ADEGUATEZZA DEL CAMPIONE: Soddisfacente per la valutazione.
Non si evidenziano lesioni intraepiteliali maligne, Presenza di normale flora microbica vaginale. Non sl evidenz-iano significative alterazioni celfulari su base infiammatoria.
Ripetizione de11'esame: a giudlzio del ginecologo.
So, that's three sets of three months. Four years and two months left to go.
I sort of wish I were better at maths, because then I'd be able to figure out the ratio of time recurrence-free to the statistical chance of recurrence. I thought it would be fun to put a counter on the blog and watch the statistical chance of me dying horribly of cancer go down by increments, like one of those "____ days accident-free" you see on construction sites.
Maybe that would be slightly creepy though...
~
Yea, the sparrow hath found an house, and the swallow a nest for herself, where she may lay her young, even thine altars, O Lord of hosts, my King, and my God.
Showing posts with label Battle of Plataea. Show all posts
Showing posts with label Battle of Plataea. Show all posts
Friday, November 09, 2012
Sunday, April 08, 2012
In all thy works be mindful of thy last end
Tomorrow is a big day. Big changes are afoot.
Andrea has been away for four months in Australia, visiting family and running painting workshops. This time exactly coincided with the end of cancer for me. I had surgery at the end of December and have been convalescing since then.
A few weeks ago, I started a deliberate diet and exercise programme that I put together with the explicit purpose of building up my strength as quickly as possible to be ready for the next stage. Some time in February, I got back to work, more or less on the full pre-cancer schedule - albeit almost completely from home, with very little goings-out - and that has been going very well. I've been able to keep up well with what needs to be done, adding a little more every week. But now I need to move on, start getting more back into life in the outside world. The time has come for phase two.
And tomorrow is the day.
When I was diagnosed, one of the things that most filled me with fear was the idea that if I died, I would have left so many things undone, and so many necessary changes un-accomplished. Like everyone else, I suppose, I had a long list of "some-days". Some day, I would get around to doing my art classes more seriously, practicing every day. Some day, I would start picking up my Breviary and taking my prayer life more seriously. Some day, I would start taking my language study more seriously. Some day, any day now, I would get serious about my health and pay more careful attention to what I ate, and how much exercise I got. Some day I would go back to making all the clothes I've had swimming around in my head. Some day I would start taking advantage of living in Italy and go see stuff more often, get to know more people, get more into living here.
Some day I would do as much as I could, rather than as little as I could get away with.
Like everyone, I figured I could leave all this to some indefinite point in the future. I assumed that I would be living, if not forever, then very nearly so; at least, indefinitely and for a really long time. So the list languished, and there it might have remained if not for cancer, when suddenly it started to dawn on me that I might never get to do any of it. And if nothing else, there was going to be a long time when none of it was possible. It's one thing to procrastinate; entirely another to live with restrictions and disability.
The one thing that the last year has successfully drilled into my lazy head is that I'm not going to live forever. I don't have any idea if I will live a long or a short time, but either way, I know without a doubt that there is now a finite amount of time in which to accomplish the things I hope to accomplish, large and small.
It came home to me that if cancer was going to take me, there were a whole passel of things that absolutely had to be done, and a much larger list of things I really want to get done, none of which were now going to happen. I was weighted down with a terrible sense of failure and dread that this was all my life was going to amount to.
Now of course, I realise that a good part of this was the result of depressive thought patterns. I'm a big believer in the cognitive behaviour model of depression, that we have a set of habitual thoughts that drive down our mood and self-image. These thoughts are not an accurate reflection of The Real, and I have worked for many years, with admittedly limited success, to adjust my thinking, to force myself to accept what is actually real, and not the skewed ideas my Evil Brain comes up with to make me miserable.
But of course, the sense that I had not done enough with myself, had not accomplished a number of specific tasks, was real. There are certainly a lot of things I want to do, and one of the gifts that has come from the cancer experience is that I've learned what things are and are not important to me.
In all of this, it came clear to me how important the art is. I started taking lessons two years ago, and in the first year, I wasted much time. I didn't practice as much as I could have, and did not keep my class schedule steady. Took lots of breaks, skipped portions of time. I had started when I was going through a difficult period, and I did it mostly because it made me feel better. Those three-hour sessions of quiet and peace in the studio calmed and focused me like nothing else ever has. The lesssons made it possible to keep working steadily, even under terrible emotional and mental stress, and kept my life pointed forward and outward, away from myself and my unhappiness, in a way that I think nothing else could have.
But it was not until the diagnosis that I realised I very much wanted a future in painting. It was not until that possible future looked as though it might be closed that I started understanding how much I wanted it. I don't know how long it will take. I don't have any idea at this stage whether I will be able to succeed as an artist, even if I do have the time. But the idea that I could have the chance to try taken away filled me with grief. Much more than I had expected.
When you're having terrifying and debilitating medical treatments, with an uncertain outcome and when your life is in the balance, you tend to think a lot of Big Thoughts. And one of the biggest was what I was going to do if the treatment was successful. I was aware all along that even if the cancer was defeated this time, there was always a chance that it would return. So when it was finally over, when I got the call in January, and the confirmation in March, that there was no more cancer, I was still acutely aware that the clock is ticking.
One of the big things in Catholic spiritual writing is the notion of the Memento Mori. The words the priest says (or used to say) over you when you are getting ashed on Ash Wednessay: "Remember man that thou art dust, and unto dust thou shalt return." The great spiritual writers of the Church have always known that it is very harmful to forget that time is limited. There really isn't a Some Day. There's only a This Day.
A few weeks before the diagnosis, way back in January 2011 while I was starting to have truly alarming symptoms but before I had said anything to anyone, I drew a little sketch of a skull, the skull that appears in Caravaggio's painting of St. Jerome that hangs in the Borghese Palace. And as I was drawing it, the thought came to me, "Stay alive until you die. Don't die until you're dead."
These thoughts coalesced into a plan. Everyone with a serious illness does this. We make a Big Plan for what we're going to do, the way we are going to live after successful treatment. When health returns, we are going to live the way we were always supposed to, not looking back, but making as much as possible of the here and now. I suppose, though absolutely everyone goes through some variation on this theme, that a lot of people let it slide. They go back to the patterns that have governed them their whole lives. It's human nature.
But I'm a Catholic, and I have aspirations to be a serious one, and one of the big things that Catholicism teaches is that with a combination of will and grace, fallen human nature can be overcome. We can rise above our previous selves.
I worked on my plan for months. All through chemo and surgery. All through the arduous recovery periods. And through all the time when we didn't know what the outcome of it all was going to be. In fact, I made two plans. Plan A for a successful outcome, and Plan B for continued cancer. There were times, funnily enough more often after I knew it was over, when I looked upon Plan A with a certain amount of dread. I know myself only too well and I know what the obstacles are that I now am obliged by being alive to overcome. Still, those obstacles were there all along, and there is not now anything more to do than there was before cancer. It's just that now, I feel much more keenly that I want to try.
Phase one of Plan A was simple recovery. Eating and sleeping and taking tests to see how my body was going to be after treatment, to get an idea how long it was going to take, how much energy I could expend each day, what tasks were possible, and how much they were going to cost the next day. Judging limits and building up as much as possible within those limits, then setting the goal posts a little further back. I gave myself until Easter, because Andrea was coming back then.
I'm keeping careful track of what food I eat. After several years of fiddling about, I've finally become serious about entirely cutting out sugar and grains (insulin and blood sugar problems galore all my adult life, but did I think I needed to do something right now? Noooo!) and starting an exercise regimen designed to ward off osteoporosis, the dreaded side effect of surgical menopause.
Phase two starts tomorrow. A reorganisation of my days to take the best possible advantage of time every day. Andrea has agreed to let me start taking classes every day, five days a week. Mondays I'm booked for a full day, two classes with a one hour break for lunch, from ten am to five pm. Tuesday to Friday, I'm in class in the mornings and working in the afternoon, either at home or at the office, and then working an extra day on Saturday. Work has kindly allowed me to shift my work week over one day, to go Tuesday to Saturday. We've been needing someone to monitor the world on Saturdays, so this will work out well for LSN too.
Rest and recovery time is over. Time to get back into life, full time. It's like a scientific experiment. Can I use my will and intellect, and the grace available to me in my current state in life, to put myself back together and live a complete, completely human, life?
We'll see.
~
Saturday, March 17, 2012
Done
Last update:
Just got the report back from the cellular test:
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
~
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
~
Thursday, March 01, 2012
Last straw
Well, we had our last adventure with the administration of the Gemelli Oncology department yesterday.
I want to start this little story with a reiteration of something important. I remain convinced that I have received the best possible medical care for my cancer, and I am always going to be grateful to the doctors and nurses who treated and cared for me. I've said many times that I would never have wanted to trade the care I received here for the kind I know I would have received in England or Canada.
Italian doctors, particularly at a Catholic hospital, actually seem to engage their souls in what they do, they like people and are genuinely distressed when a patient is ill and frightened. I believe that this Christian humanistic ethic is vastly superior to the utilitarian ethic that has taken over in Anglo countries leaving doctors coolly indifferent and nurses outright brutal and callous.
I'll always consider it an act of Divine Providence that I was here when I was diagnosed and that I didn't have to go back to the Cold Countries.
Italian hospital administration, however, I would not wish on my worst enemy.
After my surgery at the end of December, I was told very forcefully that I was not necessarily out of danger. I absolutely had to have a follow-up appointment with the doctors to check that there was no more cancer, and that these appointments would have to continue every month for a year, then every other month for two more years. It was crucial to continue to monitor me closely to make sure the cancer is all gone. Recurrence is terrifying and can spread into vital organs in a matter of weeks or even days.
Recurrence = death in nearly 95 per cent of cases.
I was told that I had to get my first follow-up appointment secured by the end of January. And, fatally, I was given a phone number to call.
Now, why didn't anyone just arrange the first appointment while I was still in the hospital? Or just set it up and call me and tell me when to come back? For some reason, they think it's a good idea to make the patient make these arrangements after being discharged. This despite the fact that a patient after a total hysterectomy can't arrange a glass of water.
So, a month came and went and all our efforts to raise anyone in the oncology office were in vain. This has been the standard thing all along. They don't answer the phone in the oncology office. They JUST DON'T ANSWER THE PHONE. I told the lead doctor about this problem so she gave me her cell phone number and told me to call if there were problems.
I called.
And I called.
And I got friends to try to call.
And they called.
No answer. Voice mail messages not returned. Busy signal for six or seven hours straight.
About the middle of February, I finally called the doctor and told her that I had had no luck raising a human being at the oncology office and that the time had long since passed when I was supposed to have had my first appointment. She said that C________, the follow-up appointment secretary had told her that she had tried to call me "several times" but had got no answer. I said that this was unlikely because I had grown so paranoid about missing the call that I was carrying the phone around with me in my pocket and sleeping with it under my pillow, and had tucked it into my bra when I didn't have any pockets. I had also received no "missed call" or SMS messages.
Dr. _____ said she would call C_______ right away and get back to me. A few minutes later, the long-suspected-of-non-existence C_________ called and gave me an appointment for February 29th. Two pm.
I was annoyed that this meant that two months to the day had been allowed to pass without this important follow-up, but let it pass, relieved to have the business over. I had a list of things I wanted to bring up with the oncologist: tired all the time, possible surgical damage to my left leg that is making it hard to walk... stuff like that...
So, yesterday, I took the day off work and bundled my perpetually tired self onto the train and went into the City, to the Gemelli and was in the appointed place at the appointed time.
No one was there.
I banged on doors at the end of the long empty corridor. A woman peeked out through some blinds behind a window, and flicked the switch on the microphone and said in Italian, that the office was closed for the day. No they had never heard of Dr. _____.
With growing unease, I went down to the oncology office to find out what was going on. When I got there, I found Valentina, the regular secretary, about whom the less I say the better after a year of ... encounters... and another doctor, neither of whom spoke any English. Mustering up as much Italian as I could, I explained that I had an appointment with Dr. _______ but no one seemed to know anything on the 7th floor. C_______ was at lunch, they said, could I please wait. I said I would but could someone please call Dr. ______. I had tried several times but the number just went straight to voicemail.
I stood in the corridor. [Don't leave... don't leave... don't leave...] Eventually I wandered back into the office and stood there just to make them as uncomfortable as possible.
About 15 minutes later, C________ came back from pranzo and looked at me in shock. What was I doing here?
This went on for a while, with me getting increasingly furious.
"Aspetta. Cinque minuti."
The phone on the desk started ringing forlornly. No one answered it while a little flurry of papers were consulted. I wondered how many other people were trying to get first follow-up appointments while the phone continued ringing futilely. I looked over at the end of the counter I was leaning on, and noticed that the large and very ugly pot of dried flowers, painted purple, were visibly shuddering in time with my heart beat.
C________ approached again looking worried.
I went on to explain in detail how difficult it is to make an appointment when the appointment secretary never, EVER answers the phone.
C_______ starting to look more and more worried as my face flushed bright scarlet, sweat ran down my forehead and my breathing started coming through my teeth. Was it my imagination that the rest of the room was starting to shudder in time with my heart beat?
I drew a deep breath,
C_______ jumped as my voice rose to a window-shattering pitch.
In an instant, it all flashed through my mind...all the months of waiting for this office to return my calls, answer the phone, to tell me anything at all about my condition, my prognosis, their obfuscation when I asked for consultation appointments, for medical records to be sent to my GP. The three months I spent thinking that the whole business was going to be taken care of with one surgery, no chemo, no hysterectomy, the information that had turned out to be a lie. The memory of the 17 hours I spent in the hospital with no food or water before they told me they were going to cut out my uterus. The three cycles of chemotherapy after which I was sent home to recover alone with no medical assistance or oversight, no support. The terror of the day when I tried to walk and my legs gave out, when I woke up at one am screaming in pain from neuropathy because they had only prescribed tylenol for neural damage...
All the months of fear and pain, the nights thrashing in agony, all of which could have been greatly alleviated had I simply been able to reach a doctor on the phone. A year of not having my calls answered. A year of not being able to ask a doctor a question. A year of having to look things up on the internet and make guesses. A year of terror.
I am happy to say that I left before I started screaming like a lunatic. No oncology secretary was harmed that day.
I walked through the hospital, garnering stares, to the train station. At the platform I called my GP and told him what had happened. That they told me I would not be able to see any doctor until September. He was horrified. I said I needed to see someone else, at some other hospital. I needed a referral and I had to get the Gemelli to sent my medical records to him.
He gave me the name of another oncologist at Civitavecchia hospital and with the help of friends, I have an appointment with him tomorrow morning for a follow-up. Other friends, who are used to dealing with the Gemelli, are going to arrange for my medical records to be forwarded.
I will be getting in touch with a lawyer to discuss how to lodge a formal complaint.
As of this evening, Dr. ________'s phone continues to switch directly to voice mail.
So, I thought I would let y'all know what has been going on lately. And why I am putting the paypal button back on the side bar for a while.
I have to see a whole new set of doctors and it is likely that the best way to deal with a lot of this will be to work through the private system. My health coverage has expired and I have got both the money and the correct paperwork to renew it, so that's not a problem. But it expired the day after I was discharged from the hospital after surgery, so I have not been able to get myself to the office in Civitavecchia to file the papers. This means that all the doctors I have seen (except for Dr. G______ the local GP) have had to be paid, and I have shot through 250 Euros in follow-up blood tests.
To deal with other post-operative repercussions, I will have to have a mammogram at a private diagnostic clinic and more scans and blood tests for which, even with full public coverage, there will be user fees. And I'm broke. At least, I'm not so broke that I can't keep the rent and bills up, but the gynecologist is private and I will be having a succession of ultra sounds and consultations which are going to run me into some hundreds of Euros. [So much for my microscope...sigh]
Though I am embarrassed to ask, I would certainly appreciate some help defraying these medical expenses. It seems likely that I will have to be doing a good deal of this in the private system. We are past the point where the treatments will cost in the thousands and tens of thousands, but the hundreds are still more than I can manage easily.
Thanks in advance.
UPDATE:
All squared away at Civitavecchia Ospedale San Paolo. Tests and appointments all booked, medical records being sent on. The oncology department is tiny, probably no more than three doctors and as many nurses, one of which answers the phone and books appointments straight away. I brought all the paperwork I had giving the whole medical history.
Dr. M____ is a perfectly nice fellow and speaks about as much English as I speak Italian, so we more or less matched in the middle and managed to communicate pretty well. He read all my stuff over and called one of my Gemelli doctors he knew. Turns out that no one is worried about me medically, they are very confident at Gemelli that the cancer is finito. It seems the pain, and now lump, in my leg is just an inflamed lymph node, which is a normal outcome from this kind of surgery. I'm getting it ultra-sounded, however, just in case there is something else wrong, but no one thinks so.
So, all follow-ups, scans and tests are booked. The nurse actually took me down to radiologica to make sure I got all the pieces of paper stamped by the right people, then wrote my appointment times in her book and gave me a photocopy.
So, there we are. Moving on...
~
I want to start this little story with a reiteration of something important. I remain convinced that I have received the best possible medical care for my cancer, and I am always going to be grateful to the doctors and nurses who treated and cared for me. I've said many times that I would never have wanted to trade the care I received here for the kind I know I would have received in England or Canada.
Italian doctors, particularly at a Catholic hospital, actually seem to engage their souls in what they do, they like people and are genuinely distressed when a patient is ill and frightened. I believe that this Christian humanistic ethic is vastly superior to the utilitarian ethic that has taken over in Anglo countries leaving doctors coolly indifferent and nurses outright brutal and callous.
I'll always consider it an act of Divine Providence that I was here when I was diagnosed and that I didn't have to go back to the Cold Countries.
Italian hospital administration, however, I would not wish on my worst enemy.
After my surgery at the end of December, I was told very forcefully that I was not necessarily out of danger. I absolutely had to have a follow-up appointment with the doctors to check that there was no more cancer, and that these appointments would have to continue every month for a year, then every other month for two more years. It was crucial to continue to monitor me closely to make sure the cancer is all gone. Recurrence is terrifying and can spread into vital organs in a matter of weeks or even days.
Recurrence = death in nearly 95 per cent of cases.
I was told that I had to get my first follow-up appointment secured by the end of January. And, fatally, I was given a phone number to call.
Now, why didn't anyone just arrange the first appointment while I was still in the hospital? Or just set it up and call me and tell me when to come back? For some reason, they think it's a good idea to make the patient make these arrangements after being discharged. This despite the fact that a patient after a total hysterectomy can't arrange a glass of water.
So, a month came and went and all our efforts to raise anyone in the oncology office were in vain. This has been the standard thing all along. They don't answer the phone in the oncology office. They JUST DON'T ANSWER THE PHONE. I told the lead doctor about this problem so she gave me her cell phone number and told me to call if there were problems.
I called.
And I called.
And I got friends to try to call.
And they called.
No answer. Voice mail messages not returned. Busy signal for six or seven hours straight.
About the middle of February, I finally called the doctor and told her that I had had no luck raising a human being at the oncology office and that the time had long since passed when I was supposed to have had my first appointment. She said that C________, the follow-up appointment secretary had told her that she had tried to call me "several times" but had got no answer. I said that this was unlikely because I had grown so paranoid about missing the call that I was carrying the phone around with me in my pocket and sleeping with it under my pillow, and had tucked it into my bra when I didn't have any pockets. I had also received no "missed call" or SMS messages.
Dr. _____ said she would call C_______ right away and get back to me. A few minutes later, the long-suspected-of-non-existence C_________ called and gave me an appointment for February 29th. Two pm.
I was annoyed that this meant that two months to the day had been allowed to pass without this important follow-up, but let it pass, relieved to have the business over. I had a list of things I wanted to bring up with the oncologist: tired all the time, possible surgical damage to my left leg that is making it hard to walk... stuff like that...
So, yesterday, I took the day off work and bundled my perpetually tired self onto the train and went into the City, to the Gemelli and was in the appointed place at the appointed time.
No one was there.
I banged on doors at the end of the long empty corridor. A woman peeked out through some blinds behind a window, and flicked the switch on the microphone and said in Italian, that the office was closed for the day. No they had never heard of Dr. _____.
With growing unease, I went down to the oncology office to find out what was going on. When I got there, I found Valentina, the regular secretary, about whom the less I say the better after a year of ... encounters... and another doctor, neither of whom spoke any English. Mustering up as much Italian as I could, I explained that I had an appointment with Dr. _______ but no one seemed to know anything on the 7th floor. C_______ was at lunch, they said, could I please wait. I said I would but could someone please call Dr. ______. I had tried several times but the number just went straight to voicemail.
I stood in the corridor. [Don't leave... don't leave... don't leave...] Eventually I wandered back into the office and stood there just to make them as uncomfortable as possible.
About 15 minutes later, C________ came back from pranzo and looked at me in shock. What was I doing here?
I have an appointment.
[Blink...Blink...]
But your appointment was last week, Friday at ten am.
No, [teeth starting to grind involuntarily] you told me to show up today, February 29th at two pm.
[Eyes wide] But Dr._______ never takes appointments after noon.
This is when you told me to show up. February. 29th. at. two. pm. That's all I know. No wait, I also know that I am now a month overdue for my first follow-up.
But Dr. _______ said she sent you a message. You were supposed to get a message confirming your appointment.
Niente. Nothing. Nada. Nowt. I had received no messages from anyone. When you called and told me when the appointment was, that was when I was coming. [Grinding getting louder] That is how this works. You tell me the time for the appointment, and I show up at that time.
This went on for a while, with me getting increasingly furious.
"Aspetta. Cinque minuti."
The phone on the desk started ringing forlornly. No one answered it while a little flurry of papers were consulted. I wondered how many other people were trying to get first follow-up appointments while the phone continued ringing futilely. I looked over at the end of the counter I was leaning on, and noticed that the large and very ugly pot of dried flowers, painted purple, were visibly shuddering in time with my heart beat.
C________ approached again looking worried.
Dr. ______ can't come today. She told me that she had sent you a message giving the other time. Last Friday.
I never received any message from anyone. I have to have a follow-up appointment every month. I'm very, VERY angry.
I know...
It has now been two months since my surgery and I have not seen a doctor once in that time.
I know...
I went on to explain in detail how difficult it is to make an appointment when the appointment secretary never, EVER answers the phone.
Is there some other pressing work that needs to be done that means you can never answer phone calls from patients? You ARE the appointment secretary for follow-up appointments, aren't you?
C_______ starting to look more and more worried as my face flushed bright scarlet, sweat ran down my forehead and my breathing started coming through my teeth. Was it my imagination that the rest of the room was starting to shudder in time with my heart beat?
I drew a deep breath,
OK, this is obviously pointless. Let's just make another appointment as soon as possible.
Well, the next available appointment isn't until September.
What?!
WHAT?!!!
WHAT??!!!
C_______ jumped as my voice rose to a window-shattering pitch.
In an instant, it all flashed through my mind...all the months of waiting for this office to return my calls, answer the phone, to tell me anything at all about my condition, my prognosis, their obfuscation when I asked for consultation appointments, for medical records to be sent to my GP. The three months I spent thinking that the whole business was going to be taken care of with one surgery, no chemo, no hysterectomy, the information that had turned out to be a lie. The memory of the 17 hours I spent in the hospital with no food or water before they told me they were going to cut out my uterus. The three cycles of chemotherapy after which I was sent home to recover alone with no medical assistance or oversight, no support. The terror of the day when I tried to walk and my legs gave out, when I woke up at one am screaming in pain from neuropathy because they had only prescribed tylenol for neural damage...
All the months of fear and pain, the nights thrashing in agony, all of which could have been greatly alleviated had I simply been able to reach a doctor on the phone. A year of not having my calls answered. A year of not being able to ask a doctor a question. A year of having to look things up on the internet and make guesses. A year of terror.
I am happy to say that I left before I started screaming like a lunatic. No oncology secretary was harmed that day.
I walked through the hospital, garnering stares, to the train station. At the platform I called my GP and told him what had happened. That they told me I would not be able to see any doctor until September. He was horrified. I said I needed to see someone else, at some other hospital. I needed a referral and I had to get the Gemelli to sent my medical records to him.
He gave me the name of another oncologist at Civitavecchia hospital and with the help of friends, I have an appointment with him tomorrow morning for a follow-up. Other friends, who are used to dealing with the Gemelli, are going to arrange for my medical records to be forwarded.
I will be getting in touch with a lawyer to discuss how to lodge a formal complaint.
As of this evening, Dr. ________'s phone continues to switch directly to voice mail.
So, I thought I would let y'all know what has been going on lately. And why I am putting the paypal button back on the side bar for a while.
I have to see a whole new set of doctors and it is likely that the best way to deal with a lot of this will be to work through the private system. My health coverage has expired and I have got both the money and the correct paperwork to renew it, so that's not a problem. But it expired the day after I was discharged from the hospital after surgery, so I have not been able to get myself to the office in Civitavecchia to file the papers. This means that all the doctors I have seen (except for Dr. G______ the local GP) have had to be paid, and I have shot through 250 Euros in follow-up blood tests.
To deal with other post-operative repercussions, I will have to have a mammogram at a private diagnostic clinic and more scans and blood tests for which, even with full public coverage, there will be user fees. And I'm broke. At least, I'm not so broke that I can't keep the rent and bills up, but the gynecologist is private and I will be having a succession of ultra sounds and consultations which are going to run me into some hundreds of Euros. [So much for my microscope...sigh]
Though I am embarrassed to ask, I would certainly appreciate some help defraying these medical expenses. It seems likely that I will have to be doing a good deal of this in the private system. We are past the point where the treatments will cost in the thousands and tens of thousands, but the hundreds are still more than I can manage easily.
Thanks in advance.
UPDATE:
All squared away at Civitavecchia Ospedale San Paolo. Tests and appointments all booked, medical records being sent on. The oncology department is tiny, probably no more than three doctors and as many nurses, one of which answers the phone and books appointments straight away. I brought all the paperwork I had giving the whole medical history.
Dr. M____ is a perfectly nice fellow and speaks about as much English as I speak Italian, so we more or less matched in the middle and managed to communicate pretty well. He read all my stuff over and called one of my Gemelli doctors he knew. Turns out that no one is worried about me medically, they are very confident at Gemelli that the cancer is finito. It seems the pain, and now lump, in my leg is just an inflamed lymph node, which is a normal outcome from this kind of surgery. I'm getting it ultra-sounded, however, just in case there is something else wrong, but no one thinks so.
So, all follow-ups, scans and tests are booked. The nurse actually took me down to radiologica to make sure I got all the pieces of paper stamped by the right people, then wrote my appointment times in her book and gave me a photocopy.
So, there we are. Moving on...
~
Saturday, January 14, 2012
All art and work plans going forward
I just got the call from the doctor at the Gemelli. He said the histology report came back clean. I had a microscopic tumour on the uterus, but the margins were clean. No more cancer. It's over.
I'm still more or less flat on my back from surgery two weeks ago, but now I can just recover and get on with things.
It looks like the rest of my life will now happen.
~
I'm still more or less flat on my back from surgery two weeks ago, but now I can just recover and get on with things.
It looks like the rest of my life will now happen.
~
Saturday, November 05, 2011
Also...
Hair Update:

September 20th, going for the full Persis, polished cue-ball look. Those eyebrows are painted on and I've got about five eyelashes.

October 28th, natural eyebrows eyelashes returning and a bit of top-fuzz.

This morning, eyebrows shaped and eyelashes almost back to former length.

Chemo shrank the tumour; too bad it couldn't do anything about the nose.
(O's P. gold star to the first Picknicker to identify the Star Trek reference.)
~

September 20th, going for the full Persis, polished cue-ball look. Those eyebrows are painted on and I've got about five eyelashes.

October 28th, natural eyebrows eyelashes returning and a bit of top-fuzz.

This morning, eyebrows shaped and eyelashes almost back to former length.

Chemo shrank the tumour; too bad it couldn't do anything about the nose.
(O's P. gold star to the first Picknicker to identify the Star Trek reference.)
~
Labels:
Battle of Plataea,
Fooling about
Thursday, November 03, 2011
Going home tomorrow
Well, doctor came. Surgery was without complications. Now they have to do the histology, a cell-by-cell examination of the "margins" the bits they cut out around the tumour, to make sure there is no cancer there. If the answer is no, then that's it.
If yes,
...well...
We won't know for 20 days.
But I'm going home tomorrow morning either way.
~
If yes,
...well...
We won't know for 20 days.
But I'm going home tomorrow morning either way.
~
Still in hosp...
Still here. Went in for surgery at six and was out again by eight. If the bleeding has stopped they may let me go home either tonight or tomorrow morning. More or less just lay around all day, drawing and hanging out. Not too much pain, but of course started off on massive painkillers for chemo-induced neuropathy, so it's hard to tell. Still no sign of any surgeon to give me any news as to how it went. Spent the day recovering... and waiting...and drawing...and still waiting...and drawing some more...
Vicky has knitted me a whole hat and...
...yep...we're still waiting...
Ten to six...
...still waiting...
~
Vicky has knitted me a whole hat and...
...yep...we're still waiting...
Ten to six...
...still waiting...
~
Wednesday, November 02, 2011
Still alive
There was no room in the oncology ward where I've had everything else, so when we got here, they gave me a really nice posh single in the baby ward. Only one bed and a sofa for people to come hang out on. In the baby ward, they give you towels, a little pack of toiletries, and a mid-day snack if you want it. The food is better and they let people stay over night if they are wanted.
Bit ironic, really, that I'm in here and will be unlikely, particularly after this week, ever to be a mother.
So far, we're just waiting. Had a blood test, cardiogram and chest x-ray, and an examination by the doctor. It's two pm and no one has any idea when the surgery will happen. Expecting visits from the anesthesiologist (since yesterday) and the surgeon, the famous Professor Scambia.
Trying to stay calm, with middling success.
~
Bit ironic, really, that I'm in here and will be unlikely, particularly after this week, ever to be a mother.
So far, we're just waiting. Had a blood test, cardiogram and chest x-ray, and an examination by the doctor. It's two pm and no one has any idea when the surgery will happen. Expecting visits from the anesthesiologist (since yesterday) and the surgeon, the famous Professor Scambia.
Trying to stay calm, with middling success.
~
Monday, October 31, 2011
The Home Stretch
I'm back to the Gemelli tomorrow morning, with surgery scheduled for Wednesday, and will probably be there for the rest of the week. They will use laparoscopic surgery to remove the tumour, then send the tissue to the lab for examination. This histological examination will tell them if there is any cancer left alive to worry about. If the answer is no, then we will be finished.
I'm going to bring the computer and the mobile internet stick to the hospital to keep myself entertained. Don't know how much posting I'll be able to do, but I'll give someone the passwords to this and to the FB acct, and let y'all know if they've accidentally cut my head off.
HJW
~
I'm going to bring the computer and the mobile internet stick to the hospital to keep myself entertained. Don't know how much posting I'll be able to do, but I'll give someone the passwords to this and to the FB acct, and let y'all know if they've accidentally cut my head off.
HJW
~
Monday, October 24, 2011
Florence
Got the call from the Gemelli on Thursday. I'm to "be ready" to go in today with the intention of having the surgery by Wednesday (tests and stuff in between). So, in order to avoid spending the weekend sitting around the house moping and worrying,

me n' Vic went to Florence!
We went on Saturday morning, on the 7:08 (the first) train to Pisa, switching to the Florence commuter route and got there by 11:30 on the dot. The first day we mostly spent just walking around and looking at things. It was surprisingly cold for the time of year, so we kept moving and didn't stop to sketch things outdoors.
We got a nice clean little room in a small pensione, quite comfortable and decently furnished with friendly staff, for 40 E each a night. Early Sunday morning we went straight to the Accademia museum (the one with the David) and ended up spending the better part of the day in there drawing the sculptures. We had hoped to get into the Uffizi but couldn't get a booking and didn't want to face the queue.
Assuming I don't die and the Parousia holds off for a while, there will definitely be more Florence going on around here.

What the Ponte Vecchio looks like on the inside.

A saint. On the Duomo.
We had many adventures, including visiting the greatest art store in the world, none of which I have the energy to relate right now. But since I'm supposed to be in the hospital two days before having surgery, and there aren't going to be any poisonous chemicals involved, I'll have plenty of time later while sitting around in my pajamas waiting for things.

Florence had many shiny shops. Not as shiny as Venice's shiny shops, but pretty sparkly nonetheless.
More later.
(All pics h/t to Vicky.)
~

me n' Vic went to Florence!
We went on Saturday morning, on the 7:08 (the first) train to Pisa, switching to the Florence commuter route and got there by 11:30 on the dot. The first day we mostly spent just walking around and looking at things. It was surprisingly cold for the time of year, so we kept moving and didn't stop to sketch things outdoors.
We got a nice clean little room in a small pensione, quite comfortable and decently furnished with friendly staff, for 40 E each a night. Early Sunday morning we went straight to the Accademia museum (the one with the David) and ended up spending the better part of the day in there drawing the sculptures. We had hoped to get into the Uffizi but couldn't get a booking and didn't want to face the queue.
Assuming I don't die and the Parousia holds off for a while, there will definitely be more Florence going on around here.

What the Ponte Vecchio looks like on the inside.

A saint. On the Duomo.
We had many adventures, including visiting the greatest art store in the world, none of which I have the energy to relate right now. But since I'm supposed to be in the hospital two days before having surgery, and there aren't going to be any poisonous chemicals involved, I'll have plenty of time later while sitting around in my pajamas waiting for things.

Florence had many shiny shops. Not as shiny as Venice's shiny shops, but pretty sparkly nonetheless.
More later.
(All pics h/t to Vicky.)
~
Thursday, October 06, 2011
Double sixes
Had a consultation with the doctors at the Gemelli today. The news is that the chemo was effective. The tumour has shrunk and the structure of blood vessels feeding it has disintegrated, so the whole mass is dying. This means that the surgery will be the small conic excision surgery. They then have to do a histological examination of the tumour itself but if that goes as expected, the surgery will be the end of it. Cancer will be finished.
I hardly know what to say about it at this point.
~
I hardly know what to say about it at this point.
~
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