What a thing to happen.

It's funny but, despite everything, I really am quite glad that this is happening.

Obviously there are some downsides but I wanted to capture this feeling of positivity that has come out of the experience overall. I've touched on it before, and it is definitely still there throughout the down days - but the underlying feeling for this entire situation really is a positive one. Odd.

Several reasons:

1) Timing.
There would never be a brilliant time for this to happen, but if I had to choose when would be best - then it would be now. Quite a few actually spooky things came together to make it all very convenient. Mum starting her MSc and being in London. It happened on the exact same day she started her course and was staying with us anyway. Last month it could have been Somaliland or Timbuktu.

And we're only six weeks moved into our brand new house, which has provision for me to sleep downstairs if I need to, post surgery. And can accommodate mum in the spare room. What if it had happened before? I don't think we'd have still got the mortgage to be honest.

Also, I'm still relatively new in my job but I almost accepted a contract offer instead. I chose lower paid permanent work with a company I believe in for a team that I knew would work well together. What a decision was that. Work have been immense in this entire situation and I have totally lucked out.

And the other thing is that Beka is on maternity so I get to see loads of them and the kids.

2) Time out.
This is forcing me to take a little time out of life, and try a whole new pace. It wasn't easy at first and didn't come naturally - I really missed work and the structure and motivation it gives me. But I'm enjoying it more and finding new ways to motivate myself now that I'm getting a bit stronger. It is a lull right now as I count down to surgery and finding out what side effects I will need to contend with - and I fully expect post surgery to be focussed on returning to work but I know it will take a while.

In the meantime, it has been a very positive experience trying something different in terms of structure and motivation. When else do you get the chance to do that?

3) Contemplation.
Time to think. I am being forced to think about what I really think. And I'm really enjoying it. I just spend time thinking, and I don't feel guilty about it being a waste of otherwise useful time. I don't sleep much and I don't get out much, and I've been just thinking. I love thinking! And then writing down my thoughts. And then moving them around a bit until they make sense. I think I will miss this when normal life resumes, and I don't have time to sit around in my pants all day thinking of things to think about. (I don't sit around in my pants, I have pyjamas on at all times).

4) And where am I?
This one is the real crux but I've banged on about it for ages already. I just can't believe how I have managed to end up here, with everything anyone could want. I don't need anything else, I have just really landed on my feet and although I knew I was happily sorted this situation has really hammered it home. I'm so lucky. If everything went totally tits up now, I would be happy to have reached this point. I think that it totally amazing and you all know who you are that got me here.

5) Created a milestone.
This was a complete surprise, and a real bonus. It happened almost immediately. I have been feeling kind of old recently, and a bit behind in my life goals. A bit pressured and kind of needing to get on with things. I'm 33, and I remember so vividly my mum turning 33 - I made her a birthday card. She was at university studying medicine and I was eight years old. She also had my sister, 10. That is just incredible what she had achieved by my age and this weighed on me as I reached my 33rd birthday.

On top of this I have really started to notice that I need to work harder to remember things, and stay focussed and hearing and general little niggles reminding of the march of time. I was starting to feel old.

But not any more - how weird is that? I'm only 33! In five or ten years time we can look back on this and say wow remember when you had a brain tumour - you were so young! You were only 33! This has created a big milestone in my life, and when you think of it in the grand scale of my (hopefully much longer) life, 33 is nothing. It's the beginning. This will be a huge milestone and something that we will always remember. In a good way. So just to clear things up, I'm not old - right?

6) It's so interesting.
Vain! But really, this makes me more interesting - especially to myself. What with the self contemplation and the whole process, it's just really interesting. I'm watching myself deal with this and I can't wait to read all this back when I'm done and think wow did I really think that - I'm mental. But I'll have a record of how interesting it is. I hope its interesting!


After surgery I will know what the full impact of this will be on my life, and that is obviously the big worry right now - what will I physically have to cope with and work through? But it's good to see that at this point I feel a positive impact of a brain tumour. I had always been pretty sure that I'm a massive pessimist, but worryingly / surprisingly / interestingly I'm not sure I am anymore. That's weird.

This time next week I'll be waking up about now, with a brand new space in my brain for more crazy thoughts. Get ready Uma, coming to get you.

Reactions to bad news.

I've been writing this post for ages, and just don't seem to be able to get much sense out of my thoughts, but there definitely seems to be something there that won't go away. So I'll try again.

There is something really interesting me about the reactions people have to bad news, or difficult situations. It isn't the reactions themselves (although that has been interesting) it's more the difference between what I have been expecting and how I've got it wrong.

This is pretty much the first time I've been on the receiving end of this kind of attention, and it has firstly made me analyse what I have done in the past in similar situations, and what I would want to do now. My overwhelming feeling is that concern and well wishes are really apparent and obvious, regardless of words and actions - so there is no right and wrong. It really doesn't matter.

Secondly, I love where I have called it wrong. I am really interested in people, and relationships, and I like to think that I really know the people I know - including how they will react to things like this. But I have been very wrong, and I have loved the surprise of that.

This entire situation has thrown up some real positives in my life (different post coming on that) and one of the main ones is realising how many people are out there that care about me. The way people have reacted shows that they understand me, and they are on my wave length and are able to connect in their own way to make me feel better. With real thought.

It has been a revelation to realise that so many people know me and I have been challenged to rethink a lot of my relationships, in a more positive light. It has been great.

An unexpected pleasure.

I've been really surprised how much I've enjoyed writing over the last two weeks. At first, it really was just a brain dump to get the thoughts out of my head in the hope I could let them go. But it has become something that I really look forward to, and spend a lot of time thinking about.

There is a bigger piece to this brewing about how it feels being so open, which I am not at all used to, and also how it is affecting the people closest to me. It's on the way, but in the meantime this is really just a recognition that I enjoy the process of the writing. Totally unexpectedly.

I always had a bit of a romantic view of writing and it's something that I've really wanted to be good at - but was very paranoid about. I never really had anything to write about before and I really like having the time to think about it now. It is keeping me busy, and is forcing me to think about what I want to say. It also helps me feel much more in control and self aware.

But I wasn't expecting to enjoy it so much!

It is really wonderful to hear that people are reading it too. I love watching the page stats go up and wondering who just read that? What did you read?

And up again.

I've had a really nice day today. I wanted to log it as I feel like I've been focussing a bit on the negative recently and this shows that really it is just up and down. That's just how it goes.

It was a beautiful sunny day and I took myself off for a walk. I had a lunchtime visitor, I dried some washing on the line and I watched a film. I even had an afternoon snooze on the sofa. When mum and Olly came home we had a lovely evening together and now I'm really tired and going to bed, so hopefully I will sleep.

Again, I feel really lucky. We have been making exciting plans involving drumming, which I'm sure you will hear about, and I have just the most amazingly understanding friends. I've got a really great load of things happening in the week ahead of surgery and I'm going to make the most of it. What's the worst that can happen eh?

Hurray xx

What to say?

One of the things that has been quite difficult to get through is deciding who to tell what has been happening, and how, and at what point, and in what way... how much detail?

It feels like such a responsibility to lay on someone, and isn't something you can just drop into conversation, obviously. I have actually been writing a post for a while about the different reactions I've been getting from people, but it just isn't coming together so I'm abandoning it and turning it into this one instead.

I've been through a journey with it, and I've also been quite chicken making my mum deal with a lot (most) of it. We had something similar last year when Olly and I decided to get married. I didn't want to offend anyone by not telling them, but I didn't want the attention and hysteria that comes with the conversation - and that was with a much happier story!

I don't think I handled it right when we got married, I think I led some people to believe that I didn't think they were important enough to tell, and I've regretted that a bit. Mostly it's just shyness, but it played on my mind when debating what to do with this new news.

So, who to tell?

Well, family obviously, in the beginning. I left this mostly to mum and with her medicalness and brilliant manner she was able to tailor the news accordingly. Same with family friends, mum did all of that, which was a huge relief. She could relay the messages back to me and I didn't have to get involved at all.

Work. That was a strange one as I'd already taken a week off sick which was playing on my mind - migraines are invisible and I always feel like such a fraud! So I tried to keep them up to date throughout the process which means they got the news pretty much as I did. Quite funny emails to read back now actually. Although must have been a shock, even though I was trying to keep it calm and not so dramatic.

Friends. Umm. This was hard. At first I only told the people that needed to know because I had to change or decline existing plans. My primary concern was that they wouldn't worry and I spent a lot of energy downplaying everything. It's funny how responsible I felt.

And then I got out of hospital and was on a real high, being home. It was a really fantastic time and I felt so LUCKY and just on top of the world (it was the first time I hadn't been in excruciating head pain for about 10 days, and I was on a shed load of drugs...). And I was home with Olly. The news became less relevant and scary and I was being really positive.

I took the opportunity of my mood to make a list of all the people I wanted to hear the news from me, and I emailed them - including the people I work most closely with, although they were all slightly tailored. I tried to make it upbeat and funny, and positive and fun.

People were impressed and I was proud of myself. I felt like I'd impressed everyone with being so practical and positive. People even said that. For a while I was satisfied. I thought everyone who needed to know now knows, they're not worried, and everyone else will find out when they do and it will be fine.

And then I started to get really down and miserable, and all these people thought I was totally fine and there was nothing to worry about and it drove me INSANE. It was totally me that had engineered the whole situation and now here I was demanding more sympathy and attention which I had been desperately trying to shun in the first place. Contrary? Me?

And so, to my shame, I started to tell people for shock tactics. Hello woman at Thames Water - very sorry about that (although I didn't get passed to the debt collector so would probably do it again). Woman in the scarf shop - you didn't really need to know the EXACT reason I was buying a scarf... And my lovely hairdresser, who was incredibly kind and had exactly the right attitude, I hope I didn't make it too awkward (who am I kidding!).

Culminating in a situation yesterday at the hospital, where a woman came to tell me she'd like to give me a leaflet on epilepsy. I just looked at her and said, "I've got a brain tumour, not epilepsy. Thanks though". She looked TERRIBLE. She had no idea what to say and literally backed away from me, apologising. And then I felt terrible too and it was just, horrendous.

So I'm now hoping to go full circle. Things get better and they get worse, depending on a variety of factors, like what I've had to eat today and which film I have just watched. Or have I just been drawn a diagram of how to enter one's own brain.

But I think (hope) I'm coming out the other side. I think the trick is to answer the questions, but not to volunteer too much detail. Keep it brief, but real. And try and gauge how green the other person is at all times!

Do you know what - any tips on this would be really welcome. I'm sure there's a whole load on the internet but I'm avoiding forums. But please tell me if I've gone too far, or been too mysterious. It really seems very hard to balance.

A rude awakening.

This morning, I was rudely awakened by the dustmen - it's a shame it isn't Wednesday or that would have worked much better. At 5:30! I actually tutted at the loud slow moving lorry with the flashing lights, and then remembered that I'm usually awake by 5am anyway now and had nothing much to get up for that couldn't wait.

So had a little chuckle and turned over.

A funny old day.

I had a really good chat with Oliver tonight before he went to chestershire club, and it just reminded me how incredibly lucky I am to be surrounded by brilliant people. Talking, honestly, can solve anything.

Anyway, in this really good chat, I was explaining to Oliver how I have been so up and down all day. About three times each I think, really quite a yoyo. I started off feeling this was totally unreasonable, as well as annoying as I just can't keep track of myself and control it. But then I realised actually that today has been a really big day in terms of news. And I think that it's all coming out now. I am panicking, big time. And that's a good thing.

I'm really glad Olly was at the hospital with me. It was useful to get his opinion of what happened this morning to overlay on my own thoughts. It turns out we were both quite shocked at how negative the news was, when we'd been really led to believe so far that it wasn't so bad. Now I know the worst, nothing has changed in reality, but it seems much more real. I am really very scared now.

I have been thinking a lot about how the next week will be and I think the panic will now grow right up until surgery. There is just too much to think about. I think I am more worried about how worried I will be in the run up, and how that will manifest itself.

So the learning for today is that it's ok to have an up and down day, when I've been dealing with new information and shock.  But tomorrow I would like to be a bit more stable (less panic, less crying) and more calm.

Also - unconnected - I've been reading some Sam Harris about lying which is really good. But hard to implement. Love it though.

Too much information.

Well. That was certainly interesting.

We went to the hospital this morning and had some really quite revelatory information. I have been known to be contrary (!) but it seems throughout this process that just when I feel I have a handle on the seriousness versus reality balance, I am just thrown off the other end.

I am very impressed with King's, again, after today. I was seen incredibly promptly, and not just by a nurse, but by the registrar surgeon on my case, two support people who ensure I have what I need support wise pre and post op, as well as a physio nurse whose team will be helping me get back to full working order, whatever the side effects will be.

They sat me down and went through the detail, and took my questions patiently and fully as a team, for as long as I kept going. I wasn't rushed, they listened and explained as much as I needed and really gave me the feeling that they were there for me. I came away with contact details for the team, details of a charity and support group, a reminder that they are always there for questions and a recommendation of two other young women in my situation that I can speak to at any time. I really was very impressed.

And completely shaken up and shocked.

I did ask what they were going to do, and I am glad that I did. I'm not going to write it down but I will tell you in person if you're interested. Logistically it is all incredibly clever and I liked how they were so passionate about it. But it is also quite gruesome when you think that it is going to be your own head.

Mostly so far people have spent an awful lot of energy explaining to me how this is routine, and simple, and although serious, quite straightforward. I know that people think it's comforting, and if they're medical then I take it more seriously. But sometimes (ok mostly) it's annoying when non medical people say "I just know everything is going to be fine". Seriously? Is it? Oh OK thanks, what am I worrying for then?

Woops. Side rant.

Anyway, so when I arrived this morning and they asked what my understanding was I think I tried to be brave and positive, and that worried them. They shot me right down and explained exactly how dangerous it is and all the possible going wrong scenarios. More worryingly they said very clearly they didn't know what it was, or how bad it is and they won't know until they get it out.

I know this of course, but until now I had understood that it was almost certainly benign and pretty clear from the scan that it shouldn't be too difficult to remove. That's not what they said today. In fact they went out of their way to prove the opposite - although I am taking it all with a massive pinch of salt. I don't think they were trying to scare me, just be realistic and manage my expectations. I appreciate a management of expectations!

Just a bit shaky about it really.

I think the main thing now is to get through the next week without too many panic attacks or scary thoughts about the long term side effects. I plan to do fun things now and start being less morbid. Might even go for a walk in a minute. When I've just, you know, had a little rest...

Early morning jitters.

I'm attempting this from my phone for the first time. Not sure if it's really a good idea not to have a little censor later, as it is predictably five in the morning again.

I knew I'd have a spot of trouble sleeping last night. I felt much much better when I went to bed than I had during the day. We had a really quiet companionable day. I managed to cook which I hadn't for a while and I love cooking. And Neville was being brilliant.

But this morning is my hospital appointment, and although I'll probably only be meeting a nurse and talking about the medication I'm on, it has been playing in my mind.

It's going to be more real. The surgery. I mean, there's no messing around now. This time next week I'll be being admitted tomorrow. So really it's time to start asking questions and preparing, and I'm looking forward to getting information on it so I can prepare, but it's still daunting and scary. And it doesn't take much right now for anything daunting and scary to just go round and round for hours.

I want to make sure I ask all the questions while I have chance. But I don't really want to know the answers. Except I do want to know as long as I have option to say nahhh, yer ok thanks. Which I don't. That might be the best paragraph I have ever written.

So I've been awake trying to work out what I'm worried about the most and why to remember to ask. It's actually hard to decipher specific things I'm worried about instead of the big whole so I think it's been a useful exercise:


Side effects

• Long term memory problems / lack of ability to concentrate or multitask (I love my job but it is busy and manic in periods and I need to rely on these previous skills).
• Temporary loss or impairment to speech / sight / movement obviously. Just interested in what they are expecting.

Recovery

• Getting back on my feet, most importantly how long until I can get home.
• Independence during recovery. Ok I'll cut to the chase, bedpans and commodes are plaguing my thoughts. I just want to be able to use the the bloody toilet on my own. If possible.
• Pain. How much will it hurt? (I really don't want it to hurt).
• What drugs will they expect to give me and for how long and what are the side effects.
• What's the ward like (can I see it?)
• When do they expect I'll be able to start running again? Fly again? Be me again.
• Are there any provisions for counselling and / or support during recovery?
• Can I bring my laptop into hospital?

Surgery itself

• What's the deal with the head shaving, or any other prep I might need to do.
• What is the procedure. I want to know logistics and details. What do they screw my skull back in to? What position will I be in? How long... What's all this about a gamma knife?
• Do I need the groin thing. Yeesh. If so, when, because I have some serious maintenance to do. Which actually to be fair should be done before surgery anyway. And let's be honest, it's not the maintenance that's bothering me its the I getting injected into a groin artery. But still.
• Waking up post surgery, if at all possible, what the hell should I expect please?

There are some glaring omissions of course. But thought I better stick to questions I can realistically expect some kind of meaningful answer to. And I'm going to try really hard not to cry until I'm on the way home.

Ok. Brain dump over, should have don't this earlier I might have a little snooze now.

Super Neville Morley.

Neville is the most brilliant cat I have ever known. She has lived with me nearly all her life and she is totally awesome. She is very independent and she looks after herself. She is sometimes sick in the house which is really annoying but in general she is very clean and polite and really very beautiful too.

She doesn't slag herself all over people though. She likes to get to know you before she'll trust you. I'm like that too and I appreciate her taking the time to make sure she likes someone. She definitely likes me, and when I'm feeling rubbish there is a very good chance that Neville will know and she will come and make me feel better.

She is cuddly and friendly when I need her to be and over the last week has been my most constant companion, feeling sorry for myself on the sofa. Love Neville.

Next time you fancy telling me you're a dog person? Please don't. I don't care if dogs are more friendly to you just because they're a dog. You have to earn Neville's affection, and when you get it, you deserve it.



NB: this wasn't supposed to be a rant against dog people, but it does appear to have become a bit of one. I thought about toning it down (I did tone it down a bit actually) but am still going with the honesty route too. Sorry though dog people, I have nothing against you, or dogs, I just get a bit offended on Neville's behalf and am jumping a little too far to defend her. After the last week or so, I feel she deserves my defence as she really is just the best cat in the world. Look at this picture - just LOOK how lovely she is:

Super Neville Morley

Still on the hair.

It's been a few days now. Some people I know have seen it, lots of people I don't know have seen it but I'm very aware there is still a bit unveiling to do for most people.

What I wrote last week seems to have been a good talking point so far too, which is interesting. I'm glad I wrote it as that is how I was feeling at the time, but I'm not sure I have quite got my point across yet. Everyone seems to be more worried now about whether I think they'll be telling the truth about whether it looks good or not.

The thing is, I don't really care. It sounds mean, but it's not really what other people think that bothers me. Well, obviously I dont want people to think that I look stupid, but it's not actually my primary concern.

And it isn't that I think people are lying when they say it looks ok, I just think given the context there isn't another choice. I don't think it's untrue, it just doesn't hold much weight.

What is really bothering me about the hair is that I don't feel like me. I don't hate it - I can see that it's not terrible. I just didn't choose this and I would never have chosen this. I don't feel like it represents me and I don't feel like me. 

That's it really.

Well actually there is another element, and it's just the big reveal. I know when everyone has seen it and got used to it it will be just normal again. Hopefully for me too. But until that happens I will need to go through many meetings and many comments and compliments and many conversations about it. Really I wish it was totally invisible, that it wasn't important. But for some reason it is.

At least it's all short term though. Soon everyone will have seen it. In fact soon it will all be shaved off anyway, so actually this is all totally irrelevant.

Brilliant. Have only just realised that. What a waste of agonising.

So sorry for myself.

Being wide awake at half five in the morning is actually getting quite annoying now. People should write more on Facebook at 5 in the morning. Just for my benefit.

I'm having a down day. Or two. Maybe it a weekend thing as it happened last weekend too. So far I have waited it out before writing about it but there's nothing else to do and it might actually help.

Feeling very contrary. And irritable. If someone encourages me to rest it annoys me and I want to prove I'm fine to do things. And if they try to encourage me to do things I'm annoyed that I'm not getting more sympathy and doting. Basically I am being very attention seeking.

I'm boring myself even.

So I'm back in bed on my own feeling sorry for myself. I don't want to see anyone or talk to anyone. I don't want to get dressed or go out I just want to lie here feeling sorry for myself. And then write about it. Oh deary me.

It's really stupid as well because its the weekend and people are actually around. Tomorrow I'll be back on my own with no one around and then I'll really feel sorry for myself. 

And I've got period pains.

And a headache.

OK I'm done now. I do actually feel a bit better for writing all that down.

Henrietta let loose.

So I've been writing this for what seems like a while now, but given the whole ordeal has been less than two weeks so far, I really haven't. It's been very useful to write things down as I spend a lot of time thinking but actually writing it forces me to make sense of my thoughts. And looking back on this is going to be quite interesting I reckon.

I intentionally didn't lock it down, I'm not writing this for anyone else but I didn't want to fall into the trap of only writing for me so I've left it open. But until now hadn't really told anyone about it. Yesterday I set Henrietta free and it's been a bit strange dealing with that. It's not that I'm usually so private (I am) it's more that I'm not sure it's very interesting, or worse, accurate, because I'm just so all over the place. Obviously there is a vanity worry - what the hell will people think about what I'm thinking, but then after everything I've written about confidence and changing perspectives, I have decided to let go. 

When I started, it was really to capture the process of dealing with the idea. I was really interested to see how my mood would change and when I would deal with things and what would plague my mind in the run up to surgery. That in itself was a massive signal that I was only really concentrating on the time up to surgery and totally blocking recovery. It occurred to me last night that actually recovery is the main story here. Getting back to being me.

Now we're on the final countdown it is clear that post surgery and recovery will be a huge healing process that will also be useful to write about. Assuming I can write.

Also, I feel like I want people to know what's going on, although I don't actually want to tell them. I've written a page that explains the tumour and what happened and when I'm having surgery and I'm going to put a link to it on Facebook in a week or so. Then people can read the link if they want more info but not if they don't want to. I have been planning this, but didn't know where to post it. If I put it on here then people would automatically have access to my thoughts throughout the whole process - am I ok with that? 

I think I am. Well, not ok, but willing. Brain surgery is not brave, just necessary. Setting Henrietta free? That is brave. Hello everyone - feel free to comment!

... tumbleweed :)

A knife edge of emotion.

I've been to see Henry Rollins a few times in the past (won't be again) and I found it really irritating each he said "here's another thing..." and launched into a new topic. He got on my nerves quite a lot actually but he obviously thought this was really cool as he did it all the way through, each time I saw him. I feel a bit like that now. Here's another thing...

Emotion. I'm constantly on the edge of tears and it's starting to grate. I've always cried easily, films, books, adverts, articles anything can set me off really and I do enjoy a good cry - but now it just feels a bit predictable and indulgent. 

It's not a big thing, just irritating. It was lyrics a minute ago. I'm not crying at the tragicness of the situation (I actually have it pretty good here!) it's like if this was a film then I'd cry at it. 

If someone says something nice to me, I cry. If someone gets upset, I cry. If I have a random thought about something, I cry, then wonder why I'm crying, remember I have a brain tumour and carry on crying. 

Then, I just snap out of it. Get distracted, do something else and it's gone. Totally fake emotion. Very weird.

Mind versus body.

The last couple of days I've really felt like I've made marked breakthrough, mentally. I am definitely more positive and more motivated and more in control of things. I've made proactive decisions, got a list (did I mention the list?) and actually had plans outside the house with a goal in mind. It feels like I'm looking forward again instead of reeling in the shock I was adamant not to be feeling.

The frustration has been that my body doesn't quite seem up to it yet. I knew I'd been weak but moping around on a sofa all day is going to do that to you. I think I thought that just deciding to be strong again would kind of just sort that out. It hasn't.

Yesterday for example, this is what I did all day:

• Had a shower (a very quick one, short hait is brilliant in the shower. But it really took it out of me and I had to lie down to recover for twenty minutes)
• Was driven directly to the train station, where I walked about 100 yards and up about 15 steps
• Sat on a train in a daze, then walked about 50 yards and about 30 steps
• Sat in a car without moving being chauffeured like a cellabritty
• Sat / lay in a friends house all day like a primadonna
• Walked about 300 yards slowly by the sea (it was lovely)
• Was driven home to my door by the trusty chauffeur (in rush hour, having had no sleep herself due to toothy Flora)
• Nearly died of exhaustion

I didn't even do anything all day! I was just so tired on the way home that I couldn't even move my arms. I had to psyche myself up into answering the phone, and I had spent the day literally sitting down.

Slightly worried about this and really it's quite frustrating. I just don't understand it as this tumour has been there for years, it can't be making me tired. The drugs have come down in dose now and realistically are not wasting my muscles away - they're bloody steroids for gods sake. And mentally? I just don't get that mentally trying to process big news can make me actually weak.

On the plus side though, my legs are quite thin. Shame I can't actually walk on them and show people.

Today we have a bit of a day planned and I think I might have been a bit over ambitious. Drinking tonight in Camden is looking unlikely after all. I wanted to do it for a few reasons, to make an appearance and say happy birthday, get the hideous hair situation out in the open, be a bit normal, achieve a mission and therefore feel better. (Notice I put all the selfish reasons at the end, should probably read that list backwards).

Anyway the point is I've kind of been working up to it and hoping it would be a watershed but after yesterday I am ready to abandon plans and that would be a shame. I need to make sure that it doesn't get me down though as that would be rubbish. I do feel like I have improved so much mentally and am way more positive, I don't want an aborted mission to set me back again.

Come on body - buck it up a bit!

Total grump fest.

Well. I suppose it was due, but I just had a major grump. Having been looked after hand and foot by my mum while she studies full time for an MA and generally cleans, cooks, washes, shops, feeds and motivates me, I just totally grumped out at her and managed to simultaneously be incredibly selfish and nauseatingly victimised. Sheesh, I really wish I was a bit more grown up. I've apologised now and of course she said it's fine, I'm allowed to be grumpy but really, I would have hoped to be above this.

I reached my line though which was good. I knew I was taking it too far and using a brain tumour and exhaustion as an excuse to act like a toddler. At least I realised it and managed to stop. Hopefully I won't do it again. (I'm totally going to do it again, I can tell).

My changing relationships.

Something I've been thinking about for a while is how this is changing my relationships with people. I suppose at a deeper level it's about how I am dealing with things differently and how the change in my outlook is affecting the way I interact with people. It's quite interesting.

Mostly it's people that I don't know particularly well. I know them, we get on and like each other but we don't know each other. I guess. Does that make sense?

Stepping back a moment, I wonder if I have become more serious. I don't think I have, I think it's just I can't be as bothered anymore to always do the polite thing and say the right thing at the right time and basically stick to any basic social norm. (Trying not to be grumpy is something that I have to work on A LOT in social situations, so the net effect may well be me appearing more grumpy). It's not like I think I don't have to anymore because I have a brain tumour, it's more like I just can't be bothered. Maybe the lack of energy hasn't helped too.

The upshot then is that I am cutting to the chase more, I am not really doing much small talk and I'm being more direct with people. I have noticed I am asking people more questions that I perhaps would not have thought appropriate before, and I am being more interested in the real things rather than the mundane and small talk. This is a good thing. It has accelerated a few of my relationships already I think, in a very good way - it's like we have been able to skip a stage. I suppose if anything, this does throw up more serious things to think about than the weather.

I wonder if it will just be a short term thing?

Also, something I wrote earlier struck me about this. Although I have such a fantastic group of people supporting me, I still can't really shake this feeling that I'm outside, parallel, on my own. It feels like I have to step up and grow up and basically just deal with it and it's like it has actually given me confidence. I know that I'll do this on my own and I know that I'll be fine, but I suppose really it has illustrated to me that I can do it, and I am strong enough - when maybe I wasn't really aware of that before. And that that growth in personal confidence is subsequently allowing me to be more confident in interacting with other people, who maybe I was a little intimidated of before.

Who bloody knows. I'm not sure all this self contemplation is a good idea actually there's a fine line! So self indulgent!

Bye bye hair.

I did it. It's gone.

Currently wearing a big woolly hat as it's really very cold with no hair. In the end it was pretty easy, I sat in a chair and read Marie Claire (what a pile of shite, literally the first 120 pages were adverts - who would pay to put an advert in a list of 100 adverts in a magazine?) while a nice girl cut all my hair off. She didn't try and talk bollox to me and she was very nice and I couldn't really muster up too much enthusiasm so she just got on with it.

I just pretended that I was on America's Next Top Model at the end and I didn't want to disappoint Tyra after makeover week, that seemed to do the trick. It's ok, I can make it messy and I can put a scarf over it. It really isn't that bad, but it is going to take a reeeeeally long time to grow back.

The thing I'm not looking forward to is everyone telling me how great it looks. It really suits me! I have good features for short hair. Maybe I'll decide keep it like this? I look great with short hair! YOU HAVE TO BLOODY SAY THAT because I have a brain tumour and I don't have a choice but to have short hair. The only way I will truly know if someone is telling me the truth is if they say it looks terrible.

So I'm getting ready to just smile at all comments and say thanks. That's all I can do, but be sure to know that my teeth will be gritted against every compliment, as I will never know whether it is for real.

I wish it was just invisible and not a thing.

Contemplating surgery.

I have been forcing myself to think more about surgery because it's frankly just a bit weird that I'm not worried about it. It's like I have this ability to just cut it out of my thoughts and although I know it's going to happen, it just doesn't seem like it's going to happen. I can totally ignore it. I don't think this is very healthy as it all needs to be processed at some point and I don't want a big crash just before I go in.

So I've been forcing myself to actually think what it might be like. Not too pleasant really.

It's been easy to fixate on my cutting of hair, and calling the carpenter and such things, why is it so hard to be honest with myself about being terrified?

Mostly what I'm worried about is the moment they wheel me away and from then on I'm on my own. Even thinking about that makes me feel alone, right next to Olly, he's just there - but I'm on my own in this and there's just no choice, I have to do this - on my own. It kind of makes me hyperventilate a bit just thinking about that no going back moment. I remember it from my nose operation but I think this will be worse. Trying so hard to be fine, and not hysterical and a nuisance patient but at the same time being so utterly alone. I don't really want to have to do that.

That's one bit - the before. Mum says I can ask for drugs to help me sleep the night before in hospital so hopefully that will be great. Not sure I'd sleep at all otherwise. And then I won't know anything about it - I'll be totally unconscious and blissfully unaware of anything going on in my head. The others will have a terrible day stalking corridors and trying to occupy themselves. I really don't envy them that but I am a bit relieved that I'll not be aware of anything until I wake up.

And then there's the waking up. What the HELL is that going to be like? Well firstly - it's going to hurt right? You can't really have someone cut open your scalp, saw into your skull, take a lump out (easily or with some difficulty), screw it and sow it all back up and have it "not really hurt". I really am not good with pain, so I think this is my major source of denial. I just can't understand what it will feel like and it's the whole unknown thing that is getting to me I think. Yes, it will hurt - but will it be tolerable? And what will the side effects be? And how long will they last?

What if I can't speak, or see, or move my arm and leg? What if I can't get to the toilet? What if it's so bad I have to stay in hospital for ages? I know - I KNOW - this is all really unlikely, but it is a possibility that I should contemplate. And not knowing how it will be is really the problem. I just can't prepare myself for something that is so up in the air. The only thing I can do is have the operation and see what happens. This is a whole new way of life for me - "see what happens". 

Gahh, anyway, I am starting to think about it and although it brings me out in a panic each time I do, I think it's good to try and get my head round it. Now I have a date, and a list, and a bit more strength I think it's definitely time to start dealing with it.


*Little clarification, I haven't had a nose job! Had to have my nose put back in the middle of my face after a rounders incident when I was 10. About a half hour operation but with a general anaesthetic it's my only source of experience for this. Mostly I was traumatised about the length of the gown they made me wear to theatre, they only had baby ones left which didn't quite reach my waist. And they're backless. And you're not allowed to wear pants. This was very disturbing and I clearly haven't quite got over it yet.

I've made a list.

That's all it needed, a decision and a list. I couldn't sleep again last night as I have been contemplating surgery a bit more - I'm going to write about that separately - but the upshot is that I made a few decisions and that has helped me feel better.

Firstly, I have decided to cut my hair today. I have found pictures that are acceptable. Acceptable. And I have a list of hairdressers to call today to make an appointment. Just a decision in itself has given me something to do today, like a plan. Then I got up this morning and made a list on my work pad. It's great it has like 12 things on it.

So I have a bit of a busy day today and I'm feeling so much stronger and just ready to get on with it. The time has come to start again, I don't think I was wallowing as such, maybe just getting used to things and the new pace my life is taking right now. But I need to be self sufficient and not hanging around all day waiting for mum and Olly to come home. I don't want to be totally dependent on other people's plans, I have to have my own.

Also, yesterday I ordered clothes from Marks and Sparks and they're being delivered today. The impact of new clothes cannot be underestimated. This may even call for a shower (even though I have the best pyjamas on the planet and it's quite hard convincing myself to wear anything else).