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