Mostly about dogs, but books as well. And sometimes I have other stuff on my mind. And now: a blog about my ovarian cancer.
Tuesday, 29 September 2009
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.
Monday, 28 September 2009
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.
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.
Thursday, 24 September 2009
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.
Wednesday, 23 September 2009
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.
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.
Wednesday, 16 September 2009
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.
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.
Tuesday, 15 September 2009
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.
Saturday, 12 September 2009
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?
Saturday, 5 September 2009
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. ;-)
Friday, 4 September 2009
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.
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.
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