22nd and 23rd October 2010
I was so nervous as I waited to go to the airport for my unexpected flight to Sydney, the butterflies were fluttering at a hundred kilometres an hour and did not want to stop, I also had this terrible feeling like the ones I had during chemotherapy when things did not quite go as expected.
In the morning when Jarrett and Nalani went to school, they were both crying and so was I as I gave them a huge loving hug. Jarrett asked if he could come to the airport with us to say goodbye but we told him that school was more important.
After checking in at the Qantas desk we were told that the plane we would be flying on was on the Tarmac and we would require a special lift to get me onto the plane. We waited patiently for the special assistance person who was helping us to come. We got to walk where all the action was taking place with the busy Qantas Staff getting everything ready for various flights. I looked ahead and saw a spectacular bright pink Dash 8 aircraft sitting on the Tarmac, it was a special breast cancer one, it was our plane. The special lift came and I got to go in a little wheelchair and went up in the caged lift, it was quite an adventure. On the plane our seats were right near the propeller so I could see it slowly start to gain speed and take off. I thought having a pink aircraft was a good omen.
On the plane I remained quiet and in deep thought, I know that I am a strong person and very determined but do I have to face this many obstacles and being dragged away from my home and family makes me feel angry and upset. When I mentioned to the Airline Attendant that I was going to hospital in Sydney, he went and got me a whole pile of raspberry cream biscuits and said they would be better than hospital food! That was so generous and thoughtful of him.
We arrived in a hot and streamy Sydney and I still had those butterflies fluttering around in my little stomach and then we went to admissions we were told that there was no bed available until 4pm and we had been told by our doctor we had to be there by lunchtime. So we left our bags at admissions and went for lunch, I enjoyed some strawberry and cream pancakes with Mum and I had a Coke Spider, they put heaps and I mean heaps of icecream in a large glass and gave me the can of Coke, I poured a little in and immediately it bubbled and rose to the top of the glass.
Mum and I decided that because we had a couple of hours still to waste we would take a walk down to Coogee Beach, we were half way there when we received a call from the Hospital to say the bed was now ready. So Mum had to walk back up the hill as quickly as she could and the hill down to Coogee is rather steep.
I was admitted and given a bed, I was expecting to see a Paediatric Cardiologist which is what we were told but suddenly I was surrounded by all these other specialists, I had blood taken, blood pressure done and weighed and measured, I had still retained the weight that I had put on when I was measured in Canberra on Monday so I was happy with that.
Mum asked when the heart monitoring would begin and we were told that we would be seeing a Nutritional Team instead. Mum was not impressed, all of this could have been done in Canberra under my wonderful paediatrician and if he had of thought it necessary he would have sent me to Sydney, we had gone to Sydney and really had not needed to, I think they just like to control everything and don't think our doctors in Canberra are capable.
Anyway while Mum was taken away to talk to a doctor, I was whisked away and a nasal gastric (NG) tube was inserted into my nose and down my throat, I had one after my surgery and it is the most uncomfortable feeling and it is difficult to swallow with it in.
My weight has been slow to pick up since my ordeal and during Chemotherapy it plummeted and the doctor saw no real urgency about it. I had just been eating really well, putting on weight and feeling much better within myself so I could not believe they were doing this to me, I asked for Mum but they told me she could not be with me, I was so terrified I lost my voice, almost like mutism and could not speak but I wanted to tell them no! not without Mum, Mum help me! I cried and when Mum returned from talking to the doctor she was taken by surprise, she had not given permission for this to be done to me.
An EGC was done of my heart and everything was fine, bloods were done my potassium and phosphate were a little low so I was put on a supplement as well as some calctrate for my bones, this again could have easily been done in Canberra. Through the NG tube I would be given Ensure at night it puts weight on rapidly but the only problem is that if it is done too suddenly then other problems can occur.
I had a dreadful night sleep, I felt uncomfotable, frightened and just wanted to go home, Mum slept in a chair beside the bed and said it was terrible but at least she was there beside me as usual.
This morning things went from bad to worse, they gave me less food to eat than what I do at home, I can't understand what is going on and they are trying to say I am like an annorexic person, but I am not, I eat, in fact I have been eating well, I certainly don't make myself sick after eating or go out and do crazy exercising either. Mum is not allowed to stay with me and they are sending her to a Lodge it is like they are blaming her but my Mum always looks after me.
Worse still is that because of where I am, Mum can only visit at certain times from tomorrow, from 9.30am to 8.30pm tomorrow but on Monday I will only be able to see her from 4.30pm to 8.30pm, I am so frightened, I don't want to be alone, I am scared that they will do something to me again without Mum's permission, this does not seem right. I know that my weight is a little low but Jarrett is on the bottom three percentile and he does not have to have this done, my Nana, Uncle and other members of our family are only small, they have fast metabolisms that burn fat quickly, I am probably like that it would most likely be hereditary like low blood pressure.
My heart rate is perfect., my blood pressure and all my blood tests are good, I am in no danger of having a cardiac arrest now and probably never was and my seizures are exactly what my paediatrician said they were from the Brain Surgery, so I should now be able to be released home. My friend Emily was going to come visit me today to cheer me up and so was Tess but we were told to ring them and cancel it as they did not want me to have visitors. I am not sick, I can not understand this, I have been crying lots and then they are trying to say it is about my weight but it is nothing like that it is because I want to be home, they won't listen to me, it is awful.
At least I have Theodore with me, he has been through everything and I know that through having him there again I will find the strength to get through this and get back home to Canberra as quickly as I can with my paediatricians help. Thank you for all your truly wonderful and supportive comments as well as touching stories to help me through.