Don't bring me down..

Day 81

General status update

Hair: Dishevelled, ratty, shedding, but still largely attached. It’s a miracle. I truly thought it was falling out after FEC3, but it was a false alarm. No one believes I’m having chemo, obvs. Even some of the doctors look at me oddly.

Nausea demon: Still doing his best, but starting to lose his grip for this cycle.

Chemo Muse: She says ‘ENOUGH WHINING! You’re starting to feel a bit better, so just shut up and get on with it! And watch my lips: NO MORE LORAZEPAM.’

Despair Demon: the Chemo Muse evicted him this morning, after giving him enough money for a one way ticket to Milton Keynes – he’s needed there.

Chemo Brian: We’ve had 3 days on the sofa together in a Lorazepam daze, but now it’s time to rejoin the human race.

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Fatigue/weakness: gathering 

Anxiety level (1-10): Anxiety has been put on hold for the time being, due to the complete unbearability of thinking for even one nano-second about the next chemo cycle. WE ARE NOT GOING THERE.

State of mind: Considerably more alert after stopping the Lorazepam, and slightly less crazed and angry, now that the worst days of the cycle are over. Onwards and upwards.

The Chemo Muse is back in charge again now, after the last few days of weeping and wailing and gnashing of teeth as I went through the truly bad days of the chemo cycle. She wants effort, work, progress, and a return to the - very - slowly unfolding narrative of the events that led, inexorably, to My Chemo Hell and the shipwreck of a person who now presents herself to you in this blog on a daily basis. Let us return, then, to the morning of October 4^th, 2012 – the day of my operation...

As instructed, we are at the hospital at 7.30 am, reporting to the confusingly named Riverside Ward (the Charing Cross Hospital is some distance from the River Thames). This is the ward where day operations take place, and the waiting room is packed; soon there are a number of people standing. R sportingly gives up his seat to someone who looks in more need of it, and sits on the floor next to me. We are both terrified, and pretending not to be, and somewhat disconcerted to find that relatives are not admitted to the ward at all; R will not be able to come to my bedside after the operation, but will be telephoned to come and pick me up when I have recovered enough to leave the hospital. We agree that he should go home, and wait to be telephoned, and when my name is called I have to go in alone, leaving him behind.

Inside I am shown to a curtained bay containing a hospital trolley/bed and given a hospital gown, paper knickers and surgical stockings. The nurse tells me I am fifth on the operating list, so there will probably be some considerable time to wait. Reluctantly, I change into the hospital attire, and consider what to do next. The hospital bed/trolley is very narrow, the curtained cubicle is tiny, and there is no chair to sit on, but I am very strongly disinclined towards getting into the bed and awaiting my fate. I have read some of the medical anthropology literature on the role of patient, and know that as soon as I get into that bed I will be weakened, enfeebled, institutionalised, passive, putty in the hands of the medical establishment.

Well, sod that for a game of soldiers. No, there must be another way…

Some time later, when the duty anaesthetist pops his head round the curtain to introduce himself and ask the regulation pre-general anaesthetic questions, his brow furrows and he looks puzzled, as well he might, because there is no patient in the bed.

Then he looks up and sees me some distance above him, perched on the very high window-sill, a position I have only been able to achieve by climbing up the rung-like metal sides of the hospital bed and using it as a base from which to launch me upwards. The window ledge is quite wide, and pleasantly cool, as a tiny bit of air is managing to make its way in round the edges of the sealed window unit.

(‘Oh my God, you must have looked like a demented owl’ said my sister a few days later, horror-stricken by my accounts of repeated bad behaviour and non-compliance in hospital environments since being diagnosed with cancer. ‘Why can’t you just be a bloody patient like everyone else and let them help you get better, you FREAK?’)

‘Ah, hello’ says the anaesthetist ‘I’m Dr X’ (I’m afraid I don’t remember his name, which is a shame, as he turned out to be so very, very kind).

‘Don’t mind me’ I say, morosely, ‘I just don’t want to be a patient yet, and when I get in bed, I’m a patient’.

Dr X could have pointed out that since I am in hospital wearing a hospital gown, surgical stockings and plastic identity bands on my wrists, and am going to undergo surgery within the next couple of hours, it is a bit late to start talking about not wanting to be a patient. Instead, with a great deal of forbearance, and considerable kindness, he humours me.

‘No problem’ he says, ‘I know just how you feel. I had an operation myself recently. Why don’t I just come and sit up there with you for a few minutes, while we do this?’

He repeats my procedure of climbing up the metal side parts of the bed and launching himself thence onto the window sill, and we sit there for a few moments in companionable silence. After a while he begins to ask the questions relevant to the imminent administration of general anaesthetic, all of which have been asked before more than once, but which presumably must be triply and quadruply checked to make absolutely sure that there is no error, that no point of danger is overlooked.

In the middle of all this, the surrealness of my position kicks in again. What am I doing here, dressed like this, answering questions from a doctor in surgical scrubs? I don’t want to be here, I want to be…

‘In Goa. I want to go to Goa.’

‘I’m sorry…?’

I explain the whole ‘escaping to Goa’ plan to Dr. X, telling him how it can’t possibly be right that I have breast cancer because have I not swum 23 miles this summer in the swimming pool of THIS VERY HOSPITAL, and do I not have terrific upper body strength with excellent triceps, which I would display to him were it not for this pesky hospital gown? And he nods and listens, and holds my hand as I start to cry, and for some time afterwards, and tells me how I can go to Goa later on, when I’m better. He gently suggests that a tranquiliser might be a good idea to help with my anxiety, and after he leaves I come down from the window sill, get into the bed, and go to sleep for a while.

(to be continued)

First, let’s kill all the oncologists..

Day 80 

General status update: comprehensively FECed off…

If you were walking along the Thames towpath between Hammersmith Bridge and Barnes Bridge today, around 4pm, you may have noticed a dark-haired woman in a green quilted coat, jeans, and trainers, with a face like thunder and a wild look in her eye, muttering angrily under her breath.

That was me.

Today I discovered, from a discussion with my cyber-Chemo Buddies, that some oncologists do things very differently to the ones at the Charing Cross Hospital. From my own experience I find this quite hard to credit, but it seems there are oncologists out there who take a pro-active approach to helping chemo patients deal with the side effects of the toxic drugs that are being pumped into them.

For the first 3 cycles of FEC I suffered not only from overwhelming nausea, but also from severe and increasing toxicity of the stomach, which I have documented fairly vividly in earlier posts.  I described it as being like a toxic chemical swamp, noxious, scalding and steaming, and full of tiny little chemo nano-rats digging in their sharp claws; my friend Cressida, similarly suffering, said her stomach felt as if something has died in there.

You get the idea.

Regular readers will remember that, purely by chance, when I was admitted to A&E with a fever and possible neutropenia during FEC3 I met Rachel, one of the acute oncology nurses, who said that my stomach problems were probably caused by the steroids they give you to help with the nausea, and that I should ask for a drug called Omeprazole.

At my next oncology clinic appointment I met yet another new oncology registrar, who hadn’t looked at my file and was entirely unfamiliar with my history: he asked me how many rounds of chemo I’d had, and if I’d suffered from any side effects at all, so far.

I wanted to kill him.

Slowly, with my bare hands.

It wasn’t his fault, of course; he’s just part of the system.

I described my stomach problems, asked for and was prescribed the Omeprazole, and I’ve been taking it for the last week since the beginning of FEC4. It helps, quite a lot. My stomach has been very bad for the last few days, but it hasn’t driven me to the point of insanity in the way it did the last time round.

I wish I’d had the Omeprazole before. It would have been a very good thing if I’d had it before, don’t you think?

Today, from a virtual Chemo Buddy, I found out what happens elsewhere: at her hospital, when you begin a course of FEC chemotherapy, you are provided with a ‘goodie bag’ of medications to deal with all the main side effects that are likely to arise: nausea, stomach toxicity, oral thrush, eye infections, mouth ulcers. This goodie bag includes Omeprazole, so my friend was taking it from the very first day of her first cycle of chemo. Then another person chipped in, to say that Omeprazole was standard issue at her hospital, too.

I started taking Omeprazole last Thursday, on day 74 of my chemo experience, having endured severe gastric distress for 3 cycles of chemo, completely unaware that there was anything that could be done about it.

At Charing Cross, the only meds you are given after your first dose of chemotherapy is the basic anti-nausea medications, and two days’ worth of steroids; if you get more nasty side effects, as you will, and need anything else, you have to come back and beg for it;  regular readers of this blog will remember just how difficult it has been for me to get help when I needed it.

And it has taken me 74 days to be given a drug which seems to be absolutely standard issue for stomach problems caused by FEC, and then I only found out about it by chance.

Read this and weep, my friends – and pray that if you ever have to endure a course of chemotherapy, it is not at the hands of the oncologists at the Charing Cross Hospital.

They will cheerfully tell you that FEC is 'well-tolerated', and then leave you to suffer the agonies of the damned without a backward glance...

An unexpected truth

Day 79  

General status update

Stomach: complaining bitterly about the indignities heaped upon it for the last 10 weeks, and demanding to go into a Witness Protection Programme. It’s had enough.

Nausea demon: still doing horrible things to my stomach. He never gives up.

Chemo Muse: She’s met her match in the Despair Demon, and she doesn’t like him taking over her patch one little bit. Am hoping she will mount some kind of counter-attack, because I need help, badly.

Despair Demon: He’s ruling the roost, right now. King of all he surveys – as far as the inside of my head goes, anyway

Chemo Brian: We spent the morning together on the sofa, but even he can’t comfort me right now

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Fatigue/weakness: it’s going to get worse before it gets better, probably starting tomorrow, day 7.

Anxiety level (1-10): On the plus side, I’m not Nick Clegg, and my prognosis is probably better than his, too.

State of mind: Wondering if I could find a vet to put me down. It would be the kindest thing.

It’s day 6 of FEC 4, and I am realising that I have completely underestimated the poisonous power of chemo, as have all those people cheering me on who have not experienced it themselves. At the beginning R said it would be like marathon training – hard work, unpleasant, but for a specific purpose and, most importantly, time-limited. It would be horrible, but it would come to an end, and the finishing line would always be in sight, and the closer you got to the goal, the easier it would be to continue, spurred on by your nearness to success.

I took comfort from that idea, at the beginning, but have now come face to face with an unexpected truth: the experience of chemo is nothing like that at all.

With marathon training, you get fitter, you’re able to run further, demand more of your body, achieve things previously unthought of.  With chemo you become progressively more poisoned, weaker, more and more psychologically crushed and, as the weeks slowly pass, you dread each new dose of chemo more and more viscerally.

When I got to FEC3, half-way, that should have been a big psychological turning point: Half way! Yay! On the downward slope!

But it wasn’t like that at all. There was no sense of achievement; rather, I was filled with horror that having gone through this physical and mental torture 3 times already, I was now going to have to do it ALL OVER AGAIN. Similarly, now I’ve ‘done’ FEC4 (although I’m still in the middle of the side effects),  and there are ‘only’ 2 more doses of chemo to go, there is no sense of relief, just grim despair at what still lies in front of me: it’s as if I’ve already climbed the Eiger, the Matterhorn, Mont Blanc and the Jungfrau, only to find that Everest and K2 are still sitting there waiting for me, their jagged peaks wreathed in clouds of mist and snow.

It gets harder every time, not easier, and that’s an unexpected and very unwelcome truth. You become extraordinarily tired, mentally and physically, by going through the process of chemotherapy treatment. For the first 3 cycles of chemo, the first 9 weeks, I managed to keep going: there were a few very bad days each cycle, but I managed to keep on writing coherent blog-posts, more or less, getting dressed and going out each day, keeping the house going. I stayed mentally alert, and I could see the way forward.

Now, all I long for is sweet oblivion: another 8 weeks of this seems like a life sentence. I’m tired, so tired, and I just want to stop. To ‘cease upon the midnight with no pain’ seems like an extraordinarily attractive option, if only it were available. 

I am weary to my bones, and I am weary in my soul.

I know I’m going through the worst part of the cycle now, and I’ll have more energy again in a few days, and more hope, but right now the whole chemo enterprise seems like climbing up a mountain on my hands and knees: unbearably slow, and unbearably painful, and far more effort than it’s worth.

People are trying to cheer me up, and urge me on and R, as ever, is a tower of strength, but I’m just so weak now, in mind and body. Right now, the chemo has won.

It’s taken the life right out of me.

FEC - 1, Fo - 0 

Losing it. Just losing it.

Day 78

General status update:

Despair Demon: He abseiled in through the window earlier, and has opened up a Giant Black Hole of Despair in the middle of the sitting room floor, into which I am in severe danger of disappearing, never to be seen again.

Hair: the only part of me that seems normal at the moment. Still, miraculously, mostly attached.

Nausea demon: He started the day with an opportunistic bout of early morning retching, as I tried to swallow my anti-emetic drugs, but I managed to keep them down, just. I need to eat, but all food tastes disgusting – even water tastes disgusting. Everything is unspeakably foul. My stomach feels sick, sore and kind of scorched, all at the same time. I am living in the middle of Satan’s digestive system. Maybe I AM Satan’s digestive system. Please make this stop. Why am I being tortured like this?

Chemo Muse: she didn’t stand a chance today. There are the Dog Days of the chemo cycle and I just want to die. Who cares about blogging?  

Chemo Brian: With the help of Lorazepam and Chemo Brian have somehow got through the day on the sofa. I feel so bad I can’t even read. I watched moronic property programmes on the television because the noise and images diverted my mind from my stomach.

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Fatigue/weakness: has hit me earlier this cycle – I am in quite poor shape all round. So much for your body getting used to being poisoned.

Sleep, lack of: I took a Lorazepam last night, which helped me make it through the night, and am counting down the hours until I can take another one and become unconscious again.

Anxiety level (1-10): Have stopped caring about anything pretty much, except wanting not to feel like this.

State of mind: Not sure if I can do this any more. Each cycle it gets worse, and right now, at the worst point in the cycle, the thought of doing it twice more is just unbearable.

You know what? Your body doesn’t get used to being poisoned – at least, mine hasn’t. This is day 5 of FEC4, the worst day of the cycle, and it is every bit as bad as the previous three day 5s.

I FEEL TERRIBLE.

And the idea of there only being two more doses of chemo to go doesn’t comfort me at all. Each time there is more and more dread, and it is getting harder and harder to force myself to go down to the chemo ward to be poisoned, in the knowledge that a few days later I will feel like this; endlessly nauseous, endlessly toxic, completely overwhelmed by extreme physical discomfort.

Whoever thought inflicting this on defenceless, ill human beings was a good idea? Whoever thought it was worth inflicting chemical weapons on people so that they would suffer horribly, for a very small chance that it might help stop their cancer coming back?

Why do doctors push chemo on people when it has such a small success rate? OK, this is not the time to write about this, because at the moment I am hardly rational. However, it would be different if it had a success rate of 30 or, 40 %, even of 25%. But for a 7-8% chance of being helped AT ALL, I am enduring 18 weeks of torture from the effects of the chemotherapy drugs, not to mention all the problems I have experienced at the hospital with the administration of the chemotherapy, and with getting help afterwards with the problems from the side effects.

It has been 78 days so far of pain, nausea, toxicity, extreme fatigue, weakness, infection and being at the mercy of people who sometimes aren’t very interested in helping you. The whole thing has been a complete nightmare. Before I started the chemo, I was in fairly good mental and physical shape – now I’m pretty much a basket case.

On the whole, today, I wish I’d listened to my instincts and legged it to Goa while I still had the chance.

Brave New World

Day 77 

General status update

Hair: still snooded – it’s better that way. And warmer.

Nausea demon: I wish he’d just b***er off back to the infernal regions. I am SO, SO SICK OF FEELING SICK

Chemo Muse: I’m writing this at 3.15 am so, as you can tell, she’s firing on all cylinders.

Chemo Brian: slumbering on the sofa – I wish I was.

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Fatigue/weakness: I’m wired on Dexamethasone – I could take you, easy.

Sleep, lack of: acute, right now. The steroids are keeping me wide, wide awake

Anxiety level (1-10): Worrying about what’s going to happen to me when the steroids wear off, and that’s because I KNOW what’s going to happen to me when the steroids wear off.

State of mind: forewarned is not forearmed – just frightened.

It is the third of October, 2012, the day before the operation on my breast is due to take place. I have already done the usual tests to check that I am fit for a general anaesthetic, something I’ve never experienced before. BigSisFo, who had a general anaesthetic a few months earlier for the removal of a small and entirely non-cancerous lump from her side, has assured me that it is no big deal; she felt perfectly fine afterwards, and was up and about conducting her normal activities the next day. Not too scary, then, and my lumpectomy will be carried out as a day operation; if all is well, I will be able to go home in the evening.

Today, however, I have to go to the hospital for one final pre-operative procedure: the injection of some radioactive dye into my breast for the sentinel node biopsy. This morning they will inject the dye into my breast, and tomorrow, when the surgeon opens me up to remove the tumour, the dye will show which of the lymph nodes under my arm fluid drains to first from the breast – the ‘sentinel node’- which is where the cancer will have gone if it has started to spread. This node will be removed, and analysed in the path lab for any traces of cancer.

An injection of dye doesn’t sound too heavy duty, so I assure R this is a hospital appointment I can handle alone. I go the department of nuclear medicine, am escorted into a treatment room, and told to lie down on a bed surrounded by a lot of very hi-tech equipment. A female doctor, young and jolly, comes in and explains what she is going to do. Then she says ‘OK, so it’s your left breast we’re injecting…’

I go cold, and stare at her, terrified.

‘No, it’s my right breast. MY RIGHT BREAST.’

She smiles, ‘Sorry, they didn’t put it on the request form.’

I’m appalled. How can this be? What if they were to operate on the wrong breast?’

‘Um… are you sure the surgeon has written it down right? It is on the system that it’s my right breast?’

‘Yes, don’t worry, it will all be on the system, just not on this particular piece of paper.’

I am not overly reassured, and my mood drops further when the doctor tells me that she is going to inject the radioactive dye into my right nipple.

WHAT? Nobody said anything about injecting me in the nipple.

‘I’m afraid this may hurt rather, but we can’t give you any anaesthetic, because you have to feel it so we know that it’s working.’

I’m not convinced by the logic here at all, but I’m lying on the bed rigid with terror, about to be injected, and in no position to argue. The nurse holds my hand, the doctor gives the injection, and it is agony. I was completely unprepared for this.

What happens next I simply don’t remember: most events at the hospital from the diagnosis onwards are still very clearly etched in my brain, but this one day is blurred, because I am in shock from the pain, and the impact of the first physically intrusive procedure. I do not realise it at the time, but this injection is a rite of passage: it marks my transition from being physically whole, and healthy, and autonomous, to being a cancer patient, dependent upon the doctors to save me, my body invaded, injected, sliced up, and sewn back together again.

In time, I will become accustomed to handing my body over to strangers while they do unpleasant things to me - the constant prickings of injections, drawings of blood, the PICC line inserted into my body as a semi-permanent installation to deliver the chemotherapy drugs up through my arm into a bigger vein, close to my heart - all of this will become routine.

But now, this day, is my first real entry into a new world of pain, and I am quite unprepared for its impact. When they let me go, I walk down the corridor, down the escalator, and out into the hospital grounds, shaking, trying not to cry. I need time to collect myself, and sit down on one of the benches outside, in front of  the railings which surround the hospital grounds, on the other side of which is the never-ceasing flow of traffic down the Fulham Palace Road.

I sit and cry for a while, with the realisation dawning on me that I can’t be in denial about the cancer anymore; this morning has introduced me to the harsh physical reality of what I am about to face - I am now alone in an entirely new, painful and very frightening world.

MamaFo throws a spanner in the works

Day 76 Intermezzo: Another romantic interlude

General status update

Hair: slumbering, safely wrapped in snood

Nausea demon: hanging on in there – I find it quite astonishing that I still feel nauseous, despite being on four different anti-emetic drugs. I seem to have inherited the stomach of a feeble Victorian invalid, perhaps Elizabeth Barrett Browning. She was very fond of sofas too, come to think of it.

Chemo Muse: Fuelled by the steroids, she positively GLOWS. Keeping me at it.

Chemo Brian: tucked up on the sofa under a warm throw, with Chemo Rat Brian’s little head poking out out next to him. They are now inseparable.

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Fatigue/weakness: that won’t kick in until about day 5. They made me go back to the hospital yesterday for an injection of something called Pegfilgrastim, which will encourage my bone marrow to produce more white blood cells, in the hope of avoiding another infection, and neutropenia, this chemo cycle. Worryingly, according to the notes that accompany the drug ‘Pegfilgrastim is a protein produced by biotechnology in bacteria called E.coli’ E.coli?? I guess I just have to trust my oncologist. Oh – have just noticed that included amongst the very common side effects of this drug, apart from joint pain (which I don’t have, so far) is …nausea. No wonder the Nausea Demon has been smirking to himself, he’s got some added back-up.

Anxiety level (1-10): It’s only day 3 of this chemo cycle, and I’m still on the steroids. The truly bad times don’t start until day 5.

State of mind: A bit down-hearted after another rather extreme experience at the hospital on Thursday. Still, taking comfort in the fact that there are only 2 more FECs to go.

Previously on Chemo Nights: After ‘meeting’ in cyberspace during a discussion about procrastination  with a mutual friend on Twitter, R and I have developed a close on-line relationship during the autumn of 2010, bonding over bonding over our mutual love of the London Review of Books , amongst other things. Our brains just match each other, and we quite like each other's photos, too. There are many obstacles that stand between us in terms of our personal circumstances, not least that I live in an old camel barn, converted into a library, on the north Aegean coast of Turkey, and he lives 2,000 miles away in West London. R is very keen for us to meet in person, and his approach to the obstacles in our way is much that of an Olympic 400m hurdler on the starting blocks, impatient for the gun to be fired so he can go for gold. I am considerably more cautious, having read much about  the low success rate of converting on-line relationships into real life ones. Eventually, however, I am persuaded that we should at least give it a try, and book a plane ticket back to London during the last week of March, 2011.

Now read on…..

My mother, MamaFo, who is 81 and lives in a fortified redoubt in the foothills of the Tramuntana  Mountains in Mallorca, where over the last 30 years she has cultivated a spectacularly beautiful Mediterranean garden (including a small but fruitful wacky baccy plantation  - for her personal use only, obvs - which is planted and harvested strictly according to the waxing and waning of the moon), gave up travelling a couple of years ago, on the following grounds:

1) She objects very strongly to the neo-fascist security staff at Heathrow airport who, last time she flew, managed to give her serious grief even though she was in a wheel-chair (Old lady in wheelchair! Obviously smuggling explosives! Needs to be body–searched!);

2) She objects very strongly to not being allowed to smoke between the time of entering the terminal at Palma airport and exiting the terminal at Heathrow, a gap of at least 5 hours between cigarettes, which is liable to lead to spontaneous combustion; and

3) She has done enough travelling for one life time – now is the time for her to sit on her terrace with a cup of coffee, a glass of Soberano, and a packet of Benson and Hedges, gazing at the ever-changing play of light on the Tramuntana mountains, watching the eagles swooping and gliding on the air-currents,  and occasionally barking instructions to my stepfather (somewhat younger than her – this is the way of my people) as he labours in the gardens on the terraced hillside below.

Nowadays, then, if we wish to see MamaFo, we have to get on a plane and go to Mallorca. This being the current state of affairs, I assumed, inasmuch as I thought about it at all, that my mother, whose 80^th  birthday was coming up on April 4^th, 2011, wouldn’t be holding a party; she had celebrated her 70^th in the UK with some style, but repeating such an event was now out of the question.

Remember the aged uncle in the Forsyte Saga (I think it might have been James) whose mantra was ‘nobody ever tells me anything?’ That’s my role in the Fo family. It was sometime in February, and plans were already well underway for Mama Fo’s 80^th Birthday Weekend Extravaganza in Mallorca, before anyone bothered to inform me that my presence was going to be required in the Tramuntana Mountains in the same week that I was planning to meet R for the first time in London.

I simply couldn’t believe it.

I had booked to come to London for 3 weeks, arriving on Sunday 27^th of March, and MamaFo’s birthday weekend was beginning the following Friday. A plane ticket had been booked for me, and I was to present myself at Gatwick Airport on the Friday morning to travel with various family members to Mallorca for 4 days, returning the following Monday. There was to be a gala lunch on the Saturday at the Tramuntana Mountains Golf Club, whose greens are grazed by a small herd of goats, followed by a smaller lunch, for family only, at a restaurant down by the sea on the Sunday (MamaFo prefers to lunch rather than dine, these days). We were all to be accommodated in a historic finca, now converted to boutique agroturismo, just down the hill from Casa Fo.

It was to be a grand gathering of the clan, a celebration of the extended family, and of 80 years of MamaFo adding to the world’s rich tapestry in her own inimitable way.  Everyone was thrilled and excited about it.

Everyone except for me, that is..

I was already a complete basket case about going to meet R, and the only person who knew what I was planning was my closest friend in Ayvalik. No one in my family had any idea that my first trip to London in several years was about anything other than catching up with family and friends and stocking up on marmalade.  Now I was going to have to fly 2,000 miles to London, stay for 4 days, and then fly 1,000 miles back to Mallorca for the party.  The entire family was in a frenzy of excitement about this event, and I just couldn’t believe my bad luck, especially as I was expected to write a speech for the occasion, being the family orator.

This is a Message from God, I thought darkly, telling me that meeting R is going to be  a complete fiasco.  As the days counted down towards March 27^th, and my head became more and more frazzled trying to think about two things at once, and people started commenting on my curious lack of enthusiasm for the coming festivities chez MamaFo, my mood began to darken about my secret assignation with R … should I just call the whole thing off?

Fo Agonistes

Day 75  Does it really have to be like this?

General status update

Hair: deeply traumatised after yesterday’s extensive freezing; still defrosting inside snood

Nausea demon: He’s back, and working very hard: he’s just one lonely nausea demon fighting against the powers of Big Pharma in the form of the anti-emetic drugs Fosapprepitant, Ondansetron, Domperidone and Cyclizine, not to mention the steroid Dexamethasone, but he’s still managing to make himself felt. He’s a tough little bugger, I‘ll give him that.

Chemo Muse: She says ‘OK, we’ve got the Dexys, your brain is wired, now it’s time to get serious. WRITE’

Chemo Brian: Keeps saying he wishes he could have been there with me on the chemo ward yesterday, and that I am to snuggle up with him on the sofa just as soon as I’ve finished writing this blog post and am allowed to stand down by the Chemo Muse.

Fatigue/weakness: What are you talking about – I’m on STEROIDS!!! YAY!!!

Sleep, lack of: Steroids delayed it a bit last night, but got there in the end.

Anxiety level (1-10): You can’t be anxious on steroids, because you have The Power

State of mind: Mistress of the Universe, albeit a rather nauseous one.

As we walk down the Fulham Palace Road on Thursday afternoon towards the Charing Cross Hospital and FEC4 I am fuzzily optimistic, the fuzziness being an artefact of the Lorazepam tablets I have taken last night and this morning, in order to deal with what is now extreme anticipatory dread before the administration of chemo.

I know I have been very unlucky in that in each of the first 3 cycles of FEC, I have come against some fairly major problems: in cycles 1 and 2, I experienced  severe nausea in the days after receiving the chemo, with insufficient drugs to cope with it, had considerable difficulty getting any help, and endured a great deal of physical and mental distress. For FEC3, The problem lay in its administration, due to the fact that the nurses were unable to draw any blood from my PICC line, and the day ended up being an exhausting 7 hour saga, involving emergency x-rays, during which my head had to be frozen, defrosted, and then frozen again. These experiences have all been documented in detail earlier in the blog.

For FEC4, I am reasonably confident that there will be no snafus. When I went to have my blood test done on Monday, the nurse in clinic 8 was unable to draw blood from my PICC line, but told me that it was not important: she had been able to flush the PICC line by pumping saline solution into it, which meant that it was clear. Why blood wasn’t coming out was mysterious, but it wasn’t really important; she took the blood from the back of my hand instead. I asked her if this lack of blood might cause a problem with the chemo on Thursday, but she said not. The previous week another nurse in clinic 8, who said she had previously worked on the Chemo Ward for a number of years, had told me much the same, and said that all the business with emergency x-rays for FEC3 had been unnecessary: if the saline solution goes in, then the line is working ok to put the chemo in, whether blood is coming out or not.

I am not unduly worried then, as we go into the Chemo Ward, about PICC line problems; it flushes OK with saline, so there shouldn't be a problem. Today my chemo nurse is Georgiana, a Romanian who manages to combine being highly professional and ferociously organised with warmth and kindness. I am immediately glad to be in her hands. They have got the cold cap machine fired up before I come in, so as soon I am settled in the Big Pink Chair of Chemo, the cold cap goes on and it is AGONY.

Today’s chosen poem for reciting to distract me from the torture of the cold cap is Robert Frost’s ‘Stopping by Woods on a Snowy Evening’, but the pain is so acute I can’t get my brain into gear:

‘Nooooooooooooo, stop stop stop STOP THIS….come ON, Caroline, focus FOCUS, it will help with the pain….

Whose woods these are I think I know.   

His house is in the village though;   

He will not see me stopping here   

To watch his woods fill up with snow.   

I can’t bear this, it hurts so much, it’s worse this time, I CAN’T BEAR IT.

R can see I am suffering, and offers to get me some coffee. I nod, and he goes off to fetch it. Back to the poem, ignore the pain.

My little horse must think it queer   

To stop without a farmhouse near   

Between the woods and frozen lake   

The darkest evening of the year.   

   I realise I should have taken some painkillers in advance of the cold cap, but forgot because I was focused on taking the Lorazepam. Lorazepam is excellent for anxiety, but it doesn’t seem much cop at dealing with pain.

He gives his harness bells a shake   

To ask if there is some mistake.   

The only other sound’s the sweep   

Of easy wind and downy flake. 

   God, this is horrible, it is beyond horrible, but I must keep going. Freezing stops the bastard FEC from taking my hair. I’ve done this 3 times  already, I can do it again.

The woods are lovely, dark and deep.   

But I have promises to keep,   

And miles to go before I sleep,   

And miles to go before I sleep

   Those woods are looking pretty damned attractive right now, to be honest. Just go in there, curl up, lie down in the snow, and stop all this torture. No, MUST keep going.

R brings the coffee, but it doesn’t help much. I just have to grit my teeth, keep reciting the poem over and over, just keep on bearing it. It will get better soon. Eventually the pain abates to a bearable level, but it’s by far the worst cold cap experience so far. I sit there, shaking, as Georgiana comes to flush my PICC line prior to infusing the anti-emetics, the steroids, and then the chemotherapy drugs.

The saline solution flushes in just fine, and I hold my breath as she tries to get some blood out. No go. I tell Georgiana that the nurses at Clinic 8 said it wasn’t a problem, and about what happened last time with the emergency x-ray etc.

She says ‘It’s nearly 3pm; we don’t have time for emergency X rays. I need to get some blood out of the line, or we can’t do the chemo today. It is too dangerous. But I can put in the anti-emetics and the steroids now, as they’re not dangerous, and then we’ll try with the blood again after that.’

And she does, and it doesn’t work, and so the whole saga happens all over again: repeated flushings with saline, repeated attempts to get blood, all to no avail. I am instructed to stand up and do callisthenics, to get the blood flowing, but shoulder rolls and stretches don’t work: still no blood.Other nurses are consulted, and I am injected with an anti-clotting agent, to see if that will shift it: no joy.

For whatever reason, a clot or a kink in the line, my PICC line just will not give blood. The nurses decide it might be better if I’m on a bed, so I’m put on a bed, the foot of which is then winched up into the air, so that I am lying at quite a steep angle: feet up, head down. It must be quite a sight. It makes no difference.

By this time I am getting very, very cold. I’ve had the cold cap on for a long time, and my whole body is shivering. I cover myself with a big woolly cardigan, but it doesn’t make much difference: I am so, so cold, and it’s all I can think about now.

Feeling woozy and confused, I ask Georgiana again why they can’t give me the chemo if the line is flushing OK with saline – the nurses in clinic 8, the haematology clinic, said it would be OK.

Georgiana is indignant. ‘It’s not OK. These drugs are highly toxic and very dangerous – if they get into your tissues, it will cause necrosis. You could die, or at the very least need extensive surgery to repair the damage. I don’t want you to die, and I don’t want to lose my job. What the nurses in clinic 8 are doing is wrong; it is their responsibility, when you come for your pre-chemo blood test, to ensure that blood can be drawn from your PICC line. If it can’t, then it should be investigated then and there, when there is time to do it – not when you’re here at the chemo ward, when there is time pressure to get the chemo finished before the ward closes for the day.’

R and I are both immediately convinced, but still very confused about all the conflicting information we have been receiving.

Eventually Georgiana says: ‘There are 2 choices. It’s too late to get investigations done on your PICC line today, so you could go home, and come back tomorrow for a ‘lineogram’ to see what the problem is, and then have the chemo. Or, if you still want to have the chemo today, I can put the chemo directly into a vein on your wrist.’

This scares me; I’ve heard so many stories of people who have the chemo drugs directly into their wrist getting their veins damaged by the extreme toxicity. On the other hand, I am very tired, extremely cold, getting more and more distressed and utterly horrified by the thought of having to come back again tomorrow and start this all over again, not to mention the fact that I’ve already been pumped full of anti-emetic drugs and steroids.

‘I don’t want to do this again tomorrow.’ I say, wearily ‘Let’s try the vein. But I’m afraid my veins are very small – that’s why they gave me the PICC line.’ Georgiana picks up my hand and examines my wrist, where there are no veins visible; nor are there any on the back of my hand. I’m just not a very veiny person.

‘Hmmm, I see what you mean. OK, we’ll immerse your arm in hot water for a while – this helps to expand the veins.’

A bucket of hot water is brought, and I lie on the bed for 20 minutes with my hand in the bucket, wondering, for the thousandth time, how my life has come to this. I’m still extremely cold; the hand is the only part of me that feels warm. The hot water does the trick, and a vein is now discernible in my wrist. Georgiana pushes in a needle, the cannula is fitted, and at last I am ready to be infused with the chemo drugs.

And so FEC4 is finally administered, but I am so, so cold. R covers me with my coat, and I have the big woolly cardigan, but I’m constantly shivering. Because of all the delay, I have been wearing the Cold Cap for a very long time, and I am chilled to the bone. I can’t think, or read, or speak: all I can do is close my eyes, huddle further underneath my coverings and wait for it to be over.

Eventually, all the bags of chemotherapy drugs are in my bloodstream, and we can stop. It is 6pm. Georgiana lifts the pink Cold Cap from my head – my hair is frozen solid in a ball of ice. Soon it is wrapped up in the snood, and I am wrapped up in my coat; we thank Georgiana, who says she is going to write a report for her manager about the problem with clinic 8.

R gently guides me to the lifts; I’m not really capable of speech. All I want is to get home, curl up on the sofa and be warm again. Right now, I feel as if I will never be warm again.

And I never got to think about the sun, and the swans.

Having chemotherapy is frightening, uncomfortable and stressful even if it goes smoothly, but both FEC3 and FEC4 have left me, by the end of the day, mentally and physically traumatised. FEC1 and FEC2 also left me very distressed, in the following days, through not being able to get help to deal with the side effects.

Every single one of the four doses of chemotherapy I have had so far has left me in a state of severe distress, not just because of the chemo itself, but because of communications problems within the hospital, organisational snafus, emergency phone lines being out of order – the list goes on and on. As soon as anything out of the ordinary happens, the patient is left blundering about in a maze of overlapping jurisdictions and people giving frighteningly conflicting information, or saying ‘This is not my problem – someone else should be dealing with it’

This is torture.

Chemo is torture, but it shouldn’t be this bad.

Does it really have to be like this? Over and over again?

They told me there would be swans

Day 74 

General status update:

Overall: Yet again, totally fecked…

Some hopeful correspondence between me and one of my virtual chemo buddies this morning (nb my online name is Cybele, after the very kick ass Anatolian fertility goddess immortalised- not that she needed it, obvs - by Catullus in his Ode LXIII, which is like a ‘Don’t go into the woods, young man!’ horror movie, only in Latin; the hero, Attis, doesn’t come out in one piece, I’m afraid, and the bits he loses are rather vital):

Cressida

Cybele - good luck with the FEC 4 today. I am trying to practice a bit of mindfulness, and also spent the sunny afternoon on Tuesday seeking out images to hold onto. I have more countryside than you, and I found 6 deer in Ashridge forest who couldn't be bothered to run away from me. I think they could see that I was in no state to chase them. I am taking them with me next week into the chemo unit. Keep your mind on the swans. Xxx

Cybele

I've got my chemo at 2.30 - took one Lorazepam last night, and going to take another one about 1pm - hopefully, that will get me through it better than last time, when I wept all the way down the Fulham Palace Road on the way to the hospital. GOTTA GET A GRIP.

Cressida

And, yes, I am aware that by focusing on the swans you will not be mindful of the chemo experience. One thing at a time.

Cybele

Hah - not sure the chemo experience is something we need to be mindful of. Swans definitely preferable. In fact, they should provide them in the chemo ward. With a nice pond, obvs.

Cressida

Take enough Lorazepam and you should have swans and a lake. You might even have a ballet.

Suffice to say, there were no swans, and it was another extremely unfortunate visit to the chemo ward which, yet again, did not go according to plan. The curse of Fo struck again, but I got the chemo eventually, after a long and very stressful day, which I’ll write about tomorrow. 

A bloke in the corner called Kierkegaard, biting the heads off whippets...

Day 73  

General status update

Hair: bracing itself for FEC4, but looking forward to the snood

Nausea demon, Chemo Muse, Chemo Brian: back from their trip - to Whitstable, as it turns out - where the weather was lovely, they stayed in a designer B&B, and a wonderful time was had by all. Excellent. So happy they’re all BONDING.

Anxiety level (1-10): see dread

Dread: see below

State of mind: see dread

“Like one, that on a lonesome road Doth walk in fear and dread, And having once turned round walks on, And turns no more his head; Because he knows, a frightful fiend Doth close behind him tread”

Samuel Taylor Coleridge, The Rime of the Ancient Mariner, 

  

The 19^th Century Danish existential philosopher and theologian Søren Kierkegaard, or ‘the Danish Doctor of Dread’ as the New York Times recently described him, distinguishes between fear and dread: he argues that fear is the emotional response humans experience in response to some known potentially harmful or dangerous object or situation, as when facing a wild animal, or in a potentially embarrassing situation, such as public speaking.

Dread, on the other hand, he defines as unfocused fear, in relation to freedom, and the anxiety of choice: using the example of a man standing on the edge of a cliff, knowing that he could throw himself off it, and decide his own destiny. This realisation, that one has the possibility and freedom to do something, even the most terrifying of possibilities, is dread: the ‘dizziness of freedom’.

Kierkegaard so didn’t know what he was talking about.

Try a few cycles of chemo, Søren, and then you’ll be able to distinguish very clearly indeed between fear and dread. Fear can be of the known, but the greatest fear is of the unknown, because the very fact of something - say your first dose of chemo – being an unknown quantity means that your imagination runs wild. When what you fear is unknown, your fear knows no bounds, and the night before my first dose of chemo I was very scared indeed.

Tonight is the night before my fourth dose of chemo, and I’m no longer feeling fear, as I know now exactly what will happen to me, and just how bad it will make me feel, particularly between days 5 – 10 after I receive the chemotherapy. I don’t feel fear anymore – what I feel now is dread, and it’s getting to be much worse than the fear ever was. Every time I think about the chemo ward and what will happen to me there I shudder, and my stomach turns over, as well it might, since it is my stomach that bears the brunt of the side effects both of the chemo, and of the drugs they give to help with those side effects.

There’s another name for this: they call it ‘anticipatory nausea’:

“Many patients who experience nausea and vomiting as a result of chemotherapy

develop a preceding wave of symptoms, known as anticipatory nausea and

vomiting (ANV), before starting their subsequent cycle.

Nearly one in three patients experience anticipatory nausea, while anticipatory

vomiting occurs in about one in 10, according to the National Cancer Institute

(NCI). Unlike post-chemotherapy nausea and vomiting, however, which can begin

hours to days after treatment in reaction to drug effects on the gastrointestinal

tract, ANV shows up before treatment. Symptoms are generally experienced

among those whose nausea and vomiting were not controlled by medication or

other measures after prior chemotherapy sessions.

ANV is thought to be a result of classical psychological conditioning. The sights,

sounds and smells of the chemotherapy room, with oncology professionals

milling about, take on new significance once chemotherapy treatments begin.

These previously neutral stimuli then prompt a learned response from patients

once they begin to associate this setting with nausea and vomiting, and this

response becomes a pattern.”

http://curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1985

I first realised I was suffering from this last week, when someone with the very best of intentions sent me a cheery video of a young woman with cancer dancing around and singing ‘What doesn’t kill you makes you stronger’ -  in a chemo ward. It was her way of putting two fingers up to chemo, and to cancer, and it was lovely, but I couldn’t watch it for more than a few seconds, because the images of the chemo ward, the machines, the plastic bags of chemo drugs on the drips, immediately made me feel ill: my stomach churned.

Even thinking about it now makes my stomach churn – and it reminds me of the film A Clockwork Orange, where the aversion therapy given to the brutal, vicious protagonist Alex - watching violent films after being injected with drugs which produce extreme nausea - not only makes Alex feel extremely ill when he thinks about violence, but also when he hears the music of Beethoven, which was played along with the films.

I have now become, like one of Pavlov’s dogs, or Alex, psychologically conditioned to respond to other cues besides the chemo drugs that actually induce nausea; just the sight of a chemo ward on that YouTube video evoked an instant, visceral response. This is a bit of a worry, as I don’t want to start vomiting tomorrow even before they start giving me the treatment. – or to be retching in anticipation all the way down the Fulham Palace Road.

According to the experts, because ANV is a learned response, behavioural interventions are especially useful in managing it, using techniques that focus on helping patients relax more before chemotherapy and enhance feelings of control. According to the US National Cancer Institute, what works best is ‘Progressive muscle relaxation with guided imagery, hypnosis and systematic Desensitization.’

Well, that would be nice, and they probably offer something like that at The Haven but as I’m having chemo tomorrow a quicker fix might be useful. Happily, it seems there is one available:

“While antiemetic drugs work well in controlling CINV, they’re not as effective

against ANV once it has developed. The anti-anxiety drug Lorazepam has shown

promise in preventing ANV, however, by stemming memories of vomiting

associated with chemotherapy. Studies show Lorazepam works best when given

the night before and the morning of chemotherapy.”

http://curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1985

Right then – that’ll be one Lorazepam tonight, and another one in the morning.

I don’t think the Lorazepam will fix the dread though, because ‘anticipatory nausea’ is only a part of the dread, not the whole: when I think about having more chemo my whole being shudders, body and soul, not just my stomach. The dread consists in knowing what is going to happen to you, and just how horrible it will be, and it creeps up on you as the next dose of chemo approaches, getting bigger and bigger until it blots out the sun.

That’s what dread is, for me: and if Søren Kierkegaard had to undergo a course of chemotherapy, I’m sure he would agree.