Making a good impression. I know it’s important… I’m doing the best I can.

“Oh Shit!”, I muttered as I sat up in bed, searching for my phone, to see how long I slept.

It wasn’t on the bedside table, where I always put it at night. I clumsily looked around, before finding it underneath me, in bed, the battery dead.

“Mom?”, I called as I opened my bedroom door.

“Good morning sweetie”, she said.

“What time is it?” I asked.

“eleven”.

“Oh shit, oh shit, or shit”, I muttered on my way to the bathroom.

“What’s ‘oh shit’?”, my mother asked.

“My appointment with Dr. _(insert name)_ is at 12:00.”

“Don’t worry. If you leave now, you’ll be fine.”

“You don’t understand”, I yelled from the bathroom, “I have to get ready”.

“Well get ready.”

“I don’t have time.”

“You’re running late, but if you leave now…”

What Mom didn’t understand, what doctors don’t understand is this…

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“Your hair is really tangled”, Mom repeated for the tenth time, as she tried to get all of the tangles out of my hair.

“Yes, I know”, I said, “I haven’t done anything with my hair in days.”

“Oh honey bun…”. She said.

Not only hadn’t I brushed my hair in days, I didn’t remember the last time I brushed my teeth, or washed my face, or…

It all seemed to be so much work. Those things that I did without effort before, have become work, that just doesn’t seem to be worth the effort.

I also hadn’t showered…

changed my nightgown…

gone outside…

talked to anybody who didn’t live with me…

I needed to phone the pharmacy to repeat my medication, find somebody to fix the eavestrough, make arrangements to switch our winter tires, phone my social worker with the cancer centre, and make arrangements to have enough food to eat.

All of these things, weighed on me, making life even harder than it already was. I can feel the importance of these things, know I don’t feel strong enough to do them, and understand the consequences of not doing them. It doesn’t make me do these things. It just makes doing them… doing anything…even harder.

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Today it all came crashing down. I needed to get to that appointment. I’d already missed two appointments with this doctor (I tried to be at those appointments too). I couldn’t totally destroy his opinion of me by missing a third appointment, but I couldn’t go as I was.

He’d see the tangled hair, smell the stinky body, smell my stinky breath, and judge.

He wouldn’t see me as I am. He’d see me as an inconvenient problem who is socially beneath him, and not worthy of his time or attention.

Those times he discusses me with the team in the “interesting cases”, meetings would disappear. The input and phone calls I get (and presumably he gets) from other doctors about my unusual cancer would stop. I wouldn’t get the medical attention that I need, and I’d be left to deal with things on my own.

Because… If she doesn’t care about her health, why should we?

He wouldn’t see the sleepless nights, filled with remembering my father, and quietly crying, trying not to wake my mother up, but hoping she would wake up and comfort me.

He wouldn’t see the daily struggle.

He wouldn’t see, that although I am a mess and my life is falling apart I am trying as hard as I can.

I am not normally like this. I am kind, and generous. When Mom was sick the first time, I was super-daughter, rushing her to doctor after doctor until we finally got a doctor that was not only willing to diagnose her, but one that was willing to treat her normal pressure hydrocephalus (more about that here), and got her admitted to a rehabilitation ward in another hospital. When that was done, I arranged for her to have follow up care in our home.

All of this had to be asked for. Actually not just asked for, fought for. If you didn’t know how to fight for it, you were not given the best treatment.

When Dad was sick I took care of him for two years. I stayed up into the wee hours of the morning to take care of his symptoms, and many times I woke up just a few hours later, because he needed me again.

When anything needed done, I was called. Many times I didn’t even need calling. I just knew what needed to be done.

The myth that those who live with their parents do nothing to help their parents really upsets me. I live here. When I am healthy I cook. I clean. I nurse when sick. I stay awake when needed. I’m woken up during the night. And I don’t mind. I want to help my parents when they need it.

And they help me. They take care of me when I need to be taken care of.

But this doctor…

He doesn’t see all that. He sees me for 5 minutes in each appointment. He spends three hours operating on me when I’m totally out cold. He decides who I am and judges me worthy or not worthy of his time and attention based on that.

It’s important to be clean and well presented at each appointment.

~

Today…

Well I phoned the receptionist and asked if I could make another appointment and was told there was a cancelation at 2:00 pm. Could I go then? Yes.

I rushed around getting myself ready, and drove into the city.

I waited for 20 minutes behind an unexpected train.

And was late.

Admitting phoned and asked if I could still see him.

I could.

Mom and I walked to the examining rooms section of the hospital, was given one almost immediately (that hardly ever happens), saw the doctor and left about 5 minutes after arriving.

I felt so rushed, that I didn’t get to ask my important questions:

Did he get all of the cancer?

Did he think the cancer would come back?

Was the surgery hard to do?

How much cancer was there?

What do they do with the cancer tumour?

What are the stages of a cancer tumour? (Before my surgery, his resident mentioned it, but didn’t explain it).

But I didn’t ask, and he didn’t tell me. I was so nervous I forgot to ask, as he stood by the door, his hand on the doorknob, looking like I was so repulsive that he wanted to flee. He asked if I had any questions, and I forgot what the questions were. I said “no” and he left.

He did tell me “it looked good”, and that the cancer centre would “follow up”, and that I’d get “periodic scans” to insure there wasn’t “anymore cancer”.

And that was it.

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I drove home. Or at least I should have. Instead it was very apparent that we had a very flat tire, once we walked into the parking lot.

We went to were we usually get our tires, stumbled through describing the problem (I don’t know why I had so much trouble. I’m not an idiot but the guy who works at the tire wouldn’t know that from that very awkward exchange) got a “used loner tire”, so we could go home, and were told we have to go in again when the tire they ordered for us “comes in”.

Then we went to the gas station but couldn’t find enough cash between us to get even $20.00 of gas, spent way too much time discussing and deciding if what we had was enough to get enough gas to get home, drove to the bank, drove back to the gas station, and drove back to the back to the town we live in.

Before going home, we got slurpies and snacks, as well as something, for super. As of 8:01 pm we still haven’t cooked it. And we might not. This might become one of those days we eat nothing but small snacks like beef jerky and coke, and get to bed by 10:30 only to start crying and finally get to sleep at 4:00 am, each of us trying to be quite, and not wake the other person, who is wide awake and trying to do the same thing.

We might get up and repeat the process of getting through the day with as little sleep as possible, not having the ability or interest in cooking or eating anything, and repeating the night before.

~

Doctor’s don’t see this. They don’t see the messy hair, because we don’t let them. They don’t see the sleepless nights because we don’t tell them about it. They don’t see the reason we aren’t eating because they wouldn’t understand in the first place.

They wouldn’t understand. We don’t even try to explain. We are doing the best we can, but they can’t understand that.

And then we get judged as uninterested / non-compliant / a bad historian or any other number of things they put in their charts about us.

And then the patients, who probably need their care the most, get pushed to the bottom of the priority list and get the least amount of care they are willing to give.

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Note: This would be the end of the blog post but… although I always knew making a good impression to every doctor was important, these two videos reinforced it. In one the doctor is upset because the patient is not giving enough information, and in the other the doctor is upset because the patient is giving two much information. I’ve been accused of both. “You didn’t tell me about this surgery…”, one doctor said and at another time another doctor said “You don’t need to tell me about something that far back”.

~

Thank you for reading this post.

If you liked this post, please share it, like it, and/or subscribe to this blog? If you’ve already done that: thank you.

This is posted in both of my blogs. You can view my other blog here if you want to. And if you do, thank you for that too.

I’m really really very scared.

Surgery! To remove my Lymph node? In three days!?!

It scares the crap out of me.

I missed the conversation with my surgeon about it because I slept through it. Nothing fancy, like I was in the middle of a poop-a-thon (no that was the reason I missed another appointment – well sort of), or a cute man came to my doorstep and well fell madly in love, curing my cancer and everything else that was wrong with my life (as if real life ever follows the plots of made for TV romance movies).

No: I missed the appointment because I slept in (till 1:00 pm), and woke up to the sounds of the phone ringing me fitting into my dream. By the time I woke up, he had hung up.

I could have immediately phoned back, but I felt so low and hopeless that emotionally all I could do was cuddle up deeper in my blankets and try to go back to sleep. When that didn’t work, I watched youtube on my phone.

Emotionally, missing that appointment and other things hung over my head all weekend, bringing about daily tears and worries my surgeon will take it out on me by telling me off or (worse) doing my surgery badly on purpose.

I worry I’m strong enough to phone my surgeon’s secretary on Monday and tell her I’m really sorry and can I have another phone appointment to discuss my surgery.

I’m so afraid:

I’m afraid to call my surgeon’s secretary and tell her why I missed the appointment. I’m afraid to not call the secretary. I’m afraid of the surgery. I’m afraid of life after the surgery.

I’m just plain afraid.

And I don’t know what to do.

I wish I had somebody to just take over my life and say “don’t worry, I’ll take care of all of it”, but I don’t.

I have family that will drop me off in the morning to have my surgery, and pick me up at the end of the work day after my surgery, expecting me to wait around, in pain, and for hours after the surgery in the cafeteria of a hospital that is in one of the worst areas of my nearest city. (I live in a small town 45 minutes outside of the nearest city.)

I’m hoping I can arrange with the cancer clinic to stay at one of their “out of town” lodges for the afternoon after my surgery. Maybe this way I can get a bed, and not have to sit in an uncomfortable chair while I’m to “impaired” up to drive.

I’m afraid I won’t have groceries or other things I need after my surgery. I’m afraid I’ll be expected to be fully recovered just a week after my surgery, because so far only my mother believes how sick I am and how much I’m in pain with the cancer tumour that is on my lymph node right now and she lives with me. Instead I have family that tell me “I’m not walking enough”, and “not getting better fast enough” (from my first cancer).

Can I even live without a lymph node? Will I have to take medicine to replace what the lymph node does? Won’t a missing lymph node damage my immune system, making it easier to get covid and every other virus under the sun?

Will this misstep with missing the surgeon’s phone call irreparably damage my relationship with my surgeon? What about with my two oncologists? Doctor’s do talk to each other about shared patients. Don’t they?

And… That’s not my only worry. One of the eavestroughs of the house partially detached itself from the roof. I don’t know how I’m going to get that fixed and recover from surgery at the same time.

Will the cancer come back a third time? This is my second cancer in a year. I thought I had dealt with cancer and getting treatment and it was all over… And then this lymph node cancer comes up. What if a third comes in another 6 months? I already had more radiation (for that area) than I can ever have in my life time. That’s why they are removing this cancer and not treating it with radiation. Chemotherapy won’t work either, because all though I can have more chemotherapy having more for this type of cancer is not effective. (Yes I had chemotherapy and radiation at the same time.)

So what if a third cancer comes? With radiation, chemotherapy and surgery all being options tried and failed, what else will happen? Will they just tell me to go home because I’m dying?

Who will be there for my mother in her old age if that happens?

I wish my father was here for all this, but he died a year ago. The day after my surgery will be exactly 1 year after his death.

What are the chances? My father dies, and then I’m diagnosed with cancer just a few months later?

When my father was dying, my brother visited constantly. With my being really sick, we hardly see him. I’m afraid to piss him off by talking to him about it because I don’t want him to get mad and not drive me to my surgery. He already refuses to get groceries for us or drive me to appointments.

And that’s my life right now. It sucks. Well I haven’t even dealt with the poop-a-thons or the pain that consumes many days even though I am on pain killers. Maybe in other blog posts I’ll deal with those. Maybe not. (Note: 2 months later I did write about poop-a-thons. If your interested check out #10 in This post titled: 10 Things that demonstrate how Ugly Cancer Sometimes is.)


Thank you for reading this blog. Since this post was made, I created another blog to help me deal with my cancer, because cancer and the ICU are two different health problems.

Although I will one day post more on this blog, and finish the story of my ICU experience, at this time I am writing more on my other blog, My Health My Blog.

This link will take you to it.

Again thank you very much for reading my blog. If you like what you read, please share it and / or subscribe?

10 Good things that ICU and hospital staff did:

It’s been more than year of a really stressful pandemic, that has made millions of people sick, many of them being admitted to the ICU, and many dying.

ICU’s are more full than they ever have been before, creating impossible workloads for many ICU staff.

I’m having a hard time too. Sometimes it feels like my heart will just burst of sadness and other times I’m so agitated that small things like the ever growing pile of laundry seems so monumental that it’s unsolvable.

The world is falling apart, with political changes and undercurrents, outward proud racists seem to be increasing in numbers, mass shootings, and many other things splash across our news screens everyday, making the world seem hopeless, and ending.

When I got out of the ICU, I typed in the hashtag #ICU into twitter, and was introduced to the wonderful world of tweeting ICU staff. So many of you were so kind and generous with answering questions, and many of you followed me back.

When I started this blog, you read it, retweeted it, liked my tweets and responded to my tweets. You let me know that what I was saying was important, and you listened.

Thank you. You helped me to emotionally heal a bit (not all the way yet).

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I’ve been trying to think of a way to give back to you, during what must be a very stressful time for you. It’s stressful to be in the ICU, and to have family in the ICU, but it’s also stressful to have a suddenly increased workload, be wearing so much PPE that you look like space martians, and then be told that Covid is all a hoax, the hospital’s are empty and you are lying about that workload.

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I have always wanted to help people with this blog. Improving the ICU for those that come after me is the very reason I write it. I admit that each time the viewership goes up, I get a little emotional energy jolt, but that wasn’t the reason I started it. It’s also not the reason I haven’t given up on writing it, even though my life has gotten harder. I feel guilty that I’m not able to write in it as much as I used to.

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Hopefully this list of good things that happened in the ICU and in the ward after the ICU makes your load a little bit easier to carry and your heart smile just a bit for just a while.

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1.) I am alive. I did not die in the ambulance when I stopped breathing. I did not die on Christmas day when I crashed.

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2.) I was so out of it. I knew that occasionally there were people who stood at the end of my bed and talked, but I didn’t know who they were or what they were talking about. I thought maybe they had their staff meetings there.

One day my nurse leaned over me and said “the doctor’s are going to be doing rounds soon. They will stand right there,” she pointed, ”and they will talk about your case. You can listen because it’s about you. You can also ask questions if you want to.”

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3.) I couldn’t speak because I was still intubated. I asked for paper and wrote “I’m sorry.”

My nurse looked at me and asked “Why? You didn’t do anything wrong?”.

“I’m sorry for being racist.” I wrote.

“When were you racist”, she asked.

“When I sang racist songs to you.” I replied.

“You weren’t racist. You didn’t sing anything racist. You can’t sing. You can’t even talk. You have a tube in your throat that prevents that. You’re writing this down to me right now.”

“Oh”, I wrote, and leaned back.

She didn’t say I was the worst person in the world, because I was racist, which I feared she would. She didn’t laugh when it was obvious I was talking about something that didn’t happen. She continued to treat me very well, without resentment. She was one of the best nurses I had and I really really liked her.

Note: This will make much more sense if you you read My ICU experience in chapters, on this blog. There you will see that under sedation I didn’t know if I was male or female, and didn’t know if alive, dead of in purgatory (I’m not even Catholic). It was a complete loss of self, including my believe I was the worst person in the world who was a racist, and was so bad, that the doctors decided to keep me in a permanent coma to protect the nurses.

Although my nurse didn’t know this, and the apology made no sense to her, she didn’t take this apology the wrong way, and I am very grateful.

Over the days after I woke from sedation, her face became a reassuring symbol that I was safe in her care.

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4.) When I was sedated, and totally out of it, a nurse washed, and braided my waist length hair. She even put her own scrunchies and barrettes in my hair to make me “look nice”. That touched my parents so much that they told me about it several times.

To be perfectly honest: It’s not waist length anymore. I got it cut to be layered and about 6 inches shorter about 3 weeks ago and it still seems really short, although to others it’s probably still long.

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5.) When I asked for information on twitter, you tweeted me studies that answered my questions. I needed to understand and I wanted to tell the world about what the ICU was like, and you helped me to do that.

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6.) When I tweeted asking about the long term effects of sepsis which I got while I was in the ICU, you told me about the UK Sepsis Trust, where I got all the information I needed.

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7.) An ICU doctor told this joke “An ICU doctor went to a conference. His wife was worried about being lonely when he was gone. He told her to get something to keep her company while he was gone. When he came home, he found his wife in bed with another man, and yelled “A dog, I meant you should get a dog to keep you company, not a man.”

Yep it’s a corny joke, but it and all the other corny jokes he told made me smile. He started each day with a corny joke that made everybody laugh, and I’m sure he didn’t realize his patients heard him, but I did, and it brightened a part of each awake days there.

8.) I have started many tweets with “As a patient, I”. You considered and respected one patients point of view. Thank you.

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9.) I laid in my ICU bed. A nurse took a Christmas mint out of a pile of Christmas mints and put it in her mouth, before coming to my bed and leaning over me. The smell made me want a Christmas mint, which I love.

She must have realized this, because she walked to the garbage and spit it out, before coming back to me.

That small kindness, did not go unnoticed

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10.) I wanted a pen and paper almost as soon as I woke up from sedation, and I was freely given a pen and as much paper as I wanted. I still have those notes that I wrote about what happened under sedation.

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Hopefully this brightened your day a bit. It brightened my day to write it, so much that I continued after 10 and wrote 20 things.

I will post the first 10 now, and the next ten when I have time (hopefully tomorrow).

If this made your smile, and helped you please help other people by tweeting good things that happen in your ICU, with the hashtag #GoodICU and / or sharing this blog post in any way you can.

What to tell your loved one in the ICU.

I stood at the nurses station, swaying at bit, from the unsteadiness that started in the ICU, and watched a nurse write my request in a big blue binder. “What is that”, I asked.

“It’s your binder.”

“What’s in it?”, I asked.

He used the fingers of his right hand to ruffle the pages of the binder, “It’s the history of your stay here. Everything that happened to you, is written in here.”

“Can I read it?”, I asked.

“You don’t want to read this.”, he replied, which is a strange response since I just asked if I could read it.

“No I want to read it”, I said.

He continued trying to talk me out of reading it, but I knew the law and said “It’s my file, and the law says I can read anything that’s about me.”

“You’ll have to fill out a form to get a copy.”

“Give me the form.”

“I’ll get it to you later”.

I wobbled back to my room, still feeling extremely unsteady, as if I might fall over at any minute.

He never did bring me a form. Everyday I went to the nurses station and asked for a form, and everyday I was given a delay tactic.

When I got home from the hospital, I complained to one of my doctors about not being able to read my file, and he told me what website to go to get a form. I filled out the form, paid the money, and got the file.

I wanted that file, because I did not know what happened to me. I had a vague idea, but not enough to satisfy my questions that nobody was answering.

My family would probably have answered the questions by that point, but our area of the world had a cold front at that time, preventing most cars from starting and many roads to be closed.

What should be told to an ICU patient and when? That was a question asked by Dr. Megan Hosey that said “Family members of ICU patients commonly ask me “What should I tell them about the ICU and when?”, before following up with a tweet that asked ICU survivors what they thought. (I would link the tweets here, but I don’t know how.)

Thank you Dr. Hosey for the idea and allowing me to respond to your question in a blog post.

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I had no idea what happened? I had no memory of the days before I entered the ICU and my memories of being in the ICU were delirium filled.

Before I woke from sedation I knew on some level that I was in the hospital, but I didn’t know why. At some point my brother told me I had started smoking and it was my fault I was in the ICU. That wasn’t true. I’ve never smoked in my life.

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While your loved one is under sedation talk to them and tell them:

1.) Where they are

2.) Why they are there

3.) Why they can’t move (bed restraints, sedation, ect.) Why they are in bed restraints and or under sedation. Don’t let them think it’s because they are a bad person, somebody is trying to kill them or anything else like that.

4.) That they might have delirium what they see might not be real. (I saw all sorts of things, that you can read about in the blog – both written now and written in the future).

5.) Who is visiting

6.) That you love them.

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When they wake up from sedation:

7.) Repeat the information above, because it might not be remembered from one day to the next. I seemed to have lost my object permanence when I was in the ICU and for months afterwards. If something wasn’t right in front of me I simply didn’t think about it. I brushed my teeth, if I saw my toothbrush in the morning. I had to keep my pills on the table where I sat or I’d forget to take them all day. I ate only when I was hungry, because it was hunger that reminded me I needed to eat. Because things are so easily forgotten when a person is extremely sick, things will need to be repeated.

8.) The time and date.

Time does a strange little thing in the ICU. It’s hard to understand, but it bends and becomes non-existent. At one time my brother was there, only he was a child, and his son was standing beside him, the same age as he was. Without clocks or calendars time becomes even more confusing that it already is. Many ICUs don’t have windows and the lights are on all day and all night long, making any way tracking time difficult. Help your loved one to orientate to time, by telling them the time and date.

9.) Answer any questions about why they are there.

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After the ICU but in the ward.

This is where I wanted more information, and started asking for my file. I still had a bit of delirium but I knew that the clock wasn’t really sliding off the wall. It was just because I was seeing things.

10.) Tell the person what happened.

11.) Answer all the questions asked.

12.) Tell them about delirium, and that what they are seeing and hearing might not be real. They don’t need to be afraid of it either.

On my first night in the ward, I called a nurse in and asked “Are there fire works on the ceiling, or am I developing schizophrenia”.

She asked “Why do you think you have schizophrenia?”

“Well because I’m seeing fireworks on the ceiling, and I don’t think medicare pays for such fancy light shows in the hospital. That would be a waste of healthcare funding.”

“No,” she said, “the health region does not pay for light shows in the hospital, but you don’t have schizophrenia either. You have been through a very traumatic event and the brains way of dealing with that is to see and hear things that aren’t there.”

“Ok.”

“Do you want me to get some medicine to make it go away.”

Still watching the light show I said “no, I’ll just enjoy my own private fireworks shows. As long as I’m not getting something else wrong with me. I didn’t want to deal with getting schizophrenia that’s all.”’

The patient across the hall laughed, and the nurse smiled before saying “ok, enjoy the show”, and I did, that is until the not so nice stuff started happening.

Once I knew that I was seeing things, and was not developing a mental illness, the delirium was easier to deal with.

I do wish the nurse had called it delirium. It wasn’t until I got home and read tweets on twitter, that I realized it was delirium.

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After they are home:

I am guilty of this as well. Before I got sick, my mother was in the hospital for 100 days because of a major brain illness. She remembered nothing about what happened when she was sick. When she got home from the hospital she asked questions about her illness almost everyday. Many times it was the same questions.

Although I answered her questions and talked about it when she wanted to talk, I was frustrated, and I don’t think I did as well as I could have.

When I got home from the hospital, I understood and felt a tremendous amount of guilt for not being as patient as I should have.

Thankfully she was more patient than I was, and answered my questions again and again.

It’s hard not knowing what happened, why it happened, but also having this false delirium induced memory of what happened.

13.) Allow the person to discuss that delirium. It may not have happened to you, but it happened to your loved on, and it was scary, and horrifying. It’s a trauma in an of itself, and it can cause PTSD. I was diagnosed with PTSD from my ICU experience. Sometimes calling it delirium seems like a lie and a threat to me, because to me it really happened, and to me it still hurts a lot.

14.) Help your loved one get their own file if they want it, and allow them to read it at their own pace.

15.) Show them pictures if you took any.

My mother took pictures, and I copied them onto my phone. I still look at the often. At first I looked at them almost everyday.

16.) Tell your loved ones, months and years later, that it’s ok to still think about it, wonder about it and ask questions about it. Don’t expect your loved one to be over it. To them it is not in the past. It happened. I think about it everyday and if I allow myself, I feel the pain of it everyday. Things have moved on with my family, and I feel the need to move on with them, but it’s not something I’ve gotten over. I still want to talk about it, write about it and deal with it, but I also feel selfish for wanting to.

Thank you for reading this. If you want to know more, you can read more of this blog, or follow me on twitter for updates. If want to be mentioned in my blog twitter updates, let me know.

Please like this blog post or tweet the tweet it was mentioned in, and share this blog with others? You’re sharing it and liking it, encourages me to keep writing and makes me heart smile.

I yell profanities at my organs.

I was born with internal differences to my organs.

One of my organs is a complete brat, who stands up and yells “Pay attention to me. ME ME ME! I need to be the CENTER of attention. It’s all about ME. Only ME!”, whenever any other part of my body is sick and needs attention.

And I end up yelling “Fuck You (name of organ)”, to my organ. Sometimes it’s an entire paragraph, of “Fuck You. You are not the centre of attention. It’s not all about you. Do not bother me.”

But of course it is… partly.

That particular organ has gotten a lot of attention, and is by now it completely used to demanding my life revolve around it… maybe I should be too.

I’m not. I’m angry with my body. I can not and will not embrace my body, and not because of it’s looks, weight or any other superficial reason.

I will not become “at one with my body”, or any of those other hokey euphemisms healthy people tout without knowledge.

I will not accept my body is me, because I’m not broken.

I may be flawed, I may have grumpy days and days that all I want to do is cry. Everybody does.

But I am not as broken as my body.

I have always known that my body and me are separate. Even as a child. That’s why I can yell “Fuck you”, to my different organs, without saying “Fuck you”, to myself.

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I wish all health professionals knew what it was like to be sick, to have an organ or body part that doesn’t obey, to know that the body and mind are not one, and to know what it’s like to just get up in the morning and ignore aches, pains and illnesses until it can no longer be ignored.

I wish they understood that dilemma when asked a piece of medical history. Should I mention it? Is it related? It’s really to do with this other problem I’ve already been diagnosed with? Will it just muddy the water?

If I mentioned everything in my medical history, you and I would be in that examining room way too long. Try all afternoon.

And then there are the times I just simply forget to mention things because I’m so busy ignoring them that I’m still ignoring them in the examining room.

One specialist doctor asked so many rapid fire questions, I didn’t have time to think about any of the answers. After 10 or more questions quickly fired in my direction, she told me there was nothing wrong with me, and not to waste her time.

She asked so quickly, I got anxious and answered all the questions wrong. I asked for a second opinion but the second specialist, looked at the notes of the first doctor and said “I talked to Dr. So and So. These are her notes, and I agree with her, but here’s some medication you can take.”, handed me a prescription and got up to leave the room. I followed because I had no other choice.

I still wonder if both doctors are wrong, but with her notes, whatever they say, every specialist in her field in my city, who all work out of the same hospital, are going to agree with her. Asking for a third opinion is a waste of everybody’s time, and the systems money.

My family doctor agrees. He thinks I do have the problem he originally sent me for, and is trying to manage the problem without the direction of a specialist, but why should he have to? Why should one doctor’s complete ignorance about what it’s like to answer those questions when you have been sick all your life and have multiple diagnosis’s, get in the way of my health? Why should she have so much power?

Maybe if she understood how difficult it is to answer questions delivered so quickly when you’re asking yourself so many questions about how to answer them, she would give her patients time to think before she asks another question?

I really do wish that all medical professionals were given a drug with a half life of 2 weeks (or even a month), that made them chronically sick for that time period. I want them to wake up in pain, and consciously think about getting out of bed, before they do it.

I want them to have a handful of pills they have to take multiple times a day, and figure out how hard it is to remember each and every dosage, each and every day.

I want them to know what it’s like to be hungry, know you have to eat because not eating will make you sicker, but not have the energy to cook something. Finally you just pick something from a box, put it in the oven and forget about it until it’s ready, but it causes guilt because you know you need to eat better, and unhealthy food might make things worse, but it’s better than eating nothing, because if I eat nothing I can’t take my pills and then…. And the thoughts go in circles of guilt.

I want them to know what it’s like to be too tired to exercise, but feel guilty that you aren’t exercising because you know you should, and then have to explain that to somebody who judges when they “how much exercise do you get”, at your next doctor’s appointment.

I want them to understand how much guilt there is in being sick.

I want them to know they don’t have to add more guilt, and that adding guilt doesn’t help me to be more “compliant”, to only makes it harder.

I want them to know how chronically sick people can be caregivers of even sicker people in the family, put themselves last, and feel guilty about paying attention to their own health problems (even mentioning them), because somebody else is sicker.

I want them to know what it is like to calculate in your head, how much energy it takes to go to the bathroom, and then figure out if it will take more or less energy to return to the place you are when you’re done or just go to bed.

I want them to know, that they don’t see patients at their sickest (unless they are in the ICU), because patients who are really sick, don’t have the energy or health it takes to get dressed, get in the car, drive to the doctor, find a parking space, walk to the office, and see the doctor. Instead they wait until they are feeling healthier to either go to the doctor or just forget about it and get one with life. Or they get so sick they can’t stand it and get somebody to drive them to the emergency room.

I want medical professionals to take a drug, be this sick for a month, and truly understand what it is like to be chronically sick.

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Until you know what it’s like to yell one of your organs with frustration, anger and desperation, and understand what it’s like to be sick (from experience) don’t judge me.

My ICU Experience Chapter 6:

The Chapters form is back, well at least for now. I’ve been stuck on it for so long. Hopefully you’ll see chapter 7 next week.

Of course, there is one thing I learned during this very chaotic time in my life: never make plans. If I make plans something will inevitably make this plans impossible to actualize. If I don’t make plans, I’ll have a good day in which I could do something.

At least that’s the way it seems to be going lately.

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If don’t know about my Chapters, I am writing my ICU experience in chapters, like a novel, because I have novel writing exprience. You can read chapters 1 to 5 by going to the heading “my experience in chapters at the top of this blog, and I encourage you to do so.

Everything that happens in the chapters, happened to me while I was in the ICU. Some of it was because of sedation, didn’t actually happen, but it happened to me, as real as anything else happened to me.

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My Experience in Chapters – Chapter 6:

I turned from the nurses, who were talking about urine feeds, and followed a empty hospital hallway. As I walked the hallway turned to sand, and the sand turned to desert.

A crowd of people, wandered through and sat at tables in the sand, at outdoor restaurant, entirely made of sand.

A little girl came up to me took my hand and said “Come with me”.

She lead me through buildings and a street made entirely of sand, until I came across my cousin, who greeted me and introduced me to his husband Avers, and his children: a three year old and a baby.

My cousin lead me through the sand, to a mansion made entirely of sand.

“Sand?” I said “You made a real sand castle?”

“Ya isn’t it great? When we get tired of part of it, all we do is tear it down, and build a new part of it. The sand is free. We can add as many additions on to it as we want. Come in.” He lead me to the door, but the idea of being in a sand castle, unnerved me a bit.

I stopped at the door, and asked “Won’t the sand collapse in on us?” I asked.

“No, no, this is a new way of building with sand. It won’t fall until we want it to.”

Still skeptical I followed him in. It was gorgeous. The kitchen, with sand counters, a sand table, sand chairs and sand appliances, lead into a patio that overlooked the beach. As I sat and visited, I watched the water lap into the shore.

“It’s nice for swimming.” I commented.

“Oh ya, the children love to take swimming lessons.”

“I can imagine” I said, as I recounted my own experiences with swimming lessons.

My cousin, and his husband told me about their children and their lives living in this land where everything was made of sand. I started becoming less and less involved, and more and more like I was watching it on a TV, but not apart of it.

I watched cousin take his 3 year old daughter, to a fashion company to design a new nail polish, that marbled as it went on the nails.

She enthusiastically designed the entire nail polish from the colours, how it would marble, and what the end product would be like. Although she was only 3 years old, she acted like a miniature CEO, making all the decisions with the aid of woman who worked for the fashion company.

Her face was put on all the ads and she was made the new “it” girl. This was famous three year old, who everybody wanted their child to be like, lead the fashion industry, and made all the money for the family.

As my cousin was pouring all his attention into his 3 year old, this nail polish (that the fashion company was backing), a famous billionaire (who I won’t name because he really exists), stole the land my cousin and Avers bought, as well as the sand castle on it, and the baby in it.

My cousin took his 3 year old, left the fashion house, and tried to get his baby back. The famous billionaire refused to give the baby back, or to let anybody go and get him.

Just as my cousin’s baby was crawling through sand, perliously close to the ocean with the tide coming it, I was screaming “he’s going to die”, as my cousin hired a helicopter, parachuted on to the beach, grabbed the baby, and ran away.

When my cousin and his daughter returned to the fashion company, they had already moved on to the new “it” child who was even younger and cuter.

Having spent all of their money, my cousin and his husband, tried to make their baby the new “it” child, but were told there the baby was too old and there was a 10 year waiting list for “it” children. They would have to audition a baby that wasn’t born yet, time the babies birth for just the right time, and then go through the process again, if they wanted another “it” child.

Deciding they couldn’t wait 10 years they, found another way to make money and rebuild their lives.

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Note: Although this particular cousin doesn’t have a husband or children, it didn’t register as odd that he did at the time.

Note #2: I shortened this storey. As you can see it’s not in novel form. I stuck trying to decided if should even include this storey, because it is so odd and unlike the rest of my ICU experience. I wonder if it was a dream. Why did I fade from my own storey, and become like I was watching it on a tv? Why did it include people who didn’t exist? Why was it so detailed? If I’d written it with dialog it could have become fantasy novella.

In the end, I need to unstuck myself and because it happened in my sedation and is apart of my ICU experience I will include it, even though it is very weird.

Note#3: As always please share this blog post with others.

Thank you for reading and thank you in advance for sharing it.

Children, Doctors and Consent

As I’ve said before, my time in the ICU was not my only time in the hospital. I was born sick and was a sick child, who had many surgeries.

This one is not going to be about the ICU. It’s going to be about the time I spent in the hospital after my major surgery when I was a toddler.

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“Rain rain go away, come again another day”, I sang out to a doctor as I slid under my bed.

He commanded me to come out, but I refused.

He wasn’t even my doctor. I didn’t even know him, but he wanted to learn from me, and I refused. I would not come out and my mother refused to make me.

Instead she responded by saying “she may not be 3 yet, but she has a right to say ‘no’”, and told him to go.

As a hospital staff member, you might be reading this thinking I was a brat. As my mother was telling me this, she laughed thinking how cute I was.

I’m not a brat, and I never was a brat.

Before you judge a sick child’s brattiness, consider what it is like to be a sick child, and what you want that child (all children), to know about their own bodies, an boundary’s.

I was almost three, small for my age, and in my own way saying “no, I don’t want you to touch me right there, right now”, and I had a perfect right to do so.

I understood I was sick, and that I had been sick all my life. At almost three, I was a medical veteran, who had more medical procedures, surgeries, medications, doctor’s visits, sick sleepless nights, and pain than most adults have ever had in their lifetimes.

At that time I was saying to a stranger “no, not now, you can not touch me”.

My mother was making people respect my right to say “no”, and to have control over my own body. My body wasn’t a learning tool for some resident who wasn’t even part of my surgery team to look at, prod and learn from. I wasn’t a textbook, or stethoscope. I was a developing child, whose mother recognized was learning about how to be a person and eventually an adult from that moment. She was allowing me the privilege of saying “no, you can’t touch me”. And she was absolutely right.

It doesn’t matter than she was inconveniencing and even angering medical staff. They are adults. They’ve already learned their bodies were their own, and about consent. They weren’t being asked to be touched, and examined and have medical gowns pulled away to expose bare skin. They were not the ones in their formative years.

My mother was teaching me what consent was and that saying “no” to being touched is ok.

Maybe thinking about consent with a toddler is, uncomfortable to think about, but sick toddlers grow up to be adults, and if those children have learned as toddlers that they don’t have a right to say “no”, and that they can be touched when ever and where ever a stranger wants to touch them, and that they are “brats”, if they don’t concent, how are they going to apply that when they are adults?

If your a child who has already been told your consent doesn’t matter, how will you respond to a pedophile?

If you’re a teen who has learned as child that you can’t say “no”, how is that going to affect sexual exploration?

If you are an adult, who has already learned, that you don’t have control over your own body, how is that going to affect your ability to distinguish abuse from normal adult relationships?

Children are growing, learning and understanding the world around them. They are not little science experiments, or textbooks. They are not work places.

They are people, who deserve the right to grow up, in control of their own bodies. Do not break their spirits in an attempt to fix their bodies, or worse, learn from their bodies.

If you work with children, in a hospital or medical setting, remember that. Please see your child patients as developing and learning from everything you do, and ask yourself “what you do want them to learn from you?”.

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Crying Alone in a Quite Basement:

I sat alone in a quite basement, the sound of Dad’s oxygen machine, rhythmically going in and out, in and out, as I cried, and tried to stuff my feelings beneath the surface.

It didn’t work very well.

In the medical field the roles don’t often converge. Caregivers don’t often become patients, and patients don’t often become hospital staff.

In my home, the roles converge so often, that I have been both caregiver and patient several times.

Both are hard.

It started when I was born, a very sick baby, that was diagnosed as “failure to thrive”, which means “I don’t know what’s wrong with her, and I don’t care. Take her home, so it won’t be my problem any more.”

My mother, thankfully wouldn’t accept that diagnosis, and took me to a series of doctors until I was diagnosed, and eventually treated with surgery.

The daughter whose live a mother saved, grew up to save the mother’s live.

I noticed something was terribly wrong with my mother, when she got lost coming home from the store, which is only 2 blocks away.

Thus began the same desperate search for a doctor to diagnose Mom. By the time she was diagnosed, a year had gone by and she couldn’t get out of bed, role over by herself, or have a conversation beyond bathroom needs.

That winter was a cold winter, but both Mom and I missed it. Homecare people came and went, complaining about the cold as they did, but neither Mom or I noticed it, because she was consumed with illness and I was consumed with getting her better.

Dad, who traveled for work, came by every two weeks for a weekend. Sometimes he’d stay longer and sometimes he wouldn’t.

In the end, he took a leave of absence, and stayed home all of the time.

We finally got a diagnosis and surgery, followed by time in rehab to learn how to walk again.

She was still recovering when she got home.

Just as she got almost completely recovered, I had an allergic reaction to something I didn’t know I was allergic to, and ended up in the ICU. In the ICU I got sepsis and pneumonia and crashed twice. Once on Christmas Day.

It’s been almost 2 and a half years and I still am not fully recovered.

A month after I got home from the hospital, Dad got sick, and ended up in the hospital. Thus began a two year battle with his health.

He is now dying.

There is a hospital bed, in the living room. It mostly likely will be the bed he dies in. There is an exercise bike in the office, making it very hard to write. Right now, I’m on my bedroom floor, surrounded by both clean clothes that haven’t been folded yet and dirty clothes that haven’t been washed yet.

The basement is a huge storage room, where everything that can’t fit up here anymore has ended up piled up. It used to be a furnished basement, but as our family gets mired more deeply into Dad’s illness, the basement gets more and more stuff, to make way for new things like hospital beds, and bath chairs, and medical supplies upstairs.

Just as our house is in disarray, I feel like my life is in disarray. Because we are in the middle of a pandemic, Dad’s care has fallen on us, and us alone. Family can’t come over, although slowly we are breaking the rules more and more, and maybe they will end up completely broken. I don’t know.

I haven’t had a chance to emotionally heal from any of this. One thing happens, so suddenly that the emotional healing from the last thing hasn’t been completed. Wound after wound piles onto my being, creating guilt that I am inside yelling “what about me”, as my father lays dying in the living room.

That is what live in like for your patients and their families.

Before they even got to the ICU they may have had problems caused by prolonged illnesses, or things completely unrelated to medicine.

And then the ICU brings with it all the things I’ve described in this blog under the “chapters” tab and the other entries. For the family it brings fear of death and the unknown.

It can be pain added to already broken people.

If Dad ends up in palliative care or in the ICU, I will already be broken before he gets there, because right now I am very broken. I cried much of yesterday, and today seems like another day of crying. My eyes are swollen, I haven’t bathed in several days, the house is a mess, and I’ve been displaced in my own house. I don’t know when it will ever end, because even when it does end with Dad’s eventual death, my pain won’t end. It will only get worse.

Please see your patients and their families as potentially broken people? Don’t judge their actions as people who are completely in control of their lives, actions and emotions?

For you, each day in the ICU is a completely normal day. For your patients and their families it could be the worst day of their lives.

If they need things repeated, if they seem in a fog, if they snap at you, if they seem just “off”, it is because they are under stress. They could even be in shock.