The end of 2016

As we're coming to the end of this year I've been reflecting on everything that has happened and also thinking about next year. To be honest, this year has mostly been rubbish, since being diagnosed everything has changed(have to point out that Everything Has Changed is a Taylor Swift  ft Ed Sheeran song that slays lol) anyway, things became so different and it was hard to adjust to these changes but with the help of many amazing people I have managed, I've also been thinking about what this year has taught me and how I'm going to use these lessons from 2016 to help me make 2017 amazing, here are some things I have learnt:

Be grateful- be grateful for what you've got,  life is unpredictable and you don't know what's going to happen next, appreciate all that you have as you never know when it could be taken away from you, most people would do anything to have what others have.
Slow and steady wins the race- I've learnt that I can't rush things, especially my physio, it will come in time I just have to keep working hard, it's going to take as long as it does and it could be years but I've accepted that,  it's better to do things properly, even though it's hard to watch everyone around me walking and having the use of both hands, I have to persevere and know that things will happen in time. 
Tough times reveal true colours-  this tough time has shown me the true colours of many people, I've been surprised by many people's ignorance but also surprised by others' kindness. 

Complaining is pointless- if I spent all day complaining about not being able to walk it would be a waste of time because complaining about it won't make it change , I have to accept it and just get on with it and put the energy that I would use to complain into more important things, such as physio. I try my hardest not to complain as I think there's no point, sometimes it gets too much but I'm not going to complain all the time, I'm going through this but I try my hardest not to sit moaning about it 24/7 as it can be annoying. Don't waste your time and energy complaining about trivial stuff, use it wisely 

I have learned a lot this year, I am grateful for that even though the way I've had to learn these lessons has been awful but I think it's made me a better person and helped me to really appreciate life, I just hope that I can use my story to try and teach others these lessons. 

2017 will be a chance for me to have a fresh start and the lessons I've learned from this year will really help me next year to live life to the fullest and be appreciative even if I am in a bad situation, there's always someone worse off than you. 

Hope anyone who reads this has had a wonderful Christmas and haves a very Happy & Healthy New Year 

Christmas & New Year

This time of year has always been one of my favourite times, I love the festivities, the decorations, the music and movies and the family time and time to chill and pretty much everything really, obviously this year will be different but we are still managing to keep it fun by making new ways to do things, for example usually every Christmas I'd be the first to wake up,run into my sisters room then we'd both go and wake my Mum up together but instead this year I think we're all sleeping in my room, we always find a way around things. Also I'm looking forward to starting a new year because it will be a fresh start and hopefully will be better than this year, this year has been full of ups and downs, obviously my life completely changed but the good times and many amazing people have kept me going, I think a fresh start will be good for me, just to forget about the past and concentrate on the future, my main focus of 2017 is going to be physio and to just be happy really, To anyone who is reading this have a very Merry  and a Happy New Year :) 

the beginning of my journey

I realised I hadn't really done a post about being diagnosed and how everything happened and what it was like and to be honest  I don't really like thinking about it as it was one of the most traumatic experiences ever but I wanted to write about it...

For a few weeks leading up to diagnosis I'd had flu like symptoms, it got quite bad so I didn't go into sixth form and stayed off for about a week or so, I never really had headaches before that like leading up to it, it was all very quick, so at this point I was complaining of flu like symptoms and excruciating headaches, we went to the doctors and after explaining what was wrong they thought that I had infected sinusitis, I was given antibiotics, when the course of antibiotics was over and I still wasn't better we went back to the doctors. The left side of my face had started to droop just before we got to the doctors and so when we got there Bell's palsy was queried, the doctor sent us to our local hospital, I had bloods taken and was on a drip with fluids  and they were still unsure of what was actually wrong, I was very photophobic (couldn't stand the bright lights) as my head was hurting too much with an awful headache, later on I had a CT scan and after, a doctor said he'd take us somewhere private to talk about the results, I thought to myself it's not going to be good but I just waited. They told me and Mum that the scan showed a lump on my brain- a brain tumour, me and Mum were both obviously in shock and I remember crying a lot but Mum was there to comfort me as she has been every single day. We stayed overnight in that hospital but at about 4am/5am we were blue lighted (taken in an ambulance) up to the Royal Victoria Infirmary because it is a centre of excellence and had everything that I needed there so it was where I needed to be. It was a bit of a drive but I just tried to sleep and take my mind off it all, I went straight in for an MRI scan when we got to the RVI.. it was awful, I was in there an hour and a half and it was so scary as it was the first time I had been in one and I hadn't really had chance to prepare myself as it was all so quick. Mum sat at the end of the bed and held my feet which comforted me. The staff knew how scared and upset we were and they were there for us and really helped us. I still couldn't stand the bright lights. We stayed on the neurology ward and over the next few days there was a lot of talk about surgery and I was told I needed to have it as soon as possible, I met the neurological surgeon and my consultant oncologist who talked us through everything and couldn't have been more helpful, I had a few days on the neurology ward and I was trying to come to terms with everything and prepare myself for surgery, I had always had a fear of cannulas and ever having to have an operation so I was extremely scared and worried. But the day came and I did it, and that's how my journey with cancer and Darren Lee (tumour) started 

Appreciate Life

I was struggling to think of what to do my next blog post on and I had an idea but it may be a bit jumbled as I know what I want to say but it's hard trying to put it all into words, basically I just want to get a message across to appreciate all that you have and be grateful as you never know when things may change, I'm not going to lie before being diagnosed I probably didn't appreciate as much as I should've, and now things have changed for me I realise how important it is to be appreciative as you never know what's going to happen and things may change when you least expect it, So appreciate everything even the smallest and simplest things, things that I miss may seem so small and simple to a lot of people but they actually aren't, I miss being able to cut my food up by myself, obviously I can still eat my food as I thankfully still have the use of my right hand(and I guess it's a good thing that I was right handed anyway) you may take something as simple and little as cutting up your dinner for granted but it's actually not a little thing. I miss being able to walk my dogs, something that many people do every day and don't think twice about. So I'm trying to encourage people to just think now about what you have and how you are grateful for it because trust me if things changed for you which they could at any point you would get a  huge shock. Another thing that annoys me is complaining, I do complain but I try not to as I just think there's no point, I have to accept what's happened and just get on with it, I could complain constantly about the fact that I can't walk but I don't. When I hear people complaining now especially about trivial things I cant help but get annoyed, as you waste your breath on complaining there's someone out there fighting for their breath and there is another person out there taking their last breath, Yes everybody has ups and downs but that's life- just appreciate what you have in the here and now as you don't know what's around the corner and there are many people out there who would do anything to have what some people have, so the message of this is just to try and show people how important it is to be appreciative and grateful of what you have.   


"life is a gift, never take it for granted" 

Finishing Chemo

On November 29th 2016 my 6 months of intense chemo finally finished, I'm glad for it to be over as I hate the side effects of chemo, it's not nice when the thing that's meant to make you better can actually make you feel worse, but you know you have to endure it anyway as the chemo will help you. I think when you finish chemo people think oh that's it, it's not. Just because I've finished treatment doesn't mean that I'm better and also it doesn't mean that the effects of chemo just stop there, hopefully they won't be as bad but  they can still make you feel rubbish, so what now? Well because of the way my mobility was affected, I've still got a lot of rehabilitation and working hard with physio ahead of me- that's going to be my main focus now. Also, I will have an MRI scan in a couple of weeks to check what's going on in my head after chemo, this is very nerve racking for me and my Mum just like every scan is, but the amazing staff who look after me help us through it all. It's worrying as you don't know what the outcome is going to be and the scan itself is scary enough, the massive machine and the noisiness of it and being all alone in the machine, although my Mum always sits by my feet which is helpful because  I can see her, also I take a CD for them to play for me as they can put headphones on me, this helps me to chill out a bit but it's very hard to hear the music over the loudness of the machine, that thing is veryyyyy noisy (and annoying! -Especially when you're trying to listen to the music and all you can hear is the noises of the machine, I prefer Justin Bieber to you machine thing!) I guess I don't know what comes after that as it all depends on the outcome of the scan, I've just got to keep hoping for the best and try not to worry about anything although it can be very hard, but I've got a lot of support and I know I'll be fine.  Just hoping for the best now and we'll see how things turn out. 

Nordoff Robbins music therapy

As a result of surgery I wasn't only left partially paralysed but my voice was affected also because of nerve damage, when I came out of surgery my voice was very monotone and had no tone or pitch, this really hit me hard as I have always loved singing and aspired to be a singer and when I sang after surgery I sounded strange - it was heartbreaking. I did music therapy in the hospital with an amazing Nordoff Robbins music therapist and this helped me to regain a bit of my singing voice and helped me to be able to hit different notes again, I couldn't bear for anyone except for Bev(my fab music therapist) to hear me sing, I knew Bev understood me and wouldn't judge me for how I sounded, when I sang with her I felt confident and it was just amazing to be back singing and doing something I loved again, it made me so happy and it was something for me to focus on and to look forward to whilst having treatment. I can't thank Nordoff Robbins enough for being there and helping me during my stay in the hospital whilst I was receiving lots of treatment. Its not just the singing that has helped me, music is my escape, when I'm feeling down music never fails to cheer me up, especially if it's one of my fave artists- put on a Justin Bieber orTaylor Swift song and I'll immediately have a smiley (oops I was thinking of Miley haha) on my face and start singing my heart out, sometimes it helps to just listen to the music and lose yourself in the music but singing along with it I find can be very helpful to just get lost in a song, music really can change lives. Please watch and share this video of my story to help raise awareness and money, donate if you can thankyou! https://www.youtube.com/watch?v=q1GUK9Ry1FI

More chemo side effects

Unfortunately another side effect of chemo is that it can change your taste, so at the moment I've gone off a lot of things that I used to love, I'll eat something and say it tastes weird and I'm finding it very hard to decide what I want because I never know how things will taste. For example, if you knew me before you'll know that I absolutely loved chocolate but now I don't eat it anymore as it tastes a bit like it's burnt, I hate this side effect because it restricts what I eat and makes it difficult fir us to know what food to buy or cook because something I used to love last year might taste completely different now, I'm hoping that when I finish chemo I will start to get back onto foods that I have gone off as it can be a pain when I'm the only one who doesn't like something or If We buy  something and I taste it and say no it tastes weird, just another annoying side effect of chemo 

Make A Wish

I already knew of make a wish before everything so when I was diagnosed I asked if I would be eligible for one and if So could I be put forward, someone from the hospital managed to sort it out for me but when I told people what I would like my wish to be they all thought I was crazy as it seemed a bit out of reach and far fetched as my wish was to meet Justin Bieber because I have loved and supported him since the beginning of his career and I've been to every tour of his and am just completely obsessed. 2 People from make a wish came to the house and after sharing all the Bieber facts I know and telling them about my love for Justin it was decided that that had to be my wish! For a while we didn't hear anything about it and then one day I got a phone call telling me the most amazing news ever that Justin's management had told make a wish a date that I could meet Justin, this was the best news ever and I cried for hours after hearing the news as I've been a belieber since the beginning and justin has helped me through some tough times especially these past few months and it was just the most amazing news to be told ever and I couldn't believe it was finally happening, 

On  Wednesday 26th October my wish was granted, I was extremely excited and couldn't believe it was actually happening, we had stayed in a hotel the night before  so I had some chill time so I wasn't too tired. We also did a bit of shopping and on Wednesday morning I had a makeover all ready for Justin and make a wish gave us expenses for food & drink so we had lunch out - I refused to have garlic as I wanted to smell good for Justin! We then went back to the hotel and I had a little rest so I wasn't too tired for the exciting night ahead, we rolled (I don't say walk I say roll) to the arena where we met the lovely make a wish girl and I was very excited! Sammi-Jo (the make a wish rep) rang someone and they told us to wait in the box office and they'd come to get us, after waiting for a while a lovely woman came down and said that she would send someone else down for us, he (Rhy) came to see us and explained that we would probably be meeting Justin after the show, so Rhy took us to our seats and said he'd come for us just before the last song then left us to it, we got some merchandise and then watched the show, which was amazing!! Justin's concerts just get better every time and he always puts on an amazing show! It got to the last song which was the encore, Rhy came for us and said he'd take us nearer to the front to watch the last one then we'd go backstage, the last song was Sorry and it was fab, I sang and danced my heart out! After that, we got taken to a room and told that Justin would be coming soon

After a few minutes the door opened and we heard this cute Canadian accent say hey and someone turned my wheelchair around and he was there, I was freaking out inside but managed to stay as calm as possible, even when he told me that I have nice eyebrows (to which I responded "you have a nice face") Justin was so calming and lovely that I just managed to chill although I did ask if I could touch him to check he was real and he held my hand (OMG) I gave Justin a present that I'd made for him(a scrapbook showing how I've be been there from the beginning and how he's been there for me during this tough time. He told my mum that he'd read every single page. He gave me the biggest and best hug ever and we chatted for a little while and we were asking each other questions, he was so lovely and caring, I knew he'd be lovely anyway I've always said it when people said to me I hope he's nice and I said I know he will be! No matter what the press say about him I've always seen the real him he's just a normal guy who's absolutely lovely and so kind and caring, he even gave me a bag full of merchandise! And he signed a few things for me which was fab, When he left the room I was very sad and now that it's over I've been crying and saying I just want to relive it all but I know that can't happen but I've got the memory forever..and the fab pictures! I've framed one of the pictures and it's up in my living room which is still my bedroom so  I can look at it all the time! I had the most amazing time and it was the best day of my life 

A massive thankyou to Make A Wish for putting lots of hard work into  making my wish amazing and the biggest thankyou ever to Justin my love, for granting my wish and being the most amazing person ever and for always being there, Justin has got me through this and I was the happiest girl ever on Wednesday and can't thank him enough! From laying on the radiotherapy table with a picture of Justin whilst listening to his music everyday for 6 weeks, to actually finally meeting him!!! Much love for the Biebs 💜💜💜

me &  the love of my life 

Neuroplasticity

Neuroplasticity is the skill that the brain has to be able to change itself by creating new neural connections. It enables neurons in the brain to counteract for disease and injury and alter their reaction to new circumstances or changes in environment. My brain will need to use this skill and create new connections for my left side. 

Doing physio  helps this as it will send messages to my brain that my left side is doing something and is learning new ways to do it, I'm doing physio everyday, a few times a week with physiotherapists and me and Mum do it everyday as even simple things like going to the toilet and getting in the bath is physio because of the transfers, the brain will eventually create the new ways that are needed in order to be able to get my left side back, I know that this will take a long time but I have to be patient and know that I will get there as long as I keep up my hard work doing physio, this is the hardest thing for me as I grieve the loss of my left side but knowing that I will get there one day helps and motivates me even more for physio.

Double Vision

I realised I hadn't written about my double vision and why I have to wear glasses now as I didn't before being diagnosed, As the tumour was on the right side of my brain, I have double vision in my right eye as the eyes don't do the right controlling left crossover, I have been to opthormology and had tests and they have stuck something called a prism on the right side lense of my glasses and as if by magic, I don't see double with it and believe me this is miles better than looking like a pirate as for months I wore an eye patch over my right eye, the double vision is rarely here now and seems to come back when I'm very tired but wearing my glasses really helps, when my double vision was really bad I said to my Mum that she had 4 eye bags instead of 2 (she didn't appreciate this lol) This is just another thing to add to my list of problems, but at least we found some cool glasses that I don't mind wearing and it can be resolved by wearing the prism. 

Cancer In the Media

Something that I find annoying is the way that cancer/the life of a cancer patient is portrayed in the media, it tends to be shown in a completely different way  to how it actually is in real life, this is quite annoying  as if it's  shown unrealistically this means that people may believe that how it is shown in books/films/tv shows is what it is actually like in real life when it really isn't. I think that the media needs to illustrate realistically the life of a cancer patient because a lot of people don't seem to understand how hard it actually is, There are many things that need to be shown from  not leaving the house because of neutropenia or because you don't want to be seen in a wheelchair to the constant fatigue and sickness that nobody sees or understands. I want to be able to show people this and explain so others can kind of understand as I feel like people need to be taught. 

Hemiparesis

Something I think that people can find hard to understand is my left sided hemiparesis, it is basically exactly like having a stroke, my whole left side is weak and I'm unable to do things like I used to for example I can't walk and am restricted to a bed or a wheelchair, I can only use my right hand to do things and I'm just completely different to how I was before, I never expected this and it was such a shock after surgery but I'm building my strength up and slowly but surely getting my left side back. It is going to take a long time and I will have to work extremely hard but I'm determined to be back on my feet and using my left arm as soon as possible so physio is my main focus and I work very hard as all I want is to be able to do things normally again. 

On my mind...

Recently I've had something on my mind and wanted to express myself. With the teenage cancer trust I do get some great opportunities but when people say I'm lucky for this it really bothers me, I only do really good things to try and balance out the really bad things that I go through and have experienced. I think if I didn't have these things to look forward to then I'd definitely struggle a lot more, especially psychologically. People may know of what I am going through but they don't know really, no one else sees everything that happens and knows everything that I go through

Music therapy

Music/ singing has always been a big part of my life, but in the past few months it has really helped me, especially the music therapy. Whilst in hospital I did music therapy with an amazing music therapist, this was very helpful during my stay in the hospital as it gave me a focus and I had something fun to do whilst feeling rubbish from treatment. After surgery, my voice changed as there was nerve damage- another cruel blow, but with the help of the music therapist I am working on retraining my voice. Nordoff Robbins is a great music therapy charity and their work is amazing, I can't thank them enough for helping me, please do all you can to support them. 

Baby steps

Learning to walk again isn't as simple as you may think, I want to run before I can walk because I just want to be able to do everything now and get my life back but unfortunately that's not possible, we have to do things slowly and take all the little things into consideration, there are many important things that I need to think about,  so even when I feel like the physio is nagging me I've got to persevere and think of every little thing, such as my posture as having a strong core is key to standing/walking and also doing everything slowly and not rushing because it doesn't help even though I'd like to have everything back asap. Well slow and steady wins the race right? 

I have a great relationship with my physios, twice a week I have physio from the community stroke rehab team and once or twice a week I have private physio at a specialist neurotherapy centre, both are amazing. I always annoy them every time I see them and plague them with questions such as when will I walk, so when I was saying  this to my private physio the other day she just said "this afternoon" I obviously didn't believe her but we did it! I took some of my very first steps, it felt amazing but it was kind of bittersweet as it made me realise just how long it is going to take to get back to being fully normal, because when I start to walk I will probably  most definitely need to use something to help like a stick, and still wear my foot splint to keep my foot in the right position, we are also working on my arm and hand but I have accepted that they take longer to come back as more of your brain is needed for the use of them. My physio isn't just in physio believe it or not, I do it daily with my Mum as she has been taught some things from the physios and this all helps towards my rehab. 



 Me and mum have a CAN do attitude, I may not be able to do things like I used to but we always find a way around it and this really helps. Not having my left side is what hurts me the most, sometimes when we're out in my wheelchair I look around at all the young people walking about and I can't help but think why isn't that me, but I know I will get there thanks to my amazing physios and my Mum.

Understanding

There has been a few incidents where I have been completely shocked by people's lack of understanding towards my situation, an incident yesterday shocked me at how insensitive some people can be, before this I didn't realise how uneducated and oblivious people can be but now I do, having cancer isn't just having the horrible disease, there is physical and mental effects that come along with it. Everyone's cancer is different, but from my perspective it is a lot harder physically, and if it wasn't for the cancer, I wouldn't have had to have surgery which then left me with the effects of a stroke and the part of my brain that knows how to walk being damaged, I struggle with this everyday as not being able to walk means being stuck in a hospital bed in my house, or a wheelchair, and annoying stuff like at 17 year old having to have a stairlift Installed (which I can't even use but hoping that will be sorted soon)The effects of my mobility are I find what affects my mental state most, I always say to my mum it's not having the cancer that makes me upset it's what the cancer has done, like if it wasn't for cancer I would still be walking around like a normal teenager and that is what gets to me the most. Also, the treatment needed for cancer affects my physicality, for example, the chemo usually fatigues me, which is really annoying as I can't do as well as I would like to in physio when tired from chemo. 

I feel that no one truly understands the trauma of being a cancer patient, obviously it's hard to understand if you're not in this situation yourself but I feel like people need to be educated more so that they are a little more understanding, no one really gets that sometimes it's not just the awful disease you have, it can affect other things such as mobility, no one realises that you have to put your life on hold  and a lot of what was possible for you to do before isn't possible anymore because of being tired from treatment or because the cancer has changed your  body. I think people get that cancer is one of the most horrible things for someone to ever have to go through but they don't truly understand, they don't understand how tired you are when during a cycle of chemo, how you lose your appetite because things taste different or you feel sick. No one understands how upsetting it is for people with cancer to watch everyone else's lives go on whilst theirs has been put on hold, you can no longer do  that look fun like going to a foreign country for a holiday, especially when you can't even get a sun tan in your own country because of treatment, it really gets to me how many people seem to be completely oblivious to it all, I feel that the media really need to show how bad life as a cancer patient is and teach people, so then when people see others in a wheelchair with a shaved head, they don't just stop and stare or complain that they are getting In the way, they glance and then realise how upsetting it must be to be stared at and think of what that person must be going through.

Teenage Cancer Trust

At the start of my journey with Darren Lee, not having met anyone going through the same as me I felt lonely. 

TCT social events relieved a lot of my anxiety, talking to other teens who were going through the same thing as me made it all seem a bit easier. Like I wasn't alone. I had support and plenty of people to talk to not only at the socials but I got to know other patients on my ward, creating new bonds and friendships.

Each TCT ward has its own teenage cancer trust youth worker, who is very supportive and arrange the socials. Helping in making life in the hospital a little easier and more like home. They are always there for you to talk to and hold activities, to help let go and have some fun every now and then. 

TCT is more than just a  charity but they become very close to you, being there to support you from the start to the finish with your journey with cancer, thank  you TCT ❤

Chemo side effects

I am currently on my second cycle of chemo out of the 6 months of it, this dose is  stronger than what I've had before, there are many side effects to chemo, such as tiredness and fatigue which is one of the main things I feel, this can be annoying for me as all I want to do is physio and when I'm tired, that can prevent how hard I can work. Also it can affect your taste so I go off a lot of foods or something tastes different to me than it should do, also another side effect I get is sickness, I just feel sickly and a bit ew whilst on chemo (ew was the only word I could think of to describe it) 

Positivity

Positivity

It's very hard to say positive when you're in  an extremely negative situation, I have kind of managed to stay positive most of the time but I have allowed myself to have down time as well and let myself just cry, which I would advise anyone in a bad situation to do as I think it really does help to let your feelings out sometimes and tell someone how you're feeling. A lot of things have helped me stay positive, such as family & friends but something that has helped is that someone told me to try and find a positive in every negative, for example, it's not ideal that I'm stuck in a hospital bed in my living room, but this means that my pets can jump on anytime for a cuddle. There are a few things that have been very hard to try and make positive, such as the fact I can't walk, I struggle with this every day and am always thinking about how I just want to walk but this all gives me more motivation for physio and I try to always say to myself that I can't walk now but I will walk again. So for anyone in an awful situation I really think that trying to find a positive in every negative helps and I advise that you try to do this because it will help you to see things in a positive light.

Inspirational girl

My fab friend Holly aka Holldog asked if she could do a guest post on my blog and of course I said yes as she is amazing at writing. So here we go...


Despite the things Evie has been through in the past few months, never have I ever seen so much courage, strength and bravery in person, never mind a 17 year old girl. Although it can be difficult not seeing Evie as much, she is still always there making us all laugh on our group chat and through snapchat (our snap streak is still going very strong)and so we try our best to keep her company through our phones at the times we can't see her in person. But mainly its Evie still keeping us company and making us laugh daily. It still amazes me the amount of things she does without complaint and the motivation she has for things such as physio, as she knows its what she needs to get stronger- and it inspires me to not take a lot of the small things in life for granted. Her positivity is the key to her recovery and hopefully we as friends help her remain positive and cheer her up whenever possible. We all love her to bits and couldn't be prouder of all her achievements and her amazing spirit that keeps herself and us all going. 

Depth

I wanted to write a post explaining something that's been on my mind a lot throughout this whole experience. I think a lot of people don't understand that there's so much more to having  cancer than illness and there's so much more depth to it. Like its not just that I have cancer in general , there's also small things that come with this experience such as the fact I can't use my whole left side. There are lots of things that have changed for me or happened to me  as a result of cancer and not just the fact that I had a weird lump on my brain, for example I no longer am able to go to the toilet without help. I miss being able to do simple things like even emptying the dishwasher and I wish I could have my life back however all of this is more motivation for physio

Daily routine

Tbh I can't really talk about a daily routine as everyday is so different for me. but there are some things I always do on a daily basis, so I will talk about them, so when I wake up on a morning I wake my Mum who sleeps next to me then we have breakfast, after that I usually go to the toilet(I have to banana board onto a commode) and my Mum will wash me, then dress me(17 year old having to be washed and dressed by her Mum..not fun) Along with having proper physio, I do some with my Mum on a morning usually , things like stretching my core as having a strong core is very important for standing and also we do leg exercises, it is hard work and I always say it's not as fun as the other physio haha but I know that it's important. 4 days a week I have the proper physio in which I do more stretches and work so I'm able to find the middle with my head and stuff to wake up my left side, also I do standing which I love doing as I know that being able to stand well is key to walking/stepping.We also practice banana boarding(I keep talking about this but I'm pretty sure a lot of people will have no idea what I'm talking about) so, a banana board is a small board that I use to slide across to get into my wheelchair and on the commode then back to bed etc. I usually banana board from my right side as it's stronger but recently I've been going from my left side in the hope of mastering it so I can transfer into a car and on and off a stair lift which is hopefully coming soon so I can be back in my bedroom. Also, during the day I usually have some visitors, my Grandma visits everyday and sometimes my friends will visit but obviously not during college times. Family friends will occasionally visit. I love to see people as they lift my spirits and it's a bit more normal for me. Normally during the day I will have some chill time, in this time, I will do stuff such as watch Netflix, colour in, do some crafts or play games on my phone, chill time is very important for me as I need rest and need to save my energy so I can work extremely hard with physio(my favourite activity hehe)

Retraining

Because my brain has been through a neurological trauma, my body has to be retrained to do things such as I'm learning to walk again, but also things like my bladder had to be retrained(I had a catheter in after surgery) and I'm having speech and language therapy although I can talk and my voice is fine I just feel like my normal and singing voice have changed(my normal voice changed after surgery apparently I was talking with a German accent haha). I know that it's going to take a while for my body to be back to normal especially for my left side but I'm ready to bring it on and just get through it. My muscles are fine just a little weak as they haven't been used for so long but it's the signals from my brain to my arm and leg that need retraining, the brain needs to make new connections 

In 5 years time...

This post is about where I see myself/would like to be in 5 years. Firstly, I would definitely like to be back waling which I will achieve if I continue to work hard with physio every week, I know that the arm usually takes longer to come back than the leg but I would hope that I would have my left arm back as well, getting my left side back is the most important thing for me. I would like to have gotten good results in my AS' and A2's (currently I'm taking a year out and will be resting next year,I'm studying photography, media studies and theatre studies although I'm not too keen on going back to do photography)I would also love to be at uni or thinking of uni, I'm really wanting to go to some kind of performing arts uni, specifically in London, although I know how difficult it is to get into and how hard that industry is, but I can always dream haha, because of my experience I have decided that when I'm better I would love to do some work with the Teenage Cancer Trust and maybe even volunteer as a youth worker because I would love if I could help other teens going through a situation like this, so I would like to see myself doing some sort of charity work but specifically with the Teenage Cancer Trust, brain tumour charity and also an animal charity (totally unrelated and nothing to do with my situation but I just loveee animals and feel very strongly about animal abuse, in fact i haven't talked about my pets yet which is surprising, the pictures below are my pets.Flash is the gorgeous black lab, he is now 10 years old and the pet we have had the longest, Minnie is the cute cavapoo and she is around 1 and a half. The 2 cats are brothers and are called Bieber and Muffin(Bieber is obviously my cat haha)they are nearing the age of 4. I absolutely adore my pets and I guess a plus to having a bed in the living room is that they can jump on my bed for a cuddle anytime.

Staying Strong

Throughout this experience I have had to remain very strong and positive. Tbh I'm not quite sure how I have managed, I think It's because I just accepted that this is happening and I just have to keep going and get through it, so the situation has affected me but I know that I  have to persevere and just keep swimming as Dory would say,I'm surrounded by positive people who help keep my strength going and it's very true that despite this I have down moments but they make sure I get back up again. Because of them I know that I will have tons of support throughout this whole thing and that I will find the light at the end of this tunnel, It's been hard for me to realise that I will make it out of this and I will get better and be able to walk again etc, but people around me such as family, friends and the people from the Teenage Cancer Unit have helped me come to the realisation that I will not be like this forever

3 month anniversary

June 21st marked 3 months since my 7&1/2 hour operation to remove Darren Lee and also 3 months since I last used the left side of my body, when I can walk again (which I will bc I’m determined and work v hard with physio) I will appreciate every little thing we take for granted on a daily basis…like walking, it’s only now I realise how much I took for granted having 2 working legs and arms. I just wanted to remind everyone to appreciate the small things in life and remember to radiate love and take every opportunity as you never know when things may change. Together one day the world can beat cancer and all it takes is spreading awareness

My Left Side is not Right

As a result of surgery, I lost movement of my whole left side bc the tumour was on the right side of my brain so they were operating on the right side and right controls left. I will get it back, I’m working very hard with physio a few times a week and there has been flickers in my left side of my hand and leg working, losing my left side has definitely been the worst part of this whole experience, not being able to walk or do things with 2 hands has been really hard for me but knowing that it will come back helps a little. It’s been an awful experience being stuck in bed or a wheelchair which I banana board or am hoisted onto, also not being able to do normal things such as go out with my friends, walk my dogs or walk upstairs to my bedroom (I’m currently sleeping in a hospital bed downstairs) has really affected me as I’ve lost the life that I was living before all this happened and I just wish I could do these things and think of how much I miss them 24/7

Treatment

Living with Darren Lee means I need a lot of treatment. I have already endured 30 sessions of radiotherapy and 42 days of chemo. Apart from a little bit of hair loss and soreness around the area that the radiotherapy beam goes in and out I have been managing pretty well. In radiotherapy I had to wear a mask on the front of my face and a clear plastic shell on the back of my head and both were moulded to the exact shape of my head (I looked freaky af) The mask got clipped down to the table so I couldn’t move whilst receiving the treatment, there was a massive metal door that was locked and everyone had to leave the room, tbh it was weird and scary af,, I was pinned down in the room for about 9/10 minutes (3 songs worth) but it wasn’t too bad I got to jam to my fave tunes whilst l laid on what felt like a concrete slab..For my type of cancer , I take chemo tablets (temozolomide) i am currently having a month off chemo before I start 6 months of intense chemo. I’ve had my hair cut shorter and donated my plaits to the little princess trust and if it starts to fall out lots i will just go bald bc yolo.I love my hair but i love living Darren Lee free more and that means having to go through chemo sooo I’m ready to kick ass for another 6 months in the hope of getting better.

Darren Lee

I thought I should probably explain who Darren Lee is so here we go, Darren lee is my brain tumour or was seeing as I had him removed 7 weeks ago (FYI brain surgery isn’t fun)
one night  I thought about how When Brenda on Emmerdale had a brain tumour she named it so I decided to name mine. The reason we chose Darren lee is because we thought it sounded like a lumpy man (no offence to anyone called Darren or Darren lee) At the time I was feeling very scared about this situation and although naming it made everything seem more real it also was funny so calmed me a little

Intro

My name is Evie Hope Whittaker and 6 months ago(on March 15th 2016) I was diagnosed with cancer. I want to write about my experiences and a blog seems like fun. I would be delighted if it could touch people in a similar situation and give a realistic insight yet offer some kind of comfort,whether it was just to one person or a thousand. Thank you for reading