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!