Tuesday, 17 December 2013

''Holidays Are Coming''

I can't believe I'm half way through treatment already (on Monday just gone). I'm sure that the last three weeks will go just as quickly as the first, as Christmas this year is surprisingly busy for my family and I, even though we're away from home. We've planned a short trip away, visiting family friends, my Granny and Uncle are coming to see us this weekend from England and also, my sister, Rebecca and Dad are coming over from N. Ireland to stay for two weeks over the Christmas holidays. I can't wait to see them both, as it feels like I've not seen them in months, and FaceTime just isn't the same.

Last Monday after I finished radiotherapy that evening, Mum and I went to Jamie's Italian in Bristol. My family and I have been to this restaurant of Jamie Oliver's before, when I was in Bristol over the summer for the biopsy of my tumour. We loved it so much and the food was so tasty that Mum and I just had to go back. Mum had fish, which was served with it's eyeballs and everything (I love fish, just not with eyeballs) and I had a very tasty carbonara (with no eyeballs).

I asked two girls who were also staying at CLIC House, Zena (4) and Chloe (15), if they would like to have a movie night with me. Zena chose the movie which was The Santa Clause 3, one of my favourite Christmas films. Zena was so excited to watch it and was chatting away trying to find out what would happen at the end, although, she never got to see the end as she fell asleep during the film.

Zena and I at the Zoo.

I've been feeling very nauseous, last week and this week especially, due to the side effects of IMRT radiotherapy. It's not nice at all feeling sick all the time, especially when it gets very bad, but thankfully I have anti-sickness medicine which helps a lot and keeps it under control. I'm still feeling very tired too, also a side effect of treatment. 

I had such a fun day on Thursday, after I had my radiotherapy and Zena had her treatment too. My Mum, Zena and I went to Bristol Zoo Gardens. We both had lots of fun, visiting all the animals, some in particular the gorillas more than once, as Zena thought they were very funny. Zena and I had been asked if we would like to pet a penguin, which we did, as a special treat. Zena was very excited and couldn't wait to pet him, and neither could I as I've never petted a penguin before. He was very cute and adorable and I just wanted to take him home with me.  

If you live on the West Side of England, you may have seen on the local news yesterday evening, that my Mum and I were featured (only for a few seconds) on the clip about CLIC Sargent being one of the chosen charities for Text Santa. We were asked only a few minutes before they were recording that morning, if we would take part in the video. I was still in pyjamas and quickly shoved a pair of jeans, top and cardigan on, brushed my hair and only had time to put concealer on, while still half asleep when they were filming.

Have a Merry Christmas and a Happy New Year!

Danielle X

Sunday, 8 December 2013

''Deck the CLIC House with boughs of holly…''

My Mum and I arrived back in Bristol late last Sunday (01/12/2013) evening. It was sad to leave home again, knowing that I won't be back until my IMRT radiotherapy finishes in early January.

I'll be finished week two of six of IMRT radiotherapy this Monday. I can't believe how fast the weeks have gone, before I know it I'll be back home in N. Ireland. When the side effects of treatment have not been too bad, I've been keeping busy by writing my blog and packing The Danielle McGriskin Fund and Danielle's Journey wristband orders.

On Monday (02/12/2013) after I had my treatment late that evening, my Mum and I popped into a traditional French bakery up the road from the hospital. We got chatting to the lady serving us and she asked if we were on holiday here in Bristol. My Mum explained that I was here for treatment at the hospital and how we're staying at one of the CLIC Sargent houses. The lady serving us wanted us to take some more pastries and cakes (as they were expecting a fresh delivery the next day) for the other children and parents at the CLIC Sargent house, which we greatly appreciated. We were walking out of the French bakery with boxes of pastries and cakes, which were huge and filled with lots of cream. When we arrived back, everyone was amazed and said how tasty they were; it was lovely to surprise them.

Earlier this week, my Mum and I tried to do some Christmas shopping in Bristol, I was too tired and we had to come home (CLIC House) after going into one shop. When I got home, I fell asleep while watching the movie The Grinch (when I was younger I thought it was the scariest movie ever). I slept for five hours and my Mum didn't know whether to wake me or not, as it's not like me to fall asleep during the day, although I must have needed it. Tiredness is one of the big side effects of having radiotherapy.

I keep meaning to bring my IPod with me while I'm having treatment, so I can listen to my music. It's  probably a good thing that I forget to bring it, as I might start singing to all my favourite songs really badly. On Friday, the radiographers played Christmas songs during my treatment, which got me in the Christmas spirit, especially as my Mum and I were going to Bristol's German Christmas Market after I finished treatment that day. While we were at the German Market, we bought a traditional angel and Santa Claus gingerbread biscuit for my sister and I, and enjoyed trying some of the traditional foods. We've been trying to make our room at the CLIC House look Christmassy, so Mum brought some tinsel, snow flake window stickers, as well as 'make your own Christmas paper chains' and a few other bits too. I love Christmas at home when the house is decorated, as its all cosy and festive.

There are two sweet girls who are also staying at the CLIC Sargent house, they are called Jessica (who is eight years old) and Zena (who is four years old).  Jessica and Zena were both helping me make Christmas paper chains, while singing their favourite songs, they were amazing singers.  They really enjoyed helping me and when I first met them I couldn't believe how grown up they were for their age.

Jessica, Zena and I making Christmas paper chains.

Last week, when my Mum and I went to The Tea Birds for a nice 'cuppa' and sweet treat, I entered in their charity raffle. I found out earlier this week that I won a prize. I won a pretty gift bag which had cute paper clips and lip gloss inside. I was so excited that I had won something.

Collecting the raffle prize I won from
The Tea Birds.

I've been meaning to post this picture. It's a picture (not a very good one) mapping where the beams from the IMRT radiotherapy enter my head. It's not all the lines (beams) on the picture that are entering my head, only a certain colour. IMRT can reduce the risk of damaging healthy tissue near my brain tumour (my tumour is located on top of my stem), this is why this treatment was suggested to me rather than conventional radiotherapy.

Mapping of where the beams from
IMRT will enter my head.

Thank you to a charity called, Share a Star, who I received a Star from over the summer. Jessica, who set up Share a Star and is very unwell herself, sent me a Superstar Surprise, as I told her that I was going to Bristol for treatment for my tumour. Thank you Jessica for my Superstar Surprise and the amazing work you do for other poorly children too.

Me with my Superstar Surprise from
Share a Star.

I met with my oncologist on Friday, I'll be meeting with her nearly every Friday to see how I'm getting on with treatment. My radiotherapy has been going well, although it's making me quite tired, nauseous at times and my headaches seem a bit worse too. I was expecting this, as I had been told of the side effects, if any, will happen during week two or three of treatment. My oncologist said that she is pleased with how I'm doing since starting IMRT radiotherapy.

Mum and I have been walking to the hospital everyday for my treatment (apart from weekends, as I don't have radiotherapy on weekends, Christmas Day, Boxing Day and New Years Day). I would have never been able to do this before I had my latest surgery in Bristol, only several weeks ago. This surgery was to sort my hydrocephalus (water on the brain AKA Heidi). I have an appointment with my neurosurgeon from Bristol, in Bristol sometime soon, to find out how I'm doing since having my ETV operation.

Danielle X 

Sunday, 1 December 2013

The Beginning of IMRT

Mum and I took the ferry from Dublin to Holyhead, so that we can have our car with us while we're in Bristol. The journey wasn't bad at all, I really enjoyed our road trip from N. Ireland to England.

On the ferry from Dublin to Holyhead.

We drove from Belfast to Dublin, then got a ferry from Dublin to Holyhead, where we then drove to Stratford-Upon-Avon and stayed the night at our friends house, we then drove from Stratford-Upon-Avon and finally arrived in Bristol. 

When Mum and I arrived in Holyhead I thought we were in England. I shared on my charity Facebook and Twitter page that we were in England, only for my Mum to let me know that we were actually in Wales! It just shows how good I am at Geography, especially as I took it for one of my GCSE subjects last year (I apologise to the welsh and also to my Geography teachers in school).

As my Mum and I were passing through Stratford-Upon-Avon on our way to Bristol, we had arranged with friends of ours to stop at their house for the night. It was lovely to see them and catch up, as we hadn't seen each other in quite a while. When we left our friends house to continue our journey to Bristol, we stopped at a lovely village in the Cotswolds. Mum and I ate at a traditional pub in the Cotswolds for Sunday lunch. I really loved the Cotswolds, especially the area that we visited. The buildings were from the Tudor times and they were beautiful, it was a pretty and quaint village.

At a traditional pub in the Cotswolds.

After our Sunday lunch, we were on the road again and finally arrived in Bristol. We got to the CLIC Sargent house late that evening, where we're staying while I receive treatment for Annie. I decided it was best to unpack all of our things and get organised that evening, especially as we had nothing else to do. I flopped on the bed with exhaustion from running up and down all the stairs in CLIC House, as our room is on the third floor which is the top floor, together with the tiredness from traveling by car for nearly two days.

The next day I had my verification appointment at BRI hospital, which I was very nervous about. During the appointment, I had a scan of my brain while I was wearing my mask and the radiographers also drew markings on it to show where the beams from the IMRT radiotherapy will enter my head (a bit like treasure mapping). I also wear this mask for my IMRT radiotherapy treatment, to keep my head in place and stop it from moving. The mask is uncomfortable, but I only wear it for my treatment which is around fifteen minutes each day (apart from weekends, Christmas Day, Boxing Day and New Years Day).  

When my Mum and I were leaving BRI hospital after my verification appointment, we were very confused and lost while we were in the hospital lift (yes we got lost while we were in the lift). We couldn't remember what floor we were on for my appointment and didn't know which floor to get off at as there are also two lower ground floors in the hospital. Finally with the help of a couple of kind people, we soon got off on the right floor. 

We came across a really cute looking tea shop in Bristol. We decided that we'd go in and have a 'cuppa', especially as we had the whole day free after I had my verification appointment. It was a geogrous vintage tea shop, which sold a whole range of teas. They also sold delicious looking cupcakes and cakes. My Mum and I both had tea (I had Earl Grey as it's my favorite) and we also had a scone each. Our tea and scones were served in china cups, saucers and plates. The china had different pretty patterns printed on them, such as flowers. The tea shop is called, The Tea Birds and is definitely worth popping in if you're in need of a nice cup of tea and sweet treat.

Me at The Tea Birds in Bristol.

The next day was day one of IMRT radiotherapy. Luckily my treatment was first thing in the morning, as I was extremely nervous about having the treatment and I was thinking about the side effects of having the treatment. I also thought about what will go right when I have the treatment and how it will help with the pain around my eyes and vision problems; although it will take a year or two before my tumour changes for the better after having the treatment (this is because my tumour is slow growing). 

Today Is Day 1 Of IMRT Radiotherapy.

When I have my radiotherapy, I get to listen to music while I'm receiving the treatment. The music is played out loud in the radiotherapy room so that I can listen to it. I keep forgetting to bring my iPod or iPhone with me so that I can listen to my own music, so I've just been listening to whatever music the radiographers have had. All the radiographers have been so kind and professional, it's nice to talk to other patients who are going through treatment whilst Mum and I wait for my appointment slot.

After my first day of treatment, my Mum and I drove to The Brain Tumour Charity. It may sound a bit mad driving two hours to Farnbourgh where The Brain Tumour Charity HQ is, but the side effects of treatment don't usually happen for two/three weeks once treatment has started; so Mum and I have been trying to do as much as we can while I'm feeling well enough. It was brilliant to see new and old faces at The Brain Tumour Charity and find out about some of their exciting upcoming fundraising events and research projects, as well as sharing my Fund's events too. 

The team and I from The Brain Tumour Charity.

On Friday, after I had treatment that morning, my Mum and I planned to fly home that afternoon to N. Ireland. This will be the only time that my Mum and I will be home until my treatment is finished in early January. I went to one of my best friends birthday party and my other best friends who I hadn't see in a while were there too. The party was held at the birthday girls house, which was great as we all got to chat and I got to catch up properly with all my friends.

On Saturday afternoon, my auntie and uncle came up from Fermangh to visit while I'm home for a very short while, it's been really nice to see them. 

My Mum and I fly back to Bristol Sunday evening. As I said, we won't be home until my treatment finishes which is early January. As my Mum and I won't be home for Christmas, my Dad and sister will be coming over to Bristol for Christmas. It will be different not being at home for Christmas and seeing our family and friends, but I'm sure we'll make the most of it and enjoy it as much as we can.

Danielle X