Sailing the Seas

I have not blogged in quite some time, therefore as to not overload you with letters upon letters, words upon words, and paragraphs upon paragraphs, I'm going to write snippets of the events I would like to share with you until you're all up-to-date.

Going back to around Friday 15th May 2015 my mum invited me along to an event with Mindfulness Belfast held in the Crescent Art Centre, Belfast. It was a Zen and Poetry Workshop which was held by Paul Haller, a Belfast man who left in the early 1970s, and after some travelling in the East he engaged with and developed a Buddhist practice. I had never been to anything like this before, so it was a whole new experience. I was intrigued to find out more about it, as I like learning about different cultures. When I was eight years old my family and I travelled to Thailand to visit my Grandad who moved from England to live there. I remember visiting the temples located up in the green hills of Chiang Mai. It was a beautiful, peaceful place, with gold detailing on the buildings and statues of Buddhas too. My mum and I joined the workshop in the afternoon when special guest Naomi Shihab Nye who is an American poet lead the poetry workshop. Naomi shared some of her poems with us, and told us stories from her life too. Ever since I was old enough to read I loved poems, I had a large bright orange book full of poems for children with cartoon illustrations. I would read the poems over and over again, and I use to trace the illustrations too as I loved art.

I have finally finished my first year of college! I submitted my last assignment for my course last Friday, which is a BTEC Level 3 in Business Management. I was allowed extra time to complete all my assignments, but now I can finally say I've finished year one out of the two year course (hence why I've not blogged in a very longtime).

This summer is the first summer since 2011 that I will not be spending it in hospital! It feels so good that I will be finally having a hospital free summer (yay). Next week I will be sailing for the first time ever across the seven seas (well, not exactly the seven seas, but to Scotland, which I'm extremely excited about). I have treated myself to some new clothes (obviously they were necessary for the sailing trip). I bought myself some nautical themed pyjamas (very essential when going sailing of course); a nautical themed backpack (also very essential when going on a sailing trip), and a few other bits and pieces.


Danielle X

The Travelling Cake

It was an early Wednesday morning when my mum and I caught our flight to Bristol. I love being up at this time of the morning to see the sunrise with the beautiful colours in the sky (although this is a very rare occasion).

You've guessed it, I'm blogging about another trip to Bristol, where I found out how Annie and Heidi have be doing, as well as an appointment with the pain specialist.

I know for some of you who "like" or "Follow" my Facebook or Twitter Pages may already know, but I'll share with you once again the amazing news that my brain tumour has shrunk by a further 1mm. I am so pleased with my Annie (well done to you Annie for letting the IMRT radiotherapy do its job), however Heidi is still giving me problems. Without sounding too medical one of my ventricles is large, but the pressure measurement was fine in June, so I'm not sure why I still feel so exhausted and in a lot of pain. I wish to get the six weeks back when I felt amazingly well, this was immediately after my IMRT radiotherapy which finished in January 2014. I was able to enjoy taking Harry the pug for walks in the cool crisp air, and I was able to exercise too. I felt as if my head was connected properly, and not suffering from a huge amount of pain. Sadly this only lasted a short period of time, and I am determined to exhaust every avenue to get that time back again. My oncologist who is so caring and understanding, felt that my case should be discussed at the next multi disciplinary meeting (MDM). I got a phone call this week to inform me that another trip to Bristol will be needed to have four days of pressure monitoring (in June it was over one day), this will mean more surgery, and a referral to a new neurologist to look at pain management. I have not said too much, but I am unable to attend college every day and with every week I am going in less and less. It's frustrating and I've felt angry at not being able to be spontaneous and go out when I want, or even carry out everyday tasks without feeling completely exhausted and in pain. For now I am trying to keep up with my college work, while waiting for a date to travel to Bristol once again.

Going to Bristol means many hospital appointments and on occasions surgery, but also the opportunity to explore and meet with friends I've made. My mum always makes sure that I remember my trips with smells of freshly cooked cakes and pastries, and not of clinical smells that hospitals have. I visited my favourite tea shop in Bristol called, The Tea Birds. I enjoy the delicious dainty sandwiches and of course their loose leaved earl grey tea. My mum also found a quaint french patisserie. Mum is great at spotting good tea and coffee shops from the car on our travels to and from hospital, and this one was a real treasure. Not far from Southmead Hospital tucked amongst a row of various shops, we managed to park right outside L'Artisan (that's why I always go to tea shops as mum can usually park outside without the need to walk too far). L'Artisan is a patisserie run by a lovely french lady and her husband, together with their french waitresses. I spied my favourite through the glass window in the display cabinet, macaroons. Of course mum got chatting to the owners, and we found out that all the cakes and pastries are made by the husband who is a trained pastry chef. This french patisserie is a little piece of France located near the heart Bristol.

Appointments over another road trip was ahead of us, and so we began the long journey from the west of England to the east of England. This was a special trip, a charity event for my Fund (The Brain Tumour Charity - Danielle McGriskin Fund) which was organised by one of my mum's old boarding school friends. The fundraiser was attended by my mum's old school friends, who she had not seen for nearly 30 years. It was nice to finally meet them from stories my mum has told me about her boarding school days.

Halfway through our five hour trip to Norfolk, we realised that we had left most of our clothes at the CLIC Sargent Home from Home in Bristol. The dilemma was quickly resolved, as I decided to buy new clothes for the event. Mum ran into my favourite shop called, Topshop for me as I was feeling very tired and sore, and made a quick purchase of new clothes (in fact she bought the same dress as I was going to wear but had left behind in CLIC House).

My mum's friend Lesley organised a great night with music, delicious food and lots of raffle prizes too. I spied a lovely enormous cake which was decorated with my Fund's logo. Lesley insisted I took it home with me, I think I might have told her that this cake was the first cake to have my Fund's logo on it. I was delighted and determined to get it back to Northern Ireland in one piece. Mum had her doubts as she reminded me that you are only allowed one hand luggage on the plane, so the challenge was how do we smuggle the cake on board. It nearly didn't happen, my lovely decorated cake with a swirly cream topping and intricate details weighed a tone. We managed to get to the airport in the most horrendous downpour, the cake sat in its purpose built box, but there was a dash from the car park to the airport entrance and the rain was not going to stop. We never travel light, so between hand luggage and suitcases mum and I dashed across the airport car park. The box holding the cake got wet and the handle torn, but we carried on. Through the security x-ray machine the cake went and out the other end in one piece, no questions were asked. The cake had moved to the side of the box and so the icing was flattened, but it was still OK. Now for the long walk to gate 88 to catch the flight home. Mum was in charge of the cake and just as we thought it was safe, a man turned quickly and knocked the cake box out of mum's hand. The cake rolled out of the torn box in front of hurried passengers going by. Mum frantically rescued the cake, and although it was a little battered it was still edible. My mum carried the cake and found a member of airport staff who got another box. With the cake safely in a new box, we somehow managed to get both our hand luggage and the cake onto the plane with no questions asked. I have to say, it may not have looked so amazing and a little more battered and bruised by the time we got home, but with a dust down it tasted delicious.

Danielle X

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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