Written about three draft postings. One on my unusual food cravings since I started chemo about three and a half weeks ago, another on my hatred of hats and one on... dunno.
Now tired and going to skim through something to read.
Meanwhile, I think I want a brandy but one sip and it's yuck, my mouth still tastes funny after eating a piece of cheese, a foodstuff I used to adore.
And gonna have to plan my entire outfit tomorrow around which hat is best to wear for that occasion and which one doesn't hurt cos my scalp is so sensitive since my hair started falling out from the AC chemo. Think I want to return most of the hats I bought (the unworn ones with the tags on) cos you can see I am balding - well balding but the sides are bald). Yet the yoga guru says u can see in all the hats that I am bald/balding... well, except the white broderie anglaise one I wore today but wear can i get more in that shape that are also suitable to wear at night? Oh damn it.
And to think I was scouring around that exclusive little butchery in Dunkeld West today, craving red meat, something I usually eat only once a month and then only spare ribs. Yesterday ate biltong too, the second time I have done so since starting chemo just over three weeks ago. Maybe I lack iron. On the refined foods and pasta carboloading diet I am presently indulging in, guess it's not that surprising. Gone are the constant fish meals, the salads, the variety of foods. Now I like hot cross buns (went to two shops today but they were sold out), and anything carb. And no alcohol. Bizarre.
I live in Johannesburg, South Africa, where I was diagnosed with breast cancer on Thursday January 15 2009. This is my journey with cancer and other musings as surveyed - initially temporarily hairless - from under my hats.
Saturday, February 28, 2009
Friday, February 27, 2009
pics of my declining hair - going, going, almost gone
MESSY HAIR LOSS (taken either on day 3 or 4 of hair loss which started exactly two weeks after my first chemo treatment)
BALDING SIDE PATCH EXPOSED WHEN PURPOSEFULLY PUSH HAIR ASIDE (taken on Friday February 20, day three of hair loss)
BALDING SIDE PATCH EXPOSED WHEN PURPOSEFULLY PUSH HAIR ASIDE (taken on Friday February 20, day three of hair loss)
AND NOW STUBBLE WITH BALD PATCHES (taken on Friday February 27, six days since I shaved my head and 10 days since it first started falling out)
If I were black.....
AWARD-WINNING DANCER DADA MASILO CHOOSES TO SHAVE HER HAIR AND LOOKS FAB
Looked at the packed auditorium at the Dance Umbrella at the Wits Theatre last night and at least one third of the people were wearing hats or caps. I work in an environment where many of my colleagues wear anything from peaked caps to trilbys to work.
So why do I get constant double takes because I have taken to wearing headgear to cover my increasing bald head from the chemo?
"Because you are white," said a friend. "If you were black, you could be bald and nobody would say a word."
Yes, it is true. Maybe this is heightened cos we live in racially aware South Africa, but wearing headgear is very much part of black urban culture, especially among young people. For whiteys, not at all.
Last night I walked past dancer Dada Masilo who is beautiful and bald without blinking an eyelid. And I doubt any of the hatted (is there such a word?) audience members last night were white.
Oh well. Just hope the word spreads fast that I have cancer and I don't have to continue to face those awkward double-takes as I go about my life, today in a pink velvety peaked cap with a large butterfly clipped onto one side of it.
Dada Masilo - scroll down for info plus a beautiful pic by Suzy Bernstein
http://www.sagoodnews.co.za/arts_entertainment/young_artists_awards_for_2008.html
Dance Umbrella - http://www.at.artslink.co.za/~arts
Thursday, February 26, 2009
memories of the discovery of the cancer
I want to record some things that have happened before they escape my memory, the things that occasionally flash into my head, things which relate to finding out I had cancer.
* When I found the lump below my armpit, I wasn't sure which kind of doctor to go to. In the end decided to go to my GP as wasn't 100% sure if that part of the body counted as the breast. Had the last appointment of the day and when the doctor said you have to go for a scan, I remember saying: "Now?" and quickly thinking how I was sure I could fit it in before I went out for dinner. It was 4.45pm and Christmas Eve and I was going out for dinner but could always make it a bit later. But there was not a doctor in town to do the scan and, unbeknown to me at the time, no one to do it for the next three weeks."Oh don't worry," said the doctor. "Whatever it is, if it anything,you have caught it early." Bullshit. He must surely have known it was lymph and if it's lymph and cancerous it means it has spread from the boobs. Wonder if that is why he did not charge me for that appointment. Because he knew it was likely to be bad. "Oh, it's just a referral," he said.
* Finally had the scan on January 13 at 9am and a core needle biopsy was performed. It's lymph said the doctor, a prof who was new at the practice and did not know to work the pump on the apparatus properly but the main doctor came in to help. Still have the mark where it was done.
* Two days later, on January 15 at about mid-day, sometime after 12, I phoned to get the results as the doctor had not phoned me. I was at my desk in the office - an open plan office - and never thought if it was a bad result, would get it on the phone."He'll call you in if there's a problem," said a friend reassuringly. Hmmmph!! "Oh I have your file right here and was about to phone you," said the main doctor. "They are abnormal cells."
"You mean it's cancer?" I said increduously. "I don't like to use that word," he said. (I get upset just thinking about that conversation now.) He told me that it was just a process, that I should go see my GP - I said I would not but later did because I was so upset and needed to see a professional who could clarify things for me. I asked him to read out the exact words on the biopsy report and to this day it amazes me because what he read out was not on the report of which I later got a copy (not from him but another doctor). He lied to me. Soft-optioned it. He did however give me his home number should I want to phone him. I never did. But later did grow to respect him for other things he said and jokingly referred to him as "my new best friend". I don't think he handled the disclosure well at all but later in a way made up for it as he became an impartial voice in the confusing confrontations with doctors which continued.
Oh well. Let's make this memories or documentation part 1.
* When I found the lump below my armpit, I wasn't sure which kind of doctor to go to. In the end decided to go to my GP as wasn't 100% sure if that part of the body counted as the breast. Had the last appointment of the day and when the doctor said you have to go for a scan, I remember saying: "Now?" and quickly thinking how I was sure I could fit it in before I went out for dinner. It was 4.45pm and Christmas Eve and I was going out for dinner but could always make it a bit later. But there was not a doctor in town to do the scan and, unbeknown to me at the time, no one to do it for the next three weeks."Oh don't worry," said the doctor. "Whatever it is, if it anything,you have caught it early." Bullshit. He must surely have known it was lymph and if it's lymph and cancerous it means it has spread from the boobs. Wonder if that is why he did not charge me for that appointment. Because he knew it was likely to be bad. "Oh, it's just a referral," he said.
* Finally had the scan on January 13 at 9am and a core needle biopsy was performed. It's lymph said the doctor, a prof who was new at the practice and did not know to work the pump on the apparatus properly but the main doctor came in to help. Still have the mark where it was done.
* Two days later, on January 15 at about mid-day, sometime after 12, I phoned to get the results as the doctor had not phoned me. I was at my desk in the office - an open plan office - and never thought if it was a bad result, would get it on the phone."He'll call you in if there's a problem," said a friend reassuringly. Hmmmph!! "Oh I have your file right here and was about to phone you," said the main doctor. "They are abnormal cells."
"You mean it's cancer?" I said increduously. "I don't like to use that word," he said. (I get upset just thinking about that conversation now.) He told me that it was just a process, that I should go see my GP - I said I would not but later did because I was so upset and needed to see a professional who could clarify things for me. I asked him to read out the exact words on the biopsy report and to this day it amazes me because what he read out was not on the report of which I later got a copy (not from him but another doctor). He lied to me. Soft-optioned it. He did however give me his home number should I want to phone him. I never did. But later did grow to respect him for other things he said and jokingly referred to him as "my new best friend". I don't think he handled the disclosure well at all but later in a way made up for it as he became an impartial voice in the confusing confrontations with doctors which continued.
Oh well. Let's make this memories or documentation part 1.
rushing about
After a week of not being allowed out because of a compromised immune system, and with a second bout of chemo on Monday, am busy rushing out and about. So although have loads to write about, it's all on hold until I have a moment.
Am once again busy at work but just a quick note about last night's dinner party. In between avoiding the delicious salad and the creamy dips - still no dairy and uncooked veggies 'cos of my not-so-good tummy chemo side-effect - and eating pretzels and bread with a non-dairy fish dip while sipping water, my host Leon told of a brilliant find should my eyebrows fall off. Hoping they won't but they might but Leon said not to worry, just to pop into Cosmopolitan at Hyde Park and buy this amazing pencil for about R300 which adds bits of hair when you draw in the brow line.
Plus he showed me how to tie a scarf with a bolla (bun) at the nape of the neck although chickened out of that this morning to go with a cap.
Plus amazing Leon showed off his hat collection and I am quickly dashing off to Young Designers to buy the animal print trilby which he purchased there recently.
So even though I felt nauseous and exhausted by about 10pm, it was well worth going to the dinner party, not least because of an avantgarde designer prancing about, an old friend John telling of his life in Taiwan and getting all the theatrical skinner from another old friend Toni.
If you want to know more about Leon, his website is www.makeupstar.co.za
Am once again busy at work but just a quick note about last night's dinner party. In between avoiding the delicious salad and the creamy dips - still no dairy and uncooked veggies 'cos of my not-so-good tummy chemo side-effect - and eating pretzels and bread with a non-dairy fish dip while sipping water, my host Leon told of a brilliant find should my eyebrows fall off. Hoping they won't but they might but Leon said not to worry, just to pop into Cosmopolitan at Hyde Park and buy this amazing pencil for about R300 which adds bits of hair when you draw in the brow line.
Plus he showed me how to tie a scarf with a bolla (bun) at the nape of the neck although chickened out of that this morning to go with a cap.
Plus amazing Leon showed off his hat collection and I am quickly dashing off to Young Designers to buy the animal print trilby which he purchased there recently.
So even though I felt nauseous and exhausted by about 10pm, it was well worth going to the dinner party, not least because of an avantgarde designer prancing about, an old friend John telling of his life in Taiwan and getting all the theatrical skinner from another old friend Toni.
If you want to know more about Leon, his website is www.makeupstar.co.za
Wednesday, February 25, 2009
Feel like I am breaking the rules
Just a quick note (am in the office) to say that went to a restaurant last night and had this table talking about me, with the one person even turning around to look at me.
My friend and I chatted about it afterwards and he said he had never seen anyone in a restaurant before with a cap/hat but obviously no hair underneath. I have seen people like that - and admit I have always stared - but can only think of one recent occasion and that was at a doctor's rooms.
So am I breaking the rules?
Anyway, enjoyed the food - fish and ginger soup and then shared tofu with shitake mushrooms and sliced fish in ginger sauce, followed by oolong tea - at Red Chamber in Hyde Park, my new favourite restaurant.
My friend and I chatted about it afterwards and he said he had never seen anyone in a restaurant before with a cap/hat but obviously no hair underneath. I have seen people like that - and admit I have always stared - but can only think of one recent occasion and that was at a doctor's rooms.
So am I breaking the rules?
Anyway, enjoyed the food - fish and ginger soup and then shared tofu with shitake mushrooms and sliced fish in ginger sauce, followed by oolong tea - at Red Chamber in Hyde Park, my new favourite restaurant.
Monday, February 23, 2009
something i never thought about
Got the expected double take on the escalator when I went to work today with a cap - but clearly no hair underneath (had it shaved off on Saturday after the chemo hair loss became an uncontrollable mess).
Was less expectant of having to explain the cancer all over again. Had one oke - and I mean "oke" - wiping his eyes after he innocently exlaimed "Oh, you cut your hair" and I blurted out the facts, a bit too harshly I realised and then called him over to chat more.
I am enjoying writing this blog, both for me and for other's reactions and to see the stats from where in the world people are logging into it, and obviously there are times it helps to talk about what I am feeling and experiencing (is there a difference between those two? I think so) but honestly, I cannot keep talking about when I knew, how it happened etc etc. That is why I mostly don't take calls from well-meaning people. It becomes and on-going, never-ending discussion which stops me from just getting on with things. There was a time when I had three phone calls before I even reached the office.
And just to think, tomorrow is the day more people start their work week as they work as Tuesday to Saturday shift; it might be even worse. Oh well. I am sure by the end of the week it will wear off. Oh and I don't blame people for wanting to know, but I do not wish to shock people as much as I did that guy at work today. I gotta be more gentle.
Was less expectant of having to explain the cancer all over again. Had one oke - and I mean "oke" - wiping his eyes after he innocently exlaimed "Oh, you cut your hair" and I blurted out the facts, a bit too harshly I realised and then called him over to chat more.
I am enjoying writing this blog, both for me and for other's reactions and to see the stats from where in the world people are logging into it, and obviously there are times it helps to talk about what I am feeling and experiencing (is there a difference between those two? I think so) but honestly, I cannot keep talking about when I knew, how it happened etc etc. That is why I mostly don't take calls from well-meaning people. It becomes and on-going, never-ending discussion which stops me from just getting on with things. There was a time when I had three phone calls before I even reached the office.
And just to think, tomorrow is the day more people start their work week as they work as Tuesday to Saturday shift; it might be even worse. Oh well. I am sure by the end of the week it will wear off. Oh and I don't blame people for wanting to know, but I do not wish to shock people as much as I did that guy at work today. I gotta be more gentle.
henna tattoes on a bald head
Have heard about this - instead of covering the bald head caused by chemo, have a henna tattoo painted on. One friend thinks it's gross and the truth is, I couldn't do it now anyway as have stubble on most of my head where the hair had not yet fallen out.
But what ya think?
http://empressoftheuniverse.blogspot.com/2006/11/my-new-canvas-ronis-bald-head.html
But what ya think?
http://empressoftheuniverse.blogspot.com/2006/11/my-new-canvas-ronis-bald-head.html
thought for the afternoon
"Cancer didn't teach me lessons that changed my life; my life taught me lessons that changed my cancer experience." - Shelley Lewis in 5 Lessons I Didn't Learn from Breast Cancer, published 2008
http://breastcancer.about.com/od/bookreviews/gr/five_lessons.htm
http://breastcancer.about.com/od/bookreviews/gr/five_lessons.htm
Sunday, February 22, 2009
uncertain feelings about being bald
Saw this pic of former UK Big Brother star Jade Goody, who got married today although she has only weeks to live as her cervical cancer has spread. She is bald in the pic - see URL below - and at first I felt revulsed when I saw it, so guess have a long way to go towards dealing with my own baldness caused by chemo for breast cancer.
On the other hand, gonna log off now and forget about it. And will think about other things I am busy with, like the butternut I have baked and whether I should have it for supper or keep it for work and go out, and whether I feel ok or my stomach is still cramping, and whether I should play my word games on facebook or read....
PS: Oh going out! Decision was made for me. Love going out so it will be fine.
JADE GOODY BALD:
http://www.guardian.co.uk/media/2009/feb/22/jade-goody-wedding
On the other hand, gonna log off now and forget about it. And will think about other things I am busy with, like the butternut I have baked and whether I should have it for supper or keep it for work and go out, and whether I feel ok or my stomach is still cramping, and whether I should play my word games on facebook or read....
PS: Oh going out! Decision was made for me. Love going out so it will be fine.
JADE GOODY BALD:
http://www.guardian.co.uk/media/2009/feb/22/jade-goody-wedding
still have stubble - dealing with the effects of shaving head
Checked with Carlos, my dear friend and hairdresser this morning. The reason I still have black stubble over most of my head - only the sides are bald - is because that hair has not fallen out yet. It is just shaved. But he reckons it will fall out soon. He said my hair was falling out as he started working with it. He started giving me a number 1 or whatever it is called then swopped within seconds to shaving it. Oh he said the sides are bald cos I obviously sleep on my side which rubs against the pillow.
And my friend said that when he was sweeping his dining room floor this morning, he found himself sweeping up masses of my hair.
Think I have soft-optioned the effect of shaving off my hair by not going out much today - only to the veggie shop and then was not alone. In fact, have not been out alone since my hair is gone so if don't go out tonight (which would not be alone anyway), the first time I do so will be tomorrow - to work. Oh goodness, one part of me feels all tense about it, the other part is what the fak, who cares, if anyone has a problem it's their problem, but think some people might get a fright. Oh well they will get over it, I guess.
Honestly, for me the worst part of the chemo so far is the stomach side-effects which are still not sorted and probably won't be until it's all over.
Dunno if it is worth forcing myself to go out tonight. To a restaurant. But cannot become a recluse. Oh that is unlikely, what with a dinner party and two nights of Dance Umbrella shows this week.
For more info on Dance Umbrella, see www.artslink.co.za
And my friend said that when he was sweeping his dining room floor this morning, he found himself sweeping up masses of my hair.
Think I have soft-optioned the effect of shaving off my hair by not going out much today - only to the veggie shop and then was not alone. In fact, have not been out alone since my hair is gone so if don't go out tonight (which would not be alone anyway), the first time I do so will be tomorrow - to work. Oh goodness, one part of me feels all tense about it, the other part is what the fak, who cares, if anyone has a problem it's their problem, but think some people might get a fright. Oh well they will get over it, I guess.
Honestly, for me the worst part of the chemo so far is the stomach side-effects which are still not sorted and probably won't be until it's all over.
Dunno if it is worth forcing myself to go out tonight. To a restaurant. But cannot become a recluse. Oh that is unlikely, what with a dinner party and two nights of Dance Umbrella shows this week.
For more info on Dance Umbrella, see www.artslink.co.za
Saturday, February 21, 2009
cancer and exercise
Today was the first morning all week I did not wake up feeling sick. Estatic and feeling energised, I set about doing some exercises. Well, they were stretches. Did 20 minutes and really, laughed at myself. Felt like my pre-chemo 1 hour and 25 minutes in the gym. Ok, I was not as sweaty but I felt as depleted.
That is what chemo does to you. Makes you pap (Afrikaans for weak).
Been doing lots of yoga, mostly restorative poses to help my stomach problems, my worst chemo side-effect. It is helping. Some of the exercises are really simple, such as lying on the floor with your legs, from the knee, on the couch and hold for at least 20 minutes.
More about restorative yoga:
http://www.wikihealth.com/Restorative_yoga_poses
http://www.yogajournal.com/basics/991
That is what chemo does to you. Makes you pap (Afrikaans for weak).
Been doing lots of yoga, mostly restorative poses to help my stomach problems, my worst chemo side-effect. It is helping. Some of the exercises are really simple, such as lying on the floor with your legs, from the knee, on the couch and hold for at least 20 minutes.
More about restorative yoga:
http://www.wikihealth.com/Restorative_yoga_poses
http://www.yogajournal.com/basics/991
more on the big shave
Forgot to mention: Shaving all my hair off, four days after it first started to fall out, was sore. My scalp is super sensitive which I first noticed last night when I stood outside trying to shake off the loose hair by simply running my hands through my hair, and had to stop 'cos it was so sore.
Guess it's not natural for your hair to fall out like this and that's why the scalp is sore. Now wearing a silk scarf and it's wonderfully soft so not sure if my scalp is still sore but I doubt it.
As much as it's ghastly to be bald, think I made the right move as it was inevitable and I only pre-empted it by a few days. Also, read on a forum somewhere people questioning whether whether or not it was better to cut one's hair super short before it started falling out from chemo. It definately was. My hair was short to begin with, cropped it even more and it was better as the pieces which fell out weren't too long.
Now been looking at ways to tie an African-style turban and believe it or not, found a reference on the web: http://www.kangausa.com/tie,traditionalheadwrap.htm and http://www.kangausa.com/tie,backtwistturban.htm
Think a headscarf might be even better than a hat or cap - you cannot see you are bald as it covers the whole head without exposing bald back and sides.
Guess it's not natural for your hair to fall out like this and that's why the scalp is sore. Now wearing a silk scarf and it's wonderfully soft so not sure if my scalp is still sore but I doubt it.
As much as it's ghastly to be bald, think I made the right move as it was inevitable and I only pre-empted it by a few days. Also, read on a forum somewhere people questioning whether whether or not it was better to cut one's hair super short before it started falling out from chemo. It definately was. My hair was short to begin with, cropped it even more and it was better as the pieces which fell out weren't too long.
Now been looking at ways to tie an African-style turban and believe it or not, found a reference on the web: http://www.kangausa.com/tie,traditionalheadwrap.htm and http://www.kangausa.com/tie,backtwistturban.htm
Think a headscarf might be even better than a hat or cap - you cannot see you are bald as it covers the whole head without exposing bald back and sides.
the big shave
Shaved off all my hair this morning. It was becoming truly ummanageable, falling out uncontrollably but strand by strand. Think it would have taken at least two more days to fall out, if not more, and by then I would have been swimming in hair. By the time I left home this morning, I had hair on my neck, hair on my back and....
Had scheduled an appointment with Carlos for 4pm but really thought I would probably postpone it for Monday or possibly even Tuesday. Then decided it was getting outta control so phoned him and made it earlier. Then fetched my friend Craig and we dashed off to the Standard Bank Gallery to see Johannes Phokela's exhibition before dashing back up to Athol Square and my beloved Carlos.
I grimaced as he shaved it off. But did not look too much. "Are you going to shave stripes?" asked the hairdresser next to him. "I wish," I said, "but I can't; it's all going to fall out anyway". Then Carlos washed it (my scalp really) to get the loose bits of hair off. Then he just touched it with a towel and I put my cap back on.
I think it looks revolting but I am kinda dealing with it. Bumped into David Tlale at Gallery Momo and the first thing he said to me is: "Did you cut your hair?" So ja, it is very noticeable. Monna from the gallery asked me if I was being serious when I told him I had cancer - he is not the first person to say this; I think people don't expect someone to be sick if they seem so well and are animated and so so. Dunno, cos why would someone lie/joke about having cancer?
Anyway, think it might be hard going around with without hair - even with a hat on it's obvious - but gonna find out different ways to tie scarves (wearing one now and it is super comfortable especially if it is silk, and keep echoing what Edwin Cameron said (see Thursday February 19's posting, even if it was in a different context): "Get over it!" So those of you who cannot handle it, and those who are semi or utterly avoiding me because I have cancer, or find it more difficult to deal with me than I do (the subject for another blog): "Fakking get over it!"
Had scheduled an appointment with Carlos for 4pm but really thought I would probably postpone it for Monday or possibly even Tuesday. Then decided it was getting outta control so phoned him and made it earlier. Then fetched my friend Craig and we dashed off to the Standard Bank Gallery to see Johannes Phokela's exhibition before dashing back up to Athol Square and my beloved Carlos.
I grimaced as he shaved it off. But did not look too much. "Are you going to shave stripes?" asked the hairdresser next to him. "I wish," I said, "but I can't; it's all going to fall out anyway". Then Carlos washed it (my scalp really) to get the loose bits of hair off. Then he just touched it with a towel and I put my cap back on.
I think it looks revolting but I am kinda dealing with it. Bumped into David Tlale at Gallery Momo and the first thing he said to me is: "Did you cut your hair?" So ja, it is very noticeable. Monna from the gallery asked me if I was being serious when I told him I had cancer - he is not the first person to say this; I think people don't expect someone to be sick if they seem so well and are animated and so so. Dunno, cos why would someone lie/joke about having cancer?
Anyway, think it might be hard going around with without hair - even with a hat on it's obvious - but gonna find out different ways to tie scarves (wearing one now and it is super comfortable especially if it is silk, and keep echoing what Edwin Cameron said (see Thursday February 19's posting, even if it was in a different context): "Get over it!" So those of you who cannot handle it, and those who are semi or utterly avoiding me because I have cancer, or find it more difficult to deal with me than I do (the subject for another blog): "Fakking get over it!"
Friday, February 20, 2009
not quite sure what to do
Wore a cap all day today. Taken it off and now if I just brush my hand over my hair, it is falling out. In droves but not clumps, still strand by strand. Not quite sure what to do. Stand over the basin and clog it up? Surely will clog the toilet too. The bin? Oh this is revolting. It must just go now. Sure it will almost all be gone after a bath tomorrow.
what you don't get told about chemo hair loss
Maybe it is different for everyone, but had no idea what a messy business this chemo hair loss is.
My hair is everywhere. "You need one of those canteen worker's plastic caps!" said someone. And it's true. Anyone got one for me? Even today, when I am wearing a cap for that very 'plastic cap' purpose, there is hair everywhere, even on the telephone on my desk which is an arm's length away.
Have booked an appointment with darling Carlos for 4pm tomorrow to shave it all off but might postpone it till Monday depending on how much has fallen out.
"Cos that's the other thing I did not know. How slowly it falls out. It's been falling out since Wednesday, strand by strand, making a mess. This morning still had a full head of hair but with thinning patches on each side on the top. Oh and generally it was thinner but would have been happy to walk around like that, but donned the cap - a black one - to avoid moulting over everything!!!!
My hair is everywhere. "You need one of those canteen worker's plastic caps!" said someone. And it's true. Anyone got one for me? Even today, when I am wearing a cap for that very 'plastic cap' purpose, there is hair everywhere, even on the telephone on my desk which is an arm's length away.
Have booked an appointment with darling Carlos for 4pm tomorrow to shave it all off but might postpone it till Monday depending on how much has fallen out.
"Cos that's the other thing I did not know. How slowly it falls out. It's been falling out since Wednesday, strand by strand, making a mess. This morning still had a full head of hair but with thinning patches on each side on the top. Oh and generally it was thinner but would have been happy to walk around like that, but donned the cap - a black one - to avoid moulting over everything!!!!
Thursday, February 19, 2009
the stigma, a la edwin cameron
If you ever have the chance to share a space with Edwin Cameron, grab it. A recently appointed constitutional court judge and awardwinning author (Witness to Aids, 2006 co-winner of the Sunday Times Alan Paton award for non-fiction, he was the main guest speaker of the Drama for Life 2009 launch at Wits University this evening.
And he gave me a wake-up call. Last night I was privately moaning about how humiliated I would feel walking around with no hair (hat or no hat), and then I heard Cameron speak tonight.
Tall, dignified in a black suit with sparklingly polished black shoes, thin and with the bony face of someone on anti-retrovirals, he provided the best drama of the night. Do you know anyone who had died of Aids? If so, put up your hand and let's salute them. Do you know anyone living with Aids now?" Once again almost everyone present raised their hand. "Let's salute them," he said.
Then he spoke about the biggest problem of Aids in South Africa being the stigma - the revulsion and self-hate that people feel about Aids. He spoke about how he too felt it, for years, working in human rights law and with other such lefties (he never used that word). Yet he never dared tell them of his status because of the stigma. He spoke about how he nearly died and then he went onto anti-retrovirals and for the past 11 years has been fine. He spoke about how Aids is a manageable disease once you get the dose right, more manageable than diabetes and high blood pressure which have to be constantly checked and the dose adjusted. And as he spoke I felt as if he were talking directly to me, me with the cap 'cos of the increasing yet slow hair loss who had spent the night before upset 'cos of how embarrassed I would be walking around obviously with no hair, how humiliated I would feel, how people would stare and pity me and I felt revitalised.
To use Cameron's words as he addressed the Drama for Life students from 10 African countries, saying how many of those places persecuted gays. Tell them to "get over it" he said.
Like I too must "get over it", get over this self-pitying phobia about my temporary hair loss.
http://www.sabcoha.org/bios/justice-edwin-cameron-2.html
http://www.constitutionalcourt.org.za/text/judges/current/justicecameron/1.html
http://www.witnesstoaids.com/
www.dramaforlife.co.za
And he gave me a wake-up call. Last night I was privately moaning about how humiliated I would feel walking around with no hair (hat or no hat), and then I heard Cameron speak tonight.
Tall, dignified in a black suit with sparklingly polished black shoes, thin and with the bony face of someone on anti-retrovirals, he provided the best drama of the night. Do you know anyone who had died of Aids? If so, put up your hand and let's salute them. Do you know anyone living with Aids now?" Once again almost everyone present raised their hand. "Let's salute them," he said.
Then he spoke about the biggest problem of Aids in South Africa being the stigma - the revulsion and self-hate that people feel about Aids. He spoke about how he too felt it, for years, working in human rights law and with other such lefties (he never used that word). Yet he never dared tell them of his status because of the stigma. He spoke about how he nearly died and then he went onto anti-retrovirals and for the past 11 years has been fine. He spoke about how Aids is a manageable disease once you get the dose right, more manageable than diabetes and high blood pressure which have to be constantly checked and the dose adjusted. And as he spoke I felt as if he were talking directly to me, me with the cap 'cos of the increasing yet slow hair loss who had spent the night before upset 'cos of how embarrassed I would be walking around obviously with no hair, how humiliated I would feel, how people would stare and pity me and I felt revitalised.
To use Cameron's words as he addressed the Drama for Life students from 10 African countries, saying how many of those places persecuted gays. Tell them to "get over it" he said.
Like I too must "get over it", get over this self-pitying phobia about my temporary hair loss.
http://www.sabcoha.org/bios/justice-edwin-cameron-2.html
http://www.constitutionalcourt.org.za/text/judges/current/justicecameron/1.html
http://www.witnesstoaids.com/
www.dramaforlife.co.za
the fall-out
Who ever said that your hair doesn't just fall out is wrong. These pictures - CLICK ON THEM TO MAKE THEM LARGER - were taken at work today, day two of my chemo hair loss and 15 days since my first AC chemo treatment for breast cancer.
My hair was everywhere - on my desk, on my clothes, falling into my eyes and, if I ran my fingers through my hair, in my fingers. Yet it is all taking place so slowly. Still have hair on my head and only if you look closely, can you see slight thinning patches. But the fall-out is becoming a nuisance. And obvious. Hardly the unobtrusive event I was told.
PICTURES: KATHERINE MUICK-MERE
Wednesday, February 18, 2009
body awareness
If today has proved one thing to me -ja, I know this is my fifth posting of the day - it is that I am hyper body aware. One surgeon told me that not many women would have been so astute as to feel the lump I felt below my armpit.
And I felt my hair falling out from the first strand. Now, it is just over seven hours later and I still have a full head of hair but it is falling out, just slowly, and think if I touch it, it will start falling out.
It is now becoming super itchy too which is what I was told happens before it falls out in clumps.
Hope tomorrow is not going to be too traumatic but going to handle it whatever. One thing I know for sure, no matter what happens to my hair before 9am and worktime, gonna wear a hat.
Someone just remarked that this whole blog is about losing my hair but for me that is the one things which makes it so public, that makes everybody know that I have cancer. Without that, could keep it more private.
And I felt my hair falling out from the first strand. Now, it is just over seven hours later and I still have a full head of hair but it is falling out, just slowly, and think if I touch it, it will start falling out.
It is now becoming super itchy too which is what I was told happens before it falls out in clumps.
Hope tomorrow is not going to be too traumatic but going to handle it whatever. One thing I know for sure, no matter what happens to my hair before 9am and worktime, gonna wear a hat.
Someone just remarked that this whole blog is about losing my hair but for me that is the one things which makes it so public, that makes everybody know that I have cancer. Without that, could keep it more private.
it's hairraising
Had a good laugh when leaving work, someone said: "Have a good night". "Think it's going to be hairraising - literally," I replied. lol
This is my fourth posting of the day. Often wonder if anyone reads this but what I am realising is that talking about things helps. Was on my own when realised my hair was falling out. Felt very upset. Felt vulnerable.
Now am neutral. It's fine 'cos put it on facebook and chatted to quite a few people about it. It's not a surprise and it feels ok but am conscious of the fact that have decided to forego two art exhibition openings tomorrow night to go the launch of 2009 Drama for Life at the Wits Theatre - alone. My hair will then either be going, going, going or even gone. Will be wearing one of my caps - now wanna buy more - but hopefully it will be ok. Will I need a supportive ally? Maybe. Ideally. But should/must manage.
This is my fourth posting of the day, and there might be more.
This is my fourth posting of the day. Often wonder if anyone reads this but what I am realising is that talking about things helps. Was on my own when realised my hair was falling out. Felt very upset. Felt vulnerable.
Now am neutral. It's fine 'cos put it on facebook and chatted to quite a few people about it. It's not a surprise and it feels ok but am conscious of the fact that have decided to forego two art exhibition openings tomorrow night to go the launch of 2009 Drama for Life at the Wits Theatre - alone. My hair will then either be going, going, going or even gone. Will be wearing one of my caps - now wanna buy more - but hopefully it will be ok. Will I need a supportive ally? Maybe. Ideally. But should/must manage.
This is my fourth posting of the day, and there might be more.
being a drama queen
Look, my hair is not exactly falling out in clumps. Well not yet. If i pull on it lightly, a few strands come out.
It feels spacey. As if I could wipe my hand across my head and it would all fall out. Kinda tingly.
This is my third posting today but want to document what is happening and how it feels.
It feels spacey. As if I could wipe my hand across my head and it would all fall out. Kinda tingly.
This is my third posting today but want to document what is happening and how it feels.
it is scary
My scalp feels funny but not itchy as I was told. Know one shouldn't wish for time to pass but almost wish this was over, that it was out already. Maybe not. But at work and gonna put on my cap on just now. A white one. To match my t-shirt.
it's starting
My hair is starting to fall out. Just a little but it has started. Feel really sad even though I knew it was going to happen.
Had a power failure at work and had to log off. I went home as wanted to collect a few things there anyway. Lay on my bed and watched "Cooked' on TV. Saw one hair on the white duvet cover. Then put my hands through my hair and about two strands fell out. Then a few more fell out when I ran my hands through my hair back at the office now.
It is exactly two weeks since I had my first AC chemo treatment for breast cancer.
Had a power failure at work and had to log off. I went home as wanted to collect a few things there anyway. Lay on my bed and watched "Cooked' on TV. Saw one hair on the white duvet cover. Then put my hands through my hair and about two strands fell out. Then a few more fell out when I ran my hands through my hair back at the office now.
It is exactly two weeks since I had my first AC chemo treatment for breast cancer.
Tuesday, February 17, 2009
cancer and biokinetics
Felt invigorated because went to see Dalena, my brilliant biokineticist who helped me with my knee when my kneecap went out of alignment. Was still busy with the treatment but now, being banned from gym 'cos my chemo can affect the heart, no longer able to work on that little hassle.
Anyway, Dalena gave me a lot of brilliant low-energy exercises which I now plan to do three to four times a week, even if I make only 10 minutes at a time. For example, instead of standing and bending one knee to one's back as a stretch, she advocates doing it kneeling. "Less energy," she said.
She also feels yoga will be best, as it is all about "opening up", she said, but we agreed not sure I will make a full class. Planning on going next week.
Meanwhile, still have my hair but suffering other fairly debilitating side-effects but at this moment, am fine.
Anyway, Dalena gave me a lot of brilliant low-energy exercises which I now plan to do three to four times a week, even if I make only 10 minutes at a time. For example, instead of standing and bending one knee to one's back as a stretch, she advocates doing it kneeling. "Less energy," she said.
She also feels yoga will be best, as it is all about "opening up", she said, but we agreed not sure I will make a full class. Planning on going next week.
Meanwhile, still have my hair but suffering other fairly debilitating side-effects but at this moment, am fine.
Monday, February 16, 2009
jade goody and being brave
A pic of Jade Goody, bald - the 27-year-old former British Big Brother star who has now been given just months to live after her cervical cancer was found to have spread to the bowel, liver and groin - was flashed across Sky News tonight.
Then found this online posting by a journalist from the Observer UK who asks in connection with Goody:
"I'd like to ask how people feel about the media using the words "brave" and "battling" in connection with cancer sufferers."
http://www.whatnow.org.uk/cancer-forums/jade-goody-and-talking-about-cancer-observer-newspaper
Interesting idea. What do you think? Please leave a comment.
One reader, KateG, wrote of Goody's high profile fight against cancer: "Battling" and being "Brave" - What choice is there? One undergoes whatever treatment is offered in order to stay alive or at least prolong one's life. I suppose one could say a "Brave" patient is one who undergoes lots of horrible treatment without complaint. (And we all have our 'off' days when we fall apart and are not the least bit brave!)."
I see the point.
People have told me I am being brave. Some because I have been so open about having cancer. But what choice do I have? From when I lose my hair it will all become so public. A lot of my telling people has been selfish, to make it easier for me. Am dreading people looking at me in shock and horror as I walk around so obviously as someone having chemo.
By the way, Jade Goody looked fab in the pic on TV - bald and defiant.
http://news.bbc.co.uk/2/hi/entertainment/7869090.stm
Then found this online posting by a journalist from the Observer UK who asks in connection with Goody:
"I'd like to ask how people feel about the media using the words "brave" and "battling" in connection with cancer sufferers."
http://www.whatnow.org.uk/cancer-forums/jade-goody-and-talking-about-cancer-observer-newspaper
Interesting idea. What do you think? Please leave a comment.
One reader, KateG, wrote of Goody's high profile fight against cancer: "Battling" and being "Brave" - What choice is there? One undergoes whatever treatment is offered in order to stay alive or at least prolong one's life. I suppose one could say a "Brave" patient is one who undergoes lots of horrible treatment without complaint. (And we all have our 'off' days when we fall apart and are not the least bit brave!)."
I see the point.
People have told me I am being brave. Some because I have been so open about having cancer. But what choice do I have? From when I lose my hair it will all become so public. A lot of my telling people has been selfish, to make it easier for me. Am dreading people looking at me in shock and horror as I walk around so obviously as someone having chemo.
By the way, Jade Goody looked fab in the pic on TV - bald and defiant.
http://news.bbc.co.uk/2/hi/entertainment/7869090.stm
ho hum
In the middle of my low immune week - 7 -14 days after chemo treatment. Not a good day healthwise but thanks to modern medicine, one magic pill took away the symptoms if not the yucky feeling.
Went to my new favourite food shop - Huamin Chinese sushi bar in Barry Hertzog, Emmerentia - and bought chicken and corn soup (only R10) and masses of avo maki for lunch which was wonderfully revitalising.
Gonna discard the lettuce, sprouts, veggies and most of the fruit I bought yesterday cos of my super-sensitive stomach and will stick to tasteless tofu (it's truly tasteless when cooked without spices) and other such mundane foods for the next few days.
Watching Idols on TV and it's disappointing.
Went to my new favourite food shop - Huamin Chinese sushi bar in Barry Hertzog, Emmerentia - and bought chicken and corn soup (only R10) and masses of avo maki for lunch which was wonderfully revitalising.
Gonna discard the lettuce, sprouts, veggies and most of the fruit I bought yesterday cos of my super-sensitive stomach and will stick to tasteless tofu (it's truly tasteless when cooked without spices) and other such mundane foods for the next few days.
Watching Idols on TV and it's disappointing.
Sunday, February 15, 2009
physically 'pap'
Today is a month since I phoned the doctor for the results of my biopsy report and he told me there were abnormal cells.
Ok but am physically far weaker than usual.
Did a restorative yoga programme with my yoga guru friend yesterday for an hour which was great. This morning tried basic stretches which I used to do at the end of my 1 hr 25 min gym sessions four times a week (now banned from gym cos the chemo I am on can affect the heart), and was horrified how weak I felt, ending up a slight sweat and a little out of breath at what was unlikely to have been more than 15-20 minutes of simple stretches, some done perfunctoraly (such a word exist???) as they were too difficult to do properly. Not sure if that is 'cos of not excercising much in the last month or from the poison put into me. Probably a combination of both.
Seeing my biokineticist on Tuesday just to discuss things as she is leaving the country at the end of the month, and going to make an effort to do regular yoga/stretches.
http://www.yogajournal.com/lifestyle/2793?utm_source=DailyInsight&utm_medium=newsletter&utm_content=b&utm_campaign=DI_2009-01-26
Ok but am physically far weaker than usual.
Did a restorative yoga programme with my yoga guru friend yesterday for an hour which was great. This morning tried basic stretches which I used to do at the end of my 1 hr 25 min gym sessions four times a week (now banned from gym cos the chemo I am on can affect the heart), and was horrified how weak I felt, ending up a slight sweat and a little out of breath at what was unlikely to have been more than 15-20 minutes of simple stretches, some done perfunctoraly (such a word exist???) as they were too difficult to do properly. Not sure if that is 'cos of not excercising much in the last month or from the poison put into me. Probably a combination of both.
Seeing my biokineticist on Tuesday just to discuss things as she is leaving the country at the end of the month, and going to make an effort to do regular yoga/stretches.
http://www.yogajournal.com/
Saturday, February 14, 2009
still waiting
Still waiting for my hair to fall out. Two people said it would fall out today, ie, 10 days from first chemo treatment, but not to be.
So wanted the bulk of the fall-out to happen over the weekend rather than at work but guess there is always tomorrow, Sunday.
Feel about the pending hair loss like I felt about the chemo; want it to start so I can get on with dealing with it.
So wanted the bulk of the fall-out to happen over the weekend rather than at work but guess there is always tomorrow, Sunday.
Feel about the pending hair loss like I felt about the chemo; want it to start so I can get on with dealing with it.
Friday, February 13, 2009
letting my world know
Posted a message on facebook today saying: "Gillian is waiting for her hair to fall out. Any day now, cos of the chemo. Otherwise fine. Please don't phone." Below that I added this blog address.
Three days ago I addressed a meeting at work - which is a rather formal way of saying I spoke for a few minutes to a meeting of the colleagues I sit around. I kinda barged into the meeting and asked if I could speak briefly, told them I had cancer, was going to lose my hair, had a cap in my bag in case this happened while at work, and this not did mean they were suddenly to stop being horrible to me! "Great!" replied the office joker.
"You're so brave, " said one of my colleagues today after the Facebook posting (she was also at the meeting). Look, I felt far less anxious about going to work with a hat on after I had spoken at the meeting (although it's not the whole office - we seldom have 'whole office' meetings), but hell, I am making these disclosures to make it easier for me. It is going to be hard, I think, to walk around obviously without hair and wearing some kinda headgear to cover it, and generally one then looks a bit half dead, without people around me making it worse - for eg had visions of people at work lifting up my hat and making some kinda facetious comment without realising the purpose of my new style.
Breast cancer is not a disease one can hide. Not if u have chemo and lose your hair. If I had a disease I could endure without the suffering being public, not sure I would tell everyone. Don't know. But this one is going to be public - although sometimes I feel so low energy at night that I wonder how much I will be gallivanting around town. For now, however, still planning on attending at least some of the Dance Umbrella which starts in about two weeks.
Either way, it's going to be obvious that I am "part of the C family" which is more or less how someone put it today after reading my facebook posting. So why pretend it's not happening?
For the rest, I don't have a mouth ulcer as I imagined the other night - think it was a piece of popcorn kernel in my mouth - although my mouth does feel different (someone suggested it was all the mouthwash I am using, as instructed, to avoid the ulcers......) and, thank goodness, still have all my hair. But tomorrow is day 10 since my first chemo treatment and that's the day two people have said is when it happens. The doctor said between week two and week three after the first treatment. So guess this close crop is not for long..... pity.
And generally feeling ok, apart from what was literally about two minutes in the late afternoon of dizziness and nausea. Let's hope this lasts.
Ja, don't think I am being brave - gosh, Sunday is a month since I was diagnosed with cancer so it took three days short of a month for me to declare it to my little world.
Three days ago I addressed a meeting at work - which is a rather formal way of saying I spoke for a few minutes to a meeting of the colleagues I sit around. I kinda barged into the meeting and asked if I could speak briefly, told them I had cancer, was going to lose my hair, had a cap in my bag in case this happened while at work, and this not did mean they were suddenly to stop being horrible to me! "Great!" replied the office joker.
"You're so brave, " said one of my colleagues today after the Facebook posting (she was also at the meeting). Look, I felt far less anxious about going to work with a hat on after I had spoken at the meeting (although it's not the whole office - we seldom have 'whole office' meetings), but hell, I am making these disclosures to make it easier for me. It is going to be hard, I think, to walk around obviously without hair and wearing some kinda headgear to cover it, and generally one then looks a bit half dead, without people around me making it worse - for eg had visions of people at work lifting up my hat and making some kinda facetious comment without realising the purpose of my new style.
Breast cancer is not a disease one can hide. Not if u have chemo and lose your hair. If I had a disease I could endure without the suffering being public, not sure I would tell everyone. Don't know. But this one is going to be public - although sometimes I feel so low energy at night that I wonder how much I will be gallivanting around town. For now, however, still planning on attending at least some of the Dance Umbrella which starts in about two weeks.
Either way, it's going to be obvious that I am "part of the C family" which is more or less how someone put it today after reading my facebook posting. So why pretend it's not happening?
For the rest, I don't have a mouth ulcer as I imagined the other night - think it was a piece of popcorn kernel in my mouth - although my mouth does feel different (someone suggested it was all the mouthwash I am using, as instructed, to avoid the ulcers......) and, thank goodness, still have all my hair. But tomorrow is day 10 since my first chemo treatment and that's the day two people have said is when it happens. The doctor said between week two and week three after the first treatment. So guess this close crop is not for long..... pity.
And generally feeling ok, apart from what was literally about two minutes in the late afternoon of dizziness and nausea. Let's hope this lasts.
Ja, don't think I am being brave - gosh, Sunday is a month since I was diagnosed with cancer so it took three days short of a month for me to declare it to my little world.
Thursday, February 12, 2009
what not to say when your friend has cancer
It is now nearly a month since I was diagnosed with cancer. Spent today trying to console two former colleagues who were really distraught at the news. This made me think back on all the things people have said and done when they heard I had cancer. So this is my list of dos and donts of what to do when your friend/colleague/whoever tells you they have cancer (when I think about it, never known anyone really close who has had cancer, so never been in that situation myself and therefore you are all forgiven for the gaffes):
DO NOT SAY/DO:
1. "Oh, that is really serious"
2. "Are you joking?
3. "Oh, I would hate if if I lost my hair"
4. "You must understand it will get worse"
5. Put on your voice reserved for the recently bereaved and slowering your usual animated pace by about 100, say : "Oh, so sorry I have not phoned earlier. I am soooooo .. blah ... blah... blah"
6. Phone incessantly
7. Stop speaking to that person
HOWEVER, DO SAY/DO:
1. Send frequent text messages saying the person does not need to respond
2. Make a point of staying in contact
3. Spoil that person
4. Stay friends with that person, in fact, be even friendler than usual
5. Listen
DO NOT SAY/DO:
1. "Oh, that is really serious"
2. "Are you joking?
3. "Oh, I would hate if if I lost my hair"
4. "You must understand it will get worse"
5. Put on your voice reserved for the recently bereaved and slowering your usual animated pace by about 100, say : "Oh, so sorry I have not phoned earlier. I am soooooo .. blah ... blah... blah"
6. Phone incessantly
7. Stop speaking to that person
HOWEVER, DO SAY/DO:
1. Send frequent text messages saying the person does not need to respond
2. Make a point of staying in contact
3. Spoil that person
4. Stay friends with that person, in fact, be even friendler than usual
5. Listen
Wednesday, February 11, 2009
one week later
It's one week after my first chemo treatment and I am miserable. Feel frustrated, hemmed in, restricted by lesser energy than usual.
Tuesday, February 10, 2009
is this a mouth ulcer i am feeling?
Moment of panic. It's day six since I had my first chemo treatment and I can feel the beginning of a mouth ulcer on the bottom right hand side of my mouth. That means my immune system is wearing down. And if it stays low, then they cannot do chemo - well, it gets delayed, and my getting better is delayed.
This mouth ulcer also means I cannot go out, cannot be among too many people and basically cannot go to Red Chamber for supper tonight, which I was scheming in my head. Cannot go out for a week. Maybe even longer. Dammit dammit dammit. No wonder I craved biltong this afternoon (actually ventured down to the dreaded canteen to get some, beef too, nogal, which I have not eaten for yonks, years probably.....).
Ag, maybe I am imagining the ulcer.
But just in case, I dash out the office within minutes, buy (only mild peri-peri, in case it burns my now dreadfully imagined diseased mouth) liver and giblets, and immediately upon arriving home, put on the stove to steam butternut and then sit down with my iron-rich meats accompanied by boiled beetroot and the butternut. A virtuous meal to prevent my immune system from conking in further. The plate of food looks so idyllic it's almost a joke with its bright orange and deep red veggies and brown healthy meats. Find it difficult to stomach the rich liver and giblets but store them in a tupperware. Maybe I'll stomach them tomorrow, I think, as I lie down on the couch, dressed too warmly (I suspect) for the slightly dropping temperature.
Oh gosh, my feet are bare. Pass a blanket please. And is that a sneeze I am hearing in the distance? Are you ill and in my company? Out damned spot, out!!!!!!
Monday, February 9, 2009
the chemo taste
It's more than just a taste; it's a feeling, this dreadful taste that comes with chemo. First you get it when you're being pumped with the poisons, then it comes after eating. My special friend licked my tongue when I was moaning about it, and said he could taste its distinctive metallic taste but not sure if he was serious or not.
It's not bitter like aloes and also not the worst taste I have tasted, but I cannot work out whether the taste makes me nauseous or whether I feel nauseous when I experience it. But I do know that it comes after eating. So either I must not eat, or I must not stop!
So far the only remedy I have found is sweets - my favourites, Sparkles, or else the tiny Manhattan wine gum-type of sweets but even getting sick of them. Any one with ideas of how to stop the taste? Now my best part of the day is when I have woken up. 'Cos pre-breakfast, there is no taste.
Which reminds me: my eating has changed since the chemo. Used to eat fish, often three times a day. Now walk past my used-to-be-favourite-shop, the Dunkeld West fish shop, without going in. Now I eat carbs - pasta, rice and so on. Lost weight only three days on from my first chemo session but have been over-eating since the start of the weekend. Spoke to a doctor this morning who said carbs are easily absorbed and so help prevent nausea and they also bypass the liver (in digestion, I presume) and so also help. Just know that have eaten fish only twice (kippers and chopped herring) and then not fresh, cooked fish, which used to be my favourite, and not a single picked cucumber, another previous favourite, despite one website telling me that gherkin in great for nausea.
Luckily still like fruit, even if veggies are not a hottie right now (except for beetroot which is a high carb veg anyway) and I have taken to nibbling granola.
It's not bitter like aloes and also not the worst taste I have tasted, but I cannot work out whether the taste makes me nauseous or whether I feel nauseous when I experience it. But I do know that it comes after eating. So either I must not eat, or I must not stop!
So far the only remedy I have found is sweets - my favourites, Sparkles, or else the tiny Manhattan wine gum-type of sweets but even getting sick of them. Any one with ideas of how to stop the taste? Now my best part of the day is when I have woken up. 'Cos pre-breakfast, there is no taste.
Which reminds me: my eating has changed since the chemo. Used to eat fish, often three times a day. Now walk past my used-to-be-favourite-shop, the Dunkeld West fish shop, without going in. Now I eat carbs - pasta, rice and so on. Lost weight only three days on from my first chemo session but have been over-eating since the start of the weekend. Spoke to a doctor this morning who said carbs are easily absorbed and so help prevent nausea and they also bypass the liver (in digestion, I presume) and so also help. Just know that have eaten fish only twice (kippers and chopped herring) and then not fresh, cooked fish, which used to be my favourite, and not a single picked cucumber, another previous favourite, despite one website telling me that gherkin in great for nausea.
Luckily still like fruit, even if veggies are not a hottie right now (except for beetroot which is a high carb veg anyway) and I have taken to nibbling granola.
Sunday, February 8, 2009
out for supper
Went out for supper tonight - a shared pizza and pasta at Lapa Flo in Emmerentia. So happy to have been out, to have felt well enough to go out even if did not hang around long in the restaurant.
Funny how little things have changed. Was such a drama queen. Would never have tolerated the mouth wash I now have to use three times a day (to prevent mouth ulcers) 'cos its taste is not ideal; now I conscientiously get up after eating to use it. And I used to walk into blood tests with a dramatic "whatever you do, you are not going to do it in my hand 'cos it hurts for three days afterwards". Lol. I have now had two drips and one injection in my hands in the past week - and survived.
Like my new cropped hair look. Pity it can't stay like that and has to fall out.... but so be it.
Funny how little things have changed. Was such a drama queen. Would never have tolerated the mouth wash I now have to use three times a day (to prevent mouth ulcers) 'cos its taste is not ideal; now I conscientiously get up after eating to use it. And I used to walk into blood tests with a dramatic "whatever you do, you are not going to do it in my hand 'cos it hurts for three days afterwards". Lol. I have now had two drips and one injection in my hands in the past week - and survived.
Like my new cropped hair look. Pity it can't stay like that and has to fall out.... but so be it.
Friday, February 6, 2009
back at work after chemo
Went back to work today after two days off 'cos of the chemo. Wasn't great. Felt pretty nauseous and had to pop an extra pill at midday and then left early-ish but did do some work.
Was a bit amazed - horrified really - how not up to usual energy levels. One doctor had lent me a book on surviving breast cancer. Great book and my sister had it photostated today (ja, ja, I know, copyright and all that but it is not available here). The doctor needed it back but the idea of popping into my car and dashing off to collect it and then rushing off to the doctor's rooms was far more than I could cope with. Hope it's just a temporary energy loss.
Came home and slept for close to three hours. Passed out really. Yesterday slept for just over three. Also kinda passed out. Presume it's a side-effect of the strong anti-nausea pill I am required to take in the mornings. Tomorrow is the last one for this cycle so will see if it happens again.
Not so lekker being alone at home tonight. But not too bad. Just cannot go to sleep again now in case I cannot sleep later.
Was a bit amazed - horrified really - how not up to usual energy levels. One doctor had lent me a book on surviving breast cancer. Great book and my sister had it photostated today (ja, ja, I know, copyright and all that but it is not available here). The doctor needed it back but the idea of popping into my car and dashing off to collect it and then rushing off to the doctor's rooms was far more than I could cope with. Hope it's just a temporary energy loss.
Came home and slept for close to three hours. Passed out really. Yesterday slept for just over three. Also kinda passed out. Presume it's a side-effect of the strong anti-nausea pill I am required to take in the mornings. Tomorrow is the last one for this cycle so will see if it happens again.
Not so lekker being alone at home tonight. But not too bad. Just cannot go to sleep again now in case I cannot sleep later.
Thursday, February 5, 2009
preparing for the fallout
I bought 10 hats on Saturday, and a wig and another hat on Wednesday. And this coming Saturday I am cropping my hair even shorter than it is now.
This is all part of being prepared because next week, from about Thursday, my hair is going to start falling out. All of it.
Think it will take about three days and then I will be bald. That's what happens when you have the red devil chemo I started this week, the first stage of my breast cancer treatment.
My hair will grow back but sitting here on my bed, feeling slighly nauseous and slightly yuch, I wonder when my feeling of well-being and health will come back. Reckon that's gone for quite a while. I hate being sick yet this is just the beginning of a long slog.
It all started on the day before Christmas, or perhaps October 27 last year when I had a routine mammogram and scan and it was all clear. Never gave it a second thought until that morning in the shower when I felt a distinct lump under my left armpit. Made an appointment with my GP that same day (wasn't sure if that part of my body counted as breast or not so decided to start there) but by the time I finished there, it was 4.45pm on Christmas Eve and not a doctor around to perform a scan. Then not a doctor around to do so for about another three weeks. Stopped panicking and decided against flying to another city as realised there wouldn't be a working doctor or surgeon there either.
Had a local anaesthetic biopsy on Tuesday January 13 and on Thursday at lunchtime phoned the doctor for my results. He told me over the phone it was abnormal cells. And that was the start of a rollercoaster ride - oh what a cliche - but really, the most topsy turvy three weeks of differing diagnosis and differing course of treatments until they converged and I started chemo this week. I have breast cancer which has spread to the lymph but cannot be seen in the breast, not even under an MRI scan. The rest of my body seems ok (been tested and tested and tested).
And if I read one more thing about how one must drink green tea to prevent cancer - it's my drink of choice every morning - and exercise to stay healthy - I was going to gym four times a week for over an hour a time - I will scream.
Yes, I am angry and yes, I am upset. But I need to calm down and continue to deal with this shit and this blog is gonna be one way of doing that.
This is all part of being prepared because next week, from about Thursday, my hair is going to start falling out. All of it.
Think it will take about three days and then I will be bald. That's what happens when you have the red devil chemo I started this week, the first stage of my breast cancer treatment.
My hair will grow back but sitting here on my bed, feeling slighly nauseous and slightly yuch, I wonder when my feeling of well-being and health will come back. Reckon that's gone for quite a while. I hate being sick yet this is just the beginning of a long slog.
It all started on the day before Christmas, or perhaps October 27 last year when I had a routine mammogram and scan and it was all clear. Never gave it a second thought until that morning in the shower when I felt a distinct lump under my left armpit. Made an appointment with my GP that same day (wasn't sure if that part of my body counted as breast or not so decided to start there) but by the time I finished there, it was 4.45pm on Christmas Eve and not a doctor around to perform a scan. Then not a doctor around to do so for about another three weeks. Stopped panicking and decided against flying to another city as realised there wouldn't be a working doctor or surgeon there either.
Had a local anaesthetic biopsy on Tuesday January 13 and on Thursday at lunchtime phoned the doctor for my results. He told me over the phone it was abnormal cells. And that was the start of a rollercoaster ride - oh what a cliche - but really, the most topsy turvy three weeks of differing diagnosis and differing course of treatments until they converged and I started chemo this week. I have breast cancer which has spread to the lymph but cannot be seen in the breast, not even under an MRI scan. The rest of my body seems ok (been tested and tested and tested).
And if I read one more thing about how one must drink green tea to prevent cancer - it's my drink of choice every morning - and exercise to stay healthy - I was going to gym four times a week for over an hour a time - I will scream.
Yes, I am angry and yes, I am upset. But I need to calm down and continue to deal with this shit and this blog is gonna be one way of doing that.
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