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

Friday, 22 November 2013


A huge thank you to a truly wonderful charity called, Alice's Escapes, for arranging a short break away to Dublin for my family and I last weekend. Alice's Escapes have given my family and I special time to be together, before my Mum and I head to Bristol tomorrow (Saturday 23rd November 2013) so that I can receive treatment for Annie (my brain tumour). We had a wonderful time being pampered at the hotel spa, enjoying being in Dublin, meeting up with family friends and being together as a family forgetting about hospital appointments. The hotel that we stayed in was lovely, many famous people have also stayed their too, such as Queen Victoria. We read that Queen Victoria had a sixteen course breakfast while staying at the hotel (I could never imagine eating a sixteen course breakfast, they must of been very small courses). There was also a restaurant which was named after Laurel and Hardy.

My Mum and I have been busy packing and getting ready most of today, ready to leave early tomorrow morning to take the ferry to Bristol. On our way to Bristol we will be making a stop to visit friends of ours, it will be lovely to see them again as we haven't seen them in a while. On Sunday we shall be setting off again and making our way down to Bristol. On Monday I have an appointment with my oncologist again and then on Tuesday will be my first day of IMRT radiotherapy which will last six weeks. After my first session of IMRT radiotherapy, my Mum and I will drive to Farnborough to visit The Brain Tumour Charity. They are the charity that I support very much and any money I raise for brain tumour research goes to them; you can read more about my fundraising and awareness raising of brain tumours with The Brain Tumour Charity by viewing the links down the right hand side of my blog.

I will keep you posted throughout my time in Bristol through my blog, as well as  my Facebook and Twitter pages.

Packed and ready to head to Bristol.

Danielle X

Monday, 18 November 2013

Heidi And I

My family and I arrived in Bristol on Thursday 31st October 2013. The flight over was unpleasant for me as it caused me to have horrible pressure in my head and eyes, so I tried to sleep on the plane which was very hard to do. My family and I stayed at the CLIC Sargent house in Bristol, where we stayed when I had the biopsy of Annie (my brain tumour) in June 2013. It was lovely to see the staff who work at the CLIC Sargent house again, as they're all so kind and friendly.

The next day (Friday 1st November 2013) I met with my oncologist at Bristol Children's Hospital, where my family and I were told the risks and benefits of me having IMRT radiotherapy and other information about the treatment. After this meeting I then had my mask made for IMRT radiotherapy (which can double up as my halloween mask next year), which took place in the hospital. I was quite nervous about having the mask made, but it really wasn't as bad as what I thought it was going to be. The man who made the mask explained everything that would happen, this made me even more nervous as I just wanted to get it over and done with. When I was having the mask made I couldn't talk at all and I had to keep my eyes closed the whole time as the mask covered my whole face. To make the mask they took a large piece of plastic material and placed it in a hot water bath to soften it, they then placed it over my face and made sure by using their finger tips that it fitted neatly around my nose and eyes. They then waited for it to completely harden and once it hardened it was lifted off my face, and then it's finished. Making the mask took around 15 minutes, so it wasn't too long and wasn't too unpleasant.

After my mask was made I then had an MRI and a CT scan of my brain for the planning of my treatment. During the CT scan I wore my mask for IMRT radiotherapy. The mask felt tight and uncomfortable, but I knew I wasn't going to be wearing it forever. During the meeting with my oncologist, I told her that I thought I might have hydrocephalus again (AKA Heidi). After I had my scans my Mum and I were told that I did have hydrocephalus again.

That evening I was admitted to Frenchay Hospital, Bristol, this is where the paediatric neurosurgery team is based. My Dad and sister went back home to N. Ireland the next day. On Saturday 2nd November I had a special kind of MRI scan at Frenchay Hospital, where the radiographers could see where the CFS (brain fluid) was flowing in my brain. During the MRI scan I got to listen to Olly Murs and Amy Winehouse. Listening to music is the only good part of having an MRI scan, as the machine is very noisy and you have to wear ear muffs and sometimes ear plugs too to protect your ears. After I had the MRI scan it was then decided that I would need an ETV operation. The ETV operation was the very first operation that I had for my hydrocephalus caused by my tumour in June 2011.  Unfortunately, the first time the ETV was done it did not work. Just a little biology lesson - ETV stands for Endoscopic Third Ventriculostomy, it is an alternative to a shunt placement for the treatment of hydrocephalus. The technique opens a hole deep inside the brain to re-establish effective flow of cerebrospinal fluid (CSF). It is used especially if a tumour is blocking the aqueduct, as is the case of Annie. The neurosurgeon on call in Bristol who operated on me didn't take my shunt out when he carried out the ETV incase the ETV doesn't work, but he did tie my shunt off with 'silk string', so that the shunt doesn't work anymore and the ETV is now doing all the work (it is also a very expensive shunt). An ETV is a more natural way for the CSF (brain fluid) to flow so it can take longer for things to settle down. I will be so pleased if the ETV works, as I don't like having a shunt as it sometimes makes funny noises and I can feel it through my skin on my head and near my neck, I've also had to have many of operations because my shunts has got blocked which is very common and other problems too.

On Monday 4th November I was discharged from hospital, and I could rest back at the CLIC Sargent house. My Mum and I stayed in Bristol, as you're suppose to wait two/three weeks before flying on an airplane after an ETV operation, this is because they put a little bit of air in my brain during the operation; I guess you could say that I was an air head. Although one of the Nurses in charge arranged for me to have a CT scan earlier on Sunday 10th November in the hope that the air had gone by then, which thankfully it had. Once we found out the fantastic results from my CT scan, my Mum and I quickly dashed around packing our belongings, as we could catch a flight that evening home to N. Ireland.

A nice thing happened when my Mum and I were both boarding the plane. The lovely air hostess said hello to me and explained that she follows my journey on Facebook and how she was wondering if I was going to be on her flight home to N. Ireland, as she had read my recent Facebook posts. It was very strange to be spotted I guess you could say, but also really nice as it shows people really do read my posts on Facebook and are becoming aware of brain tumours, as well as hydrocephalus.

Step: 1
of having my mask made for IMRT

Step: 2
of having my mask made for IMRT

Step: 3
finished mask for IMRT

Danielle X

Monday, 28 October 2013

It's A Date

After many months of waiting after I had the biopsy of Annie in Bristol in June 2013; I can now say that I have a confirmed treatment plan and date which will hopefully shrink my brain tumour (Annie). The confirmed plan is, that I will be having 6 weeks of IMRT radiotherapy in Bristol, I will receive this everyday apart from weekends as well as Christmas Day and Boxing Day. This means my family and I will be spending Christmas at the CLIC Sargent house in Bristol this year, which will be something different, but at least it's only one Christmas and I've got many more Christmas' to look forward too. Also, it will only be my Mum and I who will move to Bristol so that I can receive treatment. My Dad and sister will stay at home in N. Ireland and my Mum and I will fly home to see them and vice versa. Before I start IMRT radiotherapy, I will be meeting with my oncologist in Bristol this Friday (Friday 1st November 2013), on this day I will also be having scans taken of my brain as well having a mask made that I will wear when having my treatment. My family and I will then be flying home again that weekend. On the 25th November I've to go back to Bristol to have everything confirmed and then on the 26th November will be day 1 of IMRT radiotherapy. It's going to be a tough journey ahead, but with the support of my family and friends I'm sure I will be just fine. If IMRT radiotherapy doesn't work, there are two other treatment options that have been suggested, but I'm not going to jump ahead just yet and take each day a it comes.

Just like I did when I had the biopsy of Annie in Bristol, I will keep you up-to-date with my journey through my blog as well as my Facebook and Twitter pages, with short updates and photos.

As you can see, so far I've ticked off one thing off my list called, 'Things I would like to see/do before I go to Bristol for IMRT radiotherapy'. I've still got time to do the other things, some of which have been put in place, which I'm very excited about.

I started steroids several weeks ago, I'm now on a reduced dose which started this week. My cravings have been completely different this time compared to the first time when I was taking them. This time I've been craving scrambled eggs on toast everyday for breakfast (hmm hmm)! Where as last time, the first time I was on steroids, it was Fanta lemon, Sour Cream & Chive Pringles and the hospital's cafe paninis from RVH in Belfast, when I stayed there over the summer due to Heidi (hydrocephalus).

I've decided to take a year out of school this year, which is the last thing I wanted to do. Although, I think it's the best decision for me, as my symptoms have become worse, especially my eyes. I also don't want to push myself too much where I don't get the results in my A-Levels that I hoped for and may have to repeat the year again anyway. As I'm not in school I'm keeping myself busy by doing mini art projects suggested to me by my CLIC Sargent in Northern Ireland Social Worker, as well as my fundraising and awareness raising of brain tumours. The art projects have been great fun to do, although I've just about got one done so far. I've made (very nearly finished) making a cork board of memories from when I was in Bristol over the summer having the biopsy of Annie. I kept the wristbands that I had to wear when I was in hospital in Bristol, as I do for every hospital stay, so I've pinned those on the board too.

As Halloween is coming up, my sister and I carved a pumpkin each yesterday (Sunday 27th October). My Mum also brought a 'Munchkin Pumpkin' for my pug Harry, which my sister carved a face into as well. I must say it's very cute, as it sits outside beside my sister's and I's pumpkins.

My sister, Rebecca; pug, Harry and I with our
pumpkins ready for Halloween.

Danielle X

Wednesday, 16 October 2013

Belfast To Bristol

I met with my neurosurgeon at RVH, Belfast on Thursday 3rd October 2013 to discuss the different treatment options for Annie (my brain tumour) as suggested by the medics from Bristol and Belfast. The outcome of this appointment was that my neurosurgeon gave us another treatment option to think about. He was also brought my case to another MDM (Multi Disciplinary Meeting) in Belfast. At the MDM a decision was made that Belfast would let Bristol take over my care regarding my brain tumour, as there needs to be one main carer to take charge so we can move forward with my treatment plan and getting me better. We were told this on Tuesday 8th October 2013, we were also told that my treatment plan has been confirmed by the medics in Bristol. The decision is, I will be having six months of IMRT Radiotherapy at a hospital in Bristol. Although Belfast have an IMRT radiotherapy machine, they've never given this type of treatment on the brain before. I'm very pleased that Bristol are taking over my care for my tumour, as they've been very consistent, understanding and have made sure that any decision that has been made has been relayed back to my family and I. So that I can receive this treatment my Mum, Amanda and I will be living at a CLIC Sargent house in Bristol again, just like my family and I did when I was having a biopsy of my brain tumour in Bristol. It is a very long time to be away from family and friends, but my Mum and I are going to try and come home to see my Dad and sister, Rebecca as much as possible, and vice versa. As I don't have a confirmed date for when I will be going to Bristol (I should be going in the next coming weeks), Mum and I have been getting ready in preparation for the day. As I'll be away from school, I am going to try and continue with a couple of my A-Levels.  I am going to miss my friends and family but I'm sure we'll keep in contact by text, Facebook and everything else. I've started steroids again yesterday, and I'll be on these for a few weeks, so that means cravings for Fanta lemon! The steroids will help ease my symptoms whilst I wait for the treatment to begin.

My family and I went out for dinner together on Sunday 6th October 2013 to The Tannery, Moira. It was the second time that I had been out in three weeks, the first was my hospital appointment to see my neurosurgeon, which doesn't really count. It was really nice to go out but also very tiring. This week will be my fourth week off school. I'm in a lot of pain caused by my head and eyes as well as pressure headaches and vision problems, which is making me stay off school.  I'm lucky that my school is allowing me to do my A-Levels over three years.

I ordered a pair of false nails from Devine Nails. They're a business in N. Ireland who make personalised false nails for every occasion. I decided to have the brain cancer awareness ribbon on my nails, ready for March which is brain cancer awareness month (I know it's ages away, but I just couldn't wait to get them!). My Mum, Amanda got a pair too.

My Brain Cancer Awareness Ribbon nails from
Devine Nails.

As you may have seen I've added a list to my blog just like I did before I went to Bristol to have a biopsy of my tumour, of all of the things I would like to see/do before I go to Bristol to have IMRT Radiotherapy. So far I've ticked one thing off my list, which was to go to the cinema. My Mum, sister and I went to the cinema over the weekend and saw the movie Diana. We thought it was a fantastic film and the actors and actresses were superb.

Danielle X

Wednesday, 2 October 2013

September (wasn't sure what to call this post)

Tomorrow I'm meeting with my neurosurgeon from Belfast (my original neurosurgeon has left so I am now under the care of another neurosurgeon) to discuss the different treatment options suggested by the medics in Bristol. Belfast will also be having another MDM (Multi Disciplianry Meeting) to discuss treatment options. All I want to do is to get better, go to school, go out with my friends and family with out suffering from extreme head and eye pain. Over the last week and a bit I've not been able to attend school at all due to my  symptoms, which is very frustrating especially as I'm trying to do my first year of A-Levels this year. 

My younger sister, Rebecca (15 years old) was very unwell a few weeks ago. She woke up with dizziness, sickness and vision problems. My Mum took her into hospital where she was diagnosed with extreme vertigo. Rebecca was admitted into hospital where she stayed in the same ward and the same hospital room that I stay on when I've been in hospital in Belfast. Luckily Rebecca was discharged the same day and is feeling much better. 

My family and I went to see the Belfast Giants ice hockey game on Saturday 21st September 2013. It was the third time I've seen them play and I had a brilliant time (although I'm still not sure of the rules, so when the crowd cheered I cheered too and so on). 

Me at the Belfast Giants ice hockey game.

My local horse riding stables, Tullynewbank Stables kindly held a family walk called, The Danielle McGriskin Fund Family Walk, on Sunday 22nd September 2013. It was a lovely afternoon with hot dogs and refreshments. It was great to see many people from my local community come and support much needed brain tumour research. A fantastic £549.40 was raised!

One of my best friends Orlagh and I at
The Danielle McGriskin Fund Family Walk.

I received a lovely message from one of my supporters, through my charity Facebook page a few weeks ago, asking if she could run in the Belfast Deep River Rock Half Marathon for my Fund, The Danielle McGriskin Fund. I was so pleased and grateful for Jenny wanting to run in the half marathon for my Fund on Sunday 22nd September 2013. Jenny raised over £300 and is the first person to run for #TeamDanielle. 

My Mum, Amanda; Jenny and I at the
Belfast Deep River Rock Half Marathon.

One of my best friends Orlagh, held a very successful bun sale at her school, Aquianas Grammar School. All her school friends supported her by baking delicious buns, cakes and tray bakes and helping her sell them to the staff and pupils of Aquinas Grammar School. Orlagh raised an amazing £430.45!

Orlagh (middle) with friends at the bun sale Orlagh held.

Danielle :)

Sunday, 15 September 2013

Back To School

I started back to school I think three weeks ago. I'm not sure exactly, but if it has been three weeks it has flown by. I'm doing my first year of A-Levels this year. The subjects that I've chosen are, Biology, Sociology and Business Studies. I've never done Sociology before, I'm really enjoying it and find it very interesting. I've been going into school for my subject classes and for some study periods only. This means I can rest more and make it in for a whole week of school. So far I've only missed one day, which is amazing! On that occasion I didn't feel well when I woke up, but got dressed and ready for school. My Dad and I were less than a minute drive away from home, when I felt very sick, pressure headachy and normal head and eye pain. Luckily I made it home in time as I was sick twice, which is so unpleasant, especially with a sore head and eyes.

You may know that September is Childhood Cancer Awareness Month. To support brave children who have fought or are still fighting childhood cancer, my family and I went to Belfast City hall on 07/09/2013 to watch it turn GOLD.

At Belfast City Hall, supporting
Childhood Cancer Awareness Month.

My sister, Rebecca and I were asked by Northern Ireland Cancer Fund for Children (NICFC) to be part of their new campaign, which we both agreed to do. It was then arranged for us both to have a photo shoot together, which we had so much fun doing, and felt like real models. This campaign is over two years, the pictures that were taken of my sister and I maybe on billboards, bus stops, buses, NICFC information booklets and more. It's all very exciting, and I hope the charity raise even more awareness and funds.

Sneak preview from the photo shoot for
NICFC's new campaign with the
photographer and his dog.

To my surprise, I received a letter from my school on 06/09/2013, to say that I was nominated by my school teachers to receive two prizes at my school's forth coming Senior Prize Giving. I was extremely surprised and so grateful for the nominations. The prizes that I won are called, 'Commendation for Consistent Hard Work over the two years leading to GCSE', and 'Sara & Lucy Ross Award for Outstanding Endeavour'. The 'Sara & Lucy Ross Award for Outstanding Endeavour' is a joint prize, I was wondering when I received the letter who I was sharing this prize with. Then one of my best friends Lauren text me later that day to say that she had also won this prize.

Lauren and I with our certificates and broach for
'Sara & Lucy Ross Award for Outstanding Endeavour'.

Sunday, 8 September 2013

Thank You

Since my family and I appeared on UTV Live over the summer holiday, I was contacted by Titanic Belfast and the Grand Opera House, Belfast. This was because before I went to Bristol, England for the biopsy of Annie (my brain tumour), I wrote a short list of the things I would like to see/do before I go to Bristol. I completed some of the things on this list such as, going to Bubbacue Restaurant,  Paint Me Glaze MeThe Cookie Box and have a leaving party with my friends and family at Home Restaurant. I ran out of time to go to the Grand Opera House and Titanic Belfast. I was really disappointed as I wanted to try and get everything done on my list. I was delighted when I received an email from Titanic Belfast, to say that they would like to invite my family and I to visit. We had a brilliant time and we are very thankful for them organising and inviting us. We were given a special guided tour called Titanic Discovery, which I would highly recommend you to go on. The same day that my family and I were invited to go Titanic Belfast, I got another email from the Grand Opera House, inviting my family and I to see the musical Evita on Friday 6th September 2013. My sister and I had never seen this musical before so we were really looking forward to it. Before my family and I went to see Evita, we went out for a very delicious meal at The Barking Dog, which is a lovely restaurant located in Belfast. Evita is a phenomenal musical, the actors and actresses were fantastic and had amazing singing voices. I'm delighted we were invited to see it.

Me standing outside Titanic Belfast.

Titanic Belfast.

Titanic Belfast.  

Me at the Grand Opera House.

My sister, Rebecca and I at the
Grand Opera House.

Me at The Barking Dog.

Friday, 30 August 2013


After my long stay in hospital, finally I was able to enjoy the rest of my summer holidays.  My Mum and sister went to Spain for a short break, I was glad they were able to get away for a relaxing holiday. Unfortunately my Dad and I didn't go, as I've been attending hospital every Thursday as an outpatient, to have the pressure on my shunt adjusted. This is to see if it will help with some of my symptoms, which unfortunately it hasn't. While my Mum and sister were holidaying in Spain, my Dad and I went to Fermanagh to visit my Granny, Uncle, Aunt and cousins. The weather wasn't very good which was a shame, as it had been very sunny and hot. By the end of the day I was feeling very tired and in a lot of pain, I ended up falling asleep in the car on the way home, but I was pleased to see my family.

Me at one of my outpatient appointments. 

While my Mum and sister were in Spain, my Mum's friend who is excellent at arts and crafts, came round to my house to show me how to decoupage and make jewellery. I keep thinking to myself, I could decoupage this, or make jewellery out of that! We had a lot of fun and it was great to learn something new.  

I went out for dinner for the first time all summer with my Mum, sister and  our good friends. We had a lovely time and it was so nice to catch up properly and enjoy our evening out.

Out for dinner with my Mum, sister and friends.

My Uncle and cousin came over from England to visit for a couple of weeks during the summer holiday. It was lovely to see my younger cousin, Sarah who I hadn't seen in a very long time. Sarah and I spent a couple of days watching the Harry Potter series, which she loves!  

My sister, Rebecca; cousin, Sarah and I.

Over the summer I got a surprise contact from UTV, who came across my blog and were interested in doing an interview with my family and I, about my awareness raising and fundraising of brain tumours, as well as my blog. I agreed to do the interview, but I was feeling very nervous on the day.  The cameraman and Alison Flemming the presenter from UTV Live, came to my house where the interview was held. Alison was lovely and I enjoyed the day very much.  Since appearing on UTV Live, it has helped raise awareness of my fund with The Brain Tumour Charity, awareness about brain tumours, as well as my blog which I enjoy sharing with you.

My cousin and I went to watch a local horse show with my friend and
her family. We had a great time and the weather was perfect; even though it wasn't raining, I still wore my Hunter wellieboots! We found out that some of the horses and riders have been on the TV program Game of Thrones.

My Mum, cousin and I went shopping for school stationary.  I love looking through all the pretty patterned notebooks, pencil cases and more. We had many coffee breaks during our shopping trip to sit and rest when my symptoms increased. This can be annoying as when I want to go out and do something, I have to stop and rest, but  I always try to ignore my pain and other symptoms and keep going.

My 17th birthday was on 21st August. I went out with my friends to Home Restaurant, Belfast, which is one of my favourite restaurants!  It was a brilliant evening and so nice to catch up with everyone before school started.  I got some lovely presents and a beautiful cake made Baking A Smile. The next day I received my GCSE results, I done very well and got B's and C's, which my family and I are very proud of, especially as I haven't been able to attend school full time over the past two years. My school have also been very supportive which helped me get my GCSE’s.

Me at my seventeenth birthday party at Home Restaurant.

Saturday, 27 July 2013

Where Do I Begin?

As you know my family and I arrived safely back from Bristol to N. Ireland on Sunday 23rd June 2013. I was feeling and recovering well from my biopsy operation of Annie (the name I've given my brain tumour). Unfortunately the next day I was extremely sleepy, not like a normal tiredness but exhaustion, where I was sleeping all night and most of the day. I was also suffering from double and blurred vision, in which I asked my Mum to make me a temporary eyepatch hoping that my symptoms would pass after a day or two. I had been holding off going back into hospital for a week, as I didn't want to have to go back in after just coming out of one hospital. My symptoms weren't getting any better but much worse. My Mum decided to phone my neurosurgeon in Bristol to let him know how I was feeling. He suggested that I should have a CT scan of my brain and for the scan to be sent to him, as Bristol have my latest scan so they could compare it and make sure that everything was OK. The following day, which was Sunday morning, my Mum and I went to our local A&E, where I had a CT scan of my brain, neurological examination and blood tests. My Mum and I were both expecting the scan results to be just fine, but to our surprise we were told that I had hydrocephalus (water on the brain) again, or as I call mine, Heidi. When I was having my bloods taken in A&E, the lovely Doctor tried two times but couldn't find a vein, I told her that I have the worlds worst veins. After the two attemps at trying to find blood, I decided to try and look for a vein and told her to try it. The Doctor looked at my Mum as if to say, do I go with what the patient is saying or do I leave it for somebody else to try. The Doctor then tried the vein that I told her try and she got blood! When I have hydrocephalus I become more confident, smiley and giddy, looking back I can't believe I done this as it's so not like me.

In A&E. 

I was admitted straight into hospital on the same ward that I have stayed on previously, so I knew who some of the Nurses were. I was in hospital for 18 nights, where in a nutshell I had four operations regarding my hydrocephalus. Operation 1 - Replace the tube which runs from my valve to my tummy, this didn't help. Operation 2 - Replace the valves in my head and replace the tube again, plus put a probe in my head to monitor my brain pressure, this didn't work.  I was still very sleepy and my eyes still couldn't focus and now move very well. I began leaking CFS fluid (brain fluid) out of my wound on my tummy. Operation 3 - The neurosurgeons realised my stomach was not absorbing the CFS fluid, so I had an operation to attach the tail end of my shunt to a bag outside my tummy, this is called an EVD. I was also started on IV antibiotics just incase the CFS fluid was infected, and good news, it wasn't.  Operation 4 - Put the tube back into the other side of my stomach and kept my fingers crossed that it would work. It hasn't been a smooth journey, for one of my operations it took three anaesthetists three hours to find a vein, which unfortunately they couldn't find. I ended up having to have a procedure to have a central line put in the side of my neck. The procedure for this was uncomfortable as I was awake and local anaesthetic was used. The anaesthetist was very kind and she let my Mum stay for the whole procedure, which didn't take too long. It's a good job my Mums not scared of blood and surgery.

When I was having my third surgery, I still had hydrocephalus so my personality was still very confident and cheeky. I remember asking the anaesthetist for surgery number four if he could wash my hair, as it gets covered in iodine which is used to prep the patients skin before surgery. I told him how when I was having my biopsy operation in Bristol, the neurosurgeons Reg washed my hair for me while I was still asleep in theatre. I also told him that it was my anniversary of being diagnosed with Annie (my brain tumour) and Heidi (my hydrocephalus). He must have felt sorry for me as to mine, my Mums, the Nurses and patients on the ward surprise, my hair was lovely and clean at my cheeky request.

After 18 days spent in hospital, I was given the all clear to go home. I was very excited and couldn't wait to start to enjoy the summer holidays. After just two days of enjoying the sun, I couldn't move my eyes properly, I knew what was coming next, instead of waiting for a week in the hope it would disappear, my Mum phoned the hospital ward and once again I was told to come straight in to hospital. The only good thing was I was going back into a bay where I knew some of the ladies who I had meet at my last stay, so it was really nice to catch up and find out how they were doing. Whilst in hospital we supported each other, they called me smiley as I was always smiling, and every time I came back from surgery they couldn't believe how quick I came around from being under anaesthetic. Many of the hospital staff such as the porters, theatre staff, radiographers, Nurses and catering staff know my name. This is because I've been in hospital quite a few times over the past two years since being diagnosed. I hope they think I'm an excellent patient!

There are a number of new Nurses on the adults neurosurgical ward, together with the Nurses who have been there longer, they are all brilliant and very caring. I received a very cute owl card with a lovely message from one Nurses who looked after me, I showed her a picture of my owl cushion that I brought with me to Bristol hospital.  

The owl card my lovely Nurse gave me.
I had a scan to check that the fluid wasn't gathering in my stomach, and an MRI scan to check that my ventricles weren't enlarged, they were all fine, so the neurosurgeon's Reg adjusted the valves which does not require surgery and I've to be followed up every week as an outpatient to check if the setting pressure is OK and to if it needs adjusted. I got discharged from hospital again on the 26th July 2013 and came home to the lovely weather and a tasty BBQ!

This is my third summer in a row that I've spent in hospital, the first time I was just diagnosed with Annie and Heidi, the second time was to do with my shunt and hydrocephalus and this time was the third. They say everything usually happens in threes, so I hope that this will be the last time I will spend some of my summer holidays in hospital, fingers crossed!

Thank you very much to CLIC Sargent in Northern Ireland for sharing my Blog on their Facebook page. Hopefully the people who saw this on Facebook are reading and keeping up with my Blog. 

I've finished my course of steroids, they finished sometime during my first stay in hospital this summer in Belfast. I don't have cravings anymore for Fanta lemon, the paninies from the hospital cafe and Pringles sour cream and chive crisps (although they didn't taste right but I still craved them). 
Thank you Home Restaurant, Belfast
who made a lovely meal for me while I was in hospital.

-Colouring book, ''The Usborne book of Drawing, Doodling and Colouring'', the Nurses on the ward thought that this book was amazing and some said they would buy it for themselves. 
-Crossword Book 
-I-Pad (to keep in touch with friends and family, play games, carry on with my fundraising and awareness raising of brain tumours and more). 
-Wristbands (I continued selling my wristbands when I was in hospital, sorting out orders from my online shop as well as selling them to the patients and many of the hospital staff, such as the porters, Nurses and Doctors in hospital. Thank you for your patience in receiving them, also a big thank you for supporting my Fund with The Brain Tumour Charity).

Wednesday, 26 June 2013

I'm Home

I started my steroids on Wednesday 19th June 2013, the same day I was told I was going to be taking them and the same day I was given my biopsy results. I'm on a very low dose of Dexamethason, I have to take four tablets in the morning after breakfast and four tablets in the evening at dinner. This will be reduced soon as I'm only to be on them for 3 or 4 weeks. The steroids are used to help with any swelling in my brain.

My Mum and I went to a lovely vintage style tea and coffee shop called, Chin! Chin! which is in Bristol, while we were waiting to collect my steroids from the Pharmacist. We shared a very tasty slice of Victoria Sponge Cake and had a delicious cup of Earl Grey tea (one of my favourite types of tea).

At Chin! Chin!

That evening my family and I went to a a fish restaurant along the Bristol harbour. We invited a young girl called MiMi, who is 6 years old and was staying at the CLIC Sargent Home From Home the same time we were staying there, as her adorable cousin Jay, is receiving treatment for his cancer. MiMi is a walking, talking encyclopaedia when it comes to dinosaurs. She can name every single dinosaur there ever was off by heart. MiMi had a brilliant time and really enjoyed her meal, so did we all! My sister Rebecca had lobster, my Mum had fish cake and chips, my Dad had a prawn dish, I had a spicy, ginger prawn dish with fluffy rice and MiMi had mussels and chips. The food was amazing, and if I could remember what the restaurant was called I would tell you, as it is a must place to eat if you're in Bristol and are a fish fan.

I was allowed to go back to N. Ireland 48 hours after starting my steroids, just to make sure I was OK on them and didn't take an allergic reaction to them. Luckily the steroids haven't caused too many unpleasant side effects. My Dad went back to N. Ireland on Friday 21st June 2013 as my Dad had to go by Ferry in order to take the car back home, together with all my LUSH and other beauty products. My Mum, sister and I had planned to go back on Monday 24th June 2013, but I couldn't wait to get home into my own bed, in my own house, that's when my Mum made the decision on the morning of Sunday 23rd June to fly home that afternoon. I was so excited to get home and see Harry my pug, as well as my four fish and cat. I didn't realise how much I missed home until I had to be away, its not like going on holiday. I was sad that I wasn't going to to see my new friends but I know we will catch up again in the future. With only a few hours to get packed, washed, dressed, tidy our room at the CLIC Sargent House, say goodbye to new friends of ours at Bristol Children's Hospital and have lunch, it was a bit of a rush, but surprisingly we were early for our flight and had plenty of time spare so we stopped for a Starbucks. Luckily when flying home I didn't have as much pressure in my head than when flying to Bristol, this can be very unpleasant and uncomfortable. Although, since arriving home, my eyes have been playing me up so much that all I can do is rest and sleep, luckily today they're starting to feel a teeny weeny bit better. Hopefully over time they will improve as I'm finding it very tiring and my eyes have been hurting quite a lot. Being stuck at home means I have been occupying myself by doing word searches and I am still busy with my fundraising for The Brain Tumour Charity - Danielle McGriskin Fund.  I have some exciting news to share with you about the possibility of a large organisation choosing my charity to be their charity of the year. I'm also looking forward to catching up with my friends and hope to see them before they go away on holiday, and before I go (fingers crossed) on a short trip to the Harry Potter Studio in London with my family which I'm very excited about. In Northern Ireland we are lucky that schools finish at the end of June, so its a long holiday for us and hopefully I will be used to getting my radiotherapy, so I can aim to get back to school in September to sit my A Levels.  My mum has taken some time off work to look after me full time and my sister has finished school too, but Dad is still at work at the moment.

The steroids are now working and have been making my food taste very salty and strange, they also make my tongue feel as if I've burnt it, which I haven't. I had some ice-cream when my Mum, sister and I went to Bristol's Big Market. The ice-cream tasted extremely salty and I couldn't eat it at all as it was so unpleasant. The same day I had spaghetti at a really nice Italian restaurant and that also tasted very salty, although yesterday I found that chocolate milkshake tastes normal! Not the healthiest thing to drink but at least it tastes normal.

Even though I'm not currently in Bristol anymore, I will still be writing this Blog, as it is my journey about living with Annie (my brain tumour) and I hope that you will follow. I have done a little bit of video recording when my family and I were in Bristol. I'm hoping to put together all the short videos that were taken, so please check out my Blog every so often to read my posts, or scroll to the bottom of this web page and in the space provided type in your email address to receive an email when I have posted something new on my Blog. As you can see at the top right hand side of my Blog I have a list called, ''Things I would like to see/do before I go to Bristol'', unfortunately I didn't have time to do everything on this list before my family and I went to Bristol for my biopsy operation. I also made a list before I went to Bristol of things I would like to see/do in life, a bit like a bucket list. I was inspired to write a list of things I would like to see/do in life by an amazing girl called Alice Pyne who sadly passed away from cancer, Alice also wrote a Blog.

Danielle :)

Saturday, 22 June 2013


Today from 5pm - 8pm please Tweet the following using the hashtag, #TeamDanielle

The following is what I would like you to Tweet:

PLEASE help @daniellemcgfund raise awareness of brain tumours by Tweeting #TeamDanielle with a link to her blog:

I am trying to raise vital awareness and vital funds of brain tumours, so I am wanting to get as many people as possible to Tweet this.

I am using the hashtag, #TeamDanielle as a couple of people first started using it on Twitter to help promote my awareness and fundraising of brain tumour research.

This is for all those who fought, are still fighting or sadly passed away from a brain tumour.

Danielle X

Biopsy Results

I was feeling well enough to be discharged from hospital the day before Father's Day, which I was very pleased about as I didn't want to spend Father's Day in hospital. I was supposed to be discharged a day ealrier, but I ended up having to stay another night as I walked around the hospital ward, was pushed in a wheel chair to Prof Gill's office (to look at the pictures of my brain taken during my surgery) and helped pack a few of my things which made my head pain and other symptoms increase dramatically. I think the excitement of getting out of hospital was a bit too much (oops a daisy). My Mum, Dad, sister and I are staying at the CLIC Sargent Home from Home whilst I get over my operation and while we were waiting for my biopsy results. My head has been extremely sore from surgery, probably because they had to screw a heavy metal frame into my head in four places, making my head very sore and swollen. Luckily, over the past couple of days my head pain and vision problems are getting back to their good old normal selfs (by normal I mean my everyday head pain and vision problems). I had been sleeping lots and lots, due to being under anaesthetic for 5 hours. I would go to bed at 8pm, wake up the next day at 7:30am, have breakfast, go back to bed until 12pm, have another snooze later in the afternoon, have dinner around 6pm then go back to bed at 8pm again. I am still feeling a bit sleepy but I'm not sleeping during the day anymore, but making sure I have an early night so I have enough energy for the next day. I always wake up every day with the intention to do something even if its small, some days I can do something for a couple of hours and some days I can't, but I have learnt to take one day at a time and enjoy the things I can do even if it's something simple.

My family and I went to Jamie Oliver's Italian Restaurant in Bristol on Tuesday 18th June 2013. The food was absolutely delicious, especially the ice-cream. I was very excited to go to his restaurant and I would definitely recommend it if you are in or around Bristol. After my family and I went to Jamie's Italian Restaurant, we took a family trip to the Bristol Aquarium. It was on my list of ''Things to do While I'm in Bristol'', so we definitely had to go there. At the aquarium we saw sharks, Nemo and Dori from Finding Nemo (not really but it looked like them), Piranhas, a huge long green thing which looked a bit scary and lots of other weird and wonderful fish and sea creatures.  It was lovely to go out and keep my mind occupied as my family and I were waiting for a phone call from my consultant Mr Pople from Frenchay Hospital about my biopsy results.

At Jamie Oliver's Italian Restaurant

My sister Rebecca and I at Bristol Aquarium.

Early on Wednesday 19th June 2013, Mr Pople phoned my Mum to discuss my biopsy results. My family and I were in the same room together at the CLIC Sargent House, I felt very anxious and just wanted to know the results straight away. My Mum got permission from Mr Pople to put her phone on loud speaker so that we could all hear. Mr Pople told us that my brain tumour is called an Astrocytoma and that it's Grade 2. Mr Pople wants me to start steroids immediately and he wants to discuss my case at a number of MDT meetings to decide the exact treatment plan. He said that I would need treatment as it is possible that my tumour could become more aggressive and turn into a Grade 3 or 4. I was relieved and pleased that finally after two years with 5 operations and lots of meetings with different consultants that Mr Pople wanted to help me and was sure that my tumour was causing my problems and not my hydrocephalus.  I'm sure that I didn't need all my shunt revisions and operations, but finally I am pleased to think that I am going to be able to fight my tumour and get better and be able to do and see all the things I want to do and see in life. Later that day, Mr Pople phoned again to speak to my Mum to say that he had discussed my results at an MDT meeting and that they felt that I should have 6 months of radiotherapy, its a type of radiotherapy called Intensity Modulated Radiotherapy. He was not sure if I could have it in Belfast or in Bristol. I hope it can be done back home in Belfast, as much as I like Bristol and the hospital care, its a long time to be away from my friends and school, if it does have to be carried out in Bristol at least I can stay at the CLIC Sargent Home From Home with my family which is really relaxed and friendly and I can see more of Bristol and do my A-Levels here.  I will have to wait and see because Mr Pople wants to speak about my case at some other MDT meetings to make sure that this type of treatment is the best one. It was a lot to take in but I'm sure whatever decision is made I believe I will get me better and fight this.

I had been looking very black and blue on my arms and feet, from where I was poked and prodded with needles during my biopsy operation. I noticed today that this is calming down. I have two dots on my forehead form where I had the metal head frame used to keep my head in place during my biopsy. My sister said that I am growing devil horns and my Mum said that a vampire with a very wide jaw bit me in the wrong place! Thankfully the two dots are starting to go, also a bit of make-up does the job too.

Thank you very much to everyone who has sent me very kind Facebook and Twitter comments/messages, they really cheer me up. Thank you also to those who have been spreading the word about my blog. I will posting a post after this one which will tell you the best way to spread the word (hopefully it will work!).

Danielle :)

Thursday, 20 June 2013

I'm Home (CLIC Sargent Home From Home) Part: 2

This is Part: 2 of my post called, ''I'm Home (CLIC Sargent Home From Home)'', as by doing one blog would be far too long. In this post it explains all about my biopsy surgery that I had at Frenchay Hospital, Bristol.

My surgery took place on Thursday 13th June 2013 (luckily it wasn't a Friday). The type of surgery that I had was called, Steriotactic Brain Biopsy. I knew that this surgery was very high risk, but in order to find out if there is any possible treatment to help with my symptoms and because the T3 MRI scan I had in Frenchay Hospital in March 2013 showed that my tumour is now currently active, the Doctors need to know exactly what type and grade of tumour I have. The problem with my tumour is that it is on top of my brain stem, right in the centre of my brain. My tumour is low grade, but it is stopping me from going to school full time, seeing my friends, doing things with my family and after school clubs and other activities. To take a biopsy of my tumour was extremily risky due to the location, it was a decision that I had to make whether or not I wanted to go ahead with a biopsy, I chose to go ahead. After numerous Multi Disciplinary Team Meetings (MDT), my consultant in Bristol, Mr. Pople, asked a Professor called, Professor Gill, to carry out the biopsy operation. Professor Gill specialises in deep brain stimulation for Parkinson's Disease and has carried out two biopsies in the same region that mine was in, my biopsy being the second. Prof Gill asked me the night before my surgery if I would agree to take part in a new procedure called Convection-enhanced delivery of carboplatin for brain stem glioma. This meant leaving a stent in my tumour connected to a catheter which then leads to my skull. This means that if my tumour requires chemotherapy, or if my tumour was to develop a cyst or infact because new treatments are being developed all the time and they are unable to treat my tumour straightaway, the could feed medicine or access my tumour much more easily rather than having to carry out the full operation all over again. I chose to go ahead and have the stent with the cathetar put in, as I know how risky the biospy operation was, so rather than having to do it again if needed to put the stent in, I might as well have it put in the first time. Prof Gill is a very clever man, he helped pioneer the computer system used for mapping my tumour.

Amazingly I had a very good sleep the night before, as it can be quite noisy on the ward with different machines beeping and patients including myself having observations done on a regular basis, sometimes every 15 minutes. It had been a busy day when I arrived into hospital on Wednesday 12th June 2013. Lots of Doctors and Nurses came to see me, asking different questions, taking my bloods and doing neurological testing on me, which I know like the back of my hand since I've had it done so many times. As I was going under general anaesthetic, I was not allowed to eat or drink anything from 12:00am onwards, although I was allowed a few sips of water at 3:00am. This is because if you do eat or drink it can interact with the anaesthetics and make you very poorly. Luckily my surgery was scheduled for 8:30am, so I wouldn't have to feel hungry for too long. I was also very nervous to even think about eating. When I woke up  around 7:30am on Thursday 13th June 2013, which was surgery day, I had a lovely shower as I used some of my new LUSH products, I absolutely love LUSH, their products smell so good especially when you are in hospital. I then got dressed into my ever so stylish theatre gown and theatre stockings, although I couldn't get one of the stockings on as I had a cannula in of my foot. The stockings prevent you from getting blood clots in your legs so its very important to wear these until you are up and about and are able to walk around. The anaesthetist called Claire came to see me on the morning of my surgery day. Claire went through a check list to make sure that I was OK to have anaesthetic, I told her that I get very nauseous after having anaesthetic and that I also have the world's worst veins. Claire was very understanding and when I woke up from surgery I didn't feel sick at all, this was because she put anti sickness medicine in my anaesthetic which helped a lot. I was worried that I was going to wake up when I was meant to be asleep under anaesthetic, this was because I was under anaesthetic for 5 hours, but Claire told me that she would be with me the whole time and 'top me up' with anaesthetic when needed. When the theatre porter came to collect me in my hospital bed from the ward, the Nurses on the ward went through a checklist to make sure that all the paper work was signed for and that I was the right patient. I was allowed to have my Mum with me the whole time, right up to the point when I fell asleep. My Mum or Dad have never been with me before when I've fallen asleep. they always had to go as soon as go to the anaesthetists room, which makes it very scary when you are by yourself, especially when people are sticking needles in you and giving you medicine that you can't even pronounce the name of. I don't like to talk very much when I am nervous, and I don't like people talking to me, I like to concentrate on what is happening and block everything else out.

In the anaesthetists room there are lots of different kinds of machines and equipment, many of these are used to monitor you. You would think the room would be quite a big room as you have to fit a hospital bed in there with the patient, the anaesthetist, a couple of other Doctors, all the equipment and in my case my Mum as well, but no, the rooms are very small and tight. The anaesthetists room has a door which enters into the operating theatre.

Once I had been put to sleep using my cannula which doesn't take very long, I had to be taken down the hospital corridor to have a T3 MRI scan of my brain. I then had to be pushed back to theatre to have a heavy metal frame attached to my skull by 4 small screws which went through my skull. I then had to go to the CT scanner to have another type of scan. After this, Prof Gill and the radiologist used the computer system that Prof Gill helped to pioneer, to map my tumour in my brain, so that they could see all the vital veins and arteries. Whilst this was happening I was still asleep for the whole time. It can take anything from 2 - 4 hours to work out the best way to approach my tumour. I was told that if they were not completely confident that they could not reach my tumour, the operation would not happen. Once the images of the MRI and CT scans had been looked at, and the computer system together with the team decide which way to enter my brain from, the biopsy then takes place.  I had to have a metal frame attached to my head so it could attach to another frame, in order to keep my head in place. The frame also had a number of holes across the top, a bit like a halo, this is where they make the first incision into my scalp, then drill a small hole through my skull, then a small tube the same thickness as a dry spaghetti string is carefully fed down into the centre of my brain using the computer images they took earlier while I was under anaesthetic, these images would help Prof Gill guide the tube and avoid touching vital parts of my brain. At the end of the catheter there is a small device which took a sample of my tumour, the sample was only the size of a grain or rice. The pathologist was then given the sample of my tumour to take a quick look at it under the microscope, he or she is able to tell whether the sample of my tumour is good enough to be used to get a proper diagnosis. The biopsy is then taken away and sliced into many bits, so that different tests can be carried out. Sometimes the samples are sent to different pathologists to get their opinion, sometimes they are even sent to America if needed.

After the surgery was done, I woke up in the recovery room, although I was extremely thirsty I wasn't allowed to drink anything straight away incase I was sick. I felt very relieved when I woke up that the surgery was finished. Prof Gill told me that it went very well and he was happy with how I was. My Mum, Dad and Sister came to see me in recovery so I didn't feel like I was by myself. I had more observations done and I soon realised when I was asleep the Doctors had put more canals in me my veins. I had one in either hand, the original one in my foot and a monitor that went into my artery in my left wrist.

After an hour or two I was taken back up to the ward where I was staying called the Barbara Russell Unit, I had to stay in a High Dependency Unit on the ward overnight, due to the type of surgery that I had, so that the Nurses could keep a close eye on me.

Danielle :)