New!

Sorry I haven't updated the blog in a while. I have been very tired/busy. Hmm not so much has happened since I got the line put in. I no longer have to have blood tests because they can draw blood from my line which is a plus. The site and the line itself however, are still very sore. I have to be extremely careful with it, I am not even allowed a bath with it because it literally is a tube into my heart vein.

I am currently on leave from the hospital until Friday. Thats when I get my next dose of chemo. Chemo is pretty brutal stuff, at the moment I am just starting to experience the serious side effects of it. Your appetite changes, you want to vomit all the time, you constantly feel like you have the flu. An example would be today when I was at the supermarket. I have to go on a special diet for the next couple of months to lower the risk of me getting an infection via food. This means no eggs, hard cheeses and fresh greens. Everything has to be piping hot and cooked. On top of this the huge appetite and taste bud changes that come with the chemo treatment make it really hard for me to actually eat relatively healthily. Anyway, I was at the supermarket in the lolly isle choosing some lollies. I was picking out some sour ones and saw those little marshmallow mushrooms lollies. I nearly spewed in my mouth. If I didn't hold it down I would've vomited all down the isle. This is how extreme and rapid the food thing is with chemo, literally one moment you're wanting some specific food then 5 minutes later even the thought of food makes you get that stomach bile taste.

Oh on a completely different note, one of my pet female turtles laid an egg. We were cleaning out the tank and we put all three turtles (one male and two female) in a washing basket while we refilled the tank. When we went to put them back in we saw that one had laid an egg! I rang up the pet shop and got instructions as to what to do. I made a little bed for the egg out of an ice cream container, cotton wool and tissues. I went back to get the egg and found one of the other turtles had eaten it!!!!!!!! I was a bit disappointed but oh well, maybe I will get another some other time.

If you would like to visit me, you should try do so before Friday. I am starting to get quite ill and I will be getting more chemo soon. Next week you will also need to be more careful if you're feeling at all unwell. My white cell count is going to fall quite rapidly and if you carry bacteria from a normal cold into my house I could be hospitalized. So just be aware, you have to be healthy to see me.

My hair has started to thin a bit (I think?) so that should be due to fall out soon.

I have best be off to bed now, its 1:32 am and I have a nurse coming tomorrow to flush my hickman line and take bloods in the morning.

Can't type for very long. I have been given my sleeping pill already. Yesterday I had my operation for my hickman line. I was really scared about this one, as this was probably was first "official" serious proceedure. It actually involved going to theatre and all that stuff. Ok so heres what happened. I was told I couldn't be put to sleep for the op because of some clots that had developed in my lungs. This meant that I had to only have local anasthetic and as little sedation as possible. So, I was wheeled down to theatre. Filled out some forms, asked the questions you would normally ask etc. Then I was wheeled into the operating room. The nurses were running around preparing and the surgeon was gowning up. I noticed he put on this clear perspex window thing over his face. I assumed this was to stop blood squirting in his face during the surgery so I totally expected to be bleeding heavily during the op. This freaked me out even more. I didn't want to open my eyes during the op and see my artery had been slashed open by accident and blood was pumping everywhere. Next, I was given blankets and the site was isolated from the rest of my body. They put iodine on (a orange disinfectant dye) where they were going to cut and covered me up in pre-warmed towels. Then they put the local anasthetic in. Instead of selective injecting in in a few spots the surgeon used a big needle and when he pushed it into my skin, just skewed it around on a angle and moved it all over the place. It hurt like freaking crazy.
Then he said "can you feel this?"
I said "YES" (I couldn't actaully feel it. I just said yes to make sure the spot was properly numbed)
He said "Give him a small amount of sedation"
The night before I hadn't slept, in the hope that, if I did receive sedation, it would make me fall asleep. It didn't.
So I got given some more local and then they put a veil over my face. They then begun the op. As far as I understand they cut small line into my upper pectorial muscle and pushed a tube into one of my big veins coming from my heart. They keep movin my shoulder and checking the position of the tube which scared me a bit. Xrays were taken mid-op blah blah. I went to the recovery room and had to lie in my own blood from the op until I could go back to the ward half an hour later. Overall, the op was a success but easily the most frightening thing in my entire life thats ever happened to me. Just during the operation knowing they are cutting into you and seeing your insides while I am still conscious and alert really freaks me out. Felt like I was in E.R. or something tbh, thats how tense it was. I will continue this post tomorrow with more information on the hickman line itself and stuff (can't remember if I explained what it is)

First lot of pictures. The hand one is a side effect from the chemo, my skin peels like crazy! But only on my hand for some reason. The arm one is just a sneak peek after a lot of blood tests.

Sore

I had the lumbar puncture yesterday. I will tell you a little bit more about this. When I get chemo it travels all around the body, killing cells. The only place it can't get to is the spinal fluid. So what they do is... extract some of my spinal fluid and put the same amount of chemo into my spine so the chemo cells can travel around there and do their stuff.
Anyway, I had this yesterday and was really nervous. This is what happened:
The nurses came in with the Doc that was going to give the injection. I was told to roll on my side and adopt the foetal position so he could feel my spine. He then drew all over my back with a sharpie to mark out where he was going to go and got a house surgeon to double check it all. I was told to lay dead still from now on so the needle would go in the right place. The local anasthetic was injected in, then he kept prodding me and asking if I could feel it. I said yes even though I couldn't just so I could get some extra numbing stuff. Then he shoved the needle into my spine, took out some fluid and put the same amount of chemo back in. It took altogether about 15 minutes. I had to stay perfectly flat on my back from 6 hours after that though in case some spinal fluid leaked.

Tomorrow I have my first proper operation. It is called a Hickman line and its a permanant tube sticking out of my chest. This is how I will receive most of my medication I need and bloods can be taken from it etc. The surgeon doesn't want to put me to sleep for this though so I will actually be watching the scalpel cutting into my chest and shit. When I get this line in, it will make me look like a more legit cancer patient. You really need to look after it though. The dressing on it will have to be changed constantly and it cannot come into contact with water (no swimming, beach, bath, pool etc.). Also, because its literally coming out of a hole in my chest it is very very painful so I won't let anyone touch me for a while. The hickman is meant to stay in the majority of the time I am on treatment (2 years) so I am not looking forward to it at all. I'm considering not ever posting pictures of this one because its simply too much even for me to handle, you semi become a true cancer cripple you know?

Skin

So I really can't be bothered updating the blog every single day because I really don't find I have much to talk about sometimes. I will still update it most days however!

Today I had my team of haemotologists (blood cancer specialists) come in and talk to me. I have responded well to the treatment so far and they are pleased with my progress. My kidneys have held up well to the flushing out of all the cancer cells and my bloods are starting to stabilise. Its some progress.

Anyhoo.... I found another side effect of the chemo. My skin on my left hand has been drying off anf becoming all scaly its pretty horrible. I have to use hand cream every hour or so otherwise my skin just flakes off in huge chunks. bleh!!! I have also lost some of my taste buds. Beef and lamb taste like chalk to me and I am constantly eating strong flavoured foods to try and get a taste in my mouth. Thank you to Emma Quigon (sp?) from Cafe Express for dropping me round a chicken salad. It was delicious!!!!

I got a visit from Anita today too! She is really good at....boosting you? That feeling when your down and feel crap and then someone/something gives you like a boost of energy? It was the first time in a while I actually forgot I had cancer. Thank you Anita :)

I really want to write a paragraph on how awesome Miriam and Jim are but I am so nakkid(as in "tired"?) that I can't manage it tonight :(

For the first time I was allowed out home for a couple of hours tonight. It smells really weird being at home where things are not as clean as the hospital but I enjoyed it nonetheless. I was getting quite weird looks as I was walking to the car in my Spock tshirt, boxers, dressing gown and crutches. I think I pulled it off though.

Tomorrow, I have a pretty serious proceedure that I am worried about. Its called a lumbar puncture and what they do is inject chemo into my spine. I assume this is to get rid of any cancer cells in there. My only worry is that I will be under minimal sedation during this and I'm just a bit scared of the pain.

P.S. I know i have promised pictures, dont worry i will try tomorrow. I have taken tons so you can see the aftermath of some of the things that get done to me.

Day 5

Whats up :) I'm starting to feel the early effects of the chemo now. It has altered my taste buds a wee bit and all meat tastes like wallpaper, its' horrid! I had a bit of a weird feeling today too.... I was lying in bed and started getting random muscle pains. they would last maybe 6 seconds then switch to another limb (forearm, calf, chest etc.) I started getting short of breath so the doctor was called in. They were getting quite painful so I had a large dose of morphine. It turns out the chemo can affect your body in tons of crazy ways I didn't even know about. The pain and shortness of breath in my chest was due to the cartilige contracting around my lungs with the muscle spasms. The contracting was a result of the chemo.
Also, my urine is red. One of the chemos I received yesterday dyed my urine red. To be honest I am liking the change in urine colour, makes me feel quite cool.

Day 3+4

Im going to squish two days of my "cancerpade" into one post. So yesterday I went to the dentist at the hospital, I have to have some teeth removed to reduce the risk of getting an infection during treatment. So that is scheduled in for next week with the oral surgeon. The rest of the day was spent talking to dietitians, physios and the like.
After school today I received a lot of visitors. It was awesome to have them see me but there were so many I couldn't handle the excitement. I remembered I had to be off to a test and jumped out of bed and ushered everyone out. As I was hopping in the elevator someone knocked my drip and blood started flowing EVERYWHERE. It was gushing onto the elevator floor so I ran back to thee ward in my dressing gown and boxers while Ella ran ahead to ask for help. Was really funny to be quite honest.
Today was my first big proper dose of Chemotherapy. Jim, William and Rachael were here to witness it. It feels quite unusal receiving chemo, almost like someone is pouring freezing water diretcly into your blood stream. I am coping with it relatively well at the moment but it wont take long for the side-effects to start kicking in. This brings me to the next big change you might see. Hair, or lack of it. I might get some wigs this time, any ideas?

Thanks again for all the visitors and little gifts I have got, I love them all :)
I have probably missed out a lot but i will try to stay on top of this blog so you can have an idea of whats going on. Pics are incoming!

Day 2. I was meant to write this last night but I was way too tired. As soon as I get the camera cable I wil add some photos to the blog. Soooooo.. yesterday I had an ultrasound on my leg because it has been really really sore. There are no tumors thankfully in my leg it is just bone ache from the leukemia, I just have to have morphine, codine and paracetomol (sp?). I'm sorry about the format the blog in, it is not very well written but bear with me!
I had a CT scan (the huge donut xray machine) and had to drink some dye to make my veins and organs show up on the xrays. It tastes digusting! and just before they are about to start the scan they give you a drug that warms your whole body up. It seriously makes you feel like you need to pee its' such a weird feeling :P
Bad news now, I have a lot of little blood clots inside my lungs and this is quite serious. These clots have made it hard for me to breathe so I am on blood thinners to break down the clots. The thinner is called Clexane and I have to have daily injections into my stomach. It really stings!
My leg is also very very sore and painful. I can't walk at all because the bones in my feet and calves are extremely painful so I am stuck usually in bed, wheelchair or crutches. I have been put on steriods too and these have made me extremely moody and angry. I hate them.

Isn't it weird that when things are going ok a lot of people ignore you or never talk to you? But as soon as you are in a horrible position or something awful happens they pretent to like you and be best friends with you? Why do they do it?

Thank you for all the messages of support but can you please not ask "Are you alright?" obviously I'm not fucking alright, I have cancer. A lot of people have been asking if I need anything, I don't mind what you bring I assure you I appreciate every single thing it all helps.
Especially letters from people :)

One final note. Don't be afraid to offend me or treat me different. I am still Alex and if you do change how you would normally act I promise you I will never talk to you again.

Anyone is welcome to visit me. I am on Ward 23 in room 8. Give me a text before you arrive just so I can actually be here when you come. :)

Day 1

Day 1. I had 5 vials of blood taken in the morning to chek everything and get a more accuraste disagnosis as to what type of Leukemia it is. Later that day I had a bone marrow biopsy, this meant getting a larger needle into my hip bone and extracting a bit of bone marrow. I will most likely need a bone marrow transplant from one of my sisters , but we need to make sure we get a match. After this I had a couple of chest xrays just to see if there were any addiontal tumors within my body (haveen't got results bac yet) but I'm pretty confidnt I don't. Umm what else is there to say... oh they found it when I was having a routine blood count to check if I still had glandular fever and my white cell count showed up as 210 and the normal amount is 10 so they knew something happened. A huge thanks to everyone for the supportive messages I mean it! Sorry if I didnt reply back to your texts I have a line in my hand and I couldn't text. Also, thanks heaps to Jenny Mcwhannell (I hope this is spelt rihgt sorry :P), Chris CareySmith and Anna from CanTeen. I will update this as I get more details anfd results! Lots of Love, Alex

If you have any questions at all please ask me I will do my best to answer them. Seriously ask anything you want!