I know, I have been a terrible blogger. I've not blogged in around five months, and I didn't even finish telling you about my sailing adventure with The Ellen MacArthur Cancer Trust over the summer. But I'm back now, to give a quick update on how I am health wise, about my college life, and life in general.
If you follow me on my Facebook and Twitter pages, then you'll know the fantastic news that I received in late October. After flying to Bristol for my yearly MRI scan of my brain, I met with my wonderful oncologist the next day, who told me that my tumour is stable. Honestly, when I first received the news I was a bit worried. I was thinking about how my tumour had shrunk by 2mm, then 1mm, and now it is stable which means it's neither shrunk nor grown. I was worried because I was thinking what if it doesn't shrink anymore, or what if it begins to grow, as the radiotherapy I had for six weeks over 2013/2014 has done everything that it can do. After having time to think, I feel much more confident as I'm looking on the positive side, than when I first received my results.
My health in general has been much better in comparison to how I was this time last year. Like I always say, I need to plan my days and weeks, and balance my college life with my social life. If I don't, then it's a downward spiral. Action Cancer has been extremely kind to me. I began having acupuncture with the charity around this time last year. They have allowed me to continue receiving the alternative treatment with them, as I find it really helps me to manage my chronic fatigue. Thank you to another wonderful charity for their great support.
I thoroughly enjoy college. I love everything about it from the course, to seeing my friends. I'm doing a BTEC Level 3 Extended Diploma in Business, which is equivalent to three and a half A-Levels. The work isn't easy, but because it's all coursework and not exams which involves using your memory, my wee brain is able to manage brilliantly (GO BRAIN!). I'm into my second and final year of the course. My overall result for my first year was Distinction* Distinction* (D*D*). I have applied to and hope to go to University next year to do one of the following, Business Management, Business Studies, Marketing, Human Resource Management, or Human Resource Management and Marketing. I want to stay in Northern Ireland, but move out of my family home. Due to my health, it means I know if I'm having a bad period I can always go home and rest up well, but still have the independence of living away at the same time.
I have reached another big milestone in my life, as many other people have too. I passed my driving test last Saturday with one out of a total of fifteen minors! This was another big achievement in my life, after having to wait a year before I could receive my provisional license as I had radiotherapy, while hoping at the same time that I would be allowed to drive, I am now officially on the roads.
I am one of eleven Young Ambassadors for The Brain Tumour Charity. Sadly one of our fellow Young Ambassador and friend, passed away last week from her brain tumour. She fought her hardest, with strength and courage. I only got to meet her once at our first Young Ambassador meet up, but she will be remembered for being kind, funny, and inspiring to all. I have lost two other friends who both passed away from cancer this year. I met Ellie and Jessica at CLIC Sargent's Home from Home in Bristol while I received radiotherapy. We were staying there at the same time, and due to our circumstances I grew close to both of them. Ellie's family and mine even shared Christmas together at the Home from Home.
Over this Christmas period I will be thinking of families and friends who have lost their loved ones.
I 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.
It was an early Wednesday morning when my mum and I caught our flight to Bristol. I love being up at this time of the morning to see the sunrise with the beautiful colours in the sky (although this is a very rare occasion).
You've guessed it, I'm blogging about another trip to Bristol, where I found out how Annie and Heidi have be doing, as well as an appointment with the pain specialist.
I know for some of you who "like" or "Follow" my Facebook or Twitter Pages may already know, but I'll share with you once again the amazing news that my brain tumour has shrunk by a further 1mm. I am so pleased with my Annie (well done to you Annie for letting the IMRT radiotherapy do its job), however Heidi is still giving me problems. Without sounding too medical one of my ventricles is large, but the pressure measurement was fine in June, so I'm not sure why I still feel so exhausted and in a lot of pain. I wish to get the six weeks back when I felt amazingly well, this was immediately after my IMRT radiotherapy which finished in January 2014. I was able to enjoy taking Harry the pug for walks in the cool crisp air, and I was able to exercise too. I felt as if my head was connected properly, and not suffering from a huge amount of pain. Sadly this only lasted a short period of time, and I am determined to exhaust every avenue to get that time back again. My oncologist who is so caring and understanding, felt that my case should be discussed at the next multi disciplinary meeting (MDM). I got a phone call this week to inform me that another trip to Bristol will be needed to have four days of pressure monitoring (in June it was over one day), this will mean more surgery, and a referral to a new neurologist to look at pain management. I have not said too much, but I am unable to attend college every day and with every week I am going in less and less. It's frustrating and I've felt angry at not being able to be spontaneous and go out when I want, or even carry out everyday tasks without feeling completely exhausted and in pain. For now I am trying to keep up with my college work, while waiting for a date to travel to Bristol once again.
Going to Bristol means many hospital appointments and on occasions surgery, but also the opportunity to explore and meet with friends I've made. My mum always makes sure that I remember my trips with smells of freshly cooked cakes and pastries, and not of clinical smells that hospitals have. I visited my favourite tea shop in Bristol called, The Tea Birds. I enjoy the delicious dainty sandwiches and of course their loose leaved earl grey tea. My mum also found a quaint french patisserie. Mum is great at spotting good tea and coffee shops from the car on our travels to and from hospital, and this one was a real treasure. Not far from Southmead Hospital tucked amongst a row of various shops, we managed to park right outside L'Artisan (that's why I always go to tea shops as mum can usually park outside without the need to walk too far). L'Artisan is a patisserie run by a lovely french lady and her husband, together with their french waitresses. I spied my favourite through the glass window in the display cabinet, macaroons. Of course mum got chatting to the owners, and we found out that all the cakes and pastries are made by the husband who is a trained pastry chef. This french patisserie is a little piece of France located near the heart Bristol.
Appointments over another road trip was ahead of us, and so we began the long journey from the west of England to the east of England. This was a special trip, a charity event for my Fund (The Brain Tumour Charity - Danielle McGriskin Fund) which was organised by one of my mum's old boarding school friends. The fundraiser was attended by my mum's old school friends, who she had not seen for nearly 30 years. It was nice to finally meet them from stories my mum has told me about her boarding school days.
Halfway through our five hour trip to Norfolk, we realised that we had left most of our clothes at the CLIC Sargent Home from Home in Bristol. The dilemma was quickly resolved, as I decided to buy new clothes for the event. Mum ran into my favourite shop called, Topshop for me as I was feeling very tired and sore, and made a quick purchase of new clothes (in fact she bought the same dress as I was going to wear but had left behind in CLIC House).
My mum's friend Lesley organised a great night with music, delicious food and lots of raffle prizes too. I spied a lovely enormous cake which was decorated with my Fund's logo. Lesley insisted I took it home with me, I think I might have told her that this cake was the first cake to have my Fund's logo on it. I was delighted and determined to get it back to Northern Ireland in one piece. Mum had her doubts as she reminded me that you are only allowed one hand luggage on the plane, so the challenge was how do we smuggle the cake on board. It nearly didn't happen, my lovely decorated cake with a swirly cream topping and intricate details weighed a tone. We managed to get to the airport in the most horrendous downpour, the cake sat in its purpose built box, but there was a dash from the car park to the airport entrance and the rain was not going to stop. We never travel light, so between hand luggage and suitcases mum and I dashed across the airport car park. The box holding the cake got wet and the handle torn, but we carried on. Through the security x-ray machine the cake went and out the other end in one piece, no questions were asked. The cake had moved to the side of the box and so the icing was flattened, but it was still OK. Now for the long walk to gate 88 to catch the flight home. Mum was in charge of the cake and just as we thought it was safe, a man turned quickly and knocked the cake box out of mum's hand. The cake rolled out of the torn box in front of hurried passengers going by. Mum frantically rescued the cake, and although it was a little battered it was still edible. My mum carried the cake and found a member of airport staff who got another box. With the cake safely in a new box, we somehow managed to get both our hand luggage and the cake onto the plane with no questions asked. I have to say, it may not have looked so amazing and a little more battered and bruised by the time we got home, but with a dust down it tasted delicious.
I was invited on two occasions as Guest of Honour by my Principle from my old grammar school, Hunterhouse College, to give a motivational speech to the girls on their Junior and Senior Prize Giving, along with their parents/guardian, teachers and the Board of Governors. My speech was about my journey, fundraising and not giving up on your goals.
My Mum recorded my speech from the Junior Prize Giving and I thought it would be nice to share with you on my blog.
Danielle X
"I would like to thank Mr. Gibson, for inviting me to your Junior Prize Giving this afternoon. It was a great surprise and honour to be asked to speak at this special event. I have given speeches on different occasions before, but I have to say that I feel very privileged to be given this opportunity to share my experience of school life with you all today, so here it goes.
Good afternoon Mr. Gibson, board of governors, teachers, students, parents and guardians, my name is Danielle McGriskin, and I was a pupil at Hunterhouse College, only one year ago, so I remember it very well.
It wasn't a straight forward transfer from Primary School to Hunter House College the school of my choice. I didn't receive the 11+ grade to be accepted, and as you can imagine this was a huge disappointment. So I began secondary school believing that if I worked hard and revised really well for the entrance exam, I could re-apply to Hunterhouse for year 9. For me Hunterhouse wasn't just about the great academic achievements, it wasn't the school that any of my primary school friends had chosen, but I knew when I visited the school on open day that it was about the opportunities, support and the friends that I would make. I wasn't a follower and decided to go with my own gut feeling, so I was delighted when I got accepted and began Hunterhouse College in year nine.
I remember my first day like it was yesterday, the sweeping driveway with its towering trees on either side, and the welcoming school sign above the entrance door. I was extremely nervous especially as I didn't know anybody, yet I was so excited to be given this opportunity to learn in a welcoming and homely environment. As my first few days went on, I made a few friends, began to know my teachers and tried not to get lost.
After a great year in year 9, I began to feel unwell at the end of the summer holidays, my health continued to get worse throughout year 10. I had many symptoms such as, headache, dizziness, blurred vision, pain around my eyes, visual disturbances and tiredness. I tried not to let my symptoms get in the way of my school and social life, and I tried to hide them, but they gradually got worse and I found it harder to carry on. Despite visiting my GP on numerous occasions as well as a Neurologist, a doctor who diagnoses and treats problems to do with the brain, they said that I was feeling this way because I’m a teenager, that it was just stress related, and probably migraines too.
As soon as stress was mentioned my mother like any other mum encouraged me to take up more exercise. When the announcement at school assembly for cross country came up, I decided to join. My symptoms kept getting worse but I still ran with a thumping headache, and Mrs McClenaghan was always so encouraging as I was usually the last one back to school. Despite this I really enjoyed running and I hope I can take it up again. In my Spanish classes I was frustrated at not being able to remember the different phrases and words, especially when tests and exams came up. Once in my English class we were put into groups, and we were each given lines to learn from a book that we were reading, I was given the shortest amount of lines as I joked with the girls that my memory was bad, not realising that it was. Sometimes I would have repeated myself, or held onto the banister as I walked down the stairs as my balance wasn't great. I still carried on going to school, trying to not let my symptoms beat me as I used up all my energy to smile and carry on. There were moments when I got into the car and collapsed with exhaustion as the pain was horrendous.
After a year of feeling unwell I finally had a diagnosis. It was on the last day of junior school, my dad bought me to the optician who diagnosed me with papilldema, swelling of the optic discs. I was then referred to a neuro-opthalmologist and had an MRI scan of my brain, I was diagnosed with a brain tumour on top of my brain stem and hydrocephalus, water on the brain. I call my brain tumour, Annie the astrocytoma, and hydrocephalus, Heidi hydrocephalus. I thought if they are going to be around for a while or forever, I might as well give them a better name which are much easier to pronounce.
I was frightened when I was told I would be having emergency brain surgery. I never liked scary movies or hospital programmes, but here I was without a choice going into surgery to correct the fluid on my brain. I won’t go into the details of the operation, but needless to say it was a shock to learn how to walk again. I was relieved to find out why I had been feeling so poorly, and I suppose my timing was good as the initial surgery took place during the summer holidays.
I’ve had many operations for my hydrocephalus, too many I’ve lost count, but I’m sure it’s over twenty by now. The majority of these operations took place while I was studying for my GCSE’s. I remember having emergency surgery one day, and sitting my maths exam a couple of days after I was discharged from hospital. If I wasn’t having surgery I was attending one of the nine specialists for appointments, scans and tests. Despite the surgery, I had to have more time off school because I wasn’t getting much better. In my final year of GCSE’s I would have gone into school for a few hours a week, and the teachers would send work home for me for the classes I missed. I felt that it was important to keep going, not only to attend some classes, but to meet up with friends and try and keep life as normal as possible. I needed to set myself a challenge and have something to focus on, otherwise I may as well have given up which was not an option. I was realistic and thought about how many GCSE’s I could manage, so I dropped a couple of subjects. I’m not saying I was pleased to be dropping subjects or it was an easy decision, but I had to be realistic. I thought if I could get my GCSE’s then it would be easier to move on to the next step of my education. I was delighted that I passed six of them. It was important for me to feel that I had achieved what everyone else was achieving, and that the last two years were not consumed by hospital appointments and operations.
Lower sixth came and once again I had just spent my summer holiday in hospital. In fact, the last four summer holidays have been spent in hospital, so I’ve given each of them a name during the summer period, Costa del Royal, Costa del Frenchay and Costa del Southmead.
I thought that surgery had finished and I was delighted to start my A-Levels, but unfortunately Annie my brain tumour had other ideas and became active. Sadly this meant I had to move to England for 6 weeks of radiotherapy over the Christmas period. I am pleased to say that Annie is behaving herself and has shrunk by 2mm. I wanted to carry on studying but I decided that after 20 operations and now radiotherapy, maybe I needed to have a break. It was the best decision I made as it allowed me to concentrate on my health, and decide on how I was going to carry on with my education. Despite the wonderful support the school has given me throughout my time here, I knew I would be better suited to attend college, as it allows me to study from home on the days that I can’t attend through online learning.
When I was first diagnosed with my brain tumour, I was devastated to find out how little cancer research funding is spent on brain tumours in the UK, currently less than 2%, yet it’s the biggest cancer killer of children and adults under 40. I wanted to help change this, so I set up a Supporter Group with a charity called, The Brain Tumour Charity. There have been many events held in aid of my Fund with The Charity, so I would like to take this opportunity to thank you all for supporting the fundraising that has taken place at Hunterhouse College.
After radiotherapy in Bristol and knowing I wasn't going back to school for the year, I needed a focus and used this opportunity as a somewhat gap year. This was when my fundraising and awareness raising of brain tumours was my complete focus. To date I’ve raised over £100,000.00 for research into brain tumours. I have learnt so much in the business sense about PR and the positive use of Facebook and Twitter, as well as running a charity. I have been interviewed on UTV Live and have had articles written about me in the Belfast Telegraph. I have been invited to speak at Stormont and have worked with the Public Health Authority on their cancer awareness campaign. I also write a blog called, Danielle’s Journey, which follows my journey from my biopsy in June 2013. I am now studying a BTech in Business at College, which I’m enjoying very much.
Looking back I can honestly say that I am not consumed by all the horrible surgeries and sickness. I look back and know that my diagnosis has helped me to become stronger, independent and optimistic. I have had some amazing opportunities and I have met some incredible people, some who are celebrities but most who have been going through similar journeys. Annie and Heidi are behaving themselves and I am trying to deal with any symptoms without them stopping me from achieving my goals.
I know I’m only 18 but I want to share with you lessons I have learnt throughout my journey.
Number 1) Just by sending someone a text asking how they are, or a smiley face on “Snap Chat” can really brighten their day, I know it did for me when I couldn’t see my friends as much as I would have liked.
Number 2) Throughout our lives we will all come up against challenges, however big or small it will be a testing time. Don’t give up and think there are no solutions or other options. Set yourself personal goals and take one day at a time to achieve them.
Number 3) Don’t hide behind what’s holding you back and look at opportunities to turn a difficult situation into a positive one.
Number 4) Get involved in school activities, charity work and whatever else as these are important life experiences for when you leave school.
Number 5) Remember that there are always other options to achieve your dreams and goals, we aren’t all the same, so be individual.
Finally, my motto which I share on my social media is, #StayStrongKeepPositiveAlways.
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.
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.
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.
I had a lot of time to think when I was in Bristol, about what I want to do now that I'm not at school until September. I don't want to sit around all day thinking about what I could be doing, I want to put my thoughts and ideas into action. I like to try and plan what I'm going to do each day and week, so that time doesn't run away and I soon realise that I've not completed anything while I'm off. I've always enjoyed cooking and took Home Economics as one of my GCSE subjects last year. I've been cooking some meals and treats for my family and I to enjoy, such as; Leak and Potato Soup, Fish Pie, Italian Macaroni, Extra Spicy Bolognese and Lemon Drizzle Cake with Poppy Seeds.
I've always enjoyed working with young children. When I was in Primary School, one of my really good friends Orlagh and I use to help out at break and lunch times, to look after the Primary 2's when we were in Primary 7. We were recognised for this and each presented with a certificate at our year's end of school ceremony. I told my CLIC Sargent Social Worker about this and he has arranged for me to volunteer at the new CLIC Sargent Home From Home in Northern Ireland. I'll be volunteering by doing arts and crafts with children who will be at the house when required. I'm really looking forward to it, as I know when I stayed at a CLIC Sargent house in Bristol, the days can sometimes drag in and become a bit boring. It may not seem a lot, but it's enough for me at this time.
Of course I'm continuing with my fundraising and awareness raising of brain tumours, with my Fund with The Brain Tumour Charity called, The Danielle McGriskin Fund. There are amazing fundraising events coming up, so head over to my Facebook and/or Twitter page to find out more (and please give it a "like" or "follow"). While I'm off I want to do some activities for me and take some "me time". One of the things I've done is to start reading books again (not that I haven't read a book in a long time, but to start a book that I enjoy reading and finish it and also not having to read a book for school exams). I heard through Facebook about a book called, "The Fault in Our Stars". I read it in six days, which for me is very quick as I can be a bit of a slow reader. Some say that it takes the first chapter of a book before you get into it, but with this book I loved it after reading the first page. The Fault in Our Stars is a sad story, but it will also make you smile.
As I am a The Diana Award Holder (I was awarded with the Courageous Citizen award in March 2013), I've been selected out of 1000s of other The Diana Award holders to join 120 of them at the National WE Day. It's the first time this event is coming to the UK and will be held in London this March. The conference is bringing young people together who have made a difference in their communities. The event will be attended by renowned guests who will take part in WE Day; including Sir Richard Branson, former U.S Vice President Al Gore, Ellie Goulding, actor Clive Owen, Malala Yousafzai (whose book I am currently reading), and other high profile inspirational people. I am honoured and excited beyond words to be attending this event, it will be one I will never forget. This summer I've been invited to go on a sailing trip with The Ellen MacArthur Cancer Trust through CLIC Sargent in Northern Ireland; I'm really looking forward to this as I've never been sailing before, so it will be a new and exciting experience (I just hope that my operation to have my shunt taken out doesn't happen around the same time as the sailing trip, and that I am well enough, fingers and toes crossed).
I had my hair cut for the first time since radiotherapy a few weeks ago. I know a hair cut is something that many people have done regularly, but for me it was nice to get my hair done as I've got quite a few bald patches, thinning spots and short spiky bits from radiotherapy and numerous brain surgeries. I've become use to neurosurgeons saying, "now we are going to have to shave some of your hair off", before the operation takes place. I remember the very first operation I had which was for my hydrocephalus in July 2011. I was really worried about how much hair was going to be shaved, but in the end my surgeon was a good hairdresser and shaved it very carefully so it was easy to cover up. Now because of scars and hair loss, I'm finding it harder to cover up the bald patches and thinning spots.
It's been a roller coaster of a journey, like sporadic heart beats with feelings of highs and lows throughout. It definitely hasn't been easy. Living with my initial symptoms before I was diagnosed was frustrating that the Doctors wouldn't listen to me after months and months of going back and forth to see doctors and telling them about my symptoms, for it to be put down to stress, migraine and just being a teenager. I even saw a neurologist privately who said I was just stressed and it's just a migraine. Eventually, my Dad took me to his optician, who diagnosed me with having papilledema (swelling of the optic discs) and referred me to a neuro-opthalmologist. That's when the second stage of my journey began. I remember when I was first diagnosed not knowing how to spell words such as tumour, I thought it was spelt like, "chew-more" or "tomore" (I guess if you pronounce it the way I thought it was spelt it sounds right). As it took a year until I was diagnosed and I ended up with chronic hydrocephalus (water on the brain), which in itself has left me with some medical problems, I am determined now to raise awareness of the symptoms of brain tumours in children and young people. A way in which I can do this is through The Brain Tumour Charity's awareness campaign called, HeadSmart: Be Brain Tumour Aware. I've had a few primary and secondary schools who've become involved with this campaign by distributing symptom cards, including my primary and secondary school, but I am looking at other ways of getting the cards distributed throughout schools in Northern Ireland.
Thankfully that horrible metal funny kind of taste I had in my mouth which I think was from radiotherapy has now disappeared. I started another lot of steroids a couple of weeks ago as my symptoms have returned. I'm now on a reduced dose of steroids, but over the last week since they have been reduced my symptoms have become worse again and this is a real setback and I don't know why at the moment. Maybe I need to carry on with steroids for another while or maybe it will get better soon. I will contact my oncologist in Bristol if it doesn't improve.
My list I'm making about the things that can be done with a radiotherapy mask is progressing very well. I've called it, "101 Things To Do With A Radiotherapy Mask". I've got around 50 ideas thanks to supporters on my charity Facebook and Twitter pages. I'll try and get to 101 and then post the list on my blog for you to have a read of all the wonderful, creative, silly and brilliant ideas.
