Wednesday, July 20, 2011

Let's play a game!

Well, enough of all that.

Had a nice few days, bought a bunch of needful stuff, new pj's and whatnot, to get ready for Chemo 2.

They were going to start me today, but having seen the results of some blood tests have decided to put it off for a week or so, to let my liver have a bit more time to recover. I'm taking liver-fixing drugs as well as a bunch of vitamins. Other than this everything's fine. Back to work in a limited way, which is really great.

Nice to have a week of reprieve so I can get some more cooking done and get things ready for Dorothy's visit and ... (fanfare) The Return of Sarah! (woop!)

Starting chemo 2 next Wednesday, if the blood tests come back favourably.

In the meantime, let's play a game.

Name the strangest place or circumstances you've ever had your confession heard.

Mine is on the steps of Canada's parliament in Ottawa.

Behind a plinth.

Oh, I almost forgot. I've also made confession in Latin at the Jesu in Rome. I had been told that there were always English speaking priests available at the Jesu, which is a conveniently located church in Rome (near a big bus stop). So I went in and sure enough there was a box near the entrance that had a sign on it saying "English" but when I asked the old chap in the box, he shook his head and said, "Mi dispiace". I went away annoyed, and then thought, wait, this is the Jesu and that's an ancient, retired Jesuit. No way he doesn't know how to do it in Latin. So I went back and asked and he looked a little startled, but said, in Italian, that we could try. I knelt down and riffled through my mental Latin files and we stumbled through on a halting combo of Latin, English, Italian and French. I got the gist across, he gave the ancient absolution formula. And "three Hail Mary's and one Our Father" is pretty easy to understand in any language.



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Friday, July 15, 2011

I am a jerk

Readers and friends,

I recognised so many of those names as they came into my inbox with donations. The 63 people who donated are people I've known personally for many years, people I've known through writing and blogging, people I've had heated arguments with in commboxes, people I've worked with, people you might have heard of, people I barely know and some I've never heard of until now. I'm astounded and humbled.

But I think perhaps I shouldn't be so surprised, and I'll get to that more below.

To let you know, in the last few days, donations have covered the airfare for two friends, one coming over from Scotland for the first half of August and the other all the way from Raleigh, North Carolina, to stay for the second half.

There is also enough left over after airfares that ancillary medical fees will be easily covered at least for the next month.

My reaction to this has been a little surprising. I'm embarrassed. I feel as though I have gravely and unjustly underestimated ... well, everyone really. I have given my friends and readers and everyone one else terribly short shrift. The experience has shown me that I have a pretty deep-seated set of assumptions about people and that a lot of them are simply wrong.

Some of you may know that I left home very young and have very little family. By the time I was thirty, I'd been fending for myself in the world for half my life. I am often reticent to talk about my personal life as you know. I've learned that it does not do to share too much. But some of you know some of the background, so you will understand when I say that I have, what a friend calls, "family of origin issues" (the acronym is pronounced "phooey"). This has left me, as it will, with a profound distrust of other people and the assumption that when the chips are really down, I can count on no one but myself.

The other evening, I was having a talk about this with a friend. I was watching my friends here booking flights to go back "home" for their annual summer exodus from Rome, a process that usually leaves me somewhat depressed. It highlights the fact that there isn't really a "home" for me to go to. For as long as I can remember, whenever I am having one of those conversations, and the question arises, "What do you really want, Hilary?" my gut-instinct answer, the one hidden underneath a lifetime of cynicism and carefully trained wit, the one I never say out loud, is that I want to go home. It's been the one thing I've wanted since I was fifteen, and it's the one thing that will never, ever happen.

This year, it made me more than depressed to watch all my local friends leaving; it made me frightened. I hadn't bargained on the cancer thing still going on so late in the year. I got the diagnosis on March 9 and things have dragged and dragged. There were weeks of waiting for test results and whatever else it is one waits for in a public healthcare system. I don't know really how it happened so slowly, but now that things are finally happening fast, it is the worst possible time and I was in a near panic that I would be facing the worst part of it alone.

Until now, I've had a whole team of people to take phone calls from non-English speaking doctors, and to arrange appointments, to deal with government red tape, to make runs to the pharmacy when I can't, and one at a time, each one of these people has either left or will be gone soon.

I am now going to share: those of my readers who are like me and find such things excruciatingly embarrassing, should avert your eyes.

I've mentioned before, I think, how my brain is evil. Well, one of the elaborate theories my Evil Brain has come up with, and refuses to drop, is that there are two classes of relationships between people. Primary relationships are the ones that incur the most duties on the people in them. For the most part, they are the ones you are born with: mother, father, brother, sister, children. These are the kinds of relationships that take priority in life. When it is a choice between duty to one of these and anything else, that relationship takes first place. The only primary relationship you can acquire without being born into it is marriage.

Secondary relationships are everything else. Friends, co-workers, colleagues, neighbours. With these, the duty is still there, but is not as strong. In a secondary relationship, you are bound to help when help is needed, but only so far as it does not interfere with other important things in life, with your duties to your family, say, or to work or school.

I don't have any primary relationships. My mother is dead, my father has been out of my life for decades; I'm an only child and so was my father, so there were no aunts, uncles or cousins. My mother was estranged from her family and I've never heard from any of them. Until I went back to England in 2008, I had not heard from my mother's foster family in Manchester since I was six.

I have been aware of this relationship hierarchy since I left home and was confronted with the reality of having no one in the world to really rely upon. It's a hard lesson to learn when you're a teenager, but at least in my case it was swift.

When I was fifteen, I took a bus from the arctic where I had been living with my mother and stepfather, back to Victoria. My father picked me up at the bus station. I stayed with him a week and then he told me we had an appointment with the family court. We went into a court room and my father told the judge that he didn't want to care for me and that I should be made a ward of the court. The papers were signed and I was taken from there to the first of a series of foster homes. I was a ward of the state until I was 19, then a social worker told me I had to get a job. I never heard from my father again.

I can imagine what you are thinking, having read this, and I'm right there with you (I can also hear a few of you saying, "It answers so many questions..."). But you might be surprised to hear that it did not occur to me until I was in my 30s that anything untoward had happened. It wasn't until I told it to a priest, who had been trained in psychology, and saw his reaction that I started to understand how appalling it was. At the time, I just accepted it and got on with surviving, which might have had something to do with my already well-developed familiarity with my father's character.

In the years since then, I have to admit that I have developed a set of emotional and psychological barriers to other people, that have shaped who I am and that would be very difficult to overcome. I can't assume that they are all bad, but there are ways in which they have hardened me.

All of which leads me back to the cancer crisis. This is really the first time that I've faced something with which I am actually not capable of dealing alone. This has, naturally, set up a kind of war between my ears. When the cancer thing started, my friends and helpers, co-workers and colleagues, readers and supporters, and a whole bunch of other people I've never met or heard of, all dove into the breach to help. Often without being asked. Despite this, my Evil Brain continues to insist that depending on another human being, particularly a group of humans, is at the very least, extremely unwise. It's a funny thing about habits of thought, as I'm sure any confessor will tell you, they powerfully resist the evidence of our senses.

I hardly know what to say at this stage. Everything I need to deal with this is in place. I suppose that my Evil Brain is more or less unkillable and I will continue to be "astounded" by people helping me. Maybe at some point, I'm going to give my friends the credit they deserve.

Until then, I hope y'all won't be offended by my surprise that you all are decent, kind, honourable and caring.

Sorry.

I'm really trying to be less of a jerk.

HJW



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Thursday, July 14, 2011

The Weather II

Dropped down to a balmy 26 today, nice breeze off the Med.

Lovely.


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Wednesday, July 13, 2011

The Weather

It's THIR-ty FIVE freaking degrees in Santa Marinella today!

Good thing I shaved my head, or I'd be wretched!

What a good idea that was!



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A conversation:

Me - "I don't want to go outside like this. I'll be all funny looking."

Christopher - "Yeah, and you'll have really short hair too."



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Important News

We interrupt our regularly scheduled litany of woes and horrors to bring you this important public service announcement.

They've found a new Leonardo!


Leonardo da Vinci's "Salvator Mundi"

An eerie painting of Christ holding a glass orb in one hand and making a benediction with the other, all the while leveling an otherworldly stare at the viewer, has been authenticated as a long-lost Leonardo da Vinci portrait, putting it "up there with any artistic discovery of the last 100 years," according to ARTnews. Called "Salvator Mundi" ("Savior of the World"), the painting will now go on view in a Leonardo show opening at London's National Gallery in November, and it is said to carry an asking price of $200 million.


Someone bought it at an estate sale in 1958 for £45. It is the first new Leonardo attribution since 1909 and one of only about 15 oils by him to have survived.

The painting was originally commissioned by Louis XII of France and completed in 1513. Somewhere along the line, it came to England as part of the collection of Charles I, but between 1763 and 1900, the painting's history is unknown and its attribution to Leonardo was forgotten.



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Monday, July 11, 2011

Blegging again



Alert readers will have noticed the re-appearance of the PayPal button on the top of the sidebar.

I have a big spiel about this. There's stuff that's been going on. Stuff I'm going to write about as soon as I can. Long, thoughtful post coming.

Meantime, suffice to explain for the moment that expenses have been well covered by the kind donations so far, but it turns out that we've got further to go than I had anticipated. It is working out that the whole procedure, if everything goes as I hope, will take me into late September/early October to be finally done.

I'm scheduled to be back in the hospital next Monday for the second cycle of chemotherapy. Then there is a long wait for recovery and then surgery, then recovery from surgery. In there somewhere, I have to get MRI and CT scans, blood tests and whatnot. Between expenses for drugs, user fees for scans and tests, transport and phone/transport, I'm looking at a lot of ongoing costs.

But there is actually something more pressing and important.

The big problem during the first two weeks after the first cycle of chemo was that I was alone and didn't have enough information or the right kind of medication.

I am pretty far out of Rome, and it is a big undertaking to come out here for most of my friends who are still here. The other problem is that most everyone I know is either gone or at the busiest time of their work year. This is the height of tourist season and most people I know here work in the tourist trade.

For the last round of chemo, we were given only one day's notice before I went into the hospital, which made it impossible for people to change their work schedules to be with me. I did all the preparation I could, shopping, cleaning, cooking, laundry-ing and organising as much as possible in the 24 hours they gave me. But there was nothing at all to be done about finding someone who could be here with me. The side effects of the drugs were a lot worse than we had been led to expect, and we simply could not find anyone who was able to come out here and stay.

The doctors had not warned us about the possible side effects of chemo, and when I developed peripheral neuropathy, and the pain and paralysis that went with it, I had no idea what was happening and really could not cope. It was difficult to reach anyone to talk to at the Gemelli, I was unable to get out of the house to go see a doctor locally and I could not get prescriptions or even to the emergency room (which is one town over) by myself. It turns out I had not been give the right kind of pain medication for neuropathy, a condition that is notoriously resistant to regular painkillers and that left me unable to walk unassisted.

The upshot was that for the first, and by far the worst, week of recovery (and among the worst weeks of my adult life) I spent most of my time alone, in pain and, frankly, terrified.

The doctor told me that the second round of chemo will be worse than the first, since the effect of the drugs, particularly the neural damage, is cumulative. It takes months for nerves to heal and there are only three weeks between cycles. This means that I am going to be in worse shape after the second round than I was the first time and will take longer to recover.

The trouble is that this is the very worst time of year to be doing this. All the people I know leave Italy starting in June, and by the time I'm out of hospital after the second cycle, there really isn't going to be anyone around.

A friend has found a voluntary organisation, based in a town close to me, that helps cancer patients with home helps, rides, nursing, information and various kinds of support. This will be a big help and I've already got a ride to the Gemelli on Monday with a hope of some help at home. But what I really need is someone, anyone really, who is able to be here during the first couple of weeks.

This leads me to the gist of the PayPal button. I have a friend who wants to come and stay to help me during recovery. Sarah was my roommate here, but had to go back to the US unexpectedly in February, a little less than a week before all this started. This might sound an odd thing to ask, but we could really use a little help with her air fare. She is the only person I know who is not either married and looking after a husband or family, or completely snowed under with work or schoolin', who is willing to come all the way here to help. We are hoping to find a reasonable flight for the early part of August.

It seems funny to me that the loss of my hair should have so failed to upset me. But this may be because I have now got a keen sense of just how dangerous and debilitating chemo is: nerve damage, kidney damage, liver damage, debilitating pain and paralysis, all help to put an extra-short haircut into perspective.

Christopher has chastised me for being all stiff-upper-lip, stoic-British, and failing to "clearly articluate my needs" to the people who care about me. And a few days ago, Kathy Shaidle, who has had Lupus, warned me not to try too hard to be the "brave little sick girl" all the time.

So I'm gritting my teeth and asking for help. To be honest, I'm really scared about next week. What I have already experienced, and what I expect to go through, has broken down the barriers. The last round was, frankly, terrible and facing it mostly by myself was one of the worst things I've ever had to endure.

I realise times are difficult for a lot of people, and I don't want to diminish the help I've already received, both from my good readers and from my friends here, but I could really use some company in the next few weeks and months.

Thanks.

Hilary


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Update:

Once again I am deeply moved by the generosity of my readers and friends. Thank you everyone.

I've been asked to put up a little note about the currency and donating from different countries. When you log in, if you are not doing so from Canada, you have to click the thing saying what country you are in. It's in the upper-right-hand side of the PayPal home screen. My Paypal account is set up to receive Canadian funds. I'm not entirely sure how it works, but I think you can donate in any currency and Paypal will automatically turn it into Cdn with an appropriate exchange rate. That's what happened last time. People sent in funds in three currencies and it was automatically all worked out by Paypal.


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Update to the update:

Here are Steve T's very helpful instructions.

Right. I'm the chap who requested the PayPal update. Clicked on Hilary's donate button again today, and it's differnet than yesterday.

Here's the proper instructions on using PayPal to toss some cash to Hilary if you aren't Canadian:

1) Click on her donate button.
2) Her Paypal page will come up, with the email she uses for PayPal transactions. (I am not reproducing it here for fear of the dreaded spambot finding it and using it to barrage her with spam at this inconvenient hour.)
3) Copy the email she uses for PayPal transactions.
4) Close that page.
5) Call up the PayPal appropriate for your country:

Canada: https://www.paypal.ca/
U.K.: https://www.paypal.co.uk/uk
U.S.A.: https://www.paypal.com/

6) Make a payment through your country's PayPal system, using the email address you copied from Hilary's PayPal site. (Be sure to use that one, her contact email on her blog is quite different.)

PayPal will do its magic behind the scenes and convert your currency into Euros.

If you are actually in a country that uses Euros, the process is the same: get her transaction email, go to your local PayPal, and proceed.

ADDENDUM: if one goes to the U.S. site, https://www.paypal.com/, there one will find the thingie (i.e., the drop-down list) that will allow one to select their own country. Merely click on the words "English (United States)."

NOTE: one must actually be surfing from a country from the U.S. for this to appear. (There are terribly geeky things such as cookies that control this.)

CORRIGENDUM: "one must actually be surfing from a country from the U.S. for this to appear"

Please mentally replace the word from with the words other than. Thank you.



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How to keep cool when it's hot


First: shave your head. Seriously, this is the best idea I've ever had. At exactly the same moment my hair started falling out, the temperature shot up into our annual Italian Summer-on-Venus range. It's been in the low thirties for five days and no end in sight.

Second: get a cotton bandanna and soak it in water, and stick it on your now wonderfully unburdened head.

Third: enjoy the glorious coolth.

You can also make iced tea.

My friend Andrea the Artist came to spend the weekend with me and when she saw me running my normal 3pm programming, putting the kettle on and getting out the tea, she looked at me like I was mad. "You're making tea in the hottest part of the day in the hottest part of the year?"

Realising that what I was doing was, in fact, insane, I changed tack. Fortunately, she had brought me a lovely present; a brand new silicone ice tray that makes 32 nice big cubes at a time. (For the non-ex-pats: Italians, though they complain about the heat as much as the rest of us, are terrified of anything cold. They don't have air conditioning, they don't like to use fans, and they're really REALLY not into ice. You can't buy bags of ice at the grocery store, you can't get ice in your drinks and it is very difficult to get a decent ice cube tray. They'll sell these dumb little tidgy plastic trays that make ten tiny ice cubes at a time that melt in the glass in about five seconds. So having an ice cube tray that actually makes proper ice is a big deal.)

Hilary's iced tea method:

Take

one full ball of Twining's loose Darjeeling
one bag of horrible Tetley's
one lemon, sliced
two sprigs of new mint from the balcony
about a tablespoon of sugar
filtered water.

Make about half a pot of tea. Toss in the Tetley's for strengthening. While the tea is steeping, score the lemon with the tip of a knife to release the lemon oil in the skin then slice it crosswise nice and thick. Put the lemon slices and the mint sprigs into the nice Italian ceramic jug that you bought last year at Porta Portese but haven't found much use for yet. Add sugar and about 1/2 litre of cold water from the filter jug. When the tea is steeped very strong, pour it still hot into the jug. The cool water will help prevent the jug from cracking. Stir to dissolve the sugar and spread the lemon and mint flavours around. Pour in a little more cool water to cool the rest of it. When it's luke warm, add ice and put in the fridge for about half an hour.

Drink.



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Sunday, July 10, 2011

Elf n' Safety?

Went for an evening stroll last night to the beach promenade. They have a sort of market there on summer weekends where you can buy things like antiques (or possibly "antiques"), sun hats, scarves, beach wear, jewelery, second hand books and random stuff. Mostly people stroll up and down in the warm, humid air, eat ice cream, chat with neighbours and tourists, listen to the waves on the beach competing with the music playing from the Gigi bar. My friend Andrea and I went down there last night after dinner. I bought another hat and she bought some "hand painted" traditional Italian crockery.

While I was trying on a hat, squinting myopically into a mirror, she said, "Do you see that?"

I have broken my glasses, so I had not at first noticed the procession that was moving past the market stroll on the Via Aurelia. A horde of young kids, teenagers, all rollerblading up the street, decked out in brightly coloured spandex clothes and safety helmets carrying lit tiki torches.

I laughed. "Only in Italy. In Britain, 'elf n' safety would be having apoplexy."

There's a lot to love about this country.



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Saturday, July 09, 2011

My hair...

...a retrospective.
November 2010

March 8, the day before diagnosis.

May 2011


June 2011

Today



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You know Google Earth?

Well, now

Google Mars!

Oh man, science! Just when you thought it couldn't get any cooler!


I just downloaded Google Earth 5.0 and thought this would be an appropriate intro



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