Friday, August 31, 2007

Resolution without respite

A mad and horrible 24 hours later, I know what's wrong with me but do not yet feel any better.

Last night I skived the hospital. After uploading my post I was about to leave for the hospital when I got a call I'd been waiting for all day. That went on for 30 mins and by the time that finished I was starving hungry, even more tired, and just desperate for home, food and bed. And by the time I got to bed my thermometer was only reading 36.6 - a perfectably normal temperature. I almost jumped for joy and went to bed feeling hugely relieved.

Then I woke up myself up a little after 5am this morning because I was shivering so violently. It seems it had come with a vengeance and I was spiking at 38.7. I lay in bed with extra covers on, and my winter pyjamas, thermal socks, woolly hat, trying desperately to get warm as I worked out what to do. I was juggling the need to get to the hospital to sort my health out with the fact i had a conference call with New Zealand scheduled for 8.30am. It had taken a week to arrange what with sickness and the time difference - if I cancelled it would take another few days to set up again.

I decided to go to the hospital first - before the call. However early it was I figured there must be someone who could take my blood and pass me a urine pot to pee in. There was. It was the doctor I spoke to yesterday. She took my blood (had to go for a vein on my hand as the veins in the crook of my elbow were not playing ball - once again I was thankful I'd had the portocath fitted for the big drug sessions...). Temperature was taken (it had dropped slightly again to 37.9). And I had a pot to piss in. Which makes a nice change...

I'd taken a cab from Waterloo to Harley Street to save time. I now found myself taking a cab from Harley Street to the office to make the call on time. It was turning into an expensive day of racing from the hospital to my desk...and back again. After the call I phoned the doctor. She had the results. I had not one but two infections. A urine infection and a suspected chest infection. And I was needed back for a chest x-ray to confirm the latter so she could work out what drugs to give me.

The good news? I'm not neutropenic - my blood cell count is high enough to show that my body is responding to the infection normally. But with two of them I'm going to need some stronger drugs... apparently the antibiotics I'm on will fight urine infections only, not chest infections. And the fact that I'm still suffering means I might even be resistant to their effects on clearing up urine infections.

I broke the news to my boss that I wouldn't be able to join him for a meeting later today. And that I wasn't sure what state I'd be in tomorrow. When we had two important meetings. In response to that I got an earnest plea to be in the office tomorrow. Of course I don't want to miss the meetings tomorrow. I don't want to let people down and I've set these meetings up - they are prospects I've brought in. I want to see them through. But what sort of pressure does that put me under?

I need to see how I feel tomorrow before I make a final decision. I'll probably go in. I'm NOT indispensable. But because I'm easily flattered and clearly far too insecure, like to FEEL indispensable, and it will make mel fall for the earnest plea every time.

What a sucker...

(Later that day, after a mad few hours finishing up stuff or passing it on to others to deal with in my absence, another cab to the hospital, an x-ray and examination later, I eventually leave the hospital with my big bag of drugs. By the time I get home it's almost six o'clock. So much for getting home early to rest.)

Wednesday, August 29, 2007

Clouds and silver linings

It's not that the nurses aren't nice. It's just that it reminds me of chemo, and the smells and associations with that building make me feel physically sick.

This, I worked out, is why I've been putting off going to the day care centre to get my current three days and counting high temparature checked out. They want me in to do blood tests and urine samples, to see if I have an infection, and indeed, if my body is capable of fighting it. They want to see if my white blood cells are high enough to fight this off. If not, they will have to admit me. Which I don't want. But it's bugging me that my temp has not yet dropped for any length of time. Yesterday afternoon it dropped below 37 for about an hour, but has been up between 37.5 and 38 ever since so I'm heading there now to get checked out.

On the plus side, my hair is growing and is actually starting to become visible. I use this blog so often to rant about the bad stuff I've quite forgotten to include some more positive news.

A week before the last chemo my scalp started to ache like it did when the hair was falling out. By the time the chemo treatment arrived, I noticed a faint shadow, rather like Desperate Dan's chin, but only at the very top of the crown. Basically just where it first started to go. Now, three weeks on from my scalp hurting, I have a very short and very faint fuzz on the crown and more shadow/pre-fuzz developing around the sides, at the front, and I assume at the back. It's a lot thinner than my old hair, of which there is still the odd strand on my head. It makes looking in the morning every day far more exciting than it has been for a long time...

And so far, it doesn't look remotely ginger, despite R's repeated attempts to make me think it is.

Tuesday, August 28, 2007

It ain't over til the fat (bald, and feverish) lady sings

It's been a hectic or internet-less week hence my online absence from this blog.

Monday - feel poopy. Sleep in. Go to work late. Stagger through an afternoon where I cherry-pick the easiest, most brainless tasks on my list because I'm still feeling stupefied on the drugs.

Make a call to someone important that doesn't know me? Save that particular task until tomorrow just in case I find myself on the phone in the middle of a sentence suddenly wondering just who I am talking to. A boring and repetitive database search? I'm your gal.

In the evening we go see a gig we had tickets for. It's the first time I've ever sat in a big comfy armchair throughout an entire gig, way at the back, only able to see the band on the monitors suspended from the ceiling. Rilo Kiley sounded great. But I still don't know what they look like.

Because we're out after work and the band don't come on until 9.30pm, we're forced to eat at one of those Chinese buffet places. It was that or pay through the nose for Islington designer food. I knew I could be paying through an entirely different part of my body but I took the risk.

Tuesday - the risk didn't pay off. I'm not laid low by my stomach, but it certainly drags me down and wears me out. Plus after four months of constantly moving from diarhorrea to constipation and back again, my bum just plain hurts. I'm beginning to worry I have developed piles. The side effect that dares not speak it's name. Great...

Work drags but is busy so I motor through it. Wednesday passes similarly and I get more exhausted as the week wears on. I'm letting myself lie in in the mornings but on Thursday I have an external meeting with a prospect. So I spend three hours Wednesday night doing the presentation and go in for 9am Thursday ready to go. Unfortunately ninety minutes later I find myself having to cancel the meeting at very short notice because two colleagues of mine let me down despite me triple confirming their availability. Normally I'd be happy to carry a meeting solo but I cannot do it right now and need company. Someone to pick up the thread if I lose it. Plus the guy we were meant to be meeting has already met me, so I'd be nothing new...

The prospect doesn't mind too much - he's off on holiday tomorrow and could do with being freed up. But it's grossly unprofessional and I'm really pissed off. I realise that I'm mostly pissed off because I worked until midnight the night before on getting the work ready. I do not need to work until midnight when it's unnecessary at the moment. I can do without that.

This makes me so angry and upset most of Thursday is spent in wasted energy feeling frustrated and let down. I leave early feeling shit and go straight to bed for a couple of hours.

When Friday morning arrives I've caught up on sleep but have a slight temperature. So I stay home and work on stuff from the sofa. We leave London at five thirty for Hereford and I feel a lot better - but still end up sleeping for England overnight. Saturday and Sunday are an improvement. No temperature. We see an old travelling buddy on Saturday night at a chilled-outl, rural-bohemian party where we end up giving advice to a professional clown about driving to Timbuctou. Sunday brings a day out on the banks of the Wye with some friends of R's who are emigrating to New Zealand soon. For a moment I start to feel normal, and it feels like the whole permanent watch-out for side-effects is once again behind me.

But today, after various chores, I drive myself back to London leaving R in Hereford to sort his kitchen before the fitter comes next week. I've felt tired and leaden all day, and take my temperature at 5pm out of curioisity. It's about 37 degrees. On the high side, but nothing to write to your doctor about.

By the time I reach Membury services it's at 37.6. At the traffic lights on the A316 at Richmond, it's 38 degrees.

I haven't taken it since getting into the flat. But I know it's high. I'm hoping to sleep it off and that I haven't picked up an infection from someone. Noone I recall talking to at either social event looked or sounded ill. R even cancelled seeing a friend of his on Friday because she sounded snotty on the phone.

Bugger bugger bugger. Off to bed to sweat it out...

Sunday, August 19, 2007

Not out of the woods yet

Every time I do this. Every time I have a chemo treatment I reach the Friday and think 'Oh, this isn't so bad'. Only to have it bite me in the arse again.

All weekend I have been unable to leave the house, my body feels weighted down with lead and my head feels full of fuzz. I can't think straight, I can't walk straight, I've been in a stupor for two days straight. My stomach is slightly sensitive but that seems to be the least of my worries. R has been out at work both days so I spend my days doing, I don't know what. I actually cannot remember how I've spent some of my time. I know I've blogged, and watched TV, and knitted, and eaten a few things. But I'm not sure in what order.

Last night R came home to find me in bed re-reading a paragraph of a new book again and again, with the oven going full blast in the kitchen.

Today I was planning to drive up to North London to visit a friend who recently had a baby. A bit of an excursion. Except at the last minute I cancelled. It's weird to say this but I don't trust myself at the moment. I can't seem to control my limbs on a walk to the kitchen, so god knows what damage I could do driving round the North Circular.

I think the Lorezepam is the only drug with a 'do not operate heavy machinery' warning on it, but I suspect the cocktail of everything else has combined to make me more of a liability than any of them individually. And I'm meant to be back in work tomorrow. I'm wondering whether it's a good idea. Raincheck in the morning... until then, pad the walls and make me wear a crash helmet. I'm a danger unto myself.

Saturday, August 18, 2007

The world's three smallest tattoos

Tuesday morning. Prior to chemo. Appointment with the radiotherapy team.

I get shown down to the basement, a new area to me. My realm thus far has included the waiting room on the ground floor, the Macmilland centre to book up those reflexology sessions, the first floor Day Care Centre where the dreaded chemo takes place, and the second floor where the Oncologists sit in their ivory towered offices, and the boardroom where I once attended a Look Good Feel Better class staffed by scary make-up salesgirls plastered in their own products. Beyond these areas, the building still holds some mysteries.

The basement is where all the radiotherapy machines are kept. I'm not sure if this is because the machinery is so heavy it cannot be supported on other floors, or if it's a temperature control thing. I know the place has to be cold to keep the machines working - maybe that's easier when based in the old cellars of a building? I must ask someone who knows.

I am met by a smiley young woman who takes me through my schedule. They have planned out my 30 appointments over the six weeks starting on the 10th September. Contrary to what I was led to expect, my appointment is not scheduled for the same time every day but varies. For the first few weeks it's all over the place - jumping from early morning slots to late afternoon. The later weeks seem to settle into a more or less regular mid-morning slot.

I'm not so bothered by the variety of daily times. Just the fact that I have them in my possession now, four weeks before my first treatment, means that I can plan my life. It's not that I'm anxious to cram everything in. It's more that I don't want to have to spend time re-arranging every appointment at the last minute, messing up other people's diaries in the process. Most people don't get their schedules until a week before treatment starts. I have pushed hard to bring my scheduling forward so that I can be armed with my schedule and avoid double booking myself in the first place.

I am then left to wait for the CT scan room to become ready for me. When they are, the temperature of the room is the first thing that hits me. It's true about the coldness in these places. The assistant apologises because the temperature means she also has icy hands, which will shortly be manhandling me into position on the large, very cold-looking, radiotherapy back-board that lies in wait.

I strip my top half off and lie down on the board. It's not that bad once you seal skin on metal but then I have to put my arms up behind me in to the supports so that they can centre my body. The assistant starts to draw on me with a pen. She then announces that her colleague is in the room. A new face peers at me around my peripheral vision and says hello. It is weird being immobile and not being able to see people creep up on you.

The board I am lying on is designed to slide in and out of a huge doughnut shaped machine which is the CT scanner. They raise me up and down until they can see a clear passage and then slowly inch me closer to the centre of the machine. There are three red laser beams emanating from the central ring of the doughnut, and it is these they need to line me up with. One of them lifts my hips slightly and swivels me. The other inches an arm up a little higher. I feel like a very heavy, very cold rag doll and my right arm is starting to feel a little numb. Eventually they get me so close to the hard edges of the CT scanner doughnut hole that my left arm is in contact with the beige plastic.

Eventually they are satisfied with my position and place some little stickers on strategic points of my body ready for the CT scan to pick up. In my media-advertising-TV-production head this is akin to donning the ping pong ball motion suit they may actors wear when filming using CGI techniques. Not that my breast is about to star in the next Lords of the Rings style epic, but you never know.

Then they leave the room and tell me to relax and stay still for the scan, but that they are only the other side of the screen and can hear me if I need to call out to them.

I am suddenly relaxed. It is silent with the hum of machinery. Then all of a sudden a massive whir starts up. The donut shape supports a circular piece of machinery which is now winding itself up into a great centrifugal whir. The noise and activity is suddenly a little scary and industrial but after 30 seconds I get used to it. The board starts moving me in and out of this blur of circling machinery, apparently of it's own accord, but obviously based on their operations behind the screen, inching me forward into those previously marked positions. Except on the last one they barely stop in time and my left arm is slightly squished against the hard moulding of the machine. Not so much that it hurts, just enough to have me almost cry out for them to stop.

They come back in and pull me out of my hole. They take off the stickers and then come back with a small needle and some ink to tattoo the points of alignment into me. I get one tiny prick either side of each boob, and one just between the two. I was told the ink would be black. It's blue. I seem destined to have blue tits one way or the other.

Then it's time to unravel myself from my position, rub some warmth into my limbs and put my clothes back on. Next session will be a check of all of this - a verification of the plan - followed by the rads proper when they start on the 10th Sep.

Before then I need to go and finish chemo (now accomplished, but for a few lingering side-effects) and then go see a man about removing a portocath.

Later that day I make my way home, stopping to try on a top in Monsoon at Waterloo. I forget momentarily what I've been up to and catch sight of my doodled-on body in the changing room mirror.

Emerging for the last time


Friday's post-chemo have been my foggiest, fuzziest days on the last few treatments. The nebulousness slowly starts to clear at the weekend and doesn't really go properly until the middle of the following week. This is exacerbated by taking lorezepam to sleep at night, but then, it helps me sleep at night.

So today is Saturday and I can feel my head clearing slightly. The brain-sluggishness is easing. Over the last three days I've struggled to answer R with coherent sentences, let alone when I have to make the odd call for work or send an email - I'm crippled by dopey-headedness, the sheer inability to remember words or phrases or names, a paralysis of logical thought.

But it's clearing, and I know it's for the last time which is just a fantastic sensation. In fact, Chemo no Six has been so much easier than the last two (through which I struggled and vomited and grizzled) mainly because I Know It Is The Last Time.

It also helped that because I'd been sick on the last two, despite the upping of my steroids designed to stop this, my oncologist gave me some new wonder anti-emetic drug for this occasion. Called Emend, it's another steroid based drug and is apparently new onto the chemo market... You take one an hour before chemo, and then one more on the two consecutive mornings following treatment.

Well, it worked for me - I have not thrown up this time. I felt nauseous at the hospital but the domperidone I'd swallowed with breakfast, followed by the Emend an hour before chemo, coupled with the distractions of being measured up for radiotherapy and tattooed, meant the bile stayed down. But the increased fuzziness I've felt with with this treatment is probably a result of the additional steroids from the Emend. But hey, it's just this once... and it's virtually over now. Another two and half weeks and all the toxins will be gone from my system.

It might take the superficial symptoms a while to disappear (baldness etc) but my body is even starting on that. It seems the battle between my last chemo and my last remaining hair may have been decided already. I have the tiniest baby shadow of growth that is emerging on my scalp. It started a few days before the last chemo, when my scalp started hurting in a way which I haven't felt since my hair started falling out back in May, but sure enough, close inspection revealed very tiny soft hairs pushing their way through my scalp.

My oncologist acknowldged that sometimes hair regrowth starts before the treatment ends. Noone knows why. But she reckoned it would be unlikely to fall out at this stage and that this probably constitutes the beginnings of my new hair. It's so short noone else claims to be able to see it, but I know it's there, and more importantly, growing, so it makes me happy.

It was weird saying goodbye to my oncologist. I get to see her again in two months time, after the rads have finished, but otherwise that's probably it. I felt like I would miss her, at the same time as feeling huge relief to be saying goodbye to her for a significant period of time. I told her this, apologetically, as I was leaving her office.

"That's okay" she said, "A lot of people feel ambivalent about me".

What must that be like for her? A permanent love-hate relationship with all her clients.

Thursday, August 16, 2007

Naked Rodeo

I have decided that it's high time the walls in my house got covered in pictures.

Over the last two months I've acquired three big African themed prints (you can see what my subconscious is still harking after). A big antique map of africa, and two Victorian explorer pen and ink illustrations of exotic animals - one of a giraffe and zebra and one of a rhino and elephant. They'll do for the sitting room. The hallway is destined for family and travel shots of my own.

Then I have a space in the bathroom that may work quite well with this:



It's a photograph done by my artist uncle. It's unlike most of his work as he tends to use a lot of darker or more vibrant colours, but I like this one's washed out brightness for an area like the bathroom. It feels very clean, which is what you should feel in a bathroom.

Or there's this:



Called Rodeo, it sums up so many things about his own themes throughout art. Lots of long haired naked women and horses. It also reminds me of growing up riding ponies (less the nudity, more the constantly getting bucked off) so I like for those reasons. I remember when I last saw Sander, he came to visit my parents house and I was passing. And we spent an evening looking at his portfolio and this was the image that really jumped out at me.

If I get Rodeo, it would probably go in my bedroom or the kitchen.

I can't decide. I've emailed him to find out how much a really dramatically sized print would be but smaller prints are very reasonable if you like his style.

His site is at Sander de Boer if anyone fancies a peek.

Hmm, naked rodeo in the bedroom? Maybe that's subliminal thinking at work...

Easily distracted...

Just been catching up on a friend's blog and managed to get distracted into this:



One of the rather more intelligent and interesting personality tests I've come across.

And that's me. A Benevolent Inventor. Or at least, when I'm not being distracted by the internet...

The Last Time


This should be the last time.

The last waves of anticipatory nausea before any drugs get anywhere near me.

The last determined plunge of a Huber needle into my portocath.

The last time I have to look away whilst K, the kiwi nurse, pushes the raspberry red epirubicin into my main vein.

The last time I have to walk my drip to the loo because I just cannot take in all that liquid AND keep drinking all that water that should help me dilute the toxins for my stomach.

The last time I forget yet again that when I turn around to flush the loo my pee will look bright red. I never did get used to that.

The last time I have to press down on the bridge of my nose to stop the unbearable sinus tickle that the cyclophosphamide causes.

The last time I have to navigate my way home through public transport, feeling very fuzzy and a little out of step with the rest of the world.

The last time I spent the following three or four days in a stupor, monged out on the sofa.

The last time my hair is killed off at the roots before it has a chance to grow (Oh how I will welcome you back, hair - I'll even take pride in hairy legs just because of the novelty... at least for a while).

The last time I have to avoid ordering takeaway food, or seafood or fish in restaurants, or raw fish (i.e. sushi) or rare steak, rare lamb, rare anything non-vegetable, or eating brie, or blue cheese in salads, or eating natural yoghurt (but I break that law at least 3 times a cycle and get away with it most of the time).

This SHOULD be the last time.

Or at least, lets hope so. I guess you never know. But my chances of it not coming back are better than most of the women I sit next to during treatment. So I am keen to celebrate these moments of passage through my treatment.

And the euphoria that comes with that has overcome any nausea I've been feeling. I've not been sick, and I've managed to accomplis a lot today despite the mong setting in. The pschological boost that comes with knowing I should never have to do this again, at least not for many, many years, is fantastic (lets face it, even if breast cancer does not return there are many other cancers out there that get you when you're old, young, or just not looking).

Stage 2 complete. Stage 3 should be a breeze by comparison.

Tuesday, August 14, 2007

Flying Solo

Bollocks.

It's 8.41 and R is not even yet at Cirencester and picking him up and still making chemo is becoming completely undoable.

His lazy-arse of a colleague, combined with the weather and the traffic, have conspired to leave me flying solo today.

I hate doing this by myself. It's pathetic I know but having R there means he successfully distracts me with really bad jokes just as they're doing key manoueuvres with needles and drugs. When he told me on the phone I thought nothing off it and then five minutes later found myself panicking. I considered phoning a friend who I know is twiddling her thumbs at work at the moment and might be able to spare a couple of hours today. But then I remembered. She hates needles and almost faints when I tell her all the gory details.

I hate feeling this pathetic about procedures. It undermines my own air-brushed image of myself.

Ah well, I just have to keep myself in that state of denial a little longer. Focus on the boob tattoo, and the 3-D model. That's all I'm heading into town for right?

Still haven't felt sick and that's a plus. Altho I did swallow two Domperidone with breakfast...

Running late despite being early

In a complicated manoueuvre this morning, I was due to drive 45 mins away to pick up R at 8.30am who was being dropped off by a courier collegue in one of the trucks. They would have been aiming to leave Hereford, loaded, by 5.30am at the latest to make it on time.

However, when my alarm went off at 6.15 I already had a text from him. The guy driving him had apparently slept through his alarm and been an hour late to work. They were still loading the truck in Leominster. R would not be at the meeting point now until at least 9.30am.

My appointment for the whole breast modelling thing is at 10.45am.

If I make it I'll be a genius, and London Transport will be uncharacteristically reliable. But it's unlikely and I've resigned myself to having to ring them from the A3 at 9.45am to plead mitigating circumstances and reschedule.

It's not R's fault. I phoned him and he was clearly frustrated, muttering curses about his lazy colleague whilst he was safely out of earshot.

It's just really annoying...I've been juggling so many balls over the last few days but this is not the one I wanted to drop.

Shame it won't affect the chemo scheduled for later this morning.

And it's pouring with rain again. Harumph.

Monday, August 13, 2007

If today was a sound effect it would be...

"Aaaaaaaaarrrrrrrrrggggggghhhhhhh"

Time to leave the bleeding office, eat something, hoover, do the washing up, collapse into bed and get up at 6.30 to go and pick up R who is being dropped off somewhere round the bottom of the A3 before heading back home, getting on the train and going to Harley Street for the thing I'm meant to have forgotten about. AND I only seemed to get about five hours sleep last night. Upstairs were thumping around for hours, I had insomnia for the first time in ages, didn't fall sleep til gone two and woke up again at five.

Jesus.

Days like today really should be banned. But I have succeeded in accomplishing an inhuman amount of work.

To the tune of Partridge in a Pear Tree, sing with me now...

Four creative routes, three presentations, two case studies, and a tu-tor-i-al in home ed-it-ing...

Periodwatch


Just like to signpost what this particular entry will focus on, so that those who are squeamish can look away now.

My penultimate period came two weeks later than due, on Friday, June 29th. Which makes the time between my first period on chemo and my second period on chemo approximately six weeks.

Spookily, another six weeks later, it arrives again (last Thursday, 9th August).

It seems chemo just stretches my cycle, rather than stopping it altogether.

Last time it came I felt proud that I had neither yet vomited nor stopped my periods on chemo. As if it was proof of my resilience and strength. Since then I've managed to blot my no-nausea record, but my period stubbornly returns.

I might have preferred it the other way around, actually...

International Espionage


I found out last week that when you're undergoing chemo treatment, you can claim back the congestion charge on the days of your appointments. Can't believe I've only discovered this now, just before the last one.

It's because your "immunity is compromised" according to the Macmillan pamphlet, so they appreciate you don't want to travel on the filth that passed for London Transport.

I just love that phrase. It makes me feel like a spy.

"M, my immunity has been compromised. I need to self-destruct in 5 seconds".

Once more into the breach


Stiffen the sinews, summon up the blood, for it's Chemo no 6 on Tuesday. My last one, ever, I hope.

In the meantime I have to get through a mountain of work and I have the 3-D breast modelling appointment on the Tues morning before my chemo actually starts. All of this is doing quite a good job of distracting me from feeling too icky right now.

Since being sick after no 4, my body has started anticipating the treatment with barely controllable waves of nausea - last time it started a few hours before I was due in. But over the last three weeks it's happened whenever I've thought back to moments I found hard last time - when I'd smell some antiseptic, or if I caught a glimpse of the nurse pushing in the red stuff in the large hypodermic. Or whenever I've thought forward to my next treatment.

So I've been trying not to think about it, but it's hard. Especially because everyone keeps reminding me "It's your last one - are you looking forward to it?".

I mean, that's like asking someone if they're looking forward to having a filling. It may stop the toothache in the long run but the experience itself isn't going to be much fun.

So I'm busy kidding myself that Tuesday is just about radiotherapy and maybe that way I'll forget about it and won't actually feel sick until the actual treatment is upon me.

"Oh" said Anne-Marie as she watched the nurse plunge some of those nasty toxins into her body, "I forgot I was having this today".

Fat chance. I bet I'll be cracking upon the Domperidone first thing Tuesday morning, if not before.

Now set the teeth and stretch the nostril wide,
Hold hard the breath and bend up every spirit
To his, or her, full height...

Thursday, August 09, 2007

Then and Now

Jesus. In reviewing my now very out of date profile photo and looking at some of the options I had lying around on my desktop, I found a photo of me the day after I first shaved my head. So the hair loss had begun in earnest, but it was mid May and almost three months have passed.

That was me then:


Look at me now.


I knew I'd lost more hair, but I hadn't realised quite how much more. It feels like I am growing more featureless every day, I'm fading away. Except for the cheeks. They are getting chubbier. I am starting to remind myself of Matt Lucas. Spot the difference.


I'll stop winging about it soon. I know most chemo patients who lose their hair, lose it all in one shot early on in the process and have to do the Matt Lucas thing for a lot longer than I'm facing it. But it's scary to suddenly realise that you can look in the mirror and not really notice the day-by-day effects of something like this.

Next thing you know, I'll wake up to find I'm significantly heavier than when I was a whippet-thin eighteen year old.

Imagine that!

My 3-D Breast to be

Met my radiotherapist this morning for the first time and had a long chat about the next stage, six weeks of daily appointments of radiotherapy, from Monday to Friday, to start four weeks after my last chemo.

I was originally scheduled to see her in early September, which felt far too close to actually kicking off with the appointments. If I'm going to have a fixed daily session being zapped, it would be kind of inconvenient to not know what time the appointment will be happening. I have STUFF appearing in my diary for September already and it's not that things cannot be changed, it just seems silly not to fix my appointment time now, and then I can ensure that everything else slots in around it.

Anyway, we talked about the treatment and the timing. I asked for a mid-morning or a mid-afternoon appointment, preferably the former. That way, I have more than half a day clear to fix meetings in, and can do the cycling to the hospital from the office plan - my hopeful recipe to get fit. Which will be more than necessary as my escapade falling down the stairs had meant I won't be doing anything more strenuous than hobbling from the kitchen to the sofa over the next five weeks...



Radiotherapy is (apparently, if I remember this right from our chat this morning) using waves of radiation in a localised area to attack and kill cells. Chemo effectively does the same thing, but around your whole body. Radiotherapy is designed to focus on the area you had the tumour (i.e. my right boob) and sweep up any remaining nasties. It kills normal healthy dna as well as any cancer cells, but the normal healthy dna can repair itself. It takes six hours for the healthy cells to repair themselves, hence the need to have appointments at 24 hr intervals. The dosages have been tested over the years, as well as the best 'spread', or fractioning of the dose, over time. And currently, the medical world believes that, for breast cancer, five weeks of doses on the whole boob, followed by one week of booster doses on the immediate surgery area, is the optimum combination.

So my life will be anchored in my daily zapping from Sep 10th until 26th October. 30 treatments in all. It feels well over time to move on to the next stage (so fed up with chemo now - I keep fantasising about skipping next week and moving straight to rads) but then the commitment to such a regime of treatmemt does feel rather daunting. Not because of a fear of side-effects (they should be much easier to handle than chemo side-effects) but because of the sheer volume of visits to the hospital. It will be very, very dull.

Slightly more excitingly, my boobs will be tattooed with tiny, freckle sized dots, so that the operators can line me up to the lasers. One dot in the centre of my cleavage, and one either side. The radiotherapist described the size of the mark as being 'like a dot on top of an i'. Which would have made perfect sense but for some reason I misunderstood and thought she meant a human 'eye' rather than the letter 'i'. Which left me momentarily imagining I would be tattooed with Masonic symbols.




But the most exciting part of this nasty zapping is that next week, I'll be repeatedly scanned on a CT unit so that they can re-create a 3D model of my breast on computer. How many people get their boob modelled in 3D for them? I hope they let me have a couple of print outs. They'd make great alternative pictures for the living room wall...

Here's an example I found earlier. This breast looks particularly pert. I wonder how mine will fare...

Wednesday, August 08, 2007

Makes you wonder what you could have had

Today I went back in to work. They paid for a cab in, and if I get my way, they'll pay for my cab home as well. Public transport should be doable tomorrow - when I don't have a massive backpack full of my laptop and books, plus a pillow for my leg to rest on, etc etc...

And today, whilst just sat at my desk wondering what was to come next in my little world of new business, I got two phone calls which put us on two pitch lists.

It's the sort of day I really like. It makes me look really great without actually having to do any work.

Well, I like to think that the groundwork I've been laying over the last two years has brought these people to our door, but who knows what led them there? Maybe they heard we had nice coffee... It's probably nothing to do with me after all.

But then it made me wonder. If I had decided to stay home today, they would have hit voicemail. Would they have left a message? We were a late entrant on one pitch, with the guy heading off on holiday tomorrow. So we would have missed out on that one at least.

Makes me wonder what else I've missed in the last four days off. Who knows?

Sometimes it pays to answer the phone...

Tuesday, August 07, 2007

Things that make you go... Ahhh


Completed this last week. Quite proud of my new knitting skills. And everyone that sees it goes Aaaaah.

It's for a friend's newborn baby who I haven't seen yet (only hope the poor child is not ginger otherwise it might clash).

But maybe I'll knit one in big size if it makes everyone coo so much. And I'll wear it. Lets see them go Aaaaah then. Probably be more like Aaaaargh.

It's amazing the difference a few consonants make.

Fighting a losing battle

Everyone I meet in the medical world of oncology is pleasantly surprise at how much hair I have left. Especially if they see me from behind. The back of my head is still quite thick with grade three stubble. Of course, it hasn't grown since I shaved it all off in May, but there is a lot of it still there.

The top and the sides however, are more scalp than hair. Not completely who-loves-ya-baby, snooker ball bald, but very, very, very sparse.

But elsewhere on my body I'm fighting a losing battle.

In the early weeks of treatment I was furiously paying attention to all the hairs on my body and 'testing' their resilience to the chemo by seeing if I could pull them out. But nothing seemed to be properly falling out other than the hair on my head hair and pubic hair. Even my leg hair, while I boast about not shaving for three weeks at a time, would still grow, just a lot, lot, slower than normal.

Only now, the peripheral hair loss has crept up on me. My arms are strangely smooth and I haven't noticed the faint shadow of facial hair on my upper lip for ages now. My leg hair, while still struggling to make an appearance about once every three weeks, is thin and faint where it used to be thick and resilient ater years of razors.

(This makes me sound like I am normally as hairy as an ape. I'm not. I'm just your average brunette doing the normal hair removal thing. Female readers will be nodding in empathy right now. The men out there may be slightly shocked, but I assure you boys, this is NORMAL. )

I'd also thought my eyebrows and eyelashes were safe from loss. They seemed to be holding on so strongly in the first two months that I reckoned I'd be ok. My initial tactic of dealing with the baldness was (Hat)+(More mascara and eyeliner than I'd normally get through in a month), but if I lost my eyelashes, how would that work?

For several weeks now my eyebrows look washed out and my eyelashes look increasingly absent. Looking up close in the mirror and you can see how the eyebrows have patches where there is more skin showing through than there should be. It ends up making my eyebrows look a little grey in tone from a distance, rather than dark brown.



As for the eyelashes, I permanently look like I've just come out of a good cry because the lack of lashes means the lids look puffy. Or just that you see more of them than normal. I'm not sure...

They look shorter, but I know all that's happened is they've thinned out considerably. On the lower lid, the lashes are further and further apart from eachother. I'm wearing make-up less and less because putting on mascara only accentuates these massive gaps between lashes. Plus, when they fall out, they fall out individually. Unless you have mascara on, in which case, I suspect they're more likely to fall out in small clumps.

And then, when going through my ablutions at the weekend I noticed that I am down to three solitary looking pubic hairs. Three? That seemed sadder and weirder than none at all, so I plucked the survivors out in a fit of pique (not so much plucked as eased out - they were clearly destined to go anyway) and am now bald as a baby down there. It's freaky. I hate catching sight of myself in the bathroom mirror. I now wear underwear in bed, not something I've done in a while.

So as I count the remaining hairs on my body and peer at my eyes to see if I have lost more of my brows and lashes, I wonder if the final treatment will finally beat me in terms of losing all my hair. Will my remaining eyelashes make it? Will my brows more or less hang on until they start growing back again in four weeks time?

Don't miss Anne-Marie's Remaining Hair vs Chemo, the Big Match. Live, via the web, over the next month.

Monday, August 06, 2007

Bouncey Bouncey

A misspent evening with my sister and two little brothers before K heads off around the world. We all seem to turn about five years old again once the trampoline is offered. Except I was hobbling on the sidelines.

Mainly just uploaded this to see if I could link youtube videos to the blog. And to annoy my sister who is concerned about her star jumps going public. But then again, she's not facing national shame on ITV.

And I embarrass myself enough throughout by cackling like an idiot.

Saturday, August 04, 2007

Humiliation in front of the nation


Now the shock, pain and novelty of the whole falling down the stairs thing has worn off, I'm left with a feeling of impending humiliation.

I'm going to be on national TV. The ITV cameraman was filming me for a show called London Ambulance.

It airs prime-time, ITV1 on a Friday night.

Oh shit. When I consented to filming it felt like a side-issue. I was busy being in a lot of pain and the surreal request to be filmed felt like the last thing I cared about, so why not? I had also assumed it would probably be some filler TV for some little heard of digital channel way up in the hundreds. Not a mainstream, terrestrial TV station at 8 o'clock on a Friday night!

I will let it go out. Mainly because it's the only way I'm going to get to see it and I'm quite morbidly fascinated with how I will come across on camera.

I know I will hate watching myself. Not least because it's excruciating seeeing yourself on camera normally but when you're bald, make-up less, teary-eyed, screaming like a baby, but trying to make cocky cancer victim jokes to keep up appearances, it's going to be really hard. I'm going to be hiding behind the sofa.

Also, after all the screaming and pain and swearing and tears, I will have to suffer the humiliation of having the subtitles appear:
"Later that day, St Thomas's A&E confirmed that Anne-Marie's ankle was only badly sprained and not broken after all"

Do you think they'll add more titles on the next screen:
"And later that day, Anne-Marie realised what a big girl's blouse she was"

So it's partly the humiliation of looking like a wimp in front of people who know me. But it's also the fear of looking like someone I'm not, in terms of what the cancer had made me into, temporarily or otherwise. Physically - the hair, the extra weight - and mentally - the jokes, the plucky cancer banter. I am not that person. That person has been foisted upon me. Unfortunately though, that person has been captured on film.

It's on later this month. I find out exactly when a bit nearer the time.

Oh me, oh my...

Friday, August 03, 2007

A false alarm


After the worry instilled in me by a casualty doctor telling me there was a shadow on my x-ray that 'with my history' needed checking out, I chased my GP to chase the radiography department at St Thomas's to get a specialist's opinion.

She was very understanding and got on the phone straight away. She spoke to the radiography results people, they said there was nothing unusual about my x-ray. She insisted on speaking to the chief radiiographer who repeated this news. She explained what the doctor had told me. He expressed surprise that the doctor could have seen any shadowy shape on the bone. There was none there.

Maybe he was a junior doctor. Maybe it was his first day in that job. Maybe he just got over enthusiastic with his detective work because I had a bald head clearly signifying a pre-existing condition.

It was the day the NHS start all their new doctors (hence the confusion on A&E and the delays in me being seen) so all of the above is entirely possible.

Either way my initial reaction was obviously one of relief.

Then I got a little pissed off.

I got really worried for a moment and memories of my initial diagnosis came flooding back. The feeling of getting bad news that changes your life is not a nice one, and I'd efficiently buried it along with first day at school, being dumped by ex-boyfriends and other bad memories.

How dare some over zealous idiot doctor get me all wound up?

Then again, I don't have cancer of the ankle. So I can't complain too much...

Thursday, August 02, 2007

A fallen woman

A while ago I joked with Steve that I was in no danger of fainting a la Dina, the guardian journo who got breast cancer and wrote about it, both in her column and a book. She fainted whilst ascending stairs, during her chemo treatment, when basically trying to juggle life, the universe and everything.

Ha! Thought I, that would never happen to me.

One, I'm on an easier chemo than she was. Mine is meant to be, broadly speaking, manageable. And certainly for the first three treatments it was. It was only over the last two I've really been feeling it.

Two, if I feel faint, I'll just have a nice little sit down and a glass of water. Simple. Although that does depend on getting a warning shot before I go down.

Three, well, three would be that old belief that It Simply Would Not Happen To Me.

Hmmm.

Lets replay this week briefly.

Monday - wake up feeling awful and short on sleep because whatever I ate Sunday made me spend three hours running backwards and forwards to the loo during the night. Weak, kidney pains, aching, I stayed at home. Good call. Spent the afternoon asleep in bed and felt much better that evening.

Tuesday - wake up (slowly), go to work, feel alrightish. But by the time I come home that evening I'm exhausted again. Whatever energy reserves I've built up by spending Monday at home and in bed are once again depleted. Plus the mushroom risotto I chose off the menu at lunchtime as the plainest dish on the card has made my stomach the size of a full term pregnancy. Once again, food has proven a minefield and in avoiding the seafood I've shot myself in the foot with the porcini. I'm so tired I can barely lift my arms to poach an egg on toast for dinner. Collapse into bed, cry for a bit from sheer frustration (why is there one more left? why is it not just OVER?) and then sleep soundly, but dream of the office, set in a schoolroom, like some sort of parent's evening. It's coming off the Lorezapam that does it - I'd only taken half a pill rather than the usual full mg.

Today, Wednesday. Get up (very slowly). Feel rubbish so have a bath to go gently on the morning routine. Club my stuff together and get on the bike to ride in. Arrive feeling exhausted just by the 40 min bike ride. When I walk in the door my phone goes. It's my Dad wondering if I've fainted and tried to call him but am unable to speak because all he can hear is rustling. I reassure him that I've merely left my phone off lock and hang up. For some reason, am suddenly terribly emotional again (I have a theory on this which I'll share in another post) and end up venting my tears and frustration at a colleague and friend for half an hour. Calm down, back to my desk, do some work, then go see the new Account Manager to say I'll meet her in the boardroom in five to take her through the agency credentials.

I grab the empty glass of water off my desk (still feeling dehydrated) and walk downstairs with my notebook and a copy of our reel. I'm wearing flat shoes. I feel shit, but shit normal.

Somewhere, probably three or four steps from the bottom of our trendy metal industrial stairs, I black out momentarily. Next thing I know the trendy concrete flooring is rushing up to greet me, the glass flying out of my hands and smashing into a thousand pieces.

Oh shit.

And I feel sick with the pain. My ankles have taken the brunt of the fall and I'm on the floor, curling into a ball and clutching my face. Not sure why I was clutching my face, I think in retrospect it was the need to hold onto something, tightly, as everything from my knees down was hurting so much.

Later, my colleagues tell me they thought I was clutching at my face because I'd lacerated it with the glass and was busy 'stemming' the flow of the blood. As it turns out, the only cut I have is on the inside of my elbow and is tiny. Miniscule. But still it managed to stain my white linen shirt.

Back on the floor and it takes me an agonising five minutes before the so-much-pain-it-makes-you-feel-sick feeling passes and I bring my legs round in front of me. Neither ankle feels like it wants to move yet. All i can think is, if I've broken it/them, I'm buggered. My bone marrow won't regenerate under chemo like it would do normally. Shit, bugger, shit again.

I raise myself with my colleague's help into a chair and lift my legs onto another one they place in front of me. I'm still feeling a bit sick and light-headed but that feeling is passing. I wiggle my left ankle gingerly. That works. It feels weird, like I'm doing it for the first time and none of the nerves are well-rehearsed in the brain-ankle conspiracy of movement, but it works.

I try doing the same with the right one. Nothing but pain. No movement, just shooting pain from the centre of my ankle halfway up my calf. Someone gives me a frozen bottle of water wrapped in a tea towel to lay against my ankles and we decide to call an ambulance.

In the next fifteen minutes it takes for the paramedic to arrive, the pain gets so bad I am squealing with every wave that shoots up my leg. They are frequent and now reach over my knee. At one point I start to shake. My pain threshold is normally quite high so I'm really worried now. This must be a fracture, surely? A sprain would not hurt this much? The left ankle gets increasingly mobile as I sit there, the right one starts to hurt more and more. Funny, could have sworn that when I was lying on the ground immediately after it had happened that my left one felt in more pain.

The paramedic turns up. Surreally, he has a cameraman with him. "Do you mind if you're filmed for ITV?". No, not particularly. I've lost all sense of the personal when it comes to medical treatment over the last four months, so a camera filming when I'm in agony, with a bald head, tears in my eyes and curses on my breath is not going to make any odds.

I tell the paramedic that I know some of his colleagues, two paramedicas we've met on banger rallies. So he'd best behave. He's lovely though. Keeps offering me morphine, and gas. I decline, as the two ibuprofen he's let me take are kicking in quite nicely and the searing pain is being gently subdued. Plus morphine and gas both make you nauseous and the memory of vomiting on the last chemo is too recent.

He radios for an ambulance (he came on a pushbike - it's a London summer thing) and two new paramedics take over. I've never been in an ambulance before and suddenly, with the pain now stable, the novelty of the experience takes over for a minute and I phone Rich, we work out a plan (he gives up cleaning the house for the day, gets into town, picks up the motorbike and will come and meet me at the hospital) and I get driven to St Thomas' A&E.

At the hospital, hours pass, I get cold, I get hot. I negotiate some crutches so I can take myself to the loo. No commode for me. I listen to mad old ladies the other side of the curtain and strange groans coming from the curtain opposite. Usual hospital stuff. Just much more graphic and dark than the private healthcare experience.



I chant at every single person that picks up my chart, in an almost religious way, "I'm on chemo, my last treatment was last week, my blood counts will be low, you cannot use my right arm for bloods or pressure or anything because I've had partial node removal, if you need to do anything serious like stick a drip in, I have a portocath, and if you want to know what drugs I'm on I have it all written down just here...". They're nearly all different people (apart from the ones who are the same, of course...) so it feels pointless, but it's my mantra and I'm sticking to it.

I think, it would be just my luck to break my ankle (bone marrow problems) and then contract some infection from the hospital because I broke it when I was on days 7-10 of my cycle, when my immunity is at its lowest.



A nurse relents and lets me have a cup of tea. It's now 3pm and I've not eaten since breakfast. She agrees that it's either a bad sprain or a simple break, as my foot is not blue or hanging off at a rakish angle. The nurse brings me a cheese sandwich - which is nice of her but makes me feel sick again. Not sure if it's nausea from the pain of the ankle, or associated nausea because of the smell of hospital equipment or the smell of hospital sandwiches (all things I associate with chemo and have resulted, last time, in strong feelings of anticipatory nausea - I can't even tell people about how i had to banish R to the other side of the chemo day care ward to eat the chicken sandwiches last time before getting a wave of bile rising at the mere thought of it...).

Then Rich arrives and I commandeer him to get me some biscuits. Ginger nuts are brilliant hospital food. All that sugar, and a bit of ginger to settle your stomach. Perfect.

Eventually I am seen by the doctor and then it all happens quite quickly. It's unlikely to be a break because i do not hit him when he touches it. But they x-ray just to be sure. Into radiography for my seventh and eighth x-rays of the year. He studies the x-rays and comes to see me.

The good news? It's just a really really bad sprain for which I am sent home with crutches, strong painkillers and instructions to elevate it and take it easier next time. To try and avoid blacking out in the first place, he might have added.

(In fact, this is a clear lesson in taking it easy and not being hard on myself. Stay at home more. Do nothing more. There is only one treatment left, there is no point in killing yourself over this. And if I was worried that others may think me a shirker, at least this is proof that maybe, just maybe, this chemo stuff is quite nasty and just because I look okay on the outside doesn't mean I'm feeling okay on the inside.)

But the not-yet-clear-what-it-is news? Some dark spot on the x-ray. The doctor assured me it looked nothing like a metastised cancer looked like, but there is a dark blob in my ankle bone. His money is on some benign cyst that I've probably had forever, but it's routine to check it out, and certainly with my medical history he wants a radiographer to look at it tomorrow and give his point of view.

It can't be mestatised. Can it? My lymphs were clear, my bloods were clear, my chest and lung x ray was clear pre lumpectomy. So I'm pretty sure I'm ok in that respect.

But it's the way he looks at me that upsets me. I recognise that look, and it brings back scary diganosis memories. I'm so tired of it. I do not want another member of the medical profession to look me in the eye with sympathy. Ever again. I've had enough of that.

In the meantime I have to wait for them to check the films and then call my GP for an appointment at the end of the week to find out what's what. Do I have a cyst? Or do I have some weird cancer of the ankle? Or did someone just smudge the films?

R keeps telling me it's nothing to worry about it. Which it isn't. But I am.

Lets face it, last time I was in a similar situation I was all confidence and "Ooh, 9 out of 10 are benign so it won't be me". And then it was me.

So it does worry me.

So there.

Total eclipse of the ultra-sound

Just realised whilst logging in and out with a mammoth post about to be uploaded that the shot of the solar eclipse I included with the last post looks rather like my tumour did on the ultrasound.

Ah, sweet memories.