I know, I have been a terrible blogger. I've not blogged in around five months, and I didn't even finish telling you about my sailing adventure with The Ellen MacArthur Cancer Trust over the summer. But I'm back now, to give a quick update on how I am health wise, about my college life, and life in general.
If you follow me on my Facebook and Twitter pages, then you'll know the fantastic news that I received in late October. After flying to Bristol for my yearly MRI scan of my brain, I met with my wonderful oncologist the next day, who told me that my tumour is stable. Honestly, when I first received the news I was a bit worried. I was thinking about how my tumour had shrunk by 2mm, then 1mm, and now it is stable which means it's neither shrunk nor grown. I was worried because I was thinking what if it doesn't shrink anymore, or what if it begins to grow, as the radiotherapy I had for six weeks over 2013/2014 has done everything that it can do. After having time to think, I feel much more confident as I'm looking on the positive side, than when I first received my results.
My health in general has been much better in comparison to how I was this time last year. Like I always say, I need to plan my days and weeks, and balance my college life with my social life. If I don't, then it's a downward spiral. Action Cancer has been extremely kind to me. I began having acupuncture with the charity around this time last year. They have allowed me to continue receiving the alternative treatment with them, as I find it really helps me to manage my chronic fatigue. Thank you to another wonderful charity for their great support.
I thoroughly enjoy college. I love everything about it from the course, to seeing my friends. I'm doing a BTEC Level 3 Extended Diploma in Business, which is equivalent to three and a half A-Levels. The work isn't easy, but because it's all coursework and not exams which involves using your memory, my wee brain is able to manage brilliantly (GO BRAIN!). I'm into my second and final year of the course. My overall result for my first year was Distinction* Distinction* (D*D*). I have applied to and hope to go to University next year to do one of the following, Business Management, Business Studies, Marketing, Human Resource Management, or Human Resource Management and Marketing. I want to stay in Northern Ireland, but move out of my family home. Due to my health, it means I know if I'm having a bad period I can always go home and rest up well, but still have the independence of living away at the same time.
I have reached another big milestone in my life, as many other people have too. I passed my driving test last Saturday with one out of a total of fifteen minors! This was another big achievement in my life, after having to wait a year before I could receive my provisional license as I had radiotherapy, while hoping at the same time that I would be allowed to drive, I am now officially on the roads.
I am one of eleven Young Ambassadors for The Brain Tumour Charity. Sadly one of our fellow Young Ambassador and friend, passed away last week from her brain tumour. She fought her hardest, with strength and courage. I only got to meet her once at our first Young Ambassador meet up, but she will be remembered for being kind, funny, and inspiring to all. I have lost two other friends who both passed away from cancer this year. I met Ellie and Jessica at CLIC Sargent's Home from Home in Bristol while I received radiotherapy. We were staying there at the same time, and due to our circumstances I grew close to both of them. Ellie's family and mine even shared Christmas together at the Home from Home.
Over this Christmas period I will be thinking of families and friends who have lost their loved ones.
I've had a busy few weeks over the Easter period, with special events and opportunities which I've enjoyed with enormous appreciation. I have been feeling really well, although I'm exhausted now as I've pushed myself.
On Sunday 15th March 2015 I was invited as a special guest to the Belfast Giants' game to drop the ceremonial puck. It was an amazing experience walking onto the ice (and I didn't slip), hearing my name being announced to all the supporters as well as hearing my Fund's hashtag #TeamDanielle, dropping the puck and meeting some of the Giants again. It is a day I will remember forever.
On Tuesday 17th March 2015 my mum, dad and I went to Down Royal Race Course to watch racehorse Danielle's Journey who is named after my blog and which my Fund has 5% share in compete in her third race. It was my first time going to the races and what a great experience it was. Danielle's Journey placed first and I'm so pleased to have been there as the last two times she's raced I've been in Bristol. It was so nice to me some lovely new people who were also supporting Danielle's Journey. I look forward to seeing her race again.
I was awarded a Points of Light award by the Prime Minister David Cameron on March 6th 2015. It was an honour to receive this award and to be nominated by a member of the community, who heard me speak at my old grammar school, Hunterhouse College's award giving. When I began fundraising and awareness raising of brain tumours with The Brain Tumour Charity, it never crossed my mind or was my goal to receive awards for the work I have done, but I have won three awards which I'm truly grateful for.
The Prime Minister sent me a tweet announcing that I had won the award, and on Friday 20th March 2015 I was officially presented with my award by the Lord Mayor of Belfast Nichola Mallon, which was very special as I have been following the great work she has been involved in while she has been in office. I was invited along with my family, friends and representatives from some of the businesses who have supported The Brain Tumour Charity - Danielle McGriskin Fund. I also got to meet the lovely lady who nominated me and for whom herself has also won a Points of Light award. I've never been inside the City Hall before. Like most official buildings, it looks smaller on the outside than it does on the inside, a bit like the wardrobe from the movie Narnia. It'a grand building with beautiful elegsnt artitectural details and a grand staircase. We were all invited for tea and canapés in the Lord Mayors parlour. After I was presented with my award, my guests and I went outside to watch the City Hall being lit up in teal and red, The Brain Tumour Charity's colours to mark Brain Tumour Awareness Month. It was the first time Belfast City Hall had been lit up to mark Brain Tumour Awareness. The evening was very special and it was great to be surrounded by all those who have chosen to support my fundraising.
This Easter holiday was the first time since being diagnosed with a brain tumour and hydrocephalus in July 2011 that my family and I went on a holiday abroad together. I had never been well enough to go abroad until now. My sister, Rebecca and I have never been to Germany and we've always wanted to go, so Germany it was. We went to a place in Germany called, Munich. It's a beautiful city with historic buildings and everyone is so friendly. It was so cold in Munich, the locals kept saying that at this time of the year the sun is always shining and it's warm, but there was a lot of rain, snow, wind, thunder and lightening and only one day of sun while we there. During our stay we visited a concentration camp in Dachau. It was sad to be in a place where many people died so horrifically and were treated so badly. I found it partially hard to walk around the building where the gas chamber and crematorium was, to imagine the thousands of people living in such a hard regime and unable to escape. We also visited the BMW Museum, my dad and I love cars. My dad used to drive me to school and we would point out different cars on our journey. I loved every moment of it. It was so fascinating to see some of the really old BMW models and the latest ones too. My mum and sister managed to stay for a short while and then escaped to the coffee shop, it wasn't there thing. I wasn't keen on German food, so thankfully the hotel served a continental breakfast and had a steak restaurant too. Although it was my goal to go to a traditional German bar and have a local beer and bratwurst, which I did.
I decided to treat my pug Harry to a new lead and collar. I know pugs shouldn't wear collars as they have breathing problems, but this is just for around the house so he has his dog tag on. We use his harness for when we take him out and about and he was in need of a new lead too. I also got him a cute bandana which matches his collar and lead. The bandana is really good as it slips onto his collar, so it's not tied around his neck. I think he looks very cute!
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.
I was invited on two occasions as Guest of Honour by my Principle from my old grammar school, Hunterhouse College, to give a motivational speech to the girls on their Junior and Senior Prize Giving, along with their parents/guardian, teachers and the Board of Governors. My speech was about my journey, fundraising and not giving up on your goals.
My Mum recorded my speech from the Junior Prize Giving and I thought it would be nice to share with you on my blog.
Danielle X
"I would like to thank Mr. Gibson, for inviting me to your Junior Prize Giving this afternoon. It was a great surprise and honour to be asked to speak at this special event. I have given speeches on different occasions before, but I have to say that I feel very privileged to be given this opportunity to share my experience of school life with you all today, so here it goes.
Good afternoon Mr. Gibson, board of governors, teachers, students, parents and guardians, my name is Danielle McGriskin, and I was a pupil at Hunterhouse College, only one year ago, so I remember it very well.
It wasn't a straight forward transfer from Primary School to Hunter House College the school of my choice. I didn't receive the 11+ grade to be accepted, and as you can imagine this was a huge disappointment. So I began secondary school believing that if I worked hard and revised really well for the entrance exam, I could re-apply to Hunterhouse for year 9. For me Hunterhouse wasn't just about the great academic achievements, it wasn't the school that any of my primary school friends had chosen, but I knew when I visited the school on open day that it was about the opportunities, support and the friends that I would make. I wasn't a follower and decided to go with my own gut feeling, so I was delighted when I got accepted and began Hunterhouse College in year nine.
I remember my first day like it was yesterday, the sweeping driveway with its towering trees on either side, and the welcoming school sign above the entrance door. I was extremely nervous especially as I didn't know anybody, yet I was so excited to be given this opportunity to learn in a welcoming and homely environment. As my first few days went on, I made a few friends, began to know my teachers and tried not to get lost.
After a great year in year 9, I began to feel unwell at the end of the summer holidays, my health continued to get worse throughout year 10. I had many symptoms such as, headache, dizziness, blurred vision, pain around my eyes, visual disturbances and tiredness. I tried not to let my symptoms get in the way of my school and social life, and I tried to hide them, but they gradually got worse and I found it harder to carry on. Despite visiting my GP on numerous occasions as well as a Neurologist, a doctor who diagnoses and treats problems to do with the brain, they said that I was feeling this way because I’m a teenager, that it was just stress related, and probably migraines too.
As soon as stress was mentioned my mother like any other mum encouraged me to take up more exercise. When the announcement at school assembly for cross country came up, I decided to join. My symptoms kept getting worse but I still ran with a thumping headache, and Mrs McClenaghan was always so encouraging as I was usually the last one back to school. Despite this I really enjoyed running and I hope I can take it up again. In my Spanish classes I was frustrated at not being able to remember the different phrases and words, especially when tests and exams came up. Once in my English class we were put into groups, and we were each given lines to learn from a book that we were reading, I was given the shortest amount of lines as I joked with the girls that my memory was bad, not realising that it was. Sometimes I would have repeated myself, or held onto the banister as I walked down the stairs as my balance wasn't great. I still carried on going to school, trying to not let my symptoms beat me as I used up all my energy to smile and carry on. There were moments when I got into the car and collapsed with exhaustion as the pain was horrendous.
After a year of feeling unwell I finally had a diagnosis. It was on the last day of junior school, my dad bought me to the optician who diagnosed me with papilldema, swelling of the optic discs. I was then referred to a neuro-opthalmologist and had an MRI scan of my brain, I was diagnosed with a brain tumour on top of my brain stem and hydrocephalus, water on the brain. I call my brain tumour, Annie the astrocytoma, and hydrocephalus, Heidi hydrocephalus. I thought if they are going to be around for a while or forever, I might as well give them a better name which are much easier to pronounce.
I was frightened when I was told I would be having emergency brain surgery. I never liked scary movies or hospital programmes, but here I was without a choice going into surgery to correct the fluid on my brain. I won’t go into the details of the operation, but needless to say it was a shock to learn how to walk again. I was relieved to find out why I had been feeling so poorly, and I suppose my timing was good as the initial surgery took place during the summer holidays.
I’ve had many operations for my hydrocephalus, too many I’ve lost count, but I’m sure it’s over twenty by now. The majority of these operations took place while I was studying for my GCSE’s. I remember having emergency surgery one day, and sitting my maths exam a couple of days after I was discharged from hospital. If I wasn’t having surgery I was attending one of the nine specialists for appointments, scans and tests. Despite the surgery, I had to have more time off school because I wasn’t getting much better. In my final year of GCSE’s I would have gone into school for a few hours a week, and the teachers would send work home for me for the classes I missed. I felt that it was important to keep going, not only to attend some classes, but to meet up with friends and try and keep life as normal as possible. I needed to set myself a challenge and have something to focus on, otherwise I may as well have given up which was not an option. I was realistic and thought about how many GCSE’s I could manage, so I dropped a couple of subjects. I’m not saying I was pleased to be dropping subjects or it was an easy decision, but I had to be realistic. I thought if I could get my GCSE’s then it would be easier to move on to the next step of my education. I was delighted that I passed six of them. It was important for me to feel that I had achieved what everyone else was achieving, and that the last two years were not consumed by hospital appointments and operations.
Lower sixth came and once again I had just spent my summer holiday in hospital. In fact, the last four summer holidays have been spent in hospital, so I’ve given each of them a name during the summer period, Costa del Royal, Costa del Frenchay and Costa del Southmead.
I thought that surgery had finished and I was delighted to start my A-Levels, but unfortunately Annie my brain tumour had other ideas and became active. Sadly this meant I had to move to England for 6 weeks of radiotherapy over the Christmas period. I am pleased to say that Annie is behaving herself and has shrunk by 2mm. I wanted to carry on studying but I decided that after 20 operations and now radiotherapy, maybe I needed to have a break. It was the best decision I made as it allowed me to concentrate on my health, and decide on how I was going to carry on with my education. Despite the wonderful support the school has given me throughout my time here, I knew I would be better suited to attend college, as it allows me to study from home on the days that I can’t attend through online learning.
When I was first diagnosed with my brain tumour, I was devastated to find out how little cancer research funding is spent on brain tumours in the UK, currently less than 2%, yet it’s the biggest cancer killer of children and adults under 40. I wanted to help change this, so I set up a Supporter Group with a charity called, The Brain Tumour Charity. There have been many events held in aid of my Fund with The Charity, so I would like to take this opportunity to thank you all for supporting the fundraising that has taken place at Hunterhouse College.
After radiotherapy in Bristol and knowing I wasn't going back to school for the year, I needed a focus and used this opportunity as a somewhat gap year. This was when my fundraising and awareness raising of brain tumours was my complete focus. To date I’ve raised over £100,000.00 for research into brain tumours. I have learnt so much in the business sense about PR and the positive use of Facebook and Twitter, as well as running a charity. I have been interviewed on UTV Live and have had articles written about me in the Belfast Telegraph. I have been invited to speak at Stormont and have worked with the Public Health Authority on their cancer awareness campaign. I also write a blog called, Danielle’s Journey, which follows my journey from my biopsy in June 2013. I am now studying a BTech in Business at College, which I’m enjoying very much.
Looking back I can honestly say that I am not consumed by all the horrible surgeries and sickness. I look back and know that my diagnosis has helped me to become stronger, independent and optimistic. I have had some amazing opportunities and I have met some incredible people, some who are celebrities but most who have been going through similar journeys. Annie and Heidi are behaving themselves and I am trying to deal with any symptoms without them stopping me from achieving my goals.
I know I’m only 18 but I want to share with you lessons I have learnt throughout my journey.
Number 1) Just by sending someone a text asking how they are, or a smiley face on “Snap Chat” can really brighten their day, I know it did for me when I couldn’t see my friends as much as I would have liked.
Number 2) Throughout our lives we will all come up against challenges, however big or small it will be a testing time. Don’t give up and think there are no solutions or other options. Set yourself personal goals and take one day at a time to achieve them.
Number 3) Don’t hide behind what’s holding you back and look at opportunities to turn a difficult situation into a positive one.
Number 4) Get involved in school activities, charity work and whatever else as these are important life experiences for when you leave school.
Number 5) Remember that there are always other options to achieve your dreams and goals, we aren’t all the same, so be individual.
Finally, my motto which I share on my social media is, #StayStrongKeepPositiveAlways.
