Back in the Saddle

I know, I have been a terrible blogger. I've not blogged in around five months, and I didn't even finish telling you about my sailing adventure with The Ellen MacArthur Cancer Trust over the summer. But I'm back now, to give a quick update on how I am health wise, about my college life, and life in general.

If you follow me on my Facebook and Twitter pages, then you'll know the fantastic news that I received in late October. After flying to Bristol for my yearly MRI scan of my brain, I met with my wonderful oncologist the next day, who told me that my tumour is stable. Honestly, when I first received the news I was a bit worried. I was thinking about how my tumour had shrunk by 2mm, then 1mm, and now it is stable which means it's neither shrunk nor grown. I was worried because I was thinking what if it doesn't shrink anymore, or what if it begins to grow, as the radiotherapy I had for six weeks over 2013/2014 has done everything that it can do. After having time to think, I feel much more confident as I'm looking on the positive side, than when I first received my results.

My health in general has been much better in comparison to how I was this time last year. Like I always say, I need to plan my days and weeks, and balance my college life with my social life. If I don't, then it's a downward spiral. Action Cancer has been extremely kind to me. I began having acupuncture with the charity around this time last year. They have allowed me to continue receiving the alternative treatment with them, as I find it really helps me to manage my chronic fatigue. Thank you to another wonderful charity for their great support.

I thoroughly enjoy college. I love everything about it from the course, to seeing my friends. I'm doing a BTEC Level 3 Extended Diploma in Business, which is equivalent to three and a half A-Levels. The work isn't easy, but because it's all coursework and not exams which involves using your memory, my wee brain is able to manage brilliantly (GO BRAIN!). I'm into my second and final year of the course. My overall result for my first year was Distinction* Distinction* (D*D*). I have applied to and hope to go to University next year to do one of the following, Business Management, Business Studies, Marketing, Human Resource Management, or Human Resource Management and Marketing. I want to stay in Northern Ireland, but move out of my family home. Due to my health, it means I know if I'm having a bad period I can always go home and rest up well, but still have the independence of living away at the same time.

I have reached another big milestone in my life, as many other people have too. I passed my driving test last Saturday with one out of a total of fifteen minors! This was another big achievement in my life, after having to wait a year before I could receive my provisional license as I had radiotherapy, while hoping at the same time that I would be allowed to drive, I am now officially on the roads.

I am one of eleven Young Ambassadors for The Brain Tumour Charity. Sadly one of our fellow Young Ambassador and friend, passed away last week from her brain tumour. She fought her hardest, with strength and courage. I only got to meet her once at our first Young Ambassador meet up, but she will be remembered for being kind, funny, and inspiring to all. I have lost two other friends who both passed away from cancer this year. I met Ellie and Jessica at CLIC Sargent's Home from Home in Bristol while I received radiotherapy. We were staying there at the same time, and due to our circumstances I grew close to both of them. Ellie's family and mine even shared Christmas together at the Home from Home.

Over this Christmas period I will be thinking of families and friends who have lost their loved ones.


Danielle X

Sailing the Seas

I have not blogged in quite some time, therefore as to not overload you with letters upon letters, words upon words, and paragraphs upon paragraphs, I'm going to write snippets of the events I would like to share with you until you're all up-to-date.

Going back to around Friday 15th May 2015 my mum invited me along to an event with Mindfulness Belfast held in the Crescent Art Centre, Belfast. It was a Zen and Poetry Workshop which was held by Paul Haller, a Belfast man who left in the early 1970s, and after some travelling in the East he engaged with and developed a Buddhist practice. I had never been to anything like this before, so it was a whole new experience. I was intrigued to find out more about it, as I like learning about different cultures. When I was eight years old my family and I travelled to Thailand to visit my Grandad who moved from England to live there. I remember visiting the temples located up in the green hills of Chiang Mai. It was a beautiful, peaceful place, with gold detailing on the buildings and statues of Buddhas too. My mum and I joined the workshop in the afternoon when special guest Naomi Shihab Nye who is an American poet lead the poetry workshop. Naomi shared some of her poems with us, and told us stories from her life too. Ever since I was old enough to read I loved poems, I had a large bright orange book full of poems for children with cartoon illustrations. I would read the poems over and over again, and I use to trace the illustrations too as I loved art.

I have finally finished my first year of college! I submitted my last assignment for my course last Friday, which is a BTEC Level 3 in Business Management. I was allowed extra time to complete all my assignments, but now I can finally say I've finished year one out of the two year course (hence why I've not blogged in a very longtime).

This summer is the first summer since 2011 that I will not be spending it in hospital! It feels so good that I will be finally having a hospital free summer (yay). Next week I will be sailing for the first time ever across the seven seas (well, not exactly the seven seas, but to Scotland, which I'm extremely excited about). I have treated myself to some new clothes (obviously they were necessary for the sailing trip). I bought myself some nautical themed pyjamas (very essential when going sailing of course); a nautical themed backpack (also very essential when going on a sailing trip), and a few other bits and pieces.


Danielle X

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

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