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


Saturday, September 7, 2019

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




Monday, June 24, 2019

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 

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...