A beginner's guide to becoming a zombie....

Hey everyone, hope you all had a fantastic Christmas! mine was good, but uneventful,was nice just being in the same country as my family and friends.One reason the festive period was so quiet is down to the exhaustion that now dominates my waking hours. I have experienced drowsiness from medication before, but chemo cranks it up to a whole new level! From the moment I wake up I feel shattered, I frequently doze off in the afternoon, and reglarly pass out in front of the TV in the evenings. I often wake up in bed with my lamp and TV still on as I fell asleep before turning them off!On top of my mobility problems, the tiredness makes walking a dangerous business, I can easilly miss my step, and have fallen over twice in the last fortnight (thankfully indoors).

I did hoever get out on Wednesday(28th) for a pre-booked trip to the Maddermarket theatre in Norwich to watch "AChristmas Carol" with my mother, my brother drove us both there so walking was kept to a minimum, and I managed to stay awake during the whole performance- bonus!!

My new years Eve plans are also going to be quiet, I will stay home with my parents ( rock 'n'roll!!!) and probably watch the big ben chimes with a drink or two- this is if I manage the almighty task of ataying awake til midnight!
I hope you all have a great time tonight, Happy New Year and all the best for 2012!

Why I will be having a HAPPY Christmas

being diagnosed with cancer does funny things to people, not to me, but to other people. I get asked " how are you? but if I answer "good thanks" , I seem to get an incredulous look as if I'm lying. actually that question often changes to "how are you apart from the obvious..? " as if talking about my illness will somehow destroy me- trust me, I'm egocentric enough to talk about myself for hours!!!

At this time of year, I get a llot of "I hope you can try to enjoy Christmas..." or "Have a happy Christmas(if you can..)" The fact is I've always liked Christmas and don't see why this year should be any different. Last year I spent Christmas in Taiwan; a country which does not generally celebrate Christmas, during my last few weeks out there, I was really looking forward to a Christmas with my family and friends, so I'm really glad to be here. I'm not remotely religous, but this time of year alwaya seems associated with hope and love and (~not wishing to get too sentimental!) , these are both pretty important to me right now. plus it's a busy time for me, iyt's my parents' 43rd wedding anniversary tomorrow and , thankfully, I feel well enough togo out for lunch with them tomorrow to celebrate. Then Christmas day itself is also my brother's birthday, so am looking forward to a drink or two to celebrate! Christmas is the one time we can put our worries on the back-burner and just enjoy ourselves which I fully intend to do!

Happy Christmas everyone

The not-so-perfect start to the day...

had my hospital appointment on Friday, where I picked up my bumper bag of chemo drugs.

Turns out it's not as simple as just taking the darnthinngs; cchemo takes military procision. For starters they have to be taken on an empty stomach.At the same time every day. For most people this means first thing in the morning, as most people rarely have all their meals at the same time every day. So starting yesterday (Saturday), I wake up at 7am (with help from Mr Alarm clock) and take two anti=sickness tablets, then I have to wait 30 minutes before taking three chemo tablets, then wait an hour before I'm able to eat. Given I'm not working (and I'm knackered all the time!), I generally have a sleep during this hour! yesterday was the first dose and absolutely clobbered me! I was fine until I started my breakfast, which I couldn't even get down.Learning from my mistakes, I decided that from now on milky cereal is not a good idea! I felt sick for a couple of hours, but by lunchtime, I was fine, all-b-it tired. Today has been a lot better. Lightly buttered toast proved much better, and I've been okay, so I'm keeping my fingers crossed, that it stays this way, and I'm one of those lucky few that doesn't suffer too badly, or if I do it's only in the mornings.


In other news, sadly the mobility's becoming more of an issue: I'm having flashbacks to ten years ago, when I could barely walk! My left leg (like my arm) is now very weak, so walking is a real effort.I've started using a stick outside again, as I don't feel very safe, which is a real nuisance.

otherwise I'm honestly doing okay, just get a bit grumpy now and again! Glad to be home for Christmas too, especially as being inTaiwan meant I missed out last year!

"Nice" chemo

I had my appointment with my oncologist, Dr R today, so now am a little clearer on everything. My main tumour actually looks smaller than last time. The problem is that there are two small groups of cancer cells away from the tumour, so if they operated, it would be hard to remove all three bits without causing damage. Hopefully chemo can blast the whole lot! I am going to be put on what Dr R described as a "nicer"chemo. Rather than intra-veinous via lines and needles, mine is a tablet form called temozolomide. I will take it for five days once a month. It has milder side effects than other forms, I will probably be tired, but severe sickness is rare, and it's very unlikely that I will lose my hair- result! Feeling quite positive at the moment, just waiting for the green light to get started!

Don't Panic!!!

Feel like I had to use the title, as what I am about to say has already caused a somewhat mixed reaction from the people I've told. Basically , there has been a change of plan.

I was phoned yesterday evening by the neuro team at Addenbrookes. They'd looked at the contrast scan (I had a week ago) and decided surgery was not in my best interests.
To clarify, that doesn't mean they can't operate, rather that they think I can be better served by other treatment, in my case Chemo. I already knew I'd be having chemo, this means I don't need yet another risky operation, which I'm choosing to see as a positive! Plus I can have all my treatment at Norwich under the supervision of my lovely oncologist who I've had the last three years- no horrible long trips to Cambridge!

In other news, think the steroid might have finally started to kick in, as for the first day in the last two weeks , I haven't felt dizzy- results all round!

Will as ever keep updating, please keep donating to BT Buddies via my just giving page

When meds go bad.... & giving consent

The dark side of drugs...
Have just had a hideous weekend of illness which we attributed to side effects from one of the three medicine I hasve been instructed to take prior to my surgery on the 12th. I woke up on Saturdaay with the worst headache I have ever experienced, and then proceded to be sick pretty much every hour until bedtime. The dsy was a right-off, mostly spent in bed watching TV and falling asleep! As I was not eating anything, I stopped all meds for the day, and on looking over the side effects (you know that bit of paper in the pill box that nobody ever reads?!) worked out the culprit; ironically the "stomackh settler" you take along with the steroid to prevent stomach ulcers or gastric problems. I felt marginally better on Sunday- at least I was able to eat a little food and take my other meds, although I still felt headachey and lacking in energy
Today I am much better, although getting increasingly frustrated by the dead left arm malarky- takes an age to put your hair up with only one hand! Plus feels more than a little pathetic that at the age of 33, I have to ask my mother to help cut up my dinner!


Consent...

It occurs to me that those of you who are lucky enough to have never needed surgery may not kno how weird the whole consent process is. I have now had to do this several times. During the aftermath of my accident, the resposibility fell to my parents, as I was not capeable of talking let alone understasnding and signing my name, but about a month into my hospital stay I was more concious and approached for consent regarding the plastic surgeryy to my leg. Then three months after I left hospital, I agreed to an operation on the achilles tendons in my right foot. However consenting to brain surgery is a different matter. For starters the list of possible risks is vast and these are explained in detail by the surgeon to make sure you are fully informed. To be honest you have to take an enormous leap of faith and hope in your case you'll be okay. I think it helps to weigh up the alternatives. For me not having surgery has never been an option.

The time is getting closer to the big day now, will be glad in a weeks time when the scary part is over!

becoming unbalanced...

Disability is already a huge part of my day-to-day existence, infact it has been a grim reality for the last 10 years. When I was hit by a car back in 2001, I broke both my arms, my left thigh (femur)and shattered my pelvis in seven places. Following extensive surgery, I had metal put in both arms, my left leg, and pelvis. Those of you who have known me a while already know this, others who have met me more recently, probably know I had an accident, but don't know the full extent of the injuries.You see, just by watching me walk, it's obvious that something is... well... not quite right. As well as all the fractures, I had a lot of permanent muscle and nerve damage leading to an obvious limp and a deformed left foot which is turned inward. I wobble on uneven ground, and need help going up and down stairs where there is no hand rail. I have been living with this for so long, I'm used to it. However, with this added left-sided weakness (caused by the tumour), I am feeling more disabled than ever. I am sure that not being able to use your left hand would be disconcerting for the most able-bodied person, but in my case, it takes away one of the ways in which I balance myself, so I feel even more unsteady on my feet. My cognitive functions are also impaired at present, I spend most days feeling a bit foggy brained and increasingly stupid!I also keep forgetting my left hand is useless, until I go to pick something up and it just slips through my fingers.
I guess on a positive note, having already had a disability for so long, I'm already used to adjusting activities and work out how to do things another way, but it is so ANNOYING. THe scariest thing (and something I'm trying not to think about), is that they can't guaratee things will get better after surgery, so I could get stuck with only one fully-functioning hand, but as I said to my surgeon; weakness isn't life threatening, so I have to have surgery and hope for the best.

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.


PLease keep donating!

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