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!

my arm

showed my sister my arm tonight. ja, it is definately swollen on the muscle below the elbow on the top of the lower arm.
Mmmm.. damnit.
But at least no pain.

fasting today

I like what my dad had to say about this fast. "I think of it as a health law," he said.
Yes, it is Yom Kippur, the Jewish day of atonement and I always fast. Don't go to the synagogue, but fast, because I think it's good to have a day that is different to other days. But am hungry. Would love to eat something. A few things.
Have about three hours to go.

saturday

Decided on Saturday night - while at an amazing music concert watching this amazing band from niger called etran finatawa - that i was going to become a drug addict. Willingly. What I meant was that I could not take the pain - of my arm, in fact, then it was my fingers. I spent almost the whole day - while running around having fun - manipulating the fingers of my left hand. Cos they hurt. And my left arm was swollen. Where the muscles are - above the elbow on the side and below the elbow on top. Somehow, it went away. Massaged like hell, doing the manual lymph massage which i do twice a day anyway, just did it for even longer. Still swollen in front of the elbow but the pain has gone, and the swelling still seems minor so not hassled anymore. And not about to become a drug addict after all! Seein the lymph expert on Wednesday again.
Oh and interestingly enough, still itchy below my neck where I had radiation. Wonder if and when it will go away.

Being brave

Being told I was brave became a joke to me and a close friend in the past few months. People kept telling me I was 'so brave' when really i was doing nothing, just plodding along, as if there were a choice.
But the other night I did something I regard as being brave. I went to see Wit, a play about cancer. Now Christina Kennedy had seen kickstart's production of it at the National Arts Festival in Grahamstown about two months ago and raved. She said it was uplifting.

This is what the Tonight! reported: Christina Kennedy opened her review in festival daily newspaper, Cue, with, "Talk about ending the festival with a theatrical bang… this is theatre of the highest order that engages both the head and the heart, no question about it.

"(Clare) Mortimer's performance will leave you reeling, Wit will leave you stunned."

She adored it so much that when I bumped into her at a music concert last night, she mentioned she had seen it for the second time this week.
That is when I also saw, at the Wits Theatre, but must say found it harrowing. And lines burrowed into me: "I am not in pain because I have cancer; I am in pain because I am being treated for cancer" and "I always used to be so sure about things" (or something like that); "now I am less so". I know that feeling exactly. Suddenly everything is less certain.
I came back and said "I was brave seeing that". Does not feel such a big deal now but it did then.

intriguing breast cancer ad and blog

US ad for breast cancer awareness plus blog posting

panic over

Reread the original notes I got on my first visit to The Lymph Lady after someone suggested today I was overreacting - could one really get lymphoedema after minor things, eg being in an overheated car like I was yesterday?
Well, you can. I was not overreacting yesterday but luckily the drive to the garage to get the faulty temperature gauge fixed - a problem, I must say, the garage inadvertently created through sloppiness - was quick as I left later than planned so there was less traffic and the air was fresh. And I drove with my window down and the air blowing in.... and it was wonderful.
So things are ok although it did say in those original notes I read that be wary of pain in the affected area. Mmm... I have a fair amount of that.
Went to yoga tonight, now my usual Tuesday night activity, and it is pretty amazing. When I start off the night and have to do forward virasana - heels together, knees apart and lie forward with arms stretched straight out - it hurts like hell and I can barely stretch out my left arm (the side affected by radiation for breast cancer). By the end of the night, I look forward to forward virasana, as I stretch out my left arm - and stretch it further.

a sauna on wheels

Was nearly in tears tonight. My car - which has already cost me over R10 000 this month (new tyres, being towed, new clutch, a service, new what-what today which was causing a burning smell (cannot remember what part it is) ...and my CD player has been removed for repairs so that will up it even more...). Anyway, drove away from the garage already pretty pissed off cos of how much it has cost me and it's only four years old and has done only 65 000km... when it started feeling very hot in my car. Turned on the aircon and it became even hotter. Then my legs started burning...
Phoned the garage about three times. Finally I told them: there is hot air coming out the air vents...
Needless to say by then it was way past 5pm, almost 6pm, and they told me to come in tomorrow. That my car won't overheat and it's just my temperature gauge - which they clearly f,,,,ed up!
ONE BIG PROBLEM: I cannot be in very hot enclosed places eg a sauna cos of being high risk for lymphoedema. Now my car is like a sauna on wheels. Even with the window open. So going to drive to garage tomorrow with two windows open and trust I will be safe - hell, this is Joburg where it's not safe to drive with the windows open. But I don't want lymphoedema.
And one bit of good news. Opened my post and getting my surplus pension fund money from Pact(the former Performing Arts Council of the Transvaal where I used to work).... so that will cover this disaster.
Oh, nearly forgot to add: my arm, well mainly my hand this time, has been sore for about three days now. Stiff fingers. Worried as all hell and The Lymph Lady is at a lymphoedema conference in Australia... will see her again next week.

my affected arm

I think the damn trouble with the swelling of my left arm since radiation - noticed it from the day I finished my 25 radiation treatments I think it was - is not the swelling itself, albeit it terrifying that it might develop into lymphoedema, but the pain.
I keep having pain and it wears me down. Today it has been sore on the inside of my elbow.
Pretty sure my arm is swollen there today. Luckily so far the most my arm has increased in size is 1/2cm.
The possibility of this happening was so underplayed by the radiation oncologist. I wonder what the stats are for this happening. Mm... think they are low. But so far it has been one of the biggest impacts of my treatment. And I think I thought I was safe from this because I did not have surgery and did not have lymph nodes removed.

felt weird tonight

Was sitting in a restaurant tonight when suddenly I realised i felt weird. I felt dizzy, although I was sitting quite still, and I almost felt like I was seeing double, although I wasn't - if that makes any sense. I felt spaced out, really.
Think it's the herceptin.
Not sure how long the feeling lasted but maybe 10 minutes, maybe more.

had 3rd herceptin treatment today

.. and drove home feeling pretty headachy. Better now.
They battled to put the drip in too. Eventually the one nurse gave up and gave it to another to try.
And my arm which is 'high risk for lymphoedema" (The Lymph Lady's words today - but thank God don't have it), is sore. Ok, not a 10/10 sore but sporadically feels heavy and uncomfortable. Was a few mm thicker today around the elbow but not a big deal she said.
But still glad have decided to stay in tonight and chill.
Oh and interestingly, nurse told me to take tamoxifen last thing at night so that way minimise side effects she said. Mmm... gonna swop time tomorrow.

my curly hair

Had read that my hair - post chemo - was likely to grow back curlier and darker. Well don't think it's darker - although kinda hard to know as it was always tinted - but it is really curly now, what we call "kroes". I must say it does take some getting used to as it seems to be in waves. Used to gel it down in front with the nourishing creme I have been used from when it fell out from the chemo. But as from today, have decided it's pointless trying to keep it slick. Just going to accentuate the curl instead.

the scare

Found a lump last Tuesday, the day after I came back from Lesotho. Had been in a lot of pain on my left side, the side where I had had cancer and had been radiated. So much so that I had phoned and left a message for the radiation oncologist who sent one back saying I must ask the nurses about it next time I have herceptin and show them where my arm is pink (that is what the lymph lady said it was). Anyway, the pain varied from under my arm in my armpit to outside the arm.
In retrospect I think it was because I moved from dabbing my arm with creams to rubbing it. It was too early, methinks, cos since I have resorted to dabbing again, and rubbing only my arms, the pain has gone.
Be that as it may, the trouble was when the pain spread to the other side. Well, suddenly I was in agony on the other side, the non-cancer side, and so much so that I ended up taking my bra off in the evenings as it felt it was digging into me. This went on for about four days. I looked but could not see anything which suggested damaged skin or anything. So when I came back from Lesotho on the Monday, the next morning I was thinking: where is/was it sore? And, feeling around, I felt a lump to the upper right side of my breast.
I decided to do nothing until I saw The Lymph Lady the next day as she knows more about bodies than I do. She felt it, said: "there is something there" and suggested I phone the oncologist straight away. Phoned, spoke to the head nurse and asked if I should go for a scan.
No, said the nurse, let me speak to the oncologist.
When she returned my call, he could see me only in two days time. When I walked in two days later - after tears, sleepless nights and sheer devastation at the thought of surgery (was told would need surgery if the cancer came back) plus the intense chemo and radiation I would have so that I could barely walk, and what would happen if I then had swelling on both side? - the nurse saw me and said: "Oh, I forgot to tell him you were coming now."
Mmmmm..
He saw me about 5 minutes later, between patients, in the room where you get weighed and blood pressure taken before chemo. "I think it's a cyst," he said. And told me to go for an ultrasound scan whenever, not immediately.
I went yesterday. Oh, they tried to cancel it cos doctor had an emergency but I was so persistant and assertive (could barely believe it myself) that when they told him it was me needing a scan, he phoned me and told me to come immediately. I left the office in one second and raced down the road as if I had my hazards on (even thought of putting them on but then just drove with the attitude that they were on, except that I stopped at robots.)
Anyway, nothing there. Twice or maybe three time he asked me feel, to show him where it was. Think it was much smaller but nothing showed up on the ultrasound. Think it's gone. Think I am going to be fine. Now just want to live a life unblemished by all this cancer stuff, cancer talk, cancer anxieties. Now I know I am going to be ok, am healing and all will be well.

cannot believe how long i haven't written

Have had a pretty calamatous time but all is well. Last time I wrote I was on my way to Lesotho for the weekend. Well, I INSISTED on going in my car, and guess what? It broke down outside Kroonstad which is about half way, and I had to be towed into town, not ideal when it's after 5pm on a Friday and all the towing places are shut down for the night. And I am not a member of the AA cos in Joburg, you can phone at 11pm, join, and they will come and help you. Outside Kroonstad, however, you are f..., as there is no AA in Kroonstad. So I phoned a Dirk, then an Abraham, who referred me to a Pieter who sent out another Pieter - and all the time I am gooi-ing die taal (speaking Afrikaans) and thanking everyone for their country hospitality.
With no car to hire in the broader area (oh, the local Ford dealership Porters was great and met me at their outlet in town with a mechanic who then declared it was the clutch and about a five hour job), ended up spending the night in a hotel. And what an hotel. The Hacienda. "The ugliest place I have ever seen!" shrieked my friend. We had to restrain ourselves in the dining area with its high booths of blue fabric covered in plastic, all set off by fake brick-looking walls and a wine list of quite the worst wines imaginable. But seeing it's the only hotel in Kroonstad, where that night it was the venue for a matric dance and the next night was booked for a Rotary function, we did not have much choice on where to stay, especially since I had asked for a hotel (am allergic to guest houses where you stay with people who interfere with your life and want to be your best friends forever).
Anyway, got a lift to Lesotho the next morning, was frustrated at being there without a car, Porters sent their sales manager to Joburg to collect a part, and I fetched the car at midday on the Monday, after a good meal at Squirrels cafe in town.
But the dramas since I have last written do not end there. They just ended well though, thank goodness!