Thursday, July 30, 2009

it started....

Oh, it's not the herceptin which has started - still waiting for the medical aid to authorise the treatment and the almost month long wait and scheduling it for every Monday has just added to my tension. No, it's the weight gain.
Am taking hormone tablets called tamoxifen, also to keep the cancer at bay. Was told it would make me fatter. Not from eating more, ie, not because i became hungrier but that I would just get fatter.
Then felt it this week. Gained 0.8kg. Oy. Now trying to eat less but not really succeeding. And both not able to and not allowed to do more cardio than the low-level 10 minutes I do three times a week at biokinetics, so fat chance of loosing it via exercise.
Should know my midday tomorrow if the herceptin has been approved. Think I say that every Thursday night.
Oh well. Will keep going. The oncology centre told me today they have been trying to have it authorised since July 3. Today is July 30.

Friday, July 24, 2009

medical aid rejects appeal to pay for herceptin

Discovery has rejected the appeal. First they declined to pay for herceptin because i did not surgery. Ok, know that is unusual for breast cancer but there was no primary tumour, only two cancerous lymph nodes, and it was on doctors' advice that I did not have surgery. Had radiation instead.
So my oncologist appealed against the medical aid's decision. Then today I heard they rejected his appeal. Oh, I do need herceptin they say, because i have a high-risk cancer, well, it's aggressive, but they cannot authorise it as a single treatment. I need taxol as well.
Now taxol as far as I know, is another form of chemo. I met a lady in the radiotherapy waiting room who had had it and now had no feeling in the tips of her fingers and on her feet. I had AC chemo and after four treatments, my cancer went away. To the extent that the doctor who did the scan said if I were a first time patient, he would never have known I had had cancer.
So why does Discovery say I need more chemo? I have since had another scan - when my neck swelled up during radiation - which was also clear so why give chemo to someone who has no cancer in them?
My oncologist apparently laughed at their suggestion.
"I am a reporter," I said to the oncology centre. "Give me an appointment with the doctor so that I can get the facts and figures, more than i can get from the Internet, and I will get to the CEO (well, I can try, can't I?) and I will fight for it."
But the onocologist said: don't fight, do nothing, he will sort it out by Monday.
"Between Friday afternoon and Monday?" I said. But we will see.
The Yoga Man says that Dr D, our mutual opthamologist, said that people get illnesses which challenge them - not the illnesses per se, but the way they affect them. And that my cancer has taken away my control and that is what affecting me the most: the ability to control my life.
Oh by the way, this is what taxol is. Gonna read about it now.
PS: Nearly forgot a crucial part of this. Herceptin, well, the 17 treatments I will need, totals to just under a million rand. Even if/when Discovery authorises it, they will pay only 80% and I will need to pay just under R5000 a treatment. Each treatment is once every three weeks and sometimes two treatments fall into one calender month.

Wednesday, July 22, 2009

adjusting to changed circumstances

I wonder if there was ever a time i did not do manual lymph drainage, I pondered tonight. I wonder. Now it's the way I start and end my day, regardless of whether it means I have to get up extra early, reach over and switch the heater on and start in the dark - or stumble in after 2am, switch on the heater and start. (The heater is cos it has to be done on bare skin, ie, no clothes on, but you can have a blanket over you where it is appropriate ie not for the one where your arm has to be up.)

Sadly, despite a good prognosis from The Lymph Lady yesterday, my arm feels much more swollen today. So did the long version of the massage tonight, not the shortened version she approved for early mornings when running late.

Now she is away and next appointment is on Tuesday.

Still have not heard about herceptin. My case is still before the Discovery medical aid appeal board.

Meanwhile, super busy socially. Last night when to Damon Galgut talk at Boekehuis (I have written on it previously) and tonight the Juliet Cullinan Wine Festival at Wanderers where I ate far too much cheese, bought (as in ordered) far too much wine and had loads of fun.

Tomorrow it's Phaedre. The film version of the (British)National Theatre's production of Phaedre starring Helen Mirren. Read The Guardian article about it today and it sounds f-a-b. So glad I booked.

Oh and in the interim the recession has really hit South Africa and there is groot (Afrikaans for 'big/lots of') drama and changes at work.

Monday, July 20, 2009

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.

Thursday, July 16, 2009

lucky me

Felt really good today. Went to The Lymph Lady for the second time this week. Yesterday it went down. Today more went down and two measurements stayed the same. Referring here to my arm, the one that has been affected by the radiating of my lymph nodes.
So once again my body is doing me proud. Fighting back. Being strong and healthy. Now it must just continue.
Ok, I do have a cold. Well a blocked nose. Need to do that upside down yoga pose to make it better. Did it this morning and it helped. Now all blocked up again.
The radiation oncologist (funny, she never got a 'name' here on this blog) told me i would be susceptible to flu for the next three months. Guess this is part of it.
Oh and have pains in my chest, in my armpit and along my arm but The Lymph Lady says it's from the radiation and can continue for 6 - 8 months and if I phone the oncology centre, they will tell me. Been meaning to phone to confirm this but just soo sooo sooooo busy.
Been out every night and doing 25 minutes of lymph massage twice a day, plus going to biokinetics, plus therapy, plus The Lymph Lady and working my butt off, there has not been much free time.
Home tonight. A quiet night. But still need to do the lymph massage. Not sure I can face taking all my clothes off (well, upper body) to do that.But would never dream of not doing it. The Lymph Lady asked me today if i suffer from guilt. Cos I want to miss yoga - she told me it was excellent to deal with the side-effects of radiation - to go to a book talk by Damon Galgut at Boekehuis. His book The Impostor is up for the Sunday Times fiction award. I think it's brilliant read the Guardian review, and last year complained it was not on the short list. Well, its release did not fall into the right time period. So now gunning for it to win this year. And going to miss yoga for this one-off opportunity.

Monday, July 13, 2009

no herceptin yet

Glanced at a post I wrote last Thursday......"Woke up today and just knew: I felt like myself again, like I felt before starting treatment on February 4, World Cancer Day"....sjoe, not even a week later and things have changed.
Don't feel like the old me any more, even if my taste in food is pretty much back to normal. (As I dribbled my homemade diet salad dressing over my homemade salad the other day, my colleague said: "Ah, Gillian is back!" Cos once again, I was eating what she recognised.)
Anyway, now not feeling at all like my old self, except for the fact that went to gym after work today, the first time since starting treatment. Ok, been going to bio but that is with a biokineticist, at a set time, mostly first thing in the morning. Tonight was like what I used to do. I just did less, and battled more with doing it, but enjoyed it immensely.
Been rather hassled lately although unsure how much of it is caused by the hormone tablet I am now taking daily, calling tamoxifen, trading under some other name. Think it is causing intermittent headaches - something i never usually have - plus intermittent depression. Well, think it made me feel miserable, out of the blue, last night.
But the biggest news of the day is re the herceptin. The medical aid have declined authorisation of it - BECAUSE I HAVE NOT HAD SURGERY. Ok, I must be one of the few women with breast cancer who have not had surgery but hell, did not have a tumour in my breast (only in axillary lymph nodes), no lump to be removed via a lumpectomy, and eventually (when the chemo led to a complete response, ie the cancer disappeared 100%) even the surgeon said "no surgery; have radiation".
The oncology centre said they, and i think she meant the centre but maybe it was the medical aid, had never encountered this before. "Well, I will have to sell my home (if I have to pay the just under half a million rand the herceptin will cost for 17 treatments). "Ridiculous!" said the woman from the centre.
Now The Tango Man is appealing the medical aid's decision, I have an appointment booked for Monday and I don't have to feel guilty that this morning I had decided I was too stressed to start my herceptin treatment this week and should postpone it to next week.

Thursday, July 9, 2009

what do you think?

feeling like myself again

Woke up today and just knew: I felt like myself again, like I felt before starting treatment on February 4, World Cancer Day.
It is difficult to know what it is that made me feel like myself again, but a kind of internal energy, an inner bounciness. And it makes sense. Was told the radiation would be active inside me for two weeks once I stopped treatment. Today was two and a half weeks since I finished radiation so it's likely that it's out or mostly out of my body. Hence this is the first time I feel like I used to feel.
Ok, not like I don't have side-effects. Come on, that would be too much to expect, wouldn't it?
Anyway, my arm is still swollen cos of the lymph nodes being radiated. Wacked. Doing my 25 minutes of lymph massage twice a day and seeing The Lymph Lady (well not again this week but three times next week and that is not my idea but hers; I'd see her twice a day if I could) and short of praying to make my lymph nodes kickstart back into action - and going to find out more about visualisation so I can try that too - dunno what else to do.
Then my mouth is dry but did not pursue trying to get hold of the medication cos things were overcome by the lymph drama.
Otherwise, okey dokey.
And now thinking about what a friend suggested last night: why don't I use this blog as a basis for a book and register for a masters in creative writing at Wits (University of the Witwatersrand)? Mmmmmm.. swore I wasn't going to write a book about this but know that this blog is a good diary from which to start.
Oh, had a brilliant moment in the lift today when someone I did a course with at work commented on my super short hair. Oh, u cut it, she said. Not really, it's a long story I said, then told her. She was flabbergasted as she said I looked so well, my cheeks were glowing - told her i was off to gym/biokinetics nogal (Afrikaans for 'as well/on top of it') - and she just could not believe i had finished radiation two weeks ago. She said I looked so well and it made me feel so good. You eat so healthily, she said (think we ate lunch during the course. Oh and must add: I am getting my taste back so on the way to healthy eating again. Drank wine again tonight.
Oh gosh. Nearly left out the most important thing. I feel free of treatment goetes (Afrikaans for stuff/things), but start herceptin on monday and due to start hormone pills on Friday (had to wait for medical aid to kick in). So just as my side effects are dwindling (except for the swollen arm), so I am due to start the next treatments with all their damn side-effects. Thinking of holding off the hormone pills till Monday. A weekend of ignorant mostly side-effect-free bliss.

Monday, July 6, 2009

hats off!

In the midst of all the drama re the cost of herceptin - see previous posting only a few minutes ago - nearly forgot: I am no longer wearing hats! Yesterday at my sister took my hat off for the afternoon, last night slept without any covering (was too cold and itchy before to do so) and today arrived at first gym and now work without a hat/cap (the doctors do not count as they are used to people with/without hair).
It is very short but fine, I think. Might post a pic later.
Last had chemo on Tuesday April 14 so it's nearly three months. And it's still micro short! But in the scheme of things, to use the radiation oncologist's words (again, see previous posting), it's ok. Ag, the hair loss was a trauma, not going to deny it.

the cost!!!

It has been confirmed. Herceptin , well, my herceptin treatment, is going to cost half a million rand.
It appears as if my medical aid will pay 80% of it but it still means I will pay R4000 and sometimes R8000 a month. I have to have 17 treatments every three weeks.
Also have to go on hormone treatment which has side-effects eg weight gain. Did not ask about herceptin side effects other than the heart. Need to ask about that.
Wish it could all be over.
Plus will be seeing The Lymph Lady for goodness knows how long.
The Tango Man just said "wow, wow, wow" repeatedly when I told him my arm was swelling. "Why do you keep saying 'wow'?" I asked.
He said it was because it seldom happens so soon. Usually years later.
Oh well. The full monthly cost of herceptin is more than I earn per month.
I asked The Tango Man what people do if they don't have the money. He said he does not know. That is not his concern and I guess it's not. He asked me if I had been in touch with my medical aid about it. I said no. Damn him. I explained I was waiting for today to find out more. How and why do they expect you to just know everything by osmosis? I had heard from the counsellor at the centre it was R20 000 a treatment but didn't really believe it.
The radiation oncologist said my swelling will hopefully go down in a few months. Said in the scheme of things, it was nothing.
Think this post is all over the show... guess it's how I am. Anyway, at work and need to buckle down and do something - as in WORK!

Sunday, July 5, 2009

busy day tomorrow

mmm.. have biokinetics at 8.30am and then two doctors' appointments, one after the other: one with the radiation oncologist and then the medical oncologist, that one to find out the next course of treatment which I think is herceptin. Would like a week's break before i start but let's see. And then on Tuesday see the lymph lady again. My arm is still swollen and now often sore. My fingers seem better. Pretty hassled about it.

Friday, July 3, 2009

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.
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.

Thursday, July 2, 2009

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.....

Wednesday, July 1, 2009

it's late so just a quickie

Find it really hard to go to sleep early but do need to get to bed soonish and read. Plus the heater - in front of a gas heater - is about to die so gonna make this a super quick quickie....
1) went back to yoga last night. fascinating cos, as expected, did not have the stamina to do the full class. Was there till the end but left out a fair amount ie all the high energy stuff. Started off really well and was so pleased at how flexible I am thanks to biokinetics. Then after an hour thought, that's it, had enough, if do any more likely to fall over. Then they started on standing poses, doing all the arm movements I need to do cos of radiation, so I did them and boy, was that hard!! To stand and move for what must be nearly half an hour...... later the teacher said I should have done the moves while sitting and must admit, did think of that. But felt marvellous when I left and will go back. Just that next time, at the teacher's suggestion, will spend more time just lying in recuperative, chest-opening postures.

2) Not very happy about my arm. It is starting to feel really heavy and sometimes also a little uncomfortable, well, sore. And my fingers are still a little stiff. Doing my exercises religiously and beyond that, not sure what to do. Oh, not exercises, they are massages or "home care" as the lymph lady dubbed it.