What a silly gal!

Saw The Lymph Lady today and my arm is ok. In fact, pretty much better than last week. So this just shows how neurotic I am.
I have made the state of my arm the benchmark for how I feel about things....
She did, however, measure both arms, and my upper left arm is up about 8mm (so almost 1 cm) compared to my right arm, and bizarrely enough there is almost 1/2cm (4mm to be precise) difference between my two wrists. The other differences were minute but still there....although one of the measurements on my left arm might have been less than my right arm, which is how it should be, as it is my less dominant arm.
So it's not ideal but I don't need to wear a compression sleeve for which I am eternally and overwhelmingly grateful. A happy chappy.

PS: Also saw dietician. Ironically weighed the same as I had when last saw her in July but had lost and gained in the interim. Naughtily bought 90g Christmas cake miniatures but keeping them in the spare room for Christmas time.....Confident weight will go down. Boiling boiling hot here in Joburg at the moment. Over 30 degrees I reckon.

My not-so-great news

Ever since my gynae called me on Thursday night, I have been toying with what to call this post. Been delaying writing it in fact.
Look, I am still alive. But shocked. Upset. Not charmed. Learning to be strong again.
On Monday I had a Z-sampler or endometrial biopsy because I am on tamoxifen and it can cause endometrial cancer. So every six months I subject myself to this excruciatingly sore test. Wrote about it in my last posting. I was very upset after it all on Monday as it was sore and cost so much and I bled so much afterwards and I just had a feel-sorry-for-myself few hours (which I think is pretty unusual for me).
Then I got on with things. Was a little shaken, but fine.
Phoned on Wednesday for the results. Not there yet. Was told that could happen. Phoned on Thursday again - then the receptionists leave a message for the gynaecologist and he phones back later. Forgot about it until I got a call late on Thursday.
"Irregular cells," he said. "I need to do a D&C".... me, the great professional question-asker (journalist) went dumb, numb, whatever. "What is the worst case scenario?" I asked. "Hysterectomy," he said. "Will I need chemo again?" "No," said he but not sure I believe him.
He sort of arranged a date for the D&C, he told me to be there at 6am, could leave at 1pm/lunchtime and I must speak to his receptionist for codes (for the medical aid authorisation). I said I wasn't at my desk, was walking and was five minutes from the office but he said they were closing up for the day (was almost 5.30pm) and I must phone the next day after 9am.
When I did, the receptionist said she was rushing to theatre with something (his rooms are in a large private clinic - "private" versus "state" being essential for top healthcare here in South Africa). I waited for her to call me back - was having an insane day at work - and when I phoned after 1pm, his rooms were closed for the day.
So I don't really know what is going on. Oh, he did say it was pre-cancerous. But doing a little reading, and I need to know how bad it is. I am freaked out. I did ask: "If I refuse to have a hysterectomy...?" and he responded with "then you will live with a pre-cancerous spot".
Tomorrow I will get a copy of the test results (even if I have to drive to his rooms and demand them from that silly receptionist whom I have had a tiff with in the past), see that my oncologist has a copy of it (when I phoned on Friday they said he was about to go on leave till October but did have a locum - and he has a partner I have seen once before - but they needed to see the report before they could schedule an appointment); and make an appointment to see the gynae so I can arrive with notebook and pen in journalist mode and ask him millions of questions.
When I went on tamoxifen, I was told, "don't worry, endometrial cancer is slow-growing and we can cut it out...." - ja, with half my insides too?
I feel devastated. I cannot believe that my arm hassles (borderline lymphedema and doing 1hr of lymph massage a day, split into about 45 minutes in the morning and 10 or so min at night) and now this, on my way to endometrial cancer and more than likely having an operation that is going to bring my life to a temporary stop (you cannot drive for about 2 months and won't be able to exercise and....)is all from the preventative treatment for the cancer I had. I remember my brother-in-law saying when I was diagnosed: "You're fine now but when they start the treatment...". I cannot believe that the slim chance of the tamoxifen effect has happened to me. Don't know why I thought I was immune but...
Ironically, saw my thyroid doctor on Friday and when I said: "So, I am quite healthy then?" he said: "You are VERY HEALTHY - from the belly button up!" One has to laugh........

Deranged day

Oh dear. Just saw my last post was entitled traumatic day or something like that. Suffice to say, between the two postings have been ok. Today was plain kak.
Well, not all of it. Somehow January/February and September are my big test months and it is now clear to me that I don't cope with trauma, tension and pain of tests.
Today was the painful one.
Had three medical appointments today. Started off seeing The Lymph Lady and my arm was ok-ish - up 0.5cm in two places if I remember correctly. She said as long as it doesn't creep up continually, I am fine. Haven't had to wear the compression sleeve for about a year, since I last went overseas and did a long-haul flight, so generally it's been much better.
Then went straight to the opthamologist (across the road in fact but such a busy one, that I spent five minutes driving there instead!). 
Have a stigmatism in one eye, and had HUGE problems when I had thyroid problems as had thryoid eye disease too and ended up having an op to remove excess skin but even today my own eye protrudes and I don't look anything like I used to look, but got over that long ago.
Anyway, I wear glasses for driving at night and increasingly for movies, theatre, all shows... after much much deliberation today with different lenses, it was decided to keep my glasses as they are. And don't need for reading.
All well and good.
Then had to go for Z-sampler test. This, along with an MRI scan, is my worst. It is a scraping of the endometrial lining to check for endometrial cancer, which the Tamoxifen anti-breast cancer pills can cause. For some people it is excruciating. I am one of them. Now I use a Voltaren suppository beforehand but when phoned today to check how long before the appointment was told 30 minutes. I took it 45 minutes in advance but when I asked the gyncaecologist today when is the right time to take it, he said 90 minutes to two hours....
It was so sore that I think I kinda pulled his hand as I told him to stop it. Was less sore afterwards - that was the Voltaren working, he said - but bled so much - this is expected and they give you a panty-liner - that had to get a pad. Haven't checked since to see if I am ok.
Look, I am grateful - said between clenched teeth - to have access to top medical care and to be able to have such a test regularly. But it did cost me R1700 which is a f..fortune and the medical aid hasn't been paying for it (had discussion with doctor's receptionists this time and gonna fight it big time when it happens again now) but I felt so sorry for myself afterwards to have to endure such agony and spend so much money that I have been eating non-stop ever since (a few hours now) and spent just a little more than that on two pairs of exorbitant but fab shoes.
Deranged.
I know I will be fine tomorrow but sometimes it is all a little bit too much to bear.

Not sure why I haven't been writing....

Not really sure why I haven't been writing but take it as a good sign. Yes, my arm is unstable - The Lymph Lady says not badly so - but it recently went brilliant than up again a little. But nothing too serious. My weight is pretty good. I now weigh just a teeny little bit less than I weighed when I was diagnosed with cancer just over three years ago and, considering am on tamoxifen, am delighted re this. But it has cost a fortune in seeing a brilliant dietician whom The Lymph Lady recommended. Then the major task I had attempted - and which I cannot discuss until I have achieved it (not that I don't want to - Ooooo, I could go on about it for hours but it could cause problems if I did discuss it), well, that is not going too well - understatement of the year. It is taking far longer to make that change than I ever anticipated but otherwise I am well.
I think the fact that The Tango Man has scheduled my check-ups to once every six months, rather than the three-monthly and then four-monthly visits I have had to make, is part of the reason. Canecr is not my primary focus, thank God, and although my twice daily lymph massage takes up nearly an hour of my day, and the only reason I have to do it is because of the impact of the radiation on my lymph glands, and it is damn timeconsuming and means I can never bounce out of bed on waking-up, I still don't think about it all the time. It's the lymph I think about, not the cancer, if that makes sense.
Oh cos I wasn't able to do much exercise cos of my toe - and I must admit was super-slack in doing anything at home -Now I have them but not sure yet what I feel about them, other than doing something like sit-ups for only three repeats, and having to go from clothes on, to clothes off, neither makes me feel confident of its ability to move the lymph, nor does it make it a comfortable routine. (I am doing it on occasion instead of the manual lymph drainage). But we shall see.....

Two and half years since radiation

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!

In a silly quandary

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

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.

yoga vs lymph massage

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

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........

Has it taken over my life?

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...

Chatting to The Lymph Lady

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

Eating and sleeping - or not

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.

this blog helps me

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.

diabetes test at crack of dawn

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

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!

going crazy

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......

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.)"

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

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!

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

still relieved

Am still relieved that I am ok after this week's tests, the post-herceptin tests. Had a chest x-ray, an abdominal and pelvic scan, a muga scan and a myriad of blood tests. My muga is down. To 60 when it was in the 70s pre-treatment so the treatment has affected my heart but as it is still within normal range, I am fine. Another example of why being healthy and relatively fit is important. As bizarre as it sounds, if you are healthy and get cancer (yes, it can happen, I am proof), then the treatment is easier.
The Yoga Man berated me for my facebook posting. I wrote that I had breezed through treatment and was now 100%. He said neither are true. But really, in retrospect it does feel like I breezed through treatment and only having four chemo sessions was nothing. Well, a little. And compared to having cancer, I am now 100%. Yes, it is a reprieve for three months when I see the oncologist again (and have to have blood tests but no more scans till January). But I feel so much more relaxed inside me.
And yes, have some side-effects from the tamoxifen I am on, and yes, it's all fine when I am not experiencing them (like at this second). but really, can cope.
Less sure about my arm. Yes, will admit that the thought of lymphedema throws me into despair. Will actually go so far as to say was depressed about it last week. And I am not a depressed person. Funny that. Always thought I was a misery till I got cancer. My mom used to say to me - smile, and see if your face cracks - but really, I might not smile a lot but even if I am miserable, and even when I wake up I sometimes feel like I don't want to get up, once I am up I am as bouncy and cheerful and energetic - to the point of driving people around me quite crazy.
Last week was an exception. Was depressed about my arm. couldn't sleep, had terrible thoughts and was pretty uptight right through my birthday weekend in Durban. I feel as if lymphedema is a disability and I don't want to wear a compression sleeve. Don't mind sometimes; but not permanently. Unfortunately, if I develop lymphedema - am borderline now - I won't have a choice.
The Yoga Man commented how it's bizarre that my looks and image are important to me, yet I keep getting illnesses that affect my looks. First got thyroid with thyroid eye disease and my eyes bulged and were puffy, so bad that I often wore dark glasses and once it settled down, had an op to have the excess skin removed. Eye still bulges now but no longer hassled about it. Yeah, I don't look the same but it's ok.(Oh, and hardly incidental, but both the thyroid and the cancer treatment have made me gain weight.)
Now I have an arm problem. The irony this week was that now my 'affected' arm is thinner than my other arm, but that was from wearing the sleeve and from having that special tape on.
Have not been able to do lymph massage all week, but have worn the sleeve for more than a week now and guess what? Have survived. But part of why it's ok is that I am pretty sure that when I see The Lymph Lady again on Wednesday, she will tell me I can take it off. Hope so. She spoke about wearing it one day on, then one day off until I determine how my arm is.
Let's see.
As my blocked nose does not appear to be getting better - not serious, only an issue cos of the lymph and my arm - she has now said (sms-ed her yesterday) that I must do two days of half-the-time lymph massage, then see how I am. Going to wear the sleeve till I see her this week. Luckily it is not too hot here in Joburg - actually surprisingly cold - so wearing long sleeves is not so bad for now. Took out all my longsleeved cotton t-shirts (I never wear tailored shirts although I do have one in my cupboard), and just wearing those. So far ok.
Sjoe - but that was a long stream of consciousness. Still want to write about what The Tango Man said about exercise, but will leave that for another day.