The Lymphoedema Society of South Africa?

Cut my finger this evening. Stupid. My fault. Have a paper knife used to cut newspaper articles and had brought it home from work to clean it. Stooopid. Was also packing away washing, then gonna change and rush to yoga. Knife cut into my finger. Panicked. On THAT HAND, the hand at risk of lymphedema or, as it is spelt here in South Africa, lymphoedema. A bad week for this - as my arm was up in three places on Monday and going back to see The Lymph Lady again next week.
Went to a local clinic. It is next door to the local pharmacy so decided I was being bloody ridiculous and went there to ask for "the stuff that sticks cuts together".Then pharmacist said I should get stitches as the steri-whatever wouldn't work on my finger tip.
Off I went. Fab doctor. Young. I explained to her that whatever she did, she couldn't give me an injection on that hand. Told her why. Besides the fact that she didn't ask if the blade was rusty/dirty (it was filthy) and should I maybe have got an anti-tetanus injection, she knew about lympedema but seemed ignorant re the causes. Seemed to think the chemo caused me.
Now I was feeling a little embarrassed at my over-reaction to what she said was a superficial cut (but it had been bleeding profusely at home, plus I am dressed in white from top to toe today and was conscious of not getting blood all over me), when I came home I thought: that is it. I am going to start South Africa's lymphedema society. There isn't one.
And I want to educate people.
Let's call her Tolly, from my bookclub, had a lump removed, chemo, radiation. Oh she had the chemo first. Then the surgery. At some point she was going overseas for work, and I told her to see The Lymph Lady so that she could get a compression sleeve for the trip as the long-haul flight could make her arm swell.
She phoned her, arranged to get a sleeve. Then some time afterwards, she made an appointment to see The Lymph Lady. It transpires, so The Lymph Lady told me, that Tolly came for some education, to find out what to do. Her arm was measured and lo and behold, she has lymphedema and now wears a compression sleeve permanently.
She said she had had blood taken from that arm since radiation.....and I know she wore a backpack when travelling and didn't follow all the 'rules' like I do.
Now she is an associate professor, hardly a fool.
The truth is that people in South Africa do not know about the threat of lymphedema or what to do to help prevent it, who to see if God forbid you do have it or are under threat.
I live in fear of developing lymphedema and am soooo vain I now realise. Have said I would kill myself if had to wear a compression sleeve and already apprehensive about possibly going overseas next year and anyway my arm right now is kinda f.... so......
Well, didn't want to make this anxiety a feature in my life, didn't want to think about it any more than I already do, with doing manual lymph drainage massage twice a day, but think I need to create awareness. And as a trained teacher (who no longer teachers) and a former publicist, have the means to turn this into a reality.....

A different kind of lymph massage

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.

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

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

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.

no lymph massage for a week

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

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?

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.

Am I unnaturally calm?

The manual lymph drainage massage I have to do involves touching various parts of my body, from the lymph nodes on my neck to those in the armpit. Yesterday I felt this kind of thickening at the bottom of my left breast, the same side where I had cancer in the adjacent lymph nodes.
Today it was still there.
Now I happened to have an appointment with The Thyroid Doctor, whom I adore, and I told him about it. (I found it kind of amusing and interesting that he asked me how I was dealing with the problem I had had last January. "Oh, the cancer!" I said.) Anyway, he examined me and said it was "something" but nothing serious, or something like that, and that if it was a lump he would have sent me for an immediate biopsy.
Then later this morning I happened to have an appointment with The Lymph Lady (and incidentally, my arm is fine, thank goodness. I told her: if I have to wear a compression sleeve, I might wear it for one week then I am going to wear it one day on, and one day off, which is about the most daring I have ever been re treatment, but luckily did not even have to contemplate that, although she does want to see me next week again.)
Anyway, she felt it and said she didn't think it was anything serious but I should get it checked out.
Now I had tried to phone the oncology centre earlier but had not got through to the treatment room, where the nurses are (who are the first port of call, as one cannot ask to speak to the doctors.) Well, after The Lymph Lady, I just drove to the oncology centre. There Joyce, the most experienced nurse, examined me and said I wasn't imagining anything, there was something and that she could even feel it when I was sitting rather than lying down, which is usually the easier way to feel anything. But there were no doctors there today. I did not ask why.
And so that is a very long-winded way of saying I am seeing The Tango Man tomorrow, have an appointment at 2.15 and despite spending some time reading the American Cancer Association site for some answers as to how one identifies cancer in the breast, I feel calm. I finished the preventative treatment herceptin about two months ago, maybe three, and well, I don't know really. I hope and pray I am ok, but I feel I am ok. And I will say what I always say: whatever happens, I will deal with it.

Lost another kilogram!

Am chuffed to report that I have lost another kilogram. That is 3 down in about a month. Am sure it will help reduce those millimetres of puffiness from my arm. Had to tell now cos am still in bed, having just done manual lymph drainage massage.

Sometimes I think those blog could be titled Fighting Lymphedema! It's not as if there is nothing else in my life though. Going to two art exhibition openings and a symphony concert tonight, out with friends for dinner tomorrow night but first up have to go for thyroid and cholesterol tests this morning, and with no veins thanks to the chemo, hope it won't be too painful. They must just take blood from my feet.

Anyway, no point in getting tense about it now, Gonna have a fab day...

the arm

I know I harp on about it but when u are threatened with lymphedema plus have to do manual lymph drainage massage twice a day, it is hard to forget about it.
Like today, for the second time on a Sunday, jumped up and went about my activities filled with the joy of a wonderful summer's day, when I remembered I had forgotten to do the massage.
The worst though is looking at my arm and seeing that my left arm is slightly puffier than the right arm. All I pray for now is that it stays the same and does not worsen.
But, as The Yoga Man says, my arm always worsens or I feel it worsens when an appointment with The Lymph Lady looms, and I am due to see her tomorrow at 9.30am!
And must say, tired at time - did work for over 15 hours on Friday - but generally happy and think I have become more confident and bolder.

the truth about my swollen arm

Saw The Lymph Lady today. Announced: "My arm is distinctly swollen in three places - in front below the elbow, slighly to the side of the arm and then at the back of the upper arm".
Mmmm... she agreed but the measurements (she measures me with a tape measure to monitor the progression of any swelling) showed a decrease in swelling. Again, it's a difference of millimetres. So what's up with the obvious swelling, what to me looks like heading-for-severe distortion of my arm?
Well, as I said, she agreed it was swollen but said the upper arm muscle had looked like that for ages. The side of the arm she did not comment on (it is minor) and said the swollen part below my elbow is not lymph. "It is something else," she said, showing how it does not 'pit' (stay indented) when one presses it. And here I was living in fear of having to wear a compression sleeve, stop yoga, who knows what.
She also said the severe pain I reported in my fingers was probably joint pain caused from the tamoxifen medication I am on to help prevent the cancer from returning. I see. She said some people are so debilitated from joint pain they can barely move.
And when I said I intended to lose weight as, weighing myself on my own scale again as opposed to the one at biokinetics or the one at the oncology centre,I had gained about 3kg since December, when I first found the lump, she said she had never heard of anyone losing weight on tamoxifen. And thought it was great I hadn't gained any (think I am on month three of it). Ja well, I spent thousands at that crazy dietician who didn't weigh me once and charged a fortune for saying, over about four sessions of an hour each: "Eat mostly plants - salad, veggies - and don't bother about carb veggies - eat them too and you can eat three fruit a day."
And The Lymph Lady - who has just returned from a lymphedema conference in Australia - the 22nd international congress of lymphology - last week - laughed at the idea that I can now do more cardio at the gym because since I now have less medical appointments every week, I have time on days when I have no appointments, to walk briskly down the road to the mall and back. And that has upped my daily cardio level and made a huge difference to my ability to work harder at gym. "There is something to be said for seeing doctors less and walking more," she said.
A friend said I should tape her. So that next time I get hysterical about my arm, I can play the tape.
Meanwhile it is now 11.15pm and I still have to do my manual lymph drainage massage.... but I am smiling and relaxed within!