Share a Little of that Human Touch

Day 43  

General status update

Hair: Preening itself – the oncologist says if it hasn’t fallen out by now, then it probably won’t.

Nausea demon: Snowbound in Bilbao, according to his increasingly frantic text messages.

Chemo Muse: Wants to stay in north Yorkshire, pretty much has to be dragged onto the train kicking and screaming, as does

Chemo Brian: Traitorous B***ards

Fatigue/weakness: Mental tiredness is the worst at the moment – every atom of my being is longing for all this to stop.

Sleep, lack of: Thinking about simply sedating myself for days 3-10 of FEC3.

Anxiety level (1-10): The anxiety demons are a flock of large birds of prey wheeling and screeching around my head with their claws extended and beaks always dangerously close, and what they’re screeching is ‘FEC3! FEC3! FEC3!’

State of mind: And the raven quoth ‘FEC3!’

Despite the fact that most of the north east of England was blanketed in snow during the night, there is no problem getting into York at 9am this morning – BigSisFo approaches driving in the snow with all the gaiety and zest one might expect of a woman at the wheel of a tank-like four wheel drive Land Rover – and trains to London are all running on time.

Unfortunately.

I collapse sobbing into my sister’s arms at the station – a combination of hormones and fear, I think: and the horrible reality of leaving behind the sanctuary of BigSisFo’s house, which somehow seemed like a cancer and chemo free zone, and having to get on the train and travel back to the coming horribleness of FEC3.

We are back in plenty of time for the appointment with the oncologist at 3; the clinic is allegedly running 30 minutes late, and we are finally called in nearly hour and a half late. Stan isn’t present, sadly: today it is his boss, Dr K.

Unfortunately, it soon becomes apparent that Dr K and I have completely different agendas for this meeting. Mine is to ensure that I get all the anti-nausea drugs I need up-front this time, so I don’t have to crawl around afterwards begging for help from various largely uninterested parties.

 Dr K’s agenda is to reorganise things so that chemo patients don’t come in and see a doctor 1 or 2 days before each chemo treatment, as is now customary at the Charing Cross Hospital – she explains that ‘nowhere else’ does this, and she wants to alter the arrangements for her chemo patients so that they just come in to see the highly capable chemo nurse beforehand, have their bloods done, and then go on to have their chemo the same day, thus saving lots of time for everyone.

Especially, it would seem, the oncologists.

This, she explains, will become the norm at Charing Cross in about 6 months’ time anyway, and this proposed reorganisation is presumably why we have been summoned into her august presence, and not Stan’s. Obviously, this is the first I’ve heard of it and there seems to me to be one big glaring problem with the idea: if you need to have a discussion, as I do today, about exactly which drugs should be prescribed to you this chemo cycle to deal with your on-going post-chemo severe nausea and vomiting problems, then a nurse can’t do that, as only doctors can prescribe the drugs, or make any changes to your current drug regimen. And if you were trying to do it all on the same day, with the big time lapse in finding doctors to prescribe drugs, and then having a long wait for the hospital pharmacy to dispense them… hmmmmm. Seems like this organisational change will make things easier and save time for everyone except any patient who needs anything even slightly out of the ordinary.

I don’t quite grasp all this at the time, what with being tired and anxious and taken unawares and completely terrified about FEC3, and we move on to discuss how FEC1 and 2 had gone.

Here Dr K shows an interesting ability to completely dissociate ideas by

a) apologising, seemingly genuinely, for the two consecutive post-FEC nausea crises and concomitant extreme difficulty I had in getting any help, and then

b) seeming to find it tiresome that I insist on going through in detail all the anti-emetic drugs that will be administered to me both intravenously before the chemo, and afterwards to take home, and

c) expressing surprise that I should require so many different anti-emetics, given that ‘most people’ don’t suffer for very long with ‘delayed nausea’.

R points out to her that I had been suffering from nausea pretty consistently throughout 2 entire cycles of chemo. It is not ‘delayed nausea', it is nausea that never stops. In the end, the doctor prescribes what I ask for, but gives the distinct impression that I am being unreasonably demanding, and that she doesn’t feel it is necessary.

‘So, you’re getting the intravenous FosApprepitant beforehand– and you also want Cyclizine and Domperidone, as well as Ondansetron, to take home?’

I try to explain that after the 2 previous occasions when I have been through long, unpleasant experiences, whilst feeling very sick and distressed, trying to get help from a variety of people who weren’t very interested in giving it to me, I really do not want to be put in that position again after FEC3. Given my nausea history, I need to be prepared for every contingency. And yes, last time I did need to take all those drugs, for far longer than the usual 3 days, simply in order not to vomit.

 

You know what? I am so tired of all this, and so frightened of what is going to happen after FEC3 on Wednesday, and so fed up with doctors who don’t really listen, or engage with what you are saying, and give the impression that they think you are either a) greedy for anti-emetics or b) a hypochondriac with imaginary nausea.

 

I did not choose to have an unusally high propensity towards nausea, and the extreme distress the chemo-induced nausea has been causing me is greatly compounded by the difficulty in getting any assistance with it after the chemo has been administered, if the original set of anti-emetic drugs is not doing the job. That’s why I went into the oncology clinic today determined to sit down with Stan, who is very amenable to discussion, and LISTENS, and thrash out the definitive list of anti-emetic drugs I need so that no further nausea- related emergencies occur during the other four cycles of FEC.

But today I didn’t get to see Stan.

I come out of the hospital feeling exhausted, defeated, disbelieved and un-listened to – and clearly regarded as a nuisance chemo patient, because my reactions to the drugs fall outside the ‘normal’ parameters. Don’t they teach doctors in medical schools about statistical outliers?

It’s not just the treatments that make you feel worse than the cancer - sometimes it’s also the doctors…

 

Some comment on this from R, who is a Professor of Bioethics, and was formerly Reader in Medical Ethics at the Imperial College Medical School, based at Charing Cross Hospital and St. Mary’s Paddington:

‘Dr K is a medical doctor with a PhD, and she’s very, VERY clever, and her real interest is probably in extreme cases and academic medicine, not bog-standard early breast cancer cases like you with 'favourable' tumour characteristics who are undergoing FEC 75, which is the most basic chemo regimen for the most basic of breast cancers. She’s running a clinic where she gets 20 people a day coming in complaining about nausea and their hair falling out. It may be very important to you, but to her it’s same-old, same-old, ‘why are these people whining when they could be suffering from much more aggressive cancers and enduring much more aggressive chemotherapy?’. Constant debilitating nausea just doesn’t cut it. Should you have any kind of really extreme medical emergency, you’ll probably find that she’s terrific’

So, there we have it: Dr K’s agenda today was to reorganise her chemo patients so that after the initial consultation, she doesn’t actually have to see the boring ones with the boring tumours as they go through their boring bog standard chemo regimens. Their problems, if any, are so small THEY DON’T COUNT.

What is so refreshing about Stan, who is not yet an oncology consultant, merely a registrar, is that he has not yet lost the human touch – he listens, he recognises your distress, he remembers that although you may be going through an experience that is very common amongst breast cancer patients, it is also unique, and uniquely distressing, to you.

And then he does something about it.

I’m really worried about what’s going to happen to Stan when they promote him, as they surely will..

 

 

 

And this song is dedicated to R, who also knows all about that Human Touch xx

 

I fought the FEC, and the FEC won. Almost.

Day 26:  

General status update 

Hair: So happy in the snood, it might well refuse to come out again after the prescribed 48 hours is up. It could do with an extended holiday, away from all this stress; it wants a Snood Sabbatical until the chemo is over. 

Nausea demon: Rampant – see below 

Chemo Muse: On steroids, she is TERRIFYING. I just obey her, meekly. 

Paranoia Demon: he has a few points he wants to make, but right now, I’m too busy to listen. Thank you, Dexamethasone. 

Chemo Brian: lying on the sofa, asleep; I think the Chemo Muse slipped him some of my Lorazepam. 

Mouth: holding up – am singlehandedly responsible for major sales upturn in children’s toothbrushes at the King St, Hammersmith branch of Boots. 

Sleep, lack of: slept OK last night despite the steroids, mysteriously. Win. 

Anxiety level (1-10): see Paranoia

State of mind: Can’t talk about that now, I have a blog post to write.

 

Remember that picture of Bradley Wiggins, sitting on an outrageously kitsch golden throne at Hampton Court, smirking and making V for victory signs with his fingers after winning the 2012 Olympics time-trial?

 

That’s the Nausea Demon, tonight.

Another cycle of FEC, another nausea meds crisis: the Nausea Demon has been fighting back hard, and it isn’t until after I start vomiting quite violently early this afternoon that I realise that they had sent me home from the hospital on Wednesday without one of the anti-emetic drugs I had last time, Ondansetron (I am now taking so many different ones, I didn’t realise one was missing until the vomiting made me check).

Ondansetron is one of the powerful, expensive meds; they gave it to me intravenously, before the chemo, but they didn’t give me any tablets to take home, like last time. I remember that last time round they gave me enough tablets for two cycles, if you took them at the normal rate of 3 a day for 3 days. But the nausea last time was so bad, I used up the whole lot while I spent another 3 days trying to get some help from the malfunctioning 24/7 Chemo Emergency Help Line. This seems likely to be the root of the problem. I just need to get a supply of Ondansetron.

 The vomiting and dizziness is getting pretty bad, so I have to work out what to do. The GP had added all the anti-nausea meds to my repeat prescription list, and the doctor’s surgery is closer than the hospital, so that seems the best first port of call.

 I walk round to the doctor’s surgery, in the hope of being more effective in person than on phone, and explain my dilemma. It turns out that this particular drug was the only one that had not been added to my repeat prescription list – perhaps because you’re only meant to take it for 3 days, and they give it to you to take home -  and  the receptionist offers me a telephone consultation with the doctor at 11a,m. on Monday morning, in 3 days’ time.  

She knows I am a chemo patient, because I have told her, and I am standing there in my snood, looking like death warmed up, sick and desperate. These things I know because I unfortunately caught sight of myself in the mirror in the hall as I was leaving the flat. 

That would probably have been a good moment actually to vomit, right all over her desk. However, as per the doctor’s instructions after the last time this happened, I simply say in a firm but courteous voice (albeit also in a clear and carrying tone, so that everyone in the waiting room could hear): 

‘Actually, Dr Slater has told me that as a chemotherapy patient, if I have an urgent problem, I can ALWAYS speak to a doctor on the same day’. 

The receptionist’s mouth purses like a cat’s arse, and I swear her hair actually bristles. She looks at the computer and says, brusquely, ‘Dr Skinner will call you between 5.30 and 6.30pm’. 

‘Thank you very much for your help’ I say, and leave.

 

Back home, this quick and simple fix having failed, and dubious about whether the GP would prescribe me the Ondansetron anyway, what with it not being on the prescription list, I consider the various ‘calling the hospital’ options. I call and leave a message with the oncology secretary, to say I was being very sick again, and to ask her to check with Stan if I should have been issued with Ondansetron to take home.  No reply after half an hour. She may not work Friday afternoons, or be on holiday.

I know I won’t get any joy from the Chemo Day Unit, after last time – this is not their area – so I wait until 5pm to call the 24/7 chemo Emergency helpline – you remember, the one that was out of order for 2 days while I was trying to get help with my first nausea meds crisis.

While I  wait for 5pm to come round, I look again at my personal chemotherapy record book issued by the hospital, in which are written all the drugs they administer to you in the Chemo Ward, and are given to take home, for each cycle; it also includes a handy guide to all the possible types and levels of side effects, colour-coded in green, amber and red in terms of requiring urgent attention.

My current level of vomiting and dizziness is an Amber Alert, it seems: this means I should contact the help-line IMMEDIATELY for further advice. Good; it seems I am not making a fuss over nothing. I’m English; God forbid I should make a fuss over nothing. 

This time, the help-line works, the on-call oncology houseman is paged, and I explain the situation, and outline my reasoning that it is probably the lack of Ondansetron which has led to my current level of gastric distress. The oncologist agrees with me, asks how far away I am from the hospital, and tells me to come straight to A & E, where they will check me out to ensure that nothing worse is brewing, and give me some Ondansetron to take home.

I thank him, and text R to say that I have to go to the hospital to get some more meds, but that it is not a major crisis and he doesn’t need to come with me. Tonight he is having a rare night out, at the leaving drinks for a colleague about to go and work in New York, and I don’t want to spoil it. He needs a break not just from me and the cancer and the chemo, but other burdens he is bearing, which are not mine to share here. Before my diagnosis, 4 months ago, I was helping to support him with these other burdens; now, I have been added to the list. This upsets me more than I can say. I’d rather not tell him at all, but I know he’ll be furious if he only finds out about it afterwards. 

We speak, and I manage to convince him that his presence is not required , and would be positively unwelcome; I will be down to the hospital and back in no time. He is very dubious, but eventually agrees. Good. I can do this myself. I am not going to be a burden 24 hours a day. I can retain some self-respect.

I walk down to the hospital – the saving grace in all this is that we live near enough to walk there – and, clutching my Red Chemo Book, explain my dilemma to the receptionist, who immediately arranges for me to be admitted directly into A & E. She could not be more helpful. I sit down to wait, and am called in by the A& E Triage Charge Nurse 3 minutes later.

He is a perfectly lovely man called Sam, and I explain it all over again to him. He agrees the lack of Ondansetron might well be the problem, and asks me if I think I will be OK to go home, just with more anti-nausea meds. I say, absolutely, I’m sure it will do the trick, I REALLY do not want to be admitted to the hospital, I’m sure that if I get some Ondansetron it will make the nausea tolerable again and I’ll be JUST FINE.

Sam looks doubtful. I’m feeling quite woozy, and I’m probably looking and sounding utterly wretched, so maybe that’s why. He takes my temperature (OK) and blood-pressure (high, but that’s hardly surprising), and goes off to see the registrar–in-charge. The registrar wants bloods taken, to be thorough.

When Sam tells me this on his return he adds that I am entitled to refuse, which puzzles me – why should I mind that they are taking every precaution? I am in no state to ponder the finer points of my Patient’s Rights at this moment, and can’t see why I might be expected to object to blood tests. I’ve had dozens of blood tests in the last few months – one more won’t do any harm.  Is Chemo Brian making me miss something, here? I’ll have to take it up with R, later; he’s a Professor of Bioethics, maybe he can explain it to me. 

I tell Sam, earnestly, that they can do whatever they like to me as long as they will stop me feeling this sick. He takes the blood, and rushes off with it for immediate analysis. At this point I realise that they are quite concerned, and that this is my first real chemo emergency. Sam comes back and escorts me through the ward into a treatment room, to wait for the doctor. I bid him a fond farewell. Five minutes later another nurse comes in and tells me they want to give me some Ondansetron intravenously now, to alleviate the symptoms while I wait for the doctor. I say I think this is a TERRIFIC idea, and roll up my sleeve so he can inject the drug into the PICC line on my arm-

 PICC lines are wonderful! So handy in an emergency! Every chemo patient should have one! 

- and then he changes the dressing, and leaves me sitting on the bed to wait for the doctor. From the next room I can hear the sound of a woman retching, over and over again. Occasionally she has to pause to breathe, and then it starts up again. Wednesday was a very busy day at the Chemo Ward – maybe tonight is Vomiting Friday at the A & E, or maybe she’s just drunk. For her sake, I hope it’s the latter, because if it's chemo-related nausea, then she sounds far worse than me.

 I continue to sit upright on the bed and, despite the nausea, and the wooziness, and my increasing exhaustion, I resist the by now almost overwhelming desire to lie down, and close my eyes. I do not want the doctor to come in and find me in a state of collapse, and then insist on admitting me overnight. As long as I am sitting up, I am not utterly defeated. 

I HATE this – this ricocheting from pillar to post, desperately begging for help. It reinforces the sense of a complete loss of control over my life, now that I am a cancer patient, a chemo patient, at the mercy of the disease, the drugs, and the doctors.

I am sitting lower down now, leaning on my capacious, cushion-like handbag, but I AM NOT GOING TO LIE DOWN. And now there is some help from the Chemo Muse who is, from a distance, observing this situation with huge interest, and is now instructing me to get out my notebook and write a completely contemporaneous account of it, seeing as all I’m doing is just sitting here on the hospital bed feeling sick and dizzy, and not otherwise usefully occupied.
 

Yes. Good plan. It’s better to get out the notebook and start writing, than lying down. I AM NOT, NOT, NOT GOING TO LIE DOWN. 

It’s 7.20 pm, and I’ve been here for about an hour now, and I’m so tired and sleepy, and it’s getting harder and harder not to lie down. I wish the doctor would come. The nausea is starting to abate a little after the injection, but I am so tired. I so want to lie down on the bed. But then the doctor will come in and find me lying down and looking helpless and like a VICTIM and that would be bad. The only way I can keep any control of this situation is by NOT LYING DOWN. 

7.43 pm The doctor comes – her name is Nia, she’s Welsh, and she’s lovely. She takes me through the whole saga again. She says if my bloods are OK, and I can drink a cup of water and keep it down, then they’ll let me go home with enough Ondansetron to get me through the night, and a prescription for more from the hospital pharmacy I can get in the morning. Good.

Nia apologises for all the tests, and everything taking so long, but they have to be super-careful with chemo patients because the risks are so high. I say that’s fine by me, it’s all fine, I’ve seen the video on neutropenic sepsis and know they need to be absolutely sure I am OK to go home.

Throughout this conversation I remain sitting upright.

It strikes me that the worst thing about this calling for help business is the sheer number of times you have to explain the situation to different people – since this afternoon I have repeated the problem to the GP’s receptionist, on voice mail to the oncology secretary, to the on-call oncologist on the Chemo Emergency Line, to the A& E receptionist, to Sam the Triage Charge nurse, and now to Nia , the A& E doctor. That’s six times. No wonder I’m feeling so tired.

Still. If we get it sorted out now, then it won’t happen the next time; although that, of course, is also what I said to myself the last time this happened.

Never mind.

Its 8.37: I have drunk the water, the bloods are OK, and Nia has gone away to get the meds for me to take home, which may take a while. I’m still writing, leaning ever more heavily on my bag, but I AM NOT LYING DOWN.

It’s 8.50: I suddenly realise I am not going to get home in time for 9 o’clock, when a new series of ‘Have I Got MORE News For You’ will be starting on the Dave channel, which is thoughtfully providing this series as a service to HIGNFY addicts feeling bereft after the last series finished at Christmas.

For some reason, this pisses me off more than anything else that has happened all day.

I am so tired, I really, really want to lie down now.

NO NO NO.

The doctor will be here any minute with the meds, and then I can go home

9.00 Nia comes back, apologises for the delay, and says there is only one pharmacist working after hours. She agrees to let me get off the treacherous, tempting bed and go to sit on a chair outside while I continue to wait for the meds to come.

Excellent. No more need to lie down – in the chair I can lean back and close my eyes, It is so much more comfortable than trying to stay upright on the bed, I start wondering if I’m going to get my blog post out tonight. My self-imposed deadline is at midnight, Cinderella style, to ensure that a post is published every single 24 hours during my 100 or so days and nights of chemo. It’s important; mustn’t let standards slip.

There may not be time to proof read and edit it properly before I publish it, so (and I am now typing this furiously at 11.26 pm) I will apologise to you now if this is full of typos. But I have to publish it before midnight because otherwise the Fecking FEC has Fecking won, and that IS NOT GOING TO HAPPEN, ok?

9.10 Nia brings the meds, and I am allowed to go home. I walk back from the hospital, enter the flat, sit straight down at the computer and, at 9.31, I start to type. I am starting to feel better: the Ondansetron is working, and the nausea is abating, and the fresh air has revived me enough to carry on.

 

Thank you, Sam, thank you Nia, thank you on-call oncologist on the Chemo Emergency Help Line – between you, you’ve managed to wipe the Bradley Wiggins smirk off the face of the Nausea Demon, just in the nick of time.

No offence, Brad, but it’s just that that particular smile looks an awful lot better on you…