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