Hello 2018!

I suppose I should stick to the obvious introduction of Happy New Year! I hope you all had a great Christmas, I don't know what else to say, the year of 2018 had almost seemed like a myth, a legend, when I first started writing this blog. I hadn't come up with enough material for it to last this long! Looking back at 2017 it was the most amazing year of my life so far. I finally found my feet on this earth. 2017 was the year I turned around and said no to living with cancer. I stood my ground and shouted "you Brian, are going to have to live with me!" I've flown half way around the world, swam over the barrier reef, jumped 15,000ft from the air. I've discovered new places, met new people, tried new things. I celebrated my 21st Birthday and fell in love with someone who makes me laugh not every day, but every minute. Laughter is the best cure, for anything and I am feeling absolutely great.

 I have my next MRI in a few days. After this one my doctor may move me to 6month scans rather than every 3months. To be quite honest, although this is obviously a great sign, I don't know whether I'm quite happy with this change yet. Yes it will mean that the scanxiety if less frequent, but it will strip away some of the reassurances. I'm going to have to learn to believe in myself a bit more, and keep trying to tame these phantom symptoms. I'll be one more step closer to being a "normal" person. My orthoptics tests have now been moved back to once a year rather than every few months. This is because my recent test a few day ago has shown that my eyes have not only got much stronger again, they are nearly back to normal. My double vision when looking left has almost gone and the damage that was visible in the back of my eyes, can no longer be detected. They have no idea why this is happening, but it was a great way to start the new year! I came straight home and applied for my driving license.

Its been great to do so many amazing things with friends and family over the festive period. It has been so different to last Christmas. I didn't spend the whole time under such pressure to get my last Christmas right. I intend to be around for several more. This Christmas I went searching for my decorations, only to realise that they were all mixed in with my parent's things. I soon remembered thinking that I would never need them again, thinking I was putting them in the box for the last time. Its amazing to think just how much my mindset has changed. I'm about to pack them away very neatly, so they are ready for the next one. I'm looking forward to getting back to work on Monday. Its great to be back in the classroom especially as its more fun and less paperwork than i'm used to...

I cant wait to see what else 2018 has in store for me and Brian!

The Plank

This is my second draft of this blog post, words have become a struggle, I no longer feel like a cancer patient, I'm feeling out of touch with the DIPG community, the faces are now mostly new to me. Most D-pigs that stared this journey with me, have now left us. It just puts into context how lucky I am to be sat here in October 2017 writing this, something I never thought possible. My life is incomparable to how it was this time last year. October 2016 saw me sat in what felt like a bottomless pit of depression. This blog was one of the few things that kept me going. To see the reaction to the few grains of positivity I managed to muster encouraged that positivity to bloom and become something I could actually lean on. The power of words have always amazed me, to think that my own words have had so much power to spread positivity and awareness on a global scale... astonishes me. When Life Gives You Lemons has now reached 17,000 page views. I am so proud of this blog, I will keep posting and at some point I will try and write that book i have been bugged about on so many occasions! I am inspired by the works of Adam Blain, author of pear shaped, and Sophie Sabbage, the Cancer Whisperer. As tragic as it is to type funny brain cancer book into google... its worth it. Maybe When life Gives You Lemons will appear in the search results one day.

I've managed to keep incredibly busy recently, I haven't even done much painting. I have managed to discover the life of a normal 21 year old. I have my friends, family, my own place, a job, a boyfriend and even more shockingly... a gym membership. Other than the odd interruption, I feel like I have the definition of a "normal life" which I still consider an absolute miracle, as contradictory as that phrase may be, its true. My biggest struggle with my mental journey is my belief in the great pattern that seems to rule my life, the concept that when anything good happens, something bad will follow. It has been suggested to me that perhaps my diagnosis is what is is, no one is sure why, but maybe these bad things that happen are occurring to balance out me still having this incredible life.  A bit like having to go to the gym to allow your dominos habbit! Another life struggle of mine...

Following this, I have my Oncology review on Tuesday and I have never been more nervous about hearing what Brian has been up to. Right now I have more to lose than ever. I feel fine but that feeling in the back of my mind is back. Maybe it is just the time scale that is scaring me. Its the scanxiety that will just never go.

I have learnt a lot recently. I feel so much happier, the support network I have around me is finally complete. I have something I thought was impossible. I've learnt not just to laugh, but to laugh loud, dance as if no one is watching and love as if there is no chance of pain. My life since my diagnosis has felt like walking along a long plank. Sometimes it  wobbles, sometimes I slip, there are holes in it and at some point it will end. It doesn't matter how fast you go, how cautious you walk, because the path will always remain the same. The difference now is that my head is held high, and my eyes are open. I'm less scared of falling, and am looking forward to whats around the next courner.

I'm Okay

So here goes, I've finally brought myself around to writing this long overdue blog post. It's not because I haven't wanted to, it's because I haven't felt the need to. This blog was never intended to turn into a wanna be Bridget Jones' Diary. It's a blog about living with cancer. Recently I haven't felt like a cancer patient. I've just felt like me. Although if anything that makes things even more tragically entertaining. After thinking about it hard, I've felt selfish. I have DIPG, but I'm okay. That's not right, it's not meant to happen. I know my current state and simply my existence sparks hope for many families but I can't help but feeling like I'm bragging when I simply say I'm okay, Compared to children all over the world, with the exact same disease who are not. Ive told my oncologist on numerous occasions to do whatever tests on me that they can that could potentially help find cures or just understand things better. Anything, I really want to help. Any DIPG parents/fighters reading this...please contact me with any questions, give my name to your oncologists. We are in such an underfunded battle that some things need to be done ourselves. There are so many theories about the disease out there that are carried only in whispers. Many things to me throughout life have seemed normal. It's only when I read the words of others about the disease that I make a connection. Small things like hearing high pitched sounds in my head. I thought that happened to everyone, turns out that it doesn't! I've also discussed the potential of having DIPG for 21 years. Yes I'm asking, what if I was born with it. My reason being that since birth, I have always focused predominantly with my right eye.its easier for me to turn my head left and focus out of my right side vision. It's something I do naturally. My first stand out symptom was a muscle weakness in my left eye, caused by the tumour restricting the muscles. What made me start doing it if it wasn't DIPG, another complete coincidence? These things are worth talking about! They may seem silly....until someone else says something similar.

There's something I've been meaning to tell you all about for a while and to be honest I'm still not sure quite how to phrase it. So I'll just tell you what happened. I went to see my enthusiastic orthoptician, (fancy optition) the one who likes to throw himself across the room in his wheely office chair, the way you did when you were 4. He spins his equipment round as if he believes he's a flame thrower. He makes me laugh! Especially when he has to check my answers because my sight is better than his. He also made me laugh when he was testing my double vision. He holds a pen directly in front of my nose and moves it around my left side. He says "tell me when it's double" it normally takes less than a second before the pen starts to split into two images. This time it took three "is it double yet"s and two "are you sure"s before I said "well that's weird." In short, my muscle weakness in my eye is improving, my double vision is better by a good few degrees. The nerves could be repairing themselves. Without treatment or medication....something is getting better. It doesn't mean I'm cured, it doesn't mean Brian is going away. It does mean that Brian is being kind enough to let things start working again. I've also stopped acupuncture, psychology. I'm living in my own place again with one of my best friends, I'm looking at jobs, I've even started seeing someone. Everything I once thought of as impossible, is beginning to happen. Including my own existence right at this moment. I'm 21! The age I never thought I'd see. My birthday was so overwhelming this year, I haven't been that happy in a very long time. I have such incredible, genuine friends and family around. So many memories were made, for better of for worse. Which reminds me... Part of my outfit for my birthday were the sandals intended to be part of my wedding outfit. I'm so so happy to have worn them for my 21st instead. A far better occasion! I'm better now that I ever have been. Don't get me wrong, I still have my down days. I have an MRI tomorrow, hence my actual current state is crying into a bowl of strawberries and Nutella watching Notting hill. But hey, I'm okay! 

Brian goes online dating...

I'm going to write about a couple of odd bits and pieces in this blog. These are just little things that I've been thinking about. Since returning from down under I've been feeling a lot less Ill. A lot less like a cancer patient. I've been feeling more like the old me. I don't have to go into hospital that much at the moment so I have decided to start dropping my psychology appointments down. The same goes for my acupuncture appointments. I'm trying to make my life less 'cancery' (brilliant word). However, when I do go into hospital I like to make sure I have a good walk round. Up until my hand operation I was absolutely petrified of even being near hospitals. This comes from very emotional memories of time in hospital with my mom. I'm now completely comfortable with it. People often associate hospitals with death and dying. In my opinion, they are the complete opposite. There is no place quite like a hospital for witnessing LIFE. The QE is like a hive of activity. Doctors, nurses, porters, patients, paramedics. Such a buzz of conversation, all so caring and entwined in each other's lives. A hospital is a place of passion and I often just sit and watch it all. On another note... There's no other place where it is deemed socially acceptable to go to costa in your pyjamas... Or even worse one of the hospital gowns. There's short routes I can take to where I need to go, but I always walk the long way. The tunnel of doom is a great observation point. I frequently visit the YPU (young persons unit) which is where I would go should I need to stay in hospital. It's empowering to walk down those corridors. It's still very much a reality that one day I may be wheeled in there and not walk back out. It's taken a while for me to become more at ease with this. But I can now definitely say... I like the QE. I missed my train the last time I left the QE. I missed the train because I didn't walk fast basically. I could have ran and got it easily. But I've realised recently that I've never actually spent time wandering round the QE. Why do I rush everywhere? I brought myself some late lunch from the shop and went and sat beneath one of the trees in the grounds and read my book. It's a pretty good view from there. The QE, to me, always looks like two big ships docked in the middle of Birmingham. 

The last time I was in hospital I went to visit my clic Sargent worker. A few of us had a good laugh over my skydive video and I even inspired one of the inpatients to go and book one once she was out. After we had a bit of a chat, he asked me what my long term plan was. I replied, "I don't know, I didn't think I was allowed one." I asked what he meant and he told me he was thinking about relationships. I'm still completely scared by the last but it is something I've thought about a lot recently. I don't want to be alone forever, body eaten by alsatians and all... It's something I've joked about with friends for months. A good idea was devised over lunch around Christmas time. We were talking about how hard it would be to find someone as I have a terminal illness. We came to the conclusion that other people must be in the same situation... And bingo. 'We should set up a dating site... The slogan will be: speed dating, because you have to!' I've sense realised that tinder actually works just as well and is a lot less depressing. That's right... Once again granny Franny is getting down with the kids and I've surrendered to social peer pressure. I find it quite entertaining. I usually refer to tinder as a game, naturally. You swipe left or right and see how many points you get. Turns out I'm pretty good. You have the option to write about yourself, so after much deliberation I decided to include Brian in my profile. To my amazement he doesn't scare people off as much as I had anticipated. Parts of him must be fairly attractive! Some people have hilarious profiles, I'll share with you my favourite so far: 'hi I'm.... Aand I like to use big words to make me sound more photosynthesis' what a funny game to play! 

Back to normality!

I'm writing this blog to get me back into medical mode ready for tomorrow. I had my MRI last week and tomorrow I'll meet my oncologist for the results. I've kept this one rather quiet as for the last month... I've actually felt normal. For those of you who have never been to Australia, put it on your list. It is the most amazing place. I feel absolutely  amazing for having been. For a great deal of those five weeks, I wasn't Ill. I had no scans, no appointments at all! I had no doctors or nurses calling me. My weight has dropped again and the sun faded my stretch mark scars. I'd meet so many people who would see me as a normal person. Once I got talking to people properly, I wouldn't hide what I have, I wear it as a badge of honour, helping spread awareness. I have a rule that I don't bring up my condition unless I otherwise have to start lying about what I do back home etc. It helps stop things being awkward on both ends. I met so many people who became interested and ask questions, it was brilliant. I did however break this rule on one occasion. You may have seen that I did a skydive on my last day. The ultimate way of proving to myself that... Hey I'm okay, I can still do these things. I felt absolutely on top of the world. I did it for myself, no one else knew. I was flying back to Sydney the day after, still buzzing. A lovely woman started talking to me on the plane. I lied, incredibly naturally. I told her I was still living in London, studying. It was so easy for those few hours, to slip back into my old self. I felt normal for so long it made me feel as though Brian had never appeared. It took me a while to realise what I was actually doing and it was absolutely incredible.

Since being away I'm a lot more relaxed, I was so nervous about flying and travelling parts alone but I absolutely loved it. I've been so busy since I've been back, catching up with people and planning 21st birthdays for friends, something at one point, I believed I wouldn't be able to do. Hey I'm still going, stronger than ever and I'm now over a year post diagnosis, how crazy is that! I can't wait to tell my oncologist that I jumped out of a plane. Probably wasn't medically advisable... But mentally, I think it nearly cured me! I wasn't sure if they would let me jump, but in traditional Ozzie style, they simply said 'yeah you'll be fine' boom, sorted! 

I soon came to accept my own physical boundaries without getting stressed over them. I know I can't stay in the sun without applying factor 50every five minutes. Radiotherapy skin still frazzling. I got incredibly stressed at one point that I still can't walk fast for long distances without getting what appears to be trapped nerves in my spine. I had a couple of days feeling a bit down about it. I just felt like cancer was limiting me. As days passed I realised... I can do what I like, I can walk however I want. I said to myself that I wanted to strengthen my independence while I was away. I realised that I didn't have to please everyone else at my expense. Do something for yourself! I had an absolutely amazing time. 

I felt inspired to enjoy my experience to the full because of Danni. If you flick back to my earlier blogs, you will read my excitement upon being contacted by a young woman, exactly my age, a fellow Deepig. I remember the exact moment, and the feeling of loneliness dissolving. Upon landing in Australia, I realised that Danni had passed away. I sat in shock for a long time before simply shaking off the emotions until I had come to terms with what had happened. I found myself sat alone on a beach in Byron bay. I though of her a great deal. Not in sadness, but in a way that made me appreciate the sand between my toes. I felt inspired to enjoy every moment, I'm devastated by her loss, it had a real effect on me. It also boosted my strength. I'll be eternally grateful to Danni for reaching out to me, it felt like doing all these things such as jumping 15,000 feet out of a plane, was making her proud. I really hope that it did. 

#Dannistrong

I'm off to find myself... 🐨

I haven't blogged in a fair few weeks now, I think I'm going through an adjustment phase. I'm starting to think.. "Hang on, I'm still here, and I feel well again. What's next?" When I first started this blog I was in the mindset that I could quite possibly just drop down in a day or two. I don't see it like that anymore, I'm a bit more optimistic about my diagnosis. Because of this I have started having crazy ideas, and even more scarily... I've started acting upon them. Wednesday evening I will jet off to Sydney, travelling up the east coast of Australia and posting pictures on the way. I'm so nervous, but very excited. I'll be meeting up with friends for the majority of it but I've decided to tackle the last week alone. I think I need to prove to myself that I can still do these things. Well, I've never done them before but I mean I can still develop as a person. Cancer gave me a good old push but luckily I didn't fall completely flat on my face, I caught myself and stood up again. There are mixed feelings about my trip. Certain family members are going to just be worrying about me the whole time. Some of my good friends think I'm completely mad. My psychologist has been trying to get me to acknowledge the fact that I'm running away from my problems. Where better place to run to! I'm hoping a hug from a koala will cure me.

I'll be taking a journal with me to Australia, I intend to actually write this book so many of you have been bugging me about. After reading 'pear shaped' a brilliant book I referred to in a previous blog, I feel fully capable of writing up my own story of cancer so far. I think a good couple of chapters will be base on 'Fran and Brian on Tour!' Im incredibly worried about pretty much everything but that's just me! A small part of me actually hopes I get mauled to death by a Koala. It's a much more interesting cause of death than cancer. I'd probably even make the news. Plus it will make the extortionate travel insurance worthwhile... The biggest challenge I may face will be the passport scanners. During my marshmallow chipmunk looking phase of life, the scanners didn't actually recognise me as a face, they probably picked up something resembling a ballon with eyes, presumably being waved around by a small child. I look almost back to normal now and I'm pretty sure I look more human!

Now for the hospitaly updates, I have my next orthotics appointment tomorrow which to be honest I haven't even had time to think about! My next review is the 25th April and there isn't anything in between. Unless I do get mauled by a Koala. I have also developed a freckle on the palm of my left hand. I have decided that it is the black spot. (Pirates of the Carribean reference for all you unfortunate people that did not immediately laugh at that).

I'm going to leave this blog at that as I will try and make a couple of posts from the other side of the world. Please comment any travel tips you have!

G'day,

Fran and Brian xxx

Spontaneity

First of all I would like to say thank you for all the good luck messages before my oncology review and of course my little pressies. I was really expecting bad news this time. I was panicking right up to the review. My phantom symptoms turned into actual real life withdrawal symptoms from the steroids. When you are wanting to throw up randomly throughout the day... It causes a bit of panick. It's hard for me to determine what symptoms are caused by Brian pushing buttons in there and my body missing those horrible drugs. I called one of my best friends in floods of tears a few days before the review as I was feeling utterly awful. (I have to say 'one of my best friends' else they fight over who I'm actually referring to as best friend, I may just have to start name dropping). Anyway, she (hint for you) was amazing and sat and said "it's a bit of a coinkydink (yes she used this work) that your symptoms are coming up just before your review isn't it" but I've already told you this. Anyway... Point being, this calmed me down until my review. I usually have time to stress and panic sat outside my oncologists door. This time we were called in early and I didn't get a chance to think about it at all. My clinical nurse popped her head round the door, she smiled which was a relief. My oncologist then jumped up and did his awkward handshake. I think greetings between oncologists and patients should be a bit more exciting. I'm going in for the high five next time. Especially as it was GOOD NEWS. "Good news for a change" ha! That was my blog title after I got engaged and it turned out to be the opposite! This definitely is good news this time! Especially after my oncologist revealed that he would now be happy to re-radiate me should anything happen. This gives Brian a second chance by putting him on the naughty step again. Let's hope he remains I a good mood for a long time and it's not needed!

As far as further treatment goes, there simply isn't any. My only option at the moment is to travel for cologne for immunotherapy. A new country, a lot of money, no guaranteed results and why temper with something that isn't currently causing an issue. We have agreed to just remain under observation for now. It's still something I think about regularly. My friends have all stated the exact lengths they will go to for fundraising. I have recently discovered that no one quite loves me enough to swim the channel. I love my friends...

I took a picture of Brian this time. A few close friends have seen him. A lovely waitress at Pizza Hut has also glimpsed at him whilst being proudly displayed on my phone screen at the table. I bet she thought it was an odd looking ultra sound as I said "so there is Brian". She was probably thinking 'who the hell would name their child Brian these days' ah well, better than her knowing who Brian really is. I'm just glad she didn't inquire!

I had a really rough psychology session this week. I'm surprised I got to the room without picking up a rare disease! I went to the cancer center desk as usual but the receptionist laughed a little as he said "ah turn right out of there and someone will meet you". I found such a dodgy looking lift. I got in it with a nurse. She immediately said "oh god this is a bit dodgy isn't it" to which I wittily replied "at least we are already in a hospital" I was quite proud of that one. The lift seemed much more appealing after the doors opened. I must have ventured into the part of the hospital where they are doing frankinstine experiments with all the spare body parts! A receptionist met me to let me in (yes you needed a key to get in or out.... Not dodgy at all!) she got me a chairs hole I waited in the dodgy corridor. She kindly placed it away from the toilets. I was incredibly relieved to see my psychologist silently wave me in. I walked into a room, with a hospital bed in the corner and two chairs. A very cruel trick. She actually said it was interesting to see my reaction to a more medical environment. It reminded me of my moms hospital room before she died. We ended up talking about the similarities between me and my mom. This seemed most relevant as I have recently been invited to look at being genetically tested. I absolutely crumbled for the entire session. Before leaving, I asked how bad I looked to which she just replied "yyeeeaaahh" which was not reassuring. I finally escaped the dodgy building via the dodgy lift and ran into the cancer centre toilets to discover my bright red eyes framed by black mascara patches. I sorted myself out and put my headphones in full blast to stop me from crying again, and made a break for it. The song chocolate was first to come up which reminded me of a certain someone and such simple but comforting memories of driving around in the car. I immediately felt a lot better and headed for the corridor of doom.

Now, the corridor of doom is my name for the link bridge between the two hospitals. I call it this as it appears to go on forever. At certain points along the wall there are oxygen stations, presumably to give you a little boost if it is needed on your treck to the other side. The corridor is always buzzing with doctors all scrubbed up scurrying off to surgery. You will often see some poor sod all wired up and being wheeled bed bound between the chaos. There is usually a few porters with empty wheel chairs walking up and down. I'll ask for a lift one day, I presume they are available just Incase your legs give way on your journey.

Anyway, after my all clear... I'm debating a spontaneous trip to Australia in the next month or so. If you can give me any suggestions of what to do or where to stay, please message or leave a comment. I have actually managed to find travel insurance too. I've been quoted £78 for up to 18 days which is incredible. All my fellow DeePigs should have a look at this one. It's a specialist cancer insurance company called 'Insure With' I hope it's useful for you.

Much love x

The meltdown countdown

I'm writing this blog as a post meltdown de-stresser. I'm so tired I've slept for the majority of the past few days. In ways this is a good thing as the tiredness is a side effect from coming off the steroids. I am finally drug free! The nurse rang me up last week to tell me I had passed the test and my steroid production levels were fine. The reason they could have been affected so much is partially because my body may have just learnt to rely on them and also because radiation to the head can sometimes hit a gland that is behind your nose which can also affect this. I should be back to normal in a couple of days but right now I'm shattered! I'm getting so stressed and wound up about my review, I'm having what I'm calling phantom symptoms tricking me into thinking I've gone into progression. My back aches all over, I feel sick, headaches, double vision is worse, I'm convinced my right sided weakness is coming on again. I've had a quiet day at home today so inevitably the melt down happened and I finally gave up being sat crying on my own and sent a couple of distress messages. Within minutes I was laughing down the phone at my best friends ability to make me feel like a complete idiot in a way that I actually appreciate. She is perhaps the only one capable of doing this. Listing my symptoms and suggesting the most probable cause which is an alternative to Brian, and they all make sense. The important thing is I believe her, there are very few people I actually listen to when it comes to "Your just winding yourself up" as I feel so few people actually understand. It's so easy to say "you'll be fine" but it takes a great deal of trust and understanding to actually say it with a result. That's what is important to me, understanding. With such a complex condition and me being such a complex person, it's hard to achieve. So well done you! Sometimes I forget how well people know me, I have a few friends that always manage to shock.

I just took a pause there for a couple of hours. I needed to go and be cheered up by a two year old. I recommend you all get one! I realised that I'm writing purely medically and my psychologist told me I tend to do that when I'm struggling to talk emotionally so I'll just admit to you all that I'm a bit of a stressed wreck at the moment.  I'm finding myself needing to plan, wether that be future trips away or surprise days out. I need things to keep me busy and I'm still very much aware of the whole making memories need. I think the most upset ive ever got about my illness is when I admitted I felt bad for what everyone will one day go through as a result of my illness. Because of that I'm most happy when I know I'm doing something for other people. I guess I've always been like that but it's becoming ever heightened the more I doubt my remaining time with people.

I needed a bit of inspiration for this one. I brought myself a funny brain cancer book (yes they exist) on Amazon that I've just started. I've genuinely never laughed out loud reading a book before. It's not often I compare myself to 44year old men but Adam Blain is absolutely hilarious and I feel like his view to brain tumours and all things hospitaly very similar to mine. Ill share with you his best paragraph so far...

"To top it all off, I was then moved from North Middlesex Hospital to Queen Square a Hospital in an ambulance. Ambulance! Now I knew I was in trouble. In fact, ambulance is the third worst means of transport from this perspective. Only beaten by air ambulance and hearse. I am only counting for these purposes means of transport that are actually plausible. So I exclude being rolled down the road in a large industrial steel drum labelled 'fresh body parts not suitable for transplantation"

Yes some of you will be getting this book for birthdays! it has also inspired me to actually start planning my own book as so many of you have suggested. One update on me is that I'm hoping to move back out in a month or so to gain a bit of my much loved independence, well much needed! So I'll look at buying a new laptop when all of that exciting stuff is a bit more sorted. I can start writing properly then. I was a bit worried about living alone (for about six months until a good friend of mine comes to rescue me). I went to Manchester last weekend to visit an old friend from school and college who let me into a little secret. The key to eradicate loneliness when living alone is to buy a giant teddy bear and name him. If any of you want to buy me a spontaneous present....

So my review is the 31st Jan, 4days away. I've planned my days until then to minimise the meltdowns. It's basically just become a game of pass the Fran between friends now. Glorified babysitting! The last thing I want to mention on this blog is that I'm keeping an eye out for trials. The trial in Bristol I got rejected from for being too old, (rude!) has now extended to London. But guess how much..... It'll cost 60 grand for an operation to effectively give Brian a straw. And another 6grand each time I want to feed him some medicine. That's the easiest way to explain it. On top of that there are oncologist fees and scan fees. It's ridiculous that people in my position are quite literally having prices put on their lives, most of these people are young children and it's just so frustrating. Here I go with the statistics again but 1% of cancer funding goes to brain tumour research. 4% to paediatric cancer. It's cruel. Got knows how much DIPG funding actually gets! I've had a request to spread out to you. DIPG fighters should now be referred to as "Dee-pigs" or that's how you pronounce it. I thought it sounded ridiculous at first too but annoyingly it sticks... Let's see how many of you pick that up! You will hear from me again on the 31st with results. Until then please continue to get in contact, if I ever needed cheering up its now. Let the pre review meltdowns begin!

Sherlocked

Well I'm still alive! I've officially beaten the DIPG statistics as of Sunday. This was a big moment for me as the available statistics are the only indicator I've ever had of the severity of Brian's presence. I'm fully aware that they are inaccurate, especially because of my age but it was still a big moment for me. Few people think it's silly and I shouldn't put myself down because of them, but that day was a celebration and a bloody good one at that. I woke up to a few 'your still alive!!!' Messages and received a few more throughout the day. I spent the day at my little sisters fifth birthday party during which, me and my 2year old sister snook off for some celebratory icecream and hot chocolate. A funny mix I know but you try saying no to her! cocktails at zizzi was next on the list, but not with the two year old, I upgraded my company... Slightly. We then went to the special edition of Sherlock at the cinema which was amazing although a tough couple of hours trying not to scream or cry. Incredible though! A necessary McDonald's pit stop on the way home to where a bottle of champagne sat waiting until midnight. We decided to wait until midnight Incase any busses decided to hit me or bears decided to eat me. With my rate of luck those were two probable endings to the evening... But I made it. The champagne was a Christmas present, so it hadn't collected any dust unlike the bottle of prosecco I had for my birthday. I finally opened it last week. When I first had it I decided to save it for when I moved into my new house, then I decided I'd save it for my hen night.... So I then decided I'll have it when I can say I am no longer stressed. Which is why last week I came to the realisation that I will forever be stressed and stuff it lets open it. No I didn't drink it alone... I had a lovely night with two very good friends. It's nice to be laughing so much again!

We went on a spontaneous drive to the Brecon Beacons last week. We visited the same place I went gorge walking with the CCF and I found the waterfall that I jumped off. It was incredible to just walk for hours reliving some of the best memories I have. I'm gaining more and more of these precious memories everyday, this is now the priority in my life and you readers feature in so many of them. I have been overwhelmed over the past couple of months by the number of messages out of the blue from past friends. They all start with "not sure if you remember me" and go on to say "I've been wanting to message for a while but didn't know what to say" so I'm just going to make it clear to all of you now. If you can read this blog via my Facebook... I remember who you are. Secondly, it doesn't matter what you say to me, if your unsure, just message me with a "hey" and I will start the conversation. The power of those messages is undescribable, they really make my week! It doesn't matter what footprint you have left on my life, just confirming that I have left a footprint on yours really means the world to me. So if you are thinking of getting in touch, do it! I'm open about absolutely anything and there really isn't anything wrong you can say other than 'get well soon' I cannot describe how painful those words are to people with a terminal diagnosis.

Back to the medical updates, I had an endocrinology test today. This was checking that my body is able to produce enough cortisone (steroid) naturally. I had to stop my medication yesterday which has made me incredibly tired. They took some blood today before giving me a really painful injection. They waited half an hour and took another blood test. The injection was to encourage my body to produce cortisone. The comparison of the blood samples will show wether my body is able to do this. If I've failed the test I'll have to continue my medication so fingers crossed. I'll have the results next week.

In the spirit of Sherlock I'll end this post with a quote from the recent season that really meant a lot to me as it incredibly relevant to the way I'm trying to process this diagnosis, and the message I'm trying to portray.

'Stress can ruin every day of your life, dying can only ruin one'

First Blog of the Year!

I'm well aware that these blogs are occurring at a higher frequency than usual. That's because so much is happening right now, the Christmas period has been incredibly tough for me, incredibly tough. Especially as my psychologist has two weeks off so all of my crazy deep dark emotions have just been bundling up with no where to go except into the ears of close friends and into this blog. I'm back to see my psychologist on Friday. We shall see if she has quite gotten over the Christmas card I gave her. I've only told a few of you about this but it's quite a proud moment of mine. Many of you know that I had one of my paintings made into Christmas cards this year, the one of the two penguins. I decided to give one to my psychologist as a thankyou for keeping me partially mentally stable! She was absolutely overwhelmed and got quite emotional before turning to me and saying "so what does this represent to you?" And oh wow I have never thought so quickly in my life. I immediately blurted out "leadership" (one penguin is following the other). To which the reply was "oh of course, the first penguin is slightly wobbly which I presume represents your illness" mini fist pump as I left the room, absolutely nailed making that up on the spot! But hey maybe it is subconsciously true and not just the fact that I found a pretty picture in a magazine to copy, who knows....

(This is going to be a long one so bear with me) one of the hardest things I've done this Christmas is going to the carol service, the church is right at the end of my lane. I feel like I need to show my face every now and then to make up for the chaos caused over the wedding that never happened, plus to stop half the village presuming I'm crawling around half dead already. I was fine until I saw the vicar. He clocked me whilst closing the service and paused mid sentence and stared right into me. He came up to me afterwards and asked how I was, I made my usual reply of "I'm alright" to which he said "are you sure?" I blinked through the tears as hard as I could. He quickly picked up how close I was to having a meltdown and so he laughed and just said "you were always far better than him anyway" which made me laugh as I'm sure vicars aren't meant to say that!

Christmas Day was absolutely made by having my two little sisters around, I scored some major big sister points this year, I survived the day without feeling down in the slightest, it was nice to be surrounded by such a sense of love. I slept in the play room that night to make space for family members staying over. I was awoken by my two year old sister. Her toy kitchen set was in the playroom, she brought me some plastic birthday cake for breakfast and got into bed with me. It's moments like that that make me so happy. New year came quickly and I made a brief post, I had a bit of a meltdown after writting that one. It's so easy to ignore everything going on around you sometimes that you only need a slight reminder of something to have all of your emotions run back at you like a stampede. Imaging that scene from lion king... That's what it feels like. It only takes one spook to cause a full blown disaster! The night was saved by two of my best friends. They fully understand my humour and know exactly what I need to cheer up. Many a death joke was made and as the countdown arrived in the club they screamed 'happy new year..... Your STILL ALIVE!' And for that I absolutely love them to bits. It suddenly hit me that I was still alive, it's 2017, I'm okay, in fact I'm good and I'm spending such valuable time with people I love so much. To top it off, stumbling to get the essential chicken nuggets and lemonade for a certain someone... I ran straight into someone else who I hold very dear in my heart. I love little coincidences like that. I had an amazing night.

Every year I always buy myself a really nice diary, I didn't this year I was petrified it would end up an unfinished book. Today I looked at a calendar I got bought for Christmas. Ironically it is a calendar of the northern lights! (It was brought before my trip and was handed over apologetically with a but of a giggle). I thought stuff it and it's now hanging on my wall. I'm only going to fill it out a month at a time and each day I'm writting something that made me smile. I'm also going to scribble quotes over it from friends and anything I've seen online etc. So far on there I have "keep swimming Dory" and "get emotional and you will end up in a bin bag at the end of the garden" if you've made it this far reading, comment some more quotes to help me fill up my calendar of happiness! Be creative! You should know my humour by now!

I'm busy planning what I want to do with my life at the moment, I've had crazy ideas about buying boats and everything so I'm narrowing down my choices. I'm just making sure that I fill my time with things that make me happy. Plenty of spontaneous road trips, go to that fancy restaurant, go on the merry go round, have anothe bottle. Just do it because why not! Statistically I have 12 days left to live so please drive carefully! The countdown has begun. Although it's silly statistics, it still means something to me. I also need ideas of how to celebrate! So far the evening is being filled with a cinema screening of the Sherlock season finale and the company of on of my favourite people in the whole world who I definitely bug too much with my soppiness! Plenty of medical dated this month too, steroid tests, orthotics, blood tests, MRIs and oncology reviews. I'll keep you all posted but I'm feeling good. My emotional are all over the place but it really does help receiving all of your spontaneous, often drunken message a of support. Now comment with some lines to fill up my calendar and suggestions of how to celebrate y beating the statistics! So much more I want to say but my iPad is having a breakdown! Sorry! X

Dear 2016

Dear 2016,

First things first... I win! After your many attempts to kill me off this year I am still alive. I'm looking out for any hazardous objects dont worry! 11hours remain of which I shall be wearing a full body protection suit. Don't you dare hit me with a bus now! You made me cry last night, you've made me cry plenty this year, you e made me angry and you have made me question if this life is worth living. It's clear now that it most definitely is. You have been the absolute worst year of my life, you have broken me, but with that you have also taught me how to stand back up again when the whole world crashes down around you. I've learnt how to dance in the rain. I've discovered how much of an impact these words can have on the lives of others and that is the weapon I fight you back with. Everything you have thrown at me has revealed the people in this world that truly love me, you have brought them back out of the shadows and eradicated those who turned out to be the most poisonous of all. So thank you but can you please now just F*** off!

Yours sincerely,

Fran and Brian.

Happy Christmas from Me and Brian!

Well, Happy Christmas! Thank you to all of you who have read and supported this blog. Especially thank you to those who have come back into my life and made up the silver lining of this awful year! I've been stressing recently, worrying that this may be my last Christmas. I've realised today that it doesn't matter, all you can do is just enjoy what is happening right now and do it to the best of your ability. Look for the small things and make the most of what you have. Right now I'm sat around the fire with my family. (Pause as 2year old clambers all over me) I've spent the day entertaining my little sisters, I don't know who's the bigger kid! It was nice to be able to properly jump on the trampoline with them again, without fear of just fall in through it. Actually being able to stand up on it is a miracle to me now! I took the eldest (4) out for a walk and she took her bike. As predicted she got bored half way through, so I said give it here then, and she ended up chasing big sis on a bike that is quite literally just higher than my knee! Stuff it, have fun! I had a great time in Cardiff earlier this week, highly recommend a visit! I haven't been 'out out' or drank in excess since the week before my diagnosis, and I didn't hold back. I even brought out the rose tequila! Shout out to the duke of York and staff for that one! It's a must try I promise you. We went to perhaps the cheesiest, emptiest club ever but it was great, we made it our own! They even played come on eileen (favourite) it made me so happy to hear that! To prove my new found spontaneity, my parents and best friend kindly recieved a picture of a chicken nugget at 3am, big achievement for me! I was then described as looking like 'death in makeup' and a couple of you have been lucky enough to see the before and after shot! Definitely worth it. I insisted on finding the coast on the drive back home... We found an estuary and a cafe that did an all day breakfast. That was good enough for us! I cannot describe how amazing it is to be starting to look and feel like myself again. The hundreds of drunken selfies on my phone must be evidence of this. It really is nice to have your make up done and look good agin for once! My energy levels are going back up again, thanks to my acupuncturist! I thoroughly recomend accupuncture in general as it really can make a difference to such a variety of 'problems' and it really doesn't hurt... All the time. I will explain more about this once I've had another session or two so I can thoroughly explain the benefits in particular to you DIPG fighters. My last mention in this post is to wish my mom a happy birthday. For those of you who don't know, she passed away from an unrelated cancer 11years ago. I usually feel very emotional about this day but this year I actually feel,closer to her than ever. In the past, to think of memories of her has been painful, yet now it's a real comfort and inspiration. I'm always told how alike we were, I wasn't however hoping to take it this far! But it can be seen as just another way to connect us. I'll end this post here and wish you all a wonderful Christmas. Enjoy every single second. I have one Christmas wish... Share my blog and let's help spread a little bit of silver lining this Christmas, help me take away the taboo of cancer and show that good things can come from the bad. When life gives you lemons...

Wine and merry go rounds

I opened my Facebook today and saw my 'a year in review' video, it started playing and the first thing that popped up... "You got engaged" ha... Well, yes. I did but look how well that ended up turning out, it practically ruined my life. So what else happened? I had my first experience of going in an ambulance, A and E, stitches, a general anaesthetic, oh and I got diagnosed with cancer. I think it's fair to say that a review of my 2016 is generally quite depressing. But when life gives you lemons... I have managed to raise one hell of a lot of money for research into fields that before 2016, I was completely oblivious too, I have inspired hundreds of people and I have reconnected with fold friends that perhaps I may have otherwise never spoken to again.

So for the medical update... I'm eating again (steak today which was stupidly exciting to not just want to throw up). I'm feeling a lot better in myself and hurrah my clothes are starting to fit again. I've had the apointment through for my steroid blood tests in January before my MRI and oncologist review so January will be a busy month for me. January is also significant as if I'm healthy in January... I've done it, I've beaten the statistics.

I'm going to be all emotionally honest now and say that although for DIPG the statistics are so inaccurate, and it's silly to focus on them, the January date is very much at the forefront of my mind. My viewpoint of the whole diagnosis has changed dramatically over the past month or so. This is something that so far I have really only managed to discuss with a couple of people including my therapist. I no longer believe that I'm going to die soon. When I was first diagnosed with DIPG I was completely oblivious (subconsciously) to the fact that it was a terminal condition. My depression and realisation was very much triggered by things going wrong in my relationship, when that ended I have never felt more depressed in my whole life. This made me feel like I only had months to live, quite simply because at that point I wasn't interested in life. I thought if this has happened now, it will only get worse so what is the point? I was wreck less in throwing away possessions such as clothes that I'm realising now I may actually want again one day! I just simply didn't believe I would ever need flip flops again, or my size ten clothes. However, now... I'm talking about my 21st in June and I feel okay. Life is simply a game and I'm back to winning. I'm happy and I'm laughing again. Coming home and being hit by Christmas decorations still completely threw me as I'm still totally unable to picture that far into the future of next Christmas. Putting a lot of pressure on the fact that this may very well be my last. But it also may not. I can't explain any more about that emotion as I simply don't know how I feel at all. I spent my therapy session today talking about it and it's still very unclear. Especially as my therapist completely threw me today. She actually asked.. "How are you feeling" and wow I was shocked... A question! And it's direct. I love the little mind games!

So that was a tough paragraph to read I bet? But it's showing improvements in my mindset for sure, partially thanks to all of you reading this that have got in contact in one way or another. You really keep me going. If your feeling down, you can always do what I did today, drink some wine and go on a merry go round!

Iceland

Iceland was absolutely incredible. Most things planned didn't seem to go our way but as always we made the most of what we had. It was actually warmer in Iceland than in the UK, so not much ice or snow about. Just rain! The bad weather also meant that the northern lights tours were cancelled every night we were there! So we tried whale watching... Twice, and saw absolutely nothing. We kept on falling asleep beneath our five odd layers of clothing. It was a good laugh though. We looked pretty dam sexy in our overalls...The best Icelandic experience by far was our trip to the blue lagoon. It was dark when we got there and it was absolutely magical watching it get lighter. The water was so warm and it really was blue. Apparently it has healing qualities... We shall see. We went to see the geysers and waterfalls which was also amazing. So overall a mixed trip, some moments of disappointment but we both had an amazing time. It doesn't matter where you are in the world, or what you are doing, it's who you share the experience with that makes all the difference. For those of you who don't know mine and Richards relationship, we met in high school and quickly bonded over days spent rowing at school. There were always the jokes that we were 'together' as we spent most of our high school years completely inseparable. I really don't know what I'd do without him. I wouldn't be half the person I am today if it wasn't for him. I'm going to shut up about him now as he is probably reading this feeling far too smug! My point is simply to value your friendships and make memories at every opportunity you get. Any bad situation can be made better with the right people by your side. I'm told so often that I'm strong, but really it's the people holding me up that are strong ones, I'm just lucky enough to be surrounded by a fair few of them! I was originally quite worried about going on this holiday as I was stressing about pressure to make memories. I felt a lot better after someone told me to stop worrying because this holiday symbolises me taking over life, and not life taking over me. I'm doing whatever the hell I want and I should feel good about it. Wise words from yet another incredible person and I think everyone should live by that concept. Just go and do it, and do it for yourself! We intended on an early night last night but ended up getting four hours sleep before nearly missing our flight! This may potentially have been my fault but hey ho I can blame it on Brian. He's my card! We got there in the end anyway. When the lights are off, there is something about lying in darkness that makes you have the most random conversations! It's amazing the memories that can creep up when you start reminiscing. Laughing so much you can't breathe! This then developed in to deeper conversations that I can only manage with a couple of people. It feels incredible to be able to get those darker thoughts out and feel comfortable about it. I think it's important to begin to learn of ways to express these emotions because they are just so important to your whole way of thinking. I got home today (in the freezing cold) I had a lovely time giving out presents to my family. I got the girls some lovely snow globes. Erin's lasted five minutes... But luckily she was thrilled enough by the bubble wrap it came in. After that I cried for about half an hour. Mostly because I'm so shattered. I was suddenly hit by all the Christmas decorations that set off a load of emotions. I'm not sure how I feel about Christmas this year. I was gutted my holiday was over and I felt a bit a lone again. I need some ideas for my next trip, I'm thinking Scotland as I'm still determined to see the northern lights, any suggestions?

To sum up.. I had an amazing holiday.

A bit of a mixed update

I don't normally post in the daytime on weekends but I'm writting this to avoid having a meltdown. Not over any of the usual things, because I've been sat on the floor for 15minutes wrestling a draw back into its shelf and I've decided it's now just going to live on the floor. It also turns out that my blog gets more hits on a Saturday. The most I've had now is 600. More and more of you are becoming nosey and my sad little DIPG community is ever expanding! I've now been in contact with 5 people my own age. It's amazing to think that just a couple of months ago I thought it would be impossible to find 1!

I'll start with my medical update. Some of you may have noticed that I had a minor op on my toe recently, that's not a big issue, it's been an on growing problem for 7 years and that was probably my twenty something operation! But it worked and I'm no longer hopping. The problem was made worse just because of all the steroids I have been on. I'm still not off the hydrocortisone as I'm waiting to have that steroid production test. I Cant tell you much about that because I'm clueless myself. I did go for my eye test on Wednesday. That was interesting as it turns out I have quite above average vision. My double vision to the left is caused by an 8% muscle limitation in my left eye. In non medical terms this is because Brians fat arse is sat on the nerve that controls this. My center alignment is very slightly out as my right eye is trying to overcompensate for this. Because my eyesight is so good, the eye tests will only be used as a way of tracking progression to save all the MRIs. I'll go every couple of months to have the perception of each eye mapped out, if the maps change its an indicator of change which means I can be rushed for further testing. I'm still not eati ng a great deal, my GP reckons I'm producing too much stomach acid but I feel less sick. Im Starting acupuncture in December to help manage things like this. The plus side of all this is that I'm losing weight quite rapidly and I'm now back to a size 14 so I'm feeling more like myself!

I'm still going for psychology appointments at the QE. Most people go for about 6 sessions. Well I've already had six and she has me pencilled in until January so she must think I'm clearly quite interesting. Or messed up, whichever description takes your fancy. It's becoming less awkward but I still find it hard to start the conversations. Before I went yesterday, I met up with someone I feel incredibly comfortable with. This relationship is built on strong senses of humour which makes it incredibly easy to joke about all the more painful elements of my life. It's great because it means I can actually talk about them. I then ended up sat on the train in a trance like state just thinking about all the things said but in a different light. This made for a very deep and interesting psychology session! It just goes to prove how much easier life can be with a bit of laughter, even if at some points you have to take a moment to process the reality of the situation.

I'm off to Iceland on Wednesday! We are incredibly excited and I'm starting to think of it less as a 'bucket list' holiday and more of just a great experience with one of my favourite people in the world. (For now... We may hate each other by the end of the holiday!) we shall see! That's all I'm going to say for now. Weldone if you have managed to read to the end of my ramblings. As a reward for your efforts... Please comment or message me with an image/idea to take to my art class on Monday and I'll pick a couple and post you the result!

This one isn't depressing!!!

Right, I'm sat in grand central station on my way back from another little London adventure. I thought I'd sit and write this post instead of feeling sorry for myself during my usual London withdrawal symptoms! I'm sat in joe and the juice, awesome place that make a cracking coffee and you can be nosey and people watch everyone running around beneath you. Great fun! It's quite a 'cool' place I think and I had a good laugh with the barista who heard 'Fran' as 'Fred' I should have played it out! He shouted out my name for the coffee and oh god I'm pretty sure I did a 'trying to be cool wink'... I need to get out more clearly it's tragic. So yes'm in a comedic mood, I've had to force myself to be this week as there have been some significant dates I've been trying not to have a melt down over. I've avoided it so far with the help of a giant porn star martini and some good company. We had a great time at the 99 comedy club in Leicester Square, a great night out I can highly recommend. The most I have laughed in ages it was a welcome change! Our hotel was... Interesting, good old travelodge next to a giant building site. I must have slept okay as apparently I have started talking in my sleep. This is very worrying particularly because I was apparently banging on about an award from an English teacher (not a clue) I guess I could have been talking about stranger things. I still surprise myself with my oddness. Off to psychology tomorrow and I'll see if I can catch out my psychologist again. It's great fun as she isn't meant to ask questions... It becomes a game to me to catch her off guard and trick her into a random conversation. (Simple things hey) then off to Oxford/ Hogwarts to see my bestie. She cracks me up all the time by how brutally honest she is. She won't mind when sharing part of our conversation, she said 'I'm glad you just look fat now and not on a load of drugs' love her! Sometimes... I'm going to leave this blog short and sweet as it's actually not depressing for once! Mixing it up... Love to you all and please keep contacting me I'm loving hearing from all you 'strangers'. Your not strangers, if your reading this then you will have been in my life at some point and helped shaped my story and influence the person I am in any way, big or small. Me being

im basically superwoman...

So here goes, it's a lot easier to write when you are given some questions! In fact, that is one thing that my psychologist has picked up on. I often need to be asked how I am feeling in order to tell someone I am struggling. I find it incredibly hard to initiate a conversation about myself. My psychologist says it's as though I need permission to talk about myself. Something I'm working on anyway! Let's start at the top of the comments with experiences. First off... Iceland is booked HURRAH! wheels up on the 30th Nov. We have so far booked a northern lights trip, whale watching, blue lagoon and golden circle tour. I will obviously tell you all about it when I get back. I'm incredibly excited but also a bit nervous as this is my first big 'bucket list' adventure. I'm becoming more and more aware of why I'm doing these things, because I have cancer. But hey that's my excuse for everything now so stuff it I'm just going to enjoy myself. Next comment, what would I like to do? Anything animal related, I loved my safari experience and would love to do something similar again! I'd love to take my family to Disney land, Paris would be great and that's something I think we all would love! I just want some more crazy experiences under my belt, so any suggestions please let me know. I've already done a fair amount of crazy things in my life so far. One of the best still has to be jumping off a 30ft waterfall. (Congrats to Fi, I think one of the most interesting questions I've had so far is yours). When someone is going through an illness that requires hospital treatments, the focus tends to be on the patient, there is little consideration about the people actually keeping your friend/family member alive! I've met countless doctors and nurses throughout my diagnosis and treatments but there are definitely some that stick out from the crowd. I have to say I have had all positive experiences with hospital staff so far. I think the funniest person I have met in hospital was actually the porter who came to get me for my first MRI scan. He showed up in my ward with a wheelchair. When I told him I can walk he was joking about being offended, how I was neglecting his services! We had a good laugh. I always feel way too healthy to be in hospital! I'm surrounded by people attached to breathing machines or bandaged head to toe. You can't see my illness. Brian is tucked away hiding, and in some ways I'm grateful for that. I know he's there but I don't have to look at him. I remember the very first time I got scared about what was going to happen. I was sat alone crying on my hospital bed and one of the nurses found me. She had a very strong Nigerian accent and almost shouted at me "stop cryin, I pray for you!" (You have to say this aloud in the accent to appreciate the comedic value). Since then I've had plenty of lovely people looking after me. I used to love having a chat with the guys who carry out the radiotherapy. They used to just complain they were hungry or talk about a programme that was on at the weekend. It was a reminder that this was just a normal day to them, it made it feel that way for me too. Next comment, effectively the best way to cheer me up? Definitely talking about memories. I asked you all before to comment your best memory of me. Some of the best conversations I've had that have made me incredibly happy have envolved the words 'remember when..' This is because my focus is shifted off my uncertain future and I'm instead reminded of all the amazing experiences I've had with people that have turned me into the person I am today. I'm reminded of what makes me, me. It's also a partial curiosity of how I may be remembered. So just me being nosey! The last thing I'll mention is mental illness, my experience is mostly of depression. It's something I've battled in the past and it's now crept back into my life. It sucks basically! There is a constant battle of emotions in my mind and it is absolutely exhausting. With what I have been through I thing some elements of depression were inevitable, but it's all of you reading this that give me the strength to just get on with things and try to be strong. I've had continuous messages from people from my past, they may have only been in my life briefly, but it's amazing to find out that I've actually made enough of an impression in that short time for them now to call me an inspiration. This is still an amazing new concept to me. For many years certain people have made me feel simply not good enough. I know now that I'm proving them wrong, let's face it I'm basically superwoman...

Reminiscing

Many people have asked me what makes me decide when to write new blog posts, I thought I'd start this one by answering that question. I write when I feel interesting! I will write when I have something to say that I feel people may want to actually listen to. I have around 500 page views for every post now so I'd hate to bore you all! I've had another busy week and have found myself reminiscing a lot which has really helped lift my mood. I saw the girl on the train Monday (the film... I haven't been stalking anyone) great film! That was with an good friend from my college days, back when the biggest stresser in my life was my art projects, if only I could go back to that again! Tuesday I managed to revisit some of my primary school and secondary school memories with some old friends, they haven't changed a bit and I'm so grateful of that, we picked up as if we were ten years old again. My illness has really shown me who is really there for me, some people have walked out of my life and others have come running back into it. It's a real eye opener (not that I'm recommending illness!) I've met up with plenty of old friends recently, it's really helped me find my own identity again. The changes I have been through recently have made me feel completely unlike myself, it's nice to be reminded of the people and events that have caused me to be the person I am today. The good and the bad! So in my last post I mentioned feeling sick all the time, this got better yesterday, and the cure was beer, prosecco, cider and a dash of vodka... Cured! Of course this was all in the company of some of the best friends in the world. My old work colleagues met up with me in Richmond, I love them to bits although we are all completely different, perhaps that's why we get on so well. It was so nice to be in such good company and laugh till your face hurts. It was also nice to act all civilised for afternoon tea which turned into just afternoon prosecco with some nibbles that included pumpernickel (we had to look that up too!). Of course being back in London brought back many old memories. Going back to the place I made my home was tough to process but it also makes me feel incredibly proud although I did feel a bit like a tourist again. Shock horror I accidentally stood on the left side of the escalator!! (London friends will know what I'm on about here) just digging out my Oyster card made me feel like I had gone back in time, for a split sec one it felt like everything was back to normal and it was amazing. I get this feeling sometimes when I wake up, That split second of bliss ignorance, until I rub my eyes and notice the medication on the bedside table and that I'm lying alone. That's the hardest part of the day for me. I've started playing carefully selected music in the morning to help this. My current favourite... Come on Eileen. Give it a go! The last thing I want to tell you about is the look good feel better programme I went to on Wednesday. This is set up within the hospital for women with cancer. Makeup artists come and give a class on how to do your makeup properly and skin care routines that can help your skin during and after treatments. Many of you may know that your skin reacts really badly to both radiotherapy and chemotherapy so this was useful. All the free products was also a bonus! It was really empowering when the door closed and all the wigs and fake eyelashes came off. It is a really good programme, it's true that I feel like I have lost all my confidence with the weight gain etc, it was nice to look good and feel better!

Inspirations

I haven't posted as much as I would have liked to recently, my emotions have been so up and down I have been constantly undecided as to what mood I'm in. Sometimes i actually just sit and wonder wether to laugh or cry... It really is a 50:50. The main big announcement for those of you of you that didn't see my step mums post, is that IM STABLE. this means that the radiotherapy was effective by firstly shrinking Brian, and now we know that he isn't growing at the moment. I have also come off my steroids which means that hopefully I'll lose all the weight I've put on and start to feel myself again. Unfortunately as my body is adjusting again it's making me feel quite sick a lot of the time. I'm hoping this won't last much longer. I have managed to gain contact with a couple of lovely girls my age with DIPG recently, something I never thought I would be able to do. It's inspirational to see what these people have been through as I am able to relate to their circumstances a lot more. However it is also an inspiration to see all the patients who are a lot younger than me, tackling the illness with such strength and positivity. I remember during my radiotherapy, there would always be one little boy in around the same time as me. He must have been about 6. He had a couple of really big scars on his head so obviously had some major operations. He also had to be sedated every time he had treatment due to his age. Despite all this was one of the most energetic little boys I have ever met. He was completely unphased by everything going on around him. When walking out of the treatment room, his biggest concern would be wether the tea bar had any packets of crisps for him. It always cheered me up just being able to watch him in the waiting room. Another major inspiration to me is thinking about the strength both my mom and my grandad tackled cancer with. I remember a couple of jokes they used about their illness, my grandad referring to himself as looking like doctor evil with his hair loss, my mom singing toxic when recovering from a dose of chemotherapy. Sometimes illness can make you feel so alone, especially after you have has significant others just walk out of your life. It has been important to me recently to remember those people who have battled in the past and those who are battling alongside me. Watching programmes associated with stand up to cancer has also helped. I often think my situation is quite unique having already lost my mom, but there was a story on Tv last night showing exactly the same tragedy. First the mother dying of breast cancer, then the son of a brain tumour. Cancer effects so many of us in so many different ways it's important to be open and take away the sense of taboo. It's in all these different ways and different inspirations that I feel less alone. On more positive notes... I've had a great time recently, two weeks in Devon, meeting up with plenty of absolutely amazing friends, some I haven't seen in years! The best thing I have done recently however, is a VIP experience at west midlands safari park, organised by the willow charity. (To all Cancer patients/parents... Definitely look up this charity, you can apply as long as you are under 40 and on active treatments. You can request any UK based special day and they are truly amazing). So today I have hand fed rhinos and had lemurs sat on my head. An amazing experience! I'm doing my best to make the most of the time I have and what a better way to do it than feeding giraffes bananas. Screw all these hospital appointments... I'm just going to go and live at the safari park!

Beneath the cape

I hit rock bottom today. At least I think I did (finally) I can't think of any other way to describe being sat in your gingerbread man PJs with your cat for company, watching back to back Bridget Jones and crying for four hours (give or take). I love being able to put on a brave face and be seen as an inspiration, but this blog is to spread awareness and for that I have to be as truthful as possible. The sad truth is that I actually spend a fair amount of time being incredibly depressed. Who wouldn't be! Since my diagnosis I have slowly had my lovely life taken away from me. I've lost my health, my education, my job, my home, my independence then my wedding and my fiance and with that my best friend. My life is the complete opposite to this time last year. I couldn't have predicted that in a years time I'd be sat blogging about a brain tumour, MY brain tumour. As common as the phrase is... You just don't think it will happen to you. So I have had a down day, I even ended up calling a neighbor just for some company and to stop me crying. It's been hard learning that sometimes you have to ask for help.  I have so many different people looking out for me from all different perspectives, doctors, nurses, psychologists, family and friends. Yet sometimes it can still feel lonely. One of the worst things about my illness is that I can't find anyone else my age who has the same diagnosis, we are a rare species! I'm meeting my psychologist tomorrow and a couple of friends before heading to Devon on Saturday. Hopefully I will start to feel a bit better again, I guess you have to hit something to be able to bounce back.