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 :)

Sunday, 16 June 2013

I'm Home (CLIC Sargent Home From Home) Part: 1

There is quite a bit to catch up on as I wasn't feeling well enough throughout my stay at Frenchay Hospital to write a proper blog, only a few short messages and posts on Facebook and Twitter; so I've decided to write this blog in two parts.

I arrived at hospital around 1pm on Wednesday 12th June 2013, the staff on the Barbara Russell Unit were absolutely amazing and were very kind. This Unit is for paediatric burns, neurosurgery and orthopaedic patients. I definitely prefer staying on a children's neurosurgery ward rather than an adults neurosurgery ward, because it's not as scary and I wasn't the youngest patient there. They have play specialists and despite everyone being ill, some very serious, the atmosphere was relaxed and calming; most of the time it didn't even feel like I was in hospital.

My Consultant's Registrar called, Neil came to see me when I arrived into hospital. Neil explained everything that was going to happen and took his time to make sure that I understood the procedure, especially as I have to sign my own consent form and have done so since I was first diagnosed when I was 14 years old. He allowed my family and I to ask as many questions as we liked. Later that evening Professor Gill, who done the biopsy operation came and spoke to my Mum and I, as my Dad and sister Rebecca went back to the CLIC Sargent house. Professor Gill carried out the operation but my consultant is Mr. Pople, this is because Professor Gill pioneered this procedure and they were able to get him to do the biopsy operation.

On my first night in hospital, I needed a cannula put in to one of my veins to take bloods and so that the next morning, which was operation day, they could give me anaesthetic straight away without worrying about finding a vein. I've got the world's worst veins, it even says this in my hospital notes, that's how bad it is, the anaesthetists in the past have had to use ultra sound to find my veins, and even this hasn't always worked. The Nurse practitioner found a vein the first time which was amazing for me as it meant I wasn't poked and prodded around too much, where I end up looking and feeling like a pin cushion.

I had a nice surprise on my first night when my Nurse was speaking to me and said that if I needed anything just to let her know, so I presumed that she meant if I needed any of the usual things such as medicine or a drink of water, but no, she told me that I could have a milkshake that she would make for me! Well of course I was definitely not going to turn down a milkshake, especially as I knew my appetite would not be the same for the next few days after surgery which it hasn't, due to being under anaesthetic for so long. I must say, it was the tastiest chocolate milkshake ever.

I found out that the restaurant at Frenchay Hospital is called Redwood, the same name as my school's restaurant in N. Ireland. I thought that this was very spooky and must be a sign of something.

There is a fantastic charity that have only started up in January, they are called Little Angels Cakes. They organise cakes to be made and delivered for sick children by their volunteer bakers across the UK. I decided instead of having my cake just for my family and I, I wanted to have it when I was in hospital to share with the staff, parents and children on the unit where I was staying. I chose the theme of the cake which was a Pirate and Mermaid theme, Little Angels Cakes asked one of their brilliant volunteer bakers from, Louise's Cakeaway to bake and decorate the cake. All the staff, children, parents and myself on the unit absolutely loved the cake which looked too good to eat!

Thank you very much to everyone who has been reading my blog and sharing it, I can't believe it has got over 1000 views already. Thank you as well for letting people know about my Facebook and Twitter pages, as well as my online shop, please keep sharing.

Danielle :)

Wednesday, 12 June 2013

We've Arrived

My family and I have arrived here in Bristol. My Mum, sister and I got here early yesterday morning and my Dad arrived that night. My Dad travelled by ferry as we need the car to run back and forth from the hospital and CLIC Sargent house, this is where we will be staying while we're over here. It was also a beautiful opportunity for my sister and I to bring all our make-up and clothes, as I say, ''It's always good to be prepared!''

Our flight was very smooth, although I had bad, what felt like high and low pressure in my head, which really unpleasant; luckily it calmed down once we landed safely. We have settled into the CLIC Sargent house. It is a lovely big old house with lots of space, I think it was built around the Victorian times. Rebecca said that she feels like she's on the set of Eastenders, as there is a square at the front of the house (back home we live in the middle of a field surrounded by cows). Yesterday my Mum, sister and I had a walk around the area where we're staying, we got some food to eat and went out for some lunch. Although, when we came back to the CLIC Sargent house, I was in extreme pain, my head was extremely painful and it felt like I had pressure again, my eyes were also in pain and I couldn't see properly. When I say I couldn't see properly, it's not like I can't see anything or everything is blurry, it feels like my eyes are moving but they can't keep up with what they are seeing which makes me feel disorientated, so it was an early night for me last night for some much needed rest. I'm feeling much better today.

I go into Frenchay Hospital today (12th June 2013), I've to be there by 12pm. In a way I'm looking forward to going in, as I've never been on a children's ward before, so I'm curious to find out what it's like. In N. Ireland I've always been on an adults ward as you are classed as an adult when you're 14+ years old. With being on an adults neurosurgery ward, it can be very scary and frightening at times, not only because of the noises but the fact it's a different environment. Some of the adults who come in may have brain injury, therefore they maybe confused and scared themselves. My room on the ward was usually beside the mens toilets, this meant that I sometimes had unexpected visitors looking for the the loo. For Bristol I've bought lots of lovely new PJ's, spotty ones, stripy ones, Disney ones... as well as slippers with cute butterflies on them and buttons. I've also bought with me all my LUSH products which I couldn't live without. They all smell so sweet and fresh, I find that when I'm in hospital my skin can get a bit dry, so I made sure that the LUSH products I bought moisturise your skin, and also smell good.

If you haven't already, please watch my introduction video that I made myself, with the help of my Mum. It's the post before this one. Also, if you haven't signed up to my blog, please do so that you know when I post a new blog and you can keep up to date with my journey while I'm here in Bristol. To do this, scroll to the very bottom of this web page, on the bottom left, there should be a bar/tab where you can enter your email address, do this and you should get an email to let you know when I've posted something new.

Also, don't forget to share my blog which may help others.

Danielle :)

Tuesday, 11 June 2013