Wednesday, 27 August 2014

41. The VIP lounge

I am sitting in the Vile Intravenous Poison lounge.

This is a report from the lion's den. I think it is going to be a long post, because I'm observing everything and making mental notes, like a true anthropologist. I've started writing on my iPad Mini but it's a bit laborious and things keep happening, so I'll finish this on the computer when I get home, before I topple over. (If last time is anything to go by, I have about five hours post-chemo).

But worry not: you will then not hear from me for about week, so you can read this at your leisure.

For the moment, I am happily reclined, having discovered the put-your-feet-up button on my chair. I have been given the best vantage point from which to report proceedings. From where I am sitting, I can see both the nurses in their small domain full of equipment, and the other patients sitting in their chairs, facing each other but not talking to each other.

The unwritten rule seems to be that I can smile at other patients in an understanding and sisterly kind of way, but I can't start a conversation. This is a Serious Place.

A bagful of flushing fluid is dripping into my vein, clearing the path for the VIP. It has been put up by Agency Nurse, who is allocated to me for the afternoon.

I have figured out that this is how it works. There's a team of nurses, and they each have their allotted patients. It's their job to fetch you from the waiting room whenever there is a free reclining armchair in the VIP lounge. They then do everything for you that needs doing (insert the needle, locate my VIP, find another nurse to double-check that it is indeed my VIP and I that I am indeed me, sit down and slowly push two syringes of Red Poison and a syringe of Clear Poison into my vein, hang up the remaining drip bag full of another kind of Clear Poison, etc etc).

I was a bit surprised when the Agency Nurse popped into the waiting room for the third time, looking at me, before finally asking, "Are you waiting to wear the Cold Cap? No? Well, in that case, there is a chair free now. I just though you needed a chair near the Cold Cap and we don't have a free one of those."

The Cold Cap, as I suspect you won't know unless you've been in close contact with a chemo lounge yourself, is exactly that: a cold cap.

It's job is to prevent hair loss. It is shaped like an oversized swimming hat with chin straps. Attached to a machine that keeps it freezing cold, it must be worn for an hour before chemo starts, then during chemo, then for an hour afterwards. Not only does it make the session rather long, but it also makes it dreadfully uncomfortable. Women (it's mostly women) suffer terrible headaches for hours. Quite often, it doesn't do its job, so you're looking at headaches followed by hair loss. Who'd choose that? Even if it does work to a degree, many women give up on the Cold Cap in despair, halfway through their treatment. I take my hat off (well, my scarf) to anyone who sits through six cycles of chemo with a frozen head.

I have lost count of the many times I have been asked by nurses whether I want the Cold Cap. Some (like Agency Nurse) have simply assumed that I do. Some have been quite insistent on explaining the glorious benefits of a device that I know to rate low on success and high on discomfort. It feels somewhat tedious and annoying that a simple No thanks is not sufficient. I must explain, over and over again, that yes, I know I'll go bald, and no, I don't need you to try and prevent it.

Only when they have established that I am speaking my true mind, do the nurses then proceed to list the Cold Cap's disadvantages. You are right! they say. It's really terrible, wearing that thing, and it often doesn't work anyway. 

It reminds me of the breast care nurse and the surgeon, who listed the wonders of reconstructive options. Beautiful breasts can be made out of shoulder muscle, or stomach fat, or (seeing that I don't have enough of that) bum fat, or silicone. How could I refuse? Only when I did refuse, firmly, for the third time, did the nurse say to me that she thought I'd made the right choice. Reconstructive surgery really isn't the easy option, she said. It causes so many problems. You're better off without it. Why, then, extol its virtues? How can patients be anything but distressed and disappointed when it doesn't work out quite as jolly as it looks in the booklets' lovely photographs, accompanied by quotes of women who are invariably delighted? No leaflet quotes the one who says It was a nightmare and I wish I hadn't done it.

Today's Cold Cap question seemed odd, because why would I choose to wear one if I'm already bald? So far, I have left Denise with Matilda, and whilst I've made an effort with a scarf, it's not hard to guess that there is no hair underneath. Especially as I'm sitting in the chemo waiting room.

On my right side, my older daughter is sitting in the non-reclining chair, doing her knitting.

I have brought her along because it is very helpful to have someone who can run errands and keep me topped up with glass after glass of water (the more you drink, I've learned, the quicker the poisonous fluid is flushed out). It's also just rather nice and reassuring to have someone sit next to you. Looking around, I can see that most people have come in pairs.

I find that I don't need a companion with whom I can share my deepest fears or profound thoughts, and I certainly don't want someone chatty. Right now I am not interested in someone else's perspective on life, or in putting the world to rights, or even in discussing how I am. I'm in my own world, chemo world. I am busy observing everything and I find absolutely everything that happens in this place profoundly interesting.

I reckon that by the end of my treatment, I could be an Impostor Nurse in the VIP lounge and no-one would notice my lack of training. I know where the drugs are kept (locked fridge) and I know how to get the key (ask very loudly: "Who's got the keys?" and wait to see which colleague holds them up, either triumphantly or apologetically).

It is good to have someone to tut with when a nurse ignores her patient (I'm coming to that), or to share my delight when another nurse is particularly kind and helpful (I'm coming to that too). Furthermore, it is essential to have someone with whom you can ponder the whispered question: "Do you think that's a wig?" (The answer, usually, is yes. One of the patients was clearly wearing a wig called Hope, or perhaps it was Fantasy. But then the same names, I suppose, could be given to my head scarf.)

Having my older daughter with me turns out to have added value in the shape of Pig, who springs into action when I feel the cold fluid creeping all the way up into my arm.

"You need to keep the veins warm!" says Agency Nurse. "Let's see, what can we do..."

Daughter knows exactly what we can do. And very effective it is, too.

Pig to the rescue of the half-cold half-burning veins

On my left side, the Saviour Nurse (who looked after me last time) is putting a bag of fluid up for another patient.

I notice that Saviour Nurse looks at the patient, and not (much) at the fluid. She has introduced herself and constantly tells her patient what she is doing, what the plan is, why she is leaving the patient, when she will be back, what she will do when she is back. She asks patients how they are. Patients recognise her and talk to her, and she recognises them.

(She spotted me before I spotted her. "Back already? Goodness, three weeks go quickly. How have you been?")

In contrast, Agency Nurse has not introduced herself at all, nor has she told me that she is going to give me my chemo. I'm not sure she has looked at me, either. She arrives with a trolley full of dressings and syringes, puts my arm on a pillow, goes away again. I have no idea why, because she hasn't said anything.

("Are you alright?" Saviour Nurse asks me in passing, as I feel left stranded. I don't know. I am alright? Will I see my nurse again? "I'm fine!" I say with my brightest smile.)

I overhear Agency Nurse saying to her colleague, "Where are Irene Tuffrey's drugs? Have they not arrived?" Oh dear.

But suddenly there she is, she's back, trolley laden with the dreaded oversized syringes. She checks the drugs with her back turned to me. She starts to attach one of the red syringes to the line in my hand. It would be easier for her, I feel, if I was simply asleep (like one of the other patients, who is snoozing through the whole process, husband quietly at her side.)

I fear that having a nurse sit with me for half an hour whilst she pushes the Red Poison slowly into my vein, and not talk to her beyond Use my left arm please and Could I just go to the toilet before you put that bag up, would make me feel more like a piece of furniture than a person. Since I'm feeling fit as a fiddle and my brain is still working, and since I am interested to know what makes this nurse tick, I start asking her questions about herself. Fortunately, she is interested in that too.

I can't attribute her lack of engagement with patients to a lack of familiarity with the ward, because she tells me she has worked here regularly for a couple of years. And she is clearly skilled in administering VIP.

Agency Nurse, it turns out, likes working with machines more than she likes working with people.

She spent a decade in intensive care, where you send the patient to a different ward as soon as they can utter a word. She tried all sorts of other wards before discovering that on this Chemotherapy Day Unit, you don't have to wash patients or change soiled sheets.

"It's all nice and clean, this work," she says whilst looking approvingly at the Red Poison in my syringe and the drip stand with its stack of beeping boxes.

An elderly, unkempt looking man with a toothless grin and wonderfully twinkly eyes turns up and sits himself down opposite us (it looks like he's just here very briefly, for something involving needles). He catches our eye as often as he can, asks us how we are, smiles at us, puts his thumbs up, asks us how we are once again. My older daughter smiles back at him, and so do I.

"I'm fine!" I say. "How are you?" He reminds me of some of the people with intellectual disabilities I have accompanied to cancer wards, who have disregarded the rules of social interaction (and who had no idea that there were unwritten rules on behaviour in hospitals). They just wanted to make contact.

"Don't talk to him, otherwise there's no stopping him," whispers Agency Nurse, role-modelling How To Look Away for my benefit. "He comes every day. Don't worry, he won't stay long." (Shame. He seems a lovely and interesting chap.)

Fortunately for him, he has been allocated a friendly nurse who seems to like people very much. As he is sent on his way by the nurse ("You can go and see the doctor now), Twinkly Chap asks, "Don't you have to weigh me?" Clearly, weighing isn't on today's menu for him, but no matter. Friendly Nurse waves him onto the scales as if welcoming him in for a party, peers at the numbers and reports, "You can tell the doctor that you are 51 kilograms."

Twinkly Chap is blissfully unaware, I think, that to be valid in the NHS, the 51 kg would have to be recorded somewhere (although if my past experience is anything to go by, it might actually be safer just to ask the patient how much he weighs). He departs with a broad smile, twinkling away, looking forward to coming back tomorrow.

I can feel Agency Nurse's disapproval. In fact she shares her disapproval with me.

"He does that," she says of Friendly Nurse. "If that man is here around lunch time, he even gives him lunch. And he doesn't need to. That patient is only here for a short time, and it makes him stay longer."

So that's the difference. One nurse works here because she couldn't be with her father when he died of cancer, and she now wants to help other patients with cancer. The other works here because it's nice and technical, and doesn't involve too much hassle with patients.

I know which one I prefer. More than that: I know which one I need. Perhaps job applicants should be asked at interview why they want to work here, and only the ones that mention the word "patient" (or, better still, "people") should make it through.

I make the most of it, though, getting Agency Nurse to talk about what her work. As it turns out, she spends most of her days doing this very same job, giving people chemotherapy, but in private healthcare.

I quiz her on the differences between NHS chemo and private chemo.

 "All the patients have their own room," she says. (Which sounds pleasant, but actually, I rather like being squeezed into my corner from where I can observe everyone's treatment. And meet nice toothless men who lack a sense of boundaries. Next time I won't even bother bringing my book or my knitting.)

"The patients all see their consultant on the day of their treatment," she adds.

Now that would be nice. I've only seen my oncologist once. Since then, it's been the locum consultant, who is lovely, don't get me wrong. But it would have been helpful to understand why, after that first consultation lasting well over an hour in which she explained that she will be My Very Own Oncologist, this very same Own Oncologist doesn't acknowledge or greet us in the waiting rooms and seems to have handed us over to someone else. I keep going on about this kind of thing, but let me tell you, it matters. It matters hugely. It's bad enough being a patient without feeling that you are just a number.

"The other thing is, they give patients the latest drugs. The ones you read about in the paper, that would be good but they are too expensive. Actually, I've noticed that this hospital is excellent like that too. It's a teaching hospital, they do a lot of trials here." Ah. That's good then.

It prompts a discussion about the cost of drugs.

How much would today's lot of chemotherapy cost the NHS, for example?

"Oohh, quite a lot. Couple of thousand pounds."

What?? Is she making that up? Blimey, I forgive the NHS instantly for employing nurses (and the odd doctor) who treat me as a number. At least they treat me. I am incredibly lucky to live in this part of the world. How can I complain? The NHS is giving me ridiculously expensive drugs, because, it seems, I'm worth it.

"Even those extra anti-sickness pills you are getting," she says. "I was amazed to see that this hospital gives you those. They don't always prescribe them in the private hospitals, because they are so expensive. Well over £100 for just three pills. Some private hospitals ask the GP to prescribe them, and then the GP says they can't, because they cost too much."

Forgiveness is complete. When I told the doctor how I had been retching and feeling nauseous for a week, she concluded that without those three pills, I would have been vomiting profusely.

When Agency Nurse hands me my take-home medication, I find that I can start my very own pharmacy. There is not only an additional type of anti-sickness tablet, making it four in total, but also a set of five injections, to be given daily, starting in five days' time.

Apparently, my white blood cells were still rather lacking yesterday, hovering just below the acceptable level. Any lower, and they would have had to postpone today's VIP.

The injections are meant to get my bone marrow to improve performance on the white cell production line. Otherwise, there will be no hope that there are enough germ-busting cells left in three weeks' time, and I'll be a sitting duck for any bacteria that take a fancy to me.

"Can I do it myself?" I ask Agency Nurse.

"Yes, of course, no problem," she says.

(As I'm sitting at my desk typing this, I do wonder at the ease with which this task was handed to me. I'm all for patient empowerment, but Agency Nurse never established that I am a nurse myself, and didn't check whether I know how to inject myself. Perhaps she's read my notes? Is my job in my notes? But no, I'm sure she hasn't, or she would have known that Patient H4418813 doesn't need a Cold Cap.)

..................I am typing this up at home now. It is five hours post-chemo, and just like last time, I have a sudden urge to crawl into bed with a sick bowl. Chemo Taste is knocking at the back of my tongue, ready to enter and take up residence again. It's reassuring to know that things are vaguely predictable. I'm not looking forward to the coming week, but neither am I apprehensive or distressed. In fact it was much easier to enter the VIP lounge this time. I felt in control. I knew what was coming. I also knew that however bad this week will get, there is a Good Week waiting at the end of it. Let's hope that the good days, too, remain predictable.

All of a sudden, the last bag of fluid is packed away, the line is taken out of my hand, and Agency Nurse has left without a word.

I can see her doing other things that looks important, involving injections and paperwork. Is it for me? Or am I done?

I call out to her as she passes, "Ehhm, can I go home now?"

She doesn't hear me, so I try again. She turns. "Oh yes, you're done, you can go."

If there are any nurses among you reading this, let me tell you: it doesn't take much to stop your patient from feeling like a useless deflated balloon (or worse, an invisible one). As we gather our things, daughter and I, Saviour Nurse spots us and turns to us.

"Ooohh, good, you are finished today," she says with a smile. "We will see you again in three weeks' time. Good luck."

I thank her for everything. I'm afraid I cannot thank Agency Nurse, because I can't see her anywhere.

But let me thank you for sticking with me. I will see you in a week or sooessakjjjjjjjjjjjjjfa;sk

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