I woke up on the morning of the third to the sound of heavy rain, gusty winds and the sound of the weatherman on the radio telling me that we were in the middle of the storm of the century. "Sure", I thought. I decided to go to Melbourne anyway, three hours drive. I thought that in three hours the road would be all clear and the storm would have passed.

By the time I got to Melbourne that storm had passed and the sun was shining, but there had been so much water that the roads were all still cut. I thought that I would take a shortcut and got caught there as well. I decided at this stage to head back to the highway and see how things were going there. I turned onto a road and could see the highway about one and a half kilometers in front of me, unfortunately there was also about half a kilometer of water as well. I was debating driving through the water when a car crested a small rise coming toward me. They were going way to fast when they hit the water and the car aquaplaned and then disappeared into the table drain. This was around five or six feet deep in water. As there was absolutely no one else around I had to run through the water on the road to where they were and jump into the water and help them to get out of the car. As a result I was soaking wet, late for my appointment, and ready to go home.

So to cut the rest of the story short, I rang the hospita,l changed the appointment and came home again. Pretty frustrating when on a normal day I was only half an hour from the hospital when I turned around!!

So I am now off to the respiratory clinic on the 24th of this month to have the enlarged nodes checked out!

Hope I get there this time!!!

As far as the silly season goes I had a hell of a one. I got called to a job on Christmas day that involved recovering the bodies of four drowning victims. All from the same family. It was a very sad day.

I am trying to recover from that still. Not sleeping too well yet but it will get better. I hope everyone who reads this had a nice Christmas at least before the boxing day tsunami's throughout Asia. I shed a tear last night for all of the victims who did not survive and for all of those who lost someone.

Here is to a new year. I hope that for me that it is not as eventful as the last twelve months.

I decided after my last lot of scans not to worry about having cancer until I had to go back for more tests. It is definitely working for me!!! I have definitely been living again.

I work as a cook at a church camp at a nearby town and at the moment we have a group called canteen staying with us. For those not from a Australia canteen is a group for people aged 14 to 24 who have cancer. It has been a bit of a reminder to me of just how lucky I am. The group we have now is only Victorian kids but in a couple of weeks we have the national camp staying as well and apparently the kids in the national group are a little sicker than the ones we have now. I am sure that I will come home every night and cry, but at least I can make sure that their time at camp is great fun!!!!!

Anyway all the best.

As far as things go I have been soooo busy at work that I do not have time to scratch let alone do anything else. It probably isn't that bad but it sure feels like it!!!

I still have the three lumps in my neck and another in my groin now to add to it. I am not going back to the doctors about it though as I get the feeling that they think that it is all in my head. I know that it isn't because my hubby can feel them also and the ones in my neck are just visible.
I am not worried as MALT is a very very slow growing cancer and it is only two more months until my next scan so I can wait!!!

I don't think I have any other symptoms other that being absolutely exhausted all the time. I just have to have a sleep in the afternoon sometime or I cannot make it to the end of my shift. (7:30am to 7:30 pm) I get a break around two o'clock so I try to get fifteen minutes there. If I don't I just cannot function properly.

I have been fairly well other than that and this weekend just gone I got to do search and rescue training with the police search and rescue squad from Melbourne and the police airwing (helicopter), also from Melbourne. It was awesome!!!!!!!!!! I had the most amazing time and learned heaps. Hopefully they are going to make this into an annual event. I hope so.

Anyway I've got to go. Need more sleep !!!!!

I went to the oncologist in Melbourne on the 13th of October. Things look really good for me. I now officially have three months to forget about the fact that I have cancer. I still have not really been told that I am in remission so I have to wait until the 19th of January 2005.

They doc was really pleased with my progress and seemed to think that because the swollen nodes in my neck haven't grown they are probably nothing to worry about. I have a CT scan booked for the 12th of January and the results will be ready on the 19th of Feb. If the scans are clear then I plan on trying not to think about cancer for a while. I will probably still post though. It's good therapy to be able to get your thoughts down on paper. I am sure that I will be able to reflect on how this has changed my life once I have a little distance from it.

Anyway. All feels well with me right now and I am hoping that it stays that way for a while. I am working full time and exercising every day. I try not to eat too much crap and in general am taking better care of myself than I have in a long time.

In Australia we are heading into an absolutely spectacular Spring and everything is growing and flowering and all of the other things that go on in Spring so I guess it is really easy to be positive!!

All the best
Kylie

Well he gave me a glowing report and told me that I take marvelous care of my teeth. This is probably because I have an absolute phobia about bad teeth. Not just that I don't like them, they make me get totally irrational, especially if they are mine.

So I no longer have to see him. Unless I have to have more treatment. Fingers crossed for not. I do however have the problem that my saliva has gone from being viscous to being like water. It is amazing how much harder it is to eat things without sticky spit!!!!

Anyway enough of grossing you out! I do not have to go to Melbourne again until the 13th of October and hopefully I will be able to go onto six month visits after that. No other real changes with the health. A few strange lumps and bumps but no new ones. They get to probe them again on the 13th, so I'll just wait and see

As far as my health goes I feel pretty ordinary!! When I sit down at the end of the day it is almost impossible for me to stand up again. My hips ache so bad that it is excruciatingly painful to walk and even sitting for too long causes discomfort. I have also developed an old problem that I use to have. I use to bruise really easily and they were great big black and purple things. Well they have come back again. I am probably just being to rough on myself and don't realize it!!

I go and see the dental oncologist on the 23rd of this month to have my teeth looked at. After radiation to the lower jaw I have some problems with dental decay. I find this really annoying because before this I had perfect teeth. In the last Month my saliva glands have also started to dry up. The radiation oncologists told me that this would probably happen. This can cause more problems with decay and it also plays havoc with your digestion.

Other than that I am fine and life is being good to me. I hope it is being good to all of you as well

Anyway I'll be back on Wednesday to update. Keep sending your healthy vibes my way

My doc then asked what I thought about the lumps and I told him that I was not to happy with them. He said that he wasn't either so I am now off to have another CT scan on Wednesday and them I go back to my onc on Wednesday next. I was supposed to see the onc on 13th of October so this is a little sooner than anticipated. So everyone out there who reads this, keep your fingers crossed and wish me luck. I would hate to only get three months remission out of this.

Sorry that it is not the best picture. I will try to get a better one soon.

I have made an appointment to see my local doctor on Tuesday and fingers crossed that it is nothing and I can just go on living.

I am so stressed out. I am definitely not getting a good feeling about this. There is no pain at all with the swelling but I am absolutely exhausted all of the time. Maybe it is all in my head. God I hope so!!!
Anyhow fingers crossed 'til Tuesday.

On the health side of things I have been having fevers on and off for the last couple of weeks. I also have a couple more small bumps under my tongue. I think that these bumps are just scar tissue though.

What a life hey? Thinking that every little bump or lump is the cancer coming back!!! I'm not really that bad but sometimes it can get the better of you. I firmly believe that this is not going to kill me but it is certainly going to make my life more interesting. Personally I would settle for normal at the moment.

Reflecting on this experience so far though, I have to say that I really like me more as a person now than I did two years ago. I have had so many confronting situations present themselves to me in the last two years. I feel that they have all made me far more patient and accepting of other people's needs. I am also, however, far more likely to cry at the drop of a hat. Strange for someone who has always been so stoic and never shared emotions.

I definitely like the new me more!!!! Growing is what it is all about hey. Anyway I am off to poke and prod my lumps and bumps some more and try an convince my overactive imagination that they are perfectly normal!!!!

I went back to Peter Mac today to get the results of the lymph node biopsies from my chest. It turns out that I am in the 8-10% of lymphoma patients that also suffer from a disease called Sarcoidosis. This is a better diagnosis than more lymphoma. I will have to read up on Sarcoidosis now.

I met the radiation oncology intern today. Her name is D.r Campbell and she is absolutely lovely. She explained a little to me about the side effects of the radiation that I will be having! So I am definitely having radiation and no chemo. I am pretty happy about that.

So now that treatment is decided on I have to go to the Royal Melbourne Hospital tomorrow to see the maxillo-facial surgeon about my wisdom teeth. More surgery.

15th April 2004

The Maxillo-facial Surgeon at the Royal Melbourne says that it may take two weeks to get onto a list to have my teeth removed. This is not too bad considering the wait for a normal patient is two years! He also informed me that there is a definite risk of loss of sensation in the lower half of my face as the two lower teeth are wrapped around the mandibular nerve. I kind of already knew this! When I arrived home tonight I got a phone call to tell me that I am on the list for the 20th of April. Crap!!

19th April 2004

I went to the Royal Melbourne today for my pre-admission clinic appointment. I only had to wait for two and a half hours to be seen, got poked and prodded and psyched for the operation tomorrow only to be told just before I left that the list had been cancelled due to industrial action.

21st April 2004

I went in to work today and sorted out time off and sick leave. They are really understanding.

23rd April 2004

I got a phone call from the Royal Melbourne today to confirm surgery for tomorrow. They also let me know that I may well be cancelled again due to ongoing industrial action by the nurses.

24th April 2004

What a pleasant experience that was. I suppose at least this time I did not have to wait all day. All four of my wisdom teeth are gone. I have some nerve damage and as a result can feel nothing from my bottom lip down. They say that this may be temporary. It is very odd not being able to feel your bottom lip or chin!!

25th April 2004

I am home again today. I have to say that today is not a good day. I am seriously considering refusing further treatment. It is definitely not a natural thing when you are feeling fine, to force your body to submit to procedures that are going to cause huge amounts of pain. I am not happy. I feel fine or just start to feel fine after the last procedure when all of a sudden I have to subject myself to another whole world of hurt. I do not like it. The lack of feeling is driving me mad and the pressure from the swelling is extremely uncomfortable.

28th April 2004

Follow up with the maxillo-facial guys today. They are happy with how things are healing. They feel that the sensation should slowly return to my lower face. It took three hours to get there for a five minute appointment and three hours home again. There goes another day. Back to Peter Mac on Friday

30th April 2004

My appointment today was at the molding room at Peter Mac. They were really nice people and made me feel at ease. I was a little concerned when they tried to draw on me with a special marking pencil, only they forgot to oil it first and nearly took the skin off my neck with it!!

They made a pillow to support my head out of this stuff that is like expanding foam which moulds to the shape of your head. After that they made a thing for my mouth called a bite block. It is a big hollow straw with this stuff that looks like grey playdough on it. They put it in your mouth and make you bite down on it until it sets. This will hopefully keep my tongue out of the field of radiation. After the bit block was made I had to have a mask made. This is able to be clamped to the table that you lie on and is used to keep your head perfectly still and in the same position every time you have radiation. To make this they have a sheet of hard plastic that is soaked in hot water to soften it up. Once it is soft they press it down over your face and mould it to all of the contours. When It cools down it sets hard again. Oh yeah there is a hole in it so that you can breath. Once this is completed they get you to put all of this stuff on and then have a CT scan just to make sure that they are zapping the right place.

I also met my primary care nurse today. Her name is Nicole. I also remembered to tell her about a lump under the other side of my tongue. She got me in to see the radiation onc who thought that it was probably nothing, and even if it was it would be in the field of radiation anyway. So now I wait until the 11th of May for my first treatment.

11th May 2004

I finally managed to find the place I am staying at in Melbourne. It is too far to travel from home every day for treatment so I will stay here during the week and go home on the weekends.

I had my first treatment and the guys on my unit are all fantastic. They put me right at ease. It was nowhere near as scary as I thought it would be and all over in about ten minutes. They tell me that this is the longest appointment. The others will all be about five minutes. I was expecting that the side effects would take a while to kick in but my spit is gone already!!!

12th May 2004

Second treatment today. I slept most of the day and went to my appointment at 4:20pm. They were faster today. It seems like a waste staying in Melbourne for ten minutes treatment a day. I think that my mouth feels tender already. It may be in my head though!

13th May 2004

Another treatment today. My primary care nurse made an appointment to see me today and then forgot and went off and did something else. That is the second time this week. Not Happy!

14th May 2004

Last treatment for the week today. I was to catch Nicole today before I went but she forgot again. What the hell use is a primary care nurse if you can't bloody see her!! I had a hissy fit and told them that perhaps I should have a different PCN. She rang me on the way home and apologized for missing me. Then she tells me that she is on holidays for the next three weeks. Great! Anyway enough of that. I went home early today because tomorrow is my mother's 50th birthday.

15th May 2004

All of my mums family is here for her birthday. This is the first time ever that my mum and her sisters and their mum and dad have all been in the same place at the same time. EVER. The best part of the day was when Mum and her boyfriend surprised everyone by getting married. I got to give her away!!!

17th May 2004

Back to Melbourne to start again today. Most of the family has started to dissipate after the weekend. Treatment went well. I slept most of the day. I only woke when my cousin rang from the airport to say that she had missed her flight!!! I was too tired to go and see her though.

18th May 2004

I had treatment this morning and then had to meet mum to pick up my little brother, his wife and two kids. They have not been getting on well and today was the day that it all blew up. Unfortunately it was in my car while we were driving around the city. I was tired an miserable and it was too much for me to hold my tongue so I let them both have it with both barrels. Needless to say that it made for a really pleasant day. Anyway I got them dropped at the airport and on their merry way.

I also got a call from Kev, my hubby. He is in hospital at home with severe gastro. The poor thing. Wish I was there to look after him.

19th May 2004

My mouth is definitely starting to get sore now. I had an appointment with radiation oncologist after treatment today and they tell me that if my mouth is not too sore at the end of next week they will continue to 30 treatments. Got lots of sleep today and feel much better for it. Kev is home again but still very sick.

20th May 2004

Treatment went well today. My friend Chas was supposed to be coming to visit today at 11:30am. She finally rang at 1:30pm to say that she hadn't left home yet. That is three hours away. So I won't see her today. She is going to come in tomorrow morning.

21st May 2004

Had treatment this afternoon and my mouth is really sore. Chas came in today but she bought her mother with her. It was really good to see them both but dang! They are high maintenance.

There seems to be some confusion as to whether I will continue to the full thirty treatments or not. I guess I will find out at the next oncology appointment. Home for the weekend now.

24th May 2004

Back to treatment this morning. My mouth is definitely sore and I now have two really rosey cheeks to go with it.
Chas rang and said that she will be in to pick me up in the morning but I told her that I wasn't up to it. I didn't want to hurt her feelings but I am too tired to entertain people.

25th May 2004

Got zapped again today. Nothing new. Got out an went for a walk by myself. It was very relaxing.

26th May 2004

I had an appointment with the radiation oncologist this morning and he tells me that today will be my last treatment. I was a little confused by this so I asked him why it was being cut short. Apparently my initial treatment was to be only to one side of my head but after the second lump that I found they decided to do both sides of my lower jaw at the same dose. This meant that I was getting double the dose that I would have been getting originally so they felt that I had done the full course of treatment. YAY!!! So I have my last zap at 12:10pm today and then I can go home.

27th May 2004

 I had another checkup with the maxillo-facial surgeons at Royal Melbourne and they are very happy with how things have healed. I was left in the waiting room for over two and a half hours because they had crossed my name off as having been already seen. I was a little cranky.

9th June 2004

Back at Peter Mac today for a post treatment checkup. All is going well. There is an enlarged lymph node on my right lower jaw but this may just be from the treatment. I also have a suspect lump in the back of my throat. They are just going to watch this and see if it does anything.

10th June 2004

Appointment with dental oncology today to check on my mouth. They are happy with how well it is recovering from the radiation and feel that any side effects will  only be temporary.

16th July

Had an appointment with radiation oncology today and now I have to say that I am really confused. I have not had one test at all since I finished treatment but the doctor came in and told me that I am in remission. I was happy to hear it at the time but now that I have had time to think about it I want to know how he knows. I guess I will just take his word for it. Anyway, My next appointment is not until the 13th of October.

I think I am going to feel a little lost not having to base my life around cancer anymore. What a strange thought!