Monday, 28 October 2013

It's A Date

After many months of waiting after I had the biopsy of Annie in Bristol in June 2013; I can now say that I have a confirmed treatment plan and date which will hopefully shrink my brain tumour (Annie). The confirmed plan is, that I will be having 6 weeks of IMRT radiotherapy in Bristol, I will receive this everyday apart from weekends as well as Christmas Day and Boxing Day. This means my family and I will be spending Christmas at the CLIC Sargent house in Bristol this year, which will be something different, but at least it's only one Christmas and I've got many more Christmas' to look forward too. Also, it will only be my Mum and I who will move to Bristol so that I can receive treatment. My Dad and sister will stay at home in N. Ireland and my Mum and I will fly home to see them and vice versa. Before I start IMRT radiotherapy, I will be meeting with my oncologist in Bristol this Friday (Friday 1st November 2013), on this day I will also be having scans taken of my brain as well having a mask made that I will wear when having my treatment. My family and I will then be flying home again that weekend. On the 25th November I've to go back to Bristol to have everything confirmed and then on the 26th November will be day 1 of IMRT radiotherapy. It's going to be a tough journey ahead, but with the support of my family and friends I'm sure I will be just fine. If IMRT radiotherapy doesn't work, there are two other treatment options that have been suggested, but I'm not going to jump ahead just yet and take each day a it comes.

Just like I did when I had the biopsy of Annie in Bristol, I will keep you up-to-date with my journey through my blog as well as my Facebook and Twitter pages, with short updates and photos.

As you can see, so far I've ticked off one thing off my list called, 'Things I would like to see/do before I go to Bristol for IMRT radiotherapy'. I've still got time to do the other things, some of which have been put in place, which I'm very excited about.

I started steroids several weeks ago, I'm now on a reduced dose which started this week. My cravings have been completely different this time compared to the first time when I was taking them. This time I've been craving scrambled eggs on toast everyday for breakfast (hmm hmm)! Where as last time, the first time I was on steroids, it was Fanta lemon, Sour Cream & Chive Pringles and the hospital's cafe paninis from RVH in Belfast, when I stayed there over the summer due to Heidi (hydrocephalus).

I've decided to take a year out of school this year, which is the last thing I wanted to do. Although, I think it's the best decision for me, as my symptoms have become worse, especially my eyes. I also don't want to push myself too much where I don't get the results in my A-Levels that I hoped for and may have to repeat the year again anyway. As I'm not in school I'm keeping myself busy by doing mini art projects suggested to me by my CLIC Sargent in Northern Ireland Social Worker, as well as my fundraising and awareness raising of brain tumours. The art projects have been great fun to do, although I've just about got one done so far. I've made (very nearly finished) making a cork board of memories from when I was in Bristol over the summer having the biopsy of Annie. I kept the wristbands that I had to wear when I was in hospital in Bristol, as I do for every hospital stay, so I've pinned those on the board too.

As Halloween is coming up, my sister and I carved a pumpkin each yesterday (Sunday 27th October). My Mum also brought a 'Munchkin Pumpkin' for my pug Harry, which my sister carved a face into as well. I must say it's very cute, as it sits outside beside my sister's and I's pumpkins.

My sister, Rebecca; pug, Harry and I with our
pumpkins ready for Halloween.

Danielle X

Wednesday, 16 October 2013

Belfast To Bristol

I met with my neurosurgeon at RVH, Belfast on Thursday 3rd October 2013 to discuss the different treatment options for Annie (my brain tumour) as suggested by the medics from Bristol and Belfast. The outcome of this appointment was that my neurosurgeon gave us another treatment option to think about. He was also brought my case to another MDM (Multi Disciplinary Meeting) in Belfast. At the MDM a decision was made that Belfast would let Bristol take over my care regarding my brain tumour, as there needs to be one main carer to take charge so we can move forward with my treatment plan and getting me better. We were told this on Tuesday 8th October 2013, we were also told that my treatment plan has been confirmed by the medics in Bristol. The decision is, I will be having six months of IMRT Radiotherapy at a hospital in Bristol. Although Belfast have an IMRT radiotherapy machine, they've never given this type of treatment on the brain before. I'm very pleased that Bristol are taking over my care for my tumour, as they've been very consistent, understanding and have made sure that any decision that has been made has been relayed back to my family and I. So that I can receive this treatment my Mum, Amanda and I will be living at a CLIC Sargent house in Bristol again, just like my family and I did when I was having a biopsy of my brain tumour in Bristol. It is a very long time to be away from family and friends, but my Mum and I are going to try and come home to see my Dad and sister, Rebecca as much as possible, and vice versa. As I don't have a confirmed date for when I will be going to Bristol (I should be going in the next coming weeks), Mum and I have been getting ready in preparation for the day. As I'll be away from school, I am going to try and continue with a couple of my A-Levels.  I am going to miss my friends and family but I'm sure we'll keep in contact by text, Facebook and everything else. I've started steroids again yesterday, and I'll be on these for a few weeks, so that means cravings for Fanta lemon! The steroids will help ease my symptoms whilst I wait for the treatment to begin.

My family and I went out for dinner together on Sunday 6th October 2013 to The Tannery, Moira. It was the second time that I had been out in three weeks, the first was my hospital appointment to see my neurosurgeon, which doesn't really count. It was really nice to go out but also very tiring. This week will be my fourth week off school. I'm in a lot of pain caused by my head and eyes as well as pressure headaches and vision problems, which is making me stay off school.  I'm lucky that my school is allowing me to do my A-Levels over three years.

I ordered a pair of false nails from Devine Nails. They're a business in N. Ireland who make personalised false nails for every occasion. I decided to have the brain cancer awareness ribbon on my nails, ready for March which is brain cancer awareness month (I know it's ages away, but I just couldn't wait to get them!). My Mum, Amanda got a pair too.

My Brain Cancer Awareness Ribbon nails from
Devine Nails.

As you may have seen I've added a list to my blog just like I did before I went to Bristol to have a biopsy of my tumour, of all of the things I would like to see/do before I go to Bristol to have IMRT Radiotherapy. So far I've ticked one thing off my list, which was to go to the cinema. My Mum, sister and I went to the cinema over the weekend and saw the movie Diana. We thought it was a fantastic film and the actors and actresses were superb.

Danielle X

Wednesday, 2 October 2013

September (wasn't sure what to call this post)

Tomorrow I'm meeting with my neurosurgeon from Belfast (my original neurosurgeon has left so I am now under the care of another neurosurgeon) to discuss the different treatment options suggested by the medics in Bristol. Belfast will also be having another MDM (Multi Disciplianry Meeting) to discuss treatment options. All I want to do is to get better, go to school, go out with my friends and family with out suffering from extreme head and eye pain. Over the last week and a bit I've not been able to attend school at all due to my  symptoms, which is very frustrating especially as I'm trying to do my first year of A-Levels this year. 

My younger sister, Rebecca (15 years old) was very unwell a few weeks ago. She woke up with dizziness, sickness and vision problems. My Mum took her into hospital where she was diagnosed with extreme vertigo. Rebecca was admitted into hospital where she stayed in the same ward and the same hospital room that I stay on when I've been in hospital in Belfast. Luckily Rebecca was discharged the same day and is feeling much better. 

My family and I went to see the Belfast Giants ice hockey game on Saturday 21st September 2013. It was the third time I've seen them play and I had a brilliant time (although I'm still not sure of the rules, so when the crowd cheered I cheered too and so on). 

Me at the Belfast Giants ice hockey game.

My local horse riding stables, Tullynewbank Stables kindly held a family walk called, The Danielle McGriskin Fund Family Walk, on Sunday 22nd September 2013. It was a lovely afternoon with hot dogs and refreshments. It was great to see many people from my local community come and support much needed brain tumour research. A fantastic £549.40 was raised!

One of my best friends Orlagh and I at
The Danielle McGriskin Fund Family Walk.

I received a lovely message from one of my supporters, through my charity Facebook page a few weeks ago, asking if she could run in the Belfast Deep River Rock Half Marathon for my Fund, The Danielle McGriskin Fund. I was so pleased and grateful for Jenny wanting to run in the half marathon for my Fund on Sunday 22nd September 2013. Jenny raised over £300 and is the first person to run for #TeamDanielle. 

My Mum, Amanda; Jenny and I at the
Belfast Deep River Rock Half Marathon.

One of my best friends Orlagh, held a very successful bun sale at her school, Aquianas Grammar School. All her school friends supported her by baking delicious buns, cakes and tray bakes and helping her sell them to the staff and pupils of Aquinas Grammar School. Orlagh raised an amazing £430.45!

Orlagh (middle) with friends at the bun sale Orlagh held.

Danielle :)