What a relief to be going away and it's not a family tragedy or I need to have a bloodtest to check my white and red cells and platelet levels to ensure my immune system is strong enough to fly, be among lots of people and be away from my doctor.
So really looking forward to my gastronomic experiences in Cape Town. Not going to take my laptop.
But just to say, my friend Margaret is meeting me at the airport and we are going to La Colombe in Constantia .La Colombe's menu for lunch, recently voted in the top 100 restaurants in the world. 38th to be precise.S. Pellegrino's 2009 Top 100 Restaurants in the World
Then off to Cape Grace hotel in the evening - it's at the Victoria and Albert Waterfront - for dinner at Signal restaurant. Signal's menu.
Sunday is open to impromptu choices - possibly breakfast and lunch out - but it will be a family friendly venue at least for lunch to include my sister's two kids who are comfortable in posh places but might not enjoy them so much.
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.
Friday, May 29, 2009
Thursday, May 28, 2009
a revelation
Was chatting to my friend Carlos (ok, on my cellphone in the Hyde Park carpark, returning from Zubeida Jaffer's booklaunch read her website)and read her entry in South Africa's WhosWho and extract from Zubeida Jaffer's new book Love in the Time of Treason when I said, in my usual irritating, self deprecating way "Oh, I'm such a misery" when I stopped - suddenly - and said: "Hey, I'm not. I'm not a misery, at all!"
I always thought I was, you know. But now, now that I have/have had cancer/having treatment for cancer (it went away with the chemo but now on preventative radiation for breast cancer), I realise I am not one bit of a misery. Oh, not quite as 'wow' in my attitude as some people have made out, and yes, I do get bogged down at times when yet another niggly side-effect rears its head, or too many side-effects congregate at one time, but I do not feel as if I walk around with the world's problems on my shoulders. I don't feel miserable. As much as I dislike waking up early to drive in Joburg's bumper to bumper traffic to get to radiation - and which also means trying to get to bed earlier, an even more difficult discipline - when I turn on Classic FM Classic FM's website and hear some great music or listen to a wonderful story on a CD from the Listeners' Library, I find myself smiling with sheer pleasure. Don't think I am in danger of being a depressive.
I always thought I was, you know. But now, now that I have/have had cancer/having treatment for cancer (it went away with the chemo but now on preventative radiation for breast cancer), I realise I am not one bit of a misery. Oh, not quite as 'wow' in my attitude as some people have made out, and yes, I do get bogged down at times when yet another niggly side-effect rears its head, or too many side-effects congregate at one time, but I do not feel as if I walk around with the world's problems on my shoulders. I don't feel miserable. As much as I dislike waking up early to drive in Joburg's bumper to bumper traffic to get to radiation - and which also means trying to get to bed earlier, an even more difficult discipline - when I turn on Classic FM Classic FM's website and hear some great music or listen to a wonderful story on a CD from the Listeners' Library, I find myself smiling with sheer pleasure. Don't think I am in danger of being a depressive.
Tuesday, May 26, 2009
cooking whitebait
pic from wikipediatakenfromwikipedia
Cooked whitebait tonight and fakked it up. It's now in the outside bin (it stinks). Instead of being crispy, it was soggy. Think I fried too much of it at one go.
This is the recipe I used:whitebait recipe
Oh, should mention: did not pre-soak in milk but read quite a few recipes and they did not require that, and did not deep fry.
This is dictionary.com's definition of whitebait but don't agree - eat sprats and whitebait are thinner and smaller.
white⋅bait
/ˈʰwaɪtˌbeɪt, ˈwaɪt-/ Show Spelled Pronunciation [hwahyt-beyt, wahyt-] Show IPA
–noun, plural -bait.
1. a young sprat or herring.
2. Cookery. any small, delicate fish cooked whole without being cleaned, esp. the sprat.
Origin:
1750–60; white + bait, so called from use as bait
what i don't like about having/had cancer
What I don't like about having/had cancer is the constant array of side-effects, no matter how minor. "Oh did u get nauseous?", "Oh, but your hats look nice on you" people say as if the only things u feel,the only drawbacks are the nausea and the hairloss. Bullshit. Well for me that's bullshit, those were the minor-ish things.
Right now - and think I am six weeks post chemo, week two of radiation and my cancer (the two cancerous lymph nodes to the left of my left breast) has disappeared - and I feel the following:
1) a sore throat - could be throat thrush, could be panicky shallow breathing, could be a sore throat caused by the radiation. Seeing the dr tomorrow and will find out;
2) the beginnings of a mouth ulcer
3) somewhat sore hands and lower arms where the chemo burnt my veins;
4) - oh well, that's it.
And that's enough too. A little tired too but not too much. In fact, agitated cos have to be there (radiation) early tomorrow (I changed my 4pm appointment to give me more time for work) and the time's flying and I still want to read.
So guess I'm ok.
Oh and I am very fat. Getting fatter by the second. So bought cake for one last binge. Apple strudel and petit four.
PS: 10 MINUTES LATER: NOW FEELS LIKE HAVE ULCERS IN MOUTH, WELL BUMPS. SO GUESS IT'S THRUSH AND YELLOW EMULSION HERE I COME ... LIKE HELL, WILL START TOMORROW
Right now - and think I am six weeks post chemo, week two of radiation and my cancer (the two cancerous lymph nodes to the left of my left breast) has disappeared - and I feel the following:
1) a sore throat - could be throat thrush, could be panicky shallow breathing, could be a sore throat caused by the radiation. Seeing the dr tomorrow and will find out;
2) the beginnings of a mouth ulcer
3) somewhat sore hands and lower arms where the chemo burnt my veins;
4) - oh well, that's it.
And that's enough too. A little tired too but not too much. In fact, agitated cos have to be there (radiation) early tomorrow (I changed my 4pm appointment to give me more time for work) and the time's flying and I still want to read.
So guess I'm ok.
Oh and I am very fat. Getting fatter by the second. So bought cake for one last binge. Apple strudel and petit four.
PS: 10 MINUTES LATER: NOW FEELS LIKE HAVE ULCERS IN MOUTH, WELL BUMPS. SO GUESS IT'S THRUSH AND YELLOW EMULSION HERE I COME ... LIKE HELL, WILL START TOMORROW
had a nerve-wracking moment
Had to go to gym today. The same gym I used to bounce into four times a week, do my hour and 25 minutes workout, shower and then leave. Will sometimes shower (saturday and sunday mornings) and sometimes not (Mondays and the other weekday). And if I was in a hurry to go somewhere, did less, say 45 minutes or whatever.
Anyway, once I chose my oncologist, he banned me from the gym, even before I started treatment. I distinctly remember roaming around Hyde Park one evening and bumped into my friend Eugenie and explaining that I was on my way to Pick n Pay supermarket to buy one item, just one item (doubt I actually walked out with only one though), because quite frankly I was at a dead loss as to what to do with myself. Early evening was my gym time - and now what was I to do?
Once I started treatment, my nice euphemism for chemo, don't think I missed gym, dunno. But do remember I felt quite sad when I drove passed it the first time. Had a panging, a longing.... it was the place where I .. what's that cliched term? It was "me time". Oh not that I have kids or anything like that, but it was the one time I did not have to think but could just focus on what I was doing physically. And think about my breathing. And just feel good about life.
Then today went back. Thought about what I wore today very carefully cos today was the day I was going to the gym. Wore a pink cap with a butterfly on the side. Think I detest if if I think about it. Dunno.
Sat coyly on the seat and waited for my appointment with the biokineticist and felt like crying. SMS-ed The Empathetic One and he said: "it must be the violin" and I instantly felt better. Smiled. It was ok.
But later I thought: why did I feel so sad? And I think it's cos sitting there, with my hat, in my clothes, so different to the way I used to bounce in, and it was ultimately a harsh reminder of how things used to be, before I was diagnosed with cancer.
Anyway, once I chose my oncologist, he banned me from the gym, even before I started treatment. I distinctly remember roaming around Hyde Park one evening and bumped into my friend Eugenie and explaining that I was on my way to Pick n Pay supermarket to buy one item, just one item (doubt I actually walked out with only one though), because quite frankly I was at a dead loss as to what to do with myself. Early evening was my gym time - and now what was I to do?
Once I started treatment, my nice euphemism for chemo, don't think I missed gym, dunno. But do remember I felt quite sad when I drove passed it the first time. Had a panging, a longing.... it was the place where I .. what's that cliched term? It was "me time". Oh not that I have kids or anything like that, but it was the one time I did not have to think but could just focus on what I was doing physically. And think about my breathing. And just feel good about life.
Then today went back. Thought about what I wore today very carefully cos today was the day I was going to the gym. Wore a pink cap with a butterfly on the side. Think I detest if if I think about it. Dunno.
Sat coyly on the seat and waited for my appointment with the biokineticist and felt like crying. SMS-ed The Empathetic One and he said: "it must be the violin" and I instantly felt better. Smiled. It was ok.
But later I thought: why did I feel so sad? And I think it's cos sitting there, with my hat, in my clothes, so different to the way I used to bounce in, and it was ultimately a harsh reminder of how things used to be, before I was diagnosed with cancer.
Monday, May 25, 2009
fashion launch
went to this fashion launch the other night. Stiaan Louw. check out stiaan louw here Did not know a bloody soul. Walked around aimlessly. Could not drink the drink on offer as it came as a vitamin-enriched concoction of water and on radiation, not allowed vitamins. As I do not take any ever, almost forgot about the rule....
There were about 6 models who stood on plinths. That was it.
"You can look around and see what u wnt to buy," said the organiser when I went up to him, desperate to chat to somebody. "The models too?" I enquired. "The models too!" he said with a grin.
As I left, walked into two people I knew. The next day the one, Gary, told me he had bought R5000 worth of the clothes, including the grey trenchcoat I had admired most. In fact, he was wearing it.
kak templates
this blogspot has shit templates. back to the old one, as u can see, but keen for new horizons
writing this blog
Getting despondent writing this blog as nobody comments. Lost my Croatian readers but gained the equivalent in India.
Think am going to read tonight.
Think am going to read tonight.
Sunday, May 24, 2009
chemo hairgrowth
Doing a little googling re chemo hairgrowth but still unsure how long it's gonna take.
This video is more intriguing than helpful, and intrigued that it ends by saying she is proud to be a cancer survivor.
you tube video
Also read somewhere it grows 1/4 inch per month but guess like everything else re cancer, there are not hard and fast rules, and it depends....
This video is more intriguing than helpful, and intrigued that it ends by saying she is proud to be a cancer survivor.
you tube video
Also read somewhere it grows 1/4 inch per month but guess like everything else re cancer, there are not hard and fast rules, and it depends....
highlight of every day
The highlight of every day and the thing that makes it impossible for me to get depressed or feel miserable is wipping off the little cotton cap I sleep in and staring at my head. Watching my hair grow back is just too wonderful. Not sure of the rate it will grow back - maybe someone can tell me? - but reckon it will take a few more months before I can discard my hats and play with my hair.
a new look
Not sure how long I am going to keep this new template, or even if I like it, but have opted for a change.
Went to movies tonight, the new star trek movie and even though it was a compromise choice to suit a friend rather than me, really enjoyed it. Thought it was well directed and acted and enjoyed the script. Sharp movie.
Have not been to movies for ages, as in months, so a lovely change.
Otherwise well. Looking forward to going to Cape Town next weekend to see my dad. How great to be allowed to travel.
Then have an appointment at the gym on Tuesday where they will assess me re an exercise schedule. All I can see is that think I can do very little. Today did 30 minutes of exercise this morning. Amazing!! Cos just a bit of yoga and some stretches and my knee and legs are no longer stiff and sore.
Later today walked up many flights of friends to view a flat with a friend - and boy, the old lady agent on the top said : "Think you (referring to both of us) need to go to gym!"
I was not too embarrassed, hell, have just come out of chemo but really, that decides it: not going to go back to yoga this week. A 90 minute class is outta my reach at the moment. After 30 minutes this morning was a little out of breath... but it felt just the right amount of exercise for now.
Went to movies tonight, the new star trek movie and even though it was a compromise choice to suit a friend rather than me, really enjoyed it. Thought it was well directed and acted and enjoyed the script. Sharp movie.
Have not been to movies for ages, as in months, so a lovely change.
Otherwise well. Looking forward to going to Cape Town next weekend to see my dad. How great to be allowed to travel.
Then have an appointment at the gym on Tuesday where they will assess me re an exercise schedule. All I can see is that think I can do very little. Today did 30 minutes of exercise this morning. Amazing!! Cos just a bit of yoga and some stretches and my knee and legs are no longer stiff and sore.
Later today walked up many flights of friends to view a flat with a friend - and boy, the old lady agent on the top said : "Think you (referring to both of us) need to go to gym!"
I was not too embarrassed, hell, have just come out of chemo but really, that decides it: not going to go back to yoga this week. A 90 minute class is outta my reach at the moment. After 30 minutes this morning was a little out of breath... but it felt just the right amount of exercise for now.
Thursday, May 21, 2009
"you are being watched"
Found out today that while the "whatevers/radiologists?" leave the room during my radiation, they are watching it - and me - on a monitor. Makes sense - as they have to check it is targeting the right area.
Then, when they come tippy-toeing in to reposition me for the next bout, they dim the lights so that the beams are clearer.
Maybe tomorrow will pluck up the courage to ask what their job titles are. Easier to ask the doctor next week I guess, and less obtrusive.
The radiation is almost a non-experience for now. Walk in, take your top off, lie down and they make marks with some kind of pen where there is already four tiny tattoo - yea, permanent tattoos - and then position me. That can take a few minutes. Then they leave, a buzzing starts and then don't know too much more as I generally keep my eyes shut. Then they run in out about three times, the machine moves around me. Then it's over and I leave and go to the office. 8.4am tomorrow so need to go to sleep soonish. Trouble is: not tired.
Then, when they come tippy-toeing in to reposition me for the next bout, they dim the lights so that the beams are clearer.
Maybe tomorrow will pluck up the courage to ask what their job titles are. Easier to ask the doctor next week I guess, and less obtrusive.
The radiation is almost a non-experience for now. Walk in, take your top off, lie down and they make marks with some kind of pen where there is already four tiny tattoo - yea, permanent tattoos - and then position me. That can take a few minutes. Then they leave, a buzzing starts and then don't know too much more as I generally keep my eyes shut. Then they run in out about three times, the machine moves around me. Then it's over and I leave and go to the office. 8.4am tomorrow so need to go to sleep soonish. Trouble is: not tired.
Wednesday, May 20, 2009
desperately seeking tranquility
had planned this whole piece about how i want one, no, not one, about three tranquil days - maybe even a week - at the risk of getting bored, ending up saying how the truth is probably finding the tranquility within myself.
But now too damn tired to elucidate all that, and all cos i worked quite latish to make up for coming in late cos of radiation. Plus saw the doctor and no, nothing wrong with my chest - was breathing shallowly cos i am panicking is the only possibility. Did cough quite frantically just now again.
Good news is that can go back to gym. Let's rephrase that: must go back to gym but cannot get too sweaty or out of breath. So going to get biokineticist at the gym (my former brilliant biokineticist Dalena is off to live in Namibia). Booked an assessment for Tuesday. Said I want a brilliant highly-experienced bio. Scared if do it on my own will under-perform rather than over-perform, cos have this desperate need to protect myself. Everything makes me anxious. Even the thought of exerise as The Tango Man was adamant about no gym but no the chemo is over and it's radiation time. Actually very excited about going back to gym. Going to be quite emotional but happy emotional. The first time I drove passed the gym, after I had been banned from going, I felt quite tearful. Even now, can barely bring myself to look at the building cos was so happy going there. Now going to be happy going there again. Gonna be kinda awkward though: gymming in a hat, like the frummes (religious Jews).
But now too damn tired to elucidate all that, and all cos i worked quite latish to make up for coming in late cos of radiation. Plus saw the doctor and no, nothing wrong with my chest - was breathing shallowly cos i am panicking is the only possibility. Did cough quite frantically just now again.
Good news is that can go back to gym. Let's rephrase that: must go back to gym but cannot get too sweaty or out of breath. So going to get biokineticist at the gym (my former brilliant biokineticist Dalena is off to live in Namibia). Booked an assessment for Tuesday. Said I want a brilliant highly-experienced bio. Scared if do it on my own will under-perform rather than over-perform, cos have this desperate need to protect myself. Everything makes me anxious. Even the thought of exerise as The Tango Man was adamant about no gym but no the chemo is over and it's radiation time. Actually very excited about going back to gym. Going to be quite emotional but happy emotional. The first time I drove passed the gym, after I had been banned from going, I felt quite tearful. Even now, can barely bring myself to look at the building cos was so happy going there. Now going to be happy going there again. Gonna be kinda awkward though: gymming in a hat, like the frummes (religious Jews).
Tuesday, May 19, 2009
day 2 of radiation
Getting a little anxious. Yesterday went for radiation at 4pm. By the evening had a shit taste in my mouth. This morning it was still there and I was starting to feel slightly nauseous. Told them - must find out what 'they' are professionally - and they said only get that from brain cancer radiation. But, said the one lady, I am the patient so if I have it the taste, then it's there. Ja well. Getting used to be told what I am feeling/experiencing is most unusual or cannot be a symptom and must be something else unrelated.... ja well.
Then this afternoon in the meeting at work could feel my chest closing and started coughing. Twice I left the meeting, first to get throat lozenges (I am a walking medicine chest these days), then to get water so I could stop coughing.
I have stopped coughing now but my chest is tight. Put it this way, if I was still allowed to go to gym, would never go to gym feeling like this. It is subtle but there.
And I was told - no side effects till after week three. Humph!
This is a bit scary. Twenty three sessions to go but will speak to them about it tomorrow.
Cooked fish curry tonight. Kinglip in an easy recipe I found on BBC Food fish curry recipe. Just added garlic and fresh chilli, curry leaves, a little fish sauce and could not find madras curry paste so used thai green. Will make it again although my version was a little watery. But enjoying my new found interest in cooking. It was Marianne's suggestion, my colleague who got injured twice recently, once mountaineering and once, just got injured - her knee gave in completely. She suggested cooking when one's energy is not up to going out a lot. So now indulging. While I can, before I get exhausted like the doctors, nurses and Internet sites threaten happens with radiation. And for now, only planning one night out during the week.
By the way, great to have my taste/desire for fish back.
Then this afternoon in the meeting at work could feel my chest closing and started coughing. Twice I left the meeting, first to get throat lozenges (I am a walking medicine chest these days), then to get water so I could stop coughing.
I have stopped coughing now but my chest is tight. Put it this way, if I was still allowed to go to gym, would never go to gym feeling like this. It is subtle but there.
And I was told - no side effects till after week three. Humph!
This is a bit scary. Twenty three sessions to go but will speak to them about it tomorrow.
Cooked fish curry tonight. Kinglip in an easy recipe I found on BBC Food fish curry recipe. Just added garlic and fresh chilli, curry leaves, a little fish sauce and could not find madras curry paste so used thai green. Will make it again although my version was a little watery. But enjoying my new found interest in cooking. It was Marianne's suggestion, my colleague who got injured twice recently, once mountaineering and once, just got injured - her knee gave in completely. She suggested cooking when one's energy is not up to going out a lot. So now indulging. While I can, before I get exhausted like the doctors, nurses and Internet sites threaten happens with radiation. And for now, only planning one night out during the week.
By the way, great to have my taste/desire for fish back.
Monday, May 18, 2009
what a day
Was apprehensive about today cos it was my first radiotherapy treatment but it was eclipsed by a call from my sister saying she was booking my dad into hospital. Thank God he is ok - just bronchitus - but my goodness, he had had an ECG and had fallen this morning as he was so dizzy.
He is going to be in hospital for about two days but luckily he is ok. My sister says he is in the bed right next to the one where my mom died just two months ago.
Apparently my dad is kinda enjoying himself, craking jokes and interacting with all. When I spoke to him this afternoon he sounded well, and his spirits were certainly high but that was before he saw the doctor so I was still anxious. Now he is fine. The doctor said he doesn't look his age - a remarkable 87 - and is very strong. What an amazing man.
Anyway radiation was ok. They said I need to wear cotton sports bras so glad I had already bought five and gonna buy about two more but said i don't need to wear loose cotton tops all the time (had bought five of those as well). That's fine cos did not plan on wearing on to the book awards launch party anyway....
Chest feels sore but then i often have pain there.
Bumped into Erica, the head oncology nurse, at the centre and she said radiation has an accumulative effect, unlike chemo, and you get bone tired.
Have also changed the times of my appointments so will only be going at 4pm again towards the end of the treatments.
And the actual treatment? Hard to tell as they also gave me x-rays to check the positioning of the beams and just when I tried to close my eyes and practise some visualisation, they would come running in (two of them) and I would hear these heels coming in and out. Apparently they have to check the positioning and I have five different beams/places where the radiation is going. Will ask more when I see the doctor again which is next week apparently.
But the actual radiation is quick. They (the two "whatevers" in the heels) said they don't work in time, they work in dose, and that i will get the same dose every time but as the electricity current might be different, might not be the same duration each time but it's about five minutes (think that's what they said).
Anyway, next dose is tomorrow at 9.15pm. Do have a funny feeling, sorry, taste, in my mouth but not sure what that is from.
Oh and major relief that handed interview in.
He is going to be in hospital for about two days but luckily he is ok. My sister says he is in the bed right next to the one where my mom died just two months ago.
Apparently my dad is kinda enjoying himself, craking jokes and interacting with all. When I spoke to him this afternoon he sounded well, and his spirits were certainly high but that was before he saw the doctor so I was still anxious. Now he is fine. The doctor said he doesn't look his age - a remarkable 87 - and is very strong. What an amazing man.
Anyway radiation was ok. They said I need to wear cotton sports bras so glad I had already bought five and gonna buy about two more but said i don't need to wear loose cotton tops all the time (had bought five of those as well). That's fine cos did not plan on wearing on to the book awards launch party anyway....
Chest feels sore but then i often have pain there.
Bumped into Erica, the head oncology nurse, at the centre and she said radiation has an accumulative effect, unlike chemo, and you get bone tired.
Have also changed the times of my appointments so will only be going at 4pm again towards the end of the treatments.
And the actual treatment? Hard to tell as they also gave me x-rays to check the positioning of the beams and just when I tried to close my eyes and practise some visualisation, they would come running in (two of them) and I would hear these heels coming in and out. Apparently they have to check the positioning and I have five different beams/places where the radiation is going. Will ask more when I see the doctor again which is next week apparently.
But the actual radiation is quick. They (the two "whatevers" in the heels) said they don't work in time, they work in dose, and that i will get the same dose every time but as the electricity current might be different, might not be the same duration each time but it's about five minutes (think that's what they said).
Anyway, next dose is tomorrow at 9.15pm. Do have a funny feeling, sorry, taste, in my mouth but not sure what that is from.
Oh and major relief that handed interview in.
Sunday, May 17, 2009
feeling the chemo leave my body
Tomorrow is six weeks since my last chemo session. And hopefully my last ever ever as it worked and the cancer is gone, gone, gone and from now on, so c, it's just preventative treatment so that it stays away forever and ever.
And what is amazing and making me feel so bouyant at this moment is that I can really feel my body come back to normal. It's hard to clarify but I feel more energised, less bogged down by niggling side-effects and generally more able to do things.
At the same time, have to add that this past week was seriously hampered by exhaustion and one day left work a little earlier than normal cos was just not able to focus anymore. (But this weekend felt fine and have written a story and gone out and relaxed, so cannot complain about my energy right now...)
Also, am feeling other long term effects of the chemo such as my arms feeling less mobile from the burnt veins. So whereas now I can touch my hands and lower arms, albeit not harshly, if I just stretch out my arm it hurts. So too does dressing eg putting my hands into pantihose to put them on, or pulling on a top with a tight sleeve.
Then there are other new and ghastly impacts of the chemo but they will be overcome in time and you know what? I really do feel better.
And the cancer has gone.
Now let's hope that the radiation tomorrow does not bring new challenges. But whatever, I will deal with it. Although have to admit am a little apprehensive. It's a whole new experience but then I had no idea what the chemo involved either.
And what is amazing and making me feel so bouyant at this moment is that I can really feel my body come back to normal. It's hard to clarify but I feel more energised, less bogged down by niggling side-effects and generally more able to do things.
At the same time, have to add that this past week was seriously hampered by exhaustion and one day left work a little earlier than normal cos was just not able to focus anymore. (But this weekend felt fine and have written a story and gone out and relaxed, so cannot complain about my energy right now...)
Also, am feeling other long term effects of the chemo such as my arms feeling less mobile from the burnt veins. So whereas now I can touch my hands and lower arms, albeit not harshly, if I just stretch out my arm it hurts. So too does dressing eg putting my hands into pantihose to put them on, or pulling on a top with a tight sleeve.
Then there are other new and ghastly impacts of the chemo but they will be overcome in time and you know what? I really do feel better.
And the cancer has gone.
Now let's hope that the radiation tomorrow does not bring new challenges. But whatever, I will deal with it. Although have to admit am a little apprehensive. It's a whole new experience but then I had no idea what the chemo involved either.
writing a blog
In my last position, where staff were encouraged to have blogs as part of their work, I used to get sooooo irritated with people who seemed to spend their days saying: "Ooo, should I post that pic on my blog?", "Guess how many people read my blog yesterday" and "Oh my goody goodness, I got a comment!" and other annoying things.
Then I joined the fray***. And really, am still bowled over that someone from the Republic of Moldova is reading/has read this blog and just noticed have five readers from France and so on.
But now The Empathetic One has also started a blog. And the competition is on. Now I am lamenting that my blog is not on wordpress.com which seems to have better features and layout options, and I am constantly nagging: "So what are you adding now?" in my special whining, childlike tone which annoys even me. (Don't think I use it often though.)
Must say though: blogging is time-consuming but I do enjoy it. Often wish I had more cheerful things to say but do want to record my journey with/without/alongside cancer and how it affects me. One complaint: why do so few people post comments?
*** The day I was diagnosed with breast cancer, Thursday January 15, was the day I decided to start a blog. And to go to therapy to deal with it. Both took me about a month to get started but have not regretted either. Have regretted getting diagnosed with cancer though. What a fak up. Changed my life in ways I could have done without but am determined to overcome all problems, no matter how disheartening it may seem at times.
Then I joined the fray***. And really, am still bowled over that someone from the Republic of Moldova is reading/has read this blog and just noticed have five readers from France and so on.
But now The Empathetic One has also started a blog. And the competition is on. Now I am lamenting that my blog is not on wordpress.com which seems to have better features and layout options, and I am constantly nagging: "So what are you adding now?" in my special whining, childlike tone which annoys even me. (Don't think I use it often though.)
Must say though: blogging is time-consuming but I do enjoy it. Often wish I had more cheerful things to say but do want to record my journey with/without/alongside cancer and how it affects me. One complaint: why do so few people post comments?
*** The day I was diagnosed with breast cancer, Thursday January 15, was the day I decided to start a blog. And to go to therapy to deal with it. Both took me about a month to get started but have not regretted either. Have regretted getting diagnosed with cancer though. What a fak up. Changed my life in ways I could have done without but am determined to overcome all problems, no matter how disheartening it may seem at times.
fatigue
oy, reading about fatigue and cancer and becoming anxious especially as i have been told i will become tired with radiation and have been advised, by the radiation oncologist, to opt for the last appointment of the day as will need to go home and rest..... rather than go (back) to work....
fatigue and cancer<
fatigue and cancer<
You know you are reading a US site when....
You know you are reading an American site rather than say an African site when this is how 'social worker' is defined in the glossary:
social worker: a mental health professional with a master's degree in social work (MSW). A social worker can help people manage medical, psychological, social, and educational needs. american cancer society glossary
social worker: a mental health professional with a master's degree in social work (MSW). A social worker can help people manage medical, psychological, social, and educational needs. american cancer society glossary
radiation starts tomorrow
Been reading a little about radiation. Start tomorrow and feel a little unclear about it all so, despite some people telling me not to read too much about it as I tend to get anxious, am on that brilliant american cancer society site www.cancer.organd finding out about it.
preventing and managing radiation side effects
preventing and managing radiation side effects
Friday, May 15, 2009
the one exciting thing about having cancer
I love pumpernickel bread. That dark, kinda dry, black German bread. Until I started treatment for breast cancer I had a slice for breakfast almost every day, mostly with Matjes herring and sometimes with boiled egg. And I bought it in vacuum packed boxes, identical to the ones I bought at Whole Foods when I was in the US a few years ago.
Anyway, now that my true taste is coming back, I am back on pumpernickel. And have been amazed to discover that every single pack has at least one strand of my hair on it (on, not in!) because it was clearly at the time of losing my hair that I packed the boxes away.
Now I am delighting in watching my hair grow back, curious as to what colour it will be and what texture (have read that both are likely to be different). One thing worries me though: would prefer if it didn't grow back without pigmentation at first, which I believe can also happen, that is, first grey until the pigmentation kicks in a few months later.
Now enjoy standing in front of the mirror, staring at the strands sticking up on my head. Ja, that is the one exciting thing about having had cancer, watching and speculating about the unknown hairgrowth. Ok, I never went completely bald, only on the sides - which hairdresser Carlos said was cos I sleep on my side - but now it is definately growing back faster. Been almost five weeks since I had my last AC chemo session.
The place where I bought the wig which I have never worn said my length of hair (I went there the morning before my first chemo session) said it would take about three months to grow back. Mmmmm.......
And will I miss my hats? Dunno but doubt it.
Anyway, now that my true taste is coming back, I am back on pumpernickel. And have been amazed to discover that every single pack has at least one strand of my hair on it (on, not in!) because it was clearly at the time of losing my hair that I packed the boxes away.
Now I am delighting in watching my hair grow back, curious as to what colour it will be and what texture (have read that both are likely to be different). One thing worries me though: would prefer if it didn't grow back without pigmentation at first, which I believe can also happen, that is, first grey until the pigmentation kicks in a few months later.
Now enjoy standing in front of the mirror, staring at the strands sticking up on my head. Ja, that is the one exciting thing about having had cancer, watching and speculating about the unknown hairgrowth. Ok, I never went completely bald, only on the sides - which hairdresser Carlos said was cos I sleep on my side - but now it is definately growing back faster. Been almost five weeks since I had my last AC chemo session.
The place where I bought the wig which I have never worn said my length of hair (I went there the morning before my first chemo session) said it would take about three months to grow back. Mmmmm.......
And will I miss my hats? Dunno but doubt it.
Thursday, May 14, 2009
why do i want a cigarette?
I feel like a cigarette yet I have not smoked for eight years. Find that terrifying. This is not the first time I have felt like one and in fact have not dared even have a puff - always say if I have one puff, I'll have a cigarette then I will vomit and then go out and buy a packet. I think it's psychological; want to be filled, miss the experience and feel in need of some comfort.
On a more down-to-earth note, had my crown fitted today and can see why it was not allowed while on chemo. In fact, the maxilla-facial surgeon and the dentist were ignorant - the procedure lends itself to possible infection and in fact it was damn sore as they pressed it down onto my gums. The Yoga Man says it's because the chemo affected my gums.
Otherwise, very happy that ate some herring tonight - that's a good sign that my taste is going back to normal.
Popped into Stax to buy a hand blender but they only had a Bosch one for over R1000 and even the assistant looked sceptical, saying they usually have a Sunbeam one for R150, someother make for R350 and a Kenwood for about R550. Following the other night's successful soup wanted to make tomato soup but wanted a hand/stick blender rather than a jug, although my sister says it's not as good.
After my unsuccessful excursion to Stax, popped into what used to be my favourite shop, the fish shop, to see if they had sprats but no such luck. Then looked at the Matjes herring and it looked appealing, so bought it - and ate some when got back. And it is nice. Used to have it for breakfast on pumpernickel bread every morning before I started treatment for cancer. So very happy. Want to lose some weight and also want to eat healthier like I used to (pre chemo).
This is now my fifth week without chemo. Funnily enough, been more tired than before. Bouncy and chirpy as all hell for most of the day, then get tired. Now wondering if I am going to write up that interview tonight as planned, and as I need to.
On a more down-to-earth note, had my crown fitted today and can see why it was not allowed while on chemo. In fact, the maxilla-facial surgeon and the dentist were ignorant - the procedure lends itself to possible infection and in fact it was damn sore as they pressed it down onto my gums. The Yoga Man says it's because the chemo affected my gums.
Otherwise, very happy that ate some herring tonight - that's a good sign that my taste is going back to normal.
Popped into Stax to buy a hand blender but they only had a Bosch one for over R1000 and even the assistant looked sceptical, saying they usually have a Sunbeam one for R150, someother make for R350 and a Kenwood for about R550. Following the other night's successful soup wanted to make tomato soup but wanted a hand/stick blender rather than a jug, although my sister says it's not as good.
After my unsuccessful excursion to Stax, popped into what used to be my favourite shop, the fish shop, to see if they had sprats but no such luck. Then looked at the Matjes herring and it looked appealing, so bought it - and ate some when got back. And it is nice. Used to have it for breakfast on pumpernickel bread every morning before I started treatment for cancer. So very happy. Want to lose some weight and also want to eat healthier like I used to (pre chemo).
This is now my fifth week without chemo. Funnily enough, been more tired than before. Bouncy and chirpy as all hell for most of the day, then get tired. Now wondering if I am going to write up that interview tonight as planned, and as I need to.
Wednesday, May 13, 2009
buzzing insanely
It's a frew minutes to midnight and i cannot stop writing. Writing up my interview and it feels like it's going well but also feels very different both in style, tone and content to what and how I usually write. Must force myself to go to sleep now else gonna be wrecked tomorrow.
Gonna sip some Boplaas white port and chill.
Gonna sip some Boplaas white port and chill.
A two-tone day
Bounced up today. Had not slept too well but after my yoga poses and some exercises - feet up against the wall for 15 minutes; lying with body elevated on foams and knees bent with feet together, also raised, for 5 minutes; leg stretches with theraband and another stretch with bent knees for about a total of another 5 minutes - was more than ready to face the day.
"This is the new me!" I declared. Going to be exuberant and fun and not going to spend the night on the Internet but going to chat. No more heaviness. Enter lightness.
And it lasted for the morning.
Then went to therapy. Then dashed off home to fetch something. And by the time I came back to the office was feeling tired. By 4.30pm felt it was pointless sitting there. Was working but the nature of what I could do was limited. Felt the tiredness wash over me. So came home and lay down and kinda dozed.
Now got one hour to be online, then gonna chat and relax.
However, that does mean that starting to write my in interview with Ndumiso Ngcobo is not going to happen. Not tonight.
But not depressed. Maybe just a little groggy now. And that is probably because I extended the 45 minutes nap period - go any longer and you move into another sleep cycle and wake up groggy.
Starting tomorrow with the dentist - need to fit the crown which I was not able to do while on chemo. Then going to go to work and take it all in my stride - not get stressed and, even more importantly, not going to pop in anywhere during the day. Like "popping in" and had planned to pop into the tailor to collect my skirts being altered, the listeners' library to get a new CD book to listen to in my car and possibly Stax to buy a hand blender on my way back from the dentist but it's that type of popping in that tires me out. Trouble is cannot do all that on Saturday either, not if going to the Clive Chipkin talk on his new book Johannesburg in Transition read review and some info on it at Boekehuis and then write up my interview... ok, deep breath... somehow it will all get done.
"This is the new me!" I declared. Going to be exuberant and fun and not going to spend the night on the Internet but going to chat. No more heaviness. Enter lightness.
And it lasted for the morning.
Then went to therapy. Then dashed off home to fetch something. And by the time I came back to the office was feeling tired. By 4.30pm felt it was pointless sitting there. Was working but the nature of what I could do was limited. Felt the tiredness wash over me. So came home and lay down and kinda dozed.
Now got one hour to be online, then gonna chat and relax.
However, that does mean that starting to write my in interview with Ndumiso Ngcobo is not going to happen. Not tonight.
But not depressed. Maybe just a little groggy now. And that is probably because I extended the 45 minutes nap period - go any longer and you move into another sleep cycle and wake up groggy.
Starting tomorrow with the dentist - need to fit the crown which I was not able to do while on chemo. Then going to go to work and take it all in my stride - not get stressed and, even more importantly, not going to pop in anywhere during the day. Like "popping in" and had planned to pop into the tailor to collect my skirts being altered, the listeners' library to get a new CD book to listen to in my car and possibly Stax to buy a hand blender on my way back from the dentist but it's that type of popping in that tires me out. Trouble is cannot do all that on Saturday either, not if going to the Clive Chipkin talk on his new book Johannesburg in Transition read review and some info on it at Boekehuis and then write up my interview... ok, deep breath... somehow it will all get done.
Tuesday, May 12, 2009
facebook and linkedin
Having fun connecting with old friends via facebook and linkedin. Tonight made soup my friend Avra from Israel gave me the recipe for - a combination of pumpkin (I used butternut), carrot and sweetpotato (I left out the onion as have a, hopefully dwindling, food intolerance towards it but sure one would have it even nicer) and then later chatted to my friend Alan whom I met at varsity - he was at the boys' res opposite mine. Now he lives in Amsterdam.
Mmmm... he said when he last connected with me 10 years ago I was having health problems. Ja, thyroid. Was very sick though. And that was five and a half months of constant illness. Now I often feel perfect, even if it does not last forever. Told him I now had cancer and am starting radiation on Monday.
Sjoe....
Mmmm... he said when he last connected with me 10 years ago I was having health problems. Ja, thyroid. Was very sick though. And that was five and a half months of constant illness. Now I often feel perfect, even if it does not last forever. Told him I now had cancer and am starting radiation on Monday.
Sjoe....
bit sleepy today
Didn't sleep well last night. Think I was mostly awake between 2.20am and 4.20am or something like that and know I was thinking about cancer but cannot remember the details.
When I became tired at work today, I remembered why. Plain lack of sleep. Caused by anxiety.
Have got myself into a pickle re the interview I did. It now has to be handed in on Monday cos of upcoming space devoted entirely to the book awards. Now my stamina has been questionable but, hey forgot, worked out if I write a little on Friday afternoon while I wait for the pages, then write it on Saturday afternoon and again on Monday, should make it. Might need to cancel my teeth being cleaned though, to allow for an extra hour.
Not a good time to do extra work, as The Empathic One so wisely stated. Could him The Sage. One lives and learns.
Otherwise all well. Busy and under pressure at work but guess that is a good thing too.
When I became tired at work today, I remembered why. Plain lack of sleep. Caused by anxiety.
Have got myself into a pickle re the interview I did. It now has to be handed in on Monday cos of upcoming space devoted entirely to the book awards. Now my stamina has been questionable but, hey forgot, worked out if I write a little on Friday afternoon while I wait for the pages, then write it on Saturday afternoon and again on Monday, should make it. Might need to cancel my teeth being cleaned though, to allow for an extra hour.
Not a good time to do extra work, as The Empathic One so wisely stated. Could him The Sage. One lives and learns.
Otherwise all well. Busy and under pressure at work but guess that is a good thing too.
Monday, May 11, 2009
saw radiation oncologist today
very tired. busy day, went to see radiation oncologist. she was the first specialist i saw after i was diagnosed and found her very friendly and helpful - my GP had recommended her cos she was so nice, he said.
But today felt she rushed through everything. I now see that I have to sign an indemnity form, saying everything was explained about the radiation - side effects and procedure and so on - but really i don't feel it was.
Today's appointment felt like i was on a conveyer belt and before I knew it, I was told to be measured for the radiation. Had a scan, they tattoed me - ja permanently with three little pin prick marks to ensure they place the radiation in the correct place and then I left, confused. Was I going to see the dr again and if so, when?
Went to the front desk to ask and they said I will see her weekly. The radiation is daily. Then I asked when would I see her and was told would get a form with my schedule probably on Monday when I came back.
Radiologist who did the scan and measuring gave me a booklet to read - it contains the indemnity form although that was not specifically mentioned - in fact, I just saw the booklet next to my bag and said: Is this for me?. The booklet is very helpful with a pleasing, friendly tone but still feel i want more explanation.
Anyway.... going to sleep shortly.
Tired. Today also interviewed a fab writer, Ndumiso Ngcobo, met my friend Carlos for a quick early supper and now fading. Got to up early to take car in for service.
Start radiation on Monday.
But today felt she rushed through everything. I now see that I have to sign an indemnity form, saying everything was explained about the radiation - side effects and procedure and so on - but really i don't feel it was.
Today's appointment felt like i was on a conveyer belt and before I knew it, I was told to be measured for the radiation. Had a scan, they tattoed me - ja permanently with three little pin prick marks to ensure they place the radiation in the correct place and then I left, confused. Was I going to see the dr again and if so, when?
Went to the front desk to ask and they said I will see her weekly. The radiation is daily. Then I asked when would I see her and was told would get a form with my schedule probably on Monday when I came back.
Radiologist who did the scan and measuring gave me a booklet to read - it contains the indemnity form although that was not specifically mentioned - in fact, I just saw the booklet next to my bag and said: Is this for me?. The booklet is very helpful with a pleasing, friendly tone but still feel i want more explanation.
Anyway.... going to sleep shortly.
Tired. Today also interviewed a fab writer, Ndumiso Ngcobo, met my friend Carlos for a quick early supper and now fading. Got to up early to take car in for service.
Start radiation on Monday.
Sunday, May 10, 2009
love sundays
Really enjoying my day. have not done much but went to an interesting former military barracks which is now a mini-supermarket in Greymont with a friend, then to a veggie shop then to Lifestyle where bought a lemon tree. then went out for lunch and ate grilled sardines with green pepper and boiled potatoes, then planted morogo morogo and more-re-morogo in pot - which totally exhausted me, the planting that is, as the pot was largish and needed lots of potting soil.
Scary that, can only lounge around and do wonder when this chemo and its effects are going to leave my body. Still have mouth thrush and religiously eating yoghurt as The Tango Man suggested, especially the ones with lacto basillus, but might need to revert back to the yellow emulsion as not sure it's working.
One of my favourite activities is watching my hair grow. Ok, I am being facetious but like to pull off my little cotton cap I wear around the house and stare into the mirror. Cannot work out if it's growing back dark as per usual or grey, that is, without pigmentation which then kicks in only later.
Somewhat irritated that cannot get through to cancer.org. Seems to be a problem with the site and want to read about radiation. Seeing the radiation oncologist tomorrow. So far what I have read on other sites has not been that endearing.
Scary that, can only lounge around and do wonder when this chemo and its effects are going to leave my body. Still have mouth thrush and religiously eating yoghurt as The Tango Man suggested, especially the ones with lacto basillus, but might need to revert back to the yellow emulsion as not sure it's working.
One of my favourite activities is watching my hair grow. Ok, I am being facetious but like to pull off my little cotton cap I wear around the house and stare into the mirror. Cannot work out if it's growing back dark as per usual or grey, that is, without pigmentation which then kicks in only later.
Somewhat irritated that cannot get through to cancer.org. Seems to be a problem with the site and want to read about radiation. Seeing the radiation oncologist tomorrow. So far what I have read on other sites has not been that endearing.
not a victim, but...
ok ok, don't feel like a victim but do feel acted upon, not the one in total control ( see previous post)
is it possible not to be a cancer victim?
Everything one reads about it, and everything people such as therapists suggest, is not be a victim of cancer. Take control, they say, you are not your cancer (believe that is the title of a book), blah blah blah.
Well it is damn difficult. Because as a patient, you are acted upon by doctors. No matter how much reading you do and how much u educate yourself on the subject, these doctors have years of training and years of experience and so know far more. And although it is frustrating that say the oncologist does not discuss - in detail - all the possible side effects of the chemo, maybe it's better cos who knows which side effects you are going to have?
And another thing. Still pretty overwhelmed by the fact that the cancer is gone - don't wanna make it mine, "my cancer", not wishing for that level of intimacy with it -- but it is not over, not yet. Still somewhat anxious/concerned about the upcoming radiation but even more so, know it far far from over as still have the chemo within me. My mouth still feels funny 'cos it still has thrush and since this afternoon, post-bookclub, have a shit taste in my mouth. And my hands and arms are still sore - burnt veins from the chemo - and although i ate a side salad tonight, don't think will do that again in a hurry. It irritated my tongue a little and the baked potato part of my meal was far better.
Thinking.... it's not that I feel like a victim but it's damn hard to take control when your doctors hold the upper hand and when your body is dictating how you feel and what you can do and what you can eat.
Well it is damn difficult. Because as a patient, you are acted upon by doctors. No matter how much reading you do and how much u educate yourself on the subject, these doctors have years of training and years of experience and so know far more. And although it is frustrating that say the oncologist does not discuss - in detail - all the possible side effects of the chemo, maybe it's better cos who knows which side effects you are going to have?
And another thing. Still pretty overwhelmed by the fact that the cancer is gone - don't wanna make it mine, "my cancer", not wishing for that level of intimacy with it -- but it is not over, not yet. Still somewhat anxious/concerned about the upcoming radiation but even more so, know it far far from over as still have the chemo within me. My mouth still feels funny 'cos it still has thrush and since this afternoon, post-bookclub, have a shit taste in my mouth. And my hands and arms are still sore - burnt veins from the chemo - and although i ate a side salad tonight, don't think will do that again in a hurry. It irritated my tongue a little and the baked potato part of my meal was far better.
Thinking.... it's not that I feel like a victim but it's damn hard to take control when your doctors hold the upper hand and when your body is dictating how you feel and what you can do and what you can eat.
Saturday, May 9, 2009
forgot to mention...
forgot to mention last night that think it's sick that Jacob Zuma's inauguration cost R75-million. Some great pics from today: Jacob Zuma's inauguration Mandela looks great.
Friday, May 8, 2009
inuaguration tomorrow
Jacob Zuma is being inaugurated tomorrow as president of South Africa. Ages ago it seemed a dreadful, fearful possibility. Now that it's about to happen, doesn't feel like such a big deal. Feels like life is going to on like before.
Bumped into someone in Rosebank today who said they had bumped into the wife of a prominant ANC-connected businessman. She had been carrying a packet from Paloma boutigue. "It's for tomorrow!I am having this (African) traditional outfit made but just in case it doesn't work out I've bought this," she had told my friend.
"What's happening tomorrow?" my friend had asked, telling me in only a slighly embarrassed tone that she had forgotten it was the inauguration.
So it's not just me who is pretty blase about it all. On the other hand, there is a part of me very conscious and possibly slightly envious of the fact that my other friend is covering it for the paper and has to be at the Union Buildings in Pretoria by 5.30am, one of 900 journalists accredited to do so by Wednesday.
Bumped into someone in Rosebank today who said they had bumped into the wife of a prominant ANC-connected businessman. She had been carrying a packet from Paloma boutigue. "It's for tomorrow!I am having this (African) traditional outfit made but just in case it doesn't work out I've bought this," she had told my friend.
"What's happening tomorrow?" my friend had asked, telling me in only a slighly embarrassed tone that she had forgotten it was the inauguration.
So it's not just me who is pretty blase about it all. On the other hand, there is a part of me very conscious and possibly slightly envious of the fact that my other friend is covering it for the paper and has to be at the Union Buildings in Pretoria by 5.30am, one of 900 journalists accredited to do so by Wednesday.
don't understand myself
My sister phoned and asked if I wanted to go to a talk on breast cancer one Sunday morning in June from 9.30am to 12. It's a fundraiser and someone she knows/knows of who has had breast cancer will talk. I said "yes" but the truth is I don't want to go. Will go because I feel I should, rather than want to. In truth, the thought of getting up early on a Sunday to do that... maybe if the talk was along the lines of the book I am reading www.amazon.com/Love-Medicine-Miracles-Self-Healing-Exceptional/dp/0060919833, about how to boost your own immune system and so heal yourself, but just about breast cancer.... dunno. I kinda feel removed from breast cancer. Yes I know I have it but I don't have anything which is obviously in the boob and as I have kept saying to people who said: "Are you going to have a lumpectomy (everyone's favourite word relating to breast cancer as it alleviates the need for a dreaded masectomy)?" - "NO! You cannot have a lumpectomy if you don't have a lump." The truth is not all lumps in the breast are suitable for lumpectomy anyway.
Oh well. Of course I will go to the talk but kinda wonder why I felt so averse to it. Feel better about it now that I have written about it.
Oh well. Of course I will go to the talk but kinda wonder why I felt so averse to it. Feel better about it now that I have written about it.
Thursday, May 7, 2009
great news - eternally grateful
Just a quick note as still sitting in the office trying to make up for the three and a half hours I was out today, visiting doctors. It was quite traumatic but boy oh boy, am I grateful.
First The Tango Man said I had to decide: radiation or surgery. And surgery would be masectomy of the left breast and removal of the lymph nodes under the armpit. Radiation has its risks, he explained, especially the compounding of the affect on the heart of the chemo, radiation and then the herceptin I still have to have.
Not one is better than the other, he explained, else he would recommend it but said whatever decision I made would be the right one.
"How can I decide?" I asked, pretty tearful. "Is there anything I can read to help me make my decision?". The answer was no, only reading on basic principles but nothing that was tailor-made re what was best for me.
I enviaged a weekend of everyone phoning me every two minutes to give their two-cents worth while I scanned the Internet relentlessly.
Phoned my dad who is a doctor who said: "Radiation! Surgery can bring secondary infections.....". Phoned The Emphathetic One who said: "I agree with your dad! Do radiation; you heal slowly (cos of thyroid problems)".
I rushed off to the surgeon. And guess what he said? "Don't operate. Go for radiation."
"I want to hug you!" I shrieked, "but without any clothes on, I can't!" - for I was lying on his examination table, topless.
And guess what else he had to say? That 5-10% of people have what is termed "a complete response" to chemo like I did. Most the tumour shrinks, or it does not respond well and then they need more. But I had four chemo sessions for breast cancer and now the cancer is gone. It's enough to make one turn religious overnight.
But I have agreed on one thing: should the cancer return, I will willingly undergo masectomy.
Seeing the radiation oncologist on Monday. Have seen her already (have seen everyone - gosh it was my third visit to that surgeon and on the first he had preached masectomy. But due to my treatment and tests and response now said no).
Am so so so happy that want to go out for dinner to celebrate - again!!!
First The Tango Man said I had to decide: radiation or surgery. And surgery would be masectomy of the left breast and removal of the lymph nodes under the armpit. Radiation has its risks, he explained, especially the compounding of the affect on the heart of the chemo, radiation and then the herceptin I still have to have.
Not one is better than the other, he explained, else he would recommend it but said whatever decision I made would be the right one.
"How can I decide?" I asked, pretty tearful. "Is there anything I can read to help me make my decision?". The answer was no, only reading on basic principles but nothing that was tailor-made re what was best for me.
I enviaged a weekend of everyone phoning me every two minutes to give their two-cents worth while I scanned the Internet relentlessly.
Phoned my dad who is a doctor who said: "Radiation! Surgery can bring secondary infections.....". Phoned The Emphathetic One who said: "I agree with your dad! Do radiation; you heal slowly (cos of thyroid problems)".
I rushed off to the surgeon. And guess what he said? "Don't operate. Go for radiation."
"I want to hug you!" I shrieked, "but without any clothes on, I can't!" - for I was lying on his examination table, topless.
And guess what else he had to say? That 5-10% of people have what is termed "a complete response" to chemo like I did. Most the tumour shrinks, or it does not respond well and then they need more. But I had four chemo sessions for breast cancer and now the cancer is gone. It's enough to make one turn religious overnight.
But I have agreed on one thing: should the cancer return, I will willingly undergo masectomy.
Seeing the radiation oncologist on Monday. Have seen her already (have seen everyone - gosh it was my third visit to that surgeon and on the first he had preached masectomy. But due to my treatment and tests and response now said no).
Am so so so happy that want to go out for dinner to celebrate - again!!!
Wednesday, May 6, 2009
The night before....
Stompie Selibe - not the artwork I bought, but the artist
Very cold here, well, for Africa. Was storming and hailing earlier but only for a few minutes but am contemplating making a hot water bottle. As it is, am wrapped in an orange fleece blanket.
It is evening. Night really; it's dark. My throat is sore and my mouth still feels funny. Hope the thrush is not spreading to my throat. One good thing about the yellow thrush medication is that it does stop me eating for a while as it needs to seep into my pores. Been eating almost non-stop since came back from work. Bought Mozart frozen yoghurt on my way back - raspberry and granadilla flavours - but have not touched that which is now safely ensconced in the freezer. Instead been eating sweet melon and brie cheese and rye braed toast (not all together) and pitless dates. Delicious.
Well, tomorrow is kind of a D-Day but then again it's not. Every day of this process, to quote the doctor I saw yesterday - when I first got diagnosed and asked: "what now?" he had replied "oh,it's just a process".... humph!!!! - well every day of this process, this journey, this experience, this ordeal, this whatever, brings new insights and revelations and feelings.
Yesterday my scans were clear - and he even scanned the area around my collarbone without my mentioning that there had been a scare there might be a cancerous lump there. He had made my day by saying that if I were a first time patient he would never have known I have/had had cancer.
But now tomorrow I go see The Tango Man and The Composer. And a decision will be made re what treatment next. And although yesterday's doctor said no operation, in his view, I have already seen The Composer twice and he was talking masectomy. Yesterday's doctor - oh he needs a name, doesn't he - said they will quote statistics at me as to why I need an operation. Feel scared. Gonna have to obey as it were but it is too awful to contemplate and will wait to tomorrow although get tears in my eyes just thinking about it.
Talking of eyes, it reminds me that I went to see the opthalmologist today. And the blurry feeling I have been having, the sometimes blurred vision, is from exceptionally dry eyes caused by the chemo.
Very sad to hear she got divorced in February. Her husband thought she was too old, she said, after 35 years of being together, 32 of them married. "It's a cliche," she said, "but it's true. And funny, never thought he was a cliche kind of man". My heart goes out to her. He is also a doctor.
Anyway, reading Love, Medicine and Miracles by Bernie S Siegel. www.amazon.com/Love-Medicine-Miracles-Self-Healing-Exceptional/dp/0060919833 These books/stories only make sense when they are relevant to you and this one, about a positive attitude and one's immune system and so healing oneself (think that's what it's about) is making a lot of sense to me at the moment.
And at the back of my mind lurks the image of the artwork, think it's referred to as a monotype whatever that is, which I am collecting next week at the end of the exhibition, and how mournful it is, of skeletal bodies and even though I was chirpy was all hell when I bought it, wondering why I chose such a sad image. In the mood I am in now, want something bright and bouncy or even serene. Mmm... maybe not serene, that sounds corny. But in a way quite looking forward to seeing it again. Bizarre that I chose such a mournful pic from an exhibition full of jazz pics.
More about Bernie S Siegel:
www.spiritsite.com/writing/bersie
More about Stompie Selibe, the artist whose work I bought:
Civil Rights: Songs of Hope and Struggle
October 18, 2004
African-American singer, songwriter, and educator Jane Sapp collaborated with South African artist, musician, and educator Stompie Selibe in a program of freedom songs that speak out against inequality, racism, and injustice. With words that express courage and dreams, anger and hurt, strength and hope, this music inspired and united oppressed people, accompanying them in their long march toward freedom. Lessons drawn from the MUUS Unit on the American Civil Rights Movement and the South African Anti-Apartheid Movement preceded this program. For the 4th grade.
Jane Sapp (Mel King Fellow at MIT, Director of Voices of Today), African-American educator, musician, performer, and songwriter has made a career as an activist in civil rights and community organizing. She has worked for the past twenty-five years to develop techniques that help the silenced find their voices through the arts.
Stompie Selibe is a South African artist, musician, and art educator. He is deeply committed to empowering disadvantaged individuals and communities in South Africa, and has been involved in several South African outreach programs in the areas of education, health, and poverty relief. His work in Africa promotes reconciliation in divided communities through African drumming, music, and song.
Taken from:
musicunitesus.info/performances.html
Tuesday, May 5, 2009
double wow!
saw the mammagram doctor this morning who did an ultra-sound scan and said: "If you were a first-time patient, would never have said you have had cancer".
So wow! It is gone but now comes the tricky bit - what next? The mammogram doctor said he would not advocate any surgery whatsoever, just herceptin www.herceptin.com/index.jsp?q=herceptin&rls=com.microsoft:en-us:IE-SearchBox&ie=UTF-8&oe=UTF-8&sourceid=ie7&rlz=1I7ADBF and three monthly check-ups. He said radiation can cause permanent damage.
Oh and he confirmed: I have mouth thrush. Oh and I gave him hell, again (did ages ago after the diagnosis: how could he send me to the GP and how dare he say "oh, it's just a process!" "Do you know what kinda process I have been through and am going through now?" I said.
So wow! It is gone but now comes the tricky bit - what next? The mammogram doctor said he would not advocate any surgery whatsoever, just herceptin www.herceptin.com/index.jsp?q=herceptin&rls=com.microsoft:en-us:IE-SearchBox&ie=UTF-8&oe=UTF-8&sourceid=ie7&rlz=1I7ADBF and three monthly check-ups. He said radiation can cause permanent damage.
Oh and he confirmed: I have mouth thrush. Oh and I gave him hell, again (did ages ago after the diagnosis: how could he send me to the GP and how dare he say "oh, it's just a process!" "Do you know what kinda process I have been through and am going through now?" I said.
Monday, May 4, 2009
moldova
wow! someone from the republic of moldova is reading this blog. had to look up where it is
en.wikipedia.org/wiki/Moldova
en.wikipedia.org/wiki/Moldova
feeling much better
Feeling so much better. My mouth isn't but I am. In bed and it's fab. Determined to get my mouth better. Big day, well morning really, of tests tomorrow. Gotta get my mouth better. Even if I have to spend most of the week in bed.
oh and this wasn't posted at the time it says - but at about 10.40pm
oh and this wasn't posted at the time it says - but at about 10.40pm
quick note on chemo
I know and am grateful that chemotherapy can help me but fak it can also hurt you. Think I have been constantly at odds, apart from a day or two when I went away, since the last time I had chemo. Maybe not, but it sure feels like it.
The latest is my mouth. One ulcer on the side but can barely feel it and in fact, not even sure it's still there. However,my entire mouth feels funny: the upper palate too smooth, the tongue not ideal, the taste pretty yuck. Phoned the oncology centre and they told me to continue with the "yellow daffodils" as I now call it, the emulsion for mouth thrush.
Need to cheer myself up. Hope the beautician will do that although it's one I don't know. Off for a mani and pedi.
The latest is my mouth. One ulcer on the side but can barely feel it and in fact, not even sure it's still there. However,my entire mouth feels funny: the upper palate too smooth, the tongue not ideal, the taste pretty yuck. Phoned the oncology centre and they told me to continue with the "yellow daffodils" as I now call it, the emulsion for mouth thrush.
Need to cheer myself up. Hope the beautician will do that although it's one I don't know. Off for a mani and pedi.
Sunday, May 3, 2009
why i am having a liver function test
Found out why I need a liver function test - see below
Liver damage
The liver is the organ that breaks down (metabolizes) most of the chemotherapy drugs that enter the body. Unfortunately, some drugs can cause liver damage, including methotrexate, cytarabine, vincristine, and streptozocin. Most often the damage is temporary and the liver recovers a few weeks after the drug is stopped.
Signs of liver damage include:
* yellowing of the skin and the whites of the eyes (jaundice)
* fatigue
* pain under the lower part of the ribs on the right side
* swelling of the abdomen or in the feet
Blood tests may be needed to watch for possible liver damage. People who are older or who have hepatitis may be more likely to develop liver damage.
Source:www.cancer.org/docroot/ETO/content/ETO_1_4X_What_Are_The_Side_Effects_of_Chemotherapy.asp?sitearea=ETO
Liver damage
The liver is the organ that breaks down (metabolizes) most of the chemotherapy drugs that enter the body. Unfortunately, some drugs can cause liver damage, including methotrexate, cytarabine, vincristine, and streptozocin. Most often the damage is temporary and the liver recovers a few weeks after the drug is stopped.
Signs of liver damage include:
* yellowing of the skin and the whites of the eyes (jaundice)
* fatigue
* pain under the lower part of the ribs on the right side
* swelling of the abdomen or in the feet
Blood tests may be needed to watch for possible liver damage. People who are older or who have hepatitis may be more likely to develop liver damage.
Source:www.cancer.org/docroot/ETO/content/ETO_1_4X_What_Are_The_Side_Effects_of_Chemotherapy.asp?sitearea=ETO
crucial week ahead
This is the week when I am going to know what treatment is next on the list.
On Tuesday have to go for blood tests. They include liver function, although not quite sure why (someone who has been through breast cancer said cos the chemo can affect the liver, or something along that line). Then have to have a scan of the left breast and the left lymph node area.
Then need to wait for the blood test results which are not all immediate so two days later, see The Tango Man oncologist and The Composer surgeon.
If need chemo, then The Tango Man said have to have it the next day ie Friday although he said was sure the scans would be ok (I did not probe what that meant). But he was saying was that he did not think I needed more chemo.
And although The Tango Man said if my MRI scan was negative (for a tumour in the breast), which it was, I might not need surgery he is sending me to a surgeon, the one I have already seen twice and who had previously said "operate!" so would he really change his mind now?
Oy ya yoy.......
On a lighter note there were quite a number of Mexicans at this lunch party today. Did not realise that there was a Mexican community in South Africa although one of them said it was not big. Oh my goodness, with swine flu Mexicans have now become the new Nigerians... although the truth is they probably have not been there for a while but when u are immune compromised due to chemo, your ears prick up when someone talks about their Italian brother-in-law who travels a lot and who is in hospital while they work out what's causing his high temperature.. and you start thinking, how close has this lady been to her brother-in-law and how close have I been sitting to her? Lol... you can drive yourself crazy.
On Tuesday have to go for blood tests. They include liver function, although not quite sure why (someone who has been through breast cancer said cos the chemo can affect the liver, or something along that line). Then have to have a scan of the left breast and the left lymph node area.
Then need to wait for the blood test results which are not all immediate so two days later, see The Tango Man oncologist and The Composer surgeon.
If need chemo, then The Tango Man said have to have it the next day ie Friday although he said was sure the scans would be ok (I did not probe what that meant). But he was saying was that he did not think I needed more chemo.
And although The Tango Man said if my MRI scan was negative (for a tumour in the breast), which it was, I might not need surgery he is sending me to a surgeon, the one I have already seen twice and who had previously said "operate!" so would he really change his mind now?
Oy ya yoy.......
On a lighter note there were quite a number of Mexicans at this lunch party today. Did not realise that there was a Mexican community in South Africa although one of them said it was not big. Oh my goodness, with swine flu Mexicans have now become the new Nigerians... although the truth is they probably have not been there for a while but when u are immune compromised due to chemo, your ears prick up when someone talks about their Italian brother-in-law who travels a lot and who is in hospital while they work out what's causing his high temperature.. and you start thinking, how close has this lady been to her brother-in-law and how close have I been sitting to her? Lol... you can drive yourself crazy.
The Taste
Oh forgot to mention: got The Taste back. That metallic chemo taste which makes me feel nauseous. Ok don't feel so nauseous with it this time; but feel yucky. Now icecream is my new friend cos it's sweet and momentarily takes The Taste away. Of course The Pragmatic One says "stop fighting it; get used to it". I am trying.
so much to do tomorrow
In between work, have to:
* collect medication at the chemist (would have done it on Saturday but was in bed with flu);
* drop off three skirts at tailor for alterations (another missed Saturday task);
* go to listeners' library to get new book on CD to listen to in car (another missed Saturday task) - have Bishop Tutu's CD but finding it too Christian for me but might give it another try in the morning and decide;
* make it to beautician at 4pm for manicure and pedicure.
* collect medication at the chemist (would have done it on Saturday but was in bed with flu);
* drop off three skirts at tailor for alterations (another missed Saturday task);
* go to listeners' library to get new book on CD to listen to in car (another missed Saturday task) - have Bishop Tutu's CD but finding it too Christian for me but might give it another try in the morning and decide;
* make it to beautician at 4pm for manicure and pedicure.
learning to accept
I have just been chastised for not accepting that I am on chemo and therefore immune compromised. And it's true. I am sicker than I want to accept or, rather, I should not be so upset when something goes wrong physically. I should just accept it. And just deal with it.
So when I felt an ulcer inside my mouth just now, I should not get hysterical envisaging the throat thrush that made me unable to eat solids, but merely think: Ok, I have an ulcer; where is my yellow emulsion to treat it? Cos let's face it, it's not throat thrush yet and there is no need for it to deteriorate and become that. And it's not surprising that my immune is compromised and therefore I am getting an ulcer. That is what happens when one is on chemo.
Sjoe! Gonna have to learn a whole new way of thinking.
So when I felt an ulcer inside my mouth just now, I should not get hysterical envisaging the throat thrush that made me unable to eat solids, but merely think: Ok, I have an ulcer; where is my yellow emulsion to treat it? Cos let's face it, it's not throat thrush yet and there is no need for it to deteriorate and become that. And it's not surprising that my immune is compromised and therefore I am getting an ulcer. That is what happens when one is on chemo.
Sjoe! Gonna have to learn a whole new way of thinking.
much chirpier today!
Am really not a homebody and find staying at home a strain and a drain especially when want to go out, like yesterday. Now on my way out to Sandia, a friend, for lunch. Yippee!!
Saturday, May 2, 2009
pale
Just caught a glimpse of myself in the mirror. Look pale. Maybe it's the disappearing eyebrows which are present but thinned out. Maybe it's cos I have been indoors since yseterday evening cos of the flu. Maybe it's just what I look like.
thrown apart by flu
It's quite a challenge having cancer. I'm in the chemo phase - although will find out by end of next week if need more, maybe not - and there are all those niggly side-effects that can overwhelm your life if you're not careful.
There is the hair loss which includes rapidly disappearing eyebrows;precarious, in my case, threatening-to-split-in-half nails; stomach hassles; and, cannot think. Even worse is the constant threat of getting sick. Your immune system is compromised and this week I got flu. It really threw me; was more miserable than from just about anything and who knows, it might have been unrelated to the cancer.
But I am so sick of not feeling ok. Sick of not being able to go out, sick of missing things (today it was the Deborah Bell www.deborahbell.org/ walkabout at David Krut) and most of all, and this is the most downheartening (is there such a word?), the constant obsession with oneself and how one is feeling. In one sense, this blog just reinforces this.
But otherwise, am ok. Reading a fab book - Ndumiso Ngcobo's Is it Coz I'm Black? twodogs.book.co.za/blog/2008/10/13/is-it-coz-im-black-ndumiso-ngcobos-sequel-to-some-of-my-best-friends-are-white which is in the same vein as his first book, Some of my best friends are white. Both are hearty laugh-out-loud collections of essays/observations/satirical looks at life in the 'new South Africa'. Highly recommend them.
So life isn't so bad at all.
More on Deborah Bell:
www.davidkrutpublishing.com/2830/deborah-bell-recent-prints
www.whoswhosa.co.za/Pages/profilefull.aspx?IndID=8739
More on Ndumiso Ngcobo:
www.thoughtleader.co.za/silwane
There is the hair loss which includes rapidly disappearing eyebrows;precarious, in my case, threatening-to-split-in-half nails; stomach hassles; and, cannot think. Even worse is the constant threat of getting sick. Your immune system is compromised and this week I got flu. It really threw me; was more miserable than from just about anything and who knows, it might have been unrelated to the cancer.
But I am so sick of not feeling ok. Sick of not being able to go out, sick of missing things (today it was the Deborah Bell www.deborahbell.org/ walkabout at David Krut) and most of all, and this is the most downheartening (is there such a word?), the constant obsession with oneself and how one is feeling. In one sense, this blog just reinforces this.
But otherwise, am ok. Reading a fab book - Ndumiso Ngcobo's Is it Coz I'm Black? twodogs.book.co.za/blog/2008/10/13/is-it-coz-im-black-ndumiso-ngcobos-sequel-to-some-of-my-best-friends-are-white which is in the same vein as his first book, Some of my best friends are white. Both are hearty laugh-out-loud collections of essays/observations/satirical looks at life in the 'new South Africa'. Highly recommend them.
So life isn't so bad at all.
More on Deborah Bell:
www.davidkrutpublishing.com/2830/deborah-bell-recent-prints
www.whoswhosa.co.za/Pages/profilefull.aspx?IndID=8739
More on Ndumiso Ngcobo:
www.thoughtleader.co.za/silwane
Friday, May 1, 2009
a quick post
At work on this wonderful workers' day. Got a bad cold and sore throat but otherwise well. Don't feel ill as in temperature.
Been super busy seeing shows and now super busy - sometimes - at work.
PS: Just checked my temperature and it's fine. 35.9. Wonder if that is too low. Oy. Another worry....Just gonna take it again. Now it is 36.2 and seems ok. Gonna stop taking it every two seconds. And chill. As in relax!
Been super busy seeing shows and now super busy - sometimes - at work.
PS: Just checked my temperature and it's fine. 35.9. Wonder if that is too low. Oy. Another worry....Just gonna take it again. Now it is 36.2 and seems ok. Gonna stop taking it every two seconds. And chill. As in relax!
Subscribe to:
Posts (Atom)