Wednesday, October 31, 2012

Driving licence: surrendered.

It's gone. There was an almost comedy moment as I let it go in the postbox when I didn't want to. But I can't drive anyway, I just don't have the concentration.

Feel a bit sad though, I like driving.

Jenkenstein. On Jenowe'en

If only there was a fancy dress opportunity for someone with a whopping great scar across the top of their recently shaven head to walk around scaring people... I'm thinking of trick or treating tonight on the way back from the surgery - brand new scar exposed. I could make a killing.

I'm actually quite worried about seeing the scar. It was in most of my dozing dreams last night. Yesterday I kept looking things up on Google to do with staple removal and scars, then closing the window before they had chance to load. (That's possible when you have such a rubbish internet connection that it's comparable to the dial up from a remote village in Southern India).

I definitely wasn't ready to see it before now, but some intrigue has crept in as well. But mostly I'm just worried that it will be not healed, and a mess. Maybe I'm just squeamish. It will be nice to get the plasters off and be able to see the shape of my head again. But what will the scar look like?

Think I'll be thinking about it most of today.

Symmetry of time.

I went on a course once about personality types, and was identified as a type of person who remembered dates. I've been thinking about dates a lot recently, and the weird symmetry of time.

It was a year ago yesterday that Oliver and I decided to get married, over Sunday lunch. It was such a good decision, and Oliver was on Jen-sitting duty yesterday, that I think that set me off thinking about the year we've had. It's been a great one, 2012. We've done some brilliant stuff and this is just a weird part of that.

It was a year ago today that I started my new job at Pearson. I feel quite bad about the fact I hadn't yet been there a year when this all kicked off, and they've looked after me so well. But it is a marker of the passage of time.

And then there's the whole tumour business. It was the 1st October when we went to see the GP (I remember asking Olly to send a pinch and a punch email to Tristan as I knew he was away and would forget. It made me laugh through the pain). Before then, we had no reason to believe this was anything more than a bout of migraines, it was less than a month ago.

Today is the 31st of October, I am taking the last of my drugs today and having the stitches removed from my head. It will all be over by 6:15pm tonight.

October 2012: tumour month.

Tuesday, October 30, 2012

On about hair again.

For all I went on about my hair when I had to get it cut, I don't mind it now. It's growing on me (boom boom).

I feel more comfortable with it all shaved off than in some fashion style that didn't feel like me. And although it's still a bit of a shock to catch sight of my almighty cheeks in the mirror at first, it doesn't feel  that weird. In fact it's weird how unweird it feels.

It's cold though, I can detect the direction of air flow by moving my head. And it feels like velcro, getting hats on is a right palaver as the material just sticks to my head. And I've got to be careful of touching the plaster as there is still such a risk of infection.

At the moment the plaster gives a little clue as to why I have a shaved head, and soon the scar will be visible... eek. But as soon as it starts to grow back a bit it may look as if I've chosen to shave it off, I wonder if my feelings will then change.

In the meantime it's a relief. And liberating. And really quite cold. But I like it!

Monday, October 29, 2012

Good days.

Someone told me I should chalk up every good day as a good day at the end of it, as a good day was a good day. They told me it more succinctly than that but I like it.

The thing is every day has been a good day so far. I can really see my progress - the noises in my head are far less frequent today and it feels like my head is much more aligned. I got some proper sleep last night for the first time in ages, and have had a lovely day with my dad, which I never would normally get to do.

Today has been different though as I've been so exhausted. It's the first time I've felt unable to get off the sofa, and I've pretty much been sleeping the whole day. I think it may be to do with the new feeling that my head is healing and I can relax a bit more when I put it on a pillow. I can actually let go enough to sleep. And I feel much better for it.

If I keep progressing like this physically I'm confident I can get my strength back in no time. There is some weakness in my right arm but it comes and goes. It happens mainly in the mornings and makes wielding cutlery difficult. I have my rehab in the form of a knitting nancy - it really works! And typing too, which I am doing a lot of.

The thing I need to work on is my concentration. If there are two noise sources in the room I can't focus and my brain gets jammed. Sometimes my brain jams itself and I just can't take in new information. And I lose words, which is disconcerting. 

It's early days but this is something that I need to get back. 

But a good day is a good day. And this has been another one.

Staples and scars and a sweepstake.

I made an appointment this morning at the doctors surgery to take the staples out of my head. It's on Wednesday and suddenly that doesn't seem very far away.

I realised that I have been kept quite sheltered from the goo and mess of surgery. When I woke up I was clean, and apart from bruises on my wrists from the cannulas, there is no sign to me of the carnage that must have gone on. There was the drain... but thankfully that's now gone.

The scar is currently covered by a series of plasters, which look quite neat and tidy. I made the mistake of looking at some scars on the tinterweb before going into hospital and scared myself silly by the frankenstein nature of them. I have never thought of myself as the squeamish type before this but suddenly when it's your own head it seems different.

I'm not worried about the scarring long term, just how it looks while it's still healing. There must have been lots of blood and goo - what if it is all still stuck there when they take the plasters off? And will it hurt? Jeez I am such a wimp with pain anticipation.

So - to the important bit. I'm holding a sweepstake for how many staples are in my head. Would you like to participate? Strictly speaking it isn't a sweepstake as you don't win anything. But you get to have a happy glow that you helped distract me from the thought of staples being pulled out of my scalp.

This morning before college mum stood on a kitchen chair and took a photo of the plasters on my head, for you to study, with interest. This must have been a good photo opportunity in itself. See below:

Place your bets... NOW! Either leave them in the comments or contact me direct and if enough people reply to make it interesting then I'll put up a table. It may become more of a voting thing, I haven't really thought this through.

Update: see entries so far here -

Sunday, October 28, 2012

The after effects.

I talked a lot before surgery about my fear of pain, and everyone kept telling me that it wouldn't hurt so much but I didn't dare believe them. In my book it's better to manage my expectations down so everything's a bonus.

But it really hasn't been that bad. During recovery and the first night the nurses carry out obs every two hours, and part of this is asking for pain levels out of 10. From the beginning I found it hard to gauge the pain in my head - it was strange and transient. Was it surface pain from the wound, or deeper pain from the depths of my brain...? (I know that there aren't any pain receptors inside the skull so this isn't possible but it felt like it sometimes).

I was wary of pain, so I took all the pain relief on offer, and that worked.

But I was aware I was masking the problem. I wouldn't get a handle on how painful it was until I turned down the painkillers. That was a scary thought. Turns out it's absolutely fine, since I've been home I've taken two paracetamol by way of painkillers and that didn't even do anything. I have weird pain in my scalp as you'd expect from any cut, but it isn't that bad and comes and goes. It's actually starting to itch now more than anything. It's comforting to know that I have a big bag of codeine at the ready should I need it.

The more interesting after effects are the sensation of movement and imbalance inside my head. It's hard to describe but everything feels very lopsided. It isn't constant and every now and then something shifts in a very disconcerting way and I have to wait for my head to reacclimatise. Sometimes is doesn't.

And laughing really is weird. It's nice to notice how often you really laugh, although frustrating when you can't let yourself. I feel lucky to be laughing so much at a time like this! When I laugh my scalp moves in such a way that I think it's going to get stuck in the wrong position. I guess it's the scar pulling, and will get better soon. Stitches are due out on Wednesday so hopefully it will be healed enough by then.

Today my head has in general felt a bit more stable, and centrally balanced. I suppose it's got a big change to get used to  - there is a space in my head where there wasn't one before and a loose bit of skull that needs to knit back together on one side, so it's no wonder that it feels a bit lopsided. It's amazing I am walking around at all, let alone feeling as strong as I do.

I'm still waiting for the new found amazing skill, that I was convinced I would acquire through head trauma, to show itself. It isn't a language, I've checked. It could be eating judging by the amount I've put away in the last two days, although strictly speaking that wouldn't be new found. Hmm wonder what it could be...

Did that just happen?

Something that keeps fleetingly occurring to me is the sheer enormity of it. Then it goes again.

It first happened the night before surgery, in hospital, like I got a glimpse of the situation from another point of view. Then it was gone again.

After, it kept surfacing again but I put it down to the morphine. The horror of what just happened... have I just had something pulled out if my brain? Did they really just open my head?

In the shower in hospital I had a moment. I wept with relief. I'd survived. I'd just managed to balance on one foot while washing the other and that's always taxing, but it seemed ridiculous to be showering, and balancing on one leg, when I hadn't been sure I was going to be able to move said leg at all. 

It was a happy moment, but ridiculous too. I had to hold on to the wall and weep. And then laugh. I'd survived.

I think it will take a bit of time for the enormity of what's happened to sink in. It's ok to write about how you're processing experiences, but it doesn't mean you're actually processing them. Argh.

Surreal still, I guess.

Saturday, October 27, 2012

Not a good night for a car alarm.

After the excitement of being set free, I wasn't sure how I would feel.

Physically, I'd kind of got used to the tight feeling of the bandages (although I couldn't feel my ears), so when they came off, my head felt loose - like lopsided. It moves when I laugh, I'm not sure which part of it moves, but it definitely moves. And when I raise my eyebrows. And it feels heavier on the right.

I guess it will take some getting used to and it will start to knit back together soon. But mentally I also wasn't sure how I'd feel.

It was amazing to get home and see Neville and be among my things again. Mum had made the house really nice and washed everything that I might even think about using for sterility. It was incredible. Beka came over and we had a lovely evening just reeling in wonder. What a month! Then I went to bed. My first night without the bandage, how would that feel?

Turns out pretty weird. I can feel pulsing in my head, I'm convinced you could see it if you look hard enough, but lying down made the bone creak. It wasn't unpleasant unless combined with the pulsing - which made it... rhythmic...

In hospital I don't think I dreamt. As we went to bed I was extra cautious with my head placement (to minimise rhythmic creaking) and surprisingly dropped off easy enough. Only to wake up at half past two - in hysterics.

There was a car alarm going off outside that I had been dreaming was an alarm in theatre. I don't have specific recall of the dream but it was clear that something had gone wrong and it was to do with my head. Poor Olly. It's been years since I had a nightmare.

It's good to be home :)

That was quick!

There I was sitting on my bed with my legs crossed when my support nurse appeared and proclaimed "you're going home!". Behind him lurked a nurse who whipped off my head bandage while I reeled in terror at the thought of my skull coming apart (it didn't), they threw a bag of drugs on the bed and stood there, hands on hips, grinning. What was I waiting for?


So let me recap the past few days. It's a shame I wasn't strong enough to capture the thoughts down as I was going through them but I'll try to give an open overview as possible. This may read like a list but I think it's important to try and remember everything.

After being told I was first on the list at 2am on Wednesday morning, I felt relief. That the waiting was nearly over. In the morning I was showered and gowned and ready when mum and Olly turned up and we sat and waited. They came for me about 9am, all the nurses said goodbye and good luck and it was all I could do to smile.

But first I had to have a quick CT scan... while I was waiting in the corridor my surgeon told us there were some operational delays in theatre so to take me back to the ward, my heart sank. Then a VERY poorly man was wheeled out the scanner in front of me and I wondered if that was what I would look like, after...

Back on the ward there was a chatty woman next to me which I didn't appreciate. I'm afraid I was quite rude, demanding that my curtains were pulled in her face. In her face. The dye they give you during a CT scan made me feel weird (more weird than waiting for brain surgery?) and I started to get anxious. I just wanted to get the waiting over. But I didn't want to go through with it. I wasn't feeling very brave.

Finally they came back, and in the lift I started to get hyperventilatey, Olly held my hand and we just looked at each other. This was it.

They wheeled me into a waiting area and put a screen up with fish on it. Earlier I had been explaining to the lovely nurse that was with me how my three year old niece thought I had a brain tuna. This seemed very appropriate and we laughed, then suddenly I was crying. Dammit. I didn't want to cry now. But it was over soon and I held it together. It was only because she was nice to me.

Then I was in the theatre. I tried not to look at the equipment too much and to focus on the anaesthetic going in. It seemed to take forever and they were sorting through paperwork while putting cannulas in... I got the impression there was some hold up and I'd dozed off.

Then when I came around I was still expecting them to be fiddling about with it. But there was my surgeon and they'd done it! I was so surprised! And relieved, it was over... and I'd survived!

It's hard to remember what happened in the recovery ward although I definitely have a vision of my surgeon bounding around telling me that it went really well, and more importantly he managed to shave my entire head except for a tuft the he could't get to because of a clamp. I remember thinking that was the last thing I cared about but it was funny and sweet that he'd taken my request so seriously to shave as much off as possible. He was clearly buzzing after surgery.

I wasn't in recovery very long and they were pleased with my progress. So about 5pm I was wheeled back to the ward. I could hear mum in the corridor and suddenly there they were in the lift. Olly! And mum! I don't know what we did, it was all a bit too much.

I slept a lot for the rest of the day, I don't remember much until someone reminds me - so it's in there but  not at the surface. I forgot Flora was there until the woman in the next bed asked me yesterday if that was my nephew (haha takes after me) who visited. Then I remembered her being there, very strange.

That night I was in and out of what felt like consciousness. Olly stayed with me until 11pm although I was pretty much uncommunicative. I couldn't understand why he kept grinning at me.

In the morning I felt better. I had breakfast in the hope that I'd get stronger quicker, but it made me feel a bit nauseous. I was worried about moving. They'd given me some pain killers in the night but I was terrified of moving my head in case it hurt. If I stayed completely still I could still pretend that nobody had sawed open my skull. There was a very tight bandage on it that felt like it was totally holding my head on, but I was worried about moving.

The day shift came on and they tried to get me out of bed so they could change the sheets. As they sat me up, I caught sight of my drain (draining liquid out of my head), and that freaked me out. Some, what felt like bubbles and suction and liquid moved - inside my head - and it was very disorientating. It was very hot in the ward and I couldn't cool down. And I was still feeling nauseous from breakfast.

I felt better after I vomited and it was lucky (or unlucky for them) that mum and Olly arrived just before my performance. I decided not to try and move until I was ready, after that. The drain was due to come out later that day and I felt like I would prefer not to move until then.

The woman across from me told me to be careful catching the drain as it really hurt. Then she screamed  and wailed loudly when hers was taken out, so although I was looking forward to it being taken out I was slightly apprehensive, to say the least. In the end it wasn't that bad. And a relief to be free of it. They removed the remaining cannulas and I was promised that I could have the catheter removed on Friday morning.

(For the record, the catheter wasn't that bad - a bit uncomfortable when you catch it but worth it to not have to get out of bed for the toilet. And removal was fine too. Don't know what I was worried about.)

By the end of Thursday I was feeling really strong. Mum and Olly brought me in some food and I felt stronger still after that. I was desperate to have a wash and get in my own pyjamas but I still had the catheter in. I vowed to be up and about in the morning. That night I think the anaesthetic finally wore off and I stopped falling inexplicably asleep at the drop of a hat. I spent the night dozing and was awake from three, impatient to get the catheter out and in the shower. I was convinced I could do it.

The nurse took it out at 7 (I was clock watching!) and I had a weetabick for breakfast - I was in bed 1 so they came to me first, I didn't realise how much currency Weetabix has in the Murray Falconer ward. As I waited for the codeine to kick in I got a visit from the Occupational Health team. They said they'd come back in half an hour and we'd go for a walk... I started to psyche myself up.

The day shift came on then and wanted to change my sheets, I thought this would be a good opportunity to get out of bed. They said to take my time but I was surprised how easy it was - I was stronger than when I went in! But I was moving my head carefully and staying very upright.

This gave me confidence for when the Occupational Health team came back. We walked down the corridor and up two flights of stairs, down again, around the ward and back. They were very pleased and said as far as they were concerned I could go home today. Hurray!

The ward round doctors had said I could go home Saturday or Sunday so I wasn't getting my hopes up - but I resolved to impress them with my mobility, just in case. And went for a shower. Oh what a relief to get into my own pyjamas, and feel clean again. It was like coming back to life. I knew when I put the gown on that it would be a marker to get back into my own clothes, but it felt better than I was expecting.

All day, I kept sauntering up and down the corridor asking for bed pans - they were measuring my output as you can't go home until they are happy you are passing enough - showing off. When I put my mind to it it turns out I have an unrivalled capacity for water drinking.

Then my support nurse turned up and was really impressed. I told him about the possibility of going home today and he went to ask the surgeons. What service.

So here I am. At home. It's so good to be home. It's funny how well I feel, I've been eating well and getting my strength up, but I'm hyper aware of my head position at all times. It feels weird to be so well recovered already.

When I came out of hospital last time I had a bit of a euphoric period followed by a down period so I'm just playing it by ear. But for now, wow, who'd have thought I'd be home literally 48 hours after being returned to the ward after brain surgery?

Wednesday, October 24, 2012

Morning has arrived.

I slept absolutely fine, was woken just before two for my obs which weren't at all intrusive, and was told I'm first on the operating list which is a massive relief for me. I just want this done now, the longer the wait the more my brain thinks and I have reached about saturation point for that now.

So here we are, it's 5:30am and I'm awake. I will be thrown in the shower at 6am with some special stuff I need to use for hygiene and infection prevention, pre surgery. I've also been supplied a gown for surgery, some optional plastic pants (thoughts anyone?) and some stockings. I will look forward to changing back into pyjamas, that will feel like a nice thing to do and a bit of a milestone I think. 

While I'm showering the nurses will change my bed to ensure everything is clean as possible and then this is where I'll be until they come for me between 8am and 8:30am. Olly and mum will hopefully will have made it down to say hello. And goodbye. I feel fine now, like I'm totally ready, but I know when I see them I'll cry. I don't really want to cry as it's pointless and I don't want to cause a fuss and upset everyone else but I can't help it. Always been a cryer it's irritating. Am actually having a little cry now too, just to myself. If this was a film then it would be a good time for a little cry.

For the first time last night I felt brave, but it was still a false feeling as I don't have any choice in this. Anyone in this situation would be doing what I'm doing. But I think it was because I was properly scared last night, such a strange experience. I really don't remember a time I have been truly scared before. Maybe after this I'll be able to watch zombie films with ghosts in. I'll be like whatever - that's not scared, I'm going to get a cup of tea. Hope that happens. (I bet it doesn't though I'll be behind the sofa with a cushion whimpering at triffids).

I'm quite thirsty but obviously can't drink anything now. I am a bit nervous feeling, like before an exam or something but my overwhelming thoughts now are phew. It's nearly over. And there are no more nights to get through.

I can't post this as the magic internet has disappeared. But it is here waiting to be logged.

[Jen wrote that last night and then lost her internet connection so I'm posting it now instead - Oliver]

Tuesday, October 23, 2012

And so here we are.

This is really what I was interested in, how on earth was this going to feel? And suddenly here I am. How did I get here?

Time has been elastic. It has moved so quickly and yet it feels like it's been forever. A day lasts a week and then a week flies by in a few hours. And now here I am, in hospital, waiting for brain surgery. Life is very strange.

Have I really got a tumour in my head? It just doesn't seem possible.

Right. Well, I better try and capture some sense as well. I am feeling ok now, quietly calm. The ward is nice and the nurses lovely. I've just taken some pills to knock me out but I'll be woken soon anyway for obs, and then again a few hours later for pre-surgery shower. So I'm actually not too worried about not sleeping, there won't be time to sleep.

After all that.

I also don't feel alone, I have the internet for one thing (no idea how, or why, but it's really improved the hospital experience). And it's good to be writing. I also have Luis. Will get a photo of Luis up on the photo page at some point, he is a felt turtle from my sister, to keep me company.

Up and down then I suppose. I was definitely in a panic before, but now I'm back on track. I'm hoping I just needed to get it out the way and realise the depth of the terror, so that it would lose it's power. That may have happened or it may have just abated and is lurking around the corner. I'll find out.

Thanks for all the messages. It's been a bit overwhelming today so I've been keeping a low profile but I really appreciate the kind thoughts everyone has been sending. Thank you.

I'm going to hope the pills work now. Night night all.

All becomes clear.

I can't remember the last time I was actually scared of something. It's not like starting a new job, or worrying where the cat's run off to. I'm actually, terrified. I'm not sure I have ever even been terrified before and it's a very strange feeling.

My heart is racing and has been for quite some time. I don't seem to be able to breathe properly. I keep bursting into tears. And it's annoying that I can't stop it. I think that's the difference - usually I can talk myself out of anxiety, or nervousness, or worry pretty easily - this is unstoppable.

I'm not scared of being alone, I think that must have been an easy cop out for me yesterday. It's pretty obvious now (duh, I feel like such an idiot). I'm scared of someone drilling open my head. They're going to actually open up my head - that is just. Ridiculous.

I bloody knew it would all come out now.

I had a shower earlier and thought I'd wash what hair I have left for the last time, with nice shampoo. Half way through I suddenly realised that my head is never going to be the same again. It will be different. Scarred. Bumpy. With metal in it. How on earth had I not realised this before? I felt really bad that I haven't taken more notice of the shape of my head, as now it's too late, it will be different. Sorry head.

I'm going to have a massive scar when I wake up and bandages and a drain coming out of my head. That's a terrifying thought. I wish my heart would slow down.

A bed for the night.

Right then, the bed manager has spoken and my bed awaits. It feels a bit too real now and I've got the shakes. Luckily Neville is lying so completely across my arms as I'm typing that I can only move the end of my fingers, so I can't actually shake.

I have been busy today, bought some new pyjama bottoms and a travel toothpaste for the occasion, and have been studiously ignoring my list of important things to do. Except the council tax bill, I did that.

But the time has come. I need to have a shower and pack. And then get myself to King's. Here we go.

I wish I didn't have to.

The steroid effect.

I found out the other day that if you take a lot of steroids for a long time you can get a certain symptom. I'm totally struggling to process all the simultaneous thoughts that occur from this horrendous news (thanks, mum, for telling me).

It's bad enough in itself (in my opinion if you have voluntary or enforced short hair then it's probably best if you're as tall and channelling-the-gaunt-look, as much as possible). But if you happen to know a specific sliver of my history then you'll also understand my horror from another view. Apologies to those who don't know that history sliver.

There's a chance I'll get a... Oh god no I just can't say it. I'm just going to have to give you the words and you'll have to put them together.


And "face".

Nooooooooooooooooooooo. Really. Not funny.

I have no free will.

The trouble with deciding not to worry is I don't actually have any free will so it isn't something I can control.
[I urge you to watch this, it took me a few goes to get but completely affected me, I loved it. I had always been a spot embarrassed about my taste in music / art / culture (I am not what you might call cool) but this whole lack of free will idea made so much sense to me and took away the responsibility I felt to like what everyone else likes. It was months ago now and I'd forgotten it's impact on me until yesterday, and seems just as appropriate now. This is the second Sam Harris plug I've done but I really recommend watching it.]
Random thoughts are popping into my brain, and it's not me who puts them there. What if this is the last time I can cut up my own food. Jesus. What did you think that for, dude? Stop crying already.

It's getting tedious.

But it's ok, it'll be daylight again in a bit and everyone else will soon wake up. My melodramatic what if's should recede to manageable levels once more as I get embroiled in last minute tasks I've saved up for today, to panic over specially.
  • Pay the outstanding council tax bill. Probably should have fast tracked that one.
  • Cut nails (What if.. SHUT UP BRAIN not listening)
  • Buy dressing gown
  • Pick up latest sick note from the doctor's
  • Tidy bedroom just a little bit as its quite embarrassing and people might see it if I'm away for a while
  • Decide on music and entertainment to take in with me
  • Join library and get audiobooks out
  • Pack hospital bag
  • Practice drums
  • Go to hospital

That's what my today looks like. Might just skip to the drums, that should wake everyone up. I can blame my unsociability on lack of free will.

Monday, October 22, 2012

Thinking about going under.

I feel like I've pretty much processed everything now except for one thing: the operation itself. And the timing is good as I'm going into hospital tomorrow. Now would be a good time to get this processed.

It's simple, really. I'm very scared. I haven't gone much beyond that in my thinking so I need to work out what I'm scared of so that I can just park it. That worked really well with thinking through the possible side effects and I think it'll work here too.

I am being admitted tomorrow (Tuesday), so they can monitor me overnight and do whatever it is they need to do, but the surgery itself will be on Wednesday (hopefully - there is a chance I will get bumped last minute for an emergency. I'm ignoring this just now as it's just a variable too far).

The anticipation of the operation will be the worst, and so I'm very worried about Tuesday night in hospital.

I don't want to spend the night awake in hospital, terrified, alone, with dark scary thoughts going round my head. I will be alone, and I hate that. Visiting hours must end at some point, and then I'll be alone. I know I'll be ok, it's just I don't want to be alone. But I have to be so... I'll just have to deal with it as there isn't anything else to do. (I fully plan on demanding drugs to knock me out).

What else?

I think once I've made it through Tuesday night, Wednesday will be fine. I'm pretty sure by then I'll be like, bring it on. It'll be daylight, there'll be people there and I'll just want to get it over and done with. Not actually too worried about Wednesday. Wheel me away, give me anaesthetic and then I just do a spot of time travel.

It will be strange to wake up, will I know what's happened? Will it hurt? Will I know if Oliver's there? Will I be able to move? What will it feel like?

Can't answer any of these, and nobody can. It feels like a useless exercise even thinking about it actually. I'm just going to have to wait and see. I don't want to be in lots of pain, but I know they can give me relief and I'll still be very sleepy so I think that's probably not worth getting too worried about.

So that's it. Turns out all I'm really scared about is being alone. It seems simultaneously a bit of an anticlimax, but understandable.

Right, I'll get back to building a drumkit then, that was easy.

Budding Buddhist (for two days only).

Earlier, we talked a bit about Buddhism, which I realised I know absolutely nothing about. The interesting part for me (I still haven't read anything further so this is based on an incredibly narrow sense of Buddhism) was the notion of being just content with the current, and not creating suffering for the human mind by "wanting" something unattainable. Or uncontrollable - like the outcome of impending surgery.

I had been talking about hope, as a concept. Which I think in this context is in fact different - that it's ok to hope for the best (and most likely) outcome to an operation that you know is going to happen, but it's not ok to hope to win the lottery and then pin your future happiness on that (unlikely) event coming to pass.

Anyway, it made me realise something. I have always been a striver and a planner. There are things I want to achieve: work and life goals and measurements, fairly arbitrary it seems now, against which I would judge myself a success. And that has all gone out the window.

I feel no responsibility for my current situation. I know nothing about brain tumours and have no authority to say what is the best course of action for me now. I'm in the hands of the experts and they are telling me what to do. (And they ARE experts, they are incredible). It is comforting and easy to let that happen. Even at home I've not been well enough to care much about what I eat and when, all major decisions are being made by other people and I've totally taken a step back on being responsible for anything. For myself.

This is new, temporary, but really nice. I think I have always felt the burden of responsibility a little too keenly, and this is actually quite refreshing.

I think this is also connected to the feeling of a journey, like I'm on a conveyor belt. People say I'm brave on a daily basis, and I can see what that they mean in a funny kind of way, but I feel like a complete fraud.

I have it brilliant here, I don't see how I could have it better - and I certainly don't feel brave, I just feel... unresponsible, like a passenger, I'm not making any choices to be anything. It's just all happening, it just is. Very zen.

After surgery I am expecting this to change, and I want to definitely get back to talking responsibility for my progress. Recovery progress as well as life progress. So the Buddhism thoughts aren't likely to last, there is no chance I'll just be happy with the current - ha! But for now, it's great.


Sunday, October 21, 2012


Because I don't really know what the effects of the surgery will be, it's hard to plan anything for after. What is worrying me at the moment is how I will react to working through the side effects - as from past experience I think I could go either way, rather stubbornly. Sometimes, if I want something then I'll do it as best and as hard as I can. But equally, sometimes I have been known to just throw the towel in and give up without really fighting at all.

Especially in a competition situation. I'm a bit worried about the possibility that the exhaustion and shock from surgery could well contribute to me just not being motivated or bothered enough to work hard and focus on recovering. On returning to physical strength, whatever that may be, as well as mental strength and focus enough, to function in a work situation.

Oliver has had the BEST plan, and I'm really excited about it.

We have ordered an electronic drum kit. I LOVE drums. Whenever we go and see a band, it is usually the drummer that I am watching, it fascinates me. Forever it's a skill that I wish I had. In fact when I met Olly and he told me he was a drummer I should have told him then I was going to marry him - he had no chance.

It just seems perfect for so many reasons. It will be a brand new skill, something that I can work on on my own at home during the day, but Olly can teach me when he's around in the evenings. It will keep me occupied, and I'll be able to see my progress.

But better - it is exercise, I will be forced to use my arms and legs - both of them. Even if I don't have full strength on the right, I really think it will be something that will encourage me to try. And to improve.

Because it's electronic it shouldn't be too loud, here's hoping, so my head will be able to cope with the noise as well as the upstairs neighbours... I feel some consolation wine coming on there. But realistically I can play during the day when there's only me there anyway.

I'm so excited. It's arriving tomorrow. JAM TIME.

(Any drummers out there - please send tips for complete beginners!)

Dark surgery thoughts.

I've been wondering how much thought I should put into the possible outcomes of surgery. I do like a list, and have been thinking that if I wrote the potentials out in order of worseness, would it help to see it in black and white and allow me to contemplate what I'm worried about? So far it has been there on the fringes of my thoughts, but I haven't really explored it.

I know the bad stuff is incredibly unlikely to happen, so it's hard to not start everything with "I know this is unlikely but...". Maybe I do just need to get it out and then look at it for a while.

In a particular order, or just as they occur to me? I'm just going to start.

What could happen?
  1. I could be fine. I could wake up after surgery and have a little headache but be fine. Yes please. 
  2. I could have temporary loss of movement in my right arm and leg. Physio, recovery time, maybe a week or so and then back to normal and home. That would also be fine.
  3. Not-so-temporary loss of movement / weakness. Hmm, less fine. It's clearly not ideal but something I can work through. I'll have another arm and leg, and the capacity to learn new brain pathways (apparently) and physio and stuff.
    The main problem here is things that just don't seem too important right now, but I think will later. Like handwriting (I like my handwriting) and chopping. I love cooking, and I love chopping. I'm really good at chopping garlic finely, it's just something I have a talent for and it would be a shame not to be able to wield the knife anymore. Does seem a little unimportant though, in the big scheme of things. And playing pool (I am shit at pool unless I've had 2 and two thirds of pints of lager, for about three shots. I also haven't played pool for about three years, but I may want to again).
  4. Speech impairment. Bad, this is bad. Communication is something that I really need. I'm sure there are lots of things you can do to improve it, speech therapy and hard work, but this is something I do not want to happen. Big worry.
  5. Sight impairment. Also bad, but to be honest not as bad as the speech. I would still be able to communicate and that definitely seems more important right now.
  6. Long term damage to concentration / memory / general confusion. This would be terrible. It really would, like the communication. I'm struggling with concentration and noise at the moment, but I'm hoping that it's just the exhaustion and generally weird situation. Going forward, any memory problems would be a disaster. Or ability to multitask. Basically anything that will prevent me from doing my job, well. This is a real worry too.
  7. Locked in syndrome. I know, I've been reading too much and they told me to stop reading at the hospital but I can't help it. I do not want locked in syndrome. If I get it, please stop all medication and food immediately. I would want to check out.
  8. Anything that leaves me with a long term physical disability that would prevent me working and would ruin Oliver's life as well as my own. This is really I suppose the problem. If I lose dependence for myself, and have to rely on other people caring for me then I just can't see a positive to that right now.
    That is very sad because there are so many people who live that way and I'm sure are wonderfully coping with it, but I just can't imagine the burden. The guilt. The dead end and fruitlessness. It's ok doing doss all for now, but not being able to work ever again, I just. No. This is really the problem area. Don't want this one.
  9. Anything that leaves me with a long term mental disability - as above. Although I guess that's marginally better as I may not be aware of it as much. Selfishly.
  10. Death. To be honest, I'm not worried about this one now. If I imagine it then it's sad and I think of Beaches and have a little cry - but I'd be dead so I wouldn't care. 

Look at that, a nice round 10, who would have thought.

Basically, on reflection then, I think it boils down to independence. If I can manage to look after myself and get back to work in a capacity to excel, then I'll be happy. It could take some time and hard work - and I may not ever have quite the function I do right now - but this would definitely be a good case scenario.

If I can't look after myself and need to rely on someone else I care about giving up things to physically look after me then this will be very difficult. And if I can't function in meaningful employment that would also be incredibly bad.

Right. Well that's good to have sorted out, at least I do know now what I'll be wanting to find out when I wake up. And also an idea of what to focus on and work towards: independence, and getting back to work.

I haven't touched on what is worrying me about the surgery itself, think I'll save that for another treat. But this has actually been really helpful, and not at all as morbid as I was expecting. I'm glad I thought about it.

Saturday, October 20, 2012

To my sister.

I've tried to keep most personal details of my friends and family out of Henrietta as it doesn't seem fair to drag everyone else out in the open with me, but I think this is called for. Hope you don't mind, Smeggedd.

I just don't understand how my sister does it. She is actually superwoman.

Does anyone else in the world have a birthday book? Yes, a birthday book (I am now relying on most people NOT having a birthday book or this could backfire). Every morning my sister looks in her birthday book to make sure she won't miss any upcoming birthdays of her hundreds of friends.

That would be fine if you had literally nothing else to do (and you had a birthday book). But she does!

Typically she will have spent a good portion of the night with a teething baby, who wakes every hour. She will have got up and made breakfast and got the three year old ready for nursery. Driven her there. Come back, skyped me for a chat, cleaned the house, cooked lunch, picked the three year old back up from nursery and driven them all round to my house - where she'll promptly provide cooked food, two impeccably behaved and turned out children, look after anyone else hanging around with me and then CLEAN the HOUSE.

She'll bring me a hot water bottle on the sofa and tuck me in, she'll entertain EVERYONE while I sleep the afternoon away, oblivious.  And then I'll wake up and she's making tea, organising children and she's called the doctor for my sick note. There's potties and babies and food and general motherhood things to do, and there's all this on top. How?

So then we have tea, for everybody, its just been magicked up. She cleans the whole kitchen, changes the kids to pyjamas, has them in the car and ready to go and I've still not got off the sofa. She drives home then, and puts them to bed (not a five minute job). Maybe then she gets to see her own husband and house and get some time. But she's usually skyping me again by then so it's not likely. Finally she can go to bed and not get any sleep, because the baby is teething all night.

If that was you, would you get up and look in a birthday book?

I have the best sister in the world and it just astounds me what she can do at the best of times. But she always has the capacity to do even more for everyone else. And she always does. Here's to my sister - you're the best, thank you so much xxxx

Mum, Oliver, you would be next but I'm more scared of you so I probably won't.

Thunderbolt of panic.

Ah, and there it is.

Always expected but never anticipated, who knows where it comes from. I made a will today. I've been meaning to for absolutely years and this has just given me the motivation to finally get around to it but it does feel a bit morbid. And it's scary seeing your "last will and testament" bound on a table. Sheesh.

I think that probably didn't help.

But the panic just hit out of the blue. One minute I'm on the sofa, niece playing on the floor, really lovely day and suddenly I'm in tears, imagining I'm dead and everyone's just having to deal with it. It comes on so fast that I couldn't explain it if I wanted to and I have no idea if anyone's even noticed that I'm crying. I'm not even crying for me, it's like it's a film and it's really sad.

All the stuff I've been through and the crap and the misery and the growing up. It would be sad to die now that I'm in this awesome place and not have the opportunity to enjoy it for longer. Now I've finally got here.

I am actually thinking of my life in terms of a film. I should really stop doing that because its the chick flicks making me cry, not reality. It's your fault Kate Hudson.

Friday, October 19, 2012

An open book.

I'm normally a really private person, and find it quite hard to talk to anyone outside my close circle about how I'm really feeling. The whole idea of publishing thoughts for anyone in the world to see was so foreign to me a few weeks ago, it's strange how far I have come.

At first, I found it really helpful to write things down and create a bit of order to my thoughts and free up a bit of space in my head. But I found that I was having the same conversations with people, after I'd been writing about it. That was quite strange. I'd spend the day on my own thinking and writing, and then when I saw people I'd have this ready-made conversation that I'd been crafting all afternoon.

And then I told a few people I was doing it, because it was helpful. And then the address was squeezed out of me and I finally let go. Up until now I have always felt very exposed by writing. My only real (and very proud) writing background is an interview I did for GU on the super olympian triathlete and one of my bestest friends, Jessica Harrison. I remember being terrified handing it in and just felt very judged on writing style and journalistic integrity blah blah. Basically, I was very insecure about it.

I don't feel that now. Obviously my perspective has somewhat changed given recent events, and I've talked a bit earlier about confidence, but it just doesn't seem to matter anymore. I think that as long as I am writing this for me, and with a benefit to me, then it will work. The worry now is that I start showing off and writing bollox just to entertain people, and then it wouldn't work anymore. Have to watch out for that.

But back to the main theme, there are two points I am trying to address. One is about the being open, and how funny it feels doing that. Two, is the effect of that on people. Here, I am more concerned about the people closest to me who would then have cause to question themselves based on what I am writing. That worried me as soon as I let Henrietta out the bag.

So firstly, the privacy thing. I don't know why I've found it hard in the past to be open, and it is something that I've been working on over the years anyway. I have a very close group of friends and family who I talk to a lot, which is great. In general though I find myself in social situations being polite and aware, but not very open. I am quite shy, and I'm often happy to sit back in a group and let most social situations wash over me without contributing anything "real".

This writing seems very attention-seeking in comparison and is taking a bit of getting used to. It's funny to think that anyone can read these thoughts and make their own mind up about them. But then again, nobody has to read them either, and it comes back to the main point here - I'm writing this for me, so I can read it back in years to come and WONDER at all this stuff going through my head. It's like a live experiment really.

And so how is it affecting my closest friends and family? Well, every night when mum and Olly get home I talk at them like a machine gun while they both sit and blink at me. I tell them everything I've been thinking and writing, so they don't actually need to read the blog at all. But then they do, and that's weird because we've already discussed it and I might have changed my mind a bit by then.

But I guess it is affecting people who don't live here differently. The people who I already talk to anyway. They can now read, almost in real time, how I'm feeling from one moment to another. I know that in some cases already this has led to people wondering how they should react - are they being too much or too little? And the thing is I get irritated by things people might say sometimes, but not by the people themselves. I don't want anyone to have to worry about what they say in case I'm irritated by it.

So the question is one of balance I think. If I say I'm irritated by something, I don't want that to mean all the people close to me think "Oh God, I said that yesterday...". In that situation, I'd rather not make anyone question themselves, but I also want to be honest about what irritates me - so that I remember. I want to log it, warts and all.

Here's a good example: people REALLY like to tell me that they "just know" everything is going to be ok. Now, I logically know that you would only say this to make someone feel better and because you don't want them to be worried. It's a nice thing to say, but it drives me up the wall.

It makes me think that people think I am overreacting for worrying. And then it makes me a bit angry and defensive because, quite frankly, I am worrying. And I don't understand how them thinking it's going to be ok will stop me worrying, and then I think actually - I WANT to worry, I think it's healthy to be a bit worried. Never been one to stick my head in the sand.

But really I know people are just trying to be nice. Reading this here, right now, will be making at least ten of you go "ah fuck, that was totally me... what should I do now?"

And that is not want I want your reaction to be. So I'll end this one with a plea, to not take this too seriously. Please don't take it as a personal message to act in any way around me other than you usually would. I am aiming to balance what I say, but there's a pretty good chance some of it going to come out quite ranty, but you can bet I'll have moved on to something else after a few more contemplative hours.

Told you so.

This is a weird thing that just is.

I've been getting migraines for years, had my first one at 24 working in Nottingham and I just suddenly couldn't see, it was terrifying. Then I had to lie in a room for three days without the light on trying not to vomit - what is this hell? I couldn't understand what was happening to me.

I hate migraines, they are invisible and almighty. There is just no arguing with the nausea and pain and when it's there it feels like it will never go away. In a migraine I just can't imagine a world where I don't have that pain.

During these episodes over the years I have been known to be melodramatic. Every time, I convince myself there is something really wrong. Something is causing this horrendous head pain and it must be really wrong. There's only one thing it could be - I've got a brain tumour.

I've been saying that for years. I say it to Olly during every migraine and then we both go "naaah don't be ridiculous". I said it to the consultants and clinics I've been to. I've moaned at my family. I think I've even said it to work people.

I don't think I ever really believed it, but during the dark migrainous hours of seemingly endless and unstoppable pain, it has felt like the most obvious thing.

But of course I didn't really believe it (too easy to say that now).

When we were waiting in A&E on that Monday two weeks ago me and Olly talked about the first brain scan. I said I was well pleased. I would finally have categoric and visible proof that I don't have a brain tumour - oh how we laughed.

In the back of my mind there was a little gap though... unless...

Bloody told you so!

Normal, versus normal.

This is probably a bit of a reaction to so many messages yesterday, but it's struck me how weirdly normal the whole thing is.

Everything happened so quickly and we were pretty much drip fed all this information that added up to the eventual reality of waiting for surgery, that the whole daunting truth was never a massive bombshell. It's like I just incrementally understood where we were. And what was going to happen.

And here we are, it just is what is it. It seems so weirdly normal.

I remember when first out of hospital, saying to mum (who to be fair actually was looking quite shell shocked) isn't it a bit surreal that I've got a brain tumour? And she said yes, how did this happen?
But then we both remarked on how, even though surreal it wasn't weird, it felt normal.

That feeling has always been there and yesterday with so many people finding out all at once, the reality of the shock for all of you has shown quite a contrast to my own state of mind. I think it's a good
thing and that I'm adjusting well. I had been worried it was denial but I think now that I really have started to process it. Getting there anyway.

Thursday, October 18, 2012


Well. What a day.

I was a bit nervous this morning knowing that I was going to tell you all about everything today, but was hoping that once it was out in the open I would feel better. And I do, it's a massive relief.

It's been really emotional and I haven't yet got back to any of the messages you've all been sending, but thank you SO much. It means a lot and they are all lovely. Once I'd posted, I just shut the computer for a while and twiddled my thumbs. I'm not very good at twiddling my thumbs though so then I just watched the messages come in and cried.

Totally took it out of me. I'm exhausted. Just wanted to say thanks, for now.

The mystery hat.

This morning I got the most amazing delivery from the postman, it's a GORGEOUS turquoise hat with a massive orange bobble, I am wearing it right now.

There was no note, and no indication of who it was from - anyone going to own up? I have called the site who sent it and they can't tell me who it was. Someone, somewhere, is owed a massive thank you from me... please tell me who you are!

And thank you so much I absolutely love it. This is definitely coming to hospital with me.

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.

Wednesday, October 17, 2012

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

Tuesday, October 16, 2012

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.

Monday, October 15, 2012

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.

  • 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.