Share a Little of that Human Touch

Day 43  

General status update

Hair: Preening itself – the oncologist says if it hasn’t fallen out by now, then it probably won’t.

Nausea demon: Snowbound in Bilbao, according to his increasingly frantic text messages.

Chemo Muse: Wants to stay in north Yorkshire, pretty much has to be dragged onto the train kicking and screaming, as does

Chemo Brian: Traitorous B***ards

Fatigue/weakness: Mental tiredness is the worst at the moment – every atom of my being is longing for all this to stop.

Sleep, lack of: Thinking about simply sedating myself for days 3-10 of FEC3.

Anxiety level (1-10): The anxiety demons are a flock of large birds of prey wheeling and screeching around my head with their claws extended and beaks always dangerously close, and what they’re screeching is ‘FEC3! FEC3! FEC3!’

State of mind: And the raven quoth ‘FEC3!’

Despite the fact that most of the north east of England was blanketed in snow during the night, there is no problem getting into York at 9am this morning – BigSisFo approaches driving in the snow with all the gaiety and zest one might expect of a woman at the wheel of a tank-like four wheel drive Land Rover – and trains to London are all running on time.

Unfortunately.

I collapse sobbing into my sister’s arms at the station – a combination of hormones and fear, I think: and the horrible reality of leaving behind the sanctuary of BigSisFo’s house, which somehow seemed like a cancer and chemo free zone, and having to get on the train and travel back to the coming horribleness of FEC3.

We are back in plenty of time for the appointment with the oncologist at 3; the clinic is allegedly running 30 minutes late, and we are finally called in nearly hour and a half late. Stan isn’t present, sadly: today it is his boss, Dr K.

Unfortunately, it soon becomes apparent that Dr K and I have completely different agendas for this meeting. Mine is to ensure that I get all the anti-nausea drugs I need up-front this time, so I don’t have to crawl around afterwards begging for help from various largely uninterested parties.

 Dr K’s agenda is to reorganise things so that chemo patients don’t come in and see a doctor 1 or 2 days before each chemo treatment, as is now customary at the Charing Cross Hospital – she explains that ‘nowhere else’ does this, and she wants to alter the arrangements for her chemo patients so that they just come in to see the highly capable chemo nurse beforehand, have their bloods done, and then go on to have their chemo the same day, thus saving lots of time for everyone.

Especially, it would seem, the oncologists.

This, she explains, will become the norm at Charing Cross in about 6 months’ time anyway, and this proposed reorganisation is presumably why we have been summoned into her august presence, and not Stan’s. Obviously, this is the first I’ve heard of it and there seems to me to be one big glaring problem with the idea: if you need to have a discussion, as I do today, about exactly which drugs should be prescribed to you this chemo cycle to deal with your on-going post-chemo severe nausea and vomiting problems, then a nurse can’t do that, as only doctors can prescribe the drugs, or make any changes to your current drug regimen. And if you were trying to do it all on the same day, with the big time lapse in finding doctors to prescribe drugs, and then having a long wait for the hospital pharmacy to dispense them… hmmmmm. Seems like this organisational change will make things easier and save time for everyone except any patient who needs anything even slightly out of the ordinary.

I don’t quite grasp all this at the time, what with being tired and anxious and taken unawares and completely terrified about FEC3, and we move on to discuss how FEC1 and 2 had gone.

Here Dr K shows an interesting ability to completely dissociate ideas by

a) apologising, seemingly genuinely, for the two consecutive post-FEC nausea crises and concomitant extreme difficulty I had in getting any help, and then

b) seeming to find it tiresome that I insist on going through in detail all the anti-emetic drugs that will be administered to me both intravenously before the chemo, and afterwards to take home, and

c) expressing surprise that I should require so many different anti-emetics, given that ‘most people’ don’t suffer for very long with ‘delayed nausea’.

R points out to her that I had been suffering from nausea pretty consistently throughout 2 entire cycles of chemo. It is not ‘delayed nausea', it is nausea that never stops. In the end, the doctor prescribes what I ask for, but gives the distinct impression that I am being unreasonably demanding, and that she doesn’t feel it is necessary.

‘So, you’re getting the intravenous FosApprepitant beforehand– and you also want Cyclizine and Domperidone, as well as Ondansetron, to take home?’

I try to explain that after the 2 previous occasions when I have been through long, unpleasant experiences, whilst feeling very sick and distressed, trying to get help from a variety of people who weren’t very interested in giving it to me, I really do not want to be put in that position again after FEC3. Given my nausea history, I need to be prepared for every contingency. And yes, last time I did need to take all those drugs, for far longer than the usual 3 days, simply in order not to vomit.

 

You know what? I am so tired of all this, and so frightened of what is going to happen after FEC3 on Wednesday, and so fed up with doctors who don’t really listen, or engage with what you are saying, and give the impression that they think you are either a) greedy for anti-emetics or b) a hypochondriac with imaginary nausea.

 

I did not choose to have an unusally high propensity towards nausea, and the extreme distress the chemo-induced nausea has been causing me is greatly compounded by the difficulty in getting any assistance with it after the chemo has been administered, if the original set of anti-emetic drugs is not doing the job. That’s why I went into the oncology clinic today determined to sit down with Stan, who is very amenable to discussion, and LISTENS, and thrash out the definitive list of anti-emetic drugs I need so that no further nausea- related emergencies occur during the other four cycles of FEC.

But today I didn’t get to see Stan.

I come out of the hospital feeling exhausted, defeated, disbelieved and un-listened to – and clearly regarded as a nuisance chemo patient, because my reactions to the drugs fall outside the ‘normal’ parameters. Don’t they teach doctors in medical schools about statistical outliers?

It’s not just the treatments that make you feel worse than the cancer - sometimes it’s also the doctors…

 

Some comment on this from R, who is a Professor of Bioethics, and was formerly Reader in Medical Ethics at the Imperial College Medical School, based at Charing Cross Hospital and St. Mary’s Paddington:

‘Dr K is a medical doctor with a PhD, and she’s very, VERY clever, and her real interest is probably in extreme cases and academic medicine, not bog-standard early breast cancer cases like you with 'favourable' tumour characteristics who are undergoing FEC 75, which is the most basic chemo regimen for the most basic of breast cancers. She’s running a clinic where she gets 20 people a day coming in complaining about nausea and their hair falling out. It may be very important to you, but to her it’s same-old, same-old, ‘why are these people whining when they could be suffering from much more aggressive cancers and enduring much more aggressive chemotherapy?’. Constant debilitating nausea just doesn’t cut it. Should you have any kind of really extreme medical emergency, you’ll probably find that she’s terrific’

So, there we have it: Dr K’s agenda today was to reorganise her chemo patients so that after the initial consultation, she doesn’t actually have to see the boring ones with the boring tumours as they go through their boring bog standard chemo regimens. Their problems, if any, are so small THEY DON’T COUNT.

What is so refreshing about Stan, who is not yet an oncology consultant, merely a registrar, is that he has not yet lost the human touch – he listens, he recognises your distress, he remembers that although you may be going through an experience that is very common amongst breast cancer patients, it is also unique, and uniquely distressing, to you.

And then he does something about it.

I’m really worried about what’s going to happen to Stan when they promote him, as they surely will..

 

 

 

And this song is dedicated to R, who also knows all about that Human Touch xx

 

The Blind Swine - an atypical north Yorkshire experience

Day 41 

General status update

Hair: Hair is a bit nervous in north Yorkshire, what with the extreme cold. It is anxious that it might be fixin’ to break off when frozen. 

Nausea demon: still away in Bilbao –  he's fixin' to come back on Tuesday, the Eve of FEC3.

Chemo Muse: she LOVES it here in north Yorkshire, since BigSisFo’s life is so much more interesting than mine, and is lobbying for an extended stay, which deep down she knows is impossible, as we have an appointment with Stan the Oncologist back in London tomorrow 

Chemo Brian: also totally enchanted by my sister’s house, where there are huge leather sofas for him to sprawl on, and roaring log fires on which he can toast marshmallows. It may be quite a job to persuade them both to get on the train back to London on Monday morning..

Fatigue/weakness: Even though I gave most of my cocktails last night to R, it is fair to say that the chemo cannot be held entirely to blame for a certain sense of fragility this morning. 

Sleep, lack of: now building up a sleep bank before the next dose of steroid mania on Wednesday. 

Anxiety level (1-10): We took Hank for a long walk in the snow around a frozen lake this afternoon, and the MC is cooking roast beef and Yorkshire puddings this evening. And, as I sit writing this, he has just brought me a glass of Manzanilla, with some olives and Jamon Iberico, in case I need a little something to keep me going until dinner-time. Life at BigSisFo's is the Antidote to Anxiety.

State of mind: Much improved. Have hardly given a thought to cancer or chemo for the last 24 hours; it’s so good to be out of London,and back in God's own county.

 

 

Previously on Chemo Nights: on Saturday evening disaster strikes as the MC, hanging his poor, beautiful, tragic dead pheasants (not that I’m biased in any way on this matter, obvs) in the wine-cellar, discovers that a frozen pipe has burst in the adjoining outbuilding, and that a fairly major flood is underway.

Now read on:

He comes into the kitchen and informs BigSisFo of this news, in the manner of one who expects her to do something about it, sharpish. BigSisFo, who has had it up to here with dealing with domestic crises recently

 – what with having had to cope single-handedly with the extended and very unpleasant north Yorkshire Rat Apocalypse  while the MC was away in London being corporate far, far away from the terrible, unforgettable smell of decomposing rat -

ignores this very strong hint: after a brief trip outside to inspect the catastrophe-in-progress, she returns and recommences pouring the champagne with which we are just beginning R’s and my early birthday celebrations, saying she will stay here and continue to look after her little sister, WHO HAS CANCER, while ‘you boys’ sort things out outside.

R goes pale, realising he is being called upon to metamorphose instantly from Professor of Bioethics into Man of Action with a sub-speciality in fixing outdoor plumbing emergencies in the dark and freezing cold; however, he rises to the occasion and announces ‘We just need to find the stopcock’, before striding outside into the dark and the snow with the MC and Hank, who is now barking furiously as he realises that something exciting is happening.

BigSisFo and I remain in the kitchen, nestling close to the warmth of the Aga; we drink our champagne and eat olives, meanwhile musing sadly on MamaFo’s long ago, purposeful suggestion that it would really be very helpful for everyone if one of her daughters could manage to marry a plumber.

Much to our surprise the stopcock is located, and the water turned off, within about 15 minutes, and the men stride back in exultant at this proof of their manly skills in aquatic crisis-handling; we are then able to resume the planned birthday festivities, the next stage of which is going out to dinner at a recently opened temple of molecular gastronomy in York, called ‘The Blind Swine’, a place now so popular that BigSisFo had to book 3 months ahead to get this table on a Saturday night.

How to describe this restaurant-slash-cocktail bar which combines the steaming frozen nitrogen flourishes of Heston Blumenthal with a screaming Heavy Metal soundtrack and a chef and brigade de cuisine with more tattoos between them than a convention of Hell’s Angels?

BigSisFo sits down, takes in the scene around her and pronounces: ‘Oh. My. God. It’s Hogwart’s meets Spinal Tap on ACID.’

We look at the drinks menu, which includes a short and learned dissertation on gin, and find cocktails that are named with lines from the book ‘American Psycho’ and have lists of ingredients that stretch credulity:

‘Brandy, hay syrup, port, quail’s egg’.

We decide against that one.

My sister goes for the ‘I like to dissect girls – did you know I’m utterly insane?’ cocktail, which consists of a relatively subdued combination of gin, cranberry, lime, Cointreau and orange bitters.

In a spirit of adventure I opt for the ‘Ziggy Sorreldust’: gin, sorrel juice, apple, lemon, Parma violets and protein lime. Somewhat to my surprise, this turns out to be one of the most divine things I have ever tasted.

I say so, foolishly.

BigSisFo immediately grabs and tastes my drink, whines because it is better than hers, and tries to steal it, whilst I calculate how many hundreds of times similar scenes have been played out during our decades of sisterly co-existence, sibling rivalry, and occasional all-out warfare. R, an only child, looks on, bemused.

The food, and its service, is surreal.

There is no choice about what to eat – the chef, who only cooks three nights a week, and then for a maximum of four tables and 20 people, offers a tasting menu of 8 courses, accompanied by cocktails devised to complement the exquisite morsels of food. You can order wine or beer as well if you wish, but it doesn’t seem appropriate to mess with the chef’s Grand Plan, particularly as whoever devises the cocktails is clearly some kind of crazed genius.

                               photo from the Blind Swine website

There was a time in my life when I regularly went to cutting-edge restaurants, but in those days they didn’t involve spectacular feats with clouds of steaming frozen nitrogen; this is cooking as performance art or religious ritual, each course cooked in full view of the diners and set ceremoniously before you by the rock’n’roll chef and his body art-adorned  acolytes.

The first plate put in front of us contains a thimbleful of carrot sorbet, surrounded by carrot crisps; over this is poured hot carrot soup from an alchemist’s glass flask, billowing clouds of steam.

It is all about the carrots, obvs.

It is essence of carrot, 3 different ways.

It is delicious.

The accompanying cocktail is some kind of mojito, with rum, elderflower syrup and frozen shredded cucumber, which tastes an awful lot better than it sounds.

BigSisFo gazes across the room at the tattooed, muscled arms of the chef and wonders aloud whether he works out.

  Photograph © Mark Ivkovic

‘I expect he does an awful lot of chopping’ I say.

My sister, who after champagne and a couple of industrial strength cocktails is approaching a state which might be described as fairly well-oiled (although nowhere yet near completely rat-arsed) observes that the chef, who sports a startlingly blonde 70s glam-rock hair style, looks like a tattooed all-in-wrestler in a woman’s wig.

Feeling that this is a trifle unkind I point out, truthfully, that he also has the face of a Botticelli angel.

R, our musical expert, argues that the chef looks more like the guitarist Mick Ronson, of David Bowie fame, than anything one might find in Renaissance art,

but adds that his closest doppelgänger has to be Dougal, of the Magic Roundabout.

 

The MC’s expression on hearing this exchange of views is pained beyond belief.

 ‘You do realise this guy used to cook at NOMA?’ he asks, with the sad but resigned air of a man fated to be surrounded by culinary imbeciles at moments of exquisite gastronomic intensity

 

 For those who do not follow such matters, NOMA is a now legendary Danish restaurant regarded as the second best restaurant in the world - after the late lamented El Bulli - by devotees of its intensely seasonal and often foraged food, where each plateful represents its own tiny ecosystem, and hay is often mentioned, although I’ve never been entirely clear in which precise context .

The rest of us, duly chastised,  shut up and apply ourselves with due reverence to the second course, which pays homage to the Spirit of Beetroot in the form of a playful melange of roast beetroot, beetroot puree, millet and pine nuts, decorated with a light dusting of vanilla snow.

It is at this moment that BigSisFo’s phone rings, and it becomes apparent that the as-yet-unidentified person on the other end of it is very upset indeed.

As we commence the third course - pea sorbet with a sliver of Iberico ham, aged for 15 years (the ham not the sorbet) with smoking hot pea and ham soup poured over the top, accompanied by Pain de Campagne with whipped black garlic butter – my sister says things like ‘He did WHAT?’ and ‘Oh my God, that is appalling behaviour’ and ‘I’d like to string that little bastard up by his BALLS’.

This conversation goes on for some time, and we are drinking our next cocktails – Sorrel Sours, AWESOME – and digging into veal sweetbreads with black garlic puree and what is possibly a poppadum made of dried white cabbage, by the time she finally rings off and explains to the rest of us what is amiss.

It transpires that a young female friend is undergoing an acute emotional crisis in  Texas, involving a travelling musician who has turned out to be a devil with the ladies as well as his bull fiddle. We all sit aghast as BigSisFo relates this tale of woe, and I reflect that it as well for the Good Ol’ Texas Boy in question that the Atlantic currently lies between him and my big sister.

Happily the next cocktail -  the ‘Chipotle Swinereiser’ a confection of rum, lemon, chipotle bitters, and blond beer with an orange twist  - arrives in the nick of time to take the edge off her ire, followed swiftly by more food: a king scallop atop a slice of boudin noir, resting on a tiny pillow of cauliflower puree and a slick of curry oil. The food has been getting better and better with every course, and this is just perfect.

It is perhaps unfortunate that the MC chooses this moment to observe that anyone who chooses to enter into a relationship with a young, good-looking male musician who spends most of his year on the road touring must surely be aware of the unlikelihood of such a union turning out to be of a monogamous and enduring nature.

BigSisFo turns on him, eyes flashing:

‘WHAT’ she hisses - she hisses magnificently, my sister, like a female cobra on steroids- ‘do you mean by that? Are you suggesting that this is in some way HER fault?’

I will draw a veil over the ensuing conversational carnage, and the response to my own suggestion that being done wrong by a bull fiddle player in Texas must surely count as a splendidly authentic blues experience, even if your name does happen to be Xanthe.

No, let us move swiftly on, as we do in the restaurant, to the next course: hanger steak topped with gremolata, accompanied by herbed gnocchi. My notes have become rather illegible and a little bit sticky by this point, but I think it may well have been accompanied by a cocktail, name unrecorded, composed of Chartreuse, Cointreau, gin and lemon juice.

Next, a playful take on egg on fried bread: a tiny piece of French toast, with a round white slice of Jerusalem artichoke topped with a little yellow dollop of lemon curd,  served with raspberry ketchup. This course is presented without cutlery, and we all end up licking raspberry ketchup off our fingers.

Just as I’m thinking that this was a delightful finale to the meal, the insanely delicious Beurre Noisette Ice Cream on a bed of yogurt cake scattered with shards of cinder toffee arrives, followed shortly afterwards by the final round of cocktails: espresso martinis made of God-knows-what, drunk with a straw poked through a hole in the layer of cling-film covering the glasses to trap in a layer of smoke.

I think.

One of the lesser-tattooed wait-persons has assured us, earlier in the evening, that the strength of the cocktails accompanying the meal is only half that of those on the bar menu; it is, nevertheless, a sign of the stamina of the Fo women and their consorts that as this extraordinary meal draws to a close we are all still sitting more or less upright in our seats and capable of conversation, of a sort.

It’s a very good thing that none of us is driving home, though.

The taxi takes us home safely though the snowy lanes of north Yorkshire, and Hank’s excited barking greets us as we slither and slide over the frozen snowy gravel towards the back door. On entering the kitchen we find Hank in his customary place on his special fake-fur blanket next to the Aga.

As I walk towards him Hank gets up, tail wagging, with some kind of large purple rag clenched between his huge, slavering jaws. 

Seconds later I recognise the shredded purple rag as what used to be my cardigan, left carelessly slung over one of the kitchen chairs when we went out earlier; as this realisation dawns I hear, as from a great distance,  the sound of my friend Danielle (aka @Pochyemu), whose American passport was eaten by my dog Freddie in Ayvalik three years ago, laughing and laughing and laughing…

 

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!

If you believed they put a man on the moon, man on the moon…

  

Day 9

General status update

Hair: no change

Nausea Demon: confined to his room, and sulking. Playing loud rap music to make his feelings clear

Sense of smell (NEW!): magnified by about 300x. I can smell cooking smells from 200 yards away, and they TURN MY STOMACH. I am turning into a dog. A dog with nausea.

Anxiety level (1-10): They’ve sedated me, dude. And I love them for that.

State of mind: None, currently

 

 

So I’m on the phone first thing Monday morning to Sister Chemo at the Chemo Day Unit (Monday-Friday, 9.00 am -5.00pm)  - the so-called Chemo 24/7 Emergency Help Line, as you will remember, having been mysteriously unavailable over the weekend  - 

requesting urgent assistance, given my continuing acute gastric distress, and the fact that my supply of anti-emetic drugs, which should have lasted for a couple of weeks, is about to run out.

Sister Chemo is very nice, but it is quite clear that she will not be providing any active assistance to alleviate my distress; this kind of thing, it seems, is Not Her Problem.

 ‘Oh, your GP will give you something for now,’ she says, ‘and then when you come for the oncology clinic appointment in 2 weeks’ time, before your next dose of chemo, you can talk to the consultant and get it sorted out, if it’s still a problem.’

She then adds, in a confidential tone: ‘I tell you what, though, you should ask your consultant for a drug called Fosapprepitant for your next chemo cycle – it’s MARVELLOUS.’

 

‘I’ve already had that’ I reply, perhaps a little sourly. 

‘Oh dear’ says Sister Chemo ‘OH DEAR’.

So I call my GP’s surgery, tell the receptionist I am a chemotherapy patient with severe nausea problems who cannot come into the surgery right now because of the infection risk, and request a telephone consultation with the doctor as soon as possible.

She sighs.

‘We’re very, very busy right now’, she says ‘So he can’t talk to you today, but I can fit you in for a telephone consultation between 5.30 and 6.30pm tomorrow evening’. So that would be another 36 hours of unrelenting nausea without any help. I had been told that I should DEMAND to speak to the doctor if necessary, and that they are obligated to let me, but I’m too weak and upset to argue at this point, and I don’t want to break down and start weeping uncontrollably on the phone. Or begging.

 

So much for the urgent and immediate response to the needs of chemo patients – it hasn’t been a great start. By now I have tried all the prescribed official channels and got Absolutely Bloody Nowhere. So it’s time to try something else. I have one last telephone number I can try – at my last oncology appointment before chemo I had discussed with Stan the whole ‘How do I get help if things get bad between hospital appointments?’ issue, and he had given me the Chemo 24 hr. Emergency Helpline number, and reassured me that it was manned AT ALL TIMES, and that I would never be more than a quick phone call away from help.

 

 As an afterthought, however, he then gave me the number of the oncology consultants’ secretary ‘just in case’, saying that if all else failed I could give her a call, she would relay the message to him, and he would send a scrip down to the hospital pharmacy to issue me whatever meds I required. This would only work on a week day, obviously.

 

Calling this number is what I now think of as the Chemo Joker – it saved me.

 

I called the number, began talking, and then burst into tears. Through the sobs and the hiccups, while she made soothing noises and tried to calm me down, I explained to the oncology secretary - a truly wonderful woman called Dina whom I now love very much - the extent and duration of my nausea predicament, its on-going status, and the fact that not only did I need to add some new, different meds, but that the ones I already had were going to run out by the following morning.

‘I’m putting this into an email’ she said ‘and I’m sending it to Stan immediately. Give me the number he can call you back on. HE WILL CALL YOU, I promise.’

Stan called back within ten minutes.

Finally, the cavalry had arrived.

He quickly assessed the gravity of the situation, including my by this point very precarious mental state (the mantra ‘Goa, Goa, Goa, run away to Goa’ was now repeating itself in an endless loop in my brain), and said he would prescribe me more of the Domperidone and another anti-emetic drug, Cyclizine, which often proved helpful in particularly recalcitrant cases of severe and continuing nausea. He then suggested, gently, that an anti-anxiety drug might also be helpful at this point, which was music to my ears. Something along the lines of a horse tranquilliser might be good, I said, but he decided to give me Lorazepam. Stan promised that the drugs would be available for collection from the hospital pharmacy by mid-afternoon.

 

AND THEY WERE.

 

As I’ve said before, Stan’s the Man.

 

I should add that he apologised profusely for the problem with the Chemo 24 hr. Emergency Help Line, which was apparently unprecedented - the hospital has been having computer problems, and it was being fixed today. My GP, when I finally spoke to him, also apologised for his receptionist and assured me that I can ALWAYS speak to him or another doctor the same day if I have any further problems. And he has put ALL the anti-emetic drugs on to my repeat prescription list, so I can get them immediately when needed. This makes me feel much, much more secure, given that there are 5 cycles of chemo to go, and if there is one thing that is certain, in addition to death and taxes, it is that the side effects of the chemo will get worse as it continues.

The Cyclizine is helping enormously: the nausea hasn’t gone away, and I think it may well stay with me for the entire 100 Days of Chemo, but the new drug has somehow made it bearable, which before it wasn’t. It’s very hard to describe – the nausea is still sitting in my stomach, I can feel it, I’m still queasy ALL the time, but it’s not so sharp. I am going to be able to live with it, which is just as well, because I have no choice but so to do. 

In the evening, after R had brought me the drugs, and I had been very effectively sedated by the Lorazepam (which brings an entirely new meaning to the expression ‘Chemical Cosh’), I googled Cyclizine to see if there was anything I should know about this new drug. 

And Wikipedia told me that Cyclizine was the anti-emetic drug chosen by NASA as the space emetic for the astronauts who made the first landing on the moon. 

‘There you go, then’ said R, looking up from his Killer Sudoku, ‘If it’s good enough for Neil Armstrong, then it’s good enough for you’.

 

 

50 Shades of Pink..

Day Three: The Chemo Fairy arrives, bearing gifts

General status update:
Hair - still attached, gradually defrosting
Nausea - moderate, no actual vomiting
Hiccups - intermittent
Unexpectedness stonedness - lovely surprise! At no extra cost!
Anxiety level (0-10) - sorry, what?
State of mind: Totally chilled, man.
 

I’ve had the first dose of chemo, I’m still in one piece, and I didn’t make a break for the airport – possibly because I was escorted to the chemo ward, if not exactly under armed guard, but with my partner, R, on one side, and my little sister on the other, both staying very close indeed as they marched me briskly down the Fulham Palace Road towards Ward 6 East at Charing Cross Hospital yesterday morning. 

I did suggest that I could make a quick detour to Pret to get some provisions for later, and meet them at the hospital, but this met with a very dusty answer – R went for the sandwiches, while my sister continued marching me down the road, thus eliminating any possibility of me doing a runner. Still, it was worth a try. 

The chemo ward was a nice surprise – comfort, calm, delightful nursing staff AND free bananas, always a plus. I was hoping to avoid the whole Pink Thing throughout this process - it just doesn't do it for me, and it's not compulsory, after all.  

Yeah, right.

 

 

Not only is the cold cap - with which you try to prevent, or at least delay for a while, your hair falling out - a particularly acid shade of Day Glo Pink, but the Chemo Chair, in which you recline in some comfort as the toxins are pumped into your veins, is also pink. Mine was, anyway:

The bright pink machine to the left of the chair is where the cold cap - or Ice Cap, as my friend Amanda has rather more appropriately dubbed it - is plugged in, and freezes your head down to about -7 deg C.

THERE IS NO ESCAPING THE PINK.

The first few minutes were spent playing with the remote control for the chair, obviously: it arranges itself into a number of different positions, and is very comfortable indeed. I'd quite like one at home, although I wouldn't want to upset the Ektorp, which has very adequately fulfilled, for several years now, my overwhelming need to be horizontal whenever possible. 

My chemo nurse, the lovely and impressively efficient Sister Elena, gave us an impromptu, and fascinating, lecture on how Romania had suffered under the yoke of various pesky imperial powers over the last two millennia. She does not have a good word to say about the Ottomans and really, who can blame her? I would very much have liked her to continue, and indeed encouraged her vociferously, but Elena saw right through this stratagem and moved swiftly on to the arcana of chemo and the dreaded Ice Cap, which makes grown men cry.

The protocol was very strict, and timed down to the last minute, viz: 

1)    A 30 minute infusion, by my special request, of the strongest intravenous anti-emetic drug known to man, Fosapprepitant - they even named it after me, apparently. This is very expensive, and usually not administered unless you have proved you really, really need it by vomiting continuously for 24 hours or so after your first dose of chemo. 

This seemed to me an inherently unsatisfactory arrangement for those of us particularly prone to nausea, so last week I put it to Stan, my oncologist, that I had already put in the requisite vomiting hours during the extended, highly unpleasant allergic reactions I suffered after the administration of radioactive dyes for various scans. Happily Stan accepted this argument, and agreed to give me the good drugs up front.  

A fine man, Stan. 

2)    Application of the Ice Cap, and initial, preparatory freezing of the head, to stop the chemo going into the hair follicles and making all your hair fall out. I was warned this would be very painful for the first 15 minutes, but that if you can keep going, your head will eventually go numb, and the pain recede. Some women rip the cap off, screaming, after 5 minutes. Stan told me that most men don’t even get to the 5 minute mark, which made me laugh immoderately.  

3)    Half an hour later, after repeated checks that the correct drugs are being administered, the sequential infusion of the 3 chemo drugs that constitute the FEC chemo regimen: Fluorouracil, Epirubicin and Cyclophosphamide.

      -  Between them they provide a dizzying (literally) array of possible side effects: moderate-to-extreme nausea, hair loss, severe fatigue, anaemia, mouth infections, including both ulcers and thrush, stomach pains, heartburn and indigestion, both constipation AND diarrhoea (covering all bases), bladder infections, conjunctivitis, skin rashes and extreme sun sensitivity, taste changes (all food tastes the same, of cardboard), your nails going black, thrombosis, changes in heart and liver function (not entirely surprising, that one). Oh, and loss of fertility.

     But don't worry, most of those are only short term - except the possible death from any random infection you may acquire while your immune system is down. Longer term effects include increased risk of heart disease and, as a particularly ironic twist just for me, of developing Acute Myeloid Leukaemia. My original fear of chemo was acquired after my former husband died of its sister disease, Chronic Myeloid Leukaemia -

     I have a PICC (Peripherally Inserted Central Catheter) line already installed in my upper arm, there to remain for the next 5 months. It has a narrow tube inside, leading up through a vein to the top of my arm and thence to a rather bigger vein near my heart, where there is a much greater volume of blood into which to dilute the poison (chemo drugs are so toxic that if you insert them into the smaller veins in your arm they may fry them, not to put too fine a point on it).

 

     Oh, and you’re still wearing the Ice Cap while this is going on; it takes about an hour, and for in-flight entertainment they give you a short and terrifying DVD to watch about the dangers of Neutropenic Sepsis in days 7-10 of each chemo cycle: during this time you effectively have no immune system, because the chemo kills all the good blood cells as well as the bad ones. Should you acquire any kind of infection

     

     - going out during this period is really not recommended, and best practice would seem to be compulsory fumigation for your loved ones immediately after they walk in the door -

 

     and your temperature rise to 38 deg or above, you must leg it to the A&E with your 'I am a cancer patient' document and demand to be admitted for tests and in-patient treatment. If you don't do that, death may follow quite rapidly.

 

     I've bought a really, really good digital thermometer.  
 

4)    After the chemo has finished, you have to keep the Ice Cap on for another hour to continue protecting the hair follicles from the various poisons that are by now coursing happily around your bloodstream, looking for stray cancer cells – ‘circulating tumor cells’ – to destroy. Many cancer patients have some of those left, apparently, even after surgery – they will have split off from the primary tumour site at an early stage in the proceedings and, if you’re unlucky, they find another organ to colonise. I read somewhere recently that you should think of the cancer cells as terrorists, and the chemo drugs as the crack SAS sharpshooters sent in to hunt them down and kill them. 

Yes, that works for me.  

I often find it hard to remember that the real enemy is the cancer, not the chemo, something obviously evident to my oncologist. A couple of weeks ago, after what must for him have a been a rather trying meeting, during which I inflicted on poor Stan a spirited and extended interrogation on the effectiveness or otherwise of chemo, exact long-term survival rates and the risks of iatrogenic illness, he said rather sadly to me as I walked to the door “Please remember that we are trying to help you get better, Caroline”

5)    Then they let you go home.

 

It’s quite a long day, but it doesn’t hurt – apart from the cold cap, and I didn’t really mind that all. After 5 minutes of fairly severe pain, my head was frozen, and for the remaining two and a half hours it just felt not unpleasantly cool and tingly.

This is not a competition, but I must admit to feeling slightly smug that I tolerated the cold cap so well, and even quite enjoyed it; it certainly distracted me from the chemo. Anyway, I think that makes me officially the 27th hardest woman on the Charing Cross Hospital Chemo Ward, currently. Those who can tolerate the nausea without the Weapons Grade anti-emetic drugs constitute the elite top echelon, obvs.

And just to prove I am not exaggerating about the ice, look:

 

 

That was the inside of the Ice Cap, after the chemo, and below we see the outside of my very frozen head. Not a good look, but needs must..

 

 

 

The only occurrence of note during the infusion of the chemo was that as the final drug, Fluorouracil, was going in I suddenly started to feel very, very Spaced. Out. There was something in the pre-chemo info mentioning 'possible feelings of light-headedness', but they were being too modest: for me, it was definitely at the 'off your face' end of the 'feeling woozy' spectrum.

 

Hey, no one told me that chemo makes you STONED…

 

I giggled all the way home in the taxi, saying to my sister ‘Wow, I can’t believe I’ve actually had CHEMO’,

and she replied ‘Yeah, and I can’t believe you’ve had chemo and been so CHEERFUL about it’.

Unspoken between us lay the memory of how I had been bouncing off the walls during the previous few days, and the 2 previous months of blank refusal to participate, fervent protests, and intermittent threats to catch the next plane to Goa and cure my cancer by sitting under a palm tree, consuming health-giving vegetable curry. And mangoes. 

And so to bed, for a blessedly vomiting-free night. 

Thanks for the good drugs, Stan. I owe you one.


Addendum, 23/12/12: I've just re-read this for the first time since I published it, and feel I should make clear that the cold cap is NOT compulsory - in fact most people don't do it. At Charing Cross they have had good results with the cold cap for people on the FEC chemo regimen (although it doesn't work for everyone), my oncologist encouraged me to give it a go, and my chemo nurse seemed more than happy to administer it; I'm told, however, by my online chemo 'buddies', that at some hospitals the chemo nurses tend to discourage people from trying the cold cap, telling them it's a waste of time, because it means additional work for them - a patient who uses the cold cap is there for a couple of hours longer than one who doesn't, and there's a lot of faffing about fitting the cap, and operating the machine. For anyone reading this who is about to start chemo, and whose hospital in theory offers the cold cap, then don't let them put you off if you want to give it a go - it is your right to do so.