Friday, January 29, 2010

Proof of knitting

G'day all!

Here I display Proof of Knitting!

2001_proofofknitting

Yes this almost pair of socks demonstrate that I am still knitting madly, when I can. I knitted most of the heel whilst waiting for my tests yesterday and have zoomed up the leg of the second sock. Only a centimetre of "pattern" to go and then I do the ribbing, weave the ends in and bob's your uncle! Finito!

Hmm, have I blogged the second chemo cap? The blue cotton one that is enormous and covers my head very well (a good thing cos I'm going to be bald as bald can be unless I try cold cap and even then it might not work. Yep they literally put a cold pack on your head to save the hair).

I have to say, the thought of being totally bald, completely naked of hair everywhere is rather intriguing. It is likely to happen with the chemo I'll be on. I don't think I'll look forward to the regrowth though - I get really bad ingrown hairs (which is why I don't wax any bits of me!).

We are going through money like nobody's business at present. We've spent well over $500 on paint for the walls and ceiling, and sanding floors for the house this week and I haven't even started to restock the kitchen. (Our house sitters very generously left us all the food we left behind 2.5 years ago.... thanks, guys! It was like walking into a shrine for the dead or something. Everything was as we left it.) So today or tomorrow I go off to Kmart (not quite as down market as the one in the US) to get various household items (chopping boards, colander/strainer, wooden spoons, cheap body pillow, extra pillows, water filter stuff) and Coles (supermarket) to restock all the basics that one needs for cooking breakfast, lunch and tea. I really hope that Adobe comes through with the money that they are supposed to cos at this rate, we'll have nothing left in a couple of weeks. If it comes to it, I guess we can go claim unemployment/sickness benefits cos we are Australian citizens and these things are available to us.

anon!

Radioactive Woman!

G'day all!

Jumped through more hoops today.

Had to have another mammogram today. I don't mind the frontal mammogram, where they grab the boob and plonk it just so and stand like that and head up! It's uncomfortable but not eye watering. But oh my the 45 degree angle one is a little more painful and the way you have to stand is quite difficult. I don't know how older women cope with it. I also asked about older ladies with a certain floppiness to their front porches - how do you get all of the boob on the xray plate? The answer? They don't!

2901_mamm

(That's a mammogram machine. Indeed that is the very machine that viciously attacked my right boob. It also attacked a man's boobs before mine. Yes, one poor chap had to have a mammogram done. He wasn't exactly well endowed with chesticals if he was the bloke I think he was. You can see the markings for where boobs should go on the upper plate. The xray plates go in the slot in the bottom plate.)

Then we did the ultrasound and biopsy. Again, this was very focussed on the tumour itself. Except they had to take biopsies of normal breast tissue. They anaesthetise the area then use a biopsy core thing that shoots a large needle in. They then can take tissue out of that general area. The biopsy thing makes a particular tocking noise that sounds quite plastic. Alas the anaesthetic is long worn off and my poor boob is telling me all about the nasty man putting lots of pressure on the tumour so it wouldn't move and the other nasty man shooting things into it and bruising it. (They were just doing their jobs and aren't nasty at all really.) The normal part is hardly whinging at all - it is vaguely sore but not outright complaining. Again I asked about how does one ultrasound the ladies of a certain floppiness and the chap said, "With difficulty." So I guess there are good things about being relatively young and perky!

Had my gated blood pool test too. This is a nuclear medicine test that involves having blood drawn. But first they pump a chemical into you that allows the tracer to attach to the red blood cells. 15 minutes later, they take a sample of blood so that they can attach the tracer (technetium-99m). Then you wait a bit longer. No knitting time in all of this cos there is a needle in your elbow which totally stops you from bending your arm. Very sad! Then you get taken into the scanning room and lie down on a cold table in a cold room (machine has to be kept cool). You get a three lead ECG attached. They give you a blankie to keep warm with. Then you get pushed into position and have to lie flat for 5-7 minutes whilst the thing images your heart. It is looking to see how well the heart pumps blood. A picture of the heart is taken at various stages of its pumping cycle (determined by the ECG lead results). They they move the reader to a different position and you lie there for another few minutes, and then you have to roll onto your poor biopsied side (in my case, others may differ!) and lay there for a little longer. I have NO idea how they interpret the pics cos what I saw was a vaguely pulsing lot of white dots on the screen. If I had seen such vague blobs on the in situ hybridisation I did as part of my PhD, I would've thrown out the stuff as being useless! But instead it is one of the most important tests they can do before chemo. Some of the chemo drugs attack the heart itself and if heart function is already compromised, the chemo drug can send the person into heart failure. If heart function is known then the drug cocktail can be tailored for the person.

So now I am Radioactive Woman! Yes, 99m-Tc is radioactive. I've been giving off gamma rays for some hours, but they didn't say I shouldn't do anything or that I should stay home or anything. I've already hit the half-life of it and by tomorrow I shouldn't be very radioactive at all. But I'll add a bit more radioactivity to my life on Wednesday for the PET scan (thought it was Monday, got my days mixed up!).

So we met the PiLs for tea at Urban Burger on Kingsway in Glen Waverley. They do gluten free chippies. Oh my do I love their chippies! Nom nom nom! So nommy I forgot to take a pic.

But even better?

2901_treat

My treat! A burger with lettuce, tomato, pickled beetroot (very Australian! Both the beetroot and its pickled status), minced (ground) beef, pineapple *and* egg! All on a gluten and dairy free bun!

2901_treatlabelled
(Nommed for your edification.)

Mmmm. Burgers with pickled beetroot (its usual presentation in Australia) and pineapple! All it is missing is the onion and it would be perfect :-)

I have nearly finished a "pair" of socks. Expect pics before the end of January. I think this will be something like the 20th pair of socks I've knitted in the last 19 months.

anon!

Wednesday, January 27, 2010

Hooray for a Modest Manor

G'day all!

Our house is ours again.

DH has been busy sanding floors and rubbing sealant into them. The only tung oil we can get locally is liberally doused with petrochemicals and smells quite bad.

We've been up to Bunnings and got some sample paint pots for the bedroom. Green, ranging from almost white, a minty/eucalypty green to a full on LIME! The lime isn't the right colour though, it isn't clean enough and even at 50% is a bit brighter than I want, not the right shade of green. The greenish white is too white. The midway colour is still too grey.

What is it with paint colours being grey these days? So few of the colours are true, clear colours, they are all dull. Dull and dirty looking. I don't want dull and dirty looking. Whoever started the taupe and bone and stone fashion should be shot in my books. (If they were, I'd be peeved because then my books would be covered in blood and possibly unreadable.)

Anyway, when I overpainted the white green with the remains of the lime, I really liked the colour. Typical! Now I have to blend the colours again (after I washed the brush). We are also considering painting the room one colour and overdaubing with swirls of other colours, in which case we should go with a pale green and overpaint it.

Then there is the study, which is a feral rose pink currently with two tone paint around the old-fashioned wardrobes (one of which was given away, one of which is storing some old clothes and a fur in the garage). Yep, they didn't move the wardrobes when they repainted. I am thinking butter yellow for that one, not too bright though. Oh butter means a pale yellow in the US (did we have many discussions about that!), what we Aussies would call lemon. To me a butter yellow is a bright, strong yellow, not acid like lemons, more the colour of pale egg yolks (not good orangey egg yolks). Maybe the colour of a butter cake?

(DH's opinion? As long as it isn't pink, mauve or dull, he loves all colours. Particularly orange but that is not a good colour for a bedroom! And I don't like orange for walls. Sunrises and sunsets, yes.)

We want to get the rest of the sanding and the wall painting done before the weekend. We can't sand at the same time as painting cos the wood dust gets EVERYWHERE and I'm not having it *in* my newly painted wall. Wood dust is brown, like wood, and that is a colour I am trying to avoid. I've ordered the floor sealant from a place in NSW. It is tung oil mixed with orange oil. It will stink but I tolerate it a lot better than I tolerate petrol (which is effectively what the other tung was dissolved in). We might need to put a runner (not that we have one) in the hallway for the nonce as there is no avoiding walking there. One has to to get from the front room to the kitchen or the bedroom to the bathroom (or any other part of the house, like the loo, which is at the other end past the laundry).

So we have a couple of days to do stuff, except... I have lots of medical tests on Friday I believe. Some of which will hurt. Whoops, forgot about that. Hmm, have to see if we can get the bedroom painted tomorrow so that we can get all our stuff back in there by the weekend (thereby allowing the loungeroom to be emptied so that we can rip up that carpet too if we wish).

Gosh, so much to do, so little time. So why did I spend most of the evening with my head in a book?

anon!

Sunday, January 24, 2010

Oz Medicare

G'day all!

Today I am a different one of the Seven Dwarfs. Today I am Grumpy. I think it is because the little car we've been lent has a terminal case of leaking water pump and the cost to repair it is somewhat more than I expected it to cost (over $500 vs the expected $100). $500 is a lot to fix a car but if it isn't fixed, it can't be driven more than about 25km in one hit and I was looking forward to driving up the hills and across to stuff on the other side of town. DH assures me some of it can by done by PT but that is tedious - eg 45 minutes into town on one train, 45 minutes out again and then a 2-3km walk to the plant nursery I'd like to visit. Then I'd have to lug plants back home again walking and PTing.

2111_foamybeach
(Some not very restful water to calm me down - the Pacific Ocean just south of San Francisco)

So I've had a couple of requests to talk about Medicare in Australia. Our Medicare is nothing to do with the US version. I am going to call it Medicare from here on, not Oz Medicare or Medicare AU. Remember this is for Australia only. Another caveat? This is *my* experience of Medicare, it is not an official thing. I know a bit more about it than the average bear because I used to work for an income protection insurer so I had to know how to read Medicare statements (to see what treatment/tests our clients were getting). If you want to know more about how Medicare runs, check the website.

Medicare provides health care for all Australians and permanent residents of Australia. We get a card with our name and a Medicare number on it. Kiwis also get Medicare benefits (as do Aussies in New Zealand under a reciprocal arrangement). Medicare does not provide health care for those on visas or illegal immigrants - they need to have private health insurance. Most medical care is free if you have a health care card (ie have a very low income, are unemployed, on a government pension, etc). The rest of us have to pay an extra fee - a co-pay in American terms.

Medicare has scheduled fees for various medical tests and procedures. Each thing a doctor can do or each type or surgery or test or anything medical has an item number. That number is associated with a scheduled fee. For example, a CT scan has an item number of 56807 and a scheduled fee of $560. If I am on a health care card, it should not cost me anything to have a CT scan. But I am not on a health care card so I paid $659.90. For whatever reason, Medicare does not repay me the scheduled fee, no I get back $490.90.

Last week I had $1,200 worth of medical tests. I had to pay up front. Yikes! I took the receipts to a "local" Medicare office. They repaid about $900. That money went into my bank account.

When I go to the doctor, s/he charges a fee. The local GPs (general practitioners or primary care physicians in US terms) charge about $45 for a visit (usually about 10 minutes). I pay $20, the government pays the rest. Longer visits cost more. I usually pay up on the spot, and the doctor's staff charge Medicare the rest (sometimes by swiping my card, sometimes by taking an imprint, depends on the surgery).

Say later on today, I am rather silly and get run over by a bus whilst crossing the road. The ambulance takes me to Monash Medical Centre (the local public hospital). My care there is free. Ongoing care for things related to the accident are free. If I say I have private health cover on top of my Medicare cover, I get access to things like my own room, etc. I don't necessarily get better health care, I just get access to "upgrades." I may still have to pay something towards the upgrades.

How do we pay for all of this? Through that most dread, foul word (for quite a number of Americans and some Australians) TAXES! Oh yes, my fellow Aussies, our taxes pay for this government largess. I pay an extra 1.5% for Medicare cover and I cannot opt out. If I don't earn very much, I don't have to pay the 1.5%. If I earn more than a certain amount, I start paying 2.5% instead (unless I have private health cover - another story!). Most of us are happy to pay this money because we see it as being right and proper and necessary for people to have access to subsidised health cover, particularly the elderly and the poor.

Where Medicare falls down is when it comes to "elective surgery." This isn't stuff like cancer treatment or appendix operations, it is stuff where it isn't immediately life threatening. Say you fall over the cat and wreck your knee. After you get it all checked out, you need a knee reconstruction. You go on a waiting list. You can wait a couple of years on that list, particularly if you want a certain hospital or a certain surgeon to do that operation. To avoid this, people take out private health cover, if they can afford it. It means that you can go to a private hospital and get your knee fixed a lot quicker. It just costs you and the insurer. You will still have out of pocket expenses. Eg if I wreck my knee falling down the stairs, under the plan I have I will have to pay $500 and $50 a day towards my private hospital cover as long as I go to a hospital in the insurer's network of preferred hospitals and providers.

Note that if you are willing to go to a different or maybe a country hospital, take potluck on the surgeon you have *and* pay a small amount of money, you can get the problem fixed more quickly even as a public patient. DH had a small issue that he had to wait for 2 weeks to get into day surgery in a small country hospital 50km out of Melbourne. It cost him $50 for the general anaesthetic, the surgery and the aftercare. A bargain!

If I have a heart attack, my care is free at a public hospital. But if I only have angina and need coronary artery surgery, I go on a waiting list to have angioplasty at a public hospital. If I want to get it fixed quicker, I can get it done at a private hospital if I am willing to pay $$$$$ or have private health cover and will pay $$$.

I hope this outlines how Medicare works in Australia. It provides subsidised or free health care for all Aussies (and Kiwis). It is paid for by taxes and a levy on high income earners. It looks after us. We can take out private health insurance on top of our government cover if we choose.




In other news, Nathan and a friend are ripping up carpets and sanding floors at our house today. I discovered that I have something like TWELVE boxes of fleece awaiting my pleasure! Some has yarn in it as well. Yikes! It is a pity there is noone who processes fibre here in Oz cos it might be easier to get it processed than try to do it all myself. I haven't played with the fleece yet to see if it needs rewashing or anything.

2111_hmb_jellylamps
(Not quite useless but very pretty lights that I took a shine to for some reason.... jellyfish lamps!)

Now to work out why I feel out of sorts. Maybe it's because I WANT MY CHEMO! I want my chemo so that I don't die. I can feel the lumps I have, it is hard to find bras/etc that do not rub on it and remind me that I have a Major Issue. Chemo might start at the end of next week. The appointments for my various tests have been made, well all bar one and that one might be in Frankston. The little car, if not fixed, will not make it to Frankston, and taking PT will mean a bus, a train and a bus, if any buses go in the right direction. Plus one test is going to be at 7:30 in the morning! I am awake most days by then but this means showering and getting out the door early. No breakfast either cos I have to be fasting. Ah well, I signed up for it full knowing what I'd have to do!

Or maybe today I am just grumpy. I can't figure out what I want. Normally I have some degree of self-awareness. I want to fill the gap in me that this diagnosis has created but there is nothing that can fill it - not the best wishes of friends and families, not a teddy bear, not Stuff, not anything but me working out what the hole is and how to fill it. What is it that I am looking for?

I think I am looking for a future, a future without worrying whether I have a future. There's plenty of little things to worry about without worrying about Big Things. I don't need the extra worry. Two months ago I was bold and carefree, ready to take on the world. Now I am having to take on me. That is much harder!

anon!

Friday, January 22, 2010

waiting waiting waiting v2

G'day all!

Currently, life seems to be rushing off to appointments interspersed with great periods of nothingness. Admittedly in the nothingness I am doing things like visiting our house and doing weeding and planning and stuff, harrassing the cats, or knitting

2101_hatdetail
(Showing longer brim on back of hat)

2101_sockdetail
(Sock now completed, second sock started)

spinning

1901_spinning

1901_spun

or reading up on stuff, but I am still in a holding pattern.

This time next week we will be back in our own place and getting established there again, learning what the cats' habits are now (and they will have to get used to us again!), finding out what we need to buy, etc etc.

I went and saw the head of the study I am a participant in. I signed myself up then discovered that I have another week of heavy duty testing to go through before I can start chemo. Blood tests, gated heart pool study, 12 lead ECG, PET scan, MRI scan, umm what are the other things? More, more, more! Some of the tests are necessary for the chemo, some are for the study. But I don't have any of the scans booked in yet cos the nurse who does that is not in until Monday. I want my chemo, dangit! (I don't want the side effects mind but I want my chemo!)

Waiting waiting waiting.

My first chemo cap that I am happy with reminded me of something.

2101_mehat1

I really hate seeing my forehead. Like really really really. Given I'm likely to be bald, I'll be seeing it a lot. (No, there is no point saying it is fine, you look fine, I don't feel like I look fine. Nothing to do with what others see, everything to do with what I see.) So that will be a challenge! And yes I can get a wig but I know very few people who have found their wigs are tolerable for very long and certainly not for a whole day.

In the meantime, life goes on. Tomorrow is my BiL's engagement party. Monday Nathan and a friend are ripping carpets up and I am taking our little car on loan off to get a leaky radiator hose fixed (it has a 750mL/25km water habit). Later this week, I have some fleece washing to look forward to (umm, I went to the handweavers and spinner's guild yesterday and wellllll they had some very nice fleeces, including a very pretty half of a spotty grey merino fleece that had some realy long locks in it :-D) and moving back into our house. Yay! Plus more tests, boo hiss!

anon!

Tuesday, January 19, 2010

Even more hoops

G'day all!

I saw the multidisciplinary clinic today (I don't think I've managed once to type disciplinary out without making a boo boo or taking five minutes to type it). They've discussed my case and agreed that I am an excellent case for chemo and also for the study.

So tell me something I don't know!

George, the oncologist I saw (who just so happens to be of Asian origin and looks about 15 but given he's done 12 years of higher education to be an oncologist means he has to be at least 27, assuming he finished school at 15 cos he is a clever clogs), outlined the first lot of treatment (chemo, four cycles of taxotere and four cycles of FEC, possibly not in that order). He said we are going for a CURE!

Why?

Cos my CT scan and bone screen yesterday were clear!

HOO-BLASTED-RAY!

I have been living in fear that my liver has mets or my bones (especially since I have a lump on the end of a floating rib but the chiro says that is likely to be because the ribs on the other side were rotated inwards, putting more pressure on the lumpy side, causing it to be lumpy. The lump is a LOT smaller now so it was probably some weird injury like I am good at giving myself). Metastasis means no cure, only ongoing management at best.

But I am not starting chemo yet. Oh no. If I am part of the study, then I enrol on Thursday, then have to have PET scan (part of the study) and they will arrange the chemo start date once the scan is done. Plus I need a gated blood pool study or some such to make sure my heart can withstand the damaging effects of one of the chemo drugs. I should be on chemo by the start of Feb if things work out. I hope so cos I want to hammer this thing before it hammers me.

Plus given my mum died of cancer and so did her sister and I've presented at a young age with a relatively rare (15% of breast cancer population) tumour, I should go to the familial cancer clinic too.

But I am in the system. So that is a good start. And I feel much happer now that the scans are clear. I'm not so happy about how sore I am after the CT scan! I had to put my arms over my head, stretched out and the under-used muscles of my shoulderblades and lats are telling me ALL about it today. Like non-stop, and sleeping last night was really difficult. plus whatever is in the iodinated solution you have to drink for the CT scan (not the contrast medium that the SF probe puts into you) made me bloat up like a balloon for a couple of hours. Farty-fart-fart-fart!

For those of you who would like to know more about my experience of the scanning process, heretis!


You have to drink this icky pretty pale green fluid an hour before the CT scan. I think it is iodinated. It is a bit bitter and not very nice but I drank all 500ml or so of it like a good girl. I read my consent form and ticked boxes and signed it *after* drinking the solution. Then I waited. Then I changed into a hospital gown and dressing gown. Then I waited. I waited with a lady a bit older than me, a man who was into his 50s and a businessman probably in his late 40s (I knew the latter was a businessman because of his shoes and his suit neatly folded into his basket). I got lots of knitting done - the heel of a sock and a third of a chemo cap. The radioactive stuff for the bone scan was injected and the little catheter was left in my arm for the contrast material for the CT scan. Then I got called in. The CT scanner is a new one, GE branded, very nice, a donut with a narrow bed in the middle. I had to lie down on my back, legs supported by a triangular cushion, back on another, arms over my head and not exactly well supported. Stay still, let the machine do its stuff.

Then the CT machine is started up. The xray head/receiver starts whirling around. You get a laser scan first as the bed moves through the donut, god knows why. You need to keep your eyes shut for this bit unless you *want* to go blind. Then you wait a bit and it says, "Breathe in." The machine gives you instructions. A green smiley face lights up whenever you can breathe or you should breathe in. Then it says, "Hold your breath," and the green smiley man turns off and the orange puffy-faced-holding-my-breath man turns on. So you get visual and aural cues as to what you should be doing. I had two scans. They take about 10 seconds each.

I was hooked up onto the contrast dye machine (OMG, looked like something out of an SF alien abduction movie, had a HUGE syringe enclosure, a syringe-y thing that was the size of a soft drink can but longer and a green light that wom-wommed at the non-syringe end, and a tube leading out of the business end). My arm had to sit up for this bit rather than behind my head. I asked the technician if I was going to have the anal probe as well. She said I wasn't having that today. *phew* I could expect the contrast dye to give me a warm flush, a feeling like I had just "gone to the toilet" and a metallic taste in my mouth.

A specialist rushed in, looked at me and said,"Huh" and the techs said, "This is the wrong woman." He rushed out again. The technicians said, "Be glad you aren't having what she is having." Most mysterious. I guess she was getting the anal probe...

The machine whirled again as it sucked me into its maw. That is when the contrast medium is pumped in I guess. The warm bit happened but I didn't feel really hot like some people do, the "gone to the toilet" translates to "just wet myself" but I hadn't cos all sphincters reported closed and skin said "not really wet just sorta tingly feeling" and the metallic taste could've been the aftertaste of the iodinated solution. "Breathe in. Hold your breath." One last pass and it was done!

12 minutes I was in there, I think. Waited for over two hours cos they were running a little late. $660 less 10 cents.

Then I was allowed to get dressed and go home for lunch, back at two pm for the bone scan.

"Empty your bladder," was my first instruction for the bone scan. OK! "Come back into the room, you don't need to get undressed, and lie down on the bed." OK! "It will take about half an hour. You have to be still." Yikes, OK! I get twitchy as soon as I am told to be still. The businessman showed up for his scan and smiled a little nervously at me, recognising me from the wait in the morning. He looked like a nice bloke and I hope his results are good.


Relieved of bladder contents, glasses and shoes, I lay on the bed, which moved into position. The scanning plate is probably 75 cm square and hangs over you on a gantry that lifts up and down depending on your thickness. As the scan started, it became quite obvious that my nose is the highest point on my body when I am lying on my back. This may not be the case for everyone. It was quite relaxing at first if I shut my eyes (having a big square thing 1cm from my nose was challenging), but then I realised that I could see my own bones on a monitor if I rolled my eyes to the right. I couldn't see any bright points (but I didn't have my glasses on either). When it moved over my pelvis, my bladder and loops of bowel lit up like a Christmas tree. One guess as to how the tracer is excreted! Nothing showed up on my legs or knees or feet, though my knees were brighter than my shins or femurs cos they have more bone and I guess more bone means more tracer. Finally the scan was done, and I was rather pleased cos one of my knees was trying to pop (my knees are very talkative) and a calf was getting twitchy. Then I was allowed to go.

As I was paying the bill ($1,200!), a friend walked up and said "Hi!" It was nice to have a chat with her husband whilst she was getting a mammogram, etc. If I can save one other person from going through this, my job is done!

One day I will have pics of my knitting, but not today. Soon, soon now!

anon!

Saturday, January 16, 2010

Onwards and umm yeah

G'day all!

Thought I would share with you the pic of the quilt top that I finished a week or two ago.

wonkytop

Wonky blocks sashed in Kona cotton (something like pacific blue or similar name). Nearly died when I discovered Kona cottons are $15.50 a metre here. Yikes! I was buying them on special in the US for $3.50 a yard, and apparently you can get them cheaper than that too. It really makes me think I'll cough up for shipping for material from the US, particularly if our dollar level pegs with theirs later in the year.

The quilt backing is done as well but is in desperate need of a good pressing. I took some pics but it really needed ironing and I do have some small standards in my picture taking. I naturally forgot to send the quilt backing home with me (a lime green sheet) and the first lime material I came across either was already faded in a strip across the middle or faded when I washed it and hung it out to dry. I ended up using some green strip and yellow polka dot to make the backing, along with a spare block and some leftover strips of material.

(Have I mentioned how much I LOVE having a washing line again? And how lovely clothes smell when they've been line dried? And how much I don't care that some things feel stiff and crackly cos if you shake them a bit or just plain put them on/use them they soften up again?)

Tomorrow I have to go for a couple of scans - a CAT scan and something else. PET? Can't remember. Not an MRI, not that yet. Whatever it is, it will take all day so I had best have lots of knitting with me! It will show more accurately if there is further spread of the cancer. The more info we have, the better but I really hope it is still just locally advanced breast cancer. More than that will be hard to cope with!

I saw the breast clinic on Wednesday and that was pretty good. The lady specialist (Jane Fox) was very good. She has a good bedside manner. No talk of Bad Things, she had me pegged as someone who has a Clue About Medical Matters within about a minute of me walking in the door, told me not to fuss over the pathology and suggested we go with chemo first to shrink the tumour. Also I can be part of a study if I wish - they want to look at how tumours respond to chemotherapy (FEC and taxol/taxotere plus something else). That means taking more biopsies along the way, doing more involved immunohistochemistry/etc on them (looking at proliferative factors and other stuff) and monitoring the size of the things with MRIs. I thought it sounded interesting and even though biopsies are not the most pleasant things, I figure that I will do it just to find out more about what is going on. Also maybe my life really is just to act as a warning to others, so knowing what this cancer is expressing in the way of genes could be useful for others in the future. Anyway, I thought Jane Fox was pretty terrific and walked out of there feeling somewhat more positive. If she follows medical specialist convention here in Oz, she is Mr Fox, and pretty fantastic too, may I say.

On Tuesday I go to the multidisciplinary group at a hospital that is not so handy to where I live. (I just realised a problem in that the little car we have is not well and will not make it to the different hospital - I should look up buses and stuff). The BC nurse was very firm that I should NOT arrive before 2pm and indeed I should not fuss about being on time because they very rarely are. Anyway, I wondered if I will get a spanking and be tied up by the multi-disciplinary group or whether they will finalise my treatment so that it will get started. I would like it to get started but maybe not before next weekend, when my BiL and his fiancee have their engagement party.

Currently, assuming the scans come up clean, it looks like I will have four cycles of FEC and then another four cycles of taxotere/taxol + ?. I believe each cycle is three weeks. MiL says that I'll feel totally lousy the week of chemo, lousy-ish the second week and fine on the third week. That is 24 weeks of chemo treatment and will take me through to mid-year. Assuming the chemo is doing me good (even if I don't feel like it is) then I have surgery on the Beast. After that? I dunno. Either more chemo or radiotherapy. I guess it all depends on how the tumour responds to chemo. Hopefully it will shrink right down and I'll only need a lumpectomy and axial dissection, followed by more treatment, rather than a boobectomy and palliative care....

So things are happening, sorta, slowly. I just wish we could get back into our house. Our house-sitters are dragging their heels about getting out and I just want to get back in! I want to be settled before the crap (chemo) hits the fan. I want to have the cats settled. I want to know what I need to get for the house before I start getting crook from stuff to make me well again. There will be things cos I don't know what will be left of our old stuff after it's been used by the housesitters, or what I will be game to use (eg wooden spoons will need to be replaced cos lord knows what they will have absorbed into them). All fun!

anon!

Friday, January 15, 2010

A real stinker - haipu

G'day all!

I am still alive. Still kicking. Breast clinic went well. More on that later.

But I need to share this with you. DH developed it from something I said the other day.

indelicate smells
waft across me, nose crinkles
my husband has farted

Is there any woman who prefers blokes who has not had this problem?

anon!

Monday, January 11, 2010

Touched

G'day all!

I would like to thank all of you who have commented or sent emails over the last few days. I am touched (in the good way, though I may be a bit crazy in the other sense of touched too!), truly really touched, and humbled. Thank you for your messages of support. I really appreciate them. Please excuse me if I do not respond privately to each and every comment (blogger doesn't send me your email address and also, I'm a little overwhelmed).

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I went for more scans today - chest xray and a liver ultrasound. Can I just say the liver ultrasound was more uncomfortable than I expected cos he pressed down a lot to get good pics, and I had to hold my breath whilst he did so. If my liver wasn't annoyed before, it is now! The ultrasonographer took lots of pics of my liver and gall bladder. Apparently when you lie down, your gallbladder flops anywhere it pleases, and when you stand back up it responds rather well to gravity and slithers downwards, making it hard to find. I hope there is nothing wrong with them, or nothing that can't easily be fixed. I would really like some good news about this cancer.

One of the Ravelry fora I am on was worried that I am not knitting. Well I am knitting, I'm knitting quite a bit, I just haven't got pics of my knitting cos I keep leaving the camera behind and I don't have space on my hard disk to download more pics (story of my life. 80 gig drive - you'll never fill that up!). I've also been fixing up some quilting ready to get it quilted (assuming I can afford that!). And I've been sitting at the parents'-in-law place, doing not a whole lot of anything really apart from cruising the net and knitting some more. I should put the projects on Ravelry but I'm lazy. And it is hot. And currently I am writing this post offline cos the PiLs' internet has died, most unusually.

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And I have been frying! It got to 43C today (110F). OMG it was warm! Indeed outright hot. I sat downstairs in the lovely airconditioning of our friend's palace (it isn't quite a palace but it is verra nice) all afternoon being horrified by the tv (too lazy to change channel) - Dr Phil, Oprah interviewing Sarah Palin (who?), Ready Steady Cook (cook up something delicious in a limited time from ingredients two lucky members of the audience have brought in), something godawful worse and umm the Bold and the Beautiful, just to top it off nicely. I thought I was in a time warp cos *exactly* the same shows were on when we left Oz in June 2007, just with different guests. (I think Judge Judy was on some days but maybe she was on a different channel.) There's a reason why I didn't miss the telly much whilst we were in the US.... This bodes for my upcoming bout of chemo. I'll need a neverending supply of DVDs. Save me from Oprah and the soaps! Otherwise I'll slit me own throat just to get away from the horror.

I left the poor little car we've been loaned under a shady tree but of course by 5pm this afternoon, it was no longer in the shade and had been broiling for a while. The car was so hot that after driving it to Scroatfight (Australian version of Joann's, have no idea of Brit or EU version), I could hardly touch the ignition key and the plastic end was all wibbly wobbly. The laptop bag was warm enough to be unpleasant to touch after only 10 minutes in the passenger footwell and I still couldn't hold the steering wheel without having a rag between me and it. My legs felt like they were in an oven. The car does have aircon but it also has a leaky radiator hose and I didn't want to stress it even further. So we had four* by seventy aircon. It's been ages since I've been in such an unpleasantly hot car. The Golf we had in California had a sunroof, which was excellent on sunny days cos you could leave it a little up and the hot air escaped. And whilst I think of it, my FiL put a number of lemons in the back of MiL's car at lunchtime. Car was then left to broil in the sun for a couple of hours. Voila! Cooked lemons! It really smells and tastes like cooked lemon. (the lemons, not the car...)

(*three actually - I couldn't wind the back passenger side window down from the driver's seat)

I admit to missing California - people said I would - but it is just as much because I was blissfully ignorant of having any serious medical condition. I miss the people and the things we used to do. We had set ourselves up perfectly there, now we are in limbo, with little of our stuff, with little purpose until we can move back into our place (by which time I hope I am into the treatment phase of this and expect to be incapable of doing much), and of course I have a Dread Disease. I am loath to go out and buy much stuff, even things we need, cos I am a bit worried about the future. No point buying stuff that I might not be able to use. I know I have the bad habit of buying stuff to fill the holes in my life, and at the moment the future is a great big gaping hole that no amount of Stuff can fill. I often dwell on the future, what will I be doing in a year's time, where will I be, what will I be up to in 5 years' time.... Now I'm not even sure I'll be here. It's a funny thing, this cancer thing and thinking about my own mortality. It makes my head spin to think this cancer has even odds or better on killing me. Oh yes, I get terrified too but it is the dizziness that surprises me most.

"Never tell me the odds."

The most annoying part is I look pretty good for a possibly dead person walking. A little drawn, deeper shadows under the eyes than normal, but otherwise healthy and fit.

2111_sunsetpigeonpt

(Today's pics are a selection from the sunset of 21st November 2009 when we drove down the coast from SF to ummm gosh, it must've been Santa Cruz. The sun set when we reached ?Pescadero? beach.)

anon!

Thursday, January 07, 2010

Not a good post to read

I don't have much good to say today. I don't suggest you read what follows.
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I really do mean it.
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I went to the doctor today to get the last part of the puzzle of my cancer. I am a complete mess. I am trying to think of positives - I need some positives. My breast cancer is triple negative. Along with the grade III, poorly differentiated cells and aggressive nature of my cancer, I am losing hope for a good outcome (ie a cure). Tamoxifen will not help me. I was so hoping that it would be estrogen positive cos everyone I know who has had tamoxifen has done well. I have to set my sights lower. Heck, I'll be happy if I am in any shape to make it through next Christmas. It will be a miracle if I am still around in five years, let alone still around and healthy. Every box that can be ticked for a bad outcome is ticked on my pathology report.

How much more of this can I take? I have serapax to try to calm me down but I am not game to take it before I have to drive. I'm terrified.

Effity eff eff eff.

Just as well that I don't believe in fate or people deserving the things that happen to them because heck, what did I do to deserve this? I've done nothing to deserve it. I guess I've done nothing to not deserve it either, mind.

On Monday I go for scans to see if it has already spread into my liver and/or lungs and/or ribcage (I have a lump on a floating rib). And this type loves to go for brains. I should call it the zombie plague.

What do I do if I get even more bad news? (I think I will shrivel up and die if it has spread cos that is my very worst nightmare. My aunt died of breast cancer and between her and Mum, I'd much prefer to lose my marbles like my father did, or drop dead of a heart attack. Dying of cancer is a horrid and foul thing.)

I am a complete mess. This cancer is very likely to kill me. I don't want to die. I haven't finished with this life yet. Where am I going to find the courage to fight the cancer? I thought I was strong but it turns out that I am brittle, like a mighty oak that can't flex before the storm. I have to learn to be a tumbleweed and bounce along with the wind.

Why me? Why didn't I find this thing earlier? Why am I so lucky as to be blessed with this horror? Some people would say that it is a test of my spirit and we get set tests that are hard enough to make us stronger and better people. I say rubbish to that!

I need to get myself into gear and start fighting. I need to pull myself together and get a grip on myself.

I need a miracle.

Saturday, January 02, 2010

Christmas Presents, catchup

G'day all!

I said I'd show off the pretties I got for Christmas, didn't I? I'm still enjoying Christmas, even though it is over a week later.

I'd show you the amazing things DH bought me but umm


see the space above?

That is what he bought me. Why change the habit of a lifetime?

I got a rose from one sister and a houseplant from my brother. We seem to have a bug about plants. My SiL rolled her eyes as three out of four siblings got together and started talking gardening, particularly growing our own food. She grew up on a farm and had to do it for real.

Dreamcatcher sent me a heap of yarn and a lovely little address book (which I promptly did not include in the pics). The address book has botanical prints throughout and is very pretty :-)

dc_prezzie

In that lot is some bamboo/merino sock yarn, "some" white merino laceweight, some lovely mauve/blue laceweight from the Yarn Yard, and two different lots of Regia sock yarn, one of which I've just started knitting today as my plain jane socks for taking to medical appointments. They won't stay plain jane for long though! I get bored and start adding patterns.

Thank you, Dreamcatcher! I can't wait to knit it all up. It has also expanded the stash I have access to by about half :-)

I've finished my first FO for the year but I think I need to make it a bit longer. It is my first chemo cap. Not that I have started chemo but I think I've finally persuaded DH it is going to happen. I'll need chemo cos I know one of my lymph glands is cancerous - it was the thing that made me go to the doctor's! I've also started accumulating various items of clothing that hopefully will be good. If they aren't, well most of them I bought on deep discount and four tops cost what one at the original price did (and that was not expensive).

I've also worked a bit more on the back of my wonky log cabin quilt. Quilts need a front (the "quilt top"), the batting in the middle and a back. The front is finished. I've bought bamboo/cotton batting. I have two of the three done. I'm making a pieced back. It should be pretty funky when it is done but silly me did something dumb, known as cutting 15" long pieces and then removing the selvedge. Umm. Ooops. Two pieces out of the row are just not long enough. 8-} Dang, now I have to unpick them. Plus the material I bought is not quite the right colour and to top it off, after washing and ironing it, it has very streaky colour. Quite peeving, actually! But today I found three cotton sheets sets (single bed, aka twin bed in the USA) for $7.50! Alas they were all yellow which is NOT my favourite colour but yellow can be overdyed to any number of lovely greens, and green is a colour I *do* like :-)

anon!