mammograms and lympedema

(By the way, here in South Africa we spell it lymphoedema; in the US it is spelt lymphedema and I am spelling it like that in this posting so that it is picked up in internet searches.)

I was worried. Being high risk for lymphedema following my radiation for breast cancer (today at my appointment with the expert my arm was slightly up in two places above the elbow, but neither measurement more than it had been at some point in the past), I have been told for eg not to wear underwire bras and not to have my blood pressure taken on the affected arm etc.
So how was I going to have a mammogram, which I am scheduled to have in about two weeks' time?
It's fine, The Lymph Lady assured me. It is mainly the arm I need to concern myself about, although a major injury to my chest/breast/neck area could affect my arm. Unless one had lymphedema in the breast.
So a mammogram will be fine. Nothing to worry about. Mmmm.. wonder why no underwire bras though. Must ask.
And we chatted about sun block, cos I am concerned that I have gone to so much trouble to find non alkaline soaps and creams for the affected area - so that bacterial infections cannot thrive in the lymph-affected area, so how can I then slap on alkaline sunblock? Yet I have been told by both the radiation gals and The Lymph Lady to use sunblock.
She told me that it was not necessary to use sunblock on my arm unless I was going to be outside. That is, not for general in and out going about my business. (SA is hot and I use sunblock on my face and neck every single day, summer and winter.) But it sounds like I need to use it on my neck and upper chest area, the part that is still so damn itchy following radiation, as if it gets sunburnt, it will stay red forever. The pigment will change.

after radiation

It's about two months, maybe three?, since I completed my five weeks of radiation for breast cancer.
At the time, it had barely any impact. Not even on my skin initially. "It's your healthiness (sic)," said the radiation oncologist, a non-existence word (I think) which I now love to quote.
Well, two months or whatever it is down the line, the burn marks that did appear below my neck have disappeared but it's still damn itchy there. And even as I sit and write this, on a Friday evening, I have thick white E45 cream on the area (ok, at home, so no-one can see). I did use a cortisone-acqueous cream mix but apparently it thins the skin so doctor would not prescribe any more.
And worse than that, am in pain. Not all the time, but often and it's fairly extreme. Well, it's sore. Under my arm, above my boob, below my upper arm.... and so on.
None at the moment so it's difficult to remember where exactly.
Anyway have decided the only thing to do is to exercise twice a day, 10 minutes a time. I had to beg the radiation practice for those exercises (they are supposed to be post-operative exercises and I did not have any surgery) but need to do them if don't want to have restricted movement. Or so I say, and so do some websites.
The trouble has been that the radiation also caused swelling - funny that I did not mention that earlier in this posting cos it's damn serious - but luckily that is now under control although I am doing lymph drainage massage twice a day, for about 30 minutes a time, plus seeing an expert for it once a week, and it's do time consuming that have not had time to do arm and shoulder exercises, or write much on this blog.
But not complaining. Hell, the massage has become part of my life. Hopefully not forever though. And, as I said earlier, have to now add 10 to it in the morning and night and surely that cannot be too difficult. Ten minutes is after all only 10 minutes, even if it does mean i now have to wake up at 6.20am and not 6.30am on the days I have biokinetics.

beware the stiffening fingers

At first thought I was imagining it. So cancelled the message I had left for the doctor. Then phoned again a day or two later. It's true. My fingers are swelling during the night and at about 5am/6am, my rings are so tight. Then they gradually loosen.
Now going to see a lymph drainage expert on Monday. Been reading on the internet and although the specialist physio (let's call her J) said on the phone it sounds like after she has done one session, I might be able to massage it on my own, and maybe it's just a temporary reaction and good to catch it early and nip it in the bud... blah-blah (I finished radiation only on Monday), I am terrified as it sounds like I have lymphedema.
Also, went shopping today - for clothes - and realised in the dressing room mirror how burnt my skin is. Both on the area below my collarbone in a large section and also below the armpit above where the bra goes. It's deteriorated a lot since Monday.
So so much for not having major side effects. Well, that's one side of it. The other is: have miminal side effects except my fingers feel stiff (was saying earlier, thank goodness I am not a concert pianist) and also, have acted quickly on the swelling. It is so slight it cannot be seen and am seeing specialist person on Monday (only got message on Friday from doctor that I should phone J). so no need to panic yet. I refuse to have lymphedema (if only it were that easy but damnit, I should have been properly briefed re what to do and what to feel.)
more re lymphedema

"you are being watched"

Found out today that while the "whatevers/radiologists?" leave the room during my radiation, they are watching it - and me - on a monitor. Makes sense - as they have to check it is targeting the right area.
Then, when they come tippy-toeing in to reposition me for the next bout, they dim the lights so that the beams are clearer.
Maybe tomorrow will pluck up the courage to ask what their job titles are. Easier to ask the doctor next week I guess, and less obtrusive.
The radiation is almost a non-experience for now. Walk in, take your top off, lie down and they make marks with some kind of pen where there is already four tiny tattoo - yea, permanent tattoos - and then position me. That can take a few minutes. Then they leave, a buzzing starts and then don't know too much more as I generally keep my eyes shut. Then they run in out about three times, the machine moves around me. Then it's over and I leave and go to the office. 8.4am tomorrow so need to go to sleep soonish. Trouble is: not tired.

desperately seeking tranquility

had planned this whole piece about how i want one, no, not one, about three tranquil days - maybe even a week - at the risk of getting bored, ending up saying how the truth is probably finding the tranquility within myself.
But now too damn tired to elucidate all that, and all cos i worked quite latish to make up for coming in late cos of radiation. Plus saw the doctor and no, nothing wrong with my chest - was breathing shallowly cos i am panicking is the only possibility. Did cough quite frantically just now again.
Good news is that can go back to gym. Let's rephrase that: must go back to gym but cannot get too sweaty or out of breath. So going to get biokineticist at the gym (my former brilliant biokineticist Dalena is off to live in Namibia). Booked an assessment for Tuesday. Said I want a brilliant highly-experienced bio. Scared if do it on my own will under-perform rather than over-perform, cos have this desperate need to protect myself. Everything makes me anxious. Even the thought of exerise as The Tango Man was adamant about no gym but no the chemo is over and it's radiation time. Actually very excited about going back to gym. Going to be quite emotional but happy emotional. The first time I drove passed the gym, after I had been banned from going, I felt quite tearful. Even now, can barely bring myself to look at the building cos was so happy going there. Now going to be happy going there again. Gonna be kinda awkward though: gymming in a hat, like the frummes (religious Jews).

what a day

Was apprehensive about today cos it was my first radiotherapy treatment but it was eclipsed by a call from my sister saying she was booking my dad into hospital. Thank God he is ok - just bronchitus - but my goodness, he had had an ECG and had fallen this morning as he was so dizzy.
He is going to be in hospital for about two days but luckily he is ok. My sister says he is in the bed right next to the one where my mom died just two months ago.
Apparently my dad is kinda enjoying himself, craking jokes and interacting with all. When I spoke to him this afternoon he sounded well, and his spirits were certainly high but that was before he saw the doctor so I was still anxious. Now he is fine. The doctor said he doesn't look his age - a remarkable 87 - and is very strong. What an amazing man.
Anyway radiation was ok. They said I need to wear cotton sports bras so glad I had already bought five and gonna buy about two more but said i don't need to wear loose cotton tops all the time (had bought five of those as well). That's fine cos did not plan on wearing on to the book awards launch party anyway....
Chest feels sore but then i often have pain there.
Bumped into Erica, the head oncology nurse, at the centre and she said radiation has an accumulative effect, unlike chemo, and you get bone tired.
Have also changed the times of my appointments so will only be going at 4pm again towards the end of the treatments.
And the actual treatment? Hard to tell as they also gave me x-rays to check the positioning of the beams and just when I tried to close my eyes and practise some visualisation, they would come running in (two of them) and I would hear these heels coming in and out. Apparently they have to check the positioning and I have five different beams/places where the radiation is going. Will ask more when I see the doctor again which is next week apparently.
But the actual radiation is quick. They (the two "whatevers" in the heels) said they don't work in time, they work in dose, and that i will get the same dose every time but as the electricity current might be different, might not be the same duration each time but it's about five minutes (think that's what they said).
Anyway, next dose is tomorrow at 9.15pm. Do have a funny feeling, sorry, taste, in my mouth but not sure what that is from.
Oh and major relief that handed interview in.