Brian Lobel- Amazing

Second time in one night, you lucky people (or unlucky).

I was just trawling through Jimmyteens, as I do a lot of the time, and noticed this was finally up. Find Your Sense Of Tumour made cancer a lot easier for me to deal with- and now they've put up one of my favourite talks from the whole event!

The Amazing Brian Lobel

Click on the link and watch the most amazing performance ever- he really made me comfortable with cancer, and for that I thank him.

(I EVEN GOT A PICTURE WITH HIM)

Befuddled <3

I'm now a dropout

So I gave in. I left school, because it was far too difficult for me to continue. Only the rest of this year out, mind. I think that maybe school was fine for me before I was ill, but it maybe is not the best place to be when I am trying to recover. Ending up back in hospital twice in one month was enough to prove that. Also- I don't think many people realise the emotional struggle that goes on in school. Not only do you have the stress and pressure of all the essays and the exams looming at the end of the year but also the tiredness that comes with doing work into the late hours of the night and having to get up every day and walk around the school while cramming as much knowledge into your brain as possible at the same time as worrying that you're going to completely fail one whole subject because you don't get one topic! Its very stressful.
Getting back to such a public setting was difficult for me, I do love being sociable but at the same time I enjoy being at my computer with my writing up in front of me, or settling down under my little blue reading light with a cup of tea and my battered copy of The Magicians Nephew. I'm not at all a recluse but I'm not used to upset or arguments on a big scale anymore, really. Near Christmas, before we were about to break up for the holidays, there was a big upset involving me where a couple of "friends" were quite hurtful, and those "friends" are no longer in my life but it still shook home to me just how much I had been through and how fragile I was emotionally, how I still am. I'm not saying they were the entire reason for me leaving, because they weren't- but they tipped me over, having that sort of negativity isn't the attitude I need to be able to get to a place where I'm comfortable and recovering well. But, in pushing me over the edge, they forced me to quit- which was something I should have done months before so I really should be thanking them for that small positive amongst it all.
Anyway, out of all of that I decided that I am now going to focus on me, and getting me better and back to myself. I sound like the Twinings tea ad, but I mean it. It's time for me to finally wake up and see that actually, maybe following a doctor/nurses advice isn't such a bad thing after all! You all know how I like to bend the rules in my favour as much as possible, either that or I just ignore them- I must be a wonderful patient! *doctors rocking back and forth* Ooops!
It doesn't help that my insomnia has gotten completely out of hand and I'm now awake until 3 or 4 in the morning every night just lying there, thinking. It does help I have so many books, though, and that I do love to write. It's how I get things done, but I'm fast losing hours of my day to sleeping in or not being able to function through sleep deprivation. I went to the doctors and was given a drowsy antihistamine, which didnt work, and was given sleeping tablets- but they didn't work either and I've now not gone back in the fear that maybe they'll give me something that will make me horribly groggy! Ugh, sedatives.
So my days mainly consist of endless snacking (a full 3lbs has been put on since I quit), writing, reading, watching Modern Family, and various other programmes (including late night sex and the city), and planning my days out to every detail. Recently I decided to go on a healthy eating plan though, not just to lose weight but also just to get my health sorted and do whatever is in my power to prevent the cancer coming back! So far all of my scans have come back as clear, but there's always that niggling fear in the back of my mind that it's going to come back and I'm going to have to go through all the horrific things I went through all over again. And having gotten so much of my life back now, I don't think I could cope if it did.

Another thing I have started is my 101 Things To Do When You Survive list! A wonderful ex-cancer patient called Greig Trout has his website of his list, and I got inspiration from him to write my own. Just because I'm not dying doesn't mean I shouldn't have a list of things I really want to do! So, I have written the first 39, and am quite pleased with my lists so far. A lot of them I can do quite easily, but quite a few I don't know when I'll be able to complete them.

I'll update again soon, and show you at least the first twenty of them, my nosy loved ones.

Much love to all you beautiful people,

Befuddled x

Happy 2014, Everyone

I'd like to say, 'A New Year- a new Me'- but I know that I just don't mean it. I never do, resolutions get more and more self improving and I never actually keep to them. I wish I did but I think keeping to 'Eat less chocolate' is being a little harsh on myself.
We're all a little harsh when it comes to resolutions though, I suppose- always looking at our faults, for things to improve in our personalities or bodies, when really we should be celebrating that we made it another year.
Life is difficult, and surviving it is a bloody great achievement, I think. So for everyone who is suffering an illness- congratulations on making it to 2014. And I don't just mean the cancer's and the auto immune's and the blood disorder's and whatnot, but the mental illnesses too. The depressions and the social anxiety's and the schizophrenia's, and all of you wonderful people. And to all you others too, the carers, the ones dealing with loss, or stress or actually the ones who are happy, the ones that remind us that it is strangely possible in this life. You've made it through another year too- and celebrate that tonight because though it happens every 365 days- it is an amazing achievement EVERY time it comes around.
                                             Happy 2014.

On a more personal note, to everyone who made it possible for me to be celebrating this.

To everyone who stuck by me this year (again), thank you, for everything. I wouldn't have made it without you. To the ones that left- you missed one hell of a ride.
To the friends that put up with the late night freak outs or the sad phone calls and the mood changes and the moments where I wasn't the good friend I should have been, it means so much to me that you stayed. You gave me courage.
To the family (and those close friends that aren't legally family but you are to me) who rang and messaged and kept me in your hearts and prayers- thank you. Every time you rang, or sent cards, you gave me hope.
To the baby sister, the one who never complained when I had to be put first, who had to watch me scream in agony or throw up and pretend to not be scared, and help. To the girl who had to grow up so fast, and who always showed nothing but love to me, even though sometimes I was perfectly horrid to you. You were so so brilliant, you beautiful girl, and you gave me strength.
To the parents- the Mum and Dad who had to watch their little girl go through all of the horrors that I had to go through, who had to worry that maybe they didn't get to keep me forever and who had to deal with all the tearful nights, the 'I can't do it any more' days and the months of me not being the daughter they knew any more. While everyone else gave me strength, hope and courage- You kept me alive.
And finally- to me. Because I survived. I SURVIVED. I am proud of that, no matter how small or big a victory it is to anyone else. Someone said to a friend of mine recently- 'Lily isn't the ONLY one in the world with cancer'. I know that's true, and I have some beautiful fighting friends that I have met and kept along the way- but just because I am the only one does not make my experience less painful, less awful or less amazing that I won it in the end. I am not the only one, and I only wish more were in the position I am in now, but I can say now that I am going into 2014 with fabulous friends, a brilliant boyfriend, fantastic family- and a tumour free chest. To all of you who made this even possible- 2014 is for you.

I leave you now, with the final words of the ninth Doctor:
                       "You were fantastic. And you know what?
                                    So was I."

Wishing you all a very happy and healthy New Year.
Always, and indebted.
B. Baldy x

In the beginning there was... anger, apparently

At the beginning of all this- cancer, I mean- I used to be so horrible to everyone around me. Like, so selfish and nasty and would snap at everyone and get really annoyed if I didn't get what I wanted. I was particularly horrible to family and friends (my folks, mostly) and I do regret that. But I hope that they know it wasn't me. Well, it was. But it wasn't- if you see what I mean. 

I think cancer can do that to a person. I was just so angry at what had happened, so angry that I had lost EVERYTHING- so angry that I now saw some things that I was perfectly fine with before, but suddenly didn't accept. I don't think I ever stop to think what other people were losing around me, or by acting so pathetically that I was causing them to lose ME.

Then when I was given the all clear for the second time, I had this strange sensation that I was missing something. That I wasn't ready to let go of the cancer, that I had lived with it for what had seemed an age and it was MINE, that it defined me. I remember crying, crying because it was over but also crying because I wanted it back. None of the horrible parts obviously, like the infections or the pain or the sickness and definitely not the fatigue- but cancer somehow gave me purpose. Like I had something to fight/fight for suddenly. Well, until I got a chest pain one afternoon in school and then the paranoia that I would have to do it all over again kicked in. Didn't love the cancer so much after THAT.

I suppose when I was re-diagnosed, I had this panic that I would be exactly how I was before and lose friends because of it (actually, turns out having cancer loses you friends anyway, no matter how you try to be nice) or that I would not actually be able to fight it and forever be known as the girl who was horrible right before she kicked it from cancer. That's why I decided to be better, to try to think of other people and get out more rather than lying on the sofa feeling utterly sorry for myself. It was sort of like a do-over of my cancer experience. I mean, I hated having cancer half the time; the infections, the agony, the staring in the street, the hair loss, all of it was horrific and I wouldn't ever wish it upon anyone or ever go through it again- but it's part of me now, and I'm glad I acted like I did the second time round (for the most part). Cancer doesn't define me, but it did make me who I am now. Hopefully that's a better person, a nicer person, but only time against number of friends will tell that (joking). Right now, in this moment, among every other moment from now on, I feel like I can fully live without my cancer. Not without my 'cancer friends' that I met along the way, or without remembering what it was like, or how I got through it, but just without that tumour and without the chemo. It seems strange saying how I can FINALLY live withOUT it, but I think that any way of life becomes normal if you live it long enough- and although it's nice being better, truthfully I miss some of the days where I only had to worry that I wasn't going to make it home from chemo in time to watch the Kardashians, or that my biggest stress was that I had slept through Made In Chelsea while in hospital and they don't have catch up TV. And I know that they weren't my only worries- like I had the 'will the neuropathy come back' or 'will I be sick with this one' or 'will I be in pain forever' or even the 'will I die' at some points, but all of them seemed normal to me, and getting back to normal life is much harder than leaving it, I've found.

I'm glad I'm getting back now. It's nice, it's like coming home after a long trip and being jet lagged and knowing you have to unpack all the suitcases is overwhelmingly stressful but you're happily tired because nothing can take away the fact that you're HOME.

In the words of Gloria Gaynor, I WILL Survive.

Love to you all (or whatever is left of you), Befuddled <3

P.S- I wrote this at 3am so please don't take any of what it says to be anything less than my subconscious rambling about the silliest things. Much Love, B x

*Strrrreeeeeesssssss*

Hey everyone, I'm not sure how many people are still reading this as I haven't posted in so, so long. But to the remaining few- Hallo!
Not all that much has happened since I last wrote, to be perfectly honest. A lot of work, and I mean A LOT OF WORK is being done at the moment in my room. By me. I think my eyes are sore from how many things I've had to read and re-read. *Streeeeeesss*
We went to Ireland in half term- for Halloween- which was nice. Although, I have to be honest and say that actually I didn't feel too, TOO safe there being so far from a hospital since I was only three and a half months out of treatment. I also missed my familiar room and all my routines so it was a little difficult. Though actually I had fun- and it was nice seeing all of my relatives.
I came back and had a whole WEEK off school (which, in itself, was hoooorrible- I was going stir crazy) because of, what they found in the end was, a vitamin D deficiency. Brilliant. So that brought difficulties as I can't swallow tablets so I'm now on drops and crushed up tablets. Then, I had a fertility appointment to check how my hormones and everything were doing after treatment- and that included a pelvic scan and some blood tests. So in that week alone I had three blood tests on three consecutive days- what a nightmare!! Then it was just work and school, trying to catch up on everything, although I did have to drop an A Level subject and accept the fact that I was going to have to do three years of sixth form- I think that's the best thing for me though. I'm way less stressed and tired than I was before, and managing a heck of a lot better.
And then, a couple weeks ago, I had my fertility results appointment. Unfortunately they told me that I won't actually be able to have my own children and that my ovaries have basically shut down. I think it was one of the worst things I have ever had to sit through, and for about a week after I beat myself up about it- going through lists of things I would trade for it back in my head at night, or wondering if I could have done something different and it wouldn't have happened, or chosen the other less damaging treatment when I was given the option at fourteen. Of course, now I'm thinking slightly more rationally, I realise that my fourteen year old self would not have been thinking of having kids or keeping her fertility- but rather just keeping fighting and giving herself the best chance possible. So she should have been, and I don't really regret that decision at all. I guess in those low points, I swung between feeling as if everything had been taken from me, or that I was just a failure as a girl. One thing women are able to do- conceive, have children- and I can't even do it. I know its irrational, and actually completely against half of my feminist views to think that that is the one thing women are really good at, but hey ho. I don't think people my age, my friends, understand, just like they don't understand what I really went through during treatment or how hard recovery is. Its one of those things where you have to really have seen how much someone has lost, felt how someone has felt- I guess you just have to put yourself in that persons position. And I know that's impossible for some people, for most people even. I don't begrudge anyone that, but I think that friends- even though they don't understand, even though they don't GET IT, they're there because they know how much it hurts YOU.
Anyway- enough of the heavy heavy. I went to the christmas fayre this weekend, the same one I wrote about a couple years ago when I first began my treatment. All I could think when I was there was that I had walked the same path through the same stalls, smelled the same christmassy smells at the beginning of my cancer journey and that I was back again- but better. Stronger. A new person, really, I think. I'm more mature, but I don't take myself too seriously. I even got my face painted in New Look! It's always a high point, having people stare as I- a sixteen year old sixth former- sit and get a snowman painted on my face.
I love Christmas time though, and I really always feel like the Christmas Fayre is the beginning of the Christmas season (I was listening to christmas music weeks ago but shhh). The other lovely thing in November was that I went to London with my boyfriend, to see all the christmas decorations and to visit the christmas sections in Harrods and Selfridges. We got lost once (on Oxford/Regent street) but apart from that it was an AWESOME day and we didn't even feel the cold or how far we'd walked- it was too exciting! And then in the evening it was all topped off by snuggling at home watching the DOCTOR WHO 50TH SPECIAL WHICH WAS ABSOLUTELY AMAZING AND TOM BAKER WAS IN IT AND IM NOT EVEN GOING TO GO ON ABOUT IT BECAUSE I'LL COME ACROSS AS A TOTAL DORK.
Anyway- it's been an up and down couple of weeks, and I'm sorry I haven't written in so long, and I probably won't write for a while because I have so much work- but stay with me, loveys. I'm not going anywhere.
Lots of love, Not at all bald anymore but definitely still Befuddled <3

"Life moves pretty fast... If you don't stop and look around every once in a while, you could miss it."

The title is my most favourite Ferris Bueller quote, and I thought it seemed appropriate for this post, not sure why, I just felt in my heart that it was right. Hmm... I'm not really sure how to start this one, folks. I'm sorry I haven't written in a while, I just find it hard to put down on paper what I feel, and writing has to come from the heart- and my heart only has so much energy at the moment.

I suppose the first thing to mention is that I'm CURED! Its wonderful news, news I have waited far too long to hear, and every time that I think it in my head I get butterflies at all the possibilities for my future. 

The thing is, I think far too many people think that once I get the news that I'm clear of cancer- I am suddenly better and able to do everything again. Let me tell you with certain clarity that THIS IS NOT TRUE. In my honest opinion, I think recovery is harder than treatment. Treatment is awful, don't get me wrong... But I know how to deal with treatment- throw up, lose hair, aches and pains, fevers, sniffles, throw up, cry, shivers, flu-y, throw up. Once I got used to treatment, I wasn't so bad at it. Sure, I never enjoyed it and felt like crap the whole time I was on it- but I knew what I had to do. I had to fight, always. But then, when the urge to keep fighting every minute of every day is gone, its an odd kind of useless 'I don't quite know what to do now' feeling. I love being off treatment, and love not feeling like hell, but it's like going through all the doubts that you get with becoming an adolescent all at once. I'd been putting them off while I was on treatment, when I was on treatment all I could think of was fighting for my life. Now I feel slightly purposeless, like I'm trying to find my place in a world where everyone at the same level as me has already chosen theirs. The exhaustion doesn't help, either. At some point I'm going to have to accept that my body isn't up to the same capability and that I have to stop striving to match everyone else's strength. Unluckily for my body, that point isn't right now nor is it the very near future.
It's really quite odd, not being 'sick' anymore... 'Life is hard, and awful' and blah blah blah, and sure, I hated the fact that I was sick, but fighting for my life gave me an attitude and a mind that I don't think I could have found any other way. Before I got sick, the littlest things used to bring me down, wish I wasn't here anymore, wish that I had never been born- but when there was the possibility of it being taken away, it's like something clicked. Things are different now, I stop to look around now, take in my surroundings, remember that even when I'm exhausted and wish I could just crawl into my bed and never come out again, that I am living, that I am BREATHING, and that it's the most wonderful thing in the world. And I was thinking this the other day, and I came to the conclusion: Knowing that I have endless potential, and that I am surrounded by people who love me, and who believe in me and knowing that I will live (hopefully) a long and completely unpredictable but definitely human future makes me not care about feeling like I am a bit useless. Because you know what? Just because I am not fighting for my life anymore, does not mean that I am not fighting. And let me tell you, I will fight every day of the rest of my life for my place on this earth. Because that IS my purpose, I realised. It's the very thing that I've been fighting for the past two years. Just Me. Everything that I am, everything that I will be, everything that I could be- even everyone who makes me who I am. And if there was something that I learnt from having doubts, is that I always have the option to pick myself up again, and I'm definitely sure I will have to- but that's life, and I'm going to LIVE every minute of it.

The only way to repay the people who helped me through this, and who held my hand through my pain and wiped away my tears and stayed up to ungodly hours talking to me- or the people who had to sit and watch, and could do nothing, or even the people who sent silent support and prayers, the only REAL way to repay them is to show them that I appreciate what they helped me save. And I promise you all that I will do that- I'm going to shine, folks- and its because of you that I am. If you truly feel like you are special, you ARE special. And to all of you, you made a glittering firefly out of a average blue bottle.. So thank you.

My love to you, all you beautiful humans,

Befuddled, and feeling more glow worm than firefly because it's so bloomin' late, Baldy x o x o

(Also, to anyone out there that has felt the same way as me- You. Are. Worth. The. Fight. And you will shine so brightly, just don't let the bad parts of life stop you from staying around long enough to feel the good parts. Everyone glows, it just takes a while to really shine.)

Danger: Krispy Kremes

Hello everyone!!
I'm so sorry I've been so lax with writing my blog. I have been a bit busy with high dose, and then trying to reassemble my life. Slowly but surely it IS happening. Listening to songs like "I'm coming out" by Diana Ross helps, makes me feel motivated and like "Yeah.. I AM coming out!". Though not like that, I mean coming outside, and even half the time I don't even go outside. It's really a metaphorical thing.
So. Things I have been doing. Not much, to be perfectly honest with you all. I had a sleepover with my girlies, and that was amazing and I enjoyed that immensely. Though I have decided that krispy kreme doughnuts are definitely a hazard when put in front of me. Seriously, man, those glazed are just to die for. And also, that watching scary movies with a girl that spooks easily and has a deafening scream is definitely not a good idea! Mostly it's just been getting used to all my appointments at adult oncology/haematology. And internet shopping. It's really an addiction.
I'm already getting ready for school- sixth form this time- and I can't wait to start my life again! All non uniform, and brain challenging school work here I come!
Also, I sent my application for 'Find Your Sense Of Tumour' in. I would love to go, it really just sounds so wonderful! And I would love to meet others and hear other stories. Cancer's a lonely disease, y'know.
A while back I did some filming for Jimmyteens on a project called 'One Week in Cancer' so if anyone has any curiosity as to what I look like on video, then here is the link:
http://jimmyteens.tv/2013/08/01/one-week-in-cancer-meet-the-owic-filmmakers/

Anyway. I will definitely post more often as I miss you all and the general excitement of sharing my seemingly boring life(at the moment, anyway)!
Love to you all,
Befuddled, and still frustratingly a Baldy <3