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!