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!

Iceland

Iceland was absolutely incredible. Most things planned didn't seem to go our way but as always we made the most of what we had. It was actually warmer in Iceland than in the UK, so not much ice or snow about. Just rain! The bad weather also meant that the northern lights tours were cancelled every night we were there! So we tried whale watching... Twice, and saw absolutely nothing. We kept on falling asleep beneath our five odd layers of clothing. It was a good laugh though. We looked pretty dam sexy in our overalls...The best Icelandic experience by far was our trip to the blue lagoon. It was dark when we got there and it was absolutely magical watching it get lighter. The water was so warm and it really was blue. Apparently it has healing qualities... We shall see. We went to see the geysers and waterfalls which was also amazing. So overall a mixed trip, some moments of disappointment but we both had an amazing time. It doesn't matter where you are in the world, or what you are doing, it's who you share the experience with that makes all the difference. For those of you who don't know mine and Richards relationship, we met in high school and quickly bonded over days spent rowing at school. There were always the jokes that we were 'together' as we spent most of our high school years completely inseparable. I really don't know what I'd do without him. I wouldn't be half the person I am today if it wasn't for him. I'm going to shut up about him now as he is probably reading this feeling far too smug! My point is simply to value your friendships and make memories at every opportunity you get. Any bad situation can be made better with the right people by your side. I'm told so often that I'm strong, but really it's the people holding me up that are strong ones, I'm just lucky enough to be surrounded by a fair few of them! I was originally quite worried about going on this holiday as I was stressing about pressure to make memories. I felt a lot better after someone told me to stop worrying because this holiday symbolises me taking over life, and not life taking over me. I'm doing whatever the hell I want and I should feel good about it. Wise words from yet another incredible person and I think everyone should live by that concept. Just go and do it, and do it for yourself! We intended on an early night last night but ended up getting four hours sleep before nearly missing our flight! This may potentially have been my fault but hey ho I can blame it on Brian. He's my card! We got there in the end anyway. When the lights are off, there is something about lying in darkness that makes you have the most random conversations! It's amazing the memories that can creep up when you start reminiscing. Laughing so much you can't breathe! This then developed in to deeper conversations that I can only manage with a couple of people. It feels incredible to be able to get those darker thoughts out and feel comfortable about it. I think it's important to begin to learn of ways to express these emotions because they are just so important to your whole way of thinking. I got home today (in the freezing cold) I had a lovely time giving out presents to my family. I got the girls some lovely snow globes. Erin's lasted five minutes... But luckily she was thrilled enough by the bubble wrap it came in. After that I cried for about half an hour. Mostly because I'm so shattered. I was suddenly hit by all the Christmas decorations that set off a load of emotions. I'm not sure how I feel about Christmas this year. I was gutted my holiday was over and I felt a bit a lone again. I need some ideas for my next trip, I'm thinking Scotland as I'm still determined to see the northern lights, any suggestions?

To sum up.. I had an amazing holiday.

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...

Reminiscing

Many people have asked me what makes me decide when to write new blog posts, I thought I'd start this one by answering that question. I write when I feel interesting! I will write when I have something to say that I feel people may want to actually listen to. I have around 500 page views for every post now so I'd hate to bore you all! I've had another busy week and have found myself reminiscing a lot which has really helped lift my mood. I saw the girl on the train Monday (the film... I haven't been stalking anyone) great film! That was with an good friend from my college days, back when the biggest stresser in my life was my art projects, if only I could go back to that again! Tuesday I managed to revisit some of my primary school and secondary school memories with some old friends, they haven't changed a bit and I'm so grateful of that, we picked up as if we were ten years old again. My illness has really shown me who is really there for me, some people have walked out of my life and others have come running back into it. It's a real eye opener (not that I'm recommending illness!) I've met up with plenty of old friends recently, it's really helped me find my own identity again. The changes I have been through recently have made me feel completely unlike myself, it's nice to be reminded of the people and events that have caused me to be the person I am today. The good and the bad! So in my last post I mentioned feeling sick all the time, this got better yesterday, and the cure was beer, prosecco, cider and a dash of vodka... Cured! Of course this was all in the company of some of the best friends in the world. My old work colleagues met up with me in Richmond, I love them to bits although we are all completely different, perhaps that's why we get on so well. It was so nice to be in such good company and laugh till your face hurts. It was also nice to act all civilised for afternoon tea which turned into just afternoon prosecco with some nibbles that included pumpernickel (we had to look that up too!). Of course being back in London brought back many old memories. Going back to the place I made my home was tough to process but it also makes me feel incredibly proud although I did feel a bit like a tourist again. Shock horror I accidentally stood on the left side of the escalator!! (London friends will know what I'm on about here) just digging out my Oyster card made me feel like I had gone back in time, for a split sec one it felt like everything was back to normal and it was amazing. I get this feeling sometimes when I wake up, That split second of bliss ignorance, until I rub my eyes and notice the medication on the bedside table and that I'm lying alone. That's the hardest part of the day for me. I've started playing carefully selected music in the morning to help this. My current favourite... Come on Eileen. Give it a go! The last thing I want to tell you about is the look good feel better programme I went to on Wednesday. This is set up within the hospital for women with cancer. Makeup artists come and give a class on how to do your makeup properly and skin care routines that can help your skin during and after treatments. Many of you may know that your skin reacts really badly to both radiotherapy and chemotherapy so this was useful. All the free products was also a bonus! It was really empowering when the door closed and all the wigs and fake eyelashes came off. It is a really good programme, it's true that I feel like I have lost all my confidence with the weight gain etc, it was nice to look good and feel better!

Inspirations

I haven't posted as much as I would have liked to recently, my emotions have been so up and down I have been constantly undecided as to what mood I'm in. Sometimes i actually just sit and wonder wether to laugh or cry... It really is a 50:50. The main big announcement for those of you of you that didn't see my step mums post, is that IM STABLE. this means that the radiotherapy was effective by firstly shrinking Brian, and now we know that he isn't growing at the moment. I have also come off my steroids which means that hopefully I'll lose all the weight I've put on and start to feel myself again. Unfortunately as my body is adjusting again it's making me feel quite sick a lot of the time. I'm hoping this won't last much longer. I have managed to gain contact with a couple of lovely girls my age with DIPG recently, something I never thought I would be able to do. It's inspirational to see what these people have been through as I am able to relate to their circumstances a lot more. However it is also an inspiration to see all the patients who are a lot younger than me, tackling the illness with such strength and positivity. I remember during my radiotherapy, there would always be one little boy in around the same time as me. He must have been about 6. He had a couple of really big scars on his head so obviously had some major operations. He also had to be sedated every time he had treatment due to his age. Despite all this was one of the most energetic little boys I have ever met. He was completely unphased by everything going on around him. When walking out of the treatment room, his biggest concern would be wether the tea bar had any packets of crisps for him. It always cheered me up just being able to watch him in the waiting room. Another major inspiration to me is thinking about the strength both my mom and my grandad tackled cancer with. I remember a couple of jokes they used about their illness, my grandad referring to himself as looking like doctor evil with his hair loss, my mom singing toxic when recovering from a dose of chemotherapy. Sometimes illness can make you feel so alone, especially after you have has significant others just walk out of your life. It has been important to me recently to remember those people who have battled in the past and those who are battling alongside me. Watching programmes associated with stand up to cancer has also helped. I often think my situation is quite unique having already lost my mom, but there was a story on Tv last night showing exactly the same tragedy. First the mother dying of breast cancer, then the son of a brain tumour. Cancer effects so many of us in so many different ways it's important to be open and take away the sense of taboo. It's in all these different ways and different inspirations that I feel less alone. On more positive notes... I've had a great time recently, two weeks in Devon, meeting up with plenty of absolutely amazing friends, some I haven't seen in years! The best thing I have done recently however, is a VIP experience at west midlands safari park, organised by the willow charity. (To all Cancer patients/parents... Definitely look up this charity, you can apply as long as you are under 40 and on active treatments. You can request any UK based special day and they are truly amazing). So today I have hand fed rhinos and had lemurs sat on my head. An amazing experience! I'm doing my best to make the most of the time I have and what a better way to do it than feeding giraffes bananas. Screw all these hospital appointments... I'm just going to go and live at the safari park!