Go Ahead, Make My Day

“My question is this,” my tone is defiant, “if I don’t have cancer, why do I need to take Tamoxifen?”

At this moment Mr Hadjiminas has the demeanour of a man who has gone to ground. Holed up behind his desk. Hunkered down with ball point pen, flak jacket and helmet.

But I think I’ve got a fair point.

For some time now I have been agonising with this decision – whether or not to take Tamoxifen. Tamoxifen is a drug that is prescribed for those, like me, whose tumour is found to be oestrogen receptive. My oncologist, Suzy Cleator, strongly recommends Tamoxifen for me. She says that, after surgery, it is the second most important treatment for the type of cancer that I have had.

So why do I hesitate? Well, here are the possible side-effects of Tamoxifen: early menopause; nausea; hot flashes; weight gain; hair thinning; loss of libido; thin skin; vaginal dryness; skin rashes; strokes and deep vein thromboses; dementia; blindness and, most worryingly, endometrial cancer and cancer in the other breast of a more aggressive type.

And why do I need it at all? The cancer has been removed, first by surgery, then any lurking cell anywhere in my body poisoned by chemotherapy. Finally any tiny bit of tumour that thinks about rearing its head is currently being nuked with radiation therapy. Answer: I think that the reason is that, um, if the cancer were to come back and it is oestrogen receptive then this Tamoxifen will ensure that it doesn’t have any oestrogen to feed and grow upon. But if that is the case, why is breast cancer so much more common amongst women who have passed the menopause and are no longer producing as much oestrogen? Answer: I don’t know. And how common is it for the cancer to recur within five years, if one has already had surgery, chemo and radiotherapy? Answer: I don’t know. What happens if the cancer comes back after five years? Answer: I don’t know. How common are the various side effects? Answer: I don’t know. What are the survival rates after ten years for women having taken Tamoxifen along with chemo and radio as opposed to those therapies alone? Answer: I don’t know.

“Maybe it’s a belt and braces approach? Like an insurance policy,” suggests Nick. It sounds so simple – just take it, to be on the safe side.

It seems that I have a lot more questions to ask. But I don’t know who to ask them of. My oncologist Suzy Cleator has gone off and had a baby (congratulations to her!). My other oncologist Carmel Coulter has gone off on holiday.

So here I am bearing down on Mr Hadjiminas again, giving him both barrels of my panic and anxiety. I’ve brought Tessa with me for moral support. Poor old Mr H only has Honoria on his team. She is about eight-and-three-quarter months pregnant and can barely stand up.

“The thing is this,” explains Mr H, “If we had a big scanner we could put Lily in and say “there’s not one speck of cancer remaining in her body” then we certainly would never give you any Tamoxifen. But we cannot be sure that the chemotherapy got every single cell of cancer in your body.” He continues, “statistically after ten years we find that out of a hundred women similar to Lily, who have had surgery and chemotherapy, twenty-five will relapse. So in retrospect, we see that there must have been some cancer cells left behind in them.” I nod. Tessa grabs a pen and takes notes. “But with Tamoxifen for five years we might find that only eighteen women relapse.”

“So, um, that’s seven percent fewer?” I ask, calculating in my head. “Yes,” agrees Mr H, “I think it’s a significant difference.” “But if I’ve endured five years of hot flashes and itching skin, had a stroke, gone blind in one eye and got cancer of the uterus, I might not want to be alive,” I retort, with an air of empty triumph.

Mr Hadjiminas steeples his fingers. “The risk of cancer of the uterus is increased but it is still very small compared to the risk of recurrence of your breast cancer. And we would monitor you all the time so if you did develop it we would pick it up straight away.” “Yes, but I would still have the cancer,” I reply. “That’s true,” says Mr H, “but it is 100% curable.” I don’t want to ask him what the cure involves. “The risk of stroke in a woman your age is about one in a thousand. That would be doubled to two in a thousand. The same goes for blindness. The risk increases by 50% so it would go from maybe two in a thousand to three in a thousand. Macular degeneration is an old person’s disease. It’s unlikely to affect you.”

“Is there anything else you’re worried about?” interjects Honoria, “the early menopause perhaps? Some women worry that they will suddenly start to look old.” “Well yes,” I wail, “I don’t want to be old. I don’t want to look all wrinkled and fat.” “But you won’t” says Mr Hadjiminas. “But I’ve read that Tamoxifen thins your skin and so you start getting wrinkles.” “Where is the evidence?” cries Mr H. Did someone take a piece of skin from a woman taking Tamoxifen and compare it with another woman’s skin? No!” I love Mr H’s enthusiasm for his work. “Some women come back after taking Tamoxifen for five years and complain that they look older. I tell them - well you are five years older,” he concludes.

“What about this ER-alpha S118-P? I read that Tamoxifen is effective in people who have high levels of that but not in people with lower levels?” At this point I’m shooting in the dark because I left the article that referred to this on the dining table at home. I have no idea what ER-alpha S118-P is. “Where did you read that?” asks Mr H. “Science Daily,” I hesitate, “I think. Can you test for that?” “Yes, we can do a test,” he replies, “but the studies are not certain. And if you found you had a low level, would you decide not to take the Tamoxifen?” “Oh I don’t know,” I reply wearily, “if I had a high level, I might decide in favour of taking the Tamoxifen.”

By now my head is spinning and I don’t think I can absorb any more Tamoxifen information. I ask Mr Hadjiminas to have a look at my back. It has filled up with fluid again. It’s painful but more than that I find it very distressing. Mr H says that if it hasn’t settled down by next week he will give me a steroid injection. I don’t even ask him what the side effects of that might be.

I change my mind about Tamoxifen twenty times a day. I talk about it all the time, to everyone. It spills over into my thoughts and dreams. On the one hand is the undeniable cool logic of Mr Hadjiminas’s approach: try it and see. On the other hand is my deep and instinctive terror of this drug. The jury is still out.

Daisy arrives for our singing lesson. Afterwards I feel relaxed and revived. She asks me how I am and I tell her about my dilemma. I run through the arguments for and against. I give her all the angles. “It comes down to this,” Daisy states flatly, “do you feel lucky?”

Anxiety Busters

I had hoped that the end of chemo would coincide with the end of my worries and cares. What with everyone going on about how radiotherapy is such “a walk in the park” and so on I had imagined myself and my slightly pink breast, bathed in rainbows, tiptoeing through the tulips hand-in-hand with Nick, pausing here and there only to pluck a fresh chocolate éclair from the trees.

So I’m a bit surprised to find myself regularly breaking down in tears with Nick having to calm my frenzied bouts of anxiety. Of course money is always a worry for anyone dealing with a serious illness. Those of us who are self-employed don’t even get sick pay. Social Security payments won’t cover the cost of organic groceries, let alone health insurance, home insurance, petrol, parking, new roofs, clothes, phones, broadband, Hermès scarves and a thousand other daily expenses. So, like many people, I’ve borrowed and gone into debt to get through. I am very lucky that my sister Miranda has been able and willing to bail me out.

Another source of anxiety is the prospect of long-term side effects of the various cancer treatments. A quick google will throw up endless opinions that both chemo and radiotherapy cause other illnesses. Many of these are simply scare stories. God only knows who originates them and for what possible reason. But then there are solid concerns too. Last week I read about long-term side effects of radiotherapy on the website of Cancer Research UK. Apparently it can cause fibrosis that leads to hardening and shrinking of the breast. It can also trigger Lymphoedema.

I was quite taken aback. I feel as though I had not been fully aware of these possibilities. I don’t know how commonly it happens. Tomorrow I will be seeing Dr Coulter, my temporary oncologist so I will be able to find out more and report back to you.

But it was enough to start the little hamster of anxiety running on its wheel. Pretty soon my mind has worked its way around to the big looming unknown: Tamoxifen. When it comes to this drug, opinions are polarised. According to Suzy Cleator, Tamoxifen is the most important treatment for Oestrogen Receptor positive breast tumours (the type that I had) after surgery. Many in the medical profession swear that it’s a wonder drug that has changed the outlook for breast cancer sufferers. According to many in the alternative camp it is a destructive and misogynistic treatment that wicked drug companies have sold to credible doctors for their own greedy ends.

The inescapable fact is that Tamoxifen is known to cause blood clots, strokes, cataracts, hot flashes, headaches, fatigue, nausea, vomiting, dryness of the vagina, itching skin, rashes and cancers of the uterus. I still have a lot to find out and a lot of questions to ask. But I sometimes feel that I will inevitably have to make a decision between a disease that may kill me and a drug that may kill me.

The thing that really gets to me sometimes is that a few months ago I was told that Mr Hadjiminas had completely removed the tumour from my breast. The more I learn the greater seem the risks associated with what I had understood to be a ‘belt and braces’ approach.

I’m telling you all of this because you too may be feeling anxious about chemotherapy, radiotherapy or Tamoxifen. You are not alone. I will write more on the matter in the future. But even those who have studied and researched for many years disagree. We simply must do our best to inform ourselves to a point where we feel comfortable with whatever decision we take and then embrace the unknown. In the end, there are no wrong decisions.

Although the situation is disquieting, indulging worry and fret makes no positive contribution. On the contrary, it increases our stress levels. Here is a roundup of all the different techniques I have used for alleviating anxiety.

Breathing. This is obviously a good idea, yet I forget to do it. When anxiety strikes I find myself all tangled up, holding my breath or breathing out when I should be breathing in and then gasping for air. Then I remember to take a minute or two just to calm myself with controlled breathing. Count slowly to four then breathe in for a count of four. Hold your breath for a count of two. Breathe out for a count of four. Hold your breath for a count for two. Breathe in for a count of four...

Singing. No need for talent, just grab a hairbrush and put on an Abba cd. Dance around the living room warbling, wailing and screeching your head off. It creates harmonious resonance in the body and floods the lungs with oxygen. Singing in the car is a fantastic stress buster.

Crying. Don’t hold it in. Go to see a weepy movie and have a good old cry. I always keep a pocket packet of tissues in my handbag these days.

Walking. Don your trainers, or socks-n-crocs if your toes are sore, then hit the streets. Walk slowly and with a rhythmic pace. As you walk try to simply release any thoughts that come into your head. Use this simple mantra: "let go". Think l-e-t as you breathe in. Think g-o as you breathe out.

Yoga Nidra. Put some dolphin music on if that’s what floats your boat. Or Mozart. I listen to a wild soundtrack called ‘Wind and Rain’. Lie on the floor in Savasana. That is on your back with your legs apart, your arms resting palms up at about 45 degrees from your body, your neck extended and your chin tucked in slightly. Savasana literally means ‘corpse pose’. Begin to breathe regularly from your diaphragm. Close your eyes and as you breathe bring your attention to your third eye, the place between your eyebrows. Now say your Sankalpa out loud, three times. Sankalpa is something like a positive affirmation. This is my Sankalpa: “I am happy. I am healthy. I am whole. I am sexy. I am prosperous. I am loving. I am loved. I am FREE.” Next scan your body, checking for any tension or contracted muscles. Start with each finger on your right hand, the palm, the back of your hand, the forearm, the elbow, the upper arm, the shoulder, the chest, the side, the waist, the hip. Repeat on the left side. Next scan each leg from the toes upward, in turn. Scan your spine, neck scalp, ears, face and throat. Relax any areas of tenseness that you feel. Next, imagine your body to be very cold, as if standing in the snow in bare feet, then feel your body to be warm, as if sitting on a sunny terrace. Then feel your body to be very heavy, sinking into the floor. Then light as a feather, hovering above the carpet. Next, imagine yourself walking in a lovely place – somewhere that is special to you. Feel the earth beneath your feet, the breeze on your face. See the sunshine, smell the flowers. Find a comfortable rock beneath a tree with a wonderful view of your world. Now repeat your Sankalpa three times again. Bring yourself back to now by wriggling your fingers and toes and then having a lovely stretch.

Oh, there are lots of strategies but I’m tired now. That should be enough calming measures to keep you and I both sane for today. More later.

Not so Fast

I am sooooooo tired. Thinking that the chemo is all over and I would be back to normal I booked in several appointments today. First, a committee meeting about a charity event then a surprise birthday lunch for my friend Sumaira and finally the movies with Sheldon.

Having fallen asleep at seven-thirty last night, I jump out of bed at the crack of ten. I make a divine fennel, grape and lime juice, run the juicer parts under the cold tap and hop in the bath. Ten minutes later I hear splashing. It sounds like it’s coming from somewhere quite close by. I ponder for a while on what it might be. I’m hesitant to get out of the bath because last time I did that I slipped and fell, injuring my foot and cracking my head. But finally I feel that I must investigate.

The kitchen sink is overflowing and there’s an inch deep puddle all over the floor. I skip about chucking down every towel and tea towel that I own, empty the bath and then pile the sopping textiles into the tub.

What has become clear to me is that the chemo has not yet left my body. Nor my brain.

And So the Chemo Ends

So at last, I’m off to Harley Street for my final chemo session. I get up late, as usual, then stagger about getting dressed and making cards for the nurses. I like to print my own photographs as cards for special people.

Nick Skypes: “I just want to tell you that I love you and I hope it all goes well today.” I have to say I’m feeling very emotional.

I have been thinking about an appropriate gift for the nurses. I know that they get inundated with cakes and chocolates. Yet it’s difficult to think of another gift that they all can share. I recall bringing them a bunch of flowers once to cheer up their front desk. They thanked me but the flowers were quickly ‘disappeared’ without ever being unwrapped. I guessed that they must have fallen foul of the no flowers rule that is often in force in intensive care units, chemo units and such places. Apparently flower pollen can cause infections. In the end I’m not imaginative enough to think of any alternative gifts. Paul does a lovely gift box of mini macaroons. Four of each in six different colours. They’re elegant and merely a mouthful. As much a treat for the eyes as for the stomach. If I had the energy I would go up to Harrods and get the Ladurée ones that Iris is always raving on about. But I haven’t. Anyway, the ones from Paul are pretty damned delicious.

Macaroons on board, I pop up to Daunt Books and buy cards to replace all those that I left on the table at home. I don’t admonish myself anymore. It’s just chemo-brain.

The unit is quiet today. I’m thankful for that. I don’t feel like being surrounded by drama on the last day. Nurse Cara does my observations: weight, blood pressure, temperature and oxygen saturation. Nurse Karen looks at my feet. "Crocs n'Socks will soon be on the runways," she observes.

Karen wraps my arm in a heat blanket to aid the manifestation of a vein. The veins in my arm are pretty well worn out at this stage. But I’m truly thankful that at least one of them has held up to the end. I haven’t had to have a central line installed in my chest, as I’ve seen many have. All-in-all, I feel that I have had a pretty easy ride of it with chemotherapy. I have read, heard and seen some real horror stories. It’s been difficult and miserable at times but never intolerable. I haven’t suffered major organ damage, I haven’t been admitted to hospital, I haven’t had to have a blood transfusion, my fingernails have not fallen off. What more can one ask for?

With a few inadequate words of thanks, I hand over the macaroons. With eloquent and gracious words of thanks, nurse Karen accepts them. Then she gives me a big hug. One might get the impression that this is the most beneficent gift that they have ever received. I am sure it is not.

The chemo itself is uneventful. Sandra comes by and gives me a deeply relaxing reflexology treatment. I will miss those. Karen offers me a macaroon. I recline in the big armchair, eating a macaroon and having my feet rubbed. “It doesn’t get much better that this,” I remark. “Well you could have George Clooney bringing you a glass of champagne,” observes Sandra. “You’re right,” I sigh, “I knew there was something missing.”

Finally, the chemo is finished. Nurse Karen unplugs me and it’s time to leave. She hesitates a moment before applying the mini plaster to the spot where she removed the needle. “We just have to be a bit careful,” she says, “sometimes people have gone off and then come rushing back with blood pouring down their arms.” “I’m sure that won’t happen,” I say. “It’s never happened before.” I put on my jacket and hug them all. I will be happy not to have chemotherapy anymore but very sad not to see these nurses. “Goodbye, goodbye,” I have to blink back tears. Then, as I reach for the doorknob, I feel a trickle on my hand. I rip off my jacket and throw it to the floor. Blood is pouring down my arm. I rush back in for a final dose of care and attention. It’s a psychosomatically induced blood spout, I’m certain of it.

My last stop is to see Suzy Cleator. It may be difficult for you to comprehend that one can be genuinely pleased to see an oncologist. But I am. She has become a good friend to me. She is heavily pregnant now and will soon be stopping work, so the end of my chemo treatment is an appropriate moment to hand me over to the new oncologist, Dr Coulter.

Suzy confirms my opinion that I have tolerated the chemotherapy very well. I have to say that that is very much due to her expertise. The weekly regime of Taxol has been a big success. I hand over her card and start to choke up again.

Honoria pops in. She is heavily pregnant too. I will, however, be seeing her again. In two weeks time when I come for radiotherapy ‘planning’.

Suzy raises the subject of Tamoxifen. It’s a hormone therapy that she is recommending that I take every day for the next five years. I shift uneasily. I’ve read and heard all sorts of conflicting things about Tamoxifen, many of them quite scary. Of course I haven’t got any of my facts straight. “I am concerned about the side effects,” I say, in an embarrassed tone. “It is highly recommended for you. Your tumour was oestrogen receptive. So if there’s still any lurking about the Tamoxifen stops it being fed with oestrogen. You can try it, and if you find it too difficult you can decide to stop,” says Suzy. “I’m worried it will cause bone loss,” I reply. “Tamoxifen has a bone protecting effect,” Suzy rejoins. “Oh, I don’t know. Of all the therapies, this is the one that I feel most uncomfortable with,” I say, unconvincingly. Suzy clears her throat, “Of all the treatments for breast cancer, surgery is the most important. The next most important is Tamoxifen. Then chemotherapy, then radiotherapy.” I study the floor. “I think the best thing,” says Suzy with one of her indulgent looks, “is to discuss this after you’ve had the radiotherapy."

She sure has learned how to play me.

I wish both Suzy and Honoria all the best with their births, bid them goodbye and leave.

Then I step out into Harley Street and into my future.

Entertaining Doubts

Sometimes I wonder if I my decision to have chemotherapy was the right one. After all, I don’t have cancer. Mr Hadjiminas got it all out, yes?

It seems to me that the principle behind chemotherapy is this: They shoot one with a machine gun and hope to hit the correct targets, if there are any targets to hit.

The side effects I’m experiencing are niggly, but taken as a whole, rather debilitating. I’m fatigued beyond reason. Some days I struggle to get out of bed before the afternoon. Everyday tasks seem insurmountable. The thought of emptying the dishwasher floors me. I have persistent ulcers in my mouth and under my tongue. They make it painful to eat or talk. My fingers tingle and my toes hurt. My nose bleeds a little, but often. I have spots on my face. Worst of all, my fingernails have started to go yellow and lift away from my fingertips. They’re turning manky.

Meg calls me on the telephone. “I just want you to know that you’re doing the right thing,” she informs me. “Why is that?” I query. “I have a friend who was diagnosed three months ago with early stage cancer like you. It wasn’t aggressive. He declined the chemotherapy. Yesterday, he died.”

I would be eternally cross with myself if I declined the chemotherapy and then died. So I think I will spend more time in bed, eat more Manuka honey, carry packets of tissues and bottles of water everywhere with me, slap on the concealer and obsessively rub Jason Vitamin E Hand Lotion into my fingernails.

Only three more chemos to go.

They Don't Know They're Born

I’m back now. Once again, I apologise for my pout.

This Chemo is a bit of an up and down business. They told me at the beginning that the effect is cumulative. I think I’ve been getting away with it so far. I’ve kept myself fit, eaten well and had relatively few and minor side effects, compared with what some people go through. But I’m starting to feel bone tired. I’ve spent many hours in bed or on the couch in the last couple of days and it just seems very difficult to do anything.

I recall being told about the possible side effects back before the chemotherapy all began: tiredness, nausea, mouth ulcers, numbness, constipation, diahorrea, dhiaorrea, runs, hair loss...

Full of fear, I relayed the gloomy outlook to Ben. “Lily, those doctors and nurses,” said Ben. “Yes?” I asked. “Have they ever been on a three day bender?” “I guess not.” I replied. “In that case,” said Ben, “they don’t know what they’re talking about.”

A Variety of Rants

To Harley Street for my blood test. There’s more than the normal level of mayhem going on at Chemo Central. As I fling the door open I nearly flatten some poor cancer sufferer. He’s got a tracheotomy valve in his throat so he can’t scream or hurl abuse at me. That’s lucky.

Another guy has sprung a leak in his port-a-cath and has removed his shirt. The nurses are trying to get it washed and dried and coax him into alternative apparel. But he’s not happy. “What is this?” he pouts. “It’s a theatre smock” cajoles Sister Lottie, “just try it on for the time being.”

I scamper down to The Providores to meet Flossie and my friend David who is visiting from New York (I’m telling you his real name since I will probably post a link to his website). As I walk in, David is reading Peter Gordon’s recipe book. A convert already. Flossie arrives and I make the introductions. David is delighted to learn that Flossie is a psychotherapist. I can see him mentally filing the information for future use.

I spy my new friend Martine the osteopath looking gorgeously glam, having lunch with a stylish gentleman in a suit. I wait until she has her mouth full of duck and noodle salad then march over and exclaim “Hi!” Martine nearly spits the squirmy duck noodles all over her lap. She’s my kind of girl.

After another slap-up meal Flossie skips off back to her work counselling the anxious, confused, drug addled and fearful ones. In other words, people like you and me. As an alternative to psychotherapy David and I stock up on chocolate éclairs from Paul, next door.

***

Cara greets me with a big welcoming smile and a thermometer. She marches me over to the scales. 66.9 kilos! It’s the most I’ve ever weighed in my life. I’ve gained a kilo since last week. Maybe I should restrict myself to half a bar of Green & Black’s per day.

The chemo nurses are short-staffed today, only nurse Bess and Sister Lottie are on duty (nurse Cara is not fully qualified to give chemo yet). I resolve to be good and not drive them mad with my inane nail varnish discussions, wig tips and frozen pea schemes. Besides, David is here so I can inflict that all on him. We settle into the chairs. Sister Lottie inserts the cannula and we’re off. The first drip is an antihistamine. It makes me quite drowsy. Knowing that there will be a temporary lull in the conversation I pull out a pile of magazines from the side table and pass David a copy of Period Living. “Is this a magazine about how to cope with Pre-Menstrual Tension?” asks David. I’d forgotten that his sense of humour is more appalling than mine.

The man with the tracheotomy smiles and gives me a little wave. Suffering a life-threatening illness can make a person very forgiving. The man in the surgical smock is packing his briefcase. Sister Lottie goes over to him. “Ok we’re just going to start your chemo, so that will take an hour and a half.” “But I thought we’d finished,” protests the man. “I don’t know what gave you that idea. We’ve still got to do your chemo and then a flush. I said five o’clock remember?” We all look at the clock. The big hand is pointing straight up and the little hand is on the three. “I know you said five o’clock but I thought you’d changed your mind,” says the man, in a glum tone.

David and I discuss when we should eat the chocolate éclairs. Now or in five minutes time? “Well, by the time you’ve made us a cup of tea it will be five minutes from now,” I observe.

“What will you do,” asks David, “when the chemo is finished and you can’t come here and then go to The Providores for lunch every week?” For a moment I’m crestfallen. Then I cheer up. “After the chemo I’ll be having radiotherapy. So I can come here and go to the Providores every day.”

Sandra arrives. Hallelujah! I’ve said before that the treatment I am receiving privately is no better or different to the treatment I would receive on the NHS. All the consultants that I see also work at St Mary’s. I’m glad that is the case, it’s as it should be. I would not want to live in a land where private medicine was superior to that available to all – in fact that is the main reason that I would never want to live in the USA. A society that does not provide decent, universal healthcare cannot truly be regarded as civilised. In fact, I know from my previous experience of serious illness, in the most acute circumstances the care available in the NHS is far superior to that offered in the private sector. When it comes to the really bad stuff, the NHS is the only way to go. I got health insurance because I am a freelancer and terrified of being out of work for any longer than absolutely necessary. Having treatment privately is like having it in business class. The queues are shorter, the seats are more comfortable and they throw in a few treats to make it as pleasant as possible. Like Sandra. Sandra is a reflexologist employed by the hospital to take some of the stress out of having chemotherapy. She starts massaging my feet with a heavenly scented cream containing geranium, rose and bergamot oils. It’s by Tisserand. I drift off into a cloud of bliss.

Jamie arrives looking all tanned and relaxed following his holiday in Malaysia with Muttiah. I don’t remember if I’ve told you before, Jamie is an actor. He prides himself on keeping his instrument in tip-top condition. He has recently been cast in a play. I will give you the details before it starts. “And what do you do?” Jamie asks David. I forgot to tell you, David is a fabulous painter. He tells us about a series of portraits he is working on of people with their dogs. “Oh, you should paint Chilli with Iris,” I say. “No,” says Jamie, “you should paint me with Hugo.” “You’d like Chilli,” say I. “Chili,” Jamie rejoins, “is something of a moth-eaten, mangy old cur, whilst my Hugo is a fine, magnificent prince of a dog.” “That sounds like a pretty convincing testimonial", says David. “For Chilli,” I riposte.

David leaves and Jamie settles into his chair. It’s ok doing chemo on my own. The nurses are great company. But I do love having my friends with me.

The surgical smock guy has started kicking off again. It is five to five and his flush is still dripping. “You have five minutes,” he informs Sister Lottie, “you can stop this now.” “If I don’t do this properly and you have an allergic reaction I will bar you from leaving this hospital,” she says in a stern tone. “I’m Australian so don’t mess with me,” she waves an arm in my direction, “she’s Australian too, so you definitely won’t get out of here,” not taking into account that I’m hooked up to a chemo machine. Nurse Bess joins in, “we’re all Australian here,” she tells him, in case he hasn’t got the message. He grumbles on in a subdued fashion. I feel like shouting “keep your shirt on,” just to rub salt in the wound. But I refrain.

At last it is home time. Sister Lottie unplugs me and then with big cheery smiles, all the nurses wave us off, “see you next week Lily. Bring more lovely visitors.” “The nurses here are so nice,” I remark. “They’re utterly gorgeous,” Jamie replies. He’s got it about right.

***

Before I leave the building, Honoria the breast care nurse calls me down to see Suzy Cleator. I had told her yesterday that I’ve started to experience some numbness in my fingers. It’s peripheral neuropathy - a known side effect of the Taxol. Or it might be caused by blogging all hours of the day and night.

Jamie and I take a seat in the waiting room and I pass the time playing spot the wig.

Suzy Cleator welcomes me. Both she and Honoria are more noticeably pregnant every time I see them. Which is as it should be. Suzy looks at me. “I don’t want you to have permanent nerve damage in your fingers,” she says. “Neither do I,” I agree. “I think we will reduce your dose,” she says. “So, will I have to have more sessions?” I ask, a little disappointed by the prospect. “No, she replies, we’ll just reduce the dose for your last three sessions.” “Will that mean that the chemo is less effective?” I ask. If I’m having the damned chemo I want to make sure that it works. “No,” says Suzy, it works just as well.” Anticipating my next question: “so why didn’t you give me a lower dose in the first place?” she swiftly expands on the subject: “Side effects are a good indication of how well or badly your body is metabolising the chemo. If the side effects continue for a long time, it is a sign that you are metabolising it slowly, so it is staying in your system for longer and doing its work more effectively. Some oncologists increase the dose until the patient experiences side-effects.” I am grateful that Suzy is not one of those oncologists.

Chilli

It Aint Easy Being a Style Icon

Today is chemo day. Before I hit the hospital I pop into the wonderful Providores on Marylebone High Street. It’s just as well to get some really good food on board in case I feel sick later on.

The downstairs café is ram-jammed as usual. I sit at the high bench. There is a blonde woman sitting diagonally opposite. As I read the menu she picks up her coffee and her cutlery and moves to sit directly opposite me. “I’ll move here,” she says “and leave that seat for someone else.” I shoot her a hostile glance. But it turns out she’s not a nutter, just a Kiwi. I soon find out that Martine is an Osteopath in Harley Street. As she observes, one of the nice things about The Providores, apart from the delicious food, is that it’s full of friendly Antipodeans. Martine and I have a lot in common. Well, not that much really. We’re both from the southern hemisphere and we’ve both lived in London for decades. Apart from that, she’s a medical professional and I’m a patient, she’s divorced with three kids and I’m single with no kids, she’s blonde and I’m brunette - today. Anyway, I enjoy chatting with her. When she leaves I tell her that I hope to see her there again. And mean it.

***

“Your haemoglobin is quite low,” says nurse Bess. “What does that mean?” I ask. “It means you’d better eat a lot of red meat and green leafy vegetables, things with iron in them to get your levels up. It might work.” “And what if it doesn’t?” “If your haemoglobin gets any lower you will have to have a blood transfusion.” “Oh.” That shut me up. The possibility of serious chemo side effects suddenly seems real. I tell her that the vein in my forearm, where they regularly put the cannulas, has gone hard and is hurting. “That’s called sclerosis,” she says “it will get better eventually. Meanwhile, we’ll have to find another one.”

It isn’t easy. Nurse Karen seems almost as distressed as I as she taps my arm here and there. At last she coaxes up a vein and inserts the needle. The various drugs start to flow.

I’ve come to Harley Street alone this week. Jamie is on holiday and I think that Iris and Antony have done their fair share of chemo-sitting. The trouble is I’m not very good at asking people to accompany me. Fear of rejection makes it difficult for me to invite friends to dinner or the movies. I can’t imagine anyone gladly volunteering to sit around all afternoon reading OK! and watching Taxol drip into my arm. Just then, May calls on the phone. We make a date for her to come with me to chemo next week. “Oh, that will be fun,” exclaims May. “It depends on your idea of fun” I muse.

Another sobering side-effects moment: as I doze off I overhear Nurse Bess talking with a neighbouring patient. “The doctor is concerned about your liver and kidney functions. We’re going to keep you in for a day or two.” It’s obviously Bess’s day to deliver the bad news to everybody. Next thing a porter appears with a wheelchair and whisks the neighbouring patient away.

I’ve had the anti-sickness drugs and the anti-allergy drugs and the various flushes. It’s time for the main event: the Taxol. Nurse Karen returns with the frozen peas that I’d prepared earlier. “Now, how are we going to do this?” she ponders. Then she ingeniously devises an impromptu pea administering system by binding the bags to my feet with surgical tape. “Did you used to be a model?” asks Karen. “Ah, erm, no” I reply. Karen shouts across to Bess: “She said no but she hesitated” I tell them the truth: that I did give it a go in my youth but I was hopeless, both at modelling and at being treated like a farm animal by vile hairdressers and narcissistic fashion designers. Once, in the past, I expressed regret to my cousin Ben “If only I’d done modelling, I’d be rich” I sighed. “Lily, you’d be dead.” he observed. I love the people who know me better than I know myself.

“I want to get a wig like yours” Karen enthuses “I’ll wear it on Hallowe’en with my catsuit, whip and gloves.” Now there’s a back handed compliment if ever I heard one but Karen doesn’t mean it that way at all. She chats blithely on: “I tried one on the other day. It is such a sexy look...” “I’m proud to be such a fashion icon for you.” I reply, glancing down at my pea-clad toes.

A Big Day - Part 2

It’s the first day of my new chemo regime. From now on I will be having Taxol every week for the next eight weeks. "Taxol" – sounds like a weed killer, doesn’t it?

Iris and I decide to get the bus to the hospital. In Oxford Street the traffic is properly gridlocked. After a long time of being stuck we go downstairs and ask the driver if he will let us off. I explain that I have a hospital appointment and that I am not feeling very well. “I’m not allowed to open the doors” is his flat reply. He doesn’t look at us.

Another 15 minutes passes, only now we’re standing up. It’s hot. Iris assesses the situation: “I simply don’t know what’s going to happen about the traffic in London. Every scheme they come up with just raises loads of revenue and does nothing to ease the congestion.” That seems pretty spot-on. I start to feel faint. What has been an inconvenience is spiralling into a crisis. I’m about to push the emergency door-opening button when the traffic breaks and we chug into the bus stop. I’m still not convinced that the driver wants to let us off but by now he is on the receiving end of so much customer-generated flak that he reluctantly releases his hostages.

At the hospital I collapse into one of the lazy boy recliners. Nurse Karen begins to insert the needle into my arm. Suddenly I begin to sob. “Hey darling, what’s the matter?” asks Karen. “I’ve had enough of this.”

***

After my mini-breakdown blows over I cheer myself up by eating a block of Green & Black's Organic Dark Mint Chocolate and modelling my new wigs for the nurses on the chemo unit. Then it’s downstairs for an appointment with my Consultant Oncologist, Suzy Cleator. Bad news. She explains the possible side effects of the Taxol: aches and pains; fatigue; nausea; mouth ulcers; anaemia; hair loss; diarrhoea; liver damage; numb hands and feet... But there's good news too: she also explains that the weekly regime that she is recommending for me is a new method from America, whereby one receives a lower dose, but more frequently. Apparently it means that the chemo is ‘better tolerated’. Well hallelujah to that!

Then some more good news: she will be recommending three weeks of radiotherapy rather than the five weeks that was originally discussed. It seems that there have been some studies done that conclude that three weeks is just as beneficial as five. Suzy will not be overseeing my radiotherapy. Her baby is due in November. But she will refer me to another consultant. “Someone very good” she says, reassuringly. I’ve no doubt about that but I’m sorry to hear it all the same. I feel safe with the understanding that develops with continuity in a relationship. I’ve started to feel at ease with Suzy and I trust her.

Then, as I get up to leave, she shoots me a parting morsel of bad news: another side effect of the Taxol is that it can make one’s nails go “manky”. Oh hell.