relatable to the rest of the women in the group…I felt like maybe it was just me. It also felt like my group of “canser peeps” who “got what I was going through” shrunk infinitely smaller. Which made me feel very alone.
This turmoil in my mind was not helped by my avoidance of the gym at work. My self-esteem was again at an all-time low, and I couldn’t bear the thought of going to the gym with colleagues who might look, or wonder, or talk about me and my freakish body. I’m sure not exercising made things worse. From July when I went back to work, till Christmas, was probably the hardest 6 months emotionally since finishing treatment.
Its only in looking back that I realize it was completely understandable. I was adjusting to going back to work. I was adjusting to being more tired. I lost friends and my dog to a disease I hate with all my soul. And I didn’t have the benefit of riding with my One Aim team now that winter was here. Or exercising. And I was too tired and stressed to meet up with my canser girls…I was lacking many of the supports that up till this point had gotten me through the rough patches (I still did have Phil, my family and girlfriends, without which I would have for sure been in an even worse place)
After talking to Phil, my Mom, Andrea and Dr. Taylor, I bought a gym pass for the new year (yes at my work gym – I decided I should face those insecurities head on...which included a new gym outfit ha). I called Kelly for a meet up. And I planned a One Aim Christmas party so I could see my beloved teammates.
Those were some of the best decisions I could have made, cause they ultimately led to a complete shift in my way of thinking, and best of all, in my way of viewing myself physically. Which was kind of funny timing with the New Year on the horizon…