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

 

You've Got A Friend…

Day 35:  

General status update 

Hair: You know what? It’s starting to freak me out that it’s NOT falling out. Just very slightly. 

Nausea demon: Enjoyed himself very much on today’s Big Outing to the Hollywood Costume exhibition at the V&A. Had to drag him away from where he was standing looking longingly at the Darth Vader outfit. 

Chemo Muse: SHE seems to fancy herself as Scarlett O’Hara, given the amount of time she spent admiring the notorious dark red ball gown. Vivien Leigh had a waist the size of a gnat, did you know that? Not sure that the Chemo Muse could lever herself into it, unless she did a bit of shape-shifting. Which I suppose she could, what with being either a) a supernatural being or b) an artefact of my chemo-crazed mind. What’s left of it. 

Chemo Brian: He stayed at home to keep the sofa warm, having established that none of Jack Nicholson’s costumes from Easy Rider were going to be on show. He has claimed first dibs on attending the David Bowie exhibition in March, though; he claims to have partied backstage with Ziggy Stardust. How much of all this is true, no-one can tell, although I do believe that his claim that his second ex-wife was once Robert Plant’s girlfriend, on the grounds that Robert Plant slept with just about every available woman in the Western world during his Led Zeppelin days – allegedly.. 

Fatigue/weakness: continuing, but not as bad as earlier in this cycle 

Sleep, lack of: n/a

Anxiety level (1-10): quite high, at the V&A, being amongst so many people, and terrified of anyone sneezing in my direction. I need to get out more. 

State of mind: Much better, now that I’ve seen Dorothy’s Ruby Slippers, Darth Vader, and Marilyn's iconic air-blowing-up-her-skirt dress.

A couple of months ago, when I was still struggling with the idea of having to have chemo, my best friend told me about someone she knew who had recently finished a course of chemotherapy for breast cancer; this woman had derived a great deal of support from a group of friends she had made on-line, who were experiencing chemo at the same time. I thanked her for the information, and mentally discarded it; I had plenty of real-life support from friends and family, in fact so much I was practically fending it off with a stick - why would I need to talk to strangers on the internet about this nightmare? 

A few weeks later, after I had delayed my chemo for a month, because I felt neither physically or mentally ready to cope with it, my friend relayed another message from the chemo veteran about her virtual support group: just give it a try, it helped me enormously. By then I was feeling very lost, somehow. My family and friends had all breathed a huge sigh of relief that I’d finally agreed to have the chemo, and wasn’t going to run away to Goa and sit under a palm tree eating mangoes

- I did actually get as far as looking up the cost of plane tickets, at one point, so they were right to be worried -

but I couldn’t help feeling it was all very well for them; they weren’t going to spend 18 weeks having toxic chemicals injected into their veins, and go bald. I’d signed up on the dotted line, but I was still very, very conflicted about going ahead with the treatment. It struck me then that maybe I wasn’t the only one who wasn’t entirely happy about going along with the programme; maybe I should look at this online thing, and see what other people thought. Maybe it would help me come to terms with it (please bear in mind that at that time I was already well aware, because my oncologist had told me so, that in my case there was only a 7- 8% chance that chemotherapy would help me; conversely, there is a 92 -3% chance that it will have no effect whatsoever on deterring my cancer from returning)

In retrospect, I am only sorry that I waited for so long.

The website in question is that of Breast Cancer Care UK, a charity whose stated aim is to ensure that every person affected by breast cancer gets the best treatment, information and support.

 They work towards this aim as follows:

We combine the personal experiences of people affected by breast cancer with clinical expertise, using this in a unique way to:

 •provide information and offer emotional and practical support

 •bring people affected by breast cancer together

 •campaign for improvement in standards of support and care

 •promote the importance of early detection.

 If you look at their website, you’ll see the many different ways BCC UK goes about this, but the one I want to highlight here is the one that I have personally benefitted from: their online community, which you can find here. This is the place where women who now have, or suspect they might have, breast cancer go to talk, find out information, exchange experiences and help each other through whatever ordeals they are facing.

 

 In the same way that The Haven offers physical locations (in London, Leeds and Hereford) where women and men affected by breast cancer can go to get help and meet others in the same situation, the  BCC forums provide virtual places to hang out with people who are experiencing, or have experienced, whatever you are going through.

 BCC itself also offers telephone helplines for people in need of  information and advice, and I’m sure they are excellent, but my own experience has been limited simply to talking to other women. There are forum sections on every conceivable topic to do with the diagnosis and treatment of breast cancer, and the physical and psychological upheavals that accompany it; of particular interest to me, given that I discovered the community quite late on in the whole process, was the forum for those undergoing chemotherapy treatment. There I discovered that every month a new thread is started for women just about to begin chemotherapy, so that they can form a virtual support group as they venture into the terrifying world of chemo, and stick together as they go down a long and difficult road.

I joined the December 2012 thread, and have found there some true friends: we were, and are, all terrified, but it helps so very much to be terrified together. Not only that, but there is a constant stream of women who are further ahead than us in the process, or who have finished it some time ago, who come back and post on our thread to offer us words of encouragement and advice,  and we can look ahead to the lived experience on their threads to see what might be going to happen to us later on.

 

I would never have known to demand the intravenous anti-emetic Fosapprepitant upfront if I had not read about it on this forum, and that piece of information probably saved me from rapid rehospitalisation the day after my first dose of FEC, given my very unfortunate, extremely high, propensity towards nausea.

 

Fosapprepitant is expensive, and normally only prescribed to people AFTER they have experienced severe vomiting  with the first dose of chemo: that's a rough and ready guide to who will really benefit from it. Like a trial by ordeal.

 

The BCC forums are full of information like this gained from direct experience - they tell you things doctors cannot, or will not, tell you.

 

The constant theme that you will find on the BCC forums is that chemo, whilst highly unpleasant, is ‘doable’, and you hear this NOT from oncologists who cheerfully administer toxic and painful treatments they will – if lucky – never have to experience themselves, NOR from family and friends who just want you to stop whining and making such a huge fuss about throwing up for a few months and having your head shaved. 

No, you hear it from very recently bald women who have earned themselves the equivalent of a Master’s degree in the pharmacology of anti-emesis, and know exactly which anti-nausea drugs are the most effective, because they have been there, done that, and got the f***ing t-shirt.  

And when they tell you that chemo is ‘doable’ then, and only then, do you finally come to believe that it is worth doing, and that maybe you will be able to do it. 

These women showed me that it is possible to do chemo, and survive it, and come out the other end - not exactly the same person you once were, because she’s gone and you’re never going to get her back, but maybe a stronger version: someone who has earned her spurs enduring the grisly initiation rites of this very exclusive club of which no-one ever chooses to become a member. It's important to note that not everyone can tolerate every type of chemo: a few people react so badly that they don't finish the treatment, or have to change to another type; but 'doable' is the word you hear again and again, from those who have endured it, and come back to tell you about it.

So my advice to anyone who has found a lump, and is worried that they might have breast cancer, or anyone who has just been diagnosed and is experiencing the crazed combination of shock, denial, anger and sheer disbelief that the early post-diagnosis days bring, is: 

Make your first port of call the BCC UK website. I wish had gone there much sooner in the process. You will find friends there, friends who know whereof they speak. And that makes all the difference in the world.

 

However alone you may feel right now, you've got a friend..

 

If you believed they put a man on the moon, man on the moon…

  

Day 9

General status update

Hair: no change

Nausea Demon: confined to his room, and sulking. Playing loud rap music to make his feelings clear

Sense of smell (NEW!): magnified by about 300x. I can smell cooking smells from 200 yards away, and they TURN MY STOMACH. I am turning into a dog. A dog with nausea.

Anxiety level (1-10): They’ve sedated me, dude. And I love them for that.

State of mind: None, currently

 

 

So I’m on the phone first thing Monday morning to Sister Chemo at the Chemo Day Unit (Monday-Friday, 9.00 am -5.00pm)  - the so-called Chemo 24/7 Emergency Help Line, as you will remember, having been mysteriously unavailable over the weekend  - 

requesting urgent assistance, given my continuing acute gastric distress, and the fact that my supply of anti-emetic drugs, which should have lasted for a couple of weeks, is about to run out.

Sister Chemo is very nice, but it is quite clear that she will not be providing any active assistance to alleviate my distress; this kind of thing, it seems, is Not Her Problem.

 ‘Oh, your GP will give you something for now,’ she says, ‘and then when you come for the oncology clinic appointment in 2 weeks’ time, before your next dose of chemo, you can talk to the consultant and get it sorted out, if it’s still a problem.’

She then adds, in a confidential tone: ‘I tell you what, though, you should ask your consultant for a drug called Fosapprepitant for your next chemo cycle – it’s MARVELLOUS.’

 

‘I’ve already had that’ I reply, perhaps a little sourly. 

‘Oh dear’ says Sister Chemo ‘OH DEAR’.

So I call my GP’s surgery, tell the receptionist I am a chemotherapy patient with severe nausea problems who cannot come into the surgery right now because of the infection risk, and request a telephone consultation with the doctor as soon as possible.

She sighs.

‘We’re very, very busy right now’, she says ‘So he can’t talk to you today, but I can fit you in for a telephone consultation between 5.30 and 6.30pm tomorrow evening’. So that would be another 36 hours of unrelenting nausea without any help. I had been told that I should DEMAND to speak to the doctor if necessary, and that they are obligated to let me, but I’m too weak and upset to argue at this point, and I don’t want to break down and start weeping uncontrollably on the phone. Or begging.

 

So much for the urgent and immediate response to the needs of chemo patients – it hasn’t been a great start. By now I have tried all the prescribed official channels and got Absolutely Bloody Nowhere. So it’s time to try something else. I have one last telephone number I can try – at my last oncology appointment before chemo I had discussed with Stan the whole ‘How do I get help if things get bad between hospital appointments?’ issue, and he had given me the Chemo 24 hr. Emergency Helpline number, and reassured me that it was manned AT ALL TIMES, and that I would never be more than a quick phone call away from help.

 

 As an afterthought, however, he then gave me the number of the oncology consultants’ secretary ‘just in case’, saying that if all else failed I could give her a call, she would relay the message to him, and he would send a scrip down to the hospital pharmacy to issue me whatever meds I required. This would only work on a week day, obviously.

 

Calling this number is what I now think of as the Chemo Joker – it saved me.

 

I called the number, began talking, and then burst into tears. Through the sobs and the hiccups, while she made soothing noises and tried to calm me down, I explained to the oncology secretary - a truly wonderful woman called Dina whom I now love very much - the extent and duration of my nausea predicament, its on-going status, and the fact that not only did I need to add some new, different meds, but that the ones I already had were going to run out by the following morning.

‘I’m putting this into an email’ she said ‘and I’m sending it to Stan immediately. Give me the number he can call you back on. HE WILL CALL YOU, I promise.’

Stan called back within ten minutes.

Finally, the cavalry had arrived.

He quickly assessed the gravity of the situation, including my by this point very precarious mental state (the mantra ‘Goa, Goa, Goa, run away to Goa’ was now repeating itself in an endless loop in my brain), and said he would prescribe me more of the Domperidone and another anti-emetic drug, Cyclizine, which often proved helpful in particularly recalcitrant cases of severe and continuing nausea. He then suggested, gently, that an anti-anxiety drug might also be helpful at this point, which was music to my ears. Something along the lines of a horse tranquilliser might be good, I said, but he decided to give me Lorazepam. Stan promised that the drugs would be available for collection from the hospital pharmacy by mid-afternoon.

 

AND THEY WERE.

 

As I’ve said before, Stan’s the Man.

 

I should add that he apologised profusely for the problem with the Chemo 24 hr. Emergency Help Line, which was apparently unprecedented - the hospital has been having computer problems, and it was being fixed today. My GP, when I finally spoke to him, also apologised for his receptionist and assured me that I can ALWAYS speak to him or another doctor the same day if I have any further problems. And he has put ALL the anti-emetic drugs on to my repeat prescription list, so I can get them immediately when needed. This makes me feel much, much more secure, given that there are 5 cycles of chemo to go, and if there is one thing that is certain, in addition to death and taxes, it is that the side effects of the chemo will get worse as it continues.

The Cyclizine is helping enormously: the nausea hasn’t gone away, and I think it may well stay with me for the entire 100 Days of Chemo, but the new drug has somehow made it bearable, which before it wasn’t. It’s very hard to describe – the nausea is still sitting in my stomach, I can feel it, I’m still queasy ALL the time, but it’s not so sharp. I am going to be able to live with it, which is just as well, because I have no choice but so to do. 

In the evening, after R had brought me the drugs, and I had been very effectively sedated by the Lorazepam (which brings an entirely new meaning to the expression ‘Chemical Cosh’), I googled Cyclizine to see if there was anything I should know about this new drug. 

And Wikipedia told me that Cyclizine was the anti-emetic drug chosen by NASA as the space emetic for the astronauts who made the first landing on the moon. 

‘There you go, then’ said R, looking up from his Killer Sudoku, ‘If it’s good enough for Neil Armstrong, then it’s good enough for you’.