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.