Tuesday 16 February 2016

Nobody Said It Would Be Easy.

The first time I heard I had to have a gastrectomy, I was skeptical. Never being seriously ill before it was hard to wrap my head around the fact that I would have to have my stomach removed. I didn't really believe it would happen at the time.
*Remove my stomach? Yeah, right. Can they even do that? This guy is nuts.* Just some of the thoughts that went through my head that day.
But of course eventually I realized that it was inevitable and yes, they can definitely remove your entire stomach just fine and send you on your (not so) merry way. I slowly came out of my fog of denial and took comfort in the fact that at least it wouldn't be happening for about 3 months.

As we all know, when you have cancer a lot of the time a major surgery is involved. And it doesn't matter what type of surgery- they're all a big deal and they all come with a mess of emotions: fear, anticipation, anxiety, curiosity, HOPE, relief... You have your clinical where you're prepped for what life will be like when you wake up. The funny thing is nothing can really prepare you for it. It doesn't matter how many times your doctor talks to you about it or what you read about it, mentally it's one of the most difficult adjustments in these crazy cancer journeys. We're cut open and rearranged, pieces of us taken away, and closed back up. Then we're sent home to learn our bodies all over again, all the while struggling to be the same person we were before.

I had a thoracic surgeon who was a little on the blunt side, but overall nice. I had been warned from the beginning by many people that surgeons are notorious for not having a great bedside manner. So I wasn't expecting to meet my new best friend by any means. Luckily for me I liked him just fine- and he was an excellent surgeon, recommended by many... isn't that what really matters?
In the end we decided a partial gastrectomy was what I would have and more of an esophagectomy. They would leave me with a little bit of stomach which meant adjusting afterwards would be a little bit easier. You know, quality of life and all that.

When the big day came I felt just about every emotion I could possibly feel. I was afraid. Afraid of the pain afterwards, afraid something would go wrong, afraid I simply wouldn't be able to do THIS in all its entirety. I was sad I would be back in the hospital for another 2 weeks or longer, after just getting out. I missed my children so much at that point. Being away from them for a month prior to surgery they had gotten used to me not being around. When I was finally home, they wouldn't come to me when they needed something. My toddler, to young to understand any of this, played strange with me. All very understandable with children but the last thing I wanted was to be away from them again.
Besides fear and sadness, I felt hopeful and even excited to a point. I was hopeful this surgery would mean so much in terms of curative and excited to just get it over with. I was curious about what it would be like with less than half a stomach and how I would adjust, So, completely overwhelmed by these feelings, I said goodbye and let the nurse take me away.

Almost five hours later, I was woken up. I had three chest tubes, an epidural, a feeding tube, bladder catheter, a central line out of my neck, and the most fun of all- a nasogastric tube! A lovely device that goes through the nose, down the throat, and into the stomach to (in my case) remove acid while my insides healed. To have a tube sitting at the back of your throat constantly triggering your gag reflex is not a fun ordeal, to say the least. I had two incisions, a crescent shape one on my back and a long one down my stomach, closed up with staples. Both were painful, of course, but the pain caused by the chest incision was pain I had never dreamt of experiencing. I quickly decided I would rather give birth again than to have to deal with this type of pain. It immobilised me to the point nurses had to move me on sheets and I just simply couldn't move in anyway without excruciating pain. No amount of pain meds seemed to help either. I spent the first few days whining a lot to my nurses and feeling sorry for myself, not even wanting to see Aaron (who never missed a day visiting me!) but as the days passed my mood slowly improved, despite all the tubing, not being able to move, or even take a sip of water. The amount of support and well wishes from friends and family lifted my spirits and reminded me why this was happening. I had an angry tumour that had needed to go and this was an inevitable process. I just had to deal with it whether I wanted to or not. Slowly the tubing was pulled (nothing like pulling a thick tube out of your chest! Warm and slimy are the words I would use to describe it) and I was re-introduced to liquids and soft food (mmm, hospital pudding and egg salad. And so many Ensures... so many) and eventually sent home to be with my family again. And wow, was I so ready to get home. Of course it was hard dealing at home but lots of snuggles and Disney movies in bed with the kids made it much easier cope.

So what's it like to only have a tiny bit of stomach? Well, it's interesting at least! Now I eat 6-8 small meals a day, which is tedious, but gives me the chance to try and munch every 2-3 hours. As a busy mom of 3, this doesn't happen as often as it should. The first month was the most difficult due to dumping syndrome. Undigested food passing too quickly into the intestine causes you to run as fast as possible to the bathroom. It's not easy to absorb nutrients when that's happening so it's a constant struggle that way to heal smoothly and to not lose weight.
You basically learn to eat again. Portion sizes, not drinking while eating, and learning to space your meals accordingly. It's a challenge but it does get easier with time. Three months out of surgery and I can pretty much eat what I like and I've learned to find the humour in it. Eating out is now a lot cheaper for us as I'll usually order off of the kids menu or share with my husband. I still struggle with portion sizes sometimes, but again- it's a learning process. I've stopped losing weight, which is great and I'm always looking for ideas for great little portable snacks. I also discovered only half a glass of wine will get me good and buzzed. I find that amusing and a tad disappointing, haha.
At one point I was mortified at the idea of losing my stomach. Now I see that it isn't all that terrible... Stomachs really are overrated. ;)

One of the things I've learned from this part of my journey is to really be kind to myself. I never thought I would ever experience anything like this and it's absolutely understandable to not feel brave all the time. It's normal to feel angry and to feel scared. It's also expected that you're not always going to adjust as well as you would of hoped. I can't describe the frustration and impatience I felt after 2 months post surgery and I still hardly had the energy to climb the stairs or walk down the road. I felt at that point I should of been much farther ahead than I was. But eventually my strength did come back and I realize now I should of been easier on myself.
You also might hate your scars and hate the way your body feels after going through something so life changing. But that's okay. Time is healing. You will learn to love yourself again. And love so much more and deeper than ever before.
We have really been through so much, physically and mentally, it's amazing how the human body and mind can persevere. I have more respect and love for myself now than I did before and a deeper appreciation for others and their battles. I'm amazed everyday at what others endure and how they cope.

I hope others going through difficult times of their own will read this and know they aren't alone and to not be ashamed of any feelings they have. Embrace it all!  Love yourselves and be proud of yourselves for how far you've come and how far you will go. It's been said over and over by many people- but it does get better.

















2 comments:

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  2. Wow Mallory your blog is fantastic!! You have such a way with words and you describe the experiences so vividly! Your words resonate deeply with me of course as we are #Esophagectomybuddies. Everyone's journey is unique and their own but when you have the same ailment and surgery the experiences come together in many places. I admire your strength very much. Being a mom is a job like no other it's an interesting schedule of 7 on and 7 on. To do that while going through what I KNOW you went through is amazing and at your young age shows a depth of character that is simply outstanding. I smiled when you described getting over the Thoracotomy, (Rear incision into the chest cavity.). I can second that observation completely. It is commonly referred to as the most painful incision you can have. I remember my surgeon telling me just before I went in. "We don't give hero medals in here. There are no awards for taking pain. When you start to feel the pain getting worse ask for more drugs immediately", he wasn't kidding!! Reading your description reminded me of about 3 or 4 days after surgery. Mr have to learn the hard way here decided without telling anyone that is was time for me to get off the pain meds. Well that didn't at all go like I saw it in my head. When the pain in my back started its scheduled 4 hour escalation I decided I was going to ignore it this time. I was going to make a run for that hero medal. Not only did I not get the hero medal within 15 minutes I think I was in the running for the chicken feather. What I realized after when thinking about it clearly, (as clearly as morphine would allow), is that everyone is usually familiar with the pain of tweaking the Latissimus muscle in our backs. That sharp stabbing pain that completely takes your breath away when you try and breath deep. Well this incision completely cuts that very muscle in two pieces. So imagine you didn't just give it a microscopic tear or strain. Imagine for a moment you tore it completely in half. This realization was like a lightbulb for me and explained to me why after 15 minutes I was taking tiny little sips of air at a rate of about 3 a second to try and not suffocate. Each one created the lovely feeling of a samurai sword stabbing me right where my incision was. All while trying to frantically signal the nurse with my hands in what I suspect was the sign language equivalent of screaming, " GET ME ALL YOUR DAMN DRUGS NOW, EVERYTHING, GIVE ME EVERYTHING YOU'VE GOT!!". Certainly not my finest hour by no means but now a year later a funny anecdote and a further example of the injury you sustained.

    Oh sorry I deleted the first post and re-posted to fix a few typo's that I didn't catch in editing. I am not nearly the writer you are.


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