thereyougothen

It really is some level of absurdity when I have to take my own sink plug to the hospital to be able to soak my hand in sufficiently hot water to let a nurse put a cannula in, isn't it?

But I did that yesterday, and amazingly, my appointment went without a hitch. Evil/Useless nurse (who I now realise is the one who always treats me becasue she speaks English) got the needle in without any trouble at all. Very good wonderful nurse was back however and standing by in case it all went wrong.

I am claiming total credit for this however. I made sure I was prepared. Partly by being well hydrated and having a protein and carbohydrate laden breakfast. Scrambled eggs on toast, and usually I can't eat before about 9.00, so making myself eat at 7.30 is tough.

I had as hot a shower as I could cope with, drank as much water as I could starting the night before (how many trips to the loo in the night? I lost count!)

I took hand warmers and gloves, and a plug for the sink. We all know that if you run a tap the water runs hot, then cools down, then runs hot again. Well, for the last how many appointments, I've been running my hands under a hot tap. The last two appointments were lessons in how to torture people. So yesterday morning I had a bright idea, and took a spare sink plug that we had bought. And it fit the sink! So I was able to fill the sink with very.hot.water and soak my hands.

But it was a good thing that I had the hand warmers and gloves (and Noreen to apply them) becasue it was about 10 minutes after I had sufficiently heated myself in the sink that they got their arses in gear to stab me.

Anyway. I may have flinched, but it didn't even raise a gasp, never mind a yelp, squeal or tears.

But it's nothing to do with the skill of the nurse, it was all to do with my preparation. C'mon people! This is supposed to be Santiago's best private hospital. They are used to dealing with their chemo patients in an assembly line fashion - plug the line into a catheter that's been installed for ease of access. Never mind the patient's risk of infection, never mind the patient's state of mind. Oh, what's that on my chest. Oh yeah, it's that thing I need for my CANCER treatment. No chance of forgetting from one treatment to the next.

Do I sound bitter? I am, for all those people who have these things and don't need them. I know that some people *do* need them, and they make a hellish experience bearable (for instance if I had had to have evil nurse for all 17 treatments, maybe I would have reconsidered).

Anyway, I had been called the day before and asked to come in an hour early to see the Oncologist, at 8. I said I'd make it at 8.15. I asked if they would let the chemo nurses know that I would be early and they said yes. And they obviously did, becasue they were expecting me. But no one told the PHARMACY. Fuckwits. So I sat with a very slow running saline drip, and when the herceptin arrived I saw it had been made up at 9.45, which would be reasonable for a 9.30 appointment, but not for an 8.30 one. So I didn't really escape all that early.

Noreen was with me again, so we just sat and put the world to rights, and actually had as nice a time as you can with a needle in your vein.

Only one more to go! (Then a catscan which I don't want to think about in case it gives me unthinkaboutable bad news).

There will be a girls' night out with much champagne the weekend after I finish. (and before the catscan) My last treatment should be 6th May. Yay.

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.

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.

bleh.

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...

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?

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.

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.

we're off to Bath tomorrow, towing the trailer tent and hoping for the best.

i've been meaning to post about how great a day i had at woolfest, but for some unknown reason, i've been too tired this week to do anything...

had herceptin number three today, at the *hospital* instead of home. it seems there was a date missing on one of the forms that the hospital had sent to healthcare at home, and instead of letting the hospital know, well... so i had to go back in. and it took ages, i got there at 10.00 and they didn't start the drug until 11.10, i didn't get out until 1.20. luckily the boys were taken home by some friends after football, so i didn't have to worry, but still. i could have done without it.

anywya, i haven't packed a single thing. we're supposed to be leaving after lunch tomorrow. Bill has gone back to work and will be there for god knows how long working on an observing proposal.

we're stopping at a motel halfway down, we';re not going to try anf get to Bath in one day and put the tent up in the dark. but still, wish us luck?

i'm off to the western for my third cardiac ejection fraction test. the results of this will tellus whether the herceptin is affecting myheart function. if my results have dropped too far (i started out at the low end of normal, so they tell me) there will have to be a delay in my herceptin treatments until it recovers. ho hum.

wish me luck

So, this morning is my second herceptin appointment. And the first time I have had to go to Ward 1 on my own. Bill has too much work to do to be able to afford this morning off as well as this afternoon.

This afternoon may be even more nerve wracking than this morning's appointment. I have to stanf up in front of all the new parents for next year's Primary 1 and talk about the Parent Council.

But first I have to get through my appointment, and out the other side in time to collect N and get up to the school. But it's very exciting. Even TT was beside himself this morning with excitement that N is going for his school visit. He gets to see the classroom, we get to meet his teachers (well, we will have already met, but this is official) and I get to tell all the new parents how wonderful the parent council is... eek.

But I'm not looking forward to going to the hospital all by myself. But we agree that it is more important for Bill to come along for N's first official school visit. I'm a big girl, I can handle it. Both things.

Whichever, it's better than working. More on that in another post.

In other news, we have to wait at least another week for the official job offer. that means at least three weeks from hearing that he's got it, to getting any other details. aargh.