Tag Archives: brain tumour

Working 9-5. I wish.

21 Apr

So, I think this post might come out as a bit of a moan, so if you are looking for positivity, skip to another blog.

Over Easter I went on the most brilliant holiday, and spent a week sleeping like a baby. I did have a couple of ill days but they were probably due to the flight. I think flying for longer than 3 hours makes me poorly, which is really really shit considering that travelling was/is/hopefully will continue to be something that defines me.

I got back and had no signs of jetlag, which was pretty incredible given that my cousin was wiped out so I kind of expected to be a little tired. I just through myself back into work. I was ill at night – fits leading to either no or little sleep, which meant that by Friday I was wiped and couldn’t go to work. It made me think – actually by Friday every week I can bearly move due to tiredness. My body has to be dragged around the office and I can hardly keep my eyes open. That’s fine when I’m having a non ill week which seems to be 1 in 4, but when I’m having an ill one it just increases the seizures.

It’s made me think long and hard about my hours at work. As usual my boss and I had the hours at work chat. He agrees, yes you must try and work shorter days, try and get out by 6pm. But, as usual I stay til 7pm every day, as usual I don’t take a lunchbreak, as usual I sent emails from home before and after work. And it doesn’t seem to be better if I do make it out early – I just take my work home with me in my head – it stays there all night and I can’t sleep for thinking about all the stuff that has to be delivered the next day. So so stupid, because then the next day a zombie is sat at my desk. And I know I’m doing well, but I just feel like I have to do more and more and more to get things finished, to then get the next day finished, and the next. Just wishing the days away, but what for? There is no end goal.

Once one day is over and one project is off my plate another one will pop up, so what is the point of carrying all of the stress in my head? All I know is that there is no happy medium, and that even if I weren’t ill I’d be tired. I can just feel the tiredness more now because rather than being wiped on a Friday evening, I am now wiped through Saturday too. When will it end? Once I’m working so hard that 7 days run together and there isn’t any recovery time?

The question is ‘what to do?’ The aim of working like this is to get promoted, to have a little more money so that if I can’t work as hard it won’t be impossible to live working less than full time, but is it worth killing myself over now?

I say I love my job, but it is my life right now. If I didn’t work where I do, what would I do? Also, what would the company do when they found out I was ill? Legally they couldn’t do anything but support me but in reality they could do whatever they wanted. What do I even want to do?

How does anyone find a balance? I know it isn’t healthy to work 9-7pm every day and have a mind which races and won’t shut down at night,  and then be too tired to do exercise/do anything at the weekend. Too many things to think about…

…and that’s without even considering the brain tumour.


The meaning of time..

9 Apr

..is never something we consider in depth. We say things like,

‘I haven’t got enough time to do x…’

When we really mean that we don’t consider x, as an activity, important enough for us to dedicate a part of our life to it. Or maybe that we consider doing something else more pressing which pushes x off the radar. Depending on what x is, by declaring it unimportant we can sometimes bin it forever, but there are some things which will rise back up day after day. There are things that will not be done if you don’t do them. Even if you push them off the list time and time again.

Mundane examples: cleaning the bathroom, taking out the bin, paying the electricity bill.

These Xs can be pushed aside due to ‘lack of time’ but you can see repercussions quickly and so interestingly time can be found. No one wants to live in the dark in a rubbish tip.

When it comes to making decisions it’s easy to plead lack of time as an escape route. However if you knew you were going to end up living in darkness unless you decided to pay your electricity bill you would make time to find out how to pay it and actually do it. You might leave it right until the last minute but it would be done.

If x is a decision in life that’s easier to ignore especially as it’s one thats going to take a lot of time to think about, it’s easy to replace it with small daily tasks. But by ignoring it we’re declaring that it’s not important enough for us to dedicate part of our life to.

Huge mistake if it is our life that is in the hands of the decision.

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.

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.