Sunday, May 30, 2010

Found another cancer blog I like

Survived the breast cancer breakfast. Although I declined a pink ribbon pin on arrival - why will I wear a red Aids ribbon but not a pink breast cancer one? - and found most of the crowd there alienating, it was interesting to hear a young breast cancer survivor, as she called herself, a 29-year-old also on herceptin whoswe boyfriend found her lump.
And it was interesting to hear Mother Earth talk, presenting herself as this super honest, hyper casual doctor who is an expert on breast cancer, who is so honest that she even spoke about her going into early menopause cos of anxiety.
Interesting too that she differed from The Tango Man in two respects. She said that it was nonsense to say that reconstruction surgery could not be done immediately following masectomy - yet The Tango Man said if I did choose surgery as an option (I didn't), then it was best I did not have immediate recontruction and waited until I finished my treatment (herceptin I think he was referring to).
Also, she said it was ok to use an hormonal cream for vaginal dryness on breast cancer patients; The Tango Man is dead against it. Well, dead against it for patients who have a hormone-receptor cancer.
What I also enjoyed about the breakfast was talking to my sister's friend who sat on my left. She is in her 5th, and last, year of tamoxifen and when she said she spends so much money on medication for the side-effects of tamoxifen, I was astounded. She takes blood thinners (I only had to take them before, during and after a longhaul flight - for the duration of the holiday plus a week before and after, that is) and has reflux and.... I said I didn't want to know, as I don't want to even know about them.
Anyway, now into a new breast cancer blog. Robyn Semanko's I am 30 years old and have breast cancer. Direct and unsentimental, Robyn's blog is honest and straightforward. A mother of two from Minnesota in the US, I like the fact that she says she wants to stay angry because "when I am angry nothing can hurt me. I think we'll keep angry for now and get rid of something else that I don't need, like kindness or generosity or something, who needs those," she wrote on May 16.

Dressing up in pink just doesn't do it for me

Tomorrow is the annual breast cancer fundraiser breakfast. Well the one I go to. Not that I want to but I kinda feel embarrassed that I don't want to go, considering I had breast cancer last year. Went very reluctantly with my sister last year, and although she said I didn't have to go if I didn't want, hell, her friends would ask where I was - all knowing my history - and it just seems strange even to me that I am so anti it.
Firstly, have no idea what they raising money for. I have been told I am angry but regular mammograms don't stop you from having cancer; they just detect it. I found my lump below my armpit just under two months after having a mammogram and scan. Yes I know this is my usual story but the cancer had already spread to the lymph (two cancerous nodes). My oncologist said I would have had the cancer in my body for six to nine months..... can you just imagine if I had not felt that lump in the shower and acted on it, but had innocently pitched for my annual mammogram a year later? I shudder to think.
Anyway so not sure what they are raising money for. Mammograms for all? I dunno.
Then one has to wear something pink. What difference does that make? Ja it is the breast cancer colour but don't think that my wearing it tomorrow is going to make any difference.
Then on top of it the speaker is a doctor I saw twice before I started treatment and have huge problems with. Mother Earth, she thinks she is. Meanwhile, she has too many patients, rushes through her consultations (she did with my second one) and really, should not be pronouncing on cancer if she is not an oncologist, but a surgeon.
Oh well, had a similar rave last year.
In contrast, went to a party at 44 Stanley tonight, a fundraiser. The facebook page did not say what it was a fundraiser for which annoyed me (a friend alerted me to the event this afternoon). My friend did not know either. So when I arrived, I asked. One of the tenants here has cancer and this is to raise money for his treatment.
I didn't know who it was until someone told my friend with me tonight that has a brain tumour and more, so does his children (not sure if all or some or one), that nothing is working and the fundraiser was to raise money for pain killers so that he can die with fignity. He is stopping all treatment. I was glad I was at the fundraiser which was pretty enjoyable and mellow with live music plus had dinner at a very nice restaurant, Salvation Cafe, there.
Oh well sure the breakfast won't be too bad. And considering it is now 1am, guess I should get to bed.

Monday, May 24, 2010

Thinking of Daria

One "meets" all sort of people in the world of blogland and cancer. Sometimes it feels as if everyone who has cancer starts a blog. I know it was something I decided to do the day I was diagnosed. Not sure why. Until then I had been dead against starting a blog. Anyway, it has been great, well, at least for me. At first it was an ideal way to communicate with friends far away and keep them posted. Even friends nearby, when it was hard to repeat things again and again. But now it really helps me.
Anyway, I read blog after blog after blog on the Internet. But only a few really click me with me. One is Julie Goodale's Fitness for Survivors and the other now is Daria's Living with Cancer.
Daria lives in Edmonton, Canada.Her profile reads: "My cancer journey started at the age of 39 when I was first diagnosed with breast cancer. Treatment included radiation and chemotherapy as well as hormone therapy. In 2004, I had a recurrence in my chest area. The hormone therapy was changed with no other cancer to be found. Fast forward to 2008, an annual mammogram showed a lump in my left breast. After numerous scans and tests, the news was not good … cancer in my lungs, liver and bones. I've been on chemotherapy since August 2008."
Chemo since August 2008 sounds daunting, more than daunting but Daria is cheerful. And her blog is breezy and informative. Just seen she has another blog too, called Finding Meaning, but also see she has not written on it for a while.
Go for it, Daria! Think of you a lot. You sound like an amazing person. Would love to come visit you, take you for tea/whatever but you are in Canada and I am in South Africa.

Wednesday, May 12, 2010

more on herceptin and hair tinting

My old school friend, Christopher, read my previous posting about herceptin and hair tinting and sent this response to me via facebook. I find it so fascinating htat have decided to repost it here. Oh and by the way, he is a professor of chemistry I think it is (cannot remember now) in the US. Either way, he is someone I respect and trust:

Saw your "From Under my Hat" musings about use of tints / dyes / colourants. I would side with your former head nurse, and encourage you to wait. The chemicals in these processes (those needed to facilitate penetration of the colouring agent, as well as the colouring agents themselves) are rough on living cells. Anything that can promote penetration into hair will promote penetration into cells. Also, anything that gets into the hair can travel along it on the inside and reach the root. The dividing cells in the root already took a pummeling from the anti-cancer drugs, so it would be best to pamper to them for a while.

Tuesday, May 4, 2010

herceptin and hair tinting

Erica the head nurse who resigned and who has now left the oncology centre I go to, told me that I should not tint my hair for six months after I finish herceptin as the roots/whatever are still fragile.
Does anyone know if this is so? My hair itself has often been sore so I am reluctant to go against this advice - but wondering... would love to add some colour to my hair and now that it's so curly, not much I can do with it style-wise either. Trying to grow it cos thought a curly top would be fun but not sure how long that will last - next week maybe? - and if I cut it in a close crop, then more grey bits show and I cannot stand that.
Oh ... realise these are not serious worries. Just curious.
Oh and highlights - those don't affect the roots, or do they?

reading breast cancer blogs

Actress Lynn Redgrave died after a seven year fight with breast cancer. And six years ago her daughter and her published a a book about their fight/recovery/whatever.
Depressing. She was ok, then she wasn't and died.
Then somehow from reading up about her, got started on cancer blogs. Got onto an hreceptin side-effects forum/quick poll again and was quite horrified to hear one woman write: "I have my last Herceptin infusion on 3/5/10. The last 4 treatments have had the worst side effects for me."
Yesterday was my fourth last treatment and today is the first time I have missed a day of work because of side effects. Yes, once I left work early the day after cos I felt so bad and the one time I had the bad taste in my mouth I nearly went crazy.
I find reading cancer blogs so sad. Like when their family members come on and continue it cos they have died. Hate that.
Oh well. Going to get on with things now - i mean practical things like reading my book, packing my bag for tomorrow and so on.

got whacked this time

Didn't go to work today cos was still feeling whacked from the herceptin. It's funny. Every time I have a different reaction. Feeling much better now but did take some panados earlier.
But glad I am at home cos spent most of the morning feeling ... well, as if someone had whacked me over the head. Not a headache. Just exhausted. Thought of my colleague who spent three months away from work on sickleave. Don't think he was on his sick bed. Just wasn't at work. Do know he was in hospital for some of that time but really. Decided there was no need to push myself again and again and again....
Here's another great post from Julie Goodale, the cancer exercise fundi from New York whose blog I follow - it really speaks to me! This time it's about a study - well a collation of other studies - about the benefits of exercising post breast cancer.

Monday, May 3, 2010

had herceptin today

It was my fourth last herceptin today and please god all will go well and that will be the end of treatment. Was chaos today. They did not have me down for an appointment and so they had to use someone else's herceptin (she is due in later in the week) and so I ended very late because they dilly-dallied about it all.
Anyway, not feeling great. Tired and irritable. Going to sleep soon and it's only just after 9pm. They told me today i am the only one who has side effects from herceptin. Oh well.