Quick update

Just a very quick update for now: all is marvellous! I'm back doing my PhD, my 5-days-on-23-days-off tablets routine is completely fine (3 out of 6 done!), I feel great, my hair has started to come back, my blood counts are back to normal (people can be as ill as like they near me now!), the snowdrops and crocuses are coming out in Cringle Park, so overall, things are looking very sunny indeed (except the weather, obv). My scan is booked in for mid-March, so I'll blog again once we know the results.
Happy Spring! X

You cannot see your brain in the mirror...

The brilliant artist David Shrigley often has a wise insight to offer and, as this shot of page 17 of his new book shows, when it comes to brains, he seems to have hit the nail on the, er, head! Following this sage advice, I opted against throwing my brain in the river, and am in the process of getting it fixed. A visit to the doc yesterday marked the beginning of my second of 6 tablet cycles (so I'll do 5 days on the tablets now, then cycle 3 will start in 28 days, and cycle 4 will be 28 days after that, etc). Although my blood counts are still a bit low, we're going ahead with the cycle: we're hitting it hard, as per the plan.

One of the things I've learnt along the course of this journey is that it's not a good idea to take anything for granted, and I need to be flexible with the narratives I construct for myself. For example, when my narrative of "I'll have an operation, then I'll lie around for a bit, then that'll be it" turned out to be not quite right, and I needed further treatment, it was a bitter pill to swallow (literally). So with this lesson in mind, yesterday I asked the doctor to go through all the possible outcomes of the head scan that I'll be having later this month. I want to be prepared for all eventualities; I don't want any surprises. Being flexible with my narratives, see?

She said that the scan pictures might show (a) improvement, (b) psuedo-progression, or (c) progression. Obviously (a) is ideal. (b) means it looks worse, but isn't really - it's the lingering effects of the radiotherapy causing swelling (this is why they wait a while after radiotherapy to do the scan). (c) means we have to talk about further options. What are the further options, I asked. Well, the next thing we would try, she explained, would be PCV chemotherapy, which is the one you have intravenously.

Hmmm. Clearly, we hope it won't come to that. But if it does, we'll be prepared and we'll get on with it, like we've got on with brain surgery, radiotherapy, and tablet chemotherapy. I don't think this is pessimism (although it feels faintly like it), I think it's being flexible and prepared. And I think David Shrigley's insight is a good one to keep in mind: however tempted you might feel, you really cannot just throw your brain in the river. Even if it takes a while, you must get it fixed.

I'll keep you posted.

Next steps

It's been a while since my last post, and that's mainly because I've not had much to report. November went well, and I managed to string out my birthday for at least three weeks, so that was good too. Stephen made my actual birthday a day of glorious treats, starting with breakfast in bed, then a tasting menu at a top restaurant in the peaks for lunch (and I could eat and enjoy it all! Woohoo!), then a walk round Chatsworth, then a cosy fire and a film. Lovely! He also surprised me with a set of Uilleann pipes - Irish bagpipes - which are amazing (not sure what the neighbours think)! I also went to the ballet with my mum, afternoon tea with my friends, a gig with Stephen, and in general managed to have a full-on birthday festival! Hurray!

To make it even better, it turned out that my appointment back at the Christie to start my next stage of treatment was not, after all, on my actual birthday (as previously reported in the blog post of doom a few weeks ago), but the day after. So I donned my wellies, turned on my tunes, and stomped on in. I saw my lovely doctor, told him how good I was feeling ("That's because you're tough", he beamed at me! He's so lovely!), and picked up my prescription of 5 days of tablets (remember we don't call it chemo - just like taking a paracetemol etc), plus all the other tablets that go along with the tablets (e.g. anti-sickness, anti-biotics, blah blah blah). The drill now is that I do 5 days of tablets per month, for 6 months. I'll be having another head scan some time in the new year, then surveillence scans every so often for a bit

So the 5 tablet days were absolutely fine, except for the seventh day when I woke up in a panic that I hadn't taken my tablets the day before (how quickly we form habits). But apart from that, I felt fine. My appetite was a little bit low on days 4 and 5, and I had Heinz tomato soup one day for lunch (recall that this was about the only thing I could manage when I was doing the 6 weeks of treatment), but I soon recovered to full strength chocolate cravings. So it looks like the new regime will be entirely manageable. And I've got my progress chart on the go again, with a sixth of it ticked off already.

The final thing I'd like to report concerns my hair. My amazing hairdresser has sorted me out with a set of wefts. For the uninitiated (I was one of you until a couple of weeks ago), a weft is a type of hair extension - a piece of hair that can be stuck to the skin or to other hair. My brother amused himself for a while by sticking one onto his chin so it looked like he had a Chinese-style beard, and if you leave them lying around, out of the corner of your eye they can look like some sort of weird animal, but that's another story. Anyway, my wefts are the most marvellous invention, and totally cover all my bald patches, so I can go about the place without fear of comb-over-slippage, and without having to wear a hat at all times. Also, Stephen has discovered new talents - he cut them for me so that they matched my own hair (some were too long and looked funny).

And that's it. I'm feeling thoroughly excellent, I've got some lovely new stick-on hair, the new tablet routine seems fine, and in 6 weeks I'll be going back to work. (I can't wait. There's only so much Come Dine With Me a person can watch.)

All that remains is for me to wish everyone a very merry Christmas and a joyful new year, and I'll post again in 2013.

xxxxx

November

This time, I've decided not to do a proper blog post - I'm feeling very very well and have nothing much to report, except that the 'Period Dramas based on Literature' section of Netflix is really good, and Cringle Park is starting to look very wintry now! Instead of words from me then, I thought I'd share something from my new favourite discovery: Brene Brown, Professor at the Univerisity of Houston. I came across her, courtesy of Lindsay, via the platform of TED talks, which are really worth a browse if you're not familiar. Anyway, this talk struck me as particularly glorious, so here's the link.

www.ted.com/talks/brene_brown_on_vulnerability

Other than that, I have nothing to say except that November is great. Enjoy x

Fighting talk

Today, I feel different. This is the third day since I finished the 6-week intensive stage of treatment, and I feel somehow faster, lighter. I've been so slow and heavy for the last few weeks, and today, I feel like I might have some energy. I had a cheese sandwich for lunch, and I actually enjoyed it! This is looking good!

BUT. Maybe there's a But. My glamourous radiographer friends told me when I finished radiotherapy that there is a delay in the side effects, and I will feel worse before I feel better. The radiation keeps doing its job for a good couple of months, even though I'm not getting direct doses. They said that after about 10 days (so a week from now) I'll feel most rubbish, but that I should expect to feel side effects for some weeks yet. I've also noticed that my hair has NOT stopped coming out, as I expected, but is now coming out from completely different bits of my head. On reflection, I have realised that, as well as falling out at the beam entry sites, it has just started coming out at the beam EXIT sites too. AND I've got an ear infection because the radiation has caused damage inside my ear. AND I have to stay on special anti-pneumonia antibiotics for my whole month off, because my blood counts were low at the last test, which means my wretched immune system isn't doing its job properly. AND it turns out that my next round of tablets is going to start on, of all days, my birthday. BOO!

But despite this list of doom and woe, there's no denying that I definitely feel different today. I feel better! So they can try and beat me down, these side effects, but I have decided that I will be a medical miracle and defy them all. I enjoyed enjoying my butty today, I enjoyed doing a couple of laps of Cringle Park because I wanted to, not because I had to get to an appointment. I'm fed up of feeling not-quite-myself, and today is the first day that I've felt vaguely like myself for ages. So, I hereby declare to any side effects in the neighbourhood that are planning to stop by, my door is CLOSED. LOCKED. BOLTED. Don't bother, I'm not at home. I'm out skipping round Cringle park in the winter sun (WITHOUT my sunglasses on!), or eating a glorious meal with more than two ingredients at a top restaurant. THEY CAN TAKE OUR HAIR, BUT THEY'LL NEVER TAKE OUR CHEESE BUTTIES! Woohoo!

By the way, that's Athena at the top, goddess of wisdom, courage, strength and WAR (take note, side effects). I also liked her mad hat. I'm into hats at the moment.

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