Tuesday, 21 January 2014

I'm Home

It's really nice being home, in my own bed, surrounded by my family and friends, and of course my pug called Harry who I missed ever so much. After our very long and tiring journey by car from Bristol to Belfast, it was lovely to be home. As someone told me, "you know you're home when you've got a packet of Tayto crisps and a cup of Nambarrie tea".

Our journey to N. Ireland was very long (actually, it was very very long). It took Mum and I twelve hours before we arrived home. We set off on our journey on Saturday (11/01/2014) from CLIC House. Our car was packed ever so tightly with all our things. We were bringing more home with us than when we came over to Bristol, and the car was already tightly packed then. From CLIC House, we drove to Holyhead (in Wales not England, remembered that from when Mum and I were traveling to Bristol), then from Holyhead we took the ferry to Dublin and then from Dublin we drove to our home in N. Ireland. The ferry was the longest part of the journey, but it felt the quickest. Unlike when we were traveling to Bristol, this time we travelled on a bigger ferry (as the weather had been very bad all week and we didn't want to risk it) which had cabins on board. Mum and I booked a cabin, so I slept the whole journey and the time just 'sailed' by. 

On the Thursday of the week we left to go home, I met with my wonderful neurosurgeon at Frenchay Hospital, Bristol. This appointment was my post op review appointment since having the ETV operation, only a couple of weeks before I started IMRT radiotherapy. The operation was carried out by another wonderful surgeon in Frenchay, who was on call the day I was admitted into hospital with hydrocephalus. My neurosurgeon said that my eyes looked so much brighter and not so 'sticky out' as I would say. I was very eager to find out if I could have my horrible shunt taken out, as it's been tied off so it doesn't work anymore and the ETV is doing all the work. My neurosurgeon said that I could have my shunt taken out. This was the best Christmas present ever, although I have to wait until the summer to let everything settle down from the radiotherapy. The operation, although very easy, will be carried out in Bristol. I'm sure my family and I, or if it will just be my Mum and I who go over, will explore parts of Bristol we didn't get to visit the last few times we've been.

The day after my appointment with my neurosurgeon, I met with my oncologist, like I did every Friday. My oncologist was pleased with how I was doing, although I had to start steroids on the Tuesday as my symptoms from radiotherapy were very bad. I was suffering from severe headache, eye pain and pain down the right hand side of my face. These symptoms aren't new, they just increased due to immediate side effects of radiotherapy. I was taking a bigger dose of steroids than what I've previously been on, which really helped.

The weekend before I came home and that week, I was not sleeping properly. I found it so hard to get to sleep, partly because of the steroids as they affect my sleep pattern, and partly because I was just too excited to get home.  

On Tuesday 7th January 2014, my lovely oncologist arranged for me to do a couple of hours of work experience in the radiotherapy department, as I had told her that I was interested in becoming a therapeutic radiographer. It was very interesting, finding out about the job and whats involved. I didn't realise how many people took part in planning and organising a patients treatment plan. I also didn't realise how big the radiotherapy department was, as you only see the waiting area and room where you're given the radiotherapy. I found the planning of a patient's treatment really interesting, as well as actually giving the patient radiotherapy. I've also thought about doing psychology or being a social worker with children and young people with cancer as a career. I enjoyed talking with the other children at the CLIC Sargent house and helped them do some arts and crafts. I'm still not sure which career I would like to do just yet, but whilst I'm not at school for the rest of the school year, I plan to find out more about them.

I finished six weeks of IMRT radiotherapy on Thursday 9th January 2013. The last week of treatment felt the longest, but the rest of the time it went really fast. As I'd finished radiotherapy I got to take my mask home with me, as each mask is made individually for each patient and can't be used again. The reason why I had to wear a mask for radiotherapy, was to keep my head in place during treatment and the mask has markings on it so that the radiographers knew where to position each beam. There were a total of five beams targeting my tumour. I've been thinking of writing a blog post about all the things that can be done with a radiotherapy mask, such as, using it as a Halloween costume, flower pot and more.

My IMRT radiotherapy mask.

I have an MRI scan of my brain scheduled for April 2014. This scan will hopefully show that my tumour is behaving itself (you hear that Annie, behave). The IMRT radiotherapy I had is to delay the growth of my tumour for a few more years than if it was left untreated. The radiotherapy won't get rid of my tumour completely, but hopefully will reduce its size and density so that some of my vision problems and pain associated with my eyes will ease. The radiotherapy will also give me more time before my tumour decides to grow again, but we're hoping it won't.

Since I was diagnosed with Annie (brain tumour) and Heidi (hydrocephalus) (5th July 2011), I haven't been able to exercise properly, until now. On Sunday my family and I went for a short walk together with my pug, Harry. I loved it so much, just doing something 'normal' felt so good. Since having the ETV operation (the operation I had a couple of weeks just before radiotherapy) and radiotherapy, I still have a constant headache, vision problems and sore eyes, but it's now a lot more manageable.

A walk with my family and Harry (pug) at
The Argory, Co. Armagh.

Over the last few days I've been feeling quite 'radioactive'. It's very strange, I have a funny taste in my mouth which tastes like metal and tin and is quite unpleasant. One day I felt like an explosion went off inside me full of 'radioactivityness' (the only word I can think of to describe it). It must be from where the excess radiotherapy is trying to get out of my system, although the radiotherapy will always be inside me. I'm not quite sure really why this has been happening, but that was: "Danielle's Theory Of Why She Has A Metal Taste In Her Mouth And Felt Like An Explosion Went Off Inside Her Since Having IMRT Radiotherapy". My hair hasn't been falling out as much since I've finished radiotherapy, it's a lot thinner than what it was before I began treatment, as I have a few bald patches and thinning spots. I'm lucky to have had very thick hair, as you really wouldn't know if you didn't know me. I must say, I quite like the thickness that it is now, as it's a lot easier to wash, dry and style.

Watch out for my next post about, 'Where Do I Go From Here'; all I know is I'm not going to be dwelling on the past, but looking forward to the future. #StayStrongKeepPositiveAlways

Danielle X

Sunday, 5 January 2014

"Merry CLICmas"

My family and I had a wonderful Christmas. Despite being away from home and missing Harry our pug very much, not forgetting our cat, Rosie and two fish, Susy and Spotty. Sadly my other two fish died, Pop-Eye and Pebbles (I was home when Pop-Eye died and got Dad to bury him in the garden. My sister wasn't so kind and while I've been in Bristol, Pebbles died which she flushed down the loo).

Just before Christmas my anti-sickness medicine was changed. The original one was no longer working as well, or for as long since I started radiotherapy. I'm now on a new anti-sickness medicine called, domperidone (just incase you were wondering). The new anti-sickness medicine works so quickly and lasts a lot longer. In fact, I took some just before I started writing this blog post, as I was feeling a bit nauseous and it's already helped.

If you live in the west side of England, you may have seen that my Mum and I were featured in the video clip about CLIC Sargent being one of the six charities chosen to be part of Text Santa last year. My Mum and I were asked on the morning of the recording, if we would mind taking part in the video. We both agreed to do it, as CLIC have been a huge part of my journey, in N. Ireland as well as Bristol. We both quickly dashed around our room at CLIC House, shoving on some clothes, brushing our hair and only having enough time to put a little bit of make-up on. It was lovely to be apart of it, as CLIC Sargent are an amazing charity and offer amazing support to children and families.

On 21/12/2013, my Dad and sister, Rebecca came over from N. Ireland to stay with my Mum and I at the CLIC Sargent house during the Christmas period. My Granny and Uncle also came on the same date from Lincolnshire, to stay for the weekend. While my Granny and Uncle were over, we went to Bristol's German Christmas Market on the Saturday. On Sunday we went to The Town House in Bristol for Sunday Lunch. It was really nice to see my family and be together.

My sister, Rebecca and I at
Bristol's Gerrnan Christmas Market.

On Christmas Eve I had radiotherapy at 8:15 in the morning (I know very early indeed). It was an early start but I was glad to have my treatment over and done with. That evening my Mum, Dad, sister and I went to the cinema and out for dinner too. This has been a family tradition of ours since I can remember. We always see a kids Christmas movie, this year it was Frozen. I thought it was a brilliant film and it's a bit like a musical.

Today Is Day 22 Of IMRT Radiotherapy. 

On Christmas Day, my family and I opened our presents and had breakfast at CLIC House. My sister and I loved all our presents. Every year my sister and I get a board game (another tradition of ours), this year it was electronic Monopoly, my favourite. My sister and I also got a charm each for our charm bracelets. Both of our charms have each others finger print and name on them. We love them very much and Mum got them for us from Button and Bean. We were very lucky to be treated to Christmas dinner and an over night stay at the local Marriott Hotel, by my very kind and generous Granny. The Christmas dinner was delicious, we were stuffed afterwards. On Boxing Day we had afternoon tea at the hotel. It was also very delicious, with different sandwiches, tea (I had Earl Grey, my favourite), scones and deserts. We definitely didn't go hungry over Christmas.

Mine and my sisters
fingerprint charms.

Over the Christmas holidays, my family and I went to London for a night stay. Thank you to Samuel's Children Charity for organising this. We had such a brilliant time, even though it was only for a very short time it was nice to get away. I've always wanted to go to a LUSH Spa, but there aren't any in N. Ireland, only a handful in England. Samuel's Children Charity treated my Mum and I to a beauty treatment each at a LUSH Spa in London. I had a facial and my Mum had a foot massage. We both enjoyed our treatments and were very relaxed after. The next day my Dad, sister and I went to see the Chelsea v Liverpool match. My Dad loves Chelsea, so my Mum got him tickets to see them play for his Christmas present. When he opened the envelope, I wrote a note to say that he had got the tickets. He thought it was a joke at first, but my Mum and I explained that we had to pick the tickets up from the Chelsea stadium. Dad was so excited it was brilliant to see his surprised face.

My sister, Dad and I at the
Chelsea v Liverpool match.

For New Years we set off again after my radiotherapy in the morning, visiting friends in Northampton. It was so nice to them, as we hadn't seen each other in a while. We went to our friends sisters house for New Years Eve which was lovely. I was very tired, but I got New Years Day off to rest up. While in Northamptom, my Uncle and cousin, Sarah, traveled over to join us for lunch on New Years Day. It was great to see my cousin, she has grown so much since we last saw her over the summer holidays. My family and I travelled back to Bristol from Northampton on 02/01/2014, as I had radiotherapy that day. We had been doing a lot of travelling and going to different places over the Christmas period, which has been great because although its been hard because of the side effects of treatment, it has meant that the time has gone quickly and I will be able to remember lots of good times also. 

Suzanne Shaw, a patron of The Brain Tumour Charity, organised for my family and I to watch her perform in the pantomime, Cinderella at the Hippodrome, Bristol. Suzanne and all the actors, actresses and dancers, performed very well. Suzanne invited my family and I to meet her back stage, once the show was over. It was so nice to meet her and thank her in person for organising this treat for us,  I also got to meet her cutie pie puppy. Another family tradition of ours it to go to the pantomime during the Christmas period, so I really appreciated this treat.

Suzanne Shaw (wearing a #TeamDanielle wristband)
with her puppy and I.

Due to the side effects of radiotherapy, my ears have been very sore recently, as well as my right eye and down the right hand side of my face. I've also been feeling nauseous and tired too. Before I started radiotherapy I would always have sore eyes and pain on my face, so this was nothing new, although it has been particularly bad yesterday and today. I met with my oncologists on Friday, as I do every Friday. I was told that the worst weeks of symptoms will be my last week of treatment (this coming Monday) and the week after treatment is finished. I have four more fractions (sessions) to go of radiotherapy and an appointment with my oncologist on Friday, then I'm finished and back home to N. Ireland on Saturday. I can't wait to get home and see all my family and friends.

This coming week I'm meeting with my neurosurgeon in Bristol, for a follow up appointment since having the ETV operation a couple of weeks before I started IMRT radiotherapy. I'm hoping if the ETV is working (which I think it is) I can get my shunt taken out sometime. I've never liked the idea of having a shunt, a long tube running from my head to my abdomen doesn't sound nice at all. When it was working (which it doesn't anymore as it's been tied off, so the ETV can do all the work), it makes funny noises like a bicycle chain spinning around when you cycle down a hill without peddling. I can also feel the shunt through my skin behind my ear and on top of my head, which is so unpleasant.

My hair is thinning and itchy due to radiotherapy and there's a few bald patches too. Luckily you can't see any of this as my hair was really thick before, all you can see is some spiky bits of hair from where I've had my brain operations for my hydrocephalus. The good thing about it being thinner, is that it's so much easier to handle than when it was thick, such as drying my hair is a lot quicker.

My hair from radiotherapy.

Danielle X