It’s Been Awhile

Geeze. I knew I was slacking on the blog posts, but not blogging since September? My bad.

I have a good excuse though, don’t worry.

This blog post is going to be a long one because we have a lot of catching up to do. So go brew some tea and come on back.

The Fall went by for me in the blink of an eye. After my meeting at Sunnybrook with Dr. Law, I was then sent a referral to meet with Dr. Ian McGilvary over at Princess Margaret. He is a renowned liver transplant surgeon who is used to performing very complicated surgeries involving the liver and the ducts and arteries surrounding. So our meeting went well I guess, we discussed surgery and the complications surrounding it. Even though I have had three major liver surgeries in the past, he let me know this one would be the biggest and the most complex. It involved removing another section of my liver as well as my bile duct and artery, and then reconstructing them using a vein from the leg and a part of my intestine. So I began mentally processing all of this and was on board with the surgery even though I was terribly scared. However, like all things in my life, it wasn’t going to be that easy. I had to go have a PET scan in order to firm up the exact placement of these liver mets. Sure enough, the PET scan found something. Which is CRAZY because I just had one only two months prior. An eight centimeter tumour was discovered on my right ovary. Surgery was cancelled yet again and chemo was now indefinite. Awesome.

Now, let’s rewind a bit here. Just before my PET scan in October I started to feel off. Couldn’t really nail it down but I wasn’t feeling like myself. I chumed it up to the stress of everything going on and just figured it would go away. My PET scan was performed at Princess Margaret and this is only important information because every hospital seems to have different ways of performing the same scan. So I drank the toxic chemicals, sat for an hour waiting for them to get all up inside of me, and then had my scan. The next day I woke up and went to the washroom as per usual, but noticed my urine was a stark yellow colour. I thought maybe this was me peeing out the chemicals and that it would go away. I drank lots of water and throughout the day it didn’t change, it also was thicker than regular urine. Which don’t ask me how I know that. I can’t explain the feeling but trust me you can just tell. So a few days pass and I mention it to Chris, who is positive that I must just be dehydrated. So I did a test. I drank glass upon glass of water that morning. When I used to track the PH levels in my urine I became quite familiar with how my body and pee change colour when I drink a lot of water, so I knew what to expect. Sure enough after copious amounts of water, no colour change. It was still brighter than anything I’ve seen before.

One quick Google search to “extreme yellow urine” brought up the idea that it could be bilirubin – which is what your bile duct in your liver filters out. Uh oh. So to my family doctor we went. A blood and urine test was done and we waited on the results which she said would take a few days. Well during those days I became much worse. I couldn’t eat, was nauseous and throwing up. Something was wrong. So we went to my local hospital emergency room to find out what the hell was going on. Seven hours later, they said yes there was bilirubin in my blood and urine, but because of my many surgeries they didn’t want to do anything further with me. They let me know I should call my doctors at my main hospital to fill them in. Great, thanks for wasting my time. Oh and this was on a Friday might I add, so I would have to go the weekend without any help or answers. As the days went on I was feeling worse and worse. It was hard to even keep liquids down. Finally Monday came and I called Dr. Jayaraman’s office first thing and let them know what was going on. They called me back an hour later letting me know I would most likely need a stent put in my bile duct, because the tumour attached to it was probably compressing it closed. That Thursday I was back at the Ajax hospital for my stent procedure, and Friday I actually felt better. We ended up having to go to Toronto that day to meet with Dr. McGilvary which is where he told me about my ovary tumour. By the way, when bilirubin is in your blood and urine it is called being jaundice. I was definitely yellow due to the die in my blood and looked like a Simpson character.

Phew, now that part is all caught up. So now we are in late October. I was told I would be going back on chemo and he was happy that I found relief with the stent. The next day everything got worse. I couldn’t eat or drink, I was nauseous and throwing up. Something was wrong again. By Tuesday night my body just couldn’t take it anymore. Chris was frustrated seeing me this way and he said I need to decide if I want to go back to the hospital. I think he was shocked when I said I did, because he asked me the question like 5 more times. I told him I wanted to go to St. Josephs emergency this time. They have all my records and I won’t be there for 7 hours and then just sent home. Driving down I told him that I was sure they were going to keep me for the night. Sure enough, they took one look at me and my terribly yellow complexion, and rolled out the red carpet straight to a bed in emerg. After a CT scan I was told my stent had also collapsed and I would need a metal one put it. They scheduled this for Thursday afternoon. The next two days and nights were unbearable. The hospital was over run with old people who had the flu, so there were no beds on the main floors. I was stuck in emerg on a bed behind a curtain. The lights were always on, there was constant noise and screaming. To use the bathroom I had to walk down a hall in front of tons of sick people and then sometimes wait in a line. I was so weak and sickly so this was extra hard for me. By this point my jaundice was as bad as it had ever been. I was the brightest yellow and even the whites of my eyes were gone. I had also dropped 20 pounds. Those few days I didn’t even look in the mirror because it was too sad of a reflection. In my bed in emerg I would just sit with a bag in my lap, throwing up bile because I was still not eating, just wondering if this is how I was going to die. It was terrible. I am actually crying right now just remembering how bad those two nights were. Finally Thursday came. I had my stent put in and was FINALLY given a bed up on the surgical floor. My old stomping grounds! I had been there so many times throughout the years I knew a lot of the nurses so it was nice to be looked after by people who knew me. Thursday night I felt some relief. I think I started eating a bit? But truthfully I do not remember much. Friday morning I woke up, my nurse came in about 6:00am to take my blood and flush my port, and I instantly threw up. Something was wrong, I could just feel it. I had this nurse many times before so we were chatty and she said by and let me know she would be back at 7:00pm to see me for her night shift. The poor nurse for the Friday day shift had NO idea how bad her day was about to get.

By about 10:00am I began feeling really not well, but couldn’t place it. I just knew something was off. When Chris arrived that morning I let him know that I wasn’t feeling well, and I just had this feeling that it was going to be a long day for him. Minute by minute I began feeling worse  and worse, and this overwhelming pain was taking over. My nurse and doctors thought maybe I was just “backed up” and started giving me depositories to help get things moving. I knew that this wasn’t the issue but I’m not a doctor so of course my thoughts were falling on deaf ears. So here I am, sitting on the commode chair beside my bed trying to poop, while Chris is rubbing my back. God bless him. Sure enough, nothing happens. So they try again and pop another one in me. Back on the commode I go. Then as I’m sitting there I get this rush of pain come over me. It just hit me in a flash. I immediately just want all of my gowns off of me. I strip down and Chris has no idea why or what the cause is. I just started telling him I needed everything off. Oh by the way, I also had my period during this time which was AWESOME. So when I started taking off my clothes I also just threw my underwear with my hospital pad on the floor for Chris to pick up. Again, God bless him. I crawled back in bed and just started screaming. I didn’t know what else to do. I have been through a lot, but had never felt pain like this before. I was in a fetal position, naked, gripping the side of the bed, screaming in pain. I can’t even explain why screaming even occurs when your body is in the much pain. I have thought before walking past hospital rooms where patients are screaming and thinking “calm down there is no need to scream”. But seriously, when you are in so much pain it is like your body’s only release is to just scream. So I did. A lot of these next hours are a blur to me. I know at one point Chris had to step outside the room because he couldn’t take just watching me scream out in pain. After an in bed ultrasound, x-ray and then sending me down for a CT, it was determined that I had pancreatitis – a side effect from the stent procedure. I was pumped up on pain meds and thankfully they started working. But HOLY CRAP it is legit the most painful thing I have ever experienced. I do not wish that type of pain on my worst enemy. If you are new to this blog, read back and you will know that I have been through a lot of pain before. There is NOTHING like suffering from pancreatitis. So that Tuesday drive to the emergency turned into an eleven day hospital stay. It would have been longer but I’m crazy and asked to be discharged and sent home.

Ok this post is long enough for now. I’ll continue this story in a few days. Till then, here are some fun photos of me during that time.

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I’m just so annoyed

It’s happening again. I’m not a full on cancer snob, but I seem to be eye rolling quite a bit. If I hear or read another “courageous” story about so-and-so who had cancer once, twice, three times it came back – I might throw up. I know, it’s horrible to say that but I can’t help it. Oh she had cancer and then they cut it out, and some chemo occurred, then it came back and she had to do it all over again – what a miracle woman!

Just shoot me.

It is unfair to play the “who’s life is worse” game, because everyone has their own experiences. So I silently eye roll and feel this tightness in my chest from frustration. I just want to yell out, “Oh you think that is hard? PLEASE SPARE ME.”

I know, it’s not very nice. So sorry if you fall into this category. It sucks. Having cancer sucks. I get it, TRUST ME. I’m like this with everyone though, I don’t just single out my other cancer peeps. Broken limbs, child birth, minor surgeries, you name it I eye roll them. Sorry. I can’t help it that I feel like I just can’t even come CLOSE to relating.

But like honestly what the actual fuck is my life? How the hell have I gone through all this shit in just 4.5 years… and it’s still not over. Just when I think it’s over, and the hope starts to crawl back in, I get a massive slap in the face. So annoying.

What’s funny is when I meet a new healthcare professional who doesn’t know my history and I have to list it. Watching their face while I list out the dates of my surgeries, how much chemo I’ve had, what my status is now – their jaw drops. The surgeries I have had alone in just 4.5 years are RIDICULOUS. I remember going with Chris to see a taping of Cityline a few years back. They had a guest on who had/has cancer (I can’t remember), and she had 7 or 8 surgeries over a number of years. I remember thinking “Woah, that’s crazy.” I am almost positive that I have either surpassed her or have done it in a much shorter time span. My 7 surgeries don’t even include the multiple day surgeries I have had. Stop cutting me open people! I’d like to not have a panic attack on a cold metal table just for one year. Is that really too much to ask? Now in two weeks I’m getting a port-a-cath put back in which is FABULOUS because now I’m GUARANTEED at least one panic attack a month when they have to flush it. Obviously there will be WAY more every time I step foot into that dreaded chemo room and they start poking me with more needles.

Uggghhhhhhhhhhhhhhh. Can’t someone just give me lots of money so I can go on a trip and forget about life. Maybe just never come back? How long can I survive with this shitty ass liver if I park it on a beach?

If you could have 2 amazing years on a beach or 5 shit ass years on chemo – what would you choose?

SEE WHY THIS SHIT IS SO HARD. Longer life is better but quality of life is also better? Is that even a sentence that makes sense? If you can’t have both, how the fuck do you choose?

Cancer, party of one

Where do I even begin? (I just finished this blog and apparently I had a lot to say. So grab a coffee and a comfortable chair)

My whole plan when I took a break from blogging back in the Fall was to pick it back up after my scan in March. I had this idea that I could share with all of you my amazeball results of my first, second clear scan and then I could FINALLY share what I discovered my passion to be! Of course that fantasy is just that, a fantasy, and the reality is life never seems to be that easy.

I’ll share my passion another time…

For now, I’m just going to share what has been going on in these last few weeks.

My scan was on March 15th and it was a typical scan day. Drank the crap, joked around with my CT tech, got the IV, scan scan scan, then drank litres upon litres of water for the rest of the day to flush out my kidneys. Normal shit. The only change to the whole routine came with the delivery of the results. Back in the Fall I asked my surgeon if he could save me a trip to Toronto and just call me with my results. He agreed. So later that afternoon he called and said the following;

Liver and lungs – clear

Right ovary – unsure, needs more testing

I’m sorry what? Did you just say now I have to worry about my god damn ovaries?

He proceeded to ask about when my last colonoscopy was, how have my bowel movements been, when was my last period, etc etc. Then he let me know he was off to Whistler but I would be getting an ultrasound appointment in the next two weeks. Perfect.

Then my brain entered into rapid fire mode. It was dissecting every word and pronunciation he said and trying to figure out what the underlying message was.

This is what my brain told myself in less than a minute:

When they were first diagnosing me they told me they thought I had cervical cancer that had spread to my liver. So that means that scan showed the shadow in my colon but then thought it was in my cervix. So this one must be showing the same thing and that’s why he’s asking about my last colonoscopy. That also makes sense because it’s probably just stage 1 or 2 and that can be easily cut out but he doesn’t want to worry me because he’s in Whistler for 2 weeks. This also makes sense because my colon is the only place that when they removed the tumours they did not get clean margins. Yep, cancer in the colon is the logical answer. Or it’s in my ovaries. Or both. Start panicking.

So that was a fun night. The next day (Friday) I received my ultrasound appointment, for the Monday. This further spun my idea tighter around my finger because whhhyyyyy would they book me in so fast!? Yep, shit’s going south.

So that weekend was fun.

Monday comes and my ultrasound tech isn’t aloud to say anything about my exam but does say, “Don’t lose sleep over this.” So that calms me down slightly for the next week and a half while I wait for my next phone call.

The results? Oh inconclusive yet AGAIN. Somethings going on and they can’t figure it out and they can’t brush it off either. My surgeon is frustrated with the radiologist who wants to now send me for an MRI. So he asks if it is ok that he takes me case to the next tumour board meeting.

What is that you ask? A bunch of doctors and radiologists will review cases and give their professional opinion on what they think is going on. It’s actually pretty cool. So of course I agree because why wouldn’t I want more eyes reading my file and trying to figure out the mystery of the ovary.

So that’s where I still stand now. The meeting is on Monday and then I will find out what they said on Tuesday and go from there. Almost a full month after my scan and the results are still slightly unknown.

As you were reading this if you thought, “Well at least it’s just an ovary, you can remove those.” You are not alone. My husband, mother, best friend, and mother-in-law all said the EXACT same thing. And yes, you would be correct, I can lose an ovary. My problem with that is that I am not Swiss cheese. It is very easy now for people just to jump to the surgery idea for me without even blinking an eye. That’s how NORMAL surgery has become for me. This summer will be my first summer since 2014 where I haven’t had any surgery. That is just so crazy even to write.

What you need to step back and think for a second is say this wasn’t a story about a girl who has been under the knife more than she can count. What if this was just a regular ole person? Would your first response from an abnormal scan be, “Oh, well you can just lose an ovary!” Probably not. You would probably be worried or upset and have a tad more compassion.

I am not mad at all at the four closest people in my life jumping to that conclusion so fast. I get it. They are just happy that if it is something, it can be removed – aka non life threatening. But to me, I’m not a cadaver. You can’t just keep slicing and dicing me.

Well I mean you can if it saves my life, but that’s not the point.

The point is, as I have said in previous posts – Every piece they cut away is a piece of me. Literally and figuratively. I don’t want another surgery because I don’t want anything to be fucking wrong with me anymore.

If you are actually in my life and are shocked reading this and are thinking to yourself, “Wow, I had no idea all that was going on.” Surprise! That’s what happens when you go on with your own honky dory life and because I removed the cancer sticker plastered on my forehead, why would you ever think I even deal with matters like this anymore right? WRONG.

Here’s the take away for people reading this who are fighting cancer themselves right now- Cancer is an EXTREMELY lonely disease. The people who rally behind you at first drop off one by one every day longer that you still fight to survive. So YOU have to be the strong one. No one else is there anymore to fight your battles and pick you up when you are down. YOU have to wake up every day and choose not to live in the comfortable dark hole and step into the light. YOU have to remain positive and keep telling yourself that you are just fine. YOU have to put a smile on your face in public and act like nothings wrong. If you solely rely on others to raise you up and motivate you, now’s the time to start finding that voice for yourself. I’m telling you the crowd dwindles fast and when you are left alone, take a minute to be sad, and then pick yourself back up, dust off and continue on fighting.

Ativan 

So here is part two of my addiction story….

During my many chemo sessions, it became apparent to not only myself, but to all of the nurses working in oncology, that I was developing MAJOR anxiety before even stepping foot into the clinic. My oncologist wrote me a prescription for a drug called Ativan (also known as Lorazepam) and told me to put two under my tongue an hour before each appointment. Well I did, and they did nothing. I kept the bottle in my cupboard at home and thought nothing of them. 

Before each and every surgery the same thing would happen – I would have a major anxiety attack. After the first major blow out I was also prescribed Ativan to be taken 30 minutes before being called into the operating room. Just like with the chemo anxiety, they did nothing. 

All I ever knew about this drug was that is was to help with my anxiety. From my experiences I thought it just didn’t work for me. 

While packing in March to head on my Thailand and Australian adventure, I was taking out the Advil bottle and noticed the bottle of Ativan. “Perfect find!”, I thought to myself. Just in case I have an anxiety attack while away, I will have something to help calm me down. I made an appointment with my family doctor before leaving, and told him that I had a bottle of Ativan and it never worked for me before. He then prescribed me a bottle of Clonazepam, and said they might work better for me. 

Both Lorazepam and Clonazepam belong to the drug class known as benzodiazepines. They act on the brain and nerves and produce a calming effect. 

While on the 17 hour flight to Hong Kong, my panic set in. So I popped a Clonazepam and low and behold, I felt nothing. 

Great. My anxiety levels are too high for these drugs apparently. 

A few days later, finally in Thailand, I was having some anxiety before bed and thought I would try just one of the Ativans. 

The following day I woke up and could not believe it – I actually had a full nights rest! 

I have not slept through the night since I don’t even remember. With my multiple keloids on the body, and the anxiety and pressure from this cancer world, I toss and turn throughout the night. But now, I feel rested and AMAZING. Well, this is a miracle. 

I decided right then and there, I would take one each night to help me sleep. They did not make me groggy or even put me to sleep. But what they did do is KEEP me asleep. Which was the best thing I had experienced in a long while. 

In May I went for my consultation with my surgeron for my upcoming surgery, and I told him about how Ativan has helped me, and if he could right me another prescription. He did, but only for 3 months because he said he wasn’t allowed to write one for longer than that. Well that’s annoying, but I thought nothing of it. 

I dropped off my scrip and when I went to pick it up the next day, the pharmacist let me know that I was NOT allowed to get my next 30 day refill till the actual day it was due. Ok, sure lady. Again, I thought nothing of it. 

Now in August, I made an appoint with my family doctor again to have my pre-op for my colonoscopy. During our talk he saw I wrote down that I was taking Ativan. That reminded me, my three month prescription was almost up. So I asked him to write me a new one. 

“Are you addicted?” He quickly asked. 

“Um no. You know me I hate taking drugs. This I just use to help keep me asleep. No big deal.”

“Ok. You are a special case. With everything you’ve been through I can understand if these help you.”

I was so confused. Why was he being so weird? 

“Are these super addictive or something?”

“YES. Very much so. But you are different than most people and I know you wouldn’t be taking something unless you truly needed it.”

He wrote the prescription and told me to just have the pharmacy fax him every three months for a new one. 

I went home and spoke to Chris about my conversation with my doctor. He and I agreed that if it was helping me right now, then it’s ok. 

Later that night I got into bed, took my pill, and then began googling “How bad is Ativan?” – oh the things that came up. So many blog posts about people who were given it in the hospital, and it took them months and sometimes YEARS to get over the withdrawal. It explained how it is the most additive drug and that you should start with a low dose of 0.25mg. 

Holy crap I was taking 1mg! 

The next day I woke up and said, “Nope, I’m never taking that again.” 

The following day I woke up, and was instantly in withdrawal. My skin was crawling, my heart was beating out of my chest, I felt super anxious and couldn’t stop crying. Just a complete mess. I didn’t know what to do. If I took a pill to stop it, I would still have to take one at night – so then I would be taking two pills in one day. That wasn’t the answer. I called my doctor but he wasn’t in that day, and I was told he would call me on Monday – this was Friday. 

I cried and cried to Chris – I was so mad at myself for getting into this predicament. I started reading online how hard it was to come off of this drug, and that got me even more scared. Chris was amazing and calmed me down. He let me know that I am not a drug addict, that my case is different. If I needed this to help me get to sleep then so be it. 

I, on the other hand, did not agree. I couldn’t live with myself if I knew I was taking a drug that was highly addictive. I think it would cause me more stress. From all of my readings it seemed like the best way to get off of it was to slowly drop your dose down. So Friday night I took a pill, and then I decided Saturday I would not. When it came time for Sunday I though, hell I will roll the dice and just not take one tonight either. On the Monday I felt the withdrawal, but it wasn’t overwhelming as it was on Friday. When my doctor finally called I told him my predicament and he said very firmly, “Do not go off of this drug cold turkey. You have to gradually take it out of your system.” 

Well as we all know by now, I rarely listen to doctors. 

So I decided to push myself, and if it got too bad at any point I would give myself permission to take a pill. 

It took about two weeks, but I finally began to feel back to normal. Now, here is the craziest part. My depression also has seemed to have left. I no longer feel as though I am living in this dark hole. I truly believe that has to do with being off of the drug. I still have my days obviously, but they are not a constant anymore. 

My sleeping is back to being scattered, but now I am looking for more natural remedies to help with this. 

Addiction 

I avoid drugs. I know how easy it is to become addicted to pain killers, so I was always scared to take them. Since I have always been vocal about this to all of my doctors, they are never worried about me and always tell me, “Don’t be a hero and just take the drugs if you need to”. (Well ok they do not use the term “hero”, that’s my ad lib 😉) 

After my second surgery in 2014, I saw first hand how easy it was for my body to become addicted to drugs. Even though my mind wanted nothing to do with it, my body began going through extreme withdrawal when I tried to stop taking the Oxycodones. My skin felt like it was crawling, I was sweaty but shivering, and my heart felt like it was going to beat out of my chest. I was forced to continue to take them and gradually reduce the dose. Since then I have refused to take anything other than just regular ole Advil – well until recently. 

I was in a lot of pain and discomfort after my recent lung surgery, and when I went in for my post-op, my surgeon told me to just take even a single pill if I think it might help. After discussing it with Chris, we both decided that I will have to try it as the Advil did not seem to be doing the job this time. So I cut the oxycodone in half and took it at 6:00pm. At 9:30pm I still felt no relief so I took the other half. By 10:00pm my whole body was numb and I felt drunk. No joke. I had to put myself to bed. 

The following day I had plans in the morning so I woke up and felt groggy, but I figured that was only because it was 8:00am. It wasn’t until I was half way to my destination that I realized, “holy crap I am SO high right now and should NOT be driving”. I pulled into a parking lot and had my friend pick me up. This feeling lasted till the mid afternoon! 

When I got home I looked at the bottle, my original prescription was 1-2 every four hours!! WHO COULD SURVIVE THAT?! 

Never again – I went back to just suffering through the pain. 

So, this story is not even the main reason for this post…. I will have to write an “addiction part two” tomorrow. 

But to finish off our discussion about oxycodone – or just any pain reducing drug for that matter. BE CAREFUL. The doctor will prescribe you what is the standard dose, but LISTEN TO YOUR BODY. Do not just read the label and pop away, see what works for you. I am not advocating to never take a pain pill. Tolerances for pain are different for each individual, and if you are in too much pain then that will actually harm your healing process. All I want to make known is just to be aware of the problems that can come from taking pain killers. It may help with your pain but it may be hurting you in some other way. These drugs are strong so please use with caution. 

Acceptance 

Even though it may seem sometimes I am a Debbie Downer, it’s actually not the case. 


This was taken in Thailand just 30 minutes after I told Chris that I wish that cancer would just kill me so this crapshoot life can be all over with. Can’t you see it in my eyes? I had a LARGE SCALE breakdown. But with a few hugs and some laughter, I was able to pick myself up off the floor and head out for dinner. I thought to myself – I don’t want to feel this was anymore – but then how do I change it? 

I’m not over here though praying to be “cancer free”. I honestly don’t know if that will ever truly happen. What I am trying to do is shift into the world of acceptance.

That is a big world to use. Accepting the fact that I have, and may always have cancer, and that’s ok. This year could be my fourth summer where I have to enjoy it from inside the hospital walls. Learning to walk again in the humid weather. Watching everyone cool off in the swimming pool while I sit on the sidelines. Struggling to find the strength to move from the couch to the kitchen. Maybe that’s ok? If I just learn to accept my disability then it will no longer have power over me. 

So today, that is what I am choosing to do. Remind myself that it is what it is, and I am who I am. And maybe there is nothing wrong with that. 

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Finding The Word

Crying has become a part of my everyday life. It is just something that happens and I am almost getting used to it. During my most recent therapy session, my therapist wanted to know why. She wanted me to seek the reason as to why I cry. It started with me describing the memories that like to pop up in my mind daily. All of the ones of me in the hospital, getting poked and pulled and crying out for help. So then the question was, why are these memories the most prominent? What was the common thread that linked these together? I couldn’t figure it out, so we moved on. She then asked, if you could use one word to describe why you cry, what would that be? I had no idea which made the tears come even harder.

Vulnerable. I cry because I feel so vulnerable now.

No, that’s not it.

Independence. I cry for my loss of independence.

No, that doesn’t work either.

Misunderstood. I cry because no one really understands me.

Nope.

Grief. I cry as I am grieving the life I once had.

Dammit that’s not it either.

Then I thought about the hospital, and the memories that haunted me the most. The ones that like to creep into my thoughts and distract me from all of the positive. What was the common link?

No one was there.

When I was having anxiety attacks on operating room tables. I was crying and begging them to stop because I was scared. They would hold me down as I struggled and I would look up the bright light and wish it would all be over.

When my blood pressure spiked and my heart felt like it was coming out of my chest. I kept fading in and out of consciousness and thought I was dying.

When I was told they had to pull my liver drain out at my bedside and they would not wait for my family to come to hold my hand.

When I was struggling to stand and I had to call the nurse to wipe me after the washroom.

When they stabbed my arms and held me down trying to insert a picc line.

Nurses and doctors were there, sure. For the most part they were so friendly and helpful, but they are not family. I also fully understand it is impossible for family to be in the hospital 24/7, so I don’t blame anybody.

So now that we have figured out the common link, is that the reason I cry so often? What is the word that I feel would best describe my feelings in general?

Alone. That’s the word.

No matter how much I explain, no matter who was there for what, no one has been there for it all. No one is in my head having to live with these thoughts, and the ones described above are just a handful of them.

Alone does not only describe those moments, but so many others. I have met a lot of wonderful people who can better understand my experiences, but no one fully can. No one I have met has had 6 surgeries. No one I have met has been told twice that they are inoperable.

So now that I have named it, I have to work on accepting it. There will never be anyone who will fully understand other than myself. So that is the next step. I am working on it, alone.