Wednesday, 15 October 2014

62. Hot chocolate on the cancer ward

My fellow patients on the cancer ward are a seasoned lot.

As I am wheeled into the four-bedded bay, they welcome me warmly into the sisterly fold. They nod and smile with knowing resignation, yes, we're all in this together.

"Hello, I'm Jenny*," says Jenny from across the room as she passes my bed with an empty cup. "We usually have hot chocolate before bed. Would you like some?"

Actually, I would. I haven't eaten since lunchtime. I can just about sit up to drink it before collapsing again. 

The relief of arriving here, into the relative calm with a soft and pillowed bed and competent nurses, is enormous.

All I want to do is sink into the mattress and not get up for several days (which, as it happens, is exactly what I did). I am happy for my husband to go home. There is a family to sort out. I think of my mother who, in her dying moments, didn't want me to stay because she worried about my children being without me.

"Did you have to wait long downstairs?" asks Jenny, ready to settle in for a good old chat around the hot chocolate. I can just about gather enough energy to form the words "No... sorry, but I'm really tired," feeling a bit rude, but what can you do? She understands.

In my feverish fog, I wonder about the strange uniforms nurses are wearing these days, but then I realise it's Tabiq*, the patient next to me, pressing the buttons on my drip stand to stop it beeping.

The drip stand is pressed into serious action. There are medicines and bag after bag of fluids - I stop counting at seven litres. I don't sleep much, kept awake by beeps and snores and fever and the hourly run to the toilet (courtesy of the 7+ litres of fluids) and the discomfort of having to keep my arm straight because they've put the line just in the crook of my elbow, and nurses turning the light on when someone needs them at 2am.

And by the newly arrived and quite severe bone pains. It feels like having a very bad flu, what with the aching hips and muscle pains. Except that now the bones in my feet are especially painful, which is very strange.

There's also Geraldine* opposite, who has someone ringing and ringing her mobile at 5.30am (why on earth??), just an hour or so before she sleeps through the annoying ring of her mobile phone alarm clock (nobody else does). Every morning, as it turns out.

The fevers last about two days, spiking up and down. The bone pains, too, last a couple of days.

On Sunday, I am again given the option of going home (despite temperatures still approaching 39 degrees), and again I choose to stay. I can hardly sit up (too exhausting) and am quite content to just lie here, making an Irene-shaped dent in the bed whilst things happen around me, without me.

The nurses, I notice, are kind.

On my post-lumpectomy/mastectomy ward, there were quite a few nurses who would come and do things to me without even looking at me. Here, I've met only one or two of those. They are usually the ones who move about in a resigned and bored-looking manner, taking blood pressures and temperatures without a word or a smile.

(Same in the Resus Room. All nurses and doctors there were excellent, introducing themselves clearly, explaining what they were doing and why - but you still get that one nurse who just comes in, looks at my notes, writes in them, fiddles with syringes, and leaves several minutes later without having said a word to us. Why become a nurse if you don't want to look at patients?)

Most nurses here, though, seem to enjoy their job and like being with patients.

Having said that, there is a quiet efficiency and competence running through looking after us that has just a touch of the conveyor belt about it. This strikes me when, during the bedside handover on my first morning, one of the day nurses turns to me with compassionate eyes and says, "It will get better, you know. It will."

I realise that this is the first time any of the endless doctors or nurses has acknowledged that this episode must have left me feeling miserable, frightened or despondent (in my case, all three). It almost makes me cry. For the first time, I feel acknowledged as a human being with a story.

Most nurses, kind and competent thought they are, have no idea who the patient in bed 16 is. Perhaps it doesn't matter... at least they're saving me from collapse, and that's the main thing.

She is right, though. It does get better.

By Monday, my temperature has dropped sufficiently for me to be able to read a book (although not enough to make me want to sit upright). Again, I am offered the chance to go home, and this time I take it. Even though my white blood count has dropped from absolutely fine on Saturday to well below normal today.

But then, with my drugs and discharge letter ready and my husband on his way, the doctor returns. "Sorry," she says, "but actually, we want you to stay in another night. Your own consultant is coming in tomorrow and we think you should see her."

Oh no. Can't I go home and come back in tomorrow to see her? No, it doesn't work like that, apparently. So I resign myself to spending another night among the snores and singing mobile phones, pondering the irony. First they want to send me home but I refuse; then I want to go home but they refuse.

By now, I am feeling much better and am even wandering about a little. When 80 year old Gladys* arrives in the bed vacated by Tabiq, looking tired and ill and puzzled about being admitted to hospital (but sporting a lovely haircut), I am the seasoned patient welcoming her warmly into the sisterly fold.

"Hello!" I say, reaching across the curtain. "I am Irene. Welcome to this room."

It is a bit like being very young again, travelling around, joining groups and communities where you sit around at midnight, getting to know people from all walks of life thrown together by a common desire to spend a few weeks marching for world peace. We stand around with our hot chocolate, chatting, Jenny and I.

"Never tried hot chocolate," says Gladys. "Perhaps I will."

She emerges from behind her curtain, looking at us with a mixture of fear and bravery in her face.

"I have taken off my wig!" she says.

So she has. This, apparently, is a big thing for her. She does not want people to know about her cancer ("they don't stop asking about it then, and I don't want that").This lovely retired school teacher, who lives on her own, had her first course of chemotherapy for cancer eight years ago. She was so insecure about her changed looks that she only went out after dark. And that was with her wig on.

"But now I saw you, and you look beautiful, and I thought, why not? You are so wonderful and smiling all the time!" (She clearly hasn't seen me when I came in here. And she hasn't seen my quiet and exhausted weep behind the curtains, in my husband's arms once he'd hopped onto the bed. No-one has seen that.)

But wow, Gladys. I have been puzzled before, and am puzzled again, about why I have seen no-one else with a bald head in either the VIP lounge or the cancer ward. I can't even imagine what it must be like to wear a wig in this place. My head is sweating so much, I have to keep wiping it dry. Even a scarf is bad news. But people seem to wear their wigs even when they sleep.

"I thought that too!" says Jenny, who is around my age. "I have been looking and looking at you. You are just beautiful. Isn't it wonderful that you can be so confident."

(There it is again, the You are beautiful thing. She must be joking. Have you seen that picture of me in the Resus Room?)

Jenny has only recently been diagnosed (she is in here for various procedures involving tubes and stents in unusual places). She has amazed me with her ability to keep going and chatting all day, receiving endless visitors and nurses teaching her how to manage her new tubing systems, and paying proper attention to her hair and make-up. Despite the new cancer diagnosis, recent surgery and rather a lot of pain. She is dreading the hair loss that awaits her when she starts her chemo.

I am deeply touched that my baldness has inspired gentle Gladys to free her own head. She, too, looks beautiful, but she doesn't believe me when I tell her this. And strangely, she looks much less ill without her hair. Wigs, good as they are, can just look too healthy and voluminous, highlighting your wan face.

By Tuesday morning, I am still exhausted but no longer incapacitated.

I have sourced the linen trolley and am making my bed. Then I give the nurse a hand with all the other beds in the room as well. I can't just sit there and watch her do it slowly by herself.

The rate this is going, they'd better let me go very soon. It won't be long before I'll be handing out pills and answering call bells. You need the toilet? No problem, let me help you. During my feverish nights, hearing that oh-so-familiar sound of the patient's bells was like being a sleep-deprived parent and hearing someone else's baby cry.  You don't think: I wish that baby would stop crying. You think: Poor parent, but ha! it's not mine to deal with.

But by now, I am remembering why I chose to be a nurse; and of all the hospital wards, this is probably the one where I'd want to work. The patients and families are interesting. So many stories I'd want to listen to.

It does make it hard to be a patient myself, unless (like those recent feverish days or the days following my surgery) I feel very ill. I can't help noting what happens to my fellow patients. I hear the nurse tell Geraldine what pills she needs to take, and it tells me what's wrong with her.

I hear the doctor explain things to Tabiq, and it is clear to me that she doesn't understand a word of it.

More difficult: when my consultant finally comes to see me, and then moves on to Gladys, I understand from the brief explanations behind the curtains that Gladys is really rather ill indeed. I know exactly what is wrong with her, and what her outlook is, but I don't think Gladys does. She doesn't speak Consultant Language, however clear and easy the consultant tries to make her words. I also rather suspect she is blocking out the truth about her cancer.

It's not only people with intellectual disabilities who need help in processing bad news. Perhaps I should re-write my book for the general population?

But that's enough for now.

My consultant doesn't seem overly concerned about my weekend collapse and sends me home.

Will this change the chemo plan? She doesn't know yet, not without looking at all my notes properly. They might decide to change it to weekly chemotherapy, which isn't quite such a large wack in one go. Wait and see until we meet in clinic, pre-chemo, as planned.

In the meantime, Tuesday's blood results have come back. There are now so very few white blood cells left that I should probably start giving them names and introduce them to each other with the suggestion to go forth and multiply. Otherwise, nothing stands between me and even the friendliest of bugs. In fact, those friendly bugs that live in your mouth are already taking advantage, celebrating with a throat full of thrush.

Never mind: just be careful, phone us straight away when you have a temperature again, etc etc.

I hug my fellow patients goodbye, exchange email addressed with Jenny, thank the nurses and leave. I am so, so very grateful to the NHS for coming to my rescue.

Lovely to be home. Wonderful to see the children and talk about school days. Bliss to sink into a hot bath. It wouldn't surprise me if you've heard it, my loud Meg Ryan-esque groans of satisfaction as I sank into my own warm bed underneath my own fluffy duvet. 

Who needs a five star hotel? Home, that's what we need.

*Not their real names

Ready to go home...

...and finally, resting where it's cosy and comfy

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