We are Home!

Hi Everyone!
Wow, it feels like forever since I wrote in this journal.
We are back from Queensland in North-Eastern Australia. It was a wonderful holiday. We went to SeaWorld there and visited the man made glo worm cave. We went to parks and for walks and to a place called O'Reiley. At O'Reiley there are parrots which sit on your head and shoulders and anywhere you put food. They are so tame. You busy special seed and feed them. Isaac was rather frightened at first but after we went on the Tree Top Walk he told us he thought he was brave enough to have a bird on his head. He enjoyed it SO much. I have pictures and need to put them on here so you can see. The Tree Top walk is exactly that.....we are on a big mountain and they do bridges high into the trees that you walk along. It is very high up and can be a little scary, but it is beautiful. Isaac wasn't scared at all!
We also went to visit the Strawberry Farm, but unfortunately when we got there they were closed due to being burnt down. It was so disappointing. They make special milkshakes and icecreams with whole strawberries and have an animal nursery where you can feed baby animals with bottles of milk. But it was closed. Isaac was so disappointed and to be honest, I felt really sad. It is something that my family did every time we went to Queensland and we went every year for a long time. My dad's family is up there. My grandparents lived there to so we used to do all sorts of fun things.
What else did we do? Thinking.....um....we stayed on the moutain with my Aunty Shirley and Uncle Bob. They have 2 acres of land and there own banana trees and avocado trees and nuts and stuff. They let Isaac ride on the ride on lawn mower and Isaac also steered it. He thought that was great. One day while he was sleeping Alan and I went around the yard and took nice and funny pictures of each other and the yard for memory sakes. I need to get the photos printed from my digital camera so I can make up our family album of our holiday.

We walked up hills which I surprised myself. I have been so well while away and felt most of my worried go. I had a break from the medical world and lived in fanatsy for a while.
At SeaWorld we went on rides and saw dolphins and shark enclosures. Isaac went on rides with us and loved it. He loved going on a ride which was a water one and at the end you come down a steep slippery dip in the small boat and get wet. He squealed all the way with laughter and it was great to watch him have so much joy. I also loved that ride. I squealed along with him. It was so much fun. We went to Sesame Street section in SeaWorld and I also went on all the children's rides with Isaac which I must admit, was very fun. He is so adventurous now.
Isaac turned 5 years old while we were away on the 8th November. He was so excited at his birthday. We had a party with my cousin and her children and Aunty Shirley and Uncle Bob. It was great! Isaac loved their children...particulary the youngest who is 12....Michael is his name. He followed Michael everywhere. Michael was such a good sport and played with Isaac.

We went to the Brisbane museum on Isaac's birthday and on the City Cat boat on the river which goes fast. We did a lot. Some days I was so exhausted we stayed at home. However, I have not had so much fun for a long time.

I was ready to come home to my house....but not ready to enter back into normal FA life with all the appointments and infusions and stuff.

So today....only the second day home I was due my IVIG infusion and I had a really yucky day. First of all it was 34 degrees celcius today and the cancer center is in a warehouse. They didn't turn the air-conditioner on and I become heat affected very easily. I get heat stroke very easily and then my body becomes a furnace and I have trouble cooling down. They also sent an inexperienced nurse to put my jeclo/IV access in and draw blood and she did so badly that they IV access bent so badly that I was in so much pain and they couldn't get my infusion in. The blood was taken badly that it clotted and clumped and they were not able to do my counts. I finally asked for a nurse who had done me lots before. However, my veins all collapsed and I was stuck another 3 to 4 times before a jelco was in. I then felt so sick because they had put hot blankets on me to help my veins and with no air-conditioning my body heated up and I had to run to the bathroom because I felt I was going to faint and throw up. I threw water all over my face. This happened 2 to 3 times today. I cannot have the infusion run fast because I react and so I insist upon the rate that I can handle and then the nurse changed it when I had my second bottle up to see how I would go and I began shaking and really cold, yet still feeling like a furnace and had to run to the bathroom again fearing I would throw up. They then put hot blankets on me to stop the shivering and I didn't want them but I felt that I HAD to have them even after refusing. So I became over heated and had to run back to the bathroom and put cool water on my face. I then asked for ice to suck because I was so hot. Eventually I asked if the air-con was on and the nurse said she thought so only to come back and tell me sorry it had been off! I was so overheated I felt horrible. I insisted on the infusion coming down to the rate I can handle and coped a bit better. My arm is covered in bruises from their attacks of putting the jelco in and I am unimpressed. I think anyone...whether they even had really high platelets...would suffer bruises because it really hurt badly today!
Thanks Denise for being with me today. I got through it and am now at home. So this was not a nice start to medical things for me after my holiday. I was horrified. I wanted to cry so badly.
do you think I am complaining too much...sorry if that is what it feels like.
Hopefully this week won't have bad IVIG reactions because of them running it too fast today at some point. Last time they did that I had a very bad week.
My favourite nurse was not there today. The male nurse I spoke of last time. I know he would have spoken up for me today and he would have been checking if I was all right.
It is my neice's birthday this Saturday. She turns one. We got her "My first Rider" for her birthday. Hmmm...it is exactly what it says...a little rider for her. She is now crawling and pulling up a bit. I have not seen her for about 6 weeks. She and her family went on holiday and when they were coming back we were leaving and so we missed each other.
Hmmm...how do I put photos on this site. I will have to ask Alan. I want to post some of my holiday.

Let me see...hang on....ok, I think my next post will be the photos. Alan is busy right now and i need to wait until Isaac is in bed.

In a couple of weeks I have another ENT appointment to check an area on my tongue...under it actually. We have been deciding whether to biopsy it or not. It actually has vanished a bit.....we were not sure if my bouncing neutrophils were causing all the ulcers and stuff....this white section actually peels off part of my tongue. I have not got a sensitive spot there anymore and I can't see white at the moment. So we will have it checked again. I am also due my annual scope for head and neck cancer and my annual MRI of my head to routinely check for cancer.

I should be able to have that big gynae surgery in January. I have been very well. I am hoping to get back to work for a shift or two before Christmas....not push it. And be back at morning church soon. I am doing well with energy levels and I know my boundaries very well. I just need to work within my boundaries and know that people realise I am doing my very best.

Well that is all for now. Thanks for checking up on me. I will try and post photos very soon.
Love Charisse