As you may have guessed my blogging days have come to an end for now. I may decide to put pen to paper, more like fingers to keyboard in the future, but for now I'm putting my blog on the shelf.
Danielle's Journey was originally created when my CLIC Sargent Social Worker, Simon suggested that I write a blog to document my experience of having a biopsy of my brain tumour in Bristol back in June 2013. I continued to write my blog throughout my radiotherapy days and even after my treatment was complete. I'm glad I did this as I have those memories good and bad written down forever, to keep not only for myself but to share with you.
Living with a constant headache, chronic fatigue and other debilitating symptoms since I was 13/14 years old does not only make me feel physically unwell, but mentally too. There is only so much one person can take before enough is enough. I've decided that I need to be selfish and focus on what is right for me. I always put a smile on my face as I don't want people to know what it's really like to be living with a brain tumour and hydrocephalus, as it is not a fairy tale story or a Hollywood movie. At times it is isolating when I can't go out because I'm in too much pain with my constant headache to the point of tears, or I'm exhausted because I'm just trying to get through the day. There is so much that I want to see and do, both big and small. I have a 'Wish List' on my phone to note down travels and experiences that I will hopefully get to do them one day. Some of them I have already done, such as go to Sorrento, Italy and visit LUSH Cosmetics on Oxford Street. Yet there are lots more I want to do including seeing Michael McIntyre perform live and walk across Carrick-a-rede Rope Bridge.
I recently started physiotherapy with Rebound Physio who specialise with people who have neurological conditions, as in order to combat my chronic fatigue I need to exercise. I'm unable to cause any pressure or strain to my head as it will only make my headache worse and cause me to feel generally unwell, therefore I'm unable to continue to go to spin classes and weight training. This is due to the brain injury caused from severe hydrocephalus and numerous operations, which has left me in constant pain. My headache should get better overtime but for now it is a waiting and guessing game as to when it will. In the meantime which I've mentioned on my Facebook page (The Brain Tumour Charity - Danielle McGriskin Fund), I'm seeing a pain specialist to find out what he can offer me. Today an Occupational Therapist came out to see me regarding a wheel chair. There is no way on earth that I imagined I would need a wheel chair, but for the times when I need to use it I know that I have it.
Thank you for being apart of my continuous journey. I can't tell you enough how much I appreciate all your love and support. I will still occasionally put updates on my Facebook Page of how I am doing and what I've been up to.
Danielle X
Wednesday, 13 July 2016
Saturday, 12 December 2015
Back in the Saddle
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.
Danielle X
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.
Danielle X
Friday, 31 July 2015
My Sailing Adventure: Part 2
Day 2
I woke up early on Tuesday morning to the gentle rocking of the boat, snuggled in my sleeping bag with the bright light of the morning sky shining through the small windows in me and Katy's cabin. Having never slept on a boat before; well apart from a short sleep on the ferry from Holyhead to Dublin on my way home from finishing IMRT radiotherapy, I slept surprisingly well. I guess it was from where I was baby being rocked back and forth in my mum or dad's arms, made the rocking feel natural and not like I was on an amusement park ride.
After rummaging through my 'wardrobe' of clothes tightly packed in my suitcase, Katy and I went to the shower and toilet facilities on port to get washed and dressed. This time there was no rain and crab on the dock with claws scattered across the wooden planks, but the feeling of the crisp sea air blowing in our bed head hair, and the sound of the seagulls as they glided above us in search of their breakfast.
We had breakfast on board our boat, then we gathered in the cockpit to be shown how to put on and use our lifejackets incase we went over board, and were each given our waterproof overalls and coat. We loved our matching waterproof overalls and coat, as we felt like true sailers/fishermen. Finally we were shown the key parts of the boat and then it was time to set sail for the first time.
We chartered the route we would be sailing to Port Bannatyne, just like you would before setting off on a car journey. I couldn't believe how beautiful the surroundings were, the blue sky above us, the green grassy mountains pulling away from the boat, and the sea beneath our feet. It made me think about how vast the ocean is and what it would be like to sail around the world, just like Ellen MacAruthur did. The weather was mixed throughout our journey, at times the sky was grey and the clouds full of water as is poured down on us, but it was also clear with the suns rays beaming down on Port Bannatyne. Thankfully we were prepared and had our waterproofs and sunglasses too.
As we sailed towards Port Bannatyne I spotted something grey peeping out of the water. I shouted to the Skipper Simon and volunteers who told me it was a porpoise. Then more porpoises began surfacing the water, it was incredible. I had never seen a porpoise before and I wasn't sure what they were.
For a quiet coastal village with only one post office and two pubs, Katy and I couldn't get over how frequent the bus kept going around the island. In comparison to where Katy lives, buses are practically extinct and where I live the bus only comes around twice a day to a non designated bus stop.
After we docked at Port Bannatyne Marina with the other three Ellen MacArthur Cancer Trust boats, we played games on land and ate the most delicious jam filled, sugar coated doughnuts. Later that evening Ian, Caroline, Dani, Jordan, Alex, Katy and I went for a walk to see more of the beautiful island. On our walk we came across the ruins of what was once a church. The roof of the grey stoned church had fallen into itself and was submerged with greenery growing within the building, which gave an eerie feeling as if the ground was swallowing it up.
Danielle X
I woke up early on Tuesday morning to the gentle rocking of the boat, snuggled in my sleeping bag with the bright light of the morning sky shining through the small windows in me and Katy's cabin. Having never slept on a boat before; well apart from a short sleep on the ferry from Holyhead to Dublin on my way home from finishing IMRT radiotherapy, I slept surprisingly well. I guess it was from where I was baby being rocked back and forth in my mum or dad's arms, made the rocking feel natural and not like I was on an amusement park ride.
After rummaging through my 'wardrobe' of clothes tightly packed in my suitcase, Katy and I went to the shower and toilet facilities on port to get washed and dressed. This time there was no rain and crab on the dock with claws scattered across the wooden planks, but the feeling of the crisp sea air blowing in our bed head hair, and the sound of the seagulls as they glided above us in search of their breakfast.
We had breakfast on board our boat, then we gathered in the cockpit to be shown how to put on and use our lifejackets incase we went over board, and were each given our waterproof overalls and coat. We loved our matching waterproof overalls and coat, as we felt like true sailers/fishermen. Finally we were shown the key parts of the boat and then it was time to set sail for the first time.
We chartered the route we would be sailing to Port Bannatyne, just like you would before setting off on a car journey. I couldn't believe how beautiful the surroundings were, the blue sky above us, the green grassy mountains pulling away from the boat, and the sea beneath our feet. It made me think about how vast the ocean is and what it would be like to sail around the world, just like Ellen MacAruthur did. The weather was mixed throughout our journey, at times the sky was grey and the clouds full of water as is poured down on us, but it was also clear with the suns rays beaming down on Port Bannatyne. Thankfully we were prepared and had our waterproofs and sunglasses too.
As we sailed towards Port Bannatyne I spotted something grey peeping out of the water. I shouted to the Skipper Simon and volunteers who told me it was a porpoise. Then more porpoises began surfacing the water, it was incredible. I had never seen a porpoise before and I wasn't sure what they were.
For a quiet coastal village with only one post office and two pubs, Katy and I couldn't get over how frequent the bus kept going around the island. In comparison to where Katy lives, buses are practically extinct and where I live the bus only comes around twice a day to a non designated bus stop.
After we docked at Port Bannatyne Marina with the other three Ellen MacArthur Cancer Trust boats, we played games on land and ate the most delicious jam filled, sugar coated doughnuts. Later that evening Ian, Caroline, Dani, Jordan, Alex, Katy and I went for a walk to see more of the beautiful island. On our walk we came across the ruins of what was once a church. The roof of the grey stoned church had fallen into itself and was submerged with greenery growing within the building, which gave an eerie feeling as if the ground was swallowing it up.
Danielle X
Tuesday, 28 July 2015
My Sailing Adventure: Part 1
I've found my new love in life, sailing. I had always wanted to try sailing, but I was never really sure how to go about it and if I would actually enjoy it. Sailing with the Ellen MacArthur Cancer Trust has been some of the best four days, which I still talk and think about almost everyday.
I've decided to write about my sailing adventure into around 3-4 smaller blog posts. In this first post I will be writing about the first day of my sailing adventure and what exciting activities I got up to, meeting others who have been through their own cancer journey and the incredible staff and volunteers of the trust who make the sailing trips possible.
Day 1
Monday 6th July 2015 morning, I woke up feeling both nervous and excited for the days ahead. I was dropped off at Belfast City Airport by my Dad, where I met my CLIC Sargent Social Worker Simon and the other young people from Northern Ireland who I would be joining on the trip. We flew to Glasgow and then took a taxi to Largs. The scenery during the car journey was beautiful, the rolling green hills were picture perfect and the crystal clear streams were very tranquil. When we arrived at port, we were invited to the Ellen MacArthur Cancer Trust office, where we met the crew, the other young people from across England and the volunteers. We then had lunch and played some introduction games so we got to know each other. We then found out who was going to be on each boat. There were four boats altogether, the boat I was on was called, Bluebird. The Skipper of our boat was called, Simon, and the volunteers were, Ian, Dani and Caroline. The young people were Jordan and Alex who were from England and Katy from Northern Ireland who I already knew. Then the exciting part (well, for Katy and I anyway), we got our branded Ellen MacArthur Cancer Trust top, cap, water bottle, bag, and a sailing log book too! We were like kids in a sweet shop, full of excitement. It was then time to bring our luggage to our boats and be shown around. I must of had the heaviest suitcase out of everybody, I could just about lift it off the ground. I packed everything besides the kitchen sink, and I didn't even wear half the clothes. I guess it was better to be prepared, especially when I had never been sailing before so I didn't know what to expect. That night Katy and I went to the shower and toilet facilities on port (which were really nice and clean), we dashed out in our flip-flops and pyjamas while it was pitch black, pouring with rain trying not to slip on the dock and fall into the dark icy cold water. We came across a crab just lying there on the dock with two of its claws detached from its body. On our way back to the boat the crab was no longer there, we were in hysterics at the fact a crab with two claws missing, somehow found it's way back into the water.
Danielle X
I've decided to write about my sailing adventure into around 3-4 smaller blog posts. In this first post I will be writing about the first day of my sailing adventure and what exciting activities I got up to, meeting others who have been through their own cancer journey and the incredible staff and volunteers of the trust who make the sailing trips possible.
Day 1
Monday 6th July 2015 morning, I woke up feeling both nervous and excited for the days ahead. I was dropped off at Belfast City Airport by my Dad, where I met my CLIC Sargent Social Worker Simon and the other young people from Northern Ireland who I would be joining on the trip. We flew to Glasgow and then took a taxi to Largs. The scenery during the car journey was beautiful, the rolling green hills were picture perfect and the crystal clear streams were very tranquil. When we arrived at port, we were invited to the Ellen MacArthur Cancer Trust office, where we met the crew, the other young people from across England and the volunteers. We then had lunch and played some introduction games so we got to know each other. We then found out who was going to be on each boat. There were four boats altogether, the boat I was on was called, Bluebird. The Skipper of our boat was called, Simon, and the volunteers were, Ian, Dani and Caroline. The young people were Jordan and Alex who were from England and Katy from Northern Ireland who I already knew. Then the exciting part (well, for Katy and I anyway), we got our branded Ellen MacArthur Cancer Trust top, cap, water bottle, bag, and a sailing log book too! We were like kids in a sweet shop, full of excitement. It was then time to bring our luggage to our boats and be shown around. I must of had the heaviest suitcase out of everybody, I could just about lift it off the ground. I packed everything besides the kitchen sink, and I didn't even wear half the clothes. I guess it was better to be prepared, especially when I had never been sailing before so I didn't know what to expect. That night Katy and I went to the shower and toilet facilities on port (which were really nice and clean), we dashed out in our flip-flops and pyjamas while it was pitch black, pouring with rain trying not to slip on the dock and fall into the dark icy cold water. We came across a crab just lying there on the dock with two of its claws detached from its body. On our way back to the boat the crab was no longer there, we were in hysterics at the fact a crab with two claws missing, somehow found it's way back into the water.
Danielle X
Wednesday, 1 July 2015
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
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
Sunday, 12 April 2015
Easter Time
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!
Danielle X
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!
Danielle X
Friday, 6 March 2015
A Flying Visit
I feel like a jet setter with yet another appointment at Southmead Hospital, this one was with my new neurologist. Dad and I only stayed in Bristol for one night - in total it was less than 24 hours that we were away from home, so there wasn't time for any adventures on this trip.
I don't know why but I felt sick to my stomach with nerves the day we were flying to Bristol (04/03/2015). I think it was because Bristol holds so many memories. It was where I was told I definitely had a brain tumour, it was where my biopsy took place which was a high risk operation, it was where my radiotherapy took place which was another big event in my life and where several operations for my hydrocephalus took place too. It also holds happy memories because my mum would always organise a treat for me, such as going to a coffee shop for tea and cake, or taking a drive around Bristol when I was feeling well enough to.
While my dad and I were enjoying a coffee inside the hospital I realised that I had left my handbag at CLIC House. Luckily one of the members of staff would be there so I could collect it after my appointment. Moments later the fire alarm went off, we all had to evacuate the building. It wasn't a real fire and I wondered if someone had burnt their toast as it was morning time. When we were allowed back inside the hospital we headed to the gate where neurology out patients appointments take place, when I suddenly realised that my notes my mum wrote out for me with a list of the medication I'm currently on and have previously taken, as well as other information I wanted to speak to my neurologist about was in my handbag at CLIC House. I panicked and frantically phoned mum who was home in Northern Ireland to text me all the information. I was so close to tears as this meeting was important to me to try and get an answer to my symptoms.
The outcome of the neurology appointment is that I've been given another medication which is to hopefully help with my headache. It was also confirmed that the blood patch I had in December 2014 has definitely not worked. Since I had the blood patch I began acupuncture, which has helped to ease some of my pain a little and has also helped me to sleep better too. Hopefully the new medicine will help my headache even more and I'll be able to do more normal activities such as going out of college for lunch instead of staying in. I'll just have to wait and see what happens so fingers crossed!
It was an eventful trip even though we were only there for less than 24 hours, perhaps it was a good thing that we weren't staying longer as who knows what else could have gone wrong.
Last Friday it was my old school, Hunterhouse College formal. I had an amazing time. I loved getting my nails, hair and make-up done for the event and wearing my super sparkly dress that shone as the light hit the sequins. I was so excited and my adrenaline helped me to get through the night. It was so nice to see my old school friends, some who I've not seen for a very long time. Everyone looked beautiful in their formal dresses. It will be a night to remember for a long time. It was very emotional for my mum as she was so worried I would not be well enough to go, but luckily I was, and I am very grateful to have not missed out on the special evening.
Danielle X
I don't know why but I felt sick to my stomach with nerves the day we were flying to Bristol (04/03/2015). I think it was because Bristol holds so many memories. It was where I was told I definitely had a brain tumour, it was where my biopsy took place which was a high risk operation, it was where my radiotherapy took place which was another big event in my life and where several operations for my hydrocephalus took place too. It also holds happy memories because my mum would always organise a treat for me, such as going to a coffee shop for tea and cake, or taking a drive around Bristol when I was feeling well enough to.
While my dad and I were enjoying a coffee inside the hospital I realised that I had left my handbag at CLIC House. Luckily one of the members of staff would be there so I could collect it after my appointment. Moments later the fire alarm went off, we all had to evacuate the building. It wasn't a real fire and I wondered if someone had burnt their toast as it was morning time. When we were allowed back inside the hospital we headed to the gate where neurology out patients appointments take place, when I suddenly realised that my notes my mum wrote out for me with a list of the medication I'm currently on and have previously taken, as well as other information I wanted to speak to my neurologist about was in my handbag at CLIC House. I panicked and frantically phoned mum who was home in Northern Ireland to text me all the information. I was so close to tears as this meeting was important to me to try and get an answer to my symptoms.
The outcome of the neurology appointment is that I've been given another medication which is to hopefully help with my headache. It was also confirmed that the blood patch I had in December 2014 has definitely not worked. Since I had the blood patch I began acupuncture, which has helped to ease some of my pain a little and has also helped me to sleep better too. Hopefully the new medicine will help my headache even more and I'll be able to do more normal activities such as going out of college for lunch instead of staying in. I'll just have to wait and see what happens so fingers crossed!
It was an eventful trip even though we were only there for less than 24 hours, perhaps it was a good thing that we weren't staying longer as who knows what else could have gone wrong.
Last Friday it was my old school, Hunterhouse College formal. I had an amazing time. I loved getting my nails, hair and make-up done for the event and wearing my super sparkly dress that shone as the light hit the sequins. I was so excited and my adrenaline helped me to get through the night. It was so nice to see my old school friends, some who I've not seen for a very long time. Everyone looked beautiful in their formal dresses. It will be a night to remember for a long time. It was very emotional for my mum as she was so worried I would not be well enough to go, but luckily I was, and I am very grateful to have not missed out on the special evening.
Danielle X
Wednesday, 7 January 2015
The meaning of...
It's been a while since I last posted on my blog...
I had a blood patch done early in December, in the hope of helping with my debilitating headache. This took place in Southmead Hospital, Bristol, after my neurosurgeon referred me to a new neurologist (someone who deals with the workings of the brain). A blood patch is done under local anaesthetic in an operating theatre under sterile conditions. I had been told before the procedure that it's a bit like having an epidural. The anaesthetist takes my own blood while another inserts it into my spine. Sadly the blood patch has not helped with my symptoms which was a huge disappointment, as I had high hopes that it would work. In fact, there isn't a word strong enough to describe the utter sadness and despair I felt when I realised that the procedure had not worked. It felt like it was my last hope in getting my headache under control, as I've tried all the pain medication there is and not one has helped in the slightest.
When I came home to Northern Ireland I felt sad as I knew that the blood patch was my last hope. I'm naturally a very positive person, I always see the glass as being half full, not half empty; but this time I felt I had lost the battle.
It's been several weeks since I've come back from Bristol after the blood patch and I'm feeling a little bit more positive. I've discussed with my mum and dad about trying alternative treatments to help with my symptoms. I now take two types of natural medicines and on Tuesday I began acupuncture with a charity called, Action Cancer. Action Cancer provides therapies like this and support to people affected by cancer. I had an idea of what to expect as my dad has had acupuncture on his arm quite recently and a friend of mine has had acupuncture too. After completing the usual "about you" forms in the waiting room which I find very boring, the acupuncture practitioner called me into her room. It was a small room packed with a desk, three chairs, book shelf, filing cabinet and in the centre of the room was the therapy bed. The practitioner was a small petite lady, who had a calming presence, just like the soothing music playing softly in the background from her CD player.
As she inserted the needles it felt like a small pinch. I'm not afraid of needles, partly because I'm practically a human pincushion now due to all the surgery and blood tests I've had over the years. I was more afraid of moving and knocking the needles out of place.
When I came home from having the acupuncture late that evening, I felt very tired, and went to bed quite quickly. I woke up the next morning feeling as if I had a good deep sleep, I don't normally sleep well due to the damage the hydrocephalus has caused to my brain.
I'm hopeful that the acupuncture will help with my headaches, pain around my eyes and chronic fatigue, even in the slightest way possible.
The meaning of my motto, "Stay Strong, Keep Positive... Always", isn't just about being positive all the time, it's about riding the waves of emotions that come with life and feeling them in order to stay strong and keep positive.
My mum and I taking a selfie in the operating theatre after my blood patch.
Danielle X
I had a blood patch done early in December, in the hope of helping with my debilitating headache. This took place in Southmead Hospital, Bristol, after my neurosurgeon referred me to a new neurologist (someone who deals with the workings of the brain). A blood patch is done under local anaesthetic in an operating theatre under sterile conditions. I had been told before the procedure that it's a bit like having an epidural. The anaesthetist takes my own blood while another inserts it into my spine. Sadly the blood patch has not helped with my symptoms which was a huge disappointment, as I had high hopes that it would work. In fact, there isn't a word strong enough to describe the utter sadness and despair I felt when I realised that the procedure had not worked. It felt like it was my last hope in getting my headache under control, as I've tried all the pain medication there is and not one has helped in the slightest.
When I came home to Northern Ireland I felt sad as I knew that the blood patch was my last hope. I'm naturally a very positive person, I always see the glass as being half full, not half empty; but this time I felt I had lost the battle.
It's been several weeks since I've come back from Bristol after the blood patch and I'm feeling a little bit more positive. I've discussed with my mum and dad about trying alternative treatments to help with my symptoms. I now take two types of natural medicines and on Tuesday I began acupuncture with a charity called, Action Cancer. Action Cancer provides therapies like this and support to people affected by cancer. I had an idea of what to expect as my dad has had acupuncture on his arm quite recently and a friend of mine has had acupuncture too. After completing the usual "about you" forms in the waiting room which I find very boring, the acupuncture practitioner called me into her room. It was a small room packed with a desk, three chairs, book shelf, filing cabinet and in the centre of the room was the therapy bed. The practitioner was a small petite lady, who had a calming presence, just like the soothing music playing softly in the background from her CD player.
As she inserted the needles it felt like a small pinch. I'm not afraid of needles, partly because I'm practically a human pincushion now due to all the surgery and blood tests I've had over the years. I was more afraid of moving and knocking the needles out of place.
When I came home from having the acupuncture late that evening, I felt very tired, and went to bed quite quickly. I woke up the next morning feeling as if I had a good deep sleep, I don't normally sleep well due to the damage the hydrocephalus has caused to my brain.
I'm hopeful that the acupuncture will help with my headaches, pain around my eyes and chronic fatigue, even in the slightest way possible.
The meaning of my motto, "Stay Strong, Keep Positive... Always", isn't just about being positive all the time, it's about riding the waves of emotions that come with life and feeling them in order to stay strong and keep positive.
Danielle X
Sunday, 16 November 2014
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
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
Sunday, 19 October 2014
Prize Giving
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.
Thank You"
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.
Thank You"
Wednesday, 8 October 2014
College Life
I can't believe September has come and gone already. I'm into my second month of college which is going great, this is my first year where I'm doing a BTEC in Business which I hope will lead me onto University. My sister Rebecca attends the same college, she is also in her first year of a Sports course which she enjoys. It's lovely that we're at the same college as we went to the same primary school but different secondary schools. I'm enjoying the course a lot and I've been able to go in everyday, which I wasn't sure if I could manage. The good thing about college is that if I miss a day or two because I'm not well, all the work is online, so I can catch up in my own time. I've two long days, 9-5pm, two shorter days and a day off each week, which I look forward to (I'll tell you why as you read on).
My health has been better and I hope it doesn't decline. I still have all my symptoms, headache, eye pain and vision disturbances in particular, but I've been managing these really well and having energy always helps. I've a few hospital appointments and an MRI scan of my brain coming up at the end of this month in Bristol, but as always I'm thinking of my motto which is, "Stay Strong, Keep Positive, Always...".
When I was younger (this is where I tell you why I like Thursdays) I use to do tap, modern and jazz dance. I loved taking part in the annual summer dance shows, wearing the different costumes and having my hair and make-up done was lots of fun, but then one day I decided to stop, then I became unwell with Annie (brain tumour) and Heidi (hydrocephalus) and until now I haven't been able to go back. I now help with the little ones at my dance school every Thursday for a couple of hours, which I just love, and it felt so good to put on a pair of tap and jazz shoes and shuffle (dance term) my feet once again. After my first day as "Assistant", my muscles got a little bit of a shock as the next day I had really achey legs, from where I've not used them in a while. Last week I was given a "Gillian Doogan School of Dance" t-shirt which says, "Assistant" on the back, I was so excited when I got it.
Last weekend my friend and I took Harry the Pug for a short walk at Hillsborough Forest, which is one of my favourite places. It's lovely to go there in the Autumn season when the leaves are falling off the trees, and they make a crunching sound as you walk on them in your wellieboots. It was great to do something "normal" and Harry loved it too, thankfully he was on his best behaviour and didn't chase any swans.
Danielle X
My health has been better and I hope it doesn't decline. I still have all my symptoms, headache, eye pain and vision disturbances in particular, but I've been managing these really well and having energy always helps. I've a few hospital appointments and an MRI scan of my brain coming up at the end of this month in Bristol, but as always I'm thinking of my motto which is, "Stay Strong, Keep Positive, Always...".
When I was younger (this is where I tell you why I like Thursdays) I use to do tap, modern and jazz dance. I loved taking part in the annual summer dance shows, wearing the different costumes and having my hair and make-up done was lots of fun, but then one day I decided to stop, then I became unwell with Annie (brain tumour) and Heidi (hydrocephalus) and until now I haven't been able to go back. I now help with the little ones at my dance school every Thursday for a couple of hours, which I just love, and it felt so good to put on a pair of tap and jazz shoes and shuffle (dance term) my feet once again. After my first day as "Assistant", my muscles got a little bit of a shock as the next day I had really achey legs, from where I've not used them in a while. Last week I was given a "Gillian Doogan School of Dance" t-shirt which says, "Assistant" on the back, I was so excited when I got it.
Last weekend my friend and I took Harry the Pug for a short walk at Hillsborough Forest, which is one of my favourite places. It's lovely to go there in the Autumn season when the leaves are falling off the trees, and they make a crunching sound as you walk on them in your wellieboots. It was great to do something "normal" and Harry loved it too, thankfully he was on his best behaviour and didn't chase any swans.
Danielle X
Friday, 8 August 2014
"101 Things To Do With A Radiotherapy Mask"
A few months ago I put a post on Facebook and Twitter asking you to help me write a list called, "101 Things To Do With A Radiotherapy Mask". Thank you to everyone who came up with an idea or two or even three, it was fun reading through all of them.
If you have an idea that's not on the list, then please post it on my Facebook Page or Tweet it to me so I can add it on and reach 101 things to do.
Have fun reading through them all and see if you can find yours.
Danielle X
1) Use it as a Halloween costume mask.
2) Use it as a fruit basket.
3) Turn it into a flower pot.
4) Mount it onto a wall as a decoration.
5) Frame it.
6) Decoupage it.
7) Paint it.
8) Use it as a hanging basket for flowers.
9) Wear it while having radiotherapy on your head.
10) Use it to keep bits and bobs in.
11) Make it into a lamp shade.
12) Use it to hang earrings on.
13) Use it as a fish tank decoration.
14) Decorate it to wear at a festival.
15) Make it into a face.
16) Use it as a manikin for a wig.
17) Display it somewhere for people to see.
18) Cover it in bling.
19) Use it to dress up as Hannibal Lecter.
20) Decorate it with ribbons.
21) Use it as a colander.
22) Use it as a hanging basket for fruit.
23) Use it as a hanging basket for vegetables.
23) Paint and glaze it to keep jewellery in.
24) Paint it with a face and smile then glaze it and use to show other kids what happens and not to be afraid when
having radiotherapy.
25) Use it as a jelly mould.
26) Use it as a miniature sandpit.
27) Use it as a salad bowl.
28) Use it when doing a lucky dip.
29) Use it as a bread basket.
30) Use it as a garden sculpture.
31) Wear it at a masked ball.
33) Use it as a door stopper.
34) Use to grow sweet peas.
34) Use as a base for a stunning flower arrangement.
35) Use to play pin the face on the mask, just like pin the tail on the donkey.
36) Use to keep nail polishes in.
37) Stuff some clothes and use the mask to make it into a face, as if there was a second person in the car, so you
could use the car pool lane.
38) Coat the mask in chocolate and create a lovely unique dessert.
39) Use it as a popcorn bowl.
40) Use it as a small washing basket.
41) Make it into a memory box to look back on in years to come.
42) Mount it on a stick and base to make it into your own version of the British Film Academy Award.
43) Use to blow bubbles with.
44) Turn it into a miniature gold fish bowl.
45) Use it as a hammock for a very small doll or teddy.
46) Put it in a tree to let birds use it as a nest.
47) Enter it in the Royal Academy of Arts summer exhibition.
48) Display it in the Ulster Museum.
49) Use as a Halloween pumpkin by putting a small light inside it.
50) Use it as a bed for a small pet.
51) Use it as a make-up brush holder.
52) Use it as a paintbrush holder.
53) Use it to keep make-up in.
54) Use as a mini basketball net for your desk when studying.
55) Put papier mâché into it and make another you.
56) Use as a book holder.
57) Use it to keep loose change in.
58) Use it as a cutlery holder.
59) Use it as a vase.
60) Thread wool through the holes to make a nice design.
61) Use it as a paper waste bin.
62) Stick leaves to the inside of the mask to make an art piece.
63) Use it as a wood basket for a fire.
64) Use it to display and sell #TeamDanielle and #DaniellesJourney wristbands.
65) Use it as a coal bucket.
66) Use it to store cotton buds in.
67) Use it as a candle holder and make into a nice display.
68) Use it as CD rack.
69) Use it as a DVD rack.
70) Weave twigs through the holes to make it into a nice decoration.
71) Create it into a bucket.
72) Use as a napkin holder.
73) Thread daisy's through the holes to make it into a unique daisy arrangement.
74) Use it to keep unmatched socks in.
75) Fill it with soil and grow daffodils in.
76) Use it as a toothbrush holder.
77) Use it as a fencing mask.
78) Use it as a sieve.
If you have an idea that's not on the list, then please post it on my Facebook Page or Tweet it to me so I can add it on and reach 101 things to do.
Have fun reading through them all and see if you can find yours.
Danielle X
1) Use it as a Halloween costume mask.
2) Use it as a fruit basket.
3) Turn it into a flower pot.
4) Mount it onto a wall as a decoration.
5) Frame it.
6) Decoupage it.
7) Paint it.
8) Use it as a hanging basket for flowers.
9) Wear it while having radiotherapy on your head.
10) Use it to keep bits and bobs in.
11) Make it into a lamp shade.
12) Use it to hang earrings on.
13) Use it as a fish tank decoration.
14) Decorate it to wear at a festival.
15) Make it into a face.
16) Use it as a manikin for a wig.
17) Display it somewhere for people to see.
18) Cover it in bling.
19) Use it to dress up as Hannibal Lecter.
20) Decorate it with ribbons.
21) Use it as a colander.
22) Use it as a hanging basket for fruit.
23) Use it as a hanging basket for vegetables.
23) Paint and glaze it to keep jewellery in.
24) Paint it with a face and smile then glaze it and use to show other kids what happens and not to be afraid when
having radiotherapy.
25) Use it as a jelly mould.
26) Use it as a miniature sandpit.
27) Use it as a salad bowl.
28) Use it when doing a lucky dip.
29) Use it as a bread basket.
30) Use it as a garden sculpture.
31) Wear it at a masked ball.
33) Use it as a door stopper.
34) Use to grow sweet peas.
34) Use as a base for a stunning flower arrangement.
35) Use to play pin the face on the mask, just like pin the tail on the donkey.
36) Use to keep nail polishes in.
37) Stuff some clothes and use the mask to make it into a face, as if there was a second person in the car, so you
could use the car pool lane.
38) Coat the mask in chocolate and create a lovely unique dessert.
39) Use it as a popcorn bowl.
40) Use it as a small washing basket.
41) Make it into a memory box to look back on in years to come.
42) Mount it on a stick and base to make it into your own version of the British Film Academy Award.
43) Use to blow bubbles with.
44) Turn it into a miniature gold fish bowl.
45) Use it as a hammock for a very small doll or teddy.
46) Put it in a tree to let birds use it as a nest.
47) Enter it in the Royal Academy of Arts summer exhibition.
48) Display it in the Ulster Museum.
49) Use as a Halloween pumpkin by putting a small light inside it.
50) Use it as a bed for a small pet.
51) Use it as a make-up brush holder.
52) Use it as a paintbrush holder.
53) Use it to keep make-up in.
54) Use as a mini basketball net for your desk when studying.
55) Put papier mâché into it and make another you.
56) Use as a book holder.
57) Use it to keep loose change in.
58) Use it as a cutlery holder.
59) Use it as a vase.
60) Thread wool through the holes to make a nice design.
61) Use it as a paper waste bin.
62) Stick leaves to the inside of the mask to make an art piece.
63) Use it as a wood basket for a fire.
64) Use it to display and sell #TeamDanielle and #DaniellesJourney wristbands.
65) Use it as a coal bucket.
66) Use it to store cotton buds in.
67) Use it as a candle holder and make into a nice display.
68) Use it as CD rack.
69) Use it as a DVD rack.
70) Weave twigs through the holes to make it into a nice decoration.
71) Create it into a bucket.
72) Use as a napkin holder.
73) Thread daisy's through the holes to make it into a unique daisy arrangement.
74) Use it to keep unmatched socks in.
75) Fill it with soil and grow daffodils in.
76) Use it as a toothbrush holder.
77) Use it as a fencing mask.
78) Use it as a sieve.
Wednesday, 30 July 2014
Young Ambassador
It was an early start on that Monday morning, as I woke from a deep sleep to the sound of my Dad saying, "Danielle it's time to get up, your going to be late." As I rolled over in my bed still half asleep, knowing that my Dad would have woken me up ten minutes early than when I needed to, I thought about the day ahead, meeting The Brain Tumour Charity again, the other young people who will be at The Charity's Young Ambassador event and how I wished there were only more hours in the day so I could squeeze in a visit to see my friend, Georgia.
As I finally pulled all my energy together and sat on the edge of my bed only for a few seconds, I got up and began to get ready. I already had a list of things in my head that I needed to do that morning before we left for the airport. I had laid my make-up brushes and products out that I wanted to wear the night before, I also had my outfit ready to put on and two more top choices just in case I changed my mind, as well as jewellery and a handbag of course.
Once my Dad pulled up outside Belfast International Airport, Mum and I said our goodbyes. After we got through security inside the terminal we had time to spare for a coffee. Soon after our energy fix we were boarding the airplane and flying high in the sky to Birmingham. It freaks me out a bit when the air hostess says, "you have reached your final destination", while the plane is making its way to its "plane parking space". I've never seen any of the movies, "Final Destination", but a friend told me what happened in the one she saw, so whenever an air hostess says, "you have reached your final destination", it always reminds me of the scary movie.
We arrived early for the event at the hotel in Solihull, so my Mum and I had a tasty breakfast and checked up on Facebook and Twitter.
As the other young people slowly arrived, I finally met Emma who set up The Colin Nugent Fund in memory of her Dad who sadly passed away from a brain tumour last year. We were both looking forward to the day ahead and were very proud that we had been chosen along with fourteen others by The Brain Tumour Charity to be their Young Ambassadors.
The event soon began and started with a few ice breakers. The first ice breaker involved writing our name on a sticky label, along with the name of who we would be if we were going to a fancy dress party. Of course one of my ideas was a pug in honour of my pug called Harry, but after hearing what some of the others had chosen I went for my other idea which was Elizabeth Swan from Pirates of the Caribbean, one of my favourite Disney movies.
After lunch each Young Ambassador was presented with a The Brain Tumour Charity hoody and badge. We were called up one by one to the front of the room and presented with our gifts by the lovely Elissa, The Charity's children and families worker. As I received my hoody and badge, Emma took a few snaps of me receiving my gift. It was a proud moment when I received them, as I felt like a true Young Ambassador to The Charity.
Throughout the day we completed different activities to help us prepare for our awareness raising work, such as designing objects and scenes. For another activity special guest Jimmy from the BBC, gave an interactive session on media. Jimmy gave us tips on how to speak on radio and the different types of questions that the interviewer could ask us, to give us some practice. It was good use for me to brush up on what I've already learnt, as I've been on radio, television and in the newspaper numerous times since I was fifteen years old, since setting up The Brain Tumour Charity - Danielle McGriskin Fund.
Unfortunately I had to leave half way through the session with Jimmy, as it was time for my Mum and I to catch our flight home. As we were in the taxi on our way to the airport, I told Mum all about the day I had, how it was nice talking to other young people who had been affected by a brain tumour, sharing our stories and experiences, as well as the activities we had done and meeting Jimmy to prepare us for being a Young Ambassador.
Thank you to The Brain Tumour Charity for giving me this wonderful opportunity.
Danielle X
As I finally pulled all my energy together and sat on the edge of my bed only for a few seconds, I got up and began to get ready. I already had a list of things in my head that I needed to do that morning before we left for the airport. I had laid my make-up brushes and products out that I wanted to wear the night before, I also had my outfit ready to put on and two more top choices just in case I changed my mind, as well as jewellery and a handbag of course.
Once my Dad pulled up outside Belfast International Airport, Mum and I said our goodbyes. After we got through security inside the terminal we had time to spare for a coffee. Soon after our energy fix we were boarding the airplane and flying high in the sky to Birmingham. It freaks me out a bit when the air hostess says, "you have reached your final destination", while the plane is making its way to its "plane parking space". I've never seen any of the movies, "Final Destination", but a friend told me what happened in the one she saw, so whenever an air hostess says, "you have reached your final destination", it always reminds me of the scary movie.
We arrived early for the event at the hotel in Solihull, so my Mum and I had a tasty breakfast and checked up on Facebook and Twitter.
As the other young people slowly arrived, I finally met Emma who set up The Colin Nugent Fund in memory of her Dad who sadly passed away from a brain tumour last year. We were both looking forward to the day ahead and were very proud that we had been chosen along with fourteen others by The Brain Tumour Charity to be their Young Ambassadors.
The event soon began and started with a few ice breakers. The first ice breaker involved writing our name on a sticky label, along with the name of who we would be if we were going to a fancy dress party. Of course one of my ideas was a pug in honour of my pug called Harry, but after hearing what some of the others had chosen I went for my other idea which was Elizabeth Swan from Pirates of the Caribbean, one of my favourite Disney movies.
After lunch each Young Ambassador was presented with a The Brain Tumour Charity hoody and badge. We were called up one by one to the front of the room and presented with our gifts by the lovely Elissa, The Charity's children and families worker. As I received my hoody and badge, Emma took a few snaps of me receiving my gift. It was a proud moment when I received them, as I felt like a true Young Ambassador to The Charity.
Throughout the day we completed different activities to help us prepare for our awareness raising work, such as designing objects and scenes. For another activity special guest Jimmy from the BBC, gave an interactive session on media. Jimmy gave us tips on how to speak on radio and the different types of questions that the interviewer could ask us, to give us some practice. It was good use for me to brush up on what I've already learnt, as I've been on radio, television and in the newspaper numerous times since I was fifteen years old, since setting up The Brain Tumour Charity - Danielle McGriskin Fund.
Unfortunately I had to leave half way through the session with Jimmy, as it was time for my Mum and I to catch our flight home. As we were in the taxi on our way to the airport, I told Mum all about the day I had, how it was nice talking to other young people who had been affected by a brain tumour, sharing our stories and experiences, as well as the activities we had done and meeting Jimmy to prepare us for being a Young Ambassador.
Thank you to The Brain Tumour Charity for giving me this wonderful opportunity.
Danielle X
Wednesday, 16 July 2014
Hospitals and Holidays
It wasn't a surprise that I was admitted into hospital in the middle of June, given that the last three summers I spent some time in hospital. During this time I prefer to call the hospitals; Costa del Royal, Costa del Frenchay and the latest, Costa del Southmead.
This summer I spent ten days in Costa del Southmead, or Southemead Hospital, Bristol, which isn't too bad considering last summer I spent several days in Frenchay Hospital, Bristol and then four weeks in Royal Hospital, Belfast.
After having a period of around six weeks of feeling extremely well after my ETV operation and IMRT radiotherapy, by this I mean I still had all my symptoms but the pain was a three out of ten on the pain score scale, my symptoms and pain started to increase and became unbearable. All I could do was lie on the sofa and watch TV, as my nausea was horrendous and would become worse if I was to walk short distances or travel in the car. I tried to live life as normal as possible as an MRI scan had been planned, four days of ICP monitoring and the removal of my shunt at the end of June beginning of July (the ETV drains the CFS fluid and my shunt was tied off, that's why a removal of my shunt was planned); but in the end my Mum contacted my consultant in Bristol who suggested I come over earlier for my MRI scan, and do some ICP monitoring as it sounded like hydrocephalus. ICP monitoring measures the pressure inside someone's head using a pressure monitor, which is inserted into the brain, this is also known as Intracranial Pressure Monitoring. It's difficult to distinguish between my tumour symptoms and my hydrocephalus symptoms, because they are very similar.
Despite feeling unwell, there was one very important thing I had to do before I would go to Bristol, and that was to visit the beauticians, us girls have our priorities!
Now that I'm seventeen I have been transferred to adult neurosurgery in Bristol, this meant attending the brand new Southmead Hospital. Only a few weeks earlier I was interviewed for BBC South West on the legacy of Frenchay Hospital, which had closed its services and transferred to Southmead and the new Bristol Children's Hospital. Southmead Hospital is enormous, the hospital wards aren't called wards but gates like in an airport, and there are corridors for patients and staff and corridors for visitors. Southmead Hospital is very different to the old nissen huts of Frenchay Hospital, but regardless of what the building looks like, the care was just as good.
One of the first things the medics do when you arrive into A&E is take bloods, which I dread. I dread this not because I'm scared of needles, but because my veins (as you probably know) are awful. I've been told that my big veins are like small veins and hard to get a needle into. After the torture I was admitted onto the neurosurgery ward which I was feeling nervous about, as once your admitted it's a mystery as to when you get discharged, besides who likes staying in hospital, especially during the summer!
I had to have a central line put in my neck, as I needed an MRI with contrast and more bloods taken. The nurses, doctors, phlebotomist and a paediatric/adult anaesthetist couldn't find a vein for my scan to take place. The next day another anaesthetist came round to try and find a vein, his name was Ben, and after taking his time to find one and only poking twice, he felt that I needed to revert to a central line. I immediately knew what was going to happen as I've had a central line inserted before under local anaesthetic. It's very unpleasant, as you can feel it when they are trying to push the central line down into the large vein towards the heart. Ben tried numerous times near my collarbone to get the line in, but unfortunately my veins were not allowing, so the next place was the side of my neck. Thinking back, I didn't really cry, apart from a few tears, probably because I had to stay very still and I tend to concentrate on something in the room to keep my mind distracted from what's happening.
Ben came to see me every morning, to make sure I was OK and that the line was still working. Unfortunately on the first day he came to see me he said he had to put two, or maybe it was four more stitches in, to stop the line from hanging and pulling on my neck (sorry if you're a bit squeamish).
Mum thought it would be a good idea to take a photo of Ben and I just before he began the procedure, at the time I thought Mum was a little crazy, but I'm glad she took the picture as it looks a bit spooky with Ben dressed in his sterile gown, mask and gloves, although it would make a very good Halloween costume if he squirted tomato ketchup down his front.
As my consultant reminded me my brain tumour is still there and will be giving me the majority of my symptoms, so I will never be symptom free. My consultant and I do not want to jump into more treatment just yet, as we need to give the radiotherapy a chance to do all that it needs to do in shrinking my tumour, and the longer I can hang on the better the chances of new treatments being available. So for now it is about symptom management and managing these individually. My ventricles (spaces in the brain where the CFS fluid flows) are big due to too much fluid, my consultant hoped that my ventricles would have reduced in size by now after the ETV surgery. Although they are big the ICP monitoring was normal, which indicates that I have normal brain pressure and that the ETV is working, but because my shunt gives me agonising localised pain and I find it hard to move my neck they took it out. My nausea has been a lot better since I was given a new combination of anti-nausea medication. I was referred to a pain consultant in Southmead, where I discussed my symptoms.
Since my shunt has been taken out I feel like an owl, in that I can now move my neck "the whole way round". I also don't suffer form localised pain from where the shunt used to be, on the right hand side of my head and neck as well as my abdomen.
After staying in hospital a little longer than I had expected, as we couldn't get my nausea under control, I was finally discharged and went back to CLIC House (a CLIC Sargent Home From Home). My sister, Rebecca, flew over to be with my Mum and I. After I was discharged we had been given the opportunity to have a short break away. I wasn't sure if I should go or not due to my symptoms, but I thought it doesn't matter where I am they will still be there, so we took a road trip around the South West of England, unfortunately my Dad couldn't be there with us as he had to go to work.
Before we left for our trip Mum and I visited a friend we met called, Dawn. Dawn is very inspirational, so generous and caring. She is an excellent writer and has a blog called, "Mind The Gap A-Z". She is going through her own challenges being diagnosed with a brain tumour a few years ago and earlier this year was then diagnosed with breast cancer. Dawn is always there to give me some great advice. Mum knew of her allotment and was very excited to see it. It was lovely to see all the individual plots together, full of colour.
Our first stop on our road trip was Devon, we had never been there before and we just loved driving through the little villages and taking in the beautiful scenery. We stayed at a friends house for the night. We met J, F, M and J last summer, when I was having the biopsy of my brain tumour. J who is an amazing little fighter, was undergoing treatment for his tumours, who we loved together with his sister and family. It was really nice to see them again as it had been a very long time. They live in the middle of the countryside and the kitchen and dining room of their house has large glass windows over looking rolling green grass fields. At the bottom of their garden there is a small pond, where newts, bugs and other pond life live. On a clear summers night when you look out of the large glass windows in the kitchen and dining room, you can see the sky full of twinkling stars. It's a truly beautiful place to live, so peaceful and calming, I was grateful for the chance to rest, enjoy the company and best of all little J is in remission and is doing very well.
The next day we headed off on the next part of our trip which was Cornwall, again we have never been to Cornwall before. In Cornwall a friend who we met again while staying at CLIC House over Christmas while I was having IMRT radiotherapy, kindly offered her beach house for us to stay in for a few nights. The beach house is near St Ives and over looks the Celtic Sea and vast Hayes Beach. I slept quite a lot at the beach house, but we managed to squeeze in a couple of trips out. We were so close to the bottom of England that we took a visit to Lands' End. My Mum, sister and I got our picture taken beside the famous landmark sign post, and I even got one saying, "The Danielle McGriskin Fund". We went late in the day and ended the trip with a lovely dinner at a hotel in Lands' End.
Unfortunately while walking the cobbled streets of St Ives I had a funny spell. My Mum was walking in front of me and my sister behind, when all of a sudden my vision went topsy turvy, everything was tilted to the right and I began falling to the right. I was able to call my Mum, and before I completely fell into a heap on the path, my vision went back to normal as well as my balance. It scared us all as this has never ever happened to me before. It was quite embarrassing really, as a few people stared as they walked pass, so I just wanted to carry on walking and get away as quickly as I could, but Mum made me sit down outside a cafe where a seagull then pooped on me, so it called for a nice café mocha to help with the shock of the dizzy spell and bird poop. I think I must have just pushed myself that little bit too much and my body was reminding me to slow down.
After a lovely time in Cornwall our travels continued to Torquay, where a charity called, Torbay Holiday Helpers Network (THHN) is based. THHN is a charity that has been set up by, Luke Tillen. Luke is the owner of a family run hotel in Babbacome called, Hotel De La Mer, where he not only runs his hotel for guests, but provides free holidays for families who have ill children. On arrival you are given a welcome pack with the opportunity of visiting many tourist attractions, days out and restaurants which are free to THHN families during their stay. During our holiday in Torbay, we visited Babbacombe Cliff Railway, Cliff Railway Cafe (who sell the most delicious ice-cream ever) and Hanbury's famous fish and chip shop/restaurant whose fish and chips were very delicious. I especially enjoyed the morning we went to Dartmouth on a steam train, the scenery was beautiful and I saw the "fat controller" (I didn't realise they're only called that in Thomas the Tank Engine oops!!). We sat in first class on the train, and then took a passenger ferry to Dartmouth and a short boat ride up the River Dart. We didn't stop for lunch or cream teas in Dartmouth as I was too exhausted. During our stay we saw two more families that we met at CLIC House and caught up with them. Thank you THHN and their lovely staff for making it a special time to remember.
Our trip to the South West of England flew by, and before we knew it we were on our flight back home to Northern Ireland. I am so glad of the break and it really was lovely to spend some time away.
Danielle X
This summer I spent ten days in Costa del Southmead, or Southemead Hospital, Bristol, which isn't too bad considering last summer I spent several days in Frenchay Hospital, Bristol and then four weeks in Royal Hospital, Belfast.
After having a period of around six weeks of feeling extremely well after my ETV operation and IMRT radiotherapy, by this I mean I still had all my symptoms but the pain was a three out of ten on the pain score scale, my symptoms and pain started to increase and became unbearable. All I could do was lie on the sofa and watch TV, as my nausea was horrendous and would become worse if I was to walk short distances or travel in the car. I tried to live life as normal as possible as an MRI scan had been planned, four days of ICP monitoring and the removal of my shunt at the end of June beginning of July (the ETV drains the CFS fluid and my shunt was tied off, that's why a removal of my shunt was planned); but in the end my Mum contacted my consultant in Bristol who suggested I come over earlier for my MRI scan, and do some ICP monitoring as it sounded like hydrocephalus. ICP monitoring measures the pressure inside someone's head using a pressure monitor, which is inserted into the brain, this is also known as Intracranial Pressure Monitoring. It's difficult to distinguish between my tumour symptoms and my hydrocephalus symptoms, because they are very similar.
Despite feeling unwell, there was one very important thing I had to do before I would go to Bristol, and that was to visit the beauticians, us girls have our priorities!
Now that I'm seventeen I have been transferred to adult neurosurgery in Bristol, this meant attending the brand new Southmead Hospital. Only a few weeks earlier I was interviewed for BBC South West on the legacy of Frenchay Hospital, which had closed its services and transferred to Southmead and the new Bristol Children's Hospital. Southmead Hospital is enormous, the hospital wards aren't called wards but gates like in an airport, and there are corridors for patients and staff and corridors for visitors. Southmead Hospital is very different to the old nissen huts of Frenchay Hospital, but regardless of what the building looks like, the care was just as good.
One of the first things the medics do when you arrive into A&E is take bloods, which I dread. I dread this not because I'm scared of needles, but because my veins (as you probably know) are awful. I've been told that my big veins are like small veins and hard to get a needle into. After the torture I was admitted onto the neurosurgery ward which I was feeling nervous about, as once your admitted it's a mystery as to when you get discharged, besides who likes staying in hospital, especially during the summer!
I had to have a central line put in my neck, as I needed an MRI with contrast and more bloods taken. The nurses, doctors, phlebotomist and a paediatric/adult anaesthetist couldn't find a vein for my scan to take place. The next day another anaesthetist came round to try and find a vein, his name was Ben, and after taking his time to find one and only poking twice, he felt that I needed to revert to a central line. I immediately knew what was going to happen as I've had a central line inserted before under local anaesthetic. It's very unpleasant, as you can feel it when they are trying to push the central line down into the large vein towards the heart. Ben tried numerous times near my collarbone to get the line in, but unfortunately my veins were not allowing, so the next place was the side of my neck. Thinking back, I didn't really cry, apart from a few tears, probably because I had to stay very still and I tend to concentrate on something in the room to keep my mind distracted from what's happening.
Ben came to see me every morning, to make sure I was OK and that the line was still working. Unfortunately on the first day he came to see me he said he had to put two, or maybe it was four more stitches in, to stop the line from hanging and pulling on my neck (sorry if you're a bit squeamish).
Mum thought it would be a good idea to take a photo of Ben and I just before he began the procedure, at the time I thought Mum was a little crazy, but I'm glad she took the picture as it looks a bit spooky with Ben dressed in his sterile gown, mask and gloves, although it would make a very good Halloween costume if he squirted tomato ketchup down his front.
As my consultant reminded me my brain tumour is still there and will be giving me the majority of my symptoms, so I will never be symptom free. My consultant and I do not want to jump into more treatment just yet, as we need to give the radiotherapy a chance to do all that it needs to do in shrinking my tumour, and the longer I can hang on the better the chances of new treatments being available. So for now it is about symptom management and managing these individually. My ventricles (spaces in the brain where the CFS fluid flows) are big due to too much fluid, my consultant hoped that my ventricles would have reduced in size by now after the ETV surgery. Although they are big the ICP monitoring was normal, which indicates that I have normal brain pressure and that the ETV is working, but because my shunt gives me agonising localised pain and I find it hard to move my neck they took it out. My nausea has been a lot better since I was given a new combination of anti-nausea medication. I was referred to a pain consultant in Southmead, where I discussed my symptoms.
Since my shunt has been taken out I feel like an owl, in that I can now move my neck "the whole way round". I also don't suffer form localised pain from where the shunt used to be, on the right hand side of my head and neck as well as my abdomen.
After staying in hospital a little longer than I had expected, as we couldn't get my nausea under control, I was finally discharged and went back to CLIC House (a CLIC Sargent Home From Home). My sister, Rebecca, flew over to be with my Mum and I. After I was discharged we had been given the opportunity to have a short break away. I wasn't sure if I should go or not due to my symptoms, but I thought it doesn't matter where I am they will still be there, so we took a road trip around the South West of England, unfortunately my Dad couldn't be there with us as he had to go to work.
Before we left for our trip Mum and I visited a friend we met called, Dawn. Dawn is very inspirational, so generous and caring. She is an excellent writer and has a blog called, "Mind The Gap A-Z". She is going through her own challenges being diagnosed with a brain tumour a few years ago and earlier this year was then diagnosed with breast cancer. Dawn is always there to give me some great advice. Mum knew of her allotment and was very excited to see it. It was lovely to see all the individual plots together, full of colour.
Our first stop on our road trip was Devon, we had never been there before and we just loved driving through the little villages and taking in the beautiful scenery. We stayed at a friends house for the night. We met J, F, M and J last summer, when I was having the biopsy of my brain tumour. J who is an amazing little fighter, was undergoing treatment for his tumours, who we loved together with his sister and family. It was really nice to see them again as it had been a very long time. They live in the middle of the countryside and the kitchen and dining room of their house has large glass windows over looking rolling green grass fields. At the bottom of their garden there is a small pond, where newts, bugs and other pond life live. On a clear summers night when you look out of the large glass windows in the kitchen and dining room, you can see the sky full of twinkling stars. It's a truly beautiful place to live, so peaceful and calming, I was grateful for the chance to rest, enjoy the company and best of all little J is in remission and is doing very well.
The next day we headed off on the next part of our trip which was Cornwall, again we have never been to Cornwall before. In Cornwall a friend who we met again while staying at CLIC House over Christmas while I was having IMRT radiotherapy, kindly offered her beach house for us to stay in for a few nights. The beach house is near St Ives and over looks the Celtic Sea and vast Hayes Beach. I slept quite a lot at the beach house, but we managed to squeeze in a couple of trips out. We were so close to the bottom of England that we took a visit to Lands' End. My Mum, sister and I got our picture taken beside the famous landmark sign post, and I even got one saying, "The Danielle McGriskin Fund". We went late in the day and ended the trip with a lovely dinner at a hotel in Lands' End.
Unfortunately while walking the cobbled streets of St Ives I had a funny spell. My Mum was walking in front of me and my sister behind, when all of a sudden my vision went topsy turvy, everything was tilted to the right and I began falling to the right. I was able to call my Mum, and before I completely fell into a heap on the path, my vision went back to normal as well as my balance. It scared us all as this has never ever happened to me before. It was quite embarrassing really, as a few people stared as they walked pass, so I just wanted to carry on walking and get away as quickly as I could, but Mum made me sit down outside a cafe where a seagull then pooped on me, so it called for a nice café mocha to help with the shock of the dizzy spell and bird poop. I think I must have just pushed myself that little bit too much and my body was reminding me to slow down.
After a lovely time in Cornwall our travels continued to Torquay, where a charity called, Torbay Holiday Helpers Network (THHN) is based. THHN is a charity that has been set up by, Luke Tillen. Luke is the owner of a family run hotel in Babbacome called, Hotel De La Mer, where he not only runs his hotel for guests, but provides free holidays for families who have ill children. On arrival you are given a welcome pack with the opportunity of visiting many tourist attractions, days out and restaurants which are free to THHN families during their stay. During our holiday in Torbay, we visited Babbacombe Cliff Railway, Cliff Railway Cafe (who sell the most delicious ice-cream ever) and Hanbury's famous fish and chip shop/restaurant whose fish and chips were very delicious. I especially enjoyed the morning we went to Dartmouth on a steam train, the scenery was beautiful and I saw the "fat controller" (I didn't realise they're only called that in Thomas the Tank Engine oops!!). We sat in first class on the train, and then took a passenger ferry to Dartmouth and a short boat ride up the River Dart. We didn't stop for lunch or cream teas in Dartmouth as I was too exhausted. During our stay we saw two more families that we met at CLIC House and caught up with them. Thank you THHN and their lovely staff for making it a special time to remember.
Our trip to the South West of England flew by, and before we knew it we were on our flight back home to Northern Ireland. I am so glad of the break and it really was lovely to spend some time away.
Danielle X
Thursday, 8 May 2014
Danielle Beating Annie
Well, I definitely wasn't expecting that positive news, not because I was thinking negatively, although it did cross my mind once or twice, but because my Oncologist had said that if my tumour was to shrink, that it would take up to a year or two, so we were only expecting the IMRT radiotherapy to delay the growth at this stage. Yes that's right, my brain tumour has shrunk, which was clear to see on the MRI scan. There is a bit of a downside, unfortunately the MRI scan did show that Heidi (hydrocephalus) could be playing up, as it showed what looks like possible hydrocephalus, although this could be my natural ventricle size, since I now have an ETV (the operation I had just before IMRT radiotherapy) and not a shunt which is pressure controlled. After I had the MRI scan I met with my Neurosurgeon and I explained how I was feeling, my current symptoms, how I had gone down hill a bit, and how I was feeling very well for around the first six weeks after I had finished IMRT radiotherapy. He decided that I should have an infusion study carried out immediately, which would tell us if my ETV was working or not and whether there was increased brain pressure. The testing consisted of a few needles being stuck in my head which connected to a machine to read the current pressure, having fluid pumped into my brain then another pressure reading taken, fluid drained out of my head, and finally a blood test. After some mathematical equations the good news is that the tests showed my ETV is working, so hopefully what looks like hydrocephalus on the MRI scan is just my natural pressure setting. To confirm what's going on in that little head of mine, I will be having an MRI scan in Bristol in two months time to check my ventricle sizes again and some more pressure monitoring which will last for a number of days. In the meantime I have to go to the optician each month to check that I don't get papilledema (swelling of the optic discs), which is a sign of high pressure in the brain. To check how Annie (brain tumour) is doing I have to have MRI scans six monthly, so I've another MRI scheduled for October. My Neurosurgeon is confident that I will be feeling much better by the end of the year, so for now I do what I can on my better days and rest on my bad days.
While in Bristol, my Mum and I took a spontaneous trip to Bath after I had the MRI scan, which is only an hour away. We had always wanted to visit Bath while we were in Bristol for my radiotherapy, but we never got round to it and I was feeling OK after the infusion study to go out and about for a while. Bath was very nice, the architecture of the buildings were very historic which I admired and there was a lovely green area beside the River Avon that was a great place to relax in the sun. Unfortunately our timing wasn't very good as we arrived late in the day, so the Bristol Roman Baths were closing, the Cathedral doors shut as we were walking towards them and the shops were closing too. We did enjoy a lovely ice-cream and sat on a bench enjoying the music of a local busker. We will definitely be back for a longer visit next time.
Later that evening when we got back to CLIC House (a CLIC Sargent Home From Home), my friends who I met when I was having IMRT radiotherapy who were also staying in CLIC House at the same time, arranged to have a movie night in. It was great to catch up with them as it had been quite a while since we'd last seen each other. There were plenty of nibbles (not the healthy ones) to go around, along with my favourite, pink lemonade.
The next day I received the superb news of my tumour. I celebrated with my "Home From Home" friends, Phoebe who had also finished treatment for her cancer and Flora, Phoebe's sister, by making homemade pizzas. They were so scrummy and very filling, so we had plenty left over. We had great fun making them, Phoebe was very creative and made her's with a cheesy stuff crust.
After being in Bristol for three days, my Mum and I drove by car the whole way across to the East of England to Lincolnshire, to visit my granny (my Mum's Mum), two Uncles, cousin Sarah and my Uncle's girlfriend. It was great to see them as it was Christmas and New Year since we last met. My Mum and I stayed at my Granny's house, on our way there we collected my cousin Sarah who was coming to stay too. We went out for dinner to an Italian restaurant, which was a great way to celebrate happy, happy, happy news of my brain tumour.
My Granny, cousin Sarah, Mum and I had a lovely day trip to Sandringham Estate and then to Hunstanton beach. Sandringham Estate was lovely, the buildings and grounds were really pretty and the weather was nice and warm. We hadn't initially planned on going, but seeing as it was on our way to the beach we just had to see if the Queen was in; she wasn't so we had a look around part of the gardens, visited the Church that the Royal family attend on Christmas Day and had tea and cake in the tea shop. After our quick visit to Sandringham Estate we then went to the beach, as the wind was cold and bitter we didn't stay long, but stopped for a lovely plate of fish and chips indoors.
Over the Easter holidays my family and I stayed at Northern Ireland Cancer Fund for Children's new respite centre, Daisy Lodge. We've stayed here a few times before over the years, when it was Shimna Valley. The new build is very modern and has large windows allowing a beautiful view of the Mourne Mountains, where Daisy Lodge is nestled under. It's a great place to rest and relax and meet other families going through a similar situation as my family. The new building is extremely modern and it's like staying in a hotel. It's great being able to spend some quality time with my family, as since my diagnosis we haven't been able to go on holiday abroad, as I've spent the last three summers in hospital and this summer will be the same, I miss those precious summer family holidays.
After shopping last week to find the perfect dress for "The May Ball”, an event being held at Titanic Belfast on 17th May in aid of my Fund with The Brain Tumour Charity, The Danielle McGriskin Fund, I’ve finally found a beautiful and very (very) sparkly ball gown for the occasion. I’m looking forward to meeting the 500 guests who will be attending this special event, as well as welcoming Neil and Angela Dickson, the founders of The Brain Tumour Charity to Northern Ireland. The event will be raising vital funds for research into brain tumours as well as awareness, while having a fun night out with local star May McFettridge who’ll be doing the auction. Thank you to everyone who has helped bring this special event together.
You may already follow (@_StephensStory) or have seen on the news about a teenager called, Stephen Sutton. Stephen is nineteen and has incurable cancer. Despite this he is enjoying life as much as possible, while raising funds for an excellent charity called, Teenage Cancer Trust and showing people how he is staying positive with all he is going through. Stephen and I have been following each other on Twitter for a while, through reading his posts he has inspired me like so many others and I hope he keeps well in himself under very difficult times.
Danielle X
While in Bristol, my Mum and I took a spontaneous trip to Bath after I had the MRI scan, which is only an hour away. We had always wanted to visit Bath while we were in Bristol for my radiotherapy, but we never got round to it and I was feeling OK after the infusion study to go out and about for a while. Bath was very nice, the architecture of the buildings were very historic which I admired and there was a lovely green area beside the River Avon that was a great place to relax in the sun. Unfortunately our timing wasn't very good as we arrived late in the day, so the Bristol Roman Baths were closing, the Cathedral doors shut as we were walking towards them and the shops were closing too. We did enjoy a lovely ice-cream and sat on a bench enjoying the music of a local busker. We will definitely be back for a longer visit next time.
Later that evening when we got back to CLIC House (a CLIC Sargent Home From Home), my friends who I met when I was having IMRT radiotherapy who were also staying in CLIC House at the same time, arranged to have a movie night in. It was great to catch up with them as it had been quite a while since we'd last seen each other. There were plenty of nibbles (not the healthy ones) to go around, along with my favourite, pink lemonade.
The next day I received the superb news of my tumour. I celebrated with my "Home From Home" friends, Phoebe who had also finished treatment for her cancer and Flora, Phoebe's sister, by making homemade pizzas. They were so scrummy and very filling, so we had plenty left over. We had great fun making them, Phoebe was very creative and made her's with a cheesy stuff crust.
After being in Bristol for three days, my Mum and I drove by car the whole way across to the East of England to Lincolnshire, to visit my granny (my Mum's Mum), two Uncles, cousin Sarah and my Uncle's girlfriend. It was great to see them as it was Christmas and New Year since we last met. My Mum and I stayed at my Granny's house, on our way there we collected my cousin Sarah who was coming to stay too. We went out for dinner to an Italian restaurant, which was a great way to celebrate happy, happy, happy news of my brain tumour.
My Granny, cousin Sarah, Mum and I had a lovely day trip to Sandringham Estate and then to Hunstanton beach. Sandringham Estate was lovely, the buildings and grounds were really pretty and the weather was nice and warm. We hadn't initially planned on going, but seeing as it was on our way to the beach we just had to see if the Queen was in; she wasn't so we had a look around part of the gardens, visited the Church that the Royal family attend on Christmas Day and had tea and cake in the tea shop. After our quick visit to Sandringham Estate we then went to the beach, as the wind was cold and bitter we didn't stay long, but stopped for a lovely plate of fish and chips indoors.
Over the Easter holidays my family and I stayed at Northern Ireland Cancer Fund for Children's new respite centre, Daisy Lodge. We've stayed here a few times before over the years, when it was Shimna Valley. The new build is very modern and has large windows allowing a beautiful view of the Mourne Mountains, where Daisy Lodge is nestled under. It's a great place to rest and relax and meet other families going through a similar situation as my family. The new building is extremely modern and it's like staying in a hotel. It's great being able to spend some quality time with my family, as since my diagnosis we haven't been able to go on holiday abroad, as I've spent the last three summers in hospital and this summer will be the same, I miss those precious summer family holidays.
After shopping last week to find the perfect dress for "The May Ball”, an event being held at Titanic Belfast on 17th May in aid of my Fund with The Brain Tumour Charity, The Danielle McGriskin Fund, I’ve finally found a beautiful and very (very) sparkly ball gown for the occasion. I’m looking forward to meeting the 500 guests who will be attending this special event, as well as welcoming Neil and Angela Dickson, the founders of The Brain Tumour Charity to Northern Ireland. The event will be raising vital funds for research into brain tumours as well as awareness, while having a fun night out with local star May McFettridge who’ll be doing the auction. Thank you to everyone who has helped bring this special event together.
You may already follow (@_StephensStory) or have seen on the news about a teenager called, Stephen Sutton. Stephen is nineteen and has incurable cancer. Despite this he is enjoying life as much as possible, while raising funds for an excellent charity called, Teenage Cancer Trust and showing people how he is staying positive with all he is going through. Stephen and I have been following each other on Twitter for a while, through reading his posts he has inspired me like so many others and I hope he keeps well in himself under very difficult times.
Danielle X
Wednesday, 9 April 2014
A Little Update Before I Go To Bristol
My symptoms haven't got any worse since my last blog post which is fantastic, although they haven't got any better and I'm finding I get very tired quite easily. The tiredness suddenly hit me like a ton of bricks one day, I think it's from having IMRT radiotherapy as that's one of the side effects and hopefully it will improve over time.
I'm holding a ball in May in aid of my Fund with The Brain Tumour Charity. The ball is being held at Titanic Belfast where 470 guests will enjoy a drinks reception, five course meal, auction by local star May McFettridge, raffle, live entertainment and more. My Mum and I along with a couple of friends went to Titanic Belfast to food taste and finalise the menu for the night. It was my first time food tasting for an event, which was great fun trying different tasty dishes and desserts. The hard part was choosing which dishes will be served to each of the guests, as they were all delicious.
A few weeks ago I was interviewed by the lovely Vinny Hurrell, on his show #TheClinic on Blast 106, which is a local radio station here in Northern Ireland. It was my first time going to a radio studio which was very exciting, but also quite nerve-racking too as I didn't know what to expect. Vinny asked me questions about my journey, my Fund with The Brain Tumour Charity called, The Danielle McGriskin Fund and The Brain Tumour Charity's awareness campaign called, HeadSmart: Be Brain Tumour Aware. I enjoy and get a buzz from being interviewed. I've often thought about becoming a presenter or interviewer as a career. I hope by talking about these topics through the media, that the listeners or viewers will become more aware of brain tumours and understand how more cancer research funding needs to be spent on research into brain tumours, as it currently receives less than 2% of all cancer research funding here in the UK, yet they're the biggest cancer killer of children and adults under 40. Vinny was very impressed with how I interviewed, which was great to get this feedback as I always want to do my best. He said that I spoke better than some people he has interviewed from the BBC which was a huge compliment. I hope to be on his show again in the future.
It's an unbelievable honour to announce that I was presented with a certificate of 5% share of a National Hunt race horse, by Realta Horse Racing Club. The filly has officially been named after my blog, Danielle's Journey. This means any winnings from Danielle's Journey will be going to my Fund with The Brain Tumour Charity, The Danielle McGriskin Fund, where all proceeds will be going directly into research into brain tumours. Danielle's Journey is a beautiful horse and I had the privilege of meeting her at the stables and watch her train a couple of weeks ago. I know she will be successful and I look forward to watching her at many races when she is ready.
My family and I saw Miranda Hart live in Belfast. I really enjoyed her performance and thought it was a hilarious and a tummy tightening show from laughing so much, especially when Miranda performed to a Beyoncé song at the end. I love Miranda Hart's TV show and I've also read her book too, both are very funny and her book is definitely a must read.
Mother's Day this year was very relaxed, we stayed at home as Mum wanted to do her gardening. Dad cooked a lovely dinner (with the help of M&S Mother's Day meal deal). I found this picture below of my Mum, younger sister Rebecca and I when we went to a family friends wedding. My Mum is wonderful, strong and beautiful, Rebecca and I love you so much and appreciate everything you do for us.
I was interviewed by Big T from Downtown Radio (which is another radio station here in Northern Ireland) a while ago. This interview was about the new CLIC Sargent in Northern Ireland Homes From Home Appeal. CLIC Sargent in Northern Ireland have opened up their first Homes From Home for children, and they will be opening their second Homes From Home for teenagers and young people sometime soon. CLIC Sargent have Homes From Home where families can stay while their children are undergoing treatment for cancer. My family and I have been able to use one of their Homes From Home each time we go to Bristol, which has been invaluable to us. I was delighted to be apart of this appeal, especially as it's local and CLIC Sargent in Northern Ireland have been a huge support to my family and I.
I head off to Bristol later today (09/04/2014) as I'll be having my first MRI scan since IMRT radiotherapy tomorrow (10/04/2013) and I've my first appointment with my oncologist on Friday since treatment. The MRI scan will give a base line of how everything is since radiotherapy. I'm feeling a bit nervous but staying positive as always, as my motto goes, "Stay Strong, Keep Positive... Awlays". Thankfully I'll be receiving the results of the scan on Friday when I see my oncologist, so there won't be any waiting around which is good. After I get the scan results my Mum and I will be travelling to the other side of England to visit my Mum's side of the family. It will be a long old journey, but it will be really nice to see my Granny and cousin who I've not seen since Christmas.
Danielle X
I'm holding a ball in May in aid of my Fund with The Brain Tumour Charity. The ball is being held at Titanic Belfast where 470 guests will enjoy a drinks reception, five course meal, auction by local star May McFettridge, raffle, live entertainment and more. My Mum and I along with a couple of friends went to Titanic Belfast to food taste and finalise the menu for the night. It was my first time food tasting for an event, which was great fun trying different tasty dishes and desserts. The hard part was choosing which dishes will be served to each of the guests, as they were all delicious.
A few weeks ago I was interviewed by the lovely Vinny Hurrell, on his show #TheClinic on Blast 106, which is a local radio station here in Northern Ireland. It was my first time going to a radio studio which was very exciting, but also quite nerve-racking too as I didn't know what to expect. Vinny asked me questions about my journey, my Fund with The Brain Tumour Charity called, The Danielle McGriskin Fund and The Brain Tumour Charity's awareness campaign called, HeadSmart: Be Brain Tumour Aware. I enjoy and get a buzz from being interviewed. I've often thought about becoming a presenter or interviewer as a career. I hope by talking about these topics through the media, that the listeners or viewers will become more aware of brain tumours and understand how more cancer research funding needs to be spent on research into brain tumours, as it currently receives less than 2% of all cancer research funding here in the UK, yet they're the biggest cancer killer of children and adults under 40. Vinny was very impressed with how I interviewed, which was great to get this feedback as I always want to do my best. He said that I spoke better than some people he has interviewed from the BBC which was a huge compliment. I hope to be on his show again in the future.
It's an unbelievable honour to announce that I was presented with a certificate of 5% share of a National Hunt race horse, by Realta Horse Racing Club. The filly has officially been named after my blog, Danielle's Journey. This means any winnings from Danielle's Journey will be going to my Fund with The Brain Tumour Charity, The Danielle McGriskin Fund, where all proceeds will be going directly into research into brain tumours. Danielle's Journey is a beautiful horse and I had the privilege of meeting her at the stables and watch her train a couple of weeks ago. I know she will be successful and I look forward to watching her at many races when she is ready.
My family and I saw Miranda Hart live in Belfast. I really enjoyed her performance and thought it was a hilarious and a tummy tightening show from laughing so much, especially when Miranda performed to a Beyoncé song at the end. I love Miranda Hart's TV show and I've also read her book too, both are very funny and her book is definitely a must read.
Mother's Day this year was very relaxed, we stayed at home as Mum wanted to do her gardening. Dad cooked a lovely dinner (with the help of M&S Mother's Day meal deal). I found this picture below of my Mum, younger sister Rebecca and I when we went to a family friends wedding. My Mum is wonderful, strong and beautiful, Rebecca and I love you so much and appreciate everything you do for us.
I was interviewed by Big T from Downtown Radio (which is another radio station here in Northern Ireland) a while ago. This interview was about the new CLIC Sargent in Northern Ireland Homes From Home Appeal. CLIC Sargent in Northern Ireland have opened up their first Homes From Home for children, and they will be opening their second Homes From Home for teenagers and young people sometime soon. CLIC Sargent have Homes From Home where families can stay while their children are undergoing treatment for cancer. My family and I have been able to use one of their Homes From Home each time we go to Bristol, which has been invaluable to us. I was delighted to be apart of this appeal, especially as it's local and CLIC Sargent in Northern Ireland have been a huge support to my family and I.
I head off to Bristol later today (09/04/2014) as I'll be having my first MRI scan since IMRT radiotherapy tomorrow (10/04/2013) and I've my first appointment with my oncologist on Friday since treatment. The MRI scan will give a base line of how everything is since radiotherapy. I'm feeling a bit nervous but staying positive as always, as my motto goes, "Stay Strong, Keep Positive... Awlays". Thankfully I'll be receiving the results of the scan on Friday when I see my oncologist, so there won't be any waiting around which is good. After I get the scan results my Mum and I will be travelling to the other side of England to visit my Mum's side of the family. It will be a long old journey, but it will be really nice to see my Granny and cousin who I've not seen since Christmas.
Danielle X
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