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.