Friday, 22 November 2013


A huge thank you to a truly wonderful charity called, Alice's Escapes, for arranging a short break away to Dublin for my family and I last weekend. Alice's Escapes have given my family and I special time to be together, before my Mum and I head to Bristol tomorrow (Saturday 23rd November 2013) so that I can receive treatment for Annie (my brain tumour). We had a wonderful time being pampered at the hotel spa, enjoying being in Dublin, meeting up with family friends and being together as a family forgetting about hospital appointments. The hotel that we stayed in was lovely, many famous people have also stayed their too, such as Queen Victoria. We read that Queen Victoria had a sixteen course breakfast while staying at the hotel (I could never imagine eating a sixteen course breakfast, they must of been very small courses). There was also a restaurant which was named after Laurel and Hardy.

My Mum and I have been busy packing and getting ready most of today, ready to leave early tomorrow morning to take the ferry to Bristol. On our way to Bristol we will be making a stop to visit friends of ours, it will be lovely to see them again as we haven't seen them in a while. On Sunday we shall be setting off again and making our way down to Bristol. On Monday I have an appointment with my oncologist again and then on Tuesday will be my first day of IMRT radiotherapy which will last six weeks. After my first session of IMRT radiotherapy, my Mum and I will drive to Farnborough to visit The Brain Tumour Charity. They are the charity that I support very much and any money I raise for brain tumour research goes to them; you can read more about my fundraising and awareness raising of brain tumours with The Brain Tumour Charity by viewing the links down the right hand side of my blog.

I will keep you posted throughout my time in Bristol through my blog, as well as  my Facebook and Twitter pages.

Packed and ready to head to Bristol.

Danielle X

Monday, 18 November 2013

Heidi And I

My family and I arrived in Bristol on Thursday 31st October 2013. The flight over was unpleasant for me as it caused me to have horrible pressure in my head and eyes, so I tried to sleep on the plane which was very hard to do. My family and I stayed at the CLIC Sargent house in Bristol, where we stayed when I had the biopsy of Annie (my brain tumour) in June 2013. It was lovely to see the staff who work at the CLIC Sargent house again, as they're all so kind and friendly.

The next day (Friday 1st November 2013) I met with my oncologist at Bristol Children's Hospital, where my family and I were told the risks and benefits of me having IMRT radiotherapy and other information about the treatment. After this meeting I then had my mask made for IMRT radiotherapy (which can double up as my halloween mask next year), which took place in the hospital. I was quite nervous about having the mask made, but it really wasn't as bad as what I thought it was going to be. The man who made the mask explained everything that would happen, this made me even more nervous as I just wanted to get it over and done with. When I was having the mask made I couldn't talk at all and I had to keep my eyes closed the whole time as the mask covered my whole face. To make the mask they took a large piece of plastic material and placed it in a hot water bath to soften it, they then placed it over my face and made sure by using their finger tips that it fitted neatly around my nose and eyes. They then waited for it to completely harden and once it hardened it was lifted off my face, and then it's finished. Making the mask took around 15 minutes, so it wasn't too long and wasn't too unpleasant.

After my mask was made I then had an MRI and a CT scan of my brain for the planning of my treatment. During the CT scan I wore my mask for IMRT radiotherapy. The mask felt tight and uncomfortable, but I knew I wasn't going to be wearing it forever. During the meeting with my oncologist, I told her that I thought I might have hydrocephalus again (AKA Heidi). After I had my scans my Mum and I were told that I did have hydrocephalus again.

That evening I was admitted to Frenchay Hospital, Bristol, this is where the paediatric neurosurgery team is based. My Dad and sister went back home to N. Ireland the next day. On Saturday 2nd November I had a special kind of MRI scan at Frenchay Hospital, where the radiographers could see where the CFS (brain fluid) was flowing in my brain. During the MRI scan I got to listen to Olly Murs and Amy Winehouse. Listening to music is the only good part of having an MRI scan, as the machine is very noisy and you have to wear ear muffs and sometimes ear plugs too to protect your ears. After I had the MRI scan it was then decided that I would need an ETV operation. The ETV operation was the very first operation that I had for my hydrocephalus caused by my tumour in June 2011.  Unfortunately, the first time the ETV was done it did not work. Just a little biology lesson - ETV stands for Endoscopic Third Ventriculostomy, it is an alternative to a shunt placement for the treatment of hydrocephalus. The technique opens a hole deep inside the brain to re-establish effective flow of cerebrospinal fluid (CSF). It is used especially if a tumour is blocking the aqueduct, as is the case of Annie. The neurosurgeon on call in Bristol who operated on me didn't take my shunt out when he carried out the ETV incase the ETV doesn't work, but he did tie my shunt off with 'silk string', so that the shunt doesn't work anymore and the ETV is now doing all the work (it is also a very expensive shunt). An ETV is a more natural way for the CSF (brain fluid) to flow so it can take longer for things to settle down. I will be so pleased if the ETV works, as I don't like having a shunt as it sometimes makes funny noises and I can feel it through my skin on my head and near my neck, I've also had to have many of operations because my shunts has got blocked which is very common and other problems too.

On Monday 4th November I was discharged from hospital, and I could rest back at the CLIC Sargent house. My Mum and I stayed in Bristol, as you're suppose to wait two/three weeks before flying on an airplane after an ETV operation, this is because they put a little bit of air in my brain during the operation; I guess you could say that I was an air head. Although one of the Nurses in charge arranged for me to have a CT scan earlier on Sunday 10th November in the hope that the air had gone by then, which thankfully it had. Once we found out the fantastic results from my CT scan, my Mum and I quickly dashed around packing our belongings, as we could catch a flight that evening home to N. Ireland.

A nice thing happened when my Mum and I were both boarding the plane. The lovely air hostess said hello to me and explained that she follows my journey on Facebook and how she was wondering if I was going to be on her flight home to N. Ireland, as she had read my recent Facebook posts. It was very strange to be spotted I guess you could say, but also really nice as it shows people really do read my posts on Facebook and are becoming aware of brain tumours, as well as hydrocephalus.

Step: 1
of having my mask made for IMRT

Step: 2
of having my mask made for IMRT

Step: 3
finished mask for IMRT

Danielle X