Monday, December 31, 2007

Lymphomaniac

So the Friday before Christmas, ten days ago, I was carrying home a load of stuff from the office and a load of food and wine I'd bought to see us through that evening (we were having some friends over for the first dinner at mine after having finally spring cleaned the flat post-chemo and made it reasonably presentable again).

The next day, I had a pain in my upper right arm. Not bad, just like I'd over-stretched the muscle and it hurt to extend the arm fully. It reminded me of the feeling I had immediately post-op, when I had a bit of 'cording', when your muscles take time to get back to normal after they've just sliced through them...

The next day, the Sunday before Christmas, the pain had gone on my inner upper arm, but I had a new soreness around the base of my shoulder blade. I only noticed it when lying down in bed - I found it painful to turn onto my right side.

This feeling reminded me of the swelling I got post-op, the seromas which would form when my lymphatic fluid would not drain as well as before, while my nodes were 'readjusting'. This had to be aspirated (drained) with a massive syringe. Pleasant...

I thought about what it could be, then I dismissed it. It was two days before Christmas, I was miles from my normal doctors, and I was not in any real pain. Any, when I was on chemo, I would get this feeling intermittently when I was run down or tired and it would be gone within a couple of days. I thought these were still seromas, my breast surgeon reckoned it was nerve damage. Whatever.

Now, ten days on from when I first felt the pain, it's still there. It's tender to pressure, so I only feel it when I touch it or when I am in bed lying on it. It's not got any worse but then again, it doesn't seem to be going away either...

Knowing what I know about what I am prone to, post-op, post lymph node removal, I suspect it's mild arm lymphadema. An incurable condition that you can just take preventative action and palliative care treatments for. And could result in me developing a massively swollen fat right arm. Great.

Apparently 45% of breast cancer sufferers get it at some point, to some degree. I had hoped that I would not be one of them.

Bugger.

Boobs everywhere you look

Spotted in Amsterdam

Double dutch

The other day I decided to update my facebook status with the news that I was travelling to Holland.

And I thought, for a laugh, that I'd do it in dutch.

Now there are two pieces of information you need to know.

The first is that my dutch is not good.

It used to be. I was brought up bilingual from birth and went to a dutch school for most of my life up until the age of ten. At ten, we left Germany (where the Dutch school was - don't ask) and returned to the UK. I was thrown into a school speaking the language that I was less confident in (English) and gradually started to assimilate into English culture, and I never really got the chance to 'do the Dutch thing' again, bar the odd visit to relatives.

So when I was ten I felt much more Dutch than English. Now I feel much more English as I haven't really spoken Dutch properly since then. So my grip on the language is very, very rusty. But I knew enough to come up with a simple status update:

Anne-Marie gaat vandaag naar Holland.

Or, Anne-Marie is going to Holland today.

The second bit of information you need to know is that my brother and I have always been fiercely competitive. And he also went through the whole being fluent in Dutch thing before having to switch allegiances and become English overnight. But the competitiveness means that when we are together in a Dutch environment, he sometimes tries to 'out-Dutch' me.

So when I posted a status update in Dutch, he responded with a message on my 'wall' in Dutch.

En waarom gaat jij naar Holland vandaag...?

And why are you going to Holland today?

All perfectly making sense so far. So I answered him.

Want wij willen Oma opzoeken, en ook een vriend van Rich's die in Utrecht leeft. Hoe is het in Whistler?

I replied saying that we wanted to visit my Grandmother, and also a friend of R's who lives in Utrecht. He's in Whistler right now so I also asked him how it was going there. Now, I had to struggle to put this together in my head but got there myself (however I'm not sure it's even 100% right anyway). But I'd clearly thrown down the gauntlet because suddenly I get a far more complex reply and I'm stumped. I don't understand half of it.

Then I read again, more slowly, and realise what's happened. It's a little complex to spell it all out but I have one reader who will appreciate this (Judith...?).

De sneeuw was verbazend - de toevlucht moet de eerste minister in de wereld zijn! Maar 6 uren op de sneeuw waren genoeg niettemin voor me. Zeg hallo aan Oma en Holland van me en horloge uit voor haar het snelle drijven!! Zo snel!!! Txx Oh en ook hallo aan jouw en Rich van mij en Courtney!!

Translating it, chunk by chunk, reveals quite why my brother is suddenly able to produce a chunk of complex, descriptive Dutch text, and the revelation made me laugh. A lot.

The snow was amazing - this refuge must be the prime minister of the world! But six hours on the snow was enough even for me. Say hello to Oma and Holland from me and wristwatch out for her fast driving! So fast! Oh, and also hello to you and and Rich from me and Courtney.

So brother of mine, you're busted. Stop using Babelfish!

"Horloge" means watch as in "wristwatch", not watch as in "watch out". And by "toevlucht" I think he must have meant "resort", as in tourist resort (not resort as in a refuge, or last resort). And prime minister? I think he must have meant "premiere" as in best, not as in a leading political role...

Well, it made me giggle.

Thursday, December 27, 2007

Grrrr.... dial-up

I hate dial=up. It sucks the life out of you.

It nearly had R throwing his computer out of the window this morning as he tried to download and print route maps for our upcoming trip to Holland. And he's generally a very patient man when it comes to machinery.

If it wasn't for being stuck on dial-up over the festive period I'd be blogging more.

There. That's my excuse and I'm sticking to it...

Wednesday, December 26, 2007

My favourite present this year


Christmas marked the 9 month anniversary of finding the lump. So this year has been utterly dominated by cancer, whichever way I look at it.

So my favourite present this year was suitably cancer themed. It was a book I'd heard of - a graphic novel written by a New Yorker cartoonist or graphic artist who'd been diagnosed a few years ago. It sounded sassy and intelligent and a very personal account of a similar experience.

And it's called Cancer Vixen - a title I love.

If you know any woman who is young and has just been diagnosed or has ever had breast cancer, I highly recommend you get her a copy. My friend Chantal gave me mine. And she was (very sweetly) incredibly nervous about giving it to me. She was afraid it might not be welcomed, because it was about cancer.

Believe me, when you have had cancer, everything sort of becomes about cancer. Your world has a new point around which to turn, you have a new centre of gravity. I may be getting back to normal now, but it's a different kind of normal. It's more about learning what the new normal is post-cancer.

So cancer never goes away, and can never remain hidden for long. Yet people are nervous about bringing it up and drawing attention to it.

So if you're worried about how to react to a friend who has cancer, don't tiptoe around the subject. Buy them the subversive cross stitch 'Fuck Cancer' embroidery kit, or get them a copy of Cancer Vixen, or get them a Pull My Hair T-shirt for when their hair falls out and attack feels like the best form of defence. Meet the bastard disease head on, and with humour.

Believe me, they will love you for it.

Home for Christmas

So we left London on Saturday and drove West, having missed the traffic jams of Friday when the world and his wife were trying to leave town. We've holed up up in Hereford for the Christmas season, with occasional forays over the border into Gloucestershire to visit my parents.

R actually worked Christmas Day (for which he received triple time - his favourite Christmas present, so yesterday saw me head to The Oaks, my parents house since 2002 (or it may have been 2001) and increasingly a place which feels like home*.

Christmas Day saw the usual indulgence of food and present giving. With two younger brothers who still count their presents up to compare scores it can get a little fraught at times.

As for the dogs, one of them loves it when you're unwrapping presents. He is the invariable optimist, convinced it's food, and comes over to stick his nose into your half unwrapped present to check. The other dog, of a more nervous disposition, hates the whole things and hides out in the kitchen.

This year my mother was sporting two corking black eyes. Last weekend she had been knocked into the air by one of the ponies when she was getting the horses in to be fed, and as she came down, her head connected with the gate post to break her fall. What with also having broken her ankle in three places last March (the same day I first felt the lump) and with my scars and chemo-chic short hair, we're sporting a few more battlewounds this year.

My sister called at 10am, to wish us all Happy Christmas. She'd spent the day on a beach and was just about to treat herself to a posh hotel dinner somewhere in Borneo. Sensible girl. My brother was somewhere in the snowy depths of Vancouver.

We had all agreed to prepare something 'Christmassy'. To 'do a turn'. Which felt like enforced jollity a week ago but was actually quite a nice way to cut through the orgiastic present unwrapping and Turkey stuffing... My brothers performed carols - one on the flute and one on a guitar with the amp turned up high (not at the same time as eachother). My Dad suddenly remembered how to play the recorder. MY mother read a Christmas story by Jeanette Winterson. And I? Non musical, unable to sing without inflicting pain, I had prepared a Christmas game. You had to gargle three Christmas songs each and get people to guess them. So everyone had a go, and when I had to gargle Band Aid's Do They Know It's Christmas, I got very wet indeed.

I sloped off back to Hereford to join R for the evening, with a plateful of Christmas dinner, lovingly put aside for him by my Mother. Aaah.

Family at Christmas is a very good thing indeed.



*Never having had a 'permanent' childhood home, what with being an Air Force brat and the family moving on every couple of years, my friends in adulthood don't really understand that for me, there is no childhood bedroom being 'kept' for me, Marie Celeste style, just the way it was when I left it for University. Nope, since I left home for University, my parents have lived in Sussex, Germany, Churchdown (Glos), The Leigh (Glos) and Cliffords Mesne (still in Glos, and where they are now). And that's reasonably static for them. In that time, I've lived in three different places in Scotland, a flat in Bath, a house in Reading, a flat in Turkey, a house in Brighton, a house in Surrey and six different flats in London. So, for me, my sense of 'home' is not based on anything permanent or 'geographical'. It's where my family is, where the dogs are, or where I sleep at night.

Friday, December 21, 2007

Getting to the last page


Today I went to a funeral.

It was the first funeral I've been too where the family left behind are not the grown children and grand children of the deceased, but a young family in their prime, probably wondering when all this is going to stop feeling so unreal. They never expected this to happen.

It was a humanist thing - no prayers, no singing, just personal memories and speeches and prose being read out by close family and friends. Much more intimate and accessible than any service I've ever seen that's been based in some sort of religion.

Our friend Chris told of his trip with Andy across Europe to Asia as part of the London Tashkent Rally that R took part in a few years back. The picture above is of them both, somewhere in Turkey. Andy is on the right. Chris described him as being like a big kid, happy to have a big map book of Europe and even happier to have got to the last page.

It left us feeling lots of things. But most of all, it left us feeling ever more like we need to get on and live our lives, the way we want to, sooner rather than later. Like Andy did.

Wednesday, December 19, 2007

An alternative Christmas

I know better now. I never plan too much for Christmas and New Year.

In previous years, putting too much effort into the planning of these events just heaped too much expectation on them. Come midnight, on New Year's Eve, I'd often be underwhelmed with the whole proceedings and resolve to simply stay in next year.

Then I discovered going away on old banger rallies for Christmas. Being on the road somewhere meant Christmas became just another day, only marked by what we didn't do.

We didn't eat Turkey, we ate canned ravioli heated over a camping gaz stove, or bought food from stalls of strange meats in Marrakesh.


We didn't decorate a tree. We decorated other people's cars with duct tape and silly hats.

We didn't stay gently tipsy all day, we drank hot tea from our car kettle and enjoyed it far more than a glass of fizz.

We didn't lose our temper with anyone, we found ourselves actually missing our families instead and phoned home to wish them a heartfelt Happy Christmas, rather than worrying about whether or not we could make it to lunch without an argument this year.

We didn't fester in a mound of presents, we hugged fellow travellers we'd only met a few days before and left it at that. (Well, maybe some of us used the seasonality to treat ourselves to a little light souvenir shopping in the souks of Morocco.)

And we didn't get ripped off on New year;s eve, we sat in the desert and watched fireworks thoughtfully brought along by a friendly pyromaniac.


I loved it.

But despite that, I find myself looking forward to this Christmas.

After everything that has happened this year, I am relishing the chance to spend Christmas and New Year with my family for once.

And the New Year sees us go to Holland, to visit a friend of Rich's and my family over there (my mother is Dutch and one of five children, my father is English and an only child; pretty much 95% of my living relatives are over there and I haven't seen any of them for eighteen months now).

So it really is a year for family. And I'm looking forward to that.

The irony is, my sister will be somewhere in the depths of Borneo. My brother will be in the snowy wilds of Canada. It seems that they have followed in my footsteps and deserted the family nest over Christmas.

I'll miss those two, sure enough. But I'm still looking forward to Christmas at home. With a family my size you can take two away and still be left with enough for a gathering.

And I'll be the only grown sibling spending Christmas with my two little brothers and my parents. I get to spoil the boys and in turn, be spoilt by my Mum and Dad. What's so dreadful about that?

Monday, December 17, 2007

Come over to the dark side

Me ten days ago in Barcelona with grey hair:


Me at work earlier today with dark brown hair:


The colour job at Jigami really worked. My hair is now a deep, dark brown. Not actually that much darker than it was before Chemo, but it feels like a real step change because over the last few months I've had bald, semi-bald, shaven and this grey regrowth. So there has always been some scalp showing through, or plenty of grey hair, to keep the colour from appearing too dark. So the crowning darkness it has created has taken a few days to get used to. But the grey has gone, and what's more, my hair has not fallen out! The gentleness of their 95% water dye has succeeded in more ways than one...

In fact, I was at a pre-Christmas drinks thing at a friend of the family's yesterday where a friend of my father announced that my hair was "Quite sexy actually... but also reminded him of David Milliband, MP".

Here is a picture of David Milliband from the BBC for those of you less familiar with our local politicos.


I can kind of see where he was coming from....

Thursday, December 13, 2007

Countdown to Christmas


Countdown to Christmas Eve, originally uploaded by Dutchdane.

I think I suddenly noticed this week that it's no longer early Autumn and Christmas is just around the corner.

I hate the consumerism of this season, but there is always a point in every run up where the christmas spirit suddenly hits me and I am enthused with the idea of baking spicy cakes and decorating trees and throwing snowballs.

Of course, the reality is that my ears freeze on the way to work (the hats are back out - my new hair is no longer enough protection against the cold) and I get stressed about present shopping.

The other night, in a cab headed through Oxford St, we came to a standstill because of the amount of human traffic thronging down the road, spreading across the pavements and spilling out way past the gutters, all carrying shopping bags and determined expressions.

But last night I grilled the immediate family for their wishlists. And today, on only two websites, I managed to find the lot. In fact, all but one present came from the mighty amazon.

The other website? Blame my mother. She wanted a new pair of brushing boots for her horse. It was an equestrian supplies website, which is just as well, as you don't get many saddlers in central London.

Monday, December 10, 2007

Goodbye Grey


On-No...A-Grey-Hair, originally uploaded by Danz in Tokyo.

I am fed up with the hair.

After having gone through a few weeks where I quite liked the shortness of it (although to me, this shortness is long compared to recent months) it's now got to a point where it's starting to exceed the gamine boy crop look. The increased length, combined with chemo's unruly curly legacy, means the bits behind my ears are starting to curl out and kick up at the sides.

They are not charming, girlish curls. They are salt and pepper swirls like the still damp wavy curls on lambs' legs soon after birth.

And the grey is more and more dominant, the longer it grows. I was not this grey before!

So, while there is not much point in cutting it yet as no hairdresser will have much to play with, I can take action on the colour front.

Chemicals are out, ammonia and peroxide not being nice things to give your hair when it's fresh out of the follicle post-chemo, and my regular hairdresser and another local salon both shake their heads sadly. They only use chemical dyes. But one of them recommends a gem of a place in London's seedy Soho. A new hairdressing salon called Jimagi, they are dedicated to natural and organic hair colours. I phone them up and instead of some bored sixteen year old on the other end of the phone I get an intelligent stylist who knows all about hair dye and has cut and coloured plenty of post chemo crops.

A lot of people come to us after chemo she says, I'm used to dealing with really, really short hair, and it's always greyer than they remember, and curly too.

Yes I say, That sounds familiar.

In my head, I'm mouthing I love you.

In my diary, there is an appointment for later this week.

Q&A


My unanswered questions were answered this morning by a very patient Professor Mokbel.

With Anne, the breast care nurse in attendance, he first attended to the physical side of things. My portocath removal scar had healed nicely. He'd nipped in the skin around the original insertion scar to neaten it up a bit, and he seemed pretty pleased with the results. Slice, slice on the stitches with a fresh scalpel blade and he was done.

Then I quizzed him.

Firstly about the fact that he has always spoken to me about my chances of recurrence within the context of a ten year period. I had guessed that it was probably because the data does not exist for predicting longer range recurrence statistics but could he give me a feel for what happens after ten years?

The absence of data is the thing that stops them giving an accurate prediction. If you think about it, such advances are made in medical treatment, plus the nature of cancer and individual tumours is changing all the time, that it is impossible to give an accurate forecast over too long a time period.

However, he was happy to discuss the possibilities and essentially it's all good. The biggest threat of recurrence comes within the first two years after diagnosis. These are all aggressive tumours like mine, grade 3. Although not all grade 3s recur. If you have an aggressive cancer recur within two years chances are it's really, really bad news. The type of bad news that killed Dina, for example.

Between two years and ten years the chances of recurrence are at a flat rate for each year. There is no more or less chance of you recurring earlier or later within that timeframe - if it's going to happen, it has equal chance of happening in year 3 or year 6 or year 10.

If you make it to Year 10 with no recurrence, you can give yourself a pat on the back. For although the chance of recurrence doesn't ever go away, there is very little incidence of aggressive cancers coming back after so long.

The few cases that do see recurrence of a cancer after 10 years are, in Professor Mokbel's view, patients whose bodies have learnt, somehow, to live in harmony with cancer. This sounded like a very romantic view, until I realised he was using it purely as a medical term. What he meant was that for some reason, the birth rate of cancer cells remained constant with their death rate, until, one day, because of a compromised immunity or other such problem, something prompts the cancer cells' birth rate to overtake their death rate and the cancer presents itself again.

I asked about lymph nodes, and whether there was any evidence to suggest that patients whose nodes were clear may yet have cancer cells marauding around their bodies. I got a look straight in the eye for this one. Yes, there is evidence, he said.

Essentially, about 20% of women with my sort of tumour with clear nodes, still have cancer cells apparent in the bloodstream after the tumour has been removed. This is why they recommend chemotherapy, to mop up those cells. The chemo will, alomg with radio, greatly improve their chances of avoiding recurrence. Mine stand at 96.2% for no recurrence within ten years.

So, if there was still a chance that I had some random cancer cells floating around, looking for a place to wreak havoc, would it be sensible to do a CT scan, MRI, blood test, whatever it takes to see if they are there.

No, said the Professor, for several reasons.

He explained that if some cancer cells had made it to the liver, lets say, and they had not been eradicated by the chemo, well, then there would be no more point in scanning now or in a year's time. If they have made it to an organ in this way, it would be stage 4 and therefore incurable. There would be no point in rushing headlong to meet it. At some point, the cancer would physically present itself and you would find out then.

Also, these types of treatment are generally damaging in their own right and are only recommended when the benefits for the patient far outweigh the risks. He cites reports and speculates that most people have no idea how harmful a CT scan is. Apparently they are equivalent to the same dose as 500 X-Rays. My right boob perks up at this comment. It has been inside the CT scanner. Not to mention under the radiation beam for radiotherapy for weeks on end. Poor boob.

The only non-damaging technique they use to establish if there might be cancer recurrence elsewhere within the body is the blood test. Which I will receive in March when it's time for my annual mammogram.

All this we talk about and more. He is a most patient man with me. At one point I apologise for trying to force him to explain the world of oncology to me in the space of five minutes, but somehow, he manages it, in terms I understand.

I leave feeling reassured that there are no other options at this stage, and more optimistic. If not about the odds per se, at least about the way I view them. I have wrestled with all the different scenarios, eliminated any remaining doubt, and the truth is simply this.

The doctors have done their best. Now it's up to me. And cancer. And a little bit of luck along the way.

Saturday, December 08, 2007

Picking a scab 'til it bleeds

I've had ten busy upbeat days since my ultrasounds came back clean and Professor Mokbel gave me the big post-treatment thumbs-up. I've had meetings, gone to dinner with friends, drank champagne on more than one occasion, lunched with colleagues, travelled to Barcelona and back again, and even had time to have a little operation somewhere in the middle of it all.

It has been ten days mainly filled with celebration. What I'm celebrating is the opening of a set of iron gates, in place since late March. I'm shedding the shackles of a constant cycle of treatment schedules, doctor's appointments and procedures.

But over the last two weeks, now the imminent dread of having breast cancer in my body is guaranteed to be behind me for now, I find myself picking at the scab of this disease and suddenly facing some really big questions.

And the funny thing is, where I was brimming over with emotion when in the midst of this disease and its treatment, I am feeling cool collected about these issues now. Having clear ultrasounds has given me the strength to tackle some issues head-on. Whilst I don't have any cancer, I have the courage to ask questions my cancer in a calm, measured way I've not yet experienced in myself when dealing with this disease.

One is a question I've wondered about but never had the guts to ask. Ever since diagnosis, the doctors have talked in terms of the threat of recurrence within ten years. I have a good, strong chance that it won't come back. A 96.2% chance in fact. Within ten years.

That caveat has haunted my peripheries. But I've never yet squared up to ask anyone what happens when you get to ten years. A yawning abyss where the odds are stacked against you? Or simply unchartered territory?

And what of kids? I didn't want them before cancer (at least, not then) and although I am reassured that it seems my fertility has come through this process relatively unscathed, I am still unsure, but feel myself leaning ever more to a position where I am actively determined not to have children. It sounds morbid, but how can it possibly be a responsible act, to bring a child into this world when you don't know what your chances are of being around in ten years time? Plus, if this thing is to recur, the most likely time period it will recur in is the two years immediately post-diagnosis. This rationale rotates through my mind perfectly calmly. I am not bitter, I just know increasingly that I would not want to do this, it would not be fair.

There are dark portents around as well, that bring me back down to earth after these few days of celebration.

This week, the office Christmas party affords me the opportunity to have some close chats with another colleague who has been off battling his own tumour over recent months. His situation and mine are wildly different medically speaking, but we share a very similar emotional experience. In a moment of anti-cancer vitriol, fuelled not least by the shots of sambuca that had just been handed round the table, he urges me not to trust my doctors, to push for all the tests I can even think of the names for, to make sure no cancer cell is left unturned.

His anger surprises me momentarily but makes me question the faith I have in the medical profession. I love and trust my doctors still, and I think they have absolute faith in the treatments they have prescribed me and the diagnoses they give with the information they have. But maybe, even in the cossetted land of private healthcare, they can't hand out MRI and bone scans like sweeties, so maybe I should push for more. After all, I was the one who first enquired about a portocath insertion. Maybe, if you don't ask, you don't get.

And I've been re-reading Dina Rabinovitch's book over the last week. I tell myself I'm just re-reading it because I first read it during the haze of chemo. But really, it's because she was diagnosed three years ago and died a few weeks ago. I'm scouring the pages for any similarities between our conditions. When she was given the all-clear post-treatment for her first cancer, was there any sign it would come back again so soon, and with such deadly voracity? I find no real answers, every tumour is so different. All I find is locks of my hair, trapped in the pages from when it fell out in chunks while I was first reading the book.

Finally, I come back to the UK late last night to find the news we've been dreading and the darkest cloud in this stormy rationalising yet.

A friend of ours has just died from metastistic melanomas.

Andy had a malignant melonoma removed six years ago - a dodgy mole to you or I - and was given the all clear after that procedure. Doctors check his skin for recurrence but there are no bone scans, blood tests, CTs or MRIs. They are only interested in the surface of his skin.

Then, a year ago, he finds a lump in his leg. The skin cancer has metastisized and over the last 12 months he has countless tumours removed from all over his body. We saw him in September. He was in a bad way, and deteriorated rapidly after this. He died at home on Friday.

I can't imagine what his wife and children can be going through and I am so angry at this disease which at best, makes old men and women of us, at worst, ruins families and leaves wives, husbands and children horribly alone. All Andy wanted over the last few weeks was to stay alive for one last Christmas at home. His children are not even into their teenage years.

I'm angry at the disease itself but I find myself more angry at the doctors who treated his original skin cancer. They made no efforts to check his body for any sign that the cancer had snuck away to brood and breed in his innards. For all I know the doctors may have been following standard practice. But in his individual case, they let him down. And that makes me want to spit and shout.

It also makes me want to ensure I am doing everything I can to make sure I'm not imagining my new found health. My cancer was stage 1, which means they think it has remained in the breast. But how accurate is the staging? And what if I'm in some tiny percentile of cancers that, say, leave the breast but don't leave any evidence behind on the lymph nodes to show their passage?

During my treatment, I've been in countless meeting rooms with specialists who could tell me these things. But you're so often overwhelmed emotionally, like I was just after diagnosis, or you're overwhelmed physically, like I was during chemotherapy. So for the first time, now treatment has ended and I have the courage an all clear gives you to deal with the answers, I have an appointment with the Professor where I can ask him all the questions. I feel bad, because it's ostensibly scheduled so he can check my portocath wound and remove the stitches, yet I will be ambushing him.

This is a man to whom I have become outrageously indebted. He has saved my life, no doubt about it. But I will ask him some uncomfortable questions. Uncomfortable for both of us.

What happens to my chances after ten years? Could the cancer have spread despite my lymph nodes being clear? Can I have any other scans to check the rest of my body? Have we done absolutely everything we can do? Are there any remaining options left?

I may be picking a scab that's best left to heal all by itself.

But I just want to make sure I know everything I can about the future, and that I will have done everything I can to ensure I have a future.

Be at peace, Andy.

Wednesday, December 05, 2007

Hair Story


In looking around the net at hair regrowth stories I stumbled across this wonderful image - a collage of hair regrowth after chemo. Taken every week after her treatment for cancer ended, it was created by a photojournalist called Karin Stack.

It shows just how much 'sticky-uppiness' I have to contend with before my hair will eventually be long enough to just lie down and get back to normal.

According to the sequential ordering, and the timing since my hair started growing, I should be looking like the shot five rows down and one in. About 16-17 weeks then.

So do I? Yes, by comparison I'm doing alright. I look like this today...


It's a rubbish photo, taken moments ago under nasty office lights, but it gives you an idea of progress.

And the funny thing is I get compliments all the time. Not simply 'You're looking better' (which I am, though a holiday glow helps somewhat), but also genuine conviction that I should keep my hair this short as it really suits me.

Now, I'm enjoying having hair that finally looks like an intentional haircut, rather than a medical disability, even if it is greyer and mousier than it ever was before. And I love a bit of flattery. Who doesn't? But I can only ever think if of this style as transient. It makes me feel normal again, but it doesn't make me feel like me yet.

Plus, whenever anyone suggests it looks much better this short when R is around, I feel him tensing up beside me. He's probably terrified I'll be swung by all this flattery and stay boyishly cropped forever.

He needn't fear. It may take a while but I want my mane back just as much as he does.

The Ongoing Follicular Indignities of Cancer

I mentioned a while ago that one of the effects of the chemo leaving my system was hair regrowth all over.

This included a scary surge in the white-blonde soft downy hair on my jaw line and cheeks. My post on this was, appropriately titled, Bearded Lady.

Well, it hasn't gone away yet. In certain lights I catch myself looking very fluffy round the edges.

Some people have advised me that they suffered the same side-effect during recovery from chemo and that it simply went away. Most can't even remember when their cheeks and jaws returned to normal, they just know they did.

A little tactical googling has revealed, slightly disturbingly, that some post-chemo patients have taken to shaving it off. Some report that all it needs it one shave or wax and the hair doesn't come back.

But everyone who's ever been a woman knows the golden rule when it comes to body hair, from years experience painfully clocked up through the teenage years and beyond.

Shaving body hair will only result in regrowth that certainly appears to be even fiercer and thicker than before.

I wasn't about to shave my face, for goodness sake!

But I was interested in whether or not this was a recognised medical side-effect, or if it's some sort of collective hysterical reaction to otherwise normal hair regrowth that all of us post-chemo patients are experiencing. And I found more information on a breast cancer discussion forum.

The medical term for the type of hair is lanugo, and it is more commonly seen as the hair that often covers the head, neck and shoulders of a new born baby. It is the first hair to be produced by the fetal hair follicles and is fine, soft, and usually without pigment. Thank God. It normally appears first when in the womb. It is usually shed before birth but some babies are born with it and do not lose it for as long as a few months.

It's also seen on anorexics, as a compensation for body fat.

And, it seems, it is also prevalent on post-chemo patients as the follicular response to regrowth after the battering their hair follicles have recently taken.

So, just call me Baby-Face Weeden from now on...

Monday, December 03, 2007

Yawn


yawn, originally uploaded by Catalina Pimentel.

Last night I went to the bed at the normal time, around eleven. I was wiped from the operation, but I didn't expect to sleep as long as I did.

I woke at 2pm today.

That's fourteen hours straight. I clearly needed it.

Saturday, December 01, 2007

The Kerala Tales, Part Five

Or, A Wet Weekend in Pondicherry

R has a friend who moved out to India a few days after my lumpectomy back in April. She is French and had found a job managing a hotel in Pondicherry, a small city on the East Coast of Tamil Nadu. It used to be a French colonial outpost.



The street names all sound French and they drink more red wine than you'd expect of a predominantly Hindu area. The policemen even wear Kepis, and their bins are peculiarly sinister looking rabbits (though I don't think the rabbit thing is a French thing).





Pascale was taking her six year old daughter, Victoire, with her. Victoire was going to be enrolled at a local school, where they would study classes in Tamil and English.

I remember we went to visit them both for a cup of tea to wish her well a few days before they left. I was still recovering from my operation physically, and shell-shocked from my diagnosis emotionally.

Pascale was packing up the final items in her house and gave me a little Ganesh. A tiny bronze elephant she'd bought on her trips to India. She passed it on with the advice to put the tiny pachyderm somewhere where he could survey all who entered my flat. That way, she said, he would stop any bad spirits from entering.

And he has sat, patiently guarding me from bad spirits, on the windowsill next to my door ever since. I give him a little stroke every now and again, for luck, and to keep his back nice and shiny.

Now, eight months later and during our holiday in India, we thought it the perfect opportunity to try and pay Pascale and Victoire a visit. We may have been staying 500 miles away from where they lived, but budget airlines have come to India, so we found ourselves booking two seats on an Air Deccan flights from Trivandurum to Chennai for 4,000 rupees. Or around £50 for us both. Throw in another 2,000 rupees for an almost fatal taxi ride three hours south to Pondi, and we were there in time for tea.



We stayed at Pascale's apartment and hung out with her and her daughter, and Mugoo and Valee, her babysitter and cook respectively. It felt weird having 'staff' around. Valee would just about cope if I tried to make a cup of tea in the kitchen, but if R tried to lift a finger he was severely scolded and sent back to sit down. But Pascale works every day except Sundays, from 9 til 3pm and then again from 6.30pm til midnight or later. With those hours, anybody would need help, and Victoire seems to love Valee and Mugoo. It quickly became apparent that this might have something to do with how readily they indulged her whims - more so than a mother would at any rate.


Pascale and Valee

On Saturday, Valee could a massive pot of Chicken Biryani. Pascale had warned me that she may need some help with any electric gadgetry required, and I wanted the opportunity to see how she cooked, so I set to with her. With some great effort in sign language she indicated she wanted me to chop the three heads of garlic and a massive fist of fresh ginger. I peeled and cleaned the raw ingredients and gave them a whizz in Pascale's small blender. I showed Valee the results.

More, more she motioned. Clearly she wanted it chopped really finely.

I whizzed some more. And some more. Still not happy, she shook her head and motioned again. She took the margarine out of the fridge and gestured that she wanted the mixture to resemble this in texture.

So I added a drizzle of olive oil and whizzed the stuff until I feared I'd fry the machine. The pieces of ginger and garlic were tiny now, but were not getting any smaller. Valee took the bowl back off me and marched next door. She returned ten minutes later with a satisfied smile on her face. I peered into the bowl. What had been finely chopped garlic and ginger earlier had been transformed into a creamy sauce.

God knows how she had done it. No blender in the West would have had that effect. I suspect it was some artful pestle and mortaring in the neighbour's kitchen.

Chastened, I left Valee to finish the cooking and just watched. I was obviously not worthy. The Biryani was delicious.





The following day we went market shopping with Pascale, who drives a hard bargain. I bought another Ganesh for a friend. This one flashes with multi-coloured lights and is the height of Hindu Camp. It's great and shall be my house-warming come birthday present for her.



The market was full of other bargains. We didn't buy any vests or pants, even though there was a stall specialising in them. But we did buy an awful lot of other shit. And we bumped into Valee and her daughter, shopping for saris.



Later we visited a Hindu temple, dedicated to Ganesh in fact, with the most amazing carvings inside. Hindu temples welcome all and sundry apparently, unless you are a menstruating woman.

How can they tell I wondered?



The temple also had its very own temple elephant, trained to take coins from visitors and bless them by touching their heads with its trunk. The elephant had pink eyes which made it look a little tired, but it was sporting rather sweet elephant-sized anklets.



Do anklet shops have to arrange the little silver chains by size? I imagined rows arranged in order - infant, girl, lady, and elephant.

It rained every day, each day harder than the last. What we'd failed to realise until we got to Pondi was that Tamil Nadu tends to miss out on the main Indian monsoon from June-October and instead gets most of its rain between October and January. I felt damp for the duration of our whole visit.



Eventually we gave in and headed back to Kovalam, land of palms and sunshine, relieved to be resuming our holiday.

Port out, Starboard home



Today, exactly eight months to the day since my lumpectomy, I went under the knife again, with the same surgeon, to have my portocath removed.

And I got to keep it.

The titanium encased valve that's been sitting under my skin since the first of May is finally out. The white tube you can see above wound around and into my jugular vein. Getting the drugs right to where it matters.

Once this scar heals I'll be able to sleep on my front again, should the mood ever take me.

I could have left it in apparently. You can leave these things in for several years if you want to. Made me consider taking up smack, for a moment, just to take advantage of the technology inside my body. Then when I realised I probably wasn't cut out for a heroin habit, either financially or psychologically, and decided to have it out.

Its removal feels like yet another bookend to this whole sorry saga. Another line drawn underneath the whole thing.

I may turn it into a bizarrely macabre yet triumphant piece of jewellery.

Get thee behind me cancer.

The Kerala Tales, Part Four

Birds of a feather, they flock in India.

Towards the end of our trip we took a rickshaw to the river about 20 km away and paid a lovely man about a fiver to punt us around the backwaters there. We felt stupidly touristy sitting on our plastic garden chairs like they were some sort of thrones, but our punting guide spoke brilliant English and talked us through every bird in every tree.

And there were a lot of trees...

This is a brown tern by the river bank.



And here's the ubiquitous Indian kingfisher - everywhere we went we saw flashes of blue as these small birds flashed through the palms.



Terns come in many shapes and sizes, apparently. This one is unusual though - a giant tern.


A cormorant drying its wings:


Another tern - this one's white flavoured...


And here's a sea eagle, a magnificent bird. At rest in a palm...


And in flight...


But the best wildlife spotting we did all holiday was one lazy afternoon by the hotel pool. The sky had become slightly overcast and it was getting late. R was in the pool talking to me, when suddenly his jaw dropped as he caught sight of something behind me.

What is that? It looks like some sort of teradactyl!

I turned and saw the back of large black and brown creature disappear into a papaya tree. At full extent, its wingspan stretched about four feet. It was a large fruit bat.

As it settled itself upside down among the unripe fruit, I pulled out my camera and tried to get a shot. The light was really tricky in the shadow of the tree, so I was on manual focus and exposure, fiddling with the settings, when the damn thing decided it was time to take to the skies once again.

I panned round and fired the shutter a few times, cursing the fact I was on manual focus, my fingers playing with the focus ring but knowing there was little chance of getting it right under these conditions.

But later, checking the display, I realised one shot was pretty near perfect. How's this for jammy?

The Kerala Tales, Part Three

There was a bit of a running theme of dubiously named products when in India.

First, we discovered one of the main brands of water available in Kovalam was called 'Golden Stream'.

This made me snigger, but then I do have a filthy mind...



We thought that was bad enough. But then, when we went over to the other side of the country for a few days we turned down a street and saw this sign for a local hostel. This took 'Golden Stream' to it's logical smutty conclusion.

Hurrah for the joys of english in the hands of strangers, that's what I say...

Tuesday, November 27, 2007

Sing it loud and proud

I'm brimming over with a half contained excitement.

I had my follow up scans today (ultrasound) and a consultation with the breast surgeon. I'd pretty much parked it in my mind (the state of denial is a far happier one) apart from one day on holiday when it dragged me down, but I am glad to report those two little words we all long to hear...

All clear.

All is as it should be. The last nine months of highs and lows have not been in vain.

And thank **** for that. God knows what I would have done had the news been any different. There were moments where my mouth was dry and my heart beat very fast. During the ultrasound when the memories of diagnosis came flooding back, the experience of realising that something was not quite right as the radiologist I had back in March hovered over the tumour and a shadow fell across his face. Today's radiologist reassured me at every turn but I was still jumpy as a rabbit.

So off I skip to dinner at a friend's. I'm going to bring a bottle of champagne rather than wine I think. An all clear treat for tonight.

Sweet news indeed.

Sunday, November 25, 2007

The Kerala Tales, Part Two



One morning early in our holiday I woke at six, unable to get used to the new timezone. I wandered down to the beach and watched the fishermen cast their nets into the bay and then spend the next two hours hauling them in. Their patience and skill was captivating. Their weather-beaten faces showed that they had been doing this all their lives and several were even missing hands (lost to fishing lines over the years, maybe?). As many as about 50 men worked together for a catch which one local told me would only fetch around 500 rupees at the market (about six pounds sterling). It's no wonder most of the town are turning to tourism to make their money. This is the way traditional trades and crafts are lost, all over the world.












The early bird catches the fish.


I spotted this guy at one point. Clearly white (with a painfully pale complexion and the sun damage to show for it) I wondered what his story was. What was he doing working side by side with all these local Muslim fishermen? Maybe I have inadvertently stumbled upon Lord Lucan, who knows...