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

Sleeping pills

Sleeping pills are great. They help you sleep...simple.  But clearly my Zopiclone isn’t quite doing it’s job as I’m awake and couldn’t stop thinking but to write a blog. I so miss writing but my medications are holding back some of my creative chops. They also are to blame for last blogs run on sentences and spelling errors Hahaha!

I’m more up and down with this recovery than Ricky Martins career. Today I woke up and within an hour found myself hysterically crying over this surgery, over my pain, cancer,....my life in general. I called for my mother like I would have at age 8 when I skinned my knee on the crosswalk playing jacks. I needed to be kissed better before I could carry on then & now. This time I texted her to hurry over whereas in the 80’s she just heard me from the kitchen table chatting on the phone wired to the wall. “Gotta go Sue, I can hear Carly crying away” she’d no doubt say. Today she walked in my apt, helped wipe my hysteria of tears and said it’ll all be ok. No bandaid today as my wounds different than 1983 but nonetheless she got me back up on my feet ready for the next jump. 

Today I went to the Ostomy Clinic in New West. If you’re reading this, live in Vancouver general area, this is the place to go for all ostimates. Each time I meet with my nurse we evaluate my stoma, my pains, my bag and even me if there’s time left over. I started with a different bag that constantly leaked and now my new Winnie stays on for up to 4 days thus far. This week we’re pushing for 5. I have all the tools and training to change at home should Winnie need refreshing before my Friday visit, but I quite enjoy my visits. Of course I’m new to this ostomy world so now I feel I can’t live without them, but over time I’ll find myself there for supplies and a hello as I’ll be coping with Winnie just fine. 

If you’ve ever been super sick you really see who’s there to help. And if you haven’t ever been really sick take some time to think about who you want and who you think will be there for you. I’m not saying your pal in Mozambique needs to move home, although that would be impressive, I mean more family and close friends. My parents have been so amazing I just need to tell you more. My dad is the AM Man!  He arrives at 8am, either waking me and Simba up, or joining our morning mugshot faces. He makes me breakfast usually a piece of toast followed by a tad of oatmeal. He collects garbage from around the house and scoops Simbas litre box. I can’t lift or bend so he’s stepped up in my place. Pretty sure dad will tell you he gets a kick outta Simba. He’s a 17 year old always hungry cat who’s rail thin. You see his hip bones but please know he’s over fed and just old with hyperthyroidism. He does have hearing loss but his sense of smell & eye sight bang on. He really is a special cat & we’ve loved our 17 years together and looks like more to come. 

I’ve seen some of you lately and still haven’t seen some others. Please know I welcome visits it just has to be planned. I’ve got home care nurses, wound care nurses & Dr appts so always work around those. I’ll tell you no if I’m overwhelmed and I’ll tell you yes if you can help get me overwhelmed lol. I’m going to be recovering a long while so don’t feel you have to flock over. I’d love help in my garden once it’s time to plant, and I’m getting pink flamingos for this years theme. Just been wanting them for some nutty reason, but I’ll do it right. All my plants will clearly need to match that vibe!  I can’t wait to see the outcome, I just love planting season. 

In this blogs opening paragraph I spoke of sleeping pills, and it’s now kickin my eye lids quite heavily. It’s time to rest. Time to recharge. Time to dream of tomorrow. Time to dream of the end of recovery. Time to dream of a beach vacation with my folks & Winnie. At least Winnie doesn’t need her own seat, she’s got me. I’ve got her. 💩 lol 

XOXO

C

#carly2conquercancer

#winniethepouch 

Tis me

Hello there my lovely friends, ‘Tis me & I’m  back to writtimg my blogs. A big thank you to Dawn for writing my updates when I was incapable of knowing my name let alone write a blog!  

Where to start, where to finish as this surgery journey has been insanely busy, intense, sad yet joyful. I awoke in recovery after 8.5 hours of surgery with mild recollection of seeing my folks. My room was ready sooner than expected so I was only in recovery for less than a day. Thank goodness for that as my dedicated nurse was awful. I was spoken to with disrespect and hardly helped so getting to my room around 6am was a blessing. I had called mom at 4am to please come so she was with me as I went to the 4th floor, the same floor as I was on in 2015. 

I had incredible pain that had me screaming for help, straight morphine injected in to my direct line to

help me cope but also hallucinating!  My stomach was swollen so much I couldn’t see the footboard nor my feet. Staples started right where your bra would sit all the way to my bikini line. They opened me up centre fold to do my hysterectomy, colostomy and once that was stapled up my lower vaginal plastic surgery. Instead of taking skin from my thigh it came from my stomach since it was so perfectly undamaged and soft. I like to boast about my nice skin for some silly reason lol 

Scans followed as blood clots are very common in lengthy surgeries and I did have some in my lungs. Every morning at 10:30 I inject myself in my thigh to help avoid any blood clot issues. You should see my bruises. Are purple legs in at the moment as well as purple arms?  Bloodwork nurses struggled daily as my veins were tiny so my mid arm is purple.  If so I could rock that runway tossing my hair to the side, my right side with no bruises has my nerve pain leg gets a free pass. Fold me up and it’s like a before & after lol 

I started to move & walk towards the end of my stay but it was no picnic. I had 4 drains coming out of my body so we had to clip them on my gown as I walked the halls with a walker. Once the drains were removed things were much easier and soon the walker wasn’t needed yet kept close by. I was discharged on Monday March 5th so have been home now just over a week. 

Life at home hasn’t been easy but we knew it wouldn’t be, but it’s been so nice to be home. Simba has caught on to the fact that I’m not well and is my shadow. I have daily nurse care and when they’re here he’s on the bed right beside me. He walks with me to the bathroom and always nearby when I’m sleeping. My skinny old boy shows me more love each day and with people always in & out helping,  he gets more treats as he knows how to work it. 

I’m walking really well but can’t bend or anything more than walk, lay down and sit as needed. I’ve made my couch in to a recovery heaven with pillows, warm bean bag & cozy blankets. I need no help to get in or out which is pretty amazing. I feel like I could do more but I can’t per orders. It’s so hard to have people doing stuff for you but at the same time it’s kinda nice not to have to fold my laundry!

My stomach is still very swollen, similar to a 4 month pregnancy and I apply BioOil daily to where my staples once were to hopefully avoid serious scarring. But if it does scar I’ll think of something be it tattoo work or just owning it. My story really is a great anatomy lesson so instead of talking babies I’ll talk of how my scar came to be. 

Winnie has been doing good in the fact that my bowels are moving in to her. I have however had some leaks so off to an ostomy clinic tomorrow to assess the bag I have now might not be the correct one. They’ll know and make Winnie whole again.  My daily wound care nurses have been fabulous and I also have a nurse every other day to help with bathing & any round house chores I may have. I’m very blesssed to have such great help from them, my parents and friends. I don’t think thank you cards can express my gratitude. From those of you who saw me in the early days a little cookoo to those of you who sent flowers, visited and helped at home. Y’all are wonderful people. THANK YOU to infinity and beyond!

I stood in front of my bathroom mirror yesterday and looked at it all. Winnie, the scars, the bruises, my hair so deserving of highlites and I smiled. It was not the reaction I thought I’d get but it was real. This is me now and I’m 110% ok with it. Once my stomach swelling goes down I’ll see how it’s really gonna be.    Me. ‘‘Tis me. ❤️

#carly2conquercancer

#winniethepouch

Update, March 1st

I finally went to see Carly today after being sick last week and working 16 hour days the last few.

I arrived about 9:30am, went into her room to find her sleeping.  I sat down quietly and played for a bit on my phone.  She wasn't sleeping much the first week out of surgery so I thought I shouldn't wake her.  It wasn't long before she noticed I was there.  We chatted, she showed Winnie to me and her scars.  Normally I am a bit squeamish but her strength is contagious and I took a look.  Things looked good. She does have an infection they are keeping an eye on that is on her tummy.  They had to undo some of her stitches to all the infection to get better. 

While I was there a wound care nurse also came in, repacked her infection and checked all of her different locations.  This nurse is making a care plan for when she goes home.  Someone will have to come to the house and check on the progress of her healing.

Today was a hard day for Carly.  There were many tears.  She is so grateful and thankful that she has made it through the worst part.  Today, she was mad, sad and fed up being in pain and in the hospital.  As a fellow cancer survivor, we wrestle with our emotions when we have these bad days.  Not wanting to be ungrateful....  knowing others have not made it this far - it takes a different type of toll on our minds.  I assured her it's ok to have all the feelings.  You can let them go unless you go through them.

The catheter is now out as well as all of the iv's.  She went for a CT scan today, she got up out of bed and walked to the porter in the hallway.  So proud of her!!  She is most likely being released on Saturday, she is in the process of getting things ready for her homecoming.  House is being cleaned tomorrow, she is getting some supplies she will need for home.  Carly is excited about being at home but also anxious about not having nurses around to help. 

Hopefully, the next update will the from her at home <3