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 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.

Joy vs. Fear

24 Feb

Isn’t life strange – all in one day you can experience so many emotions?

I have discovered that I work with some incredible people. I say discovered, but I actually already knew this. I told my boss that I would need further treatment against the advice of my neurologist who said I would be judged. That may be but my neurologist is a 55 year old man working in the NHS. I explained to him that I work in an advertising agency where everyone is really chilled out, and works incredibly hard. One of the most important qualities is a clear head, which you can’t have with something this big hanging over you.The other big thing is the smile on your face – a frown isn’t particularly inspirational for anyone. My boss’s reaction was really great – manly as expected, but great all the same. He put to rest any fears I had and I know we’ll deal with my tiredness when the time comes. For the moment I’ll try and take time off if and when needed without feeling guilty.

I can talk openly with the girls at work who I don’t see outside the office (except for at the pub across the road) – they know me well enough to know where I live, that I’m single, my age etc, but I feel totally comfortable saying oh by the way I’m going to have to be having this treatment, and there’s no hugging needed, just a trip to H&M, some work gossip about someone, and reassurance that if I ever want to chat they are there, which is perfect, after all they are colleagues and you don’t want to be wailing in all of your meetings! So Thursday was pretty joyful.

Fearful too. I worked late, got home and went to bed, boring boring, then woke up and hour later soaked to the skin, sweating and shaking. By now I am used to it and thought, oh god not another panic attack. They happen completely out of the blue during the first hour of sleep, when your are in REM sleep – that kind of dream state, almost like having a nightmare yet you don’t have a nightmare, you just wake up covered in sweat and unable to breathe. Absolutely horrible the first time it happens (back in November for me, when I was on some new medication, which needless to say I quickly stopped) – I wouldn’t wish it on anyone. The odd thing is I have been sleeping well, despite the diagnosis. I think initially I was so emotionally tired I took a while to get to sleep then I just slept and slept, whereas now I’ve taken it in and so have absorbed it consciously but my unconscious is thinking more and more.

The weirdest thing is I know exactly was has set off the panic attacks. Ever since I came back to work after my operation I have had a fantastic manger, Alex, who despite being crazily young has a great grip on reality and has never once judged me on what I see as extreme lack of concentration and slowness on my part (I do set a high bar but then I think the operation has affected my levels of concentration and abilities at work). She told me on Thursday that she is leaving the agency for a fantastic job opportunity – I couldn’t be more pleased for her, I would take the job in a second, especially as it’s abroad, oooh the jealousy. When I’m well I’ve got the full intention of doing something similar! I assume that this announcement rocked my subconscious a bit, even though in my mind nothing has changed. I may get less babysitting, but as it was with my ex-boyfriend, less babysitting has only been a positive thing.

After the late working yesterday, panic attack, no sleep, and early start, this is what I was thinking all day at work and I actually really believed it…

It may seem sickly sweet and too positive to be true, but no joke, I would normally be moaning about being tired and how I couldn’t wait to get home, but I just thought, there is a reason you couldn’t sleep, you didn’t do badly in that meeting, you’ve just had a great lunch with those clients, everything is going to go well over the next few months.

I am now home and exhausted, but have the balcony door open as the first days of Spring are here, and have a wonderful friend filled weekend awaiting me. At lunchtime I met a new team member who talked about everyone having a path set out for them, and how we should’nt try to fight what happens to us because it’s all part of that path – a hardline version of ‘everything happens for a reason’ I questioned this – what if I want to move abroad after my treatment finishes, and had I not been sick I may’ve wanted to live in London for longer, been more settled (this is still not decided!)? He answered with, well what if these questions are all part of the path (He doesn’t know I’ve been ill) and the decision that you take is the one you are destined to take.

Everything that happens on our journey does so to teach us something, and to make us into the person we will become.

It’s definitely something that intrigues me, and I’ll be posting about. In the meantime I’ve sent him off to watch the Adjustment Bureau and Sliding  Doors!

Fear and introspection

21 Feb

One of the things that has been an almost constant presence in my life since the diagnosis, no matter where I am, is fear.

I have been afraid of having seizures when I am alone in case no one finds me, when I am in public in case I do not have time to tell anyone what is happening, when I am at work, in case they decide I am too sick to work and don’t let me keep my job. I feel scared on public transport in case I have a panic attack and cannot get off. I am scared that I will be this way forever.

When I am busy and have slept enough, and realise that I have lots of support all of this fear melts away, yet I still have moments where I am scared of feeling scared. I wake up in the middle of the night having a panic attack, or start to breathe shallowly at work and think I’ll be sick on the desk.

Writing this post has unnerved me, as I now feel the familiar knot in my stomach, but I had to after reading this, which has inspired me to have more courage and fight the feeling of fear. You can be afraid, just like you can be weak, but with a strong mind you can admit you’re scared, acknowledge it and overcome it.  I hope.

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” ~ Nelson Mandela


21 Feb

Monday was the end of the line. 6 days post consultation my body & mind which had kept going through work, going out, seeing friends, a party, a date, an ex-boyfriend coffee, a bridesmaid dress fitting, and at least 4 ‘I have to have more treatment’ conversations, had given up. As I walked through the door with my Sainsburys shopping I was seriously worried my legs were going to go from under me. I was supposed to be calling my best friend to arrange a holiday, calling my mum to sort out my cousin’s visit, calling my date back, cooking food for the week, and all I could do was crawl into bed. I got up again later, made some dinner and emailed work to say I’d be off sick today. I think it’s the first sick day I’ve taken since returning after my operation 9 months ago.

Today I’ve slept. When I did get up I showered, then sat down as if hit by a tonne of bricks – after showering! God, I feel like I did when I was in hospital.
I’ve been reading Anti-Cancer which is written by a medic who was testing brain theories using an MRI scanner and scanned himself only to discover a brain tumour. He had it removed but relapsed and talks about the feeling the second time around when you can’t understand why your body is letting it grow in the way that it is. He talks a lot about cancer fighting foods. Luckily I seem to eat a lot of these already but I’m hesitant about my new regime of three cups of green tea per day!

This however is better


How much do you pay your cleaner?

19 Feb

I met up with my now ex-boyfriend today. I don’t know whether to call him ex-boyfriend or new best friend. Unfortunately this little tumour destroyed our relationship; suffocating it before it ever really had chance to grow.

It is always going to be a little painful to meet up because it is one of the few real ‘What if?’ moments. I’d be lying if I said I didn’t miss him. But I’d also be lying if I said I appreciated every moment we spent together when we were together because I didn’t, I took it for granted that we’d grow old together and I didn’t realise that things were rotting away right under my nose.

But you know what? If you really love someone what you want most for them is for them to be happy, and if this is the way it has to be then so be it. It may seem strange that we’re comfortable being friends, but what would our relationship have been based on if we were unable to do that after everything we’ve been through? Nothing.

It hurts a lot but the pain will pass, and it would hurt a lot more to lose him completely. And what about the future? Who knows. It’s unpredictable – that much is clear.

So what about the title of the post? Well it is a mundane question from a mundane conversation at a cocktail party that the ex-boyfriend went to. When life becomes about how much you pay your cleaners, you’ve got to wonder what they hell you are doing surely?! I will never ever become one of these people. Christ I am getting annoyed just thinking about it and I don’t even have or know anyone who has a cleaner. In fact it’s a good thing I wasn’t there as I don’t know what I would’ve said in response!


19 Feb


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.