95% of statistics about cancer aren't worth reading...

When I was first diagnosed with a brain tumour five years ago, I (for a short while) became obsessed with statistics. This happens easily , as the minute you type "brain tumour" into google, you are bombarded with page after page of facts and figures. These range fronm useful sights- BT buddies and Cancer research- I salute you!, to the less than helpful work of scare-mongerers, which offer no support at all! It was around this internet searching that I came across the most honest quotattion "When it comes to cancer, you are a statistic of one"(hence the title of this blog!)Over the last five years (and probably more now thanever) this quote has held incresing relevance for me. The more I have learned about my condition, the more I've realised that no two cancerss are exactly the same. For starters the amount of different cancers is huge. There are about 120 different types of brain tumour alone - that's not even considering the various cancers of other points of the body. Even when two people have the same type, they can react differently; one person can feel severely ill, another (like me- luckily) has all the symptoms, but no nausia or pain to speak of. THe danger of relying on statistics, is that it can be up setting. ultimally, for someone like me, who has had a high grade glioma, the statistics aren't good; I have a higher risk of short life expectancy, and (clearly) a higher risk of recurrance. Maybe in part, because I like living in a self-denial bubble, I avoid reading statistics now, as unless it happens to me, I don't need to know. Besides it's always worth remembering, that statistics work on a system of averages; there href=are always people outside the margins, we are forever reading in the press about people who beat the odds, or baffle scientists by doing better than expected, it tends to be these stories which I take more notice in.


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planning treatment

This is just an update really. I met with the Neurological team at Addenbrooks on Thursday after a long drive undertaken by my brother; Cambridge is about 100 miles from my home in Norfolk, on the plus side, it is one of the best hospitals in the country for neuro and is able to offer cutting-edge treatment for brain tumours. I finally saw my scan picture, to be honest couldn't really judge whether it was bigger or smaller than last time, but then five years is a long time and my memory's not that good!
I am going to the Norwich & NOrfolk hospital on Monday for a MRI scan with contrast ( they failed to find a vein for the injection last time!), this should give the sergions a clearer image to work on. Then I will be booked into Addenbrooks for a navigation scan, followed by surgery the next day.

It is difficult to completely remove brain tumours, as their edges are undefined, but now *(unlike 5 years ago) they will give me a drink called 5ALA a few hours before surgery.tThis causes cancer cells to glow bright pink under blue light, giving the surgion a better chance of removing more of the tumour. They will also analyse my tumour there and then, if it proves to be a high grade glioma (like last time), they will insert small chemo wafers in the hole left by it@s removal. this allows chemotherapy to wor straight away directly at the tumour site, it also means they can use a smaller dose than if it were injected into my veins. I won't know until after surgery whether chemo has been successfully implanted. daunting as it all is, I'm now keen to get this all over with as soon as possible so I can relax and recover.
Thankfully I am also now taking steroids aiming to reduce the odema (swelling)around the tumour whic causes aot of my symptoms such as severe left sided weakness (can't use my hand much at all!) dizziness, drwsiness and saliva dribbling (just as beautiful as it sounds)generally I don't feel too bad though, am glad things are slowly getting sorted!

The (too much) power of the media

In my last update I touched on the idea that the media has created a certain idea of what dealing with cancer looks like. This is most prevalent in our TV soaps and dramas. After a year in Taiwan away from British TV shows, it hasn't taken long to get back into the familiar world of Eastenders and Coronation Street, both of which currently have very different cancer storylines. In Corrie we have Chris, who, like me, was diagnosed with a brain tumour. As an ex wife-beater, he is not really a character we can warm to, even the way he dealt with his illness was underhanded; first, playing on the sympathy vote ("it was the tumour that made me violent...")and his ex-wife back, then lying; when told things had improved "It's getting worse and I'm dying"), so she would stay with him. I watched this with interest (understandably), but found the response of the medical team even more unlikely. When the treatment ( I think he had radiothedrapy, but got confused, as he lost all of his hair (like a chemo patient- when I had radiotherapy, I only lost a small sexction on the side of the tumour...), he was told "You've got your life back". No Oncology nurse or doctor would ever say this. I am proof in point that there is rarely a complete cure of brain cancer, you have regular check ups indefinitely as there is such a big chance it'll come back. This is, of course, aside from the fact that most of us donn't want a sympathy vote or to be treated differently, just because we are ill.
The Eastenders storyline is different in that it concerns Tanya's fight against cervical cancer. Admittedly I know little about this type of cancer, although like many became more aware following the death of Jade Goody, which created a lot of (neesded) awareness for the disease. Tanya has three children (including one toddler), yet for unfathomable reasons is refusing chemo and radiotherapy, dispite being told she risks worsening her prognosis.
Ido think this is anexmple of a show choosing unrealistic behaviour purely for entertainment, rather than to inform. There are cases of people turning down treatment, but this is usually in cases, where the cancer is terminal, and treatment is only prolonging life (by a few months), rather than curing. In these cases I am full of respect

Don't call me brave!!!

I hope I won't offend anyone too much by getting this off my chest. If there is one single word in the English language which has the ability to irritate me more than any other, it is the word "brave", particularly when used in the sentences "you're so brave" or "I think you are really brave" etc I generally let it go, as I know people's intentions are good, and that thoughts like these come from a good place... However, I never know how to react, because I honestly don't think brvery has much to do with the whole cancer erxperience. I know from talking to others who have experience similar, that I am not alone in feeling like this. There is nothing brave or inspiring about getting ill. The simple fact is that it happens. You have to get on with it because you have no option. People seem to interpret this acceptance as omrhting else. I am not brave by nature. I get spooked by horror films, don't like walking outside at night time, and am scared everytime I read about another natural disaster in the paper, truth is, I'm actually a bit of a wuss!
hen it comes to my illness, of course, I get scared, I'm scared of the unknown; as yet I have no idea of the size of the tumour, or even if it's the same type as last time. \i'm scared about the possible effects of another operation, and scared about whether or not surgery is even an option. I'm also anxious about the prospect of chemo- I've never had it before; last time I had surgery followed by radiotherapy, but they don't generally radiate brains twice. So on reflection don't feel brave at all.
I think, that people see my ability to talk about it and deal with it as some brave action, whereas I see it more as preparation and dealing with what you have to. The early days are all a bit of a waiting game, whilst you wait for appointments and decisions to com together, meanwhile you have no choice but to carry on with life. It's all about self-preservation, I refuse to bcome soley "cancer" and that's the biggest fear, that people stop seing me as "Lucy" and can only see the popular media idea of "The brave cancer survivor" I'm not stupid, having a brin tumour is bloody scary (obviously) but nothing you do or say will make it go away, that's down to doctors, modern technology and a bit of luck! If you've ever cut yourself, think about it- you exclaim in pain, maybe even cry for a couple of seconds, but then clean it up, put a plaster on it and then get on with your day. Choosing to carry on is just what you have to do, thids is not that different it's just the word "cancer" is so terrifying to the general public, but when you've already been through it once, your perspective is a little different.
So next time you speak to me, just call me Lucy, please don't call me brave!

plese keep donating to the wonderful people at BT buddies via my Just giving page: justgiving.com/lucycunnington0

lets get the bad news over with...

Okay, so people who know me well, also know I'm somehtin of a blog addict. in recent years, this has gone hand in hand with my decision to teach English as a foreign language abroad,it's easy to fingd things to write about when you're busy exploring new things in Russia and Taiwan.

THis blog is completely different, but I hope will be a good catharsis for me as well as a place where my friends can be updated about me, hopefully reducing any of their worries. Some of you reading this will be aware, that as of yesterday, I was told I have a brain tumour for the second time. THe first time was back in 2006, when I was halfway through my PGCE course. I came to a conclusion that higher education and I do not go well together. In 2001, I was in the final year of my English degree when I was hit by a car in a hit and run asccidet which nearly cost me my life, and left me permently disabled. I had to take a year out of my degree cours, was in hospital for 4 months, and spent about 10 months learning how to walk again and wondering why the UK wasn't more wheelchair friendly! So then I was faced with tpostponing my PGCE too!

Statistically if you've had a brain tumour (BT) you are more likely to have a reocurrance eventually, than never at all, so I always knew it was likely. Then literally two days after I got back from Taiwan, I had my first seizure in five years, recognising the symptoms< I phoned the hospital and following scans had my suspisions confirmed.
I have decided to wrtite this as I bfound last time a lot of friends couldmn't handle it and didn't know what to say, so hopefully this will bridge the gap. I don't fell ill at the moment and my lovely doctor has given me some snti-seizure drugs to make life more comfortable. I will Be updating this regularly. I am also asking people to make donations to BT buddies- a great charity that supports, sufferers, survivors and their friends and families. please go to my just giving page: Lucy Cunnington is fundraising for BT Buddies