The Patrick Stewart double act...

Hallo all!
Unfortunately this is just a brief post (sorry, I'm extremely flaky at the moment)- and it's to say that my wonderful aunt Binne and her boyfriend (everybody say oooooh) are shaving their heads for charity in April! So we shall all be befuddled baldys together! Although I don't think Binne and Mike fully understand how long it takes to choose suitable hats for every mood, and how cold their ears will get (VERY COLD, ITS SHOCKING)... But I think they're very brave and I love them immensely for what they're doing- they're the cooliest (it's totally a word, shhh). Also- Binne, I'm very sure you won't look like Kevin Spacey OR Patrick Stewart... Although that would amuse me muchly if you did, no offence. Love you's.
So here's a link if you would like to check it out, and they're raising money- so if you want to (NO PRESSURE GUYS...pressure pressure pressure... I'm joking.) please feel free to donate!
Love to you all, especially Binne and Mike,
Befuddled Baldy!<3

This be the lovely people!

and this be the VERY IMPORTANT LINK!!!! ------> http://www.mycharity.ie/fundPageTemplateX.php?urlRef=binne_mike_sudden_hair_loss

The Easter Bunnys Worst Nightmare

Well, hello there, wonderful people! How are you all? I am halfway through my second course of chemo at the moment, and it sucks. Majorly. The side effects are irritating, and not pleasant. Sore mouth, sensitive skin, tummy ache, nausea, trouble sleeping... Tis a wonderful journey.
Last time I refused to wear scarfs, as I thought they too obviously screamed 'CANCER', but this time I think its fairly obvious anyway, so I bought (when I say 'I', I mean Mum) a really pretty one from Accessorize... It has butterflies on it. In fact, I was wearing it the other day in Waitrose (whilst stocking up on ice tea and antibacterial hand gel) when it happened again. About a year ago, I posted a blog about some girl staring at me in Tesco (it always seems to happen in supermarkets...) and it happened again, in Waitrose, but worse!
So I was casually wheeling around the trolley, and this couple passed me- and because I was wearing the scarf and I was pretty pale, it was obvious I had Le Cancer. Anyway, this dude (in the aforementioned couple) just blatantly stared. This was fine, I just smiled and carried on. But, you know when somethings reeeaaally interesting or shocking, and you pretend to casually walk past it again just so you can stare again (come on, we've aaall done it)? Well, he did that. The awkward thing was that he did it twice. And I caught him staring both times. It was quite an awkward moment for both of us... Especially the third time, when I was holding a big easter egg adorned with butterflies that looked quite similar to my butterfly scarfed egg shaped head. I should probably just avoid supermarkets (while bald, I mean. I'm not turning into a recluse or anything.) from now on...
OOH! Speaking of! EASTER, yay! I mean, Easter on chemo kind of sucks, because chocolate pretty much tastes awful to me (I KNOW, IT'S TRAGIC) but it's still fun to see the world full of chocolate and see who gets sick of creme eggs first (nearly always me). Ooh, and easter egg hunts are fun! Although, Lucy and I were having a discussion about this, and about whether I'd be slightly sensitive to all the hype as my head is rather egg-like. We decided that if I were to get too bitter, I could always paint my head like an easter egg and hide in the bushes with just the top of it showing... And then as soon as an Easter egg Hunter found me- I could jump out and scream at them. Hence ruining Easter. I could be the opposite of the Easter Bunny... What eats bunnies? I could be the Easter Ferret! Thats a horrifying prospect...A bald painted girl jumping out at unsuspecting easter egg hunters claiming to be the Easter Bunnys worst nightmare... Hmm, although that does sound fun, it also sounds rather psychotic and mean, and I would never be able to paint my own head like an easter egg convincingly. Its a completely unrealistic plan. Anyhoo! I have to go now, I made homemade lemonade earlier (domestic goddess that I am...not) and it is properly chilled so I'm going to enjoy it. Or make others enjoy it for me. Either works for me! Much love to all you's!
Le Befuddled Baldy <3

Hallo there again, beautiful people!

Hey! I haven't written in really quite a while... I guess I didn't really known what to say. Its difficult to find words in this kind of situation. It's difficult to sum up feelings or emotions, to actually say or write what is happening, especially when half the time I have absolutely no idea what's going on myself! 

Anyway, so to update everyone- I have unfortunately relapsed. It's the same as before; classical Hodgkins. And still curable (YAY). Just means more normal chemo, and stem cell-y stuff on top of really intensive chemo after the normal chemo. So...not so fun. 

I've already finished the first course of chemo, which is cool! So I'm a quarter of the way through the normal chemo already! And I didn't throw up once. Yay! They're giving me these daily injections at the moment, to boost my bone marrow for stem cell harvest this week... But unfortunately that might not happen... My body decided that it was going to be difficult and get a bug and cold sore (like last time, ugh) and now I'm in hospital on antibiotics and antivirals... For reals. It seems sorta ridiculous, just for a cold sore and stuff, but apparently I'm febrile neutropenia category at the moment... Which means really low white blood cell/neutrophil count... I think. Don't quote me on any of this medical information, guys, just in case... 

But yeah. I'm still holding up. I dyed some of my hair blue, before I lost it all again. And then I cut it all off. It's so depressing losing it all, you know? When it comes out on the pillow, and it makes it worse, so I decided to just go for it. Regretted it right after, and then couldn't look in a mirror without a hat for a while... But I'm used to it now. It's just hair, and to be honest, the hats are fabby. I'm back to all my old hat collecting habits... I have a snazzy 1920's style one, and lots of ones that look like bears... And a new giant fluffy one with big floppy ears that makes me look like an Ewok when I wear it! It's lush... And ridonkulously warm. 

Ooh! I forgot to mention earlier with all the medical stuff, I'm now on the TCT Ward for inpatient stuff... It's amazing! It's so... Teen! It really caters for my age group, it's amazing... And also, there's other teens here to chat to! Which is really nice, as it's nice to talk to other people about the gross stuff. Like hair loss and side effects and the gruesome tumour or blood stuff... because normally people pale a little if I try to go into it too much (hehe)... 

Anyhoo! It's stupidly late, and I should be asleep- but I'm feeling a little rotten and had a milkshake (not eating properly so it's a special nutrients milkshake),  and a flat sprite (nausea, it actually works-try it some time) not so long ago, so I'm still wide awake, which is annoying. So I'm probably going to listen to some calming music (Pfft lies, all lies...) before drifting off. 

Sorry it took me so long to write on here again! I shall try to write more and ore in the months to come! 

Lots of love to all you beautiful people! 

Very much the Befuddled Baldy again <3 

Mooooving Forward!

I realise I haven't written in a very, very long time. Its December, and nearly Christmas! I'm very excited, I think Christmas is my very favourite time of year... I hope it treats you all well!
So, I started school full time again in September! It's going quite well, I took my mocks recently... C in Maths, U in Religious Education (don't ask why I failed soo badly, I don't even know...), D in Chemistry (or an E, I can't remember, but I think it's a D) and an A in my Biology! I try to focus on the A in Biology and just hide from the rest of the big red or green marks on the other papers... The scary marks of my future all just on some pieces of paper! Arghhh!
So, anyway. My life has been kind of hectic recently, all revision and school and illness and teenage angst/drama. It's good to be back, haha.
I'd kind of forgotten just how stressful teenage life is... I remember at the beginning of term, half the time I was just screaming "I want to be at home, hiding under the covers!!" in my head, while I tried to get back into timetables, and controlled assessments and the worst of all... EARLY MORNINGS!!
I guess it's a good kind of stressful, not the kind that makes me want to rip my eyes out of their sockets and lie in a cardoard box in the rain kind of stressful... more a kind of normal stressful. Like, a stressful that I NEED to experience. Keeps my head clear, if that makes sense.
 So, big news. I had my three monthly scans in November, and then got called back... They might'e found something again. It's no real biggie, it could be absolutely nothing! They're just checking! And even if it IS something, its just the same thing over again... well, with a few different things, of course. Ah, Life. Thou art a cold hearted wench when thou wants to be...
I've discovered ear cuffs. Which are basically teeny cuffs (of all sorts of gorgeous patterns and shapes) that clip onto the top of the ear. So my ear is quite red at the top from wearing them too much. They pinch a bit, but they look so cool!
I also am loving "The Power of Love", and although I do love the Gabrielle Aplin version, I have a soft spot for the old Frankie Goes to Hollywood original... But I have both of them, for whatever mood I happen to be in. Make Love your goal, y'all! I hope you're all enjoying Christmas, and that you all get what you wish for!
Lots of love to all you beautiful human beings,
(Im not Bald anymore so changing it to Teenager) Befuddled, and in the Christmas spirit, Teenager!
Mwah! xoxo
 

"Am I strong too? Maybe, but not always."

I always find it funny how people can say how amazing a person is- but never truly know why. Or say 'poor you' and not know why or how that person deserves their pity. And not WANT to know, at that.
I was reading a piece on Sonia Rykiel, a French designer who has Parkinson's and a very inspiring woman- and there was a small paragraph which I found the most inspiring and one I could strangely relate to. Hodgkins is nothing like Parkinson's- it's a longer disease and harder one and I am in awe of the brave people that go through it with hope and optimism... and of course I am inspired by her determination and hope and ability to be so normal in a situation that isn't normal!

Anyway, this is what she said;
"What I don't like is when they say: "Oh, isn't she fantastically brave?" I'm not brave, I'm not fantastic. I'm like any other woman. I'm unhappy. I'm difficult. I'm sad. Am I strong, too? Maybe, but not always. There are days when I don't want to see anyone. The most important thing you learn? You can live with it."

And she said later on in the article as well-
"My ambition? For everything to go on like it is right now. I have no regrets in life, and you know what? If I could, I'd go back and do it all again."

And in a funny way- I think I would too... I mean- I know it was a horrible, horrific, scary, painful, scarring experience but it left me with such a different outlook! I look at everything totally differently now! I don't stare in curiosity and surprise at people who are disabled or different looking because I know what it's like to be stared at like that...And I say what I think is wrong because if I don't I'll regret it and Life is for living, not shying away and conforming to the crowd.

'Life is too short.' I'm not too sure about that phrase...I don't know exactly whether Life is too SHORT or too LONG yet...I guess its different for all different people...

I start school again full time in September...I'm as nervous as if I was starting an entirely new school...I mean, I have to fit in two years of GCSE's in one and I somehow have to manage to get into school EVERY SINGLE DAY without collapsing in utter exhaustion... I am scared, and nervous...but its not whether I CAN do it anymore...it's how much will it hurt me to do it.
And well, I don't know the answer...so I guess we'll just have to see won't we!

Much Love, [and hope you are all well],
Befuddled and entirely obsessed with Batman and has actually ordered the comics and has the box set, not so bald and red haired Baldy <3 xoxo

P.S- Thank you to Phoebe, Matt, Becky and Laura for being there for me at my MRI, you are THE best friends and I will love you all until the end of time <3

P.P.S- Oh, and by the way- I've been given the all clear. I'M BETTER. :)






 

"These words are my own From my heart flow I love you, I love you, I love you, I love you There's no other way To better say I love you, I love you..."

I got to thinking today, well- more like remembering, really... Just about all the awesome times I've had with my friends...because I'm meeting up with becs and feebs tomorrow and I was Getting to think about my favourite memories with all my friends...! So, here they are! 

So, let start with the boys...

Matt H; the time when Alistair and I gave you 'water' and you spat it out EVERYWHERE!! Or in Mr Flacks lesson when you almost got my special metallic pens confiscated because you were doodling with them! :')

Matt N; the time I massacred two spiders in one lesson with your diary and you called me a spider murderer (in a nice way)! :') 

Ben; the Belgium trip in year nine when you said I looked like a jellybean in my raincoat and I said you looked like Harry Potter in yours... :')

Joe; the time when I jumped next to you (LIKE A NINJA) to get a picture with you and you didn't realise until seconds later when We'd already taken it and you ran away! Heehee, who ever heard of a milky bar kid who likes fruit pastilles ahaha ;') 

Alistair; the time we drank all the 'J2o' and kept giggling about nothing!

Tom; the La Fosca trip in year 9 when you kept doing that really funny big brother voice impression to everyone who walked by! :')

Edd; when you tried to explain the whole 911 conspiracy theory to me and I was clueless but tried to pretend that I got it so I didn't seem too dumb... :') 

Toby; When we had a long discussion about the rainbow stegosaurus and gingers and unicorns and acted like it was the most natural thing in the whole entire world (THEY ARE REAL!) :')

And now for my wonderful girlies!

Thea; the time we threw minuscule pebbles at people walking by from your bedroom window but only managed to actually hit on person, on the back- and they barely felt it...but we ducked dramatically every time anyway! :')

Laura; the time we went to the marina and the diamonds concert and a girl came up to me when I was wearing an obvious wig and told me how much she liked my dyed hair, and then going home and playing the game of life and talking until half 4 in the morning when you had to get up at 8! :')

Eleanor; in English all last year when we had to do an interview with a famous person and we chose Jennifer Aniston for her role in Marley and Me...and neither of us had seen it all the way through and just had to wing it with some of the info or just use Wikipedia :') 

Peebs; That day we went to London Zoo and laughed at the penguins, and giggled at the meerkats and 'awww'd at the seals...and how I was mesmerised by the fact you had your own debit card and thought you could buy the whole shop if you wanted too (turns out you couldn't...) :')

Becs; the time we went to the races all dressed up and it poured down with rain but we got a free goodie bag and had our heels sink in the mud, and when we first got there it was raining so much we just bought some crisps and chocolate and hid in the human part of the horse box away from the rain to eat them! :')

That's about it! If theres anyone I've missed; I'm sorry but I'd didn't know you read this... x

Anyhoo, all is pretty much okay here...please keep praying for Bridie and Daune! And just keep praying! And keep praying some more! Or send your thoughts out to them! Depending on your religion :) 

They will be missed, I know that <3

Much love, Befuddled and back from cornwall AND REALLY NOT SO BALD BUT INSTEAD A VIBRANT RED HEAD Baldy <3 x x x

Hurting...

So many people dying, so much death... I don't see how so much pain and suffering yet so much happiness and love can all fit into just one planet. Then again, I guess you can't really have one without  the other, can you?

"A mind that is stretched by a new experience can never go back to its old dimensions." Oliver Wendell Holmes, Jr. 

So what if I'm a different person? As so many people take such joy in pointing out to me...

Yes, I'm bitter, cynical, less tolerant and slightly more sharp tongued than I used to be...but you try going through what I went through and come out of it the exact same person you were before!

Explain to me, why? That's all I can think about...if there is someone watching over me...why would he let this happen? Why would he let me lose almost everything? Why would he do this to anyone? Not just me...

I was having an, um, argument with a friend...and that friend didn't understand how you can feel alone yet not be alone (as a lot of people don't understand).

I mean, sometimes I feel a bit like I'm surrounded by people who are trying so hard to help me and understand...but they just..can't. And I so badly want them to be able to help but I can't help what I feel... It's not like this thing has a booklet, or some kind of script that I'm meant to follow! I feel like even the safest places of my mind are being invaded by the demons that are my thoughts... 

Sometimes it's just so overwhelming! I don't get how so much frustration and anger at the world can fit into one girls brain! 

I hate the uncertainty!

I hate the fact I can't do what everybody else around me can!

I hate that people judge me, yet they don't get what I've been through!

I hate the fact I see people smoking every day and know what it's like to get the end outcome and know I didn't have a choice but these people did! 

I hate being pushed until I break!

I hate feeling weak, and unable!

I hate being pitied, like I'm abnormal!

And I hate feeling so frustrated!!

But none of that is going to change, no matter how many people tell me I'll be back to normal soon. I'll always be 'that girl who had cancer'. 

What is the definition of normal anyway?! Who gets to decide what's normal and what isn't? Why should you be normal just because you blend in to the background?

And why is it such a crime to speak your mind? Why is it so bad to try to show someone they're making a bad choice? Why is changing a crime? I won't change myself for anyone. Not even the 'new me'...I have lived this life being who I am, and I'm not going to change that just because a couple of people don't like who I've become. 

You call me selfish. And yeah, I guess I have become a bit selfish. But that's what happens when you're forced into survival mode. 

But you know what? YOU'RE the selfish one for not stepping back just one minute and thinking maybe, JUST maybe I might be totally torn up or broken on the inside....and stopping to think maybe you should just leave me alone this time. That maybe there's a reason I'm so upset and it's not just me being irrational. That you shouldn't take such a straight approach to things all the time, and that maybe I'm not being "inconsiderate", I'm trying to speak my mind even though I know it may be a bit harsh. And believe me, I wouldn't if I knew it was ridiculous. And just because I have concerns does not have some secondary meaning like I must be messed up in the head, or I love you, or I'm having a bad day and taking it out on you.

So, next time. Think. Because believe it or not- I stop and think about things before I say them to you. Theres lots I haven't said.

(that wasn't all about one person...just people in general. So sorry about the rant!) 

Anyway, sad and serious now. I would please like you all a prayer or send your thoughts out for Bridie and Daune. Two wonderful, inspiring people who both died in the last couple of weeks. I KNOW they're in a better place now, and I loved them both dearly though I didn't see them as often as I would of liked because of circumstances... RIP, I hope one day we will all see each other again.

Much love, befuddled and frustrated but now red haired, Baldy <3 x x 

P.S- this blog is now for Becky and Phoebe...who are my angels and who, without, I would have crumbled and gave in long ago... and who, both, are the closest to understanding than anyone in my life... And who have been there when I've cried and not cared if I've gotten mascara on their shoulders, and have stuck up for me even if they thought I was wrong because they knew I was hurting...I love you both and I do not know what I would do without you...You are BRILLIANT<3 x x x x