phoned the oncology centre today

Was relieved today when The Lymph Lady said I should be able to manage my arm and the swelling (caused from radiotherapy) on my own but that I should use a compression sleeve if I travel longhaul (she has said that before. However, I commented on how she was doing massage on both sides of my neck and I do it only on one side and she said: "No, I must do it on both sides!" So next time she is going to re-show me the manual lymph massage which I do twice a day.

Then my taste is better if not better. That is, not back to normal but thank goodness, much better. Phoned the oncology centre and they said they had never heard of it as a side-effect of herceptin. Asked if I have thrush in my mouth. Didn't think so and checked, I don't. But that can cause a bad taste in the mouth, said the head nurse Erica.

Then asked about my hair. It has been very sore. I swear. My hair, not my head. Last night was the worst ever, as it hurt even as I changed positions in bed and when I washed my hair this morning. It hurts on the top of my head, the hair on the crown. I thought I had better phone rather than wait a week to go to the centre for my treatment. "Never heard of it," she said. But she did admit, when I pushed her, saying I had read it on the Internet, that Herceptin can make one's hair thin. Yes, it can thin but it won't fall out in clumps. Ok. Mine does not seem to be falling out. Four strands in the bath today. Mmm..

Then asked about my muscle pain. I have noticed, and have discussed it with my biokineticist, that my muscles are ridiculously sore. If I didn't exercise, I would understand but I am exercising regularly - 40 min of moderate to mild gym (that's all I am allowed) three time a week, and yoga once. (Given up on tai chi cos it hurt my knee.)

"Aah, that is from the Herceptin," said Erica. "Flu-like symptoms which include muscle pain".

So now I know.

fitness for survivors: Exercise - Get It Wherever You Can

fitness for survivors: Exercise - Get It Wherever You Can


This is a great post. From Julie Goodale in New York. She is a certified Personal Trainer, American College of Sports Medicine (ACSM); and certified Cancer Exercise Specialist, Cancer Exercise Training Institute.

The taste continues

Just said: "I don't know how much longer I can handle this taste in my mouth". Said The Yoga Man:"You sound like you have an option". Ja, it's true. I don't have an option. But how long is it going to last? It's bad today and yet it's almost two weeks since I had Herceptin. Is it gonna be forever? Meanwhile I am sucking a sweet, a sparkler, even as I am writing this.

The taste is back

Want to preface this posting by saying two things: 1) am writing this from my cellphone so excuse funny symbols and things which occur until I have time to go to my laptop and correct them; and 2) I think this blog must sound like a litany of woes and moans and groans but in fact I am generally quite cheerful and think most people would not realise I have been sick or am still undergoing treatment - it's just that I am using this blog to document my progress in the fight against cancer and so not focusing much, if at all, on the rest of my life which is busy, busy, busy going out having fun and working hard. Perhaps if u follow my twitter updates you will see that.

Anyway, what I want to say is that as I finished my treatment last week, I got those dreadful taste in my mouth, Mentioned it to the cancer support group lady whom I had last met on the day of my first chemotherapy treatment a year ago. Of course she did not remember me but I remembered her. She comes to the oncology centre only on Wednesdays and the last time I went on a Wednesday was for my first treatment. She was thrilled when I told her how she had helped me so much, about explaining how not to move after taking the two - or was it three - day obligatory anti-nausea pill after chemo - it was best to lie in bed for had an hour then get up and have breakfast, as well as explaining in detail exactly what the immune compromised time meant in the second week after chemo.

Well, to get to the taste. I was talking to her when my Herceptin treatment ended and it hit me: there was this shit taste in my mouth. Mentioned it to her and then to the nurse who kinda shrugged it off.

Got progressively worse and I stocked up on sweets. Now this week it came back. Dashed out of work at a busy time yesterday to buy sweets and today the taste is mostly gone but present sporadically. My one sister said it's the taste u get when u pregnant - metallic - and guess that's the hormones in Herceptin which are causing it. Not going to phone the centre about it but will ask them when I go on the 1st.

why my arm is a barometer

I did not explain previous post properly. The radiotherapy for breathing cancer affected my lymph. Now when I am sickening for something my arm swells up and hurts like hell cos the Lymph which helps fight infection is not working properly. So my arm tells me before I know it that I am going to get sick.

My arm is a barometer

Am posting those from my phone which means some of the letters might come out strangely - dunno why it does that - but will correct mistakes when back on line. For now, in bed, with a cold and slight flu. Which brings me to the title of this post. Ever since I had radiation for breast cancer have had slight swelling of my left arm and been under high risk for lymphedema. I have worried probably daily re my arm. Is it swollen? how swollen is it? Its been sore for a few days, was up all over by everything from 0,5cm to 1cm. Was I sickening for something, asked a friend, rubbish I replied. But now am sick in bed, arm feels swollen but this time know that those means I cannot do the manual lymph and even checked that with The Lymph Last today. Exhausted, maybe its all the hot toddys I had. Well, had two, looking forward to ny arming back to normal again, Hope it goes back tp normal soon,

champagne to celebrate!

Thank goodness after some wobbles today - three calls to the medical aid the 'auth' lady at the oncology centre saying: "How good are you at praying? I think they're going to ask for something else... (yesterday she had been speaking about how maybe they needed a marker to show that I don't have cancer in my body - not sure exactly how one gets that marker....) - I got authorisation of my herceptin treatments at 13:06 today. Phew!! What a relief!
Going tomorrow at 10.30am (wanted to go straight away but for some reason involving needing a script and how The Tango Man would get annoyed at ... whatever, I agreed to go tomorrow.
Had delicious sparkling wine to celebrate over lunch with my dad and my sister. Pierre Jourdan Belle Rose or something like that, and immediately went out (there was a bottle store on my way out the centre) and bought a bottle on my way to the car. Plus a top brandy and a top tequila to celebrate. Was about to spend an absolute fortune on ensuring I could have the treatment this week, so what is some money on being extravagant?
Cannot believe how desperate I was to have the herceptin. Well, I can believe it. I don't want my cancer to come back and this is one way of helping it stay far far away.

still waiting for the auth

Damn. Still waiting for the auth, as they call authorisation at the oncology centre. Getting anxious. They had better authorise it. If not, the total cost is R220000 which is astronomical. No way I could access that kind of money. And I am halfway through my Herceptin treatment. Want it. Oh I know I bitch and moan about the side effects but I desperately want it. Want to have to help prevent the cancer returning. Tomorrow morning is my cut off. If it's not authorised then gonna borrow the money needed to have it hopefully on wednesday. Then will have three weeks to deal with the medical aid to get the auth.

Medical aid hassles again

Damn,..... My Herceptin authorisation has run out. Last time it took a month to be authorised. I cannot wait a month now..... I blame the oncology centre. They woke up tp it yesterday. Now I cannot have the treatment on Monday. If it does not get sorted on Monday morning, my family are going to give me the full amount to go ahead this time, then there is 3 weeks to sort it out for the next treatment.
The irony is that the med aid are now paying the full amount so I returned the money to my family - until now have had to pay 20%. Now it's a crisis 'cos I don't have the money needed. It's just under R24 000. Sure it will get sorted. Hope so. Cos the medical aid wanted me to have the chemo taxol with the Herceptin and the oncology said no. And there was a huge drama cos I did not have surgery and the bureaucrats could not process a breast cancer application without a surgery report.
Another irony is that the head of the medical aid will be at my nephew's barmitzvah this weekend. Wish I could corner him......

a year since I started chemo

Today is February 4, World Cancer Day, and it's a year since I started chemo. I remember it well. Started off with my hairdresser Carlos going off to buy a wig for the expected hair loss - never ever wore it and now working out what to do with it and it is blondey-brown whereas my hair is now dark, dark brown - and then went to chemo.
Felt like I could barely walk afterwards. Think my body was in shock from all the poisons.
Today feeling ok. Have a certain anxiety about the cancer returning, have anxiety about developing lymphedema in my left arm from the impact which the radiation had on my lymph - but at yesterday's visit to The Lymph Lady2 my arm was excellent, down 1cm in the upper middle area and 0.5cm at the top end and all the other parts down - but am well.
See at my last posting I wrote about fatigue - no longer there. Had some memory loss - well, difficulty in locating the right word for things - and some clumsiness - it started when I dropped my cellphone into the loo as it flew out of my hand at the oncology centre - but all that seems to be improving and will ask about it at the centre when I go for treatment on Monday.
Still on herceptin and taking tamoxifen but kinda getting used to the side-effects. Have a big family celebration this weekend - my nephew's barmitzvah - and intend enjoying every moment of it.