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