Feeling relieved..

How did my MRI scan go? Fantastically! How do I feel? Brilliant! Am I worried about anything?..Definitely!
Everything feels like my life is getting back to normal. In fact..better than normal? It’s 100% been confirmed that this year I WILL BE AT LAINE THEATRE ARTS..and I absolutely can not wait. I don’t feel like lounging in bed all day, I never ‘don’t feel right’ and my head doesn’t feel all dodgy anymore when I dance..so I can’t use that as an excuse when messing up a pirouette?! And everything seems to be slotting in to action. I think there is around a thousand (if not more) things that I’m nervous about..but good nervous – the kind of ‘I CANT WAIT TO BE A LAINEY’ nervous! But there is also several things that are making feel sick with worry. I know I’ll be absolutely fine until the day mum says ‘I’ll seen you soon’ and leaves me in my flat at least 2 and a half hours away from home. The second I get a headache I won’t be popping a paracetamol – I’ll probably be two seconds away from calling an ambulance. I know I’m going to worry about most things – I’m lucky to have my flat mate already planned and there for me! There are silly little worrying things playing on my mind for example, how am I supposed to get my hair in a bun when there is 0 hair under my ponytail…so what am I supposed to grip it to!?…
Ok, ok, ok…enough wining! The photo of my MRI results have absolutely wowed me! I never ever ever thought that these trial drugs would ever be working this well on me!

On the 2nd May (the day we drove to Addenbrooks for the results) I felt tremendously sick and seriously just didn’t want to know what my consultant was going to tell me. I got Aunty Beth to have a day off work to come with my mum and I because..well it just didn’t feel right her not being there. She’s always there for MRI results. Nothing felt right. The actual wait for the results felt like years were passing..slowly. But no worries – after being shown what’s going on to ‘whatever was in my head’ made the wait feel so worth it – My consultant showed me the MRI scan results and I couldn’t believe it! I’d love to be able to explain it all to you…but to be honest I don’t understand half of the scans meanings or BUT I can tell you that whatever was in my head is magically disappearing – at a brilliant speed! In the photo that my consultant showed me, you can barely see anything! My brain kind of looks…normal!

How did I react? “Ah right, looks good…” But how did I feel inside? “OMG! WHAT! SERIOUSLY? THATS SO SO AWESOME. OMG I WANT TO HUG THE CONSULTANT…..MIA DON’T HUG THE CONSULTANT BUT OMGGGG. SO HAPPY!!’.

Of course I had to act cool about it?


For those who are a bit like me and don’t actually understand anything of a scan – the scan from February: look in the middle, that’s the tumour/whatever is in my brain. On the one in April..you’ll see it’s not there. Well, okay…If you zoom zoom zoooom in you’ll see an outline of it BUT I’ve only been on the drugs for 6 months and I have another 6 month trial of them – things honestly couldn’t be going this well! Well at least I thought they couldn’t!

It goes to show you that worrying does absolutely nothing! It doesn’t make you able to change the outcome of anything and it definitely doesn’t improve how you are. So that’s my plan for the following three months before the next MRI scan – remain positive and quit worrying about ‘what could happen’. If something terrible is going to happen..then I’ll learn to deal with it when it comes..but for now CHILL OUT and enjoy life!

It’s strange that I’ve always been such a ‘typical girl’. Actually, I’ve probably been one of the most immature typical girls who still talk in class and depend on parents. I could talk for hours about a certain boy or search the internet for new clothes and makeups – and then suddenly, when I woke up with half a skull, a shaved head, tucked in hospital bedding, I just no longer cared. In the blink of an eye I did not care about how well you’d straightened your hair, how my nails were doing, or whether he replied to my text..I get that this sounds ridiculous..who would care about that at any point in their life anyway?…well I definitely did. I did care about those kind of things, and I’m so glad I did – I lived like every one of my friends still do – and I’m happy that boys and clothes are their biggest issues.
I feel now like a better ‘me’ (yes ok with less hair and whatever). And I appreciate so much that I went through a stage of really appreciating who and what I had around me. Seriously, to everyone that wrote to me, sent presents, called me, sent cards or even commented on social media, I couldn’t not thank you enough. You definitely opened my eyes and realised that you never have to go through anything alone. And sure, I’m back to worrying about my eyeliner..attempting to straighten my hair and buying new clothes. I miss people I didn’t want in my life during the time of not even having my skull and only wanting my family around me. I’m back to wondering when I’m next going to go out with my friends and I can’t wait for a day of some ‘booze’ with them. But I’ve changed in realising that it’s ok for some days for you not to feel ok, and it’s ok to be scared and it’s ok to either want to be alone or want to be surrounded with hundreds of people. I’ll blog in a couple of months to update those who’d like to see how well these drugs are doing. But until then – remain positive and appreciate everything a billion times over!!

Yes technically I do still have cancer but it’s getting shot down in every possible way and from every different angle. So yup… ‘I have Cancer but Cancer will NEVER have me’.

X

Crazy Mind

So in two days I’m going to get the results to whatever’s going on in my head – do I feel like something’s growing? No, personally I don’t. But am I feeling on edge waiting for the outcome? Then yes…totally, 100%, yes yes yes! And for some reason more than usual.

This week I feel like the MRI future results have been constantly there in the back of my mind. I’ve been to dancing and living my life like normal, still showing my ‘happy-go-lucky’ self but my thoughts have definitely began to wonder. I’ll be watching television or on a drive somewhere and I start to think about all that could happen with this Cancer and who I’m scared to lose and how people will react. I’ve seen people cry about me having Cancer and I’ve seen it hurt people more than it usually hurts me – I’m more of a ‘nah, I’ll definitely beat this, no question about it’ and I move on with the day..and then suddenly within the past week or so there has been ‘other times’. Stupid times – if everyone is asleep and I’m just brushing my teeth or getting in to bed and I see myself in the mirror..I see my wonky hair, my operation scar and the idea of getting in to bed alone – and then the MRI ‘possible’ results begin to kick in..

I won’t lie, if anything ever happens to me I can promise you that I won’t be upset – because 1) I have had an incredible life. I’ve been lucky with dancing and friends I’ve met at education places and I’ll forever be super grateful for every big, small, friend, family and everything else in-between that has been in my past and 2) well, I’d be dead…so I promise I won’t cry in my coffin?!
Recently I’ve been so worried about what’s going to happen when I am gone if my results don’t turn out okay and the ’18 months of life left’ was all true. I’ve thought about this so logically, it’s constantly on my mind. I can tell you now that if things get bad or I die next Febuary, my sister it will be fine – she’s got Anthony and her baby (Savannah) so she’ll be looked after and she’ll have to be happy for her daughter! Leon, he’ll be fine too – great girlfriend, great group of friends and still has a great sister! Mum?! She’ll be fine. Mum copes with everything well – plus down the road she’s got her mum & her sisters family and then down another road she has her other sister and family and down another she has her brother and more family. She’d have people holding her hand from every angle. Her whole company of her dance school would be there for her! Plus she’s got my little pup hasn’t she 🐶💁🏻! But I panic daily about my dad. Dads brothers live in either America or Iran so he doesn’t have anybody he can fall on without being on FaceTime etc (which isn’t quite the same as having someone by your side). He wouldn’t talk or show to  Danielle or Leon that he wasn’t ok. He doesn’t show people his emotions like that. I’m so proud of him for everything – he literally does anything he can for his kids – left right and centre, over and over again – I just don’t want him to cry alone or feel alone or be alone. So if any of you can help me with one little thing? – make America and Iran just a step away, and be there for Papa.

Family 

Now I don’t know anything about MRI scans – I don’t know where each sound is coming from, I definitely don’t know how long each scan is going to be or why some seem to go on forever and others barely exist. I remember in August having a scan and walking out literally thinking ‘well there can’t be anything wrong because it was so so short – they clearly don’t need that many photos of my brain’ and I felt so relieved and as if I knew so much about MRI’s – and then I got told that I have Cancer – my point is that I clearly know absolutely nothing about it. Last Tuesday (25th) I had my current scan and as I came out I rang mum to tell her how it went. I stated about how it was ‘shorter’ than the scan I had 3 months before and how I felt it all went well etc. Mums reply was all good and she made a positive little joke about how ‘short MRI’s must mean good MRI’s.’ and that was that. It wasn’t until I laid in bed and thought about how short it was…it took me back to the last short one I had which turned out to be my worst one – my ‘you’ve got Cancer’ one. If, when I go in to Addenbrooks next Tuesday, are they going to telling me its growing? Am I going to ask to go to Switzerlands for an euthanasia drug again? Or this time am I just going to think ‘Mia everything’s going to be ok whatever the result’?

This week I’ve worried about big and small things quite a lot. My mum told me the other day that she’s booked going to Paris and I got so happy! I’m still so happy about it – I’ll adore Paris and there is so much I want to do and things I definitely want to see. But what if on Tuesday they tell me I shouldn’t be going to Paris – I don’t want to let the family down about something thats already booked. I’m also terrified that something is growing because then it would be silly for me to start looking for flats in London for attending Dance College. It would literally take dancing from me, another time, and this time probably forever. If my brain is that desperate to have Cancer then id appreciate it if it allowed me to go to Laine Theatre Arts at least for one year? – so I could at least state that I was a ‘Lainey’ after all!

ANYWAY – everybody, please keep your fingers and toes..and any other body part you can cross all crossed and ready for results in two days!

 

My First Seizure..

You’re going to think I’m mad, but seizures were the funniest/weirdest/scariest things ever and yet they were brilliant!

My first ever seizure was just after my second operation. My auntie (Beth), mum and I went to see my cousin, Yasha, in London. I can’t actually remember what our main reason was for being up there, other than the fact that the next day we had to be at Addenbrooks Hospital to have my staples removed and it was the day before I was going to find out I had Cancer. But anyway, all I can remember was after the second operation, as a kind of ‘celebration’, I requested sushi. The food was absolutely gorgeous and we had a lovely night..then it all began!!


We eventually got back to Yashas house. I remember I really wanted to tell my boyfriend of the time what we had to eat. I kept trying to message him but my sentences just didn’t make sense – my brain knew exactly what I wanted to say but I couldn’t type properly and the words I did manage to type were completely wrong – and I don’t mean by spelling…I mean I was just typing ‘shubfwsmnb’. My initial reaction to this wasn’t ‘oh my goodness HELP’ – it was ‘Mia, chill out, go and watch TV with yasha’. I didn’t know how to spell ‘sushi’…so I tried to ask mum how to but I couldn’t pronounce it either and we sort of all just laughed about that. It spilt out of my mouth completely wrong and…slushy? I tried it so many times and I guess mum and I just assumed that 1) it was kinda funny anyway and 2) that I must of been really really tired – (after a brain operation we kind of blamed everything on me being tired). That’s when it technically really began.

Laying next to mum I remember the right side of my teeth began to feel all wobbly and as if I’d had something in it..so I told mum and she didn’t look, she just said ‘Mia go look in the mirror then’, so I did – that’s then I saw half my mouth had completely dropped and suddenly I couldn’t speak at all without slurring. I remember I understood everything I was saying – shouting MUM MUM HELP MUM but my words to everybody else weren’t easy to understand. Mum laid me on the bed just as Beth and Yasha came in. My words were pretty much gibberish.

I completely understand everyone just telling me to calm down, ‘you’re fine, you’re fine’, but I could definitely tell that I wasn’t. I couldn’t move my arms – they felt dead and my lips felt all wobbly and unuseable. Now you’ll definitely find me weird saying this, but all I still wanted to do was ring my boyfriend and tell him that I’d had sushi hahah (as if there is nothing more important to concentrate on). I kept mumbling and managing to convince Beth to call Ollie  – and eventually when I got hold of him, all I actually wanted to do was speak to a random friend that he was with and tell HIM about my sushi! My auntie was actually brilliant during this time – she kept me calm…well, ‘calm-ish’…and kept telling me that I was ok! Yasha had the ambulance on their way to his house to get us. On the other hand there was mum…well she kept saying that she couldn’t find her keys for tomorrow journey to Cambridge and just kept looking for them over and over? Priorities mum?;) Writing this blog got me questioning ‘why was that mums main concern?’ Today she said it was just her type of panicking and told me that she isn’t actually that great at coping with emergiences…her brain kinda ‘clocks off’ and searches for something a little more practical to do! Like find her keys! She just really didn’t want anything bad to be happening to me so, and in being scared, her initial reaction was to find her car keys for tomorrow’s calm drive to Addenbrooks.

By the time the Ambulance arrived my seizure had eased off. At first the paramedic didn’t want to take me to hospital because he kept telling me that I was just worried about meeting my consultant the next day.  This made me so angry. They didn’t understand that once I’m with someone medical all my worries go away and I knew that something that just happened to me wasn’t right. I eventually persuaded him to let me go to hospital. When we got there I had two consultants, two nurses and a doctor all tell me that nothing was wrong or happening to me – none of which grasped that I’d had a seizure. They were pretty laid back and didn’t ask asbout the fact that I had 44 staples in my shaved head with black eyes and a chubby butt (steroids haha). As they started to leave the room I remember shouting LOOK LOOK as I felt another begin. As I couldn’t move my arm, I kept trying to tell them to LOOK AT MY ARM, and pointed at my mouth to show them that it wasn’t working properly and trying to get them to listen to my blurry speech but again, they just kept saying ‘it’s because you’re worried’. They basically just clamined I was having a panic attack and just let me stay there for several hours before I returned back to Yasha’s home.
The next day we drove to Addenbrooks and within 10 minutes of being there and me explaining to my specialist nurse what had happened the night before, I was told that it would of definitely been a seizure and I was given tablets for when another occurs. (They clamined that it’s very normal to have seizures after a brain operation).

Ever since this all happened I’ve only had two other occurances which have been very mild.

Although I don’t actually want to have a seizure again I actually really liked them (ahahah)! My reason for saying that seizures were brilliant is that every time I had one I remembered things vividly from my past – after each one I’ve been able to recall events that I’d completely forgotten about. (I can’t wait to have another one – just to remember the old me..with a car🙊)…

Drugs and Paranoia 

I’d just finished having chemo and radiation and, after what seemed liked forever, the four week ‘wash out’ was finally over and it was time for the trial drug to begin.

So my first week taking the trial drugs seemed absolutely fine – I had to decide on what time I was going to be taking the drugs due to the fact that you have to take them twice a day, twelve hours apart AND I can’t eat for two hours before I take them or an hour after. I have to take a fridge drug, which is part of the trial, once with the morning drugs and I have to continue on talking my seizure tablets once in the morning and once at night. (It’s not too hard to get your head around the timing once you kinda get the swing of it). This doesn’t sound too difficult but trying to find the right time to take them, plus remain sociable, not being super awkward and picking a time that isn’t at ridiculous O’clock, it gets a little tricky. So after a while we finally decided that 6am/6pm was my time to pop the pill – this means that between 4 to 7 I can’t eat or drink anything except water and I do find myself looking at things on the table thinking ‘mm mmmmm’! Every month I have to go back to Addenbrooks to see my consultant, have blood tests, have my weight taken and collect my drugs at the trial department. So far so good!

But this kinda quickly changed. Within a few weeks I had the flu, and the second I seemed to feel ok again it would soon snap me back to something else being wrong. Each time I’d either be being sick a lot, or having painful joints, absolutely freezing and then randomly sweating, constantly sleeping a lot and just spending the whole day with zero energy, and therefore it meant I spent hours either throwing up the drugs or just not being able to take them at all. The second I started to feel well id leave the house and catch any bug or illness that was going round – I’d hug a friend and see her coughing later and think ‘oh no…thats me ill again’. I also started having issues with low marrow and an iron deficiency etc. It didn’t really seem like the most relaxing and stress-less drug. Every 3 months I have to go for an MRI scan to check the progress of whats happening within my skull. Luckily, and fingers crossed it remains this way, my last MRI scan showed a much smaller shadow of whatever it is in my brain. My next MRI scan is booked for May…I can’t decide whether I’m dreading it and feeling nervous, or whether I’m looking forward to being told that its even smaller!?

However – we are now back on track and recently I’ve been feeling well. Very well. With the drugs these days I don’t feel like anythings wrong other than maybe the odd joint ache – but even then this could be due to the fact that I’m BACK TO DANCING!!!!!! And isn’t it normal for your joints to ache the day after twisting your body in to the strangest positions ‘n proper grooving!
Within the last..maybe 3 weeks..I’ve started feeling like ME! I know that I’ve probably said this in the past blogs but I just don’t feel like anything is wrong anymore. I’m finally back to going out and seeing friends and enjoying bits of life that I just didn’t have any energy for. Im back to dancing and my fingers are 4000% crossed that ill be making it to Laine Theatre Arts in September. I’ve been dancing since I was two years old at my families dance school – The June Glennie’s – and this has become my life. I’ve spent my years competing in competitions all over the country and finally my dream came true when I won a huge scholarship to get in to a certain dance college. Seriously, everything that has happened to me all happened so quickly – I’d literally just been on several shopping trips with my parents buying items for my new home and life in London and then it completely was taken from me – I awoke with half a skull, my head shaved and quickly stamped as a Cancer patient with just an 8% chance of full recovery..and then now, I’m back to it all again..except to the tequila shots every weekend! That being said I just don’t feel like ‘its’ there anymore..I’m sure some of you are looking at me thinking ‘Mia, it doesn’t just disappear like that’ but..hey, y’never know! I will be spending the next 5 months working to get back to the 18 years of training that I had and I’m praying so hard that ill be making it to Laine Theatre Arts this year!!


So all in all I don’t feel like anything bad is still within me, and if there is, then I feel like the drugs are doing a blinking good job, but the one thing that has grown within me..and definitely doesn’t have any perks.. is ridiculous paranoia and extra OCD.

I’ve always had a little bit of OCD..making sure I chew evenly on each side when eating or taking an even amount of sips of water..I always did little things equally and thought if I kept doing it then nothing will ever go wrong..and then suddenly I remember waking up after my first brain operation and thinking ‘F you OCD’. I told myself I was going to quit it immediately because it didn’t keep me safe or stop anything bad happening, and I reckon that lasted around 8 minutes. It’s actually just got a lot worse. I make sure I eat an even amount of anything thats for dinner, throwing the ball an even amount of times for my pup, my alarm numbers are 6:04 etc, pouring the milk twice when making a cup of tea, doing an even amount of certain things before bed, tapping my heels constantly, washing my hands four times every time I go to clean them, I even made my sister go in and out of a car park with me four times before I allowed us to get in the car otherwise I’d of blamed myself if anything bad was going to happen. I don’t exactly know what doing any of these things on an even number is actually going to do…but I don’t dare stop just incase!

I’m constantly paranoid that I’m going to have another seizure and I think a lot about the pain of blood bursting near my brain and thinking is it going to hit me again? and will it hurt so much that I won’t be able to scream? So since returning home from hospital in June I haven’t had a minute by myself. Using the bathroom, going for dog walks, showering, or being left alone in the car etc – I never want to be alone. Well…technically things are looking up! At first I’d HAVE to have my sister or mum in the room with me, all day, everyday… I still wont go on a dogs walk or anything like that, BUT when it comes to the bathroom (for all reasons…) I just have to FaceTime my sister 24/7 instead! (Sorry Danielle!).

My sister and I

I’m super paranoid about the second I get a headache. I’ve been quite lucky and I haven’t actually been having terrible ones..but the second anywhere on my head begins to ache or go through any little twinge of pain, I panick and convince myself that something bad is happening and all I want to do is to go to hospital.

I tend to make sure that where ever I’m going – whether it be my cousins house or hotels etc – that there is a hospital near by. I always google where it is and tell whoever I’m going to be with to always explain to the doctors what is wrong with me and what tablets I’m taking because I guess with them knowing that it will speed up diagnoses for each doctor and fix me quicker! Plus I definitely wouldn’t be with anybody who didn’t have a car!
URGH…Don’t even get me started talking about cars – it definitely…DEFINITELY…makes me mad. I’ve been told that I won’t be able to drive for ‘around two years’. I hate that it’s not a definite two years because I’m literally counting down the days and the thought of the two years being up and then being told that I have to wait another two years will make me so so upset. I know that most people after a seizure have to wait a year before they can drive again, and I totally understand that if mine was really bad (which I’ve been told that it wasn’t) or if it was due to my chemo and radiation as well, then sure, add another year, make it two…but then PLEASE please please let me drive after that!! I get that you spend around 17 years of your life not being able to drive and so I should be used to it but I miss it so very much now..I’m no longer 17.. – I live in the middle of nowhere – it’s not a quick walk to the bus stop or my friends house or places to shop, absolutely everything is just so much harder and I feel like a kid again. Asking my dad for a lift everywhere seriously makes me feel super needy. Plus..I’m not sure that this actually counts as the actual issue, but I loved my  car…AND ITS GONE!. Driving made me feel so much more independent and I absolutely miss it already..now I feel like a 10 year old needing my parents all over again!

ANYWAY – I could go on and on about this car problem that I have..trust me! So lets end this one here – apart from constantly being paranoid and missing my car, everything is starting to feel just like normal! The drugs seem to be working and my personality is coming back to life!

img_7407-1

Look for the little perks..

I know, I know.. ‘there is nothin’ good about cancer’ .. and yes, I could’t agree with you more. But to me, there is no point sitting and only thinking about the bad things..open your eyes – sometimes it brings people together, it can make you look at situations in a completely new light, or can help you discover the important things in life. I can tell you that Cancer definitely makes you appreciate things, whether it be big or small, and every single patient, friend or family member goes through everything differently but here are a few things that really made me open my eyes.

I believe this is due to our age gap, but my brother and I have never been as close as my sister and him are. Leon and Danielle would argue and fight and whatever – but at the end of the day they’d always have their inside jokes and nights out together. Danielle has and will forever be my best sister, best councillor, and best friend. But Leon and I never had anything – we bickered a lot..or would spend a week or so without speaking. Not because he hates me or because we fell out..just because we never had anything in common or anything to even talk about. I’d be so jealous of Leon and Danielle playing games together..I just used to wish so hard that I could do something for Leon to make us just as good as him and Danielle were…Well, I guess Cancer was it. Leon was offshore at work and got a call off Danielle’s boyfriend to tell him I was in hospital with a ‘bleed in my brain’. – Danielle told me he broke in to tears. She said he sat by me the whole time when I wasn’t waking up. Mum said while I was asleep he played my favourite ‘Ed Sheeran’ songs and tried talking to me. I remember when I eventually woke up hearing him crying and holding me and telling me he loved me. Even months later sitting here writing this – I would adore for that to happen again just so I could hear him sound like my own brother again!

Another perk has been a site named ‘Just Giving’. On the site many people donated money to me – they wrote many lovely comments and I couldn’t thank you all enough! It showed that they wanted my family and I to have a night of normality – just not thinking about cancer or whatever – and they brilliantly donated towards it! We ended up going to London to watch The Lion King in the West End. I absolutely LOVE it! It’s definitely one of my favourite shows!

img_7978
(Left) My sister, Danielle. (Right) Me.
img_8119
[Family]
Trafalgar Square
 

In the last year before all of this happened I stayed round my previous boyfriends house every night – maybe one day a week I’d stay at home…maybe! So I never got to see the family much and certainly never saw old friends who I’ve known my whole life.
Now my life has completely changed..but again for a good reason – Now we have a group chat on my mobile filled with family and family friends. Some days we ramble on about nothing, other days we just send random photos and other days talk about what’s happening at the hospital. I absolutely love it! It lets me open up to people daily and hear close family’s opinion on everything. We go and watch shows together, meet for lunch, arrange parties..we just think about seeing each other so much more! It makes me feel like I’m not alone. In fact – ever since I’ve had Cancer I’ve heard from people I haven’t heard from in years..it’s opened me up to so many people. I know this sounds ridiculous, but if anything happened to me now, at least I’d be happy that my illness has brought a lot of people closer to each other – I’d be happy watching people from up above being happy and reunited. Even hearing from one of my cousins more often feels so lovely ..he even got Enrique Iglesias sending me wishes and kisses on a video! I remember my family showing me the video of Enrique telling me to get well soon and saying how he was ‘sending me love’ etc…and all I did was cry and watch it over and over again hahah!! (Now that DEFINITELY still makes me happy).

img_8120My dad absolutely hates dogs..well no – he loved our old dog. We used to have a big ole’ Doberman and we all absolutely adored it. He was our protecter dog and stayed outside in both of his kennels in our garden – now dad loved this dog because it was our guard dog while he was at work during the night and it never made its way indoors. But anyway, dad would absolutely hate to have an animal in the house..however..he brought me a little Chihuahua! My uncle had previously said ‘people say the love for an animal can help to cure people’..then BAM, I got a pup!. Dad said to my sister that “if there is just a 1% chance that Mia loving an animal will help her recover then its worth getting a dog” – and of course, being the best dad, he got me the cutest, cuddliest little princess of a dog, who lays with me INDOORS. (Thats got to be the best perk? Getting a puppy due to Cancer?).


My 20th surprise birthday was absolutely incredible. My family and friends me forget about my illness and just enjoy my birthday like all 20 year olds do. They hired a hall & barn and had many meals, karaoke contests, quiz’s, fancy dress competitions, treasure hunts, a cocktail night, makesups, a tea party, waxes, massages and hilarious games for a long weekend – I was truely spoilt. My family love a good get together, and usually we pick 30ths to really wine and dine, but due to me being low they chose my 20th – they never fail to lift my spirits.  


My ex boyfriend had just told me that we were going for a meal due to my birthday, but opening the door stood everybody!! Even my consultant was in on it – they’d been planning it for months and I didn’t have a single clue. I even got a Vivienne Westwood styled cake!! I’ll be forever grateful! 


My dad and uncle used to be close and then something happened when I was just born – (I can’t tell you about that because I genuinely don’t know what happened)..but anyway, they fell out and never spoke again. My mum and auntie stayed as close sisters..but I remember being a kid and being around my uncles house – I used to be scared that maybe dad would see me with him and possibly tell me off. Anyway..after waking up the first time in hospital I had my mum, auntie, everybody next to me – including my dad and my uncle. Having something serious happen, like me being ill, seems to make a lot of people forget about the silly things and move on. I remember laying on the hospital bed with my eyes feeling heavy and being so close to sleeping..and I could hear them speaking next to me, just casually chatting in their Persian language, as if a ’20 years ago argument’ never happened. My dad saw me falling asleep so they both stood up and said they were going to go downstairs to let me rest ‘peacefully‘ – but I remember telling them both to stay and talk beside me. Listening to them talk to each other was so comforting..that was ‘peaceful‘.

I just want you to understand that having Cancer doesn’t need to ‘destroy’ your life – get your fists ready and show it that you can be happy! I’m so lucky that I’ve been given a second chance at this and I’m so desperate for those who have gone through having Cancer, those who know some else who is going through it, or just somebody wanting to have a read, to appreciate EVERYTHING! 

You just have to see that Cancer does suck…but you HAVE to be positive. You HAVE to look at who you have around you. You HAVE to enjoy the little things and every day look for the perks!

Radiation & Chemo

So… 1) I’ve got brain Cancer. 2) I’ve been told that there is an 8% chance that i’ll live longer than the 18 months that they’ve given me and 3) we are all still hoping that my consultant and lawyer are fighting hard for the trial drug…
But, lets at least try with some Radiation and Chemo first, right?

img_7961

On the 19th September 2016 I had to have a mask made for radiation in order to make sure that I couldn’t move a millimetre whilst the rays were being shot at my head. I can’t actually remember the exact number my consultant said, but he sure scared me when mentioning that I would have over 300 rays shooting to one area of my head.
The nurses, who made my mask, started by heating it up in a big vat of water. I had to lay down on a radiation machine wearing barely anything, and was told to shut my eyes and definitely not open them. I had to stay as still as possible. I felt a hot, claustrophobic sensation as they put the sheet over me and waited for around 15 minutes for it to melt in to the shape of my face and upper body. They had to do this a week before my radiation began. I had previously mentioned that I was thinking of having my hair cut very short due to the fact that one side of my hair was still well past my shoulders whilst the other was only a few inches long (from when the surgeons shaved it for my operations). The nurse said I mustn’t make any changes in the 6 weeks of radiation and chemo because the mask had to lay in the exact same position and even a haircut would interfere with placement. Therefore, I had to bite the bullet and get the chop. This was a huge deal to me as pathetic as that sounds – I’ve always had such long thick hair and now these days half my hair makes me look like a boy!  Having radiation and whatever didn’t bother me too much, it showed my family that I was trying to recover – just during all of this I wanted to look like I used to – normal – not swollen, half shaved and puffy.

(The picture on the top left is me before everything began. The photo to the bottom left is me with half a skull, and half of my long hair, before my last op. Photo to the right is me after my first ever ‘short’ hair cut, and after skull replacement)

img_2747-1

26th September – the big day!  I took all of my Chemo tablets on the drive to Addenbrooks, I was so so nervous. The radiologists laid me down on the machine and asked for my name, birthday and address. They told me I was going to hear noises, smell something horrible and see flashes of lights. They then said that none of these things were actually going to happen – there wasn’t actually going to be a smell or whatever, but due to where they were shooting the radiation my brain would act wild and create imaginary senses. That terrified me…I didn’t want to be seeing or feeling things that weren’t actually there – thats just creepy! img_4264They placed the mask over me and screwed it on. My first 3 minutes of radiation absolutely stunk…disgustingly. I remember it smelling like a strong sense of cows manure. In the last minute I saw so many flashes of random colours – they seemed to bounce off each other and completely fill my eyes. This is fairly random, but I remember when it first started I could feel my heart beating so hard, and due to being a dancer, my initial reaction was just to practice my ‘modern solo’ in my head to take my mind off it. I’ve got such OCD that this became a tradition that I had to think about every session. If I finished thinking about my dance too quick, I even added a bow and applause just to keep my mind occupied!!
During the next 6 weeks, I loved every single time I laid on this bed. I loved going through my modern solo every day in my head, doing the same routine as I walked from the car park to the hospital, and I loved seeing the flashing lights. Being the weird girl that I am..I thought it was fantastic. I got excited to see what random images I was going to catch and the flashing, bright lights didn’t scare me.
By week 5 I still hadn’t had any of the  effects that they said I would have. My consultant was shocked that I wasn’t exhausted, I had only been sick one day and although i’d been told the radiation would interfere with my eyes, I could see just fine! – however, I had started to lose lots of hair and my eyelashes, but not to the extent that I was told that I would.img_2743-1The journeys to Addenbrooks every day felt long but listening to music and spending time with mum and dad made it far more enjoyable. We live quite far away from Cambridge so each Monday mum and I stayed at my auntie Janes – this made the early drive on Tuesdays much easier and Monday nights full of gorgeous food, chats and seeing my cousins who live nearby. There was a lot of days of having to wait around due to the machines constantly breaking. Every Wednesday and Friday I had to get injections to test my blood and make sure everything was ok within me – I have zero veins that you can actually see, but I had the most humours and good looking Murse (male nurse) and he made it far more fun! My sister took me once a week and those days were definitely enjoyable. Everybody in the waiting room seemed very tired and grumpy but Danielle definitely lifted the mood – we got in to states where we just couldn’t stop laughing, tears were streaming and we were properly shoulder giggling – have you ever been put into a silent waiting room, where you know its definitely inappropriate to start laughing, but you just can’t stop?  Well thats how Danielle and I were…..every week.

FullSizeRender-2.jpgI was invited to ‘Scruffs‘ hairdressers by the Cancer Youth Trust at Addenbrooks to have a wig fitted. The wig hair was so beautiful, and it felt ridiculously soft. All the staff at the shop were very loving and kind – they didn’t make me feel embarrassed or self-conscious. I never actually wore the wig, although I do still have it at home. I knew people would look at me with my ‘strange’ hair loss and I felt like every person I passed in the street would stare at me funny, but I felt even weirder with the wig on than without it. My brother on the other hand tried my wig on all the time – just to make me laugh he kept saying that he’d go out with it on if I didn’t cheer up but actually, I think Leon liked the long haired look on his own head rather than mine!

fullsizerenderAt the end of the 6 weeks my consultant said that he felt that the chemo and radiation had ‘done its job’.

A week before the end of my treatment we got a very weird call from my consultant. Mum and I had literally just got to the car park and he called and sounded so serious. He said we needed to come back as he really needed to speak to us. The walk to hospital made me feel sick. Waiting for my consultant to invite me in to his office seemed to go on forever..however, just seeing his face changed my mood immediately. He was overly happy!

“YOU’VE GOT THE DRUG!”

We’d expected to wait for weeks to be told whether or not I could be given this trial drug, however just four days later my consultant was absolutely thrilled.
I had to go on ‘wash out’ for a month to get the chemo and radiation out of my body before the drugs began…

 

“18 Months…”

fullsizerender

How did I feel when I just got home after brain surgery and being told I had Cancer? Inquisitive and fat.
I’d been taking steroids for the past 2 months, I was eating a lot and definitely putting it on, my skin was terrible. I absolutely hate steroids.
Yes I was inquisitive – but only because I felt just fine. I wanted to ask so many questions and just wished I understood everything so much more – not because I felt the Cancer sitting on my brain – but because I felt like ‘me’. Yeah, sure, I was shattered, and felt ‘down’ and I still couldn’t see much due to my eyes still playing up – but what can you expect? I’ve just had 100% of a tumour yanked out of my head, a fake skull pushed in and my own scalp pulled and stretched and sewn back up…I’d also just been told I had a very bad Cancer and then sent home..so yes – I wasn’t grinning at it all..but other than that, I felt like the old ‘me’ again.

Following my two surgeries, I was referred from my brilliant brain surgeon to my oncology consultant.
Mum and I went to Addenbrooks for the appointment. My auntie (Beth) came along with us so that if at any point I didn’t want to hear what else the consultant was going to say about my Cancer, I could easily leave the room and not be alone. My uncle, professor of Immunology at the university of Southhampton, came along as well in order to translate anything I didn’t understand. He understood a lot about the treatment and a new trial drug that I would need – him being there made me feel as though it didn’t matter that I didn’t understand half the hospital lingo.

I remember next it got way too intense for me. Mum, Martin and I were all taken in to a little square room with my new consultant and his assistants. I, again, didn’t even feel that scared – I was expecting to hear about my Cancer in the same tone that id been hearing about my operations. At first, I heard about the illness that I have and how its a stage 4, very rare, Cancer. And then out of nowhere I heard things that went straight to my heart. He told me that in the next 6 weeks I would have to do the two hour journey to Addenbrooks everyday for chemo and radiation. He told me there were set times that I had of taking certain tablets and when I was allowed to eat and drink. He told me I would lose all of my hair due to the radiation, and that the tablets would make me very ill and extremely tired. I genuinely thought that this was the hardest it was going to get. But no…He told me that my Cancer could not be cured and that I have only 18 months to live.

My heart literally dropped.

I remember my face was blank, and so was my consultants. We didn’t know each other and he’d literally just told me that I didn’t have very long to live. After about an hour or so of hearing horrible details I remember him looking at me and asking if I had any questions or anything he could do for me. I remember starting to cry..for the first time in all of this..id tried to keep myself together so much – I didn’t want to cry sitting next to my mum.

I stared at him, and I remember just saying ‘I want to go to Switzerland’. This sounds so ridiculous, and today I agree, but I remember the room being completely silent and everybody looking at me like what is she on about?!?! I told them I wanted to go to Switzerland to be given the euthanasia drug. My consultant literally just looked uncomfortable, like he didn’t know how to respond. He kind of looked at mum a little, before stating that we would ‘try radiation and different drugs first’. I know this sounds so terrible and dramatic, but I just did not care. I didn’t want to be there. I had a moment of being completely overwhelmed and weak. I didn’t want to sit there all the time counting down the days – I’d had a good life – that honestly was enough for me.

To finish our conversation, my consultation told me about a new trail drug that has proven to be very successful on Melanoma patients but never used before on brain Cancer. Due to the fact that I have the ‘V600E mutation’ I was told that I would make a good trial patient however its extremely expensive and therefore I did not automatically fall in to the bracket to be given the drug. I would need to be given the drug on compassionate grounds – I needed my consultant and a very good lawyer in order to fight my case. If my case was successful then I would be the first ever brain Cancer patient to receive this drug.

To rub salt in the wound, I was told before I started chemo and radiation I would need to have my ovaries put to sleep to protect my chances of having children in the future.

The walk back to the car and the drive home took a while. We thanked Martin for being there and begun the drive home. As crazy as this sounds, I wasn’t frightened for what I was going to go through – I was and still am scared of the effect it will leave on everybody else, especially my dad. My dad literally lives for his children, and I don’t ever want to see him upset.

I didn’t like being at home. Yes, I appreciated people coming to seem my family and I. But I just wanted to be on my own – well, either that or at hospital. When I’d woken up from my operations all I wanted to do was be back home, but now after being told everything about drugs, injections and not living much longer, I just wanted to be in a bed next to people going through the same thing and doctors who could make me feel safe.

A couple of weeks later the radiation and chemo began…