Calling all Überneutrophils…

Day 114 

General status update

Fatigue/weakness: I’m so weak now I just want to lie down on the sofa with Chemo Brian and stay there – I may have to get a taxi to the hospital in the morning because I’m not sure I can manage the walk.

Anxiety level/insane euphoria (+/- 1-10,000): sudden leap in anxiety level with the realisation that if they postpone the chemo on Thursday, I won’t be getting the Dexys and concomitant insane euphoria for 7 more days. It’s not that I’m addicted, but I’m so feeble I could really do with a bit of that mad Dexy rush right now...

Nausea demon: back from his monastic retreat, which he apparently found very spiritually uplifting – maybe he’ll convert and become an ex-Chemo Demon. I wonder if they’re allowed to do that, or if Chemo Demon apostasy is punished with…. how would you punish an apostate Chemo Demon? Sending him to hell wouldn’t really be much of a threat, would it?

Despair Demon: I’ve been finding him rather trying in the last couple of days, as his constant conjuring up of the worst possible outcomes is seriously morale-lowering, especially when you’re feeling very weak. So I had a quick word with the Chemo Muse, pointing out that her ex-boyfriend is messing with my head and my motivation, and asked her to intervene. She said no problem, and simply shook her snaky locks in his direction, which had him immediately transfixed in the manner of a mongoose in the presence of a King Cobra. Then she allowed him to take her to Starbucks for an Espresso Macchiato, and I got a little peace and quiet.

State of mind: The fear of not having chemo on Thursday is nowmuch  greater than the dread of having chemo on Thursday. Go figure.

Hair: currently non-combatant.

Today I have been mainlining pomegranate juice, in the hope that its fruity vitamin-dense crimson goodness will perk up my neutrophils, as well as channelling Nietzsche in the hope of willing them on to power so that I will be strong enough to have my sixth and last dose of FEC on Thursday.

Pomegranate–fuelled Überneutrophils, that’s what we need right now…

I have to be at the hospital at 8.45 tomorrow morning for Matron Becky to do my bloods so that they will be processed in time for my pre-chemo meeting with the oncologist, whichever oncologist it happens to be, consultant or registrar; you never get to know this in advance, which is quite annoying. With the surgeon you always get to see the surgeon himself, however many acolytes he may have in attendance, and can plan questions/conversations accordingly, but getting to see a consultant oncologist seems to be much like being granted an audience with the Pope – it doesn’t happen very often, and there’s no predicting when.

Tomorrow everything will depend on the wretched neutrophils: if they’re below the cut-off point of 1.5, which means 1,500 cells per microliter (= cubic millilitre) of blood, then I will not be allowed to have FEC6, however much I beg and/or whine, because they really don’t want my 6 inglorious cycles of chemo to end up with a FEC-related fatality giving the lie to the infamous ‘FEC is well-tolerated’ oncological motto.

I was discussing the phrase ‘well-tolerated’ with my Cyber Chemo Buddy Cressida, a veteran of two different courses of chemo, the other day - she has also endured Taxotere, FEC’s even nastier evil twin, which turns your nails black and makes the skin on your toes and fingertips blister and burn before dropping off, which serves at least to distract you from the constant agonising joint pain - and she said that what ‘well-tolerated’ REALLY means is ‘doesn’t actually kill you’, which is the only outcome oncologists are really interested in.

We then talked wistfully, not for the first time, of how much better it would be if all oncologists had to experience a small dose of chemo themselves as part of their training. I did once suggest this to Stan, my late-lamented first oncology registrar who has now rotated off to pastures new, and he looked at me with an expression of absolute horror:

‘We couldn’t do that’ he said ‘it’s poisonous.’

Please keep your fingers crossed for me and send positive vibes – or, better still, threatening messages – to my indolent neutrophils tonight; if they don’t do their stuff tomorrow morning it’s going to mean yet another week incarcerated in the chemical prison, waiting for parole…

Fo Restante

Day 65: Resting 

Today, I have been in theory been resting, as per the instructions of my oncologist, so that those now rather scarce neutrophils in my blood will start regenerating, and I will become strong enough to withstand more chemo. They can give you injections to help this process along, but I’d much prefer to do it naturally, if I can – there are more than enough drugs in my system already, and the drugs they inject you with bring, of course, yet more side effects…  

My lovely friend Andrea Gillies was coming to visit me today, and I probably should have cancelled it, but she is only in town briefly from Scotland and I have been so looking forward to it, so I didn’t. 

We had the BEST time. 

Andrea surprised me with all manner of pink-themed presents, it being Valentine’s week, including some quite outrageously beautiful flowers (which proved very difficult to photograph- this really does not do them justice)

strawberry cupcakes, cherries and rosé wine.

As I was still coughing rather a lot we decided, for purely medicinal purposes, to try a little of the blood orange vodka I gave R for his birthday; combined with strawberry cupcakes, it proved quite extraordinarily soothing, so we tried a little more. By the early evening, when we had set the world to rights, and laughed a great deal, and Andrea was well overdue to meet some friends down town, we were both feeling very soothed indeed.

And now I really must rest, but I'm sure the level of my neutrophils is shooting up already: the mind and body are so closely linked, and nothing improves your spirits better than laughter, and the company of good friends.

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.