Christmas Chemo

We got up at the crack of dawn to get to the hospital by 9 this morning. My red blood counts are O.K. now, so I'm off the EPO, but getting another injection for my white blood count. It's always something, isn't it?

I went armed with a bag of Christmas sweeties and the nurses were very appreciative, but I still had to wait half an hour for a bed after I'd seen the doctor.

The doctor wants me off all my medication except what I normally take (thyroid and anti-depressant). She says she's appalled at the number of prescriptions I have. I said I was appalled, too, and I wasn't taking anything any more except I was still weaning myself off the last variation of cortisone.

I told her about the cats and how I think the blockage I feel in my throat and chest (that no one can find) are really an allergic reaction, and I want to start on an anti-histamine, she snapped, "Later"! O.K. Perhaps, if there is something there, it will show when I get the CT scan on the 8th of January. The scan will include the thorax. (I guess she does listen to me.)

No one seemed to notice I have a cold, even though I'm croaking rather than talking, when I can speak at all. We did notice that I have gained 2 kilos. Crap! I'm not even eating, compared to my usual voracious appetite.

We wish you the joys of the season.

The people: Nick & Margot
The dogs: Van-Ly & Nala

The cats: FloJo, Harry & Miosa

House-- Terrace -- and Weather -- Corrected - Really

We (the Royal "we" aka Nick) are making progress. Here is the dug-out terrace. Or part of it.

I apologise for the length of the slide show. My cats are just too cute.

And in other news: I've got a cold. A mild one, but a cold.

I think I'm Allergic to My Cats

Sigh.

I've had cats since I was five years old. I wouldn't even give up the ones I don't like -- and if you like them all indiscriminately, you have no. . . discrimination. Cats are people, too.

Since I started regular hospital visits (my own), I have noticed that I don't sneeze or need half a box of tissues a day as I do at home. And this congestion in my throat and chest for which I had an X-ray and echogram last month? Comparing notes with Nadine the other day, these are the symptoms that her daughter, Maella, gets when she's around cats.

Well, rats, I say! I can't give away the cats. For a start, who in their right mind would take FloJo? Unless they've never had a cat before and don't know any better. Besides, she's ten years old. And Harry is seven. And I love Miosa, who is only two.

So I've now added Clarytine to my daily dose.

No Chemo Today

"Today" was actually "yesterday," but I'm prepared to ignore that if you are. Anyway, the hospital called before I left the house -- before I got up, actually -- to say that my blood tests weren't O.K. and not to come in. Just come for my next regular appointment, which is the 22nd. I haven't received my copy of the results, yet, but probably will tomorrow (which you might want to refer to as "today").

The blood enhancer that I'm taking comes as pre-loaded syringes in packs of 4 and as singles. The pharmacist gave me a package of 4 and tonight I went back to collect the other 2, to find that it no longer comes in singles, only 4s. At 1100€ for 4, I am reluctant to waste 2, so now have to call the oncologist and see if she wants me to stop at the first 4 or do 8 weeks. I had no idea!

Today, I got out of bed and dressed, voluntarily, for only the second time (yesterday was the first) in a couple of months. Staying inside gets depressing and I decided I needed some sunshine. At last I have been in France long enough, or find myself in circumstances such, that I go outside and sit on the bench on the sidewalk in front of the house in the sun. Like all the old people. O.K., young people, too. It's sort of like sitting on your front porch. When they redo the road and pavement in the spring, we may not be able to have benches any longer. I can't see that working.

I take Nala with me, knowing that I will feel guilty if I don't give her at least a little walk after she's been batting the back of my shins. How bad is this: she walks farther and faster than I can.

It's now the next day (I give up calculating) and my blood results have arrived. They're worse than last week. So glad I'm getting these 300€ a throw injections.

I got up again. After 3 days, I no longer have to sit and rest after the first 3 steps.

We took Nala and Van-Ly for the ride (and me, for the ride) when Nick went to pick up a friend's cement mixer today. The nice thing about everyone in the area knowing your dogs is that Jackie, the worker on the next farm, brought Nala back when she wandered up the mountain to see what there was to see. Somehow, Jackie has the impression that she's deaf.

Update: Body & House

It's hard to write when your favourite cat is draped across your neck.

• I've had my second doping injection; still not feeling much better.
• This was the second week in my series-of-three chemo sessions
• The last session in the next series will be 6 January
• I have an appointment at Lyon on the 18th of January to check progress
• My favourite foods have become McDo cheeseburgers, pizza & ice cream
• We have installed photovoltaic solar panels

What a deal. We were planning solar panels for heating and hot water, but the others were iffy because they cost so much. Then a salesman showed up with a deal we couldn't refuse.

The company get you a loan. They do all the paperwork and I guess they underwrite the loan because no one would ever give us a loan before. I think the interest is something like 3%.

They install the panels and arrange for you to be connected to the electricity grid.

For the period of amortisation (8 years), your tax credit (which we get in cash from the government because we don't pay taxes) and your profits from selling electricity to the grid, go to pay off the loan.

After 8 years, all the profits are yours, 12 years remain of the guaranteed price from the electricity board, and 12 years of the guarantee for the panels, which will probably last another 15 or 20.

In other words, you get the whole thing without putting out a penny. In fact, the day they installed the panels, Nick came in with a cheque for 2,000€ which the company gave us to cover our first loan payment because the tax credit and money from the electricity board may not have arrived, yet.

Where Do I Sign Up for the Tour de France?

"You're being doped, Margot!" said my GP, looking at my new prescriptions. "Fine," I said, "I'll become a cyclist."

They're obviously getting better stuff. Two days after my first injection of NeoRecormon I'm still barely able to breathe, much less walk. But I have had a chest x-ray (perfect) an ultrasound on my thyroid (no change) and a tube down my throat (couldn't find anything). And a hearing check (not much worse).

I'm getting an injection to boost my red corpuscles once a week for 6 weeks. We shall see.

Ongoing Infection

. . . or inflammation.

My doctors talked to each other and decided I should go back on cortisone for awhile. I can't tell what I was taking before that was cortisone, but this one is mild -- 10mg -- and I've only been prescribed 3 a day. As I am never awake at all the appropriate times, I've been taking 2 a day.

I ate two proper dinners: fish, rice and a bit of vegetable. Not much, but still. Today a neighbour sent a rice and fish dish, but it was too spicy for me in my current condition, so I had one of my Nestlé drinks, Renutryl.

Tomorrow more blood tests, ultrasound and collapse. Wednesday, chemo. Well, maybe.

Last week's Proteine C Reactive was 107.1. Normal is under 5.

See you around.

More infection

First, I'd like to thank my friend, Sam, who wrote to tell me I sound terrible. Well, that's not what he wrote about, but he did mention it in passing. Nothing worse than everyone saying how perky you are when you're. . . knackered (a bad word in Britain; no idea why. A knackers yard is our equivalent of the glue factory). . . crevé (a bad word in French unless you are referring to a flat tire; no idea why. Foreigners are so funny).

The oncologist doesn't see a problem with my blood counts, but the GP still does. They're going to talk tomorrow morning.

My posts are so boring lately.

Infection

Blood tests came through, but I haven't seen them and it's Nick who talked to the doctor this evening. I have a huge inflammation (is that the same as an infection?) somewhere.

My GP is faxing the results to the oncologist tomorrow morning and then we're supposed to telephone the hospital. GP thinks it's the result of stopping the anti-inflammatories, but that doesn't make any sense since I've had whatever this is since before I stopped.

More tomorrow. Sigh.

Doctor, Doctor!

Went to the doctor this morning. She says I'm probably going to feel lousy for 2 or 3 weeks until my body gets used to its pain-killer famine.

She gave me a couple of cans of distributed-to-doctors Metrecal.

She gave me a prescription for an ultra sound of the throat and bronchii. (Is that English -- Latin, at least?) The problem is that there is always a wait and I can't sit up for long. Today I reclined the seat in the car, lay down and waited, counting patients leaving her office, until it was my turn.

Today, my throat actually hurts. And this evening, my ear is starting to hurt. She's probably right: some sort of infection. But no fever or other indication of illness.

Please tell me that being allergic to my cats wouldn't do this to me.

Now look! You've made me write another post!

Oh, for Heaven's sake, you lot! I'm sick, not nuts.

• a) the morphine withdrawal lasted about 2 weeks; it's over.
• b) last week I was outside several times, including up to Saturday. Now I'm back in bed, again.
• c) I went to the doctor last Monday. I'm going, again, tomorrow.
• d)I was almost weaned off everything, anyway; so I didn't do the cold turkey thing.
• e) I've had this thing in my throat -- or chest; it seems to move -- for 3 or 4 weeks; not 2 days. I told the doctor. She didn't find anything. Now I want a ultrasound or a scan or whatever it takes to see what's there.
• f) my daily diet consists of a croissant and hot chocolate (standard French breakfast); melon and fresh goat's cheese (lunch; can't get cottage cheese here); hors d'oeuvres and champagne; (I spent Friday at a memorial service and wake (finally broke down and wore my wig, but I still have some hair); and chicken or pork chop and rice and ice cream (dinner -- except yesterday when it was odds on to come right back up).

The remaining drugs I was on were:

• Inexium (for the stomach; not needed if pain killers are finished)
• Pred (finished last week)
• Gabapentine (down to 1 from 3 a day)
• Rivotril (down to 3 drops from 5)

These last two are, I think, the epilepsy drugs, but I was taking them for pain; I don't have epilepsy

• Forlax (laxative; not needed if pain killers are finished)

On the blood-count front, my hematies and leucocytes, whatever they are, were low last week from the blood draw on Tuesday, so I had to sit around the hospital for an extra two hours on Thursday while they sent some more blood to the lab. Luckily, the counts were back enough for me to have chemo.

My thryoid is perfect.

Don't think I don't appreciate your concern.

Reason Umpteen Why I'm Not Brave

'Cause when I'm sick, I'm sick. And bored. Too sick to read. Can't race through the seventh season of West Wing because I have to wait for Nick. (No comments, please. Let me get to the end. I think I love it more than M*A*S*H.) First time in days I have strength for the computer -- and not much. So I haven't been up to blogging and being entertaining.

But, please, don't let that stop everyone from nagging. I'm sure it's good for me.

I think the Week of the Schedule did me in. Plus I've got some kind of lump in my throat or my chest. I'll go to the doctor tomorrow. Maybe. Plus I'm nauseous. Plus I've lost my appetite -- for more than the normal 3 days.

I think the "lump," or lumpy feeling is from one of the painkillers, so I've just stopped them all. I'm over the morphine withdrawal, but I gather some of the other pills are also epilepsy medicines and require tapering off. Why on earth would they give me those?

At least I'm not eating madelines by the thousands now, although chocolate ice cream with chocolate bits is still on the menu.

If not "enjoying ill health," in her mother's phrase, not fighting it much, either.

Schedule for Week of 2 November 2009

Monday

• Blood test
• Drive to Lyon, spend night with friends

Tuesday

• Meet MIL (Avril), SIL (Jane), BIL Robert) at eye clinic
• Lunch in Lyon
• Return home

Wednesday

• Chemo
  

Thursday

• Nyons Market
• Doctor
• Dinner out

Friday

• Avril to train
• shopping
• home

Now you know why you might not be hearing from me.

The Opium Den

For the past couple of days I've been feeling rotten, again. Do I have a cold? (Arghghghgh! Will I miss my chemo?) Do I have SAD? It's been raining and raining and raining and raining and raining and. . . (Nick says only 3 days.) I took to bed. Sulking.

Today Nick figured out the problem. For a couple of weeks now, I've not needed my top-up morphine -- not enough pain -- but I've been taking the 20 mg slow-release pills, anyway. A few days ago I ran out and they require a special prescription. Not only do I need a special prescription, my doctors can't get it together about who gives me what, so I haven't been taking any morphine at all. Withdrawal symptoms, anyone? Never let the hospital tell you you're on too small a dose to have a problem. I got a new supply yesterday and started on halves about an hour ago. Hello world.

Saw the urologist. He went on about my kidneys (which are still O.K.) I said my major problem was my bladder and the infection. That may be your major problem, he said, but my major problem is your kidneys. The look on his face was both horrifying and priceless when I told him how long I'd had the catheter and it hadn't been changed. And it wasn't working, anyway. So it's out!!!! I have these little self-service units called intermittent catheters which I don't seem to need much. Mine's the green model.

When the urologist sent me upstairs to get the Rx from the oncologist, we had a longish wait in the waiting room. The lunch trolley came by and they asked if I wanted to eat. "Oh, I'm not here for treatment," I said, "just for a consultatation." But there was a tray with my name on it (they must not have realised it's my off week), so Nick and I had salad, veal steak, buttered macaroni, goat's cheese, bread and peach compote for lunch. LOL!!

A Dog Blog

I am really tired of cutting up the "dogs'" food in cat-sized portions. Starting this week, they're getting whole pieces -- or, in Van-Ly's case, halves. But today she goes on wholes. Nala ate a whole pork chop last night, uncut! (She's Reformed.) After having carried over a chicken meal the day before, Van-Ly ate her pork chop in halves. A mighty improvement. And she's only 5 years old. :-)

Nala, by the way, is dancing around like a, uh, um, a dog! Walkies! Food! I think this is because she found out I either can't add or my memory is shot. We got her when Van-Ly was one, not at the same time. Van-Ly is only 5. Ergo, Nala is not 12, but 11. Hey, I'd dance, too, if someone wanted to take 7 years off my age.

She had to go out in the middle of the night a few days ago. She woke me up and stood at the back door. When I let her out, she went to the back of the courtyard and I went back to bed for a few minutes. When I got up to let her back in she came down from the garden. You may find this boring, but Nala doesn't do back door. Hey, she understands night! (I don't do walkies at night.)

Still holding up under chemo. Lunch was lousy this week. Well, it wasn't lousy; it was choucroute -- sauerkraut and hotdog and bacon and (skip the ham). I love sauerkraut, but can't eat it on my low residue diet. Maybe I should tell the hospital about my diet.

Going to Lyon Monday afternoon and staying the night with friends. On Tuesday, we're meeting Nick's sister, Jane, and their mother, Avril, for lunch, after Avril's eye appointment. Then we're returning home Tuesday night with Avril. Such nice hosts: we're taking the dogs.

I have just given out our first trick-or-treat treat in the 17 years we've been here. You remember the kid across the street?

Have a nice Halloween.

I'm blogging, I'm blogging

Well first, I forgot to tell you about the human fly.

During my last treatment, I noticed a guy standing on the balcony of an adjacent wing of the hospital. Another guy was standing on the balcony around the corner. Then he stopped standing and started climbing. I asked the nurse if this was normal. She said they're working on the new wing, which the oncology unit is moving into in the spring.

Current unit looks all right to me, but I lived for 13 years with English hospitals: Victorian, haven't been cleaned since, light bulbs not replaced, trash unbagged and piled in corners, food delivered down the corridors in tractor-type vehicles -- that have been driven OUTSIDE. I am not making this up.

My legs are going down quite nicely. My feet no longer look like baloons, my legs no longer look exactly like they came from a piano stool, but I still have these golf balls on my ankles. Rats!

Saw the Lyon oncologist on Monday. He was happy with the progress I reported, too. A 5-hour drive for a 10-minute consultation. We decided that the catheter may have to come out as it isn't working very well, anyway, but I don't see the urologist until the 21st. Meanwhile it's Big Girl Panties!!

I also have an infection around the catheter; the microbe is proteus. I looked it up, but it's a bit complicated and I haven't had the time to read. Another test tomorrow and a course of antibiotics, I believe. The Valence oncologist actually telephoned and left a message on the answering machine. They talk to me!

One of the things I've been doing is translating the menu for the hotel/restaurant. When I offered, the owner looked slightly offended, but when I told her she was giving away the napkins and tablecloth with the starter (No, not making this up), she thought she'd avail herself of my services.

We got free drinks out of it yesterday evening. "Do you think we should order a second round and pay for it to be polite"? I asked Nick. We did. That one came free, too. So I bought a magazine. The bar is also the local magazine shop.

For the first time since we've been in France, I have bought a couple of new clothes in advance of the changing season and the advance in my weight. Today I bought a purple knit poncho. I've never worn a poncho in my life. Fat clothes. Here's one of my latest outfits: wide-leg trousers to hide the catheter bag; loose tops to hide stomach. Never been so stylish in my life. The point is, though, I don't mind autumn arriving as much as I usually do.

Read slowly. Nick's brother, John (John B. as opposed to John P., sister Sarah's husband) and his wife, Carole, arrive tomorrow from Spain, so I may be even more behind than usual. They're great houseguests and I'm looking forward to it.

Chemo and More WAGs

And I forgot to say:

• The swelling in my feet and legs has diminished slightly. You'd have to be living with it to notice.
• I lost two kgs. Not easy when you're eating an entire package of madelines a day.

So I told this to the doctor and she said, "Glad to hear it," and wrote it down. Of course, she might have been writing, "This woman is a complete nutter" -- I couldn't see -- but she seemed happy.

Slight nausea at end of chemo, treated with an anti-nausea drug. No nausea today.

Lunch was salad, pork roast, mashed potatoes, soft gruyère (packaged, I'm sorry to say), apple and pineapple sauce. I had to stick around an extra half hour in order not to miss it.

How Well Do I Know My Body? (Graphic-ish)+

We've already noted that one of the first casualties of my cancer was shame, so I thought to evaluate my current condition -- on my blog, so I couldn't take it back.

I am having a good week. I feel human for the first time since, maybe, June. Here are some of the things I've noted that I can check out tomorrow when I go for chemo.

• I've stopped sleeping ALL the time.
• I've made lunch (full meal) twice this week.
• I've fed the dogs twice (maybe 3 times) my very self.
• I've walked the dogs (with Nick) twice (maybe 3 times).
• I've gone back to house planning -- working out the lighting for the terrace and garden.
• I've gone back to finishing the bathroom. Working on a shower curtain system. And sewing.
  
• The catheter is moving. Well, it moves frequently; I can tell because of the different discomfort and a very minor amount of blood. But this time I think it's descending. That means it passage is widening enough to let it slip. This is good news and bad news. Bad news: slippage makes for more leakage. Good news: urethra has less pressure on it.
• I have had a normal bowel movement three days in a row, for the first time since I can remember, but certainly before June. (This is the no shame part.) That would mean (to me) the my intestine is less constricted.

I find it hard to believe that one chemo treatment has done this much, but tomorrow I might be able to get some information, pro or con, on my thesis.

Houskeeping

In French villages, it is the custom to air bedding and such before remaking the beds in the morning. Our neighbour across the road:

Chemo Starts Again -- New Plan

Wednesday was chemo and look at this: my own Personalised Care Sheet. It's filled out on Both Sides. Not only did the oncologist tell me (write me) which medicines I'm having, but what they do and what side effects might occur.

I'm getting Taxol (side effect: no hair) and Avastan (side effect: no capillaries). (Remarks simplified for literary effect.)

Taxol is chemeotherapy. Avastan is a medicine. I don't know what the difference is. Anyway, treatment is 3 weeks on, 1 week off. I started with 1 1/2 hours of therapy which will be reduced week by week to 1/2 an hour. Plus the cleansings and anti-nausea stuff. Whew! No more all day at the hospital.

Instead of all the nurses treating all the patients so I never learn their names, I had my own nurse. This one is Sylvia. I think. Sigh.

Lunch was good. Real cheese in a container, not plastic-wrapped industrial stuff.

I finally found something to talk to the psychologist about, so I asked to have my day changed. She/he/it doesn't come in on Wednesday. I'm still pissed off with the other hospital and lack of care. It has occurred to me that if I can get answers from the doctors about any deterioration or lack thereof in my condition, I won't really need the psychologist, but I might as well start somewhere. I think it makes them unhappy when you tell them you don't have any problems.

No nausea, no nothing. Went to market and lunch at a friend's house on Thursday. Cooked lunch for volunteer workers (on our house) on Friday, and had a 5-hour nap. Today, the little market in Rémuzat and voting against the privitisation of the post office. Why does the government want to privatise an efficient service which also makes a profit?

Life is a vast improvement.

New Surgeon

Very nice. Good looking. Speaks English, although we didn't. Recommends I read Douglas Kennedy. (Since I was reading Janet Flanner's Paris Was Yesterday, a collection of pieces from The New Yorker about Paris 1925-1939, do I assume Kennedy is "literary"?)

Can't operate until my "symptoms" have gone. I knew that. Apologised for me having to go all that way for nothing, but said he needs to see the patient. That's all right with me. The journey gets shorter with repetition.

AND WE DIDN'T GET LOST! GPS rules!

Tomorrow, chemo. Blood tests turned out all right.

Why We Are Getting a Bigger Bed

Bedtime with Miosa (sitting), Harry (white, sleeping), FloJo (calico, next to me) and the world's greatest invention:

The little dog (or bear) with long arms has LEDs in its paws, directed onto my book when I turn out the main light. Its head, on which rests my head, makes for a perfect reading angle.

Tonight I discovered it's also the perfect angle when you are BBQing and it's dark outside. It's supposed to be for kids -- huh!

Having been woken by the nurse at 10:30 this morning, I forced myself to get dressed and then went back to sleep in a chair until 5:30. Is life hard or what?

Tomorrow, Lyon and a consultation with the surgeon.

Not-So-Old Faithful

I would like to report that, when I fell going up to the garden today (I cannot believe the feeb things that are happening to me), Van-Ly arrived out of nowhere to first stand over me and then lie down next to me.

No serious damage; a few bruised ribs, I believe. When I fall, I fall flat out. Very peculiar.

Update

Not a lot is happening -- sort of a vacation until next Tuesday. Then I see the surgeon in Lyon and, on Wednesday, I either have chemo or a consultation with my new oncologist at Valence. I think my platelets are better. I knocked my ankle against the car last week and bruised it, but the bruise was gone in a couple of days.

I have had no luck getting an early appoinment with the urologist at Valence -- currently I'm scheduled for Oct. 21 -- but I have talked with the original doctor at Orange whom I like. He says they can't do any more until chemo has reduced the size of the tumour. They could do something major, maybe, but it's not worth it and I'll just have to live with the catheter for awhile. He reassured me that I'm unlikely to die of uremic poisoning in the interim, so that's a plus.

Like my cadeau? (French for gift.) I'm still in it at 4:30 in the afternoon. Of course I didn't get "up" until 1:30, so that's not too bad. "Up" means eat breakfast, check a bit of e-mail, see if the oedema can possibly make my legs and ankles any fatter, decide how I feel and, usually, go back to bed with a book and the computer.

I spent my entire adolescence in my room. Even my piano was there. I read stretched out on the bed and that's how I'm comfortable. A sofa might do, but we don't have one.

It's true I tire easily. I do something one day and collapse the next. After the market and paella party last Satuday, I slept until 6:30 in the evening on Sunday. I admit, though, that I take advantage. I figure some people fight illness by continuing, as best they can, with their daily routine. I've decided I save my strength for the inner battle. Har har; I like that one. Terminally lazy is another option.

Afterthoughts

Benidorm has great hats! This one arrived today.

Some things I forgot yesterday:

The doctor said we could make all the entrance arrangements for my visit in two weeks before leaving yesterday. We went back to reception and took a number for Hospitalisation. It was 968. The current number on the screen was 892. Ho, ho, not me! I'm not waiting. "Let's see if the skip a lot; doesn't look like so many people waiting," said Nick. So we sat. After about 5 minutes, as the numbers went by one by one, Nick turn our ticket right side up. Try it.

I won't have CA-125 counts every week from now on because Dr. Dranés says it's not very useful. However, the little bit of chemo I've had so far seems to be working. My CA-125 is down to 1686 from 2455.

New Oncologist

Her name is Dr. Dranés and, point in her favour, she talks. ("I'd be very surprised if the surgeon can operate now, but it's still worth the consultation.") I have another appointment with her in two weeks. It will be for chemo if my platelets are high enough (28 right now); if not, I'll have another consultation.

She's getting me an appointment with another urologist, Dr. Lopez. The first date he had was October 13th, so they're working on it.

I have an appointment with the surgeon at Léon Bérard on the 29th. See above.

Dr. Dranés said I'm not taking very high does of any of my million pain killers, so feel free to take extra morphine if I feel the need.

I feel more comfortable with my medical team now, but what do I know?

Long day. I'm tir-r-r-r-ed.

Léon Bérard

I spent five days in the Centre Léon Bérard in Lyon, the regional cancer research hospital.

As you may remember, they were having trouble finding a bed for me. The solution was, it seems to me, typical of their approach; they decorated a new one. The paint smell about knocked me out when I arrived, but went away the next day. Except for my feelings about florescent chartreuse, I was terribly pleased. They'd had trouble hanging the bathroom door, so I didn't have one for 2 days, but they got it sorted.

The food (in France, we start here) was magnificent. Thick tuna steak with pepper sauce; saddle of rabbit; roast veal; medallions of merlu. My appetite came back. 1 point for CLB.

They spent the week getting the pain under control. I am now on the complete assortment of pain killers known to medical man and it's working pretty well. 2 points for CLB.

They left me my own medicines and arranged everything in those divider boxes so that I could take them at the appropriate times. And also have some extra for top ups. They seemed, for some reason, to think I'm an adult. 3 points.

No one nagged me to get out of bed. "What is your expectation of the amount of time I should try to be on my feet"? I asked. "Whatever you're up to." Wow! I had a little tour of the floor on Thursday. They have a an exibit of old-time medical and pharmaceutical stuff, nothing as gory as the American College of Surgeons museum in Chicago or the Museum of Science and Industry. First walkies in over 2 weeks.

Then I tried sitting up while they made my bed. And I could! As to the beds, they are kept low like real beds. Makes your room look more like a bedroom and you don't need a rope ladder to reach the floor. If they have to do some work on you, they raise the bed and lower it again when they're finished.

I had visitors, too. People who have maisons secondaires in Rémuzat, but live around Lyon. So nice, that.

The chemo protocol is being changed again. Dr. Guastalla did tell me what the new one is, but I forget. I'll find out when I have an appointment with the oncologist in Valence on Tuesday. ("No, don't wanna go back to Montélimar." "O.K., where would you like to go"?) Evidently Carboplatine is too toxic for me; hence the continued fall in platelets and the need for all the transfusions. I had a complete blood transfusion this week, but the counts are not high enough yet to start chemo.

Monday morning I'll go see my GP, bring her up to date and try to sort out a urologist. I have to go back to one of the urologists I've already seen or find a new one as I shouldn't be walking around with a catheter without supervision. I'm going to try to find a new one at the hospital in Valence.

This was going to be a very entertaining post, but my neighbour came to visit for 3 and a half hours and I was otherwise occupied during my peak energy time. Too bad; I like it when I'm amusing, too.

On the other hand, Michelle and Francis have been wonderful to us. Visiting, bringing food and jams, bought me two pretty little canisters at the vide grenier (empty your attic = garage sale) last week and a "sanitary pail" that she found brand new for 2€. Now we can have people to stay upstairs. Michelle waters our plants if we don't get home in time and feeds the cats and dogs when we need her to. And Francis has been working with Nick every day to keep him going. I want to cry when I think that they're going back to Belgium at the end of the month for the winter.

But see what I mean about being lucky?

No, Virginia. . .

I am not moribund. If that were so, I'd probably be sulky instead of rolling in gratitude. I got a nice package yesterday, which triggered off the post. I don't say "thank you" often enough.

On the other hand, there is a less sunny side. I haven't been purposely hiding it; I'm just too tired to write about it. And crabby about being tired. Nevertheless, here goes:

I still have a blocked bladder and partially blocked kidneys. The new operation was not only not a success, I suspect it might not have been necessary. I can neither sit up nor stand up because of the pain, which means I've been pretty much bedridden for the last two weeks. My catheter bag is full of a liquid the colour of Victorian cranberry glass. Better than the colour of a vampire bite, its original shade.

The hospital staff are not keeping in touch properly with the Lyon doctors. Yesterday, the doctor at Lyon asked me to have my GP come for a visit and call him. We missed a lot of connections, but what should be happening now is that I should be going to Lyon on Monday to get sorted out. My GP let me know that there are other ways of unblocking my urinary system, so I'm not in imminent danger of dying of uraemic poisoning -- or an explosion. Right away, that cheered me up, although I'd written the other post already.

I think I'll go eat a chocolate truffle now. ;-)

Thank You

To those of you who send me little notes -- on and off my blog.

To those of you who send me thoughtful little gifties, letting me know that you're thinking of me.

To those of you who keep writing, even when you're not being answered personally.

To those of you who read between -- or even outside -- the lines and know that things aren't always as sunny as they might be.

To those of you who pass along information that may be of help.

To those of you who are just there.

Because you all help.

To Nick, who is just there, cooking cleaning, and transporting me; brushing, feeding and walking the dogs that he never wanted anyway.

I am a lucky woman.

O'Hare & Sahune

Our new home is beginning to remind me of O'Hare during my working days: somewhere to change planes -- or ambulances -- on my way from one place to another -- or one hospital or another -- waving to my very own bed from afar as I charge through the terminal.

Actually, I get to sleep in my own bed in Sahune; it's the constant movement that's getting to me.

I am reduced to using ambulances instead of taxis because I can no longer sit, only recline. I sure hope the surgeon is going to check this first catheter while putting in the others. Our friend, Stephane, whom I constantly feel compelled to say we've known since he was 10, is driving me. At least I don't have to feel embarrassed with him. He's spent a lot of time as a patient in ambulances as well as driver. Bad back.

So, went to hospital for chemo today. For the first time, I had a conversation with one of the nurses. Wish I'd thought of something to say before; she's very informative.

The reason I couldn't stay overnight is that the Gastro-Entrowhatever (Stomachology) unit is set up, but, for budget reasons is not yet staffed full-time. Today it was being used by another department and there were no Gastro beds.

She also explained the catheter procedure. Very interesting, if not terribly reassuring.

And here's the chemo deal. Evidently I was getting carbo-platine-taxol in the beginning. Now I'm getting carbo-platine-taxol one week, carbo-taxol twice and starting the cycle, again. Platine is too hard on the system to be given every week. I have more faith in the nurses than the doctors.

Since Stephane rolled me into the hospital on the gantry, I got a bed immediately. I later shared the room with a guy who also had a catheter. If they wanted us to make friends, the shouldn't have pulled the curtain between us.

Stephane is picking me up at 2:30 tomorrow, so I can check into the hospital at 4. Not sure when I'll be home, so this will be the last post for a couple of days.

The Wonders of Modern Medicine

How come I spent 3 days in the hospital for the catheter I'm currently wearing -- inserted without anaesthetic -- and I'll only be there for one day for the catheters in my kidneys -- which requires anaesthesia? Modern medicine is such a mystery.

Monday is chemo.
Tuesday is catheters.
This morning I had blood and urine samples taken. You'd think the urine would be easier to collect with a catheter, wouldn't you? Modern medicine is such. . .

After the blood-letting (I had 3 prescriptions), I went to see our former GP and put myself back on her list. She says that once they sort out my kidneys, I'll be less tired. If I sit, I sleep. Today I missed two visits from neighbours and 2 phone calls.

But not the one from our friends, Ann & Mike. Ann feels that we should be eating at their house regularly, once a week. Nick said to tell them we already are.

Week-End Retreat

As you know, I've taken to carrying a packed bag with me any time I'm likely to get near a doctor. Friday was to be the start of my new chemo routine. Same drugs as the original -- carbo-taxol -- but every week as opposed to every three weeks.

Thursday night we went to dinner at friends and my urethra completely blocked. (Nothing to do with Marcia's lovely dinner, I'm sure.) I kept thinking it would unblock, but it didn't and, by the time we got to the hospital, I hadn't emptied my bladder for about 15 hours. Chemo got shoved aside while I got a new catheter. And a room.

A few highlights:

• Argument with night staff over whether I had pain or not, resulting in calling Nick to come get me at 10 PM.
• Re-arrival in hospital at 8 AM. "Why did you leave?" asked the doctor. "The nurses insisted I had no pain and I was more comfortable at home."
• End of arguments about pain.
• Since I had bypassed Admissions and didn't have my own TV, my neighbour (or a private room) was kind enough to let me watch cartoons with her.
• Screaming match with another nurse whose temperament, I decided, was not suited to nursing. Later, I discovered she's an intern. She'll be perfect as a doctor.
• To be fair, once we straightened out who knows what, the staff were lovely.
• 2 sonars and a scan.
• Chemo -- at long last, chemo! -- Monday evening in the privacy of my room. I vaguely recall someone calling to me in the night, but the nurse decided to just let me sleep with the catheter attached. I was so grateful. They're very good about letting you sleep.
  
• A move from Surgery to Medical. Surgery has air-conditioning, but Medical have very effective fans. So we bought one on the way home.
• One of the orderlys, practicing his English as he wheeled me back and forth, wanted to know if I was going back up to Stomachology.

I got out yesterday, Tuesday. I slept today. The urologist telephoned. I have an appointment at 2:30 tomorrow afternoon.

Guess I'll go pack a bag.

What I Did On My Summer Vacation

Not a lot. We went to Dijon for the weekend to visit with a half-gathering of the family. St. Jean de Losne, really.

We ate, we lay under the trees and read (I was too relaxed to take pictures), visited the local book exchange (I came home with about 15), and had a puppy visit.

The dogs didn't want to come home and neither did we.

Awwwww. . . friends and hats -- and family

So yesterday afternoon, in anticipation of no hair, again, I went hat shopping on a great site sent to me by a friend's mother. (Thank you, Rena.) Didn't buy anything, yet, though. I tend to wish list until I have a burning desire to spend money.

Virtue is rewarded. This morning, what do you think arrived in the mail? Is this super or is this not super? All the way from Michigan. Thank you, Courtney!

I shall wear it to Dijon tomorrow. We're going up for the weekend to visit Nick's sister and a small gathering of the family.

New Deal

A few zillion phone calls later, I have a new program.

It's back to carboplatine-taxol, but this time once a week. More effective, I'm told. Three months of chemo and then another scan.

It ought to be interesting. They can give me an injection to keep my neutrophiles (some kind of white cell) up, but what to do about my platelets seems a bit up in the air. Evidently, my continuing loss is not the norm.

So: First appointment Friday, 21 August, unless the new specialist gets it moved forward.

I've found my old specialist. She's in Lyon, not far from my new one, he tells me.

Time to start hat shopping, again.

Had We But World Enough and Time

We don't, so here's the recap:

In the last 10 days we have visited hospitals and clinics in Carpentras, Orange, Avignon and Lyon, and two different GPs. How's that for a tour? All within about an hour of us, except Lyon, which is two and a half hours.

I have run into a stream of doctors who cannot understand how I arrived in their offices without papers, letters of recommendations, hospital records or, barely, appointments. And who sometimes seem more worried about my undocumented status than about me. I can understand that, now that I'm calmed down, but I finally told the urologist that I was more concerned about my own problems than his.

He took it like a man. Admitted me to the hospital, inserted a catheter for my evacuation problems, kept me three days, removed the catheter and sent me home. Meanwhile, he successfully obtained my hospital records, a letter from the oncologist I'd seen at Avignon, sent copies of everything to Lyon and talked to the oncologist there.

As soon as I'm up to snuff, he'll get a fawning thank you letter. My new GP, however, is history.

Visit yesterday in Lyon. Everyone at Léon Bréard was wonderful, kind and charming. By the time we were in the oncologist's office, my scans were being dumped into their computers by a nurse whose sole duty is for that. He got on the phone with a surgeon and they twirled my pictures around the computer while discussing my case. He was kind. Attentive.

The surgeon says maybe they'll operate, but they'll try chemo first to reduce the tumours, again. The ovarian specialist is returning Monday and they'll have a meeting to decide how to procede. After two treatments, I'll have another scan to assess progress.

I'll have treatment locally (in spite of my lack of enthusiasm for Montélimar), but Lyon will be in charge of me.

Bottom Line: The tumours are huge, but no other mestastesis except in the peritoneum where it's always been. Most of my blood counts are good. My CA-125 is 6,672. Who knew it could go so high without death?

I've been in bed for most of the week until yesterday. Now I am no longer in pain from the catheter and it's removal and no longer have symptoms of sciatica. I guess the pressure on the nerves has advanced to the point where I'm not feeling pain. Can't walk very well, either, but I prefer no pain.

To think that a month ago, I was painting shutters and contemplating jogging.

Oh, yeah, one more thing. You know those big girl panties you're supposed to put on and deal with it? I have the whole assortment.

TENA Pants

Click to enlarge

TENA Pants

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Quick update by Nick

On the visit to the urologist in Orange he admitted Margot to hospital immediately for an operation Friday morning to insert catheters between the kidneys and the bladder. The problem is that the tumours are squeezing and blocking the passage between these organs. The good news was that the cancer had not spread to the kidneys as we had feared.

The operation was successful although difficult because of the severely constricted passage ways. Margot is recovering in Hospital and although she is not very comfortable feels slightly better because of the action taken. Everyone aggrees that the visit to the specialist in Lyon next week is the next essential step as something has to be done about the growth of the tumours that are causing many problems.

This is just a quick update and I am sure Margot will post all the background details when she is home again which should be in a day or so.

Thank you again for all the messages of support.

Hubris & Nemesis

En français ci-dessous.

2nd edition with French translation. Warning: Using the French translation for academic purposes could be dangerous for your grades and ambitions.

* * *

I've been bragging on the French health system. Well, everyone's got problems. I'll try to keep to the short version.

As near as I can figure, another hospital is having staffing problems and the oncologist from my hospital is spending half her time there. Or something. Whatever, she has not responded to any of my phone calls for 3 or 4 weeks, so that I haven't been able to complain, yet again, that the current chemo protocol is totally ineffective.

In addition to being able to feel the tumours with my fingers, I am losing control of my bladder. To empty it requires pushing on my stomach and there are occasional leaks. I believe, but may be wrong, that the sciatica that is crippling me is not caused by my usual back problem, but the tumors pressing on the nerve. So, finally, I arranged for a scan elsewhere, had a series of blood tests and, yesterday, saw an oncologist at the cancer institute in Avignon.

The bad news: My CA-125 is over 2000, again, the tumours have about doubled in size (I knew that without the scan) and have probably invaded my kidneys. I have an appointment with a urologist in Orange tomorrow afternoon and there is the possibility of radiology or surgery following that. He'll do the evaluation.

The good news: I have an appointment at the Léon Béard Center in Lyon next Friday. It is "the reference" for research/treatment centers in the region.

How I feel: Angry, leg in constant pain, not very mobile, pissed off, not exactly frightened, but somewhere in there, tired (platelets down to 35), annoyed and vulnerable.

* * *

Mauvaise traduction du blog:

Je vantais le systeme des soins en France. Or, tout le monde a des problèmes. En court:

J'entends dire que l'hôpital de Montpellier manque des médecins et l'oncologue de l'hôpital de Montélimar passe une partie de son temps là-bas. N'importe. Elle n'a pas répondu à mes coups de fils depuis 3 ou 4 semaines, donc je n'était pas pu me plaindre, encore, que le protocol actuel de la chimio est completement inefficace.

Je peux toucher les tumeurs avec des doigts et je perds la mâtrise de la vessie. Il faut pousser sur la ventre pour la vider et, des fois, il y a des fuites. Je crois -- mais peût-être en erreur -- que la sciatique que me fait estropiée vient de la pression des tumeurs, pas du disque. Enfin, j'ai eu le scanner ailleurs, a fait faire une prise de sang et, hier, a vu un oncologue à l'Institut Sainte Catherine à Avignon.

Les mauvaises nouvelles: Le CA-125 est à plus de 2000 de nouveau, les tumeurs sont deux fois la taille qu'ils ont eu en mai (j'ai le dirais sans scanner) et ont envahi les reins. J'ai un rendez-vous avec un urologue à Orange demain soir et il y aura la possibilité de la radiologie our la chirugie après. L'urologue déciderait.

Les bonnes nouvelles: J'ai un rendez-vous avec un oncologue au Centre Léon Bérard à Lyon, la réference des soins pour la région, vendredi, 7 aôut.

Comment je vais en moi: fachée, jambe douleureuse, pas très mobile, fachée, pas exactement peureuse, mais un peu, fatiguée (plaquettes à 35), fachée, et vulnerable.

Physiotherapy

Stretch that shoulder

The newbie

The personal trainer

"Dogs" and Dogs

There are gypsy caravans parked on the place, where we usually walk Nala and Van-Ly, next to the river. The gypsies are here for the fruit picking season. In our area: cherries and apricots and plums. Lower down: those plus peaches and nectarines.

The gypsies have dogs and, after a couple of days, two of them got up the nerve to wander over and check out the action.




Our "dogs" do the dog thing and sniff butts. They are not, however, into reciprocal sniffing. Nala tries avoidance. Van-Ly lifts her lip. Before she can attack, I make her sit.

The two dogs kind of get the message, but after five minutes of no further activity, the brown one bounces down into a play bow in front of Van-Ly. Now if there is one thing that annoys Van-Ly more than some moron trying to sniff her butt, it's a moron who thinks she wants to play. I make her sit, again.

Nala would be O.K. if the dumb dogs wouldn't insist on acting like dogs. Van-Ly is hopeless.

Terraces and Terracing

We have had our new friend, Thomas ("Toe-mah"), over to see if he can dig out in back of the house to make our terrace. Maybe, but there is no access for the digger and we'd have to hire the big builder to make a road first. Big bills. But Thomas had an idea.

The unpainted doors to the right are where the workshop machinery will go and above it will be the living room.




You can see the problem in the cutaway Nick made. The house is built into the mountain.




Here's the potential machine room, finally cleared after 2 months. (The manger still has to come out.) I can't show you a picture of the room above because it's not safe to walk in there.
Before starting the workshop, we knock down the current ceiling and install scaffolding. Then we knock out the rear wall of the upper story (living room) and dig from the inside, dumping the rocks and earth into the workshop. The stone we keep for terracing, so the mountain won't fall on the house, and Thomas will cart the dirt away.


We'll have a smaller terrace than originally planned, leading from the living room, and a glass wall, slightly recessed into the room. Stairs will take you to the upper garden level -- level with our neighbours terraces.

This is the design that Nick drew.

Talk about lemonade from lemons!

Not Perfect

If you have a weak stomach or a highly-developped sense of privacy, you might not want to read this. Some enquiring minds want to know.

The new chemo protocol gives me constipation, which lasts about a week. Trust me; dire rear is better. Whatever the pharmacist gave me doesn't really work. Combined with the the pressure on my bladder from the tumours, by yesterday it was bad enough to keep me in bed and calling the doctor. Then, last night I got a migraine, which lasted through this morning. There is no point in my taking anything for it at night. For some reason the pills don't work if I'm sleeping.

It is now noon on Monday and I feel fine, again. But I did want you to know I'm not perfect.

By the way, my CA-125 dropped a little, but not enough to be significant. What is significant is that it didn't go up.

I think I'm ready for Wii-Fit, again. Birthday present from Nick. I love having my own personal trainer.

Fun Day at the Hospital

No, really.

My first roommate of the day was a woman who has been undergoing treatment for ovarian cancer for eight years . She has had 6 operations. She had all those things removed that I talked about a couple of weeks ago: bladder, intestine, anus, etc. But she doesn't have pouches. Her primary care is at a specialist research clinic in Lyon and she says the excision is temporary and then they put something back. I do believe I read something on the internet about that, but didn't understand it.

I almost fell out of bed when she told me she was 70. She looks 50. And, like me, she says she doesn't get colds or otherwise sick. (One of the nurses mentioned this phenomenon to me a few months ago.) "In fact," she says, channelling me, "if it weren't for the cancer, I'd be really healthy."

What more encouragement could I ask for?

I picked up my blood results on the way to the hospital. Good thing, because they were faxed to the wrong number. Anyway, I have platelets. Lots of platelets. More platelets than I've had since last summer.

Les Volets Bleus

or: The Blue Shutters.

Blue is the traditional colour for shutters in Provence. And, in the old days, farm carts, too. These days shutters come in every colour under the sun.

However, blue isn't my favourite colour, so for months -- literally -- we discussed colours. We first thought a natural wood tint, but then we'd see colours that we liked, then we'd think wood, then. . . we never could come to a decision. Eventually, we settled on navy blue. Tres chic on stone.

Navy blue, though, only comes as paint. I prefer staining (and treating) to painting. The stain/treatment applies easily enough that even your local Jewish American Princess can come up with a good result. Also it's softer against old buildings than paint. Lasts longer, too. And it now comes in colours.

When we finally went to buy the stain the darkest blue we could find was Blue Jean. We tried it and decided it looked good, personal preferences aside. So that's how we chose our colour: by default. (Would there be a market for a system called Default Decorating, I wonder?)

Tradition says that blue shutters keep the flies away, something that we foreigners think is kinda cute, but probably in a category with planting with the new moon and other tales from the paysans.

Funny thing, though. The paysans' gardens do better than ours. And I've actually just figured out about the blue.

The first light bulb went off when we went canoeing a couple of weeks ago. When I took off my flashy aqua tights (also known as ski underwear) and laid them on the ground, they were immediately covered with butterflies. Later, when I was staining the shutters and planning on telling you about keeping the flies away, I could hardly keep my paint brush ahead of the flies. So much for that theory.

But, no! That's the thing. The blue doesn't repel flies; it attracts them. And keeps them out of your house. Aha!

Remember this?

After:

I'm not crazy about the blue screen door, though. It may have to revert to a normal wood stain.