Hello everyone.  I wanted to do a final entry and inform you of the new way I'll be blogging moving forward.  I just realized that today, June 6th, is national cancer survivors day so an even more purposeful post.

This blog was started in 2014 upon my diagnosis as a way to keep all my amazing supporters up to date with all things cancer.  Along the way I found this blog to do more than that.  It became my personal therapy, keeping me out of a therapists office and depression...most times anyway.  I learned how much I love to write and told by many I had a flair for it.

This blog sits at 110,332 views as of now and that tally incredibly touching.  The fact that so many people near and far cared enough about me and my family to log on is extremely humbling.  Simply amazing to see where we have been and how far we have come.  I say we as there is NO WAY I could have gotten to where I am today without you.  I still have every card sent to me and one too many medical bracelets (and more) in my cancer memory box gifted to me by Karina.  I saved so much through my battles.  Not for me but for my family.

I'm going to be extremely honest with you right now.  I did not think I would live, I thought cancer was going to win.  I kept my memory box as a way for my family to see your support upon my passing.  To know who was really there for me.  We had so much going on during it all and I didn't want my passing to overshadow the love you sent my way.  My hopeful and positive attitude was in no way fake, but I must tell you that it was more to help my supporters than me.  My love for my family saved me from the looney bin & dark path.  Man, just typing this is brining me to tears.  I need wine before I write my next paragraph. 

7 years end of June/first week of July this gong show started.  I don't feel like I need to summarize the beginning as we all experienced it.  Stage 3 cancer (of any type) is no joke.  The universe couldn't just give me an early stage cancer of the elbow for crying out loud, no offence to cancer elbow survivors as I'm sure that's a thing, but I'd rather have lost my elbow than having vulvar reconstruction LOL.

From day 1 nearly 7 years ago I said I would make the things happening to me mean something. What that something has meant has changed over the years.  With your kind donations I've raised money for the BC cancer agency, but found they have enough people doing that already.  Now once a year, I raise money for Ostomy Canada.  I've discovered Ostomy Canada has no government funding, no help from medical foundations and completely run by volunteers.  Yours truly is the secretary for Ostomy Vancouver.  People across our country have little to no help with the high expenses.  Many factors involved with that, but basically a month of supplies typically costs anywhere from $200 upwards of $900 depending on what you need supply wise.  Each province has different funding options but none of them help anywhere close to what they should.  Thank you for taking my once a year email seriously and helping Ostomy Canada.  If you're looking for a deserving society this is one very deserving.  I thank you.

In light of what I hope continues to be a cancer free life, I have created a more relative site that's all my own.  It will be geared mostly towards ostomy life, but will also share new things happening with me.  This past year I've been working extremely hard with my Instagram account Ostomate and the City.  I signed a 1 year (paying) ambassador contract with Coloplast Canada (the brand of pouch I wear) and have gained a nice following.  Seeing the success of my Instagram interaction, I bought my domain name and created my website

https://ostomateandthecity.com/

Everything you see has been done and owned by me.

I've connected with fellow ostomates across the globe "keeping it real" while posting about things I found I couldn't find help with when I needed it, and it's resignating with people.  I have big dreams of where OATC (my acronym) can go, but it's more like a reality dream.  I'm not dreaming of things that aren't achievable with hard work and the right people.  I bet nobody thought I'd be an ambassador with Coloplast 3 years ago as I mumbled high on morphine "I'll make this make sense".  Here I am today my photos on their website and my favourite days spent leading Zooms with ostomates from all over the world.

To end this blog I want to do an acceptance speech that won't be cut off LOL. 

Welcome to the Carly Awards:

Thank you Moselle for helping me create this blog and my friend Candice who typed entries when my hands curled up like claws from chemo. 

Thank you to my Boxing Day cousins who got me an iPad so I didn't have to lug around my massive laptop (it was 2014 lol).

Thank you Dawn who posted on my behalf as I lay in hospital or home unable to do so.  

Thank you to all of you who've supported my parents and brothers (Jay is pretty much my bro) when they were struggling. 

Thank you to my Uncle Max for my first Pandora that has now become and expensive wrist.  

Thank you Uncle B for coming to chemo with me and calling me from the road every single day. 

Thank you KA for the pick ups and Blo out. 

Thank you to my cousin Jacqueline for the jar of wishes.

Thank you to the Paynes for the delivered food and hospital visits.  

Thank you to the musical artists on my "chill vibes" Spotify play list making this super emotional right now.

Thank you to the Thomson family (lots of them) for driving and coming over when I needed you.  

Thank you to the Young's and Haslett's for helping me pack up my apartment when I had to move and leaving flowers in my hospital room when I was gettting a CT scan and missed you.  

Thank you Claire, Quinn and AJ for coming to hold my hand at VGH.  

Thank you Erin L for bringing me books I still haven't read all these years later. 

Thank you Emese for the visit from Calgary: the baked goods and # tshirt.

Thank you Carolyn for squeezing in a hair appointment when my hair wasn't much of anything.

Thank you Trista for being at my side when you we're 8 months pregnant.

Thank you to to the VanDs who came to relieve my folks and watch me pace and sleep.

Thank you to my amazing high school girl gang: Erynn, Nagel, Petra, Cathy, Jessica, Melissa, Ashley, Amber H for taking shifts at VGH, at my home and all those tough phone call conversations.

Thank you Amber B for helping me shower for the first time with my ostomy.  For flying out to be with me before you lived in BC. I adore you.

Thank you to the Holwills, my J's and auntie who have been rocks with desperate calls and wisdom.

Thank you Auntie Karen (AK) for helping me with recovering cushions, making ostomy covers and drives.

Thank you Jema, Nicole, and Janet: my Tsawwasssen BFFS who have fed my cats and been in my home when I needed them more times than I can count.

Thank you to my parents friends who are more like my aunts and uncles for being there for us all. 

The Gloags and Janie for the drives and puppy love.

Thank you to the Hahns. Auntie Marilyn for staying with me and helping me plant. Su bringing me Vitamin water x 20 to VGH. Steph for letting me use her home as a home base, parking for appts and my pharmacy Qs.

Thank you Shauna for flying out from Calgary to be with me.

Thank you to the Dickens, my god parents, from donations to helping with the move. 

Thank you to my coworkers who came to visit.  

Thank you to the ladies at BAT.

Thank you Sandy for letting me and my parents stay over the night before and the many nights after.

Thank you Crissy for taking me shopping when I needed it most. My favourite cousin from the East.

Thank you extended health benefits for allowing me 80% coverage for a private room.

Most importanly thank you to my parents and brother.  Cancer called and you answered.  I will always be there for you like you have been for me.   Thank you Jay, Maria and kids for the multiple ways of love and fixing the clock in my hospital room.  I love you guys more than I love my cat and that says a lot.

I can't thank everyone as we'd be here all night.  I'm truly a lucky human having too many amazing people in my life that CAN'T be counted on my fingers and toes,  Does this mean I'm a good friend too?  

Ok...I totally get why people are cut off now during speeches.  So many more people deserve a shout out.

Thank you to all of you for being there.  I got you when needed.

Love you all, see you on OATC website, or Instagram etc...don't forget to like my posts OK LOL

XOXO

C

Colours of the rainbow

I remember drawing rainbows as a child.  All the coloured markers laying on the table and some of them even had scents. Red was strawberry, yellow smelt like lemons. A rainbow was uplifting and beautiful, sometimes even a pot of gold found at the bottom of my drawing.  Seeing a rainbow after a light rain shower mixed with sunshine is a pretty cool thing. I’ve tried to chase a rainbow many times.

I think of rainbows completely different now. Each coloured stripe represents a different emotion and feeling for me. Red is often times anger or frustration, the middle colours more peaceful, and the blues a sign of peace or an ending. 🌈.  Life’s racetrack in colour...stop, easy, start, stay...often on repeat.

I’m in the hues of yellow right now.  After my hernia repair in December 2019 I’ve been dealing with reoccurring seromas. A seroma is a fluid collection that the body hasn’t naturally reabsorbed post surgery. Big factors for why this was happening is no doubt having had pelvic radiation and pelvic exenteration surgery. Fluid in the belly is debilitating pain and mine resembled a pregnancy. 

Since November 2020 I’ve had 2 minor draining surgeries and 2 tubal draining procedures.  Add these all together and I’ve had over 6L drained, probably closer to 7 but I’ve kinda stopped adding it all up.  Think of a milk jug or large wine bottle to put that in to perspective, it’s a ton of fluid, the draining gives instant relief.  My recent experience involved 10 days of a drain connected to me to get what the hospital procedure couldn’t. A total of 850ml drained over the 10 days. I lugged the drain around hanging from my side, the container tucked in my leggings (well actually my undies). We went for a pedicure, checked out Homesense and grocery shopped.  I didn’t care if people saw it and surprisingly my cat never went for it once.

It’s been about a week since it was taken out and overall I’m feeling good. Fingers crossed that over the next 2 months it stays away. I still have a couple hernias under my stoma to fix and this won’t happen until the seroma BS stops. Unfortunately my skin has taken a beating from all the surgeries and stretching. Crazy enough no stretch marks but the skin has definitely looked better. End goal is to have things tucked when hernias are repaired. One step at a time though. 

This past March I lost a dear friend. She was actually my first ostomy & cancer pal.  We had messaged a bit before my 2018 surgery as she was a few months ahead of me in her recovery.  I was 2 days post surgery when Joanne showed up in my hospital room cookies in hand. She found an extremely medicated Carly with my mom visiting, both of us in shock of this bright light that exited my room as quickly as she entered. She lived up the road from me so that helped us become even closer. Unfortunately her cancer came back and she’s now passed on. I miss her dearly and tear up every time I speak of her. Her passing has really affected me.  I’m crying right now if I’m being honest.

When I look at or draw my next rainbow, I’ll be thinking of Joanne. She was a ray of light.  Correction, she was the pot of gold.  I continue to advocate for cancer & ostomy life not just for my own sanity, but also to be someone’s pot of gold like Joanne was for me. 

 XOXO

C

#carly2conquercancer

#ostomyproud

Shopping with a twist

I’ve always enjoyed a good day of shopping. As a teenager my friends and I would catch the bus and head downtown. We lived in relatively the same area so would meet at our respective stops.  Whoever was on the bus first waving out a window so the other would get on. This was in the 90s before cell phones and the internet of today. I did have my own landline tho which I thought was super cool!  We’d call each other, set a time according to the bus schedule booklet and off we went. 

Retail and malls in general were very busy back then. Food courts still allowed smoking & it was hard to find a seat. Sometimes we’d split up since we liked different stores. A time and meeting spot chosen (usually in front of NY Fries) and off we went.  We always made it back to each other showing off our cool finds, eating our fries & probably smoking a cigarette. Common we’ve all been there lol. 

Shopping is still something I enjoy & get a rush off of, but now ostomy supplies added to my list. Weird thing is, well maybe not weird but funny, calling in my order and then getting it a couple days later brings me joy. Maybe it’s just the fun opening of the box or seeing it at my door. Because...I know what’s in there yet I get excited. I open it up, organize my cupboard and kit. I get a rush similar to shoes, ok Carly simmer down. A shoe rush is untouchable, simmer girl, simmer! 

The brand I wear is called Coloplast. It’s the brand I settled on early in my ostomy life. I tried other brands but always came back to Coloplast. I find the look of their pouches modern and fabric does great in water and I’m a bath addict so that’s important to me. They blend in well to the body and can even fold in half. Before I had my ostomy I pictured a brown saggy ass bag attached to my stomach. And those do exist but it’s not what was right for me. I also stopped using the word bag and instead pouch. I’m not offended when people say bag because it isn’t wrong..it is a bag, but for me a stigma attached to it.

Coloplast has great packaging so the shopper in me likes the way it looks all organized in my cupboard and kit. When I’ve shown people supplies they’ve been surprised at how “normal” my pouch looks and how small the appliances I use are. That the packaging is nice. Like me in the beginning, people think you’re gonna see warning labels and  💩 emojis on packaging.  Without education on any topic conclusions will be made which is why I’m online advocating. To lessen the stigma and embrace being different. Almost everyone has something be it a bad knee, arthritis, MS, a heart murmur, ostomy...something. As a adult going through cancer and now being an ostomate, I have truly learned a lot about invisible illness and judging. You really don’t know what someone is going through. 

30+ years later I rarely go to a mall. Maybe because I worked in retail for way too long and know how hard a job it is. But really I don’t go because I don’t have to. I can order most of what I need online, even my groceries can be delivered. I don’t find the buzz like it once was, the stores aren’t as good, the quality lacking. Don’t even get me started on customer service. Gone is the landline, my cell phone and iPad connect me instead. 

I’ve joined forces with Coloplast Canada as an ambassador. I was posting my reviews via my Ostomate and the City Instagram and got noticed.  You may see me in some print ads, maybe at some events post Covid and lots of chatter on my social platforms. I always knew I’d take this crazy physical change and go somewhere with it and this is step 1. Very excited and very honoured. 

The shopper girl in me is never far away. Just shopping in a different way and now for some different accessories!

XOXO

C

#carly2conquercancer

#ostomyproud

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 

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

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

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

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!

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

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

What’s up Doc?

The Looney Tunes cartoon famous line “What’s up Doc” usually delivered by the iconic Bugs Bunny, has kind of become my line and looney type lifestyle over the last while.  Seems with all the doctor appointments and conversations that come with, all I really can say is exactly that..what’s up Doc?

The hernia repair wait has been going on for what seems like forever. My first hernia appeared in May 2018 3 months after surgery. I was still in recovery mode so they couldn’t do repair at the time with what was a relatively small hernia. Jump forward to today and that hernia is now the size of a volleyball and unfortunately have 2 more on my ostomy side. The volleyball is on my right and causes me pain and discomfort every single day. 

This past Thursday I had an appointment with my surgeon who I hadn't seen in 9 months. I had so many things I wanted to say...so many ways on how I wanted to say them, but after a good reminder from a friend, I went in calm and understanding. The doctor really only cares about the hernia and not my emotions or stories of my struggles. He explained he’ll only be repairing the big one and not the others as it’s just too hard a surgery all at once. It’s not as simple as we think so the less bothersome hernias will be repaired likely a year later. As much as I understood I still felt defeated and left knowing no specific date of repair the Dr just saying it would be by years end. 

I got in my car and drove straight home. I’d planned to visit some friends after my appointment, but just wanted to be alone in my misery. My phone rang maybe 30 minutes after I returned home & it was the surgeons office. My repair has been scheduled she told me so I grabbed my pen and calendar awaiting the specifics. December 2nd is surgery date at VGH, time TBA a few days prior. Surgery will take about 2.5 hours and I’ll be in hospital 2-4 days post op. A strict recovery routine for a minimum of 6 weeks depending on how things go of course. I hung up the phone and did a happy dance. May not be exactly what I wanted but man I’m excited!

Ostomy life has all around been quite good these past 19 months. Lots of learning and healing in the beginning, but once you get a grasp of things your routine is set and it becomes part of you. I don’t even blink anymore, Winnie is just there & I’m so much better with her than without. I wouldn’t be alive today had this surgery not happened so that keeps me in check when a bad day shows itself. I was telling someone the other day that I feel more special with her, like how weird is that right?  As much as cancer did all this to me it really has given me so much. However a 3rd battle is not wanted so let’s not get too carried away Carly!

A couple months back I landed in hospital with a blockage and that pain almost felt worse than my initial surgery! Complete agony and felt like I was going to explode from the inside out. I had what’s called an NG tube placed down my nose to my stomach to help pump out whatever caused the blockage. That was such a creepy feeling going in and staying there over 3 days especially while vomiting!  That hospital stay CT scan revealed the 3rd hernia...can a girl not catch a break?  Things really do come in 3’s don’t they.  After 3 days in hospital and being high on morphine (needed it for pain) I returned home and vowed to never let this happen again. It’s not something I can control but I can do many things to avoid. No seeds, nuts, corn or peas & chew chew chew!  

Over the summer I’ve been in the water a lot and know many ostomates are reluctant to swim. I’ve been in the ocean, lake, pool and have baths numerous times a week with no issues. I’m such a water person & glad this was an easy transition mentally and physically. Had cancer taken this away from me too I may have lost my mind as I absolutely love the water. 

From day one I said I would bring forth awareness any way I could and so far doing just that.  From my article published in this summers edition of Ostomy Canada magazine, to my Instagram and (not so good) YouTube channel under the handles Ostomate and the City.  Right now I’m learning the ways of green screen and hope to post my amazing 1st video this month. I’ve got all the tools just need to figure out the editing process.  

Thanks for continuing to read my blogs folks!  After this entry I’ll exceed 103,000 views which is so incredibly humbling. I’m always so amazed at the tally of views it’s getting from all over the world. I know there are better and more current forums and possibly more I could do with it but I like my old ways. It was born from the evil of cancer and now lives on through inspiration so why change what’s not broken right?  Plus the other projects are my main focus for now so be sure to follow either or both if you want to see more on the regular. 

In the words of Bugs Bunny.....That’s all folks!

XOXO

C

#carly2conquercancer
#winniethepouch

Friends

Where would we be without a little help from our friends?  There are countless songs about friends, and lest us never forget the still popular TV show ‘Friends’.  Best of all our actual friends who we, or at least I, think would make one a heck of a cast!

Today I had my dearest pals, their partners and children over for one of our BFFs gender reveal.  Erynn and I were throwing this shindig together and never once did we tell any of the others the sex of Cathy’s baby. Our vault was closed and nobody knew up until today when the balloons were popped, the blue one containing confetti. If you’re smart you understand it’s a boy!

I set off to pick up the balloons an hour pre-party and found myself driving home a little bit emotional. As I looked in my rear view mirror the pink and blue balloons bouncing around, I couldn’t help but get a little teary eyed.  If I’m being completely honest I wasn’t feeling emotions for my friend but instead for myself. It was a very real moment realizing that I’ll never have my own gender reveal party. I haven’t felt emotional on this level since my first diagnosis in 2014.

Upon diagnosis my doctors let me know that my cancer treatments would make me infertile. Along with that information I was told I could try to salvage my eggs should I want to try for kids in the future. Before I babble even further, I must say I do not regret my decision so this isn’t a blog of regret. I decided not to salvage any eggs as I was almost 39, very single, would need a surrogate and maybe even a donor. It was just too many factors for me, had I been 10 years younger I probably would have. I called my friends that day telling them my choice. We cried together on those phone calls but knew it was a well thought out decision, just a super hard one.  Jump ahead to 2018 my cancer is back, this time a hysterectomy among other things, so no 1% miracle baby chance left!

Today those exact people were on their way to my home with their kids. It just hit me during that short drive. Saving me from further tears was knowing Erynn would possibly already be at my place and I didn't want to greet her a mess when we’re about to celebrate a new baby for our amazing friend. I turned up my music, shook my head, checked my eyeliner and marched in to my place balloons in hand.  I only beat her by about 30 seconds. 

So here’s how I know I made the right decision for me. I love children and no doubt would have been a fantastic mother, but I never saw myself being a mom later in life cancer or not.  I mail the kids cards, I’ll do fun things like face paints, give them toys, go to movies, play with them over the adults etc etc. Basically the fun stuff...then they become teens and it all goes south lol. But in all seriousness I enjoy that type of relationship and when the kids call me auntie or tell me I’m cool, I melt a little.  Still never made a god mother to any one child so what kind of friends are you people!!!

I see things differently after being through such tough times with some very tough decisions made. Women don’t have to be mothers, it’s not our only role, but had you asked me that question in my 20’s or early 30’s I would have told you different.  We don’t have to judge ourselves for scars, marks, Ostomy’s or any other imperfections. Yes it’s easier said than done...but I think we just have to live and love our truth a little bit more. Today I needed a little reminder of that.

Friends. How would I be without you. 
🎶I’ll be there for you...’cause you’re there for me too🎶

PS-Still no hernia surgery date. They’re big & uncomfortable, back pain now in the mix. Gosh maybe I can relate to pregnancy after all lol lol. 

XOXO

C

#carly2conquercancer
#winniethepouch 

Fairytales

I’ve been doing some soul searching and digging a bit deeper of late, looking for inspiration in all aspects of life and from those around me.  For some reason fairytales always seem to pop up in my head.  If I think about it I was read the classics as a young child, I dreamt of my happy ending and always had faith that all would be ok with my life just like the people in the tales.  There are times I wish I could go back and give the younger me some advice but alas time travel is still very much a fairytale. 

I grew up in a time with no social media influences such as Facebook or Instagram.  No cell phones but instead the amazing private line which I’m sure was more for my parents sanity than my own!  Computers only starting to make change as I entered high school, we still had typing class on actual typewriters and not keyboards. My point being that reality was seen in a different way. The newspaper was factual for the most part, you came home as the sun started to set and you heard stories through friends and family. Cancer was a rarity or perhaps just less spoken of and ostomy awareness was little to non existant.  

Here I sit three decades later typing on a flat screen called an iPad and can google anything. Type in a hashtag and find others with common ground or circumstances.  Had these forums been available in my teens I don’t know how I would have handled knowing that fairytales are just that...tales...imagination and not reality. That life throws you curve balls you weren’t taught about on the pitching mound and that frankly life just ain’t fair.  Of course people had hardships but the way they were spoken about and handled was on a completely different level. 

In saying all this I’m thankful for the technology advancements because I know it’s what helped me connect with people I’d never have otherwise met.  I found some great information and groups to help me cope with my new reality, my new fairytale.  Not the fairytale I had imagined but one I write about in this very blog.  Every fairytale has its struggle. Cinderella was locked away and mistreated and Sleeping Beauty slept a lot. Talk about good makeup and hair with no filter needed right?  At the end of these tales a young prince comes to save the day, not a 40+ aged man most likely fresh out of a  divorce!

The Seven Dwarfs represent my amazing family who number way more than 7 and not all male, and I have no whicked siblings who want to lock me away...well most days anyway.  Instead I have a super brother and a cousin who’s like a brother who would move time for me if they could.  My brothers know I do all I can to be the good sister for them with whatever they ask of me.

As I write this entry I’m understanding that my fairytale actually still exists, it just has some chapters added in the middle.  They may be chapters I’m not happy with but they are my story, my truth with no fiction added. One common characteristic I like to think I share with Cinderella and Snow White is strength. You don’t give up...even if it’s while sleeping!  Yes they had no cancer, no hernias, no ostomy, but they did forge forward with they had.  

I still have hope that my prince will show himself  to me, but perhaps I need to do a little more work on my own princess skills first. And let’s be real, it’s 2019 you don’t need a prince to be happy but it sure would be a bonus...plus who doesn’t love a royal wedding!

 XOXO

C

#carly2conquercancer 

#winniethepouch

1...again

1 or one...whichever way you spell it, it’s the start of something new.  It’s a number symbolizing firsts or 1st’s. One year old, first steps, one hit wonder, first date. So many things happen usually not to happen again, firsts become 2nds. When I beat cancer for the first time and celebrated my 1 year cancer free, otherwise known as NED (no evidence of disease), I thought that would be the only time.  Little did I know I would repeat that first again.

March 11, 2015 and February 16, 2018 are my 1st’s and at the same time my 2nd’s.  I remember that day in 2015 like it was yesterday. My body still so weak and my skin the shade of yellow, but my cancer was gone. I was so excited and so inspired with life it was infectious. When my cancer came back in 2017 I didn’t know how I could go through it all over again.  Perhaps because my treatment plans were different each time, more physically severe the second, I handled things differently. Honestly you just have to deal as there really is no other choice except death, and this girl was not and is not ready for that. 

One thing I figured out early on is to celebrate milestones big and small.  Many firsts were taken away from me, that had I not done something, I’d feel I was giving in more than overcoming & winning. My 1st time being a mother...taken. My first time going to chemo...given. My first radiation, my 1st surgery, all things I wasn’t expecting to happen in my life.  I could have let the darkness overtake me but I wouldn’t give in.  This doesn’t mean I didn’t have a first day of nausea or a 1st day of depression, but I knew I didn’t want to go back there again. 

For this 1st year cancer free anniversary once again I surrounded myself with loved ones. With some of the most important people in my life. My first friends I made in grade 6 when I started a new school after my 1st  move,  my first cat (had to get Simba in this blog somehow), my 1st friends from my new community.  My people... my tribe, they give me a high anytime I need it, and without them I would not have come this far. There are many of you I didn’t see and you should feel incredibly guilty for not sending me flowers on such a momentous day, LOL I’m totally kidding...or am I, LOL, but had I got you all in one room, it would have been the 1st time I’d have to rent a hall!  There are just too many of you, and I’m so incredibly lucky for so much love and support. 

With all this happiness I also can’t help but think I’ve been here before. I’ve celebrated the 1st and 2nd year cancer free not quite reaching the 3rd. I wouldn’t be a 2 time survivor not having a “will it come back a 3rd time”  thought. Over the past 5 years I have paid more attention to cancer life than anything else, it’s what I know best. It became my job. This point in time of my recovery is an interesting one. I’m not quite done but can see the finish line coming around the corner. I’m very aware that post cancer life is standing by, yelling encouraging words to get me across the finish line. My hernias so big and bothersome, I cope with pain and exhaustion every single day.  How am I to start applying for jobs when I have no idea when surgery is nor how long it’ll take to recover. It’s such a tough time trying to get back at it. I’ve always told people that this stage of recovery is mentally the hardest. What you know is yet again about to change, somehow you need to be ready, however it’s just not that simple. 

My hope for this anniversary is to not have to be here again a third time. I hope for a future career where my experiences can be a benefit and not a deterrent.  To wake up in 5 years seeing how far I’ve come and what a difference I’ve made.  I’ll totally admit it’s a scary time, my future has been changed so much since 2015, but I have faith. I have said it before and will say it again, cancer has changed me and a lot of it for the better. I see things a different way, I handle things differently. Sometimes with empathy and other times I’m extremely blunt.  I just get “it” in a way I never did before.  I’m still the same goofy quirky gal who would likely take her lipstick to a deserted island before she would shoes although they’d be a close second. 

We all have journeys that make us who we are. This is mine & this is me...again...another first, a new 2nd go at life & that is pretty amazing. 

XOXO

C

#carly2conquercancer
#winniethepouch

Slumber bowl

This past Sunday was the Super Bowl with the New England Patriots taking on the Los Angeles Rams. Like most other years, there was lots of hype as to who would win and final score predictions.  Little did we know it would be a low scoring game with only one touchdown, with no big reason to get up and cheer or high five your friends. Add in the drama of the half time show artist selection, not being able to see the US commercials in Canada, I was sure glad I stayed home on my couch to watch it. 

Brady and his team taking their 6th title, made me think of myself as a quarterback in my own life’s big game showdowns. I dare count how many surgeries I’ve been sedated for, chemotherapy and radiation, hyperbaric treatments, ostomy life and the dreaded hernias. I may not get millions of dollars or trophies for my big wins, but wins nonetheless. Oh wait I also don’t have a super model partner, better stop this comparison now while I can lol 

I’m hoping hernia surgery is getting close now that we’re in February. I was asked to get bloodwork done which has to be done close to surgery booking. That’s a great sign but also makes me nervous. Minus a recent trip to the ER after a painful blockage passing, I haven’t had major surgery or hospital visits in a while. When you’re in the illness trenches you just go in head up, but feeling a bit out of the trench right now, my head a little shook this time. But in true quarterback fashion I’ll be ready to go on game day. 

I’ve learned of some great health conferences coming up this year. The first is for social media health advocates this April in Dallas. If I’m selected the travel and accommodation costs are covered which makes it possible for me to attend.  I think it would be so rewarding to be surrounded by other health advocates from all medical rhelms.  The other is in Philadelphia in August but no costs covered.  This conference purely for ostomates, an expensive trip and being on disability this last year, I don’t know if I can swing it. Gosh I’d so like to attend though!   Some of my ostomy friends have attended and said it’s super rewarding and inspiring. 

Not much else is new and exciting. I’ve got some hockey tickets c/o Santa (aka my dad) next week.  Canucks vs San Jose which should be a great game. The weather has been amazing on the West Coast. We had a dusting of snow the other day but it was so light it didn’t stick.  Today is a beautiful sunny day, a bit chilly with a temperature of 1c. Can’t complain when I hear of what the East deals with. I lived in Calgary for 8 years so put in my time with cold weather, although it was usually sunny even if freezing. Oh wait one exciting thing, I’m going to the Justin Timberlake concert next week and can’t wait. My biggest fear was that hernia surgery would stop me from going but it looks like all will be fine. I’ll definitely be bringing my 🎶sexy back🎶 Thursday night. 

I continue to stay upbeat, hanging with friends on Saturdays, cooking most days & snuggling with Simba. His old age has brought hearing loss and a lot of meowing. He’s either got a thyroid or diabetes condition, so will have to cross the vet bridge soon enough. I’m not thinking he’s dying, but the meowing for treats all day could make me insane!  Why I yell “be quiet” to a deaf cat I just don’t know but I do.  Lol 

My real health Super Bowl will be on the 16th. It marks my 1 year cancer free anniversary and birth of  my colostomy Winnie the Pouch. Being rid of cancer a second time is amazing, but Winnie has helped me so much vs not having her the first time round. Anxiety mostly gone, completely open as to my ostomy life, I generally feel total acceptance from people I meet. A pouch is a lot easier than a step kid or a crazy ex husband!  I have heard stories from other ostomates who struggle with acceptance, but I haven’t felt that way. I’m proud and better with her so educate anyone who has questions. Because I’m confident no problems have come up, and if they did I’d just toss them aside like the Patriots do their opponents. 

May have some interceptions here and there, but my quarterback life is getting more yards each and every day!

XOXO

C

#carly2conquercancer
#winniethepouch

Can you hear me now?

The phrase ‘can you hear me now’ is famous from Verizon cellular commercials in the early 2000’s. They were catchy and somehow everyone used that slogan and still do to this day. It got me to thinking a while back, as I felt my doctors weren’t hearing me, so one morning I woke up and said they will hear me now!

It’s been a while since my last blog entry, I was in a sad place. Since then I’ve taken some steps and have felt a coasting like pace, often not feeling blog entry type inspiration when in that zone.  I’ve had so many of you reach out to me wondering why no writing, so I heard you and here we are with you as my inspiration. Can you hear me now?

Coping with the depression was hard. I’ve never felt so low in my 43 years and then “fine” a while later only to feel low again. Like a teeter totter in the school play ground. Sometimes you end up sitting up high for a bit when your pal refuses to let you down, and sometimes the surprise when you come crashing down as they get off their seat. I cried so much that the skin around my eyes was raw. I recognized I needed help and booked a therapy session. To no surprise I cried the entire session but felt so much better as I drove home. I had released emotions that crept up on me with someone who could handle it. She was great and I will be seeing her again. 

I kept calling my doctors and set appointments begging them to help me with my hernias. Again I cried. No more stoic behaviour, they needed to know I was in a bad place. My family called and even emailed saying exactly what I said in person. Can you hear me now doc?  Not too long later I received a call from my hernia doctors office saying a cancellation came around and could I come in for a consult a few days later. You know I did. Nice doctor who said “wow you got some big hernias here, how come I’m just seeing you now?”  I swear I saw myself jumping across the table shaking him, but it was just a vision, although I coulda clocked him one!  I left the appointment being told that the larger of the 2 (on my right side), will be repaired in February or March and the other sometime thereafter. Progress made. Keep calling Carly. 

The holidays were spent with family and overall I did well. I often get really bad cramps after eating which brought me to tears (surprise) but I got over it. Basically my hernias are in the way so much that when output travels to Winnie it hurts really bad. When I’m alone or in a smaller setting I deal with it, but when it’s Christmas dinner or bigger situation it frustrates me. I get down because I don’t want to be the sick girl anymore but alas I still am, just on a different level. 

I continue to use my Instagram channel (Ostomate and the City) to bring forth awareness and connect with others who are like me. It’s pretty amazing how many new friends I’ve made without ever meeting them in the flesh. We write each other, we do live chats, we celebrate wins but also recognize struggles. Sometimes social media can take some hard turns but as of now it’s only done wonders for me to connect with ostomates within a great community. I do need to work more with my vlogging but haven’t found it as much my niche as this blog and Instagram.  We shall see what comes forth with it in 2019. 

Doing the best I can to not be in total lockdown, but also respecting my body and the struggles it still has. When I feel good I go out, when I feel bad I stay home, usually sleeping or watching movies/TV. If you need a suggestion of what to watch just ask. I’m mostly in to comedies and crime drama documentaries as they cheer me up. Ones funny and the other makes me appreciate I’m not am addict or a serial killer ha ha ha

Oh 2019 I so hope you can hear me now. All you really need to hear is “I’M DONE”. May this year be a good one for you, for me, for my family and my friends. Winnie will be 1 in February which also marks 1 year cancer free so I may do a little something. I did celebrate these milestones during my previous battle but never made it past 2 years, so here’s to hoping that I’ll exceed that timeline and many other hopes and dreams. Love to you all! 

XOXO

C

#carly2conquercancer
#winniethepouch

Start the car!

Have you seen the IKEA commercial when the lady runs out yelling “start the car”?  It’s a catchy advert that I’ve jokingly used many times. Lately I literally want to start my car and drive with no particular destination in mind, but instead to just get far far away. However we all know you can’t run away from your problems, they always run with you if not faster. 

Battling and beating cancer once before in 2014/15, I felt I’d do the same upon my 2nd diagnosis in 2017/18 and it started out that way. I knew my treatment plan and accepted it but now 9 months post surgery find myself in a tough place. I’ve gently used the word depression in previous posts but know now I am absolutely struggling with depression. Had you asked me in June where I’d be today I’d have told you the complete opposite. I was a warrior princess kicking cancers ass and accepting my new reality. I may have been a little naive in what that reality really was. 

My hernias popped up mid recovery and things quickly changed. At first I thought I had just one and that it was small, but soon discovered via CT scan that in fact there were two. One in particular is very large and I’m not exaggerating when I tell you it’s the size of a volleyball.  My surgery may have kept me alive and cancer free however it’s changed my body dramatically. My ostomy is the least of my concerns as I feel better with Winnie than without her, but when you add in the reconstruction and hernias it’s overwhelming. I’m not feeling like the woman I once was nor the woman I want to be and it’s a big struggle. I have things to do along this recovery road to get me there and it’s a lot to take in. 

I often struggle with cramping when Winnie does her thing and this could be a result of the hernia resting on or blocking my intestine. Obviously I don’t want to have the awful cramping pain so food then comes in to play. If I eat too much roughage I pay for it but it’s healthier. If I eat less or what’s considered less healthy I feel better. Like seriously?  Yet again I can’t get a break. No joke my spring mix may spoil so please come over and eat it!

I’ve been crying a lot lately to the point that my eyes hurt.  Over the past 3 months I’ve seen multiple doctors but felt discarded, so today when I met with my amazing oncologist I let it all out. When she walked in I was already emotional talking with a clerk I know quite well and welcomed her to the gong show.  Where’s the gong drum when you need it!  Y’all don’t need to know exactly what was said & what was done but just know it was intense and emotional .

I do have some positive news in that a January consult with a hernia surgeon has been booked.  I don’t know when I’ll have my final recon surgery but have filled out the admission papers so waiting on the call. I’m seeking therapy which I haven’t done up until now, not because I was embarrassed but because at the time didn’t need it. However now I do. Half the battle is to recognize so my eyes are wide open, and not just because they’re sore!

I don’t think an IKEA shopping spree will help but a nice set of nails, cute ostomy bag covers made by my aunt and possibly some wine could solve a few issues. Christmas with my family, texts about your crazy lives and snuggles with my deaf cat will have to do for now.  In true Carly fashion I will forge forward knowing it will be ok but man it sure ain’t an easy road, speed bumps ahead. 

XOXO

C

#carly2conquercancer
#winniethepouch

Choo choo

A locomotive goes 🎶choo choo🎶 and I’ve often thought of myself like a train. My way of choo-choo’ing is by remaining positive and by taking the wins when they come. However there are many railway tracks to travel and sometimes a derailment happens. I feel derailed right now.

I’m so darn angry and with that comes sadness.  If I’m being completely honest with myself and with you I’m an emotional wreck. I feel like I’ve been hit by a train, like my caboose stayed at one station while the rest of my train at another.  As a little girl I heard the tale about the “train that could” he just kept trying and eventually did. But for crying out loud I’m so sick of trying. If I was to draw myself as a cartoon train I’d be the long eyelash lipstick wearing train with tears in her big brown eyes. I just can’t stop crying tonight.

I’ve had f-ing cancer twice. It’s made me infertille. I have a colostomy. I’ve had parts rebuilt. I have hernias. I’m not ok. Throughout all my treatments I’ve lost a minimal amount of weight, I didn’t even get a revenge body FFS!  A breast cancer survivor qualifies for reconstruction so why the heck can’t I qualify for, or shall I say be approved for, a goddam tummy tuck. No I was not a skinny mini before this all started however my hernias have really done a number on me. I’m so goddam mad that my body has been through so much that I’m scared I’m now falling in to a depression. I’ve never felt so down. As much as I’m an advocate and the joy it brings me in doing so, it’s just not enough. Perhaps I’m just feeling things a bit more than usual tonight as yesterday marked 9 months since surgery, I honestly don’t know.

I want oh so much to be the survivor who does amazing things but any time I start to feel that way I feel like I’m getting slapped in the face over & over again. I sit here and think what can I do to resolve this but it’s just not that easy.  I’m in constant discomfort and pain and just can’t seem to unlock the path to help me be that survivor. I hate life after cancer, it’s so much harder than life during cancer which is crazy to say. I’m at the point that I feel I need strict rules and regulations to see any sort of solution because without them I just don’t know how I’ll overcome this hurdle.

For 4 years I’ve been trying my best to be positive and to look on the bright side, but if I had a towel right now I’d toss it in the ring. I won’t give up because it’s not in my DNA, however I understand struggle like never before. Every single one of us has a limit...seems I’ve just hit mine. I’m done being strong so maybe it’s time to be angry and vengeful...I really don’t know but I got to figure this out.

People are worse off...this too shall pass...others have been through worse, all things I tell myself when I’m in a dark spot. As much as it has helped in the past it just isn’t this time.  I’ve been through extreme agony and it’s ok to acknowledge it. I begged for mercy after chemo & radiation. I’m sick of begging for mercy which is where I find myself physically today. It’s now affecting my psyche which hasn’t really happened before.

I’m left with this thought. Trains can be repaired after derailment right?  So how can I get myself repaired physically and emotionally because goddam I hate this space I’m in.  In saying all this I know I’m strong, that I’m a fighter and that I’ll conduct my train in killer cute overalls with a bold red lip. Just sucks I’ve had so many accidents along the way.  Choo-frickin-hoo.

XOXO

C

#carly2conquercancer
#winniethepouch

Ostomate and the City

Carrie, Miranda, Charlotte & Samantha are a cast of names you most likely know.  The TV show ‘Sex and the City’ first aired in 1998 when I was 23 years old and summed up in 2004. I didn’t watch it religiously straight away but later as I approached 30 I bought the DVD collection binging it for months. My late 20’s and early 30’s were spent living in Calgary as it was a booming young vibrant city in Canada at that time. My girlfriends and I were a lot like them although we didn’t wear Manolo Blahniks but we did hail yellow cabs!

I’ve been branching out on Instagram and YouTube with other cancer warriors and ostomates so decided I needed a fitting name. Most people I’ve discovered have the word ostomy, stoma or cancer in their handle and a name came to me after watching another feed. It just clicked...Ostomate and the City!  I haden’t thought of this show and it’s amaxing characters in quite some time but it just popped in to my thoughts.   How would these ladies handle being a 2 time cancer survivor and ostomate for life?  All I could think is that they’d own it. My YouTube and Instagram now carry this name. 

Latest happenings for me still involves waiting. I’m waiting to hear when I’ll have my final plastics surgery to smooth out the skin that replaced where my tumour once was. Still no word as to when my massive hernias will be surgically fixed and as a result of this fix my stoma will change. Fitting that just as I get Winnie stable I’ll have to go through all my bag fits and tricks to maintain bag longevity all over again. But honestly the changing stoma is the least of my worries as I’m so darn uncomfortable.  I’ve been going to the ostomy clinic on a weekly or bi-weekly basis since surgery nearly 9 months ago and my nurse now recommends I come in as needed.  I was elated to hear she felt I’m self sufficient enough and although I’ll miss seeing them on the regular, I walked out super happy.

I had a good cry on the phone with my brother that night even after such great news. Earlier that day I had a slight fall in the shower and once I settled in for the night my hernias were causing me a lot of pain. I took some pain pills and while changing in to my pjs saw my hernias in the mirror along with Winnie and my scar. I just started crying. Between the pain and the image I got rattled. I’m as upbeat as anyone can really be after so much pain and physical change, but it just all kinda sat on my shoulders at that moment looking in the mirror.  The next day I called my doctors office and was told the surgeons name whom I’ve been referred to for my hernias. Unfortunately I’m on a waiting list but I called and left a message saying I’m struggling and would like to be seen.  Maybe I’m being too calm and not really expressing to my doctors how bad I really feel. I’ve been in many worse medical situations that I probably hold my current state to a lower level. They’re huge. They need to go. 

Making acquaintances with others like me is really empowering and I’ve already had some great moments and feedback. Numerous people from all over the world have messaged me saying how they relate or how I’ve helped them. They too have helped me. Not one persons story is the exact same, however the end result oh so close.  Only those who live with cancer or an ostomy really comprehend so I need these people in my life to help me and my purpose. 

Carrie was a writer and this blog has now exceeded 99,000 views.  Vlogging is new to me and like to think she would have done the same had it been 2018. Miranda almost always single eventually settling down later in life which seems to be the way I’m headed. Charlotte always a great hostess and I love to entertain. Samantha survived breast cancer. Had she had vulvar cancer I jokingly say she probably would have ended her life ha ha ha.

From now on out I’m chanelling these 4 characters, or ladies, because they seem so real to me.  I need to think of what  they would wear, what would they say, what they would do a heck of a lot more. Although they’re fictional women they were strong and I related to them, still do.  Hopefully my name will relate to others and I’ll meet some more empowering women (and men) throughout  this next chapter. 

XOXO

C

#carly2conquercancer

#winniethepouch