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.
Monday, October 26, 2009
no mammogram and scan after all
After making myself hysterical with fear - although woke up this morning and said: "Whatever happens I will deal with it" (does one have a choice, really?) - I did not have to have a mammogram or scan after all.
When The Tango Man had asked me when my last mammogram was, I said "October", forgetting that when I found the lump below my armpit on Christmas Eve last year, I then had a mammogram plus a scan in January (there were no doctors in town to do one before).
So when I went there today, was called in to my appointment and then told that it was too early. It either had to be a year since my last one and now was three months too early, or six months since I finished radiotherapy. Now no clue when I finished that but do know, cos I checked via this blog yesterday, that I finished chemo on April 14, that is, six months ago so it's a far shorter time since I had radiation.
The woman who was gonna do the mammogram said she had had breast cancer 23 years ago and had had a masetcomy. By the same surgeon I had seen but who had decided not to operate on me.
"Didn't you have surgery?' she must have asked me about three times. And I explained that I did not have a primary tumour.
When The Tango Man had asked me when my last mammogram was, I said "October", forgetting that when I found the lump below my armpit on Christmas Eve last year, I then had a mammogram plus a scan in January (there were no doctors in town to do one before).
So when I went there today, was called in to my appointment and then told that it was too early. It either had to be a year since my last one and now was three months too early, or six months since I finished radiotherapy. Now no clue when I finished that but do know, cos I checked via this blog yesterday, that I finished chemo on April 14, that is, six months ago so it's a far shorter time since I had radiation.
The woman who was gonna do the mammogram said she had had breast cancer 23 years ago and had had a masetcomy. By the same surgeon I had seen but who had decided not to operate on me.
"Didn't you have surgery?' she must have asked me about three times. And I explained that I did not have a primary tumour.
Sunday, October 25, 2009
first haircut since chemo
http://www.google.com/support/forum/p/blogger/thread?tid=306372cce44213da&hl=en
Anyway, that pic shows what my hair looked like before I had it cut yesterday. Had to look it up on this blog but last had chemo on Tuesday April 14. That means it is now just over six months. So that's how long it took to have my hair grow out long enough to have it cut. I wanted to cut it earlier but Carlos, my hairdresser, said it was too short.
Now Erica, the head nurse at the oncology centre, has advised me not to tint it while on herceptin treatment. Initially was told not to tint it for six months after chemo but she said it's best not to do it while on herceptin. She said it would make my hair brittle. I trust her. She is the one with the experience. Pity because I would like to brighten it up. But there are bigger issues. Like going for a mammogram and scan tomorrow. My first mammogram since the one I had in October last year and was given the all-clear before finding a lump below my armpit just under two months later. (Also having herceptin tomorrow.)
And another issue is the fact that am suffering from fatigue. Went to a party on a farm in the Magaliesburg area yesterday. Drove there and back and afterwards, in a restaurant last night, almost fell asleep. One cup of coffee and I was fine, but feeling far more fatigue in the last three weeks. A heavy day at the office and I feel wacked. Think it's the tamoxifen.
Thursday, October 22, 2009
chemo curls
soooo irritated cos got a pic of my curly, curly hair and for some insane, illogical reason Blogger no longer allows me to paste a pic here. Maybe I will be able to another time.
Suffice to say my hair has now grown out so much since the chemo - and is so, so, so curly -that I am now having it cut on Saturday.
Love what someone said to me at work today. I was talking about something or other and he said: "It's enough to make my hair curly!"
So that's my new saying.
Suffice to say my hair has now grown out so much since the chemo - and is so, so, so curly -that I am now having it cut on Saturday.
Love what someone said to me at work today. I was talking about something or other and he said: "It's enough to make my hair curly!"
So that's my new saying.
Tuesday, October 20, 2009
a bit miff
Not feeling elated today but, for once, it has nothing to do with cancer or illness or side effects or anything like that - which is probably a really good sign,and so I am smiling again. Am sick of illness.
Kinda pissed off with work, with my career, with lack of opportunities, with my lack of entrepreneurship, with the fact that from those at the meeting today, I was the only one not invited to tonight's big work function. OK, there have been years in the past that I was not invited but if I am good enough to present the 'diary' for a major section of work, why am I not good enough to be invited? I guess when they drew up the invite list I was not in my present position, so that is probably why I was left out.
And financially feel left out too. Mentioned by car expenses to someone today, that I spent over R10 000 on it last month, adding "and my car is only four years old", and they exclaimed, "but you should never keep a car that long!" - as if I could afford to buy a new car (plus my car is an el-cheapo).
So now that I have given up therapy (my medical aid for therapy ran out and I was becoming resentful of it cos I did not feel it was helping me), I feel today that maybe I need to go back - with the proviso that I do not discuss cancer, sickness, side-effects and other moans.
Oh dear.
Meanwhile, sipping an ultra-dry shiraz sparkling wine which I think needs berries in it (the frozen ones, which u just drop into the glass) to make it more palatable.
Kinda pissed off with work, with my career, with lack of opportunities, with my lack of entrepreneurship, with the fact that from those at the meeting today, I was the only one not invited to tonight's big work function. OK, there have been years in the past that I was not invited but if I am good enough to present the 'diary' for a major section of work, why am I not good enough to be invited? I guess when they drew up the invite list I was not in my present position, so that is probably why I was left out.
And financially feel left out too. Mentioned by car expenses to someone today, that I spent over R10 000 on it last month, adding "and my car is only four years old", and they exclaimed, "but you should never keep a car that long!" - as if I could afford to buy a new car (plus my car is an el-cheapo).
So now that I have given up therapy (my medical aid for therapy ran out and I was becoming resentful of it cos I did not feel it was helping me), I feel today that maybe I need to go back - with the proviso that I do not discuss cancer, sickness, side-effects and other moans.
Oh dear.
Meanwhile, sipping an ultra-dry shiraz sparkling wine which I think needs berries in it (the frozen ones, which u just drop into the glass) to make it more palatable.
Monday, October 19, 2009
I am purrrrrfect!!!
So chuffed. Went to see the physician today who monitors my thyroid and cholesterol. Actually he is an endocronologist, a brilliant one. Really. And I was perfect! Well, as perfect as one can be. Yes, my cholesterol was 5.3 when normal is 5 but last year (before cancer diagnosis, incidentally) it was also 5.3. And yes, my triglycerides are above normal but are less than last year and my good cholesterol is even better than last year's count, despite doing less exercise (cos of cancer treatment and being restricted to 15 min of cardio a time), so I am very chuffed.
Best of all, the doctor made me feel terrific. And he is known to be a tyrant. Really. (When I told my biokineticist I was seeing him today and was scared, she thought it was because he is so stern.)
Afterwards he said to me: "You walk in here and as you're sitting down say, by 'by the way, I've had cancer'." He made me feel that i was amazing, that since the last time he had seen me I have been diagnosed with cancer, had treatment yet was now fine. And then my blood pressure was so low - 108/80 - that he said: "Like a chicken's!"
He was incredulous, in a positive way, and I felt fantastic.
Good to know I am healthy.
Now pray that next week's mammogram and scan goes ok.
Best of all, the doctor made me feel terrific. And he is known to be a tyrant. Really. (When I told my biokineticist I was seeing him today and was scared, she thought it was because he is so stern.)
Afterwards he said to me: "You walk in here and as you're sitting down say, by 'by the way, I've had cancer'." He made me feel that i was amazing, that since the last time he had seen me I have been diagnosed with cancer, had treatment yet was now fine. And then my blood pressure was so low - 108/80 - that he said: "Like a chicken's!"
He was incredulous, in a positive way, and I felt fantastic.
Good to know I am healthy.
Now pray that next week's mammogram and scan goes ok.
Sunday, October 18, 2009
seeing the thyroid doctor tomorrow
Cannot believe that I haven't written for about a week. But been super busy, going out a lot. In fact, it's after 10pm now on a Sunday night and still have to do the lymph massage, pack my clothes for tomorrow and have an early start with bio.
Stopped hassling about the 1cm difference in my arm. In fact, have been feeling ok.
But now getting a teeny bit anxious about tomorrow. Seeing the thyroid doctor at 1pm. About 10 years ago was very sick with an overactive thyroid, Graves Disease, which later changed to being underactive. I was extremely sick for five and a half months, which in many ways was worse than cancer in that I never, for one second, felt ok during that period. I was dizzy, felt shaky, hot, and my weight was totally out of control. In one of those weeks, I gained 4kg without eating more and suddenly all my clothes were too tight. Then I would eat salads and gain weight, eat a lot and lose weight and so on. Then I managed to see the doctor I am seeing tomorrow (not so easy as he no longer sees thryoid patients, in fact heard he is now not seeing any new patients as he is focusing on his diabetes research) and within a month was about 92% better. Then it took a couple more months before my thyroid was stable and I could go on diet and try to lose the weight.
I never went back to the weight I was before my thyroid went out of control.
Anyway, after a few years without needing any medication, my thyroid became underactive. Then my cholesterol went crazy and now that is why I am a little anxious about my appointment tomorrow. Am tired of having health hassles and want my cholesterol and thyroid to be ok. Pretty sure my thyroid is ok. Just hope my cholesterol is also ok. Am on two different kinds of medication for it but it took about a year for the correct dosage to be worked out. Eventually - last time I saw the doctor - he admitted that the cholesterol was probably caused by the thyroid (that is what it says on site after site on the internet).
Stopped hassling about the 1cm difference in my arm. In fact, have been feeling ok.
But now getting a teeny bit anxious about tomorrow. Seeing the thyroid doctor at 1pm. About 10 years ago was very sick with an overactive thyroid, Graves Disease, which later changed to being underactive. I was extremely sick for five and a half months, which in many ways was worse than cancer in that I never, for one second, felt ok during that period. I was dizzy, felt shaky, hot, and my weight was totally out of control. In one of those weeks, I gained 4kg without eating more and suddenly all my clothes were too tight. Then I would eat salads and gain weight, eat a lot and lose weight and so on. Then I managed to see the doctor I am seeing tomorrow (not so easy as he no longer sees thryoid patients, in fact heard he is now not seeing any new patients as he is focusing on his diabetes research) and within a month was about 92% better. Then it took a couple more months before my thyroid was stable and I could go on diet and try to lose the weight.
I never went back to the weight I was before my thyroid went out of control.
Anyway, after a few years without needing any medication, my thyroid became underactive. Then my cholesterol went crazy and now that is why I am a little anxious about my appointment tomorrow. Am tired of having health hassles and want my cholesterol and thyroid to be ok. Pretty sure my thyroid is ok. Just hope my cholesterol is also ok. Am on two different kinds of medication for it but it took about a year for the correct dosage to be worked out. Eventually - last time I saw the doctor - he admitted that the cholesterol was probably caused by the thyroid (that is what it says on site after site on the internet).
Monday, October 12, 2009
la la la la la la la la lymph
Saw The Lymph Lady today. Says my arm is better than last week. Also measured my unaffected arm to compare it with the affected one. Well, above the elbow my left arm is 1cm more than the same area on the right arm. That is a big difference. Funnily enough, there were some parts where my right arm was more than my left - cos it's the dominant arm, she said.
Not charmed that a 1 cm difference is regarded as doing brilliantly. Doing so brilliantly in fact that I now need see her only every second week, as opposed to every week.
I suppose I should be grateful I don't have lymphoedema and that the swelling is relatively minor.
Not charmed that a 1 cm difference is regarded as doing brilliantly. Doing so brilliantly in fact that I now need see her only every second week, as opposed to every week.
I suppose I should be grateful I don't have lymphoedema and that the swelling is relatively minor.
Thursday, October 8, 2009
mammograms and lympedema
(By the way, here in South Africa we spell it lymphoedema; in the US it is spelt lymphedema and I am spelling it like that in this posting so that it is picked up in internet searches.)
I was worried. Being high risk for lymphedema following my radiation for breast cancer (today at my appointment with the expert my arm was slightly up in two places above the elbow, but neither measurement more than it had been at some point in the past), I have been told for eg not to wear underwire bras and not to have my blood pressure taken on the affected arm etc.
So how was I going to have a mammogram, which I am scheduled to have in about two weeks' time?
It's fine, The Lymph Lady assured me. It is mainly the arm I need to concern myself about, although a major injury to my chest/breast/neck area could affect my arm. Unless one had lymphedema in the breast.
So a mammogram will be fine. Nothing to worry about. Mmmm.. wonder why no underwire bras though. Must ask.
And we chatted about sun block, cos I am concerned that I have gone to so much trouble to find non alkaline soaps and creams for the affected area - so that bacterial infections cannot thrive in the lymph-affected area, so how can I then slap on alkaline sunblock? Yet I have been told by both the radiation gals and The Lymph Lady to use sunblock.
She told me that it was not necessary to use sunblock on my arm unless I was going to be outside. That is, not for general in and out going about my business. (SA is hot and I use sunblock on my face and neck every single day, summer and winter.) But it sounds like I need to use it on my neck and upper chest area, the part that is still so damn itchy following radiation, as if it gets sunburnt, it will stay red forever. The pigment will change.
I was worried. Being high risk for lymphedema following my radiation for breast cancer (today at my appointment with the expert my arm was slightly up in two places above the elbow, but neither measurement more than it had been at some point in the past), I have been told for eg not to wear underwire bras and not to have my blood pressure taken on the affected arm etc.
So how was I going to have a mammogram, which I am scheduled to have in about two weeks' time?
It's fine, The Lymph Lady assured me. It is mainly the arm I need to concern myself about, although a major injury to my chest/breast/neck area could affect my arm. Unless one had lymphedema in the breast.
So a mammogram will be fine. Nothing to worry about. Mmmm.. wonder why no underwire bras though. Must ask.
And we chatted about sun block, cos I am concerned that I have gone to so much trouble to find non alkaline soaps and creams for the affected area - so that bacterial infections cannot thrive in the lymph-affected area, so how can I then slap on alkaline sunblock? Yet I have been told by both the radiation gals and The Lymph Lady to use sunblock.
She told me that it was not necessary to use sunblock on my arm unless I was going to be outside. That is, not for general in and out going about my business. (SA is hot and I use sunblock on my face and neck every single day, summer and winter.) But it sounds like I need to use it on my neck and upper chest area, the part that is still so damn itchy following radiation, as if it gets sunburnt, it will stay red forever. The pigment will change.
side-effects and The Tango Man
Almost every time I have had a side-effect since beginning treatment for breast cancer which had spread to the lymph, it has been pooh-poohed.
When I had chemo - to which, thank God I had a complete response to only four sessions and the cancer disappeared - the biggest problem was my stomach. I would wake up at about 6am or a little later clutching my stomach in agony. Then I would start rushing to the loo, with radical diarrhea. I lived off Immodium but was told I could not overdose on it. Sometimes I would get to work only at about 11am, as I would wait for my stomach to settle.
But, said The Tango Man when I presented this problem to him, this reaction was not possible. My chemo was not the type which caused this reaction, and neither had I had enough of it to cause this response.
Eventually the problem went away. Not sure when it did (cannot remember now)but I did also start taking probiotics. However, despite what The Tango Man said, I do believe the chemo caused that stomach reaction.
When I saw him on Monday, he said it was impossible I develop mouth ulcers from Herceptin, yet every time I have had the treatment, a few days later there are the mouth ulcers.
He also said that it was too early to have reactions to the tamoxifen; I haven't been on it for long enough but lo and behold, I have had hot flushes and in the last few weeks, stiffening fingers on my left hand.
Then today, when I saw The Lymph Lady, I was telling her this when she laughed and said The Tango Man had recently told one of her clients, a woman whose one breast is noticeably swollen, that there was nothing wrong - her breasts were just big and he did not know why she was getting lymph treatment.
The Lymph Lady said everybody is different and reacts differently to treatment so I am going to continue believing in my reactions despite what The Tango Man is. Anyway, I do respect him and think he is very skilled and a brilliant doctor.
Now just trying to do what I am pretty sure I wrote last night. I am trying to remember that I am perfect. That 'perfect' means "no cancer" and anything else, no matter how discomforting, is minor.
When I had chemo - to which, thank God I had a complete response to only four sessions and the cancer disappeared - the biggest problem was my stomach. I would wake up at about 6am or a little later clutching my stomach in agony. Then I would start rushing to the loo, with radical diarrhea. I lived off Immodium but was told I could not overdose on it. Sometimes I would get to work only at about 11am, as I would wait for my stomach to settle.
But, said The Tango Man when I presented this problem to him, this reaction was not possible. My chemo was not the type which caused this reaction, and neither had I had enough of it to cause this response.
Eventually the problem went away. Not sure when it did (cannot remember now)but I did also start taking probiotics. However, despite what The Tango Man said, I do believe the chemo caused that stomach reaction.
When I saw him on Monday, he said it was impossible I develop mouth ulcers from Herceptin, yet every time I have had the treatment, a few days later there are the mouth ulcers.
He also said that it was too early to have reactions to the tamoxifen; I haven't been on it for long enough but lo and behold, I have had hot flushes and in the last few weeks, stiffening fingers on my left hand.
Then today, when I saw The Lymph Lady, I was telling her this when she laughed and said The Tango Man had recently told one of her clients, a woman whose one breast is noticeably swollen, that there was nothing wrong - her breasts were just big and he did not know why she was getting lymph treatment.
The Lymph Lady said everybody is different and reacts differently to treatment so I am going to continue believing in my reactions despite what The Tango Man is. Anyway, I do respect him and think he is very skilled and a brilliant doctor.
Now just trying to do what I am pretty sure I wrote last night. I am trying to remember that I am perfect. That 'perfect' means "no cancer" and anything else, no matter how discomforting, is minor.
Wednesday, October 7, 2009
think it's about being assertive
I have been thinking about what i just wrote. Don't think it's anger. Might be something allied to it but it's not anger. It's not deep inside but linked to situations. And basically I have become more assertive. More 'fak you'. No time, no energy for bullshit. Or niceties.
Mmmm... dunno I am describing it properly. But I care less than ever what people think and say more and more what I think. Eg telling Shanthini and Nicky that they are silly to work way beyond their prearranged time slots. "What can we do?" says Shanthini. "Schedule an appointment for 6.30pm. That way you have to leave at 6pm,"I said. "We are all prepared to work late when necessary but if you are constantly working later then there is something wrong."
And the truth is that I am unimpressed with their lack of assertiveness. With how they allow themselves to be walked over. "OH, we are both going to get divorced," said Shanthini flippantly - she is madly in love and only just got married so the comment was a joke.
What is worrying, however, is why I care. But went down to where they work to collect my free movie tickets (we get two tickets each month at work cos the company owns the distribution company, such a brilliant one that they still cannot work out who works in which section when things change and so send tickets to people's former work sections), saw them working and commented. I should just shut up I guess. Would not be blogging this if not trying to explain how i have changed.
Mmmm... dunno I am describing it properly. But I care less than ever what people think and say more and more what I think. Eg telling Shanthini and Nicky that they are silly to work way beyond their prearranged time slots. "What can we do?" says Shanthini. "Schedule an appointment for 6.30pm. That way you have to leave at 6pm,"I said. "We are all prepared to work late when necessary but if you are constantly working later then there is something wrong."
And the truth is that I am unimpressed with their lack of assertiveness. With how they allow themselves to be walked over. "OH, we are both going to get divorced," said Shanthini flippantly - she is madly in love and only just got married so the comment was a joke.
What is worrying, however, is why I care. But went down to where they work to collect my free movie tickets (we get two tickets each month at work cos the company owns the distribution company, such a brilliant one that they still cannot work out who works in which section when things change and so send tickets to people's former work sections), saw them working and commented. I should just shut up I guess. Would not be blogging this if not trying to explain how i have changed.
cannot believe it but cancer has changed me
I find this hard to believe but have noticed that I have changed. Think it's from the shock of the diagnosis when you're feeling on top of the world, then gritting your teeth through the treatment and now dealing with daily niggles of side-effects of the preventative treatment (in my case Herceptin and Tamoxifen).
Well what has happened that I sometimes feel angry. It is always in public. But not really angry as in feeling cross inside me but I now longer care about niceties and am far less tolerant of people's shit. If someone tells me they have been depressed, I feel nothing. It's like 'deal with it' but in a way have always been like that. It's more like at the exhibition tonight, when the stupid gallery director/whatever said: "Can you hear me?' on the inadequate mike, I said no. And at the downstairs part of the gallery (the opening was of a sculpture exhibition on the roof garden on top), I wrote in the book what i thought: that I had not realised that the late Braam Kruger's work was so kitch and self-centered. And when the exhibition curator said that the gallery had not used the sculpture garden in the five years since the gallery had been built cos they had only just realised it was there.. I mumbled something about the stupid gallery director to the stranger I had been chatting to. (The university had put a slab of concrete over an artist's work outside the gallery and this stranger felt it was a good thing - hell, the art work involved a running stream of water between sections..... stupid, said the stranger, never put energy in an artwork, never put light into an artwork....interesting point.)
Anyway, think i am more brazen than ever before. Then I also felt angry cos the university is so verkrampt (conservative) but the moment I left i no longer felt anything. It was gone. That is why I don't think it's anger really. It is just a fak you. I don't care what people think anymore.
Well what has happened that I sometimes feel angry. It is always in public. But not really angry as in feeling cross inside me but I now longer care about niceties and am far less tolerant of people's shit. If someone tells me they have been depressed, I feel nothing. It's like 'deal with it' but in a way have always been like that. It's more like at the exhibition tonight, when the stupid gallery director/whatever said: "Can you hear me?' on the inadequate mike, I said no. And at the downstairs part of the gallery (the opening was of a sculpture exhibition on the roof garden on top), I wrote in the book what i thought: that I had not realised that the late Braam Kruger's work was so kitch and self-centered. And when the exhibition curator said that the gallery had not used the sculpture garden in the five years since the gallery had been built cos they had only just realised it was there.. I mumbled something about the stupid gallery director to the stranger I had been chatting to. (The university had put a slab of concrete over an artist's work outside the gallery and this stranger felt it was a good thing - hell, the art work involved a running stream of water between sections..... stupid, said the stranger, never put energy in an artwork, never put light into an artwork....interesting point.)
Anyway, think i am more brazen than ever before. Then I also felt angry cos the university is so verkrampt (conservative) but the moment I left i no longer felt anything. It was gone. That is why I don't think it's anger really. It is just a fak you. I don't care what people think anymore.
Monday, October 5, 2009
what the tango man said
Saw my oncologist today. The Tango Man.
In answer to my questions, this is what he said (and for once, I didn't take notes but just listened):
1) My skin is still itchy from the radiation cos it keeps changing. And the radiation affected my sweat glands so that would also contribute.
2) My hair is going to stay curly. He also said I looked pretty with curls which was sweet - hell, everything other side effect/symptom is awful.
3) Must not do more than 15 minutes of cardio.
4) Wasn't think when I first saw him so why hassling re weight gain? Gained a kilogram in the past week but in terms of the weight as measured by the oncology centre, I weighed 200 grams more than last time (three months ago).
5) Have to go for a routine mammogram and scan. Last went in October last year (for a routine one - then under two months later found a lump).Terrified.
6) Said I can take four probiotics a day. (Having tummy hassles again). Said he thinks I have something wrong with my gastro-digestive tract but needn't do anything about it now while still having treatment. The mouth ulcers I get are part of that, he says.
7) Said it was too early on tamoxifen pills to get side-effects like hot flushes, but I have been getting them. Said medication can reduce the effect. But seemed to imply that wasn't a solution. I agree. Not more pills.
8) Said I have to weight up benefits of herceptin and tamoxifen vs side-effects. I said I will stick to the treatment but must admit, feel kinda down by being constantly plagued by side-effects. Felt so good when I first got diagnosed with cancer. Now the cancer has gone but I am debilitated by having to do manual lymph drainage (massage) twice a day, have stiff fingers, get hot flushes, momentary bad headaches.... and have to worry about weight gain.... and that's all I can remember now.
In answer to my questions, this is what he said (and for once, I didn't take notes but just listened):
1) My skin is still itchy from the radiation cos it keeps changing. And the radiation affected my sweat glands so that would also contribute.
2) My hair is going to stay curly. He also said I looked pretty with curls which was sweet - hell, everything other side effect/symptom is awful.
3) Must not do more than 15 minutes of cardio.
4) Wasn't think when I first saw him so why hassling re weight gain? Gained a kilogram in the past week but in terms of the weight as measured by the oncology centre, I weighed 200 grams more than last time (three months ago).
5) Have to go for a routine mammogram and scan. Last went in October last year (for a routine one - then under two months later found a lump).Terrified.
6) Said I can take four probiotics a day. (Having tummy hassles again). Said he thinks I have something wrong with my gastro-digestive tract but needn't do anything about it now while still having treatment. The mouth ulcers I get are part of that, he says.
7) Said it was too early on tamoxifen pills to get side-effects like hot flushes, but I have been getting them. Said medication can reduce the effect. But seemed to imply that wasn't a solution. I agree. Not more pills.
8) Said I have to weight up benefits of herceptin and tamoxifen vs side-effects. I said I will stick to the treatment but must admit, feel kinda down by being constantly plagued by side-effects. Felt so good when I first got diagnosed with cancer. Now the cancer has gone but I am debilitated by having to do manual lymph drainage (massage) twice a day, have stiff fingers, get hot flushes, momentary bad headaches.... and have to worry about weight gain.... and that's all I can remember now.
didn't realise i was so angry
Had herceptin today. Think it was the fourth one. Losing count. But it's not important. I still have about a year to go, every three weeks.
Anyway, while I was there one of the admin people asked who was having herceptin and could go to a lunch. The head nurse indicated me. The lunch is on Wednesday, organised by pharmaceutical company Roche.
Anyway, the head nurse told me how wonderful the company is, how they treat them, most recently to a weekend at Sun City and all the nurses from the centre went.
Well, everything was fine till I got the call from Roche later today. When they woman told me they supply/manufacture Herceptin, I got angry, saying they need to bring down the cost and that although it is expensive in the UK and Canada, it is still cheaper than here in South Africa and that ethically I did not think it was right I come to the lunch, to be treated by them.
Now I think I was rude. I told her I would come back to her. But really. The lunch is to raise money for a mobile mammgraphy unit to service the rural areas. Great. But what about herceptin? Not even middle class people can afford it. I cannot begin to afford it, what often amounts to about R10 000 a month as I have it every three weeks and each time involves a payment of about R4500-something..... each treatment costs R23000 and the medical aid pays 80%.The only reason I am having herceptin is because my family is paying for my contribution. Without their generosity, I would not be having the treatment.
So when is Roche going to make it more accessible to everyone, so everyone can have this amazing preventative treatment for hormone-positive breast cancer?
I fully support the fundraiser to raise funds for a mobile mammography unit. Great idea. Just hope they have the people to read those mammograms... anyway, I would not be helping raise funds. I would be a guest. "Oh, an exhibit," said a friend, who seemed to think I should go so I could meet others on herceptin.
So what do you think?
By the time I get responses I will have decided what to do as I said I would tell her tomorrow. And the lunch is on Wednesday.
As my friend said: "I have the whole night to toss and turn and keepn changing my mind".
Anyway, while I was there one of the admin people asked who was having herceptin and could go to a lunch. The head nurse indicated me. The lunch is on Wednesday, organised by pharmaceutical company Roche.
Anyway, the head nurse told me how wonderful the company is, how they treat them, most recently to a weekend at Sun City and all the nurses from the centre went.
Well, everything was fine till I got the call from Roche later today. When they woman told me they supply/manufacture Herceptin, I got angry, saying they need to bring down the cost and that although it is expensive in the UK and Canada, it is still cheaper than here in South Africa and that ethically I did not think it was right I come to the lunch, to be treated by them.
Now I think I was rude. I told her I would come back to her. But really. The lunch is to raise money for a mobile mammgraphy unit to service the rural areas. Great. But what about herceptin? Not even middle class people can afford it. I cannot begin to afford it, what often amounts to about R10 000 a month as I have it every three weeks and each time involves a payment of about R4500-something..... each treatment costs R23000 and the medical aid pays 80%.The only reason I am having herceptin is because my family is paying for my contribution. Without their generosity, I would not be having the treatment.
So when is Roche going to make it more accessible to everyone, so everyone can have this amazing preventative treatment for hormone-positive breast cancer?
I fully support the fundraiser to raise funds for a mobile mammography unit. Great idea. Just hope they have the people to read those mammograms... anyway, I would not be helping raise funds. I would be a guest. "Oh, an exhibit," said a friend, who seemed to think I should go so I could meet others on herceptin.
So what do you think?
By the time I get responses I will have decided what to do as I said I would tell her tomorrow. And the lunch is on Wednesday.
As my friend said: "I have the whole night to toss and turn and keepn changing my mind".
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