Side effects!

When you embark on any kind of medical treatment, you run the risk of suffering side effects. It gets fun when the doctors prescribe you something to counteract the side effects, then you get side effects from that medication, so they give you something for those side effects, which also has side effects etc etc. This happened to me when my first transplant was failing: I went from high blood pressure to diarrhoea via water retention and gout. Good times.

So anyway, I wasn't surprised when I was told that both chemotherapy and radiotherapy have side effects. There are the obvious ones, like sickness and diarrhoea, but there are also some unexpected ones, like a craving for artichokes and a sudden passion for tiddlywinks. OK, I made those ones up. But I was told that the chemo I'm taking can cause soreness on the palms of your hands and soles of your feet.

When I heard this, a subconscious, non-rational part of my brain responded thus: I have never heard of this and it sounds implausible, therefore it definitely won't happen to me.

A few days ago, my feet were hurting. I searched them for non-existent blisters. Had I developed amnesia and forgotten about attending a fire-walking event that went horribly wrong? 

I didn't clock a thing.

It was only when this crevasse opened up on my thumb that I realised the thing that definitely wasn't going to happen to me definitely was happening to me.

Lesion caused by movements in the tectonic hand plates, which are definitely a Thing and not something I just made up

I'd asked one of the radiotherapy staff about managing soreness (albeit in a rather different part of my body) and he'd suggested "double bass". I asked if he meant Diprobase. No, he said, and repeated the name of the recommended cream: double bass.

I've met a double bass. I'm not smearing one of those things up my crack.

My Facebook friends have recommended Diprobase or red-top Neutrogena (ie the full-fat version, as opposed to the semi-skimmed blue-top variety I have in my bedside drawer). So they're on this week's shopping list. 

I shan't bore you by telling you all the side effects I'm experiencing, but I will say this: buy shares in Imodium now. 

Cancer treatment begins and I may be a world record holder

Treatment started on Wednesday with a syringeful of chemotherapy solution. It was this colour - 

- which was nice, because it matched my cardi. 

Seriously, though, when someone puts something that colour in your veins, you know it's toxic. You just hope it's killing the right bits of you.

Afterwards, I headed downstairs with a bagful of chemotherapy tablets, to have my first radiotherapy session. And this is where my proud moment occurred.

The team will only give you pelvic radiotherapy if you have around 200ml of liquid in your bladder, so they make your drink about half a litre of water 45 minutes before you're due to get zapped. Before switching the rays on, they take a scan of the area, to check everything's as it ought to be. 

I lay on the bed/table, surrounded by space-age machinery. They scanned me. I waited.

Then I waited some more, passing the time by imagining that said machinery was going to put me in stasis so I could carry out a very important space mission.

Eventually, the nurse came through. 'Your bladder is ginormous,' she informed me. 'Do you think you could fill two cups of wee and come back?'

I told her I could. I have not had children, so - to steal a Victoria Wood quote - I have a pelvic floor like a bulldog clip. Stopping mid-flow? Pah! Piece of piss (almost literally).

When I returned, they showed me the scan. The screen was entirely filled by my bladder. However, when they plonked an ultrasound wand on me to check how much liquid was left in there, I still had around 800ml. One-and-a-half cups later and I was ready to go.

This means that, when I initially hopped on the bed, I had around 1.5 litres in there. I have a 2 litre bottle of Pepsi in the kitchen. The idea that I can hold 3/4 of that in my bladder makes me feel both proud and disturbed. HOW IS THAT EVEN POSSIBLE? It occurs to me that what I thought were my breasts are in fact the rest of my organs, shoved into my chest by a land-grabbing bladder. Whatever - I feel I ought to contact whoever took over from the McWhirter twins at the Guinness Book of Records and ask to be included in the next edition. 

Computer says no. Well, it might do. We haven't looked at it.

I was meant to be at the Tears for Fears / Alison Moyet gig at the O2 this evening.

The hospital called me yesterday, telling me I had to go in at 12.30 today to pick up my chemo tablets. It absolutely had to be today, they told me, because there were no other free appointments before I start radiotherapy. (You can’t just pick up your tablets. No, you have to have an appointment where you’re lectured for an hour on how to take them.)

I have very low energy to start with, so was concerned this might affect my ability to get to the gig. Also, I have to get up and go to the hospital tomorrow morning for 4 hours of blood tests. But I accepted the appointment. Of course I did.

I turned up at 12.30. My appointment was at 13.30.

I waited.

There were no tablets for me to pick up because the doctor hadn‘t written the prescription. And the reason for that is because they won’t know what dose to prescribe until I‘ve had the tests tomorrow WHICH THEY SHOULD HAVE KNOWN I WASN’T GOING TO HAVE UNTIL TOMORROW BECAUSE THAT INFORMATION WILL BE ON THEIR SYSTEM.

So I’m at home, instead of having a joyous time with musicians I loved back in the 80s.

Fuck cancer. And administrative incompetence.

And you'd like that tattoo where, Madam?

I knew I was going to have a tattoo before I started radiotherapy, so that the people with the ray guns would know where to attack.

Given where the cancer is, I thought the tattoo was going to be in a place that meant I would only be able to show it off if I:

1. learned to twerk in downward dog pose;
2. went clubbing;
3. with my pants off,

and that the tattooing process was going to be eye-watering.

It turned out that none of this was true. I am relieved and yet saddened by this loss of anticipated comic material. I have a tattoo at the top of each thigh and one, um, about half way between the two, on my [insert euphemism of choice]. They're not even interesting tattoos. I was hoping for Japanese symbols that I thought meant "serenity" but actually meant "wanker". They're just dots.

So, apart from the palaver of trying to get a cannula into me - nurse #1 failed and nurse #2 entered the room to find me furiously doing press-ups in an attempt to make my veins pop up - my CT scan and tattooing were unremarkable.

Radiotherapy starts on 13 February. It's all starting to feel a bit real now.

Close encounters with the oncologist

...of the nitrile-gloved kind. (At least she had short fingernails.)

So - I've had my first consultation with the oncologist. Apparently, my tumour is fairly small. Mr Botty-Slicer of St Thomas's Hospital cut most of it out last December, so there's just a 2cm thing left in there. That makes it a Stage II squamous cell carcinoma. Get me with the lingo, eh?

The oncologist is, I think, eastern European. I could be wrong, but judging from her accent and the fact that I can neither spell nor pronounce her name, that's what I'm going with.

She is lovely.

She spent ages showing me my scans and explaining treatment options to me. My body contains enough kidneys to feed a family of five, so they won't be able to use the standard radiotherapy / chemotherapy treatment on me. It might kill off the only one of those kidneys that I actually need. (I'd be quite happy for someone to take the other ones away and keep them in the freezer. Seriously - they're just taking up space.)

The doc explained that, instead of the usual cocktail of chemotherapies and radiation blasts, I can only have very focused blasts and probably only one of the chemotherapy types (and possibly not have any chemo at all). The usual treatment has a 90% success rate. It's difficult to say how much my chances will be affected by the less severe treatment plan I'll need.

The alternative, I was told, is to have more surgery, which would result in me needing a colostomy bag. I considered that option for a good 12 milliseconds before saying "Dear God, no - are you barmy?'

The colostomy option awaits me if radiotherapy is unsuccessful. Let's hope it doesn't come to that. I don't need that as a new party piece - not least because I never go to parties.

We ended the consultation with her examining me, because no consultation about this condition is complete until someone's poked you in the chocolate starfish. Like I say, at least she had short fingernails.

I hope this doctor is going to use antibacterial hand-wash before seeing the next patient  

Next stop: CT scan on Friday, when they will be tattooing the place they need to point their ray guns at.

New year, NEW DIAGNOSIS!

Hmm. It seems I didn't write a single blog post last year. Not to worry - I have a new subject, bursting with enough humour for a series of posts. WARNING: may also contain trauma. Hopefully the latter will be short-lived (and I'll be long-lived.)

I've got anal cancer. I'm seeing the oncologists this Thursday, who will - I hope - give me some indication of when I'll be starting radiotherapy. I'm looking at five weeks of butthole irradiation, accompanied by a low-dose chemotherapy pill. Apparently, this won't cause my hair to drop out. Which is good, because (a) it's winter and I need head coverage, and (b) I don't have the cheekbones for bald. 

Those of you scooting over from my Facebook page will know most of this already. In fact, these posts will primarily be for those of my Facebook friends who asked me to write updates.

I won't have anything to say until after I've seen the oncologist. In the meantime, here's a picture of me, indicating the location of the mutant cells.

They're in there somewhere, the little buggers.

I dream of being somewhere as chichi as Fawlty Towers

Tomorrow morning, I was planning to donate a small piece of my uterus to the NHS. This would have required me to leave home at an hour that is not so much godforsaken as one that God has shunned and is really rather sorry he ever invented. To ease the pain of this early start, I booked a hotel room close to the hospital.

Unfortunately, the operation had to be postponed.

After I explained to the nurses that I'd already made a (non-refundable) hotel booking, they managed to get me a pre-surgery appointment for tomorrow morning, so that I wouldn't lose the money I'd forked out for the room.

So, tonight I am in a hotel near Paddington station.

Good points about the hotel:

1. The receptionist. He is the only reason I haven't fled this foretaste of eternal torment to seek out the comfort of a damp bench.
2. The wifi. It's free and pretty fast. Which is just as well, because the TV reception blinks in and out (and nobody wants that during David Attenborough).
3. The bed. It hasn't broken. Yet.

Now for the bad stuff.

The aforementioned receptionist informed me that I was on the fourth floor. Naturally, there is no lift, just a winding series of narrow stairways. The receptionist kindly offered to carry my bags for me. I am not proud. I said yes.

The first thing I noticed about the room was that the bed takes up about 75% of the floor space - and not because the bed is big.

The second thing I noticed was that it was a bit noisy and a lot cold. On further investigation, I discovered that this was because the sash window cannot be closed, due to it missing the fastener that allows you to shut it properly. You know, insofar as sash windows are capable of shutting properly. There was just a lonely-looking screw sitting there, helpless to prevent the force of gravity from pulling the upper pane open.

As a bonus, someone had left a half-eaten cake in a sandwich bag on the ledge outside the window.

I looked into the en suite bathroom. It is, to be blunt, a cupboard.

You may notice that a certain piece of bathroom furniture is missing from this cupboard. I know I did. I panicked. WHERE, FOR THE LOVE OF ZEUS, WAS THE BOGATORY?

The answer, it turned out, was "In another cupboard across the landing". There was a bonus here too: the last person to use the toilet appeared to have eaten a lamb dhansak and neglected to inform the staff that they hadn't cleaned up after themselves. Probably because there was no toilet brush. Probably because there wasn't enough room for one.

I told the receptionist about the window. He apologetically explained that he wouldn't be able to fix it but promised to put a heater in the room for me. This he duly did, schlepping back up to the fourth floor while I went out for a stroll.

I returned to a toasty room. Feeling mildly cheered, I decided to take a shower and have an early night.

I rapidly changed my mind after I started running the shower. As soon as I turned the controller away from the "cold enough to preserve a mastodon" setting, the water slowed to a sad dribble. If this place has a water pump, it is incapable of getting hot water to the fourth floor. Perhaps it feels too old and knackered for such crap.

Well, me too pal. Me too. Some people (read: masochists) may find a cold shower deliciously bracing, but I wasn't one of them even before I got all middle-aged. Besides, who wants bracing at 9.30pm on a Sunday?

I ran my greasy hair under a "probably about right for keeping your milk fresh" setting and decided to have a cup of coffee from the grubby tray on the bedside table that was not at the bedside. It was next to the door. (In fairness, that is quite close to the bed, but only because it is impossible for anything in this room not to be.)

I looked behind the not-at-the-bedside table for plug sockets.

Nothing.

There are only two plug sockets in this room, semi-concealed behind the wardrobe. I ended up boiling water with the kettle balanced precariously on the duvet. Like so.

I have now drunk my instant coffee, got the window as close to shut as I can, and am preparing to bed down. 

I tend to need several bathroom breaks during the night. Naturally, I did not bring a dressing gown, because I was expecting a fully-equipped en suite.

I don't know if the people in the next room have similar bathroom habits.

If they do, I hope they don't mind seeing me in my pants.

An unlikely saviour

I was in my late 20s. I had spent my youth as a good Christian girl but, having lost my faith and moved to the den of vice that is London, I decided to do all the things that good Christian girls don’t do.

Among other things, this involved a lot of drugs, legal and otherwise.

One drug that was still legal at the time was GHB. I loved it. It gave a nice buzz and, I was told, increased your metabolic rate. For a young woman who liked getting high and worried about her weight, it was ideal. I mean, it’s basically a cocktail of paint stripper and drain cleaner, but who cares? IT GETS YOU HIGH! IT KEEPS YOU THIN! (OK, so it also gives you terrible acne, but two out of three ain’t bad.)

Because one of its effects is a raging horniness, GHB was sold in sex shops. I spent an inordinate amount of time (and money) in one particular sex shop in Soho.

Billy was one of the guys who worked in the sex shop. He was in his late forties, greying, moustachioed, and with a Yorkshire accent heavy enough to anchor the Knock Nevis.

The Knock Nevis: heavy anchor required.

I adored him. He adored me. We chatted while he worked and went to the pub together during his breaks.

Billy watched me as I went from a giggling, tipsy customer who came into the shop with her buddy, to a more haggard and heavy GHB user, to a solitary shopper who slunk in asking where the nearest coke/crack dealers were.

One evening, he took me to one side. “Rachel,” he said, “you’re a nice girl. But I’ve seen a lot of nice girls come in here, who’ve ended up living on the streets, selling their arses for a fiver. That’s where you're headed.”

And that was the most frightening thing anyone has ever said to me.

Billy wasn't the first person to express concern about my drug use, but coming from someone who had worked for years in the heart of Soho, it meant something. He knew what he was talking about.

Billy stopped serving me GHB and refused to tell me where the local dealers hung out. He instructed everyone else in the shop to do the same.

Me? I stopped drinking and got clean. Billy’s words played a large part in that.

A Double Row of Shaving Brushes

He bought fourteen of them: seven for him, seven for his wife.


'What?' he said. 'They were on special offer.'


'The only problem, darling,' his wife pointed out, 'is that they're identical. How will you know whether or not the bristles you're running over your face in the morning were lathering my armpits eleven hours earlier?'


He pondered this, stroking his (smooth, stubble-free) chin. 'I shall label them' he announced, and immediately left the house in search of a stationer.


That afternoon, he lined up the brushes in two neat rows: a mini-platoon of brushes bearing a small red sticker, facing an equal number of green-stickered comrades.


His wife nodded approval. 'Red and green. Like it,' she said. 'Which am I?'


'Whichever you like,' he replied. 'I avoided pink and blue,' he added. 'I know how you feel about pink and blue.'


'Quite right. Thank you.' His wife picked up a green brush. 'I'll take red,' she announced.


Neither the stickers nor the rows lasted long:  wet hands rapidly wore away the coloured dots, and his wife had never been one for keeping things tidy. So he was never quite sure where his morning brush had been. And, despite several furtive Google searches, he never worked out how common it was for women who objected to pink and blue also to shave the many, intimate body parts that his wife did.

Earth addresses the Convocation of Planets

Hello. Yes, Earth here, Sol system. Sorry it's been so long since I attended the Convocation. I've been feeling ill; got some sort of autoimmune condition. Nonsense happening all over my crust.

Oh don’t worry, it's not catching. The pathogens – well, I call them pathogens but they're really part of me, I'm afraid – haven't learned to jump that far. Not yet, anyway.

What's that? Oh yes, quite right, Moon, they have jumped to you. I'm afraid they've got you in their sights too, Mars. Yes, that thing rolling around and tickling you? That's made by them, but it's not one of them. Well yes, I suppose it is entertaining for you, given there's nothing else going on in your part of the system, but believe me, you wouldn't want billions of the creators of that little vehicle swarming all over you. It's a nightmare. Luckily for you, they're a long way from being able to survive on you for any period of time, even if they've managed to land things on you. Well, I say that, but they move very quickly. It only seem like yesterday they climbed down from the trees – my beautiful trees! – and started walking upright. Which was a bad idea; I thought so at the time. Their spines clearly hadn't evolved for that kind of movement. Mind you, them moaning about their back pain is the least of my worries.

I realise this is difficult for most of you to relate to; you're largely lumps of rock or gigantic balls of gas. In fact, has anyone else evolved conscious life forms? Just three of you? And how are you finding it? Yours did what? Oh dear, I am sorry. Yes, I can see the hole from here. And they're gone now, you say? Gone where? Oh, just … gone. That's rather sad but, you know, probably for the best.

Pardon? Right. So yours went through a phase like mine but got past it? So what are they like now? Fewer, but peaceful? That's nice – gives me a bit of hope.

And what about yours? Just started making tools, eh? Oh you are in for fun.

Look, most of them are all right. The ones that don't walk upright – there's loads of them, different kinds – they just get on with their lives, reproduce and die. Well, OK, a lot of them eat each other, but sadly that seems to be part of the system I've developed. I really didn't mean to. 

Even most of the upright ones are decent enough, though they're not very nice to the not-so-upright ones. Arrogant, really. It's just that there are so many of them, and they have a tendency to huddle in tribes and look at other tribes as if the others were a disease and they were the immune system. So they attack each other. 

What's that? Oh, mostly with words, which is unpleasant, but also with laws, which is more unpleasant. But the thing that really worries me is when they attack each other with weapons. That's painful. And they create new, more powerful weapons all the time. Excuse me? Yes, exactly – the sort of weapons that did that to your face. I really am sorry about that, by the way. Does it still hurt? Good lord – right down to your mantle? Blimey. Well, I'm glad it's getting better. My lot appear to have pulled back from that for the time being, but – as I say – they move very quickly and things are changing all the time. So who knows? I can't say I relish the prospect of that kind of pummelling.

But do you have any advice? How do I get them to understand that they're all a part of me? Yes, please, by all means – if yours have moved beyond that phase, tell me what you did. Oh. Right. You let the violent ones evolve out of existence. Lots of casualties along the way. Hmm. And how long did that take?

Ah. I see.

No, no, it's not that I think they're going to destroy me completely, though they probably could. It's just – I'm not sure they'll last that long.