Biopsy Results

I was feeling well enough to be discharged from hospital the day before Father's Day, which I was very pleased about as I didn't want to spend Father's Day in hospital. I was supposed to be discharged a day ealrier, but I ended up having to stay another night as I walked around the hospital ward, was pushed in a wheel chair to Prof Gill's office (to look at the pictures of my brain taken during my surgery) and helped pack a few of my things which made my head pain and other symptoms increase dramatically. I think the excitement of getting out of hospital was a bit too much (oops a daisy). My Mum, Dad, sister and I are staying at the CLIC Sargent Home from Home whilst I get over my operation and while we were waiting for my biopsy results. My head has been extremely sore from surgery, probably because they had to screw a heavy metal frame into my head in four places, making my head very sore and swollen. Luckily, over the past couple of days my head pain and vision problems are getting back to their good old normal selfs (by normal I mean my everyday head pain and vision problems). I had been sleeping lots and lots, due to being under anaesthetic for 5 hours. I would go to bed at 8pm, wake up the next day at 7:30am, have breakfast, go back to bed until 12pm, have another snooze later in the afternoon, have dinner around 6pm then go back to bed at 8pm again. I am still feeling a bit sleepy but I'm not sleeping during the day anymore, but making sure I have an early night so I have enough energy for the next day. I always wake up every day with the intention to do something even if its small, some days I can do something for a couple of hours and some days I can't, but I have learnt to take one day at a time and enjoy the things I can do even if it's something simple.

My family and I went to Jamie Oliver's Italian Restaurant in Bristol on Tuesday 18th June 2013. The food was absolutely delicious, especially the ice-cream. I was very excited to go to his restaurant and I would definitely recommend it if you are in or around Bristol. After my family and I went to Jamie's Italian Restaurant, we took a family trip to the Bristol Aquarium. It was on my list of ''Things to do While I'm in Bristol'', so we definitely had to go there. At the aquarium we saw sharks, Nemo and Dori from Finding Nemo (not really but it looked like them), Piranhas, a huge long green thing which looked a bit scary and lots of other weird and wonderful fish and sea creatures.  It was lovely to go out and keep my mind occupied as my family and I were waiting for a phone call from my consultant Mr Pople from Frenchay Hospital about my biopsy results.

At Jamie Oliver's Italian Restaurant

My sister Rebecca and I at Bristol Aquarium.

Early on Wednesday 19th June 2013, Mr Pople phoned my Mum to discuss my biopsy results. My family and I were in the same room together at the CLIC Sargent House, I felt very anxious and just wanted to know the results straight away. My Mum got permission from Mr Pople to put her phone on loud speaker so that we could all hear. Mr Pople told us that my brain tumour is called an Astrocytoma and that it's Grade 2. Mr Pople wants me to start steroids immediately and he wants to discuss my case at a number of MDT meetings to decide the exact treatment plan. He said that I would need treatment as it is possible that my tumour could become more aggressive and turn into a Grade 3 or 4. I was relieved and pleased that finally after two years with 5 operations and lots of meetings with different consultants that Mr Pople wanted to help me and was sure that my tumour was causing my problems and not my hydrocephalus.  I'm sure that I didn't need all my shunt revisions and operations, but finally I am pleased to think that I am going to be able to fight my tumour and get better and be able to do and see all the things I want to do and see in life. Later that day, Mr Pople phoned again to speak to my Mum to say that he had discussed my results at an MDT meeting and that they felt that I should have 6 months of radiotherapy, its a type of radiotherapy called Intensity Modulated Radiotherapy. He was not sure if I could have it in Belfast or in Bristol. I hope it can be done back home in Belfast, as much as I like Bristol and the hospital care, its a long time to be away from my friends and school, if it does have to be carried out in Bristol at least I can stay at the CLIC Sargent Home From Home with my family which is really relaxed and friendly and I can see more of Bristol and do my A-Levels here.  I will have to wait and see because Mr Pople wants to speak about my case at some other MDT meetings to make sure that this type of treatment is the best one. It was a lot to take in but I'm sure whatever decision is made I believe I will get me better and fight this.

I had been looking very black and blue on my arms and feet, from where I was poked and prodded with needles during my biopsy operation. I noticed today that this is calming down. I have two dots on my forehead form where I had the metal head frame used to keep my head in place during my biopsy. My sister said that I am growing devil horns and my Mum said that a vampire with a very wide jaw bit me in the wrong place! Thankfully the two dots are starting to go, also a bit of make-up does the job too.

Thank you very much to everyone who has sent me very kind Facebook and Twitter comments/messages, they really cheer me up. Thank you also to those who have been spreading the word about my blog. I will posting a post after this one which will tell you the best way to spread the word (hopefully it will work!).

Danielle :)