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

Tuesday, 26 August 2014

40. Hallelujah: my hair has gone!

Never a dull moment. Take yesterday, for example.

Unexpectedly, yesterday turned out to be Head Shaving Day.

Let's start with the end result, so you don't have to scroll to the bottom trying to find the picture that answers the What does she look like now? question.

Yes, I'm afraid that's my hair is Owl wearing. Almost all of it.

 "I think I'll shave it all off the day after tomorrow," I said to my husband as we woke up.

"After I've had the next lot of chemo. I can't be doing with feeling rotten and having to cope with my hair falling out all over the place."

I was beginning to get fed up. Having abandoned the Easter Egg Cap after one night (too hot), my pillow was covered in hair. Persistent stuff, hair. Even after hoovering, shaking and washing the sheets, it clung on for dear life.

Shaving it off after chemo was Plan B. I'd already abandoned Plan A several days ago (shave it all off at the first sign of hair loss; possibly ask my lovely hairdresser to do it).

When I thought about it properly, I decided that both Plan A and Plan B should involve getting my best friend to come over and do the shaving. She, I reasoned, was eminently qualified, not only on account of having been my Best Friend for over three decades (moral support etc), but also because she kept her own head clean-shaven for the 17 years when she was a buddhist nun. If anyone knew how to shave a head, it was her.

It was a fine plan, until I stood in the shower and tried to wash my remaining hair.

It had been coming out in manageable quantities, perhaps 20 strands if I really tried to grab a handful. Then this happened, every time I put my hand to my head.

Oh dear...
It occurred to me that this is how I had imaged chemo-induced hair loss. Fistfuls of it. Let me tell you, that's what it was. I had to stop the shower five times for drain maintenance, as I kept finding myself ankle-deep in water that couldn't find its way past the hairy clumps. And every time I thought Let me get out of the shower, that's quite enough I needed to rinse off just a bit more to get the hair off my arms/chest/legs (told you, persistent stuff), only to find more and more head hair making its way south. I might as well have started painting the Forth Bridge.

So it was on to Plan C: Get It Off Now, Don't Care Who, Don't Care How!

We waited until the afternoon. Partly because I wanted to skype my younger daughter ("If you really want to be there," I told her, "I'll hang on until you are home tomorrow evening" - but she said it was OK to watch the before/during/after look by virtual means).

Trying to keep my hair on
Partly because we had planned to go out for lunch.

"We can cancel it," my husband said, but that seemed too much of a concession to cancer. Now that I am beginning to feel better, I've had quite enough of putting my life on hold.

The only concession I made was to wrap a scarf round my head, to prevent hair in my dish (and everyone else's dish, the rate it was going).

Returning home, it was time to answer the Who and How question. My best friend was too far away (Plans A and B had involved a certain amount of, well, planning. Plan C was rather lacking in the Planning Department).

In any case, we had already decided that putting a razor to my head, as she used to do, was not such a bright plan after all. Newly shaven heads are rather sensitive.

I remember the trouble she had when hers was shaven for the first time (not helped by her failure to wear a hat when first out in the sun). Apart from the minor scrapes, there was a bizarre oozing, like sticky yellow tree sap. No thank you. Millimeter it: that was the general consensus.

My best friend's ordination ceremony in 1988, having her head shaven for the first time

 Then my son came up with an innocent little question.

"Why don't you just pull it out?"

Pull it out?!

"Well, yes. Because if you cut it really really short, or shave it, it's still there, isn't it. It will still have to fall out, whatever is left of the roots."

After we had stopped laughing (plucked chickens sprang to mind), I began to wonder whether he had a point. In fact, I struggled to find anything wrong with his plan at. Tiny millimeter-long hair on the pillow was still, whatever way you looked at it, hair on the pillow. The fewer hairs, the better, no?

By good fortune, my younger daughter's godmother in Amsterdam has not only been a champion friend since our nursing training in the 1980s, but also a cancer nurse for all that time. She has seen thousands of patients through chemotherapy. So when I spoke to my younger daughter on the phone, I also spoke to my champion friend, with whom she is staying.

"Well," said the champion friend. "I have to say, I have never, ever heard of a patient going bald by pulling. But I do find that patients who millimeter their head in anticipation of hair loss often complain about their head being painful when you touch it. The hair roots are really sensitive."

I knew exactly what she meant. My hair roots had indeed been painful every time my hair moved, whether by stroking, by pulling hats on and off, or even just by taking off my T-shirt. If you've ever had long hair, you'll know what that is like. You've had it in a tight pony-tail all day long, and when you finally undo it and force you lovely locks in a new direction, there is a bit of a pulling sensation. Magnify that feeling, and there you go: the cancer patient effect.

So that settled it.

Pulling out as much hair as possible, followed by my husband putting the beard trimmer to the remaining strands - that was Plan C.

The champion friend, who is the most practical person I know, helpfully suggested that a wet hand would be best. Hair sticks to wet hands.

Back I went into the shower, this time not bothering to keep my arms/chest/legs hair-free. Soon, I resembled a furry bear. It was the most bizarre shower I have ever had, pulling out fistful after fistful of hair. It simply came away in my hands. By the time I had finished, there was enough of it to produce a wig, if not for me, then at least for Owl.

My hair (almost) down the drain
Was it distressing, you may ask? Strangely not. It felt liberating. That hair had become such a nuisance. More than that: it was a once-in-a-lifetime experience that not many people will ever have (and if the champion friend is anything to go by, very few people in my position choose to do it). So rather than going Oh no! Look at this!, I found myself going Oh yes! Wow! Look at this!

Unfortunately for them, my husband/son/daughter missed out on these excitements. I did offer them the opportunity to give me a helping hand, but they declined with determination. Can't think why. Who else can say that they've plucked someone clean?

There was, however, still enough hair left for the beard trimmer, so there was another chance for them to get involved - I couldn't do that on my own. And this was definitely not a look worth keeping. It was like having aged 20 years in the space of 20 minutes.

The post-plucking look
My son isn't the hairdressing type, so he was out. My older daughter remained too horrified at the thought of me going bald, so she also counted herself out.

My husband, thankfully, was ready and willing. In fact he'd got out his old beard trimmer days ago, just in case. "Old" is the right word: it's well over a decade since he had a beard. In fact he'd been taking the thing apart repeatedly, cleaning and blowing and hoping for the best.

No good. My hair was just too long. The old beard trimmer didn't like it, and told us so. My poor husband had to keep stopping for more dismantling/cleaning/blowing. He had the worried look of a man who is picturing his wife with an unfashionable half-shaven look, knowing that he has himself to blame.

Oh dear. Will it work? Won't it work?
Daughter was called for, ignoring her reluctance. What was needed, clearly, was Very Short Hair in order to pacify the old beard trimmer.

I can't even call it Plan D. By this stage, we were improvising. There was no Plan.

Luckily, my older daughter is a positive and cheerful kind of person. Once she realised that this was an emergency, she set to the task with gusto.

She seemed to agree with me, wordlessly, that there was no point in being miserable about the inevitable. Why not enjoy this unique chance at playing hairdresser?

So there we were, getting out the portable radio (although we drew the line at trying to find realistic hairdresser music. It was Classic FM instead).

"Been anywhere nice on holiday lately?" we asked each other.

It did the trick. After she had finished, the old beard trimmer grudgingly did its job. And I had my third shower of the day.

Believe me: I felt elated.

Don't ask me why. Perhaps it was sheer relief at being so gloriously released from my Hairy Situation. It was six days since I first noticed that my hair was loosening. It had been OK, but it was enough. I had clearly needed that period of time to make the mental transition towards being bald.

(I am so glad I had that pixie cut. It would have been a nightmare to go through all this with anything but short hair. It also helped me to adapt to the shorter-shorter-gone look in the mirror, to the extent that I now look at pictures of myself pre-pixie-cut and find my abundance of hair almost unreal.)

My happy shower was also, I think, due to relief that I had finally crossed this hurdle - and to my pleasant surprise, I found that I really didn't mind it. From here, the only way is up. I thought I was going to cry with the release of emotion, but what came out was not sobbing but singing. Trouble was, I couldn't find a song to suit the occasion.

Then, just as I stepped out of the shower feeling beautifully clean and smooth, Handel's Hallelujah Chorus burst forth from the radio. As I turned up the sound as high as it would go and sang along, I realised that this was the perfect song to match my mood. Hallelujah.

Later, I found another reason for my unexpected happiness. I stuck my head round my son's bedroom door, to show him the new look.

"What?" he said, in that way only teenagers can manage.

"Look," I said, pointing at my head.

"Well yes I know, but what is it?" he repeated, in a What do you want sort of voice. Why disturb him if I have nothing to ask him and nothing of interest to say?

And that, I thought with a jolt, is exactly it. He didn't find my shaven head note-worthy, because I had already told him about it, and it didn't matter. It didn't stop him seeing Me, his mother.

The reason I am happy is because when I look in the mirror, I can see it too. Me. I'm still the same. 

Moreover, I have got used to the idea of being (and now looking like) a cancer patient. I think my soul has caught up. That is cause for happiness, indeed.

Just for the record: I really did pluck most of myself clean. The small cluster of swept-up hair on the bathroom floor paled into insignificance compared to the heap around the plughole.

Now, back to Owl. Might a wig, made of my hair, be good enough for the NHS catalogue? Is there anything similar? I went to the online version. The closest one I found was Elegance.

An NHS wig called Elegance

But we are not in need of Elegance. As I went to bed last night, I suddenly thought of the perfect name for my departed hair.


Owl wearing Hallelujah

Sunday, 24 August 2014

39. An owl with 18 knees

Here's another Owl Story from the archives, to distract from my depleting hair supply. This goes right back to the days and weeks following my cancer diagnosis.

(If you haven't read about Owl, you'd better do that first; this post will make no sense otherwise. Here it is.)

One of my friends was completely taken by the possibility of having an alter ego to help you through life.

She had a knee replacement last year and was just weeks away from having her second knee similarly upgraded. She latched on immediately to my suggestion that she might need an owl of her own for her impending surgery.

"I’d love an owl," she said, before adding that unlike my Owl (who has the job of being the meek and helpless patient that I am struggling to be) hers would need to be the strong, in-control one.

"I am definitely shaky about this operation,” she explained. “I know it’s going to be painful and that I’ll take time to recover, even if the end result is well worth it. But because my other knee operation went really well, I don’t find people can relate to my reluctance.”

I sat up until well after midnight sewing her a plump and solid owl, weighted so he won’t topple over (unlike mine, who is so light that, true to character, he is floored by the merest breeze).

My younger daughter observed that an owl was no good for my dodgy-knee-friend, because owls don’t have knees. It prompted me to sew on 18 small knee-like feathers. I also gave him feet. My friend has struggled with her walking for years and years.

She was delighted.

Knee Owl with my own Owl, pre-surgery
Knee Owl proved too heavy to lug to hospital appointments, but she reported that he has cheered her on from afar. She has been more assertive in hospital appointments. His help has gone beyond the strictly medical. Once, he stopped her from buying a bar of chocolate during a must-have-chocolate-because-I am-stressed moment. You don’t need chocolate! You are stronger than this! Knee Owl apparently whispered into her brain. (And he wasn't even with her at the time.) Success. She stayed chocolate-free.

Talk about alter egos.
Who needs expensive therapies/assertiveness training/psychologists when some left-over fabric and a couple of old buttons will suffice?

My older daughter loved Knee Owl.

“Can’t you make me one?” she asked.

"I will,” I said, a bit nonplussed because she has already made several equally lovely owls herself, so why ask me? “What kind would you like?”

“I don’t know,” she said. “Maybe I can invent something wrong with me?”

It turned out that she didn’t just want any owl, she wanted one that could help with a particular health problem.

“Don’t worry,” I said. “If you ever get ill, you’ll be fine. You have Pig.”

It set me thinking, though. Could the idea of Owl reach beyond cancer or knee replacements?

The thought hasn't left me. I've kept an eye out in hospital and it seems that I am not the only one carrying an animal around. Once, I stopped a frail-looking elderly woman who was being pushed along the corridor in a wheelchair, clutching a monkey. I couldn't help it. I had to introduce Monkey to Owl, to the bemusement of both the woman and her nurse.

A couple of weeks ago, one of my colleagues sent me an email with an intriguing subject line.

The Owl and the Pussy Cat

"When I was seriously ill a few years ago with post-operative disasters, I had Pussy Cat, who was given to me by my youngest child (then 7 years old). This was a clever choice because cats have nine lives, don't they? In the haze and confusion of life-threatening illness (not cancer) I felt the warmth and weight of that little grey tabby cat on my feet and often joined in his cat conversation. Sometimes he glowed orange and grew into a powerful tiger. At other times he multiplied into a hundred playful kittens, pawing and nipping at me to keep me alive. Pussy Cat now sits on a shelf in the spare room but his creative spirit still emerges from within me at times of crisis."

Well now, here's clearly a new career for someone. Better be careful. Before I know it, I’ll be running a bespoke Owl Fitting Clinic just along from Clinic 2, with orders coming in from all quarters.

To do it properly, I'd have to find out what an owl with diabetes looks like, or with chronic heart failure, or with dementia. (Any ideas?)

But more importantly,  I’d have to find out who the patient is, and not just what is wrong with him. And if a patient came along with a daughter and a Bear, I'd give Bear a little owl too.

I would definitely have to think of something better than Clinic 3 though. Perhaps something like...

Life's A Hoot.
Owl You Need Is Love.
Everything Will Be Owl Right.

Or Be Whoooo You Are. Isn't that the crux of it?

Saturday, 23 August 2014

38. Gone with the Wind

Another post about my hairy situation. I did warn you.

"It's definitely thinning on the top," my husband observed this morning. "Not like mine, with a bald patch, but I can see your skin."

By this evening, I could see it too. Not just the receding hair line, but the bits of pink glowing mischievously in the background. And when I swipe my hand though my hair, I am taken aback by its wispiness.

Hair yesterday, gone today
It's coming out in small handfuls. My daughters are horrified. (Men, it seems, are less bothered by appearances).

"Don't do it, mum!" my older daughter says in alarm every time she sees me doing the let's-see-how-much-I-can-pull-out-this-time thing.

"Noooo, I don't want to see it!" my younger daughter said when I tried to show her the changing landscape of my head via Skype. (She has gone to stay with her godmother in Amsterdam).

For months, I have asserted that I would shave it all off as soon as the first strands made a bid for freedom. I am now well past the first-strand-point, however. My hair is quite literally going down the drain, so it looks as if I have changed my mind.

I reserve the right to change my mind about things.

Perhaps it is the precedent set by Denise. Denise changed me from someone who was convinced she would Never Wear A Wig to someone who Might Actually Wear A Wig Sometimes (especially after several friends, having read my previous blog post, were rather supportive of Denise - thank you kindly. One of them, who saw a photograph of Denise and me on Facebook, didn't even spot her - she commented that I am looking good in my new coat and will surely look good in a wig too).

But back to my own hair.

The reasons for not wishing to shave quite yet, I have decided, are multifold.

One: An appointment at Hair Today and an appointment at Gone Today is just too much in one week. Perhaps it's better to go bald gradually, rather than all at once.

Two: Moulting like a shaggy dog is not as much of a housekeeping problem as I'd thought. As long as I remember to wear a hat when cooking (as I discovered to my cost at dinner time). I've also taken to wearing a garment called a Chemo Sleeping Cap at night, to avoid hairs-on-the-pillow-syndrome.

The Chemo Sleep Cap
(not out of place in a flower power swimming pool)
(I ordered this rather bizarre item of clothing in anticipation. I've been told that my head will get cold at night. A fashion statement it is most certainly not, unless the Easter Egg Look has made a come-back.)

Three: I don't actually mind the thinning hair. In fact it seems as if I don't really mind the impending baldness any more either (although I reserve the right to change my mind about that too). Rather then being distressed, I am intrigued by the process.

I'm not sure what I expected, but I think my imagination involved tufts coming out in one go, leaving me with a patchwork of bald spots. In reality, there is the aforementioned receding hairline and thinning process.

I am like a schoolchild whose tongue is drawn like a magnet to the new gap in her mouth. My fingers keep plucking the different hairy bits, just to check. What is going, what is not?

For the record: eyebrows and eyelashes are reasonably firmly attached. Legs are beginning to give in, very reluctantly (I've grown my leg hair for scientific reasons. As I said, I'm intrigued.) No sign of surrender on my arms. Will they too end up smooth as a baby's bottom? We'll see.

I think I'll leave the shaving until it starts to look ridiculous.

Which could be very soon, the rate things are going.

The hat meant to prevent Dandelion Syndrome

In the meantime, I'll just wear a hat when I'm going for breezy walks, lest I resemble a dandelion on a blustery hill top, its seed heads gone with the wind.

Thursday, 21 August 2014

37. Wish You Were Hair

The Wigs Clinic, or rather Wish You Were Hair, is in Clinic 2, just along from the Fracture Clinic and opposite the Sleep Unit. We were surrounded by people with their arm or leg in a plaster cast. Having got to the waiting room in a rather giggly mood, we were the most lively and bouncy of the bunch. I felt a bit of a fraud, as everyone else looked like a proper patient.

Then I remembered that I was probably the most genuine patient of the lot. You just can't tell. I'd done the make-up thing and made sure I wore something vaguely glamorous to go with the wig.

The Wigs Clinic was more Store Cupboard than Salon. By the time all seven of us had squeezed into the tiny consulting room, it was standing room only, what with myself, my two daughters, Bear, Pig, Owl, my stylish and sensitive friend, Wig Lady and Wig Lady's Assistant. Perhaps it should have been named Neither Hair Nor There Nor Chair, but I suppose that wouldn't fit onto the blue NHS sign.

I looked around for a door into the Wig Show Room, but it transpired that I was holding the show room in my hands.

"Here you are," said Wig Lady without much (in fact, without any) introduction, handing me a glossy magazine and sitting business-like at her computer, as if ready to type in my wig-of-choice within the next five minutes. "You choose your style first. Then we see if it fits you. Then you choose your colour."

She gestured broadly to the stack of boxes on the table behind me, topped by a card with dangly strands of hair in different shades.

"If it's here, you can take it straight home. Otherwise you can collect it on the 10th of September." (Oh no. Not the 10th of September. My hair is falling out as we speak.)

"Oh, right," I said, rather alarmed at the Vogue-style photographs of young women with long blonde hair. They didn't seem to do grey, or wrinkles, or worries. They didn't seem to do me. "OK then."

I started to giggle again, showing my daughters the possibilities opened up to me by wigs with names like Amaze and Enhance and Celebration.

The girls were rather keen on Pixie, because that's the name of our cat. Hahaha.

Fortunately, my stylish and sensitive friend could see the panic beneath my laughter and knew that I needed neither Captivate nor Everlasting.

(Please. Not Everlasting. Perhaps I should try on Calm? Or Believe?)

"Let's look for the shorter ones," she said gently. "How about this one?" It was Desire.

As soon as Desire was on my head, both my laughter and the underlying panic exploded.

"This is ridiculous!" I said. "I can't wear that. I can NOT wear a wig."

Desire? Pehaps not.

As I sat there in front of the mirror, tutting, the Wig Lady's assistant wordlessly combed and combed until I resembled someone presentable. Problem was, Desire was someone else, not me.

My stylish and sensitive friend tried to put it into sensitive words: "Perhaps this one is a bit too... well... I don't mean this badly... but young looking. How about something even shorter? And more like your own  hair colour?"

I agreed. Most of these wigs, it seemed, are made to make you look like a better version of yourself. As if you are trying too hard. I don't want a better version of myself. I certainly don't want Venture.

Cancer treatment is enough of a venture in itself, without my hair adding to it.

The Wig Lady's assistant quietly put Desire away and produced Denise, found in the catalogue by my stylish and sensitive friend.

Denise. OK then, I'll have this one.
Ah, well, Denise.

Perhaps it was the undesirability of Desire that made me receptive to anything vaguely suitable. As the Wig Lady's Assistant started her wordless combing again, I began to feel that this might, just might, look like me. The more she combed, the more my six-strong team of supporters agreed.

"It looks good, mum," my older daughter said. "You look like you."

So, to my surprise, I was done and dusted in less than half an hour, with a wig that happened to be available in my very own colour, so I could simply take it home. It was almost disappointing.

In fact I could see the disappointment in Bear's eyes. He had looked forward to trying on an interesting range of wigs. He had even dressed for the occasion, choosing his best jumper to match his anticipated new hair-do.

"Ehhmmm...." I asked on his behalf, "might it be possible for Bear to see what he looks like in a wig? He was really hoping..."

"I don't think so," Wig Lady said kindly but sternly. "His head is too big."

Oh dear. Too much Brain Fluff. My younger daughter looked crestfallen. Her bear had talked about trying on wigs for days. We'd just have to do lots of wig wearing at home, using the dressing-up box. (We did. See pictures at the end of this post.)

"Not even perching on top?" I persisted. "No? How about Owl, perhaps?"

I started to explain that Owl had gone through all my cancer excursions with me, being photographed along the way. By the time I had finished, the quiet Wig Lady's Assistant had produced a lovely long-haired wig, matching Bear's own fur, and put it on his head. Now that's what I call patient-centred care. It made all the difference to our day.

(Afterwards, as we sat in the hospital canteen talking about the difference between Wig Lady and Wig Lady's Assistant, my younger daughter observed: "I think Wig Lady enjoyed it." "What makes you think that?" I asked. My younger daughter answered, "She smiled at Bear."

Good for Bear, transforming Wig Lady's experience. And just for the record: you cannot fool a child.)

So here I am, still with my own thinning hair. I've parked Denise with Matilda, our resident mannequin (don't ask, it's a long story) - but I might actually borrow it off her from time to time.

Matilda wearing my wig
"Do I pay for this?" I asked Wig Lady.

"No," she said. "It's part of your treatment." Amazing.

"I thought of another one," my stylish and sensitive friend said as we left Wish You Were Hair and headed for the canteen.

"Wigwam. We Put The Wam Into Your Wig."

I had to rush to the ladies. I couldn't even blame the cancer for the disastrous effects of sudden mirth. It was a case of pelvic floor failure.

I've got Denise. Bear, it seems, has got Flirty. Owl has definitely got Cover Girl.
(I am not making these up. There really are NHS wigs with such names.)

Looks like Bear, Pig and Owl have been to Wigwam... 

...and yes, Pig is wearing mine. It clearly has Rock Star potential.