‘Buzz’ off

I found myself apologising recently (it happens often). But then I had to go back and think on why I was apologising. Had I done something wrong? Nope. Had I offended someone with my oft-ill thought out views? Nu’uh.

So why was I saying sorry?

I was defending the fact I have really short hair.


I was trying to explain to a lady that I am a femme lesbian – I like long hair, paint my nails and wear makeup. I own dresses and am learning how to dress for curves. (Turns out miniskirts are not the way to go when your thighs are the size of most women’s waists…why did nobody tell me this?). But she was insistent on the hair issue – if I was femme, why do I have a buzz cut?

I tried to explain that it all fell out because of medication. But then it became some kind of confessional – I don’t want potential dates to necessarily know I’ve been ill. They don’t need to know that straight off the bat, and when they do there is often the reaction of  ‘Oh. Well… so anyway yeah when I was on this date last week…’ and they slip through my fingers.

I’m not ashamed of being ill. But I don’t see why it should define me. If I want to go out and have a bit of fun, why should I be paranoid about revealing the heavy doses of chemo I’ve been facing? People don’t know how to deal with it, and it becomes awkward. Either they ask lots and lots of questions, turning a potential date into a research session, or they can’t deal with it, make their excuses and leave.

Hello? There’s more to me than chemo, you know.

You be trippin’…no, really.

I kept hold of this one until I found it funny. At the time, it was mortifying, but now I see the funny side…

So, something they don’t tell you about some chemo drugs is that they can have an effect on your brain. In other words, you be trippin’ balls. It doesn’t always happen, and you might not even notice it if it’s a slight distortion of reality – maybe you think you see a shadow from the corner of your eye or something – but sometimes it’s just unavoidable.

The only time this really affected me was on what seemed to be a benign trip to the supermarket. Suddenly, the numbers on the price tags got all jumbled. Then they peeled off the shelf, which preceded to also melt in front of my eyes. Moving to the next aisle, because the sight of liquefying bacon was disturbing me, I realised the entire shop was melting into a river below my feet. Price tags floated by, eggs bobbed along, and I was going to drown.

So I reached for the paddle in front of me. I was standing on a small raft – as you do – and realised I needed to punt to safety. Faces came at me, like three dimensional Dali paintings, and I heard voices. I realised these were people who would also drown if they didn’t come aboard. So I tried to help them. When they didn’t want to come on board, I left them and continued to paddle.

The world eventually solidified again.

I had been punting down the bread aisle with a French loaf. Apparently, it is Not OK to punt your tripping raft down a supermarket aisle with an oversized baguette. What a waste of 80p; I couldn’t even eat the loaf they made me buy, as my attempts at steering to safety had made the loaf mere crumbs.

I only wish I could see the CCTV of these poor supermarket workers trying to ask if I was OK and telling me to put the bread down. I lucked out with the GP surgery being directly opposite the supermarket and someone having the sense to go and grab a doctor – who happened to be the same doctor who has been seeing me regularly because of said medication. The doctor confirmed I wasn’t tripping on anything illegal and I was let free (after purchasing useless bread and the imposing of an unspoken ban on my return for fear of creating a reputation for the supermarket being a crazy magnet).

Next time, I might just take some ecstasy and keep the same doc on speed dial (oh look, unintended pun right there. Gotta love those) to bail me out of my wired trips on the same excuse…yeah….

Kids: Don’t do chemo. It messes with your head.

Getting there

Time for a serious post (yes, I do have it in me). No stories of Tomb Raider fascinations, no props to other bloggers talking about equal marriage.

I’ve been having a bit of a think lately. It hurt, but I pushed through. Sometimes it happens when you face your own mortality, and while through everything I have tried (and I hope mostly succeeded) to remain upbeat, the thoughts can drown out the positive vibes. As I sit here, in bed in a freezing room in London on a bitter February night, struggling to not throw up because the chemo is getting the better of me, I wonder about it all.

More accurately, I wonder about all those people who don’t have someone with them at times like this. I don’t, but that’s because I choose to. I don’t want my loved ones to see me frail, unable to keep food down, too tired to sleep and too bone achingly exhausted to turn over. I can’t even type: this is being written courtesy of the amazing Dragon Naturally Speaking, perfect so my hands don’t hurt any more than they need to. During the daytimes, when I do venture out the house, I am all smiles. There is no point in feeling sorry for myself, because as far as I’m concerned, I will get better, and there’s no point troubling anyone else with these ideas. Of course it’s difficult. Of course the chemo turns my insides into a mangey excuse for a stomach – they should market it as the new chemical peel, sure it’d get rid of wrinkles pretty quickly (and everything else besides. Who needs a nose/eyes/lips/cheeks – skeletal chic will be on the menu, you’ll see…)

I’m lucky enough to have started with a chunky enough frame to not look like a skeleton. But I am buying new clothes with the money I don’t have just to have trousers that stay up without the sumo-hitch every five minutes. I’ve even resorted to wearing braces instead of a belt. People who see me every now and then comment on how well I look – what they mean is I’m finally looking about the right weight for my height. These are the people who think my buzz cut is a style choice. Turns out, half the people in my old office thought the bald look was a style statement – apparently I can pull it off, which is no mean feat.

There are the well intentioned comments, the pitying head-tilts, the eyes darting anywhere but your face when they realise you really aren’t too well. People don’t know how to deal with this, but here’s the thing: neither do I.

I don’t know what to tell people when they ask me how I am. The truth often gets a short reply of ‘Oh….’ because nobody knows what to say. A lie feels morally wrong. The best response is ‘Getting there’. Some days, this is true. Some days, I want to grab them by the collar and shout in their face: does this look OK? Do I look healthy to you? Should my eyes be red, my teeth be yellow? Should my hair be patchy? Do I look like I can stay awake through this social engagement? Can I really get drunk with the rest of you instead of being despairingly tee total? Do you really think I might be able to get over this?

Lucky for them, I don’t do this.

Lucky for me, I don’t do this.

So for anyone who wants to know how I am – and how I guess most people going through chemotherapy might feel from time to time – here you are:

I feel terrible. I want my social life back. I don’t want the majority of my exchanges with human beings to be with the (amazing) Macmillan nurses. I want my most intimate moments to be with someone I at least fancy, if not love, and not with the sixth doctor of the month. I want to be able to eat the food I love without fearing I’ll taste it again when it comes back up. I wish I could have a machine which drew all of my pain out of me and stored it in a little box – even if I had to endure some of that stored pain bit by bit over a long time, that would be preferable to this constant, nagging bone ache that makes you feel hollow and solid all at the same time. I want to be able to sleep the night through. I want to be able to sleep without waking up in soaking sheets from night sweats. I want peace.

I want peace.

The more I think about it, the less I think peace will come. If I get better, sorry – when, I’ll be itching to get out and do the things I always wanted. Go travelling. Publish books. Learn archery. Learn Mandarin (OK this can be done now but have you tried concentrating with a 3-day migraine?). Take a yacht around the Caribbean islands. Move to a country cottage. Get a dog.

If I don’t, the only way peace will come will be when I die. And I don’t want that to be the next time I experience peace. I don’t want all this treatment to be for a painless death. I want all this treatment to mean something. I want to know that I feel like shit because there is something waiting for me afterwards, in this life. In the life I know exists. In the life I can see happening around me. I can hear it even now, the main road under my bedroom window. The window shakes every time a bus goes past. I can hear a toddler chattering away to her mum. I can hear a dog’s claws clacking on the pavement. This is life. I can see this happening and I want even these simple things to be mine. Without fear of pain, without my tendency to faint being an issue.

So many things that I want. And I will have them. Just, not yet.

I ain’t afraid of no ghosts.

At 25, I’m young to be on chemo, but I guess that’s just life. It can be tough, but there’s never a point in feeling sorry for yourself – at 25, I’m lucky enough that the rest of me is fit enough to cope with the treatment, unlike many I see on my regular hospital trips.

The most difficult bit, for me, is what comes after treatments. Right now, I’m neutrapenic – this is when, a few weeks after treatment, your immune system just goes ‘Nope’ and a minor sniffle can become a major chest infection. Then there’s the night sweats, the insomnia, nausea, etc.

But never fear. As I lie in bed, right next to an open window, in Britain, in January, to keep the temperature down, I have something to keep me company: Ghost Adventures.

I know, right?

So here’s the thing. I have a big confession to make: I believe in ghosts. Goodness me, that was harder than coming out. But it’s true, I believe.

I wasn’t always a believer, then something happened which my sceptical mind could not debunk in any way. Then more things happened, on an increasingly regular basis. I genuinely thought if I told anyone, I’d be locked in a loony bin. A friend, who is also a believer, told me to watch Ghost Adventures. And I’m addicted. As I watch, my inner sceptic tries to debunk it as an entertainment show. But the work of Zak, Nick and Aaron is less entertainment, and more proof that – if they aren’t real – I’m not the only crazy person.

So what’s the connection between chemo and Ghost Adventures? Well, I started watching when I was on treatment. Going through this kind of thing inevitably makes you question your mortality etc, and your faith. I’ve never been a church-goer, but freely admit to at least hoping for a deity, mainly because the idea of such gives me comfort through harder times.

Again, what about Ghost Adventures?

Well, knowing that maybe, somehow, there is something after, it makes me not scared. Don’t get me wrong, I ain’t going nowhere for a loooonnngg time, but it’s good to know that there’s a possibility of something else.

Maybe that’s a selfish thing. Maybe the hope that I can stick around to haunt my friends and drive them nuts tell them they are loved is just a selfish idea that the world couldn’t get by without my consciousness in it. But then, I can be a pretty selfish person – as can everyone.

The more I watch, the more convinced I am. Conversations with the dead through spirit boxes may seem like paranormal guff, but it lends hope.

And above all of that, it makes me know that my experiences with shadows, feelings, goosebumps, even conversations are not (always) the result of insanity. Unless all of Ghost Adventures is faked. In which case, please inform the loony bin of my arrival.