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..

 

'It's Dogged as Does It'

Day 29:

General status update

Hair: Hanging on in there. Both Hair and I now cautiously hopeful that we may be confined to thinning, and perhaps a monkish crown, rather than total hair loss.  

Nausea demon: After an inspired 72-hour campaign of single-handed guerrilla warfare, has finally been cornered by the meds. Still firing the odd shot, but he’s unlikely to be able to make another major breakthrough until the next FEC cycle.

Chemo Muse: Gave up on me in disgust for today, and went to have her nails done

Chemo Brian: The Best of all Possible Brians: we spent most of today together on the sofa, slumbering contentedly in one another's arms.

 

Sleep, lack of: n/a

 

Anxiety level (1-10): wah?

 

State of mind: This is day 6, tomorrow is day 7, and after that it will be the sunlit uplands of day 8.

I come slowly to consciousness this morning, the byways of my brain filled with the slowly swirling mists of a post-Lorazepam fog:

Mmmmm….so nice and warm…sleepy…. time?.....mmmmm…doesn’t matter…

Then the nausea wakes up, too, but rather less quickly than yesterday, and we greet the day together.

The Lorazepam had been necessary because at the end of yesterday, the accursed day 5 of the chemo cycle, and its struggle against the nausea, fatigue and wider toxic effects of the chemo, I just completely lost it. The nausea was bad enough, but for the whole day it had also felt as if my arms and legs were being inflated, that some unseen mouth was blowing me up into a facsimile of the Michelin Man, that would eventually explode into a thousand tiny pieces.

Periodically, throughout the day, I had to inspect my various extremities to assure myself that this was not, in fact, the case. My arms and legs looked perfectly normal from the outside, but from the inside it felt as if spontaneous combustion could be going to happen any time soon.

And then there was the arrival of the plague of Chemo Nano-Rats, laying toxic waste to the inside of my stomach. Quite separate from the nausea, it feels as if there is a horde of miniature rodents scrabbling about inside there, slithering and sliding down the slippery stomach walls and digging their tiny claws in sharply for some purchase as they try, with increasing urgency, to nibble their way out of me from the inside. The pain isn’t acute, but the overall feeling of internal toxicity is overwhelming.

But then I am being systematically poisoned with chemical warfare agents, so I shouldn’t really be surprised.

 

I remember the oncologist smilingly telling me that the FEC chemo regimen is ‘well-tolerated’. Would that he were to be given the chance to tolerate it, too. At 11.30 yesterday night, having more or less kept it together through a very trying day, the dam finally breaks. Lying on the bed, having just reassured R for the 27^th time that I am perfectly fine, my brain implodes, my mouth opens and I simply begin to howl.

And then I weep and weep and I weep, not over anything specific but just ALL OF IT, the overwhelming tide of horribleness that has been drowning me since that day in August when I found the lump in my breast, after going for a brisk 2 mile swim. Every day I’m fighting to stay on top of it, and look forward, and not succumb to despair, and remember that my prognosis is actually very good. And the writing and keeping busy helps enormously, as does the love and support from R, my family, and an army of friends both real and virtual. I am so loved and looked after, and in many ways so very, very lucky.

 

But sometimes it is all just too much to keep contained

 R comforts me, and calms me, and soothes me to bed and unconsciousness after I take a tablet of Lorazepam, a blessed temporary fix; truthfully, though, nothing and no-one can help you in the worst days of the cycle, when the Chemo Demons are free to torment you in any way they please, and this is by far the hardest bit to get through of everything I have so far had to endure.

 In my head is a picture of the chemo cycle as painted by Hieronymus Bosch, located in the special circle of hell reserved for chemotherapy patients: the patients writhing and helpless as the Chemo Demons play, spearing them on their pitchforks, practising old tortures and inventing new ones.

 

 

That’s where I am, and that’s where I will be for some time to come, and there is no way out, or back: the only way to bear it is simply to keep on going forward, step by painful step, one foot after the other, again and again and again.

In the final volume of Trollope’s Barchester Chronicles, a terrible calamity falls upon Mr Crawley, an impoverished, high-principled but absent-minded cleric, who stands accused of misappropriating a cheque for twenty pounds; unable to account for how the money came into his hands, he is called before the magistrates and stands to lose his freedom, his honour, his livelihood and his family. In acute mental torment at what lies before him, he goes out walking, trudging for hours through the countryside in the rain. Then he meets an acquaintance, an aged brick-maker from Hoggle End, who sees that something is amiss with ‘Master Crawley’ and offers him some sage words of advice:

'Tell 'ee what, Master Crawley;--and yer reverence mustn't think as I means to be preaching; there ain't nowt a man can't bear if he'll only be dogged. You to whome, Master Crawley, and think o' that, and maybe it'll do ye a good yet. It's dogged as does it. It ain't thinking about it.' Then Giles Hoggett withdrew his hand from the clergyman's, and walked away towards his home at Hoggle End. Mr. Crawley also turned away homewards, and as he made his way through the lanes, he repeated to himself Giles Hoggett's words. 'It's dogged as does it. It's not thinking about it.'

 

It’s dogged as does it – one step at a time.

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…

 

 

 

Wishing you all a Blazingly Good New Year…

Day 22
 

General status update

Hair: Panic-stricken about FEC 2 and trying to retract itself into its follicles, but I think that only works with testicles

Nausea demon: Seems to be arranging some kind of New Year’s Eve party with the

Chemo Muse, who is busy trying on, and then discarding on the floor, numerous party outfits. If she doesn’t put them all back on the hangers, then there is going to be trouble.

Sleep, lack of: Currently acute - I went to bed at 3.50 am this morning, and was up at 8.

Anxiety level (1-10): Rocketing, but I’ll tell you why tomorrow.

State of mind: See Anxiety, above.

 

 

 

 

New Year’s Eve at the oncology clinic turns out to be much like any other day: although there is still some festive tinsel around, the holiday lull seems to be over and the room is, as usual, full of bald men, and women wearing headscarves, or knitted woolly hats – no wigs in evidence.

When I am called in to see Stan, he greets me cordially, comments on how well I am looking, and asks how things have been since he came to my rescue during the Great Nausea Meds Crisis on day 7 of my first chemo cycle, 2 weeks ago.

‘PerfectlyfineMyonlymajorsideeffectssofararethenauseaandsleeplessnessandthewhole
hyperactivitythingdoyourememberyoutoldmeI’dbesurprisedbyjusthowmuchIcoulddo
whileIwashavingchemo,well,youwereabsolutelyrightandI’vebeenworkingamazinglyhard
onawritingprojectI’vewrittenmorethan20thousandwordsnowandI’vealsoraisedabout450
quidforTheHavensofarbygettingpeopletosponsormychemoandIhopetoraisealotmorebytheend..’

I am forced to pause for breath, but before I can continue gabbling Stan lifts his hand and says ‘Hang on a minute. Did you just say you were getting people to sponsor your chemo?’

‘Yes!’ I beam at him, ‘I think it may quite possibly be the world’s first ever sponsored course of chemo.’

‘I think you are very probably right there’ says Stan, slowly.

Then he smiles at me ‘Caroline, I’m proud of you for making something positive out of this – I know how terrified you were of having chemo’.

I manage not to burst into tears, but it’s a close-run thing.

Stan, of course, has absolutely no idea that he has been co-starring in this blog for the last 3 weeks (along with Hank the Hungarian Visla – it’s a close call as to which of them has the most fans), nor that several women have already indicated to me that when they get cancer, they definitely want Stan to be their oncologist. I decided not to mention any of that – we wouldn’t want him getting big-headed, or anything.

Today’s YouTube clip is a special New Year’s Song by the wonderful Northumbrian folk singers the Unthanks; it accompanies pictures of a traditional north of England New Year’s Eve ceremony, the Allendale Tar Barrel Procession, another fiery event of (possibly spurious) Viking origin.

 This song is dedicated to @fionalaird by way of apology for her Hamster Viking Funeral-related distress. Look, Fiona - lots of flames, and NO dead hamsters!

 

 

Happy New Year!

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’.