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

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"

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

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.

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

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

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

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

Friday, 21 March 2014

Happy St Patrick's Day

I haven't been very well at all over the last few weeks and I'm still not feeling as good as what I was when I came home from Bristol after radiotherapy. I was doing so well since my ETV operation (the operation I had in Bristol for my hydrocephalus, just before I started IMRT radiotherapy). I thought I was feeling more symptomatic because my steroids had been reduced and my brain could still be swollen from the IMRT radiotherapy. After two weeks of not feeling well I suddenly went down hill quite badly. I woke up one night with fever like symptoms, I was shaking, freezing cold and was physically sick too. The side of my neck where my shunt is, that is now tied off, was extremely sore and swollen. I also had sharp pains in my tummy which I've never had before. The next morning my Mum brought me to A&E which is the last place I wanted to go to. It turns out I was running a very high temperature, my bloods were abnormal and my white blood cell count was also high, all signs of an infection. When I was in A&E the medics began a course of antibiotics and I had a CT scan of my brain incase I had hydrocephalus again. After I had one or two doses of antibiotics the course was stopped, as the neurosurgery team wanted to find out what they were treating before they treated it. I was kept in hospital for three nights under observation and I had more blood tests as well as having my CSF (brain fluid) checked. After a few days my bloods went back to normal which was fantastic, and there were no abnormalities in my CSF. I was discharged from hospital and a few days later I had an ultrasound scan of my abdomen as an outpatient, to check if there were any abnormalities around the outside of my shunt. The ultrasound scan came back clear, which is also very good. Unfortunately this means we don't know why I was feeling the way I was feeling, it's a bit of a mystery really. My headaches and pain around my eyes are still very bad, but my neck isn't given me much trouble anymore. Hopefully this isn't the beginning of my hydrocephalus coming back ever so slowly and was just a blip.

Unfortunately, I missed the event in London called, WE Day. I was so disappointed I wasn't able to go because I was in hospital. I was hoping the Doctors would discharge me early or I could take a private jet to London (well I knew that wasn't going to happen). I also planned to see Beyoncé live in concert and luckily I got out of hospital the day before to see her perform in Dublin, which my friend and I got tickets for last Christmas. The concert was absolutely amazing and although I was exhausted and in pain, it was brilliant to be able to go and enjoy the concert. My Mum was a 'Super Mum' as always and drove my friend and I the whole way to Dublin and back again. I've wanted to see Beyoncé since I was ten or eleven, so I was over joyed to have made it. The journey and evening took a lot out of me, but I know if I don't push myself even when I am feeling unwell, then I will never do anything and life will just past by. For me, I believe it is better to plan things ahead and have something to look forward to, because there are so many days which are tough that it's easy to do nothing, even though sometimes I can't make those plans.

A huge congratulations goes to my younger (15 yrs old) sister, Rebecca. Rebecca was awarded an honours in her recent modern dance exams. I am very proud of her for achieving this with everything that has been going on with my health. I use to enjoy dancing and did it for many years, until I had to start doing acrobats (well roly-poly's).

My hair where patches have fallen out from IMRT radiotherapy is growing back! I'm very pleased as I was beginning to think it wouldn't. I have a huge charity ball to look forward to in May and I can't wait to have my hair done for it. I'm not sure what hair style I'm going to have for the ball just yet, I better start looking at hair style magazines for ideas.

I hope you had a lovely St Patrick's Day and some great "craic". My family and I visited family and friends in Fermanagh over the weekend. We went to my Aunty and Uncle's house for a delicious Sunday dinner, I felt like I was rolling my way home.

Since I began writing this blog post, I have been getting worsening symptoms again. The CT scan which I had while I was in A&E in Belfast a few weeks ago has been sent to Bristol, so that they can compare it with their recent scan, taken when I was in Bristol after having the ETV operation. I'm not sure how long it will take for the Doctors to get the scan (as it is sent by post), but hopefully I will hear something next week. I am trying to keep positive, although this can be hard, remembering that not long ago I was feeling amazingly well, the best I've felt since my first symptoms of having a brain tumour and hydrocephalus, over two years ago. Hopefully this is a small blip and I will be feeling a lot better again soon. Having a slow growing low grade brain tumour and hydrocephalus, I am beginning to realise that this is a long term chronic condition, as explained by my Doctor in Bristol. I will have good days and bad (hopefully more good than bad). I'm not going to let this stop me from doing anything that I wouldn't already want to do in life. I may not be able to do the things I want to do now, but I can look forward to it in the future. I've got too many countries to visit, personal goals to achieve and other adventures I want to see and do. As my motto goes, "Stay Strong, Keep Positive... Always".

Danielle X

Wednesday, 19 February 2014

Where Do I Go From Here

I had a lot of time to think when I was in Bristol, about what I want to do now that I'm not at school until September. I don't want to sit around all day thinking about what I could be doing, I want to put my thoughts and ideas into action. I like to try and plan what I'm going to do each day and week, so that time doesn't run away and I soon realise that I've not completed anything while I'm off. I've always enjoyed cooking and took Home Economics as one of my GCSE subjects last year. I've been cooking some meals and treats for my family and I to enjoy, such as; Leak and Potato Soup, Fish Pie, Italian Macaroni, Extra Spicy Bolognese and Lemon Drizzle Cake with Poppy Seeds.

I've always enjoyed working with young children. When I was in Primary School, one of my really good friends Orlagh and I use to help out at break and lunch times, to look after the Primary 2's when we were in Primary 7. We were recognised for this and each presented with a certificate at our year's end of school ceremony. I told my CLIC Sargent Social Worker about this and he has arranged for me to volunteer at the new CLIC Sargent Home From Home in Northern Ireland. I'll be volunteering by doing arts and crafts with children who will be at the house when required. I'm really looking forward to it, as I know when I stayed at a CLIC Sargent house in Bristol, the days can sometimes drag in and become a bit boring. It may not seem a lot, but it's enough for me at this time.

Of course I'm continuing with my fundraising and awareness raising of brain tumours, with my Fund with The Brain Tumour Charity called, The Danielle McGriskin Fund. There are amazing fundraising events coming up, so head over to my Facebook and/or Twitter page to find out more (and please give it a "like" or "follow"). While I'm off I want to do some activities for me and take some "me time". One of the things I've done is to start reading books again (not that I haven't read a book in a long time, but to start a book that I enjoy reading and finish it and also not having to read a book for school exams). I heard through Facebook about a book called, "The Fault in Our Stars". I read it in six days, which for me is very quick as I can be a bit of a slow reader. Some say that it takes the first chapter of a book before you get into it, but with this book I loved it after reading the first page. The Fault in Our Stars is a sad story, but it will also make you smile.

As I am a The Diana Award Holder (I was awarded with the Courageous Citizen award in March 2013), I've been selected out of 1000s of other The Diana Award holders to join 120 of them at the National WE Day. It's the first time this event is coming to the UK and will be held in London this March. The conference is bringing young people together who have made a difference in their communities. The event will be attended by renowned guests who will take part in WE Day; including Sir Richard Branson, former U.S Vice President Al Gore, Ellie Goulding, actor Clive Owen, Malala Yousafzai (whose book I am currently reading), and other high profile inspirational people. I am honoured and excited beyond words to be attending this event, it will be one I will never forget. This summer I've been invited to go on a sailing trip with The Ellen MacArthur Cancer Trust through CLIC Sargent in Northern Ireland; I'm really looking forward to this as I've never been sailing before, so it will be a new and exciting experience (I just hope that my operation to have my shunt taken out doesn't happen around the same time as the sailing trip, and that I am well enough, fingers and toes crossed).

I had my hair cut for the first time since radiotherapy a few weeks ago. I know a hair cut is something that many people have done regularly, but for me it was nice to get my hair done as I've got quite a few bald patches, thinning spots and short spiky bits from radiotherapy and numerous brain surgeries. I've become use to neurosurgeons saying, "now we are going to have to shave some of your hair off", before the operation takes place. I remember the very first operation I had which was for my hydrocephalus in July 2011. I was really worried about how much hair was going to be shaved, but in the end my surgeon was a good hairdresser and shaved it very carefully so it was easy to cover up. Now because of scars and hair loss, I'm finding it harder to cover up the bald patches and thinning spots.

It's been a roller coaster of a journey, like sporadic heart beats with feelings of highs and lows throughout. It definitely hasn't been easy. Living with my initial symptoms before I was diagnosed was frustrating that the Doctors wouldn't listen to me after months and months of going back and forth to see doctors and telling them about my symptoms, for it to be put down to stress, migraine and just being a teenager. I even saw a neurologist privately who said I was just stressed and it's just a migraine. Eventually, my Dad took me to his optician, who diagnosed me with having papilledema (swelling of the optic discs) and referred me to a neuro-opthalmologist. That's when the second stage of my journey began. I remember when I was first diagnosed not knowing how to spell words such as tumour, I thought it was spelt like, "chew-more" or "tomore" (I guess if you pronounce it the way I thought it was spelt it sounds right). As it took a year until I was diagnosed and I ended up with chronic hydrocephalus (water on the brain), which in itself has left me with some medical problems, I am determined now to raise awareness of the symptoms of brain tumours in children and young people. A way in which I can do this is through The Brain Tumour Charity's awareness campaign called, HeadSmart: Be Brain Tumour Aware. I've had a few primary and secondary schools who've become involved with this campaign by distributing symptom cards, including my primary and secondary school, but I am looking at other ways of getting the cards distributed throughout schools in Northern Ireland.

Thankfully that horrible metal funny kind of taste I had in my mouth which I think was from radiotherapy has now disappeared. I started another lot of steroids a couple of weeks ago as my symptoms have returned. I'm now on a reduced dose of steroids, but over the last week since they have been reduced my symptoms have become worse again and this is a real setback and I don't know why at the moment. Maybe I need to carry on with steroids for another while or maybe it will get better soon. I will contact my oncologist in Bristol if it doesn't improve.

My list I'm making about the things that can be done with a radiotherapy mask is progressing very well. I've called it, "101 Things To Do With A Radiotherapy Mask". I've got around 50 ideas thanks to supporters on my charity Facebook and Twitter pages. I'll try and get to 101 and then post the list on my blog for you to have a read of all the wonderful, creative, silly and brilliant ideas.

Danielle X

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Tuesday, 21 January 2014

I'm Home

It's really nice being home, in my own bed, surrounded by my family and friends, and of course my pug called Harry who I missed ever so much. After our very long and tiring journey by car from Bristol to Belfast, it was lovely to be home. As someone told me, "you know you're home when you've got a packet of Tayto crisps and a cup of Nambarrie tea".

Our journey to N. Ireland was very long (actually, it was very very long). It took Mum and I twelve hours before we arrived home. We set off on our journey on Saturday (11/01/2014) from CLIC House. Our car was packed ever so tightly with all our things. We were bringing more home with us than when we came over to Bristol, and the car was already tightly packed then. From CLIC House, we drove to Holyhead (in Wales not England, remembered that from when Mum and I were traveling to Bristol), then from Holyhead we took the ferry to Dublin and then from Dublin we drove to our home in N. Ireland. The ferry was the longest part of the journey, but it felt the quickest. Unlike when we were traveling to Bristol, this time we travelled on a bigger ferry (as the weather had been very bad all week and we didn't want to risk it) which had cabins on board. Mum and I booked a cabin, so I slept the whole journey and the time just 'sailed' by. 

On the Thursday of the week we left to go home, I met with my wonderful neurosurgeon at Frenchay Hospital, Bristol. This appointment was my post op review appointment since having the ETV operation, only a couple of weeks before I started IMRT radiotherapy. The operation was carried out by another wonderful surgeon in Frenchay, who was on call the day I was admitted into hospital with hydrocephalus. My neurosurgeon said that my eyes looked so much brighter and not so 'sticky out' as I would say. I was very eager to find out if I could have my horrible shunt taken out, as it's been tied off so it doesn't work anymore and the ETV is doing all the work. My neurosurgeon said that I could have my shunt taken out. This was the best Christmas present ever, although I have to wait until the summer to let everything settle down from the radiotherapy. The operation, although very easy, will be carried out in Bristol. I'm sure my family and I, or if it will just be my Mum and I who go over, will explore parts of Bristol we didn't get to visit the last few times we've been.

The day after my appointment with my neurosurgeon, I met with my oncologist, like I did every Friday. My oncologist was pleased with how I was doing, although I had to start steroids on the Tuesday as my symptoms from radiotherapy were very bad. I was suffering from severe headache, eye pain and pain down the right hand side of my face. These symptoms aren't new, they just increased due to immediate side effects of radiotherapy. I was taking a bigger dose of steroids than what I've previously been on, which really helped.

The weekend before I came home and that week, I was not sleeping properly. I found it so hard to get to sleep, partly because of the steroids as they affect my sleep pattern, and partly because I was just too excited to get home.  

On Tuesday 7th January 2014, my lovely oncologist arranged for me to do a couple of hours of work experience in the radiotherapy department, as I had told her that I was interested in becoming a therapeutic radiographer. It was very interesting, finding out about the job and whats involved. I didn't realise how many people took part in planning and organising a patients treatment plan. I also didn't realise how big the radiotherapy department was, as you only see the waiting area and room where you're given the radiotherapy. I found the planning of a patient's treatment really interesting, as well as actually giving the patient radiotherapy. I've also thought about doing psychology or being a social worker with children and young people with cancer as a career. I enjoyed talking with the other children at the CLIC Sargent house and helped them do some arts and crafts. I'm still not sure which career I would like to do just yet, but whilst I'm not at school for the rest of the school year, I plan to find out more about them.

I finished six weeks of IMRT radiotherapy on Thursday 9th January 2013. The last week of treatment felt the longest, but the rest of the time it went really fast. As I'd finished radiotherapy I got to take my mask home with me, as each mask is made individually for each patient and can't be used again. The reason why I had to wear a mask for radiotherapy, was to keep my head in place during treatment and the mask has markings on it so that the radiographers knew where to position each beam. There were a total of five beams targeting my tumour. I've been thinking of writing a blog post about all the things that can be done with a radiotherapy mask, such as, using it as a Halloween costume, flower pot and more.

My IMRT radiotherapy mask.

I have an MRI scan of my brain scheduled for April 2014. This scan will hopefully show that my tumour is behaving itself (you hear that Annie, behave). The IMRT radiotherapy I had is to delay the growth of my tumour for a few more years than if it was left untreated. The radiotherapy won't get rid of my tumour completely, but hopefully will reduce its size and density so that some of my vision problems and pain associated with my eyes will ease. The radiotherapy will also give me more time before my tumour decides to grow again, but we're hoping it won't.

Since I was diagnosed with Annie (brain tumour) and Heidi (hydrocephalus) (5th July 2011), I haven't been able to exercise properly, until now. On Sunday my family and I went for a short walk together with my pug, Harry. I loved it so much, just doing something 'normal' felt so good. Since having the ETV operation (the operation I had a couple of weeks just before radiotherapy) and radiotherapy, I still have a constant headache, vision problems and sore eyes, but it's now a lot more manageable.

A walk with my family and Harry (pug) at
The Argory, Co. Armagh.

Over the last few days I've been feeling quite 'radioactive'. It's very strange, I have a funny taste in my mouth which tastes like metal and tin and is quite unpleasant. One day I felt like an explosion went off inside me full of 'radioactivityness' (the only word I can think of to describe it). It must be from where the excess radiotherapy is trying to get out of my system, although the radiotherapy will always be inside me. I'm not quite sure really why this has been happening, but that was: "Danielle's Theory Of Why She Has A Metal Taste In Her Mouth And Felt Like An Explosion Went Off Inside Her Since Having IMRT Radiotherapy". My hair hasn't been falling out as much since I've finished radiotherapy, it's a lot thinner than what it was before I began treatment, as I have a few bald patches and thinning spots. I'm lucky to have had very thick hair, as you really wouldn't know if you didn't know me. I must say, I quite like the thickness that it is now, as it's a lot easier to wash, dry and style.

Watch out for my next post about, 'Where Do I Go From Here'; all I know is I'm not going to be dwelling on the past, but looking forward to the future. #StayStrongKeepPositiveAlways

Danielle X

Sunday, 5 January 2014

"Merry CLICmas"

My family and I had a wonderful Christmas. Despite being away from home and missing Harry our pug very much, not forgetting our cat, Rosie and two fish, Susy and Spotty. Sadly my other two fish died, Pop-Eye and Pebbles (I was home when Pop-Eye died and got Dad to bury him in the garden. My sister wasn't so kind and while I've been in Bristol, Pebbles died which she flushed down the loo).

Just before Christmas my anti-sickness medicine was changed. The original one was no longer working as well, or for as long since I started radiotherapy. I'm now on a new anti-sickness medicine called, domperidone (just incase you were wondering). The new anti-sickness medicine works so quickly and lasts a lot longer. In fact, I took some just before I started writing this blog post, as I was feeling a bit nauseous and it's already helped.

If you live in the west side of England, you may have seen that my Mum and I were featured in the video clip about CLIC Sargent being one of the six charities chosen to be part of Text Santa last year. My Mum and I were asked on the morning of the recording, if we would mind taking part in the video. We both agreed to do it, as CLIC have been a huge part of my journey, in N. Ireland as well as Bristol. We both quickly dashed around our room at CLIC House, shoving on some clothes, brushing our hair and only having enough time to put a little bit of make-up on. It was lovely to be apart of it, as CLIC Sargent are an amazing charity and offer amazing support to children and families.

On 21/12/2013, my Dad and sister, Rebecca came over from N. Ireland to stay with my Mum and I at the CLIC Sargent house during the Christmas period. My Granny and Uncle also came on the same date from Lincolnshire, to stay for the weekend. While my Granny and Uncle were over, we went to Bristol's German Christmas Market on the Saturday. On Sunday we went to The Town House in Bristol for Sunday Lunch. It was really nice to see my family and be together.

My sister, Rebecca and I at
Bristol's Gerrnan Christmas Market.

On Christmas Eve I had radiotherapy at 8:15 in the morning (I know very early indeed). It was an early start but I was glad to have my treatment over and done with. That evening my Mum, Dad, sister and I went to the cinema and out for dinner too. This has been a family tradition of ours since I can remember. We always see a kids Christmas movie, this year it was Frozen. I thought it was a brilliant film and it's a bit like a musical.

Today Is Day 22 Of IMRT Radiotherapy. 

On Christmas Day, my family and I opened our presents and had breakfast at CLIC House. My sister and I loved all our presents. Every year my sister and I get a board game (another tradition of ours), this year it was electronic Monopoly, my favourite. My sister and I also got a charm each for our charm bracelets. Both of our charms have each others finger print and name on them. We love them very much and Mum got them for us from Button and Bean. We were very lucky to be treated to Christmas dinner and an over night stay at the local Marriott Hotel, by my very kind and generous Granny. The Christmas dinner was delicious, we were stuffed afterwards. On Boxing Day we had afternoon tea at the hotel. It was also very delicious, with different sandwiches, tea (I had Earl Grey, my favourite), scones and deserts. We definitely didn't go hungry over Christmas.

Mine and my sisters
fingerprint charms.

Over the Christmas holidays, my family and I went to London for a night stay. Thank you to Samuel's Children Charity for organising this. We had such a brilliant time, even though it was only for a very short time it was nice to get away. I've always wanted to go to a LUSH Spa, but there aren't any in N. Ireland, only a handful in England. Samuel's Children Charity treated my Mum and I to a beauty treatment each at a LUSH Spa in London. I had a facial and my Mum had a foot massage. We both enjoyed our treatments and were very relaxed after. The next day my Dad, sister and I went to see the Chelsea v Liverpool match. My Dad loves Chelsea, so my Mum got him tickets to see them play for his Christmas present. When he opened the envelope, I wrote a note to say that he had got the tickets. He thought it was a joke at first, but my Mum and I explained that we had to pick the tickets up from the Chelsea stadium. Dad was so excited it was brilliant to see his surprised face.

My sister, Dad and I at the
Chelsea v Liverpool match.

For New Years we set off again after my radiotherapy in the morning, visiting friends in Northampton. It was so nice to them, as we hadn't seen each other in a while. We went to our friends sisters house for New Years Eve which was lovely. I was very tired, but I got New Years Day off to rest up. While in Northamptom, my Uncle and cousin, Sarah, traveled over to join us for lunch on New Years Day. It was great to see my cousin, she has grown so much since we last saw her over the summer holidays. My family and I travelled back to Bristol from Northampton on 02/01/2014, as I had radiotherapy that day. We had been doing a lot of travelling and going to different places over the Christmas period, which has been great because although its been hard because of the side effects of treatment, it has meant that the time has gone quickly and I will be able to remember lots of good times also. 

Suzanne Shaw, a patron of The Brain Tumour Charity, organised for my family and I to watch her perform in the pantomime, Cinderella at the Hippodrome, Bristol. Suzanne and all the actors, actresses and dancers, performed very well. Suzanne invited my family and I to meet her back stage, once the show was over. It was so nice to meet her and thank her in person for organising this treat for us,  I also got to meet her cutie pie puppy. Another family tradition of ours it to go to the pantomime during the Christmas period, so I really appreciated this treat.

Suzanne Shaw (wearing a #TeamDanielle wristband)
with her puppy and I.

Due to the side effects of radiotherapy, my ears have been very sore recently, as well as my right eye and down the right hand side of my face. I've also been feeling nauseous and tired too. Before I started radiotherapy I would always have sore eyes and pain on my face, so this was nothing new, although it has been particularly bad yesterday and today. I met with my oncologists on Friday, as I do every Friday. I was told that the worst weeks of symptoms will be my last week of treatment (this coming Monday) and the week after treatment is finished. I have four more fractions (sessions) to go of radiotherapy and an appointment with my oncologist on Friday, then I'm finished and back home to N. Ireland on Saturday. I can't wait to get home and see all my family and friends.

This coming week I'm meeting with my neurosurgeon in Bristol, for a follow up appointment since having the ETV operation a couple of weeks before I started IMRT radiotherapy. I'm hoping if the ETV is working (which I think it is) I can get my shunt taken out sometime. I've never liked the idea of having a shunt, a long tube running from my head to my abdomen doesn't sound nice at all. When it was working (which it doesn't anymore as it's been tied off, so the ETV can do all the work), it makes funny noises like a bicycle chain spinning around when you cycle down a hill without peddling. I can also feel the shunt through my skin behind my ear and on top of my head, which is so unpleasant.

My hair is thinning and itchy due to radiotherapy and there's a few bald patches too. Luckily you can't see any of this as my hair was really thick before, all you can see is some spiky bits of hair from where I've had my brain operations for my hydrocephalus. The good thing about it being thinner, is that it's so much easier to handle than when it was thick, such as drying my hair is a lot quicker.

My hair from radiotherapy.

Danielle X