2014 was the year I started to learn the definition of strong. Before cancer showed its ugly face to me I’d describe strong along the lines of lifting a heavy box at work. Perhaps describe someone who worked out regularly and had muscles to show for it. Never once did I think strong was an emotional thing until I was told I had stage 3 Vulvar Cancer.
A good friend of mine beat cancer years prior, leukaemia, and saw all she went through but knew my journey would be much different. We were also in our 20’s and our coping mechanisms were much different than my diagnosis at 38. She was the only person I’d ever seen deal with the disease and looking back wish I’d done more to support her. She’d been very frail, pale, thin, lost her hair and in solitary her immune system so weak. It was awful to see someone you loved so much get so sick. This was also before social media as we know it, so we didn’t see things the way we do today. I often say people can be cruel with social media but they can also learn so much from it.
My treatment plan was quickly decided at BC Cancer Agency. After my PET scan indicated exactly where to treat, I had cancerous groin lymph nodes removed. Soon after that I underwent chemotherapy and radiation. Radiation being the most aggressive of the two, my pelvis radiated 39 times having me begging for it to stop. My skin peeled, my hair thinned but didn’t fall out, I lost 17 lbs nowhere near as much as I expected. My oncologist told me that was a good sign, that my body was strong and fighting. It just wasn’t the image of what I thought cancer looked like. I was quickly learning that cancer didn’t have just one look.
After four months of treatment it was now time to remove the tumour. It had shrunk but not gone so surgery was next on the schedule. Going in to surgery they only cut the exact size of my tumour to avoid having a colostomy and reconstruction. They teetered back and forth on this and decided since I wouldn’t have margins (excess area around cancer area to avoid reoccurrence) they’d watch me closely. I don’t regret not getting the colostomy at this stage, but had I known what was coming down the line pm things may have happened differently. I really do think things happen for a reason and this was just my path.
After my surgery I developed an infection so was back in hospital ringing in NYE 2015 high on morphine. Lol. Sounds funny now but I was asleep early and no fun. It’s not like in the movies where friends pour in to your room sneaking you champagne hugging for hours. My friends and family had lives to lead and I wanted them to do so. They were at the hospital all the time so this was just another day to me. I began hyperbaric treatments early 2015 to help my wound heal avoiding further infection. It was an incredible experience sitting with 7 other people daily for 3 hours in a clear plastic hood mask, scrubs specifically made not to combust when the “diving” took place. We watched movies as oxygen was helping us heal from whatever had us there. 40 treatments total and I believe had a lot to do with my healing.
As my body recovered from radiation I quickly learned that my bowel control was crap...get it! I had next to no control over my bowel movements as my sphincter was extremely damaged from radiation. Soon I had extreme anxiety after some horrible experiences in my car and trying to find a washroom nearby. I would cry the whole drive home from hyperbaric and if I was stuck in traffic calling friends and family to help calm me down. It was a very dark time for me and I missed some big events for loved ones because I couldn’t handle the drive. I was back working in 2016 and had accidents at work. It made me so sad and embarrassed as I was the boss. My friend often had to bring me backup outfits or if I was able, I went home. I hated working, I hated driving, I was happy but yet depressed as I wasn’t back to the old me before cancer. All I ever saw were pictures of people jumping for joy and saying how great they were doing once cancer free and I wasn’t there. Anger was very present.
I’d celebrated my 2 year cancer free in March but by December 2017 my cancer was back. I’d
suspected for a few months but wasn’t confirmed till mid December. Not that any time is a good
time to be sick, but this was just before a big Christmas away with family from home, South Africa and England. Just great...another Christmas sick. Ho frickin ho. Everyone knew I was sick but we didn’t talk about it much. I’ve got some lovely memories from that Christmas and I got pushed in a wheelchair through security so avoided long security lines. Lol
February 16, 2018 I underwent an aggressive surgery to rid me of cancer for good this time. Tumour was removed which resulted in cutting in to my sphincter so a colostomy was made. Skin was taken from my stomach making a skin flap where my tumour was and where they sewed my bottom shut. In the ostomy community we call this a Barbie Butt surgery. Envision Barbies rear and you’ll get it! My reproductive system wasn’t functional as treatment in 2014 left me infertile, but a hysterectomy was also performed to ensure no cancer was present anywhere. Gotta say not having a period is one of the best things cancer gave me...hormone therapy pills for the win! I was 38 in 2014 so decided not to freeze any eggs, and although I cried that this decision was made for me, I don’t regret it. I’m a happy 44 year old child free cat lady. I send birthday cards to all the kids in my life and that is good enough thank you very much!
When I was told I was getting the colostomy I accepted it immediately. I knew I wasn’t going to continue having accidents, that my anxiety would slowly go away. That I’d be a more relaxed person. I knew it wasn’t going to be an easy recovery but it was one that would only get better over time. Drains, staples, trying to walk, scars, hernias...it’s not been easy but it was also such a blessing. I think it’s why I’m so committed to bringing forth awareness and help others like me. I truly understand the benefits. What images we first think of are not reality. I’m way stronger because of my ostomy. I’m alive and it’s not gross, it’s different sure, but if you asked my loved ones which girl they’d rather help I know they’d say this version of me. You never know what the better version of you is until you get there.
Here I sit writing yet another blog 6 years post diagnosis. This blog has made me strong with words and my Instagram strong with awareness and direction. In no way did I see myself where I am today, a 2x cancer survivor and ostomate. My naive uneducated self thought I’d bounce right back just like the ladies I’d seen in the pamphlets of the waiting rooms. I’ve truly learnt not to judge people as we don’t know what’s going on under it all. Not all illnesses are visible... cancer, IBD, Crohn’s, arthritis etc. That’s it’s ok to wear makeup to look less crappy than you feel. If we all take a little less time judging no doubt we’ll see how strong people around us really are.
XOXO
C
#carly2conquercancer
#winniethepouch
