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