Sister Morphine

Day 102

General status update

FEC5 - day 8

Anxiety level/insane euphoria (+/- 1-10,000): we’re adopting this category to allow for the violent mood swings engendered by the steroids. For the last few days I’ve been essentially bat-shit crazy – albeit very cheerfully so - but keeping on with the steroids has significantly decreased the power of the chemo side effects, and lowered my distress levels accordingly. Steroid dose now being reduced, so am starting to calm down, which will probably be a relief to Matron Becky, who was somewhat startled to have been elected World Mum/Mother Goddess yesterday, although she says she’s definitely going to put in for a pay rise.

Nausea demon: very morose over our 5am breakfast, and only had one bite of toast. Worried about him.

Chemo Muse: she sent me off to bed last night at 11pm, saying that I REALLY needed to get some rest now, and I mustn’t think about staying up all night writing again. Odd.

Despair Demon: there were noises coming from the airing cupboard last night, when I got up at 3am to get a glass of water – it seems he had company. Hmmm.

Chemo Brian: he’s really happy because when I popped into TKMaxx yesterday whilst waiting for a prescription to be sorted at Boots next door, I found the ultimate sofa comfort blanket – a huge, soft grey, chunky Argyll hand-knit cotton throw. You can never have enough throws, and I love it so much I fully intend to buried in this one, although not anytime soon, obvs.

PICC line: gone, but not forgotten

State of mind: Still Dexy-energised; no moping

Hair: there

  

Previously on Chemo Nights: it is the 4^th October, 2012, the day of the lumpectomy operation on my right breast. After a 7 1/2 hour wait for the operation, punctuated by some fairly deranged behaviour on my part, headed off by a kindly anaesthetist, the last thing I remember is having my pathetically inadequate veins insulted by another, less kindly, anaesthetist as he struggled to find an adequate venue for his cannula - now read on…..

A breast lumpectomy operation (or WLE – wide local excision), although a fairly major piece of surgery carried out under a general anaesthetic, is normally carried out as a day operation; once you have come round and had some time in the recovery room you can go home the same evening, all being well, and this is what is planned for me.

It doesn’t work out quite like that.

Although I reported to the hospital at 7.30am, my operation doesn’t take place until late afternoon, and I start swimming back into consciousness as I am being wheeled on a trolley into a ward where I will be staying overnight. And this is where my introduction to the awesome power of pharmaceuticals begins, because for the next 24 hours I am buoyed from the after-effects of the surgery on a wave of - presumably - morphine, blithely unaware of what will hit me once I get home.

There is a big dressing on my chest, but I am feeling perfectly fine and insist on R calling my mother and sister so I can tell them exactly how fine I am because they will be worried (I was, apparently, pretty much incoherent, but extremely cheerful). My surgeon, Mr H, pops in to check on me before going home and I greet him with a beaming smile. After R has gone, I bond with the other inhabitant of the ward, a woman called Sheila whose very complicated mastectomy was the operation before mine, and we sit in our beds chatting until the early hours of the morning, exchanging life stories in that extraordinarily intimate way you can do with complete strangers in adverse circumstances, particularly when you are completely off your face with drugs; every now and then we demand more tea and toast from the nurses who, at about 3am, gently suggest that it might be a good thing for us both to get a little rest now.

Early in the morning Mr H appears again for an informal check on me, before starting work for the day, and says I will be able to go home later in the morning.

Mr H’s aftercare, I have to say, is outstanding, and will remain so in the weeks that follow. Of all the breast surgeons in the world, I’m very glad he was mine. 

Later I receive the official ward round from his registrar, a very good-looking Croatian or Serbian who is flirting with the equally good-looking female doctor who accompanies him. Part of his general charm offensive is to describe us surgically battered female patients as ‘lovely ladies’ which, when you’ve just had your once lovely breast mutilated or removed, is rather adding insult to injury; however, he’s a nice bloke, and a good doctor, and I’m still high from the morphine, so I close my mouth without actually uttering the words ‘Don’t patronise me, you t***er’, which is the response which immediately springs to mind

I’m pronounced fit to go home and a couple of hours later, after the admin is all sorted and various drugs prescribed, am finally allowed to do so. The taxi delivers us back to our little eyrie in Gurkha Towers within ten minutes and R installs me on the sofa with books, magazines, and a range of refreshments.  I call a couple of anxious friends, and then start tweeting, saying that I am safely home, feeling fine, and we are now on to the ‘relaxing and recuperating on the sofa’ part of the proceedings. It’s just like BigSisFo said – having a general anaesthetic is no big deal, the operation has gone fine, and I should be up and about in no time.

I have absolutely no idea, not even an inkling, of what is about to hit me.

100 Days of Chemo Nights

Day 100 

General status update:

FEC  cycle 5, day 6

Nausea demon: he’s feeling rather emasculated, and deeply depressed - we had an extraordinarily early breakfast together in the breaking light of dawn, as is usual, but he is having to accept that the extra steroids this cycle have made him lose his edge.

Chemo Nano-Rats: you remember the screaming toxic horror of my stomach in the earlier cycles, right? Well, with the Omeprazole and extra steroids combo, the power of the Chemo Nano-Rats has also been reduced, to say 40% of their former strength. This makes the difference between side effects that are head-bangingly, screamingly unbearable, for this worst week of the chemo cycle, and side effects that are unpleasant but tolerable. This makes the difference between me being a howling, tormented lab rat, running around the flat in acute distress, or curled up in a foetal position and weeping uncontrollably, and me being a human being having a moderately unpleasant time, but managing to get on with everyday activities. Please note, other patients who may be experiencing similar problems. Learn from my stupidity.

Get help at an earlier stage of the proceedings.

Chemo Muse: we’re back on track after yesterday’s little emotional blip, and she has really had me motoring today, in all manner of energetic activity. We are the Dexy Sisters – we rock!

Despair Demon: the Chemo Muse has bundled him back in the airing cupboard again, but given the precarious and temporary nature of steroid-fuelled good spirits and energy, he’s just waiting for another little crash so he can get back to work again.

Super-Senses: my sense of smell has gone ballistic again this cycle – through the open window of my study I can smell every item of food that is being cooked in a four hundred yard radius of Brook Green, W6. But now I know what it is like to be a dog. Except that dogs find the smells attractive.

Chemo Brian: he’s not getting much of a look in at the moment, what with all the lovely steroids. I’ve been going like a maniac again today. Maybe tomorrow, Brian. We’ll get in a bit of serious sofa time soon, I promise.

State of mind: Planning world domination – together with the Dexys and the Chemo Muse, ANYTHING is possible.

Anxiety level (1-10): I’m whizzzzzzzzzzing. You can’t be anxious when you whizzzzzzzzzzzzzzing, can you?

Hair: still hangin’ on in there. Seems to be feeling a bit neglected, what with the now almost total lack of attention after having been the star of the show for so long, but trying to put a brave face on it.

Well, the title of today’s post says it all: this is Chemo Nights, Day 100.

It seems a good time to review progress so far, doesn’t it?

Much to my surprise, I’ve actually managed to write a blog post here on Chemo Nights every day for the last 100 days, starting the evening before my first chemotherapy treatment, when I was ricocheting off the walls with sheer terror; I started writing it to see if that would help me keep sane through what I knew was going to be a truly horrible time – which it has been, and it’s by no means finished yet. The verdict on my current level of sanity is still out, I’d say – but the daily deadline for the blog has certainly kept me occupied and focused at a time when I could have been feeling not just ill and distressed, but also without purpose, so it’s definitely helped a great deal.

I made the blog’s subtitle ‘100 days of chemotherapy’, because it sounded snappy, but six cycles of chemo is actually 18 weeks, or 126 days, and one cycle was delayed for a week, because I had an infection, and so by the time my chemo experience finishes, 21 days after the sixth and final dose on (God willing, inshallah, may there be no more infections to come) Thursday 4^th April, it will be the 25^th of April, and 134 days of Chemo Nights.

It’s turned out to be a much bigger enterprise than I first thought and I’m pretty tired now, both from the cumulative exhaustion engendered by the chemotherapy drugs, and by the effort of the daily writing, which has sometimes been very hard to keep up (some days I really lost it and it was only R’s encouragement that kept me going – he is an excellent motivator) but I want to keep it going to the end, partly because I have more things to say on various cancer-related topics apart from the day to day record of living through chemo, and partly because I want it to be a complete documentation of the FEC chemotherapy regimen from the first day to the last, to provide a comprehensive reference tool for other patients coming to it later, who can learn from my mistakes and misunderstandings, which have been manifold. My experience could have been a lot easier in many ways, which I only know in hindsight, and I hope very much that others can use my experience to make their own less difficult.

I’m happy to say that the blog has acquired quite a sizeable following: it has had about 42,000 hits so far, and is read by 500-600 people  a day - the audience mainly came via Twitter in the first instance. It now has a wide readership including many doctors and nurses, and medical anthropologists and sociologists – as well as other cancer patients and all my friends on Twitter and Facebook.  An extract from the blog has just been printed in a Canadian academic journal of Bioethics - they feel that the modality of this kind of direct reportage of the patient experience is a highly useful one for medical education, in giving access that cannot be gained through more conventional academic writing.

My hospital, the Charing Cross Hospital in Hammersmith, has also taken note of the blog, and I was recently contacted by the Head of Cancer Nursing at the Imperial College Healthcare Trust, of which it forms part, to request my permission to use material from the blog relating to both good and bad experiences of patient care at the hospital as part of their on-going training programmes for medical staff in improving the patient experience. This has already been implemented for the first time at a session a couple of weeks ago. There has also now been one change to hospital procedure after problems I have highlighted in the blog; I’m very happy to say that Charing Cross has taken a very positive attitude to the blog and responded very well to my criticisms.

Simultaneously, I have been raising money for the Haven Breast Cancer Care Centres by asking people to sponsor my chemotherapy treatment, the rationale for which was set out in this blog post back in December

The basic idea is that if you're fed up with being asked  for sponsorship to fund the gap year projects of spoiled teenagers who should be getting a job to pay for their travels, or sponsoring people to do things that they'd rather like to do anyway (abseiling down the Amazon, etc.), why not instead sponsor someone to do something that is the last thing in the world they want to do - endure the hell that is chemotherapy treatment -  and, in so doing , raise money for the truly excellent cause of The Haven Breast Cancer Care Centres, which provide such amazing support to those going through breast cancer. This is, as far as I know, the world’s first ever sponsored chemo: the Haven certainly hadn’t come across one before!

It’s also quite certainly the first ever hamster-sponsored chemo: I discovered belatedly this morning that a certain ‘Jason’, who sponsored me some weeks ago, was actually the pet hamster of my friend @aliceturner on Twitter, who in December won the Chemo Nights award for  'Best Rodent In Snood'. OK, it should perhaps have been a clue that Jason's message was 'I very much admire your elegant snood'. I am rather slow sometimes.

As of today, after 100 days of chemotherapy treatment, I’ve raised £1250.75 so far for the Haven, which makes me very happy indeed - as I have written elsewhere , the Haven has helped me enormously, right from the early days after my diagnosis of cancer back in September of last year.

A thousand quid isn’t bad, but I’d really like to do more, so I’m going to try and get a bit more publicity for the blog, and hopefully attract some new readers and more sponsorship for the chemo – so if there’s anyone out there who has been meaning to sponsor me, but never got round to it, it’s not too late!

This is the link to my Virgin Giving Fundraising page:

http://uk.virginmoneygiving.com/ChemoNights

And, while I’m at it, I’d just like to thank all those who have very generously donated so far – I am very behind with my thank you emails, but you will all get one in the end. It has truly helped me in enduring the horror of the chemo to know that something good is coming of it  - I will never know if the chemo has helped me or not, because that’s not how it works at this stage of the technology, although if the cancer comes back I’ll know that it didn’t work – and I am so grateful to you all not only for donating, but for giving me this psychological boost as well, when morale has been at times so very low. 

To end this 100 day review I’d also like to thank all those people have responded to the blog – which is many times more than those appearing in the comments section,  because most people prefer to respond by email, or on Twitter or Facebook. I’ve ‘met’ so many interesting people, and received so much support and encouragement, and have been delighted to know from other people dealing with cancer, either as patients or as the relatives of patients, that the blog has proved useful and comforting to others in a situation where you often feel so terribly helpless and alone.

I’ve also been receiving wonderful support from my family and friends, both in the UK and in my former home of Ayvalik, on the north Aegean coast of Turkey, and all my amazing Twitter friends, who have helped keep me going by sending me photos and messages and jokes and presents, so that even on the darkest days there has always been something there to cheer me and make me smile. I am a very lucky woman indeed.

I can’t thank you all enough, and it makes me cry just to think about it.

I wouldn't be surviving this at all, of course, without R – he is the light of my life, my greatest support, my love and my best friend. In the last six months of cancer hell, in a relatively new relationship, we have been sorely tried, and it has been unbelievably hard for him, but he has always been there for me, and kept me going, as I have tried to keep him going. There are simply no words adequate to express how I feel about R.

We’re not out of the woods yet, by a long chalk, but at least the end of the chemo is in sight, and things are looking a lot brighter this week than they have for a very long time –  there are another 34 days of  chemo to go, and I hope you’ll keep reading Chemo Nights to the very end.

Thank you.

Matron knows best

Day 84 

General status update

Nose: unspeakable

Hair: unbrushable

Mouth: untouchable

Nausea demon: resting

Chemo Muse: unstoppable

Chemo Brian: unwakable

.

Fatigue/weakness: I’m feeling a lot better in general, now the worst side effects have died down for this cycle, but weakness is really limiting what I can do. I get tired very, very quickly. This seems to be increasingly steadily each cycle. You just have to rest, no point getting frustrated about it: as R keeps saying, all these side effects show that the chemo is working, something I often forget.

Anxiety level (1-10): much reduced now Matron is on the case

State of mind: it is now March – sometime next month, I will be able to go swimming.

There is something deep in the English psyche that warms to the idea of a Matron, especially those of us in middle age with fond childhood memories of the glorious Hattie Jacques as the Matron in the hospital-based ‘Carry On…’ movies: the hospital Matron is associated with efficiency, good order, beds with ‘hospital corners’, and patients being looked after properly, in a prelapsarian Golden Age before the NHS got taken over by layers of middle management and performance targets.

On Thursday I got to meet a Matron for the first time.

Some readers have been wondering whether any of my howls of anguish about the various debacles during my diagnosis and treatment have been heard by, or evoked any response from, the Charing Cross Hospital, and the answer to both questions is yes. A couple of weeks ago I received an email from the Lead Cancer Nurse at the Imperial College Healthcare Trust, the NHS Trust which includes Charing Cross Hospital and four other major London hospitals: Hammersmith Hospital, Queen Charlotte’s and Chelsea Hospital, St Mary’s Hospital and The Western Eye Hospital.

She wrote that she had come across my blog and felt compelled to contact me, both to apologise for the more distressing experiences I described, and to undertake to address the issues raised by them; further, she asked my permission to use relevant material from the blog to give a very direct patient perspective, on both positive and negative experiences of care, in the Trust’s staff training programme on improving the patient experience.

We met for a cup of coffee and a chat, and I was both cheered and impressed by Sarah’s enthusiasm for finding ways to improve the patient experience. I had been quite surprised that she wanted to use material from the blog directly; she pointed out, however, that the power of a first person narrative can make a much greater impact than anonymised and aggregated feedback.

A couple of days after our meeting, I had my fourth dose of FEC, which went rather badly wrong because of the problem with my PICC line; I was still considerably distressed the next day as I was writing an account of it for the blog, and copied the blog post to Sarah even before I published it.

 I won’t repeat the whole PICC line saga here because it’s all in that blog post, but a key issue was that the nurses at Clinic 8, who flush and maintain my PICC line every week in between doses of chemo, had assured me that as long as you could flush saline solution into the PICC line it was fine even if they could not draw blood, resulting in me turning up for two consecutive doses of chemo with a PICC line that was not working properly, according to the chemo nurses.  On both occasions this resulted in harrowing experiences for me in the chemo ward.

Sarah responded to my email immediately, and called a meeting at the hospital with those in charge of the Chemo Ward and Clinic 8 to address what had gone wrong with my treatment. I was then emailed by the Matron for Chemotherapy, who asked me to come in for a chat, and that is how I came to meet a Matron for the first time last Thursday.

The very good news is that no-one else is going to be sent away from Clinic 8 with a PICC line that is not functioning properly; those nurses who apparently forgot it have been very firmly reminded of the policy that unless blood can be drawn from a PICC line, it is not deemed to be safe to use for infusing chemotherapy drugs, and further investigations must be put in place immediately. The Matron, Becky, undertook to arrange for me to have these investigations next week, so that my PICC line would be sorted before the next dose of FEC, but then something miraculous happened which rendered this unnecessary. She looked at my line, flushed it with saline solution, and immediately the syringe filled up with blood, something it had failed to do on numerous previous occasions.

I was awestruck – this woman is like a Horse Whisperer, only with PICC lines. Five different nurses had failed to get blood out of my PICC line, but as soon as Becky touched it, the PICC line stopped misbehaving, got its act together, and the blood positively gushed forth.

Becky has undertaken to keep an eye on the PICC line as we come up to the next dose of chemo and that now makes me feel safe, and confident that we may be able to get through FEC5 without any mishap, which is a huge psychological boost; my previous two experiences left me shattered, and terrified of going back, but I have been assured that every care will be taken to ensure that my final two chemotherapy treatments will go smoothly.

We also spent quite a lot of time discussing the side effects I have been experiencing, and how best to manage them, and even my growing problem of dread and anticipatory nausea before each dose of chemo: Becky is putting me in touch with an NHS complementary therapist who may be able to help me deal with this. This wasn’t something I expected any assistance with, and full credit to Becky, who has clearly read the blog very closely indeed, and had numerous suggestions to make. It seems that chemo patients are usually invited to visit the Chemo Ward before they start treatment, and given advice on what side effects to expect, and how to deal with them, but unfortunately there was a brief hiatus in this practice when I was starting chemo.

Between them, then, Sarah and Becky have responded very fully, and with a very positive spirit, to the various issues regarding my treatment raised here on the blog; not only that, the blog is being used to raise awareness with staff members more widely about problematic aspects of the patient experience, and to highlight examples of best practice. I am very happy to think that my experiences will contribute to improving patient care at Charing Cross, and across the Imperial College Healthcare Trust more generally.

And I’m deeply, deeply relieved that I now have a Matron in personal charge of my PICC line…

Enter the Fairy Godmother, Rachel

Day 60   

General status update: 

Hair: Seems to have stopped falling out for the moment. Go figure. 

Nausea demon: He’s been getting a bit of a look-in again with the new antibiotics, so it’s back onto the anti-emetic drugs. 

Chemo Muse: Pleased with me for getting my blog post out under fire, as it were, yesterday. She seemed to be on the verge of actually smiling, but that may have just been a trick of the light. 

Chemo Brian: We spent the morning together, curled up on the sofa together with Chemo Rat Brian, and he told me tales of life in San Francisco in the days when people wore flowers in their hair. 

Temperature: Was still 38.0 this morning, but has now decreased to 37.5. Excellent. 

Sleep, lack of: Last night I slept in the arms of lovely Lorazepam. 

Fatigue/weakness: Not helped by this horrible virus. No more brisk walks this week, then. I knew writing that I’d been for a brisk walk was just asking for trouble.

Anxiety level (1-10): Considerably lower now that I have been pumped full of IV antibiotics, and come home with more, so am now in position to ward off all 'opportunistic’ secondary infections up to and including the Bubonic Plague. 

State of mind: surprisingly cheerful, considering what’s happened in the last few days. 

Something wonderful happened at the hospital yesterday – someone listened to me. But more of that later. 

Previously on Chemo Nights: I have a viral infection, my temperature has risen above the danger point to 38.2 deg C, and the on-call oncologist has summoned me to the A&E department at Charing Cross Hospital, so that they can run tests to see if I have become neutropenic…now read on:

I finish yesterday’s blog post and publish it before I go, as the Chemo Muse points out that I might not be able to do so later, and then where would we be? Also, it seems like a tiny blow for freedom against my current chemical prison: OK, Chemo, you are forcing me to go to the hospital yet again, but I’m going in my own good time, OK? I do realise how demented this is, given that the personification of chemo only exists inside my own head, whilst neutropenic sepsis works very fast indeed, making time of the essence, but I don’t care. It’s all about clinging on to some tattered remnants of autonomy, like an ancient, mangled comfort blanket that’s largely been eaten by the dog; there may not be much left, but you still want to hang on to it, for talismanic reasons.  

I’m getting to be an old hand now at the A&E routine: I hand over the Big Red Book of Chemo – which is the A&E equivalent of one of those ‘I’m with the band’ stickers at rock concerts - to the receptionist, am called swiftly in by the Triage Nurse, who liaises by phone with my oncological team upstairs as he takes blood samples from my PICC line, confirms that my temperature has indeed risen to the danger zone, etc., and then escorts me to a treatment cubicle. I am thrilled to find that the cubicle contains a nice blue plastic chair, and no bed. Fine by me, I hate hospital beds, and I’m not planning to stay. 

Ten minutes later a devastatingly handsome young doctor in green surgical scrubs, straight out of ER, comes in and looks at me, puzzled. According to his badge his name is Omar. I still have my overcoat on and, as is now customary in these situations, am writing in my notebook.  

‘Have they taken her to x-ray already?’ he asks.

‘Who?’

‘The patient - Caroline Foster’

‘That’s me.’

‘Oh. Right.’

Is it because I’m not bald, do you think?

We rehearse the history of my current distress, and Omar says they will give me some IV antibiotics. I’ve got a viral infection, I say, and given that antibiotics don’t work on viruses, why do you do that? 

He explains that as I have a fever, and the onset of neutropenic sepsis can be so rapid, they cannot afford to wait for the results of the blood tests before starting to treat me. The fact that I have a viral infection is neither here nor there: I’m a heavily immuno-suppressed chemo patient, I have a fever, and they don’t know what might be going on inside my body in terms of opportunistic secondary infections, so they need to treat me as if I am already neutropenic. If they wait until the blood tests confirmed whether or not this is the case, it might be too late. 

I find this argument very, very compelling.

 The doctor explains to me that they will be giving me two different antibiotics, Tazosin and Gentamicin; this is the standard protocol for neutropenia. Then someone appears to take me off for a chest x-ray and as I leave with her, I hear the doctor say that he will see about getting me a bed. I very much want to say really, you needn’t bother, because I have absolutely no intention of lying down on it, but that would be ungracious, so I refrain. 

After the x-ray I am unable to find my way back to the treatment cubicle and stand, baffled, looking about me, searching for some clue as to where I should be heading. Everything is blue, in every direction, and none of the many blue-curtained cubicles looks more familiar than the others. Various members of staff ask if they can help me, clearly suspecting that I am a crazed intruder, and I realise I should not have put my overcoat on again.  

When I say I am a chemo patient they all look pointedly at my non-bald head. Before anyone calls security a woman in surgical scrubs who says she is ‘the boss’ ushers me to a chair and says she will find out where I am meant to be. It’s all very, very embarrassing, and I sit there thinking about migrating birds who can navigate their way over oceans and many thousands of miles to find their way home to their breeding grounds. But then I was a trout in a former life, just swimming along with the current, not a bird. 

Once back in my treatment cubicle, now containing a bed, which I resolutely ignore, the entertainment starts. Across the way is a very old Irish lady, in a wheel chair. She accosts every member of staff who walks past her – and there are many – and demands, in a loud and piercing voice, that they wheel her outside for a while; it is not clear why. Various different dialogues ensue. Some people say they are sorry, they are busy dealing with patients, and move swiftly on; others say they can’t take her outside, because she can’t be left out there on her own; others say they will consult with someone else, and come back. 

It’s 4.12 pm: I’ve only been in A & E for about an hour, and it’s not nearly as bad as last time I was here, with the vomiting. On the minus side I’m feeling distinctly unwell, but on the plus side I’ve got a chair to sit in, this time, so I don’t have to sit on the bed, it’s not too hot, they probably won’t keep me in, and I don’t have any inclination to vomit. It strikes me that these are all slightly negative pluses, but you have to make the most of what you’ve got to work with. 

A nurse pops in, offers to get me a drink of water, and wonders if I wouldn’t be more comfortable on the bed. I say that I’m fine, and prefer to keep off hospital beds as much as possible, as it makes me feel like a patient. Instead of rolling her eyes at my level of denial the nurse, whose name is Catherine, beams at me and says ‘You just do whatever helps you get through this’. I smile back, grateful. Every little helps. 

A passing member of staff then makes a major error by addressing the old lady opposite as ‘Mary’. 

‘My name isn’t Mary, it’s Maria, you feckin’ idiot. WILL YOU TAKE ME OUTSIDE FOR A SMOKE NOW?’

‘I’m sorry, I can’t do that, because I can’t stay with you’

 ‘Oh, Jesus Christ! Just take me outside and leave me there, please!’

Ah, a quick ciggie, that’s what she wants. By this time I’ve been waiting in the cubicle for another half hour, have heard perhaps 15 members of staff  politely declining to take Maria outside, and am rather tempted to wheel her outside myself, and leave her by the fishpond, where you frequently see patients in hospital gowns, still attached to IV drips on stands, puffing furiously away on forbidden cigarettes. 

At this point, however, Catherine and another nurse, Andreia, arrive to set up the drip for the IV antibiotics, which will take about an hour to go into my system. To my delight, both nurses turn out to be fellow swimmers. We have a pleasant chat about pools and distances, and swimming in the sea, while Andreia flushes my PICC line and changes its dressing, all the while instructing her colleague in the importance of keeping everything absolutely sterile, and how to achieve that; she is a very good teacher.  

After the nurses leave me with the drip, something quite extraordinary happens: my Fairy Godmother walks in. 

She takes the unassuming form of a woman called Rachel, who says that she is an Acute Oncology Clinical Nurse Specialist, and she has just popped down to see how things are going. I end up telling her a lot, particularly about the problem of not having a particular person to call when problems arise related to the chemo, and how very distressed this has made me on several different occasions now. 

‘Don’t you have a Key Worker?’ she asks. 

I explain that previously I had Vanessa, my Breast Care Nurse, but that once chemo started the Breast Care Nurses seemed to be off limits: indeed, there is a message on the Breast Care Nurses’ answering machine specifically instructing you to call the Chemo Day Ward with any problems relating to chemo. I add that today I had called the Chemo Day Ward several times without getting an answer, so had ended up once again calling the Chemo Emergency Help Line, which was meant for out of hours calls.

Rachel mentions how busy the chemo nurses are, and I know this from personal observation: administering chemotherapy is highly labour-intensive, and they rarely get a moment’s break. I can see that there isn’t a lot of time to take calls. Rachel adds that she has heard similar stories to mine from a number of other people, and it does seem that there is a gap in the system as far as chemo patients are concerned; she thinks that her boss would be very interested to hear my views - would I be willing to talk to her?  Astonished, I say that I would be very happy indeed to do just that. 

Then Rachel does something even more wonderful. On hearing that the ‘toxic swamp stomach’ side effect of chemo has become even worse than the nausea, this cycle, she tells me that it is not a side effect of the chemo, it is a side effect of the steroids, the Dexamethasone, which can be a serious stomach irritant. I am astonished all over again, and when she tells me to ask the doctor for a drug called Omeprazole, which should protect me against the problem, I practically start weeping with joy. 

How have I managed to go for 3 whole cycles of chemo without finding out this vital piece of information? I vaguely remember reading that ‘indigestion’ can be a problem, but since what has been happening to my stomach has been so hugely toxic, I thought it must be the chemo which, as we all remember, is an intravenous chemical weapon. Indigestion doesn’t really come anywhere near it. I have only found out that this is a problem which can actually be solved because someone who knows about the subject has taken the time to listen to me. 

Before she leaves, Rachel gives me one of her cards, saying that she will only be working at Charing Cross for another 8 weeks, but I am welcome to call her at any time. At this point I am ready to prostrate myself before her in gratitude, but can’t, as I’m attached to a drip.  

After she goes I muse on this extraordinary turn of events: I have been blundering through chemo for the last 58 days like a lost sheep, not knowing where to turn when things went wrong, and getting increasingly distressed at my inability to find – well, someone who cared.  This is not a criticism of the doctors and nurses at Charing Cross; it is a criticism of a system which does not give chemo patients - or is it just chemo patients with breast cancer? - a specific person to call if they have a problem between chemo sessions.  

Chemotherapy is a gruelling, exhausting and deeply unpleasant treatment which lasts for months, involving all sorts of side effects, including the side effects of the drugs they give you to deal with the side effects: it is a baffling labyrinth in which you really need a guide, someone who has the time to listen to you, and advise you on how you can find relief.  But for some reason which is not immediately apparent, chemo patients do not have a ‘key worker’ to call.  Maybe this because we are meant to be under the care of our GPs when we're not in the hospital, but your GP is hardly a 'key worker' - last time I tried to get an urgent phone appointment with my GP, I was offered one in 3 days' time, despite having told the receptionist I was a chemo patient with vomiting problems. I gave up, called the Chemo Emergency Help Line, and ended up in A&E, anyway.

It took Rachel one minute to give me the answer to a problem which has been bothering me for two months, and I only met her because I was in A&E with fever, and possible neutropenia. I’m going to be talking to Rachel’s boss about this problem, and welcome the opportunity; it might just help to change things. I hope so – my first three cycles of FEC have been quite problematic, and there are another 3 cycles, another 60 days or so to go. 

This post is much too long and my midnight deadline approaches: suffice to say that my bloods and X-ray were OK, and they let me go home after treatment, with yet more antibiotics to take for the next week to ward off those pesky opportunistic secondary infections. Many thanks to everyone in Charing Cross A&E department, and the oncology team, all of whom displayed their usual impressive efficiency. And especial thanks to Catherine, Andreia and Rachel. 

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…