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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.

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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!

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!

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.