la la la la la la la la lymph

Saw The Lymph Lady today. Says my arm is better than last week. Also measured my unaffected arm to compare it with the affected one. Well, above the elbow my left arm is 1cm more than the same area on the right arm. That is a big difference. Funnily enough, there were some parts where my right arm was more than my left - cos it's the dominant arm, she said.
Not charmed that a 1 cm difference is regarded as doing brilliantly. Doing so brilliantly in fact that I now need see her only every second week, as opposed to every week.
I suppose I should be grateful I don't have lymphoedema and that the swelling is relatively minor.

doing the litmus test

Played scientist yesterday. Sat with my PH testing kit, bought at a (swimming) pool shop as instructed, and before me an array of all the products which I use/used to use/intend to use on the wide area which was radiated - from below my chin all the way over my upper body and down my arm to the tips of my fingers. The aim? To test their PH value. Why? Cos The Lymph Lady said I had to use acidic products. Neutral is ok but acidic is best and alkaline a no-no.
So I dipped the strips into Lancome moisturiser, Lancome cleanser, Lancome toner, Clarins hand cream, Dischem acqueous cream, Lancome sunblock (or did I forget that one?) and Johnson's baby soap with aloe vera.
Hoo boy. I was perplexed. Cos this PH testing kit did not have numbers, only colours. So was that bright orange or light orange? And bright or dull green? (The kit showed both PH as well as alkalinity.)
Well I can mostly remember that the acqueous cream seemed the most neutral and the soap the most off-the-target - the PH value went bright yellow and the alkilinity a shocking pink (or was it the other way around?).
Either way, think I am going to have get a calibrated PH kit so I can clearly see the values of each product. Oh I had a pen and paper at hand and dutifully recorded it but colours, rather than numbers, made it difficult. Especially comparitive rates as I tried to determine: which orange was brighter?
Anyway, this is all an attempt to prevent lympdoedema. And pleased to report my arm seems to be ok, except still doing manual lymph drainage which is now taking about 40 minutes a time. And doing it twice a day.

i know people mean well but.....

I get damn annoyed, inside me, when people say: "Oh, you are sooooo brave". I know they mean well but actually, what do they mean? I try to look stony faced but probably just glare and mumble something about being fine. But really,what do they mean? Where have I been brave? Am i brave by being at the same dinner party with them, by not being home and sulking? Dunno what they mean.
All I have done is been on this journey because I have no choice.
And the truth is that the situation I am in now is one of the worst I have been in. My fingers are no longer stiff and sore; but my upper arm above the elbow towards the back is distinctly swollen. On Tuesday I see the lymph expert again but this is what radiation has done to me. I can pray it's just temporary; else it's lymphoedema and a chronic problem that won't go away. And I thought, from the reading I had done, that it mainly happened to those who had surgery with lymph node removal and then radiation. I had no surgery, kinda plain-sailed through chemo and radiation and now have this. Started when radiation finished. Well between the second last and last treatment.
Horrifying.
Was also horrified today to hear of someone who was on this hormone treatment, which i think i have to go on too but not sure, and felt so nauseous that half way through they gave up. Ok the person concerned is 83 and i am not but still, doesn't sound too good, does it? Oh well on Monday see two oncologists, the main one plus the radiation one so will find out more then.
But damn lymphoedema and damn swelling. Go away; i don't want you.

lymph circles

Did my lymph massage tonight and it calmed me down. Twenty circles with my hands in the crook of my right neck - I did 30 - then 20 - again I did 30 - circles under my right armpit, then in my left groin area (beside the hip bones) and then long sweeps from my left elbow along the back of the (affected)arm to the back of the shoulder. All done super slowly and super gently (apparently the lymph is just below the surface), with each circle at the pace of the count 10001 (one thousand and one).
The effect is one of instilling calmness.
Needed that cos spent much of the day in a state of panic. My arm felt heavy, my fingers were still tight/stiff and I found myself researching "breast cancer radiation lymphoedema" during work.
Then I phoned the Lymph Lady in a panic, thinking if i annoy her and she hates me, who cares. I asked her if there was anything else I could do to ensure I did not get lymphoedema, and did I need to do the arm exercises and if so, if i did them two, even three times a day, would it help?
I left a message and surprisingly she phoned back. No, there was nothing else I could do beyond being careful not to overdo it ( referring to carrying heavy things, not to squeeze a stress ball as some people would recommend. She asked about yoga. She said as I was so anxious, I should go get a compression bandage/whatever and I interrupted and said "no ways", I would wait until Tuesday when I see her. Quite honestly, going to buy a compression sleeve/bandage (think they are two different things and think it was the sleeve she recommended) would be like saying: I have lymphoedema. I said: "I don't want to get it (lymphoedema)" and she said "I know" but added there was nothing else I could do. Think she said there was nothing I could do; so if i get it, I get it or if I have it, I have it (my extrapolation).
My therapist said I should do visualisation. I am not sure it helps.....

my swollen arm

Just been to see the lymph lady. Found out - from the reminder SMS i received just after 7am this morning - that she is an occupational therapist, rather than the phyiotherapist I presumed she was. But super qualified and liked the fact that when i filled in th obligatory form at the practice, it included a pamphlet about who is she and what she does and where she has studied etc. Very helpful - and reassuring.
Anyway, here's the situation (and for once I did not take notes): my left arm is swollen. In one place it is 1/2cm more than the right arm. Thought my t-shirt felt a little tight yesterday but thought I was imagining it. It could be caused my the infection I have cos my chest area is badly burnt. (I phoned the radiotherapists today to check if it was usual to have such a rapid deterioration - a week ago when I went for my last treatment it was light pink - and they said, yes, cos now have full dose of radiation in me and the effect is accumulative. Was told not to worry if it peels but that my week three it should start getting better. Great.)
Anyway, am seeing the lymph lady again next week, on Tuesday, and will know then or the week thereafter if it's lymphoedema. Until then, have been given massaging exercises to do at home, twice a day, and no arm cycle or anything with weights in the gym.
Forgot to ask re yoga so think I had better not go.
Oh and was given reading and quite frankly, if i do have lymphoedema it is far far worse than just a swollen arm which does not go down. Prone to infection and anything can set it off, and so on. Fakking dreadful.
And the words which kept echoing all the way home was: "Many people who have had breast cancer say the lymphoedema is the most challenging part. You brace yourself for chemo and you get over it. Then you get over the radiation. Then comes the lymphoedema."
She also explained why I was prone to it. First, the cancer was found in the lymph. Secondly, I was radiated over such a broad area. So they have whacked all the lymph glands there. Then they don't know how many lymph glands i have in that area. If only a few, and they are all whacked, then I am fakked. Also, some people have another pathway or something like that around the upper arm area. Don't know if I do.
Either way, all sounds bloody dreadful. Not sure how much more I can deal with, how much more I feel like dealing with but obviously will fight this with everything I have.