thereyougothen: (scary stuff)
you know, if it comes back to bite me, i'm not scared. i just assume that they will keep giving me herceptin. maybe someday it would stop working, but until then, why worry?

today my dad's cousin and his wife, and their two friends came to visit. i know, how unexpected is that, for mum and dad to be here, when B and P had booked a cruise from valparaiso leaving on sunday, and 3 days in santiago preceding it. none of this was planned on purpose. it would be odd enough for them to have a holiday booked here while we are here, never mind fitting in with mum and dad!

anyway. G, one of their travellng companions, is very tired, and not feeling well, not eating well. and well, i know and recognise those signs. She has a cancer of the peritoneum. and has dealt with 7 years of chemo and other nonsense. she had a 1.5 year remission, which was when they booked this cruise. but it has come back to bite her.

anyway, the thing is, i've spent the last couple of week both talking, and just thinking about how much i miss my chats with my neighbours and fellow travellers. i know that G didn't have breast cancer, so it wasn't exactly the same as a chat with someone who did, but how is it, when I have been really feeling the need to talk to someone who just, well, *gets* it, that she should come along?

i am so much more lucky than she is. but today i met a fellow traveller. and that is important.

when i filled out my renewal form for the international association, they had a space for comments, so i suggested that they have an experience register. i'll put my name down, so that periodically i can have a whinge about cancer and chemo with someone. i need that. it's not a bad thing, and usually i end up laughing when i talk to someone else who has been there. but i need it. just once in a while.
thereyougothen: (chile)
i got an email telling me that the insurance company has agreed to pay my herceptin bills without me having to pay up front and claim it back, which is good, becasue I believe each treatment costs $4,000,000 (or £4,000). but I obviously still have to pay for the oncologist consultation. and i'm supposed to be able to log in and do that online.

but i can't figure it out.

and i *think* i will be due a herceptin treatment next thursday, which means I need to see the oncologist (their need, not mine) before the treatment. but i probably won't get an appointment if I don't pay my bill. but i can't pay my bill.

thereyougothen: (scary stuff)
first herceptin here today.

the one thing that strikes me right away that is different? in Edinburgh, if it hurt me, they immediately stopped and found a different place to stab me. here? they keep going, even when i'm whimpering and crying from the pain. 3 stabs in total. at first they said they coulnd't use my right arm becasue it had the lymph nodes sampled, but they soon forgot that when it was obvious it was the only one that was going to work.

and these are nurses who have a reasonable grasp of English, so they knew i was in pain. they kept saying sorry, but kept going. it was awful.

i asked if i could put my hand in hot water, but i wasn't able to make myself understood.

i was given two different anti-sickness drugs by IV - I never had IV anti-sickness even for chemo, and none at all for herceptin. here though - herceptin *is* chemo. i didn't know how to refuse them, if they had been tablets i would have just said no, but it was an infusion, and it was on my prescription, and I imagine they would have had to call the doctor and get him to agree, and that wold have marked my card for sure ;)

i woulnd't be so worried, except that they can make you drowsy, and i have my children to collect. by car. i've had a coffee, and i'm ok. but still, why are they giving me drugs I don't need?

herceptin is chemo. heh. they don't use psychology on their cancer paitinets here then - at home, "you're all done with your chemo now! just the wonder drug herceptin to go!"

oh, and herceptin has to be kept in the fridge. here it must be as cold as you can get it without it freezing. my whole forearm is *still* aching from the cold.

thereyougothen: (scary stuff)
this was a tough morning,  i wasn't allowed coffee. or food.

went to the hospital after dropping the boys off.  waited until they found an english speaking person to take us up to see the oncologist, then sat while he read my referral letter.  why didn't they give it to him beforehand?  i would have been happy to sit with my sock for ten minutes in the waiting room, instead of awkwardly on the other side of a desk.

anyway, he eamined me, which I should be used to by now.  weighed me. and he was the first doctor in all of this who told me to lose weight. in fact he said that while the herceptin was important, losing weight was even more so in stopping the cancer coming back. hmmm.

i admit that i have been surprised that no one ever said anything about it (well, no one expect my mum!).  but that was pretty blunt today.  he said, " it's spring, there is a lot of nice fruit in CHile that you can eat" LOL.

he took us in to see the chemo suite.  very posh comfy looking chairs. and very small, compared to what we are used to, unless there's more around the corner.  I have an appointment for 09.00 on thursday, which is exaclty 3 weeks snce my last treatment.

then we went back to the nice english speaking head nurse, who i am to contact for everything, from major illness to ingrown toenail.  we asked if we could have a pro-forma invoice so that we don't have to pay in advance, but she took us down to the finance place and they took a copy of my insurance card and said that they will get a reference number from the insurance people and will be able to bill direct.  I am VERY curious as to what it will cost.

and they never took blood or anything, so the starving was a total waste.  thanks people.  getting up at 6 is tough enough.

then we left, and Bill dropped me off at Beverly's house, where I was plied with coffee and cookies.  I was offered proper breakfast, but settled for cookies!  absolutely fascinating conversation centering around teachig reading to kids.  we were all mothers, 3 of us with 2 sons, one with a 9 month old daughter.  2 educators - one a long time teacher of reception class in the english system, the other a remedial reading (possibly not the modernly accepted term, I must ask her) teacher in US middle school.  AND - Beverly loaned me a set of Biff, Chip and Kipper books for N.  He won't get them here, and we LOVE the magic key stories, so we will read them with him.  And with TT, who wanted to sleep with 2 of them under his pillow tonight.

we have finally found fresh milk after almost two weeks of UHT. it's "ultrapasteurised", so Bill says it still doesn't taste as good as at home, but when i suggested I wouldn't bother buying it again, it suddenly was almost as good...

Bill signed (i am a non-person) a letter of intent to rent a house today,  hopefully the landlord will agree, and then we all traipse off to a notary public to sign the actual lease  (well, for Bill to sign, I just get to watch).  we might get to move in a week today!  hurrah!

and I have to get up at 6, so I have to go to bed now.  06.00 is murder.  
thereyougothen: (scary stuff)
ladies, I give you (well, not me, obviously, I'm not going to give you one) Breastlight

For an exclusive-to-Facebook price of *just* £49, you too can see your breasts in a new light.

I suppose if it gets more women looking at their breasts, it can't be a bad thing, but my goodness, isn't technology MARVELOUS /sarcasm
thereyougothen: (scary stuff)
the oncologist called today. to let me know that he's written my referral for the chilean hospital. "it's got a few hand written corrections, but if it doesn't make sense I'm sure you can sort them out" eh? WTF? his secretary can't audio type, or he changed his mind after he wrote it? or maybe just afterthoughts. I will find out since he's sending me a copy...

he also thought he'd better check that i understood just how expensive herceptin is. like £15,000 to £20,000 for the rest of my treatments. i said that Bill had asked the insurance company, and that they had said that as long as it is an infusion, it is covered 100% (imagine having to pay a co-pay of 20% of £20,000?!!) he was relieved that we had looked into that already. imagine arriving there and finding out out that we can't afford my treatments!

well, in some countries, i'd have only had 6 anyway, so i've already had 7. but i'm due 17. i'm sure the chilean doctors will be happy to give me 17, if the insurance company will pay for it.

hmmm, thank goodness for the firefox spellcheck, because i've obviously had that number of glasses of wine that causes my fingers to not do what i want...

off to bed with me. i was too tired to walk to school this afternoon. i left the house at 2.30, walked about 50 metres and realised that i wasn't going to make it.

Bill is away. i am single parenting for a few days. i think that the tiredness may get worse...
thereyougothen: (scary stuff)
Ouch. my hand hurts. it's feeling all bruised. doesn't look it, but feels like it. same nurse as the last two times, so she knows how to get into my veins, but she had to shoogle the needle a bit today to get it in, so I'm sore. and my hand started to cramp up after a while because I have to hold it so still when she uses a butterfly.

Never mind - there was good news - my heart scan score was actually 54% - the 51% percent was the preliminary reading and it must have been changed after analysis. so i'm relieved by that. Still 1% up on when I started chemo.

doesn't stop me being tired though.

I was supposed to be going to the supermarket after the boys went to bed, but someone has come to look at Bill's 748, so I had to stay home - it's a relief, actually.

"actually" appears in just about every one of Nico's utterances.
thereyougothen: (scary stuff)
saw the breast surgeon today. turns out I didn't really need to go since the oncologist had done a physical exam and given me the results of the mammogram. and the breast clinic won't be sending a referral to Chile, the one from the oncologist is all that's required.

however, seeing as I was there, he examined me anyway. and to be frank, the oncologist isn't an expert on reconstructed breasts, so it doesn't hurt to get the breast surgeon's opinion. which was that it is a very good job. a very good job indeed.

and I have to say I agree, especially when it's in a well fitting bra. (I've just ordered 2 swimsuit patterns, we'll see how it looks in one of those)

So, except for probably 2 more herceptin treatments (unless my 51% is too low) I'm free and clear to go.

even though I knew that the mammogram was fine, I was still shaking in the waiting room. and you always have to wait ages in the breast clinic. but it's done. so we went for a cup of tea and slice of cake before retrieving the boys.

so, it's a whole year until I need to worry about it again. ok, so there's still another 11 herceptins and 4.5 years of tamoxifen, but we won't think about that. no more follow ups. (oh, unless the chilean hospital decides to do their own. damn. there goes my bubble.)

and there's a bottle of fizz in the fridge. hard to believe it's been a whole year, eh?

34 sleeps

Sep. 23rd, 2008 09:25 pm
thereyougothen: (chile)
what did we accomplish today toward moving? I'm not sure there was anything. oh, yes, we freecycled my old breastpump and all its bottles and attachments. but even so, it wasn't very big. the recipients very kindly gave us a tin of low caffeine but still proper espresso coffee. that was lovely. we shall try it when the current packet runs out.

was there anything else?

i had my last parent council meeting at preston street. i was very sad, and i burst into tears when they gave me a very (very) big bunch of flowers. there is a photo, i will upload tomorrow.

have been a bit down since this afternoon - had my heart scan, and i'm down to 51%. i was 53, 53, 55 (remember my jubilant posting?) and now down to 51%. Herceptin is "cardiotoxic" so I suppose it's not surprising. the radiographer asked me if I'm tired. um, yes. and I'd been wondering why. all the nurses keep saying "no matter what the side effects are supposed to be, I think herceptin makes you tired" well, yes, especially if it affects heart function, and if your heart isn't working as well as it used to, you might get tired. I guess that's a no-brainer.

well, I will probably have to have another of these before the Chileans will give me any drugs. and the Chileans won't have Winton, who is the "superintendant radiographer", all round nice guy, and super talented at finding difficult veins. I think he would be willing to travel, but I doubt the insurance company would cover it.

we have had an unbelievably expensive quote from an agency for shipping Quirk to Santiago. so maybe we'll be doing it all ourselves after all. unless anyone I know wants to go into the pet export business??

tomorrow the school is closed because of the unison strike., i think we are gong shoe shopping, sadly not for me, though...


Sep. 22nd, 2008 12:34 pm
thereyougothen: (scary stuff)
saw the oncologist this morning. he's a nice guy. he was able to access the mammogram report. normal.

i am not dreading thursday anymore.
thereyougothen: (scary stuff)
went for a mammogram this morning.  they're not nice, really, but hey, this year it was only half as bad as last year....

treated myself to a shopping trip afterwards.  got myself 2 new bras in debenhams, and bought tea out of marks and sparks.

we did Bill's birthday again today, with cake and more presetns, since there was no cake on his birthday.  i had thought about taking a cake down with me, but then figured, no, his mum will have made him a cake.

well. we had cake today instead.

phone call

Sep. 10th, 2008 07:24 pm
thereyougothen: (scary stuff)
i suppose this isn't obvious to anyone but me, but what is scaring me is not the possibility that I might have got cancer in, as they call it, the "contra-lateral" breast. it's that if I have, it will totally screw our schedule for moving and Bill's new job.  it doens't mean he will lose the job, but we will end up having to put if off by a couple of months if I need surgery.  or maybe not, now that they've used up my spare tummy, maybe there'd be nothing to use?

anywya, if I need more surgery, well, ok, I'd have to have it, there are no decisions ot be made there, we'd just get on with it, but all our plans change, and well, we'd have to tell everyone, for one thing.  and we're all psyched up to go in a couple of monhts, and what if we don't?  it will feel awful.

so anyway, i called one of the breast care nurses, she is trying ot get me an early appointment.  my consulant is going off on holiday, so I will have to see another.  last time I was there, my consultant was off on holiday and I had to see this other guy too. whihc means he's the one who was left to give me that bad news about the invasive cancer and not have any answers to give me.  so i'd honestly prefer not to see him, as it may bring back all those feelings of shock and fear again.  but if it's him, or wait until October 7th, I'll take him.

we are hoping that I can get a mammogram first and have the results available at the clinic appt.  usuaklly it's done the other way roud, which is crazy, if you ask me.  anyway.  that's where we are.  i called.

can't be arsed fixing typos today...
thereyougothen: (scary stuff)
i have to phone up and get an appointment at the breast clinic.  and i just can't do it.  if we weren't leaving, i could just wait until they send me an appt, but i can't wait that long.

i really really can't bring myself to make the phone call.  but i have to.  i'm just scared that i will have developed cancer in the other breast. 

i'm tired, stressed and scared.  not a good place to be.
thereyougothen: (scary stuff)
whew. much better today.

The boys were once again completely uninterested.

 the nurse arrived when she said she would, didn't piss about, looked at my veins, decided to use a butterfly in my right hand, and just got it sorted.  it did mean that i had to sit with my hand still for two hours, but that was ok, becasue we had a really rather interesting conversation.  She had spent 5 months in South America.  Been to Santiago, and lots of other places.  So I got to pick her brains.

We're going to move my treatment by a couple of days so that I can have the last one here as close to our leaving date as possible, so my next one will be on the Thursday, the one after that on the Monday and the final one on the Wednesday before we go,  which is a full week later than it would have been on the original schedule.  that gives me more time in santiago to meet the doctors and get a bit settled.  hah,  a bit settled. in 2 weeks?  aye right!  but still. better than having to have the treatment n
 the first week there.

This morning I took both my dead desktop computers to the PC repair man.  (that *is* what the shop is called!)  Two guys, really nice, not at all condescending, unlike the local shop I phoned up the other day "I take it you don't know anything about computers then"...

It should be £80 to get the pair of them fixed - to wipe and restore the old one, and the newer one will get wiped, but they will try and recover the data.  Hopefully they will be ready in a couple of days.  I need at kleast one of them back to programme an embroidery for a staory sack i;m supposed to be finishing ove rthe summer holiday!

We're off to London on Thursday.  It was supposed to be a campsite near Castle Douglas, but well, it's pissing down still, isn't it?  So we're getting the train (hurrah!) to London.  Back on Saturday night.  Yay!  A holiday.

5 needles

Jul. 24th, 2008 04:11 pm
thereyougothen: (scary stuff)
it took 5 sticks to get me stuck.

1. back of left hand
2. back of left hand again
3. left elbow
4. left wrist (most incredibly painful bringing tears to my eyes needle stick i have had in a long time)
5. right hand, successful

becasue i still have all my lymph nodes it's acceptable to have the drug in my right arm, but not the preferred option, since i still had my lymph nodes "injured" by sampling. but if it's either that or no treated, it's doable.

i have a lump on the inside of my left wrist now. it's sore and black and blue. great.

the boys watched telly through the whole thing, completely unfazed. completely.

Margaret is very nice, but I don't know if it will be her next time or not.

i didn't get to knit today, becasue i had a lot of stuff to sign. which of course means that fact that i had the needle in my right hand was much more convenient in the end.

so it was fine. next treatment i should be back to wednesdays, so it should be 13 August. i'll get a call the day before.
thereyougothen: (scary stuff)
i'm feeling incredibly ambivalent about this herceptin at home thing. one of the nurses at the western told me that there were people who didn't want to have it at home, and preferred the hospital.

ho, not me I said, who wants to come here every 3 weeks for another 15 doses?

well, now i think i understand, it's not about fear or anything, it's more about keeping parts of my life separate. oymygod i'm bringing the cancer home. well, not quite so melodramatically, but you get the picture.

we'll see how it goes tomorrow.

just off to check and see if I can get the telly in the playroom (the one we set up for barbara to never watch, and not tell us when it didn't work) to work so I can put the boys i front of it tomorrow afternoon. at least while the needle goes in.

I'm guessing the healthcare at home nurses don't have the same "only two sticks and you're out" rule that they have at the western. there's only one nurse coming (her name is Margaret), so either we'll be very lucky, or she'll have to stick me more than twice. urgh. must remember to drink lots tomorrow. and clean the downstairs bathroom tomorrow morning. it's not really dirty, it's just that it looks it with two small boys using it. but if I have to drink gallons to help the needle go in, i'll be having to make use of the facilities.

Bill, is, I believe, really rather ambivalent about the Chile thing.
thereyougothen: (scary stuff)
my healthcare at home nurse called me today. she understood that i had requested thursday at 2pm. I had done no such thing, I had been told that I had to have thursday because wednesday, which is my day, was too busy, and 2pm was what was suggested to me so I just took it, and figured that I maybe woulnd't try and farm the boys out because there's a chance that Bill might be home by then.

anyway, the nurse on the phone kept saying it was all about convenience and what suited me, but then said she might have to come closer to midday and wouldn't that be better for me. well, no. actually, i've been planning on 2. but my guess is that i will be her last call that day and she wants to finish earlier. i can't argue. but i'm pissed off about being jerked around. so i haven't made any arrangement for the boys, so now they will be here. the nurse isnt' bothered, but well, it's not about her, is it? i didn't bother to warn her that i can reguarly take 3 needles to get a vein, and I don't want my kids watching that. so i will have to sort the telly in playroom out so that i can put them in front of that at least until the needle is in.

i have askwd her if the rest of my appointments can go back to being wednesday, not least becasue i have it written in my diary and on the kitchen calendar, every third wednesday. i just assumed the would work to my schedule, because you know, healthcare at home is all about the patient's convenience. my arse.

and i have to then sit here with a stranger in my house for over two hours. maybe going to the ward isn't suc h a bad thing after all.
thereyougothen: (scary stuff)
so, i guess the car should be in the shop more often. either that or it was the combined luck wishing of my FL.

my heart function has increased by 2% to 55% according to yesterday's scan. that was after a week of walking and getting the bus as the car was in the garage. exercise seems to be good for one. hmmm.

the 55% is a good place to be, as that's the bottom limit for getting herceptin without anyone worrying overmuch. so yay, looks like I might not need to have any more extra scans. i don't like these scans, and if IN only have to have them 12 weekly instead of 6 weekly i will be a very happy girl.

more walking around will be done this weekend at woolfest. i'm sure that will be good for me too!


thereyougothen: (Default)

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