Tuesday, May 31, 2011

Yahoo to yoga!

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......

Thursday, May 26, 2011

Readers in Slovenia

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.......

Monday, May 23, 2011

being a big gal - lol!

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....

Sunday, May 22, 2011

what difference will four days make

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.

Wednesday, May 18, 2011

surprised at my own reaction

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.


Monday, May 16, 2011

almost 11.30pm

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

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!

Thursday, May 5, 2011

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.


Saskia RJ Thiadens, RN
Executive Director, NLN

Wednesday, May 4, 2011

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

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

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....