Goodbye to all that

Day 132 

General status update

FEC cycle 6, day 17

Nausea demon: We’re giving him a surprise farewell party tomorrow night, as he starts his new job in Knightsbridge providing Pregnancy Nausea Services to the wife of a Russian oligarch on Monday. He’s spending most of his time in his room now, doing an online Russian course – he’s getting tutorials via Skype from a woman in Smolensk.

Anxiety level/insane euphoria (+/- 1-10,000): wondering if I could persuade them to give me some Dexys with the radiotherapy treatment as well, but thinking that it’s unlikely.

Despair Demon: he’s not going anywhere, of course.

Chemo Muse: busy reading manuals on swimming coaching in preparation for our new project, also starting on Monday. She’s also bought a whistle, which is worrying.

Chemo Brian: currently absorbed in reading about the history of Ayvalik, and trying to get his head round the Greek-Turkish Population Exchange of 1922 – ‘This is HEAVY, man’ – Yes. It was.

Fatigue/weakness: the really interesting question is how far I will be able to swim on Monday, when I get back in the pool for the first time. I used to do 128 lengths (2 miles). No idea what to aim for on Monday. Maybe ‘aiming’ for anything is not a good plan: I’ll just get in the water and see what happens.

State of mind: slowly adjusting to this strange new post-chemo world, as the final cycle draws to an end.

During two weeks out of three, during chemo, the routine was the same most mornings: after being woken at somewhere between 4 and 6 a.m. by nausea, I would get out of bed quietly, so as not to wake R, walk to the other end of the flat and sit down at the dining table to take all my meds: the Ondansetron, Cyclizine and Domperidone for the nausea, the Omeprazole for the stomach pains, the Dexamethasone for everything, and sometimes the Lorazepam for

the anxiety and dread. 

The Lorazepam was especially useful on the days when the next dose of chemotherapy drugs was scheduled, to take the edge off the fear and loathing as we walked down the Fulham Palace Road towards Ward 6 East at Charing Cross Hospital, where the latest infusions of the FEC drugs – Fluorouracil, Epirubicin and Cyclophosphamide – were waiting for me in their yellow plastic HAZCHEM bags.

All the boxes of medication were kept piled up on the window sill next to the dining table;  I would line them up on the table each morning and take the prescribed dose of each one, washed down with pomegranate juice in a probably futile gesture towards putting something health-giving into my body at the same time as I was ingesting all these drugs to deal with side effects of the toxic FEC trio. This was followed by tea and toast, because you have to take the drugs with food, and the chemo and the Dexys made my body want CARBS.

That was then: this morning I woke at 8, untroubled by nausea, and as I sat at the table a little later it occurred to me that it was time for the drugs to go.

I don’t have to take them anymore.

I gathered up all the packets of pills and put them away in the bathroom cupboard, and the window sill is empty now, except for a small wooden penguin. It’s possible I might need some of them again – radiotherapy treatment can also cause nausea, although probably not on the epic scale of FEC – especially the Omeprazole, because the damage the FEC has done to my stomach may take some time to settle down.

Still, my early morning rendezvous with the Nausea Demon and a heap of pills are now over.

I don’t have to do that anymore; IT’S FINISHED.

Slowly, day by day, FEC is at last starting to let me go, and I'm finally starting to believe that there is life after chemo.

100 Days of Chemo Nights

Day 100 

General status update:

FEC  cycle 5, day 6

Nausea demon: he’s feeling rather emasculated, and deeply depressed - we had an extraordinarily early breakfast together in the breaking light of dawn, as is usual, but he is having to accept that the extra steroids this cycle have made him lose his edge.

Chemo Nano-Rats: you remember the screaming toxic horror of my stomach in the earlier cycles, right? Well, with the Omeprazole and extra steroids combo, the power of the Chemo Nano-Rats has also been reduced, to say 40% of their former strength. This makes the difference between side effects that are head-bangingly, screamingly unbearable, for this worst week of the chemo cycle, and side effects that are unpleasant but tolerable. This makes the difference between me being a howling, tormented lab rat, running around the flat in acute distress, or curled up in a foetal position and weeping uncontrollably, and me being a human being having a moderately unpleasant time, but managing to get on with everyday activities. Please note, other patients who may be experiencing similar problems. Learn from my stupidity.

Get help at an earlier stage of the proceedings.

Chemo Muse: we’re back on track after yesterday’s little emotional blip, and she has really had me motoring today, in all manner of energetic activity. We are the Dexy Sisters – we rock!

Despair Demon: the Chemo Muse has bundled him back in the airing cupboard again, but given the precarious and temporary nature of steroid-fuelled good spirits and energy, he’s just waiting for another little crash so he can get back to work again.

Super-Senses: my sense of smell has gone ballistic again this cycle – through the open window of my study I can smell every item of food that is being cooked in a four hundred yard radius of Brook Green, W6. But now I know what it is like to be a dog. Except that dogs find the smells attractive.

Chemo Brian: he’s not getting much of a look in at the moment, what with all the lovely steroids. I’ve been going like a maniac again today. Maybe tomorrow, Brian. We’ll get in a bit of serious sofa time soon, I promise.

State of mind: Planning world domination – together with the Dexys and the Chemo Muse, ANYTHING is possible.

Anxiety level (1-10): I’m whizzzzzzzzzzing. You can’t be anxious when you whizzzzzzzzzzzzzzing, can you?

Hair: still hangin’ on in there. Seems to be feeling a bit neglected, what with the now almost total lack of attention after having been the star of the show for so long, but trying to put a brave face on it.

Well, the title of today’s post says it all: this is Chemo Nights, Day 100.

It seems a good time to review progress so far, doesn’t it?

Much to my surprise, I’ve actually managed to write a blog post here on Chemo Nights every day for the last 100 days, starting the evening before my first chemotherapy treatment, when I was ricocheting off the walls with sheer terror; I started writing it to see if that would help me keep sane through what I knew was going to be a truly horrible time – which it has been, and it’s by no means finished yet. The verdict on my current level of sanity is still out, I’d say – but the daily deadline for the blog has certainly kept me occupied and focused at a time when I could have been feeling not just ill and distressed, but also without purpose, so it’s definitely helped a great deal.

I made the blog’s subtitle ‘100 days of chemotherapy’, because it sounded snappy, but six cycles of chemo is actually 18 weeks, or 126 days, and one cycle was delayed for a week, because I had an infection, and so by the time my chemo experience finishes, 21 days after the sixth and final dose on (God willing, inshallah, may there be no more infections to come) Thursday 4^th April, it will be the 25^th of April, and 134 days of Chemo Nights.

It’s turned out to be a much bigger enterprise than I first thought and I’m pretty tired now, both from the cumulative exhaustion engendered by the chemotherapy drugs, and by the effort of the daily writing, which has sometimes been very hard to keep up (some days I really lost it and it was only R’s encouragement that kept me going – he is an excellent motivator) but I want to keep it going to the end, partly because I have more things to say on various cancer-related topics apart from the day to day record of living through chemo, and partly because I want it to be a complete documentation of the FEC chemotherapy regimen from the first day to the last, to provide a comprehensive reference tool for other patients coming to it later, who can learn from my mistakes and misunderstandings, which have been manifold. My experience could have been a lot easier in many ways, which I only know in hindsight, and I hope very much that others can use my experience to make their own less difficult.

I’m happy to say that the blog has acquired quite a sizeable following: it has had about 42,000 hits so far, and is read by 500-600 people  a day - the audience mainly came via Twitter in the first instance. It now has a wide readership including many doctors and nurses, and medical anthropologists and sociologists – as well as other cancer patients and all my friends on Twitter and Facebook.  An extract from the blog has just been printed in a Canadian academic journal of Bioethics - they feel that the modality of this kind of direct reportage of the patient experience is a highly useful one for medical education, in giving access that cannot be gained through more conventional academic writing.

My hospital, the Charing Cross Hospital in Hammersmith, has also taken note of the blog, and I was recently contacted by the Head of Cancer Nursing at the Imperial College Healthcare Trust, of which it forms part, to request my permission to use material from the blog relating to both good and bad experiences of patient care at the hospital as part of their on-going training programmes for medical staff in improving the patient experience. This has already been implemented for the first time at a session a couple of weeks ago. There has also now been one change to hospital procedure after problems I have highlighted in the blog; I’m very happy to say that Charing Cross has taken a very positive attitude to the blog and responded very well to my criticisms.

Simultaneously, I have been raising money for the Haven Breast Cancer Care Centres by asking people to sponsor my chemotherapy treatment, the rationale for which was set out in this blog post back in December

The basic idea is that if you're fed up with being asked  for sponsorship to fund the gap year projects of spoiled teenagers who should be getting a job to pay for their travels, or sponsoring people to do things that they'd rather like to do anyway (abseiling down the Amazon, etc.), why not instead sponsor someone to do something that is the last thing in the world they want to do - endure the hell that is chemotherapy treatment -  and, in so doing , raise money for the truly excellent cause of The Haven Breast Cancer Care Centres, which provide such amazing support to those going through breast cancer. This is, as far as I know, the world’s first ever sponsored chemo: the Haven certainly hadn’t come across one before!

It’s also quite certainly the first ever hamster-sponsored chemo: I discovered belatedly this morning that a certain ‘Jason’, who sponsored me some weeks ago, was actually the pet hamster of my friend @aliceturner on Twitter, who in December won the Chemo Nights award for  'Best Rodent In Snood'. OK, it should perhaps have been a clue that Jason's message was 'I very much admire your elegant snood'. I am rather slow sometimes.

As of today, after 100 days of chemotherapy treatment, I’ve raised £1250.75 so far for the Haven, which makes me very happy indeed - as I have written elsewhere , the Haven has helped me enormously, right from the early days after my diagnosis of cancer back in September of last year.

A thousand quid isn’t bad, but I’d really like to do more, so I’m going to try and get a bit more publicity for the blog, and hopefully attract some new readers and more sponsorship for the chemo – so if there’s anyone out there who has been meaning to sponsor me, but never got round to it, it’s not too late!

This is the link to my Virgin Giving Fundraising page:

http://uk.virginmoneygiving.com/ChemoNights

And, while I’m at it, I’d just like to thank all those who have very generously donated so far – I am very behind with my thank you emails, but you will all get one in the end. It has truly helped me in enduring the horror of the chemo to know that something good is coming of it  - I will never know if the chemo has helped me or not, because that’s not how it works at this stage of the technology, although if the cancer comes back I’ll know that it didn’t work – and I am so grateful to you all not only for donating, but for giving me this psychological boost as well, when morale has been at times so very low. 

To end this 100 day review I’d also like to thank all those people have responded to the blog – which is many times more than those appearing in the comments section,  because most people prefer to respond by email, or on Twitter or Facebook. I’ve ‘met’ so many interesting people, and received so much support and encouragement, and have been delighted to know from other people dealing with cancer, either as patients or as the relatives of patients, that the blog has proved useful and comforting to others in a situation where you often feel so terribly helpless and alone.

I’ve also been receiving wonderful support from my family and friends, both in the UK and in my former home of Ayvalik, on the north Aegean coast of Turkey, and all my amazing Twitter friends, who have helped keep me going by sending me photos and messages and jokes and presents, so that even on the darkest days there has always been something there to cheer me and make me smile. I am a very lucky woman indeed.

I can’t thank you all enough, and it makes me cry just to think about it.

I wouldn't be surviving this at all, of course, without R – he is the light of my life, my greatest support, my love and my best friend. In the last six months of cancer hell, in a relatively new relationship, we have been sorely tried, and it has been unbelievably hard for him, but he has always been there for me, and kept me going, as I have tried to keep him going. There are simply no words adequate to express how I feel about R.

We’re not out of the woods yet, by a long chalk, but at least the end of the chemo is in sight, and things are looking a lot brighter this week than they have for a very long time –  there are another 34 days of  chemo to go, and I hope you’ll keep reading Chemo Nights to the very end.

Thank you.

Crash and burn (reprise)

Day 99 

General status update

Nausea demon: we saw in the dawn again together this morning, but the extra steroids and the Omeprazole are definitely helping – this cycle the various stomach side effects are not nearly as acute as in previous cycles. Physical and mental distress significantly decreased. Thank you again, Roma and Becky.

Despair Demon: he escaped from the airing cupboard and accompanied me to the hospital today – it didn’t go well.

Chemo Muse: she rather overdid it yesterday; even she admits that.

Fatigue/exhaustion: acute. It’s getting worse every cycle, and hitting earlier in each cycle.

Chemo Brian: I’ll be joining him on the sofa very shortly – even with the extra steroids day 5 of FEC is bad bad BAD

State of mind: unimpressive

Anxiety level (1-10): ramping up again, on all fronts.

Hair: whatever

  

Had I only retained the sense I was born with, as MamaFo has so very often been heard to say (inscrutable north Yorkshire sayings, no 79), I would have postponed my radiotherapy planning meeting at the hospital today: even with the help of extra steroids, Day 5 of the chemo cycle is not a good one on which to interact with people, especially in a hospital environment with highly skilled medical professionals intent upon performing on you yet more physically intrusive procedures with unpleasant side effects.

I thought the meeting was just to talk about the radiotherapy, which will irradiate my right breast, from where the cancer tumour was removed, in order to prevent a local reoccurrence of the cancer in the same breast –

If you had a lumpectomy without radiotherapy afterwards, there would be a 40 -50% chance of breast cancer returning in the breast; with radiotherapy, the probability of a local reoccurrence is only about 4 - 5%. So the lumpectomy allows you to save your breast, but you can’t really have it without radiotherapy as well – that’s the price you pay for not having a mastectomy and losing your whole breast. The radiotherapy, locally targeted, is thus  quite separate from the chemotherapy treatment, which is systemic and aimed at picking up any circulating tumour cells that may have already drifted into your blood system before the tumour was removed.

- but it turned out that they needed to do a scan of my breast, and draw markers on it, and make calculations as to where exactly in my breast to target the radiation, and as the very pleasant and helpful radiotherapist talked me through all this I could feel my upper lip beginning to tremble, and inside my head I was shouting No! I don’t want ANYONE DOING ANY MORE STUFF TO ME! Just leave me and my body alone now!

I managed not to cry until she went out of the room for a couple of minutes to check something, but then I completely lost it and sat there, tears streaming down my face, thinking I really can’t do any more of this, why can’t they just leave me alone for a bit now, I’m full of poison from the chemo and as soon as that stops, they’re going to nuke me and burn me with the radiation.

Yeah, I think we can say I crashed a little today, Dexys or no Dexys.

As it happened, we had to the postpone the scan, anyway, because I need to go away in early May, back to my former home on the north Aegean  coast of Turkey – an important, long pre-planned engagement involving other people, coming from the USA, organised before my cancer diagnosis. I asked the radiotherapist if the treatment could be postponed for two weeks until late May, and she said that the scan would also then need to be postponed, as 2 months ahead is too long in advance to do it. She is going to confer with my oncology consultant about the delay, and get back to me.

I hope the oncologist is going to be OK with this – until a couple of days ago, I had thought I was just going to have to cancel the whole thing, that I wouldn’t be strong enough to do a big trip so soon after chemo, but then this weekend I thought ‘Sod it – I’ve had six months of hell, of my life totally taken over by the cancer, of belonging to the hospital – surely I can have just this two weeks back for myself?’

I know I’m not thinking very straight at the moment – a weekend of steroid mania, now a big emotional collapse – but I just quite desperately need a break now, after the chemo finishes, and since this trip had been planned long before the cancer struck, it seems right to go ahead with it if I possibly can.

In Ayvalik, where May is warm and sunny, I will be able to sit in the courtyard at the Camel Barn, with a cat dozing on my lap, and get something of myself back. This image has been in my mind again and again over the last few months as I have tried to escape mentally from what has been happening to me by visualising happier places: my old Lloyd loom chair  under the olive tree, the sun, the cat, the soft pink Sarimsakli stone of the the old stone walls of the barn.

picture not posed by a model - that is my actual cat, Ollie, currently being very well cared for by a friend

The Aegean spring is the thing I miss most about my old life - it is incomparable.  A walk through the olive groves filled with wild flowers would do me more good right now than all the chemotherapy and radiotherapy in the world....

I do hope they’ll let me go. 

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...

Les Fleurs du Mal

Day 64  

General status update 

Nausea demon, Chemo Muse, Chemo Brian: they just don’t know what to do with themselves – see below.

Fatigue/weakness: considerable 

Sleep, lack of: n/a 

Anxiety level (1-10): shape-shifting from dread of chemo to fear of neutropenia 

State of mind: resigned  

‘

'Only when we drink poison are we well'

              Charles Baudelaire, Les Fleurs du Mal

I think this afternoon is probably the first time I have ever directly channelled the spirit of a rabid Arctic Wolf but, when it occurs, the sensation is really quite unmistakable. The trigger is a charming young doctor and PhD researcher, who greets me at the oncology clinic today with the following words: ‘You’re looking well.’ 

It is a truth universally acknowledged by chemo patients – at least all the ones I hang out with on the BCC UK forums – that the single most annoying comment of all the many thrown at them by family, friends, enemies, complete strangers and medics is this: ‘You’re looking well’. I reveal this in the spirit of a public service announcement so that you, Gentle Reader, will never end up on the receiving end of a chemo patient’s steroid-fuelled homicidal rage in response to making what you thought was an innocuous and helpful comment. 

Whatever we might look like, WE FEEL LIKE HELL, OK? 

The steroids might make what remains of our hair glossy, and our skin smooth and glowing, the poison might perhaps be giving us some kind of strange toxic bloom, but all of this is entirely illusory: we are being systematically poisoned, with hideous side effects; we may or may not be going to die sooner rather than later; we no longer have any control over our lives, and are trapped in a chemical prison at the mercy of the medical profession; we are frequently on the verge of losing it entirely, and then some fool smiles at us cheerfully and says ‘ You’re looking well’.

Dr S is conducting a research study with chemo patients, to see if any connection can be found between the composition of a patient’s blood, and the level of severity of chemo side effects they suffer. It is a useful study which may help cancer patients in future, I am happy to be participating in it, and Dr S is highly likeable, empathetic and kind, but today she is completely nonplussed, because I’ve had a hell of a week and, most discourteously, I respond to the poor girl’s polite queries by giving her the unvarnished truth. 

I haven’t seen Dr S since I signed up for the study, just before my chemo started. Now she wants a little chat, and to make arrangements for more blood tests after FEC 4. 

‘So, how’s it been going?’ she asks, brightly. 

‘It’s HORRIBLE.’ I am in no mood to mince words. 

‘It’s unspeakably horrible.’ Then, just in case she hasn’t got the message: ‘It’s just VILE.’

‘Oh dear’ she says ‘I’m sorry to hear it hasn’t been going well for you, Caroline.’ 

‘WELL?’ I snarl, ‘It’s CHEMO. I’m being systematically poisoned – in what way can this be expected to go WELL?’ 

By this time Dr S is looking slightly panic-stricken, as well she might when faced with a rabid Artic wolf, thinly disguised as a chemo patient, eyeing up her throat in the manner of one who might be planning to tear it out in the very near future. 

‘But you’ve still got your hair', she squeaks, desperate to remedy the situation 'and it looks lovely.’

‘Yes’ I say slowly, my fury suddenly dissipating as swiftly as it arrived, ‘at least I still have my hair – well, most of it, anyway.’

Later, I have my pre-chemo oncology appointment with a new registrar, Dr V, who has just rotated in; holding my file, he asks me how many cycles of FEC I have had so far, and if I have been suffering from any side effects.

Oh, bloody hell, I think, here we go again – don’t doctors EVER leave any even vaguely representative notes in the files? What do they write in there – their shopping lists? 

I recite my nausea history, I recite all the drugs I need pre-chemo and after chemo, I tell him about the stomach toxicity and that I also need Omeprazole to deal with that, and soon Dr V is au fait with the entire panoply of pharmaceuticals that my body requires to deal with the side effects of being poisoned. I wonder, in passing, if I could leave this Homeric oral history recitation in the form of an MP3 file, in order to avoid having to repeat it all at every meeting. I also tell him about my recent A&E visit, and the viral infection from which I am now recovering. 

Fine – now he just has to do the prescriptions, and then I can get out of here.

Then he looks at his computer screen and says ‘Hmmm.’

What do you mean, hmmmm, I don’t like hmmm, WHAT’S THE MATTER?

He turns back to look at me, and sighs. ‘I’m afraid your neutrophils are right down.’ 

I had the usual blood test before I came in here, and the results are already on the system: neutrophils are a specific kind of white blood cell that help prevent and fight infections, and the normal level of neutrophils in the blood is between 2.5 – 6.0.

or, to be more accurate, normal ANC (Absolute Neutrophil Count) values range from 2,500 to 6,000 neutrophils per cubic millimetre of blood.In order to be strong enough for chemo, your white blood cells must be at a certain level – 1.5. Mine were at 1.5 when I was in A&E last week, but now they have dropped to 1.1.  That makes me mildly neutropenic, and unfit for chemo. A neutrophil level of 0.5 or less would put me in serious danger, and the chemo will destroy more neutrophils, so I can’t have any more chemo until I have created a lot more neutrophils for the chemo to kill.

This is the simple but deadly arithmetic of chemotherapy, and there’s no arguing with it. 

All my aggression gone, I feel like a sad failure. I haven’t made the grade; it reminds me of when I failed my cycling proficiency test. ‘You could come in and have another blood test on Wednesday morning to see if it’s improved’ says Dr V ‘but I’d be happier if you just postponed the chemo until next week. Your body needs more time to recover from the last dose of chemo, and from the viral infection.' 

‘The only thing worse than having chemo is not having chemo’ I say, sadly, but I know he is right. I was startled, earlier, by how weak my legs were when I was walking down the Fulham Palace Road towards the hospital.

My strong, swimmer’s legs. 

‘It won’t make any difference to the overall outcome’, says Dr V. ‘People often have to postpone their chemo until they get a bit stronger.’ 

‘It’s fine’ I say, ‘Really. I could do with the rest. Is there anything I can do that might help the neutrophils recover? Eat spinach?’ 

Dr V laughs ‘I’m afraid the Popeye model isn’t applicable here. No, there’s nothing you can do – you should be fine by next week if you just go home, and rest.’.

I thank him, we shake hands, and then I trudge back up the Fulham Palace Road to go and do exactly that.

Enter the Fairy Godmother, Rachel

Day 60   

General status update: 

Hair: Seems to have stopped falling out for the moment. Go figure. 

Nausea demon: He’s been getting a bit of a look-in again with the new antibiotics, so it’s back onto the anti-emetic drugs. 

Chemo Muse: Pleased with me for getting my blog post out under fire, as it were, yesterday. She seemed to be on the verge of actually smiling, but that may have just been a trick of the light. 

Chemo Brian: We spent the morning together, curled up on the sofa together with Chemo Rat Brian, and he told me tales of life in San Francisco in the days when people wore flowers in their hair. 

Temperature: Was still 38.0 this morning, but has now decreased to 37.5. Excellent. 

Sleep, lack of: Last night I slept in the arms of lovely Lorazepam. 

Fatigue/weakness: Not helped by this horrible virus. No more brisk walks this week, then. I knew writing that I’d been for a brisk walk was just asking for trouble.

Anxiety level (1-10): Considerably lower now that I have been pumped full of IV antibiotics, and come home with more, so am now in position to ward off all 'opportunistic’ secondary infections up to and including the Bubonic Plague. 

State of mind: surprisingly cheerful, considering what’s happened in the last few days. 

Something wonderful happened at the hospital yesterday – someone listened to me. But more of that later. 

Previously on Chemo Nights: I have a viral infection, my temperature has risen above the danger point to 38.2 deg C, and the on-call oncologist has summoned me to the A&E department at Charing Cross Hospital, so that they can run tests to see if I have become neutropenic…now read on:

I finish yesterday’s blog post and publish it before I go, as the Chemo Muse points out that I might not be able to do so later, and then where would we be? Also, it seems like a tiny blow for freedom against my current chemical prison: OK, Chemo, you are forcing me to go to the hospital yet again, but I’m going in my own good time, OK? I do realise how demented this is, given that the personification of chemo only exists inside my own head, whilst neutropenic sepsis works very fast indeed, making time of the essence, but I don’t care. It’s all about clinging on to some tattered remnants of autonomy, like an ancient, mangled comfort blanket that’s largely been eaten by the dog; there may not be much left, but you still want to hang on to it, for talismanic reasons.  

I’m getting to be an old hand now at the A&E routine: I hand over the Big Red Book of Chemo – which is the A&E equivalent of one of those ‘I’m with the band’ stickers at rock concerts - to the receptionist, am called swiftly in by the Triage Nurse, who liaises by phone with my oncological team upstairs as he takes blood samples from my PICC line, confirms that my temperature has indeed risen to the danger zone, etc., and then escorts me to a treatment cubicle. I am thrilled to find that the cubicle contains a nice blue plastic chair, and no bed. Fine by me, I hate hospital beds, and I’m not planning to stay. 

Ten minutes later a devastatingly handsome young doctor in green surgical scrubs, straight out of ER, comes in and looks at me, puzzled. According to his badge his name is Omar. I still have my overcoat on and, as is now customary in these situations, am writing in my notebook.  

‘Have they taken her to x-ray already?’ he asks.

‘Who?’

‘The patient - Caroline Foster’

‘That’s me.’

‘Oh. Right.’

Is it because I’m not bald, do you think?

We rehearse the history of my current distress, and Omar says they will give me some IV antibiotics. I’ve got a viral infection, I say, and given that antibiotics don’t work on viruses, why do you do that? 

He explains that as I have a fever, and the onset of neutropenic sepsis can be so rapid, they cannot afford to wait for the results of the blood tests before starting to treat me. The fact that I have a viral infection is neither here nor there: I’m a heavily immuno-suppressed chemo patient, I have a fever, and they don’t know what might be going on inside my body in terms of opportunistic secondary infections, so they need to treat me as if I am already neutropenic. If they wait until the blood tests confirmed whether or not this is the case, it might be too late. 

I find this argument very, very compelling.

 The doctor explains to me that they will be giving me two different antibiotics, Tazosin and Gentamicin; this is the standard protocol for neutropenia. Then someone appears to take me off for a chest x-ray and as I leave with her, I hear the doctor say that he will see about getting me a bed. I very much want to say really, you needn’t bother, because I have absolutely no intention of lying down on it, but that would be ungracious, so I refrain. 

After the x-ray I am unable to find my way back to the treatment cubicle and stand, baffled, looking about me, searching for some clue as to where I should be heading. Everything is blue, in every direction, and none of the many blue-curtained cubicles looks more familiar than the others. Various members of staff ask if they can help me, clearly suspecting that I am a crazed intruder, and I realise I should not have put my overcoat on again.  

When I say I am a chemo patient they all look pointedly at my non-bald head. Before anyone calls security a woman in surgical scrubs who says she is ‘the boss’ ushers me to a chair and says she will find out where I am meant to be. It’s all very, very embarrassing, and I sit there thinking about migrating birds who can navigate their way over oceans and many thousands of miles to find their way home to their breeding grounds. But then I was a trout in a former life, just swimming along with the current, not a bird. 

Once back in my treatment cubicle, now containing a bed, which I resolutely ignore, the entertainment starts. Across the way is a very old Irish lady, in a wheel chair. She accosts every member of staff who walks past her – and there are many – and demands, in a loud and piercing voice, that they wheel her outside for a while; it is not clear why. Various different dialogues ensue. Some people say they are sorry, they are busy dealing with patients, and move swiftly on; others say they can’t take her outside, because she can’t be left out there on her own; others say they will consult with someone else, and come back. 

It’s 4.12 pm: I’ve only been in A & E for about an hour, and it’s not nearly as bad as last time I was here, with the vomiting. On the minus side I’m feeling distinctly unwell, but on the plus side I’ve got a chair to sit in, this time, so I don’t have to sit on the bed, it’s not too hot, they probably won’t keep me in, and I don’t have any inclination to vomit. It strikes me that these are all slightly negative pluses, but you have to make the most of what you’ve got to work with. 

A nurse pops in, offers to get me a drink of water, and wonders if I wouldn’t be more comfortable on the bed. I say that I’m fine, and prefer to keep off hospital beds as much as possible, as it makes me feel like a patient. Instead of rolling her eyes at my level of denial the nurse, whose name is Catherine, beams at me and says ‘You just do whatever helps you get through this’. I smile back, grateful. Every little helps. 

A passing member of staff then makes a major error by addressing the old lady opposite as ‘Mary’. 

‘My name isn’t Mary, it’s Maria, you feckin’ idiot. WILL YOU TAKE ME OUTSIDE FOR A SMOKE NOW?’

‘I’m sorry, I can’t do that, because I can’t stay with you’

 ‘Oh, Jesus Christ! Just take me outside and leave me there, please!’

Ah, a quick ciggie, that’s what she wants. By this time I’ve been waiting in the cubicle for another half hour, have heard perhaps 15 members of staff  politely declining to take Maria outside, and am rather tempted to wheel her outside myself, and leave her by the fishpond, where you frequently see patients in hospital gowns, still attached to IV drips on stands, puffing furiously away on forbidden cigarettes. 

At this point, however, Catherine and another nurse, Andreia, arrive to set up the drip for the IV antibiotics, which will take about an hour to go into my system. To my delight, both nurses turn out to be fellow swimmers. We have a pleasant chat about pools and distances, and swimming in the sea, while Andreia flushes my PICC line and changes its dressing, all the while instructing her colleague in the importance of keeping everything absolutely sterile, and how to achieve that; she is a very good teacher.  

After the nurses leave me with the drip, something quite extraordinary happens: my Fairy Godmother walks in. 

She takes the unassuming form of a woman called Rachel, who says that she is an Acute Oncology Clinical Nurse Specialist, and she has just popped down to see how things are going. I end up telling her a lot, particularly about the problem of not having a particular person to call when problems arise related to the chemo, and how very distressed this has made me on several different occasions now. 

‘Don’t you have a Key Worker?’ she asks. 

I explain that previously I had Vanessa, my Breast Care Nurse, but that once chemo started the Breast Care Nurses seemed to be off limits: indeed, there is a message on the Breast Care Nurses’ answering machine specifically instructing you to call the Chemo Day Ward with any problems relating to chemo. I add that today I had called the Chemo Day Ward several times without getting an answer, so had ended up once again calling the Chemo Emergency Help Line, which was meant for out of hours calls.

Rachel mentions how busy the chemo nurses are, and I know this from personal observation: administering chemotherapy is highly labour-intensive, and they rarely get a moment’s break. I can see that there isn’t a lot of time to take calls. Rachel adds that she has heard similar stories to mine from a number of other people, and it does seem that there is a gap in the system as far as chemo patients are concerned; she thinks that her boss would be very interested to hear my views - would I be willing to talk to her?  Astonished, I say that I would be very happy indeed to do just that. 

Then Rachel does something even more wonderful. On hearing that the ‘toxic swamp stomach’ side effect of chemo has become even worse than the nausea, this cycle, she tells me that it is not a side effect of the chemo, it is a side effect of the steroids, the Dexamethasone, which can be a serious stomach irritant. I am astonished all over again, and when she tells me to ask the doctor for a drug called Omeprazole, which should protect me against the problem, I practically start weeping with joy. 

How have I managed to go for 3 whole cycles of chemo without finding out this vital piece of information? I vaguely remember reading that ‘indigestion’ can be a problem, but since what has been happening to my stomach has been so hugely toxic, I thought it must be the chemo which, as we all remember, is an intravenous chemical weapon. Indigestion doesn’t really come anywhere near it. I have only found out that this is a problem which can actually be solved because someone who knows about the subject has taken the time to listen to me. 

Before she leaves, Rachel gives me one of her cards, saying that she will only be working at Charing Cross for another 8 weeks, but I am welcome to call her at any time. At this point I am ready to prostrate myself before her in gratitude, but can’t, as I’m attached to a drip.  

After she goes I muse on this extraordinary turn of events: I have been blundering through chemo for the last 58 days like a lost sheep, not knowing where to turn when things went wrong, and getting increasingly distressed at my inability to find – well, someone who cared.  This is not a criticism of the doctors and nurses at Charing Cross; it is a criticism of a system which does not give chemo patients - or is it just chemo patients with breast cancer? - a specific person to call if they have a problem between chemo sessions.  

Chemotherapy is a gruelling, exhausting and deeply unpleasant treatment which lasts for months, involving all sorts of side effects, including the side effects of the drugs they give you to deal with the side effects: it is a baffling labyrinth in which you really need a guide, someone who has the time to listen to you, and advise you on how you can find relief.  But for some reason which is not immediately apparent, chemo patients do not have a ‘key worker’ to call.  Maybe this because we are meant to be under the care of our GPs when we're not in the hospital, but your GP is hardly a 'key worker' - last time I tried to get an urgent phone appointment with my GP, I was offered one in 3 days' time, despite having told the receptionist I was a chemo patient with vomiting problems. I gave up, called the Chemo Emergency Help Line, and ended up in A&E, anyway.

It took Rachel one minute to give me the answer to a problem which has been bothering me for two months, and I only met her because I was in A&E with fever, and possible neutropenia. I’m going to be talking to Rachel’s boss about this problem, and welcome the opportunity; it might just help to change things. I hope so – my first three cycles of FEC have been quite problematic, and there are another 3 cycles, another 60 days or so to go. 

This post is much too long and my midnight deadline approaches: suffice to say that my bloods and X-ray were OK, and they let me go home after treatment, with yet more antibiotics to take for the next week to ward off those pesky opportunistic secondary infections. Many thanks to everyone in Charing Cross A&E department, and the oncology team, all of whom displayed their usual impressive efficiency. And especial thanks to Catherine, Andreia and Rachel.