Done

Last update:
Just got the report back from the cellular test:

No significant intraepithelial lesions or malignancy
Presence of normal microbial flora. No sign of significant cellular alteration.

So, that's that.

Well...

What now?

~ * ~ * ~

I'm done. This week the doctors finally told me that (apart from a cellular test that we haven't got the results for yet) all the tests and scans have shown that I'm in the clear.

For the first time in almost exactly a year, (diagnosis was March 9, 2011) I have nothing cancer-related to think about and no doctor appointments at all for two whole months. It's really over, for now. I have follow-ups every two months for three years, then every four months for two more. If I get to the end of that, statistically speaking, I'm considered "cured". Five years.

They were slightly worried for a time about an inflamed lymph node in my left hip, but it seems that this was not malignant but only a result of the banging around I got during surgery.

I thought I'd break radio silence once more to relate the good news, and to thank everyone here for the help, the donations, the prayers, the emails, the books and the general support and friendliness. It sounds a cliche, but I really mean it when I say that it made a lot of difference.

But I have a lot to think about, so intend to continue to be scarce for a while.

The whole experience has not been without heavy costs, and I don't mean only monetary. I'm changed. My outlook on the world has changed. And I am not sure now exactly where to go from here. I find I'm slightly frightened at the prospect of indefinite living. I spent the last year seriously preparing for the possibility that I would die and now that this has receded back to its normal remote corner of probability, I find I am at something of a loss.

Not having cancer, not having anything to fear, is turning out to be quite a difficult thing to adjust to.

I was very surprised to find that I fell into a deep depression shortly after receiving the news in January that the histology report had come back clean after surgery. It seemed terribly abrupt, as though I had been trapped in a runaway rail car for a year, concentrating with all my strength on not panicking, and now it had suddenly slammed to a halt. The silence and stillness are deafening and strange.

For a year, every day, I had to remind myself very strictly not to make plans or even entertain thoughts about the future. I've learned the trick of shutting down whole trains of thought: "Stop. Don't think about that." What I was doing with my life, where it was going, what the future held, were all topics that were off limits because every time they came up, there was the big, terrifying sign post in front of it all that said, "You might be dead".

Of course, maintaining strictly disciplined control every day of one's thoughts, hopes and dreams about the future for a full year is tiring work. And it had the odd result of making the past much more present in my mind. I've also spent the last year thinking very hard about what I have done up to this point. The question, what are you going to say to your Maker when you meet Him has been prominent.

I have since recovered somewhat from depression, but it is prowling around the edges of my awareness like a dark predatory thing, waiting for a chance to come back. The sudden attacks can be shocking and frightening. Of course the abrupt cessation of much of my normal hormonal function has not helped, and the treatment for that was only started four days ago, and has not really started to work yet. The doctor said it will probably help.

I have read that post-treatment depression is very common for cancer patients, though as yet little discussed in the medical literature. There are a few places in the US where these issues are dealt with for patients who are in recovery, but this awareness has not yet made it over here. The articles and research studies I found said that it is actually a mild form of post-traumatic stress, which makes sense. You spend a long time in a terrifying battle for you life, against an enemy that is at once alien and horrifying and profoundly personal and intimate, and all the while, normal life, daily activities, even normal thought patterns have to be suspended. There are illness, weakness, nausea, pain, terrifying surgeries and losses.

At the end, if you have survived, you are damaged, reduced and in many cases physically mutilated. Deeply and permanently changed, with prospects for the future that are different from what you had imagined before cancer, almost as though it has made you into a different person, someone you don't know. And when it is all over, you feel bereft. The doctors have waved good-bye and you feel almost abandoned.

For a year, I've had my thoughts and actions, every waking moment, tightly focused and oriented towards this one thing. Now that it's over, I almost don't remember what I was doing or thinking. And even if I do start piecing it all back together, there is no way I can go back to the same old me. Everything from now on is going to be new.

So, I'm going to stay quiet for a while, for which Lent seems like an appropriate time.

See y'all at Easter.

HJW



~

Hopes and dreams

So, about the future...

Y'all know that the cancer business has led me to seriously re-assess my life and work. The conclusions I've come to are pretty positive. For the first time in my life I have no questions at all about whether I am doing the right things or going in the right direction. The question that cancer really raises though, is what next. The answer seems to be not a change, but more. More work. More art. More learning. More getting to know people and the world and understanding them. And doing this through art and writing.

Even before cancer, just having moved to Italy raised many of these kinds of questions. Every morning I still wake up and spend a minute or so remembering where I am and being amazed. A place this beautiful and important just makes it imperative that you live a life worthy of being here.

Just last night we said farewell to my lovely friend Vicky who came here in October to look after me (we thought the surgery would be way sooner) and is on her way home now to Vancouver to start a fabulous career as a film maker. I have more or less achieved basic physical functioning, can get in and out of bed by myself, dress, make tea and walk around the apartment. I'm not allowed to lift anything heavier than the tea pot for the first two months and can't do my own shopping at all. But I can take little walks down to the seaside and can certainly sit up at the computer and at the easel for a few hours at a time, so I think the time is near, barring further bad news from the oncologists, to get back into a regular pattern of work, at least a bit.

I am going to get the staples (!!) taken out this week, and they will tell me the results of the histological examination of the tissue some time in the next ten days or so. If the news is not what we hope for, I suppose we will have to carry on with more chemotherapy or something. I asked a couple of times "what if" and each time the answer was ambiguous. "I don't know" was the clearest I got, but someone did mention possible chemo.

I think the next histology report is going to be the crucial thing. If it shows no sign of cancer in the margins, the supposedly "clean" area around the tainted organs, then I'll probably be OK.

But if there are more cancer cells in the place where there shouldn't be then I think the long-term prognosis won't be very good. Individual cells eventually form tumours but until they do you can't detect them with scans. Right now they have already taken out more or less all the organs that I can survive without, so after this there won't be any more surgery possible. The cancer has already shown itself to be "chemo-resistant" so I think the idea is that more chemo will only stave it off for a while. How long is anyone's guess.

For myself, I am still hopeful, but there is still the issue of my intuition. I just can't shake the feeling, that seems to be turning into a certainty in my mind, that I will die of this disease. So, though I know that I will be utterly crushed if the news is bad, I will not be at all surprised, as I was not surprised at all by the initial diagnosis all the way back in March.

With all this Doom n' Gloom worst-case-scenario in mind, however, I wanted to run an idea past y'all. Vicky told me about this website that people use to raise funds for their various arty-farty projects and ideas called Kickstarter. You do a sort of pitch video and tell people what your brilliant idea is and you just plainly ask for money. You give a target goal and there is a time limit for people to donate. People have asked for start-up funds to do everything from making traditional tomato chutney to building a giant animatronic snake. One project that impressed me was this one to create a rolling photostudio to revive the use of traditional film photography.

And you can really get a lot of dosh out of it. This guy, for example, was one of the big lotto winners. He asked for 500 bucks and ended up with over $77,000. Though of course, there is no telling which project will strike the fancy of readers.

I've been all over the site and it seems that there is very little there about doing anything remotely "traditional" in art in the sense that I mean it. In fact, it seems geared towards more of the "innovative" modernist stuff that I've spent my life fighting. But there is certainly a sense in which a return to Classical Realism in art is at the very cutting edge of avant garde these days, as being interested in the Trditional Mass is in the Church. So long-lost and forgotten is the skill of realist drawing that it seems like a rediscovery of ancient alchemy or magic. Besides, nearly anything goes in our weird times, and I think perhaps if it were pitched that way my idea would get some attention.

My idea simply is, as soon as my health will allow, to start studying as close to full time as I can manage, which, given work commitments, probably means a 3-hour class a day, five days a week. This will cost about $10,000 (Cn) per year. I hope to divide my time evenly between the studio and work. That's the first part anyway. In the long run, like a couple of years from now, stage two is to teach and help Andrea expand the Rome school. In the long-long-long run, the third stage, should I ever get there, is to buy a place in the country in Umbria and open a live-in school. If I were to die having done all or most of this, I'll be pretty content.

Studying art for me is part and parcel of the work I've been doing for the last decade or more: to rescue Western Civilisation from the barbarians who have nearly destroyed it. To be a traditionalist painter, to start saying in painting what I've been saying in words, is a goal I think I can achieve (assuming there's time) and will, I hope, be the "other half" of the work I've been doing to advance the cause of The Real in the face of a universal capitulation to an evil and disordered Fantasy. I have said before that I greatly value the chance to do the work I do and to get better at it, but that it seems incomplete to me. (It could be worse, I could have a bee in my bonnet about studying poetry! I shudder.)

In the second phase, my hope is to teach other people what I've learned. I can't tell you how annoying it is when someone says, "Wow, that's amazing! I can't draw a straight line. You must have natural talent." The idea that drawing is some kind of magic trick that only people with the special Harry-Potter drawing gene can do is as widespread as it is irritating. (I can't draw a straight line either. No one can because there is no such thing in nature. In fact, I'm hereby banning the expression from the blog.) Back before they abolished education drawing was a normal part of everyone's upbringing. It is about as magical as learning to read Latin and was tossed out of the curriculum for more or less the same reasons.

When Andrea was studying at the Florence Academy she was recruited as a drawing instructor while still studying. She also worked at normal joe-jobs most of her time in training. She really does embody the kind of discipline to which I aspire.

I have no desire whatever to pick up stakes and move to Florence, mostly because I'm not interested in tearing apart my happy little life. I intend to keep doing what I am doing, but to do a lot more of it all. To continue to write out against the evils of our times on LSN. For those who worry that I am thinking of quitting, it is very far from my mind. The thing that cancer has taught me is that I really want to live, completely and fully, and for me, life simply can't be lived without writing. But it is like trying to live on only one kind of food. Eventually the craving for more protein or potassium or vitamin C becomes overwhelming.

If the cancer news is good, we are nearing the end of the ordeal. I think the time has come to make some plans for the possible future.



~

Rabbit Hole

Honestly, a lot of the last few days has been a bit of a haze.

As of this week, I have done everything that could be done to combat this cancer and tomorrow it is likely that I will be going home to await the outcome of our efforts. When I asked what would happen if the tissue removed showed signs of more cancer, I got no answer. I think they don't know beyond a vague, "more treatments". It seems that combating cancer is very much a matter of navigating on instruments without a map. The cancer tells you which are the best guesses, and you go in whatever direction the tissue samples indicate. No way of knowing ahead of time which way we're going.

On Wednesday evening, I had a long talk with one of the doctors here who had gone to some considerable effort to translate and type out a large document into English setting out all the possible ramifications of the proposed surgery, short and long term. I read it very thoroughly and asked a lot of questions and the beautiful young doctor with the charming Italian/Australian accent sat with me going through everything inch by inch. But by this time, I only wanted information so as to be forewarned. The decision to go forward was already set by then, but until about lunchtime on Wednesday afternoon, it had been nothing like a foregone conclusion. And I balked.

We had arrived around noon, and had been shown to my room where an elderly lady lay in the other bed surrounded by her relatives. I hung up my coat and sat on the plastic chair looking blindly out the window, waiting for the doctor. The now-familiar routines were followed with paperwork, blood test, tagging... but I could see the wall coming up fast and I was finally certain that I could not get over it this time.

By two pm my nose was pressing up against it and I cracked. I told my friend that I did not want to do the trade. It just wasn't a good enough deal. They would not conduct this horror on me just for a roll of the dice that might or might not result in a few more years of the same life I'd already had enough of a dozen times over.

"If all it's going to be is more of this, and in that condition, then no." I got up, heading for the nurse's station: "I'll just go tell them I'm going home."

I had my coat on and was pulling on my shoes, throwing things into my bag, trying to stay calm enough to explain that no, I would not, could not do this horrifying thing.

How could I trade who and what I am at so deep a level for something as cheap and lousy as a few more years? Why should I go to such lengths to extend a life that has rarely failed to disappoint? What could I possibly imagine I could still hope to have out of it at this stage?

It has been, shall we say, a strange few days and much of it spent in a cloud of morphine-induced confusion and on Saturday evening an unexpected and frightening reaction to one of the other pain drugs. But now that it is over, I have come to a kind of island of quiet. Not peace, exactly, but at least quiet, enough to wait through, because now we have to wait again.

What did I learn about myself in this odd, dream-like week? I learned that I almost fear life more than death by cancer. Which I think is not uncommon for people of our time.

Somewhere in the middle of all the haze and confusion, I remember taking a phone call. On Saturday afternoon, I commented that I was looking forward to lunch because the Gemelli does pretty good fish for lunch on Fridays. I had lost a whole day, but during that dream-sequence Friday, another odd thing occurred.

I really have little clear memory of the day after Thursday's surgery. I know I lay still, having been tucked by my friend carefully around with soft pillows to keep me from moving in the night. I looked up to see the nurse approaching with a cordless telephone held out towards me. She said something in Italian that I was certainly in no condition to understand. All I heard was "Canada". Were my employers calling to see how I was doing? I took the phone and a crackly old-fashioned operator's voice said in Italian, "Wait please for an international connection," and the next voice I heard was my father's.

I don't remember much of what I said. He asked me how long it had been since we talked and I think I said, "About 30 years." He told me that he was sorry and that he hoped I would get better and would I let him know how things went. He said he has prostate cancer. I remember asking what stage and he said, "Intermediate". He's being prepared for chemotherapy in the spring and is "optimistic". He asked me how long I'd lived in Italy, and what was I doing and was I enjoying it?

It was not long before I could no longer make any sense and the nurse standing over me could see that I was distressed. I told my father that I could not talk now but that I would send him a note telling him the outcome of the surgery. I can't remember what he said after that, but the nurse took the phone gently away and said many things in Italian that I understood even without knowing the words. "It was my father. It has been thirty years." She looked shocked, but stroked my head and told me not to cry. "Tranquila, tranquila..."

Indeed, with a fresh eight-inch abdominal incision I could barely speak; even breathing was painful. I lay there trying to remember his face listening to the faint sound of a newborn wailing briefly in the obstetrics ward one floor above us. The week between Christmas and New Year's is a quiet one in hospitals, and in the place of the usual boisterous Italian familial bustle was an uncommon stillness in the halls and rooms.

This week my past and future and present all seem to have crowded into the little double room to tell me things.

It's a good thing this was a slow week for sickies, because I think the drama was too much for my roommate who asked to be moved to a spare bed in another room. Perhaps she was offended that I had asked for a screen. It is not the Italian custom to erect privacy curtains between beds and when an Italian friend visited, she explained and the nurses had kindly found a portable screen. I'm sure they didn't fully understand my strange Anglo/Canadian need to not watch or be watched by strangers in vulnerable medical and emotional moments.

So, here I am, maybe even cancer-free, who knows? Maybe with 30 or 40 years ahead. Or maybe more chemo and a short time to sort out my affairs. My English relatives have gently scolded me for not calling more frequently, and have been calling every evening.

I was surprised to find I was able to get out of bed by Saturday morning, to be able to walk that day with a friend on either side ten or twenty yards down the hall and back, and twice today unassisted, though very slowly, to the cafeteria and back to the ward. I am reminded how grand it is to be able to get to the bathroom by myself, and to stand up straight and to walk to the little balcony for a breath of fresh December air. Even pain is not entirely unwelcome; it comes from the real world.

Today a shock-haired Friar in bare feet and sandals and a brown habit brought me Holy Communion and said he would do it again tomorrow. Hospitals are dull places but we entertained ourselves. While I darned socks and the elbows of my cardigan, Vicky and I learned how to gamble a starship with Corbomite and sailed through the Gothic into the early Renaissance with Lord Clark for an episode and a half of Civilization. We figured out how to make un-melt-able cups for hot Darjeeling by cutting off the bottoms of Schweppes grapefruit soda bottles with Vicky's Swiss Army knife.

And now, we just have to wait to see what will happen next. Tomorrow, having found that most of my plumbing is in basic working order, they will be letting me go home and I will spend the next several months recovering and figuring out what all this means. They have removed all the organs that they think could have been infested with cancer cells and now those are to be examined cell-by-cell in the lab and

The surgery I've just had is thought to be the best possible option for my stage and type of cancer and the numbers for it are very good for total cure, about 85-95%. We will know in "twenty days".

This afternoon, I switched on my computer and found a YouTube video of some monks singing the Te Deum and, because it is the Feast of Mary Mother of God, prayed for the Plenary Indulgence because this week I decided to try to keep living.



~

Today

Surgery done.

It was very hard.

I didn't run away from the hospital at the last moment, but it was a close thing. Very close. When it came down to the wire, I felt like an animal backed into a corner of a cage. Only the knowledge that not going through with it would badly hurt others forced me through the barrier.

I think I'm going to be taking a break from blogging for a while. This has changed a lot of things for me, and I'm no longer completely sure who and what I am. Difficult to have anything to say to other people from that position.

Thank you again to everyone who prayed.

We will not know if cancer is over for another few weeks. When we have the verdict from the histology, I will post the results.

If the news is bad, I think I will be done with both blogging and treatment.



~

Tomorrow

In hospital from 10 am tomorrow until I don't know when. I won't be available for visiting or much of anything for some time to come.

It is possible that news will be posted on Facebook.



~

Intuition

Another pic that comes from the wonderful Underpaintings site.

I want to start this post with a disclaimer. I'm not sure what we make of ideas like "intuition" as Catholics, but right up front, I want to make it clear that I don't believe in ESP or any of that quasi-occult/parapsychological stuff. I think somehow intuition is a real thing, though. I think sometimes God will give you a little hint about some things sometimes, for His own reasons that even those who are given these little hints don't know.

I know my stepfather Graham knew without a doubt that he would die young, and he did indeed die at 48. For many years, at least since my early 20s, I have had an equal conviction that I would die of cancer. I don't claim to have any sort of divinely inspired knowledge, but it's there very firmly and has never gone away. When I was diagnosed, I was horrified and almost blind with fear, but not surprised.

Yesterday, we a very comprehensive and fruitful meeting with one of the Gemelli's oncologists and things are settled for surgery to be booked in the week between Christmas and New Year's. Which is next week, now that I think of it. I got to ask all my questions and have, I hope, cleared up the communication problem by getting the cell phone number of the doctor who speaks English.

She was very surprised to hear that I had been left alone with no followup after chemo and said that this is certainly not normal practice. There was some speculation that this was the fault of the oncology secretary who does not speak more than two words of English and who therefore may have been avoiding dealing with me, a common Italian habit.

Nevertheless, things are cleared up for the moment. I got the doctor to fax my medical records to my GP here in Santa Marinella, got her assurance that I can call or text her with questions or problems any time. I also now have a back-up oncologist now who works in Civitavecchia who answers his phone, speaks English and has agreed to help if there are problems. So we hope that the difficulties with communication and support will be cleared up.

But the gist of what she told me was not very encouraging and it has set me thinking about things. As we know, the last surgery showed that there were still cancerous cells in the area around the tissue they removed. the chemotherapy was only partially successful, with the tumour reduced in size but not as much as they had hoped and the cells still active. This means we have to go ahead with the large surgery. I will have all my reproductive organs out next week and they will be sent to the lab for more detailed examination. They are hoping that there will be no more evidence of cancer in the margins but there will be no way of knowing anything until they've taken it all out and had a look cell by cell.

If the cancer has spread into the organs past the uterus or in the lymph nodes in the parametrium, I will be facing more "procedures," whatever they may be. But this isn't so hopeful, because they weren't expecting to find cancer in the margins from the last surgery, and yet, there they were.

There is no way to tell without surgical removal of the suspect tissue whether the cancer has spread into other organs and systems. Micrometastases are too small to be detected by scans and can easily be missed by biopsies. In fact, they can only be found by removal of entire organs. I asked if there was a chance that there were micrometastases hiding anywhere else, and she admitted that the possiblity certainly exists. The only way that scans can tell is after the tiny single cells have started dividing and growing tumours and there is no predicting when or where that will happen.

The surgery back in May showed there were no cancer cells in the lymph nodes around the affected area and the PET scan I had showed that the metabolic activity surrounding the tumour is reduced since chemotherapy. Chemo's effects last for some time, (as I am reminded daily) so it is likely that the cancer is not developing or developing very fast. The doctor said it was "probably" safe to wait until after Christmas but said it would be unwise to leave the surgery any longer.

If there is cancer found in the margins after this surgery, the only thing left to do for the time being is more chemotherapy or radiotherapy. The cancer, however, has already shown itself to be chemo-resistant so if this surgery doesn't remove it entirely, there isn't a great deal they can do but dose me and wait for it to emerge somewhere else. Or not, as the case may be. If the cancer spreads to organs that I can't live without, there is only chemo, and as we have seen, there is only so much that can be expected of that.

Truth to tell, I am becoming less and less confident as we go along. Each time they have told me that the initial signs are positive, the actual examination has shown things to be worse than they had hoped.

A friend of mine has said "it's just fear" but I disagree. It is certainly an idea that I'm afraid of, but the idea itself was there first. I can't help thinking that I'm on a path to the end of my life.

For the first year after I was here, I was under the impression that I had been brought here by God to start a new happy life, possibly with marriage in the offing. But even then, I remember thinking that maybe it was not that I was here to start a nice new life, but to get myself safely to the end of the old one.

From the start, I never really thought of any plans to leave Italy. There has never been any exit strategy or end-date to my stay here, and no pressing reason to ever go anywhere else. And despite its infamous aggravations, this country is growing on me. It has taken me a while to get to the realisation, but I have no intention of ever leaving as long as it remains possible for me to live here legally.

I don't know when I started thinking I would probably die here, but it was fairly soon after I came. Really, it is hard to imagine a better place to do that and to live the last part of life. Beautiful Italy, by the seaside, surrounded with friends and upheld by the Church in a Catholic country.



~

A prayer

Learned this week that I'm still sick. Really sick.

Tried to get back to life a bit and go to art class this week but just couldn't manage it. Andrea's studio, in an important and historic 16th century building close to the Piazza del Popolo is also at the bottom of a kind of transit sink hole. The easiest and fastest way to get there is to take the train to San Pietro station and either hoof it across the Big Piazza and cross the river on the Ponte Cavour, or you can take a bus from the stazione down the hill, past the big dome and over the river and walk through the little windey streets from the bus loop near the Angel bridge.

Either way its a good brisk 20 or 30 minute walk, and invariably no matter how cool the weather is I am drenched with sweat and out of breath by the time I get there. I usually have a little ten-minute sit-down on the studio terrace and a glass of water before starting and am OK, but this Monday I just couldn't get untired. But since Andrea is going away for a few months and this will be the last chance I get for a while, I thought it would be silly to just turn around and go home again.

Besides, I'd brought my computer with me and had the ambition to go to the office and get some work done after class. It's been so long since I've had a normal day, I just really wanted a smidgen of my regular life. But it didn't work out.

In class, we stand in front of the easel about two arms lengths away and the technique involves taking a measurement from that distance and then walking the step or two forward to make the mark on the paper. Classes are three hours and it can be pretty tiring. By the end of it, I usually am pretty happy to sit down at my desk for the rest of the day.

But this week it really became clear how much the chemo has taken out of me. It looks too as if the poison drugs have damaged my ovaries, and I've been having rather severe symptoms of premature menopause. This means a constant undulation: hot/cold/hot/cold/hot/cold. Overwhelming heat, sweat pouring off me, red faced and panting and five minutes later shivering and chilled. This amusing routine going on about three or four times an hour, 24 hours a day. The preamble of nausea, dizziness and heart palpitations lets me know when one is coming on. Stress brings it on and as you may imagine, it makes it rather harder than usual to concentrate.

The neuropathy is aggravated by being tired and by the end of two hours of class, my feet were on fire, with pain spreading up my legs. The pain of neuropathy is multifaceted, and a big part of it is the feeling that one's toes and fingers are swelling up and getting ready to explode. When it's bad, touching anything hard, like turning a key in a lock or winding a clock, feels like your fingers have a "funny bone" in them, all the nerves cringe together as though getting an electric shock. Some days holding the pencil is a bit of work by itself.

Despite all this, and despite it making me a little cranky and ill-humoured, I got to the end of class, but was a bit of a wreck. After, I had to do a couple of little chores, cutting up some large sheets of paper so I could get them home in my folder. But before doing that, I ran out to the farmacia to buy some paracetomol, known in the US as extra strength Tylenol, to back up the drugs that were obviously not up to the task that day. We're still working on adjusting the new pain meds, with too much turning me into a zombie and too little leaving me in pain by mid afternoon. It works pretty well if I'm not doing too much in the day. And some days, for no particular reason the whole thing just flares up. The doctor said if the meds stop working too soon, I can back them up with paracetomol, but it doesn't work terribly well.

When I was getting ready to go home, Andrea said, "So, on a scale of one to ten, how much pain are you in?" About six, maybe six and a half. Not screaming agony by any means, but bad enough to make everything no fun at all.

Bit of a mess, is the long and the short of it and this week it all kind of came to a head.

So Monday afternoon, I was done in by two o'clock and just had to go home. Hot/cold flashes every fifteen minutes notwithstanding, I was falling asleep on the train and went to bed more or less instantly after getting home. On Tuesday morning, it really hit me just how sick I'd got. Up only for a few hours in the morning for a cup of tea; back to bed by two-thirty. Up for a while in the evening, and me n' Vick watched the Fellowship of the Ring. Had some dinner and went back to bed. When you're spaced out and sick, in pain and on narcotic meds, the day just sort of floats by in a kind of weird droopy haze.

A day in bed, though, did me a world of good and this morning I had enough perk to go to the doctor and report that things are really not going terribly well. The good news is that my local GP is really terrific and has been a huge support in all this awfulness. He is setting me up with an oncologist who speaks English and will be able to tell me what's going on. I can get the Gemelli to give him my medical records and he can explain things and keep a closer eye on me and my doings than the staff at the hospital can. Obviously I should have done this months ago, but I was mostly expecting to be starting to recover by now. I'm only just now learning that chemo often doesn't work that way, new symptoms and side effects can appear months and sometimes even years after the last cycle is over. Something I'd have known about if the Gemelli doctors were as interested in keeping me informed as they are in doctoring me... it's been a bit of a bone of contention so far.

My appointment this morning did a lot to put my mind at ease. Things are going to get worked out. The things that are happening now are debilitating and awful, but not life threatening and can be treated successfully. They're going to go away and be under control. Things are going to get worked out.

I left the doctor's office and walked out into the late morning sunshine. In early December it's a beautiful warm, breezy autumnal day, absolutely perfect. Cool air, warm sun, nice little breeze off the sea bringing in sweet damp that's just like home. The autumn rains that started this year quite late, in November, have given us our annual "second spring," with all the grass that goes brown and sere in our ferocious summers, coming up again green and soft, flowers nodding over the tops of garden walls, happy children kicking the soccer ball around in the school yard.

I came out of the office and was still woozy and wobbly, but quite a bit mended and didn't want to go straight home. I took a slow walk up the Via Aurelia, the Roman road that runs through the centro of S. Marinella, and ended up going down to the castle and the marina. There's a promontory there, where, on a clear day, with your back to the old Odescalchi castle, you can see nearly all the way down to Rome, with the other castle at Santa Severa gleaming in the sun, a stern old fortress warding off marauding Saracen pirates.

Behind the castle, that is built on top of the foundations of a Roman senator's country villa, there is another little beach, hidden from the great running of the Rome tourists in the summer, with patches of black volcanic sand, big bulges of sandstone coming out of the ground all weathered into undulating Art Nouveau shapes, and logs to lean your back against. Just like home. This beach is on a little cove and is sheltered from the wind and only a few beautiful white neoclassical villas nestling in the shrubbery and trees on the hill.

I sat down on the sand and turned my face into the breeze and just breathed. It felt like the first time in days.

I'm scheduled to have surgery next week. I am hoping to get a consultation with this new oncologist before then. I know the Gemelli doctors know what they're doing and I'm pretty confident that the surgery will be the end of the cancer. I am also growing in confidence that the difficulties the surgery will create can be dealt with.

Things are pretty hopeful, but I've been terribly afraid. Cancer is unpredictable, and no one can possibly say for sure if all this is going to work. The news about the micrometastases in the margins after the last surgery has really shaken me. I'm deeply frightened by the thought that this might mean the cancer is anywhere and there is no way to tell until it is too late.

I've been praying for a lot of things but, and this might surprise you, I have yet to simply ask to be delivered from cancer. For the treatment to work.

I walked along this little hidden beach and finally knew that I really wanted to live. At least for a few more years.

"Lord, I'd just like to ask if I can please get past this and live for a while longer. I am OK with it if you have other plans, but I'd just like to get it out there.

"Things are really nice right now, and maybe for the first time. I've got such good work, and such nice friends and I've finally figured out for the most part how to get on in life. And honestly, I'd really just like to enjoy it for a bit, if that's OK.

"I think I can handle the long term consequences of the surgery and still have a bit of a nice life. I don't even mind if things are a little reduced in scale from now on. I can deal with living a little smaller and a little slower. But I think I've got a chance to be happy for a while and I'd like to try it."

I've been getting a lot of messages via email and Facebook in response to my last few Meaning of Life posts and I'd like to let y'all know that it has actually been really helpful, so thanks. I know that a great many of you have been praying (some have even paid money to get large numbers of other people to pray too, entire convents of nuns) so I thought I'd let you know that I'm getting to a sort of peace with the whole thing.

Don't get me wrong; I certainly have my little screeching moments of mindless panic, but they're fewer, shorter and easier to stop now, even without the application of the frying pan to the head. It might surprise some to know that the whole cancer experience has in many ways been beneficial. As a news writer, I know how important a deadline can be to your productivity. The saints and famous spiritual writers always say the same thing: keep your eye fixed on the reality of death. And cancer certainly has a way of making that impossible to avoid.

I'm finding my way through it. Maybe in a somewhat muddled and inefficient way, but I'm getting there and it is in no small part due to the support I've had from friends, readers and colleagues.

Thanks.

Again.



~

Dear well-meaning people out there in internet land:

if you, your sister, your mother or any other person you know have had a hysterectomy or any related surgery, please don't tell me about it. It may seem awful, but I really don't want to know. Please don't tell me how horrible it was, how painful it was. Please don't tell me how long it took to recover or the huge dramatic life changes that came as a result. Please don't tell me you know how I'm feeling. It mostly just makes me freak out more.

And please, unless you actually know me in real life, not just in your imagination from having read my blog or articles, please, PLEASE don't offer to come to my house to help me through it. This includes people I've communicated with exclusively through email. If you think you know me because I've responded to a couple of emails, I need you to understand that we are not fast friends. I know you mean to be helpful, but it really just comes across as weird and slightly creepy. (If you think this is aimed at you alone, you're wrong. I've received several such offers.)

Sorry, but the list of people I want this kind of help from is extremely short. It might seem from the blog that I'm really all peachycheery but this is not the case.

OK?

I know you mean well, but your sharing is really not having a very good result.

So, just hold back, OK?



~

Decisions... decisions

I've decided to get another cat. Well, a kitten, really. I think you can get them pretty easily from the cat shelter at Torre Argentina. It's for Winnie. I'm starting to really worry that she's bored and lonely and doesn't have enough cat-things to do.

When I first got her, about four years ago now, I think she had been exclusively an indoor cat. We lived in my little cottage in Tattenhall and even though the place was tiny, and I left the kitchen door open a lot, she wouldn't go outside. She would sort of sidle up to the door and put her little nose out for a minute, then run back into the cottage. It was a big deal the day she went outside for a few minutes. After a while she would go outside pretty regularly through the bathroom window. She would run around on the rooftops and then back. She never stayed out at night.

Then we moved to Italy and we got a place with a really huge wrap-around terrace and she was pretty happy to go out on the terrace. Then we had a flat for a year that had a garden and she loved it. She would go out every day and prowl around the wood pile and chase the big grasshoppers in the garden. Sometimes she would just sit in the sun in the flowerbeds. I was vaguely worried she'd meet with the wrong end of a scorpion, but that never happened. After a while she got into a big thing with the local feral cat. The Mean Cat we called him. He would bully her and she started being scared to go out. One night the Mean Cat actually came into the flat and beat her up. While I was there! I had to chase it out. I think this really upset her and she would only go out when I was there in the garden digging.

Now we live in this really nice flat, but it's a story up from the garden and she can't go out. I've taken her on supervised visits to the garden a couple of times and she seemed to like it, but I'm afraid to let her out into the garden alone because it would be quite hard for her to ask to get let back in. The street outside is also quite busy, more than she is used to, and I'm really afraid that if she went out she would get hit by a car.

Sometimes she likes to go into the stairwell and run up and down the stairs, but she's pretty dumb and the floors look all the same, so she sometimes mistakes the upstairs apartment for ours and sits outside the wrong door yowling to get let in. Then I have to go rescue her.

But she's really looking quite lassitudinous; I think she sleeps too much, even for a cat, and she spends too much time trying to get my attention. She needs someone to play with who's more her own size. Someone fun and energetic to beat up on and boss around. For a while, I thought I should get her some mice, just let them loose in the apartment so she can have something fun to chase and then kill, but it turns out it's pretty hard to buy live mice. Don't know why.

I thought an adult cat would just be too much for her, since she's been an only-cat for so long. So, it's a kitten.

Also, I've decided to get a total hysterectomy to get rid of the cancer once and for all.

We tried really hard to keep all the important and useful bits in there, but it turns out that I have a "chemo-resistant" tumour and there were micrometasteses in the margins, which means the entire aparatus could be infected. The doctor said there was a 2 per cent chance that there were micrometasteses in the ovaries, but that there was really no way to test for this. The only way to know whether there was cancer there would be to wait until they developed tumours, by which time I'd be in pretty big trouble. I consulted my nice English-speaking GP and he said that with the flu or something, 2 per cent is no big deal, but it's way too big a risk with a disease that will kill me. WAY.

They said I could have radio-chemotherapy but this would (probably) have the same effect ie: premature menopause, anyway. Frankly, I didn't really even bother looking up the possible side effects of radiotherapy. It just seemed obvious that the only way to be as close as possible to absolutely sure is surgery.

So, life is about to change, permanently. I was really hoping that I would be able to deal with the cancer and have things go back more or less to the way it was before, but that hope is over.

So are a lot of other hopes.

But that's the way life goes.

More later on my Third Decision, which you guys might be able to help me with.

Now, I'm going to the beach to sit around and look at the water.



~

A lot going on

There's a lot. I've had the consultation with the doctors. The news isn't good, but it isn't as bad as it could have been and there are still things we can do to make the whole thing (possibly) go away. I can't really go into it more right now, but I thought I'd let y'all know straight up that things are still hopeful but the cancer is still there.

The chances that the next thing we do will make my cancer entirely a thing of the past are in the high 90s, but, well, things are still complicated for the moment.

But for now, I have a difficult decision to make. I've been given a few options, none of which are particularly appealing. Once I've decided what I'm going to do, it's still going to be difficult to live with and will change a lot of things more or less for the rest of my life. So, stick around, I'll go into it more as we go along.

At the moment, however, I'm actually just a bit pressed for time and for some rather unexciting, mundane reasons. I've got a doctor's appointment in the City this afternoon for more information, Q&A sort of thing, and I would have been back to you all before now but the internet at the flat died for about 30 hours. Fixed now, but we've got to run off to do more doctor-related things.

So, I'll get back to you.

Sorry, I realise now all that was kind of cryptic. But I'm in the process of making some pretty big life decisions and am trying to make them based entirely on rational and sensible things. The effort is leaving me somewhat muddled.

In the head.

You know.

Anyway, once all that is sorted out, I'll be back and we can have some tea. I might bring biscuits.



~

First piece of bad news since the diagnosis

I'm afraid plan A has failed.

I'm sorry to say that surgery was not successful. The cancer remains in the "margins" and that I will now have to go on to the next step. Consultation on Monday to see what that will be, whether radiotherapy or surgery.

No comments please.

H

Scanned

Went to Civitavecchia this evening to get the first of a series of scans, Magnetic Resonance Imaging. CT is next week, then PET at the Gemelli.

Am suddenly filled with dread and visions of horrifying worst case scenarios are dancing before my eyes.



~

Me me, me me-me me...

as our friend Gregory likes to say.

My home internet is causing trouble, so there may be fewer posts for a while. Dunno what's wrong. (What do I look like, some kind of computer geek?) I'm trying to get the Telecom Italia guy to come fix it. Running for now on my mobile internet stick, but not sure it has more than a couple of hours left on it.

In the meantime, I just thought I'd throw out a little health update since people are asking.

We're at Chemo III + 11, and I'm getting better much faster than expected. I am out of the wheelchair at home and walking about the flat without difficulty, and even made it to the shop and back the other day. Last night managed to get in a little swim in the evening followed by a burger at the pub after. Big night out!

Nausea is over, pain is mostly under control, though I'm guzzling down the maximum allowable dose of a fairly powerful painkiller and probably will for a while yet. The neuropathy is a bit worse than last time, my feet and fingers are numb and if I miss a dose of painkiller or am late with it, I hear about it right quick. But it isn't getting any worse and there isn't going to be any more chemo, so the nerves will now be able to start healing. They're only worried about my liver, so I'm still taking a bunch of liver-fixing drugs. I'm sure it will like me again soon. I've even still got most of my eyelashes.

I seem to be doing this weird thing of having an Up Day full of energy, followed by a day of total somnolence. It's kind of like a mini bi-polar disorder.

On an Up Day, I accomplish amazing, superheroic feats of normality: walking more than two blocks without resting! Doing laundry! Cleaning the bathroom! Cooking dinner! etc. On these days I invariably think, "Whoopee! I'm all better! Time to get back to work and do lots of stuff!!! Woot!"

Then I start chanting "Normal-life! Normal-Life! Normal-Life!"

The difficulty comes the next day. The Sleepy Day.

Last week I had two Up Days in a row and of course, thought, "Hey, I'd sure love to go into Rome for Mass this Sunday. It's been ages and I feel great!"

Sunday, as it happens, was a Sleepy Day however. Fortunately, my loyal friend decided that it would be best to take the wheelchair and was willing to show up at my place and push me around all day. It turned out to be a very smart idea. Slept on the train into the City, drifted off to visit the mermaids during the Mass, was a zombie at lunch and slept again all the way home on the train-o. Got home, and zonked out on the sofa for five hours, got up, had something to eat and was out for the night by ten.

So, my body will continue tricking me, I guess. I had my little Up Day yesterday, even went to the beach-o (yes, I know the Italian: spiaggia, OK?) and had a little splash about. Went to Monkeys pub after for a hamburger and a Coke and walked home after with no trouble.

For which I am now paying.

Anyway, things are going pretty well, over all. Better than expected, in fact. I've been inundated with people emailing and saying they're praying and having Thoughts for me. I've been overwhelmed with people coming over and helping during the period when I really couldn't get out of bed at all. There hasn't been a moment when I've needed help and it hasn't been there. So things are good. The weather is even being fairly cooperative.

I am REALLY looking forward to getting back to Normal Life, but the Up/Down thing might be going on for a while I suppose.

Now we have to wait to see if the chemo has had the desired effect. I am scheduled for another MRI/CT scan on Thursday, and for a PET scan some time soon. Whether the tumour has shrunk or not, I will be having surgery in a month or so, when my immune system is back up and running.

Then, at last, it should be over for the most part.



~

Hilary in the hospital

...


No, not really. But LAWKS!! it was no fun.

Feeling a bit more normal and human, however, now that everything I eat and drink no longer tastes like chemo-drugs.

Happy to have so many extremely high-quality friends.

More later.



~

Busy

No posts for a few days boys and girls.

Busy.

UPDATE:
Close of day two. I've had one batch of cytotoxins, with two more to go. The really nasty one, Taxol or Paclitaxel, is for tomorrow morning, but there has been a complication and things have not gone as easily as hoped.

On the first cycle, it was determined that I have "difficult" veins. They poked around in the back of my hand and arm five times to try to get an IV in there but failed (with lots of lovely bruises to show for it) so it was decided that I would have a PICC line. At first, I think they expected not to do a third cycle of chemo, so it was assumed that the PICC would only have to be in place for a month, which is the normal limit. But it has been there now for over two months, and this extension has probably added to the problem.

The first day is always a whole load of saline solution mixed with anti-histamines, vitamins, minerals and various drugs to protect my insides while the vicious cytotoxins go in later and start destroying every fast-growing cell in my body. If I just had the chemo drugs alone, I would be having liver and kidney failure and might have a violent reaction to the drugs, which can result in seizures or coma. So they are very careful, filling you up with anti-emetics and other protective things.

But the inflammation, with some pain, started about half way through the prophylactic stage. I had an ultrasound to rule out veinous thrombosis, but by the time I'd finished it the first cytotoxin, Cisplatin, was causing a lot of pain and some of it refusing to go in but dripping out, soaking the bandage and running down my arm...and these are some pretty expensive drugs!

They're worried about having the same problem with the Taxol, which is extremely toxic, so much that you are not supposed to get any of it on your skin. So they're getting a PICC specialist to see me tomorrow. It seems that my veins are just tired of having all that tubing stuck up them and then having all these toxic chemicals poured in on top. Understandable, I think. I feel the same way.

So there we are. That was the first two days. If all goes well, I'll be here for another day and a half, more if there are more problems. Keep your fingers crossed (if you're a pagan. If you're a Christian, I suppose you could pray.)

Feeling OK in general though, in my head at least, but somewhat delicate. I explained that I didn't want any dinner by roughly saying, "eating is vomiting," "mangiare e vomitare," which is terrible Italian but seemed to get the message across. They have me on a drug that is meant to protect my brain from the chemo so it's kind of important. It was being given in the form of a big tablet that dissolved in water which you drink, (a big fave of Italians with all sorts of drugs) but after two today, I had to tell them that if I had one more, it was going to bounce out of my stomach like it was hitting a trampoline. We've switched to shots instead and I've discovered that pain is greatly to be preferred to nausea. Pain is small, localised and short-lived. Nausea takes over your whole world.

Played cards all afternoon, re-learning after about 30 years how to play Gin Rummy. Got pants whipped by a slip of a girl.

More later.

UPDATE 2:

Well, they came in this morning and said the PICC just isn't working any more and gave me a new IV in my left arm, which is now more or less immobilised. Can't bend the elbow more than an inch or two (so am typing with one hand). That will keep things going for the morning, but before they start the next batch of cytotoxins, I have to have a new PICC line installed surgically, a rather unpleasant but short procedure that will make the rest of thing go much more smoothly.


UPDATE 3:

Home. All tubes removed.

V. v. sick, but home.

Home is best.



~

No one is paying any attention to anything I'm saying

I thought I made it clear.

I don't want to go to the hospital.

I don't want to go to the hospital.

I. Don't. Want. To. Go. To. The. HOSPITAL!

...

Why isn't anyone listening?


UPDATE:

Aaaaaand right on cue...my fridge died last night.



~

Bloody hell

Four more days.

No wonder I can't sleep.



~

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



~

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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My hair...

...a retrospective.
November 2010

March 8, the day before diagnosis.

May 2011


June 2011

Today



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