Cancer Incognito

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It’s been a while since my last post and for the few of you who have been asking when my next one would be, here it is. It is also probably going to be my last. (Don’t worry, it’s not because I’m dying! Well, not just quite yet!)

The reason I’m probably not going to write any more is that as of this week, it is a year since my second and last brain surgery / craniotomy; my ‘craniotomyversary’, if you will! Throughout this last horrific year, one thing has become clear to me; everyone has their own shit/cross to bear to deal with. So, I can’t keep prete
nding everything is normal if I keep interrupting mine and everyone else’s lives to get attention from this Blog. I think I will just pop up once a year and write “I’m still here, don’t worry!” and be done with it.

I have been incredibly lucky in many respects and am very grateful, particularly for my husband, my family and friends who have kept me alive this last year, and as ‘A’ said to me the other day, when I was having a mini meltdown about wedding outfits, “You don’t even look sick any more!” Hence the title of this post. I obviously still have terminal cancer but people wouldn’t know unless I told them or they caught me having an ‘off’ moment, or a ‘twinge’ as I call them. A twinge is a way of Tim the Tumour twat reminding me that he is still there and not to get too carried away with myself or he’ll ‘lay the smack-down on my ass’.

It’s true, people no longer look at me and give me the really kind, pity smile, or the head-bob for the FRIENDS fans. I had a lot of Oprah moments like these too:

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So being Cancer Incognito is amazing! It helps that my hair has grown back and I’ve had it cut so you can’t see my bald spot, especially when I use a small Ozone destroyer sized can of hairspray. People don’t offer me their seat on the train (It only happened once, but still!) and it’s only really ‘A’ who holds the door open for me now.

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Me after radiotherapy and sending a picture to my sister helping me to choose an outfit to go back to work in (I’d forgotten how bald I actually was until I saw this photo again!)

8 months later:

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Me now (Cancer incognito) with very handsome hubby

I have been told that Tim the Tumour twat looks pretty settled so we just have to keep going and doing what we have been doing. They have extended my chemo for 6 months, which is fine as I don’t suffer too badly whilst on treatment. My next chemo week starts tomorrow and I’m going to do the Birmingham Colour Run on Saturday; it’s only 5K but even though I joined the gym a couple of months ago, I have been once. For about 35 minutes, so I’m a bit nervous!

To mark the anniversary, which one of my friends who I met/made in hospital called Julia, said to me a few months ago “I really didn’t expect you to be here now”, I got a tattoo. (Sorry again, Dad.)

Leanne and I had spoken about it before Christmas and after she unfortunately passed away, I was determined to do it. Me and Leanne would have celebrated our joint craniotomyversaries so well! Cocktails and dancing would have been a must. I did raise a glass to her and know she’ll be laughing at my attempt to do the Colour Run from somewhere. I can’t even remember what tattoos we discussed having but I went with something I liked as a piece of art as well as something symbolic to me. See below:

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Although, we were lucky enough to go on holiday two weeks ago and I was conscious of it. We went to Santorini for a week and it was so beautiful. On the last day, I was sat on the sun bed in my itsy bitsy, teeny weeny (not!) bikini, with my trusty ‘Bruno Mars’ hat on (you have to wear a hat like a vampire would have to, to cover the bald parts from the radiation.). A lovely couple lay down next to me and the man after looking at my back, asked me if I ‘was a Neurosurgeon’?

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Luckily being a teacher has prepared me for answering unexpected questions:

“Miss, are you pregnant or just a bit fatter?”, “Miss, I saw on youtube that Hitler is still alive in Argentina. Is it true?” etc. etc. or more difficult to give an answer to an innocent 12 year old “Miss, do you think that racism will always exist?” So I didn’t laugh in his face, and he took the real reason I had it very well.

The kids at school have kept me alive as well. By not treating me any differently at all, even when I was as bald as an egg and keeping me on my toes. Tim the Tumour twat didn’t know what the hell had hit him when I went back to work. It was definitely a turning point with regards to who had the most power, me or Tim the twat. I’m not one for giving serious advice, but going back to work so quickly was fantastic for me; I know not everyone can be so fortunate but it helps get your life back to normal.

I am currently enjoying the summer break with ‘A’ and as my Grandad, who sadly passed away last year, would always tell me “It’s your life, enjoy everyday.”…so I am and we will. And, if I miss the attention (unlikely) and questions I can always wear this:

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And as always in my blogs, which if you follow the arrows below you can read all my previous posts- In memory of Leanne, donation page :

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/displaySomeoneSpecialPage.action?pageUrl=Thegreatbrainrobbery

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Other Brain Tumour charities and info:

http://www.braintumoursupport.co.uk/

http://www.headsmart.org.uk/

Finally, over the last year lots of people have given me advice but nothing rang as true and went straight to my heart as much as the words from this video by Alan Watts.

Around the world (and the bend!) in 20 Travel Insurance Companies

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Disclaimer: All opinions are my own and I am in no way affiliated with any of the mentioned products.

The week beginning the 16th March was my most recent ‘Chemo week’ which meant that I was more tired and irritable than usual! However, one excellent piece of news was that my consultant said I was fit to fly. Cue numerous dodgy renditions of Madonna’s “Holiday” on the way back to work. With the Easter Holidays coming up, I thought this would be the perfect chance for us to get away, relax and recover a little from the last 9 months of living in an ongoing train wreck.
Nothing was going to stop my glee!…until I started the process of trying to find travel insurance. This post will summarise my findings and try to be helpful for anyone in a similar position.

Step 1: The holiday
I knew it wasn’t going…

View original post 1,233 more words

Around the world (and the bend!) in 20 Travel Insurance Companies

Disclaimer: All opinions are my own and I am in no way affiliated with any of the mentioned products.

The week beginning the 16th March was my most recent ‘Chemo week’ which meant that I was more tired and irritable than usual! However, one excellent piece of news was that my consultant said I was fit to fly. Cue numerous dodgy renditions of Madonna’s “Holiday” on the way back to work. With the Easter Holidays coming up, I thought this would be the perfect chance for us to get away, relax and recover a little from the last 9 months of living in an ongoing train wreck.
Nothing was going to stop my glee!…until I started the process of trying to find travel insurance. This post will summarise my findings and try to be helpful for anyone in a similar position.

Step 1: The holiday
I knew it wasn’t going to be easy. First, we had to find a holiday as the insurance companies don’t like it so much when you can’t say exactly where and when you are going. So, online we went and spent hours browsing hundreds of holidays. I even had my sister looking for me as well! In the end, the general consensus was that we had to stick to the EU for insurance purposes, I had been told that this would be easier to get. ‘A’ is a sun God and could quite happily spend all day in blistering hot sun, so it had to be hot and in the EU…at end of March, beginning of April. It had to be the Canary Islands; the most southern spot still classed as within the EU. So, booked it and were 1/5 of the way there.

Step 2: Insurance
I left the hospital with lots of reading and skim read them on the way back to work.

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They were useful but quite basic and not specific enough in directing us to the most suitable insurance companies. I turned to the nations favourite money based website and found a forum on there discussing the best insurance companies for people with Cancer.
Also, note: You must have your EHIC card (Replaced the E111 Card) as well as separate Travel Insurance. It is free, you can apply online and mine came within 4 days. You also need a letter from your consultant stating you are fit to fly.
Below is a list of the companies which were recommended as specialist UK based insurers dealing with Cancer patients.

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My list of Insurance companies which I took from an online forum.

I found it better to speak to a human on the phone instead of trying to do it online as I could double check anything and ask whatever came into my mind. However BE PREPARED FOR IT TO TAKE AGES! It is also highly frustrating as where you go within the EU affects the premium price. Unless you are a millionaire, don’t even bother with a cruise.

They all seem to follow the same set of questions which takes about 10-15 minutes. CRUNCH QUESTION comes after the standard ones:

“Have you been diagnosed with a terminal illness/injury?” ….
“Yes…”
“Sorry, we are unable to offer you insurance then”.

This happened to me about 5 or 6 times from some of the companies above. By the 6th one, I was getting a bit teary and to be honest close to having a meltdown at my desk. When I found one who would insure me even with a terminal prognosis I agreed straight away (after having another mini meltdown!) Ironically, the company I have gone with is called “All Clear”…sniggers at the irony.

Step 3: Paying for it.
I knew it was going to be expensive but still, the premium was insane. It was more than the holiday and flights for both of us! However, ‘A’ suggested using part of our joint savings to pay for it. I had a better idea but one which was and still is tinged with sadness. My wonderful late grandfather passed away last winter just after I had come out of hospital for the second time. He was the ultimate patriarchal leader of the family and whilst we knew it was coming, it was obviously gut wrenching for everyone. He was an intelligent and shrewd man who was able to leave all his grandchildren something in his will. Without going into too much personal detail about them, both my grandparents loved travelling and spent a lot of their lives seeing and exploring the world. I swore and ‘A’ agreed, that every penny of what my Grandad had left me would be and should be spent on travel if I was able to. If ever there was going to be a perfect opportunity to use what my Grandad had left me, I knew he would approve.

Me & 'A' with my Paternal grandparents

Me & ‘A’ with my Paternal grandparents

Whilst not as adventurous as they were in destinations, the Canary Islands were at least a start for me.

Step 4: Surviving the flight.
Have you ever smuggled a packet of crisps on board a flight? As the plane soars, the packet expands as the air tries to escape. This was what I was worried would happen to my head. Stupid I know, but I was so nervous that I would have excruciating headaches whilst on board that I took a month’s supply of Paracetamol with me in my hand luggage. I was worried I would have a seizure at 36,000ft in a steel container (the Hulk in ‘The Avengers’?? Anyone?) even though I am still on anti-seizure medication. With the awful news about the Alps plane crash still fresh in my mind, it is safe to say I was bricking it.
The flight was obviously fine and as I tried to think logically about it all, I knew it would be. No problems at all. Highlight of airport was testing my titanium skull screws in the airport security. I had been told that they wouldn’t set the alarms off but I was secretly hoping they would so I could pull out the Cancer Card and make the attendants feel bad. (Interestingly, they did go off in Tenerife though, although ‘A’ is convinced it wasn’t anything to do with my screws).

Step 5: Made it, chill time and reading time.
I am an avid reader. If someone tells me that they ‘don’t like reading’, I judge them and end the possibility of friendship there. To me, reading is like breathing and over the last year I have got back into the habit of always having something to read on my Kindle. A few days before we flew, I noticed a new film poster with my favourite eye candy, (except for ‘A’ obviously!!) Tom Hardy on.

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I ‘accidentally’ clicked on the poster to enlarge it and it took me to a description of the new film he is starring in based on best seller blah, blah, blah. So, with a few more clicks and a quick scan of the plot, historical fiction= I’m in. I had bought all 3 books in the trilogy. Didn’t know what order they were in but they were wonderful and can’t recommend them enough: All by Tom Rob Smith

1) Child 44
2) The Secret Speech
3) Agent 6
I read them all (albeit in the wrong order…how I have them here is the right order I think) as well as a couple of trashy ones which I am too ashamed to admit too on here! Whilst I had to buy a new bikini as my old ones were 3 sizes too small and I did feel like this whilst sunbathing

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I had to wear a hat at all times or something to cover my bald parts from the radiation. I felt like a cross between Bruno Mars and a Saudi Prince! It was completely worth it
The holiday was incredible, we completely relaxed, rested and it felt so good to feel the sun on my jaded bones again. If you are in a similar position, you must try to get away somewhere if you can; not just for yourself, but for the person/people who are in this with you.

Next chemo week on Monday…when are the next holidays? We need to start saving.

Fake it to make it?

As the lovely, very smiley and professional lady skilfully manoeuvred my near naked body around in her bay she casually replied, not half a metre away from my backside “Well, you look really well!” I faked a little laugh and said that she should know!

No, don’t worry! This fortnights post is not a toned down 50 Shades of ‘Cancer’ (Although, now regretting my choice of blog name!). I was having a spray tan and had several awkward moments. The aforementioned being one. I remember someone saying that people only say that when you’ve put weight on!

Awkward moment number 2: “Oh, don’t worry, we never spray anyone’s scalp or hair. Pop this towel around your head and it will be fine.” OK, I faked a smile…cue:

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I mean…seriously. #cancerproblems

Luckily, I am wearing a lot of turbans at the moment, so not a huge problem!

I am not a fake person. In fact, my friends and colleagues often tease me about how blunt I can be, as I seem to be able to say it how I see it too easily! However, if you are reading this and you yourself have cancer or had it, you will know that most of the time it is easier to fake a smile when people are genuinely being kind. I am naturally a smiler and have always been so.

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Awkward moment number 3: Lady in the salon chatting away to me whilst we were both waiting to pay. Stereotypical beauty salon customer, looked like she had fallen out of Hollyoaks or Heat magazine. Really nice girl and was very kind. “It’s so awful, my Grandma died last year from lung cancer. But my other Grandma had skin cancer and she’s OK now! So you never know, you’ll fight it and it’ll go!” I faked a kind smile and said “Hopefully!” No one says these types of things to be cruel so whilst I could have been nasty and said that actually it is terminal, I didn’t…

Until that is she said “My Grandma says “Everything happens for a reason!””.

Nope. Not acceptable. I can’t fake my reaction to this. So I politely told her that I couldn’t agree. That whilst her Grandma has faith in pre-destined plans, a few days ago I attended my 25 year old friends’ funeral so was finding it a bit difficult to see any reason. She gave me a really kind/pity smile and left. I swiftly paid and ran out of there.

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My fake tan had led to all sorts of faked behaviours. Like my life at the moment really. I and ‘A’ put our armour on every day and fake smiles to people when they say how well I’m doing and how ‘brave’ I am. When people ask “How are you?!” We fake it and usually say “OK, doing OK.” No one wants to hear the truth, the truth is that we aren’t OK, our life, like everyone elses affected by Cancer is upside down and a constant emotional roller-coaster.

The previous week was certainly a roller-coaster. We had hot footed it out of work Friday afternoon and headed south to Cornwall to spend 2 wonderful days with our Aunty and Uncle. Whilst there was nothing fake about how much we enjoyed ourselves, it did feel like a little glorious holiday. On the beach, it was beautiful and we snuck in a trip to the Eden Project too.

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Enormous fake Bee

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Glorious Perranporth beach

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The Biomes at The Eden Project. Last year, we did the superman zipwire across them. If you get the chance do it!

We made the most of the fake ice rink and ice-skated our asses off… ‘A’ was frustratingly good!

We trekked back to the Midlands on the Sunday evening as I had my monthly check up and chemo dose appointment early the next morning. However, after testing me and, my blood, they were not able to give me that weeks chemo as my blood platelet levels were too low.

Not to worry! Even though I was feeling OK, the previous bout of chemo had still left some of its effects behind. Totally normal they said and after booking another appointment for the following week, off we went. (I went back a few days ago and my platelet levels were back up so it’s all chemo a go go this week!)

I am currently on Temodal tablets which I normally take before I go to sleep. They are reasonable in size, but get bigger as they increase your dose.

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My nurse suggested this as apparently you can sleep through some of the side affects. However, be prepared as night stomach cramps and insane temperature changes are not things you can sleep through!

As we left Leanne’s funeral a few days later that week, which was heart and soul crushingly sad but so beautiful, it was so strange that life was carrying on as normal. Why wasn’t it on the news?! People were just carrying on as usual like nothing had happened. It wasn’t in the papers or anything like that! Why not?! This glorious beautiful, warm, funny and ridiculously kind person had gone and yet as soon as we stepped out of the church and from the wake, it was as if it was a secret only we knew about!

I started thinking about the stories involving Brain Tumours from last year and how the Media had almost tricked us into thinking they were covering stories on Cancer. They were faking an interest in Brain Tumours!

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Initial or ‘Fake’ Story?

‘Real’ issue driving the story?

Ashya King Child has terminal Brain Cancer. No cure. Idea that the NHS failing to make the right decision for the boy.

And…

Possible child kidnap/death horror

Brittany Maynard Beautiful young woman has terminal Brain Cancer. No cure. Right to die/live debate in USA.
Jayden Wilson Child has terminal Brain Cancer. No cure. Amazing Dad dresses up as Spiderman for his little boy. Video is truly tear jerkingly cute:

http://www.bbc.co.uk/news/uk-england-hampshire-30610299

Goldfish Brain Pet goldfish has Brain Tumour operation “Someone in Australia paid how much to save a Goldfish?!”

My point is that we do not hear about the real, everyday stories of normal people suffering and dying from cancer, particularly Brain Cancer; there are too many people being diagnosed with this disease, in all its forms. Last week, Cancer Research announced that more people survive cancer than die from it now and that child deaths from cancer had fallen. Obviously that is incredible and so pleasing, but that is not the case with Brain Cancer.

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Maybe not in the number of people who suffer; but certainly in the number of deaths from these cancers.

I am so grateful that since my last post, this blog has raised over £1500 for the Brain Tumour Charity in memory of Leanne. Thank you so much for reading it but also for donating if you did. We desperately need a cure. I have taken part in a research trial, which at the moment has meant that they take a lot more blood from me than they normally do each month.

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I would like there to be a cure, for obvious reasons. Selfishly, because my life is perfect and I don’t really want to stop doing the things or being with the people that I love.

Below is the breakdown from Cancer Research UK on where they spent some of their funding last year. As you can see, the funding towards Brain and Neuro is not as high as it should be.

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Brain cancer is the biggest Cancer killer of people (including children!) under 40. By not investing the money in the research, are we indirectly saying, only the older people who get cancer are likely to survive?!

If you are enjoying my Blog and if you haven’t done so already, please donate any amount to Leanne’s fund at the following link:

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/displaySomeoneSpecialPage.action?pageUrl=Thegreatbrainrobbery

Thank you!

Keep smiling! x

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Lessons from Leanne: 2nd post

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It is with huge sadness that I have to report that my friend who was mentioned in my previous post has unfortunately passed away. I will never say that she “lost her battle” as ‘battle’ or ‘war’ metaphors for describing Cancer piss me off. The implication that someone who dies from Cancer loses because they didn’t ‘fight’ hard enough is just bullshit.Bullshit

It is also upsetting for family members who will forever have engrained into their retinas the struggle and strength shown by sufferers in their last few days. Leanne didn’t lose a ‘battle’. It was not a battle. It was fucking massacre which she and most people diagnosed with a grade 4 go through. Danny Baker hit the nail on the head when he said “You don’t battle Cancer, you are the battleground.”

Leanne, who I had the great fortune of meeting through awful circumstances was 25 years old, beautiful, kind, goofily funny and totally genuine. Leanne was diagnosed at the same time as I was, but whilst we nicknamed each other our ‘tumour twin’ as our tumours are in the same right frontal lobe position; in truth, her tumour was a grade 4 Glioblastoma whilst mine is a grade 3 AA. In a way, I truly think that in a time of despair we latched on to one another to share our experiences and at times our grief.

Therefore, this blog and all its posts will be forever dedicated to our much too short lived friendship and her memory. My sister and I have set up a fund linked to this blog (see below). All donations will go to the Brain Tumour Charity. Their mission is to find a cure, since as of yet, there is none. This blog and all its post will try to be positive and humorous as both I and Leanne always tried to be separately and when together.

I am not going to describe the Last couple of weeks of Leanne’s life, but share with you what we discovered together whilst going through this. Some may be more useful to you than others, but all are true.

Lessons learnt from Leanne & Emma

Live your life as normally as you possibly can.

Learn to say ‘yes’ and accept all help when it is offered. Most people want to help so it makes them feel better too.

Love those close to you even more.

Lying down and sleeping quickly become your favourite things ever. I know Leanne was so excited about getting a new bed as she had spent so long sleeping and lying in her older one.

Let yourself have a melt-down every now and then when you need to. We would often text each other late at night, confessing to being a trembling wreck on the floor. Mainly the causes of melt-downs are linked to…

Learn to approach the internet with caution. There are some wonderful websites, blogs (eh-hem!?) and other online forums which we used to inform ourselves. However, there is also some crazy shit and scary shit on there. One evening, casually on my tablet browsing the internet led me to have a complete melt-down after only four or five clicks. Just be aware of what you may come across.

Laugh about whatever you can to do with your condition…for example: you are going to have major constipation. The anti-sickness meds stop anything coming up, but also stop most things coming out too! Whilst Leanne and I never shared photographic evidence, we shared congratulatory messages when the deed was finally done.

(Linked with the previous point!) Laxatives! Leanne in her way told me “Laxido, it tastes like shit, but helps you shit!” Pretty sound advice I’d say.

Little steps become huge milestones. After my second operation, I couldn’t walk for a few days and was bed ridden. (Side note; I’m all for hygiene, but why the hell I had to piss in a cardboard bed pan…I will never know.) when I tried to stand up with the physios, I fainted… as nearly did my Mum! The next day, they came back and we walked down the ward and back. I couldn’t stop smiling and telling everyone I had walked 50 yards!

Leave the insignificant bullshit behind you. Things which previously would wind you up- let them go. You haven’t got enough energy to care about them anymore.

Listening to music really helped me through my RT. I asked my friends to suggest songs I could listen to whilst having it. It was one of the best things I did…apart from saying yes to A and messaging a total stranger called Leanne who I had heard was in the same hospital as me.

Leanne loved music, especially dance music. So for you, twinnie, rave on wherever you are:

https://www.youtube.com/watch?v=_KhsQ3nn6Kw

This blog now has its own fundraising page in memory of Leanne. Thank you so much for all your positive feedback so far. However, don’t thank me or praise me; just donate to the cause. Also, thank you to Leanne’s family and friends who have allowed me to do this.

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/displaySomeoneSpecialPage.action?pageUrl=Thegreatbrainrobbery

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Other Brain Tumour charities and info:

http://www.braintumoursupport.co.uk/

http://www.headsmart.org.uk/

Introduction and welcome: 1st Post

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As you can see from the images, the number of people who get Brain Cancer is significant. It is the biggest Cancer killer of people under 40 (including children) in the UK. However, unlike other Cancers, there is hardly any money allocated through charities and/or the British government into research for finding the cause or a cure.

Brain tumours – the UK facts (courtesy of The Brain Tumour Charity)

  • Brain tumours are the biggest cancer killer of children and adults under 40.
  • Over 9,100 people are diagnosed with a primary brain tumour each year. As many brain tumours are not recorded, the figure could be much higher in reality. That’s 25 people every single day.
  • Over 500 of these are children and young people. 25% of these will die – one child every three days.
  • Almost 5,000 people lose their lives to a brain tumour every year.
  • Cancers that begin in another part of the body which go on to result in a tumour in the brain (secondary brain tumours) are estimated to outnumber primary brain tumours by a factor of 3 to 1. That’s over 27,000 people.
  • Brain tumours reduce life expectancy by, on average, 20 years – the highest of any cancer.
  • Just 14% of adults survive for five years after diagnosis.
  • Brain tumours are the largest cause of preventable or treatable blindness in children.
  • Childhood brain tumour survivors are 10 times more likely to suffer long term disability than well children. This accounts for 20,000 additional disabled life years for all the children who are diagnosed each year.

I write my first Blog whilst being quite upset and, to be honest, very pissed off. My blog is a fortnightly account of my journey with a Brain Tumour and subsequently Brain Cancer. I should explain that even 2013 BC, (before cancer) I was & am naturally a very positive person who tends to always have a sunny disposition as my default, go to setting. Unfortunately, I am quite upset and pissed off tonight as I have heard one of my ‘Cancer’ friends, or my ‘Tumour Twin’ has taken a turn for the worse and her family may have to move her to a hospice next week. She is only 25. I am pissed off at this shitty disease which does not pick and choose anyone in particular and is likely in the next few weeks or days to take my new beautiful young friend away from me. (Hopefully more on her next post).

This blog is for people who may be going through something similar, including sufferers themselves or family members. I will be writing about my experiences and in between scratching my Bobby Charlton like head, there will probably be some serious swearing. So, if you are one of those who are easily offended by specific words, you might as well say goodbye now. Since, when you have Cancer, or more specifically when Cancer has you, there is a lot of swearing. My first word AC (After Cancer) was “Fuck.” and I did also call one of the doctors who removed my Brain Drains (I looked like Coolio, but instead of 2 dreadlocks I had 2 ‘plastic blood filled bags of fluid from my brain-locks’ for 2 days) a See U.Next Tuesday (disguised only for the benefit of my Nanna and Dad) That by far was the most painful thing I have ever had done…and he did deserve it as he told me “It won’t hurt at all”. Liar.

Stephen Fry, one of my heroes, is quoted on goodreads.com (I’m sure a well researched and reliable source!) as saying:

“THE SORT OF TWEE PERSON WHO THINKS SWEARING IS IN ANY WAY A SIGN OF A LACK OF EDUCATION OR A LACK OF VERBAL INTEREST IS JUST A FUCKING LUNATIC.”

Stephen Fry

So, back to the Apocalypse. If the same number of people who get a Brain Tumour or die from Brain Cancer every year were actually being killed by some pop culture style, brain eating Zombie, there would have been serious UN or military intervention strategies taking place. Plus, my friend who has taken a turn for the worst would completely agree, that when things are bad the sufferers become Zombie like in our movements! So if you survive a BT operation, you end up walking around like a Zombie for a few days (if you’re lucky!) and if you don’t make it, it is as if your Brain and your life has been stolen.

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Yet, apart from the odd news story (more on them in my next post) it isn’t a cancer which is spoken about or discussed until it happens to you.

I am a 28 year old teacher who never got poorly. Until Spring of 2014 that is. I was constantly being sick, vomiting, had terrible headaches and was very tired all the time. GP visits and blood tests revealed nothing and I was told at first it was a virus, then it was migraines. Everyone else kept telling me that I was pregnant.

After a few more weeks, I went to see private GPs and consultants who booked me in for a MRI scan with 72 hours. I was then told on the 11th July that I had a brain tumour. I have subsequently been told I have Brain Cancer, the tumour is a malignant grade 3 and classed as an Anaplastic Astrocytoma. Since then, I have had 3 hospital stays, 2 Brain surgeries, 6 weeks of Radiotherapy/ Tomotherapy and several courses of Temolodomize Chemo tablets.

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After 2nd Brain surgery. I wanted to put an extra ‘R’ at the end of bone….but my Dad wouldn’t let me.

I’ve had 2 parts of my skull removed as they became infected after first operation. I now have a baby like squidgy head. My titanium plate is due in the summer. Third Brain operation already planned. Organised isn’t even the word.

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Me on first day of RadioT treatment just after my session had finished. I wore the gown only once. You don’t need to wear them really. I just wore vest tops after day 1. Although TIP: the machines like it to be cold in there so take a cardigan or something to have over you. If you look closely, you can see the indents from the mask on my face. Makes you have crocodile like skin for an hour afterwards. Great for scaring kids in supermarkets.

It is only really starting to sink in properly now. When we were told to go to A&E on the Friday 11th July, it certainly had not sunk in. Even when they told me on the 12th July that I would have to have major 8 hour brain surgery, it hadn’t sank it. I was almost completely oblivious and was having a laugh in hospital with all the staff and my family.

My family: I got married in Oct 2013 to the most incredible man in the world. I knew he was the best man…hence why I married him, but since this nightmare has revealed itself, I have never felt more lucky to have met him and his family. He is called A (for this blog only!) and it’s pretty fair to say he was screwed over on the ‘Sickness and health’ vow. He has done everything for me. From bathing me, to being at my total beck n call, cooking, washing etc.
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We have a 5 year old beloved dog called Henry who is our ‘baby’.
imageHenry didn’t understand why I wasn’t walking him as much.

Luckily/unluckily (depending on how you look at it!) we don’t have any children.

I have an amazingly strong and wonderful sister called Hannah who is 25 and married to Phil, a brother (Sam) who is 15, another sister (Milly) who is 5. Mum, Dad & Step-mum. Up-to-date? Phew.

I am still on the Chemo tablets for one glorious week every month, nothing seems to  be growing! Apart from the stuff which I don’t want to grow!

So whilst I have the hairiest legs, (sexy huh?!) my nails are brittle and have pretty much all snapped off. Tomorrow, my wonderful sister (Hannah) is picking me up and taking me to have my nails spit shined & polished. Makes me feel a little more feminine.

My hair is, well, shocking. I luckily have quite a pretty face, but even a pretty face looks bizarre with no hair except a Woody the woodpecker style tuft on the top!
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But, whilst I did care when it started to fall out; I do not care at all about my hair now. It’s only hair.
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I tried to be positive and take control by going to the hairdressers to have it shaved off. It was hard, but the lady was so kind and generous to me, I cried even more because of her kindness.

I have decided not to wear a wig, as I thought they would be hot and itchy. Plus, the good ones start from £500.

This was all fine, I am happy with my Amish like headbands which cover my scar and indented skull.  But I am a bridesmaid to my beautiful friend in a few weeks…and now, the ‘Girl with a
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Pearl earring’ painting or Amish look isn’t filling me with confidence. (More on that in the next post.)

Brain Tumour Charity Link