Wednesday, January 27, 2010

no longer exhausted

it's now 11.40pm and i am no longer exhausted. So think it was work which made me tired. The place. Think there is a lesson in there.


Totally drained. First I thought it was just a stamina problem but have been pretty tired throughout the day today. Must be the herceptin. It's a common side-effect (I had it last week). I hope it doesn't last. If it persists, that is, if I feel tired tomorrow, will phone the oncology centre and ask if there is anything one can do. Bet not.
Today at gym the bio and I agreed that my left arm is swollen. Wasn't happy about that as can be expected, especially as I have started to lose weight so my arm should also go down. (The preventative pills I am taking, tamoxifen causes one to gain 5% of one's body weight so consistently eating less than normal to try to lose weight.)
Anyway, went from gym to The Lymph Lady2 (my one is on leave, in Kenya climbing mountains), and the swelling of my left arm had come down from last week. She said I will always have to do the lymph massage. Cos it will always be a threat. And that's if I am fortunate enough to not develop lymphedema.
Gonna have some coffee in a polystyrene cup - am at work and being damn naughty writing this instead of working but am too tired to work and is the end of the work day and everyone else has gone home and I am off to the symphony concert - the Mozart Anniversary concert - so guess I cannot be that tired!! Read more about the Mozart festival on in Joburg

Tuesday, January 26, 2010

My poor friend

I spend much of my day worrying about my arm. It's still summer here so I stretch out my arms often, turn them around, and think/worry/agonise: is the left arm swollen? Is it thicker than the right arm? Do I have lymphodema? Will I have to wear a compression sleeve? - I feel sick at the thought.
Well now my friend CJ has had two strokes and cannot talk and is paralysed on the right side where she has no sensation and goodness knows what the left side brain damage - very bad, say the doctors - really means.
And she turned 40 in October. She is a really determined person and is now off to rehab where I am sure what she can better, she will. But I keep thinking - sure she wishes she had just lymphedema or was at high risk of it like I am.
This sure puts lymphedema and a compression sleeve into perspective. Her strokes and their outcome have jolted me. Pray for her and go out there and live your life to the full.

Thursday, January 21, 2010


Had a pretty sleepless night - might have been too muhammad coffee - but feeling much calmer today. It feels good. Not sure how arm is today but I feel ok.

Wednesday, January 20, 2010

a different lymph massage

Feeling much better but still a little hassled re my arm. Saw The Lymph Lady's work partner yesterday who does a different form of lymph massage - Norton vs Casely-Smith - and she said my arm was swollen. When I shrieked "swollen???" she changed it to "puffy" but that was just from looking at her. Her method of measuring the arm is different (every 4cm)so it is hard to tell - but I insisted she measure it as I need a base rate and I am seeing her for three sessions while The Lymph Lady is away. So now I keep staring at my arm and wondering. And asking close friends like The Yoga Man and my bio if it looks swollen.
One cannot live under such pressure. I need to chill.
Now it is 11pm and I still have to wash dishes, do lymph massage and work out what the hell I am going to wear to fashion week tomorrow night, as need to wear it from the morning or at the very least, take it with me to work. Such pressure!! Lol!!!

health is a precarious thing

A friend of mine just had a stroke. Well, if what I have heard is correct (contacted her partner but said I don't expect a response), she had one stroke about two days ago and another more recently (today?) while in high care/ICU in hospital.
And she has just turned 40. About three months ago. Fakking hell.

Monday, January 18, 2010


No longer feeling miff. Just groggy and still popping Panados so alternating between feeling fine (like now) and feeling awful. The herceptin.

1st mammogram post treatment

Feeling drained. Had two major scans and the stress was all-absorbing. Well, terrifying. Today, waiting for the doctor to come do the ultra-sound, post the mammogram was .. well, the minutes dragged as I wondered why he was taking so long to read the mammogram. Luckily all was well. Very luckily. The thought of having to start treatment all over again, which in my case would also have meant a masectomy, was just too much. So grateful. Then mistakenly threw my cellphone into the toilet at the oncology centre, dunno how that happened but clearly a hilarious and annoying part to a day filled with gratitude.
On Friday had a muga scan, which checked my heart in terms of the rate it emits. This included a scan of the heart. Luckily that too was all in order. Had the test cos all the treatment I have had - the A/C chemo, radiation and now herceptin, can affect the heart so before I even started treatment had a muga to set a base rate. That was 71. This time was 65. Not unexpected after a year in which I wasn't allowed to exercise for about five months (I did low energy exercises and yoga), followed by months in which I not only had to build up stamina but am now not allowed to do more than 15 minutes of moderate cardio.
Was pretty horrified today when the doctor said I cannot do more FOR THE NEXT FIVE YEARS! But I can go for a long walk, he said. Thought that would be cardio too.
Had herceptin today and was starting to feel funny tonight, so been popping panados.
Oh, The Tango Man, unlike his head nurse, said it is possible to feel bad on herceptin, that everyone responds differently.
Feeling depressed tonight. Think it's the aftermath of all the stress. Not depressed. Just not on top of things. Well, I am on top of things. Am so grateful. Really. Just think might get into bed and take it easy.

Thursday, January 14, 2010

saved from the sleeve

There is a God. My arm has gone back to normal. Apparently it went up more than 1cm in some places. Now it's down again. I lost 2kg and did massive amounts of massage although today was told not to do the manual lymph massage if you are sickly!! I had no idea.
Anyway, am talking in circles.
Apparently my arm went up cos I was sickening. On Monday The Lymph Lady asked me if I felt sickly, if I was sickening for something, and I said no I felt fine, just miserable.
Well, by the next day I was ill - and apparently that caused my arm to swell. Cos the lymph is not working properly. But then it went down. Plus I lost 2kg - combination of the stomach bug which plagued me and during which I did not eat, plus making a major effort to eat minimally.
I had come to terms with the idea of wearing a compression sleeve cos convinced myself it would not be permanent. Well, today The Lymph Lady told me that once you have lymphedema, you have to wear the sleeve - always. "You can take it off if you go to a wedding," she said. But that is it. So I have to do everything I can to ensure that I don't wear one. I don't want to be permanently disabled in that way.
So I am still back to high-risk. The Lymph Lady says that the latest study is that anyone at high risk should wear the compression sleeve all the time but:
1) the test for body composition to determine your risk is not available in South Africa, and
2) the final results of the study are not yet available.
Think there was a third reason why I don't need to wear one but cannot remember it.
Anyway, she said I should still go see her assistant - have an appointment once a week while The Lymph Lady is in Kenya on holiday - so off to the sticks I go!! Well, not quite 'the sticks' but pretty far away from where I am. But guess that's not the issue.
I was sooooo chuffed today. Felt my determination had helped. Now not so sure but still glad and still eating minimably to bring down my weight and so, too, the possibility of swelling.

Wednesday, January 13, 2010

D-Day for compression sleeve tomorrow

Not sure where the expression D-Day comes from - it's a war term, isn't it...guess I could look it up - but anyway, tomorrow is D-Day for a compression sleeve. Still in denial that I will need one but do think my left upper arm looks thicker than my right one. But thank goodness the pain has gone. Now my fingers are just ever-so-slightly stiff.
Am more resigned now to the idea of a sleeve mainly cos determined it will just be shortterm and that I will get better. And although The Lymph Lady is leaving the country for three weeks, have made appointments with her partner even if it is damn far away. What difference does that make if it's needed.
Hold thumbs for tomorrow.

Tuesday, January 12, 2010

Down 1.2kg

Down 1.2kg so feeling better on that level. Now weighing what I weighed on Friday. Then weight crept up 0.2kg by saturday then 0.9kg by Monday. Hopefully this will affect my arm and it will have gone down in size, And this is not wishful thinking. Lose weight and arm goes down but if have lymphoedema , if lymphoedema has kicked in rather than just having slight swelling and being at high risk for it, then in Shit, In denial that might need a sleeve. But glad I shook that sudden excess off. Will continue to eat minimal again today. Eating but mostly plant like the dietician said whom I went to see months ago when my weight started creeping up from the tamoxifen. Now its 6.30am and time to do my lymph massage, an extended one as per instruction of The Lymph Lady. Aiming for 30 minutes.

Monday, January 11, 2010

Dire news from the lymph lady

Arrived at The Lymph Lady today feeling pretty miserable. I am tired of not feeling well, I said. Two of my fingers are slightly swollen and sore and my hand and arm are are. Plus when I got on the scale this morning I was up 0.9kg from yesterday. Now I know I ate a lot yesterday, went out for lunch and ate some garlic bread and some custard and so on. But 0.9kg in one day? That would make it 3kg I have gained in the last two months. Must be the damn tamoxifen. Then, as usual, she started measuring my arm. I don't want to add to your miserable day, she said, but..... And damn it all, but my arm was up everywhere, except for my wrist, by about half a cm. A sudden huge swelling, Is it the mosquito bite at my elbow? Is the 0.9kg due to water retention, from the Lymph/tamoxifen? Either way she declared I need to get a compression sleeve, with the hand/glove-like part, and wear it all day every day. Up the lymph massage - just did 45 min - plus where possible do it 3X a day. Get a friend to measure my arm and if not down by Wednesday, to get the sleeve which costs about R1500 she said, when I started crying, In the end it was decided I would leave everything till Thursday - after which she leaves the country for 3 weeks holiday in Kenya. Now starving myself hoping it will bring it down - it does help a lot - had a few steamed veggies for supper plus some roasted tomatoes - and praying, trying to imagine what it will be like to be disfigured with this sleeve. I cannot believe I will need it.

Saturday, January 9, 2010

Sore fingers again

Think the fingers on my left hand have been stiff for more than a week now. They hurt and think the fingers are a little puffy. All to do with the swelling and lymph problems caused from the radiation I had. Not a good sign I don't think but seeing The Lymph Lady on Monday so she should be able to sort it out and tell me if it's worth worrying about, Well, how much I should worry.

Wednesday, January 6, 2010

oy. not sure i like reading things like this...

Ja, not sure I like reading things like this but then, on the other hand, it's useful to be aware of potential problems as then it is easier to deal with them.
interesting article from BBC News

Monday, January 4, 2010

A little bit of extra puffiness

This is no big deal but saw The Lymph Lady today who pointed out that I am now slightly puffy in what The Yoga Man says is the armpit chest - essentially the side of the chest between the armpit and the boob. Not anxious just thought it was worth noting. Told her my fingers have been stiff again, very stiff, and my arm a little sore and The Lymph Lady said it should improve now that I am back at regular exercise.
You see, I go to this private gym and it closed a lot over the festive season. The biokineticist said she'd heard (from the bio interns) that I had been there a lot over the holiday period. Lol! Not a lot but did go and also exercised at home as well, at least once.
Find it frustrating when they are closed and it's a public holiday and I have so much free time and my hamstrings are tight from lack of exercise but really it's a great gym and have no intention of changing it.
Booked my muga scan today. (Btw, posting this from my phone and don't know how to change paragraphs.) Anyway, had a muga scan before I started chemo a year ago - feels like an eternity ago - as a base test. Essentially all the treatment I have had and am having - the chemo, radiation and Herceptin - can affect the heart and cos of the cumulative effect of all this, they need to monitor your heart. The muga scan measures the rate at which your heart emits and it is done at a nuclear medicine department, I had mine done at Morningside Clinic in Sandton. Well, I am hardly an athlete but was pretty fit when I had it last year, pre-treatment and all that and gyming for an hour and 25 minutes 4X a week. My rate was in the 70s. Wonder what it will be like now. Hope my heart is ok but the head nurse at the oncology centre said if my heart was affected, would feel tired. The bio says I would not know. Oy... I do find the exercises I do at gym quite strenuous. Not the cardio - only allowed to do 15 minutes cos of the heart threat and not allowed to get out of breath - but the rest. Went today, and loved it. Did 40 minutes. Good night. Tired now but night get up early to go to gym again tomorrow.