An Avalanche of Assistance

I have spent most of my time and energy today dealing with wonderful offers of help from all my friends. I may have to employ a full-time secretary to field their calls and emails.

Justin drops by to help me eat lunch.

He brings a huge bunch of bright yellow chrysanthemums. There is nothing in this world more guaranteed to cheer me up than flowers.

A Hat for Yoga

For several weeks I’ve been thinking about going back to my yoga class. But I’m afraid. I don’t really know of what. That it will hurt? That it will be too difficult? That I will fall over and look foolish?

Yesterday as Iris and I loaded up our trolley at Sainsbury’s, Siobhan my yoga teacher appeared in the ‘fruits’ section. She was really pleased to see me, as I was to see her. “Lily, how lovely to see you,” she said. “I’m coming to class tomorrow,” I blurted before Iris could stamp on my foot. I’m a great believer in synchronicity. I took that encounter as a sign.

A consideration... I can’t stand on my head wearing a wig. So what kind of headgear does one wear to yoga? A turban would be the right look, but would it stay on? The crocheted snoods are too chunky. They might dig in to one’s scalp. A scarf may be too slippy. My Terry towelling sleeping cap seems to be the right choice.

So, this morning I set off to yoga class at Innergy. I was the only person who turned up for the class. It got better. As I extracted my purse from my handbag, Siobhan held up her hand and said “This one’s on me.” I am continually delighted by how incredibly generous everybody has been whilst I’ve been ill.

Yoga didn’t hurt. Some of it was too difficult but I just did what I could. I fell over and looked foolish and we laughed our heads off.

Now I’m on the lookout for a yoga hat.

Watering Cans at Dawn

At 7.30 a.m. I am awoken by a text:

Are u up yet? I want to come over and water the plants.

Jamie has been my friend for a number of years and, until this minute, I have never known him to be out of bed before midday.

Full of beans and acting as if he springs joyously into life every morning at the crack of dawn, Jamie bustles around with the watering can whilst I stagger about in the bathroom. Once I’ve managed to struggle into clean clothes and apply make-up, Jamie has made tea. He squints a professional eye at me. “If you’re not going to wear mascara you should put some smudgy dark shadow along your eyelids.” I nip back into the bathroom and try it. He’s right, you know.

We All Need Somebody

I’m starting to feel very fatigued. So much so that it’s quite hard to do everyday things. With that comes a sense of helplessness and defeat that leads to the kind petulant outburst that I had on Sunday.

But I hate asking friends for help. I don’t like to think that I will put them on the spot and then they will have to say ‘yes’ out of a sense of shame. I like even less to think that they may say ‘no’ and then I will feel crushed and rejected. So I’ve come up with a cunning plan that I think gives everyone a get out. If you’re feeling overwhelmed I suggest you try this yourself:

From: Canalily

To: Flossie, Iris, Sheldon, Seraphina, Justin, Tessa, Jamie, Pete

Subject: Help needed

Hello friends,

I have reached a stage in the treatment where the chemo is starting to make me extremely fatigued so I'm spending a lot of time on the couch. You know how much I hate to ask but I could really do with some help doing a few things.

I need to fill in a form for the benefits people, that involves going through my files and finding information. Also need to do some filing and general plant watering, laundry and shopping.

If you have any time this week, your help will be gratefully appreciated.

Love

Lily

I don’t expect to receive a reply before this evening so fall back into bed and doze for an hour.

On arising I find the following in my inbox:

From: Iris

To: Canalily

Subject: Re: Help needed

Chilli and I will be over when I have had a bath x

The next thing I know there’s a welcome rap and a yap yap yap at the door.

C15th Chemo Chic!

I decide not to wear mascara today. Nearly all my eyelashes have fallen out now. Painting two or three odd lashes here and there just looks silly. To make matters worse, I’ve lost more on the right eye than on the left. So applying mascara creates a somewhat Clockwork Orange effect.

I find that my eyebrows look more natural when filled in with light coloured powder and a soft brush. I just touch the brush very lightly along the brow line. An eyebrow pencil makes a harsher mark. When there are not many hairs to blend it into it creates a hard line that looks phoney.

Once there was a time when having no brows or lashes was all the rage.

Rogier van der Weyden c.1435 Lady wearing a Gauze Headdress

Rogier van der Weyden 1455 Portrait of a Lady

Portrait of Mary of Burgundy C15

New Shoes Please

One of the more peculiar side effects of the chemotherapy is sore feet, particularly sore toes. To be more precise: peripheral neuropathy. It sounds trivial but I’m finding it extremely painful to walk in shoes. And, as of today, the season of flip-flops is definitely over.

What to do? A pair of comfortable yet glamorous flatties must be sought.

What do you think of these?

Or these?

Or these?

Or these?

One Might Hang Oneself If Only One Had the Energy Left to do So

There is no short or simple way to write this...

In order to qualify for a free wig I need a letter from the Department of Work and Pensions confirming that I am in receipt of income related benefit (whatever that may mean). After many phone calls; being put on hold; being told different things by different people and waiting days for somebody to call me back I turned to the Macmillan benefits helpline for help. I spoke to Jo, a benefits advisor. Jo spoke to the DWP. A young man at the DWP promised Jo that he would send me a letter confirming that I am receiving income related benefit. I, in turn, promised to present that letter to the surgical supplies department at St Mary’s hospital to prove to them my entitlement to the wig that I have already had.

That last bit was about two weeks ago.

For those of you who have just joined this blog – don’t ask. You’ll never understand the benefits system in a million years. I don’t understand it. The advisors at the Macmillan benefits helpline don’t understand it. Even the people at the DWP don’t understand their own rules and cannot give one a straight answer about anything.

I call the Macmillan benefits helpline again. This time I speak to Min. She listens to my long tale. “What does it say in the original letter that they sent you?” asks Min. I riffle through a very long letter. On page 4 it says “... We call this contribution-based and income related Employment and Support allowance.”

“I think that means you are on contributions-based benefit,” says Min. “Howd’you figure that out?” I ask, perplexed. “It says ‘contribution based and income related...’ Does that mean I’m getting both?” “No,” says Min, “it probably means you are getting contributions-based allowance.” “You might think that’s what it means Min,” I reply, “it is not clear to me, neither is it clear to the chap at the DWP to whom your colleague Jo spoke a couple of weeks ago. That chap promised to send a letter confirming that I am in receipt of income-based benefits. I have been waiting for that letter because I need to take it to St Mary’s to prove to them that I am entitled to a free wig.

“If you’ve paid your stamps then you would be receiving the contributions based benefit,” Min opines. “Does that mean I can get a free wig?” I ask. “No.” says Min, “you have to be on income-based benefit for that.” “So, because I have paid my stamps I am not entitled to a wig?” I ask. “Yes,” says Min. “Whereas if I had not paid my stamps I would be entitled to one?” “That’s right,” confirms Min.

I can tell that both Min and I are doing our best not to sob out loud at this point.

“Well,” says Min, “I will send you some HC1 forms to fill in so that you can claim a wig on the basis of low income in case you are in fact receiving contributions based benefits. “But I don’t want to fill in any more forms Min,” I say in a hopeless tone. “Are you receiving any help with your housing costs?” “No,” I reply, “I haven’t filled in the forms for mortgage relief because I have a great fear that the Abbey will penalise me for claiming benefits by offering me less favourable mortgage terms in the future. The repayments are very low at the moment so I thought I would borrow some money from my sister and just tough it out.” “But you have to be receiving help with your housing costs in order to establish that you are on a low income.” “But I have already established that I am on a low income. The DWP asked me to send them six months worth of bank statements and financial records. They know I’ve got no money,” I wail. “Yes, but getting help with your housing costs is the trigger,” says Min. “Min,” I plead, “do we have to go through all this hoop-la again? They already admitted to your colleague Jo that I am receiving income based benefit. Now we just need to get them to do what they promised and put it in writing.”

“I will call them,” offers Min. “Thank you Min,” I sigh, untying the rope from the shower rail.

***

The telephone rings: “Hello Miss Lily, this is Min.” I’m holding my breath. “The DWP are going to send you a letter confirming that you are receiving income related benefit.” I exhale. “And they are already paying your mortgage,” says Min. “No they’re not Min,” say I, “I haven’t filled out the forms.” “Well they are paying £18.29 per week towards your mortgage interest.” “But Min,” I protest, “my mortgage interest is more than £18.29 per week.”

“I will call them,” says Min.

***

Min calls: “Hello, Miss Lily. The DWP confirm that they are paying £18.29 towards your housing costs. I can’t tell you exactly what it’s for. Best you fill out those forms. You need to claim all your benefits when you’ve got cancer." Min is right. I have a deep fear of filling in forms. My loathing for bureaucracy and my shame at having to claim at all conspire to keep me half out of the system. I’m not claiming what I am entitled to. “I will Min,” I say, contrite.

“They also confirm that you are receiving £25.50 a week because you are in the Work Related Activity Group.” “And what does that mean?” I ask. “It means that they expect you to get a job.” “But Min,” I reason, “I’m sick. I have told them so. My doctor has written to them and told them that I am undergoing chemotherapy for breast cancer.” “Did your doctor state that the chemotherapy was intravenous?” asks Min. “She didn’t specify that it is intravenous. But, as far as I’m aware, all chemotherapy for breast cancer is intravenous.” “Nonetheless, you’ll have to get a letter stating that your chemotherapy is intravenous then write in and make an appeal.”

I don’t even know what to say anymore.

How to Promote Your Blog

My friend Madeleine comes over for lunch with a big bag of treats from Clarke’s on Kensington Church Street. David and Madeleine went to New York about fifteen years ago and stayed at the Chelsea Hotel. That’s as far as they got. They now occupy several apartments on the top floor of that venerable bohemian institution (or do I mean crazy old dump?) where David paints and Madeleine does various arts promotional things that I don’t fully understand.

We dine on red onion quiche, green lentils with lemon zest and watercress salad.

“You should get your blog on Oprah” says Madeleine.

Well yes, I suppose I should.

My, How You've Grown

While I’ve been sitting around feeling sorry for myself, my orchids have been getting on with their business. Their business is flowering and cheering the place up, at no cost.

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.”

I Must Protest

I don’t want to write Chemo Chic anymore. I don’t want to do chemotherapy. Or radiotherapy. Or any of this.

Everything Comes Around

From: Mum

Subject: Hat!

Portrait of an Unknown Lady by Lucas Cranach the elder c.1530

Diane von Furstenberg eat your heart out!

I Don’t Belieeeeve It!

After a long day of chemo, socialising, blogging and a lovely surprise I’m ready for bed.

Then this arrives:

From: Wahid Adada uhsc@batelco.com.bh

Subject: Charity Money

Date: 25 September 2009 01:37:46 BDT

Reply-To: wahidadada300@yahoo.co.jp

Dear Friend,

As you read this, I don't want you to feel sorry for

me, because, I believe everyone will die someday.

My name is MR Wahid Adada a Crude Oil merchant in IRAN,i

have been diagnosed with Esophageal cancer .

It has defiled all forms of medical treatment, and

right now I have only about a few months to live,

according to medical experts.

I have not particularly lived my life so well, as I

never really cared for anyone(not even myself)but my

business. Though I am very rich, I was never

generous, I was always hostile to people and only

focused on my business as that was the only thing I

cared for. But now I regret all this as I now know

that there is more to life than just wanting to have

or make all the money in the world.

I believe when God gives me a second chance to come

to this world I would live my life a different way

from how I have lived it. Now that God has called

me, I have willed and given most of my property

and assets to my immediate and extended family

members as well as a few close friends.

I want God to be merciful to me and accept my soul

so, I have decided to give alms to charity

organizations, as I want this to be one of the last

good deeds I do on earth. So far, I have distributed

money to some charity organizations in Austra, cameroun,

liberia,Algeria and Malaysia. Now that my health has

deteriorated so badly, I cannot do this myself

anymore. I once asked members of my family to close

one of my accounts and distribute the money which I have

there to charity organization in Bulgaria and

Pakistan, they refused and kept the money to

themselves. Hence, I do not trust them anymore, as

they seem not to be contended with what I have left

for them.

The last of my money which no one knows of is the

huge cash deposit of fifteen million dollars

$15,000,000,00 that I have with a finance/Security

Company abroad. I will want you to help me collect this

deposit and dispatched it to charity organizations.

I have set aside 10% for you and for your time.

God be with you.

MR Wahid Adada

I’m speechless. Even after I have exposed him in my blog for the faker that he is, he has the gall to approach me again. OK, so he’s used a different email address but his sneaky, wheedling letter is almost identical.

Does Mr Wahid Adada think I was born yesterday?

It's Turned Out Nice Again

When I get home there’s an email in my inbox from Nick.

From: Nick

Subject: Surprise

Attached is a flight itinerary from Sydney to London in Nick's name, arriving on the 22^nd of October.

I’m overjoyed.

As Iris always says: “It’s turned out nice again.”

A New Venture

It’s been such a big day I almost forgot to go to the opening party for Kell Skott’s new salon in Lambton Place. I swing by Westbourne Grove. Say hi and kissy-kissy to Kell and Jacqueline, knock back a cranberry juice with a couple of olives on the side and inspect the salon. It’s chic and gorgeous of course.

It must be scary opening a new salon in these tough times. If success has anything to do with humanity and all-round niceness, as well as hairdressing prowess then these two deserve it in buckets.

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