From under my hat

Two and half years since radiation

2012-01-29T18:29:00.005+02:00

Was trying to find out when I finished radiotherapy or radiation as everyone tends to call it, when I discovered this blog didn't have a search function. So have now added it.
I now know my last radiation was on June 22 2009, which makes it two and a half years ago.
Why I wanted to know is that about three months ago, I noticed these broken veins below my collarbone on the left side, where I had radiation. They have increased a little since I first noticed them but aren't a big deal. When I pointed this out to The Tango Man at my last visit, which was three months ago so this must have been about three and a half to four months ago that I first noticed them, he said that about 10 years or so ago this was how all radiation patients reacted, and all over the radiated area. He said patients would be amazed when he could tell them during which period they had had radiation.
That part of my chest, well really the neck area above it, is still a little itchy at times and I still use the cream the radiation oncologist recommended at the time, after I had used a cortisone-enriched cream (the pharmacist made it according to her precription).
And then of course I have borderline lymphedema from the radiation which really flares up badly if I travel long distance and which is often a hassle but is mostly ok. But it does mean I do manual lymph drainage massage twice a day, about 40-50 minutes in the morning, and 10 minutes at night. So guess radiation has impacted on my life in a big way but it is all manageable provided I don't have to wear the compression sleeve which I don't like at all, not least cos it means I can't just wear the clothes I wish to.

This is a pic taken today of my broken capillaries - is that the best way to describe them? Not sure...

Then this pic is of my general chest area on the left. It looks far worse in the pic than in real life. It looks so pink and with so many marks. The radiation oncologist did tell me that those marks were latent sun damage that the radiotherapy brought to the fore. I hardly ever go into the sun so that just brought it out as it was unblemished before. But really it's not a big deal. Just wanted to document it, not moan or alarm people, and really this pic seems to have done the opposite. Oh dear! Maybe click onto it to enlarge it; then it doesn't look so bad!

"I don't have an option"

2012-01-24T22:16:00.000+02:00

I am planning a change in my life. Nothing to do with my health, nothing I can write about at this stage. But I am making it my focus: reading an expert book on the topic, going to see a life coach to help me achieve my goal (a bit dubious re whether or not I will actually go through with the appointment as I am not sure I believe in life coaches, preferring psychotherapy for solving problems) and so on.
A friend congratulated me today on making the effort (she has a motivation problem, period...) and I heard myself say: "I don't have an option".
I remember saying that before, I said smiling.
When I was having treatment for cancer, many people said to be how brave I was, how whatever I was, how ... I used to get a little annoyed as I wasn't being brave, wasn't having a good attitude or blah-blah-blah. "I don't have an option," I'd say. And mean it. "I am just doing what I have to do."
Same with this.

Cheryl Radford of Indigo Dreaming has died

2012-01-16T14:57:00.000+02:00

Cheryl Radford RIP

Just read in alli-lifeintransition's
blog that Cheryl Radford of Indigo Dreaming
blog had died. Breast cancer. Cheryl has always been very sweet and very kind and very concerned and we often communicated via our respective blogs.
She lived in New South Wales, Australia.

At this moment there is nothing about her death on her blog but Alli of lifeintransition
wrote yesterday:
Today a very special friend Cheryl Radford lost her fight to Secondary Breast Cancer. Cheryl suffered a great deal towards the end of her life. Haydn her husband called me this afternoon. He was very specific in his words. He said "Please feel Happy for our Cheryl, she is finally at Peace, she has no more pain and hopefully she is now another Angel"! He went on to say she never lost her spirit, everyday no matter how difficult she never complained! He was amazed at her courage...Most of all her dignity She died peacefully.
I will truly miss her. Cheryl was an outstanding woman.
Damn this bloody Cancer. It steals, takes lives like a thief in the night. Creates havoc and chaos in families. Leaves children motherless.
Rest in Peace Dear Cheryl You left us far too soon!
Love Always Alli........XXX

Mystery of the swollen ankle resolved

2012-01-16T14:33:00.000+02:00

The Lymph Lady 2 whom I saw today - and really, too scared to talk but my arm seems fine now, at last, weeks and weeks and weeks post-mytrip - is a phsyiotherapist and she asked about my ankle (it has a gauze bandage wrapped around it, as per the doctor's actions as he said the compression would help the swelling). Well, she redid the bandage (my own attempts were clearly a bit pathetic plus she said the entire heel had to be covered too - the doctor had not done that), and felt the ankle. It is a sprained ligament, she said.
Now, whether that is from the fall or from yoga or gym, who knows (think it must be the fall), but at least it's not gout so I can continue to eat my sardines and anchovies without a second thought!

Today is 3 years since I was diagnosed

2012-01-15T16:02:00.000+02:00

Today, January 15 2012, is three years since I was diagnosed with breast cancer. I remember the day clearly. Remember the days before, waiting for the biopsy results and The Yoga Man saying that he was sure if it was anything serious the doctor would ask me to come in. Hruumph! Bloody hell. (Sjoe, I am still angry, I see.)
I eventually phoned him, from my desk, in the open-plan office, and he told me: "Abormal cells". "Abormal cells?" I repeated. What does that mean? Cancer? "Oh, we don't like to use that word," he said.
Then I remember going to my GP later that day and phoning my sister from my car outside the rooms afterwards, crying. Sobbing.
Was at that same doctor yesterday, for my swollen ankle. Not deep-vein thrombosis and not heart disease, he said. Could be from when I fell (slipped on loose chiffon trousers as I was stepping onto a pavement and cut my knee badly - oh, and tore the trousers - and twisted this ankle but it was sore only for a day.....and that was about two weeks ago. Could be gout, he said, which seemed crazy to me. We never really persued that discussion but hell, I hardly ever eat red meat but when I looked up the list of foods that can cause gout, I eat loads of things which contain purines, such as sardines and anchovies.
Ja, three years. The other day I remember is February 5, the first day I started chemo. The date I finished hasn't stuck in my head (could look it up in this blog, I guess) even though that goes together with the day I was told I had no more cancer in my body. It's the 15th and the 5th that I remember.
I am glad that I am ok now. Grateful. And pray that I am ok. Seeing The Tango Man at the end of February, and have to have a load of tests before I do: mammogram, chest x-ray, abdominal scan. Oh, and blood tests too.
Actually feel quite emotional when I think of it all. Three years ago. Scary.

and now for a swollen ankle

2012-01-13T21:27:00.000+02:00

Damn. Yesterday at work dunno why but looked down and saw that my ankle was swollen. Very swollen. This morning it seemed down but then went up again. I was able to put on my trainers for gym and this, coupled with The Yoga Man telling me I was a hypochondriac, made me decide not to go to the doctor.
However, I am now going tomorrow. Just to put my mind at rest. It's my right ankle. Been on websites and it seems I am not alone in having a swollen ankle that is painless - it is slightly tender if I touch it but really, would not know it was swollen if I hadn't seen it.
Had reflexology on Monday - been wanting to write about that ever since and will soon - but doubt that played a role.
I know looking up medical things on the internet is dangerous but really it musn't be a blood clot or heart problems. Doctor tomorrow morning.

feeling better now

2012-01-05T21:46:00.001+02:00

Been chatting to The Yoga Man and feeling much better. He said I am more dutiful than I realise and that I generally am quite obliging. So I no longer feel like I am a walking firecracker.

I am a bit fiery

2012-01-05T21:09:00.000+02:00

I am not so happy with myself today. Kinda exploded earlier. I don't take instruction well. I don't take any instruction in fact. I like to do what I want to do. And unfortunately inefficiency drives me dilly. Be that as it may, I am ok now and I don't like to linger on things. But sitting here quietly has helped. It is in fact hours since I 'lost it' and it was only momentary anyway. And then an hour later, after I was sent an email saying my outburst was uncalled-for, I did apologise, also by email, not because I meant it but to keep the peace for the foreseable future.
Anyway, started my day at the oncology centre. Was so uptight about the visit, an unscheduled one, that when I arrived at work realised I had forgotten to wash the conditioner out of my hair which was now lined with this film of soapy solution. So stuck my head under the tap and walked into the office with soaking wet hair.....
I had had a pain below my collar bone since Tuesday. Was pretty sure it was just from gym cos it started on Tuesday a fter I had been to gym and the firm lymph massage I get from The Lymph Lady2 later that morning made it hurt. But did I really know it was just that? And when I spoke to my biokineticist on Wednesday and went though the exercises I had done the day before, she didn't think that had caused it....
To be on the safe side, I went to the oncology centre this morning. I long ago gave up on phoning. All their staff who were there when I had treatment have left, with the one dying shortly after, and they don't know me and I don't know them. In fact, am grateful that this year didn't give them Christmas presents. Have fortunately spent so little time there that it didn't even enter my consciousness.
Anyway, I just pitched. I explained I was a patient of The Tango Man, and two nurses examined me right there in the reception area. Look, in the past when I have pitched with a problem, they have called The Tango Man but that was when they knew me. Mmm.. that is maybe worrying that I am not getting that attention.
They did offer to bring my appointment forward (going at end of February) but I declined. Both said it was muscular/ligaments. Nothing there, they said.
Relief. That would be an understatement.
I had decided that if the pain meant the cancer was in my bones, would have resigned from work, borrowed some money that I would get from my pension fund and go somewhere for a week at least before starting treatment.
Luckily I am fine. And in retrospect, resigning would have perhaps not been the right thing to do as work can keep one "normal" and sane.....
My arm is unfortunately not great. Hasn't stabilised. Was up 1 and a half cm in more places this week but down in others. Might wear the compression sleeve but tomorrow is a gym day and the thought of wearing it for gym.... either with my arm and sleeve exposed (it is a heatwave here) or gyming in long sleeves.....think I can manage another day without it.
Going to do lymph massage now. This constant routine, dedication, discipline, whatever.... can be a bit painful but damn better than wearing the sleeve all the time.

It's taken five weeks

2011-12-21T15:12:00.001+02:00

Monday was five weeks since I stepped off a plane returning from Europe and that is how long it took for my arm to come back to normal. That is the problem of flying long distance with a limb at risk of/borderline lymphedema. And that is wearing a compression sleeve on the flight, for most of the trip, and much of the time since I have returned.
In contrast, my feet, which are not lymph-compromised, swelled for five days after my return. Last year I wore compression socks on my long-distance flights, and they didn't swell at all.
And admittedly, this year my arm swelling was worsened by the fact that I was ill and so unable to do lymph massage on arrival after my flights, both in Europe and here, and then again for weeks after the flights.
But still. Been awful. Always the fear it won't go down, the fear that I have lymphedema plus the damn irritation of wearing the sleeve, especially in a heat wave at the height of summer here, and so not being able to wear most of my clothes...
Be that as it may, I am super duper lucky. Love my arm for finally coming right. Now off to Lesotho for a few days, where it is likely to be even hotter than here and The Lymph Lady2, whom I have been seeing since The Lymph Lady has been away, plus recovering from an operation to first one and then the other of her arms and so cannot heal if she works now, says I must be careful of sitting in the sun. But then I always wear a hat and use sunblock which is permanently in my handbag (purse).
We are driving down to Lesotho tomorrow (I am flying back as have to be at work on Monday) and she said I should wear the sleeve for a car trip longer than four hours but have never heard of that and never had hassles before. Also been reading the The National Lymphedema Network website for prevention tips and it doesn't mention anything re car trips.
But I will of course take my compression sleeve and, should my arm not feel ok, will consider wearing it.
So lazy today - guess the warm weather doesn't help that - but my friend is here from New York and that is not an everyday occurrence so gonna get outta my gym gear from this morning, get into the shower, get dressed and go off and meet her as the next time will be on Monday, the night before she leaves. (This sounds like I haven't been seeing her - have had a great time seeing her even though she is here because her elderly mom is ill.)
Happy festive season to you all!

A different kind of lymph massage

2011-11-29T22:51:00.001+02:00

Since the week I finished radiation two years ago, I have been seeing The Lymph Lady. I don't have lymphedema but am high risk for it and in the past while, as in the last month, my arm has not been good because I travelled long distance (from South Africa to Paris and then Budapest) and also because I was ill before I went (sinus and tight chest and had to go on a nebuliser, even on the day I flew out) and also when I came home, and so could not do lymph massage. I did it a few time while on holiday before I became ill again, but started again on Friday.
So my arm has been a little haywire and I wore the compression sleeve for most of my trip but as it was the dead of winter, well, really only autumn but freezing for me, it didn't matter much as I also wore gloves.
Anyway The Lymph Lady is away. More than that, she had first one op on one arm and then another on the other arm and so cannot work else it won't heal. And she is unavailable till January 23 although she did see me briefly to measure my arm cos I was panicking.
So I saw Lymph Lady 2 today. My goodness. Have seen her before as a physiotherapist. Lymph Lady Original is an occupational therapist. It appears (and I am talking here from what I can see from a website) is that she is Casley-Smith trained, which is one form of lymph treatment. Lymph Lady 2 might have a different training. It took place in Germany recently. She also did a nerve/neural stretch which Lymph Lady Original told me should never be done without movement (my biokineticist had done it on my arm).
But the most astonishing thing about Lymph Lady 2's treatment was how rough it was. Instead of gentle yet firm movements which move the lymph, this was an aggressive assault on my body, penetrating deep into the lymph nodes in the groin area, and aggressively manipulating the lymph nodes around my neck and on my back and...
Amazingly, my arm felt remarkably better afterwards, a more noted transformation than I have felt with The Lymph Lady. But now I am sore under my armpit, possibly as a result of yoga tonight. And when I did a hanging dog pose at yoga tonight, my arm hurt the same as with a neural stretch, and so I had to come out of the pose.
Am very curious to hear about others' experiences of manual lymph drainage massage.

Cannot believe haven't posted for a month!

2011-11-16T21:01:00.001+02:00

Sjoe! Been hectic and still am. Went floating down the Danube, busy writing a story about it now and haven't stopped for one second, not even on the cruise which was fab but not one bit relaxing. (Guess that is also me, always doing this and that.... )
Anyway, had the usual hassles with my arm when travelling abroad. It swelled up a little, and in fact I spent most of my holiday wearing a compression sleeve. Tomorrow see The Lymph Lady - just to be measured, as she has had an op on her arm and cannot do the massage till next month - and that will determine if I can take it off. But must say it does feel fine now, and it's evening, so intend not to wear the damn sleeve tomorrow.

Great news!

2011-10-17T20:04:00.000+02:00

Had my four-monthly check-up with The Tango Man today and all is well. So relieved. Always nervewracking, especially considering I felt so well when I was diagnosed with cancer so I know that feeling great is not neccessarily any indication.
Now see him again in February, before which I have to have my annual mammogram, plus he is sending me for a chest x-ray and a abdominal scan. Guess I will be hyper hassled before all that but until then, can relax.
Two interesting things: he said that with tamoxifen, I shouldn't have taken calcium pills. "You didn't listen to me," he chastised. Well, I did and always do listen to him: he never told me although might have mentioned - or did I read it somewhere? - that tamoxifen helps the bones. Anyway, that kinda explains why my calcium was raised.
Then he also said that there was no need to take aspirin a week before and after flying. Just the day before the long flight, the day of the flight and the next day. He also said there was no need to wear special flight socks, like the nurse had told me to last year when I flew to Monaco.
Oh sad news is that darling, wonderful Joyce, the oncology nurse who called everyone "Poppie" has died. What a shock. Heard she had got sick, had had an ulcer, had a large part of her stomach cut away and now, Sister Emily tells me, she died. Can hardly believe it. Was about 30-something. Apparently leaves a 14-year-old daughter and that her husband had died when she was eight months pregnant.
What a bloody tragedy. And how ironic that she helped everyone get over and deal with their illnesses and so she helped save lives, yet now she is dead. Funeral was two weeks ago. I would have gone, I told Sister Emily, but apparently it was in Vryheid, which is pretty far away. If there is a memorial service - Emily said there would be - I will go. Hope it's not when I am away. Joyce helped me a lot and feel I must help her family in some way.....

Solved the calcium problem

2011-10-13T22:37:00.000+02:00

It was with great relief that I heard the centre manager's voice on the phone yesterday. I was being phoned with the results of my blood tests done the day before, the ones which would check my calcium levels three weeks after stopping the calcium supplements, the ones which would tell me if had parathyroidism and needed an operation to have them removed.
Well if it was her on the phone, rather than The Sexy Doc, I clearly didn't need an operation, surely?
And I was right. So relieved that I barely asked for the results, she said my parathyroids were normal, my calcium was 2.56 instead of the normal rate of 2.55 but had clearly come down, I just had to stay off the calcium tabs. By implication my glucose was clearly also fine but there was no indication of what tests I had to have next, or when.
But I don't have to have an operation, my calcium is practically normal, and so I am relieved.
Had more blood tests today, this time for the oncologist I am seeing again on Monday for my four-monthly check-up. Now those better be ok too.

I tested positive for e-coli!

2011-09-26T18:42:00.000+02:00

Last week when I had what seemed to be a bladder infection - excessive frequent urination, abdominal pain, and vaginal burning (not only when urinating) - the doctor sent off my urine to be tested. (A preliminary test in the room had revealed all sorts of things: protein and blood are what I remember.)
Well, phoned today to get the results and he said they "grew" a forgot-the-word e-coli. Said the pills I was on were fine for that, should take them for another 5 days (I said I wasn't sure if was 100% better),and I said good-bye and that was that.
"E-coli! That's food poisoning," said my hairdresser, whose salon I had phoned from (had the day off 'cos worked midnight shift on Saturday).
So I phoned the doctor back, spoke to the nurse/receptionist who said it could be from food, and then decided to chill and just go get the new script and that's that.
Well, when I told my biokineticist, she was aghast. So now I also am, well, kinda intrigued. How did that happen?
Am obssessive with hand-washing before I eat/cook, eat super healthily but maybe it was the braai (barbecue) I was at on Sunday... who knows.
Meanwhile, the oncology centre phoned today. Took about three days for them to return my two calls and was planning a bitchy posting on that, but anyway, they said that The Tango Man said not to worry re the increased calcium levels, that he was glad I had stopped the calcium supplements and there was no need to see him earlier, something I know which is impossible anyway as he is going away on Tuesday until a few days before I see him on the 17th as they had to postpone my original apppointment.
Anyway, just got a call from The Lymph Lady. Had asked if I could wear support panties/underwear as I know I am not allowed to wear anything tight. Just for one outfit which I bought today, I said, and not the one which goes up to the boobs. If it's occasional, you can, she said.
So anyway, I am fine. Saw The Lymph Lady this morning too (the question came later, after I bought this skimpy dress), and my arm was even better than last week.
Oh, and I had my hair cut and highlighted and it looks really fab (the pic on this blog was taken ages ago) but forgot to get the hairdresser to take a pic so will get one taken another time...

No more trauma

2011-09-22T19:17:00.000+02:00

Just realised that the oncology centre did not phone me back re my query whether my raised calcium levels were any cause for concern, but feeling ok about things now.
As I said to The Lymph Lady, and then repeated to two friends last night, at least I am in tip top condition so if anything is wrong, I will deal with it.
Saw my GP today as I have a bladder infection. Checked with the thyroid doctor yesterday, and he said my symptoms had nothing to do with the Vitamin D pill he had subscribed.
Anyway, the GP said when he had been sent the results of my blood tests last week, he had barely noted the raised calcium as it was minor. And could be linked to the lowered vitamin D levels. That, he said, he had circled, saying low vitamin D levels were so rife in, ironically, "sunny South Africa" that the cost of the test had decreased from R700 to R300 because of increased demand.
He also said he doubted my raised calcium was anything serious and said, after I had asked, that he had seen patients whose levels were raised 'cos of supplements. And The Lymph Lady, whom I saw yesterday, said vitamins and supplements can be toxic and are not neccessarily all excreted through urine.
Oh, and two bits of great news: the GP confirmed my resting heart rate is 64 - I can barely believe I am so fit as my cardio has been capped and I don't do much at all, neither in terms of intensity nor frequency, going to gym only 3X a times, yoga once, and never doing more than 70% of my heart capacity, as instructed. Just shows that consistency pays!
And the other great news is that my arm is back to being perfect. Semi starved myself, lost weight, and all is well.
Just have to keep my weight down. (Oh, ate loads of cheese at a wine festival last night so today it wasn't perfect, but that is another story.....)
Now just frustrated cos cannot exercise cos on antibiotics for infection. Was so restless today that did a stretch on the balcony at work and then took a brisk walk down the road.
Feeling ok so pretty confident I am ok.
Off to Fashion Week tonight.

Have a plan so feeling fine

2011-09-21T00:25:00.000+02:00

Gonna contact oncology centre and ask if slightly increased calcium is cause for concern and must bring forward appointment due for Oct 17. Then gonna contact thyroid doc and ask if excessive urination plus burning plus abdominal pain is cause for concern and if caused by hypercalcemia or Vit D pill. If these are all negative then contacting GP re urgent appointment for what is clearly a bladder infection.
Sent via my BlackBerry from Vodacom - let your email find you!

and now for what seems to be a bladder infection

2011-09-20T22:41:00.000+02:00

I am now going crazy. Cannot stop urinating and it's burning. Yesterday took citrus soda and it disappeared. Now tonight it is insane. Think yoga made it worse and went to the toilet 3 times during yoga and,since I have been home, about .. dunno... six times?
Took the Vitamin D pill calciferol on Saturday and one of its severe side-effects, according to the internet as I didn't get a pamphlet with the pills, is excessive urination. But abdominal pain and burning too?
Then read on the BBC site for hypercalcemia now that one of its symtoms is excessive urination and abdominal pain.
So must I contact the doctor who put me on the calciferol, or my GP?
Think will phone the thyroid doc in the morning, then take it from there. Feeling a little better now. Abdominal pain gone, burning has subsided. Don't feel like I need to go to the loo, although I did go about five minutes ago, before I started writing this.
Going mad. Not happy re this whole hypercalcemia either cos many sites say it is a sign of breast cancer and what I just read, that it has spread to the bones. Now that is all I need. Think am going to phone the thyroid doctor tomorrow and ask him. Or the oncology centre. Gotta know what is going on. But also need to get whatever is causing this excessive urination to stop.

Raised calcium and low vitamin D

2011-09-16T23:09:00.000+02:00

This has really been a month of tests. For some inexplicable reason, this is the month I have scheduled many of my annual tests: the opthamologist, gynae (have to have Z-sampler every six months) and my thyroid doctor (endocronologist). Next month is the oncologist.
One hassle about this is that it costs me a lot of money. For example, the gynae cost me R1660 of which the medical aid paid back R527. Look, I am grateful to have access to such good doctors and am lucky I can afford to see them but the reality is that I then tend to spend the equivalent on something frivolous - and why not? If I always have the money to spend on the excess costs when it comes to my health - and I do believe in prioritising my health, why shouldn't I spend the equivalent on something fun and fulfilling?
Anyway, this week I had to have a series of blood tests before seeing The Thyroid Doc. Guess I could call him Mr Sexy. He had said a year ago that he needed to look at my general health and so he was scheduling me to do a series of tests. When I got thrush in my mouth, I did the glucose fasting test earlier this year. But did all the others this week.
And the results have thrown me a little.
My thyroid and cholesterol were perfect. In fact, my cholesterol was 4.9 which for me is excellent. And then in the general examination, my resting heart rate was 64 which I am totally chuffed about as I am clearly getting fitter by the second, and my blood pressure was 104 over 70. And I had lost 3kg since last year.
So far all very good.
But... my calcium is slightly raised (2.6-something instead of 2.3 or something) and my vitamin D is very low (15 when 30 is normal and 10 is dire).
Dr Sexy said the raised calcium could be because I am taking calcium pills and so I have stopped them with immediate effect. And he has prescribed this potent vitamin D tab to be taken once a week (rushed out from work today to get them so can start tomorrow) and am scheduled for more tests in two weeks' time.
He also said the raised calcium could a benign tumour on the parathyroids.
But I have been googling "raised calcium low vitamin D" and it all sounds so fakking dire I could vomit.
Oh well, nothing I can do about it right now. Doing the tests on October 11 and getting the results the next day, before Dr Sexy leaves the country for three weeks.

the great diet - to prevent swelling

2011-09-13T22:33:00.001+02:00

Went to The Lymph Lady on Monday and my arm was a disaster. What I do remember is that it was up everywhere, except for one place, and included a 2mm increase at the wrist, which is most unusual for me, and a whopping ghastly 1cm on the upper arm. No wonder all my t-shirts have been feeling tight.
According to The Lymph Lady, this is all in the upper range for me, but not the worst it has been. Because I have gained weight - 2.4kg since my lowest weight - I am now on a major diet and am seeing her again next week. Already lost 1kg in one day, and today my t-shirt sleeve was loose.
I have a lot at stake. Have stopped the binge eating - The Yoga Man says I have been eating more for about 5 weeks when a certain (not health related) situation caused stress but I was only aware of binge eating when matters re that came to a head about a week ago.
Anyway, luckily I know from the dietician I went to 'cos of the tamoxifen weight gain what to do: minimal protein and no minor mouthful binges/overeating. Last night managed to eat only steamed veggies for supper; tonight I had a little bit of sardines with them and then some fruit salad, but I had done a yoga class. Just hope I don't gain weight.
At least the binge eating stopped. I have replaced it with binge shopping - treating myself to fabulous shoes and clothes. Getting a bonus at work at the end of the month so should be able to balance it out then.
I sound more miserable than I am. Look, I was really miserable a week ago. Not miserable now. Just wanna make sure my arm goes back to normal and that I don't develop lymphedema. It clearly is highly unstable. And I cannot gain more than 1/2kg. Gotta keep my weight down, down, down....

All well!

2011-09-09T16:27:00.000+02:00

Delighted to report that both tests I had on Monday are negative for cancer - the pap smear and the Z-sampler.
Had to phone the gynaecologist's emergency pager for the second time before he phoned me with the results. But he did apologise and did seem to understand that for me, getting the results was an emergency, was urgent.
I am so pleased that I was assertive enough to phone his emergency pager again this afternoon when he didn't phone me this afternoon and his rooms were closed. He was rushing to theatre for an emergency, he said.
I am relieved. Totally relieved. I kept thinking he is trying to protect me, trying to give me a few more carefree days before he breaks the news, and I kept thinking he is being negligent... one can work oneself up.
Glad I can now relax over the weekend.

Damn the doctor

2011-09-08T21:54:00.000+02:00

Had a Z-sampler test on Monday. It tests for endometrial cancer, cancer of the uterus, which can be caused by the tamoxifen tablets I am on. The stats for tamoxifen preventing breast cancer returning are far higher than the chances of contacting endometrial cancer, so for me it wasn't an option, although I know there are women who won't take tamoxifen.
Anyway, the test is ghastly. According to the doctor, and his assistant, some women find it unbearably sore; others don't. I am one of those who do. It is like a pap smear X 50 although this time there wasn't prolonged pain afterwards, even though it did hurt a little the next day. And it bled a little, even the next day. Oh, and the doctor said that next time I can take Voltaren suppositories to numb the abdominal area, and I willingly took the script for it because I can still drive myself there and back; I just won't feel the intense pain. (I have the test every six months.)
However, was super pissed off that the doctor didn't phone me with the results. I had to phone him today, which I did, and I know he phones back at the end of the day. At 4.50pm I realised he hadn't phoned so I phoned again, only to be told he was busy - but still there. By 6pm I got the answering machine. So I phoned the emergency number, thinking: for me this is an emergency. I have had cancer. I need to know I am ok. If I am not ok, I also need to know. I thought: if he is cross with me for abusing the emergency number, f.. him. For me it is an emergency.
He didn't phone back.

my blog was hacked

2011-09-08T00:11:00.001+02:00

My blog was hacked. So was my twitter account. And my facebook account. Deleted all my gadgets on this blog. Seems to have removed the problem - I hope. It will now take me some time (over the weekend?) to reinstate some of the features that were on this site.

In a silly quandary

2011-09-07T23:31:00.000+02:00

My arm is up. I can feel it. Everything is tight. It looks bigger too although sometimes I think it doesn't and it's just the angle I am looking at it.
I have gained 2.4kg from my lowest weight. 1.3kg of that since last Friday when I got stressed about something - not health-related - and went on a compulsive eating binge, something I haven't done in years. Well not consistently, something beyond eating one thing cos of stress.
Now I am still fatter although hoping tomorrow I will have lost some of it.
My quandary is this: do I wear a compression sleeve for a few days to help my arm? Or do I wait till I see The Lymph Lady again on Monday, after which I will probably have to wear it, maybe even forever, so why ruin the next few days? And it's so hot too, summer is starting here....And I don't feel like adding any stress or discomfort to my life.
Think I will get onto the scale tomorrow and decide. If my weight is down but my arm isn't, will wear it, although goodness knows what clothes I will wear to cover the sleeve in this heat....
If my weight is still the same, will not bother with the sleeve. My left arm is a little thicker - marginally - than my right arm, and weight gain, even of 2kg, would accentuate the feeling of thickness even more.

Variation of lymph massage

2011-08-30T22:39:00.000+02:00

Feeling a little alienated from this blog. Think it's because I do not want to write about what's been occupying my mind (I did mention it in my last posting). Well, it's not just something I would prefer not to write about, I cannot. (Gosh, now doesn't that sound dramatic!)Luckily, it has nothing to do with my health.
Well, anyway, want to document that I have now had to add an additional move in my twice-daily manual lymph massage. The other day I was waiting to see The Lymph Lady. I had already taken my top off and as she was delayed, I lay on the massage bed and read my book (I tend to schlep a book everywhere, sometimes for months without opening it....). When she then walked in, I was lying on my side with the book and so she then saw me from a different angle to usual and noted that my left boob was bigger. "It could always have been like that," she said. And I think it was. I think one was bigger, in the same way that my left foot is a slightly different size to my right one (cannot remember now if it is smaller or bigger).
Anyway,I think that it is a little fuller. Which could be part of the borderline lymhedema from the radiatherapy I had. She said the main way to determine that is in the feeling - does it feel sensitive and tingling, does my bra feel tighter. There is no different feeling thank goodness but to extra careful, she has added in a move. Moving the hand from the bottom of the left breast but still on the breast rather than below it, in a swipe up the sternum, to the top of the right breast and under the armpit.
Oh and my arm was up half a centimetre on the top when I saw her on Monday but as other parts of it were down, it is ok. But that feeling I had of it being awful was not imagined - it is up on the top but luckily nothing to be fearful of, provided it goes down again next time I see it. And it's all within my usual range, she said.

Took a local flight and....

2011-08-24T23:10:00.000+02:00

Went to Cape Town to see my dad. Think the combination of pushing him around in the wheelchair - how he now gets around when he goes out - plus the two short local flights (2hrs each way), have messed up my arm a little. Oh, and the fact that I had a little bit of an eating spree shortly before I left. And that little weight gain - 1and a half kilo - is bad for my arm.
Plus I didn't exercise on Monday 'cos was away (usually gym on Mondays), then didn't go today because had to go a funeral and had to make up the time (funeral of a 40-year-old former colleague and mother of two boys aged eight and six who died from an anneurism). Then cannot go tomorrow (well, want to go, but need to collect tickets for a jazz festival from the city centre and The Yoga Man has just persuaded me to miss tomorrow as I am on deadline at work and under pressure...
He has also told me that whenever I fly, I complain that my arm is up.
And it really is. It is slightly warmer during the day - but freezing at night and at the moment am glued to the heater - and put on a short-sleeved knit top this morning, and the bloody thing pinched slightly on my arm. I immediately took it off and threw it back into the cupboard.
Anyway, was over-eating cos was doing it compulsively (look, had one day of had eating and am sure will look the weight within a day or two) and that is also linked to why I haven't been writing: been preoccupied with something which is not related to health issues and isn't anything I want to write about. Not life-threatening so nothing to worry about; just something I need to sort out and which has made me super-stressed. And it's not relationship hassles either... anyway, all will be resolved.

What I have learned in the last three and a half weeks

2011-08-04T23:28:00.001+02:00

I have had a sore throat which developed into flu-like symptoms and then sinus problems, been on antibiotics for nine days (finish them tomorrow) and have not been to gym or yoga for almost a month.
I have learnt:
* that despite doing only sporadic lymph massage - twice at visits to The Lymph Lady and about once at home, I have not developed lymphedema;
therefore, I need to relax about my arm, about being high-risk/borderline lymphedema; and
* if I don't exercise, my coping mechanisms are radically diminished. This has not been a surprise to me; I always say I could not lead my busy lifestyle, often doing things/chores/whatever before work, going out every night except Mondays, even if it is just to an exhibition opening in the evening, and doing manual lymph drainage massage for 50 minutes to an hour per day, if I didn't exercise. This recent bout of minor illness but with not being able to exercise, and each time I did/had lymph massage, getting sicker so having to discontinue doing it again......showed me how ratty I get, how unable to get things in perspective. And it didn't help that have been through a rather trying time in one context (not health luckily).
Was so anxious about my arm that I eventually went to the doctor. "I don't give a shit about being sick," I said. "I just wanna be able to do lymph massage. And exercise".
Ironically, now that I am 98% better, might not go to gym tomorrow as need to do a couple of urgent things, eg, have the gate buzzer repaired as the locksmith replaced the battery and now it doesn't work, and go to The Listeners' Library (am addicted to listening to books in my car).
* Oh, forgot the 3rd thing I learnt: humidifiers are not for finicky, wacky, fragile people. They work. The entire bedroom floor was wet this morning 'cos I had it at such high intensity but after two nights of having it one throughout the night, I was able to do lymph massage this morning - without becoming sicker. Viva humidifiers!

Week three of little lymph massage

2011-07-26T23:19:00.001+02:00

I am so tired of being sick. Not 'cos I feel ill, 'cos I don't, but because it means I cannot do lymph massage.
Got better last week 'cos stayed home on Tuesday and doctored myself, so on Friday saw The Lymph Lady. "You sure you better? Sure you want to do this (lymph massage)?" she asked. I was sure. And sure enough, later that day I became worse.
By Saturday I was much better, so left the massage till was certain I was ok. On Sunday night The Yoga Man said I was still a little nasal, so decided not to go to gym the next morning (haven't been for weeks now). But when I woke up on Monday, felt so great that decided to do lymph massage. And true enough, an hour and a half later, I had a cold.
By today, I was what we call in Afrikaans gatvol (at the end of my tether). So off I went to the doctor.
I have a sinus infection. He said I will feel better soon-soon. So will be able to go back to gym by Monday, will be able to see The Lymph Lady for another session on Monday too, and hopefully, will be able to do manual lymph drainage massage "as soon as I feel better", which should hopefully be within a day or two. Start the medication tomorrow, with breakfast.
* Oh, one thing I was delighted about. My resting heart rate used to be 80. That was post treatment, with minimal cardio allowed.
Then earlier this year I was allowed to up my cardio to about 70% of my heart capacity. I have been meaning to measure my heart rate again but haven't done so and today the doctor confirmed what I had thought/seen on the machines at the gym. My resting heart rate is now 72. He said that is standard. Chuffed, cos cardio is still capped. So shows I went back to an ok level of fitness pretty quickly.

to wear or not to wear that damn sleeve

2011-07-18T22:27:00.001+02:00

The Yoga Man thinks I have adult asthma. It's much worse than the childhood one, he says, which just goes away.
Don't you think you're being a bit dramatic, I ask. It's just flu, only been a week.... I mumble.
Exactly, he says. Dramatic. That fits you.
Bloody hell.....
Anyway, the fact is I am still sick. Would normally not give a damn. Yes my chest feels tight, yes my voice is not that great (it sounds gravelly) but I mostly feel fine.
The trouble is that I cannot do lymph massage when I am sick. And the days are passing and I am not getting better.
Is this tight chest caused from Herceptin, I wonder. Or am I just being neurotic. (Only last night read Joanna's blog, Life has its ups and downs which referred to how, once you're had cancer, every little niggly pain becomes a major calamity.)
But my arm is not feeling great. So do I wear the sleeve? Wear it, says The Yoga Man, who doesn't think the sleeve is a big deal at all. Not sure I have the courage. It fills me with despair. Will see how I feel tomorrow. Just pulled up the sleeve of my t-shirt and looked at my arm. It looked fine to me. Will decide tomorrow. Maybe I will stay home tomorrow - again - (did so one day last week too) in an attempt to shake off this lurgy once and for all - for the sake of my arm and my anxiety re lymphedema.

no lymph massage for a week

2011-07-17T17:16:00.000+02:00

Got sick again. Had sore throat on Monday, stayed home and got better. Was fine on Tuesday and Wednesday, then sick again on Thursday and by Friday had almost no voice. So have not been able to do lymph massage. That is my biggest problem. Not being sick, which is minor. Just hope my arm is ok.
Otherwise, have really enjoyed the extra time this has allowed me. Gym time too. Look, prefer going to gym and would rather do lymph massage and know I am doing my bit to help prevent lymphedema but the plus side is that I have been reading and reading.... even before work on Friday - and that is just too wonderful!!
At the moment reading Ivan Vladislavic's Double Negative, which was shortlisted for the (South African) Sunday Times's Fiction Award - he has won both that and the Sunday Times Non-Fiction award in the past. And also finished this year's winning novel, Young Blood by Sifiso Mzobe, which is about a young school drop-out turned car thief in Umlazi township in Durban. Ivan's novel is about a young varsity dropout during apartheid and then post-apartheid in South Africa.

about-turn

2011-07-10T20:01:00.000+02:00

Was driving to see The Lymph Lady the other day when I thought: Oh well, if I have lymphedema, then maybe that's the price I have to pay for not having cancer.
"What an about-turn!" remarked The Lymph Lady, and I suppose it is a change in attitude.
Meanwhile, though, happy to report that I don't have lymphedema. Still borderline though. Most recently my arm was up 4mm at the top though. I am now going only twice a month but did communicate with her via SMS today though, even though it's a Sunday, cos have had an incredibly sore throat which is possibly caused from blocked sinusus forcing me to breathe through my mouth. Didn't do my manual lymph drainage massage yesterday and contacted her to ask her what to do, but by the time she had responded had already done it. She said to wait another day and see how I feel, so I won't do it tonight. (Doing the massage when you are ill just makes the lymphedema/borderline lymphedema worse.)
Anybody else out there doing regular lymph drainage massage?

yoga vs lymph massage

2011-06-20T22:33:00.000+02:00

The Yoga Man said that if only I could put weight on my arm and do inversions, I would not need to do manual lymph drainage massage. That the inversions would do the trick and help keep lymphedema at bay.
Asked The Lymph Lady about it today and although we didn't discuss the value of yoga in fighting lymphedema (she has previously said it was good for me), she did say:
* yoga inversions help oedema/edema (swelling as opposed to lymphedema swelling); and
* the manual lymph drainage scores 'cos it opens up lymph nodes so that the lymph has somewhere to move to.
Apparently the internet is abuzz with how yoga helps lymphedema.These benefits are ,however, general ones rather than "as opposed to massage". Will research it, get The Lymph Lady's opinion, and report back.

Grrrr! Cross with myself

2011-06-20T19:29:00.001+02:00

Now before I even start please don't write saying that I am hard on myself. I am causing my own hassles so need to reprimand myself. Basically my arm is up in a million places but luckily not so bad that I need to wear a compression sleeve - and my weight is also up. And that is what I need to control because my weight affects my arm. So those two handfuls of pitted dates I ate just now were not one bit necessary and I need to translate the refrain "Oh I must lose weight" into concrete action ie avoidance!!
Meanwhile had an annoying day. Someone asked me to do something and instead of being the enthusiast they expected, I said "no" and explained why. They walked off saying they would speak to XXX, in other words,
talk to somebody who would make me do it. Dunno why people cannot cope if someone says "no" but I also know that I am far more aggressive than I realise and maybe I should have handled it more sensitively. But I have no time for people's sensitivities over junk - ok ok, intolerant but see no reason why I have to agree to everything that is proposed.
Then I went to testdrive a car and everything went wrong - from the sales assistant not knowing something about the car I did (from reading their website on the internet), then her showing me a car which was out of the price range I requested, then when we did get a car for me to testdrive, it had no petrol!!!!!! So after one minute, I drove back to the dealership.
So it has been quite a day. But inside me am fine. Just a little annoyed. And at least can just chill tonight. Gonna make salmon and steamed veggies for supper. And that's not any different to what I normally make........

A few more details re my visit to The Tango Man

2011-06-14T22:06:00.000+02:00

Was so relieved that I was ok on my four-monthly checkup that I posted on my phone from the reception of the oncology centre and never really wrote anything else about my visit, beyond the fact that now allowed to up my cardio (exercise) by 5 minutes provided I do it gradually.
(Whew! That was a long sentence...)
Anyway,when you know you ok - at least for that day and can go off and do your thing for the next four months till the next visit - nothing else matters. So I forgot to discuss the oral thrush I had - and why - which had prompted me to go for a diabetes test on a doctor's recommendation. Forgot to discuss my nails which are still splitting a little. But did mention how the fingers on my right hand (the one not at risk of lymphedema) are slightly swollen and one ring broke and had to remove the other. The Lymph Lady had said it might be from tamoxifen which can cause water retention but The Tango Man said he really didn't know and was so unconcerned, so was I. If he is not worried about something, why should I be but it is maybe worth noting that now those fingers are slightly sore when I bend them.
Anyway, the visit started with the usual blood pressure and weight test. Weight was the same as four months ago although for me I was up a kilo (then went down again and now up again - I hover within a kilo at the moment). Blood pressure was the usual excellent - 110 or 120 over 70 I think. Nurse said it was the same as last time, or more or less the same.
Then I spent some time trying to catch the eye of the other, more senior nurse: was she meeting my eye or was she avoiding me, because I know they have a meeting every morning and each patient for the day is discussed. What did she know that I didn't?
Then he saw me early, as usual, and to me he looked a little older. Guess we both are. Then he said well you know your tests are fine - and I interrupted in my usual rude manner to say - no, I don't - and he said the doctors would have told me and I was confused and he was referring to the colonoscopy and I guess he would have gone on to discuss the diabetes test but I interrupted again and said I didn't know about the blood tests. They're fine, he said. And suddenly life was fine again. (The blood tests include liver and breast cancer marker). In fact, I asked him, when he handed me the form for the next set of blood tests before my next visit, why it was one particular cancer marker and not another, and he said that it tested for breast cancer antibodies.
Anyway, then came the examination and he was pretty thorough, checking everywhere in the relevant area. Then I asked about exercise and he asked if I had enough energy to do more - I think he was joking - and he said as long as I felt fine. But not to increase intensity. Just the duration.
And I walked out feeling like a million dollars!!!
Looking at my blog the other day, I realised it is not clear from the heading that I am now fine. In fact, worked out after this visit, that it is now more than 2 years that I don't have cancer in my body. Cos it went away completely after four chemo treatments and that was in about April 2009 so now it is more than two years of, to use the American term, NED (No Evidence of Disease). May it continue.

Has it taken over my life?

2011-06-12T19:12:00.003+02:00

The happiness I felt at being told I was ok on Friday, after seeing The Tango Man for my four-monthly check-up, was kinda overtaken by what The Yoga Man said to me later that night.
He seemed really reluctant to discuss it - I was overjoyed, so relieved that I was still ok and also that I can now increase my cardio exercise by 5 minutes - that I was kinda miffed he didn't seem to share my enthusiasm and relief.
"Do you realise that not a day goes by when you don't talk about cancer?" he said. I was shocked. It doesn't feel that way at all. Yes, I was anxious about my check-up 'cos when I was diagnosed I felt perfect and had just had a mammogram and scan and been given the all-clear (under two months before I found a lump) and so I know that feeling fine means bugger-all; and yes, I have been anxious about developing lymphedema 'cos I am borderline and did spend about 6 weeks last year wearing a damn compression sleeve. But I have recently reduced my appointments with The Lymph Lady to every second week and feel that I am getting better about my anxiety re my arm.
Furthermore, it feels like the treatments like chemo and radiation and herceptin are becoming more of a distant memory, I barely complain about tamoxifen, so what's the big deal? I thought I am handling it fine.
Wrong, it appears. Every single day I say something about it, it appears, even if it's a "damn, I have to do my lymph (massage) now" or "shit my arm feels awful, look it's thicker here, what do you think?" or "oh no, listen to what happened to XXX... on her (cancer) blog she says.....".
Then to top it all I went to a breast cancer awareness breakfast today. Not that into going and find it ludicrous to dress up in pink for the occasion and wonder where the money actually goes, but I do enjoy it I guess although sometimes the speakers annoy me as they talk rubbish (the breast surgeons appear to the worst), but my sister goes with her friends and how they all know I have had breast cancer so how can I not go? And listening to a man talk about having had breast cancer was interesting.
Anyhow, The Yoga Man did ask how the breakfast went, which kinda surprised me.
However, it does appear I am not so "over it" as I thought. Oh well...

Am fine!!

2011-06-10T14:35:00.000+02:00

Saw The Tango Man and I am perfect and can up cardio by 5 min!! Soooooooo relieved. Felt sick driving here to oncology centre.
Sent via my BlackBerry from Vodacom - let your email find you!

went to the oncology centre today

2011-06-08T22:54:00.000+02:00

Had to have blood tests, prior to my appointment with The Tango Man on Friday. Quite a big deal to go to the oncology centre again. It's been months.
Feeling kinda sick re Friday's appointment. One of the scariest things about breast cancer is that how you feel is no indication. When I got diagnosed about two and a half years ago, I hadn't felt better in years.
I know there are cancers where the lousy way you feel drives you to the doctor but it wasn't like that with me.
So I can only pray that I am fine.

Yahoo to yoga!

2011-05-31T22:31:00.000+02:00

I have been doing yoga for a while. Always been vrot (Afrikaans for awful/lousy) at it but enjoyed it. Then I got an inner ear infection and my balance went wonky and I couldn't do, then I got cancer and although the doctor said I could do it and gym was banned, there was no ways I had the stamina to endure a 90-minute class. In fact, I ended up going back to gym halfway through radiation, but still remember that first time I went back to yoga - they wanted me to stand, and move? Thought I was gonna fall over...
Anyway, now that I am highrisk/borderline lymphedema, have been informed that yoga is good for me so make an effort to be there every Tuesday night. It is only possible to go once a week with my teacher if you are a beginner, and being not brilliant at it and with such an erratic experience of it, that is what I am.
The lymphedema risk means I cannot put wait on my left arm. I can do dogpose as the weight is spread evenly over the arms and legs but not handstand etc (not that I could do it anyway!).
Well tonight had a breakthrough. Did a shoulder stand. Yes, I did it the "old person" way, using a chair as a prop, but I did it. And yes, after a while I asked how to come out of the pose, but I felt liberated - physically - and in fact still do, although it's about two hours since my class finished. Cannot wait to do another shoulder stand next week. And the upside is that inversions such as shoulder stand are excellent for the lymph. Must find out if can just do that at home, or what to combine it with in which order......

Readers in Slovenia

2011-05-26T22:09:00.000+02:00

According to the stats on blogger (incidentally the stat counter on the blog, the one that sends me weekly updates, doesn't work), but anyway, the one which is on blogger, shows that the most readers of this blog are in the United States, then South Africa - where I live - and then Slovenia. How did that happen? So if you reading me and are in Slovenia, please tell me how you chanced upon my blog. So curious. Don't know anyone there. And it really is far from here.
Anyway, wanted to write about my elbow. My inner elbow. It's sore. If I touch it, it feels bruised.This kind of thing often happens but when I mention it to The Lymph Lady (often parts of my arm,like my inner elbow, hurt when she massages me), she seems unconcerned. But it must be from the lymph.
Anyone out there who has lymphedema or who is bordeline/high-risk lymphedema also experience such things? Hardly a calamity. But again, I am curious.......

being a big gal - lol!

2011-05-23T14:46:00.000+02:00

I have done it. Cancelled my appointment with The Lymph Lady for next week cos my arm was better today and cos I am only going every week cos of my anxiety re my arm.
Feel very brave - told her I might phone her up on Friday and beg for an appointment any day, any time, any venue (she works in three) - bugger deadlines!!
Lol!! Let's see how it goes.
Need to watch my weight though. Was down to 0.6g above the weight I was when I was diagnosed two years ago (thanks to smart dietician have lost most of the weight I gained from tamoxifen), but now am up a kilo - been there for a while, a week or two, but really need to slash it down again.....
Oh well..... need to save some money, well, put it this way, need to cut down on expenses....

what difference will four days make

2011-05-22T22:48:00.001+02:00

I did a silly thing the other day. Phoned the oncology centre and asked if I could bring my appointment to an earlier date.

The Tango Man is going away - there is an oncology conference in Toronto, wonder if he is going there - and I knew he was going to be away for a while around this time 'cos initially my appointment was later than I wanted. He had told me to come in four months' time and it was scheduled to nearly five months' time.... but anyway, I got an appointment four days earlier. From the 14th to the 10th. Big deal. But keeping it that way even though workwise it's not the best day for me to go.

Spoke to someone I don't know and they didn't ask why I wanted it earlier. Thought if I see The Tango Man's sidekick, the Oh-so-skinny-one, he might decide than I don't need to see him too. That is what happened when I saw him in an unscheduled quickie visit, when I had swollen lymph from my then undiagnosed tickbite fever, and then he said I didn't need to see him at my scheduled visit a few weeks' later.

But I would like to have seen him. But then guess it's good if your oncologist doesn't want to see you - you're clearly ok and guess it's now time to stand on my own two feet.

Needless to say, however, am very aware that my appointment is coming up. June 10. Afternoon.

surprised at my own reaction

2011-05-18T00:33:00.000+02:00

Phoned the oncology centre today. Hope it's not just a coincidence, but ever since I did the Geeta Iyengar open day - where we did have to stand for aaaaages with our hands up at shoulder level - I have had pain in the area where I had cancer. Well, kinda in the general area cos my left arm has also been a little sore lately...but the pain has been worrying me. For two days after the yoga which was on the 7th, it was bloody sore. Now it has toned down, but it is still there and does not seem linked to movement alone.
Now The Tango Man told me that radiation can affect the skin for up to eight years and I am hoping that the yoga just stretched some tissue. And I still have mobility - eg, did yoga tonight and it felt a little sore, but not in a bad way.
Anyway, phoned the oncology centre today. Am due to see The Tango Man on June 14, so thought maybe I could bring it forward or if necessary see The Skinny One, the other oncologist, in the interim. So I phoned and asked to speak to J.
J is a great nurse there: super experienced, honest, fun and trustworthy. "She doesn't work here anymore," I was told. Whaaaat? Apparently she was ill, needed a stomach op, and they haven't been able to get hold of her since; been a few weeks now. The scary thing is that they seem to have written her off: "she doesn't work here any more," was the first thing I was told. And I do know that she has previously been unhappy there.
Besides worrying about her, and if she is ok - I almost feel like going to see her at her home to see if she is ok but I don't know her surname although I could find it out) or her address beyond a general area - I also, and this is the scary/worrying part, I feel lost without access to her.
You see, at this oncology centre you cannot contact the oncologist unless it's an emergency. Fair enough. But there have always been good nurses to speak to who could guide one. There was Erica, the head nurse, with about 10+ years' experience, but she resigned. J resigned on the same day but was talked out of it. Now she too has left.
And I feel sad at the departure of these maternal figures in my life. Those with knowledge. Those who can advise even if what they say is harsh.

almost 11.30pm

2011-05-16T23:25:00.000+02:00

Almost 11.30pm and still haven't moved from the couch. Reading an email from my former university, UCT (University of Cape Town), which states that it was placed 107th in The Times Higher Education rankings THE), the best it has ever done. This is also no doubt the highest ranking in South Africa, as it is always ranked above the others. I loved being at UCT. Aah, so much to do and still wanna try to get to my book - lol! - reading this year's Booker prize winner, Howard Jacobson's The Finkler Question, and loving it!

sometimes it's hard to write

2011-05-16T23:05:00.001+02:00

I used to write a lot. Then I felt that I spent every night - when I came home, which was usually after going somewhere after work such as an art exhibition opening, the theatre or dinner somewhere, or just my Tuesday night yoga which ends at 8.30pm - in front of the computer, so I tried to restrict the writing to about once a week. Maybe twice.
Anyway, now I am scrunched up on one of the couches with my laptop and wondering ... do I moan yet again about my arm?
The last three weeks it hasn't been great but still, it's great if I don't have to wear a compression sleeve, is my mantra. It's just that the top of the upper arm went up about 5mm from last week, so it feels pretty heavy but then it went down about the same measurement at the elbow and so overall it's fine. Am grateful for that but at the same time it doesn't feel great.
It might not seem like it from this blog, but I am definately less anxious about my arm than I used to be but it does wear me down a little. Went to a game lodge over the weekend and we had an early morning game drive - and I ummed and aahed and then decided to get up extra early - 4.45am - to do manual lymph drainage massage beforehand.
And now wanna go cos still need to do "my lymph", as I call it, even though I do only a 10 minute one at night (and a 30-40min one in the mornings).
Think I am just a little tired.....but must say, enjoyed my break at the game lodge and wow - been going away a lot in the past month: to Cape Town, Lesotho and now the Pilanesberg.
Does turn everything upside down though, not least my eating patterns, so in a way good to be back and settling down again... g'night!

Chatting to The Lymph Lady

2011-05-05T22:21:00.001+02:00

Because I have been waiting for a month to pass without major fluctuations of the size of my left arm (well, within a certain dependable range and less than 1cm at a time, mostly just a few mm), I see The Lymph Lady every week, usually on Mondays at 9.30am, straight from a session with my biokineticist at gym.
And so we chat during the 45 min session, and I guess she has become like my therapist (well, not really, but we chat).
Anyway, this week we spoke about an email I had sent her and which she said she hadn't read yet. It was from the National Lymphedema Network (NLN), an American association she had told me about (there isn't a lymphedema network in South Africa and no, I don't want to start it, well I don't think so.)
Anyway, it is about early detection of breast cancer related lymphedema and The Lymph Lady told me that in the US, a special test is done three weeks post surgery to detect swelling, as she pointed out that there can be excess lymph which the tape measure does not detect.
Then, if this test is positive, the person is put into a compression sleeve for 4-5 months, and does manual lymph drainage massage at home. After this period, the risk of lymphedema is largely dimished.
Yet here in South Africa, doctors do not take measurements prior to breast cancer treatment (I had no surgery but the radiation has made me borderline/high-risk for lymphedema) and when The Lymph Lady suggested at a meeting of cancer practioners that patients be sent to her for a session to advise on what to do to prevent lymphedema and take base level measurements, she was told by this surgeon I didn't like (think I called her Mother Earth, well, she thinks she is mother earth and how interesting that I mistakenly called her an oncologist and had to delete it cos she behaves like she is one....), anyway, Mother Earth told The Lymph Lady that she was just looking to make money. And The Lymph Lady is totally incredulous about this!
Meanwhile, my arm feels a little like it is 'sticking' to my t-shirt, not a good sign, and here is the email I received from the NLN which I sent to The Lymph Lady:

Dear Colleagues and Friends of the NLN,

It is with great pleasure that I am forwarding the latest NLN Position Paper "Screening and Measurements for Early Detection of Breast Cancer Related Lymphedema" written by the NLN Medical Advisory Committee in response to recent developments in breast cancer related lymphedema. The NLN remains committed to the early detection and treatment of all types of lymphedema.

The urgency in writing this paper for breast cancer related lymphedema is due to evidence indicating that early detection of latent breast cancer related lymphedema offers an opportunity to identify and treat lymphedema more successfully at an earlier stage. The National Accreditation Program for Breast Centers (NAPBC) has adopted the NLN guidelines for early detection of breast cancer related lymphedema. This NLN Position Paper allows the guidelines to be available to all patients, providers, and advocacy groups regardless of where breast cancer treatment is received.

This is vital new information for breast cancer survivors at risk for lymphedema. Please disseminate this document to anyone with a need to know the latest recommendations for breast cancer related lymphedema. We encourage patients and advocacy groups to give the document to their medical providers. Medical providers seeking more information regarding these guidelines can contact the NLN at nln@lymphnet.org.

Additionally, we would like to share with you a new book "Dr Vodder's Manual Lymph Drainage: A Practical Guide," written by Hildegard Wittlinger and other family members. The book provides excellent review references, a practical guide with detailed illustrations and photographs, and is a great new edition for new student and seasoned certified LE therapist, and physicians. You can read the book review for more information. "Dr. Vodder's Manual Lymph Drainage" can also be order through the NLN store.

If you have additional questions, do not hesitate to contact the NLN office at (415) 908-3681.

Respectfully,

Saskia RJ Thiadens, RN

Executive Director, NLN

the ups and downs of "high-risk for lymphedema"

2011-05-04T22:22:00.000+02:00

Well saw The Lymph Lady today and my arm was up - quite a lot - 8mm on the middle, upper arm. Also up a few mm at the elbow and a little at the very top but down 1mm at the rest and cannot remember middle lower arm. So no wonder have been aware of my arm.
As I told The Lymph Lady today, had decided if my arm was ok, was going to cancel next week's appointment and see her only every two weeks, and eventually once a month.
But now it's back again next week, and just gotta pray it goes down. In the meantime, it's lymph massage twice a day as per usual to ward off that damn compression sleeve.
Had flu while I was away and could not do manual lymph drainage for about a week (it makes the lymph worse), so guess that might have caused it. But the increases still within my normal fluctuating range, she said. Bloody nerve-wracking although not freaked out. Just an annoying and anxiety-ridden nuisance.

a quick word

2011-05-04T00:20:00.000+02:00

My goodness. It is past midnight and am seeing The Lymph Lady at 8.30am tomorrow (a change of plan, as usually at gym then) and still have to do lymph massage now.
Just to say my arm is not feeling great. Not too bad and did wear a shirt rather than a t-shirt today (haven't worn a shirt in years) and it felt ok, but did feel slightly thicker in the upper arm when got to yoga tonight.
Just praying that it is either in my imagination only, or else it's a minor aberration. As much as it is winter here now and so wearing a sleeve wouldn't be as bad as if it was summer, am doing a yoga workshop all day on Saturday and would be most perturbed if had to do it in a long-sleeved t-shirt and with limited mobility cos of the sleeve. Ag, as The Yoga Man says, I need to distinguish between what is "ok feeling funny" and "not ok feeling funny" as often I swear my arm is swollen and then The Lymph Lady measures it and it's fine. Oh well....

that's how it goes

2011-04-30T17:58:00.003+02:00

THE MAGIC OF MORIJA: The church at Morija, Lesotho, built between 1847 and 1857, with the present distinctive steeple added in 1905

Just been away for a fab holiday in Lesotho. Really enjoyed it as this time got to see far more of the country than my usual Maseru, the capital. Went to malealea lodge for two days, where the only sounds are the clinking of cowbells as the herds pass by with their herdboys (what is the word for them)? Really lovely.

RESTING PLACE OF A SAINTLY LEGEND: The grave of Anna Mantsopa, said to have died at 111, at St Augustine's Priory outside Ladybrand, South Africa

Then on the way back stopped off at St Augustine's Priory just outside Ladybrand to view the cave and grave (see pic above) of Anna Mantsopa - who was a prophetess in the mid-1899s and advisor to Moshoeshoe of the Basotho people - best to read this article. Loved the place - very still too. Oh, and also went to Morija in Lesotho, which I have been wanting to go to for ages, all because I read Tim Couzens's Murder at Morija - and despite everyone telling me: "ag, it's just a village!", it was fascinating and far more than just a village. I even went to see the house where the murder of the missionary took place - it is now a community radio station and on a second visit went to see Maeder House, the oldest structure in Lesotho, built in 1843 if I remember correctly.

CAVE CHURCH: Inside this cave (see gate at end of path) at St Augustine's Priory, where prophetess Anna Mantsopa was said to have lived, is an altar with burning candles

Anyway, the reason for the somewhat miff and dejected headline to this post is that someone else I have been following in the blogosphere has died. Pateeta of Shades of blue had ovarian cancer but her treatment was not helping. It kept spreading, then she had a heart attack, then a pulmonary embolism and decided to stop the chemo. But she was damn gutsy. I only followed her for a short time but the inevitable happened - in her case, her daughter Melissa wrote on her blog to say she had died. What upset me was that she was agitated, nervous and ill at ease before she died but they gave her anti-anxiety meds and then she died peacefully. All so damn sad. Read Pateeta's blog - ovarian cancer's a bitch, she wrote, but so am I!

"Not even cancer could stop u"

2011-04-20T21:27:00.001+02:00

Was on gchat now, with a former colleague who has moved to Port Elizabeth. I told her I was at home tonight. She responded: "lol that is bizarre! not even cancer could stop u". A short while ago I also wrote a comment on Joanna's blog, lifehasitsupsanddowns in which I reminisced about battling to stand up for long periods at art exhibition openings, or walked slowly from my car to restaurants (realise the difference only now that I can bounce along quickly) - but at least I was there!
So Karen, thank you for saying that "not even cancer could stop u". Well, why should it? Only in the week (week two post chemo) when my immune system was compromised did I not go to public places other than work, as advised by the doctors.
Yes, cancer didn't stop me much - nor should it stop anyone else.

PS: So grateful my arm is ok. Feels awful but saw The Lymph Lady today, and it's fine. And lost 1kg already.

Eating and sleeping - or not

2011-04-19T22:49:00.000+02:00

I don't sleep much. Don't have a sleeping problem. Just tend to go to bed at midnight or 1am, and then wake up at 6.10am or 6.30am or sometimes only at 7am to do manual lymph drainage massage for my high risk/borderline lymphedema. So that gives me about five or six hours sleep. All fine.
Until last Thursday. Cannot remember what time I went to sleep but think it might have been very late, then woke up early to go to a work breakfast. Now the function was at a top 5 star hotel but the food was really crap - and yet I didn't stop eating: yucky processed-type cheese slices, a cheesy mini-quiche, mediocre to awful spanikopitas and cannot remember what else. Then I didn't stop the entire day, starting off with the miniature chocolate Easter bunnies in the press pack.
I gained a kilo. Then Saturday was equally exhausted as woke up early to do lymph massage before leaving early for the airport to fly to Cape Town. Then again didn't stop eating 'cos was soooo tired. Now my weight is up 1.6kg. Not happy. Hope I have lost some today. Now I know: I need about six hours sleep and if I have less than five, I overeat like crazy and cannot afford to do that, not with my arm being so sensitive to weight gain.

Yahoo! happy to report that all is well!

2011-04-04T14:03:00.001+02:00

Am totally delighted that the colonoscopy went off well and I am fine. No polyps, nothing. At first he said come back in 10 years - then he checked my file and saw I have a family history and said, Ok, 5 years's time.
Delighted. And as delighted to be able to eat what I want. Now nibbling Woolworths's low-fat prawn cocktail. Delicious!! Just doctored it with a strong chilli sauce and worcestor sauce. Oh and lost 2kg since Thursday but am busy putting it back on... eating what I want today. Wore a special bright pink band on my left arm (which The Lymph Lady gave me) warning of Lymphedema and no blood pressure, IV, etc on that hand but all was fine.

Preparing for a colonoscopy

2011-04-03T11:50:00.000+02:00

Haven't enjoyed the last few days so much 'cos been preparing for a colonoscopy. When my sisters had them, they just had to take the laxative stuff from the late afternoon but trust me to go to a doctor who requires the whole number - no red food for three days before plus no salad, no fruit, no veggies....
Well, had no idea what life was like without eating fruit. Had I not had a diabetes test recently - the whole number, the glucose drinking one which takes hours - would have been convinced I had a sugar craving. Well, am allowed clear apple juice so drank about three little liquifruits a day.

Cannot tell you how much I battled with the eating. I eat salad every day and lots of veggies. I was allowed "well cooked pumpkin" or "well cooked peeled potato" so tried the pumpkin. Usually steam it, or bake it, so that it still has substance; this time steamed it till it was pap (Afrikaans for soft), added some cottage cheese and some white pasta and found it dreadful and the cheese, although low-fat, too rich. Maybe there was too much cheese. So swopped to white bread, which I discovered can be nice and have been eating that with boiled eggs for the last few days. As well as spaghetti with plain low-fat yoghurt thrown over it (instead of cream). Quite like that but miss my pickled cucumbers, mustard, spices.. and essentially the freedom to eat what I want when I want (as much as I do watch what I eat, I know I can eat anything...).
The first day lost a kilogram - no fruit plus couldn't face the supper I had brought with me and was going out straight from work - and now am 0.4kg up from the weight I was when diagnosed with breast cancer two years ago. I like feeling thinner but cannot wait till all is ok and I can eat again. And praying all is well with the colonoscopy.
My mom died five days after being diagnosed with colon cancer two years ago - even though they said she was a perfect candidate for an operation and scheduled it for a week later - and two of her siblings died of it too although her brother lived with a colostomy bag for years and was very active, playing tennis and travelling, and both died in their 80s (my mom was 77).
According to the gastroenterologist I saw, genetic predisposition to colon cancer means you get it by 40 and this was in old age but that I should have a colonoscopy anyway.
My two sisters, both younger than me, had it shortly after my mom died but as I was having chemo and other treatment, it was deemed not necessary (by my oncologist). When I finished all the treatment, herceptin et al, I broached the subject again, and he said "Yes, within six months". That six months ended in February so doing it now.

inspirational people

2011-03-29T21:55:00.001+02:00

I have always thought I was a paragon of virtue 'cos I exercised throughout chemo. Lol! I did low-energy exercises, the type which could even be done from a bed, a programme I got from the biokineticist I was seeing for a sore knee at the time: lots of leg stretches using a theraband; lifting my leg 20cm off the ground and holding, then releasing it slowly, that type of thing; interspersed with a few therapeutic/restorative Iyengar yoga poses. What a joke. Listen to what Joanna of Colarado in the US did: she played tennis throughout chemo for breast cancer, stopping only for four days after each treatment, Life has its ups and downs - about playing tennis throughout chemo.
Ok, my excuse is I was banned from the gym (ie exercise) from BEFORE I started any treatment for my breast cancer but really, looking back now, I battled to walk to the mall from the office, which is about a 5 minute walk, so I don't think I could have managed gym. And when I did go back to gym, halfway through my radiation treatment, the first time I walked s-l-o-w-l-y on the treadmill for three minutes - and was wrecked. And then it took a while before I went back to yoga. So the idea of tennis and all the energy involved in that.... bravo!

all going well

2011-03-28T22:14:00.001+02:00

So chuffed to report that my weight is going down. Was down a kilo this morning. Didn't eat my lunch today - I forgot, something which never happens - and didn't binge to make up for it and so feel I am on my way to losing the weight. Well, only 0.4kg to get back to normal, and then start the slow descent to losing 10kg....
My arm, however, is not feeling so great. But otherwise I am feeling fine. Loving gym with my new increased energy allowance (does that make sense? what I mean is that I am allowed to do more cardio now) and generally having fun.
Went to a brilliant book launch tonight - Women - South Africans of Indian Origin by Devi Moodley Rajab with portraits by Ranjith Kally. A real celebration of these strong women - "The spirit of questioning and refusal to submit still burns bright"... is an extract which introduces the "emergent voices" section of the book.

Hopping on and off that damn scale

2011-03-27T11:42:00.001+02:00

Having a weight hassle. Have been so so chuffed that despite the damn tamoxifen which made me gain about 5-6kg without eating more, I had managed to lose most of it by going to this dietician and cutting down severly on what I eat, mostly far less protein. That way, I was down to 1.4kg above the weight I was when diagnosed, and the only reason I know that is cos The Tango Man kept telling me! Ja I know I wasn't thin when I got diagnosed, but at least I wasn't that fat and those extra kilograms had made me miserable.
Well, all was well until this week. Went out with my friend Carlos and we had a big out. All fine and well. We ate lotsa ribs and a baked potato each... all fine and well.... usually, these days, when I have a pig out, just one day of normal eating and I am fine. But not this time. Have actually gained more weight since Thursday's meal and yesterday was so miserable that I went on a binge - ate crisps, a frozen yoghurt and then was easily talked into having a cream pasta for dinner.... oh and just remembered had two slices of cheese focaccio during bookclub....
Ok. Back to a super-strict regime cos of course am getting worried about my arm. It felt dreadful last night... well, what I mean is that my shrug - is that a commonly used word worldwide for a wrap-over tie-in-front cardigan-type thing? - felt a little tight at the upper arm.
Sjoe! Feel much better having written all that down. Can see it in perspective now. And maybe, just maybe, will stop hopping on and off that scale in case it's been a misreading!!
Otherwise, am well. Just shitty, drizzly weather here in Joburg. Which might mess up the Francophone Day at the Alliance Francaise I was planning to go to. Will still probably go - it's an annual event and fab - but looking at that grey sky...
Meanwhile, marvelling that Joanna played tennis throughout chemo and radiation... read her blog life has its ups and downs and be inspired..... love such positive stories!

Visiting The Lymph Lady

2011-03-23T23:13:00.001+02:00

Visiting The Lymph Lady is now a weekly occurence. Find some of what I see and hear quite horrifying. Today there was this woman, thin, particularly thin, who had had her arm bandaged. "Three days into chemo,' said The Lymph Lady when I enquired about it, "and she got lymphedema. Yes, chemo can set if off, if you're prone to it," she explained, saying the woman had metastatic cancer so had had initial treatment which had set her at risk quite a while back. Today was her first visit.

About a month or so back The Lymph Lady told me about her patient whom she had first treated a few years back, then she went camping/into the bush, got bitten by some insect and voila! instant lymphedema. While visiting The Lymph Lady she said she had red bumps and according to the Internet that could be leukemia and that her husband had laughed at her, telling her not to diagnose herself from the internet.
When I next enquired about the patient, The Lymph Lady told me she had died three weeks later, from leukemia.

Feeling a bit down. Not all the time. Just a little frustrated, I guess. Not too serious.

Oh been thinking: is there anyone else out there who is high risk for lymphedema? Would love to hear from you and how you manage it and deal with the anxiety and so on. Ja, my arm was up today but apparently within range.

all the fuss re potential radiation leaks & iodine & cancer

2011-03-21T14:52:00.000+02:00

Been fascinated to find out what the fuss is re potential radiation leaks in Japan and the rush to take iodine tablets to prevent cancer. Well, trust Mary Shomon's thyroid site to have the clearest info about it. Best of all is the FDA's (US Food & Drug Administration's) 10 FAQs re potassium iodide

Most interesting is this: Potassium iodide ( KI) works only to prevent the thyroid from uptaking radioactive iodine. It is not a general radioprotective agent.

really getting into yoga

2011-03-15T22:43:00.000+02:00

Went to yoga tonight and, not for the first time, thought about how it's become one of the highlights of my week.
Not quite sure how I got into it, but think it was from listening to The Yoga Man and my friend Aubrey from London talk about it - they are both Iyengar yoga teachers. Now I was into tai chi - used to go to about five classes a week and do a pose or two every morning. Ja, well, no fine, did the poses all wrong and hurt my damn knee, well kneecap, which went out of alignment from extending my knees over my toes when in a squatting position.
Anyway, no soft tissue or cartilage damage - had one of those dreaded MRIs (my absolute worst, well, coupled with the Z-sampler or whatever the endometrial cancer test is).
Anyway, started going to yoga and did both until my knee gave way. Then I got sick and when I asked The Tango Man if I could do yoga, he said yes, but really, people have no idea of how much energy is involved. There was no ways I could do yoga while having chemo although I did do restorative yoga.
Went back to gym long before I went back to yoga (when I was halfway through radiation) and now I go religiously once a week (there isn't another beginner class in the evening with my teacher).
Part of why I have to be so disciplined about it is that it is good for my arm, which is high risk for lymphedema. But have to admit, if I wasn't doing at least 50 minutes manual lymph drainage massage every day, would do some yoga at home too. But with early gym three times a week, work every day, and going out almost every night, adding yoga to the mix would feel a little insane.
But now I really love yoga. Although admittedly I was hungry this evening and spent a fair amount of the class planning what I was going to make for supper afterwards (and I didn't cook the mushrooms after all but instead baked hake and ate last night's roast veggies). I go and let the teacher's words control me as I do the asanas as directed. Wonderful!!
And my arm is ok. Well, it's up again but as The Lymph Lady said today: it's not about going up, it's the trend and so far the trend is fine cos if it goes up, it also goes down the next week. Plus I ate like a pig this weekend (went away to Lesotho) and so temporarily gained a kilo.....
To get back to yoga, I always remember how in my first class post-cancer, I told the teacher how I might have limited mobility in my left arm because of the radiation. Well, I am chuffed to report that everything is fine mobilility-wise, cos have been doing arm exercises from when I was having radiotherapy... and now, turning down all Tuesday invites has been well worth it - yoga makes me feel great: energetic and enthused.

great website

2011-03-11T19:56:00.000+02:00

"I believe that none of us should be limited by our disease, our treatment, or our survival."
This is a line from Julie Goodale's revamped website Life-Cise
Read it, watch her brief introductory video, read some of her links under "cancer and fitness" at the bottom - the one on lymphedema is great, for example - and sign up for her newsletter. I did.
By the way, Julie lives in New York, is a musician (viola player who studied at Julliard), is a specialist cancer exercise guru with all the relevant qualifications, and writes one of the best blogs - fitnessforsurvivors.
Read more about Julie Goodale.

this blog helps me

2011-03-09T00:05:00.000+02:00

When someone remarked in my yoga class: "Did I have oedema?" (she knew I had had cancer and was referring to my not doing a pose which required body weight rather than what my arm looks like), I immediately wanted to chat .... and then realised that although I say I am fine, and grateful all is ok, I actually have a desperate need to talk about what happened. Which is probably why I have this blog. It was just something I knew, the day I got diagnosed. I, who until then had hated all blogs, knew I wanted to start a blog. So here it is. I am pretty sure I am boring everyone cos I seem to have less readers - guess my major health obsession is now my arm and its borderline lymphedema - but it helps me a lot and hopefully, sometimes helps others too.
Which reminds me: is there anyone out there doing manual lymph drainage massage? I am very keen to know how often you do it, how it impacts on your life, how often you see an expert and anything else you wish to share.

What a celebration!

2011-03-03T07:02:00.000+02:00

Ever since I read her latest posting on her blog last night, I cannot stop thinking about Julie Goodale's wonderful way in which she is going to celebrate her 10th year of surviving breast cancer.
As she puts it, "So, on May 7, I'll be running a race to celebrate 10 years of not being dead." But being Julie, she of the indominatable spirit and determination, she is doing a 50-mile race, an ultramarathon.
"Run, Julie, Run - The Next Big Thing" is what she calls her posting on her blog fitnessforsurvivors.blogspot.com.
Read it. The exhiliration of what I feel about what she is doing goes beyond cancer-schmancer; it is about celebrating life, it is about overcoming any adversity and what a change from those who slump around feeling sorry for themselves. It is about how we deal with things that is important.
Meanwhile, I still have to do my manual lymph drainage massage and then get ready to go off to work. But work up this morning and thought: wow, Julie, you are something else.
By the way, Julie is a musician (viola player) who lives in New York and is also a qualified cancer exercise musician. Only know her from her blog, but what a gal! She speaks to me! Run, Julie, run!!!! I will be there in spirit supporting you all the way. Do it for yourself, do it for all of us.

Not diabetic

2011-03-01T22:42:00.000+02:00

Relief. Not diabetic. Can still taste the glucose in my mouth from the glass of 75% concentrate that I had to drink for it.
Am very glad I am not diabetic. Had enough illness in my life, what with overactive thyroid which was totally debilitating and messed up my life for five and a half months during which I lived in a blur, and messed up my eyes big-time with thyroid eye disease, and then breast cancer.
So very relieved.
But still have oral thrush..... wonder why.

diabetes test at crack of dawn

2011-02-28T17:50:00.000+02:00

Arm ok. Well, it was up - 3cm or was it 2? - at the very top and the other parts have not gone down although it was the top that made the t-shirt tight.
But as long as don't have to wear compression sleeve, I am happy. Just gotta get it down and don't know how. "You are doing all you can," said The Lymph Lady.
Anyway, now have to do for diabetes test tomorrow. It can take three hours as they give you glucose, wait, do a test etc etc.
Besides the fact that I don't wanna be diabetic - who does? - I am concerned as to how I am going to be there at 7.30am AND do lymph massage before I go.
Also, all those blood tests and no veins, thanks to the chemo!!
But that is all minor compared to what the test is for. I cannot believe I could be diabetic - really - as I can honestly say I eat so healthily and have for years and years, plus I exercise, plus there isn't diabetes in our family.
But I have had oral thrush to varying degrees in the past three weeks or so, and now have to say my mouth is dry. When Dr Diabetes Expert heard I had oral thrush and my GP had suggested a diabetes test, he agreed! And he is a world-renowned diabetes expert.
So it's dance umbrella tonight - cannot wait! - then to bed early (difficult but will try) to be up at crack of dawn to go the Centre for Diabetes and Endocronology for the test tomorrow.

panicky moment yesterday

2011-02-27T11:47:00.001+02:00

It's been wonderful weather here in Joburg. In fact, the weather here is generally wonderful: very moderate, mostly warm although can get down to momentary minuses in weather (but then only for part of the day, such as early morning/nights) and I don't enjoy the summer rainfall and thunderstorms.
But when it's hot, I tend to wear white; it's cooler. Yesterday put on a white skirt and a t-shirt I haven't worn in ages: white with a black floral print. It has three-quarter sleeves. So I was most unhappy when it started to "pull" on my left upper arm. After about five minutes, I changed to a cap sleeve plain white t-shirt but my upper arm still felt a little heavy.
Haven't got dressed yet today (still wrapped in a kikoy, a cotton Kenyan wrap ) so have no idea if arm is swollen or not. Even when it is swollen, at the most it goes up by 0.5cm so it's often difficult to tell plus I have developed a distorted perceptin of my arm. It always looks swollen to me. Sometimes I look at it and it appears huge.
Anyway, what upsets me is that I am trying so hard to be calm, an unhassled person. Then have an incident like my t-shirt appearing tight, and I feel in despair that I might have to wear a compression sleeve. It is the thought of that, the reality of that tight thing squeezing my arm, not letting me wear all my summer clothes in this lovely weather but having to boil in long-sleeved tops and being so restricted in what I can wear, which drives me crazy and turns me from a normal person into an anxious, unhappy monster.
Not that I spent the day moping. Far from it. Was so busy - breakfast with friends, then shopping for an engagement present, then to the Oriental Plaza to get some fabric and trimmings for something I am having made, then to nursery with The Yoga Man to get lawn for between the tiles, then some brief reading before dashing off to fetch my friend to go to Dance Umbrella - saw amazing Nigerian-born, Paris-based Qunus Onikeku (see the video and photos of his work & his blog) - then out to La Cucina di Ciro for dinner. So hardly miff. Now off to an engagement party and have a hefty report to read for a work lunch tomorrow to discuss how best to turn the research into a story.
Not sure if going to try the t-shirt again now. Seeing The Lymph Lady tomorrow anyway.
Oh and must add: delighted, delighted that six months post Herceptin, my nails are now tough - like the rest of me!

It's amazing what you can get used to

2011-02-22T22:18:00.000+02:00

Was thinking the other day. I remember being so upset when, at high risk for lymphedema, I was banned from wearing underwire bras. Now I have fantastic bras, or should I say, had fantastic bras. Mostly Warners, which is no longer stocked in South Africa because of their high cost, my friend brings them out for me from New York on her annual visits here. Plus I bought a pile when I was in the States.
"Take out the underwire," said The Lymph Lady. But it took me ages to do so. And some worked fine without the wire; others, especially those that tie in the front, didn't.
It was all such a big deal at the time. And now, I was thinking, it's nothing. I still have masses of bras, they are just more ordinary. And whenever I find Triumph bras without underwire - have found three styles, all fab - I buy at least one, or two.
It's like my father always says: "It's amazing what people can get used to".
Oh, and just a quick update: my nails! Suddenly realised this week that the nails on my thumbs are long, and hard!! It seems that six months post Herceptin ending, things are settling down. Fabulous!

Been kinda chilled

2011-02-16T20:57:00.000+02:00

Been trying not to spend all my time on the computer and to read more, plus also trying not to obssess re my health, so have had a few days break from blogging.
Healthwise am ok, although:
* went to the GP over my swollen glands and oral thrush. He acknowledged both and suggested I go for a diabetes test - at some point. My thryoid doc has suggested that too, but in October when I see him next, so will do it then. Luckily my mouth now seems fine. Went and bought that dreaded yellow gunge Mycostatin, used it once, and now the problem seems to have gone away. Thank goodness. Seems crazy to think I could have type 2 diabetes when I eat so damn healthily and exercise....So far, so good though;
* went to see the gastroenterologist about having a colonoscopy. It seems that the familial link is not really there, that those that have that type of colon cancer get it by 40 and my mom and her two siblings were in their late 70s or 80s when they died. Not sure how old my uncle Harry was though when he was first diagnosed but I know he had it for years and pretty sure was 80-something when he died.
Despite that, doctor agreed that I should have one. Dreading it. Cannot bear the thought of anything being wrong with me. Two things were hilarious though. As I cannot risk having blood pressure taken or a needle used on my left arm, which is high-risk for lymphedema, he suggested I wear a tag on that arm to remind him!Also, when he asked about my eating habits, I was horrified at how I knew exactly what I ate, down to having had 750ml of water that day already, one cup of green tea, one cup of chai tea... etc etc.... I explained: twice I have gained weight without eating more: once when I had thyroid and gained weight uncontrollably even though my thyroid was overactive and I should have got skinny; and more recently from tamoxifen although that is now under control. So I am hyper aware of everything I put in my mouth, both good and bad, and without feeling guilty, am just very aware...
Miss Daria and her blog, Living with Cancer. Strange that....I so enjoyed her positivity and her wonderful what-can-I-do-about-that-problem attitude to everything.
Meanwhile, am very busy. Lots on the go, what with Dance Umbrella and symphony concerts and, oh, work of course.In fact, the only reason I am at home tonight is cos the author's talk and dinner I was meant to go to was cancelled. Toyed with movies but then thought that a quiet night might be a good idea......

Z-Sampler all ok

2011-02-10T17:38:00.000+02:00

Got the results of my Z-Sampler - the horrible, horribly sore test/scrape for endometrial cancer - and it's all normal.
Monday going to see the doctor re having a colonoscopy. He wanted to do the procedure straight after the consultation but as I have never had one before, wanted time to prepare myself for it. Colon cancer is in the family and my mother was diagnosed with it about five days before she died - felt the lump on the Thursday night, saw doctor on the Friday, had a colonoscopy on the Monday, was told she was a perfect candidate for an operation, which was then scheduled for the following week - and died in the early hours of the Saturday morning, days before the scheduled op. Strange indeed.
Be that as it may, have had one other niggly health hassle. Got oral thrush over the weekend. Just like I had when I had chemo - although then it was worse as it spread to my throat. Had ceremoniously thrown away all that dreaded yellow gunge (Nycostatin) dotted around my home and workplace and work bag and gym bag quite recently, but had mouth wash recommended by the oncology centre and although it had expired in October last year, used it and two days later, it was gone. Feels like it is now back, but only slightly.
When I looked on the internet for causes of oral thrush, I felt suicidal but I know going to the internet for medical info, rather than respected websites, is dangerous so will wait and see.
The Yoga Man says I am obssessed with my health. Trying not to rush to the doctor for the slightest thing but it did save my life, I am sure, that I went to the doctor the same day I felt the lump, despite having had a mammogram and ultrasound less than two months before....
Anyway, cos am trying not be health-obssessed, have held off making an appointment after the gynae on Monday remarked that it seemed the ganglion on my hand was not a ganglion and I should see a hand surgeon, going on to recommend some. I cannot have surgery on that hand as it is the side which is high-risk for lymphedema but will ask The Lymph Lady on Monday for her opinion - she specialises in hand rehab..... one of her specialisations.
Otherwise, am very well. Chuffed to report that have kind of kept my weight down - am now up half a kg but now 1.4kg more than when I was diagnosed two years ago so not so bad considering I am on tamoxifen - and went to the symphony concert last night and off to three art exhibition openings tonight and then to a friend for dinner.

The dreaded Z-Sampler

2011-02-07T20:35:00.000+02:00

Last time I felt I had shrieked so loudly, I felt the whole of Linksfield Clinic - well, at the very least those on the ground floor buzzing around the coffee shop - must have heard me.
This time I thought it might be a bit better, cos I had had it before, and so was prepared and after all, I kept thinking, it's not like it goes on for ever.
Well, I just remember saying to The Prof (my gynae), "please stop!"
But of course he had to finish the procedure. And my tummy, below the belly button, did hurt like before, but not so badly.
Basically the Z-Sampler is like a pap smear but of the uterus. And it hurts like hell. Well, for me it does. But I need to have it done because tamoxifen can cause endometrial cancer and they need to monitor it. I get the results on Wednesday.

Feel like a new person

2011-02-03T21:21:00.001+02:00

Tomorrow is International Cancer Day and two years since I started chemo.

Somehow, since I have been given a clean bill of health, to the point where I can now increase my exercise and see the oncologist a little less frequently, I feel like a new person. I am now me, instead of someone with cancer or someone having cancer treatment or someone who had cancer.

And I am confident that today, at least, I am cancer-free. I pray it stays that way.

I am feeling very emotional about it all. So much so that I feel like throwing a huge party. Don't have the money to do so now; maybe later.

But starting the party vibe by taking cakes - probably chocolate croissants from Fournos - to the oncology centre tomorrow, both the chemo and radiation sections.

Incidentally, my arm is not feeling great but trying not to think about it and praying that it will go down by Monday, when I see The Lymph Lady.

Jubilation

2011-02-02T23:04:00.001+02:00

Last night I dreamt about The Tango Man, as I was scheduled to see him today for my three-monthly check-up. Also in my dream was L, my old school friend, who recently had a right breast masectomy after a recurrence of breast cancer 11 years after she had a lumpectomy, chemo and radiation.
Anyway, don't remember much about the dream other than it wasn't a nightmare and people watched me interact with The Tango Man from raked seating, which might have been outdoors, an experience I wasn't that comfortable about not being private.
The raked seating might be because I like theatre but cannot remember watching a show in such a setting recently, apart from Maynardville outdoor theatre in Cape Town but which has loose seats rather than the scaffolding of my dream. And I think I dreamt about him because I was so anxious about the pending appointment but was not really articulating my feelings, apart from on this blog.
Anyway, I am all fine. I knew my mammogram and ultrasound were ok, and my muga, but did not know the results of the blood tests. So all very happy. Well I was so happy afterwards I told the nurses: I could cry. But I didn't.
I enjoyed my encounter with The Tango Man who has turned out to be far more amiable and less intimidating than expected. As The Yoga Man says, he cannot be too friendly if he thinks you gonna die. Put another way, he warms up when he knows you're ok.
Besides gushing about how grateful I am that I am ok, and saying I will do whatever he says, even swing from the chandelier - then adding that I didn't think I could actually do that, to which he added that he didn't think so either! - this is what he answered to my questions.
I explained that I was fine, but wanted him to know a few of my side-effects/symptoms, because I think it is important to document things (so he knows what % of patients experience what), plus I had a few questions.
1) SWOLLLEN GLANDS IN MY NECK: He said they were soft glands and clearly a viral infection. He was unconcerned. Relief, cos when I felt them upon waking up on Saturday, it intensified my anxiety about today's visit, so much so I did not even write about it.
2) NAILS: My nails are thin and keep breaking. Herceptin or tamoxifen? Last time he had said herceptin as the trial for oral herceptin reported soft nails as a side-effect. Today he said tamoxifen should make my nails stronger. I then dismissed it, saying it would clearly improve, and I could live with it.
3) EYESIGHT: Had noticed my eyesight was deteriorating, not least when I went for my driver's licence renewal. Was it the meds? He seemed non-committal about answering that but said I should have my eyes checked. No, well, fine. No problem.
4) TAMOXIFEN WHEN MENOPAUSAL: I told him L, my old school friend, had said she was told that tamoxifen was not for menopausal women (have not had my periods since the chemo). He smiled, as if to say that was not true. So I am ok, right? Cool.
5) METALLIC TASTE IN MOUTH: I had had that recently. Meds? No, he said.
6) HOT FLUSHES. Wanted to tell him I was still having hot flushes from the tamoxifen and they seemed to be getting worse, but no big deal. He wrote it down.
7) ASPIRIN FOR BOWEL CANCER: My sister had asked me to ask him re aspirin as a preventative for bowel cancer. He said it didn't work if you had a predisposition towards it. I do as it's in my family. But if I wanted to take it, not more than 3 to 5X a week but to be aware that it had its own problems, such as causing bleeding and... I won't take it then, I said, as he seemed not to think it was a great idea (that's when the swinging from the chandelier comment came up).
8) THE MUGA AND EXERCISE: I asked him not to shout at me like he did last time ("Who said that doing more exercise would be good for you?" he had screamed when I had asked if I could do more cardio as walking to the shops from work was more energetic than what I did on the treadmill). Well, surprise surprise, he said I could do more. "You're fine, all your tests are fine, your bloods, your muga, your....". My biokineticist had said I was doing about 65% of .. and this I am not sure.. but it relates to my heart rate, and he said I could up it to 75%. So I want to do what I usually do on Friday and measure it, and then up it 10% accordingly. Was ecstatic about this. Now still thrilled, just a little tired.
9) THAT HORRIBLE TEST AT THE GYNAE:As tamoxifen can cause endometrial cancer, I had to have that horrible test of the uterus. I explained that there had been a discrepancy which we had discussed before: he had said it only needed to be tested once a year; the gynae had said every six months. Then he said, fine, do what the gynae says, and I said great, cos going next week.
Then we discussed my having a colonoscopy. Well I said I hadn't booked one yet but he had said I needed to have it within six months, and I said I was anxious about it. They put you to sleep, he said. It's the result, I said. You are having it to be preventative, he said.
And that was that. A brilliant visit to The Tango Man, whom I trust implicitly and adore and respect. I think it's important to have a doctor you trust. I am lucky. And lucky to be well. On Friday, international cancer day, it will be exactly two years since I started chemo.

my three month check-up tomorrow

2011-02-01T22:27:00.000+02:00

Had a fabulous holiday in Cape Town. Really enjoyed myself, going out with my dad a lot, eating at Overture in Stellenbosch which was quite an experience with its magnificent view of a "hidden valley", as the name of the farm describes; going to Maynardville open air theatre in Wynberg (why are there no pictures on their website???) to see a brilliant production of The Taming of the Shrew) and just generally having a good time. Oh, also went to The Duchess of Wisbeach (hell, they don't even seem to have their own website) which is oh-so-funky and oh-so-trendy and oh-so-f..-irritating for not having a portable credit card machine... and discovered (my dad's recommendation) the oh-so-fabulous Sotano in Mouille Point.
Anyway, part of the reason for this build-up is that I spend far too much time moaning on this blog, guess it's my outlet to do so, and I do not want anyone reading this to think I am just a misery who lives in a state of anxiety. For I do not.
Yes, I am anxious about my three-monthly check-up tomorrow. Yes, I am not charmed that my arm was up in a million places on Monday. Yes, am pissed off with myself that I gained 1.2kg on holiday - if I haven't lost it by tomorrow morning will be furious but then guess that the two bars of Chilli Lindt I just had won't do much to further that aim...And yes, not charmed that had swollen glands in my neck since Saturday although I think they might have disappeared today...
Anyway, things are ok. Sure will lose weight, sure my arm will get back to normal and just praying that all is well tomorrow.

Had my fourth muga scan today

2011-01-24T22:51:00.001+02:00

Had my fourth muga scan today - and quite astonished to read now that I was injected with a small amount of radioactive isotope before the scan. I dunno, maybe I am losing it. I know it takes place in the nuclear medicine section of the hospital, that it says "radioactive:everywhere as in the toilet there, plus this is the fourth one I have had and have done lots of reading up about it - but did I forget? Or was I too concerned with the score?
Part of what can be detected from a muga is the rate at which the heart emits.
Prior to my treatment for breast cancer, I was sent for a muga to get a base reading.Cannot remember exactly what I scored but it was in the 70s. After chemo (and radiation???), it went to 65 and after herceptin, to 60. Today it was 62 and the doctor there said all was looking good. No dilation - but not sure what that means....
This is why one has a muga before and after breast cancer treatment
I am not certain if the 2 point difference means anything but am glad that it is moving up again.
The radiologist who did my mammogram and scan last week said if the damage was caused by the chemo, it is irreversible; if caused by herceptin, it will revert back to normal. So he said I should go up to 65, which was my score pre-herceptin but it didn't.
I see the oncologist next week so he will clarify matters.
Anyway, was not unhappy.
Learnt something about myself, well, The Yoga Man pointed it out and it's true. After a stressful situation, I eat. So my compulsive eating is post stress. Must have been hassled re the muga cos afterwards, ate and ate. First some Jerusalem dates (roasted dates, yummy) and then a frozen yoghurt and then a piece torn off from the gruyere cheese I bought to make a marrow and tomato gratin for dinner.
Well, what I really wanted to say is that I got chatting to a woman while waiting for the scan. She was there cos her husband was having a PET scan. He has prostrate cancer which has spread to the bones. Has had cancer for 11 years and is now on phase 3 of a trial, based in the US but tested in Switzerland, and sees the same oncologist as me. Also thinks he is fabulous! Part of the trial is that he has to have regular PET scans -- every three months. And although he looked pretty well to me, she said he was in hospital last week.
Impressed that we South Africans are eligible for such trials and that my oncologist is part of that. I know there is a research unit at the oncology centre and must say, I do know someone who went on a trial here with the same oncologist and is now very well.
Makes me wonder if anyone in South Africa was on the same trial Daria Maluta was on. Very possible. She died on January 22 from liver problems caused by the treatment which ironically did shrink her tumours. Opened Facebook and up popped the birthdays - it would have been her birthday today. Not 100% sure but think she would have turned 50. Or 49. And Facebook can be so sickening. Many of her "friends" have wished her "happy birthday - and many more", not knowing that she has died.

Daria ... one hell of a special lady

2011-01-23T12:21:00.002+02:00

Daria Maluta has passed, writes her husband Don on her blog daria-livingwithcancer. She was one hell of a special lady who lived the last few years of her life with metastatic breast cancer. I never met her - she lived in Edmonton, Canada but I felt like I knew a part of her through her blog. Read it.

And read this blog too, for just one example of what she meant to us out there.

And read this, one of her earlier postings, which another blogger has posted in tribute to her.

The blogasphere is abuzz with tributes to Daria; she touched us all. I am reading them but too upset to say much more.

metastatic breast cancer

2011-01-22T11:23:00.000+02:00

Metastatic breast cancer is cancer that has spread to far off sites in the body. It's what Daria of daria-livingwithcancer has and now she is moving to a hospice - the medical trial drug she was on shrunk her tumours but affected her liver and now she is dying...
Julie of fitnessforsurvivors has written an interesting post and has directed readers to an article in the New York Times this week which deals with metastatic breast cancer.
I like this quote at the end, made by Dr Suzanne Hebert, an optomotrist in Connecticut:
"Dr. Hebert says that while the pink-ribbon campaign has raised awareness about breast cancer, it masks a relentless killer.
“People like the pretty story with the happy ending,” she said. “We don’t have the happy ending.
“You always hear stories about women who ‘battled it’ and ‘how courageous’ they were. Cancer doesn’t care if you’re courageous. It’s an injustice to all of us who have this. There are women who are no less strong and no less determined to be here, and they’ll be dead in two years.”
Ja, I don't do the pink ribbon thing. Would feel most uncomfortable wearing on although I would not hesitate to wear a red ribbon for HIV/Aids.
Do read Daria's blog if you want to inspiration on how to tackle adversities. She is too wonderful and I am going to miss her and her blog postings. Read the comments on the latest ones, in the last week or so, and you will see how she has touched so many people. Then read some of her earlier postings (I did, the other night) and you will see how her writing reveals an energy that she has not had for a long time, but the determination and resilience and practical approach has never left her. She is moving to a hospice within days...
And read Julie's most recent posting on pink ribbons and Daria and read the New York Times article on metastatic breast cancer.

My thoughts are with Daria

2011-01-20T23:08:00.000+02:00

Every day I log onto read Daria's blog. Called daria-livingwithcancer, every day she writes in the morning. Daria, who lives in Canada, has metastatic breast cancer and has been on a trial. It shrunk her tumours but affected her liver badly. Now her husband, whom she always referred to as D, has identified himself as Don and says she is no longer able to post to her blog. She is in hospital and not really able to talk but knows what is happening around her. Daria has been an inspiration. Read her blog and see what she has written and how people have responded to her. Feeling very emotional about it all.

arm great too

2011-01-20T22:51:00.000+02:00

After yesterday's all clear mammogram and ultrasound, and the doctor so exuberant and ast over-the-top as he exclaimed: "You are cured!" I am again very happy that my arm, at risk for lymphedema, is very good.
Hope it will now stablise so that I don't have to go see The Lymph Lady every week. She is excellent and I really like her and will probably miss her, but it would be wonderful - and cheaper - to see her less frequently. Plus she has just gone up in price from about R392-something to R421-something or other....

Yet when I suggested I don't come next week, she thought I should cos I am flying (locally, a 2 hour flight) on Tuesday. "It's always good to have a good drainage (I think that's the word she used) before a flight".

Think I have spent about R3000 on medical costs since Saturday - GP re suspected German measles on Saturday, plus blood tests for which I did not have to pay upfront, a mammogram and ultrasound for R1110 or something like that, The Lymph Lady for R421.. mmm.. am missing something but cannot think what. Else I am mistaken. It's about R2000. Tired. Still have to wash the dishes. Oh, my arm was so good today cos lost another 0.4kg. Every little bit helps. Then ate Christmas cake tonight....

All fine!

2011-01-19T13:15:00.002+02:00

Had my annual mammogram and ultrasound. You are cured, says doctor, it came quickly, it went quickly, the best kind, and there is no residual even of where it was, he said.
I feel great. But he did say muga scan is unlikely to go up much if it was caused by the A/C chemo. That scan is on monday but no cancer!!!!!!!!

annual mammogram and scan tomorrow

2011-01-18T22:12:00.000+02:00

At 12.30am tomorrow have annual mammogram and scan. Brought it forward from Monday as the idea of doing two scans on one day, and then leaving to go away on holiday the next day, was just too stressful. So having the mammogram and scan tomorrow and the muga on Monday.

Feeling calm.Went to yoga tonight and it was fabulous. Just realised haven't done it for a while as had tickbite fever last year so missed most of December's classes and then choose to spend the evening with someone going back to London last week when classes resumed.

Praying I am ok. Won't be good if I am not but I will plod along and do what needs to be done if it's not. Gonna think good thoughts.

phew!! it's not german measles

2011-01-17T20:02:00.001+02:00

Got blood test results today. But doctor took so long to contact me (I phoned and left a message at about 2pm; he phoned me after 5pm) that I could not decide if it was good news or not. Anyway, it is good news.
I don't have rubella (german measles) and in fact have antibodies against it in my body. Not sure how that happened as cannot remember being immunised against it.
Then my full blood count was fine so my immune system is fine.
However, my IGE or Immunoglobulin is raised: 39.2 where normal is 22 so my bumps are an allergy and I must keep taking the anti-histamine as needed. Oy, just been reading stuff online about link between breast cancer and raised IGE levels but not going to think about that, especially since internet research on medical issues is super risky.
PS: Just went to that great authoritative cancer site, The American Cancer Society and feeling relieved. I have an allergy and that is that. Three years ago, on New Year's Eve in December 28, I also got an inexplicable rash that was so severe I had to have a cortisone injection. Was hyped up now cos that was just before I was diagnosed with cancer... (I found the lump on the morning of Christmas Eve that year), but hell, it is just a co-incidence. Did not get that rash then cos had cancer; The Tango Man said the cancer had been in my body for 6 to 9 months by the time I felt the lump.

Today is two years

2011-01-15T12:30:00.002+02:00

Today is two years since I was diagnosed with breast cancer in the lymph. Two nodes. Four chemos, radiation, 17 treatments of herceptin and now on tamoxifen. And fine..... Got annual Mammogram and ultrasound on wednesday - and so nervous that brought it forward by a few days cos can't bear the tension, keep thinking: if the result is bad, if the cancer is back, I'm doomed cos 90% of my treatment has been preventative - chemo took cancer away 100% - but meanwhile, got other things on my mind. Lol!!! Woke up covered in bumps. Been to doctor, been for blood tests - might have german measles! Hilarious!

PS: Watch this video. First watched it on Daria's livingwithcancer.blogspot.com blog

about having heart

2011-01-10T23:36:00.000+02:00

Julie Goodale is admirable. I don't know her as such, have never met her - for starters we live in different continents although I have missed the US about three times I think, but long before I had cancer and read Julie's blog.
Read fitness for survivors - the day before nerves and see what I mean. It's all about having heart.
Some people are just plain inspiring.

Rather Rattled

2011-01-08T00:11:00.000+02:00

Apart from the fact that I was playing with the layout and colours of this blog last night and have now messed it up big time, which is annoying me no end, I am getting rather peeved with being told I am a hypochondriac.
It's the damn tick bite fever, you see. It is not getting better. Well, it's better but not gone, and have inconsistent sharp, burning pains in spots on my head, on the side just above where the tick bit me behind my ear.
Now I am not imagining this pain. And considering I have been on two sets of antibiotics, twice (had to get more meds when I was in Lesotho as the pain got so bad), surely something is wrong? Surely the antibiotics are strong enough to wipe out whatever infection is there?
I also get so angry when told I am a hypochondriac, that I am over-reacting kind of thing, 'cos when I think back to when I first found the lump, almost two years ago in fact - sjoe, can hardly believe that - well, if I had decided that I had had a mammogram and scan barely two months before and so decided to ignore it, instead of going to see the doctor the same day, well, I hate to think about what would have happened. I would most probably have been riddled with cancer.
So I happen to think it's a good thing that I am so body-aware, and that I act on things, instead of pretending they don't exist.

In lesotho for festive season

2010-12-26T18:36:00.000+02:00

Managed to get 3G for my phone here in lesotho. It is boiling hot here and at night there are mosquitoes and I put on sunblock every day and then Peaceful Sleep anti-mosquito cream every evening, It does make the manual lymph massage more difficult to do at night and I keep meaning to wash the cream off my arm first and then do the massage and then put the cream back on. My arm looks swollen today but I think I have lost the ability to tell. But it is Definately thicker than my right arm. My head - where it was sore from the tick bite fever - is still sore. If it worsens by tomorrow, will go get the pills again. Very hesitant to wear the compression sleeve. Will get hold of a tape measure tomorrow and get someone to measure the left arm vs the right, Then will know if its needed. Otherwise haven't chilled like this in years, Not much to do here,,,, so doing very little.

off to lesotho for about two weeks

2010-12-22T22:53:00.000+02:00

Finished the Christmas edition at work - it hits the streets tomorrow - and off to Lesotho for about two weeks tomorrow.
Not gonna do much there apart from reading and making sure I don't get bitten on The Arm, the one that is high risk for lymphedema and which keeps giving me problems, luckily only temporarily. So am armed with Peaceful Sleep anti-mosquito cream and things which plug into plugs at night (not sure exactly what they are called). And going to take thin long-sleeved tops for being outside at night, as The Lymph Lady said: "Keep your arms covered".
My "new" GP - well, have not decided if going to keep going to him but he certainly is more accessible in terms of getting an appointment than my other one - prescribed an expensive multi-vitamin, Salgar V2000 (expensive here in SA) as well as a slow-acting magnesium tab. Took both today and then nearly platzed when I went to the loo and my urine came out bright yellow. "Oh my god, I think I have hepatitus," I thought, as I made my way back to my desk to google "bright yellow urine causes".
It's the damn multivitamins working their way out my body. Truly is expensive piss, as it is called.
Well, I do look pale - convinced it's the medication I took for the tick-bite fever - and am a little tired (but then have had five hours sleep a night for the last few nights and being working very hard) - so agreed to take it, mainly cos I only need to take two of each per week, and if it doesn't help after a month.... well, will reconsider it in about a month.
So happy festive greetings to you all. Back in January, unless of course I make it to an internet cafe.

phew!! there is a god

2010-12-21T00:19:00.000+02:00

So grateful. Arm is fine and don't need to wear compression sleeve anymore. Totally grateful. Totally relieved. Was so unhappy about wearing it.But The Lymph Lady says I look terrible and declined to do any massage today. So I am now off to the doctor again tomorrow re my tick bite fever. Must admit, I don't feel great. At the moment, however, it's past midnight and I am totally exhausted and have to get up at crack of dawn to take a friend to hospital to have her goitre removed.

my bloody arm

2010-12-19T22:30:00.001+02:00

Just took off my compression sleeve and looked at my arm and it looks swollen. damn damn damn... don't know what to do as find the compression sleeve totally horrendous

seeing the lymph lady tomorrow

2010-12-19T21:44:00.000+02:00

Seeing The Lymph Lady tomorrow and praying that I won't have to wear the sleeve anymore.
Might be wishful thinking but got The Yoga Man to measure my arm above the elbow today - both arms in the same place - and it seemed, although he is obviously not as accurate a measurer as The Lymph Lady, that my left arm was only 5mm, or just under 5mm, more than my right arm.
Oy, I hope so cos I am finding it pretty tough with a compression sleeve especially in this heat. Cooler now so ok but waiting patiently till 10pm to take it up. Well, not being patient at all. Waiting impatiently. The Lymph Lady said most people go to bed way before I do, so I can take it off at 10pm. And I do - wherever I am!!

going crazy

2010-12-18T22:45:00.000+02:00

Cos of the infection from the tick bite fever, have not been able to do the manual lymph drainage and was told to wear the compression sleeve instead. Well, it is driving me crazy.
I am so damn hot. Sitting at work now - almost 11pm on a Saturday night but doing the late shift, a six-weekly occurrence - and I am boiling. Plus it's itchy.
Am wearing a short-sleeved t-shirt with a cotton knit with loose sleeves over it but I cannot bear this heat. Didn't realise that the tamoxifen affects my temperature so much, cos always dress so coolly.
This is a bloody nightmare. Wearing this sleeve has put me in a foul mood and made me uncomfortable all day.
Think it's gonna change my life if I have to wear it fulltime. That is what I am terrified of. It's the middle of summer and what am I going to do, even if I have to wear it for a month or two while my arm settles down. Am frantic. Sleeve feels very tight, especially above the elbow (but maybe that is also cos am working on the computer and driving and ... so bending my elbow a lot, making it hurt), and when I take it off at night, it feels awfully thick.
Started doing lymph massage again this morning. Am so much better and pills end tomorrow anyway.

more about people quitting tamoxifen......

2010-12-16T20:38:00.000+02:00

I enjoy the newsletter I get from
About.com: breast cancer .

The one that arrived today has More about people quitting tamoxifen and the like....

Maybe I am just lucky and haven't had bad side effects, although I think I have had shitty side-effects, but I am so adamant that I do not want the cancer to return so will do what it takes.

The main focus of the article, but not the comments on it, is about co-payments being so expensive. I have to be honest that I am not aware of what I pay for it every month, if anything. Whatever it is, it does not have an impact, unlike my lymph treatment for borderline lymphedema, the cost of which I am super-aware of.

Anyway, these are the comments I posted below the article:

"I am on tamoxifen. Think it’s been nearly 18 months now and I wouldn’t dream of discontinuing it. The truth is that I have no idea if I have a co-payment on it (I live in South Africa and our medical aid, what you call health insurance, is clearly different) but no matter what it cost, would beg, borrow or steal to get it.
Yes I have had side-effects but am tolerating them. I am having 6 monthly checkups – which hurt like hell – to see if I have endometrial cancer (although the oncologist disagreed with the gynaecologist and said only yearly checks were sufficient); went to a dietician and have lost 4kg of the 6kg I gained despite not eating more; and tolerate the hot flushes – a residue of thyroid problems in the past is that my temperature is wonky and I am often freezing or boiling, but I tend to deal with it by wearing cooler clothes than the weather dictates and carrying a soft wrap in my handbag for when I am cold.
I am grateful that there is something that can help in preventing the cancer from returning. I just hope and pray that it works. (I also had radiotherapy as a preventative treatment plus 17 treatments of Herceptin.)"

survived day 1 of the compression sleeve

2010-12-14T23:30:00.000+02:00

Well I wore the sleeve today and wasn't so bad. But now in a hassle about what to wear tomorrow. It's my sister's birthday and she's having a lunch and would like to look nice but on Thursday it's the work party (well, a braai in the office cos the other official party was apparently awful) and I don't have enough long sleeved cotton tops to wear...... have resisted buying more than the few that I do have because do not want to prepare for wearing a compression sleeve. It must always just be temporary.....but what am I going to wear tomorrow?
Meanwhile my head is super sore tonight. Burning.... and The Yoga Man was laughing about how I can barely walk to the kitchen - really??? - and I was talking about going back to gym on Friday.
Well, I am not going to gym on Friday anymore cos the biokineticist thought it was crazy considering all the pills I am on (despite the doctor saying I could gym from Thursday), and so instead of deciding on Thursday as planned, I have cancelled Friday's session too.
But it is kinda worrying that my tick bite fever is still so prevalent - is that correct English? - because the longer I have the infection, the longer I cannot do lymph massage and the longer I will have to wear the compression sleeve. Go away, infection, go away!!! Well, the lymph nodes are a little down.... quite a little down, in fact. Now bugger off, you damn infection, away, damn spot, away... or whatever that quote from the Scottish play is....

back to the compression sleeve - just in time for summer festivities

2010-12-14T00:40:00.000+02:00

Have not done manual lymph drainage massage since last Tuesday when realised that my lymph nodes in my neck were enlarged and had that emergency scan. Then on Thursday was diagnosed with tick bite fever and then today, on a repeat visit to the doctor, with infected tick bites, ie, a secondary infection.
But was nevertheless still horrified when saw The Lymph Lady today and she declined to do the massage but took one look at my arm, measured the affected arm above the elbow and then did the same on the other arm, and the bad arm was one and a half cm more. Bad arm, damn bad arm.
Anyway the shocking part was that I cannot do the lymph massage, but I can wear the compression sleeve. So I start tomorrow. I cannot believe this - just in time for the summer holidays. Don't think it has sunk in yet. So praying that my lymph nodes in my neck go down soon, and the infection clears up. On another antibiotic now, an additional one, that is.

I've got tick bite fever!

2010-12-09T20:01:00.000+02:00

I have found out why I feel so awful and why my lymph glands are so swollen and sore: I have tickbite fever. To be honest, I am relieved although reading up about it now, I realise how dangerous it can be. I have been told I don't have to go to bed so guess I have it mildly but am surprised that the doctor I just saw now didn't tell me not to exercise - asked my biokineticist and she said I cannot - and what it certainly proves is that oncologists, or at least the oncology centre I go to, are brilliant at treating cancer but certainly don't adopt an holistic approach.
They were very quick to tell me they were not one bit worried, great, and I am more than delighted that I don't have cancer but, as the multitude of swollen lymph nodes in my neck was evidence of an infection, I think they should have said that if I start feeling ill, I should see my GP.
Tick bite fever can be bloody serious, for example, and I was prancing around wondering for how long I had to walk around like this.
Anyway, it was The Yoga Man who insisted: don't take your car to the garage today (the front bumper was loose); go to a doctor; your health is more important than your car which did kind of piss me off as I always do prioritise my health more than anything else.
If you don't have cancer, the oncologists don't have time to deal with you. So you need to take action.
But I did listen. Cancelled the garage and then set my alarm for 2pm to see how I felt. I did feel better today than I felt last night. But when a friend at work told me I look terrible (I had also thought my eyes looked funny this morning and I was thinking I should maybe wear some eye-liner), I decided: that's it and phoned the oncology centre.
Joyce, I said to the nurse, I know I am annoying you but I need to ask you two quick things. The left side and the right side of my neck were scanned, but not the back 'cos it was not sore (and remember I had one swelling on one side when I went to the centre on Tuesday where the oncologist then found more lumps and the radiologist even more)....So, I said to Joyce, I now have a large bump on my head which is bloody sore and lots of bumps at the back of my neck. Now is this a problem? Should I be worried that they have not been scanned?
Also, I said, I don't feel good. At all. Should I go see my GP? Yes, she said, maybe you should and then if he is worried at all, he can phone The Tango Man and he will take the call.
So I phoned the doctor who was able to see me straight away. Brilliant. So off I raced and within one minute of being in his rooms, he looked behind my ears and told me I had tick bite fever. Now, I have no idea how I got it. But I am totally relieved that I now know why I have so many swollen lymph glands in my neck area. And I feel good to think that my body is healthy and fighting this infection and that I am not collapsing but am bearing up pretty well.
Of course, now I am worried that a bite on the left side of my body is threatening to my borderline lymphedema, and just to top it all: the bumper of my car came loose, became tangled below my car, I paid a carguard at the centre where I went to the pharmacy to get the medication R10 to take it off (it took one second) and now it's a crumpled heap on the back seat of my car, which means I not only have to have it attached properly to my car, I have to get a new bumper!
But it sure beats having cancer!!
Oh, read more about tick bite fever in south africa

"he is not one bit worried"

2010-12-08T23:49:00.000+02:00

Got a call from the oncology centre today. Not unexpected, considering I had a scan yesterday.
"He (The Tango Man) is not one bit worried," the main nurse Joyce said. "Yes, but the lumps (in my neck) are getting bigger, you can now see one or two just by looking and....." I responded.
"You could just see them yesterday too," she said.
"Anyway, he said I must tell you that he is not one bit worried."
And by implication, she was saying: don't worry either.
He said he knew you would be ok, she said. And then I realised he would not have left the centre before getting the report if he was concerned about my scan.
But I only found out this morning from my biokineticist that the big lump at the back of my head is probably also a swollen lymph gland, and that wasn't examined or scanned.
And my lumps are getting bigger all the time. Could feel them when I put cream on my neck this morning. And the ones on my head and the back of my neck make me feel slightly nauseous at times, at other times they burn. I wonder where the infection is that they are reacting to. I wonder if my haircut/highlights caused it. The Tango Man did say that anything can set this off - and mentioned a haircut. (He could see my hair was different.)
But again today Joyce said he thinks it was caused from The Lymph Lady's lymph drainage massages. I wonder if he knows that I also do it for about an hour a day. Every day, except for Fridays when I only do it for about 30 minutes. Mmm.... gonna phone the centre tomorrow to find out what I can do re this discomfort and burning.Wouldn't want it to last for weeks.

another emergency scan

2010-12-07T23:05:00.000+02:00

My beck has been sore since about Sunday. Cannot remember when it started but by Monday night the muscles were so raised that I phoned the physio to make an appointment. Today my neck was fine and I cancelled tomorrow's appointment.
Not sure if that is related to this but anyway, neck was in spasm on Monday so asked The Yoga Man to massage it. "What's this?" he said, as he rubbed the left side of my neck. "What do you mean 'what's this'?" I responded. What is that? Is it a lump?
It was decided that I would ask The Lymph Lady when I saw her later that day. She said it was either a lymph node or vascular, nothing to worry about and we'd keep a check on it.
But it got worse, more pronounced, as the day went on.
So today, after a meeting at work, I got into my car and drove to the oncology centre. I have given up on phoning them. Not that they don't answer the phone, they do, but they tend to dismiss things. If I am there in person, they are forced to confront me.
I am here for three things, I said to Joyce: to get the blood tests I must have before my next appointment, for you to make a muga scan appointment for, and cos I got a lump on my neck.
She examined my neck, then went to call the doctor. He said there were lots of lymph nodes in my neck. We need to keep a check on this, he said, or something to that effect. I want you to go for a scan, he said.
Oh my God, I said, or something to that effect. Really? Well, you came here cos you felt something was wrong.... anyway, they phoned for an appointment and off I left.
Sitting there for the scan was the one of the few times since I was diagnosed that I felt total despair. I felt that if the cancer has come back, only months after finishing herceptin, it is too soon, too soon, and I would be doomed.
Anyway, the radiographer and radiologist did the scan (first one, then the other). Fine, fine, fine, said the radiographer but "it's so unusual to have all these enlarged lymph nodes" she kept saying, as she found one after the other and on both sides of my neck.
Anyway, happy to report that there is no malignancy. Everything fine according to the report, which I read a few times, although one node is 7.5mm and another on the right 12mm which seems pretty pronounced.
The doctor was not there when I went to take the results so not sure what happens next. The one person who did the scan, cannot remember which one now, said that my doctor, The Tango Man, might want a rescan at some point.
I felt pretty anxious. Almost burst into tears afterwards but ok now. Although it's a stress I find hard to handle.
But why all these enlarged lymph nodes? They're reactive, not malignant, said the radiologist. But why?
The Lymph Lady has now advised no further manual lymph drainage massage for now. "If there is an infection we need to wait," she said in her sms.
The Tango Man had said earlier that her treatment with me might have moved the lymph to my neck but dunno if that's possible.
For now, am totally relieved that there is no malignancy.

i am so lucky

2010-11-29T20:38:00.000+02:00

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.

my scalp is still tender

2010-11-23T10:12:00.000+02:00

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.

here we go round the mulberry bush, the mulberry bush, the mul...

2010-11-22T19:14:00.000+02:00

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.

what you call it

2010-11-20T19:33:00.001+02:00

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.

Didn't drink enough water today

2010-11-18T23:18:00.000+02:00

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.

then and now - just an inkling

2010-11-17T23:42:00.000+02:00

Was trying to download a pic I had taken of some flowers growing from a cactus in a pot, so was going through the pictures on my computer when I came across this one titled 'stubble".
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.

Arm ok

2010-11-08T12:31:00.001+02:00

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.