Wednesday, 29 October 2014

67. More chemo... Pushing on regardless

Back in the VIP lounge, hooked up to the now familiar drip stand, ready for the full wack of chemo.

I took this picture of the VIP lounge after-hours, when I was hospitalised. Empty of patients, I can now show you the whole room. My sister-in-law, who came to pick me up, was amazed. "I'd imagined it to be a bit more private!"
But I quite like the squashed-close-together effect. It makes it more interesting.


I recruited my son this time to be my personal assistant, it being the half term holidays. Following hot on the heels of a week with a German family on a school language trip, I reckon he'll have had his fill of Cultural Experiences. I've shown him round the ward ("This is where I was admitted," and - crucially - "This is where you make the hot chocolate", which is mostly what he's here for). Cancerland probably has more of an alien culture than Deutschland. Beer beats NHS hot chocolate, I suspect.

I've urged my nurse to slow he drip right down, remembering last time's collapse, so we'll be here for several hours. My son has wisely brought his homework and his headphones and a gadget with a film on it. 

Unfortunately, the nurse has put the drip in the back of my left hand. Every time I type and flex my fingers, the machine beeps in protest, so it's slow one-handed typing.

I told my consultant what some doctors had said about the cause of my temperatures.

In absence of a clear source of infection, they thought, it was probably simply a way of my body protesting against the invasion of Docetaxel (the vicious chemo drug). The consultant batted this theory away as if it was a noisy but useless insect.

"I have never heard of that," she said in a What on earth do they teach the doctors these days kind of voice. "You must just have had one of the more obscure viruses that we haven't tested you for."

This is the problem with an imprecise art like chemotherapy. Or with any kind of medical intervention, come to think of it. Doctors and nurses contradict each other, sending me to search the archives of the British Medical Journal and The Lancet for the research evidence. But this time, I took the consultant's word for it.

So I agreed to her suggestion that we push on as planned. She did offer to reduce the dose by 10 or 20%.

Oh dear... Ten minutes into the Docetaxel, and suddenly I can't breathe. Head swimming. Excuse me a minute...

90 minutes later:
Back again. It was a mild reaction this time, just shortness of breath and a whoozy brain. I've had extra drugs, making me rather sleepy, but never mind, I've got "Bed" booked in for the next fortnight. Aromatherapy Man has been round to work his magic, adding another soporific layer. Now the Docetaxel is back on, and I'm determined to finish writing this blogpost.

"And the rationale for reducing the dose of chemo would be...?" my husband wanted to know.

Well, there wasn't really one. Not a physical one, anyway. But this particular chemo drug, she explained, is renowned for knocking people out completely. I have this image of myself, running, walking and then crawling to the finishing line, flattened by each round of chemo, and every time I scramble back to my feet I get another wack over the head, sending me face down into the mud again. "Getting there! Only two more!" people tell me encouragingly, but at the face-down times that seems an impossibly long way to go. Don't tell me... Two full rounds, almost two more months of eating mud. Help.

"I saw a patient this morning," the consultant went on, "who was so knocked out by her first dose of Docetaxel... I thought, if I give her the same dose again, I won't be able to get the last ones in."  

"She won't come back", was the implication.

And who could blame her? Why willingly come back for more, if it makes you so very ill? Sometimes, the misery just outweighs the benefits. I also think of the many people who have little grasp of possible benefits hiding far into the future, people with dementia or intellectual disabilities or simply live-for-today attitudes. The mind boggles. Even I, with all my professional expertise and quiet fortitude, have to brace myself at the sight of the VIP lounge. Don't go in there! my body warns, sending me a complimentary wave of nausea just to convince me. They do nasty things to you!

But here I am, and it's not just because the consultant has convinced me that my body will cope. It is also because I look back through the distorting tunnel of time, and I think, Well, it wasn't too bad, really. I've just got back onto my feet and I can see the finishing line myself now. Who said again that I had only two more to go? Thank you! Now there's an encouraging thought!

Back me up here. It wasn't that bad, was it? Fevers and hospitals aside, I feel better able to cope with tiredness-beyond-tiredness and bone pains than with the nausea and chemo tongue combo. And, I reported to the consultant with a certain degree of relieved triumph, I didn't get the numb fingers thing! Hallelujah!

"No," she dropped in casually, "you don't usually get that until the second time." Oh. There I was, counting my chickens, or, as they say in Holland, selling the hide before I shot the bear.

My bag of Docetaxel has almost emptied itself into my veins. I'll go home soon to an empty diary and a beckoning bed. I'm almost, almost looking forward to it. But this time, I've got my hospital bag ready just in case.

Goodnight and see you in a while.

Let's just hope that at the end of this chemo cycle, I'll have some hatched chickens and a bear hide to sell.








Sunday, 26 October 2014

66. Another day, another woman with breast cancer

I hear on the grapevine that a fellow choir member has just been diagnosed with breast cancer.

We have sung together for, oh, about 18 years, but I haven't been able to go to rehearsals for months (even in good weeks, I just haven't got enough puff these days), so I haven't seen her for a while.

It occurs to me that, even though I am now a Breast Cancer Patient, I have absolutely no idea what her experience is like for her. We are different people, with different lives and different coping styles. I have also no idea what her story is, and I realise that I want to know the details. All of them.

How did she find out? What kind of cancer? How big? What grade? And - crucially - what is it like for her, to go from Being Fine to Being A Cancer Patient in the time it takes to sit in a doctor's office? The grapevine news didn't stretch that far.

I ring her at once.

This choir friend is, I suspect, not quite as promiscuous with her cancer story as I have been, so I'm not sure how much she welcomes talking about it. But if I have learnt one thing, it is this: not getting in touch is worse than getting in touch (and keeping it brief if needs be).

As it happens, we talk and talk. Nothing like a spot of breast cancer to create a bond.

I still cannot imagine what having breast cancer is like for someone else, but I can relate to the whole hospital rigmarole of being diagnosed.

Unlike mine, Choir Friend's cancer was picked up through a mammogram, part of the routine 3-yearly screening process. I discovered my tiny lump myself and took it to the GP for inspection. She sent me to the one-stop-shop at the hospital (doctor's assessment, mammogram, ultrasound, biopsy), where my cancer turned out to be invisible on the mammogram. It jumped out at us on the ultrasound. They then stuck a needle into it to extract a few cells for the lab.

My cancer diagnosis came a week later, when the surgeon confirmed that it was indeed cancer. In a way, I already knew. My biggest shock was seeing that image on the ultrasound, which didn't look anything like the neatly formed cyst I had expected.

Once diagnosed, I had to wait to have an MRI scan, to see if the cancer had gone anywhere else in my breast. (It hadn't.) Based on those images, the surgeon took the decision that what I needed was a lumpectomy, not a mastectomy. (Hurray, I thought at the time. Alas, events involving microscopes sent me back to the operating table for a mastectomy after all.)

Choir Friend has been to the one-stop-shop, had the biopsy, got the cancer diagnosis, is about to set off for her MRI scan, and will be given The Verdict in due course.

"It's the waiting!" she laments. "Surely there could be a way of putting dates in the diary?"

Ah, yes, the waiting. I remember that. First thing I did, when I suspected that I might have cancer (at the end of the one-stop-shop, a week before my diagnosis), was put my diary onto the surgeon's desk. If it turns out to be cancer, I asked, what happens next? I wanted to know whether and when they would operate. I had no idea. Would I have to stay in hospital straight away? Should I cancel my engagements for the weeks ahead? Look, I'm meant to give a talk next week. Can I?

Don't worry, said the surgeon. Whatever it turns out to be, we will sort it out. It's only small.

Well, yes, I could see that, but what does Sorting it out involve? I had to ask specifically, because I really, really wanted to know these things. I established there and then that surgery wouldn't be until three or four weeks later. (All this, remember, before I was even given my cancer diagnosis.)

This uncertainty was one of the worst things of waiting for Diagnosis Day. So bad, in fact, that during that terrible week of waiting, I arranged to meet up with the hospital's Lead Cancer Nurse (whom I knew, as she had taken part in some of my research). I asked her what I could expect if (a) it was cancer, or (b) it wasn't cancer. She set it all out very clearly over a cup of tea, the entire range of possibilities, and that was one of the most helpful meetings I've had during my career as a cancer patient.

It is good, talking to Choir Friend. Because I can see that, although I do indeed have no idea what her cancer road looks like from her perspective, I am now acutely aware that there is such a thing as a Cancer Road.

(With apologies to the many people who detest words like Road and Journey in the belief that those words should be reserved for a trip to Hull or a holiday in Hawaii. It's just a matter of vocabulary, really. How to find the words to describe what is hard to describe?)

I look back over my shoulder and there they are, receding into the distance, the various stops on my road.

Appointments, scans, surgery, waiting rooms. Medical decisions about surgery, chemotherapy, radiotherapy. (That last one is still to come. Haven't got a date in my diary yet, not even for the so-called "radiotherapy discussion". Does the end of November spell the end of my treatment, or do I carry on into the new year, with daily trips to the radiotherapy rooms? No idea. I've got used, sort of, to not having things in the diary - but it would be better, really, if they were.)

Decisions... Have my planned mastectomy, or stay with my dying mother? To reconstruct or not to reconstruct? 

"Why did you choose not to have a reconstruction?" asks Choir Friend. It's an excellent question and the answer could take up an entire blog post. I talk her through my decision, acknowledging how deeply personal such things are. I am in no position to give anyone advice on such matters.

Family and friends and acquaintances and colleagues, all needing to be told (or do they?). Going back to work, or not? Choir Friend has very recently retired. Does that make it easier or harder?

Shifts in perception. Turning from the one who gives... into the one who receives. Turning from the always-healthy... into the seasoned patient. From cycling to the pool for a 50 length swim, and then cycling on to a full day's work, and then cycling home to cook the dinner before setting off to choir practice... to carefully planning a 15 minute walk around the block because it will take the rest of the day to recover.

I hope Choir Friend will be spared some of these road stops. A lumpectomy followed by a couple of weeks' radiotherapy (as was my initial treatment plan) sounds much more manageable.

But that still leaves the emotional, social and spiritual upheaval of becoming a cancer patient. I don't envy her. But there's a lot of it about.

One in three of us will get cancer at some point.

If that is you, don't expect any advice from me. I don't know how to help anyone cope better with cancer. But I'll be very happy to listen to your story.


Saturday, 25 October 2014

65. When Owl went to Paris


We've made it, Owl and I. We've been to Paris.

I will admit, now that we are safely back, that I was somewhat concerned about getting there. The furthest I ventured during the previous four days was to the hospital shop and back, and that gave me a fever. Paris was more optimistic than I dared admit (in case a doctor heard me and forbid it).

But it was fine. My husband and daughters acted as my luggage carriers. Once in Paris, I could lounge in the appartment whilst the others went off sightseeing. Better than being at home, in fact, where I'd be tempted to start cooking, shopping and doing the laundry.

On the final day, I even managed a spot of sightseeing myself. It's a long climb up to the Sacre Coeur, but there are plenty of steps and benches to sit on. Once I'd made it, I just sat in the church for an hour, listening to the nuns singing, which was kind of restful.

I'm still exhausted. I still spend every afternoon in bed. This is the New Normal, and I am beginning to wonder how I ever managed to fit any kind of Life into my day. (Will it return, that thing called Life? Or is this it? Waving the family off to see the Eiffel Tower and go back to bed?)

But never mind. At least I didn't have to test my theory that the chocolat chaud in French hospitals is superior to NHS hot chocolate.

And let me tell you, the offering in one Paris cafe was superior to any hot chocolate I have ever tasted. Almost better than karnemelk, and that is saying something.

Karnemelk! Hurray!
A Dutch friend brought 3 litres of the stuff last week.
Chocolat chaud in Paris. The best.

Tuesday, 21 October 2014

64. Released from the ward

Bonjour!


From a freely provided London hospital ward to a rented Paris apartment in the space of nine hours.

Talking of extremes.

I looked as confident as I could when the doctor asked how I was feeling. Fine! I'm fine! Look at me, smiling, sitting up! No more fevers! Well, that last bit was true, and it was the most important bit. The ongoing weakness, I still tell myself, is simply because I've been ill and incapacitated for almost two weeks now. Limbs like over-stretched rubber: it will get better. (Won't it?)

In my naivety, I thought that having been re-admitted to hospital with more fevers on Thursday night, they'd let me go on Friday once my temperature had come back down. No such luck. "IV antibiotics until Sunday," the doctor decreed.

It slowly dawned on me that this meant staying in hospital for three nights.

Three nights!! I'm breaking records here. I am not a seasoned traveller in NHS land. A day tripper, yes. Seeing the sights. Scanning rooms, waiting rooms, bad-news-rooms, wig rooms. Only ever pitching my tent up twice. One night for the lumpectomy, two nights for the mastectomy. Home before I have absorbed the culture, learned the language, become institutionalised.

Have I learned to speak In-Patient now? Just a bit perhaps, but with a strong Nurse accent. As soon as I stopped feeling so ill, I was back to fetching drinks and towels for my fellow patients, ignoring the Staff Only signs on the linen cupboard and the kitchen door. Staff? That's me, surely.

By Sunday, the feeling of being one-of-many-patients-on-a-conveyor-belt was melting away.

Several nurses had learnt how to pronounce my name and were beginning to figure out parts of my story. As usual, the student nurses got there first. You're a nurse??! they asked, settling in for the details. Perhaps they have more time; I notice how they can spend half an hour talking to a patient without getting called away. Less of a to-do list in their heads maybe, or simply the energy to pursue their interest in patients, having seen hundreds rather than thousands.

Less expected was the way in which I was also beginning to figure out part of theirs. I liked that. Sometimes it almost moved me to tears (in my weak and vulnerable state), but I didn't mind.

Like the phlebotomist who came to take my blood and told me how her husband had died on this ward, only two years ago.

Or the young nurse whose mother was diagnosed with breast cancer, mirroring my own teenagers' experience (hopefully that will include me being well in five years' time, as her mother now is). I was interested to hear about her inside experience as a young daughter.

Most moving was meeting the doctor who had assessed me in A&E on Thursday night. I bumped into her wandering the corridors on Saturday. "How are you now?" she asked, and I wish I hadn't told her, because it turned out that she was let off being a doctor for a while so she could be here with her extremely ill father. Oh no. We talked briefly about how hard it is to be a professional-turned-relative. On your own ward, no less. I hugged her, hoping they give her father a side room. Can't imagine sitting at the bedside as an (undoubtedly distressed) daughter, with your very own patients looking at you from the other beds.

Then there were the other patients.

I could start writing a book about them. Don't worry, I won't. But I am struck yet again how different we all are, how our life stories (and, undoubtedly, our characters) affect our experience of cancer, how we all have such different coping strategies.




Gladys* was still there, her wig yo-yoing between her head and her locker.

"I don't think about it," she said. "I try to ignore it. I don't talk about it."

Her ears pricked up briefly when one of the nurses asked where I had worked, and I said "Trinity Hospice". 

"They told me last week that I should have a look around a hospice," she said. "That gave me such a shock. I try not to think about it. Perhaps I should."

Perhaps she should. I was so tempted to go and sit on her bed and talk to her about it all, and had to make a concerted effort not to. They were becoming too blurred, the boundaries between me being a fellow patient and me being a nurse.

Dorothy* in the bed opposite, in her late seventies, was here for her third cycle of chemotherapy. Not for her the in-and-out-of-the-VIP-lounge treatment. Each bag of her VIP took 24 hours, and she had five of them. She sat through it all, patiently and quietly, from before I arrived until after I left.

I shared my mince pies with her, bought at 8.30pm from the M&S shop downstairs. It was an emergency. I have never eaten mince pies before December, and neither had she, but when you are feeling ill with your taste buds laughing at ordinary food, who cares. There was nothing in the shop I fancied more. We held them up, Happy Christmas, giggling like naughty school girls having a midnight feast. (It felt a bit like that. New room mate at boarding school.)

I felt sorry for Wendy* in the bed next to me, who was so very miserable. She had more to be miserable about than all of us put together, it seemed (including being in pain and discomfort, and being forbidden to drink even a tiny sip of water, let alone eat mince pies). I could escape after four days of constant moaning, I am soooo fed up. Who could blame her? No escape for her. Or for her daughter.

"She's moved back in with me," Wendy explained as she sat down in my bed. "We get on each other's nerves. We just shout at each other. It's because we are both so worried. And I'm not used to her telling me what to do."

I'd heard the shouting. I just wish that instead of Wendy telling me, they could sit down and tell each other how worried they are.

By the weekend, I'd probably bored all the staff with my mission to get to Paris on Monday.

It looked precarious. I'd spiked another temperature on Friday night. (I blame the late night M&S shopping, overdoing it.) Three times in a week, that's a worry, the doctor explained. Usually, the first temperature settles with antibiotics and that is that, so why do my fevers keep coming back? A whole battery of tests to try (in vain) to find the source of the infection.

But they took my mission on board. When they changed the antibiotics from a drip to tablets on Sunday evening, I should have stayed in another 24 hours, just in case. But the doctor was happy to release me om Monday morning. "Because you are sensible," she said. Hurray.

Just enough time to go home and pack. Shirts, pants, book, hospital letters, stack of pills. thermometer. We boarded the Eurostar at lunchtime. The first thing we asked, on arrival at the apartment, was Où est l'hospitâl?



So here I am. Still fever-free, resting whilst my husband and daughters have gone off to search for the Mona Lisa**. My older daughter turns 15 today. Don't want to miss her special day.

And here's a happy thought: if I do end up in a French hospital, the chocolat chaud will be first class.


*Not their real names
**They didn't find her. Turns out the Louvre is closed on Tuesdays.



Friday, 17 October 2014

63. More hot chocolate

There I was yesterday, on the phone to the on-call cancer doctor at the hospital, trying to convince her that it wasn't too bad really. I've kept a careful temperature chart and it's been up and down, but I've just had two readings of 38 degrees and I'm doing as I'm told, which is to report in as soon as that happens. 

(I was tempted not to. Wait and see. Don't want to be summoned back in. But then I decided that it was not worth risking my life.)

The doctor was having none of it. Solid temperature? No excuses. Got to come back in, and yes, you'll have to stay overnight. How soon can you be there? Hurry, hurry!

This time, my children barely looked up from their homework. Mum going off to hospital again? OK, bye bye, see you. Although my younger daughter gave me a big hug and handed me a quickly scribbled piece of paper on my way out. I don't care if your sick or not I will always love you. Aahhh.



It was evening time, a full house in A&E, people queueing in the corridor. My husband marvelled at the queue jumping power of a cancer patient on chemotherapy. We were whisked through again, more fluids and IV antibiotics, waiting for a bed. But this time, I didn't feel half as ill or frightened..


So I'm back on the cancer ward. Same room.

Same hot chocolate making facilities (although I'm pleased to see Jenny has made it home).

I'm a bit puzzled and frustrated because unlike last time, I am now sitting here feeling fine (well, everything is relative). Last night's temperature has settled. My white blood cells have taken heed and multiplied so spectacularly (probably thanks to the daily boosting injections) that any bug with invasion plans would be foolish to even consider me a target.

And yet I've just been told I will have to stay in at least another two nights. They want me to have IV antibiotics for a couple of days. They don't want to risk another temperature spike at home.

So it's back to making patients' beds and finding our what their stories are. 

And finishing my book, and looking at cats on Facebook. And keeping my fingers crossed that I don't have to pull out of our short family break to Paris in three days' time.

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


Tuesday, 14 October 2014

61. The Resus Room

Within two hours of publishing the last blog post, I had the verdict. The latest chemo is worse than the first lot. By a good margin.

Three hours after publishing that post, my husband had rushed me into A&E and I was wheeled into the resuscitation room.

Never a dull moment: you can say that again.

The good news, as you can see, is that I am back to blogging standard, so things have improved. But if I can help it at all, I'd rather not go through all that again. Three days later, I am still in hospital but waiting for the pharmacist to send up my drugs, so that I can go home. 

We had been warned about the risk of infection. My husband and I both carry the list of symptoms that should prompt us to ring the hospital immediately: a temperature above 38 degrees, or a sore throat, or dodgy bowels, or shivers... With the chemo killing off those all-important white blood cells, an infection can be both sudden and catastrophic.


So when, within the space of an hour, my temperature had crept up from its usual 36.4 to over 38, my husband rang the on-duty oncology doctor.

"Bring her into A&E," she said. "Pack a bag for three days. I'll make sure they are ready for you."

We should have been more prepared. Have the hospital bag ready just in case, like a pregnant woman. By the time I'd crawled along the floor to gather socks and pants, and my husband had sent the youngest off to a friend's house with an overnight bag, it was an hour later. By which time sitting in the car was torture. I crawled onto the back seats so I could lie down. My chest felt so tight I could hardly breathe, I was breaking out in cold sweats and was worried I would pass out.

Sudden infection, I panicked. Could kill you in hours. In the slowing Saturday afternoon traffic, would it be quicker to abandon the car and call for an ambulance? It's not far to the hospital. My husband pushed on.

Don't let them make you wait, we'd been instructed. Explain! Neutropenic patient on chemotherapy!

But my husband was having no luck at the reception desk. Just wait over there, they said, until a triage nurse is free to see your wife. There was someone already waiting in front of us. I was both relieved to have made it to hospital, and in a panic about feeling too ill to sit or stand.

No problem: I collapsed across the row of chairs and took off my hat.

Instantly effective: within seconds, a nurse had rushed me into a cubicle.

See? A bald cancer head gets you places. (With the exception of private woods.) No-one will tut or question the queue jumping. Make way! Oh, the relief of lying down on a trolley, like a feather bed in a five star hotel. My bones were aching and aching.

It's a pretty standard protocol for them. They whip in an intravenous line, take bloods, get ready to set up the fluids. The resus room, they said, would get me treated more quickly, so in we went. Bags of just-in-case antibiotics. Intravenous paracetamol to get the temperature down.

We ended up staying in that resus cubicle for several hours, by which time the trolley had begun to feel more one star than five. The blood results showed, thankfully (and surprisingly), that my white blood cells were plentiful, more than sufficient to fight an infection. There were no other signs of infection anywhere.

The verdict was that these spiking temperatures and other nasty symptoms were simply caused by my body protesting against the foreign invasion.

In protest? On strike, more likely. I don't think I have ever felt so ill in my life.

They gave me the choice. I could go home and sit it out. But if I wanted to, they were happy for me to stay in hospital.

The fact that I chose to stay in hospital was an indication of how ill and miserable I felt. I would never have thought that, given the choice, I would prefer hospital to home. Even the thought of having to give birth in hospital freaked me out (all my three babies were born at home). But now, the thought of being home had me in a serious panic. What if the temperature climbed up further? How would I know whether it was something to worry about or not?

So, we waited and waited for a bed to become available. It took a couple of hours, by which time I longed for a bed with a blanket and a pillow, and for the relative quiet of a ward. I was so exhausted, feverish and achy that even lying down took a Herculean effort.

Beeps and rings and phone calls and discussions about patients and the voice of confused 84 year old Mavis* in the next cubicle. I could now give you Mavis' entire social and medical history. She was lucky to have her son with her. How the NHS would manage without carers, I don't know. Although in possession of my full faculties, I was hugely grateful for my husband's ability to answer repeated questions about allergies and my date of birth.

Finally, we were told that a bed was available on the cancer ward.

I was so relieved. This is the ward with the VIP lounge, which also has beds. The nurses and doctors would know what they are doing.

As the porter wheeled me through the quiet corridors, past the stairs to my office, I was vaguely conscious of how bizarre it was to be here like this. I have walked these corridors for well over a decade, always in a decent outfit and often with recent use of my four items of make-up. Here I was, ill, bald, utterly miserable.

No matter. I felt safe.

Now, three days later, my drugs have just arrived and I am waiting for my sister-in-law to turn up and take me home. I'll tell you the story of the cancer ward tomorrow.


*Not her real name



Owl and I in the Resus Room

Saturday, 11 October 2014

60. Tired

The jury is still out. Is Docetaxel better or worse than the previous chemo cocktail?

I'm giving it serious brownie points for not causing quite as much nausea. Apart from the occasional retch, at least that particular nasty foe seems under control. Saves on the pills, too. Only one type of anti-sickness this time, instead of four. 

But boy, the tiredness.

This is something else, and it's already wearing thin. The first two days were fine, sort of. Being ill and unavailable was in the diary. The older ones had their tea-making instructions; the youngest was farmed out to her cousins. By now, we are prepared.

Utter exhaustion in week 3 of the chemo cycle will have me in tears of frustration, if past experience is anything to go by. But during those first few days, I didn't mind being tired if that's as far as the side effects went.

Three days later, and I'm not so sure. I have spent most of the time in bed and seem unable to cope with anything that requires the slightest effort. Talking, reading, watching TV, finding lost Scouts uniforms. (Especially finding lost Scouts uniforms.)

Today the bone ache is creeping up on me. I thought I'd do the short five minute walk to the shops, just to keep moving (it can't be good to just lie in bed, seizing up), but I had to turn back before I got halfway down the street, because my chest felt so tight I couldn't breathe. My bowels are loosening. I keep breaking out in a hot flush, leaving me with a cold sweaty bare scalp which feels, quite frankly, bizarre.

It would be rather nice to get the diary out and mark the date when this will all pass.

Will there be a Suddenly, I feel much better moment? I hope so. In the meantime, I'm in hiding. 




Wednesday, 8 October 2014

59. The chemo collapse

Within 10 minutes of the new chemo drug starting to drip into my vein, I was surrounded by four nurses busying themselves closing the curtains, stopping the infusion, rushing off to get me injections to counteract allergic reactions, alerting the doctor. 

This time round, the chemo collapse was immediate and spectacular. 

Just as well I had a friend with me, my stylish and sensitive friend who'd accompanied me to Wish You Were Hair. She was more sensible than me.

Among the alarming new side effects my doctor had listed at the pre-chemo appointment, such as bone pains and muscle pains and a tingle in my fingers and a tingle in my feet (potentially worsening to pain and numbness), and more severe tiredness than on the previous rounds, I thought I'd heard the words Hot Flushes.

So when, five minutes after Docetaxel (the chemo drug) was started, my face and ears suddenly started burning and sweating, I flung aside my scarf but was prepared to put up with it. More worrying was the accompanying pressure on my chest, the wave of nausea, lightheadedness and headache.

My sensible friend was having none of it and grabbed a passing nurse. As luck would have it, it wasn't my allocated nurse for the day, but Saviour Nurse.

"Is this normal?" asked my friend.

Saviour Nurse took one look at me and said, "No it's not!" Apparently, I'd turned tomato red.

She called for her colleagues (including my own nurse for the day, who, despite having done this job for seven years, didn't seem sure what to do and looked to Saviour Nurse for guidance, as did the others). She went off and returned, just a couple of minutes later, with syringes full of antihistamine and Piriton. It was like Piccadilly Circus, what with nurses taking blood pressure and temperature, fiddling with drips, the ward sister coming in to reassure me.

They kept asking me whether I'd taken my steroids. Can't have Docetaxel unless you have loaded your system with steroids to combat reactions like this. (I had. By the time I'd gone through the cleansing and toning and moisturising last night, it was one o'clock in the morning, but the steroids kept me awake until 4.30am).

To cut a long story short (I have no energy for long stories), when the doctor came an hour or so later, the verdict was that I could still have the chemo, but it had to be slowed right down. So rather than the whole process taking an hour and a half, I was hooked up for five hours.

And I was ok, sort of. Saved by that same chemo nurse once again. She deserves a medal.

The flushes and the breathing and the headaches settled. My friend gave regular colour reports, my face flaming red, paling to white. No amount of make-up training would have helped.

I managed to talk a little with my friend. Do a bit of people watching. My fellow patients were a chatty lot today, and there were several volunteers settling in for one-to-one conversations. One of them serenaded each patient with their song of choice. I managed to avoid them all.

The tiredness that had hit me five hours after coming home on previous rounds, took hold on the spot. I reclined my chair as far as it would go and just wanted to crawl into a hole. My nurse produced a blanket.

Reflexology Man came and worked his magic. I snoozed through it all, waking just enough to be shown how to rub and pinch my hands out of the promised numbness.

"It's poison!" my friend said with feeling.

I know. Tell me about it. It's vile. Welcome to the VIP lounge.

I'm writing this in bed. I am shattered, but, on the upside, at least there is no nausea. 

No idea how the coming week will pan out. I might be in touch. But I might not. Watch this space. 


Tuesday, 7 October 2014

58. When Owl had a make-up lesson


We've been to class, Owl and I.

A two hour afternoon make-up workshop, specially for women with cancer.

I came in looking tired and feeling tired, and left looking sprightly and feeling tired. Result. (Or is it? Now people will look at me with renewed hope and tell me how very well I look, leaving me to decide whether or not to give them the bad news... Thank you, but I feel rubbish.)


So, here we are at the end of the session. Looking good and feeling tired, clutching our free goodie bag full of beauty products, donated by the make-up industry to a charity that runs these sessions.

They call the sessions Look good, feel better. I suppose that's a better name than Look good, still feel rubbish.

In all fairness, though, it was lovely. And most of our group of eight women (plus Owl, who was let in on account of having cancer, even though he's not a woman) did seem very happy afterwards. It is indeed nice to look in the mirror and not see that exhausted cancer face.

Now, let's start by putting all this make-up in the perspective of my sparsely made-up life.

"I'm different from the other girls because I don't use make-up, and I don't want to either... They keep wanting to do a make-over on me but I don't want all that rubbish on my face. I don't know whether I'll ever use make-up in the future."

I was almost 14 when I wrote this in my diary, and I can finally answer the girl I once was.

It took me until my wedding day, aged 31, to put "that rubbish" on my face.

Not having a clue, I got my younger sister to do it for me. She was the one beautifying her barbies whilst I put my life-like baby doll in its pram, so she had know-how I sorely lacked. She used four ingredients. Brown eye shadow, eye liner, mascara, blusher.

I was so impressed that I started using it occasionally. For special occasions, and later, for work. Sometimes, I'd have a phase of making a daily effort. The four ingredients only take me a few minutes to slap on. I can just about do that before rushing out, looking good. (Or so I think. My younger daughter, taking after my younger sister, begs to differ and deems me to be a hopeless case with absolutely no eye for eyeliner.)

But the spirit of my teenage self is still there. The wedding mascara lasted over a decade, and then I had to throw it out, not because it was finished but because it had decayed. My effort-making phase usually disintegrates after a few days. Mostly because when it comes to evening time, I remember, just as I am about to hit the pillows with a contented sigh, that I have to take all "that rubbish" off again.

This is a long way of explaining why, when I was offered the make-up session, I jumped at it.

Not because I felt the need to be beautified, and not because I thought it might make me feel better. Although that was the stated aim: "to help women combat the visible side effects of cancer", with the result that many women "regain a sense of normality and control," their website says.

Clearly, that won't be me. Putting on lots of make-up is definitely not normal.

But I've sometimes wondered whether I was missing out. There's a whole world out there, endless pots and tubes in shops, and I haven't a clue what they are for. Plus, there must surely be more to it than brown eye shadow. So I signed up.

The sessions are run monthly at my hospital. I couldn't make the first one, because if was only a week after my first chemo. So this one was perfect, on the final day of week three. My next lot of chemo is due tomorrow morning. If I was going to have any semblance of energy, this was going be it.

Plus, they've put me on a high dose of steroids from today, prepping my body to cope with the side effects of tomorrow's different chemo drug. That should leave me buzzing nicely. (It is, indeed. But it's only kicking in now, in the late hours. I might as well have drunk ten mugs of strong coffee. This afternoon, I was quite tired.)

Then they rang me a couple of days ago. Did I mind being filmed?

There would be a TV crew keen to promote the charity on their breakfast show. No matter if you don't want to, they can leave you out of the picture.

I thought about this. Why did I feel so unhappy? I'm merrily blogging away, posting pictures of me with no hair, weeping in woods. Everyone knows I've got cancer.

Yet, somehow, this felt too intimate to be filmed. What about the promise of a safe, intimate setting? I decided I didn't want to be presented as a recipient of charity. Look at that poor bald woman, and isn't it lovely that they are making her presentable with a bit of make-up.

Not only that, but as a grown-up make-up novice I wasn't happy to be watched putting blusher on. (Just as well, as it turned out. I slapped on so much that I was blushing through the blusher. Unable to wipe of these bright red cheeks, I had to cover it up with more foundation and concealer. Told you: I'm a novice. And as you can see, I've not only learned new words, I now own these things, and know what they do.)

It wasn't just that I was unhappy about being watched by the nation. I was also unhappy about being watched by the TV people. So I pulled out, disappointed. Thankfully, they found that there was another workshop down the road in Wimbledon. They were happy to take in a refugee from Tooting.

It was a pleasure, sitting down with all these women.

Some of them had finished treatments (hair grown back and all); some were just starting (still waiting for the hair loss); others were bang in the middle of chemo. The woman on my left, as it turned out, was at exactly the same point as me. Breast cancer, FEC-T chemo, about to have cycle 4. She looked as shattered as I felt. We kept muttering how exhausting it was to go to things like this (however nice). It was lovely to meet her.

I've fiercely resisted going to any share-your-cancer-experiences groups. I would simply turn back into being a nurse, supporting everyone else. Been there, done that. This workshop was different. There was no round-robin of introductions, Hello I am Irene and I have breast cancer, which would have reminded me of work.

The woman on my right was having various operations for nose cancer. (Never heard of it, and that is saying something, with my years of experience as a hospice nurse. Perhaps you don't die of nose cancer? I didn't tell her that. I know how annoying it can be when people say "Oh you'll be fine, you'll survive this." It sounds like a platitude.)

Next to her was a woman with a recent diagnosis of cervical cancer, who, after one round of chemo, was quizzing me on the hair loss she had been promised.

There were a couple of wig wearers, I think, but wigs really are good these days. You can hardly tell. There was a woman with a scarf covering her (presumably scarce) long hair. I was the only one dispensing with my scarf as soon as I sat down. Can't  be doing with annoying head coverage whilst fiddling with pots and tubes. The others were told that they, to, should feel free to take their wigs off if they wanted to. But no-one did.

It didn't matter. It showed, once again, how different we all are, and how important it is that you do what you feel comfortable with. For most, that was covering their head. For me, it was not covering my head.

There were three volunteers. They were all beauticians, two with a proper qualification, one with a job in the make-up section of a department store (the kind of woman I whizz past at speed for fear of getting sprayed with perfume).

As we took our place around the large oval table, laid out with mirrors and cotton pads, we were handed our make-up goodie bag.

Blimey. It was large enough to do me for a weekend away, and twice as heavy. I have never, ever owned this many beauty products in my whole life put together (not counting shampoo). Properly sized stuff with brand names I recognize, Estee Lauder, No 7, Lancome. We were impressed. It was like Christmas. It took us ages to lay it all out. 


Finally, all laid out and ready to go.

They showed us what to do, step-by-step (and goodness, there are a lot of steps), demonstrating on one of us whilst we all copied. Hovering around with help and personal advice. Definitely needed. Do I use my Gentle Cleanser here? Or my Make Up Remover? Something called "Perfectly Clean", a Balancing Toner? Goodness, I'm going to have to number these various pots, so I don't use them in the wrong order.

Turns out that I have indeed been missing out.

On hours, weeks, months of my life not spent creaming and toning and painting; of thousands of pounds/euros/guilders not spent on beauty products.

We were handed a leaflet that showed the 12 steps of doing make-up. It was even called that: "The Twelve Step Make-Up Programme." Some of these steps involve more than one product (Don't use your mosturiser around your eyes! Use eye cream!) I counted 17 steps altogether. My humble four items at home, clearly, weren't going to make the grade.

Nor was my stock control.

"Once you've opened it, you have to use it within six weeks, otherwise it'll be full of bacteria and you'll get an eye infection," the volunteer warned. Or was it six months?

Either way, using the same mascara tube for over a decade didn't sound great. I lied and told her I'd used mine for five years, and she was almost struck speechless, looking horrified.


Looking good? I think so.
I have to admit: it did look good.

My skin looked better, the heavy bags under my eyes had miraculously disappeared - even if it did take so many layers of stuff that I lost count. The make-up wasn't over-the-top.

The woman on my left looked particularly wonderful and particularly pleased. Quite rightly so. We wished each other luck.

Coming home, my younger daughter opened the door, snitched my heavy goody bag and ran to the kitchen with thieving intent.

"Mine!" she said, separating the pink-looking things from the boring cover-ups for old people. But I grabbed it all back, even the pink lipstick. The only thing I let her keep was the perfume. We were told not to open it during the session ("People on chemotherapy often can't stand the smell"), and for good reason. Wafts of it hit my nostrils with a vengeance when she tried it out.

Even she admitted that I looked OK. But when Bear peered at Owl, he was rather bothered by it all.

"Doesn't he look good?" I asked.

"Well, ehhmm, yes, I suppose so," mumbled Bear. "But he doesn't look himself."

I suppose I feel like that, a little bit.

Even so, I'll keep it all. I might even use it all, sometime. Not every day, mind you. I haven't really changed since I was 14. I still prefer to spend my morning hour swimming, or meditating, or reading a book in bed.

Now, it's well past my bedtime and although I'm still buzzing on those steroids, I long to go to bed. Goodnight.

Oh no... I can't. I have cleansing to do, and toning, not forgetting the different products for eyes and cheeks. Bother.


My younger daughter wants all things on the right. She won't need a lesson when she is 51.