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

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

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

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

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

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

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