Wednesday, August 19, 2020

Time does fly

 I never properly understood the saying “time flys” until dealing with illness. In the hardest of moments time seemed to stand still. At the end of the rough still like days, my head resting on my pillow waking up to a new day with new minutes and new hours.

In the agonizing moments I truly lived minute by minute. Then after some time I progressed to hour by hour and day by day. Soon enough time was “flying” and found myself living week by week and eventually month by month. I’ve yet to get over the month time line as I’ve always had some sort of set back. Some of these set backs took me back to day by day and I must tell you, the struggle mentally was hard. It’s hard to see yourself improve to then quickly have it taken back. 

6 years ago today I had my first chemotherapy treatment. I remember showing up wearing lipstick and a smile but that was all a cover. My shield. Inside I was freaking out. Crying internally that I had stage 3 Vulvar cancer and what it meant. I had no idea what lay ahead of me, if I’d beat this awful disease at all, who I’d be.

Time has shown me its ticking hand in various ways. The time I wasn’t sure if I’d wake up after major surgery having a Last Will & Testament drawn up. There were times when I felt like a champion. Walking for the first time after being cut open top to bottom forever changed.  When I heard I was cancer free, feeling like all the time spent in agony was worth it. I was alive. My relapse came just over 2 years later, feeling like I’d been thrown in to a shark tank.  As of my birthday (August 16th) I’ve hit 2 years 6 months since last hearing I was cancer free. 

I could never have imagined 6 years ago where I’d be today. The naive me thought I’d be back to normal, but the new me soon learned that there really is no such thing as normal. There is just you, and that time evolves you along with it. I still have a few more surgeries hopefully to be scheduled soon. The side effects of treatment have been harder in many ways than the treatment itself. My ostomy has become a blessing physically and also driven me in ways I’d never have gone without it and my cancer. 

Starting this blog which has exceeded 107,000 views. My Instagram Ostomate and the City continues to grow and starting to expand in to other social media platforms. I weirdly feel more like me than I did before cancer and ostomy life. My sights set on employment in a relatable field as soon as I can make it happen. I’m very grateful to still have time flying by. I’ve seen others I care for lose their battles, deal with timelines they never saw coming. Survivors guilt is real for me, never leaving my heart. 

Time really does fly, I envision gold glittery wings, so take a minute of it to reflect. Time to see who you are & how that’s totally normal. 

XOXO 

C

#carly2conquercancer

#ostomateandthecity 

Wednesday, June 17, 2020

Not my first rodeo

I lived in Calgary from 2001 to 2009. I knew very little about Calgary before I relocated there from Vancouver. I had a cousin already living there who was my only friend until I met more, and of course knew of the Calgary Stampede.  I was 26 years old looking for some sense of self and obviously some cowboys and rodeo fun!

I took in that first Stampede experience like most did. I visited the popular tent venue with amazing bands, enjoyed beer gardens even though I wasn’t a beer drinker and went to an actual rodeo. I wasn’t a big fan of the rodeo part and never would have thought I’d use the “ain’t my first rodeo” line years later over and over again. As the years passed my friends and I had more Stampede fun off grounds at pubs and bars in the entertainment district which I also happened to live in. 

This past Sunday I woke up in excruciating pain. I’d been having some pain the last few months with my skin around my stoma, and when I woke up I knew the pain was at an all time high. My skin had always been healthy up to a few months back so I was doing what I could to get it back that way. Unfortunately the skin wasn’t going back to where it was and I also noticed some discolouration on my stoma. A stoma is your intestine coming out of your stomach (stool passes through it) and should be a nice pinky red colour. The last while mine had a greeny-brown layer which my ostomy nurse thought could mean a lack of blood flow. We watched it closely but it never went away. The stoma has no feeling so it wasn’t bothersome but the skin around it where my pouch adheres to was/is very raw and sore. I developed mini ulcers on the surrounding skin making movement and wearing a pouch very uncomfortable.

I called my parents at 7:15am in tears. My folks and anyone else who knows me well, know I’m not an early riser so if the phone rings early something is definitely up. Soon after dad was driving me to Vancouver General Hospital (VGH) with my packed bag in tow. You see when you go to the hospital on the regular like I have over the past 6 years, you learn what things you need with you. Extension chord, iPad, ear phones, loose PJ top to avoid the gown when possible that can also pull up for an IV, don’t forget the stuffy to snuggle with and of course ostomy supplies. Most times there won’t be a specialized nurse working and the ER has little supplies on hand. In I walk with a backpack full but I’m ready for a long day or many days. 

I get in to the admissions room wearing a mask of course since were in the middle of a pandemic, and the phrase “ain’t my first rodeo” comes out of my mouth. I’m sure the staff and nurses hear this all the time but I know my chart. I know how hard getting an IV in my non existent veins is, and usually where to put the IV as I’ll most likely have a CT scan and it needs to be in a certain spot. 3 nurses and 6 attempts later I finally have an IV, fluids helping me hydrate and morphine helping soothe my pain. 

As the doctors come to evaluate me my pouch of course needs to be off. Out comes my kit from my backpack and I show them some tricks. I lay there in between visits with a towel over me as there’s no reason to put on a new pouch to only take it off again. Since I have a colostomy and had not eaten there’s no output anyway so all was OK.  Eventually I have a CT scan (pouch on now) and when I see the doctors a couple hours later they explain they’d like to perform a biopsy. Wwwhhhhaaaatttttt?

“Not my first rodeo doc, go for it” I say. They freeze the skin (the stoma has no feeling) and the biopsy begins. The sheet with the hole lays over me and I look the other way. I never shed a tear because I had done that earlier on when I was in pain and admitted. I just lay there, they perform the biopsy, a few stitches on my skin , my stoma scrapped and it’s over. New pouch on. Pain prescription written and discharged. The doctors office will call me with biopsy results hopefully within a week.

I’m getting ready to leave and it hits me. I may possibly have cancer for a 3rd time in 6 years....WTF!  The last surgery was aggressive and I wasn’t supposed to be here again but there are no guarantees with anything is there. Just got to deal Carly...just got to deal. I made friends with nurses while in the ER, counselled a young woman who I was sharing a room with (kidney infection) and even stripped my bed on the way out. It’s all part of my rodeo routine.  Dad picked me up, got some food on the way home, then after dinner discovered blood in my pouch. Back to the ER I went but it wasn’t a long stay, just a clot needing some attention. 

After a good day of bed rest and pain medication I’m doing better. I saw my ostomy nurse today and trying a couple new things to see if that helps my skin. Skin issues are very common for ostomates so this rodeo will come up from time to time. Now I wait to get the call letting me know if in fact cancer is back or (fingers crossed) if I have some sort of infection. Until then I’m remaining calm but also preparing because after all this isn’t my first rodeo. 

Xoxo

C

#carly2conquercancer
#winniethepouch



Wednesday, March 4, 2020

6 years strong

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


Wednesday, February 5, 2020

Catching up

Lots has happened since my last entry. Dawn was kind enough to update post hernia repair and I’ve been updating my Instagram Ostomate and the City on the regular but haven’t written. I miss writing but find my Instagram so much easier for quick updates. Here we go!

My repair wasn’t anything like I expected it to be. I remember meeting with my surgeon many months ago thinking I could convince him to repair all my hernias at the same time. Thank goodness he shrugged off my pitch and is the brains and only did the one. With the pulling of stomach lining and mesh used, I can’t imagine having my entire stomach under siege. I’ve had a couple visits to the ER for pain. I was barrelled over in complete agony and felt a hard mass similar to what was there prior to surgery. I knew it couldn’t be another big hernia that soon post repair and after Xrays and CT scans found out it’s what's called a seroma. 

A seroma is fluid build up that the body usually reabsorbs. I don’t have an infection which is good but the fluid is staying so I feel that hardness. Good news is that the CT scan shows the repair is working. I’m to continue avoiding lifting and excessive movement. In a few months it should be healed and at that time, the repair of the remaining hernias under my stoma will be decided. I’ll have to go through this again but it’ll be different since under my ostomy. This likely means my stoma will change and a new routine will have to come about. My current stoma is very flat/inward so I’m hoping I’ll hit the ostomy lotto and end up with a longer outtie. Much more manageable and a bonus in ostomy life. 

My family and friends continue to be amazing supporters. From texts, emails, hospital or home visits and even taking out my recycling. I can’t risk doing some of these heavier tasks and have my repair fail, that’s the last thing I need. I spend most of my time at home as it’s my comfort zone. I’d rather be in my loungewear comfortably cooking than struggling with sitting or standing while out. I push myself socially every few weeks as it’s easy to fall in to old habits. Those habits for me were anxiety driven. The more I stay in the more I don’t want to go out. So when I do go out, I feel that anxiety coming back. Will I be a burden to others...will I have to leave early?  It’s easy for me to think I’ll just get over it but I won’t. Time is the only thing that makes things better and need to remind myself of that often. And when I do get out, not to feel guilty about it. I’ve struggled with guilt and how people perceive me this whole journey. Big picture I don’t care but little picture I do. Invisible struggles are clearer to me than ever before.

The last few months I found myself watching Simba closely. He was 18 and slim, too slim, but age and an overactive thyroid brought that on.  He was still playful, eating and using the litter box so until he showed distress we forged on. 3 weeks ago on what was Vancouver’s snowiest stormiest night Simba showed distress. I think he had a stroke as suddenly he couldn’t hold his head up right. He was laying down but not making a sound. Simba was a talker so that alone worried me. Shane, otherwise known as Super Bro, came to get us. He’s got the vehicle and tires for driving in the snow and I don’t. We had to drive 45 min to the closest veterinarian open in the evening and in this weather. I held Simba as he fell asleep for the last time and said goodbye to my purrfect friend of 18 years. Even Super Bro struggled with the goodbye but it was great that it happened quickly and we were together. RIP Sim. 

Being home alone wasn’t easy. I found myself staring at the cat beds, toys, anything I had...it was very hard. I knew I wanted a girl for my next cat naming her after my grans. The local pet store had rescues but all males so thought I was safe to volunteer some affection. I also had an idea of what I wanted her to look like. Long story short I go in to give love to some cats waiting for their forever homes and out she walks from the bottom kennel. A spunky gentle 4 month old tuxedo kitty. She had me at meow, we just clicked. My application was approved the next day which was a lot quicker than I expected. The carrier I used for Simba was still in Shane’s car so I had to borrow one from my neighbour. This cat holds the name I would have given a daughter. Marnie Monica. She’s beautiful and loves her jewelry (2 collars already). I’m super happy with her. 

Today was World Cancer day. I wrote a quick post on Instagram earlier and it got me to thinking. I’m 12 days away from being cancer free for 2 years, with that 2 years of ostomy life. I’ve changed so much these past 2 years with the obvious physical changes but more so with passion and drive for ostomy awareness. I was so shocked to learn how little support there was and have made a commitment to doing anything I can to change that. Ostomate and the City has been well received and continues to grow just like I do. 

I never made it to 3 years cancer free with my first diagnosis. I’ve come to tell myself that this second battle was my destiny. Being an ostomate is 1000% challenging at times but it also makes me feel more special.  It’s my thing just like someone being a powerful business person or a parent. It’s my conversation piece with new people that I hold no shame about. I stand out for a reason and I’m ok with that. Next step is to hopefully work in an ostomy or medical role. Why not take all this and merry it with a new exciting career. Anyone hiring? Marnie and I will relocate within reason 😊 

 XOXO

C

#carly2conquercancer
#winniethepouch

Thursday, December 5, 2019

Update Dec 5th



Sorry I am a day late! This is from Carly yesterday :)

Pic 1 was taken months ago and shows how big my hernia was. It was even bigger at surgery this Monday.




Pic 2 was taken today just 2 days post #umbilicalherniarepair I always knew how pregnant/fat I looked and how sore it was, but until you actually see the difference it’s unreal!



So glad to be healing generally well post surgery, home in next couple days.

The staff at VGH have been amazing! I thank you all on floor 8 and in the OR and recovery room. 8 weeks of recovery here I come!

Tuesday, December 3, 2019

Update Dec 3rd from the Hospital

Update from Carly from this morning:

After surgery, she was in recovery for 7 hours, which was unexpected!! The epidural didn't freeze her all the way so they had to keep readjusting the location of the needles to get her pain under control.

While this was going on they gave her a shot of fentanyl, which did help with the paid but it brought out her anxiety and so many emotions. It felt like a double edge sword - do you stay pain free and feel really crappy???  the fentanyl left quickly and she just stayed on Morphine drip (see the green light in the pic below). 

She did have a hard time sleeping at all yesterday, so she took 1/2 a sleeping pills last night... slept maybe 3 hours here and 2 hours there.. she does have a catheter and a binder (girdle to hold everything in place) which makes everything uncomfortable.

She is considering today Day 1 of recovery! She got up out of bed, walked around and is sitting up! Tomorrow they will probably take out the epidural and the catheter and then Thursday she has to make sure that the pain is under control then she can go home.

She is in room 8220 Jim Pattinson pavilion and says thanks for all your texts, emails etc so very sweet! Xoxo C







Monday, December 2, 2019

Update Dec 2nd from the Hospital


Dec 2nd 4:30pm

Carly's mom posted this on her fb page:

Surgery went well today and Carly is “put back together”! She is currently in recovery and should be in her room about 5 pm so no room number yet. Best not to visit tonight. She will let you know when she is ready😉. Thanks for all the support you give her!

Marj and Grant


Hoping to speak with her in the morning and I will post another update!

Cheers, Dawn