The scream

Day 91

General status update

Fatigue/weakness: overwhelming. I just can’t write today. I felt fine this morning, but now I’ve been poleaxed by tiredness, and Chemo Brian has fogged up my thought processes. The rest of them still haven’t come back from playing football. They’re probably in the pub.

  

This much I know: the coming week is going to be gruesome.

On Tuesday I will be having root canal treatment, on Thursday I will be having my fifth dose of chemo, and by this time next week the steroids will have worn off, the full force of FEC5 will be unleashed, the toxins attacking all my weakest points, and I will be becoming increasingly demented - yet again. It’s happened four times already, and it’s going to happen again: I’m tied to the railway tracks and there is nothing I can to do avoid the oncoming FEC express thundering towards me.

This evening, I don’t feel strong enough even to contemplate all this, let alone endure it; as is happening increasingly often, in the last couple of hours I’ve been sideswiped by the fatigue that comes with chemo, and I’m wondering if ‘chemo brain’ is really starting to affect me. I just can’t seem to think straight.

There’s always the possibility that it might be another infection incubating, of  course – that would truly make this week complete, wouldn’t it?

OK, time to get a grip: early night, rest tomorrow, gather strength for the ordeal ahead, and enough with the infection paranoia, although that’s an occupational hazard of having chemo, especially at this time of year. It’s very hard not to obsess over the slightest physical sign that all may not be entirely well, when there’s so much riding on staying free of further infection.

I’m going to lie down with Chemo Brian now; I can’t do anything else. Maybe I’ll have more energy and be more coherent tomorrow.

I want my life back.

Please.

  

Counting the sunny hours..

Day 90

General status update

Jaw: It’s more or less stopped twing(e)ing, so we should be all set for the root canal treatment on Tuesday. Excellent. Yeah. Terrific.

Nose: Still unsightly, but no longer actively painful. Let’s face it, I look like the Wreck of the Hesperus anyway, at this stage. Vanity is no longer a consideration.

Hair: see above

Nausea demon: He’s got the job offer from the expectant wife of the Russian oligarch in Knightsbridge, but is now agonising about whether or not to take it, on the grounds that it might be compromising his artistic principles and ‘selling out’.

Anti-Tooth Fairy: trying to keep herself busy until the root canal treatment on Tuesday, she has borrowed Chemo Brian’s knitting needles (he got discouraged in the middle of the whole Knit Your Own Nativity Scene extravaganza when he just could not master the donkey, despite repeated attempts) The trouble is that whilst Chemo Brian knitting was cute, especially when he knitted and purled some of his ponytail after a tad too much wacky baccy, The Anti-Tooth Fairy knitting is just downright sinister – think Anna Wintour channeling Madame Defarge.

Chemo Muse: plotting something – she’s drawing up colour-coded timetables again, and not in a good way.

Despair Demon: We’ve kicked him out again until the root canal treatment –he’s bedding down on a bench in Hammersmith Bus Station, and not happy about it AT ALL.

Chemo Brian: he’s so beside himself with excitement about Bruce (see below), he even got off the sofa, briefly. He says he going to stay on specially for the concert, which is on the 30^th June, but I gather Chemo Brian often lingers on for some time after the last dose of chemo, anyway – fatigue and an addled brain frequently persist for several months after the chemotherapy treatment has finished.

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Fatigue/weakness: kicked in big time late this afternoon on our trip to the South Bank  – I had to sit down and rest in the Poetry Library at the Royal Festival Hall, which is a very pleasant place to be if you’re in need of instant rest and recuperation.. Did you know there is a spiffy glass lift there that sings to you? It’s wonderful, and was donated by the JCB company, and is painted in Big Digger colours, i.e bright yellow. So it’s like you’re being transported upwards in a singing, transparent piece of earth-moving equipment. Surreal.

Anxiety level (1-10): We’re not doing anxiety again until Monday night, OK?

State of mind: Looking forward to that light at the end of the tunnel, and devoutly hoping it will not signal a District line train to Upminster.

Have you ever seen one of those old sun dials that says ‘I only count the sunny hours’? That’s not something this blog could ever be accused of doing: it is documenting not only every day of what is proving to be a highly unpleasant 18 weeks of chemotherapy treatment, but also recalling the shock, pain and anguish of my encounter with breast cancer from the day I discovered the lump in my breast last August, through the surgery and beyond. Much of the subject matter is dark, and I know that some of it is painful to read.

When there are sunny hours, though, it is important to count them, not just to offer a little light relief, but also as a reminder that even when times are hard you can find little oases of enjoyment and enjoy small quotidien pleasures that help you to recuperate and regroup, and give you the strength to carry on.

They tell you to try to plan something nice for the third week of the chemo cycle, a treat that will help you remember normality during the few days when the side effects have subsided and you’re not feeling too bad. We had planned to go to the South Bank today, to listen to some poetry recordings at the Poetry Library, and to browse amongst the second hand book stalls by the river, but after a pretty brutal couple of weeks, with the nightmarish administration of FEC4, a few truly demented days with the side effects, and then the whole toothache extravaganza, I was at a fairly low ebb this morning.  I was having a hard time getting up my enthusiasm for anything,feeling unutterably weary, and just beaten down by it all. 

Then, out of the blue,  R produced some wonderful surprises: first, he came back from ‘getting the papers’ with a clutch of presents for me - some lovely, bright stripey socks, a particularly beautiful edition of the Alice B.Toklas Cookbook (by Serif Books, highly recommended) and a bottle of Calvados, my favourite drink. A little later, after tapping away on the computer for a while, he announced that I should keep Saturday, 30^th June free, as we were going to go out – he had got us tickets for the Bruce Springsteen concert at ‘Hard Rock Calling’ at the Olympic Park in Stratford, as an ‘end of chemo’ celebration.

You would have to know just how big a fan I am of The Boss to know how happy that made me.We reminisced, then, about how we saw Springsteen together last summer, along with our good friend Kirstie, at the now notorious concert in Hyde Park where Paul McCartney made a surprise appearance for the encore, but then a council official pulled the plug on the sound because the concert had run over time, and the Boss and Macca were left singing into microphones that no longer worked.

Then something occurred to me: ‘Was that before I got cancer?’

R nodded, and I was struck by a pang of grief for my lost life before cancer, remembering how my biggest problem that evening was sore feet from having to walk for miles in Wellington boots after the concert finished.

Tears came into my eyes, and I felt bad that I’d spoiled the moment.

R gave me a hug, and said, as so often, exactly the right thing:

 ‘That concert was before the cancer, and this concert will be after the cancer – by the end of June you’ll have finished chemo, finished radiotherapy, and be free from the hospital. You’ll be swimming again. When we go to see Bruce this time we’ll be celebrating you getting your life back, and us getting our life back..’

Yes – that’s exactly what we’ll be doing, and I just can’t wait.

R knows how to count the sunny hours, even when I forget.

And the trip to the South Bank was brilliant...

Fade to Black

Day 89

General status update

Jaw: the wretched tooth is still twing(e)ing – still not completely convinced that the American forces, in the shape of the antibiotic Erythromycin, are delivering the requisite Shock and Awe – and I’m still keeping my fingers crossed.

Hair: it’s BEGGING me for a trip to the hairdresser. It says it’s desperate for a trim and, chemo or no chemo, it’s ashamed to be seen out with me looking like this. Ah, how soon it forgets that we were expecting to be completely bald by now.

Nose: pretty much better. Am hoping that this particular side effect will not reappear during FEC5. A nose full of cold sores was just a chemo side effect too far.

Nausea demon, Chemo Muse, Anti-Tooth Fairy, Despair Demon, and Chemo Brian: have temporarily put aside their differences to form a five-a-side football team to compete in the West London Demons’ League. It’s a quiet few days for all of them before they’re back at work again with the root canal treatment (Tuesday) and fifth dose of chemo (Thursday) next week. They’re all out training on Brook Green at the moment, and they’ll be playing in their first match on Sunday.

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Fatigue/weakness: not too bad, considering

Anxiety level (1-10): anxiety assuaged by simply refusing to think about what is going to happen to me next week. Denial is one of the most powerful anti-anxiety remedies there is, and you don’t even need a prescription for it.

State of mind: as the days go on, and I feel myself becoming increasingly more demented, I begin to wonder whether that mightn’t now be something for others – possibly psychiatric professionals – to judge.

Previously on Chemo Nights: it is the morning of October 4^th, 2012, and I am in the Riverside Ward at the Charing Cross Hospital, waiting for my lumpectomy operation. The kindly duty anaesthetist has talked me down from my perch on a windowsill, and prescribed some Diazepam, after which I go to sleep for a while…

I wake up at around 11 am and, seeing the time, think that my operation will no doubt be taking place soon, as I have been in the ward since 7.30 am. I am starting to feel both hungry and thirsty – before a general anaesthetic you are not allowed to eat, so my last food was the evening before, and my last drink was a few sips of water before leaving the flat this morning. I ask a nurse if it would be OK to have a drink of water, and she says no; I may be taken in for my surgery at any time, and you must have nothing in your stomach because of the risk of vomiting.

I get out of bed and start to prowl around the ward, trying to take my mind off my growing thirst. I briefly consider going into the bathroom and drinking water out of the tap, but the nurse has scared me – I don’t want to risk vomiting whilst unconscious. I try to read on my Kindle, but it’s hard to concentrate, knowing what’s about to happen to me, and my thirst is growing by the minute, making itself more and more felt. The Diazepam has taken the edge off my anxiety, but it can’t assuage my thirst.

The minutes and then hours continue to drag by - 1pm comes and goes, then 2pm and eventually all I can do is lie on the bed, in the overheated hospital ward, and think about water: cascades of water, fountains of water, long cool glasses of water clinking with ice cubes. There comes a point during these long hours of waiting when I would willingly have swapped one of my kidneys for an ice cold can of Diet Coke.

I will discover later that the very long delay before my operation was caused by the operation prior to mine – a full mastectomy – encountering complications and taking twice as long as anticipated.

After more than 7 hours with no food or water, by now quite distressed and disorientated, I am simply lying on the trolley gibbering to myself; then, at ten to three in the afternoon, someone finally arrives to take me for my general anaesthetic. He wheels me into a room and leaves me, and shortly afterwards a man in surgical scrubs walks in and introduces himself as Dr. Ivanesevic (not his real name – but it was definitely consonant-heavy, with that Wimbledon-winning Croatian tennis-player vibe to it); he will be the anaesthetist for my operation.

‘You met my colleague earlier’ he says.

You bet I did, I think, and he must have finished his shift hours ago – he’s probably played a game of squash, done the shopping and walked the dog since then.

‘How are you?’ he continues.

‘I am very, very thirsty’ I say. ‘I have had no water for 8 hours. No one will give me any water. I am DYING OF THIRST.’

‘Never mind’ says the doctor, cheerfully, ‘I’ll just give you a litre of fluid intravenously before the operation. Now, this may hurt a little bit, as you seem to have rather small veins…’

With this he drives a needle into my wrist and I scream; after a few seconds I stop screaming, but the pain continues. Dr Ivanesevic looks down doubtfully at my needle-impaled wrist:

‘Hmmm… you really do have remarkably small veins, and you seem to be rather dehydrated’.

This is the only moment in my entire life when I have regretted never taking up kick-boxing; if only I’d had the foresight to acquire such skills, I could have floored Dr Ivanesevic with a swift left hook right there and then from my recumbent position on the hospital trolley.

Leaving the first needle painfully in place, Dr Ivanesevic lifts up my arm and peers at the inside of my elbow.

‘This ought to work’ he says cheerfully ‘although you do have unusually small…’

At this point, mercifully, a veil of darkness descends: I don’t remember how many times it finally took him to get a cannula suitably positioned in my pathetically inadequate veins, or the re-hydrating, or the anaesthetic. All gone, hopefully never to return.

(to be continued...)

The luck of the draw

Day 88 

General status update

Jaw: still twinging sporadically – or should it be twingeing, I can’t quite decide – but seemingly quiescent

Nose: almost back to normal

Hair: its disheveledness is reaching positively Boris Johnsonian levels – it will start quoting Pliny the Elder soon.

Nausea demon: He’s not feeling too well – he seems to have eaten something which disagreed with him. As Oscar Wilde said about the death of Little Nell, you’d have to have a heart of stone not to laugh. I’m sure he’ll be perfectly fine and able to resume his duties by the time FEC5 happens a week from now.

Chemo Muse: Keeps making disparaging remarks about the Anti-Tooth Fairy and her frou-frou outfits, which is a bit rich coming from a woman whose hair is made of snakes.

Anti-Tooth Fairy: she’s been playing poker all day with the Despair Demon – they seem very tight.

Chemo Brian: a little bit confused, what with all the new people milling around recently – he called me over to the sofa a little while ago and whispered into my ear ‘Who the HELL is that b*tch in the tutu?’

.

Anxiety level (1-10): So, I started coughing on the phone to my sister today, and she said ‘that sounds promising’ and I said ‘No, no, it’s just because I’m lying down on the sofa and trying to speak at the same time’, but then it occurred to me how hideous it would be if I went down with a viral respiratory infection now AS WELL AS the bacterial tooth infection, because then it would be like the Nazi-Soviet pact in 1940 when the Forces of Evil JOINED UP, and I’d really rather not have Hitler AND Stalin rampaging around my immune system together – I mean, who would?

Fatigue/weakness: mental, as much as anything – there’s just too much to think about: the chemo, the tooth infection, the upcoming root canal work, trying to remember what happened AFTER the Nazi-Soviet pact and how it ended up with the Siege of Leningrad.

State of mind: busily replaying all the major battles of WWII in my head. Expecting Rommel and the Afrika Korps to appear on the horizon at any moment.

News from North Yorkshire: poor old Hank took his humongous balls off to the boarding kennels today, as BigSisFo and the MC are off to Marrakech for a long weekend at one of those amazing riads with courtyards and fountains and a rooftop view of the Atlas Mountains. The MC is apparently being dragged there kicking and screaming, as there are no salmon rivers, low-flying pheasant or vineyards producing Premier Cru wines in downtown Marrakesh.; he doesn’t really understand what Marrakesh is FOR.

I had the most extraordinary conversation on Twitter yesterday, with a woman who’s also had breast cancer, and finished treatment in 2011, and the extraordinary thing was that she had two sorts of chemotherapy treatment, not only FEC, but also its much, much nastier twin Taxotere –

this is one of the taxane type drugs that were originally developed from the yew tree; now a man-made drug, it was first made from yew tree needles, which are, of course, very, very poisonous. Taxotere has a quite prodigious range of side effects, many of which are currently being suffered by some of my cyber chemo-buddies, and include agonising joint pain, extensive itchy skin rashes, finger and toe nails going black, and the skin on the fingers and toes burning and blistering. One of my friends reports that all the skin on her fingertips has essentially fallen off, so for the moment she is fingerprint-less, and in a position to commit the perfect murder: she didn’t say who she had in mind, but I wouldn’t be at all surprised to hear it was her oncologist…

-  and suffered virtually no side effects: no nausea, no hair loss, no toxic stomach, NOTHING. She just ate up the poison and thrived:

‘I did get a skin rash on Taxotere. But didn't bother with anti-sickness or steroids. I was as fit as a butcher’s dog. With cancer.’

I had heard that there were a few people who undergo chemotherapy with little in the way of side effects, but in my mind they had the status of urban legend, given the severity of the side effects I have been experiencing, as have all the other people I know who are undergoing chemo; it was quite startling actually to come across one. As mentioned in an earlier post, I’m taking part in a doctor’s PhD research study, which is trying to find a way of identifying those patients who are likely to suffer most from chemo side effects by looking for metabolic markers in the blood.  

It seems that how you will respond to chemo is entirely individual and idiosyncratic, according to your genetic makeup, and at this stage of medical knowledge it is impossible to predict which patients will suffer badly, and which will get off lightly – expect that if you have a known tendency to nausea, and suffer from travel sickness, or experienced bad morning sickness in pregnancy, then you can be pretty sure that you will be as sick as a dog on FEC, which is a particularly nausea-inducing combination of chemotherapy drugs.

I mention these issues to highlight to anyone reading this blog that not only is there a huge range of variation both in types of breast cancer, and in types of tumour, but also in individual responses to the various forms of treatment: my experience of the FEC chemo regimen has been horrible, but yours, should you ever experience it, might be quite different. I have suffered from extreme nausea, as do many women being treated with FEC, but there is a significant minority who experience only mild nausea, or do not experience it at all.

I discussed this with the Matron for Chemotherapy when we met last week, as I always feel that I am somehow ‘failing’ chemo by being so floored by the side effects. She reassured me that it was simply the luck of the genetic draw, and mentioned that she currently had two male patients of a similar age and with a similar disease who were currently undergoing an identical chemotherapy regimen: one of them is going through hell; the other is barely affected by it.

It’s all in the luck of the draw…

We shall fight them in the root canals...

Day 87 

General status update

Nose: still unsightly, but improving

Hair: unsightly, not improving, but still attached to head, more or less, so I can’t complain.

Jaw: the pain is now abating, due to the medicated temporary filling, and the antibiotics. I had misunderstood: the dentist says the root canal treatment – killing the nerve – can’t be done until the pain and infection have completely died down, and the antibiotics are finished, i.e. next Tuesday. Until then it just has to be left to settle down... Pity next week is also chemo week, eh?

Nausea demon: Went to an interview in Knightsbridge for a job providing pregnancy nausea services to the wife of a Russian oligarch expecting twins; apparently the job comes with his own flat and a convertible VW. Fancy.

Chemo Muse: She tells me that now the pain of the toothache is abating, I have until tomorrow to get my act together again – we need to get back on track.

Anti-Tooth Fairy: she’s in situ until next Tuesday, for when the root canal treatment is now scheduled. That’s 2 days before FEC5. Lovely. She’s sharing a room with the Despair Demon – they work together a lot, apparently.

Chemo Brian: Badgering me to get tickets for the Boss in Hyde Park in the summer – told him we went last summer, it poured with rain, we were knee-deep in malodorous woodchips, and then they switched off the sound after Paul McCartney joined in the encore – never again. Have never been quite sure whether switching off the sound after Macca joined in was a political act.

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Fatigue/weakness: yes, and to spare – would you like some?

Sleep, lack of: good old Lorazepam sorted that one out last night – I used to be a clean-living girl, very wary about taking this kind of stuff, now I drug myself into a stupor at the drop of a hat. Needs must when the Devil drives…

Anxiety level (1-10): lalalalalalala I CAN’T HEAR YOU

State of mind: I think we’re back to rabid Arctic Wolf again, pretty much. Not to be approached by members of the public – may be armed.

So the toothache crisis is, temporarily, over.

Allegedly.

I went to the dentist today and saw the dentist’s dad, because my dentist has gone down with what sounds worryingly like the Norovirus.

Oh God, let’s not even do that thought experiment, shall we?

My dentist’s dad is also a dentist; in fact he is the Überdentist at the family practice, and a Big Man in Implants, by all accounts. He practices dentistry as a titular patriarch, surrounded by his Islamic feminist dentist daughters, who all sport cunningly swathed headscarves that manage to look totally chic and glamorous and Grace Kelly and not the slightest bit oppressed thank you, which they’re manifestly not as they all graduated from top London universities and are completely kick-ass dentists.

cunning swathing,of the kind practiced by Islamic feminist dentists of my acquaintance - fabulous look, no?

I did in fact do a deal with my dentist that in exchange for the informal tutorials in evolutionary theory and its applications I gave her during some earlier appointments –

What can I say? IT CAME UP, evolution is very controversial in the circles she hangs in, and I am an evolutionary demographer by trade, or was until recently….

- she would teach me how to do the whole cunning swathing thing with the headscarves so that when the FEC did its evil work and made me go bald, I would be able to don headscarves with some élan; to achieve this I was in definite need of assistance, as untutored the best I can do is either

 a) Hilda Ogden in Coronation St from the 1970s

or

 b) bewildered shepherd in Nativity play (thank you, R – I wish I could deny it but that picture of me in the Primani snood from an earlier post says it all, really).

But then I didn’t go bald, mysteriously – or haven’t yet, anyway…

 (touch wood – let’s not tempt fate here, because I have a deep, dark suspicion that my hair is just holding its breath, and that shortly after FEC5 it will finally exhale and my entire head of hair will just drop out in one go, saying ‘Only joking – you didn’t really think you were going to get away with it, did you?’ I can totally see that happening. If hair could speak. Which mine probably can, after four doses of FEC and counting; it’s just biding its time...)

….so I haven’t yet had to trouble the dentist for lessons in cunning swathing, after all.

I digress. Massively.

So today I saw the Dental Paterfamilias, whose name, lyrically, is Dr Bashar Al-Naher (R: ‘it should be Dr Gnasher, really, shouldn’t it?’) and he explained to me that they can’t do the root canal work on my tooth until the inflammation of the nerve and the infection has died down, and the antibiotics are finished, which will not be for another week. And as the pain has lessened considerably today, he deems that the medicated dressing inside the tooth is doing its work, and so the temporary filling should remain undisturbed for the next week while the antibiotics finish off the job.

Hmmm.

In theory I am completely with this programme – it’s unfortunate that this means I’ll be having root canal work in the same week as chemotherapy treatment, but the tooth has to be sorted asap and waiting until after FEC5 really wouldn’t be a good idea, in terms either of neutrophil counts or sanity preservation.

It’s just that the tooth still keeps twinging – and my rampant paranoia is conjuring up a monumental struggle inside my tooth between the Forces of Evil (nasty Nazi-like bacteria seeking to burst beyond the tooth and swim into my bloodstream, whence to launch all-out war and bring on neutropenic sepsis) and the Forces of Good (plucky little neutrophils, much-depleted by the chemo but battling bravely on in the manner of the British forces shortly before they all had to be evacuated at Dunkirk, AND the antibiotics whose role here is, obviously, that of the Americans who turn up late for the war as usual but are very well-nourished and fighting fit).

It occurs to me that I may be sounding even more demented than usual this evening, but it’s really been a difficult few days…

Time to go to bed, and hope that the neutrophils and the antibiotics will keep on winning, and the twinging will stop, and everything will be JUST FINE until next Tuesday.

Of course it will.

Chemo Interruptus

Day 86  

General status update

Nose: starting to heal, now. Jaw hurts much more, anyway.

Hair: really, at this particularly pain-filled point in time, who frigging cares?

Nausea demon: Very p***ed off about the Anti-Tooth Fairy, whom he regards as unfair competition. She doesn’t belong to the Infernal Union of Chemo Demons, she shouldn’t be here, and she’s taking all the limelight. He HATES her. As do I.

Chemo Muse: ‘Suffering is always interesting’ she observed brightly over breakfast this morning. I told her she could make her own toast.

Anti-Tooth Fairy: Vicious, just vicious. The rest of the cast of characters inside my increasingly deranged head are united in hating her, and deeply resenting her intrusion into our happy little home.

Despair Demon: he came abseiling in through the window again yesterday, yodelling, as I sat contemplating the truly cosmic unfairness of toothache/tooth infection/root canal work in addition to chemo. I know life isn’t fair, but the Furies are really having a laugh now, aren’t they?

Chemo Brian: we’ve been entwined on the sofa today, but unfortunately he can’t do much about the toothache, other than make soothing noises.

Sleep, lack of: up at 4am with the toothache, scarfing down brandy and painkillers.

Anxiety level (1-10): 256

State of mind: pretty much what you might expect after suffering from toothache for several days

Today was pretty much cancelled as my jaw continued to dissolve into a red ball of pain. I went to the hospital and had my bloods done; my neutrophils are low, but sufficiently high for the dentist to be allowed to do stuff to me tomorrow: she wants to kill the nerve, whatever that entails, and that should also stop a lot of the pain. By tomorrow the antibiotics should also be starting to kick in, so I’ve just got to get through tonight…

My dentist’s appointment is at 12.20 pm tomorrow, so that’s 18 more hours of painkillers and alcohol, and a Lorazepam to knock me out at bed-time. Then maybe my life will return to normal – well, normal for chemo, anyway…

What fresh hell is this? Part II

Day 85  

General status update

Nose: eclipsed by mouth

Mouth: see below

Nausea demon: feeling very left out, as I’m being tormented far more effectivelyby others at the moment

Chemo Muse: says this is all terrific material – yeah, right. She doesn’t have to experience it.

Chemo Brian: I’ll be joining him on the sofa, shortly

The Anti-Tooth Fairy: like the Devil, she wears Prada.

Hair: not even on the agenda, right now

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Fatigue/weakness: continuing

Anxiety level (1-10): Stratospheric, what with a new infection to worry about.

State of mind: I am turning into Job – there will be a plague of locusts arriving any day now…

Remember the Tooth Fairy? You were a little kid, one of your teeth fell out, your mother comforted you, and 50p appeared magically under your pillow during the night. I loved the Tooth Fairy, as do all children. What nobody tells you, though, is that the Tooth Fairy has an Evil Twin, who turns up when you’re middle-aged, and does Really Terrible Things to your teeth, which is bad enough, but the real kicker is that you have to pay for it all, at huge expense. She's the Anti-Tooth Fairy, and this time it's personal.

One of the first things you learn when you first start looking into chemo is that chemo and dentistry don’t mix; with the risk of infection, and risks from infection, being so high during chemotherapy treatment, the last thing your oncologist wants is anyone coming near you with sharp instruments, and tooth extraction is completely verboten. Any kind of dental treatment can be carried out only with the permission of your oncologist, and your best bet is to get your teeth very thoroughly checked out, and any necessary work done, well before you start your course of chemotherapy, in order to avoid any unfortunate incidents during the 18 weeks you are in your chemical prison.

And that is exactly what I did. By the time I started chemo my teeth were all in perfectly good nick - apart from the one at the front that I knocked out just before chemo started, and which cannot be replaced until after my chemo has finished, thus giving me the unfortunate appearance of an Appalachian bag lady, but that’s another story – so imminent dentistry was not on my current list of major anxieties. Much as breast cancer wasn’t on my list of chosen diseases about which to be hypochondriacal, come to think of it.

When I started getting pain in my jaw last week, then, I simply assumed it was coming from a new mouth ulcer, mouth ulcers being one of the Afflictions of FEC. It kept on hurting over the weekend, though, and I ended up taking quite a lot of painkillers, and I couldn’t seem to find the mouth ulcer. By this morning it was really hurting rather a lot, and the pain seemed to be increasing by the hour, and it seemed to me that the last tooth on my lower right jaw might possibly have a kind of hole in it. I didn’t poke it with anything pointy to check, but all in all an emergency appointment at the dentist seemed like a good plan.

At 2.30 this afternoon, my lovely dentist, who works in what I can only describe as an Islamic Feminist Dental Practice, conveniently situated on the ground floor of the huge mansion block in which R & I live, informed me that the pain was not, as I had hoped, psychosomatic, but that there was indeed a deep hole in my tooth, and the nerve was probably irreversibly damaged, which didn’t sound good. An x-ray then confirmed that the damage was irreversible and there was also an infection in the tooth, and that was very bad news indeed; my oncologist had not only made a point of saying that she would much prefer it if I could manage not to acquire another infection before my next chemo cycle, she had also insisted on giving me that very expensive injection of Pegfilgastrim 10 days ago in order to prevent such a thing occurring.

The dentist then went on to say that the tooth was now essentially toast, although it could be ‘saved’ via root canal work; the pain was coming both from the damaged nerve and from the infection, and because of the chemo and my immuno-compromised status, she would need to consult with my oncologist urgently about what antibiotics I could be given, and whether the oncologist would permit her to do enough work at least to kill the nerve, pending further treatment later on. In the meantime, she inserted a medicated dressing into the tooth to help with the pain, and topped it with a temporary filling.

Fabulous, just fabulous.

I went home, alerted R to this latest disaster-in-the-making, and tried not to fret too much about the burgeoning infection in my jaw, just at the time in the chemo cycle when the immune system is at its weakest. While I waited for a phone call from the dentist, I thought very warm and grateful thoughts towards my oncologist, who had had the foresight to insist on that immune-boosting injection, without which neutropenic sepsis might well have already set in.

An hour later I receive a slightly exasperated call from the dentist’s receptionist, who I believe is her little sister, to say that they had been unable to get a reply from the oncology secretary, and no-one had yet replied to their urgent message. Could I possibly try calling the hospital as well? I assured her that I knew someone to call, and called the Chemo Matron, who had very kindly given me her mobile number and told me that I should call her immediately if any more problems arose. I had not anticipated actually having to do this, but doctors in the oncology department are not easy to get hold of, so it seemed the best way forward in what was a genuine medical emergency.

Becky got straight on the case and within half an hour had got Dr K to write a prescription for some high dose antibiotics, which I then picked up from the hospital pharmacy. Tomorrow I am to go into the hospital to have my bloods done, to see how the neutrophils are holding up in the face of this new infection, and whether I am deemed fit to have any dental treatment.

Meanwhile, I am treating the pain with some industrial strength pain-killers, and a couple of glasses of a vigorous Argentinian Malbec which R picked up on the way home from work, the better to drown our sorrows in ( I did take the precaution of checking with the hospital pharmacist that a glass of wine was not counter-indicated with these particular antibiotics).

R wondered, tentatively, whether red wine was the ideal thing with which to take one’s painkillers;  I replied as follows: ‘My mother always says that she finds it helpful to wash down her painkillers with a good strong dose of alcohol, and she’s 82 years old and a hell of a lot healthier than I am – I rest my case.’

Cheers…..

Matron knows best

Day 84 

General status update

Nose: unspeakable

Hair: unbrushable

Mouth: untouchable

Nausea demon: resting

Chemo Muse: unstoppable

Chemo Brian: unwakable

.

Fatigue/weakness: I’m feeling a lot better in general, now the worst side effects have died down for this cycle, but weakness is really limiting what I can do. I get tired very, very quickly. This seems to be increasingly steadily each cycle. You just have to rest, no point getting frustrated about it: as R keeps saying, all these side effects show that the chemo is working, something I often forget.

Anxiety level (1-10): much reduced now Matron is on the case

State of mind: it is now March – sometime next month, I will be able to go swimming.

There is something deep in the English psyche that warms to the idea of a Matron, especially those of us in middle age with fond childhood memories of the glorious Hattie Jacques as the Matron in the hospital-based ‘Carry On…’ movies: the hospital Matron is associated with efficiency, good order, beds with ‘hospital corners’, and patients being looked after properly, in a prelapsarian Golden Age before the NHS got taken over by layers of middle management and performance targets.

On Thursday I got to meet a Matron for the first time.

Some readers have been wondering whether any of my howls of anguish about the various debacles during my diagnosis and treatment have been heard by, or evoked any response from, the Charing Cross Hospital, and the answer to both questions is yes. A couple of weeks ago I received an email from the Lead Cancer Nurse at the Imperial College Healthcare Trust, the NHS Trust which includes Charing Cross Hospital and four other major London hospitals: Hammersmith Hospital, Queen Charlotte’s and Chelsea Hospital, St Mary’s Hospital and The Western Eye Hospital.

She wrote that she had come across my blog and felt compelled to contact me, both to apologise for the more distressing experiences I described, and to undertake to address the issues raised by them; further, she asked my permission to use relevant material from the blog to give a very direct patient perspective, on both positive and negative experiences of care, in the Trust’s staff training programme on improving the patient experience.

We met for a cup of coffee and a chat, and I was both cheered and impressed by Sarah’s enthusiasm for finding ways to improve the patient experience. I had been quite surprised that she wanted to use material from the blog directly; she pointed out, however, that the power of a first person narrative can make a much greater impact than anonymised and aggregated feedback.

A couple of days after our meeting, I had my fourth dose of FEC, which went rather badly wrong because of the problem with my PICC line; I was still considerably distressed the next day as I was writing an account of it for the blog, and copied the blog post to Sarah even before I published it.

 I won’t repeat the whole PICC line saga here because it’s all in that blog post, but a key issue was that the nurses at Clinic 8, who flush and maintain my PICC line every week in between doses of chemo, had assured me that as long as you could flush saline solution into the PICC line it was fine even if they could not draw blood, resulting in me turning up for two consecutive doses of chemo with a PICC line that was not working properly, according to the chemo nurses.  On both occasions this resulted in harrowing experiences for me in the chemo ward.

Sarah responded to my email immediately, and called a meeting at the hospital with those in charge of the Chemo Ward and Clinic 8 to address what had gone wrong with my treatment. I was then emailed by the Matron for Chemotherapy, who asked me to come in for a chat, and that is how I came to meet a Matron for the first time last Thursday.

The very good news is that no-one else is going to be sent away from Clinic 8 with a PICC line that is not functioning properly; those nurses who apparently forgot it have been very firmly reminded of the policy that unless blood can be drawn from a PICC line, it is not deemed to be safe to use for infusing chemotherapy drugs, and further investigations must be put in place immediately. The Matron, Becky, undertook to arrange for me to have these investigations next week, so that my PICC line would be sorted before the next dose of FEC, but then something miraculous happened which rendered this unnecessary. She looked at my line, flushed it with saline solution, and immediately the syringe filled up with blood, something it had failed to do on numerous previous occasions.

I was awestruck – this woman is like a Horse Whisperer, only with PICC lines. Five different nurses had failed to get blood out of my PICC line, but as soon as Becky touched it, the PICC line stopped misbehaving, got its act together, and the blood positively gushed forth.

Becky has undertaken to keep an eye on the PICC line as we come up to the next dose of chemo and that now makes me feel safe, and confident that we may be able to get through FEC5 without any mishap, which is a huge psychological boost; my previous two experiences left me shattered, and terrified of going back, but I have been assured that every care will be taken to ensure that my final two chemotherapy treatments will go smoothly.

We also spent quite a lot of time discussing the side effects I have been experiencing, and how best to manage them, and even my growing problem of dread and anticipatory nausea before each dose of chemo: Becky is putting me in touch with an NHS complementary therapist who may be able to help me deal with this. This wasn’t something I expected any assistance with, and full credit to Becky, who has clearly read the blog very closely indeed, and had numerous suggestions to make. It seems that chemo patients are usually invited to visit the Chemo Ward before they start treatment, and given advice on what side effects to expect, and how to deal with them, but unfortunately there was a brief hiatus in this practice when I was starting chemo.

Between them, then, Sarah and Becky have responded very fully, and with a very positive spirit, to the various issues regarding my treatment raised here on the blog; not only that, the blog is being used to raise awareness with staff members more widely about problematic aspects of the patient experience, and to highlight examples of best practice. I am very happy to think that my experiences will contribute to improving patient care at Charing Cross, and across the Imperial College Healthcare Trust more generally.

And I’m deeply, deeply relieved that I now have a Matron in personal charge of my PICC line…

What fresh hell is this?

Day 83 

General status update: today it’s all about my nose…

Nose: see below

  

In a new, painful and truly humiliating development, MY NOSE IS FULL OF COLD SORES.

Ah, FEC, the gift that keeps on giving and giving and giving...

A strange 'blister in the nose' has blossomed overnight into a cascade of cold sores descending from well inside my right nostril down to the edge of my nose. I had absolutely no idea that it was even POSSIBLE to get cold sores in your nose. I must say I don't like developing new side effects at this stage one little bit. I feel I've paid my dues with the frigging side effects, what with being the 2013 FEC All England Extreme Nausea Champion, not to mention the 74 days of suffering before getting relief for my Toxic Swamp Stomach. But no, now we're getting the Free Bonus side effects - lovely.

This is probably my punishment for still having hair and eyebrows, which is manifestly unfair on all the other girls - just to even things out, the Chemo Gods have sent the Fecking FEC Fairy to wave her magic wand over my nose...

I’ve got mouth ulcers, too, and a touch of cystitis, so I’m well on the way to ticking every box in my I-Spy Book of FEC Side Effects – I think you have to have experienced all of them to get your special badge at the end of chemotherapy. Now. I’m just waiting now for the conjunctivitis to strike, and then I'll have the full set..

As if this weren’t enough, we’re now getting to the really exciting part of the chemo cycle again, the ‘nadir’: the point when white blood cell counts are at their lowest after a chemotherapy treatment, the patient is significantly immuno-compromised, and there is a high risk of contracting an infection. As regular readers will remember, this is the point at which I acquired a respiratory virus a month ago, became neutropenic, and was forced to delay my fourth dose of chemo for a week.

My oncologist was concerned that this shouldn’t happen again, so last week after FEC4 I was given an injection of something called Pegfilgrastim, which Wikipedia defines as: 

‘a long-acting colony-stimulating factor produced by recombinant technology and used as an adjunct in patients with bone marrow suppression caused by antineoplastic therapy.’

This is, even now, stimulating my bone marrow to produce more neutrophils to fight infection, and the reason I’m mentioning it again is that I’ve just found out how much it costs the NHS for one injection: £714.24, to be precise. I was astonished at this, but R explained that the cost is so high because the stuff is a freshly cultured biotechnological product (made from E.coli, I seem to remember) rather than just a cheap chemical.

It gives one pause for thought, though, the cost of that injection: that’s a lot of money to throw at strengthening one person’s immune system for a week or two. It’s a demonstration of just how dangerous chemotherapy is, just how vulnerable it makes you to life-threatening infections, that the NHS is prepared to shell out that much money, without blinking, to keep me safe while the chemo drugs have wiped out my immune system.  The costs that it avoids are those of admitting you to hospital for a week or two if you do get an infection, and this is very common: today I was looking at the section of the Breast Cancer Care UK forums for people who started chemotherapy last month, in February, and saw that they have been dropping like flies, with a number  of the group already in hospital with infections. This is a very infectious time of the year.

I’m not someone who needs reminding of the danger of chemo, of course, given that my former husband died at the age of 32 from a lung infection after aggressive chemotherapy for leukaemia, but it just occurred to me that it would be interesting to check out how many chemo-related deaths there are these days.  Googling it, I found that hard data are difficult to come by, but I’ve just down-loaded what looks like a fascinating report, published in 2008, by NCEPOD – the National Confidential Enquiry Into Patient Outcome and Death – into chemo-related mortality.

Ploughing through that will keep me usefully occupied over the next few days, while I try to avoid all sources of infection, and fret anxiously in case one is incubating already. I’ll report back with the highlights in due course….

Speed bursts

Day 82 

General status update

Chemo Muse: Mad crazy burst of demonic energy set in yesterday evening, plus hilarious high spirits, much to the alarm of poor R, who had to cope with my sudden metamorphosis from Sylvia Plath into Kathy Lette, without benefit of any added drugs or alcohol. The FEC drugs are doing some very weird things to me this cycle – and it’s not just me, a Cyber Chemo Buddy is having very similar experiences, which is reassuring.

Sleep, lack of: was still bouncing off the walls and giggling to myself at 2am, R having gone to sleep in high dudgeon after I accused him of  having an unusually large head, and then fell about laughing. Hey, I was only joking! The Chemo made me say it! R, your head is  fabulous, really. And not at all abnormally sized, especially considering you are a philosophy professor.

Nausea demon: He’s starting to read the Demon Job Ads, as his job here only lasts for another six weeks – I wonder who he’ll go and torment next?I think he’s angling for a high-paid celebrity pregnancy gig, given that he keeps looking at the back pages of The Lady. He must have been so p***ed off when he got me instead of the Duchess of Cambridge…

Chemo Brian: this morning’s manic whirl of activity including kicking Chemo Brian off the sofa so I could hoover it – he still hasn’t quite recovered from the shock.

Fatigue/weakness: The manic energy lasted until 3.30pm this afternoon precisely, at which point I was overcome by an overwhelming wave of weakness in Tesco’s; my legs felt as if they were giving way under me, and I had to sit down for 10 minutes, resting my head on my trolley, until I felt strong enough to totter out. Such is the Way of FEC.

Hair: I still have eyebrows and eyelashes; apparently nobody else does. That can’t be the cold cap, can it? It must be genetic poison-resistance. Curious.

Anxiety level (1-10): what anxiety? Today have been bouncing along on a happy wave of weird chemotherapy lightheadedness – so wish FEC would feature more of this, and less of the nausea.

State of mind: perfectly chipper, thanks very much.

Today the general status update is going to be bigger than the blog post, because I have run right out of gas… it was the week from hell, but things are getting better, and the hospital is sorting things out for me, which I was going to write about today, but will have to do tomorrow, because the mad burst of energy has evaporated and been replaced by deep, deep fatigue.

With chemo you just have to do what your body tells you: Chemo Brian is beckoning from the sofa and I must go and lie down right now - I'll be back tomorrow.