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

The ability to smile

my life has recently, once again, been turned upside down. And no that doesn't mean it's back to being the right way up (it's an expression!) it's now just even more confusing and depressing. I'm now officially fat and miserable... I say this of course because I do have a sense of humour, don't worry I've just accepted it! Those of you close to me will know why this is but for this blog it is irrelevant. The purpose of this blog, as it always has been, is to spread awareness of cancer and its effects as experienced by myself courtesy of my dear little friend Brian. I'm feeling already that this particular post is quite sarcastic, apologies! It seems to be my new coping method. A new little motto of mine is that as long as you have the ability to laugh.. Everything is absolutely fine. You need to look for the little things in life and learn to appreciate them more. I've recently also got a lot more adventurous, I'm becoming more and more aware of the fact that I need to live, and do the things I have always wanted to do, but do them NOW! I've just got back from a spontaneous trip to Spain with one of my best friends. We booked the holiday and four days later I was sat on a plane. It was. So nice to just get up and go. I also managed to re live one of my favourite childhood memories... A trip to zoo marine in Portugal. I have found recently that re living memories from my childhood brings me great pleasure, perhaps this is because it takes my mind off my future. This is something I have found hard to come to terms with recently. I have now officially dropped out of uni and am back living with my parents, everything has become very real. Especially now I have finished treatment. I have become overwhelmed by the thought that there is now nothing anyone can do. I just have to hope that Brian stays slim for as long as he can! I have plenty to look forward to in the next few months including a trip to Iceland (very excited) any tips would be greatly appreciated for my travels! In the mean time I'm focusing on the little things and trying to enjoy every moment as much as possible. It's so important just to be able to laugh, whether that's at a (slightly drunk) man falling off a chair through a marquee... Or just being sat with an amazing friend watching a (very strange) film. Sausage party is great for a laugh although as I said... Strange. But it doesn't matter, just laugh... As much as possible. Laughter is stronger than any medicine, it's what I need most and I'm so lucky to have amazing people in my life to keep me going. Keep helping me laugh, comment or message me with a memory we have shared together!

The Results....

Everyone gets nervous about receiving results, no matter what they are for. I'm sure I'll be watching my brother have a mental breakdown waiting for his GCSE results over the next couple of weeks! I had my MRI scan last week, that being around 5weeks since my treatment finished. This is to allow any swelling and inflammation to settle down. For those of you lucky enough never to have had an MRI, it's a very strange experience. You lie down and get slid into a tunnel, it's a bit of a squeeze and for me I have to have my head in a sort of grasp to keep me still. They give you ear plugs but all you can hear is beeps and buzzes blasting away. This lasts for over 30minutes.... I did get a nice break half way through for an injection! But that's all okay because I have the results now! I've been stressing about them so much I actually made myself I'll and had to go into hospital for a checkup where they told me I'm all fine it's just stress! Then I slept for practically two days! Your probably fed up of reading now and actually want to know what the doctor said! So we walked into the room and my doctor had a big smile on his face, what a relief! (I was honestly expecting bad news considering my recent luck). He said I have responded really well to the treatment. He then showed us the scans of my poor brain and then explained that the tumour (Mr Brian) actually appears to have shrunk!! This was amazing to hear as we were specifically told that they were expecting to retain him at best. It's so nice to know that all those hours of 'brain blasting' have paid off! It's even worth all the pain from the steroids but even those are coming down again.. Hurrah! And I have been given the all clear to fly! This doesn't mean I'm miraculously cured, and they can't repeat the treatment because of risk of brain damage, but it's a start to keeping me healthy for longer. The next step is to have another scan in October and from there they can only really monitor Brian. But new research is emerging and breakthroughs are being made every day, so fingers crossed and you never know! So there you go... Some good news at last. Please keep getting in touch and asking questions, I love hearing off you all :)

So I haven't posted in a while now, I have been focus in on recovering from the radiotherapy and doing my best with all the wedding plans. It still feels odd not going to hospital every day. The last treatment was quite odd. I was lying on the bed when the nurse leaned over and asked if I wanted to keep my radio therapy mask... I thought why not! There is now a plastic cast of my head living in my room. We are thinking of alternate uses for it. Best suggestion so far is to use me as a fruit bowl.... To be cherished forever I hope. I feel a lot better now, less tired. I still feel a bit battered as the steroids have had bad effects on my joints and my skin has gone super sensitive. Because of the sudden weight gain I have developed really bad stretch marks too. My hair has stopped falling out though, just two little bald patches above my neck. That's it about the radiotherapy really. If anyone is interested in learning anything about it please ask. I have just got back from a family holiday to Cornwall which was lovely any relaxing. I even went in the sea without a wetsuit! Only negative was burning so easy because of my sensitive skin. The best day by far was a wildlife trip brought by my parents for my birthday. We saw wild porpoise, seals and a large pod of common dolphin, it was incredible. One thing to tick off the bucket list!
Talking of bucket lists... Please comment some suggestions... I'm struggling for creative ideas! So what's next... I have an MRI at ridiculous o'clock in the morning on Wednesday. I then get the results in a review from my doctor the following Tuesday. I'm ridiculously nervous as that is when I'll find out how long they can keep me healthy for with the treatments available... Which is limited unless I can find a new trial of some kind. As always... Fingers crossed!

You will hear from me with an update soon! Please keep getting in touch and asking questions it's been lovely hearing from all of you. X

Good news for a change!

I was expecting this post to be full of depressing information about radiotherapy and my treatment progress. However... I'm now engaged and I have never felt more energised in my whole life. As far as treatment is concerned I have had two tiny patches of hair come out but it's completely unnoticeable. Having something to keep you busy is great in a situation like mine and now I have soooo much to do. I'm so excited and motivated that everything else seems to have slipped into the background. So that's my update... At the time I'm meant to feel pretty awful.... I've never felt more amazing. How lucky am I? Thank you for all your messages from the both of us. It's such a nice change to be spreading good news!

Also... Thank you for all the donations to just giving for brain tumour research. We have now smashed £1000!! All of the money is going to my specific type of tumours research. They are incredible at what they do.