Sjoe. Got a call from the oncology centre. Why are you coming tomorrow, they asked? 'Cos I have an appointment, 'cos it's my three-monthly check-up and 'cos I had blood tests last week and you, I said to the nurse, surely cannot give me the results.
Why don't you speak to the oncologist and let me know then, I say, you can even tell me tomorrow.
No, I have to take responsibility. That is what he expects. Then he tells me - hope she wasn't lying - that he had just walked past and nodded in agreement. She said my bloods were fine and although my appointment last month was unscheduled - I had had a scare when I found this strange bit of hardness below my left boob which turned out to be nothing, even under an ultrasound scan - it counted as an appointment and now I did not need to come now.
Also, my bloods were fine, she said. Come in February. So we set up and appointment and I am going in, probably tomorrow, to get info re all the tests I need to have before the next appointment: more bloods, a muga and a mammogram.
So I feel blessed but also a little anxious. But then I did have a scan last time, which was last month. And she said she had kept my call for last thing of the day because she knew I would protest. I have to admit I tried to phone back about five minutes later to check that the date we had chosen was ok - did that give me enough time to have a mammogram and a muga? And even now as I sit here writing, I am thinking: isn't February too late, shouldn't I be seeing him in January to make it three-monthly?
Oy ya yoi. Nervous wreck, I am.But so thrilled, am taking a friend out for supper tonight.
And another bit of good news is that saw The Lymph Lady today and my arm was perfect. If only it could settle down, then I could see her less frequently as it really is costing a fortune. But for peace of mind I do need to see her weekly. Costs a lot - get a lot back from medical aid but still need the money to pay upfront each time - but I don't enjoy the anxiety plus it isn't good for me.
I am gonna be fine, gonna be fine, gonna be fine, I am sure.
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, November 29, 2010
Tuesday, November 23, 2010
my scalp is still tender
As I no longer own a brush or comb (nothing to do with the cancer and losing my hair, it's just that I had short, cropped hair for hairs and such items were superfluous), I am seldom in touch with my scalp. That is, I wash it every day with a mild shampoo - the same one I washed my balding hair and stubble when it fell out from the chemo - but do not tug at my hair.
So it was interesting to go to the hairdresser yesterday and notice that my scalp is still super tender. When Carlos just pulled a little on it to put on the highlight mixture, I shrieked. The same when he scrunched my hair with his hand to hold it under the diffuser.
Mmm.. interesting, considering that it is now about 18 months since I finished chemo and have a headful of very healthy looking hair, even if I say so myself. It's bouncy and lekker.
So it was interesting to go to the hairdresser yesterday and notice that my scalp is still super tender. When Carlos just pulled a little on it to put on the highlight mixture, I shrieked. The same when he scrunched my hair with his hand to hold it under the diffuser.
Mmm.. interesting, considering that it is now about 18 months since I finished chemo and have a headful of very healthy looking hair, even if I say so myself. It's bouncy and lekker.
Monday, November 22, 2010
here we go round the mulberry bush, the mulberry bush, the mul...
Oy. Went to see The Lymph Lady today and ....
How many of my postings begin like that. It is becoming tedious, even to me. But yes, I went to see The Lymph Lady today and my arm is up in three places: 2mm at the wrist, 3mm above the elbow and 6mm at the top. All those measurements I have had before. But obviously it's not ideal. Not ideal at all.
She said my arm goes up and down 'cos my weight goes up and down. Am almost 1kg up - so it didn't help to eat the two blocks of blueberry lindt now, first time I have encountered that flavour - but also acknowledged that even skinny people get lymphedema, "the disease" she called it.
So, post blueberry lindt, it's back on a strict strict diet, and gonna pray that my arm gets better.
Flying tomorrow. Just two hours. She said I don't have to wear the compression sleeve but should take it with me to Cape Town, in case. I walked in today saying I wasn't happy with my arm..... I tend to know but often do panic unneccessarily.
Oh, had blood tests today. Nerve-wracking. Have always had a problem with thin veins. Now, post-chemo, it's a bloody nightmare. Plus cannot take blood on my left arm 'cos of the lymphedema risk.
The poor nurse tried twice in the crook of my elbow, then in my hand. I have cotton-wool stuck with plaster all over. Now just have to pray that all goes well with the tests. Seeing the oncologist next week for my three-monthly appointment.
Oh, and had my hair cut. Still kinda growing it but nipped it at the neck and thinned it out and had more highlights put in. Post-chemo, when it grew out, it had a grey tinge. Now that is gone and no grey hairs at all.
How many of my postings begin like that. It is becoming tedious, even to me. But yes, I went to see The Lymph Lady today and my arm is up in three places: 2mm at the wrist, 3mm above the elbow and 6mm at the top. All those measurements I have had before. But obviously it's not ideal. Not ideal at all.
She said my arm goes up and down 'cos my weight goes up and down. Am almost 1kg up - so it didn't help to eat the two blocks of blueberry lindt now, first time I have encountered that flavour - but also acknowledged that even skinny people get lymphedema, "the disease" she called it.
So, post blueberry lindt, it's back on a strict strict diet, and gonna pray that my arm gets better.
Flying tomorrow. Just two hours. She said I don't have to wear the compression sleeve but should take it with me to Cape Town, in case. I walked in today saying I wasn't happy with my arm..... I tend to know but often do panic unneccessarily.
Oh, had blood tests today. Nerve-wracking. Have always had a problem with thin veins. Now, post-chemo, it's a bloody nightmare. Plus cannot take blood on my left arm 'cos of the lymphedema risk.
The poor nurse tried twice in the crook of my elbow, then in my hand. I have cotton-wool stuck with plaster all over. Now just have to pray that all goes well with the tests. Seeing the oncologist next week for my three-monthly appointment.
Oh, and had my hair cut. Still kinda growing it but nipped it at the neck and thinned it out and had more highlights put in. Post-chemo, when it grew out, it had a grey tinge. Now that is gone and no grey hairs at all.
Saturday, November 20, 2010
what you call it
I know I tend to talk about "when I was diagnosed" rather than "when I got cancer" but I was still surprised when a friend wrote me a message on facebook talking of her "malignancy". She had said she was having a lump removed and her lymph nodes biopsied. Post-operative, she spoke of the lymph nodes being "clean" and said this meant "the malignancy was contained and easy to treat. Happiness all round."
Malignancy, I thought. So she did have cancer.
I was telling The Yoga Man about how she was just so cool about it and wasn't it just amazing; he was less impressed. "Hmmmph!" he muttered. "You also say you breezed through your treatment. Breezed through? Hmmmph!"
It's true. I do say I breezed through it because that is how it feels now in retrospective. I had four chemo treatments and yes, I lost my hair, and yes, I did feel k*k, especially after the first one, and yes, I did get progressively worse in my immune-compromised week post-treatment but four is hardly a lot, in fact it's the minumum you can have for breast cancer, and then when I had radiation I was ok, always waiting to get tired like they told me I would, and only getting exhausted between the second last and last session. And yes, I know have the threat of lymphedema and that is a big issue and yes, I did feel sick from the herceptin treatments but I survived it and it feels ok now. I am grateful to be finished the treatments and just hope it all worked and keeps the cancer away forever.
And yes, I do get hot flushes from the tamoxifen and yes, I did gain weight from the tamoxifen but am losing it again, and yes, my nails are shitty and so weak and thin it is scary, but yes, it does feel that I breezed through it.
Malignancy, I thought. So she did have cancer.
I was telling The Yoga Man about how she was just so cool about it and wasn't it just amazing; he was less impressed. "Hmmmph!" he muttered. "You also say you breezed through your treatment. Breezed through? Hmmmph!"
It's true. I do say I breezed through it because that is how it feels now in retrospective. I had four chemo treatments and yes, I lost my hair, and yes, I did feel k*k, especially after the first one, and yes, I did get progressively worse in my immune-compromised week post-treatment but four is hardly a lot, in fact it's the minumum you can have for breast cancer, and then when I had radiation I was ok, always waiting to get tired like they told me I would, and only getting exhausted between the second last and last session. And yes, I know have the threat of lymphedema and that is a big issue and yes, I did feel sick from the herceptin treatments but I survived it and it feels ok now. I am grateful to be finished the treatments and just hope it all worked and keeps the cancer away forever.
And yes, I do get hot flushes from the tamoxifen and yes, I did gain weight from the tamoxifen but am losing it again, and yes, my nails are shitty and so weak and thin it is scary, but yes, it does feel that I breezed through it.
Thursday, November 18, 2010
Didn't drink enough water today
I am trying to drink loads of water - at least 2litres a day - but today only cracked 750ml. Damn. Then drank a glass and a half of red wine - delicious red wine in fact, ataraxia serenity.
Am kinda obsessed with my weight. Maybe not enough, though, cos if I was would have drank more water today. It's all to do with my arm. Managed to lose the almost-a-kilo I had gained, so back down to a 4kg loss, but then didn't drink enough water and ate lentil curry for supper - had potatoes in too - so dunno about what I will weigh tomorrow.
And it's all to do with my arm, with being high risk/borderline for lymphedema, and if I lose weight, then my arm stays down. I pray. Well, it seems to work.
Am kinda obsessed with my weight. Maybe not enough, though, cos if I was would have drank more water today. It's all to do with my arm. Managed to lose the almost-a-kilo I had gained, so back down to a 4kg loss, but then didn't drink enough water and ate lentil curry for supper - had potatoes in too - so dunno about what I will weigh tomorrow.
And it's all to do with my arm, with being high risk/borderline for lymphedema, and if I lose weight, then my arm stays down. I pray. Well, it seems to work.
Wednesday, November 17, 2010
then and now - just an inkling
Taken on February 27 last year - I started chemo for breast cancer on February 5, world cancer day - it shows how my hair was falling out. It never fell out completely; there was always stubble at the top and back, with only the sides completely bald.
I couldn't stop staring at this pic. Think my hair went a little thinner than this, but not much. Today my hair is a mass of curls, chemo curls, they call it.
When I showed this pic to The Yoga Man, he showed me a pic of my face at the time. Mmm.. much thinner. About 7kg less than I weigh now. At present my weight is 2.4kg up from when I was diagnosed on January 15 last year, and 1kg up from last week, but still 3kg down from what it was two months ago.
So essentially during chemo, during the time I went off salads and protein barring tofu and boiled eggs, and during which I had bouts of throat thrush and could consume only liquids and mashed bananas and soft-boiled eggs, I lost only 5kg. Actually, think it was only 4kg.
Mmm.. meanwhile, luckily now my arm is ok. On Monday the measurements were the same as the previous Monday. And I have decided to see The Lymph Lady weekly - instead of the bi-weekly I used to do at one stage - until such time as my arm is stable and I feel ok about it. As in calm and unhassled. I cannot live with the stress I went through about a week ago with my arm. Not good for me.
I am, however, flying - but only a short 2-hour flight - next week. That might throw it out. Plus I need to lose that extra almost 1kg I have gained, else that too could throw it out. But generally much happier when my arm is ok, when it's behaving, as it were.
Monday, November 8, 2010
Arm ok
Sjoe! What a relief! Saw The Lymph Lady now and my arm is up 2mm in one place. So it's ok.
Now The Yoga Man is going to measure my arm to get a base measurement - The Lymph Lady showed me how (this was his suggestion during my anxiety last night, but based on an original idea of hers) - and then if I hit nervous breakdown stakes, he can measure.
It appears that the flabbiness caused by not using the arm - to help prevent lymphedema - is making the arm look and feel heavier.
I am relieved but find these stressful moments are awful. Now I am a little annoyed with myself for becoming so anxious.
Now The Yoga Man is going to measure my arm to get a base measurement - The Lymph Lady showed me how (this was his suggestion during my anxiety last night, but based on an original idea of hers) - and then if I hit nervous breakdown stakes, he can measure.
It appears that the flabbiness caused by not using the arm - to help prevent lymphedema - is making the arm look and feel heavier.
I am relieved but find these stressful moments are awful. Now I am a little annoyed with myself for becoming so anxious.
Sunday, November 7, 2010
angry
Was saying tonight - just been out for dinner - how angry I am that my arm is swollen. Am angry and upset, maybe the two emotions are the same. Was saying I could just take drugs and get "out of it"; have been so diligent and tried so hard to prevent lymphedema and now, although don't really know how bad it is, my arm is swollen and feels kinda uncomfortable.
The test will be - when I see The Lymph Lady tomorrow morning - if it is more swollen than it was on Monday. And if she thinks she can get it down, or whether this is it. This will impact on every second of my life, I said tonight.
The test will be - when I see The Lymph Lady tomorrow morning - if it is more swollen than it was on Monday. And if she thinks she can get it down, or whether this is it. This will impact on every second of my life, I said tonight.
Saturday, November 6, 2010
have a plan
Have decided to stop freaking out about my arm and its swelling.
Could take control and wear the sleeve now but as I might have to soon enough, am going to wait until I see The Lymph Lady on Monday. Then if it is more swollen than last week, when it was up slightly in three places, then going to arrange to see her three times a week and ask if I can pay her at the end of the month rather than at the end of each session.
Then I will wear the sleeve for a while and pray it goes down again.
Then will have one of my new outfits made (bought fab African fabric in Long Street, Cape Town and seeing this designer called Musa on Monday) - well, am going to have one outfit made with long loose sleeves which reach to mid-way on my hand, so that if I do have to wear a damn compression sleeve, it will cover it. And it will be one thin cotton outfit with long sleeves so if I fly long distance and have to wear the sleeve on the flight and the day I land, I have something nice to wear over it.
The Lymph Lady did say that my arm will go up and down. Well the main thing is that it does that. If it does go up and up, and never down, then it's lymphedema, no matter how slight the swelling is. But for now grateful that my swelling is slight. Millimetres still, I hope.
Could take control and wear the sleeve now but as I might have to soon enough, am going to wait until I see The Lymph Lady on Monday. Then if it is more swollen than last week, when it was up slightly in three places, then going to arrange to see her three times a week and ask if I can pay her at the end of the month rather than at the end of each session.
Then I will wear the sleeve for a while and pray it goes down again.
Then will have one of my new outfits made (bought fab African fabric in Long Street, Cape Town and seeing this designer called Musa on Monday) - well, am going to have one outfit made with long loose sleeves which reach to mid-way on my hand, so that if I do have to wear a damn compression sleeve, it will cover it. And it will be one thin cotton outfit with long sleeves so if I fly long distance and have to wear the sleeve on the flight and the day I land, I have something nice to wear over it.
The Lymph Lady did say that my arm will go up and down. Well the main thing is that it does that. If it does go up and up, and never down, then it's lymphedema, no matter how slight the swelling is. But for now grateful that my swelling is slight. Millimetres still, I hope.
Wednesday, November 3, 2010
enjoying writing this blog
It is now getting to the point where I can no longer "gaan aan" (literal Afrikaans for "go on", as in go on and on and on...." about my arm and its high risk for lymphedema and how I spend so much time and effort to avoid actually getting it and having to wear a compression sleeve.
Now, apart from an occasional - as in once a day, ok, maybe twice a day, maybe more.... - passing comment such as "my arm feels dreadful, look, it is definately swollen", I try not to talk about it. So it helps to have a blog. Cos here I can pour my heart out.
Actually I don't, pour my heart out that is. I often keep quiet about things. It is what holds me back from being a good writer; I hate exposing myself, exuberant as I am.
For example, during the recent time when I did have to wear a compression sleeve, I was far far far far more miserable about it than I wrote. I don't even remember what I did write about how I felt, but I do know that I did not write what I really felt, and even now I am not prepared to discuss it, what I really felt during that time, that is.
I just hope that somebody somewhere finds this useful. Or can identify with my experiences and feelings. It is certainly helping me by providing me with an outlet as well as helping me clarify what I feel and trying to understand what is happening. It also serves to document. Cannot clarify why I feel it is important to document; I just believe it is important to keep a record of things and often, in hindsight, I have regretted not recording things. Consider Kevin Bloom's book Ways of Staying. If he had not documented things, he could not have written that book.
Now, apart from an occasional - as in once a day, ok, maybe twice a day, maybe more.... - passing comment such as "my arm feels dreadful, look, it is definately swollen", I try not to talk about it. So it helps to have a blog. Cos here I can pour my heart out.
Actually I don't, pour my heart out that is. I often keep quiet about things. It is what holds me back from being a good writer; I hate exposing myself, exuberant as I am.
For example, during the recent time when I did have to wear a compression sleeve, I was far far far far more miserable about it than I wrote. I don't even remember what I did write about how I felt, but I do know that I did not write what I really felt, and even now I am not prepared to discuss it, what I really felt during that time, that is.
I just hope that somebody somewhere finds this useful. Or can identify with my experiences and feelings. It is certainly helping me by providing me with an outlet as well as helping me clarify what I feel and trying to understand what is happening. It also serves to document. Cannot clarify why I feel it is important to document; I just believe it is important to keep a record of things and often, in hindsight, I have regretted not recording things. Consider Kevin Bloom's book Ways of Staying. If he had not documented things, he could not have written that book.
Monday, November 1, 2010
Up and down, up and down, up and down
After being rather exuberant cos I was on holiday in Cape Town for a week and it seemed that I could start cutting down on my visits to The Lymph Lady, and so save some money and also just bladywell relax about everything, things kinda fell apart a little this morning.
My arm is up in three or four places. So hassled re it, can't remember which. Ok, the wrist is up 1mm so that doesn't really count, then I think it's halfway up my lower arm that is up 3mm I think - or is it 2mm? - and my upper arm is up 2 or is it 3mm? Think the middle of my upper arm is also up, 2mm or 3mm.
Not a calamity yet but if it goes up again, no matter how little, will be wearing that damn compression sleeve again.
The Lymph Lady says my arm is always going to be like this - up and down - and that it could be caused by the flights to Cape Town, and also the heat this morning. Could feel this weekend that my arm was not feeling lekker, and mentioned it to my sister.
It feels much worse tonight.
And I only gained half a kilogram on holiday, which I am sure I will lose soon, so it can't be that.
Oh just want to say that this blog is among the best things I have done. Was really chuffed today when saw a comment from someone who has moved to Joburg, has lymphedema and asked for a recommendation on who to see. Emailed her with the info. So glad to be of help and that this blog is a way of assisting others, even if it's just the reassurance of recognition of a common dilemma or situation, cos it's not all about dilemmas -or is it?
My arm is up in three or four places. So hassled re it, can't remember which. Ok, the wrist is up 1mm so that doesn't really count, then I think it's halfway up my lower arm that is up 3mm I think - or is it 2mm? - and my upper arm is up 2 or is it 3mm? Think the middle of my upper arm is also up, 2mm or 3mm.
Not a calamity yet but if it goes up again, no matter how little, will be wearing that damn compression sleeve again.
The Lymph Lady says my arm is always going to be like this - up and down - and that it could be caused by the flights to Cape Town, and also the heat this morning. Could feel this weekend that my arm was not feeling lekker, and mentioned it to my sister.
It feels much worse tonight.
And I only gained half a kilogram on holiday, which I am sure I will lose soon, so it can't be that.
Oh just want to say that this blog is among the best things I have done. Was really chuffed today when saw a comment from someone who has moved to Joburg, has lymphedema and asked for a recommendation on who to see. Emailed her with the info. So glad to be of help and that this blog is a way of assisting others, even if it's just the reassurance of recognition of a common dilemma or situation, cos it's not all about dilemmas -or is it?
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