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!

Beneath the cape

I hit rock bottom today. At least I think I did (finally) I can't think of any other way to describe being sat in your gingerbread man PJs with your cat for company, watching back to back Bridget Jones and crying for four hours (give or take). I love being able to put on a brave face and be seen as an inspiration, but this blog is to spread awareness and for that I have to be as truthful as possible. The sad truth is that I actually spend a fair amount of time being incredibly depressed. Who wouldn't be! Since my diagnosis I have slowly had my lovely life taken away from me. I've lost my health, my education, my job, my home, my independence then my wedding and my fiance and with that my best friend. My life is the complete opposite to this time last year. I couldn't have predicted that in a years time I'd be sat blogging about a brain tumour, MY brain tumour. As common as the phrase is... You just don't think it will happen to you. So I have had a down day, I even ended up calling a neighbor just for some company and to stop me crying. It's been hard learning that sometimes you have to ask for help.  I have so many different people looking out for me from all different perspectives, doctors, nurses, psychologists, family and friends. Yet sometimes it can still feel lonely. One of the worst things about my illness is that I can't find anyone else my age who has the same diagnosis, we are a rare species! I'm meeting my psychologist tomorrow and a couple of friends before heading to Devon on Saturday. Hopefully I will start to feel a bit better again, I guess you have to hit something to be able to bounce back.

A single sentence can cause a single smile to brighten up your day

So hello, in this post I'm sure I am speaking to a larger audience as I am now heavily envolved with the wonderful charity of Abbie's army. The charity is formed in memory of a lovely little girl who lost her battle to DIPG at the age of six. It is ran and managed by her mother Amanda who I have been speaking to a fair amount over the past couple of months, she is an amazing lady. Have a look at her charity page if you get chance. It is one of the only charities in the uk to fund research into the specific type of cancer. As many of you may know, age six is one of the more common ages for DIPG to affect. For me to encounter the horrible disease at 20 is incredibly unusual, but then again I have never been one for normalities! I am going to start writting on a more regular basis with the same intentions of raising awareness. However I am now also writting to provide a new viewpoint for DIPG parents. As I am that much older I am better able to express my feelings and emotions through a greater understanding. I hope this can provide a certain level of comfort to all of you proud parents now reading my blog. As for the rest of you, I hope my ramblings continue to inform and entertain. I've had one of those days today. I met a cancer psychologist for the first time and had a pretty big cry. You know you have it pretty bad when you spot a tear in your psychologists eye! As helpful as it was to just talk, I'm feeling a bit emotional now. It was also a bit awkward at times as she would just look at me until I gave in to the silence and continued to babble on about my feelings. I guess that's what it's all about isn't it? I left the hospital and a nice lady pointed out I still had the tag on my jumper... Nice one! At lunch another nice lady pointed out that I had the tag on my shirt... Go me! I don't quite know how I manage these things. I've had a lot of old friends come back into my life recently which I have absolutely loved. It always amazes me how some people you can just click with and have a conversation as if you talk all the time, bearing in mind some of these people I haven't really seen in years! It's been hard watching all my friends return to uni without me, but sometimes it only takes a few kind words to turn my day around again. I'm lucky to have such lovely people around me. the smallest things can make such a difference. To all the DIPG parents, I'll put my email at the end of this post, please contact me if you have any questions or just want to get in touch. Speak to you all soon!

email: howellfr@gmail.com