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
