Monday, December 31, 2012

Wishing you all a Blazingly Good New Year…

Day 22
 
General status update
Hair: Panic-stricken about FEC 2 and trying to retract itself into its follicles, but I think that only works with testicles
Nausea demon: Seems to be arranging some kind of New Year’s Eve party with the
Chemo Muse, who is busy trying on, and then discarding on the floor, numerous party outfits. If she doesn’t put them all back on the hangers, then there is going to be trouble.
Sleep, lack of: Currently acute - I went to bed at 3.50 am this morning, and was up at 8.
Anxiety level (1-10): Rocketing, but I’ll tell you why tomorrow.
State of mind: See Anxiety, above.
 
 
 

 
New Year’s Eve at the oncology clinic turns out to be much like any other day: although there is still some festive tinsel around, the holiday lull seems to be over and the room is, as usual, full of bald men, and women wearing headscarves, or knitted woolly hats – no wigs in evidence.

When I am called in to see Stan, he greets me cordially, comments on how well I am looking, and asks how things have been since he came to my rescue during the Great Nausea Meds Crisis on day 7 of my first chemo cycle, 2 weeks ago.

PerfectlyfineMyonlymajorsideeffectssofararethenauseaandsleeplessnessandthewhole
hyperactivitythingdoyourememberyoutoldmeI’dbesurprisedbyjusthowmuchIcoulddo
whileIwashavingchemo,well,youwereabsolutelyrightandI’vebeenworkingamazinglyhard
onawritingprojectI’vewrittenmorethan20thousandwordsnowandI’vealsoraisedabout450
quidforTheHavensofarbygettingpeopletosponsormychemoandIhopetoraisealotmorebytheend..’

I am forced to pause for breath, but before I can continue gabbling Stan lifts his hand and says ‘Hang on a minute. Did you just say you were getting people to sponsor your chemo?’

‘Yes!’ I beam at him, ‘I think it may quite possibly be the world’s first ever sponsored course of chemo.’

‘I think you are very probably right there’ says Stan, slowly.

Then he smiles at me ‘Caroline, I’m proud of you for making something positive out of this – I know how terrified you were of having chemo’.

I manage not to burst into tears, but it’s a close-run thing.

Stan, of course, has absolutely no idea that he has been co-starring in this blog for the last 3 weeks (along with Hank the Hungarian Visla – it’s a close call as to which of them has the most fans), nor that several women have already indicated to me that when they get cancer, they definitely want Stan to be their oncologist. I decided not to mention any of that – we wouldn’t want him getting big-headed, or anything.

Today’s YouTube clip is a special New Year’s Song by the wonderful Northumbrian folk singers the Unthanks; it accompanies pictures of a traditional north of England New Year’s Eve ceremony, the Allendale Tar Barrel Procession, another fiery event of (possibly spurious) Viking origin.

 This song is dedicated to @fionalaird by way of apology for her Hamster Viking Funeral-related distress. Look, Fiona - lots of flames, and NO dead hamsters!




 
 
Happy New Year!

Sunday, December 30, 2012

There's a (happy) place in the sun....

Day 21 

General status update
Hair: The suspense is killing both me and Hair. Am tempted just to shave it all off, so I can stop waiting for it to start falling like autumn leaves. Hair, unsurprisingly, not overly impressed by this idea and determined to fend off the ravages of FEC 2 in the spirit of the Siege of Leningrad. Have nasty feeling that particular event ended up with everyone eating rats. And worse. Still, I could get Big Sis Fo to send some down from north Yorkshire, where there are plenty going spare.
Nausea demon: Pumped. There’s no other word for it. B*ST*RD.
Chemo Muse: Off out having her hair highlighted so she can look her best for Chemo Cycle 2. Of course her hair isn’t going to be falling out, is it? B*TCH.
Sleep, lack of: Pill last night, so no pill tonight. Oh Morpheus, gentle deity, please take me in your arms  tonight - PLEASE.
Anxiety level (1-10): The rapid, high-pitched whine of anxiety in my head has broken through the sound barrier, exited the Earth’s atmosphere, and is now heading towards Mars.
State of mind: No longer incubating escape plans, as I still was 3 weeks ago before FEC 1. Now resigned to being totally FECKED, in 6 instalments.
News from North Yorkshire: Hank keeps backing up into corners whenever the MC approaches. That is now one very nervous dog.
 

The second cycle of chemo - when the next dose of powerful toxins will be pumped into my bloodstream and, perhaps, bring about the rapid loss of my hair - will begin on Wednesday, and I seem to be becoming more than a little tense. Tomorrow morning I will be off to the hospital to see my oncologist again, to discuss how the first cycle went, decide whether the various meds to deal with the side effects need to be adjusted and, most importantly, go through the pre-chemo blood test, carried out to check that your now-compromised immune system has recovered sufficiently after the last dose of chemo for you to survive the next one.  

If the platelet count in your blood is too low, then they won’t let you have any more chemo until it has recovered sufficiently – otherwise the next dose might result in you becoming very seriously ill, or even dying. In order for the chemo drugs to be strong enough to kill off the reproducing cancer cells (chemo kills cells which are reproducing, mostly), they also have to be strong enough to kill the healthily reproducing blood cells which keep the immune system working. If too many are killed, the patient is at very high risk from any infection, however small, especially during days 7-10 of each chemo cycle, when the chemo has had time to do its work, and your immune system is at weakest, and has yet to start fighting back.  

A couple of my on-line friends have been re-hospitalised with infections already, and so I am being insanely vigilant about staying away from crowded places and public transport, washing my hands constantly, and insisting that anyone who enters the flat washes theirs before doing anything else - which can come across as quite rude, unfortunately. It’s hard to get across politely to a dear friend that you don’t want to hug them until they’ve washed their hands, but we live on the fourth floor, and visitors must touch the brass door handles to open and close the (old-fashioned, manual) lift doors, handles that are touched by hundreds of people each day; at the moment some of those hands may well be infected with the highly contagious Norovirus, currently laying waste to the London population, which can live for six months on hard surfaces… and the Norovirus would, at best , put me in an isolation ward for a couple of weeks. At best.  

I seem to have got through the first cycle of FEC relatively unscathed, apart from the constant nausea, sleeplessness and hyperactivity, the dry and sore skin and greatly magnified sense of smell; unlike some of my virtual chemo buddies, I have not yet  experienced any hair loss, mouth ulcers, thrush, cystitis, constipation, diarrhoea, indigestion, sore eyes, black nails, major fatigue or life-threatening infections.

It’s early days yet, of course, and not every patient gets ALL of these side effects. I know it will get worse, but it’s not clear yet if the side effects I already have will get worse, or if additional ones will start appearing – maybe it could be both. I’m most anxious about my hair – it’s been so good this cycle, after having the cold cap, just sitting there quietly on my head, and not falling out. Over the next few weeks, however, after FEC 2, it will almost certainly begin to fall out – if I’m lucky, and the cold cap continues to work, it will just start gradually becoming thinner; if I’m unlucky, the whole lot will go, quite fast.

Fingers crossed eh?

In the mean-time, am working on reducing the anxiety in 2 ways: first, obvs, through the use of weapons-grade pharmaceuticals and second, by doing a runner to my Happy Place in my head, even if I can’t do it in reality. I don’t know why I kept threatening to run away to Goa, in the early stages of denial, anger and rebellion after my diagnosis, because the Camel Barn and its environs, not Goa, is my Happy Place, and evoking and concentrating on images of Ayvalik can always calm me down and make me forget, at least for a little while, the many unpleasant things that are happening to me.

A couple of years ago I kept an on-line photographic diary for a while, on which I put  photos from my long walks in the hills around Ayvalik. I'm not much of a photographer, as will be evident, but I spent nearly 4 years pointing and clicking with my mobile phone at every beautiful view, and it is a place that abounds in beautiful views, both natural and architectural.
 
Below are three entries from that diary, about Ayvalik sunsets; the accompanying images are some of those I use to absent myself, temporarily, to my Happy Place in the sun when the unrelenting barrage of nastiness from this cancer and chemo business is just All Too F***ing Much…

 
  

Friday 23 April 2010: Another Ayvalik sunset...
 
 

'Coming back home again after 3 weeks travelling in south-eastern Turkey has made me look at both Ayvalik, and my house, with renewed appreciation. 

I took my dog up the hill early yesterday evening for his walk in the pine woods, and was welcomed back by a truly spectacular sunset over the Aegean. It reminded me how very lucky I am to have such extraordinary natural beauty there to enjoy freely every day, only a few minutes’ walk up the hill from my house in the town.'

 

Friday 30 April 2010: Why I can't leave Ayvalik...
 


The view, the light, the sense of calm that fills me every day when I walk up into the pine woods and look out over the Aegean. Even though I've photographed it a hundred times before, and posted it on here several times already, I can never get enough of this view.



 Wednesday 26 May 2010: Reaching new heights

 

Over the last few weeks I have been going on longer and longer walks every evening with my dog Freddie, gradually exploring and mentally mapping all the different tracks (they're fire roads, I think) that run through the pine woods on the hills behind & beyond Ayvalik. This is a labour of love: these woods, and these walks, are quite beautiful and I want to get to know them thoroughly both for my own benefit, & so I can show them to visitors. Very few people, other than beekeepers, ever go there - as a nation, Turks are not keen on recreational walking - so usually Freddie & I have miles of woods entirely to ourselves. 

Today was the longest and most beautiful walk yet. We were out for nearly 4 hours, and climbed to the highest point in the hills, from where there is a quite breath-taking view over the Ayvalik archipelago & across the Aegean to Lesbos. Freddie & I were very tired when we got to the top of the hill, so we sat in the grass to rest, & breathed in the scent of the pines & wild lavender as we watched the sun start to set over the Aegean..
 

When times are bad, and I’m feeling sad, Ayvalik is my (happy) place in the sun.

Take it away, Stevie!


 


Saturday, December 29, 2012

Do NOT try this at home – ever

Day 20: Intermezzo - a canine interlude

General status update
Hair: Frozen in terror in anticipation of Wednesday
Nausea demon: Doing one-armed press-ups to get himself in peak condition for the renewed nausea offensive after FEC 2. There’s a trick to it, apparently: he learned it from an old con he was tormenting in Wormwood Scrubs a few years back.
Chemo Muse: Getting very excited, and hoping to be able to dictate at least 10,000 words to me while I’m hopped up on steroids from Wednesday – Saturday. My main worry here is getting repetitive strain injury from all the typing.
Sleep, lack of: I don’t give a monkey’s if Lorazepam is addictive, I’m taking one tonight – don’t forget they are for anxiety as well as sleeplessness. Double whammy.
Anxiety level (1-10): 3 days until the next dose of poison – what do you think?
State of mind: better than Hank’s, for sure (see below). 

News from North Yorkshire: read on 

No animals were harmed in the writing of this blog – not by me, anyway. The following account is a reconstruction of the events in question put together from conversations with some of the less-traumatised participants and witnesses.

 


Boxing Day chez Big Sis Fo and the MC in rural north Yorkshire is always a very quiet day: after the enormous effort that goes into producing the Christmas Feast, and enjoying to the full the extraordinary array of wines that accompany it, the MC and Big Sis Fo (who functions as his sous-chef ) retire early, and sleep long; it is a House Rule for those guests who have stayed overnight that they should not expect their hosts to surface much before mid-day on Boxing Day, and should make their own breakfast.

Thus, earlier this week on Boxing Day morning, Big Sis Fo stumbled downstairs in her dressing gown at about 11 a.m., and headed towards the kitchen in search of some strong coffee. 

As she walked into the kitchen, yawning, she saw something which made her blink, for a moment quite unable to comprehend what she was seeing. She stood stock-still on the threshold trying to make sense of the tableau before her: the room had three occupants, namely Hank, the huge and demented Hungarian Visla, the MC, and Nick, another Fo brother-in-law who, as regular readers may recall, has bravely offered to assist in the implementation of my Viking funeral (now scheduled to be held on the River Derwent, which flows past the end of his back garden and thence into the North Sea, via the River Ouse), in defiance of any adverse legal consequences that may follow.

On Hank’s large, daft face there was an expression of extreme anguish, and he rolled his eyes at Big Sis Fo in mute, desperate appeal, as well he might, because Nick was holding Hank’s head, with the jaw firmly clamped shut, while at the other end the MC, clad in a cowboy-patterned Cath Kidston oil-cloth apron accessorised with a pair of bright yellow rubber Marigolds, had his fore-finger inserted into Hank’s rectum and was wiggling it about inside, as if trying to find something. Beside him, on the kitchen table, stood a large tub of Vaseline.

Big Sis Fo, not one to mince her words, especially when she comes across her partner in life apparently sodomising the dog, with company, barked: ‘What in HOLY HELL is going on here?’

Nick looked up, panic-stricken ‘It's not what it looks like...'

The MC, unperturbed, and without ceasing his digital exploration of Hank’s inner recesses, said: ‘Darling, you know Hank has to have his anal glands stimulated from time to time to get all the fluid out.'

 ‘I know perfectly well  it needs to be done’ said my sister, through gritted teeth. ‘But it needs to done by the vet. In his surgery. Properly. Wearing surgical gloves. Not IN MY KITCHEN by an enthusiastic amateur wearing bloody MARIGOLDS.’ 

‘But it’s Boxing Day’ said the MC. ‘Last time we had to take Hank to the vet on a Bank Holiday it cost nearly a hundred quid.’ 

‘That’ said my sister, somewhat tersely ‘is BESIDE THE F***ING POINT’ (she says this a lot, as you may have noticed). 

‘But his tail was down, and he was looking really uncomfortable. His bum is so sore he can hardly sit down.’ 

My sister lost her patience: ‘If I were a dog, I would infinitely prefer to endure a little discomfort, rather than have you f***ing around in my arse. LEAVE HANK ALONE. And throw those Marigolds away, please. NOW.’  

A few minutes later Big Sis Fo, now armed with strong coffee and beginning to revive, looked into the Boot Room, where the traumatised Hank was lying on his dog-bed, being consoled by Nick, while the MC was off phoning the vet. 
 
 

Nick was talking softly to Hank, unaware that he was being overheard.

‘It’s been a funny kind of start to Boxing Day for you, Hankie Boy, hasn’t it - buggered by the MC already, and it’s not even 12 o’clock yet?’
 
 


 

Friday, December 28, 2012

An act of senseless violence against an entirely defenceless domestic appliance

Day 19

General status update
Hair: Very worried indeed, inasmuch as hair can be worried – the 2nd chemo cycle starts on Wednesday. This could mean a rapid exit for the hair.
Nausea demon: Cheering up enormously as FEC 2 approaches; he is looking forward to being properly unleashed again.
Chemo Muse: Also very excited about the approach of the new chemo cycle, when her already awesome powers will be augmented by several whacking great doses of steroids, first intravenously, then by mouth – she JUST CAN’T WAIT.
Sleep, lack of: I took one of Satan’s Little Helper’s last night, so I’m not allowed to tonight, what with them being highly addictive, and everything. BUGGER.
Skin: I’d like a new one, please. And if you could make it one that tans easily and instantly at the first hint of sun, like my best friend Clare’s, that would be absolutely terrific. Then I can stop hating her - 30 years is a long time. Thanks so much.
Anxiety level (1-10): Ratcheting upupupupupupUP as FEC 2 looms.
State of mind: I cried over Linda Snell’s end of Xmas concert speech in the Archers tonight, which says it all, really, doesn’t it?
News from North Yorkshire: coming soon.

 

Not the actual fridge, which no longer exists, but a near-enough simalcrum..This pciture was stolen from the interweb. I am a Bad Person, as well as having a Bad Attitude, it seems.
 

I’ve always hated small fridges, but on a completely justified basis, so the level of psychological distress they have brought me over the years needs to be taken into account when considering this particular incident.

Further, it was a hot summer’s day, and given the short period of time which I had available to complete the defrosting of the teensy-tiny, completely frozen-up freezer compartment inside the doll’s size fridge, before its recently-evacuated contents defrosted, I would argue that it was entirely reasonable to attack it with a hammer. It was the ice I was attacking, not the fridge, and the extent of the collateral damage took even me by surprise, but I was under a great deal of stress at the time.

And it all ended well. Kind of.

One day in late August this year R, on a train back from Gatwick where he had been seeing someone off at the airport, was both alarmed and perplexed to receive a text from me which read ‘You must do as you see fit, but I am never going to have anything to do with that fridge again. NEVER.

There was no line of xxxs appended to the text which, quite apart from the words, he recognised as a sign of clear and imminent danger of complete emotional meltdown on my part; he says it’s like when the birds all stop singing before a volcanic eruption or a tsunami.

R called me at once. Apparently (my recollection of this is not entirely clear, to be honest, but he says the words remain engraved on his brain) I informed him that I had broken off all relations with the fridge, which was just INTOLERABLE, and maybe now a little bit broken, also, and that in future, given that we could not afford a new fridge, I would just eat and drink things which did not need to be kept cold. He could do as he wished, but the fridge and I were OVER.

R said ‘But I thought you said it didn’t matter about the fridge, and that you could put up with it’.

‘I thought I could, but I can’t. I’m sorry, it’s just too much.’ I then burst into tears, and put the phone down.

R took a long time to get home, having nobly returned via John Lewis in Oxford St, where he ordered a new fridge. I think he may have also have spent some time wandering the streets trying to work out how to deal with the madwoman in his flat, laying waste to the white goods.

When he got finally got back to Gurkha Towers I was sitting bolt upright on the sofa, red-eyed, and still muttering furiously to myself about the fridge.

I had a wonderful fridge of my own, the Fridge of Fridges, my dream fridge, the tall  spacious self-defrosting fridge-freezer I HAD ALWAYS WANTED, back home in the Camel Barn; what was I doing living in a place with a dwarf-sized 15 year old fridge that was falling apart even before I started attacking its miniscule frozen-up ice compartment with a hammer?

How had my life COME TO THIS?

R sat down, gave me a hug and said, equably, We could have just discussed this, you know. I agree, the fridge did need replacing, but you said you were fine with it for now, given that we’re a bit hard up for the foreseeable future.’

The financial cost of leaving our previous existences to make a life together has been very high for both of us; R and I are living in what they used to call (and maybe still do) ‘reduced circumstances’.

‘I was OK with it, I was,’ I replied, miserably ‘ But just now, when I was trying to clean it and it was all frozen up again, something snapped, and then - I just WASN’T.’

‘That would be when you started attacking it with the hammer, I expect’ said R, looking into the kitchen at the pools of melting ice and the shards of broken plastic that had once been the vegetable crisper.

He paused, and looked into my eyes: ‘Caroline, is there anything you’re not telling me, here? Is there anything else that’s bothering you, apart from the fridge.’

‘No, of course not.’ 
 
R waited, in silence. He’s very good at that ‘tripping up your interlocutor into revealing secrets simply by remaining silent for an extended period of time’ thing.

‘Well, it’s probably NOTHING AT ALL to worry about, but…’
I stopped. I couldn’t bring myself to say it.

‘What? Tell me, Caroline, what is it.’

I took a deep breath.

‘I’ve got a lump. I’ve got a lump IN MY BREAST.’

R put his arms around me again, and I buried my face in his chest and wept.

I think I knew, even then, denial or no denial, that this was not going to end well. On some level, I just KNEW.

R stroked my hair, and whispered to me: ‘I’m here, don’t worry, I’m here. And I will stay here. As you say, it’s probably nothing – but if there is something bad, I will be here. Whatever happens, I will be here, and I will look after you. I love you - even if you have just murdered my fridge’.

And then I laughed, and cried some more.

(I’ve just realised that my posts on this blog have related events very slightly out of chronological order – because it was, in fact, R who then insisted that I make an appointment to see the doctor, at the first available time) 

Thursday, December 27, 2012

My (entirely hypothetical, obvs) funeral arrangements

Day 18 
General status update 

Hair: Somewhat dishevelled due to Fear Of Brushing, but very, very shiny Maybe it’s the after-effect of all those radioactive dyes they injected me with; must check to see if it also glows in the dark.  
Nausea demon: Has finally sat down and discussed his issues, which are essentially that it is completely unfair of me to keep slagging him off in public when he is only DOING HIS JOB. If he does his job effectively, and I feel utterly vile, then it shows that the chemo is working, so why am I shooting the messenger?  
Chemo Muse: She agrees with the Nausea Demon, and points out that like him, she is ONLY HERE TO HELP, so could I possibly stop knocking her out with Lorazepam, and preventing her from doing her job effectively? Pfft – once again, I am accused of having a Bad Attitude. I am failing Cancer 101. Even the Chemo Demons hate me.
Sleep, lack of: I’m writing this at 1.22 am, and desperately trying to resist the temptation of taking another one of Satan’s Little Helpers so that I can go to sleep (n.b. this refers to the first draft of this blog post, which was started last night). 
Skin: It hurts. In some very odd places. Don’t like this AT ALL. 
Other physical side effects too gross to mention: One, so far.
Anxiety level (1-10): how many worries can one person have? Shouldn’t there be some kind of a limit? 
State of mind: Dark and snarly – you really wouldn’t want to go inside there. 
News from North Yorkshire: there is some, but it’s so Very Special, it deserves a blog post all of its own. Watch this space.
 
 I went back to the hospital this afternoon, to have my PICC line flushed; this must be done every week to ensure that it stays clear for taking blood, and pumping in the remaining five doses of chemo. I sat down in the waiting room of Clinic 8, along with just a scattering of other chemo patients (the hospital is much quieter over the holiday period), and started reading my book, but it became difficult to concentrate a few minutes later when warfare broke out inside the cheerily-named ‘Blood Room’; we all sat transfixed as what sounded like at least 3 unseen nurses began a prolonged ding-dong battle at high volume. Annoyingly, the voices being so high-pitched and the fast and furious torrent of words so difficult to follow, the only thing I could make out clearly was the sentence ‘You are A PROFESSIONAL!’ repeated several times. This went on for so long that eventually I tuned it out and started thinking about other things, primarily my funeral arrangements.
 
I went to school with a girl who had her entire wedding planned out, from the bridesmaids’ dresses, to the colour of the flowers, to the menu for the nuptial feast, by the age of 14. We lost touch after leaving school, so I never got to know whether she achieved the wedding of her dreams, or ended up having to make alternative arrangements – I like to think it was the former. 

I, on the other hand, as a life-long lover of ancient, mossy graveyards, (particularly those with extravagant funerary monuments incorporating weeping angels),
 

 and as one who did a special paper at university on the Latin inscriptions on Roman tombstones (no, really I did – it was such an obscure subject that the only relevant text-book, which I still have somewhere, was in French), have always been more partial to planning my funeral, and suitably over the top grave décor: I’ve been fantasising about having a really outrageous tomb since I was a teenager. 
 
Some of life’s rites of passage can take place more than once, but funerals are unique events: you can only have one of them, unlike weddings, of which you can have as many as you like, given easy access to divorce, money enough and time. Not to mention energy. But your funeral will only happen the once, and you are unlikely to have the opportunity to redecorate your final resting-place, once installed; it is therefore incumbent upon the person who desires a good send-off, in the style which they would prefer, to plan ahead accordingly. 
 
I am not a big fan of the actor Nicholas Cage, but was most impressed recently to hear that he has had the good sense to purchase for himself, decades ahead of the probable time of his demise, this tomb, in one of the many strange and wonderful graveyards of New Orleans:
 
 
My own ideal tomb, like that of Tiberius Julius Celsus Polemaeanus, Roman senator and governor of Asia (105-107 AD), would be a sarcophagus incorporated within a fine, stone-built memorial library; in his case, the library was at Ephesus, and has weathered well over the years -
 
 
although if we are going to be realistic, the Fo Library-Mausoleum is unlikely to be built unless I win the Euro millions lottery on a maximum rollover day. But, hey, a girl can still dream…
My preferred choice of funeral may also be a bit tricky to accomplish. R and I both come from Viking stock (or so we like to think), our respective families having originated in the north-east of England (which was pretty much over-run by Vikings back in the Dark Ages), and in each case having many family members with red-gold hair. It is hardly surprising, then, that I have always been drawn to the notion of the Viking funeral, going out, quite literally, in a blaze of glory:
 
 
I’ve always thought the Lady of Shalott’s final journey down the river would have been enlivened considerably, had Sir Lancelot only had the gumption to set her boat on fire.  
Unfortunately, current health and safety regulations mean that this particular method of corpse disposal is likely to result in unfortunate legal consequences for those left behind, although one of the many delightful Fo brothers-in-law, Nick, has bravely offered to give me a hand with such plans if funeral arrangements should become necessary. He emailed me as follows: 
Hello Caroline,  
Very sorry to hear of your cancer, but glad to see you are positive and taking it on! With reference to your idea of a Viking funeral, I wonder if we could make use of the mighty river Derwent, which flows at the bottom of our garden. I have a Pedalo type boat, and although I know having a picture of a squirrel on the bow doesn’t compare to the fierce dragon of a Viking ship, I'm sure we could get your Uncle Brian [an artist] to scary it up a bit! 
 
The Derwent flows into the river Ouse and then out to the North Sea which the Vikings did use to invade these parts. Plus, if you became a Hindu you would be covered either way. Of course we would have to be careful of the wind as we wouldn't want to set fire to anyone's garden shed as you sailed past!
 
Love, Nick
 
That is the kind of family support one really needs at a time like this; this post is dedicated to you, Nick! 
 
But do not be frightened, gentle readers, and do not be dismayed, by all this talk of funeral arrangements – I do not expect to have to put any of these plans into action in the very near future. If the cancer does come back and kill me, it is unlikely to be for some time: my oncologist assures me that with the barrage of treatments he is inflicting on me, post-surgery – 18 weeks of  chemotherapy, then 3 weeks of  radiotherapy, then 5 years of the hormonal drug Tamoxifen, which destroys oestrogen -  my prognosis for disease-free survival in 5 years’ time is about 90-91%; put another way, I have only a 1 in 10 chance of the cancer coming back within the next five years.  
On the other hand, at my particular age, with no family history of the disease, I only had a 1 in 25 chance of getting breast cancer in the first place…

And just to cheer you up even further, after extensive research I have been able to establish that this is quite definitely the best Hamster Viking Funeral video on YouTube...




Wednesday, December 26, 2012

Keeping the home fires burning...

Day 17

General status update

Hair: No change
Nausea demon: Apparently, he has ISSUES (according to the Chemo Muse, who is the only person he talks to, now that he has stopped talking to me). But she won’t tell me what they are, and he’s not talking to me. Excellent..
Chemo Muse: Also getting a bit stroppy, now that I keep knocking her out with Lorazepam. She regards this as thoroughly unsporting behaviour. 
Sleep, lack of: Slowly being remedied – hope to catch up before the second chemo cycle starts next week. 
Anxiety level (1-10): Anxiety suspended for the Christmas Holiday. 
State of mind: Christmassy, and happy; happy Christmassy, even.
 
For family reasons today, rather than yesterday, was deemed Christmas Day for R and me here in Gurkha Towers... 

We live in a flat in an old mansion block in Hammersmith, the security staff of which consists entirely of ex-members of the Brigade of Gurhkas who, as any fule know, are some of the world's most fearsome warriors.  I cannot tell you how thrilled I was when, shortly after moving into R's flat, I remarked upon the fact that all the guys on the desk seemed to be Korean, and wondered why that should be, and R told me that they were in fact Nepalese, and ex-Gurhkas to a man. Yes, we are guarded 24 hours a day by trained killers - how good is that? It's rumoured that they have a shrine to Joanna Lumley somewhere in the basement, but that may just be an urban myth.

... and hence was also deemed a Blog Holiday, as we had other, Christmassy things to do. So I will just leave you with a few images of my life, as it was two years ago, and as it is now.

Aegean winters can be quite cold, and wood is by far the cheapest fuel, usually burned in sobas - wood burning stoves. In Ayvalik, where I lived, the wood was delivered by the ton - by horse and cart. I would go to the wood yard, pay for the wood, wait while it was loaded, then lead the woodman and his horse and cart back through the labyrinth of narrow cobbled streets to the Camel Barn.


 

The wood was then stacked in a neat pile in the courtyard, usually with the help of some  little boys living nearby who, mysteriously, seemed to love carrying bits of wood about above all other things..
 

 
Inside the camel barn is a big open fireplace topped by an enormous seven metre high rhomboid chimney, constructed by an excellent Kurdish stonemason called Apo, when the barn was being restored. And through the cold months of January and February I would make a big log fire every night,
 
 

 much to the delight of my dog Freddie, and cats Flossie, Layla and Ollie.
 


  At the other end of the barn, which is about 10 metres long, I installed a big cast-iron 'soba', much more fuel-efficient than the open fire, under which Ollie loved to lie:


 
Now that I’m living back in London again, on the fourth floor of a block of flats, in a smokeless zone, log fires are no longer an option. I miss them enormously. However, the other day I found a really nifty substitute, outrageously kitsch, in quite atrocious taste, no doubt, but I really couldn’t give a monkey’s – this DVD was one of the things R found in his Christmas stocking this morning, but if I’m honest, I really bought it for me:
 

 

It’s silly, but it’s lovely, and psychologically calming (it even has a sound track of authentic log fire spitting and crackling noises), and it takes me back to my Camel Barn, which I won’t be able to visit again in reality for some time (nb Freddie and the cats are still in residence, being looked after by friends who are Camel Barn- and animal-sitting on a long term basis).

Belatedly, I’d like to wish you all a very Merry Christmas – thank you for reading the blog, and I hope you’ll continue to do so over the next few months, until the chemo is finally done.

Tuesday, December 25, 2012

If there's anything I can do, anything at all..

Day 16: A whole new concept in charity fund-raising emerges

General status update

Hair: it’s day 15 of the first chemo cycle, and by now people’s hair has usually begun to fall out. Mine hasn’t, so we can reasonably assume that the cold cap is working; so far, anyway. The key thing is whether it will last past FEC 2 and 3.
Nausea demon: Still operating, albeit at a reduced level, but also being rather off with me, and I don’t have the foggiest idea why.
Chemo Muse: Fuming at being temporarily disabled by the dose of Lorazepam last night. Now seems to be girding herself up for the Next Big Push.
Sleep, lack of: Sleep deficit reduced by last night’s sedative-induced deep slumber. Grogginess today entirely worth it.
Anxiety level (1-10) Ratcheting up again – the next dose of chemo is in just over a week’s time, and then this manic merry-go-round will start all over again.
State of mind: Languid – it’s one of those post-Lorazepam days..
News from North Yorkshire: the beetroot macaroons were a complete disaster, and there has been a Very Unfortunate Incident involving a 5 kilo ham; the MC is unconsolable.
 

Long, long ago, when the world was young and so was I, and there were 9 months to fill before going to university after taking the Oxbridge entrance exams, post-A levels, in what was then called ‘3rd Year Sixth’, I raised money to fund my proposed travels, in what was genuinely a ‘gap’ year, by working in the canteen at the local hospital.

This was a pig of a job: much of it was spent behind the scenes cleaning out industrial-sized cooking vats which had contained stew, or mashed potato, not a very pleasant task. But it taught me an awful lot: what it is like to stand on your feet all day, and come home too physically tired to do anything but lie down; what it is like to work at a job you hate, just for the money it will bring you, and the useful things that money will do; and what it is like to be regarded, just because you’re wearing a catering overall and hat and standing behind a counter making toast for busy doctors and medical students, as Not Very Bright, because who would be doing a job like that if they weren’t really, quite, you know, thick?
 
In the end, I didn’t do any gap-year travelling, but the money I earned was useful, and the experience gained was invaluable; I have never forgotten that, having gone to university at a time when the fees were paid by the tax-payers, my very privileged education at Oxford was partly funded by the taxes of people who never got the chance to go to university, and did jobs they hated, because they had no other choice.

In those days, students who wanted to go off travelling, in gap years or university vacations, always got jobs to fund themselves, whether in factories, bars, hospitals, shops or working on building sites. It was what you did. I was recently appalled to discover that the Zeitgeist has changed, and that many young people regard it as perfectly acceptable TO ASK OTHER PEOPLE TO PAY FOR THEIR FUN. I was alerted to this when a friend mentioned that she had bought some rather expensive tickets for a fund-raising concert organised by one of her daughter’s school-friends, Chloe, but that it was ‘all for a terribly good cause’.

How enterprising of her’ I said. ‘Which charity is she raising money for?’

Oh, she wants to go to Ecuador in her gap year.

And do what?

I think it might be counting butterflies, something like that – you know, it’s one of those voluntary work things, but you have to pay about a thousand pounds to go and do it for a month. It’s a fabulous place apparently, a national park, on the coast, amazing scenery, and she’ll be able to go snorkelling, and whale-watching.’


Well, well, lucky old Chloe, I thought. She gets together with her mates and plays her flute for a couple of hours, and then gets given enough of other people’s hard earned money to enable her to go and have a lovely holiday in Ecuador for a month, saving the butterflies and going snorkelling.

Call me old-fashioned, but there seemed to me to be something fundamentally wrong with this,  given that the ‘good cause’ that the money was being raised for wasn’t a charity – it was for Chloe, a highly privileged, expensively educated girl, who would now have some ‘voluntary work’ to put on her CV, and be able to hold her own when she finally got to university and started engaging in competitive ‘gap yah’ storytelling
in the Union bar. I rather doubt unskilled 18 year olds make much difference to the butterflies of Ecuador in a 4 week stint – by the time they learn enough to do anything useful, it’s time to return to Notting Hill, or go on to Phuket and develop their drug-taking skills further.

I’ve just looked on the internet to make sure that I heard right, and am not making this up, and it gets worse; there are several sites dedicated to telling teenagers planning gap years how to get other people to pay for their fun abroad, because ‘working… can be difficult’, as is helpfully explained in the paragraph below from a site called gapyear.com:

Working long hours to save for your travels can be difficult, but there are other ways to club together the pennies for a gap year. Fundraising for your gap year is the art of getting loved ones and strangers alike to part with their cash to fund your travels or voluntary work”

Yes, working can be difficult, my children: that’s why it called work, but generally, it’s how you get money in life to do the things you want, so why not consider it as an option, eh? 

Funding gap years for teenagers with an extraordinary sense of entitlement is one thing, and real charity fund-raising is another, but I think it’s fair to say that a lot of people ask you to sponsor them, albeit for very good causes, for things they’d quite like to do anyway, whether it’s going for a 3k run dressed as Santa



trekking along the Inca Trail in the Andes…

 

Or racing to the South Pole on cross-country skis, dragging sleds.
 


 

All good stuff, for very worth-while causes: tasks which are challenging to do, and also fun, and give people a sense of achievement and accomplishment. 

I’ve got an even better idea, though, which occurred to me just the other day: why not get sponsorship for doing something you DON’T want to do, but have to do anyway? For something that no one in their right minds would ever do voluntarily unless - well, unless their life were at stake.
 
Like, for instance, my chemotherapy treatment.
 
 
SPONSOR MY CHEMO!



 I have, accordingly, set up a fundraising page on Virgin Money Giving, asking people to sponsor me to do something I really don't want to do: something I have always feared, something that is making me feel Very Bad Indeed, and that will more than likely not do me any good, anyway -

Chemo will help only 7 or 8 women out of a hundred who are my age, and have my particular type of tumour characteristics.  For the remaining 92/3 it will make no difference whatsoever, but unfortunately the current state of medical knowledge has no way of differentiating those who will benefit from those who won’t, so EVERYONE has to do it (you can refuse, of course, but not many do). I will never know whether the chemo has been of any benefit to me or not, unless the cancer returns (which would be a fairly clear indication that it hadn’t). If it doesn’t return, that doesn’t necessarily mean that the chemo worked: it might never have been going to return anyway, or might have been prevented from so doing by the other treatments I will be having later, i.e. 3 weeks of radiotherapy, and then 5 years of taking the drug Tamoxifen. There is no way of knowing.  

However, I have no real choice but to do it - the alternative treatments on offer, which I will talk about another time, are worse in terms of possible long term side effects.

So, I'm asking people to sponsor my 100 days (approx.) of chemotherapy treatment for breast cancer.

 Any money raised will go directly to The Haven, an extraordinary charity which provides, free of charge, a wide range of support and therapies to improve the wellbeing of women (and men) with, and beyond, breast cancer. Their specialist nurses and experts in nutrition, exercise, emotional support and complementary therapies provide individualised, in-depth programmes to help with the physical and emotional side effects of breast cancer treatment. The Haven receives no funding from the Government; it survives solely on charitable donations.
 

The London branch of the Haven is close to where I live, and since I was diagnosed with breast cancer at the beginning of September 2012 they have helped me more than I can say, for which I am hugely grateful. I will write about my experiences of the Haven later on in this blog, but if you’d like to know more about them now you can find it on their website at

 
I have no choice but to endure chemotherapy, and whatever unpleasant physical and mental side effects it brings, without knowing whether it is actually doing me any good; it would be an enormous morale booster, however, to know that by raising some sponsorship money whilst doing it I could give something back to the Haven and, by so doing, help people who are diagnosed with breast cancer in the future. 

1 in 8 women in the UK will be diagnosed with breast cancer at some time in their lives, usually in the later years; one of those people will almost certainly be someone close to you or, if you're unlucky like me, might even be you.

When you tell people that you have cancer, they all say the same thing: ‘Please let me know if there is anything I can do..’.

Usually, there isn’t.  

But in this case, there is: making a donation to The Haven, via my fundraising page (and telling other people to read the blog – the more readers, and potential donors, the better). Then even if my chemo does turn out to be a waste of time, it will still have achieved something useful.

I know times are hard for a lot of people now, but if you enjoy reading the blog, and have got a few quid you can spare, please drop by my fund-raising page on Virgin Money Giving, and make a donation, however small.  

Believe me, if it hadn’t been for the psychological help the Haven has given me since I was diagnosed with breast cancer, I probably wouldn’t even be doing the chemo, or writing the blog: I’d have run away to Goa long since and would be sitting under a palm tree right now eating mangoes, and continuing to pretend that this simply was not happening to me, and that if I ignored it long enough, then it would just go away of its own accord.


Like cancer does…

Not.

 
My fundraising page address:
http://uk.virginmoneygiving.com/ChemoNights