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