Home Day

Home Day

So the big day has finally arrived first time home in months. Technically I am suppose to be home already but due to some red tape everywhere they are keeping me in until around July 5^th. I’m not overly upset about having to spend time in the hospital but it I really could go for a full night’s sleep and here there is always something ringging. I was joking with Aaron last night that I have already fallen of the blogging wheel but I got distracted last night with my new geeky love (which is Microsoft Publisher I turn everything into clip art). The weather is really fogging out today which is a bummer but I think I get my first shopping trip to Chapters today, and mingle around some real people.

Physio wise yesterday ended up being a great day; I did stairs for the first time, which for me is the equivalent to do doing a marathon, baby steps though (or giant hills in the case). Also did a few laps around the 4^th floor in the walker my balance is still pretty off but at least I know the strength is increasing, even though it feels like it is turtle pace I just need to keep reminding myself that it was only a few weeks ago that I couldn’t get out of bed and now I am going shopping.

So I think I am off getting ready for the big day (just saw that my mom has been up since 6). Thanks for everyone that started to read the blog, leave me some questions if you are curouis or have topic ideas (I think you can just post them on facebook if you don’t want a blogger account).

Happy Saturday !

Early Mornings

Good Morning J

Feeling pretty good this morning so I thought I would put a small blog post up. One of the nice things is that I think I have seen almost every sunrise since Toronto and since I never know that the actually temperature it makes me always want to go outside. Nighttime here was pretty uneventful. Once again I got the super nice nurse. Crazy cancer brain came up with this story that someone really important came in last night on air ambulance and I almost snuck into the hallway to find out, but as for regular midnight hallucinations and such that was pretty calm one, still after my little incident I think I might have been pushing my luck.

So at about 7pm Kerrie and mom go home for the night and I am just hanging out in my room. I for some reason need to get something off the ledge, but all I need to do is stand up make one step and get back into bed. Or what I should have done was ask a nurse or used the walker but I’m feeling adventurous so I try it myself and of course I land on the floor. So here I am sitting on my floor with ever piece of muscle in my body not working, I can’t move my legs at all. Worse the call button is at the other end of the bed. So I manage to crawl around my bed literally dragging my legs which won’t even go into crawl until can get the call button. Thankfully I had two super awesome nurses who did the quick check over but realized I was more embarrassed then anything and left me alone. I guess anyone that has ever broke and splint something can relate, but it is the worse feeling when your body just doesn’t do what it is suppose to do. It was like my knees and brain had a domestic meltdown in my body, Oh well babysteps kilby babysteps (still need motto)

And for those who are curious here is the story of Clive which I am pretty sure only me and Kerrie find entertaining. When you get radiation done the first thing they do is make a mask of your head to guide the lasers. They shape it like a cast mesh netting and then ever time you go to radiation they strap your head and mask to the table. Anyways on the last day of radiation I asked if I could keep the mask with me. Odd souvenir at least we can always turn it into a fruit basket. The name Clive was the first name that popped into my head and since he was the first thing there I decided he gets the honour of having the blog named after him.

Anyways that is all for this morning, should be able to see what type of trouble I can dig up this afternoon J

Cancer the little witch

I’m learning that cancer is one of those things that can either be the scariest word on the plant or some stupid little bitch that wants to ruin your day. Despite some early morning pill confusion I get through a pretty good night. The cleaning lady pops in and checks on me, at around 6am during blood collection rounds. I notice without meals it is so hard to figure out that you are suppose to be doing at any time which led to long times when you are doing nothing and then you realize you haven’t showered in three days. Doctor T shows up 8:30 nothing new to report, not only that crazy nurse from last night hasn’t shown up, so I do a swing through the bedside physio and theraputty exercises. Then I begin to feel a little like a trouble maker so I stand around the bed doing a couple of two stepping or just standing in place, laughing like a little kid. It might sound stupid but a week ago I couldn’t get out of need without an oxygen mask and when I first hit Sudbury I was forbidden from putting a toe out of bed without help from at least two nurses. Everything seems to be going so right I decided that I am not going to ask for help and for the first time in almost two months get dressed in real human clothes by myself and wait for the shop guy to pick me up. My dad is able to score me access to the rehab wood shop so I am in the midst of making a bird feeder. After an hour of sanding I am exhausted but pretty thrilled with the progress but by the time I get back to the room I’m ready for a little side trip to morphine junkie land and sleep off some of the pain.

Ended up with a really relaxing afternoon, watch some TV and generally chill out until later in the afternoon when I do regular physio which I happen to nail again, freakin nail it again, manage to get through the big loop, 10 minutes on the bike the only drawback is that my right arm is still acting like it is to cool to join the rest of the body so I’m in pain.

And then....... that stupid bitch comes back, cancer cloud that is. I get back to the room and Kerrie starts showing me my daily loot of things they pick me up either as some sort of physio or something to do, up today is Guess Who the game, hair clips (for the Monica) and a cursive writing book. And I lose it, just absolutely lose it. No reason everything up until this point has been a great day minus some arm pain which I get morphine up for and I am a sobbing two year old. I am realizing that part of it is timing I can’t remember long parts of the last couple of months so all I can see is this completely destroyed body where the rest of the family saw how it broke down and then started to rebuild its self. Problem is every time someone says I need patience I feel the urge to hit them with a hammer.

Baby steps Kilby, just remember your baby steps (I think I need a new motto). At least I am winning the world cup family pool J

Tomorrow the story of Clive and how after I spent the last two days bragging about my new found freedom I just did the greatest ass over tea kettle wipeout (don’t worry mom I am fine J)

The Nurse

So I think I am taking the plunge and going to publish this, I’m feeling a little nervous putting it all out there but I shall see how it goes.

Word of today is “unbelievable”, it is amazing after the nurse I had yesterday the shit show that goes down today. Night goes ok, I make 4 pages of notes (I feel the need to write down everything that happens don’t worry I got some weird stories that come up) nothing makes sense at all but in general good sleep. Wake up at around 5:30 widely optimistic, this is going to be a great day, there is this glow around the city like it is going to storm and since I don’t really go outside there is nothing wrong with that. I do a quick run through of my core physio which is just some exercises in bed that work on me standing better and walking better, then move on to some silly putty which is helping to get my hands to work again. (I pretty much have the muscle of a newborn zebra at this point, everything either doesn’t work or works with pain)

So by 8am everything is going good and then it hits me, the all consuming pain from last night just takes over my body out of nowhere (well we now know it was definitely the feeding tube). I call the nurse who takes one look at me and......walks out of the room, I’m begging trying to explain what is happening that I am in pain so badly I am ready to slice my body open.....and she suggests I take a few deep breaths. So know I really start to panic, I’m screaming by myself in my room as she leaves again muttering about how many patients she has and all this work she has to do. Half an hour has passed by this point and all bravery goes right out the window. I call mom to come in. Few minutes later the nurse shows up pissed as all hell and inform me that since I told my family she will “attempt to get the doctor out of rounds to look at me”. At this point the cleaning lady is the only one who seems concerned. Know I don’t think I am being too demanding when I say that being the only person on the floor currently screaming there head off in pain might bump me to the top of the list. Finally at about 9:30 I see the doctor who in about 30 seconds gets the whole thing under control. Mom has shown up by this time and thankfully there is nothing scarier then Jane on full fledge mamma bear mode. Unfortunately the only thing to do is wait it out which means I spend the rest of the morning in morphine junkie land.

The afternoon goes remarkably better however. Since I pretty much missed physio in the morning we decide to take a walk in the afternoon just with the walker. And I nail it, as odd as that sounds I managed to do this massive walk around the floor (I’ve only been walking for a couple of days now) not only that but a few days ago it took 3 people to get me anywhere and I managed a few steps by myself and I am getting pretty good at standing unassisted so at least I have my little victories.

Today just seemed one of those days that everything that could go bad did and everything that could go good did and as I am sitting here I realize that I need to plunge in with this blog thing. I feel the need to record just for myself this crazy ass adventure that I am on.

This is fair warning that I do intend this to be somewhat no holds bar account of what is happening. I was never that person, I think I would have been happy with me and the cancer cloud living by ourselves under a table somewhere, but the first lesson cancer will smack you with is that you need your family and they need their family and friends become little parts of everyone’s family so they all get squished in there and you have this giant group of people that are going to assist in the ass kicking of the evil cloud and ensuring your fridge is stocked. The cancer patients’ only real job is trying to avoid throwing up on someone’s shoes.

So here is a little bit about my day. One of the things they never tell you about brain cancer is how much it affects your mind. I was never ready for this part. So at 3:30 I wake up furious at every single person in the world (really 3:30 last night I hated every single person), Decide to go for the anti anxiety pill and manage to sleep until 6 which is almost a record for me. Unfortunately my well thought out plan to do physio turns into a better plan to watch some old Simpsons and get a haircut (which I still have but it falls out all the time, I keep threatening to shave my head but my mom is against the idea) current hair is Monica Gellar around 94.

The rest of physio went well, small victories are the ones that count, for the last two days I have been able to stand without help and it only took me a few days from walking my room to getting around the floor. Also was able to spend about 20 minutes on a bike. Whenever Of course by this time I am so exhausted my energy for the day is gone, but it was a good hour.

Today also happens to be the release day of Sarah Harmer new cd. Since I always get her CD on release date Kerrie goes out to get me a copy. And this is where the brain cancer does it's dirty work. First all the regular arm side pain is back, could have been the over exercising but it still doesn't work. The next thing is I can't transfer the cd to my mp3 player and I just lose it. The pain, the cd, how no one is listing to me I can't figure anything out. So I sit and bawl for awhile. Luckily Steph and Aaron come in to snap me out of the funk for awhile. They all take off around the same time along with my mom and sister so I doubt they even make it to the parking lot before inside shit is hitting the fan.

The whole story starts with my mortal enemy at the moment (other than the cancer of course) my feeding tube. As soon as they leave I get hit by a wave of unbelievable pain at the entrance site probably some of the worse pain I have ever had so far. She starts with the drugs, morphine, tylenol, anti anxiety more morphine plus at some point some gravel appears. She also offers to stay with me even though her shift is up. I decline and tough it out, as much as whimpering in the fetal position with my one tough chick hat is toughing it out. Thankfully the large amounts of drugs know me out completely at one point. I finally wake up at 9pm high as a kite but no pain, got to love morphine.

So hopefully this becomes the first post of many into the crazy world of my brain tumour, the plan is to go back and explain parts from the start, but what do I know I’m still high.