Seasons

West Coast living sees many seasons. We had a great start of warm weather in May which led us in to a spectacular summer.  Just last week the sun was shining and a debate to go to the beach or not was upon me.  Fall is now in full swing with multicoloured tree leaves, the rain pounding the pavement with sounds of raindrops falling down my window. 

My life is similar to the weather...sometimes I spring forward and other times I fall back. I’m nearing 8 months since my surgery that ridded me of my cancer for a second time and of course the beginning  of my life with Winnie. I’ve had some bright sunny days and some gloomy stormy ones too. I follow a lot of other ostomates on social media and see that no forecast is the same, that I’m not alone and that big picture I’m doing pretty good. 

My massive hernias are like a hurricane that touched down, made its damage and takes time to recover from. Still have no date for repair but my doctor has submitted my referral and I’m hoping a call comes sooner than later.  I’m starting to exercise in the only way permitted but one I love, the pool.  I attended my first deep water Aqua Fit class last week and did surprisingly well. My right arm was sore the next day from pushing the water side to side, up and down. Hernias did fine. Winnie did great, she loves the water just as much as I do.

My ostomy nurse has told me that my stoma will change post hernia surgery so yet again I’ll have to find my perfect bag fit. I’ve been fairly consistent of late with Coloplast bag 16757 (sounds like a jail number lol) but my skin around my stoma struggles. I have a more innie stoma than most other ostomates with outties. So this means my stool doesn’t fall down in to its bag but instead stays up falling slowly. I’m very self aware and pat it down as needed but it irritates my skin even with all the tricks my nurse has taught me. Lately I’m sore and when I remove the bag to clean and apply a new one I’ve got blood from cracked skin. You can’t just not put anything back on so regular changes are on my radar. I’m lucky though that I don’t have many leaks which I know is a huge struggle for lots of ostomates.

I still like to stay home more than not and find myself cooking a lot more than I used to. Living alone there’s always 1-2 friends over as taste testers and I like that.  You’ll often find me in PJs or lounge wear as it’s just way more comfortable.  When you have hernias like I do wearing tights really gives its name a run for its money! 😆 I go to my friends birthdays but I’m usually the first to leave.  It’s all about balance really and the days that I push myself too much I pay for.  One all day fun day usually means double the time to recover. 

Where I’m at in recovery right now isn’t a bad place. I’m in the middle. I’m able to go to hockey games (wink to my loved ones with tickets) but the next day I just take it easy. Simple. Choose my battles. I’m going out dancing for a friends birthday this Friday but won’t be doing any leg kicks!  One big win is that the reintroduction of veggies seems good so far. I still need to avoid roughage to some degree but all around doing pretty good. I see my plastic surgeon in a couple weeks but still have some healing from where my tumour was, and most likely a small surgery to finish where the skin flap was attached. I need to avoid stress when I can because Winnie seems to act up if I don’t. 

My adorable 17 year old ginger cat Simba continues to thrive although his hearing is gone and he’s skinny from his thyroid condition.  He meows for wet food to the point of frustration on my part but he knows I’ll cave!  I find it funny how vocal he is when he can’t hear himself ... ha ha ha!  He does feel vibrations like the door slamming shut and I can’t imagine going through all this without him. Pets are such comfort and he always knows when I need him most. He’s laying beside me right now as I compose this entry. My sweet little Sim. 🐱 

Like a change of a season or of the weather Winnie and I continue to forge our path. I’m so grateful for what independence and strength she’s brought in to my life.  Hopefully by this time next year I’ll be done falling and sprung back with even more purpose and vengeance.  Stay warm if you're in for a cold fall and winter season and remember a cute scarf always gives your outfit that extra light!

XOXO

C

#carly2conquercancer

#winniethepouch

Challenge

I woke up yesterday and must have had some sort of empowering dream, as I had an incredible urge to make my bed. This may sound silly so let me explain. I RARELY make my bed. I’ve heard many times that making your bed each morning helps you get a good start to your day.  Add in some breakfast and it’s like you’re a superhero ready to tackle the world!  I’m pretty good at eating cereal every monrjng, but the making of the bed is a big fail. This must be why I’m not a superhero lol 

With this urge then came forth the thought to challenge myself in small to large ways. Making my bed is not physically difficult, (although I do have a king size bed so it takes a few rips around to tuck ‘er in good), but nonetheless easily accomplished. So how can I use this idea to help myself moving forward.  This recovery has shown me many speed bumps in what I can and cannot do and it’s become very frustrating.  

I just celebrated my 43rd birthday and it also marked Winnie being 6 months old. In general Winnie is doing great, ask me about the 43 part and that’s a different story. I never imagined I’d be a 2 time cancer survivor living with an ostomy but it’s my vibe, my jam, my journey. I’m very accepting of it all and think that’s the only reason I’ve remained positive along the way. I attended a support group for Ostomates a couple months back and listened to others stories. I held back tears as one gent explained how he just can’t accept his fate and how he hates it. I just wanted to give him a hug. If we hated things about ourselves be it an ostomy pouch, our freckles, hair...whatever, how sad would we always be?  Clearly his situation is more complicated than a bad hair cut, but dwelling can take you down such a slippery slope. As much as I, he, we hate situations or things it can always be worse and find myself telling me that every single day. 

Had I just had the colostomy surgery I’d probably be doing a lot better by now, my biggest road block is the reconstruction from where my tumour was and these annoying hernias that are constantly in my way. The one hernia is so big and hard it makes it difficult to move be it walking or just rolling out of bed. The reconstruction has left me with uncomfortable sitting, bleeding and pain. I meet with my doctors in September and October to hear next steps. From what we spoke of last time I’ll need a surgery to fix the skin flap. What this surgery will be exactly is TBA, but I can’t wait to not hurt when I sit. I can’t wait to not bleed from too much friction in the area. If they fix the hernias at the same time I’m not sure, I just want my previous belly roll back. Like who says that! 😆 

This summer I’ve been doing as much as I can physically, usually just chilling at the beach because that takes no effort and I have an amazing chair!  I attended my friends wedding and even got in an inflatable kayak. That kayak was so comfy I could have slept in it!  I guess I’ve been challenging myself longer than I realized now that I’m thinking about it, so does that mean I don’t have to sort the large pile of clothes on my floor?  That’s a hard no, keep challenging Carly and hang up those clothes!

 XOXO

C

#carly2conquercancer

#winniethepouch 

Control

The top definition per Google of the word control is as follows: the power to influence or direct people’s behaviour or the course of events. I feel a lack of control on a daily basis and just wanna scream! But after reading this definition maybe I need to tweek my thoughts a little differently.  

First off I’m lucky to be alive and do as much as I can to feel alive. I’m out socially in environments that fit my stage of recovery, I mail simple birthday cards to stay connected with others, I show up on time to doctor appointments and I take care of my 17 year old cat. These are things I CAN control. 

What I CAN’T control are these 2 darn hernias that apply constant pressure on my stomach.  I can’t control my sore back which is now compensating for these hernias. I can’t control skin irritation & bleeding to my stoma from a bag that my skin seemed to be allergic to. I can’t do any heavy lifting, no real physical activity is yet to be allowed. And worst of all, I CAN’T control how soon a surgery that will take them away will come. Harriette (hernias nickname) is driving me 🍌 bananas 🍌 and I hear Gwen Stefani singing it each time I think it. If you don’t know the song just google or iTunes it. 🎶 B-A-N-A-N-A-S 🎶

The healing process is different. That’s more of a frustration. Like last week while out for a lovely dinner for my aunt & uncles birthdays. I made it to the end of dinner but couldn’t stay more than that. The chairs were just not my pal. Lovely chairs but too hard for me at this time. I’ll take a selfie with this chair when I conquer it next year ha ha ha. I was sad tho. My dad drove me home and I shed some tears. Why couldn’t I make it thru. Why did I have to miss the speeches of some of the most amazing people in my life. He was awesome at handling this moment & reminded me I’m doing great. I’ve come a long way as I approach the 5 month mark, and he’s 100% right, but it’s still so frustrating not to have control. I did however control my dress which seemed to be a hit. I bought an inexpensive oversized blue & white polka dot long sleeved dress from H&M. Then took it to a tailor to sinch the waist & make it short sleeved. A Winnie friendly & stylishoutfit was born. A tailor should be everyone’s bff!

I can’t watch videos of cancer people hanging from a rock with one arm saying how strong they are post cancer. I also call bullshit!  Most of us who undergo cancer don’t bounce back quickly, nor are we the same, but we do have a better understanding and appreciation of life.  No cancer is the same & I’m glad they won, I just think it’s portraying cancer in a wrong way as a whole. And maybe I’m just jealous if I’m being honest. I want so much to do more and just can’t. However it won’t be forever and what I do now is what counts in the now.

Now let’s conclude by interpreting that definition slightly different. Here I am writing my version which could be called influence as I share with you my struggle and my reality. Guess I just had control of your attention to read this blog, my course of events, which is amazing and I thank you 🙏 

#carly2conquercancer
#winniethepouch

❌⭕️❌⭕️

C

Harriette

Can you believe it’s been 4 months since surgery? I remember thinking 4 months would feel like 4 years and now here we are. This journey is as windy as my intestines on the inside yet so obvious like Winnie on the outside. I’ve sure come to know my body differently and pay more attention to it too.  In saying that I noticed a large hump like bump on my ride side so had a visit with my GP to find out more. As I suspected from some Dr Google type research I have a hernia, she’s a pain in my right side and have jokingly named her Harriette. 

I’m often asked why I name everything from my car to my colostomy bag and now my hernia. It never really dawned on me till today. I used to think it was just a funny thing I did but it’s more than that. It’s things I cherish or live with. We name our kids, our pets so why not our car?  My car is white and from Alberta so found the name Snowflake quite suitable.  Winnie took her name from Pooh but we changed it to 💩 poo and then to pouch. Winnie the Pouch. A hernia is annoying and I don’t know any Harriettes so won’t offend anyone, yet imagine she might have annoyed me at the age of 6 playing in a park. It also just gives me a smile thinking up these funny names. When times are sad or tough, a smile can sure change things. Do what you can to get that smile 😃.

As much as my smiles come around I also have some sad tough days. I felt like I was just reaching a point where I could do more physically and now Harriette shows up....told you she was annoying!  My GP advised we won’t be having surgery for a while as I’ve been through too much so will have to live with her for a bit. Hernias are common to happen post abdominal surgery but nevertheless a total roadblock in my recovery.   

I’ve been in contact with Ostomy Canada and they’ve asked me to submit an article by September which will be published in their next issue!  How exciting is this as I’ve always said I want to be a part of awareness and change. As of 2016 an approximate number of 90,000 Canadians live productive lives with an ostomy, we just go about things a little differently at times. If you go to www.ostomycanada.ca you’ll see that it’s run by volunteers. If you feel you’d like to help a cause close to my heart (obviously) please take a look. Donations fund Ostomy Canada and no amount too small.  

I can’t wait to see where I’ll be in another 4 months. I’m hoping my swelling will be less and my hernia gone, maybe even a trip to the desert 🌵 with some gal pals. Most likely one more surgery by years end to finish “fixing” where they removed the tumour and had to reconstruct. Once that’s done I’ll be able to sit better which is my biggest struggle. I really want to ride my bike Mango but it’s not very comfy to say the least.  No biggie as she’s safe all locked up and maybe in 4 months we’ll ride again, just might be in the rain but I’ll be so happy I won’t care one bit!

XOXO

C

#carly2conquercancer
#winniethepouch

Appearance vs Reality

When you visualize what a cold looks like you’d probably envision runny eyes ‘n nose, Kleenex on the floor and most likely stay away from the person fighting off the cold. So what do you think of when you think of cancer? If we polled 10 people we’d probably hear words like hair loss, skinny, death...maybe cancer free. What I’ve learned & writing about today, is that appearance isn’t reality. 

When I was first diagnosed I was like many people and misinformed about cancer. What cancer looked like and what it actually was weren’t one thing or one look but instead many. I’ve been told numerous times I couldn’t have cancer because I had hair and no extreme weight loss. It’s not that people didn’t support or believe me, but they like me, had the general appearance on the brain. I’ve replied to these conversations saying how I too wish I’d lost my hair. Wait what? Yup. You heard me. When you look “ok” how are you supposed to see how far you’ve come?  My end of treatment photo looks more like I had a hangover from a wild Saturday night vs a beautiful side by side shot taken 6 plus months apart. My cancer scars weren’t visible but instead disguised by clothing. This time round I’m posting pics from my colostomy surgery.  My face never got a side by side but darn it my stomach scar will!  Sorry I can’t post the other things done to me, my blog would have a R rating! 😉 

Because of this I sometimes struggle to leave my home. I struggle if I look too good but really it’s just that I take a decent photograph & applied a face of makeup. Every time I’m at the Cancer Agency I see my thick file and think wow you’ve been through so much. I’ve felt pain like nobody should and I’m forever changed in so many ways, although some ways for the better. Cancer teaches you so many lessons about strength, love and vanity to name a few. 

A few days ago I decided to ride my bike. Please know it was just circles around my neighbourhood and nothing overly extreme. I was hardly comfortable but gosh I was happy. Happy to be doing something I took for granted but really enjoyed. My bikes name is Mango and I swear she spoke to me and said “good to see you” as air was inflated back in to her tires. Because I had plastic surgery where my tumour was removed (vulva near my sphincter) that was where I felt the most pain. I’ll have another surgery in 6 months or so to sort that out so I’ll be better able to ride thereafter. For now any future bike rides remain closer to home or maybe I need to invent a cool plushly padded oversized bike seat!  If you look at my photos linked to this blog you can see me sitting on my bike with a huge smile on my face. As Charlie Sheen would say “winning!”

My appearance may seem that of a “normal” gal but not quite. I’m still not going out with my friends for more than lunch or car rides but to me that’s a huge win. I’d like to hit up a movie theatre next as those seats are much more comfortable than Mango. Amy Schumer’s new movie called ‘I feel pretty’ seems hilarious and probably quite suitable for where I’m at.  It’s ok to feel pretty when going through cancer and not let it take that away from you too. Doesn’t happen every day but makeup is one thing I’ll beat cancer at every time. That’s appearance. Unlike the common cold cancer brings people together in various moments....like now you reading this blog. That’s reality. 

XOXO

C

#carly2conquercancer
#winniethepouch 

Insomnia

I’ve always heard of people struggling with insomnia or sleep deprivation but never struggled myself so couldn’t relate. FFW to today and boy do I know how real the struggle is. I’m writing this blog with tears rolling down my cheeks from total exhaustion. This is not how I thought crying myself to sleep would go. Nothing seems to help in short periods, but instead hours. My good ol reliable sleeping pill Zopiclone isn’t even doing the trick. I realized I haven’t written in nearly a month and I usually write late so here we are. Long overdue sleep & long overdue writing may do the trick, but hopefully just to me and not you!

As my healing journey continues some days I’m up and others I’m down. The up days can be the hardest though, as they trick you in to thinking you can do more.  Uncle Pete's service was last week and hands down the biggest outing yet physically and emotionally since leaving the hospital. Clearly not the reason why I wanted to be out & catching up with loved ones, but I owned it. I dressed to impress as that’s exactly what P would have done for me.  I didn’t want to take away from the man who gave so much, so I medicated myself more than usual knowing I’d be up/down/sitting/crying...the list continues. I wore a dress that hid Winnie and my swelling, using my cane only in certain situations. It was a perfect goodbye but I’m reminded of him daily with one of his creations in my room & a bracelet I wear often. He will be missed by many, but how proud he must be of his legacy. 

A long time back I spoke of struggling to know what legacy I’d leave behind. To not have become a mother which is most women’s way of leaving legacy, however not mine.  Firstly how cute would they had been pending the mythical fathers genetics. Where is he anyway, like showup anytime now lol . A girl would have been named Marnie Monica Nita after all my grans ‘n nans. And Fraser Norman Grant honouring my pops, grandfather & my dad. I never froze my eggs during cancer because I accepted what was showing itself. Infertility & maturity. Had I done so they’d still be waiting since I’m on round 2. Ain’t no way I say yay at 50. So instead my future fur babies will get the honours and birth announcement as we deserve to make the fridge like you did mine. A photo shows joy for a new buddy be it human or fur. Simba seems to want to live forever so could be a while yet till you get my latest post in mail!  I don’t weep at not being a mother but I do think about not carrying on some history on the tree. Common Shane pucker up, just don't steal my names! But how do I look at legacy not involving DNA?  That is my next thing to sort out and I’m hoping it’ll be via ostomy awareness which really is a cool anatomy lesson. 

Parts of my old life like driving my car, are starting again. I’ve been cleared to go for walks but still no heavy lifting or any form of struggle I can’t take physically or emotionally. It’s hard to have been on mostly bed rest up till now. It’s time to start with walks. A little longer each time to help my physical healing. My GI ordered blood work to make sure my Crohn’s is being treated properly and showed some low vitamin levels such as B12 so I’ll be adding supplements to my routine. 

Plastics will see me again next month but all seems to be healing as predicted. Another minor surgery in 6 months or so to finish it all up. Overall my swelling has started to go down again as it was stagnant for a while. Wearing socks left marks, my ankles more like kankles!  We’re sorting out meds which may have played a role. Healing has so many hills I never really expected it to be so hard. Saying you have a long road ahead is a lot easier than living it but I’m doing my best. 

Full disclosure I fell asleep writing this around paragraph 3 but woke up early to finish. I’m still tired but no sense sleeping now and struggling again tonight. Instead I think I’ll give Winnie her first bath, mop my floors and head out for a walk this afternoon. Sounds like a few steps (literally) in the right direction. 

 XOXO

C

#carly2conquercancer
#winniethepouch

Phases

What’s a phase to you? Perhaps fashion, hair or even friends? Up until 2014 I had phases similar to these. My Madonna inspired short cut (not a good phase FYI). I lived in a house with 4 girls, where all we drank was Molson Dry. I’m not a beer gal but that was one heck of a Xmas party. We mailed out invites, yes kids, no email in 1998!  My fashion love phase has grown stronger but currently on hiatus. 

These last 4 years have brought on 2 cancer battles so my phases were now about chemo, radiation, surgery and recovery. Then after the recovery phase seemed to end in 2016, it brought a year of dancing at my local pub, working even though I struggled, along with great new friends in a new community. 

This 2nd recovery phase has been tough, even if you know you’ll improve week by week. Surgery-hospital-home. There’s the learning on how to walk again, how to seem sane on medications, (I posted Instagram videos high at weird times lol) & learning how to manage your colostomy. The plastics phase has yet to reveal itself, bit early still. 

Now that my 18 day hospital stay is over, I’ve been in my home phase for just shy of a month. Unreal to know I could hardly stand when I came home, and now I shimmy out of my couch with no help needed. I’ve got the emptying of my colostomy bag Winnie down to 5 strips of TP with which I clean it. I recently started standing in my shower no longer requiring a bench and nurse. I still can’t bend or be on my feet for extended amounts of time. So this phase annoyingly makes me ask you for help. Help putting on my socks and shoes. I need you to be in my home while I shower just in case I fall. I need you to prep me food so it’s easy for me to warm it up. I need you to help scoop Simbas kitty box (Ew! sorry lol). It’s so great to be at these points but I’ve got so much more to follow. The bending phase is coming then y’all are off the hook! 

My swelling is getting less every week it’s just taking time. When it’s over, Winnie and I will be able to sit up straight for an entire meal and join you in a restaurant. Oh the little phases we take for granted. I’ve really looked at things by phases so I don’t jump too far ahead. If I don’t keep it real and do the work, I won’t get there. And if I’m being completely honest I have zero clue of what “there” is...TBD.  One thing I have learned through my phases thus far, Winnie is the best thing to ever happen to me. I’m starting to feel like the real me in so many ways. This is my best phase yet!

On a serious personal note....

A dear man known to me as Uncle Petey passed away recently. I’d like you to know he was talented with many things including welding. For my 21st birthday he created me what we called ‘Mannequin Man’ but really it’s a structure to toss clothes on after they’re worn. Thanks uncle Petey for this gift over 20 years ago....it’s always used as an excuse not to hang something!  I see you everyday in your creation and remember you always.  #foreveryoung

XOXO

C

#carly2conquercancer

#winniethepouch