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

"An increase in light gives an increase in darkness."

"An increase in light gives an increase in darkness." Sam Francis

"And introduce an element of cynicism and darkness into it and just realize that we're all vulnerable. We are humans. There is a finite end to this life and we're all going to face it and a little silliness can help." Alan Thicke


I guess as things get a bit better, my anxieties rise...I think it's because the better I get, the more relaxed I get; The higher I have to fall. 
Okay, people say that facing up and admitting your fears so I guess this could be a post about my ridiculous phobias! 

1. Arachnophobia- I HATE spiders, they have too many legs and creepy eyes and fangs...

2. Eremikophobia- I hate sand possibly more than I hate spiders...I hate the way it sticks to you. Its weird and creepy and feels HORRIBLE.

3. Ladelphobia- you already know this one, its Ladybugs. They're just unnatural, okay?

4. Achluophobia- Fear of darkness...I don't like it, it's smothering.
5. Agateophobia- Fear of insanity...just because my mind tends to be a bit overactive.
6. Agliophobia- Fear of pain, nearly everyone has this one, exluding masochists and weirdos.
7. Atychiphobia- Fear of failure...again, most people have some form of this...
8. Athazagoraphobia- Fear of being forgotton or ignored...I want to be remembered, I guess...especially if I die 'before my time'...
9. Autophobia- Fear of being alone... especially at night, for me. I don't like being alone much, I like to feel needed. 
9.  Bacillophobia- Fear of microbes...
10. Bacteriophobia- Fear of bacteria...this is like number nine- I HATE germs...I reaaally don't like being immuno-supressed. 
11. Cancerophobia or Carcinophobia- Fear of cancer...this one's kind of a given...
12. Catoptrophobia- Fear of mirrors, mostly either when Im alone or in the dark. I don't mind them half the time...
13. Claustrophobia- Fear of confined spaces...like MRI's... *shudder*
14. Clinophobia- Fear of going to bed...not SO much anymore...but still. If it wasn't essential, I wouldn't sleep.
15. Coulrophobia- Fear of clowns...come on, they're just plain creepy...past midnight they're just. not. funny! [matt ;) ..]
16. Demonophobia or Daemonophobia- Fear of demons...who isn't scared of demons? Especially our own demons...
17. Emetophobia- Fear of vomiting...inevitable, considering how much throwing up I've done over the past 9-10 months...
18. Hadephobia- Fear of hell...everytime I think of myself dying, I always think about redemption and my mistakes and whether I'll go to Hell. Because although I like reading books about it, I'm really not sure I'd like it as a life choice...Or death choice, if you like..
19. Molysmophobia or Molysomophobia- Fear of dirt or contamination...I hate germs. Eugh.
20. Necrophobia- Fear of death or dead things....specifically death, or my own death- or zombies. 
21. Nosophobia or Nosemaphobia- Fear of becoming ill...I never want to be ill again...
22. Oneirophobia- Fear of dreams...Dreams are dangerous. 
23. Radiophobia- Fear of radiation, x-rays...not x-rays, but radiation causes cancer.
24. Russophobia- Fear of Russians...not being racist. Just a bad experience.
25. Satanophobia- Fear of Satan...only twisted people WOULDN'T fear him..
26. Sciophobia Sciaphobia- Fear of shadows...I don't like them. Especially when you can't tell where it's come from.
27. Somniphobia- Fear of sleep...it's not a good thing, I know. But sleep hasn't exactly given me a real reason to love it. Exept from the fact I need it...
28. Spermatophobia or Spermophobia- Fear of germs...I carry antibacterial gel EVERYWHERE.
29. Thanatophobia or Thantophobia- Fear of death or dying...like number 20, but actually dyING this time rather than just death.
[From here on I don't know the names of them...sorry!]
30. I am scared of disappointing people too much
31. I am scared of changing who I am into someone people don't like, or don't like as much. Or I'm worried that I've already changed...
32. I am scared of even numbers...don't even ask, I just can't stand them.
33. I'm scared of not knowing whats going to happen. I like to be in control.
Thats all I can think of right now... haha, ALL. 

I am soo superstitious, also...I HAVE to nod, and make the people with me nod, seven times whenever I see a lone magpie. I HAVE to wear black socks on Friday 13th. I HAVE to have as many odd numbers in my life rather than even. Even numbers freak me out.

I have probably shared waaay too much information, but hey- maybe this'll come in handy to my enemies *wink wink*!

Anyway, sorry it took so long to write, I feel a bit empty at the moment. Especially of inspiration.
Lots of Love,
Befuddled and really not so bald anymore Baldy <3 xoxo


PS- This piece is dedicated to two people...
1. Matt Hunter ;), an awesome friend who deserves a lot more than a Phobias post dedicated to him :')
2. Peebs Allsopp, who is also legendary and who I have always relyed on to just be crazy with me ;)
-Both of these I can forget the world with and just let go, but they also listen to me when I break down or when I complain or just when I need them...So for that I am eternally grateful...Thank you- and I would do the same for either of you, I promise :) <3 Love you guys!

Adjusting the Sails

"The Pessimist complains about the wind;
The Optimist expects it to change;
The Realist adjusts the sails."

I slam the upstairs window shut with a little too much force and a pain shoots through my finger and up my arm. I wince, and shake it out a bit, before collapsing on my parents King Size bed next to me, stomach first.
With a deep sigh, I roll onto my back and stare out at the moon outside. Tonight, it's a full yellow circle against a dark, navy sky. It's not yet quite pitch dark, even though its ten o'clock.
I close my eyes and imagine myself a sleek female werewolf, leaping out of the window and bounding off up the gallops outside our house- maybe even snacking on a horse or two.
I skip through the green fields, my eyes like nocturnal goggles- seeing anything and everything.
I feel the brambles scratch at my fur, pebbles fly up and hit me but I lift my head to the full, yellow moon- my eyes widening in awe and then narrowing wickedly. I was going to kill tonight. The sky grumbles stormily and I slip through the trees, silent and deadly- stalking fluffy, innocent sheep.
I growl furiously as I jump forward, my teeth spreading into a wolfy grin. Mid air, I find myself falling, pain shooting through my chest. What is this? I look down, searching for a stab wound, a dart, a silver bullet- anything! But there's nothing there...and as another pain shoots through- I jerk back to the real world, and my real life. Hissing, I sit up quickly and clutch my chest- panic rising in every inch of my body.
"You're okay, you're okay..." I whisper, but I didn't even fool myself. Still, I felt a bit better as the pain subsided. I look at Truffle, who had barely moved a muscle through it all.
"Selfish cat." I mutter, turning the light off, and head downstairs.
Taking one last envious look at the moon, I head towards the bathroom.
Wiping the cold water from my face, I look at the reflection staring back at me in the mirror- wondering how the hell all of this happened.
The cancer, then the leg problems...I turn away from the sad girl looking back at me, nothing like the powerful werewolf woman I had imagined.
Sighing again, I lean against the wall and tip my head back- my thoughts buzzing in my head like a swarm of bees, occasionally stinging when they felt like it.
One jumped out at me, more persistent than the rest. The Queen Bee, I guessed.
The chest pains, the night sweats, the snappy mood swings...the sadness. All my old symptoms were starting to come back...
'It's just the aftermath of chemo.' Positive me reassured me.
'The cancer's back- you're dying!!!' Negative me screamed frantically.
'Get it checked out, just in case. But don't get worked up about it.' Realist me murmurs softly. I ignore them all and choose to do what I always do with all my problems. Pretend they're not there until I absolutely can't ignore them any further.
Kicking the bathroom wall in frustration, I take a deep breath and put a smile on my face. The first attempt looks hysterical, so I tone it down a bit and head downstairs.
Bursting into the family room, and seeing noone in there, my facial muscles spring back into a frown and I flop onto the sofa, pinching the bridge of my nose.
Knackered, I let my eyes drift shut and try to forget all my stress- if just for now.

Much Love,
Befuddled and ABSOLUTELY KNACKERED [but attempting to fight through the tiredness] Baldy <3 xoxo