tired

wondering if maybe don't have the energy at the moment to work hard, and then go out at night. Cos feel so tired and yesterday was hectic: work, lunch out, the theatre at montecasino to which I drove with two friends, then came home, did washing, read and cooked. Today feel wrecked but then suppose I could be in bed and it's almost 10.20pm but never go to bed now (maybe i am inflexible). Tomorrow got another busy day followed by supper at Mando's and then the opera. Oh well, we'll see how it goes.

some verbal snapshots of the past few days

Been back since Monday evening but been so busy since then am exhausted. Went to the theatre last night and saw a kak dance show - tomorrow night seeing the African opera Princess Magogo www.operaafrica.co.za/princess_magogo.htm which I am looking forward to - plus work has been extra tiring as have to make up for Monday which was a public holiday.

Anyway, just some moments from my time offline:

* passing places en route with names like Clocolan www.adventurezone.co.za/where_to_go/Town/Clocolan/549/


* seeing sheep grazing in the open field next to the house I was staying in, a young shepherd - he could not have been older than 10 - hitting them with a stick if they strayed


* trudging the market in Maseru en.wikipedia.org/wiki/Maseru, the capital of Lesotho, eating a mielie (corn on the cob) grilled on a brazier


* watching the pride on birgit's mother's face - birgit being the bride at the ceremony which welcomed her to her new Sotho family - when she was handed a Sotho blanket www.futureshock.co.za/basotho.htm and proudly put it on www.malealea.co.ls/basotho-culture/basotho-blankets.html

* buying a sesheshwe cloth skirt freshlyfound.blogspot.com/2007/11/shwe-shwe.html which I am wearing now for only R50.

phew! blood tests are fine

Relieved. Blood tests are fine so leaving or lesotho tomorrow morning. Throat still sore but as I thought, clearly it's nothing major. Cannot be thrush I don't think if immune is fine but just in case, stopping off at pharmacy to buy more "liquid daffodils".
A bit disappointed that I am not getting to be in charge of something I wanted to be in charge of at work, but hell, guess it's good to have a strong emotion about something that is not cancer related for a change!
And anyway, one thing I have learnt here is that things change. And I maybe I can defiantly worm/wriggle my way in there (not anything official like I applied for a job here or something, just expressed an interest in it and deservedly so, but c'est la vie....)

So here's to a lovely weekend. Not going to be updating till my return.

bizarre state of affairs

Am in the process of packing for a holiday I am not sure gonna go on. Throat is damn sore but not sure it is thrush as last time it wasn't just sore on its own but only when I ate and this time the liquid daffodils emulsion is not working.
Son I phoned the oncology centre and they told me to go for a blood test, a full blood count, which I did tonight.
Which brings me to the packing.
If my blood test is ok, and it's just a sore throat, I can go away. If it's not ok, then I cannot go. And who knows, might need antibiotics and ... I am speculating.
In the interim, I am packing as if leaving straight from work.
And as it's a road trip, I am not restricted by anything like weight or whether or not my case is easily manouvered, so I am piling in the clothes although, ironically, even if I do go, can only go out to the wedding on Sunday night and then able to go out again on Monday, which is also the day we would be leaving (Monday is a public holiday). So why I need all these clothes, I dunno.
Anyway.... here's to getting the blood test results tomorrow.

voting day

Voted today. Was a bit of an idiot and should have arranged special voting ahead of time (this is during my post-chemo immune-compromised week) but I didn't and survived. Ok, did not realise when I went to vote at crack of dawn, well, arrived there just before the polling station opened at 7am, that I had mild throat thrush but luckily most of the queing was outside and then when there was a crushed bit in a narrow passage, I wore my scarf over my mouth and nose and then when saw an escape route, waited outside till I could rejoin my place in the queue.Then was damn careful that when they took my hand, first to place a thumbprint on a piece of paper 'cos was not voting in my constituency, and then shortly thereafter to put an ink mark on my thumb to show I had voted, that they did not hurt me. Just said: "I have a problem and my hand is sore; please be gentle".
Anyway, great camaraderie in the queue and all in all a fab experience. Now for the results!!!
Oh, back to my throat. Have throat thrush again. Again it hurts only when I eat but this time can eat soft solids. Taking loads of my liquid daffodils (not being negative by calling it yellow gunge anymore) but it's still there. And cannot take too much. Last night doubled the dose (leaflet says you can do that) but it made me throw up which just made me cry so being a bit more careful today.
But did decide to stay indoors today. So although not at home, did not pop into the office today as had intended to. Fak the good PR I thought it would be, just plan on going in earlier tomorrow. My health and wellbeing is far more important and having throat thrush is an indication of a low immune system so the less people I come into contact with the better.
And been reading which is great. Hoping to finish my book tonight, if I don't spend too long chattering away on facebook! It is Reginald Hill's A Cure for all diseases - a Dalziel & Pascoe novel. Not brilliant and took ages and ages to warm up, but not a bad thriller.

how can i be funny if i have a sore throat?

Everyone (ok, that's an exaggeration), about two people have told me that they have enjoyed cancer blogs which are funny. Sure. So how do you get to be funny if your throat is sore and you think it might be throat thrush again? Or how do you get to be funny if it's just a bloody sore throat - something which is gonna stop me from doing the one thing I am looking forward to.
Getting used to the idea (well, sort of getting used to it) of not being able to plan beyond the next two weeks when I go for tests but have one thing before then I am really looking forward to: Sunday night. IF I am well can go to this wedding in Maseru in Lesotho which is on the last night of my immune-compromised week. But only IF. And now not feeling too good. "Want malaria pills?" asked my friend now. "Malaria? What for? What do you mean?" "Well, you are taking everything else!" And it's true. Throat lozenges, liquid daffodils (my new, positive name for the yellow emulsion which works for ulcers and throat thrush) as well as Panados.
Oh dear. And anyway, I am hardly funny anyway, cancer or no cancer, impending throat problem or no impending throat problem.
Oh, it's elections here tomorrow. Maybe that is a joke.

fragile - chemo is not just about hair loss

I am more fragile than I like to admit. Realised that tonight when I felt so awful and just crumbled in a heap under my duvet and went to sleep. Only later when I searched in vain for my thermometer, did I realise that oh my goodness, could be ill. And did I have to phone The Tango Man? It is the vulnerability, my vulnerability that is so difficult to handle. To accept. That one minute I can be ok and the next feel dreadful.
And woke up last night, one of my many times in the middle of the night and realised how overwhelmed I was by the upheavals of the last few months: diagnosed with cancer, then my mom diagnosed with cancer and she dying five days later when her diagnosis had not been bad. I still cannot understand that even though I spoke to the surgeon who had diagnosed her.
And this chemo. People don't understand, and why should I expect them to cos I certainly did not know, did not even think about it; that the hair loss is the issue. Yes it is awful and yes, it can be embarrassing and yes, it can make you feel ill at ease but really, that is not what chemo is about and that is not the worst thing about chemo. It is the most obvious but really the least significant. It is things like suddenly feeling dreadful, suddenly feeling ill in a way that cannot be described and then lying down and both hands and arms hurt like hell where chemo has burnt the veins... ja, chemo is not about hair loss. That is just the obvious part.

reader from brazil

Wow! Someone from Brazil has been reading this blog. And have more readers in the US than the UK. And think most of my own friends, apart from a handful, don't read it. Interesting that. Wish my main topic was more cheerful.
Had a dip this afternoon. Left work early - at 4pm - and The Main Man saw me and I didn't even care cos was feeling yuch. The truth was that I had looked in the mirror earlier and I had looked like a ghost - so pale and wan. Then came home and ate and felt momentarily better than went to sleep, feeling shit. And can u believe it? My state-of-the-art thermometer is in another bag and not here with me. And all because I bought a beautiful new black leather bag - super large - and did not transfer all my goodies into it.
Also, this afternoon there was an announcement - well, at least that is when I saw it; this morning it was a different story - that special votes for the disabled, those who gonna be out the country etc - well, registration would be allowed until 5pm today (it had previously been said it had closed on March 27). Well silly ol' me, who is usually so organised, did not arrange a special vote and now I am hassled that I will not be able to vote in the general elections on Wednesday.
Oh the point I was making that my ID book is not in my new bag and cannot register for special vote - would have been allowed to vote straight away. And as I saw it only at a few minutes to 4pm, and registration closed at 5pm, there was no time to go collect it and make it for voting. Plus I did not feel well enough for the mad dash.
Cliche, cliche, yes, but really dislike being sick. But ok now I think. At least I woke up before my alarm went off - although had increased the sleeping time twice - and now gonna see if I get up outta bed and do the few things I had planned to do tonight.
Damn this chemo and the immune-compromised week it brings. On the other hand, welcome the chemo because at least there is something that can make me better.

no primary tumour

Funny that. Posted messages on quite a few international sites/forums and not finding anyone else who has breast cancer but no primary tumour. Might blitz the local support groups tomorrow. The Tango Man said 18% of people fall into that bracket but not sure if he meant breast cancer or all cancers.....
So if you reading this and have breast cancer but no primary tumour, please contact me so I can find out about your treatment. Thanks.

the start of....

It is Sunday morning and the start of my immune-compromised week. Cannot deny that I am rather terrified as to what might happen to me. It covers days 7 to 14 from the day of chemo treatment and last time I got throat thrush and could not eat solids for just over a day and then only soft foods for a few days. The time before my blood counts went low and I felt dreadful and had to leave work and then go for blood test at night at hospital and then go on antibiotics and....
Essentially am not allowed to public places in this time... except for work and can go grocery shopping - just quickly.

But must say - thoroughly enjoyed the time of my weekend I could go out!

wonderfully busy day

By the way, the play last night - At her Feet - was brilliant and Quanita Adams is definately best actress of the year.
Been super busy today and so far have enjoyed every minute of it.
Went to Hyde Park to buy a wedding present for Ntseke and Birgit. Could not decide between a Ritzenhof bottle opener and a Carrol Boyes www.carrolboyes.co.za pate knife - has to be small so can fit into my handbag and then don't need to pay tax when cross the border into Lesotho. Chose the pate knife as don't think bottle openers are used much these days, what with all the screw tops and twist tops.
Then went to the opening at the Gordart gallery www.gordartgallery.com/ along the strip in Rosebank. Was so packed could not get in for the opening performance so hopped along to all the other galleries in the strip. Favourite was Deborah Bell www.deborahbell.org/ at David Krut www.davidkrut.com/ and the Pieter Hugo pics www.pieterhugo.com/ - wow!!!!! - at Warren Siebritz www.warrensiebrits.co.za/, which must be the most serious gallery there. Serious as in authoritative.
Bought an artwork by a muso/artist called Stompie Selibe www.davidkrutpublishing.com/1317/stompies. Called Stay with Me. Quite serious and possibly angsty. My taste. When get it in three weeks' time when the Gordart exhibition closes, will post a pic of it.
Wow, just been checking Stompie out on the Internet and am very impressed. Think I got a good deal considering it cost less than my handbag and less than my friend Karen's haircut this morning. Ok, ok, still need to frame it but it's not toooooo big so should not cost tooo much. Well, it will double the cost of the purchase.
Then tonight off to Gramadoelas www.gramadoelas.co.za/ for dinner and to stand-up comic Loyiso Gola's show www.jhblive.com/live/publications_view.jsp?pub_id=97490 at the Market www.markettheatre.co.za/.
Only once did I feel shitty - when I stood still too long chatting to who had previously been a stranger at the Gordart Gallery.
Oh and forgot, went to Soulsa www.food24.com/Restaurant/0,,2165,00.html for lunch and spent the afternoon there, also drinking my first real alcoholic drink since starting chemo - a Pimms. Delicious.

feeling fine

Almost too scared to say it but feeling fine. Rushing off to the theatre to see At her Feet, a play by South African but New York-based playwright Nadia Davids . It's about muslim women and the actress is Quanita Adams en.wikipedia.org/wiki/Quanita_Adams who was stunning in the film Forgiveness.
Both Nadia and Quanita studied drama at the University of Cape Town which is the best drama school in the country. Read this piece brooklynrail.org/2007/11/express/madressa by Nadia earlier today which was published in a Brooklyn, New York publication and which impressed me no end. Have so much more to say but gonna have to leave that for later/tomorrow as need to get going to the theatre (Market Theatre).

laughed at dinner

How lekker to eat a slice of bread tonight - brie on rye - after keeping to that part of Pesach (Passover). Then on top of that went out for pizza and pasta and laughed and joked like old times. Really enjoyed myself and was able to forget that my hand hurts like hell from the chemo and that I am nauseous.
In between chatted to my sister and got emotional about things. But ultimately a good and touching night. Thank goodness.
Wearing my new little 'hoed' (Afrikaans for 'hat') except it's not really a hat but a little cotton cap. Thought it was unsightly when I bought it at the wig shop, and guess it still is, but gosh, it is warm and gonna be ideal for the winter - as my hair grows back, please God, if the chemo stops as the doctor thinks it might.
Which reminds me. That damn wig has never been worn but stands permanently on its yucky white base on a corner of the dining room table, yet one other artifact among the marula seed bowl from Limpopo www.marula.org.za/, the candles and handblown glass miniature owls from Swaziland and the Lalique kneeling man Aubrey and Andy bought me.
Been wondering: can I return it and get some money back and should I donate it to a charity? Or should I keep it for a while in case I do decide to wear it? Meanwhile, I am still waiting/fighting with the medical aid to pay me for the damn thing. Oh they pay for it, they agree, they just have not yet... since I first submitted the claim at the beginning of February.
Need to go now - time to chat about elections and how some parties are copying the Obama website - or trying to.......and about how much money the ANC has for it election campaign, said my friend, waving a bundle of multi-coloured election flyers which arrived in his postbox today.

really touched by this blog

cancerlost.blogspot.com/2006/11/about-meaghan.html is meaghan's story of her fight against cervical cancer. she has just passed her bar exam and this despite having to have surgery every three months...

three months since i was diagnosed

Today is three months since I was diagnosed with breast cancer. No primary tumour. Hormone receptive. Not sure it get any better. Not sure. No longer under such a high level of anxiety re my hair loss but not happy about it - it's gone with a thin layer of regrowth and rapidly thinning eyebrows - but it is definately less of a hassle than before. Less of an intense hassle.

But now getting hassled about herceptin. It is way down the line in my treatment, I think, but it seems one takes it for ages and ages - spoke to someone who took it for two and a half years but one year seems to be the norm, if there is such a thing as a norm with cancer treatment, and really, I want to be free of cancer and treatments.

www.cancer.org/aspx/blog/Comments.aspx?id=29

More importantly about today though, is that it is one month since my mother's funeral. Makes me very sad. She died very suddenly and I miss her terribly. We all do.

cold oncologists

I remember when I went to see my GP the day I was diagnosed - ja, seems crazy but the mammogram doctor told me to go see my GP and I refused, till I became so upset I knew I had to see someone professional. Well, the GP told me oncologists think they are closer to God than anyone. There is one who is human, he said, and sent me to Sally Baistow at Sandton Oncology. She is nice and was a good start, if an appropriate one, as she is a radiation oncologist and that comes later. One needs to start off with a medical oncologist which ended up being the fourth kind of doctor I saw.

Anyway, was chatting last night about how difficult my oncologist is to talk to. I am almost scared of him. Forgot to ask him a question yesterday - drew up my list after a particularly sleepless night and sent an email today.

Anyway, was saying my oncologist, The Tango Man, does not adopt a holistic approach. He just treats the patient. "No, not the patient, just the cancer!" shrieked my friend, and how true it is. That is why he will asnwer any questions about the cancer but was truly shocked that I asked for advice on what to do re voting in the elections during my immune-compromised week. And why he ignores any reference to nails and eyebrows. "If your nails split, they grow back. If your eyebrows fall off, they grow back. They're not an issue," explained my friend. "Just vanity. That is how he sees it. Now, the guy whose teeth are falling out. That can have serious implications and that is a different matter...."

Look, I like The Tango Man and am not sorry I chose him as my oncologist. I trust him. But don't think he is the best person to invite to your next dinner party.

gaining weight

Each time I go for chemo I get weighed.

* Between first and second treatments: lost 1 and 1/2 kg


* Between second and third treatments: gained 0.2kg despite having lost a lot of weight the week before the weigh-in (then my tummy problems disappeared and having got used to eating whatever I could, I carried on, just eating far more!);


* Between third and fourth treatments: gained 0.2kg short of 1 kilo (despite having had throat thrush and being unable to swallow solids for over a day and then only soft foods for a few more days - then guess made up for it!)

Mmm....

go zille go

Don't see this as electioneering - hell i am the biggest complainer of all the political stories in the paper which bore me to death - and I know some of my friends dislike Helen Zille - mayor of Cape Town and head of Democratic Alliance (DA) but I admit I am biased - adore her straight forward approach and was super impressed from the days when I dealt with her when she was spokesman for the University of Cape Town.

Anyway, this is what she has to say about why Jacob Zuma, our future president, should be prosecuted (corruption charges were dropped against him recently):


www.da.org.za/newsroom.htm?action=view-news-item&id=6555

some interesting things the tango man said today

The doctor, The Tango Man, has some interesting responses to my questions today:

(Oh shit, see i wrote nothing down but do remember)

* RED BUMPS:
The red bumps I got on my body since chemo, well, really only one and possibly three little ones on my leg, is a mole. He seemed unconcerned. Did not think it was a big deal either but will get my dermatologist to look at it in my annual check-up scheduled for later this year;

* THE SUN:
I do not need to hassle re going into the sun. Ja, for those who know me, this is a joke as I seldom venture outside, am covered in sunblock throughout all seasons and used to wear hats in the sun even when I had hair but people are driving me crazy saying I must not go into the sun cos of the chemo. Well, he said my treatment is not light-sensitive. I will get burnt if go into the sun but really I now know if go outside without a hat on for a short time it is not going to be a train smash;

* MUSCLE TONE:
Can still not believe that he said my lack of muscle tone is most unusual. I am not imagining it, I swear. He said unusual for my chemo and does not happen overnight. Now I know I went to gym regularly before but have also had times, eg when had inner ear infection last year and was super dizzy, where I was banned from gym for about a month and it did not affect my muscle tone, only my fitness, which was soon recovered. This is different. Within weeks of starting chemo noticed that my thighs were like jelly. Next wwas my upper arms. No muscles there anymore and even my neck a little. Now not for one minute pretending I was an athlete but... mmmm... unusual but it is there. Or not there really.

* EYEBROWS AND NAILS:
For the record, he did not comment on my disappearing eyebrows or my seemingly-about-to-split-in-half fingernails. Maybe when you have patients like the hunky looking man I overheard at the desk saying it was ok if his treatment was scheduled only for tomorrow and there had been an error with the dates, but could he get a prescription for a pain killer as the one he was using was not working and his teeth were falling out? And also, if I stop chemo soon ie if today's was the last, then those problems are likely to vanish although Joyce the nurse said my sore hands and veins could take months to go away......

* VOTING IN THE ELECTIONS:
It is South Africa's election day next week, smack bang in my immune-compromised time when I am not allowed to be near lots of people. He seemed shocked when I asked him what I could so. Shocked and surprised. I said I was asking him cos I ... ag, cannot remember what I said but persevered and he said I could try to go early or late when there are less people (lol, that's what everybody tried to do!)or else not vote but I want to vote. Think am going to ask a contact to help me and to arrange that when I arrive I go straight to the front so my time surrounded by masses of people is minimised.

* HOW LONG I HAVE HAD MY CANCER:
A friend (or was it friends) said I was crazy to want to ask this question as what difference did it make but I asked and was intrigued by the answer. Wanted to know: seeing I had had a mammogram and ultrasound scan and given the all-clear less than two months before I found a lump below my armpit, had I had cancer then already? He said I had had it for about six to nine months to about a year already. That it did not happen overnight. Which raises the question: was there negligence during those tests? One doctor I saw questioned the wording on the report as to whether or not the ultra-sound scan had been done below the armpit. Must admit that that time I had not been observant, hell, it was just a routine test. But would The Tango Man be sending me back to the same doctor for the test if he was not happy (although a doctor different to the main one had done the test that time and this time I have INSISTED I get the main oke). And does it matter? Still had cancer and would those two months have made a difference to the diagnosis and treatment?

Anyway, now waiting to do those tests again in three weeks's time, as I wrote about in my previous posting. Then maybe today's chemo was my last. Can only wait and see.

kinda good news

Had my fourth chemo session today and the good news is that it might be my last. Have to have tests in three weeks time - lots of blood teasts on Tuesday May 5 plus an ultrasound scan of the left breast and the axillary lymph and then seeing The Tango Man and The Composer (the surgeon) two days later. Ja, that could be bad news as might need an operation but think it is not worth getting anxious about it now (lol, think i might be hysteeeeeerical by then) as really it is the tests and their professional experience which will tell.

Easter Sunday and went to a nursery outside Brits called Simply Indigenous.
www.simplyindigenous.co.za/

Love it there and was most amused to see a new, large printed sign which greets one on arrival. Not a child-friendly nursery, it states, and please discipline your children. Asked owner Johann what had happened. Well, eight children had piled out of a car (he is not certain if they all belonged to one family) and went wild - running into the flower beds and breaking off bits of plants. Wish I had been there to see those hooligans!! Must have been chaos for him to have a special sign printed to prevent another such occurrence.

Health-wise, however, not a great idea. Decided not to drive to Brits (and the nursery) myself as was worried about my energy levels and sure enough, became tired shortly after leaving Joburg and dosed a bit in the car. Then spent most of the time at the nursery seated on a bench and felt too sleepy on the way back to pop into another nursery. Was not into popping in anywhere. And have decided to forego movies tonight to do something less demanding.

When lack energy feel a bit miserable but ok now. Got a braai tomorrow night and really want to go but not going to shop around for a present (not a birthday party but was the host's 50th recently so want to give a present) and going to resort to something easy and accessible instead. And no shopping for bags tomorrow (looking for a large everyday use handbag which is strong and so can handle all my stuff I love carting around). But who can talk for tomorrow? Will wait and see.

Then chemo on Tuesday.

my disappearing eyebrows

Posted this on March 26:

oh woe is me!!
Oh eyebrows, wherefore art thou going? Thou art forsaking me, and I feel forlorn. Oh whither art thou going and fading and dwindling? And how dare you? Stay, I beseech you, stop wandering yonder. Rekindle your passion for my visage and henceforth travel no more.

Now, about three weeks later, my eyebrows are definately shorter, both between the brows and at the outside ends, and also markedly thinner and so fainter. Funnily enough, not aware of the hairs falling out. As in they don't seem to fall out onto my face or about me. But must state: still have eyebrows.

Have bought three things to supposedly help this state of affairs:

1) Talika eyebrow lipicols - called eyeborw conditioning gel (R400 from Metropolitain) which I would say is a complete waste of money. It is supposed to help the regrowth of eyebrows and they say it needs 28 days to work but by then probably won't have much eyebrow left and how the hell can some vegetable thingie counteract chemo?
Humph!! Tried to return it for a credit note or something but the shop was so full of shit. First said I must phone management and then when I complained, said they would phone but they did not come back to me so just starting using it twice a day. Fakking exorbitant though.

2) Talika eyebrow extender - this is an eyebrow pencil which adds hairs but is not waterproof. Leon the make-up artist told me about it but it might work for photo shoots but don't think it works very well for real life. Perhaps I should have bought a black one rather than dark brown, which is more medium coloured and therefore too light for me. Not impressed. Maybe I will feel differently if have no eyebrows at all but hopefully it won't get to that (my scalp has lots of regrowth all over, albeit it light and fluffy and The Tango Man did say it was extremely unlikely they would fall out although why I am clinging to his words rather than the reality before me, I do not know!)

3) Also bought a Clarins eyebrow pencil. Best buy of all and use it a lot.

TALIKA PRODUCTS: www.talika.com/product-eyebrow-lipocils-en.html
www.talika.com/product-eyebrow-extender-dark-brown-en.html

AND THE SHOP WHERE I BOUGHT THE TALIKA PRODUCTS:www.metropolitaincosmetics.co.za/site/shopcustadmin.asp

Saturday shopping

Finally made it to the new melrose arch shopping centre....liked the new Woollies where I bought four soup bowls - with handles on either side - but fakked up by buying each in a different colour rather than just the brown and mustard ones (ie two of each colour or even four of one colour). But when looked at them was too lazy to contemplate returning them so am just keeping them. And do like the actual bowls.

Then ummed and aahed about buying a bag at Young Designers Emporium. Then decided against going to this shop at Hyde Park my sister told me has fab bags. Worried about my energy levels having had some bad experiences on Saturdays when I have over-shopped but my sister pooh-poohed the idea that my energy levels are bad, saying I am up and about and functioning, which is more than she can say for some of her friends who are also on chemo.

Just got invited to a braai on Monday late afternoon. Was about to turn it down cos have chemo early on Tuesday but then decided what the fak: so what if I don't have Chinese chicken and corn soup ready for when I do the chemo-recuperation. Sure I can manage without it. Else could buy it in advance I suppose. Ja, will do that (had planned to buy it late on Monday). Ja, I really am inflexible.

My sister is going to Cape Town next weekend to spend some time with my dad. Makes me tearful cos I would love to go. But not allowed to fly cos of the chemo. Must speak to The Tango Man about that. And about the wedding in Maseru.

Still eating too much but possibly less manically than before. Had leftover tsimmis (see below) at my sister today and once again, too much fruit, one of my big downfalls. Hope to go out for dinner again tonight.

TSIMMIS, A TRADITIONAL JEWISH FOOD EATEN AT PASSOVER - AND OTHER TIMES
: tzimmes (the word tzimmes - also spelled: tsimmes, tzimmis, or tsimmis - informally-speaking, means to make "a fuss about something", however in Jewish culinary terms it is a sweet mixture of specific foods and most often means a mixture of stewed carrots, prunes, raisons, and honey. It can also be a casserole of various fruits, vegetables and/or meats. The word "tzimmes" is from the Yiddish word "tsimes" which in turn is from the Old High German compound words "ze", "zuo", meaning "to", "for" + the Middle High German word "imbiz", meaning "light meal". In turn, the word "imbiz" is taken from the Old High German word "enbizzan", meaning "to eat", where "en" or "in" + "bīzan" or "bizzan" means "to bite"). The word "tzimmes" is also a Yiddishized play on the German words "zum" ("to", "to the", "to that", or "for") and "essen" ("eat") ("zum essen" as a phrase means "for dinner").

www.angelfire.com/pa2/passover/ashkenazicpassovercustoms.html

www.epicurious.com/recipes/member/views/TSIMMIS-1212366

some interesting sites i have been reading

Been trawling the internet, reading sites which sprung up from a newsletter I get.
The newsletter is: mail.google.com/mail/?zx=1pvx0hnktcnfr&shva=1#inbox/12085c0c15268ef6


Or email Pam Stephan at breastcancer.guide@about.com


This site is about nail disorders resulting from chemo:

breastcancer.about.com/od/lifeduringtreatment/tp/fingernail_disorders.htm

This site is about red devil, one of the chemo drugs in my treatment


breastcancer.about.com/od/chemotherapydrugs/p/adriamycin.htm

a bit manic

A friend cooked lunch today. "Is this enough food?" he asked before he started, explaining that he wasn't sure how much I was eating these days. You see, it changes day to day since I started chemo.
Now I have become manic - eating and eating and eating and also shopping and shopping and shopping. Is it my fault that winter has not arrived yet and all my new winter clothes are sitting in packets with their labels on waiting for colder temperatures?
But have to control my eating now. Have picked up a fortune just in the last 10 days. Know that with next week's chemo am likely to eat less but really, this weight gain is uncomfortable and yucky.
Going to go out for supper shortly. Wish there was a vegetarian restaurant in Joburg. Oh there is one in Emmerantia which I went to last year and really disliked - every single thing on the buffet tasted the same: bland. Even the so-called veg curry. But even that yucky place is not open at night. Really feel like butternut and sweet potato for supper - and where am I going to get that? Oh maybe should go to The Red Chamber in Hyde Park - delicious Chinese food such as fish soup of steamed kingklip and julienned strips of ginger in a clear liquid... mmmmmmm. And wonderful tofu with some kind of interesting mushrooms (forgotten which). Mmmmm.....

the unpredicatablity of it all

Was saying to a friend: "Let's go away some time, even just a night". And he responded: "I am not going away with you unless you have your doctor's ok". "But I am fine,"I responded. "Ja, he said, "but you can leave the room now, come back and say, "my mouth is playing up again".
And it's true. Although for example this week have been feeling amazing, the minute I pushed myself, working at a faster pace and then going to a dinner where I am expected to chat and be alert until late, I just crash.
But what the hell. Gonna go out just now. And gonna be fine.

trying not to think about it

Have my fourth chemo treatment coming up on Thursday. Trying not to think about it but the thought is always there, lurking at the back of my mind.
Earlier thought my computer was broken and was about to go out tomorrow (most shops in Jozi closed today cos of Good Friday)to buy a new one when a friend was able to sort out the problem. "I can't do chemo without a computer!" I shrieked. What I meant is that I need my laptop as a diversion when I deal with the chemo after-effects.

tip for splitting nails

Forgot to mention the other day that my beauticians gave me a good tip for how to help nails which threaten to split down the middle, thanks to the chemo. (By the way, looking for more info on the effect of chemo on one's nails, if anyone can point me in the right direction?)
Well, anyway, they said use nail polish. Even colourless. Need the polish to protect the nail from splitting.

Not collapsed or anything....

... just been super busy and no time to write. Attended an all-day workshop for work on Tuesday (wrote about that), then had to compress Tuesday to Friday's work into Wednesday and Thursday so could take today, Good Friday, off. Then, on top of that, had Pesach or Passover, the Jewish holiday, and had two seders at my sister, leaving each at about 11pm. Tired me out. Yeah, yeah, I know: exasperated by the effects of chemo no doubt.
Without trying to sound like a super optimistic bunny, really believe now (had to be convinced) that have so far not reacted too badly to the chemo generally and it has not affected my life too much beyond my not being able to go out as much as normal - ja, blah blah blah, written about this a lot lately - but there is no doubt don't have as much energy as normal.And so fakking what. But did find the idea of going out last night rather an ordeal but then was up bright and early today so guess it's not so bad. And no longer one bit tired.
But then have had a super super quiet day. Still in pajamas and it's after 5pm but likely to get up and going just now.

Read about Barack Obama's seder at the White House;

re lekgotla

It has just been pointed out to me that it is not that the word bosberaad - see previous posting - is politically incorrect but rather that lekgotla is seen as an assertion of a new black paradigm where one relates to terms which are derived from black culture. So if a workplace is so-called black, but top management is mainly white and the culture is white despite the company having a so-called black name, they would never call their management brainstorming session as a lekgotla. It would be a bosberaad. The company I work for gets angry if people refer to our bosberaad. It's a lekgotla and nothing else.

almost an ordinary day

Almost had an ordinary day. Woke up far earlier than usual cos had to be at workshop downtown, did 20 minutes exercises (hell, it almost felt like going to gym and then getting on with the day), then went to the workshop which was both in a stimulating environment as well as stimulating itself (see previous posting), then finished an hour earlier than would have finished work, so rushed around town like a lunatic - well, no different than before, dashing off to the listeners' library, anxiously listening to the last few minutes outside the shop with only minutes to go to their closing time; collecting someone's birthday present, dropping it off at them; quickly doing some grocery shopping and taking it home; making two calls; then stopping off to collect chinese chicken corn soup (my new favourite food by far) and then dashing off to a friend.
It was almost a day freed from cancer neurosis or awareness. Was animated at workshop, especially in the beginning and forgot I should be anxious re wearing a hat especially among my work colleagues, most of whom I don't work with directly and so don't know. Then thought about what The Yoga Man had said ages ago: if you work around feeling hairless and hassled, then people will look; if you work around hairless and happy, people won't notice. And it was only at lunchtime that someone came up to me, touched by arm and asked how I am. Oh (earlier someone else had done the same but that was someone I see everyday so he knew.)Oh not saying people did not notice but I was clearly ok so it was a non-issue.
Then breezed around after the workshop as if nothing was different.
It is only now that the fact that I have cancer has hit me. Well, become an issue. Cos I feel drained, exhausted, wrecked and it is only 9.30pm. Energy not quite at its peak but hell felt wo

stimulated then deflated

Had such a fascinating day. Spent it at the Turbine Hall in Newtown which used to be this derelict building characterised by broken windows and squatters and even think some people died there during a fire.
Anyway, the building has been revamped and is now the headquarters of Anglo Gold Ashanti, a huge mining conglomoration, as well as other smaller companies such as Freedthinkers, where I attended a workshop based on research they have done for the company I work for on women aged 35 to 50.
Thinking I might face a day of boring presentations, I was fascinated by the process they used which involved us moving to three different spaces in their offices during the day - one with the walls entirely covered in whiteboard with coloured khoki pens to write ideas on - as well as fresh salads, one chicken and the other couscous and roast veggies for lunch.
I left feeling inspired by the process which saw us create a slogan/promise as well as three visual images which together encapsulate the product we might produce.
So imagine how deflated I felt when a friend said that that is the type of process used by companies in their bosberaads or lekgotlas/lekhotlas or senior management brainstorming meetings (bosberaad being the Afrikaans word for it and now regarded as not being a politically correct term, and lekgotla being the Tswana term for it and the other spelling, lekhotla, the Sotho word for it).
Well I have been to quite a few lekgotlas for work and not once did we use anything as inspiring and jacked as that. It was all rather ad-hoc and at the most there was an outside speaker who came to give their opinion on some aspect of the company.
I feel so last century.

TURBINE HALL:
multimedia.thetimes.co.za/photos/2008/08/newtowns-turbine-hall/

FREEDTHINKERS:
www.freedthinkers.com


LEKGOTLA OR LEKHOTLA:
au.encarta.msn.com/dictionary_1481582543/lekgotla.html

Reminiscent of the type of exercises I do

/www.ehow.com/video_4400792_chair-yoga-seniors-hip-openers.html

This video does not represent the type of exercises I do but it is similar to the low energy ones which my biokineticist Dalena designed for me now that I cannot go to gym as my cancer treatment can affect my heart. Yes I know this video is for seniors but that is kinda the level I am on now and really think anyone can benefit from what is shown here.

Not everything is the cancer. Some things just are.

Well happy to report that muscular pain has gone so clearly the yoga exercise worked.

Plus did a back bend supported on a chair - apparently great to boost the immune system - plus did another one where bend knees and join soles of feet, which are supported on cushions and u lie back on yoga foams, or cushions or whatever for that matter. It pulls like hell on the inner thighs but seems to help the gluteus maximus too.

Did 50 minutes of my exercises this morning but admittedly 20 minutes of that was in the easy feet up against the wall, another immune booster and cure-all.


Having woken up rather shaky, feeling like I didn't want to go anywhere or do anything ever, and feeling that all this enforced stay at home time due to a compromised immune system had turned me into an introvert, after the exercises i bounced up and wondered if i could even make the yoga class tomorrow.

Don't know really. Tonight was pretty tired and chose to stay home this evening rather than pop in to see a friend. But also wanted to try on all the pajamas I had bought today and wrap a present and....

Went to work super late today so that could go shopping and do all those things i could not do during my immune compromised week last week. Only went to four shops, and all in Rosebank, but then also went for manicure and pedicure later, so maybe that tired me out a little. And then also popped into a clothing shop before the beautician and also stopped off at Fournos for rolls and tzatziki on my way home. And not wacked. Just happy to chill.

Oh it is amazing - and silly - how desperate I am to listen to anyone who can bring me good tidings re my symptoms. The two beauticians attending me today assured me that if my nails split it wouldn't be so bad, that nail polish would protect them, and my toenails were fine but my skin just a bit dry. And I believed them. Like I believed that stupid assistant in hyde park who said that eyebrow stuff would stop my eyebrows from falling out/thinning. Bullshit. But the beauticians I do like.

Plan to read tonight. Lol. Seldom too and it is hard to say why. It started even before the diagnosis so cannot even say it's cos of the cancer and my emotional state. It just is.


This is similar to the one pose I did, except I did it supported on cushions and foams and I lay back:
www.yogajournal.com/poses/486


This is another exercise which really helped. Here it is not classified as yoga but it is essentially the same movement:
www.spine-health.com/fig-20-buttocks-stretch-piriformis

amazing! this pain is not cancer related!

Pic from yogajournal


What a relief. Have a new pain but it has nothing to do with my cancer. ("My cancer". Yuch. First time I have personalised it. Think I will stick to "The cancer". Don't wanna get too close.)
Anyway, the muscle in my bum and at the outer side of my thigh is sore, probably related to the exercises I have been doing. At least three of these exercises aim to work against pain there, which I first had about a year ago relating to my knee cap going out of alignment. Apparently it is the gluteus maxima muscle.
Now it is sore and uncomfortable and this morning's exercises did not help - plan to do some more just now - but what a relief that it's unrelated to the cancer! Makes me smile. What a change.

This is a yoga pose which helps make the pain go away. The pose is called eke raja pada kapotasana:
www.yogajournal.com/poses/863

renaming the yellow gunge

I have just been critised for calling the yellow emulsion - supposedly with a cherry and mint flavour - the yellow gunge.
I have been told that I denounce everything which actually helps me, in this case the thick liquid which i have to keep in my mouth for a few minutes before swallowing and which helps my oral thrush caused by chemo.
So okay, despite the fact that I willingly use it many many times every day, I will no longer refer to as the yellow gunge. And despite the fact that I threw up the first time I tried it, and that I cannot talk when I have it in my mouth - as I do at this very moment - I will find another name for this lovely liquid which makes my mouth and throat better. And so I will embrace it, I believe the terminology is.

ended up an eventful saturday

After a really lazy day, banished from the birthday party cos of my compromised immune system, the action hotted up. The Yoga Man arrived back from the party with two friends in tow. As everyone had walked to the nearby party, I offered to drive the two back to their house. There The Yoga Man went to inspect the pool and, walking down these large steps into the garden below the house, decided to take a jump.
Well, he fell against something - too dark to see - and we ended up at Milpark Hospital where he had an anti-tetanus injection and stitches. And no, no idea how many as he did not ask, not having had stitches before and not realising that that is an essential bit of info one needs for post-incident discussion.
And of course, being prone to catching illnesses, I had to sit in the car rather than be a supportive friend and so listened to John Le Carre's Mission Song in my car.
So all in all, not such a quiet, reflective day after all.
Time for the yellow gunge in my mouth.

my mom

Today is three weeks since my mom died, very unexpectedly. I miss her terribly and cannot believe I cannot just pick up the phone and chat to her.

this is an unusual saturday morning

Cannot remember what I did on my other **immune compromised Saturday mornings, but this one feels strange. Ok, got up early to do feet up against the wall, the yoga cure-all which I have now been convinced will boost my immune system, and then did 20 minutes of my low-energy exercises. So a 40 minute start like that to the day was great and had the same effect gym used to have: being alone and just focusing on what I am doing. (Oh banned from gym for now cos the treatment I am having plus what I will be having can affect the heart; hence the biokineticist-designed low energy exercises.)
Now should be reading but am sitting on the couch writing this and then gonna play word games on facebook - lexulous, wordscraper and scrabble. Am appalling at all of them but enjoy it so much.
Had the yellow gunge in my mouth for the oral thrush so waiting a bit for it to enter all the crevices before I drink something (am damn thirsty) but really my mouth feels so much better this morning. Maybe it was the burny biryani last night that cured it all.
Now I just need to work on my sleeping patterns. Went to bed at about 11 and was up at .. oh gosh, now cannot remember but think it was 2-ish, 3-ish, 4 and then after 5.
But somehow it was not so hectic. Lots of dreams but did not wake up feeling wrecked. Getting used to this snatched sleep.

**cos of chemo, not allowed out to public places, except work, on days 7-14 after treatment

a quiet night

It is very still here. Literally. Barely a sound. So sitting here reflecting. Just eaten delicious veg biryani, dahl and raiti and a french salad which this restaurant - a dive in Randburg called Raj Rani - msnages to make spicy.
Always look forward to this on the Friday night of my immune-compromised week as, apart from work, not allowed to public places as too susceptible to illness.
This time, however, was pretty anxious as to whether or not I'd be able to eat it, thanks to my oral thrush caused by the chemo. Survived and loved it as usual even though my friend asked for two potato curries (they're tiny) which they neglected to include, adding instead two potatoes to the biryani, and I added copious amounts of Bulgarian yoghurt to soothe the burn. But enjoyed it immensely nevertheless.
My sister seemed astonished that I almost - is it 'almost'? - resented not being able to go out this weekend. The truth is that I feel ok - ok, ok, minus some minor hassles like my not-100% mouth and menacing, precarious-looking nails - and so would love to go out to a restaurant, somewhere with a buzz. Not into partying but could easily sit in a restaurant and eat and chat. "May that be your biggest problem," she said and I agreed.
Look, I am grateful that I generally feel ok but it does make it difficult to stay in when you feel ok to go out. And I have always been a going out person so the thought of two days in the confines of a home - ok, not always my own (at a friend now) - is somehow restricting rather than pleasurable. But I am prepared to indulge in the thought of a quiet weekend.
The truth, however, is that I would much rather also go to the Art Fair, meet someone for lunch tomorrow, buy the two birthday presents I need to buy, maybe buy some clothing (although don't really have the money for that) and see a movie on Sunday night. The time between those activities would be quiet enough time for me.
I am, however, grateful that I feel well enough to feel resentful of my enforced removal from Joburg's buzz. And in the interim will regularly swish masses of this yellow oral thrush gunge around my mouth before swallowing it.

the self-obsessiveness of having cancer

I sometimes, no, often feel I am living in a cocoon. Not a protective one so maybe it's not a cocoon but definately an enclosed space separate from the world. There I obsess about everything to do with the damn treatment, cos let's face it, it's not the cancer itself that is freaking me out, it's the side effects of the treatments.
Anyway, in this little space, me and my latest bugbear and all its paraphernalia is all that matters.
So, right now, it's the yellow gunge which is presently in my mouth which is tightly shut (you have to keep it in for a couple of minutes), and the bottles of it - one on my desk at work and one beside me here. The aim is to overdose, well, to use it as often as I can, on both my dad's advice - he is a doctor - and the nurse at the oncology centre.
Then there is the question of my nails. Tonight am going to pack a few plasters into my bag in case my nails split in half. Two look ominously as if they might; the ridges in the middle of them are raised and solid, stronger than the nails itself.
And then in the background is the haze of the rest of the world. Me? I focus on my little world. What I am currently eating or not eating (tonight tried pizza but it was a bit spicy for my mouth although on Saturday night, pre-oral thrush, the same one was delicious.)
Sitting here listening to this Senegalese guy Ibo talk about physics and maths. Yet what is he doing in SA? Making drums and earning a pittance.
Oh, there the outside world intervened in my little one.

soooooo relieved

So so happy to report that can eat solids again. Liquids weren't really doing it for me as I became increasing hungry and so increasing irritable.
But my mouth is far from ideal. Have an ulcer appearing on my outer, damn it, outer top lip, plus one inside (and that's just what i could see from my car mirror), neither of which are sore. Would not chance anything hard but am so relieved that can eat and a cut-up peach, a slice of cold meat and some danish feta has gone down really well, on top of the Chinese chicken and corn soup and mango and raspberry frozen yoghurt which I bought. In fact, have enough of that chicken soup to feed the nation but will be eating it for the next day or so.
Ah these side effects of chemo are not ideal. Oral thrush is this one's name. Still gonna have to use lots of that yellowg gunge to remove it once and for all. But it's a relief to have that eina gone from my throat. Think it calls for another piece of Danish feta and possibly some Emmenthal to celebrate.
Now I need to work on my sleeping patterns, but that's another story.

a tip

A tip on how to wear a hat when your hair has fallen out. Buy an alice band (well that's what we called them, perhaps a head band, an elasticated fabric one) and wear it at the edge of your head closest to your head. Then the hat fits properly because without hair, the hat will seem too big, not filled-in enough; essentially the alice band provides bulk. Alternatively, wear a tight little cotton hat/covering/type of turban underneath it for a better fit.
Still finding hats a bit of a nuisance - they give new meaning to getting dressed in the mornings - and whip them off the minute i get home, to be replaced by a scarf, preferably silk.