Carly's Cancer Blog

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

Olga sent you a hug.
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I can relate to what you are saying. I’ve already decided that cancer returns for me that I won’t treat it. Like you, I have a colostomy which is not my major issue. I had so much radiation (the routine number for round one and when the cancer returned, or was never really gone, I agreed to five cyberknife treatments) I live with high levels of pain. I take a ridiculous amount of narcotics every day in order to function. My internist, who prescribes the pain killers is old. When he retires I doubt any new doc would prescribe these for me in the midst of this opioid crisis. I support you going to see a therapist and highly recommend EMDR. Google it and read about it. If you have any questions, just contact me. I’ll hopefully be able to answer any questions/concerns about how it works. Best to you in these tough times.
Regina thank you for your words. I truly hope you can get through your tough times too and that cancer doesn’t come back. We can be bah buddies! I’ve created an acct on Instagram called Ostomate and the City (spin from sex and the City) and have met so many amazing ppl this way. We all support each other since we all get it. If you’re on Instagram feel free to follow and join in the conversation. Lots of love your way!
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Choo choo

 

Meant to post this the other day...

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

 

 

Regina, Olga sent you a hug.
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Hi Sweetheart. Those GD hernias are really bringing you down, along with everything else. As much as everyone claims to love this holiday season, the truth is that it can go either way. It usually goes downward because it tends to magnify existing negative situations. Television, magazines, the 'net....all of them portray everyone as having the time of their lives and the truth is, about half of the Christian population will settle for "let's just get through this". The true meaning is the celebration of Jesus anyway. This said, I'm not implying that you feel this way because the holidays are upon us, but it sure isn't helping any. You have every right to be disgusted and angry. You're a beautiful young woman whose outward looks are surpassed only by your personality, which I think is near perfect. Have you had any word on the hernia surgery? And yeah, equal rights for ALL cancers and not just Breast (sorry Brca survivors, I mean no disrespect).
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Seeing my GP today in hopes to get some pressure on hernia referral repair. Been keeping busy these last few days with birthdays of family & friends which is good for the psyche but now my body aches lol. But gotta keep on trucking along right? Thanks for your amazing comment means a lot.
Marcia likes this comment
Oh Carly, it makes me so sad that you are having such a rough time of it. You have every right to be angry, to kick whatever is near you. Anger is an essential part of grief, and you have grief over what f...ing cancer has done to you and your body. You may have to just feel it, until it doesn't hurt so much. I'm glad you can vent to us, we understand completely and love you unconditionally.
Carly likes this comment
I kept very busy this weekend & will be again today so that’s helping a lot. Seeing my GP today to hopefully out some pressure on hernia repair. Thank you for the support!
I am so sorry you are having such trouble with pain. It is the unseen enemy of joy and happiness as it redirects your thoughts in ways nothing else does. You have a warrior spirit and I know you will get the help you need. My heart goes out to you during this fight.
Carly likes this comment
TY so much! See my GP today for my hernias and also have a therapy session at cancer agency which should help me vent! Thanks for the kind words & support.
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Vital Info

Posts

September 23, 2015

Vancouver, Canada

August 16, 1975

Cancer Info

Vulva Cancer

Vulva Cancer

July 4, 2014

Stage 3

3.1 - 4.0 cm

Yes

Change in my body

I'm stronger than I thought I was

Hyperbaric Oxygen treatment to help heal wound

BC Cancer Agency

February 16

Pain in vaginal area

I didn’t lose my hair.

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