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...