Early on in my first cancer battle, my cousin Jacqueline gifted me a jar or wishes/inspirational sayings. I saved every single paper she stuffed in the jar as I pulled them out on a daily basis for a smile or glimmer of hope. Now that I'm battling cancer for a 2nd time, I put all the wishes back in the jar and pulled one out. It read "focus on the future". What a perfect wish for this stage of round two.
My biopsy results came back and confirm cancer as imaging indicated, however no cancer in my groin. They might still remove a gland or two to ensure no future reoccurrence just to be certain. No sense to go as far as we are to rid me of this disease to have a small miss. I'll also have a hysterectomy but no biggie there as none of it works post radiation. My one perk of cancer is no more girl time, didn't get to be a size 2, but I'll take it! 😆
January 31st I'll meet with my cancer doctor to hear more information. I still don't know much in regards to Winnie's size, how she'll work, what kind of diet I'll need to follow and loads of other questions. After that appointment I'll head downtown to meet my plastic surgeon. I have no idea what this appointment will bring but do know it's two hours long so I'm sure I'll walk out of there with a clear understanding of what will happen February 16th. Yes, that's my surgery date, it's all so frickin real!
I've had some rough days coping with pain but just have to keep looking for my future like Jacqueline said in her note. I KNOW I'll be a better version of myself when this is all over, it's just going to be a bumpy ride. I'm trying to prepare as best I can and have reached out to my community seeking other Winnie people locally. I'm amazed of the support I've received from strangers thus far. 4 people are willing to share and teach me the colostomy ways. Of course my Carly brain starts spinning and I think of creating a local support group, but one thing at a time ha ha ha. There's not a lot of awareness on social media so hope to bring more awareness along my journey.
Going through cancer for a second time I'm seeing things slightly different. I'm still an optimistic person but I feel a lot more anger and emotion this round. This doesn't mean I'm destructive & depressed ripping down curtains while crying, lol, I guess it just means I'm a lot more realistic. Realistic of how I'll forever be changed physically, realistic of my pain coming down the yellow brick road & realistic of my challenges. Obviously I'm going to rock these realism's but it's darn scary, but oddly at the same time I'm excited to see what my future brings. A Winnie hashtag is in the works, something never used before, so send me your suggestions and be part of my future!
XOXO
C
#carly2conquercancer
Hey, I'm Carly! A 2x stage 3 Vulvar cancer survivor, an extremely rare type of gynaecological cancer. Colostomy surgery and more saved my life! You can follow me on instagram at ostomate_and_the _city or my personal carlyallen75 to see what I’m up to!
Wednesday, January 24, 2018
Thursday, January 18, 2018
Checklist
I love a good checklist. Not the kind on your phone but instead on real paper. I see it, I feel it, it's more real. I cross things off once they're done and keep it with me till it's complete. I use the same pen to write and fold it up keeping it in my pocket for easy access when I need to remember my next thing to do. My list is a smorgasbord of things from what groceries I need, bills to pay and appointments to attend. Yesterday I crossed off my second biopsy but still need some yogurt and cheese 😀
Tuesdays biopsy was a doozy. I was convinced I wouldn't take the epidural but after discussions with the doctors things changed. They explained the benefits which out weighed my fears and off we went. I shed some tears but with support I conquered. Bent over in to a nurses chest in the OR I felt the needle. I was also hooked up to an IV of sedation drugs so my pain was very much under control. I made it very clear I wanted to see nothing so a blanket was up and the sedation helped me relax. I don't remember much after I layed down. Waking up in recovery I was completely numb from my waist down. The nurse had a bag of ice she'd place in random spots but I didn't feel the cold. About an hour later and I could feel the cold ice and dad was there to take me home.
This was a really surreal day for me. When I initially got home I was fine but not long after I was a mess. Reality really sunk in. This is just a freckle of what's to come. I was overwhelmed. I was on the phone with my mom in tears and in walks my bestie Amber. She knew I was in rough shape from our texts so headed straight over. I love having her living so close to me instead of Calgary. Lipton soup and a shared smoothie dinner calmed me down and she helped clean up my wound from the epidural. Blood was under the bandage and some bruising but once cleaned up didn't look so scary. I was in bed by 10pm counting sheep.
Wednesdays biopsy was of my left groin. I've previously had the same procedure on my right so knew what to expect. This was a walk in the park in comparison as the only real ouch is the freezing. Sometimes you feel the needles wiggle by way of pressure, but it's really simple. I turn my head the other way and hope the doctor gets good samples and poof it's over. Yet again my dad picks me up and we enjoy an early dinner at Whitespot before heading home. I should hear results Friday or Monday which will determine my next steps. The colostomy surgery is booked for mid February but until all is certain I don't know much more than that.
So my checklist still has more things waiting to be crossed off and more things will also be added. A minimum two week hospital sleepover post surgery will no doubt add numerous things to do & things to get. Canucks toque to cover dirty hair ✔️ Trashy magazines ✔️Cute pjs ✔️, love and support ✔️✔️✔️✔️✔️✔️✔️
XOXO
C
#carly2conquercancer
Tuesdays biopsy was a doozy. I was convinced I wouldn't take the epidural but after discussions with the doctors things changed. They explained the benefits which out weighed my fears and off we went. I shed some tears but with support I conquered. Bent over in to a nurses chest in the OR I felt the needle. I was also hooked up to an IV of sedation drugs so my pain was very much under control. I made it very clear I wanted to see nothing so a blanket was up and the sedation helped me relax. I don't remember much after I layed down. Waking up in recovery I was completely numb from my waist down. The nurse had a bag of ice she'd place in random spots but I didn't feel the cold. About an hour later and I could feel the cold ice and dad was there to take me home.
This was a really surreal day for me. When I initially got home I was fine but not long after I was a mess. Reality really sunk in. This is just a freckle of what's to come. I was overwhelmed. I was on the phone with my mom in tears and in walks my bestie Amber. She knew I was in rough shape from our texts so headed straight over. I love having her living so close to me instead of Calgary. Lipton soup and a shared smoothie dinner calmed me down and she helped clean up my wound from the epidural. Blood was under the bandage and some bruising but once cleaned up didn't look so scary. I was in bed by 10pm counting sheep.
Wednesdays biopsy was of my left groin. I've previously had the same procedure on my right so knew what to expect. This was a walk in the park in comparison as the only real ouch is the freezing. Sometimes you feel the needles wiggle by way of pressure, but it's really simple. I turn my head the other way and hope the doctor gets good samples and poof it's over. Yet again my dad picks me up and we enjoy an early dinner at Whitespot before heading home. I should hear results Friday or Monday which will determine my next steps. The colostomy surgery is booked for mid February but until all is certain I don't know much more than that.
So my checklist still has more things waiting to be crossed off and more things will also be added. A minimum two week hospital sleepover post surgery will no doubt add numerous things to do & things to get. Canucks toque to cover dirty hair ✔️ Trashy magazines ✔️Cute pjs ✔️, love and support ✔️✔️✔️✔️✔️✔️✔️
XOXO
C
#carly2conquercancer
Monday, January 15, 2018
All aboard!
Illness journeys are like train rides. Multiple stops, long horizons, with possible changes due to lack of roadway or proper fuel. The whistle blows and you hear "all aboard!?" when it's time to choo choo on out.
My biopsy surgeries are this week and I hear the locomotive pulling in! My conductor (in this case my dad) will be driving me in & picking me up. Tuesday is biopsy #1 which I'll be sedated for, and Wednesday is an ultrasound biopsy for my left groin lymph node. By the end of the week I should know what is happening. Will my train stay on course or will it jump a track last minute?
In my head I know. I know a colostomy is coming. My pain & symptoms mirror round 1, but this time I got it figured out sooner since I knew what to expect. I've been on bedrest since late December, my bed way more comfy than a train car however, and my pain is somewhat under control. Never gone but not as debilitating as before.
I was supposed to go to an appointment with the anestheologist Friday but was in rough shape. I woke up expecting I'd be fine to drive myself in, had a bath but then boom! It was 930am and my appointment was for 11. For whatever reason my anxiety went off the charts. I was balling my eyes out, then my body revolted in other ways....I was a total mess. If you follow me on Instagram you probably saw the posted videos. I've never done a video before, but have seen so many courageous ones from others, that I did just that. It was like I had someone in the room with me and it helped. It also showed another side of illness, the side we often don't see. The doctor I was meant to meet with was amazing and called to review what we would have done in person.
The doctor was giving other sedation options to me including an epidural. I was pretty adimant I want complete sedation. Like common doc, I do not want to know or for that matter see anything you do to me! I've never once been awake or sedated awake, and don't want to start now. It's like they know I'm a veteran of these surgeries and want to give me a purple heart & I just want to see stars as I pass out! Pretty sure Carly's Train just choo choo'd a loud NO on that one!
Tonight dad and I are staying at a dear family friends home in the city to avoid the congested drive as admitting is 9am tomorrow. This way I'll wake up with less stress and be ready to board my train knowing it'll soon come to a stop one way or another. A straight forward track will show itself most likely by the end of the week. This girl is ready to be the conductor sooner than later.
XOXO
C
#carly2conquercancer
My biopsy surgeries are this week and I hear the locomotive pulling in! My conductor (in this case my dad) will be driving me in & picking me up. Tuesday is biopsy #1 which I'll be sedated for, and Wednesday is an ultrasound biopsy for my left groin lymph node. By the end of the week I should know what is happening. Will my train stay on course or will it jump a track last minute?
In my head I know. I know a colostomy is coming. My pain & symptoms mirror round 1, but this time I got it figured out sooner since I knew what to expect. I've been on bedrest since late December, my bed way more comfy than a train car however, and my pain is somewhat under control. Never gone but not as debilitating as before.
I was supposed to go to an appointment with the anestheologist Friday but was in rough shape. I woke up expecting I'd be fine to drive myself in, had a bath but then boom! It was 930am and my appointment was for 11. For whatever reason my anxiety went off the charts. I was balling my eyes out, then my body revolted in other ways....I was a total mess. If you follow me on Instagram you probably saw the posted videos. I've never done a video before, but have seen so many courageous ones from others, that I did just that. It was like I had someone in the room with me and it helped. It also showed another side of illness, the side we often don't see. The doctor I was meant to meet with was amazing and called to review what we would have done in person.
The doctor was giving other sedation options to me including an epidural. I was pretty adimant I want complete sedation. Like common doc, I do not want to know or for that matter see anything you do to me! I've never once been awake or sedated awake, and don't want to start now. It's like they know I'm a veteran of these surgeries and want to give me a purple heart & I just want to see stars as I pass out! Pretty sure Carly's Train just choo choo'd a loud NO on that one!
Tonight dad and I are staying at a dear family friends home in the city to avoid the congested drive as admitting is 9am tomorrow. This way I'll wake up with less stress and be ready to board my train knowing it'll soon come to a stop one way or another. A straight forward track will show itself most likely by the end of the week. This girl is ready to be the conductor sooner than later.
XOXO
C
#carly2conquercancer
Wednesday, January 3, 2018
Step by step
A cancer journey has more steps than a New Kids On The Block dance routine! Today I kinda feel like I took a few steps back but also forward at the same time.
I expected to hear in depth details on my upcoming surgery as a group of doctors met yesterday to discuss my case. I did hear some details but what I heard first was that they want to do one more extensive biopsy before progressing off the PET scan images. Short story, one more test before the colostomy.
Back steps are I just want things to improve. I want to do whatever it'll take to get me there and Winnie is just that. I hate being in agony all day, I want it to stop. Forward step is I know the doctors have my best interests at the forefront. I'll hear over the next couple days as to when my biopsy (day surgery as I'll have to be sedated) will be. Once those results come back we'll have a straight forward plan. No what ifs. Just a plan. This girl needs a plan.
Until then I'll continue to manage my pain the best I can. I meet with the pain management team at the Cancer Agency Friday to make sure I'm taking the most suitable meds. Being practically immobile is hard when your mind thinks you can do more. But I got to listen to my body and rest up.
My uncle said to me on Christmas Day to think like a professional athlete. Rest before the big game and once the big game is here, go out and win. That is my dance routine for now, step by step oh baby🎶 -NKOTB
XOXO
C
#carly2conquercancer
I expected to hear in depth details on my upcoming surgery as a group of doctors met yesterday to discuss my case. I did hear some details but what I heard first was that they want to do one more extensive biopsy before progressing off the PET scan images. Short story, one more test before the colostomy.
Back steps are I just want things to improve. I want to do whatever it'll take to get me there and Winnie is just that. I hate being in agony all day, I want it to stop. Forward step is I know the doctors have my best interests at the forefront. I'll hear over the next couple days as to when my biopsy (day surgery as I'll have to be sedated) will be. Once those results come back we'll have a straight forward plan. No what ifs. Just a plan. This girl needs a plan.
Until then I'll continue to manage my pain the best I can. I meet with the pain management team at the Cancer Agency Friday to make sure I'm taking the most suitable meds. Being practically immobile is hard when your mind thinks you can do more. But I got to listen to my body and rest up.
My uncle said to me on Christmas Day to think like a professional athlete. Rest before the big game and once the big game is here, go out and win. That is my dance routine for now, step by step oh baby🎶 -NKOTB
XOXO
C
#carly2conquercancer
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