Just been to see the lymph lady. Found out - from the reminder SMS i received just after 7am this morning - that she is an occupational therapist, rather than the phyiotherapist I presumed she was. But super qualified and liked the fact that when i filled in th obligatory form at the practice, it included a pamphlet about who is she and what she does and where she has studied etc. Very helpful - and reassuring.
Anyway, here's the situation (and for once I did not take notes): my left arm is swollen. In one place it is 1/2cm more than the right arm. Thought my t-shirt felt a little tight yesterday but thought I was imagining it. It could be caused my the infection I have cos my chest area is badly burnt. (I phoned the radiotherapists today to check if it was usual to have such a rapid deterioration - a week ago when I went for my last treatment it was light pink - and they said, yes, cos now have full dose of radiation in me and the effect is accumulative. Was told not to worry if it peels but that my week three it should start getting better. Great.)
Anyway, am seeing the lymph lady again next week, on Tuesday, and will know then or the week thereafter if it's lymphoedema. Until then, have been given massaging exercises to do at home, twice a day, and no arm cycle or anything with weights in the gym.
Forgot to ask re yoga so think I had better not go.
Oh and was given reading and quite frankly, if i do have lymphoedema it is far far worse than just a swollen arm which does not go down. Prone to infection and anything can set it off, and so on. Fakking dreadful.
And the words which kept echoing all the way home was: "Many people who have had breast cancer say the lymphoedema is the most challenging part. You brace yourself for chemo and you get over it. Then you get over the radiation. Then comes the lymphoedema."
She also explained why I was prone to it. First, the cancer was found in the lymph. Secondly, I was radiated over such a broad area. So they have whacked all the lymph glands there. Then they don't know how many lymph glands i have in that area. If only a few, and they are all whacked, then I am fakked. Also, some people have another pathway or something like that around the upper arm area. Don't know if I do.
Either way, all sounds bloody dreadful. Not sure how much more I can deal with, how much more I feel like dealing with but obviously will fight this with everything I have.
Monday, June 29, 2009
Sunday, June 28, 2009
amazing cancer blog
Every now and then come across amazing cancer blogs, like this one, about young people with cancer. And the writer of everythingchangesbook.com, Kairol Rosenthal, has written a book about her experiences too, with the same title and the subtitle: The Insider's Guide to cancer in your 20s and 30s. Like the bit I read in some pre-publicity thing for it which spoke about 'clubbing with chemo'. Gonna read more of that blog now.
Also read with great sadness a new blog mom then and now my friend has started about her mom, with the subtitle - alzheimers is not fun. Made me very sad reading it as her mom was my late's mom's friend. Have known her for years and years. So sad.
Also read with great sadness a new blog mom then and now my friend has started about her mom, with the subtitle - alzheimers is not fun. Made me very sad reading it as her mom was my late's mom's friend. Have known her for years and years. So sad.
beware the stiffening fingers
At first thought I was imagining it. So cancelled the message I had left for the doctor. Then phoned again a day or two later. It's true. My fingers are swelling during the night and at about 5am/6am, my rings are so tight. Then they gradually loosen.
Now going to see a lymph drainage expert on Monday. Been reading on the internet and although the specialist physio (let's call her J) said on the phone it sounds like after she has done one session, I might be able to massage it on my own, and maybe it's just a temporary reaction and good to catch it early and nip it in the bud... blah-blah (I finished radiation only on Monday), I am terrified as it sounds like I have lymphedema.
Also, went shopping today - for clothes - and realised in the dressing room mirror how burnt my skin is. Both on the area below my collarbone in a large section and also below the armpit above where the bra goes. It's deteriorated a lot since Monday.
So so much for not having major side effects. Well, that's one side of it. The other is: have miminal side effects except my fingers feel stiff (was saying earlier, thank goodness I am not a concert pianist) and also, have acted quickly on the swelling. It is so slight it cannot be seen and am seeing specialist person on Monday (only got message on Friday from doctor that I should phone J). so no need to panic yet. I refuse to have lymphedema (if only it were that easy but damnit, I should have been properly briefed re what to do and what to feel.)
more re lymphedema
Now going to see a lymph drainage expert on Monday. Been reading on the internet and although the specialist physio (let's call her J) said on the phone it sounds like after she has done one session, I might be able to massage it on my own, and maybe it's just a temporary reaction and good to catch it early and nip it in the bud... blah-blah (I finished radiation only on Monday), I am terrified as it sounds like I have lymphedema.
Also, went shopping today - for clothes - and realised in the dressing room mirror how burnt my skin is. Both on the area below my collarbone in a large section and also below the armpit above where the bra goes. It's deteriorated a lot since Monday.
So so much for not having major side effects. Well, that's one side of it. The other is: have miminal side effects except my fingers feel stiff (was saying earlier, thank goodness I am not a concert pianist) and also, have acted quickly on the swelling. It is so slight it cannot be seen and am seeing specialist person on Monday (only got message on Friday from doctor that I should phone J). so no need to panic yet. I refuse to have lymphedema (if only it were that easy but damnit, I should have been properly briefed re what to do and what to feel.)
more re lymphedema
Thursday, June 25, 2009
just a quick note
kinda cross with myself for making a biokinetics appointment so early tomorrow. ok, maybe it's not early in the general scheme of things but for me, it's crack of dawn. So need to go to sleep now even if don't really feel like it. Guess that means I'm ok, right?
Wednesday, June 24, 2009
a new time
Realising that I am spending more and more time hassling about other things ie non-cancer related. What a relief. Not being confronted with the swings of chemo treatment where one week was the treatment, the next the immune-compromised time (and increasingly, the time I gathered more side-effects), and the next the surfacing time - or at least, that's how i remember it now - followed by the daily anguish of radiation where i was always so hassled i'd be late, i was always early; on day two of nothing, feeling kinda different. (Well, not quite nothing: had to see a doctor yesterday and have blood tests relating to a side-effect but it was hopefully a one-off).
Now I have time to look around me as hopefully i will become less self-obsessed. And now what i see is not always what i like. Close friends have stuck by but acquaintances/sometime-friends have not. They seem awkward around me. I need to dwell on that. Or should I even bother?
My social skills are also rusty. That I need to work on.
It's also kinda scary feeling better, feeling ok. Cos now I remember how brilliant I felt, how healthy and energised and happy I felt, around the time I was diagnosed. I felt so good I could not believe I had cancer. Five and a half months ago. Been a long time. Didn't realise it was so long ago. It's gone quickly. And now I am also minus a mother cos mine passed away three and a half months ago.
Sjoe....Lots to think about now.
Now I have time to look around me as hopefully i will become less self-obsessed. And now what i see is not always what i like. Close friends have stuck by but acquaintances/sometime-friends have not. They seem awkward around me. I need to dwell on that. Or should I even bother?
My social skills are also rusty. That I need to work on.
It's also kinda scary feeling better, feeling ok. Cos now I remember how brilliant I felt, how healthy and energised and happy I felt, around the time I was diagnosed. I felt so good I could not believe I had cancer. Five and a half months ago. Been a long time. Didn't realise it was so long ago. It's gone quickly. And now I am also minus a mother cos mine passed away three and a half months ago.
Sjoe....Lots to think about now.
Monday, June 22, 2009
wow wow wow
So happy. finally had my last radiation session today. what a relief. an although my skin is a little red, well, it's redder today than before, and sometimes slighly itchy, and now my new sports bras are hurting and the doctor said must change to other bras where can let the strap fall loosely over my shoulder, all is well.
"The girls", as the radiotherapists are known there, laughed at me when I said I was tired. "It's your last session and you're only tired now! Puh- leaze....." they cried. And when I bemoaned my pinkish skin, they laughed too. "Pu-lease,".... they cried, "we have seen far worse".
I know I am lucky to have had minimal side effects. Well so far and let's keep hoping and praying it stays that way.
But it's funny. Was thinking. When I had chemo and my stomach was in agony - hell it would wake me up after 6am each morning - I was told that that was not caused by the chemo, not the chemo I was having.
Now, when I have a shit taste in my mouth (sporadically) and my mouth is so dry that sometimes I think I am going to vomit (mostly when I drive home at night, after drinking at least 1 litre of water!), I am told: "Oh, not, that cannot be from the radiation, not the radiation you are having; it must be a throw back to the chemo."
Hoo boy......
"The girls", as the radiotherapists are known there, laughed at me when I said I was tired. "It's your last session and you're only tired now! Puh- leaze....." they cried. And when I bemoaned my pinkish skin, they laughed too. "Pu-lease,".... they cried, "we have seen far worse".
I know I am lucky to have had minimal side effects. Well so far and let's keep hoping and praying it stays that way.
But it's funny. Was thinking. When I had chemo and my stomach was in agony - hell it would wake me up after 6am each morning - I was told that that was not caused by the chemo, not the chemo I was having.
Now, when I have a shit taste in my mouth (sporadically) and my mouth is so dry that sometimes I think I am going to vomit (mostly when I drive home at night, after drinking at least 1 litre of water!), I am told: "Oh, not, that cannot be from the radiation, not the radiation you are having; it must be a throw back to the chemo."
Hoo boy......
no longer understand anything
Went off this morning for what was to be my last radiation session. Had planned to buy cakes for the radiotherapists, had even discussed it all with my one sister and was feeling kinda bad that had not got it together. Had noticed that people give gifts when they finish their treatment but was too tired to make it to the shop in time (the exhaustion side-effects has finally kicked in).
Anyway, got there, minus the cakes which I decided could be bought another time, only to hear the machine had broken. Return at 4pm today but if not repaired, then tomorrow.
Felt like crying. And had to control myself as I drove off. Why was I so upset? Gosh, this was the last session, not the first. Am I such a control freak? No longer understand things.
But fine now. Have phoned, it's fixed and I am going this afternoon.
Anyway, got there, minus the cakes which I decided could be bought another time, only to hear the machine had broken. Return at 4pm today but if not repaired, then tomorrow.
Felt like crying. And had to control myself as I drove off. Why was I so upset? Gosh, this was the last session, not the first. Am I such a control freak? No longer understand things.
But fine now. Have phoned, it's fixed and I am going this afternoon.
Saturday, June 20, 2009
now i know what they were talking about
Right from the beginning of this diagnosis, before I had even chosen my doctors or started chemo, the first oncologist I saw told me that with radiation, I would get tired and irritable in the last three weeks and then three weeks afterwards.
Well, I now have one more treatment to go, on Monday, and boy oh boy, I have hit irritable. Screamed and ranted a few times tonight, over bugger-all.
Just going to have to sleep more. Good night.
PS: It's now almost 12.30am and I have still not gone to sleep and was up at 6.30am for an early biokinetics session. Guess that adds to the irritability.
Well, I now have one more treatment to go, on Monday, and boy oh boy, I have hit irritable. Screamed and ranted a few times tonight, over bugger-all.
Just going to have to sleep more. Good night.
PS: It's now almost 12.30am and I have still not gone to sleep and was up at 6.30am for an early biokinetics session. Guess that adds to the irritability.
Wednesday, June 17, 2009
by the way...
By the way (and this is my third posting of the night), I feel marvellous today, ever since work improved and I went to biokinetics with Lauren who is amazing. Made me feel so energised and I am getting fitter with each session. Have booked three a week for the future, provided the medical aid pay. If they don't, will change it to two.
the saga of my wig
On February 5 2009, World Cancer Day and the day I started chemo for breast cancer, I also bought a wig - before I went to chemo, in fact.
I liked it in the shop but by the time I left, I started to dislike it. I have never worn it. Instead, it is a permanent fixture on my dining room table, hidden on the side, between the marula seed bowl, the Anne Frank memorial ceramic and other bric a brac.
But damnit, I want the medical aid to pay for it, a sum of about R1400 if I remember correctly and that's excluding the brush, the special shampoo and who know's what else I bought, the only useful thing being the little black cotton cap recommended for "at home" and "when sleeping". I am wearing it even now. So that was well worth the R180 I think it cost, which seemed outrageous at the time. In fact, such a little cap is a must if having chemo for breast cancer as you can even wear it under those attractive, but itchy, 'fur' hats.
Anyway I have submitted the bill for the wig to the medical aid about five times. At first they did not respond at all. Then I complained, emailed instead of faxing it, got an automatic response saying they would look into it, but nothing happened.
I had arguments with the damn medical aid. "I have cancer and your oncology benefit you sent me the details of states that you pay for a wig if you lose your hair with treatment." "Rubbish," they responded, "the wig is not from the oncology programme but comes out of your savings plan." But they still did not pay. "No practice number" I was told. "But they are not a medical practice; they supply wigs," I protested. "You must get a letter of motivation from your oncologist," was their response.
So off I trotted to the oncology centre only to be told the dame who does these letters was on leave. And back today. And what does she tell me today? To re-submit it, using the oncologist's practice number, which she gave me.
What a to-do, and only because it was not explained clearly by the oncology centre in the first place. And then by the medical aid in the second place.
I liked it in the shop but by the time I left, I started to dislike it. I have never worn it. Instead, it is a permanent fixture on my dining room table, hidden on the side, between the marula seed bowl, the Anne Frank memorial ceramic and other bric a brac.
But damnit, I want the medical aid to pay for it, a sum of about R1400 if I remember correctly and that's excluding the brush, the special shampoo and who know's what else I bought, the only useful thing being the little black cotton cap recommended for "at home" and "when sleeping". I am wearing it even now. So that was well worth the R180 I think it cost, which seemed outrageous at the time. In fact, such a little cap is a must if having chemo for breast cancer as you can even wear it under those attractive, but itchy, 'fur' hats.
Anyway I have submitted the bill for the wig to the medical aid about five times. At first they did not respond at all. Then I complained, emailed instead of faxing it, got an automatic response saying they would look into it, but nothing happened.
I had arguments with the damn medical aid. "I have cancer and your oncology benefit you sent me the details of states that you pay for a wig if you lose your hair with treatment." "Rubbish," they responded, "the wig is not from the oncology programme but comes out of your savings plan." But they still did not pay. "No practice number" I was told. "But they are not a medical practice; they supply wigs," I protested. "You must get a letter of motivation from your oncologist," was their response.
So off I trotted to the oncology centre only to be told the dame who does these letters was on leave. And back today. And what does she tell me today? To re-submit it, using the oncologist's practice number, which she gave me.
What a to-do, and only because it was not explained clearly by the oncology centre in the first place. And then by the medical aid in the second place.
10 great tips on what to do when you are newly diagnosed
Wish I had read these tips from About.Com:Breast Cancer when I first got diagnosed. Especially like the idea of someone playing advocate in communicating updates to people.
Monday, June 15, 2009
had forgotten about it
Noticed something this morning I had not seen in months. In fact, it's not something which has ever played any significance in my life. But there I was, having a quick stare into the mirror wondering how long it would take before I could go hatless and just have a short cropped look, when I spotted it: light, blondish facial hair on the sides of my cheek. It must have gone away with the chemo, and has now returned. Welcome.
Later this morning, however, felt less cheerful when become suddenly, irrationally irritable. At nothing or no-one. There was nobody at work anyway as few work on Mondays. Just irritable. Felt like going home and sleeping. Later, much later, as in a few hours later at lunchtime, I started feeling better. Now could even go out for supper although am happily ensconced in front of the heater ..... with half pajamas on, so can always whizz back into proper clothes should the invite occur...
All this makes me pretty sure it was the radiation. Remember the doctor saying: "We usually advise our patients who work to come for the last appointment of the day so they can go home and sleep afterwards". I did (take the last appointment), for the first week or so but then leaving the office at 3.30pm to be there for their last daily appointment at 4pm became a bind and one, which then, was unneccessary. Now have four radiation sessions left..... and not sure can change it as tried to make Wednesday's one earlier and couldn't. Well, at least the irritability faded and maybe the nature of what I had to do to work had something to do with it.
Later this morning, however, felt less cheerful when become suddenly, irrationally irritable. At nothing or no-one. There was nobody at work anyway as few work on Mondays. Just irritable. Felt like going home and sleeping. Later, much later, as in a few hours later at lunchtime, I started feeling better. Now could even go out for supper although am happily ensconced in front of the heater ..... with half pajamas on, so can always whizz back into proper clothes should the invite occur...
All this makes me pretty sure it was the radiation. Remember the doctor saying: "We usually advise our patients who work to come for the last appointment of the day so they can go home and sleep afterwards". I did (take the last appointment), for the first week or so but then leaving the office at 3.30pm to be there for their last daily appointment at 4pm became a bind and one, which then, was unneccessary. Now have four radiation sessions left..... and not sure can change it as tried to make Wednesday's one earlier and couldn't. Well, at least the irritability faded and maybe the nature of what I had to do to work had something to do with it.
Sunday, June 14, 2009
sleepy.....zzzz.....
Have had a very busy weekend and tired now. Last night came back at 3am, the night before at 1.45 and although have relaxed today, have still not read a word in any book. Announced at bookclub on Saturday that had not read anything since the previous meeting, but don't want to do that again. Funny thing: am loving the book I am reading - A Wild Herb Soup by Emilie Carles - just read very little at a time.Plus the print is teeeeeeeeeny, so even if you read a lot, it's only three pages...
Five more radiation sessions to go and discovering I made an error with the bras: bought cotton bras but not all are sports bras. Need sports bras as in no seams and no metal bits. Breast is a little swollen and a little sore now from the treatment. And a little red. All just a little, thank goodness.
Oh and sorted out the R17 000 bill. Well, the oncology centre did. It was an error: the medical aid did not read a code correctly. So went on a shopping spree instead. Did not spend R17 000 but had fun: two skirts, an indulgently exquisite thick scarf, three t-shirts and a bag.
Five more radiation sessions to go and discovering I made an error with the bras: bought cotton bras but not all are sports bras. Need sports bras as in no seams and no metal bits. Breast is a little swollen and a little sore now from the treatment. And a little red. All just a little, thank goodness.
Oh and sorted out the R17 000 bill. Well, the oncology centre did. It was an error: the medical aid did not read a code correctly. So went on a shopping spree instead. Did not spend R17 000 but had fun: two skirts, an indulgently exquisite thick scarf, three t-shirts and a bag.
Wednesday, June 10, 2009
tips for breast cancer radiation
1) cotton wear
I was told to wear cotton sports bras and loose cotton tops. So hit the shops and bought bra after bra (wasn't able to get all I needed at one shop) and then bought about five cotton long-sleeved t-shirts in a size to big.
In week four of radiation (five weeks in total I was told so hope it's not extended) and still have worn only one of those t-shirts and plan on swopping the others for my proper size.
Re the bras, the ones I originally disliked have turned out to be a godsend, so suggest looking for ones with soft, padded straps which don't have metal pieces in the front where you are most likely to have sensitive skin.
Also, have discovered that 85% or 80% cotton, that is not 100% pure, is almost as good as .. so it's an option.
2) washing
Was told not to wash or rub skin or use soap but was not told could not lie down in a bath. You can't. So don't.
Oh but do try washing with aqueous cream. Ensure that it is not vitamin enriched, like the one I was using (I simply bought the aqueous cream I always used), or has any other added eriching stuff. ("Vitamins tend to heal and we want to destroy," said the one radiotherapist when I asked about the no-vitamins rule.)
So just dab the aqueous cream under your armpit - no rubbing - then shower it off.
3) deoderant
Was told no deoderant. Was told that as I am having radiation only on one side, can use deoderant on the other side.
All fine and well. But I never put together the no soap, no deoderant rule to equal "smell!" It got so bad that one evening I never went to a function I wanted to go to cos I smelt so badly. And it is pretty downheartening to step out of a bath (of a few cm deep) in the morning and your armpit, and therefore you, smells like a labourer who has just worked for 12 hours digging ditches.
(Ok, that was before being told about 'washing' with aqueous.)
Not sure why the doctors withhold important information but here it is: use Borox and plain Johnson's baby powder (was told only that one but preferably the antiseptic one which I have yet to find) and the combo works like deoderant. You can also mix the two and then dab, not rub, it under the arm. Downside? It forms a paste and can be a little messy, what with it falling about/down while you're getting dressed, but who cares when you no longer smell? oh i dislike the smell of powder but who cares about that either?
4) itchiness and other side effects
Not everyone's radiation is the same. Mine is over the entire left chest area, from above the elbow to up to the chin, to the breastbone,and the same area at the back (I think), minus my lungs and heart (well beaming less to those areas). The point is: if you radiation is up to your chin, you are likely to start getting symptoms in the V-area in the front of your chest. The radiologists tell me that everyone (ok, maybe everyone in sunny South Africa) has sun damage there, whether you are consciously in the sun or not, so the first side effects are there. In my case, itchiness. The radiologists told me just to dab aqueous cream there but when I saw the dcotor she gave me a prescription for some cream which the pharmacist mixed with aqueous cream. So far have been able to use it once a day and it's sufficient although the other night used to twice during the night (keep it next to my bed).
Meanwhile, I am getting excited as it looks like have only eight radiation sessions left. I know that this is the time the side-effects kick in, and that they last for about three weeks after the treatment has ended, but still excited. Felt tired at the end of work today even though had arrived late after treatment and been out for an hour cos of biokinetics, but not tired anymore. So again I think the exhaustion must have something to do with work itself. Dunno.
And again my throat is sore and although they adjusted the radiation to beam less over my throat, and removed the headrest which was also exposing my throat to it, it is sore again. Still eating solids but not sure for how long.
But still excited I can see the end of this treatment in sight. Next up will be herceptin ......
Oh and got a bill for R17000 today - the medical aid paid half of the radiation and that is only a portion of the total radiation treatment but will go ask the centre tomorrow if this is the norm and then take it from there.
But still excited....
I was told to wear cotton sports bras and loose cotton tops. So hit the shops and bought bra after bra (wasn't able to get all I needed at one shop) and then bought about five cotton long-sleeved t-shirts in a size to big.
In week four of radiation (five weeks in total I was told so hope it's not extended) and still have worn only one of those t-shirts and plan on swopping the others for my proper size.
Re the bras, the ones I originally disliked have turned out to be a godsend, so suggest looking for ones with soft, padded straps which don't have metal pieces in the front where you are most likely to have sensitive skin.
Also, have discovered that 85% or 80% cotton, that is not 100% pure, is almost as good as .. so it's an option.
2) washing
Was told not to wash or rub skin or use soap but was not told could not lie down in a bath. You can't. So don't.
Oh but do try washing with aqueous cream. Ensure that it is not vitamin enriched, like the one I was using (I simply bought the aqueous cream I always used), or has any other added eriching stuff. ("Vitamins tend to heal and we want to destroy," said the one radiotherapist when I asked about the no-vitamins rule.)
So just dab the aqueous cream under your armpit - no rubbing - then shower it off.
3) deoderant
Was told no deoderant. Was told that as I am having radiation only on one side, can use deoderant on the other side.
All fine and well. But I never put together the no soap, no deoderant rule to equal "smell!" It got so bad that one evening I never went to a function I wanted to go to cos I smelt so badly. And it is pretty downheartening to step out of a bath (of a few cm deep) in the morning and your armpit, and therefore you, smells like a labourer who has just worked for 12 hours digging ditches.
(Ok, that was before being told about 'washing' with aqueous.)
Not sure why the doctors withhold important information but here it is: use Borox and plain Johnson's baby powder (was told only that one but preferably the antiseptic one which I have yet to find) and the combo works like deoderant. You can also mix the two and then dab, not rub, it under the arm. Downside? It forms a paste and can be a little messy, what with it falling about/down while you're getting dressed, but who cares when you no longer smell? oh i dislike the smell of powder but who cares about that either?
4) itchiness and other side effects
Not everyone's radiation is the same. Mine is over the entire left chest area, from above the elbow to up to the chin, to the breastbone,and the same area at the back (I think), minus my lungs and heart (well beaming less to those areas). The point is: if you radiation is up to your chin, you are likely to start getting symptoms in the V-area in the front of your chest. The radiologists tell me that everyone (ok, maybe everyone in sunny South Africa) has sun damage there, whether you are consciously in the sun or not, so the first side effects are there. In my case, itchiness. The radiologists told me just to dab aqueous cream there but when I saw the dcotor she gave me a prescription for some cream which the pharmacist mixed with aqueous cream. So far have been able to use it once a day and it's sufficient although the other night used to twice during the night (keep it next to my bed).
Meanwhile, I am getting excited as it looks like have only eight radiation sessions left. I know that this is the time the side-effects kick in, and that they last for about three weeks after the treatment has ended, but still excited. Felt tired at the end of work today even though had arrived late after treatment and been out for an hour cos of biokinetics, but not tired anymore. So again I think the exhaustion must have something to do with work itself. Dunno.
And again my throat is sore and although they adjusted the radiation to beam less over my throat, and removed the headrest which was also exposing my throat to it, it is sore again. Still eating solids but not sure for how long.
But still excited I can see the end of this treatment in sight. Next up will be herceptin ......
Oh and got a bill for R17000 today - the medical aid paid half of the radiation and that is only a portion of the total radiation treatment but will go ask the centre tomorrow if this is the norm and then take it from there.
But still excited....
Tuesday, June 9, 2009
in the waiting room
Chatted to others in the radiation waiting room today. First time. Think it was a comment about the traffic which started it. This lovely bouncy older lady said it was if no-one was on the roads, she had got here so quickly; I responded how I had been stuck in a jam cos of a robot (traffic light) not working and then we started chatting.
She had also had breast cancer - i kept staring at her yellow/blonde hair but it looked like her own, or was it a wig? - but had had eight chemo sessions as opposed to my four. And her last four were not the AC chemo I had had but something more radical - as a result, she had lost one thumb nail (she showed me where it was growing back), two of her toenails, had temporarily lost some of her hearing - gathered when she mentioned how even her daughter sounded differently on the phone that that had upset her a lot - and still had little to no sensation on her fingertips and her toes - all walking felt it was on sand, she said.
Fakking hell. I had almost had one split nail but it never did break into half and apart from slighly sore arms and one purplish-veined hand, have no permanent effects of the chemo.
And I had no surgery. Felt really guilty when I said that. I must be one of the view people who had breast cancer who did not need surgery.
I am lucky.
Which is not to say am not miserable. But that is not to do with my health but the damn workplace. Am sooooo tired but only when I am there. Funny that.
She had also had breast cancer - i kept staring at her yellow/blonde hair but it looked like her own, or was it a wig? - but had had eight chemo sessions as opposed to my four. And her last four were not the AC chemo I had had but something more radical - as a result, she had lost one thumb nail (she showed me where it was growing back), two of her toenails, had temporarily lost some of her hearing - gathered when she mentioned how even her daughter sounded differently on the phone that that had upset her a lot - and still had little to no sensation on her fingertips and her toes - all walking felt it was on sand, she said.
Fakking hell. I had almost had one split nail but it never did break into half and apart from slighly sore arms and one purplish-veined hand, have no permanent effects of the chemo.
And I had no surgery. Felt really guilty when I said that. I must be one of the view people who had breast cancer who did not need surgery.
I am lucky.
Which is not to say am not miserable. But that is not to do with my health but the damn workplace. Am sooooo tired but only when I am there. Funny that.
Monday, June 8, 2009
relief!!!!
Now I know that an excessive use of exclamation marks is so not cool but hell, I deserve the three I have pasted after "relief" in the title here.
I feel relief!!! And another !!!
Have spent the last week hassled cos I was swollen in the area of my collarbone. Cancer there would be worse than the cancer I had. Doctor said she would monitor said. She did. And today sent me off for a scan. Said it was highly unlikely but could be cancer (The Tango Man had said the radiation might not work and then I would need surgery, or, she said, it could be a clot. Before I vomited all over her desk, I asked what a clot would mean and she said very matter-of-factly "anti-coagulating medication". She also said something about swelling there being unusual.
Oh well. Lying there on the bed in the darkened room (at Morningside Clinic) waiting for the doctor to come do the ultrasound scan was not my favourite time. Neither was last night when I tried to think about what it would mean to have cancer again and try as I might, could not picture myself going for chemo again. Needless to say, not my best night.
Well thank God and whoever else is out there looking out for me, I have neither a clot nor a tumour. He saw two lymph nodes but he said they are normal and that if I scanned him, he would have them. On the right side, which he was not asked to scan, he found one lymph node, also normal. On the left axillary, below my armpit where I had had two cancerous lymph nodes, there was nothing.
"Let's check your thyroid," he said inexplicably, and then said I had had an infection there in the past and it was not working properly. "Oh, I know," I said, unconcerned and with a big smile on my face, "I have had huge thryoid problems in the past". We briefly discussed my medication then he asked if I had had it irradiated. No, I replied, it destroyed itself.
Find it fascinating that he could see my thryoid was fakked. But that is nothing. The daily 0.5g of eltroxin I take daily sorts that out. For now so happy that I can continue on my path of getting better.
I feel relief!!! And another !!!
Have spent the last week hassled cos I was swollen in the area of my collarbone. Cancer there would be worse than the cancer I had. Doctor said she would monitor said. She did. And today sent me off for a scan. Said it was highly unlikely but could be cancer (The Tango Man had said the radiation might not work and then I would need surgery, or, she said, it could be a clot. Before I vomited all over her desk, I asked what a clot would mean and she said very matter-of-factly "anti-coagulating medication". She also said something about swelling there being unusual.
Oh well. Lying there on the bed in the darkened room (at Morningside Clinic) waiting for the doctor to come do the ultrasound scan was not my favourite time. Neither was last night when I tried to think about what it would mean to have cancer again and try as I might, could not picture myself going for chemo again. Needless to say, not my best night.
Well thank God and whoever else is out there looking out for me, I have neither a clot nor a tumour. He saw two lymph nodes but he said they are normal and that if I scanned him, he would have them. On the right side, which he was not asked to scan, he found one lymph node, also normal. On the left axillary, below my armpit where I had had two cancerous lymph nodes, there was nothing.
"Let's check your thyroid," he said inexplicably, and then said I had had an infection there in the past and it was not working properly. "Oh, I know," I said, unconcerned and with a big smile on my face, "I have had huge thryoid problems in the past". We briefly discussed my medication then he asked if I had had it irradiated. No, I replied, it destroyed itself.
Find it fascinating that he could see my thryoid was fakked. But that is nothing. The daily 0.5g of eltroxin I take daily sorts that out. For now so happy that I can continue on my path of getting better.
Sunday, June 7, 2009
did not realise my anger
Went to this breast cancer charity do this morning. Was dreading it. And could not really understand why I did not want to go. But now I do.
Firstly, as much as it does consume a lot of my life, do not want to spend my Sunday morning focussing on breast cancer. But even more so, when I got there, realised how angry I am. And then the first speaker got up and spoke about the need to examine your breasts. Big deal. Would not have helped me. I had a mammogram and scan and was given the all-clear, until less than two months later I found a lump below my armpit.
I am angry because I do not want to hear the standard stuff of how it's important to go for regular mammograms and scans, eat healthily - lots of oily fish (which I often ate three times a day), drink green tea (which I did and still do daily, barring the time I had chemo and swopped to fennel tea).
The second speaker was a radiologist who spoke about how it isn't so clean cut, so obvious, so clear and then the third speaker spoke about genetics and having the gene for breast cancer (as far as I know, I don't). Interesting. My sister in Cape Town was advised not to go for genetic counselling by a doctor as he said it will just drive her crazy as she will spend her entire life worrying about getting cancer.
Anyway, got over the event and it was ok.
Also, think I am a little resentful - but I should have spoken to them about it, or still speak to them about it - about the lack of support groups around at the oncology centre. Guess I could contact them but why does the oncology centre not recommend/endorse them? There was a buddy from the Bosom Buddies suport group there the first day I went for chemo and I realise now how that brief chat helped me with my entire chemo experience as she provided invaluable, practical advice. Maybe will go to their next meeting.
Also kinda anxious - trying not to be - re the swelling on my neck. Doctor felt it and said it was soft but if it did not go away, might have to go for a scan. It is still swollen. Just praying that it is just swelling of the lymph from the radiation, like my left breast is swollen, a typical reaction.
Firstly, as much as it does consume a lot of my life, do not want to spend my Sunday morning focussing on breast cancer. But even more so, when I got there, realised how angry I am. And then the first speaker got up and spoke about the need to examine your breasts. Big deal. Would not have helped me. I had a mammogram and scan and was given the all-clear, until less than two months later I found a lump below my armpit.
I am angry because I do not want to hear the standard stuff of how it's important to go for regular mammograms and scans, eat healthily - lots of oily fish (which I often ate three times a day), drink green tea (which I did and still do daily, barring the time I had chemo and swopped to fennel tea).
The second speaker was a radiologist who spoke about how it isn't so clean cut, so obvious, so clear and then the third speaker spoke about genetics and having the gene for breast cancer (as far as I know, I don't). Interesting. My sister in Cape Town was advised not to go for genetic counselling by a doctor as he said it will just drive her crazy as she will spend her entire life worrying about getting cancer.
Anyway, got over the event and it was ok.
Also, think I am a little resentful - but I should have spoken to them about it, or still speak to them about it - about the lack of support groups around at the oncology centre. Guess I could contact them but why does the oncology centre not recommend/endorse them? There was a buddy from the Bosom Buddies suport group there the first day I went for chemo and I realise now how that brief chat helped me with my entire chemo experience as she provided invaluable, practical advice. Maybe will go to their next meeting.
Also kinda anxious - trying not to be - re the swelling on my neck. Doctor felt it and said it was soft but if it did not go away, might have to go for a scan. It is still swollen. Just praying that it is just swelling of the lymph from the radiation, like my left breast is swollen, a typical reaction.
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Saturday, June 6, 2009
arty saturday
Ku ma oda by Stary Mwaba
Karin Preller
Braam Kruger
Went to three art exhibitions today. The first was karin preller at artscape gallery along the strip in Rosebank/Parkwood where I eyed this painting of a suburban house which reminded me of Bellville where I grew up and wouldn't have minded buying but it cost R7400 and could not afford it.
Then popped into gallery momo to see stary mwaba's exhibition which I heard was brilliant, the best in Joburg at the moment, but it didn't move me. And the work is expensive - some R65 000 and so on, but many were sold. Owner Monna Mokwena clearly knows the right people, has the right clientele.
Then popped in, a little later, to see braam kruger's exhibition at the pink church in Melville. Think I liked the buiding even more than the art although seeing the car with the "hedonist" numberplate on his colourful van - on the side, nogal - parked outside the church, made me feel pretty sad. Used to see him around often.
Thursday, June 4, 2009
i want, I vant, a vant, avant car guard
avant car guard - from their website avantcarguard.com - these are the ones i don't like but cannot source images of what i do like
Went to avant car guard who they are , and what they create - these i don't like launch tonight. Had heard so much about them, and you know what, really liked their stuff, if not all of it. But liked the video and the untitled work with all the writing and lots of fucks. Give me R7400 and I'll buy it.
What was also interesting was you had to buy for your own booze and even (mineral) water at Brodie/Stevenson gallery - ok it was dirt cheap - the bucks going to some artist travel fund or some such; and the people - from when I was there, mostly 30 to 40-something intellectuals, rather than the 20-something the artists themselves are (or so I believe). Maybe they arrived later.
Oh this is a good article on them, even if it is written by the sister of the gallery owner..... tsssk!! eina!!!good article on avant car guard and their new exhibition
the recession - oh, please pass the Lindt
South Africa has barely been touched by the recession. Hell, we were officially in it only last week. Ok, I know the motor industry has been affected and cars are being repossessed but for me, it has meant the chance for bargains as all my favourite stores are going on sale. Alright, alright, admittedly got no more bucks to take advantage of Hip Hop's 25% off all black items this week check out hip hop fashion's site- well cos last week took advantage of the 25% off skirts, denims and something-else-I-have-forgotten-the-details-of when I went to the Hyde Park store and bought a lovely skirt and top, only the former being on sale.
But my big contribution to the recession was cancelling my DStv (pay TV)decorder's care contract. Hell, if it breaks, I'll buy a new one. Trouble is, thinks I, merrily munching Lindt 70% chocolate, my saving is only R20 a month. But that's R240 a year.
But my big contribution to the recession was cancelling my DStv (pay TV)decorder's care contract. Hell, if it breaks, I'll buy a new one. Trouble is, thinks I, merrily munching Lindt 70% chocolate, my saving is only R20 a month. But that's R240 a year.
Wednesday, June 3, 2009
why vitamins are a no-no
When I started radiation two and a half weeks ago - if all goes well, I am half way through my 25 sessions today - I was told "no vitamins". No hassle, I thought, I don't take vitamins; before I got cancer, I ate very healthily and despite all the claims that our food lacks nutrients, felt vitamins are a waste as the excess is merely elimated by the body.
Anyway, I merrily went about things, until I went to a fashion launch. About to pick up a cocktail, I stopped in mid-aim. "Vitamin-enriched water!" shrieked the sign next to the enticing looking drinks. Oh no, not for me, I thought.
Then on Monday, while shopping for aqueous cream, I stared at my usual one and again, stopped in mid-aim, this time simultaneously dialling the oncologu centre. True enough, I was using the wrong acqueous cream for there on the outside of the jar it stated clearly: "Vitamin enriched".
Asked them yesterday why vitamins were verboten (have since bought two different kinds of cream and, at their suggestion, schlepped them along to the oncology centre for approval). Anyway, as I was saying, asked them why vitamins are verboten and got a simple, straight-forward succinct answer: "Cos vitamins tend to heal and we want to destroy". Couldn 't have put it better myself.
Anyway, I merrily went about things, until I went to a fashion launch. About to pick up a cocktail, I stopped in mid-aim. "Vitamin-enriched water!" shrieked the sign next to the enticing looking drinks. Oh no, not for me, I thought.
Then on Monday, while shopping for aqueous cream, I stared at my usual one and again, stopped in mid-aim, this time simultaneously dialling the oncologu centre. True enough, I was using the wrong acqueous cream for there on the outside of the jar it stated clearly: "Vitamin enriched".
Asked them yesterday why vitamins were verboten (have since bought two different kinds of cream and, at their suggestion, schlepped them along to the oncology centre for approval). Anyway, as I was saying, asked them why vitamins are verboten and got a simple, straight-forward succinct answer: "Cos vitamins tend to heal and we want to destroy". Couldn 't have put it better myself.
Tuesday, June 2, 2009
Made it back to gym
When I was first diagnosed with breast cancer (January 15 2009) and then after three weeks of tests and many doctors and as many opinions, I finally choose The Tango Man to be my medical oncologist, I was banned from gym. That was it. The chemo I was going to start with could affect my heart, then the radiation would compound it, followed by herceptin which is also a risk for the heart.
Now last week or so the radiation oncologist said I must go back to gym. But cannot get too out of breath so that I cannot talk and must not get so sweaty that my gym clothes chafe against my skin (the radiated upper left chest, throat and back area).
Well today was the day. Had decided that the only way to gym under such stringent conditions - well, the safest way really - was to do so under the skillful eye of a biokineticist.
Now that's all well and fine but when it came to the crunch was rather in a panic - what do I do about my still mostly hairless head? Eventually I opted for my black cotton cap(in case my hat fell off) plus a blue soft hat (my late mom's).
And I survived, even if I looked like a frummer (a religious Jew with my head covered) and even if the 30 minute appointment was the longest half hour ever. "Think I can get a 15 minute appointment?" I laughed. Had two bios with me, the main oke plus Lauren, who will be taking me, and it was almost a joke. I found everything so difficult, despite during fairly regular exercise at home (did 25 minutes this morning, for example). But then at home have focused on low-energy (had to really) plus recuperative yoga.
Felt good afterwards but decided there and then not to try to make yoga tonight. After yesterday's depressive state, had decided that had to force myself to go to yoga, even if I did not have the stamina to complete the class. But no ways can I do gym as well as yoga in one day.
Had no idea exactly how much all this treatment has taken it out of me. What I experienced at gym today was far, far more than just unfitness. It is like my body is unused to moving, to being exerted. I became tired and out of breath so easily. But I will survive and I did enjoy it.
Now last week or so the radiation oncologist said I must go back to gym. But cannot get too out of breath so that I cannot talk and must not get so sweaty that my gym clothes chafe against my skin (the radiated upper left chest, throat and back area).
Well today was the day. Had decided that the only way to gym under such stringent conditions - well, the safest way really - was to do so under the skillful eye of a biokineticist.
Now that's all well and fine but when it came to the crunch was rather in a panic - what do I do about my still mostly hairless head? Eventually I opted for my black cotton cap(in case my hat fell off) plus a blue soft hat (my late mom's).
And I survived, even if I looked like a frummer (a religious Jew with my head covered) and even if the 30 minute appointment was the longest half hour ever. "Think I can get a 15 minute appointment?" I laughed. Had two bios with me, the main oke plus Lauren, who will be taking me, and it was almost a joke. I found everything so difficult, despite during fairly regular exercise at home (did 25 minutes this morning, for example). But then at home have focused on low-energy (had to really) plus recuperative yoga.
Felt good afterwards but decided there and then not to try to make yoga tonight. After yesterday's depressive state, had decided that had to force myself to go to yoga, even if I did not have the stamina to complete the class. But no ways can I do gym as well as yoga in one day.
Had no idea exactly how much all this treatment has taken it out of me. What I experienced at gym today was far, far more than just unfitness. It is like my body is unused to moving, to being exerted. I became tired and out of breath so easily. But I will survive and I did enjoy it.
my new favourite thing
My new favourite thing is actually three things - three strands of clay beads I bought in Lesotho recently. When you run your fingers through them, they have this gentle scratchy sound and they look magnificent, all earthy and hell, dunno. And at R14 each, a steal.
The other new thing I really like is a multi-coloured, candy striped kikoi, or cotton sarong from Kenya, see gallery of kikois, I bought at Cape Town airport.
At last I can enjoy things again, after yesterday, when I was a strung-out wreck.
Now apologies to my radiation oncologist. Okay the swelling around my collarbone might not go down and I might need a scan next week but really there is nothing I can do about it now. But last night I was super upset because I had told her my throat was sore, that it hurt when I swallowed food and she had done nothing about it.
Well, walked in this morning and was suprised when they did not take me during the first gap between patients. (I am usually early for my daily dose of radiation and get taken immediately, as found out they often double-book patients, being able to fit in two during a 15 minute appointment/session.)
Then it was explained: my treatment was being changed, in order to take away some of the focus on my throat. Hoorah!! The doctor had heard me.
Ate soups and yoghurt all day but managed some smoked snoek (also bought at Cape Town airport)this morning and evening, eating it with apricot jam read how to braai snoek smearing it with apricot jam in the true Western Cape - or is it boere? - style. Did try some Lindt 70% but that kinda hurt. Pity.
The other new thing I really like is a multi-coloured, candy striped kikoi, or cotton sarong from Kenya, see gallery of kikois, I bought at Cape Town airport.
At last I can enjoy things again, after yesterday, when I was a strung-out wreck.
Now apologies to my radiation oncologist. Okay the swelling around my collarbone might not go down and I might need a scan next week but really there is nothing I can do about it now. But last night I was super upset because I had told her my throat was sore, that it hurt when I swallowed food and she had done nothing about it.
Well, walked in this morning and was suprised when they did not take me during the first gap between patients. (I am usually early for my daily dose of radiation and get taken immediately, as found out they often double-book patients, being able to fit in two during a 15 minute appointment/session.)
Then it was explained: my treatment was being changed, in order to take away some of the focus on my throat. Hoorah!! The doctor had heard me.
Ate soups and yoghurt all day but managed some smoked snoek (also bought at Cape Town airport)this morning and evening, eating it with apricot jam read how to braai snoek smearing it with apricot jam in the true Western Cape - or is it boere? - style. Did try some Lindt 70% but that kinda hurt. Pity.
Monday, June 1, 2009
hi ho, hi ho, it's.....
Mmm.... not the best of days but eventually feeling ok to write. Was angry with doctor today. She was angry because I mentioned something about lying down in the bath and apparently that is not allowed. But I was not told.
Fact is, have been feeling I have been told very little about this cancer and what to expect. Managed with the chemo but with radiation, where there are things one can do and not do, hell, how was I to know one cannot lie down in the bath cos it affects one's skin?
Thinking about it, I only knew and understand the chemo immune-compromised week and what to do and not do cos there was a woman from a support group at my first session. Merely handing out sheets of paper, as the oncology centre did with the chemo, or a booklet, as they did with radiation, is not sufficient. What happens if one has poor comprehension skills? I don't but I have still gone wrong.
The doctor was insistant that the booklet said not to lie down in the bath, but I showed her that it did not. Either way, came back to work and re-read the booklet to make sure am following all the rest of the intructions.
Then got upset cos my throat is sore cannot swallow food - and she forgot to look at it. I know it makes me sound silly but I am hardly passive yet she had marched out before I remembered she had not looked at my throat as promised.
Ok, was another problem too. The area around my collarbone is swollen again. Had it scanned before and it was fine. She marched off to get my file from The Tango Man to see what he had said about it. Said she would monitor it and I might need another scan. But said it was soft - ie nothing seemingly there - but swollen.
Ho hum. And as for work, which took away the bulk of my job cos advertisers wanted the colour page it was on.. did not make my day much better.
But relaxed now. If sleepy. G'night.
Fact is, have been feeling I have been told very little about this cancer and what to expect. Managed with the chemo but with radiation, where there are things one can do and not do, hell, how was I to know one cannot lie down in the bath cos it affects one's skin?
Thinking about it, I only knew and understand the chemo immune-compromised week and what to do and not do cos there was a woman from a support group at my first session. Merely handing out sheets of paper, as the oncology centre did with the chemo, or a booklet, as they did with radiation, is not sufficient. What happens if one has poor comprehension skills? I don't but I have still gone wrong.
The doctor was insistant that the booklet said not to lie down in the bath, but I showed her that it did not. Either way, came back to work and re-read the booklet to make sure am following all the rest of the intructions.
Then got upset cos my throat is sore cannot swallow food - and she forgot to look at it. I know it makes me sound silly but I am hardly passive yet she had marched out before I remembered she had not looked at my throat as promised.
Ok, was another problem too. The area around my collarbone is swollen again. Had it scanned before and it was fine. She marched off to get my file from The Tango Man to see what he had said about it. Said she would monitor it and I might need another scan. But said it was soft - ie nothing seemingly there - but swollen.
Ho hum. And as for work, which took away the bulk of my job cos advertisers wanted the colour page it was on.. did not make my day much better.
But relaxed now. If sleepy. G'night.
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