Wednesday, 19 February 2014

Where Do I Go From Here

I had a lot of time to think when I was in Bristol, about what I want to do now that I'm not at school until September. I don't want to sit around all day thinking about what I could be doing, I want to put my thoughts and ideas into action. I like to try and plan what I'm going to do each day and week, so that time doesn't run away and I soon realise that I've not completed anything while I'm off. I've always enjoyed cooking and took Home Economics as one of my GCSE subjects last year. I've been cooking some meals and treats for my family and I to enjoy, such as; Leak and Potato Soup, Fish Pie, Italian Macaroni, Extra Spicy Bolognese and Lemon Drizzle Cake with Poppy Seeds.

I've always enjoyed working with young children. When I was in Primary School, one of my really good friends Orlagh and I use to help out at break and lunch times, to look after the Primary 2's when we were in Primary 7. We were recognised for this and each presented with a certificate at our year's end of school ceremony. I told my CLIC Sargent Social Worker about this and he has arranged for me to volunteer at the new CLIC Sargent Home From Home in Northern Ireland. I'll be volunteering by doing arts and crafts with children who will be at the house when required. I'm really looking forward to it, as I know when I stayed at a CLIC Sargent house in Bristol, the days can sometimes drag in and become a bit boring. It may not seem a lot, but it's enough for me at this time.

Of course I'm continuing with my fundraising and awareness raising of brain tumours, with my Fund with The Brain Tumour Charity called, The Danielle McGriskin Fund. There are amazing fundraising events coming up, so head over to my Facebook and/or Twitter page to find out more (and please give it a "like" or "follow"). While I'm off I want to do some activities for me and take some "me time". One of the things I've done is to start reading books again (not that I haven't read a book in a long time, but to start a book that I enjoy reading and finish it and also not having to read a book for school exams). I heard through Facebook about a book called, "The Fault in Our Stars". I read it in six days, which for me is very quick as I can be a bit of a slow reader. Some say that it takes the first chapter of a book before you get into it, but with this book I loved it after reading the first page. The Fault in Our Stars is a sad story, but it will also make you smile.

As I am a The Diana Award Holder (I was awarded with the Courageous Citizen award in March 2013), I've been selected out of 1000s of other The Diana Award holders to join 120 of them at the National WE Day. It's the first time this event is coming to the UK and will be held in London this March. The conference is bringing young people together who have made a difference in their communities. The event will be attended by renowned guests who will take part in WE Day; including Sir Richard Branson, former U.S Vice President Al Gore, Ellie Goulding, actor Clive Owen, Malala Yousafzai (whose book I am currently reading), and other high profile inspirational people. I am honoured and excited beyond words to be attending this event, it will be one I will never forget. This summer I've been invited to go on a sailing trip with The Ellen MacArthur Cancer Trust through CLIC Sargent in Northern Ireland; I'm really looking forward to this as I've never been sailing before, so it will be a new and exciting experience (I just hope that my operation to have my shunt taken out doesn't happen around the same time as the sailing trip, and that I am well enough, fingers and toes crossed).

I had my hair cut for the first time since radiotherapy a few weeks ago. I know a hair cut is something that many people have done regularly, but for me it was nice to get my hair done as I've got quite a few bald patches, thinning spots and short spiky bits from radiotherapy and numerous brain surgeries. I've become use to neurosurgeons saying, "now we are going to have to shave some of your hair off", before the operation takes place. I remember the very first operation I had which was for my hydrocephalus in July 2011. I was really worried about how much hair was going to be shaved, but in the end my surgeon was a good hairdresser and shaved it very carefully so it was easy to cover up. Now because of scars and hair loss, I'm finding it harder to cover up the bald patches and thinning spots.

It's been a roller coaster of a journey, like sporadic heart beats with feelings of highs and lows throughout. It definitely hasn't been easy. Living with my initial symptoms before I was diagnosed was frustrating that the Doctors wouldn't listen to me after months and months of going back and forth to see doctors and telling them about my symptoms, for it to be put down to stress, migraine and just being a teenager. I even saw a neurologist privately who said I was just stressed and it's just a migraine. Eventually, my Dad took me to his optician, who diagnosed me with having papilledema (swelling of the optic discs) and referred me to a neuro-opthalmologist. That's when the second stage of my journey began. I remember when I was first diagnosed not knowing how to spell words such as tumour, I thought it was spelt like, "chew-more" or "tomore" (I guess if you pronounce it the way I thought it was spelt it sounds right). As it took a year until I was diagnosed and I ended up with chronic hydrocephalus (water on the brain), which in itself has left me with some medical problems, I am determined now to raise awareness of the symptoms of brain tumours in children and young people. A way in which I can do this is through The Brain Tumour Charity's awareness campaign called, HeadSmart: Be Brain Tumour Aware. I've had a few primary and secondary schools who've become involved with this campaign by distributing symptom cards, including my primary and secondary school, but I am looking at other ways of getting the cards distributed throughout schools in Northern Ireland.

Thankfully that horrible metal funny kind of taste I had in my mouth which I think was from radiotherapy has now disappeared. I started another lot of steroids a couple of weeks ago as my symptoms have returned. I'm now on a reduced dose of steroids, but over the last week since they have been reduced my symptoms have become worse again and this is a real setback and I don't know why at the moment. Maybe I need to carry on with steroids for another while or maybe it will get better soon. I will contact my oncologist in Bristol if it doesn't improve.

My list I'm making about the things that can be done with a radiotherapy mask is progressing very well. I've called it, "101 Things To Do With A Radiotherapy Mask". I've got around 50 ideas thanks to supporters on my charity Facebook and Twitter pages. I'll try and get to 101 and then post the list on my blog for you to have a read of all the wonderful, creative, silly and brilliant ideas.

Danielle X

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