Progress charts and rainbows

As a social scientist, I like to think I know a thing or two about human behaviour and motivation. One thing I definitely know is that, when people do an online survey, if there's a progress bar that tells them how much they've done and how far they've got to go, completion rates soar: without the progress bar, people get frustrated and give up; if people can visualise their progress, it orientates them and spurs them on towards the finishing line. With this social science insight in mind, at the beginning of my treatment, I made my own 'progress bar': a simple calendar for the 6 weeks of treatment, drawn on a piece of A4 and selotaped to the inside of a kitchen cupboard. When I watched Andy Murray beating Roger Federer in the gold medal match at the Olympics earlier this year, I remember the commentator saying, "Come on Andy, just one point at a time, it's like a ladder, just one point at a time." My kitchen cupboard chart was a made in that spirit, and I have religiously crossed off each day for the last 6 weeks, one at a time.

And now, here we are, with only four radiotherapy sessions left to go! Yes, today will be number 27 out of 30, and tomorrow, there'll be only three left. Both radiotherapy and tablets (we don't call it "chemo" - it's just like taking a paracetemol, you see) will finish on the 30th, then I'll have the whole of November off to let my body recover, before I start the tablets again for one week in every month, from December until May. I can't wait to have a month off, although I will miss my glamourous radiographer friends, who have been exceptionally kind and lovely throughout the whole thing. The main thing I'm looking forward to is that there are now only four sessions to go until my hair can start growing back. I can still cover the bald patches with other hair, but it'll be nice not to have to worry all the time that my comb over has slipped and I actually look like Golem from the Lord of the Rings.

So the end is in sight, we're steaming towards the finishing line, there's light at the end of the tunnel, and by the end of next Tuesday, I will have walked 132 miles to and from radiotherapy sessions. As I walked through Cringle park yesterday, with my wellies on and my brolley up, the sun suddenly blazed through a gap in the clouds, although it was still pouring with rain. I peeked out from under my brolley, and sure enough, there it was: a perfect arc of brilliant rainbow, all seven colours beautifully differentiated, seemingly beginning and ending inside the park. It made me feel quite emotional actually, how beautiful it was.

Walking sampler megamix

Music, morale and hair

As I go stomping through puddles on my way to and from my daily radiotherapy sessions, I often listen to music. I've made my own playlist (in my day they were called compilation tapes! Ha!) of feel-good tunes that get me stomping along in rhythm and sometimes make me do a little wiggle/supermodel walk. I've realised that the music has two main functions: on the way there, it makes me feel good and ready. On the way back, it banishes any feelings of self-pity that occasionally lurk in the darkest shadows of my mind. My keeping-up-morale playlist is as follows:



Smooth Criminal - Michael Jackson [Annie are you OK!]
Work (Freemasons Radio Edit) - Kelly Rowland [THE tune for a crisis of any kind]
Brain Stew - Greenday [Ha ha ha]
Monkey Wrench - Foo Fighters [Just because I love it]
Buddy Holly - Weezer [Ditto]
I think we're alone now - Tiffany [This may be what makes Stephen disown me]
I think we're alone now - Snuff [Punk version of above. Does this redeem me?]
Angel Interceptor - Ash [Ash had to be there!]
Take the power back - Rage Against the Machine [Ditto]
Baila Cinderella - Hubert Laws [This is the one that makes me do the supermodel walk]
Over and Over - Hot Chip [Makes me feel a bit cool]
Wake up - Arcade Fire [Makes me feel a bit epic]
Monosyllabic girl - NOFX [Makes me smile]

This playlist may reveal me as being hopelessly stuck in the 90's, but it certainly does the trick. It came in particularly handy yesterday. I was sitting waiting to pick up a prescription in the hospital pharmacy after my treatment, and was absentmindedly fiddling with my hair, when I found a really big knot. I started to gently untangle it with my fingers, then the whole lot came out in my hand. Now this sounds quite dramatic and awful, but it wasn't unexpected - my hair had started coming out a bit on one side earlier in the week. The first time a noticeable amount came out was when I washed it, and that was a bit of a shock. Then for the next couple of days, I noticed the hairline around my right ear starting to look patchy, as well as significantly more malting than usual (fellow long-haired people, or those that live with them and do the hoovering, will corroborate that malting is par for the course). Anyway, so I sat in Pharmacy with a handful of my hair and felt quite sorry for myself. I picked up my prescription, dropped the hair in the bin, and, still feeling a bit sorry for myself, headed off. But by the time the opening thrashes of Greenday came on, I was doing the supermodel walk again.

My overall hair is actually fine: on the right hand side, where the radiotherapy x-rays go in, I've got what looks like a (very trendy) undercut, but I've got plenty of hair to cover it (see photo, taken last night). I'm probably going to train my parting to be on the other (left) hand side, but other than that, no action required. It's actually quite cool because, if I lift my hair up, I can now see my brain surgery scar, which is very neat but therefore probably not conducive to a story about a shark attack. Never mind.

So after a slight hair-related dip in morale earlier this week, lots of music and lots of love and big cuddles from Stephen have picked me up again. I'm not expecting to go completely bald (been there done that when I was 18. Sorry Mum.). I'm expecting to lose the hair at the sites where the beams go in, but hoping that I've got enough in other places to do elaborate comb-overs and other such glamourous do's. And if anything more dramatic does happen to either hair or morale, at least I'll know that I've got Kelly, Greenday, Tiffany et al to see me through.

On Food

What do the following items have in common: Heinz tomato soup, plain toast, beans on toast, plain cheese sandwiches, custard? It may occur to you that the common denominator here is that these foods are the staples of a particularly fussy 6-year-old. You're probably right. They are also pretty much my staples at the moment. One of the side effects of treatment that I seem to be experiencing is sense-sensitivity: lights are too bright (I've been walkiing round in my sunglasses hoping people might mistake me for a celebrity rather than a weirdo); noises are too noisy; smells are really smelly; and tastes are very, very strong. The effect is weaker at breakfast and lunch, but in the evenings (i.e. after I've taken my tablets and been for a session), I can't face much food, and the food I can face is the ideal menu of a fussy 6-year-old. I've even gone off cups of tea (I used to average about 8 cups of Earl Grey a day), and I could no more drink a cup of coffee than fly to the moon! Weird.

In the time before (life is now chronologised by me into 'the time before' and 'now'), Stephen and I used to have fish for tea at least 3 or 4 times a week, and Stephen, who is a very good chef, often cooked us up sumptuous feasts of complex flavours and textures. Now, his chefing skills are being stretched by the need to make two different teas: we sit at our table, and while he has a lovely plate of food with more than two ingredients, I enjoy my Lancashire oven bottom muffin with plain Cheshire cheese. At least mine's local, I suppose. It'd be OK if I could just switch my main meals and have a bigger lunch and a smaller tea, and on some days that's exactly what I do. But on the days when I have to have lunch by 11 o'clock in the morning (see previous post about strategic lunch planning), it's oven bottom muffins all the way. Incidentally, Lancashire oven bottom muffins (see picture) are a new discovery for me - plain white rolls with a soft inside and a smooth surface - perfect for fussy 6-year-olds/me.

My aversion to strong tastes and aromas extends to cooking, but that's ok, because Stephen always thought he was head chef anyway. It also extends to clearing up (scraping dirty dishes, having to open the bin to put things in it - ugh), which is probably a bit less OK! But one of the main problems I have is the whole self-identity thing again: I like to think of myself as someone who will try anything, and there's nothing I don't like. Now, I'm a fussy 6-year-old. It's funny the things that turn out to matter! Oh well, it's only temporary - I'm confident that when I've finished my treatment I'll be back to my omnivorous self (as well as owing Stephen some major tidying-the-kitchen dues).

One last thing on the food topic: for those of you worrying about the obvious potential side effect of this diet of tomato soup and oven bottom muffins, have no fear: I'm having Weetabix with a handful of All Bran religiously every morning. In fact, today I went for straight All Bran. I won't, however, be doing that again. I think the cardboard box might taste better.

Cringle Park

Starring A Austin
Directed by S Jeffares
Idea by Paul Wolinski (65daysofstatic).


Turn up the volume.

A day in Radiotherapy

Today I thought I'd write a bit about what actually happens during a radiotherapy session. I know I feel much better about all this stuff the more it's demystified, and maybe writing about it and explaining it is the ultimate demystifier (no, not demister, that's something different. DemystiFIER).

A bit of context-setting first. Every morning, I look at my appointment time, and make a plan. An eating plan. Basically, I have to take my tablets an hour before the session, and they have to be taken on an empty stomach, which means not eating anything for two hours before or an hour after. So I count backwards from my appointment and work out an eating strategy that fits in. I have resisted the temptation to use Excel to create a daily critical path project plan. Then, when the time is right and I've strategically eaten/not eaten, I stomp/splosh/stroll over to the Christie and head straight for the Radiotherapy department. I hand in my appointmnet card and get 'queued in' (the technical term?), then she writes down my apointment for the next day. This is one of the more frustrating aspects of the whole thing - that they only tell me my appointment time the day before, which makes it difficult to plan other things. However, I get my Monday appointment time on a Friday, i.e. three whole days in advance, so I can actually plan things. Ha! Feels like I beat the system a little bit every Friday!

So then I sit and do a bit of knitting while I wait to be called through to suite 8 ('my' machine - it looks like the one in the photo). When they take me through, they always check my details first, even though we all know each other pretty well by now. Then I lie down on the bed with my head on my own personal bespoke head rest, they put a cushion under my legs (not bespoke), and they put my mask on me. The mask is designed to make sure my head is in exactly the same place every time. It was made for me in a way that reminded me a bit of year 9 art: they used strips of plaster bandage dipped in warm water to mould my face and round the top of my head, my ears, and under my chin, then used the plaster of paris mould to make a clear perspex version (that bit was not like year 9 art). So the mask goes on my face (it's open at the mouth and nose), and then they clip the mask to the bed. This was pretty horrible the first couple of times - I'm not a claustrophobic person, but it felt pretty claustro in there..I'm used to it now though. Then, the two (young glamourous) radiographers spend two or three minutes shouting out some numbers, then they leave the room - they control the machine from the computers outside. I'm on the bed for about 5 minutes, and I know when the machine is on when I can hear a sort of humming buzz. Nothing touches me, it doesn't hurt, there's nothing to it really. Then they come and unclip my mask, and that's it.

So that's the routine, and the routine-ness of it is reassuring - it's starting to feel quite normal now. I'm even quite enjoying having some structure to my days and weeks - while I was recuperating from the operation, days and weekends and weeks were quite formless, but now, weekends and weekdays are different, and on weekdays, I generally do my own thing in the morning, have lunch (strategically), then head out on my stomp. I'll take my camera in some time next week and take a snap of the mask to show you. But for now, that's it. Thank you so so much for all the glorious comments, I've enjoyed reading them so much! And as you can see, by popular demand, I've stuck to the macro-blog format (for now...). Until next time xx

Stomping through puddles

So here goes with my first post of my first ever blog, inspired in no small measure by my brother's glorious medical elective blog, all the way from the Amazon rainforest (I can highly recommend it if you haven't seen it already, just google 'Michael Austin elective' and it's the first hit). I had the bright idea that this, my official brain blog, might be a good way to let people know how I am, as well as providing a sort of journal or record for myself of this funny, odd time. It's a time where I'm stepping briefly off track - a diagnosis of a brain tumour, brain surgery, and 8 months of further treatment mean that my PhD is temporarily on hold; and enforced teetotalness and a vague feeling of queasiness mean my social life is also slightly on hold! So I'm stepping off track for a bit, but I have every intention of getting back on track in a few months time. In the meantime, I think, therefore I blog (I can't be the first one to have said that!).
At the moment, I'm doing 6 weeks of intensive radiotherapy with concomitant (the technical term!) chemotherapy - they're designed to complement each other. 'Intensive' means every day - I go every day, Monday to Friday, to the lovely Christie hospital in Manchester for a session of radiotherapy, and the chemotherapy consists of taking 4 little tablets at home (the tablets are 7 days a week). As an aside, one of my first observations about radiotherapy is that all the radiographers are very young and glamourous. Intrigue! So far, I've been walking over to the Christie, which is about 2 miles away from our house. The exercise feels good, and sometimes I listen to music and sometimes I just walk. Stephen came with me the first couple of times, but I've started going on my own now. I like going on my own because it fits better with my self image as Independent Woman Taking Things In Her Stride. And I just like walking in general. Although I am aiming to go on my bike eventually. We'll see. Anyway, today there were severe weather warnings, and 4 inches of flood water outside our front door. So I put on my wellies and Stephen's waterproof coat, put my brolly up, and headed off, having promised to call for a lift if I needed rescuing. However, far from needing to be rescued, I had a marvellous time stomping through puddles and listening to the satisfying pitter patter of raindrops on my rather fetching new Accessorize brolly. I had an early appointment today, so they saw me on time (I've realised that the later the appointment, the later the machines are running). Each session takes about 15 minutes in total, so I was in and out pretty quickly today. After my first week of treatment, I'm feeling pretty good - my appetite is a bit subdued, but otherwise I feel quite normal. Long may it last! With regard to the appetite, I'm seeing it as a clever balance to the weeks I was on steroids around my operation, during which I felt compelled to eat anything and everything I could get my hands on! So this is the first installment of my brain blog - future installments will be somewhat shorter. (Stephen thinks I should adopt micro-blogging principles and commnicate in 140 characters. Hmm.) But anyway, this one is just for practice and to kick us off. I'll blog again soon! x