Wednesday, April 28, 2010

my arm is swollen

I don't wear tailored clothes. No shirts, no jackets, only t-shirts (often with lycra) and jerseys (jumpers). Today, however, I am wearing a long-sleeved t-shirt made of organic cotton. No stretch in it. It is quite a loose top. But there is no doubt, I realised in the course of the day, that it is slightly looser over the right arm and feels like it's pulling a little on the left arm, the side which is at high risk for lymphedema since I had radiation for breast cancer. So, although I thought my arm was fine - albeit sore quite a bit - it clearly is not ok. Well, not 100%. Seeing The Lymph Lady next week but she just phoned to change the appointment so it will be after my next herceptin treatment as opposed to before. And herceptin is not very good for swelling either. Oh well, just wanted to note this.
Met a girl at a launch tonight, young, say in her 30s at the most, and it turned out (from the person she was with, who knows me, asking me most pointedly how I was) and then this girl and I both discovering we had thyroid (although she takes 3X the dose of eltroxin I take) and what-what, that she had cancer three years ago. Lymphoma. Says she is fine now and sees the doctor once a year. Said she had chemo and radiation. Now my friend says... "Humph! She says she is fine? Ask her boyfriend. Bet she is not ok. Bet she has niggly side-effects that change her whole life." Ja, side effects. One gets used to them but they are there. Like I live with the threat of lymphedema all day and every day. And although I am a little tired now and would love to get into bed and just read, and then sleep, still have to do my manual lymph massage, my second of the day. But I am fine. It's just different.

Tuesday, April 27, 2010

Feels like years since I have written...

Sjoe! Feels like years since I have written but it's only two weeks. Been busy. Went away after my last post - a week's holiday in Cape Town - then came back and worked like an absolute dog, writing travel stories and working super hard cos my boss was away. But cannot complain as he did my work while I was away for three weeks recently (two weeks in Monaco and French Riviera to do a travel piece for work, then Cape Town for holiday...). Anyway, started to realise that work can be like a drug. On Saturday, before 8am, I had already sms-ed two contributors, changing things for this week. Then had to force myself to relax. Luckily, that wasn't too hard! Lol!!
Then went away this weekend. Well, only for one night to Valley Lodge in Magaliesburg, where the Portuguese team is staying for the World Cup 2010 - although not without controversy read article. Was fabulous. Then ate at Forum Homini today, which was supposed to be sensational but wasn't the best. They have this ridiculous 6 course tasting menu and hell, my friend said after a while: "This is getting tedious" and we were happy when it came to an end and we could leave. Two courses were really nice - mushroom soup and the springbok (each portion is really tiny) but the rest... and it was annoying that,as it's a set menu, you need to state beforehand what you eat and don't eat. I did so on the phone and said my friend does not eat meat, but eats fish although no shellfish. When I arrived today, saw the eating preferences next to my booking. But that's where it stopped. They kept asking my friend: "So you don't eat chicken?" and "Calamari?" to which we said no but they still brought a salmon dish with calamari. They seemed totally unprepared for these preferences and I found the fact they were flummoxed slightly annoying. Well, pretty annoying: why pretend you can cater for different preferences when you cannot? And my best moment was when one of the restaurant managers seemed surprised when we said foie gras was meat. "It's not meat!" he said. "It's liver!" I said. "But we just use the oil," he said, as if that was therefore irrelevant. Phuleeeze!!
Anyway, the meal with tip cost about the price of a bottle of perfume but knew about that beforehand, wanted to go and not sorry I experienced that.
So guess if I am writing about all this, then it means I am ok.
Yes I am I guess. Have vacillating bad taste in my mouth but it seems to be getting better. That is from the herceptin. Still often concerned re my arm (am at high risk for lymphedema following radiation for breast cancer)which hurts a little but does not seem swollen, except for maybe at the elbow a little, and not so happy re my weight which is a little up (thanks to the tamoxifen too....).
But otherwise very well. Feel energetic - want to move and do things and find sitting at my desk at work pretty confining after walking so much when I was overseas.

Monday, April 12, 2010

Relieved to report that all is well

Had an appointment with The Tango Man. Standard three month one. Couldn't help feeling a little anxious before but all is well. Afterwards remembered a few more things I could have asked him but really, all that matters is that I don't have cancer.
What he did say though is:
* the bad taste I had from herceptin is possible, as it is chemical;
* that i must watch it if have muscle pain again, but didn't sound overly concerned;
* that my badly splitting nails, now so short they hurt, could at a guess - and he hates gambling, he said - be from the herceptin (I asked whether it was the herceptin or the tamoxifen). He said that they are working on an oral drug which is the same as herceptin and they have reported it causes problems, cannot remember the exact description now, on the sides of the nails. But the drug is still in the trial phase.;
* that it is good I was able to do more cardio when required - ie when I was overseas now and walked a fortune;
* said I would be able to do more exercise once I finished herceptin and that might also help me lose weight; and, he said that
* the reason two of my pairs of winter shoes are tight is because I weigh more. From my thinnest during chemo - but I had throat thrush and could not eat solids apart from soft boiled eggs for days!! - I am now 6/7 kilos heavier. Tamoxifen, I say. I think I weighed a little less during chemo than he says but it was interesting how I never got thin, even when I could not eat solids. Since tamoxifen, have gained 3-4 kilos, it varies. Got weighed at him straight after a sushi lunch with 500ml water, but wasn't prepared to sit there hungry while having herceptin.
Oh, the one nurse said that every day they discuss the patients they will see that day and I mustn't worry, my prognosis is fine and I will be fine. Then was, well, am, very sad to hear that the head nurse has resigned and is leaving at the end of this month. Gather, from someone else, that she had a fight with The Tango Man who is know to be pretty impossible but is becoming friendlier each time I see him.
Another nurse resigned the same day - so something must have happened - but was talked into staying on.
The not so great news is that my arm, which has been giving me slight swelling problems since I completed radiation, was up everywhere today, by anything from 2cm to 5cm. Have to see what happens next week. The Lymph Lady says it's not from the travelling; the head nurse at the oncology centre said that sometimes lymph problems take a month to settle down after a flight.
Off to Cape Town on holiday for a few days. I know I have just been away but that was a work trip - this one is leave. The entire company was forced to take all leave owing by the end of March. This week has been deferred from March to April cos of trip to Monaco and south of France.
Oh, the other bit of good news is that I miscalculated: finish herceptin early in July, not at the end of July. Today was herceptin number 13.

Thursday, April 8, 2010

the latest on my arm

Spoke to The Lymph Lady today - well, by text on the cellphone - and she advised me to sit tight with my arm. I told her it had been swelling and today is a week since my return from overseas, with its 10-hour flight from Paris to Joburg. My arm had been fine on the day of my return, when I had seen her, swollen in the middle of the upper arm when I saw her again on Tuesday, and been feeling awful ever since: slightly sore and definately swollen although it was been worse.

She told me not to wear a compression sleeve and that it could take a few days for it to settle down (post the flight).

Wednesday, April 7, 2010

Back from my travels

These are some fascinating comments by New York fitness trainer, certified cancer exercise specialist and musician Julie Goodale whose blog fitness for survivors I devour regularly: julie on lymphedema.
I am back from my trip, had a wonderful time and survived doing the flights with a compression sleeve. I even put the sleeve on in the actual plane, before it took off, on the way back in full view of everyone (my sister is right, everybody is too self-absorbed to even notice the kind of things people become traumatised about) and wore it throughout my two days in that glamorous and fashionable city of Monte Carlo. Look, it helped that I knew it was not permanent but my arm felt shitty and I thought, rather wear it and let people think you're wearing a bandage - oh my lunch and dinner guests definately noticed it but said nothing - than suffer permanently later.
Saw The Lymph Lady on the day of my return who said my arm was perfect, better than it had been for ages. Then saw her yesterday and it was badly swollen in the middle of my upper arm. Now, and tomorrow is a week since my return from flying long distance, it is still slightly swollen and slightly sore and I am in two minds about sms-ing her and asking her what I should do.......Might wear the sleeve tomorrow. But it's gonna hurt cos found out - and she told me too when I complained - that if you bend your elbow it hurts like hell and I am going to be banging away on the computer keyboard all day tomorrow... mmm... will think about it.
Anyway, fab trip. Now need to sit down and write about it for the travel mag.