some problems

Was eating my pasta lunch - a touch of garlic and one tomato sauce and a little mayo, so effectively plain - when suddenly I realised it hurt when I swallowed the food.
Stopped eating and phoned the oncology centre: it's either ulcers or thrush. Luckily not sore if I swallow generally, only if I swallow food. Was told to take my temperature and if it's high, to contact them or my GP for antibiotics.
My temp is fine. (Carry my thermometer in my bag).
Now using that yellow gunge all the time - but this time swallowing it.
Tried some pasta again but it did not work. That is, it hurt even more.
Going to buy some chicken soup for supper. Hope that goes down ok.

Oh and re my nails. Asked the oncology sister if my nail looks like it could split in half, could it happen? Oh yes, she said. And worse still, there is nothing I can do to prevent it.

Ironically, feeling ok. Not nauseous or dizzy or anything. Just gotta get this yellow gunge to work, the throat pain to disappear and my nails to behave.

A tally after third chemo treatment for breast cancer

Today is exactly one week after my third chemo treatment for breast cancer. I still don't know how many more chemo treatments I still have to go through but as far as I know it is either one or three more. Neither do I know which treatment follows this chemo or whether or not I need an operation, or the nature of the op should it be needed, and quite frankly my doctor The Tango Man has not determined it yet. Think it has a lot to do with the fact that I don't have a primary tumour, in fact, no tumour can be seen in the breasts itself even with MRI testing, but the cancer has spread to two lymph nodes below my left armpit.
Thought it might be useful to do a tally of where I stand right now:
* Not feeling great today but not shit either.
* Have not had to take any anti-nausea medication today
* Have not taken diarrhea medication for about 10 days but went to the toilet three times today so not ideal
* No longer have cramps but carry the medication around just in case
* Have lost almost all my hair but there is fluffy regrowth on top which I have told 'peers' through a silk scarf (which I wear only when with close friends indoors, the rest of the time it is hats)
* Have lost most of my body hair but not all; shaved under my arms about a month ago and have not needed to again, the same with my legs, and the latest is my dwindling eyebrows for which my latest acquisition is a R210 Clarins eyebrow pencil which I think I prefer to the R400 pencil I bought which adds hair
* Have sore hands and arms below the elbow - apparently the veins are burnt by the chemo - and rub retrogel on twice a day and scream dramatically if anyone touches my hands or lower arms
* Have a mouth ulcer which keeps moving its spot and am overdosing on the pretty yucky yellow emulsion which treats it
* Am tired if overexert myself, eg, visit five shops in a row in different areas on a Saturday morning - then need to sleep for hours
* Did not eat properly for about five weeks and lost weight, now have not stopped eating for two weeks and have gained weight - overall, no longer have any idea what I like eating or do actually eat
* Have some muscles else would not be able to sit and/or walk but essentially have no mucle tone - my thighs are jelly, my upper arms a mess, my neck is losing its elasticity, even my back is softer as there is no/little underlying muscle and generally I am on a quick pathway to instant ageing.

Next time someone asks how I am, feel tempted to say: "Considering I am on a programme of systematic poisoning, not doing too badly and bearing up, thank you!"

* My nails have developed ridges and my cuticles are a mess
*

the hassle of wearing hats

Wearing hats has become such a nuisance. It makes getting dressed such an issue as have to work out my outfit around my headgear. Just had a quick thought: what am i gonna wear to work tomorrow and, oh, dear, which hat? But think I know what am going to wear. When my mom died two weeks ago, we found she had a cute little blue material hat. It was for the rain, said my sister. So going to wear that with my blue skirt.Took quite a few of my mom's clothes. My aunt popped in during one of our sessions of going through her possessions - my dad had requested we do it as soon as possible - and said if we did not take things, we would be sorry. Ironically my mom had taken one of my tshirts which she loved, a bright multi-coloured one, on my last visit to Cape Town. Now it's back with me again. Also took some jerseys and some t-shirts, some of the latter the same organic cotton ones from Woolworths which I have.
Makes me feel sick to speak of my "late mom". Makes it a reality which until I speak like this I can pretend is not real.

lack of muscle tone

My lack of muscle tone is continuing at a rapid rate.
I first noticed my thighs were turning to jelly thought it was the cortisone I get as part of the chemo package. But my friend Lesley - who had breast cancer 10 years ago - has explained that it is the chemo itself which destroys cells but does not allow for regrowth. So I am effectively ageing at a rapid rate. Cannot remember if have written about this before.
Now my thighs are wobbly deluxe, my upper arms a disgrace and even my neck is starting to go. Look, in the scheme of things it is not the biggest issue but on the days or just in the times I am feeling ok - like now - it becomes an unfortunate issue. Nobody likes to accelerate their ageing.
But just touched my skin now and it felt so soft cos there is hardly any underlying muscle and so got reminded. Remember that I tried to look this up not so long ago but only found a reference to it on blogs. Must diarise it to ask The Tango Man. But don't need anyone to tell me that it is or isn't happening. It is. I am ageing at an alarming rate and have little muscle tone left. Guess it is gonna make me weaker and weaker so better get cracking on those simple biokinetic and yoga exercises.

a deliciously lazy sunday

Despite going to bed at about 2am - stayed for ages at Lapa Flo restaurant chatting to the owner Percy and just generally having a good time and then didn't feel sleepy - I woke up early ready to do my exercises like I did yesterday. Somehow never got around to them but did take a walk to the shop later and although did come back sweaty, it served its purpose - and got the yoghurt I wanted to make fresh tuna pasta tonight.
Still eating like a pig and have definately gained weight but will deal with it shortly.
Feeling very nutured. Gets lots of SMS-es and some calls (not too many as that would be disruptive) and feeling very loved yet also keep thinking about my one sister's friend who said she went into depression at the end of her treatment (maybe that is putting it a bit dramatically, but she felt super-vulnerable) because suddenly she was just like everyone else and nobody called her and cared for her incessantly.
Feeling wonderfully energised too. I know I did practically bugger-all today but honestly, found myself wriggling my hips and clicking my fingers in a spontaneous dance earlier.
Meanwhile, using this yucky yellow emulsion in my mouth as often as I remember to keep those dreaded mouth ulcers at bay. They are there, lurking, but still at bay (as if I am pushing a door with great difficulty to keep them out but still managed to eat a whole pineapple (yes, said I was eating a lot) without it hurting my mouth.
And have not used my eyebrow treatment yet but think will start tomorrow.
Gotta start the diet tomorrow too.

overdoing it

Had a crazy day in many ways. Woke up early and did 20 minutes of exercise. Well, maybe 'exercise' is a bit strong to explain what I did but as my one sister said, "It's all relative" and I was so chuffed at what felt like a major achievement. First time in about five weeks that I did anything vaguely linked to exercise and even if did not do the full tally as required by my brilliant biokineticist Dalena, did what I could and felt fabulous. Now must make an effort to get a Pilates ball but as the rest of the day determined, all shopping has to be rationed energy-wise.
Started off collecting a skirt from the repairman. Had torn the hem in CT. It wasn't ready even though he had agreed to fix it by today. In retrospect I should have taken it back as I threatened to but let's see: it better be ready by Monday morning.
Then popped into the shop near the repairman with the intention of looking at a funky bag i saw in the window (am hunting for a new bag which doesn't cost the R2600-something of the one I like). Ended up buying a damn Ed Hardy top. Say "damn" cos it is so expensive and now still in two minds whether I should have got the black or the bright pink. It's a short velvet tracksuity top and really funky which is why I wanted it but think should have gone the whole hog and bought the icecream pink rather than the more sedate black. Dunno.
Then went to Hyde Park to get the magic eyebrow pencil make-up artist Leon had told me about. Got seduced into buying this magic encourage eyebrow growth treatment too, when really my eyebrows are only thinning slightly and the intention of the pencil is only precautionary: if it does start thinning dramatically, I will have the remedy at hand without the trauma of having to go to Hyde Park Shopping during my upcoming immune-compromised week.
Needless to say, that was not cheap - R800 for the two - and now contemplating whether or not I should return the treatment. Well, have a week to decide as from tomorrow, it's the compromised time. So no shopping centres.
Then went to my sister but she was out, then to the pharmacy where I spent an absolute fortune on necessities - how unfortunate - and then went to Melrose Arch, but turned around as time as running out. Forgot that I had also popped into the fish shop to buy tinned sprats - anyone know where one can buy them in Joburg as they said they don't think they can source them any more? - and then spotted fresh tuna, which I just had to have, but didn't have a cooler bag on me and it was becoming increasing hot and so paid for the fish which the shop agreed to keep for me till they closed at 3pm.
Did not feel like rushing through Melrose Arch in an hour so just turned around, collected the fish, popped into Fournos next door for the second time that day (had bought hot cross buns and delicious I-think-it's-carawayrye bread earlier) to buy lunchy stuff and then came back and collapsed.
Well, not literally but must have slept for about gour hours. And that's quite tragic. Was depleted from that shop. Oh forgot, also went to the water shop where bought three cases of water.
But now in an awkward situation cos did not manage to get a birthday present for someone I intended to from WW and should not really go to a place like that next week. Maybe I can do it super super quickly. Oh dear.

Ja, things aren't what they used to be. Not in terms of my energy levels since started chemo.

Oh quite enjoyed the dinner I went to last night, to welcome Mumbai-based Iyengar yoga expert Jawahar to South Africa and think that's what inspired the exercise session this morning.

Was so chuffed when someone asked why I was not doing yoga and I said, "I have cancer" and she was shocked, doing a double take and saying she thought my hat (my Leon-inspired animal print trilby from Young Designers Emporium) was a fashion statement. She remarked how energised I seemed and I was chuffed and I think my reaction is pathetic. So desperate to appear ok when it is quite clear from today that I am far from ok and can barely do all the shopping and activities I plan to do.

But must stress: am not depressed. Am ok. And on my way out for supper now. Been eating far too much but will sort that out another time, like tomorrow or maybe Monday.

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.

so why you all so schtum?

I was commenting on my visitor stats when a friend remarked: How come nobody comments?
So come on everyone, how come I have had a total of two, or is it three, comments posted on this blog?

ordinary yet extraordinary

Had a most revitalising evening. On the face of it, it was pretty mundane. Left the office and drove the short distance - it's essentially a brief walk - to the mall. Then went to Stuttafords to collect the dress I had bought weeks ago and had altered and threw a tantrum because they could not find it and insisted it be delivered to the office tomorrow. (The truth is I have two more days before I hit my immune-compromised time and with depleted energy levels, cannot wake up early on Saturday and buzz around town. I can do about two things and that's it. Either way though, their service is appalling and I told them so, explaining that I was not surprised to find it so chaotic as when I had phoned last week to explain I had unexpectedly found myself in Cape Town and so could not collect the dress as arranged, they had not known what I was talking about - and I had been speaking to the correct department nogal.)
Anyway, from Stutts went to Red Square where I was delighted to discover that I had vouchers worth R200 so my skin toner cost only R95, then dashed up the escalator to Tsunami to order copious amounts of sushi takeaway for supper - and where I was deligted to discover my favourite sushi maker welcomed me warmly despite my not having been there for months - walked across the pedestrian street to Woolworths where I returned the white beret which made me look like a ghost, chatted about the travails of cancer to a friend I bumped into, collected my sushi, paid for my parking - and then went to my flat to collect a few things, then to my sister when I had a mini supper and then to The Yoga Man who was awaiting the sushi.
And been exuberant ever since.
Normally, that is about two months ago, that would have been an insignificant series of events, except perhaps that I might have phoned Stuttafords manager the next day to apologise and collect the dress myself. But today it was revelationary. Because I walked around in a public place on my own, confident despite my no hair and a hat, and did loads of things. (Forgot I also re-eyed a bag I want at a luggage shop but that at R2600-something is a bit out of my reach.)
After a day of sitting still at the office and feeling nauseous, it was wonderful to walk around freely and exuberantly.
The truth is: if I think about it, I feel ill, as in nauseous. But if I don't think about it, I feel wonderful. So gonna drink my fennel tea, pop a sweet to take away the kak taste in my mouth, and continue to feel wonderful.

a positive mood

Was quite astounded today when, among my emails, was a list of books on offer to review for work and, when the one I wanted was no longer available (I was a few days late to respond as had not been at work), I ended up walking off with three others to review.
That is an about-turn from yesterday's morose mood of despair.

perkier today

Went to work today and it made big difference. Felt like shit when I woke up, was kinda astonished about that, but kinda kept going until i arrived at the office an hour and a half late. But I was there. Spent most of the day going through the hundreds of emails which had accumulated in the six and a half days I had been absent. Nadine kindly offered to do most of my work so I am dealing only with one page which is not too bad - considering that is really only a small part of my job.
But day 3 after chemo is always shit for me.
Delighted that I can now eat fruit again - well let's see how it goes - and tentatively started on a mango this evening, until I had eaten it all!!
Feeling nutured too. Many people were warm and caring and only one so-and-so has been glaringly absent in any comment. So sorry that my having cancer and losing my mother does not fit into her neat, little world as until my diagnosis about two and a bit months ago, we were the best of superficial friends.
Aubrey phoned from London tonight and, as always, it was lekker to chat. Looking forward to seeing him sometime later this year, when I am able to travel again.
Been thinking about the doctor, The Tango Man. He sure does not offer a holistic service, does he, saying very little and not expanding on any ideas. But do trust his medical views. Maybe all oncologists are cold. It's what the GP said. That they think they are closer to God than anyone else.
Oh well. Will get - and am getting - my support elsewhere.

eating confusion

One reason contributing to my feeling of insecurity is that I no longer know what I eat, or even like eating. For five weeks had this stomach hassle so severe I ate only carbs. Then when my blood count went low, was put on antibiotics which appears to have sorted that hassle out - although my tummy is not yet normal. But it did mean that last week had this renewed appetite and with it, a craving for chicken, perogen (a Jewish meat pie traditionally served in soup which I don't think I have ever eaten before)and, by the weekend, a renewed zest for cheese.
Then came Monday's chemo and its inevitable nausea and now I am back to eating simple, plain carbs, although maybe a little more than I ate before.
Been watching the food channel on TV while trying to deal with the chemo nausea and really, don't have a clue as to what I would like to eat or not, what I crave or not, although must say the French tarte tatin (upside-down apple pie) looked deliciously edible. Hoo boy.....
Getting kinda anxious re my eyebrows. They look somewhat thinned out to me, albeit messy cos not plucking them. My friend Lesley who had breast cancer 10 years ago says I am likely to loose them soon, but then her hair on her head fell out in one day and I still have stubble at the back and bits of fluffy regrowth amidst the bald bits. And The Tango Man, my doctor, says it's unlikely - or something to that effect - that I will lose my eyebrows. Meanwhile, I stare anxiously into the mirror whenever I pass one.
And tomorrow is pay day.

planning on going back to work tomorrow

It's amazing how rosy everything appears when the nausea disappears! Feeling so much better; just hope it lasts. And emptied my suitcase, two days since i arrived back home, got the dishes soaking and doing the fourth load of washing since my return. Now just need to finish the Philip Roth novel and make a list of all the tasks I have to do before entering my next immune-compromised week on Sunday.

ho hum

Feeling a little nauseous today, which is day two after third chemo session. Not too bad but not ideal. Have not done a single exercise for about three weeks, maybe a month, and maybe today is the day to resume activities.
Slept better last night but spoke to my dad today and he is still barely sleeping. Thinking of going to see this physic I saw once. I went cos a friend offered to pay. Was curious to see if what she told me correlated with what she had told me. Think might make an appointment.
Notice everything is 'think' and 'might' but guess none of these things are urgent.
Have about 5 minutes left to finish the Philip Roth book I have been carrying around for three months. Maybe this morning is the time to finish it. Maybe. I think. Ho hum.

coping again

Feeling much better and even tempted to delete my previous posting but hell, it is the way i was feeling.
Like this suggestion I found while googling "how to cope with the death of a parent":

"Perform random acts of kindness. This will help to remind one there is tenderness and thoughtfulness in the world. Pay the bridge toll for the person behind you. Smile at the store clerk. Some choose to perform random acts of kindness in memory of the person lost." - from /dying.about.com/od/copingresources/ht/morecoping.htm

And no longer feeling nauseaus. It is strange but eating does help nausea. Ok, add to that a nausea pill - you have to eat 30 minutes after this pill I took and rye bread with mustard and tomato sauce topped with soya sausage was great and no longer feel ill.

Now feel compassion re Jade Goody's death (watching her mom talk about it on sky news).

used to be a coper

Mmm.... used to be a coper. Ok have been a few occasions when i haven't coped so well but somehow did, sometimes with professional help (am a great outsourcer).
Now i feel helpless. As if nothing I do can have any impact. Just going to my mother's funeral was an issue as my blood counts were low. My home phone is broken (using a temp one) - think it was wacked during a storm - and cannot just pop into a telkom store and replace it cos had chemo today. Could not stay on in cape town to work from our regional office (permissible under certain conditions) cos had to come back for chemo and did not want to change doctors. Don't even know the progress of my treatment cos just smile helplessly at doctor and blindly follow all - should say 'the little' - he says. Feel whatever I do or say has no impact and think that could be depression.Am seeing a therapist anyway, cos of my cancer - it seemed a good idea to help me deal with it - so hopefully will deal with this. Feel like I must say repeatedly "my mother died, my mother died" cos can barely believe it. But I do believe it, cos would have chatted to her at least a few times already today, the day I have had my third chemo treatment. Oh my goodness. My sister is having prayers at her house in about 20 minutes but don't think on my chemo day I am well enough for such a public thing. Don't know. Cannot decide if I would feel better if I went. But am sure I look so bad today it might be very bad to be there in such a public arena. Who knows but it starts in 10 minutes and is about 1 minute's drive away and will take me 2 minutes to get ready.
And cannot even feel sad about Jade Goody. Oh I am sad. It is tragic and she was so young and brave i guess, what with the wedding and all at the last minute, and i do think of her poor young sons but hell, my mom was diagnosed, not told it was terminal but that she was the perfect candidate for an operation scheduled for the next week and then five days later was dead. Eerie. But guess she was spared prolonger suffering.

having a nougat day

Arrived back in Joburg yesterday and just been for third chemo session. Eating Melissa's fig nougat which I bought at the airport alternated with Sally William's hazelnut nougat. My friend, the late Tjaart Potgieter's sister Rose makes the Melissa's one, (as well as most of Woolworths's confectionary) from his recipe, and thinking how I wish I could also come up with a recipe which could make me millions.
Just washed my hands - Melissa's nougat is a sticky gorging delight!
Think I am still a little numb re my mother's death and felt a little tearful this morning as I sat there waiting for my blood to be taken. Luckily my blood count was ok so survived the flight and all.
Oh The Tango Man examined me and said I was looking well and I never said a word in response. For someone who has often stated she is a professional question-asker, I am being pretty quiet and putting all my trust in him but I have to trust someone. He also said my stomach hassles must have been a bug which the antibiotics cleared up cos surprisingly it's all gone - and with that, my appetite came back. Had lost 2kg the week before last, then started the antibiotics and viola! First the cramps disappeared, then the diarrhea, and I started eating protein and well, everything!! So now was up 0.2kg from the last time but once am over this chemo nausea, gonna have to watch what i eat.

why i am not writing this week

Just a brief note to explain why i am not writing this week.
My mom was diagnosed with colon cancer a week ago. She died on Saturday morning. Everything went wrong and in the end she had a pulmonary embolism (clot in the lung).And this was after she was told she was a perfect candidate for an operation - which she was scheduled to have tomorrow.
Had a drama about flying to Cape Town - was not allowed to fly on Friday when my sister did. But on Saturday got the ok from the doctor (the replacement one as mine was at an international conference), even though my flight was already booked for 12. Had to wear a surgical mask on the plane and no one was allowed to touch or kiss me. It was only at the funeral yesterday that I realised why the doctor had said that - that is exactly what happens at a funeral: people hold onto you and bend down and kiss you.
Am going to miss my mother terribly. It was a rare day we did not chat on the phone. She was 77 and my dad and her had been married for 54 years - and still got on well.
Do not have my laptop with me - at my sister's house briefly - the one who lives here.
Have lots to say but will say it another time. Back in Joburg over the weekend - flying back in a mask again. Have chemo on Monday.

battling with my new toy

Oh dear. Despite reading the instructions millions of times, am unable to work thermometer properly. Also discovered I could not spell the word properly so had to edit previous posting!
Oh dear. Back to grade school for me. Might have to buy the el-cheapo mercury thermometer instead of this cutting-edge digital one I bought but my sister says they are difficult to read.
Gonna have to get advice. Want to say I am embarrassed but not sure how to spell that either. And to think I am in the word game.....

now the proud owner of a thermometer

Went off to get an injection but it wasn't so simple. Apparently my one result had been adjusted, was no longer as low as it had been and so did not need injection. They also said medical aid would not pay for it if my count was not low enough but I would have paid. What is R2000 or so if you need it?
Anyway they took my temperature and it was normal. Am on antibiotics for a week. Booked off work for today. That is not ideal but had sent a detailed email last night re what I was doing so although some people will have to work a bit harder it should be ok.
I have just now become an unreliable worker as i have no idea when i will be well or when i will be sick.
Then went to the chemist and am now the proud owner of a digital thermometer. You get all these cute kiddy's ones but decided one a restrained conventional digital one which beeps when you can read it. Actually would have loved a comic stip one but worried they were such speed-read ones that they would not be as accurate. Maybe they are more suited for babies of three months than 40-something sane? adults.
Oh the reason for the thermometer is that if my temp hits 38 or more have to phone the emergency line.

wrong blood test results!

Bloody hell. Can you believe it but the lab gave the wrong blood test results. Oh, they were my results but from a week ago (have to have blood count before given chemo). Well about an hour later or maybe more, dunno, got a call: bloods were not perfect. White blood cells are low or something like that, maybe it was something else too but have to go to oncology centre to get an injection today. This will boost my white blood cells for five days. Still feeling shitty and very sweaty and although it's 8 o'clock battling to get outta bed to go there (almost wondering if I need to bath first, hell, it's only up the road and only gonna be out for about 15 minutes) so think I really am sick.

Also been thinking: maybe I got sick cos eating such an unbalanced diet. Cos my tummy is so messed from the chemo, only eat:
protein: tofu and boiled eggs
carbs: rice, potato (boiled or baked), pasta
other: a sauce made of tomato paste and garlic which just touches the pasta or rice, avo, occasional banana, even more occasional other fruit
beverages: water, fennel tea, ginger tea
Ag, it doesn't sound too unhealthy to me now that I have written it down, it's just different to what i used to eat - fish, salads, lots of veggies. But then everything is different to what it used to be.

Oh was also thinking: if i have six chemo treatments, sure will end up in a wheelchair. But then will be in a wheelchair for a while and life will go on hey!!

off to the clinic at night

Fak, Not only did i leave work early to come home and sleep (felt dreadful) but tonight had to go to morningside clinic for blood tests. Popped into my sister for supper (well more for a chat, managed half a potato and avo) and there was a doctor there when i arrived. Had popped into visit them. He is a cardiologist but I mentioned I was not feeling well and that i was hot. He took my temperature - it was 38- and that is the one thing they said u must phone emergency for. But both The Tango Man and his sidekick are out the country at a conference. Anyway, this cardiologist said i had to go to morningside for tests and have cultures taken as might have septocemia (sp?) or something.
He said i might need to be admitted. Faak.
Still getting the culture results tomorrow but thank god all was fine with my blood count. Have already contacted work and sent off a detailed email re what to do if i am not there, but will re-evaulate tomorrow. If don't go will have to go see a dr as will need a certificate cos it's a friday. But if feeling sick, am not going.
Getting bony from this minimal eating. Paid dieticians thousands and thousands in the past and now trying not to lose too much weight too quickly cos then will really look sick!!
What a laugh.

oy ya yoi

Felt super dreadful this morning, not sure why. But am not at work and just sitting still. Not gonna get up unless it's to go to the toilet. And ate my toasted hot-cross bun with honey so will also feel better from that.
Dunno what brought on this sudden yuckiness. Does it matter? I just have to deal with it. And if I don't move, it's ok. Now just need someone to refill my polystyrene cup with ginger tea - ah, thanks Victor.

Think if I continue to sit still will be fine.

And guess what I did this morning? Bashed my car's side mirror which I had replaced on Saturday but this time. think maybe, hopefully, some super-glue will do the trick.

You can get through this

My dear friend Zilla in Australia, a former colleague from way back, offered to send me this book about breast cancer, apparently a hit in that country. Written by copywriter Domini Stuart, just leaving the book lying around helps as the title "You can get through this!" written in a bold and large typeface, reinforces such a positive message.


http://www.doministuart.com

Anyway, besides being very well written and an easy read, quite a few things she had to say astounded me, not least her view that one does not need all the facts.

In a chapter titled "You don't need a medical degree to survive" Domini writes: "Do your homework - but only if u want to" and then goes on to say:

"My surgeon told me that one aspect of my treatment had been influenced by a recent study. When I mentioned this to a friend, she was astounded that I hadn't asked for details of the study so that I could read it for myself. She would have wanted to. I msot certainly didn't.
"As far as I was concerned, my team understood the significance of the findings a lot better than I could ever hope to, and they were a lot better placed to decide whether the treatment was appropriate for me. This was all I needed to know."

I agree with Domini. As much as on occasion I think The Tango Man has not told me enough, I have not asked for a prognosis for example as I don't want to know - I am going to get through this and that is all I need to know. Whatever he tells me to do, I do, which is for someone who doesn't take instructions well and is in the information game is quite something - but then, I respect him which is more than I can say for some people who give me instructions.

Oh, and as for the internet, which she also warns against, I know from the past, ie pre-cancer, that when it comes to medical things it is very easy to come with research which convinces you you are dying. So for cancer, the recommended site is
http://cancer.org which is the site of the American Cancer Society. Explore it, it is a useful source of all sorts of information.

And yes, as much as my world has temporarily shrunk and I am getting used to feeling kak-ish as the normal ok-ish: Yes, I will get through this!

cooking

What does one do when one cannot go out, either cos you feel like shit or else you have had chemo and are in that immune-compromised week (days 7-14 after treatment) and cannot go to public places apart from work?

As someone who used to go out six times a week, maybe five if I had a chilled Saturday night, spent Sundays declaring "what's next on the agenda?" and at the very least dashed off from work to go to gym, this enforced stay-at-home has been quite a change.

My colleague Marianne, who has been plagued with severe injuries, some from extremist mountain climbing and most recently, some severe knee problem which saw her holed up for about three months (apart from work where she temporarily changed her job to a sedentary one so she could sit with her injured leg on a chair with books and cushions) came with a brilliant suggestion in passing one day: cook, she said. She said that some days her energy was low and she could not do much but others it was better and she had fun exploring things to cook.

I have been doing that, I just realised. And even though my choices are super limited as still banned from veggies, fruit and dairy and cannot stomach protein apart from tofu and boiled eggs (did eat boiled clams the other night though), it is amazing the fun one can get from cooking. And even if I am not allowed out, can visit a friend if he/she is not sick and can always cook the basics which the friend(s) can augment with more interesting and easy fare such as cheese.

So well done Marianne, it works. And thanks.

a friend suggested i buy this hat!

David Ahntholz for The New York Times
PAINFUL MYSTERY Susan Droman of Akron, Ohio, discovered she had cancer of unknown origin after it had spread to her vertebrae. “You’re always in limbo,” she said.

If you want to read the story (no reference to the hat):
http://www.nytimes.com/2009/03/10/health/10tumo.html?_r=1

shivering in the office

Feel kinda dressed for the north pole - ok, wearing sandals but my skirt is long, and wearing a thin corduroy jackets (a new purchase from the hypermarkat at the grand price of R199!) and a thick winter scarf, and shivering.

Oh, and of course, a hat is de rigeur (is that the correct term?). Today it is a grey tweedy winter weight one.

Going to have to start dressing even warmer.

Being cold is yet another chemo side-effect. Probably not helped by a super-cold airconditioning - well, an aircon which varies depending on where u sit.

who reads this blog

Just clicked onto the country stats for this blog. Not surprising that 79% of recent visits are from SA and 11% from UK (have three friends there) and 6% from US (quite high as only know two of those). What is more fascinating are the singles from Canada, Romania, Germany and Sweden - the person from Portugal contacted me. And it's my friend Zilla in Australia.
Perc. Country Name
79.60% South Africa South Africa
11.00% United Kingdom United Kingdom
6.60% United States United States
1.20% Portugal Portugal
0.80% Australia Australia
0.20% Canada Canada
0.20% Romania Romania
0.20% Germany Germany
0.20% Sweden Sweden

another number i have been crunching

Forgot another number that has popped up in my life.

It is less than two months since I was diagnosed - well since I heard the diagnosis on January 15. Boy, how things have changed since then.

Oh and been scouring the net, again, and really, diarhhea is a chemo side-effect. Dunno why The Tango Man said my tummy hassles are not one bit usual. Gonna phone there tomorrow to discuss recent stomach problems.

Just wish I would read. Gonna force myself to read at least one page just now.

a bit shellshocked

Someone close to me has been diagnosed with cancer and I feel a bit shellshocked. Not sure what I feel, which I suppose is not a good thing, but guess I will get there. Kinda suspected it for a few days and was upset so when the test results came today I feel numb.

It is all so fakking scary.

That person has to have an operation which is high risk so it is scary.

Otherwise have been plagued by numbers. Firstly, got confused as to which day was actually day 7 after treatment. If had chemo last Monday, then I had incorrectly calculated day 7 to be this Monday when in fact it was Sunday. So maybe was a good thing did not feel amazing and apart from a fairly lengthy visit to Pick n Pay, did not go out.

Secondly, miscalculated the number of hats I bought. Now this is really irrelevant but see I wrote I had bought 11, but in fact I bought 8. Then two more from Young Designers Emporium so have 10, not the 13 I thought.

Then am working out the number of chemo side-effects I have. Don't actually want to compile the list and don't think I will print it but it's at least a handful. Two at the moment are worrying (for me) but that is just being miff.

And don't really feel miff right now. Shellshocked, yes. In despair, no. Anxious, yes.

Incidentally in the past week have not done a single exercise. One restorative yoga pose once, and that's it. Planned to do the feet up at about 5am this morning when woke up for second time but was so damn cold, went back to bed visualising about five blankets being put on top of me so that I could fall asleep again.

Life is upside down but kinda getting used to these quiet nights.

how to wear hats

http://www.tlcdirect.org/articles.aspx?art=129


Just found this brilliant site (see above) on how to wear hats if you have chemo hair loss. Wish I had read it before I went hat shopping!

Anyway, shivering here in the office. Think gonna unpack winter clothes tonight

being a different person

I am a different person:

* I wear hats and now not only have to decide what to wear, but have to decide which hat/cap suits it, is different to the one I wore the day before or the last time I went to that place (or decide that does not matter);

* I eat differently so cannot merrily walk into a shop and buy food; I have to think about whether I can actually eat it/want to eat it; and also have to choose restaurants based on what I eat there rather than whether the place itself appeals;

* I feel different. I have to remind myself not to be too exuberant or, what I really mean, not to be too physically active (although today's stroll around a supermarket kinda took the cake....) and also not to stand too long - else I feel dreadfully dizzy and yuck.

None of this would be a hassle though, it's kind of an adventure, if only I did not feel sick. Don't enjoy the feeling yuck part. But having different tastes is not so bad as an interlude.

sunday evening musings

Started feeling ill walking around Pick n Pay supermarket today and I wasn't even wielding a trolley or carrying a basket. My friend said I looked like I was just going to make it to the car, in other words, dreadful.
Spent much of this weekend not feeling so great which meant that apart from the fab dance umbrella gala show on Friday night and brief shopping on Saturday followed by lunch, did not go gallivanting this weekend.
Sipping ginger beer now (think it helps).
But otherwise, weekend was ok. Read more of the paper than I normally do even if much of it was boring, apart from some of Lifestyle and Travel & Food, which is always my favourite section. Mail & Guardian was boring too. Mike spoke this week of the problem of dull, boring and predictable papers.... mmmm.....

Oh incidentally, although am almost bald, finding the hairloss far less of an issue than before. The other side-effects of the chemo are far more debilitating such my still messed up tummy - despite The Tango Man's insistance that it did not seem to be a chemo side effect, not the way I had described it - and also, the dizziness I feel if I exert myself too much.

Oh, and once more bravo to yoga. Was about to take a pill for severe stomach cramps when did the feet up restorative pose instead, and voila! The pain subsided without the need for medication. Ok, it must have taken about 30 minutes but it went and is now gone.

Had some confusion today re whether tomorrow or tomorrow is seven days from treatment which was on Monday. But either way, this week is a non-going out week, apart from work, as my immune system will be compromised from last Monday's chemo. Hope I do some reading. Philip Roth's The Plot against America is darn heavy to keep carting around.

Oh and Friday, or it could be Saturday, marked eight years without smoking. Can barely believe it myself.

bullshit shavathons

Yesterday was Cancer South Africa's (Cansa) Shavathon day which encourages people to shave their hair in solidarity of those who have bald heads cos of cancer. I think it's bullshit. Really. My friend wanted to go have his done - his dad is in remission - but besides being busy, I declined to go with him as I think it is total bullshit.
What does it prove?

Rather give money to a worthwhile cause like this DJ who clearly does not have medical aid and needs money to pay for his chemo:

http://www.facebook.com/home.php?#/event.php?eid=55582032419&ref=nf

Funnily enough, a friend of a friend at Dance Umbrella last night said: Oh I thought you had taken part in the shavathon, and could not believe it when I heard yours is for real (which really just proves that one might as well go around bald since everyone knows if you're wearing a hat anyway - although did think last night's black and white pin-striped trilby from Young Designers was pretty cool. Oh and apart from that and a few curious questions from friends I had only had internet correspondence with so far, managed to have a fab night without cancer or my hair loss being an issue, although do feel I tend to walk around less and go up to less people at functions now. Must overcome that.

On the other hand, got this broad smile of recognition from a woman at the Listeners' Library today. She clearly had no hair and not from some damn shavathon; she wore a tiny scarf. She was so excited to see me but think I merely gave a sheepish smile back. Smack!

CANSA'S SHAVATHON CAMPAIGN:
http://www.shavathon.org.za/cgi-bin/giga.cgi?c=1890

mixed signals

Had a brief encounter yesterday which lingers in my mind. David, one of the employees in the office, came up to me and said: "You're looking really good these days" - or something to that effect.

I responded: "Oh I have cancer" - even as the thought crossed my mind that he was probably referring to my new habit of wearing hats.

My response was inappropriate and blunt but it was not a good day. Day three after second session of chemo and was nauseous as hell.

But it does prove the point that the Yoga Guru pointed out a few days ago and which I wrote about: that headgear in SA today is a black thing. For David, who is black, my wearing hats was attractive and I took the compliment and shoved it back harshly.

Meanwhile, went to Dance Umbrella tonight. Saw Boyzie Cekwana's piece. Intriguing, puzzling, frustrating cos of the lack of dance, but kinda haunting.

some of my hats

My hats are getting on my nerves. Not the hats themselves as much as the hassle of choosing what to wear based on which hat will go with the outfit, whether one can go through to the night in that hat or it is exclusively daytime and anyway, in most of them can see I am bald/balding (still - still a fair amount of stubble but not for long.....)

Am contemplating dropping them altogether..... dunno.....

The truth, however, is that my biggest hassle right now is that it is day three from my second chemo treatment and I still feel nauseous as hell. I wish it would pass already. Want to feel better. Want to go to dance umbrella. Already missed Nimrod Freed's productions and know it's not the end of the world but would like to see Boyzie Cekwana's show tomorrow night and attend the Gala night on Friday. Let's see.....



ROBYN SASSEN'S REVIEW OF NIMROD FREED'S SHOW AT THE 2009 FNB DANCE UMBRELLA: ©Artslink.co.za


My View by Robyn Sassen - Triple Bill (Freed & Pesa) - 03/03/2009 - Artslink.co.za News

Copyright
Artslink.co.za
© 1997-2009


My View: Triple Bill (Freed & Pesa)

Provocative grouping of works with Sello Pesa and Nimrod Freed, leaves you simultaneously amazed, unmoved and blown away.

Triple Bill, featuring “On Guard No Guard” choreographed by Nimrod Freed/Tami Dance Company (Israel), with music by Balkan Beat Box, Hendle, Pink Floyd and the soundtrack of “Mood for Love”, lighting design by Revital Teva and Freed and costumes by Itzik Gabai and Freed. Performed by Shani Britner, Elinor Chertok, Merav Dagan, Itzik Gabai and Yoav Grinberg.

“Same But Not Different” choreographed by Sello Pesa/Ntsoana Contemporary Dance Theatre with music by Yann Costa, Andrea Boccelli and Sarah Brightman. Performed by Humphrey Maleka, Brian Mtembu, Bonolo Ratshidi and Fanny Skura.

“Window” choreographed by Nimrod Freed/Tami Dance Company, with music by Phillip Glass, Pink Floyd, Beth Gibbons, Young Guards and Timo Mass and lighting design by Martin Adin and Freed. Performed by Shani Britner, Elinor Chertok, Merav Dagan, Itzik Gabai, Yoav Grinberg and Gil Kerr. Wits Theatre, Braamfontein. Until March 3.

A provocative if uneven triple bill featured on the first Monday of Dance Umbrella, offering an aesthetically untrammelled set of values, but an abstraction of social discourse that dangerously courts with the utterly obscure, while it offers a fresh and bracing take on chastity and sensuality.

“On Guard, No Guard” bills itself as questioning the obvious, but the cassocked dancers evocative of thirteenth century Franciscan tradition are startlingly far from obvious and as the work unfolds, this element of aesthetic and conceptual and real surprise evolves. The first word that came to my mind was “penetenziagate”, a word used by a monk with a sinister heretic past in Umberto Eco’s Name of the Rose. Indeed, heretic thought, deed and self-flagellation is not amiss in this overtly sexual work which deals with the chastity of religious convention with a dynamism, purity of form and an acuteness of collaborative movement that we have not seen on our dance stages for a long time. Here we have a body of dancers so attuned with one another that there is no preference that one can indulge in watching: each shines in his or her sense of self and sense of conviction. No one slips out of focus. In “Dying, Dying, Dead”, Dada Masilo dares to go bare, cocking a snoot at conventions surrounding topless black women and the sexuality of dancers, but this toplessness speaks primarily of vulnerability; here we have Shani Britner engaging with her toplessness blatantly; covering her exposed breasts in response to the violent and hysterical reaction of cassocked dancer Itzik Gabai. It’s a tightly conceived, utterly mesmerizing and highly evolved piece of dance, which leaves you clamouring for more.

Bracketed by the two Israeli works, that by Sello Pesa is .....

The third item on the programme, Freed’s “Window” is a remarkable foray into the possibilities of unclichéd poetry with the body. Erotic toughness seems par for the course with Freed’s oeuvre, which smoothly blends physicality with lyricism, resulting in intimacy juxtaposed with rawness, correlating with oblique references to strife and war, with the use of music, from Pink Floyd, in particular. In one element to the piece, a German song is sung by Beth Gibbons. The context of the material in relation to Elinor Chertok’s circumnavigations around it in a red dress powerfully evokes between-the-wars Germany in its sense of emotional and sexual freneticism. It’s dance created on the delicate cusp of a world about to change identity; the abstract elements of this beautiful piece play into these ideas without literalness, but with fervour. “Window” simply takes your breath away.

other cancer diaries

Finally finding other people's blogs about their journeys with cancer. Some are pretty sobering and sad, others more invigorating. Been googling factual things but when I tried "cancer diary" many came up. Here are some:

http://www.dailymail.co.uk/health/article-559124/My-battle-Big-C-A-breast-cancer-diary-captures-womans-ultimately-uplifting-story.html

http://www.health24.com/medical/Condition_centres/777-792-802-1536,45486.asp

http://www.ringmar.net/cancerdiary/

http://slideshows.health.com/slide_shows/10163/slides/10159

popping pills

Sitting in a restaurant the other night, my lips apparently pursed in agony and not really focusing on the conversation, my friend turned to me and said: "Why are you so averse to pill popping? Nothing you can take now is addictive so just take pills if they can make you feel better."

Thought about it and agree. But now wondering: took an anti-nausea, had a potato for lunch, slept, and have not even been awake for an hour and thinking of taking another anti-nausea which has to be taken half an hour before supper (which is likely to be another potato as no desire to eat anything but finding a boiled potato is edible when all else fails the test.) Is that a bit much? What the hell. Lemme put the stove on.... and pop that pill. Not even sure I am nauseous but have that damn chemo metallic taste in my mouth which makes me feel sick. Maybe time to do some restorative yoga too.

chemo and food

Forcing myself to eat a boiled potato - added some avo, touch of mayo, worcestershire sauce and tabasco sauce - as the only way i could take the anti-nausea pill was to eat something half an hour later. And a potato seemed bland enough and it is pretty nice.

Maybe not so hungry cos ate a coconut macaroon earlier. My friend Tania came to visit (it's day two after my second chemo treatment for breast cancer and off work for two days) and asked her to bring me a coconut macaroon from Fournos. That was my latest craving. Don't think I have eaten one for years but have noted them at Fournos. And guess what? Googled it and apparently coconut, easiest eaten in macaroons, are good for diarrhea so no wonder I longed for one.

Meanwhile, the meat craving has gone and am gonna give away the beef patties I craved and bought on Saturday. Bizarre. Every day a new craving and always what my body needs. And always a complete departure from what I used to like eating, before I started chemo. Was watching this food programme on TV today which showed freshly cooked salmon with a tomato and basil sauce. Now that was my kind of food - fish with a tomato-based sauce. Today I looked at it and thought, I have no desire to eat that now. And from what I have read, this change of diet is par for the course for chemo.

COCONUT MACAROONS AND UPSET TUMMIES:

http://articles.latimes.com/2008/mar/31/health/he-pharmacy31
http://www.coconutdiet.com/digestive_disorders.htm

TASTE CHANGES WITH CHEMO:

http://chowhound.chow.com/topics/349065
http://www.bellaonline.com/articles/art36439.asp

what it can also mean to 'go for chemo'

Going for chemo (see my previous posting) can also mean that u start feeling sick. I feel bloody awful right now, nauseous but not getting sick. Don't want to eat but then ate so much this afternoon from the chemo they gave me with the chemo, also intravenously, that have no desire. Plus now feel sick.
The trouble is that the only anti-nausea pills i can take now must be taken half an hour before eating, and I cannot eat now.
Oh well. Sipping water and tea.

what it means to "go for chemo"

THE 'RED DEVIL'

Believe it or not, but the photo above is of the red devil chemo as it was being 'dripped' into me today, Monday March 2 2009.
Now what I am going to describe is what 'going for chemo' means for me on my treatment. Every cancer is different. Some people have to book into hospital and have it for 10 days in a row. Some people have two different types given to them simultaneously, others have what appears to be about a litre of stuff given to them which can take about five hours. There is also oral chemo (pills) which is sometimes given in addition to (I think at a different stage of the treatment) the chemo on a drrip.

Ok, so now that you know you cannot say "but that is not what my cousin/aunt/friend did", this is what I do.

I go to the treatment centre which is about 10 minutes from where I live. The room in which you have chemo is open plan. Last time there was a support group person hovering around chatting to people which was great but there was no such person there today which was actually a pity. (Think am almost ready to contact a support group one of these days).

What people do during chemo: The room is packed and sometimes people have to wait to start treatment. The person having chemo sits on a comfortable lazyboy which has an optionable footrest (I like it) and the person or people who come with you sit on other chairs. It is quite usual to have someone come with you and - believe it or not - to bring food and what not. The person next to me today was beading (making beaded jewellery) and her friend was crocheting. I bought food but only ate some sweets, drank some water (not enough to want to go to the loo although u just take the drip thing with you, minus the stand), and drank the fennel tea (more on that at a later stage but it really is a godsend for settling tummies - and recommend freshpak which is a mix of rooibos and fennel).

First the blood test: Anyway, you start off with a blood test to check your blood count - white blood corpuscles, red blood corpuscles and platelets. Not sure if iron is part of that but that also comes up (I am pretty medically illiterate). Anyway, if the blood count is not ok, they don't do the chemo. Delay it. Luckily mine was fine.

Quick weigh-in and blood pressure: I had lost about one and a half kg on their scale since the last visit just over three weeks ago and my blood pressure was the lowest ever, 110/60 - it is usually 120/70 which I have always been told is on the low end of normal - but nobody was alarmed.

Doctor's appointment: Then I see the doctor. He answered all my questions and then examined me. Said the lymph nodes below my armpit had become softer and was pleased about this. And of course the rash which had appeared on my feet yesterday and legs today had disappeared!

Then the drip: Sat on the chair and they put a hot water bottle on my arm to warm up the veins. Then the drip (the link below explains that it's a cannula or flexible tube) into my hand, this time my left hand, and the first 'treatment' which is a saline and cortisone mix. Last time I was horrified as to why I was getting cortisone (it makes me eat like a pig - for eg have had about four lunches today!)

Oh, asked The Tango Man about the cortisone and he said it was anti-inflammatory, anti-something else which I did not catch/understand and did not think it was necessary to get repeated, and helps the chemo penetrate into the cells. Makes sense to me.

The cortisone mix takes about half an hour, I think, if not then a little less, and then the proper chemo starts. The red devil is bright red and yuch. It gives you a metal taste in your mouth almost immediately, makes your urine red immediately for a day or so (need to drink some water to wash it out, lemme take a gulp now)and is the cause of my hair loss (incidentally it is going fast but still not completely bald).
Then the other chemo.

Last time the whole thing (the drip) took about two and a half hours. This time it took about an hour and a half; the nurses say one's body gets used to the chemo and it takes quicker after the first treatment.

I don't enjoy the experience but it really does help to have a friend there. The drip hurts but when you are chatting to a friend, while eavesdropping on other's conversations and gossiping about others' hats and size of their chemo drips, it helps a lot.

Oh, and I have to go every three weeks.



THIS IS A LINK TO THE PRINTOUT I WAS GIVEN AT MY FIRST CHEMO TREATMENT:

http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Combinationregimen/AC

just back from second chemo session

Just back from second chemo session and not feeling half as drugged as I did last time. And it also took less time: one and a half hours rather than two and a half, which the nurses said is usual. Apparently one's body gets used to it so after the first treatment, it goes quicker.

Still didn't like it at all but it did seem better. The yoga guru said I was less anxious this time. Dunno. But I guess if u know what to expect, it is less traumu-inducing.

Doctor, The Tango Man, was as fastidious as ever: checked my watch and he took me exactly at 9.45am. Impressive.

And amazingly, despite Saturday afternoon's dizziness and shaking, I was not anaemic but my blood pressure was lower than ever - 110 / 60 but they did not seem to think that was a hassle. Was about a kg and a half less than the last visit but guess that's ok. Look, I have been trying to lose weight forever but now realise that I don't want to lose it too quickly cos then will really look ill.

Oh, and was surprised to hear that my so-called worst side-effect is not a side effect. Don't know if all my stomach hassles have been caused by anxiety but he said what I described is not from the chemo. He said it should improve now so let's hope so.

Again, I liked The Tango Man. Yes, he does have a difficult, not smooth manner, but I do like him. And he gave me hope well just by reiterating that I might not need surgery.

PIC TO BE POSTED:
Waiting for my friend to send a pic of the chemo I have; then will post it.

CONCERT IN THE PARK:
Oh yesterday was quite a relief. Went to this music concert at Emmerantia Dam to hear Zimbabwean musican Oliver Mtukudzi among others (he is the one I like best). It was a friend's son's two year old birthday party (kinda inappropriate but what the hell) and I had not decided whether to say anything about my cancer. Wore a large sunhat, nobody said a thing, I did feel I was a bit quieter than usual but the afternoon passed by without a murmur and what a relief not to have to chat about it.
Phew!!!

MORE ABOUT OLIVER MTUKUDZI

the most unsettling part of the chemo food cravings.....

Penny Siopis
Pinky Pinky: Wounds (detail) 2003-2004
oil and found objects on canvas
380 x 122cm
www.artthrob.co.za


I used to go to the shops on the weekend, make sure I had what I liked to eat - herring, smoked salmon, lots of veggies and some fruit and of course, fresh fish for the next few days - and life went out with lots of eating out and some functions.

Now I am bound by cravings. "I feel like a baked potato", "I want pasta", "I don't want to go near fish", "No salad for me thanks", "No, I am not drinking at the moment, thanks. Water is fine".

And I have to make a concerted effort to make sure I eat protein, which is mainly tofu and sometimes soya sausage.

And then yesterday (see previous posting), I craved meat, and nuts, which I usually detest.

Oh well. I feel like a baby. Like Penny Siopis's pinky baby. (Ok, that is not what everyone says it's about, it's not a baby apparently, but it does make me feel like one of those figures.)

PINKY PINKY:
"Siopis will be presenting an installation of her Pinky Pinky series, which taps into personal childhood memories, dreams and local folklore. In these works, Pinky Pinky is a vaguely threatening figure, the embodiment of anxieties of a personal, social and political nature." FROM WWW.ARTTHROB.CO.ZA

ABOUT PENNY SIOPIS:
http://www.artprintsa.com/penny-siopis.html