No Regrets

19 Feb

I think many people would be saying ‘If only…’

‘If only I had been able to see into the future I would’ve travelled here…’

‘If only I had known that this was growing inside of me I would have spent less time wishing I were someone else; richer, more successful, prettier.’

‘If only I had known I might not be around ’til I was 80 I would’ve grabbed things with two hands and hit the ground running with as much enthusiasm and vigor as I could muster.’

I can honestly say that there have been times when I’ve thought ‘uhrgh the grass must be greener – if I earnt more I could do more.’ But I’m lucky – these moments have been few and far between, passing as quickly as they appear. The money thing is generally because I want to buy rounds of drinks for friends and can’t!

I have very few regrets and I have my parents to thank for this- they’ve never pushed me to do what they see as the ‘right’ thing (find a career, settle down..) which must’ve been hard for them and scary. To see your only daughter leave and run to Mexico, then fall for a Mexican!

They have been unbelievable supportive, from initially instilling such a strong work ethic that they probably knew that I would eventually come back. But not telling me what I should do with my life as I clearly wouldn’t have done it and needed to find my own way. They don’t understand my job but I hope they are proud.

They now fully expect me to have an on-off career as a few members of my mum’s family have. Even though Dad will have another heart attack if he reads this! Dad it will be in advertising for as long as I can handle the pressure, that I can assure you of!

Dad’s rigorous saving attitude & mum’s more free spirited family & now the brain tumour seem to have combined to make me.

A me who works very hard but makes the most of life.

And I’ll admit and give full credit to mum & dad as this plan would not be possible without their foresight and savings and wise investment and ability to help me buy my flat, which is my pension and security (which I may not need!)

Thoughts for the future

18 Feb

When I think about my life  two years ago before I found out that I had a brain tumour it was something like this:

I was falling in love – I had just met the person who would become the most important person in my life over the following two years, and who is still the most important person to me despite recent changes in circumstance. If you can still describe people as honorable, that is one of the words I would choose to describe him.

I had just found out that I had got the job that I’m doing now which I love – after years of seeing my friends in career jobs and knowing that’s what I should be doing I had found something that suited me.

I had found my place in a country where I never really felt at home – I’m not a real free spirit, I don’t have dreadlocks, yet I’m not suited and booted, and I’d found my little place where it felt like other similar people lived.

I had found real, true friends in a new city – easier said than done, believe me.

These things still stand. In fact many of the ties are stronger; the job has been boring a lot of the time, and the money shit, but the support invaluable. The friends have been incredible, and the boy – I physically couldn’t have done it without him. In fact without him, none of the above would be my life any more. Unfortunately the whole experience took it’s toll on him, but in my mind there’s hope yet. He’ll heal, and never have to go through this again, yet will be stronger for it.

The future, well, things are going to change, and today, this is my plan. I am not saying it will stay the same, but this is what it is today.

I will work and work and work until I get a promotion. I’ll have my treatment, and work less, and see where I am. If I am a lot better, in a stable place, then at the next scan, in December (?) I will rent out my flat, and travel to SE Asia for 6 months, and then on to Australia, get a working holiday visa and stay for a year, then see where things take me.

Let’s be fair. I have savings, a brain tumour which if it doesn’t stabilise will need chemo and I’ll need proper care. I have a life expectancy of about 5-10 years, and I’m damn well going to enjoy them. And if it’s longer, then wooooo, I’ll still have done all the things I want to do and not given over my youth to the rat race.

You don’t have to live forever you just have to LIVE.

Day One: A New Journey – Starting Out Alone

15 Feb

Last time it was a problem shared a problem halved, then a problem shared again a problem quartered etc etc, and as time went on the problem got smaller and smaller for me, and larger and larger for everyone else.

This time I’ve decided not to tell anyone.

There are a couple of reasons for this.

1) Last time it was straightforward. I have a brain tumour. I’ll be having an operation, then it’ll be gone. I’ll be better and I’ll get back to normal. A very simple, or so I thought, process. In the end this caused more hurt than good. It meant that many people worried for a long time why I wasn’t well once I had had the operation, whether I would get well, and when this would be. How long is a piece of string? This is such a hard question because no one knows the answer. My answer was to class myself as well post-operation. Good days and bad days but not as someone with a brain tumour.

If you were pumped full of sedatives which slowed your brain, gave you short term memory problems, insomnia, pins & needles, amongst other things, and sometimes didn’t even work, but this would probably be the situation for the rest of your life, do you think you’d be able to cope with anyone classing you as unwell? You’d probably just want to get on with your life and put a tumour behind you. Scans would become routine, as would medicine issues. At least the tumour would be mostly gone.

2) This time, I have a brain tumour which can’t be operated on. There is no D-Day. There is no countdown. I always knew that they couldn’t take the whole tumour out. It is too close to the centres of movement of my left hand side, and who wants to be paralysed? But, the thought was that it would regrow very very very slowly. Over years, and I hoped that a bus would kill me before then. Maybe at 35. Or failing that, or actually preferably, by 2022 someone would have invented pioneering medical treatment to solve the problem and kill it.

Instead it is still a grade 2 slow growing astrocytoma, but it is growing agressively. Even I could see on the scan, there was a large difference between June and December.

So the lack of D-Day means what? Well, I have to have radiotherapy and probably chemotherapy.

Firstly radiotherapy. There’s no fixed date to start. I can start in 6 weeks or watch and wait then start when I want.

Medical opinion is split but I am decided so far that I am going to wait until the next scan to see exactly how aggressive it is. Stupid? Maybe. But treatment has one chance, so might as well give it a bigger area to blast. That’s why I’m not telling anyone. Why have everyone else share the burden?

I think it’s going to be a hard one. The only thing stopping me from crying constantly at work is that I am worried it’ll make me have a fit, oh the irony.

I flit between two mentalities: I can do it, I am the strongest person I know – there is a reason that this is happening to me. I wouldn’t be going through this if I couldn’t beat it. And secondly, why me?

I had my life back or at least I believed I did.

I am living with cancer, not dying of cancer

14 Feb

This is the phrase my neurologist used today.

I wonder whether he has ever had a tumour?

There are so many questions that are screaming around my head, and one 45 minute appointment isn’t really long enough to ask them all.

1) Why did the surgical team tell me that they had taken os much out if in reality they hadn’t removed that much?

2) What do I do now?

3) Who do I tell?

4) How do I find out more?   It  is pretty hard convincing myself to go to bed now and sleep when I would prefer to just stay awake researching ‘what happens now?’

5) When will this all be over? Probably never. Median survival rates c.10 years for the people will the best prognosis, i.e me. Given everything I know already about me, my kind of tumour, its location, size etc, I am likely to be in the luckier group. But 10 years, is that 10 years as me, or 2 as me, and 8 as a vegetable?

6) FUCK.

7) When to start the radiotherapy? Not til after the wedding that’s for sure. If it’s already in my damn head it can stay there and not get any bigger. I am going to be a bridesmaid.

8) What are the side effects?

9) What about kids?

Oh hang on, that’s not even important…Bye bye any kind of date. Oh hi, my name’s X and I have a BRAIN TUMOUR. Now that’s an opener. If you love me I might die on you. Great.

10) How will I ever fulfill any dreams? I am not the girl who dies of a brain tumour. I was not born to die like this.

February 2012 – Maybe this is destined to be my only live blog?

14 Feb

2011 (Note. the months not marred by sickness are full of holidays)

March 31t: Awake Craniotomy

April/May 2011: Recovery at my parents’ house

May 30th: Back to work

June: Glastonbury

July: Ibiza

August: Madrid

September: Birthday, Seizures

October: Whitby, Seizures

November: Panic Attacks

December: Istanbul, New Medication, Christmas

2012

January: Emergency scan

February: Your tumour has grown.

Hello 2011…it’s March already and so much has happened

28 Feb

I had almost forgotten this blog existed – I hadn’t posted for almost 6 months.
It has been a very quick, and very hectic 6 months. Hectic really does seem to be the right word to describe life at the moment.
I was just getting into living in London again, and had just moved into a new flat in Angel with two flatmates, as well as moving into my first department at Dare (production) when I had another seizure.

My first seizure happened in August – or at least that was the first major one, where I was taken to hospital – I think I might’ve had the first one in July when I was travelling in Guatemala with Anna. I woke up one morning with a really swollen mouth, as if I had been bitten in the night. That would become the ‘tell’ of the seizures, well, the ones which happened when completely asleep instead of as I was drifting off or waking up.

So in November the seizures continued, to the extent where I was referred for a CT scan, and then an MRI. I was attending a course – IPA Level 1 – and had to present to the rest of the people on the course when the nurse from the doctor’s surgery rang me and said, ‘We’ve had the results of your MRi, and they’ve found a tumour.’ Not the best way to hear it.

The next week I saw the neurologist, Dr Holmes, and the neurosurgeon Mr McEvoy. I will be eternally grateful to Rich’s parents for pulling strings and getting me a consultation with him as he is known to be the best in the country, if not the world.

Mr McEvoy took me through the imaging and showed me my tumour. It is the size of an apple, and sits above my right ear. He then explained that he would have to do further tests to see exactly which parts of my brain it had taken over, and whether they would be able to remove it.

Cue a two month wait before anything even happened. This meant a complete crash at Christmas. I think I had expected everything to be sorted out by then, when in reality it was only just beginning.
In January I had the promised tests, and got some good news – the tumour had not affected any of my brain functioning, i.e thinking, memory, IQ. And the bad news, which was that it was sitting very close to my motor nerves. (I’m not sure if nerve is the right word, but to the motor strip anyway)

Two weeks ago I saw Mr McEvoy again and he gave me the choice of having it removed. The plus, it will give me a better prognosis, and the minus, well I may lose the movement in my face, lips, tongue, throat and left hand side. Rock and a hard place?

So I am now waiting to hear when my surgery will be, and what a wait it is. The pressure is okay most of the time, and then it hits, like a tonne of bricks and knocks me entirely off my feet.

This evening for example, I had been at work all day, very busy, and then come home, cooked a quiche, went for a run, watched some Mad Men, and done some boring house stuff like paying bills. Only at 11.30pm did I crack, and cry, and ring Dad because who else can you ring at 11.30pm??

I really just want to know. I want someone to tell me whether I will live for 2 years or 20 years, whether I’ll grow old, have a career, get married, have a life, have children. All of those things. I almost feel that if they are not a choice, then what am I doing here.

This is why I am adding to Project Sixty Eight, because even though that was about travel and exploring, and this is not, I feel like keeping them on the same blog will make anyone who reads this understand that they should jump at every opportunity they have with their arms wide open. You NEVER know what is going to happen tomorrow.

Back in Blighty

18 Oct

I can’t believe I’ve been back for over a month. A month of visiting parents, friends, house-hunting, trips to ikea, painting & starting my long-awaited new job at Dare.

Hectic doesn’t really cover it. Strangely when I was in Costa Rica I spent the last few days knowing that as soon as I got back to England I would realise that nothing had changed in the 2 months I’d been away, but while I spent those precious hours cycling to the beach in the bright sunshine I somehow imagined London to be equally bright and sunny…nothing short of fantasy really!

When I got back even Heathrow airport smelt the same as ever (not that I can describe it).

After a few weeks to sort out a place to live I started work. Now i’d known about the job since I went away in July, but it didn’t seem real until the Sunday night when i was trying to work out what to wear! The first day flew past in a flurry if presentations and introductions. I can safely say that I forgot almost everyones name straight away. In a way starting a new job is like being back at school-you try and figure out where you fit in while avoiding the school bullies! Luckily everyone was really friendly.

Now in week three we actually have real work to do. We’ve been given a creative brief and have to come up with a concept or two. This is definitely easier said than done-I will never underestimate the time & effort that goes into a creative idea. It’s a real eyeopener being put in the position of everyone else in the agency. Working in Account Management you really bring together all the diverse parts of the agency, as well as the client, so it is a huge help if you understand the time constraints on everyone else.

Anyway, this post could go on forever…I’ll continue it tomorrow.