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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

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