Suzanne Carillo

That’s right.

Two weeks.

I ended up staying another two days in hospital before I was released.

The last two days were substantially less chaotic and dramatic than the first 24 hours. Thank God!

I was given a private room during the last 18 hours I was in the hospital. It had a door and even my own toilet! It felt like I’d been upgraded to the best suite The Ritz has to offer.

Thanks to a little blue pill called Imovane I managed to have a good sleep that last night filled with wonderful vivid dreams. There were fluffy pug puppies, skiing on the grass in the summer and huge white tame owls to be petted. I was even in a Off Broadway dance show at one point. I wanted to stay in those delightful dreams forever.

I’ve been home for almost a week now trying my best to recover.

I’d like to tell you that I’m doing better, I’m healing well…

but I don’t feel that way.

For eleven days now I’ve had a new bag. But I won’t be posting any photos of myself modeling it with some funky boyfriend jeans and a trendy peplum top.

It’s a bag of urine strapped to my leg. It is with me day and night. It requires maintenance. I am constantly taking care of my tubes and bags. It is a nightmare.

It makes me sick.

Physically sick.

For the past few days my lower stomach has started to cause me pain again. Yesterday it was severe. My stomach is a blue/red colour. It’s been that way since the surgery.

I can’t sit for more than 20 minutes at a time. I’m not eating because it hurts my stomach more.

I’m not taking any pain killers because I’m scared how they affect other parts of my body.

I haven’t left the house since I came home from the hospital other than a few short walks with my dog. The bag can’t be trusted. I had to walk home a few days back holding it up with my one hand the whole way. I haven’t gone outside since then.

Since I started getting new pains again I can feel my optimism slipping away. I don’t want to end up back where I was.

The fear has climbed up through my body, threatening to spill out of my mouth should I open it.

More than anything I want this to be over.

….update

I saw my urologist late this afternoon.

After much debate my bag and catheter are gone. Hallelujah! Raise the roof!

I may have an infection where my pain is coming from. I have been given new meds to see if that helps.

I will have an ultra sound hopefully next week to make sure nothing else in my lower abdomen looks infected.

I have been scheduled for a scope or cystoscopy. Not looking forward to this.

They insert a camera into my bladder, fill the bladder with liquid and then see if it has properly healed. This is the only way other than another CT scan to see if I am still leaking. CT scans are like having 40 x-rays, scopes are less damaging to the body.

Removing the catheter today despite my pain, swelling and redness is a bit risky, but I really wanted it gone. If it turns out I am still leaking from my bladder or my infection gets worse I will have to go back to the ER for treatment and then have bladder surgery. This time I have been told to go to a different hosptial that hopefully doesn’t have the same issues as the last one. Please, please body heal! I don’t want to go back to the ER!

I should know if I still have a hole in my bladder in the next 48-56 hours or so. Thinking positive thoughts!

I am beyond happy to no longer have that bag of piss attatched to me. You can’t imagine how great it is not to have to deal with that.

The irony is that catheter is the one thing I felt personally I could never tolerate and I had it for eleven full days. I guess when you don’t have a choice you are simply forced to do what you thought you never could.

I have my fingers crossed that my bladder has healed and this other infection pain is just a blip on the radar.

I want so badly to be normal again. Just the fact that I can sit again to pee is frankly delightful. We take for granted everything that our bodies do for us daily.

Being able to

walk

talk

see

breathe

smell

feel

think

dream

sleep

eat

pee

these are all gifts that you won’t miss until they are gone.

Once any one of those is gone you will wonder every minute why you wasted so much time and energy worrying about your

wrinkles

age

weight

saggy chin

etc.

I know it may sound corney but believe me…

Love your body.

Be grateful.

Cherish yourself.

I am hoping with all my heart that next week back I will be back to writing about something other than my health. Fingers crossed….

I will tell you one little funny story that I left out…I think this is brilliant because it truly shows the difference between how a man thinks and how a woman thinks.

When Robert had his surgery for his kidney tumour his stomach was very big and swollen. That is normal. I was shocked to see just how much, but it is a major surgery and that is just your body’s natural reaction. I understood that this would eventually pass and mostly just a large scar would remain.

When I was in the middle of my trauma, 24 hours after the surgery, we were in the bathroom trying to deal with the blood and liquid leaking out of me. It was the first time that Robert had seen my stomach after the surgery. He didn’t say anything at the time, I was in such pain and it was such a nightmarish situation, really just a blur trying to figure out how to stop the leaking and deal with my pain and nausea. Later though he told me that he was shocked upon seeing my very swollen pointed stomach and had silently thought, “I knew that she said she had gained some weight…but man…that is crazy! Those dresses she wears hide it so well. Underneath she looks like Santa!”

That still makes me chuckle : )

Thanks to everyone for your encouragment and support. I can tell you in all honesty that I read and reread your comments. It helped knowing that there were caring people “out there” rooting for me and I wasn’t just writing to the big black void known as the internet. I appreciate the fact that you took the time to write. You made a difference to me and gave me strength. Thank you.

Continued here…

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con’t from Hospital Night Terrors

9 am in the ER. Everyone is gearing up for another busy day.

I’d made it through to the other side of night.

I didn’t feel stronger for it.

I didn’t feel relieved.

I felt like I had begun to climb Kilimanjaro and had only made it to the first base camp.

A new nurse by the name of Kristina has been assigned to me. She is young, tall and thin. She seems sweet.

A surprise…she wheels me out of the triage room and into one of the triage caves with curtains. I would have my own three walls finally!

She told me that she had seen me all day yesterday suffering in the hallway and said she made it her mission to get me into that triage room.

She must have seen how desperately I needed that.

Having not slept at all and living through what was undoubtedly the worst night and past five days of my life I had a feeling I looked as bad as I felt.

I was repulsed by my own body, now completely foreign to me. I hadn’t had a bath or shower for five fulls days since the surgery. I hadn’t brushed my teeth, hair or washed my face in five full days.

Kristina understood.

She gave me two fresh hospital gowns. When she helped me on with them I felt the tears welling up inside me again. I fought hard and pushed them back down. I didn’t want to break now but I was physically trembling with gratitude. Feeling something clean and dry against my skin meant I hadn’t totally disappeared.

I was still here.

I still counted.

She suggested some fancy “boy shorts” in lieu of the humiliating diapers. Really they looked like a stretchy dishcloth and for some reason reminded me of Sponge Bob Square Pants, but they were a million times better than what I’d been forced to wear thus far.

She offered up a shower. A shower! My heart leapt! Well… a shower in a bag. It was a bunch of sealed wipes in a bag but I was allowed to go to the washroom on my own and freshen up.

I leaned on my IV pole and putting one trembling foot in front of the other slowly made my way to the washroom at the end of the hall.

Once in the bathroom, door locked, privacy! I looked at myself in the mirror…

Who was that? I didn’t know her.

A deranged haggard old lady with tubes and bags attached to her withering, deformed body. Vacant eyes, blank stare, gaunt chalky face, a rat’s nest of hair piled high on top of her head.

Who was that? Where had I gone?

I couldn’t think about it or I’d never leave that bathroom again.

I stopped looking in the mirror and simply focused on the task at hand.

I started with my teeth and the toothbrush that Robert had bought me before he left. Feeling the toothbrush rub against my teeth and the fresh cool taste of the toothpaste in my mouth was better than the best spa day I’d ever had.

Trying to get on the boy shorts while wearing a catheter and IV was much more difficult than I had imagined. No one tells you how to manage when you have tubes coming out of your body. In the end no matter how many times I tried I just made a mess of it. The tubing was rolled into the dishcloth underpants and I was a tangled up mess. I had to use the Emergency button in the bathroom and call for help. Luckily it was Kristina that came to my rescue. It took a bit of ingenuity, yoga moves and turning (like a warped game of Twister) to get me all untangled, but she did it.

I finished taking my “shower” and I felt slightly more human.

A tiny glimmer of myself appeared.

The smallest ember of hope ignited in my belly.

I wasn’t totally lost yet.

My Dr. came by.

She asked me how I was.

Wrong question.

I think she could tell by my appearance and my attitude that I was beyond disgusted and miserable.

She said that it was up to my new Dr. to decide how long I stayed in hospital and any further treatment. He was still suggesting that I remain in hospital for seven more days. Seven more days.

I told her in no uncertain terms that should I need to stay there, in the ER, under these circumstances, that I would simply not get better. In fact I would deteriorate, quickly.

I wouldn’t be leaving the hospital ever.

This is not a healing environment …

whatsoever.

Her answer was that eventually the body will simply give out and I would finally sleep, no matter where I was situated in the hospital.

I didn’t care for her answer.

She told me to plead my case with the new Dr. to see if I couldn’t leave the hospital earlier.

The remainder of our conversation was just… awkward.

I am very sick and it is because of her.

I may need to have another operation and it is because of her.

I will need to have a catheter for ten days to three weeks (maybe longer) and it is because of her.

There was no way around those facts.

I didn’t have my life anymore and it was because of her.