The Hibiscus Coast Breast Friends meet on the third Wednesday of the month at 10am at the Red Beach Methodist Church, Red Beach Whangaparaoa. For more information, please call on 0800 273 222 or email us.  

Latest news: A fascinating talk about New Guinea and some new Genome research (October)

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A fascinating talk about New Guinea and some new Genome research
From Group Coordinator Barbara McLean

To begin our October meeting, Coordinator Dianne demonstrated the Aria bodice insert she was wearing, which sparked a good discussion on the pros and cons, how they fit and how they move against other fabrics, etc. This was the perfect opportunity to advise our ladies that Naturalwear had closed the shop in Milford and were now doing regional visits on Mondays. This in turn led to a discussion regarding the prosthesis and bra allowances, and what happened when the time is up - does the money carry over or not? (apparently not).
 
One of our ladies mentioned a book called "Dying to be me" written by Anita Moorjani (pictured) who had gone into remission from a terminal cancer, it seems she is also the author of the book "The Journey", both of which we were advised to look out for. (You can watch a YouTube interview of Anita here).
 
One of our ladies who is currently in the States had sent us a link to a USA Today article called "Genome Project Links Breast and Ovarian Cancers" which was read out to the group. Basically this news items stated that scientists have been mapping all the genetic mutations in breast cancer, and found that triple-negative cancers - traditionally the hardest to treat - are genetically closer to ovarian cancer than to other breast cancers. This may explain why the traditional chemotherapy applied to most breast cancers has less success with triple negative breast cancers. It was suggested that the use of PARP inhibitors which work well on ovarian cancers may be of more use (and certainly less harmful) than traditional chemotherapy for treating triple negative breast cancers. The report concluded by saying that the BRCA1 gene dramatically increases the risk of both triple-negative breast cancer and ovarian cancers, and that doctors have long known of links between the two cancers.
 
Finally one of our group, Carlene Amos, spoke to us about her recent trip back to Papua New Guinea where she had lived for 10 years some 20 years ago. To a background of a powerpoint show of photographs she spoke of her time there, the people she was so fond of, and particularly her time talking to the local doctors (all American) about the incidence of breast cancer in PNG, and also talking to women with the disease. The doctors there basically cannot treat the women, as the disease is not discussed and the women only present themselves once the disease is so advanced as to be untreatable. One of the challenges many of the women face is just to find the bus fare to get to a doctor. Not only are the people very poor, but women are traditionally ranked very low in importance - "about equal to their pigs" was how Carlene put it bluntly. Their reaction to hearing that Carlene had had the same disease was repeatedly " But you are so well!" Survival there, it seems, is unheard of.
 
Another interesting fact Carlene shared with us is that these women live in an unpolluted environment and eat a totally organic stone-age diet, something we Westerners strive for to improve our health. She is convinced that in their case the cause is genetic. She spent much of her time there talking to women about how to check themselves, and how important it was to seek treatment as soon as possible. As well, being an artist, she took over a range of handcrafts to teach them how to make jewellery, toys etc from what are normally considered waste materials such as tin cans.
 
Her talk gave us a lot to think about - not least just how lucky we are by comparison.

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Fundraising, Fosamax ... and a bit about bodices

From Group Coordinator Barbara McLean

Unfortunately the speaker for our meeting, Helena McAlpine (who is fronting this year's Pink Ribbon Street Appeal for The New Zealand Breast Cancer Foundation) had to cancel due to ill-health so we changed the format of our meeting to a general discussion instead.
 
We started off with excepts from the BCS Newsletter (see our archived issues here) which sparked a few topics of discussion, then talk ranged over a variety of subjects, from fundraising and Daffodil Day  over the general shrinking of the charity dollar and how everyone preferred donating (door-to-door were generally favoured over call centre begging calls).

Then we moved onto Bone Density scans (both funded and unfunded, plus the budget version offered by some chemists where the feet are placed in something like an empty foot-spa to get the results), Fosomax & Fosomax Plus, infusions and the side effects and costs of these, and from there (somehow) to soil health and gardening!
 
The meeting finished with Dianne modelling for us the sample we had received from Aria Creative of their bodice insert, which was generally agreed to be a great way of covering a less-than-perfect cleavage area following surgery.
 
In spite of missing a brilliant speaker, we had a few laughs and all learned something new from our morning.

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Hibiscus Breast Friends enjoy some good discussions

From Group Coordinator Barbara McLean

We had a small but interesting meeting in July. Sheila Mooten, the new Cancer Liason Nurse for the Waitakere/Rodney area gave us a talk about her work. The area she covers is huge, from Browns Bay to Mangawhai, and from Waiheke Island to Glorit, while her enthusiasm for her job and the people she deals with is heartwarming.
 
After Sheila left we finished the meeting by discussing some of the topics in the latest edition of Upfront U Kaiora (the newsletter from the Breast Cancer Network), such as the benefits and risks of Herceptin, future possibility of targeting cancer treatments though DNA, and their Recipe for Cancer Survival.

A few times the discussion led onto environmental risks for breast cancer, so we directed ladies to the Breast Cancer Network seminar on this very subject on the following Saturday (a report on the seminar is on our site). One of the group was already booked to go, and others sounded interested.
 

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A spot of lunch at the Riverside ..

This report from Group Coordinator Barbara McLean 

For our June meeting we had our annual mid-winter lunch, this time at the Riverside Bar & Dine in Silverdale, a central gathering point for the whole group.

The food and service were excellent and there was lots of chatter and catching up over the meal.

Afterwards our photographer and group scrapbook-keeper Georgea took a couple of photos of us all using her delay timer for the group photo album which she keeps up to date so well, and we finished up with a few jokes to send us home on a cheerful note.

It was a lovely way to spend some time together on a dreary old winter's day!
 

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The magnificent lemon!

This report from Group Coordinator Barbara McLean

We had a great meeting in May with a lively discussion and a few good laughs.
 
I spoke about an e-mail I had received recently about lemons, using the whole lemon by freezing it then grating it to sprinkle on food and drinks (Deirdre suggested the best way to use the whole of the lemon is to dunk it in a glass of gin!). The email then went on to say that the whole lemon must be used as the skin has 5 times the goodness as the juice, and raved about the marvellous medicinal qualities, everything from treating worms to depression, plus it shrinks tumours, and is 10,000 times more effective than chemotherapy!
 
This sparked a good discussion on the difficulty of telling truth from misinformation of anything accessed over the internet.
 
I concluded with my findings on a very preliminary search of the web for information on IPT ( a controversial form of chemotherapy.) which I had heard about and wanted to know more. It turns out I am not the only one utterly confused by claims and counterclaims on different websites, and although we didn't reach much of a conclusion (beyond beware of e-mails that are badly composed or mis-spelt) we had a bit of fun with the subject.

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Low key in April - but no shortage of information

This report from Group Coordinator Barbara McLean

Our April meeting this week was quite small and low-key, as it was the school holidays so those attending enjoyed a general discussion.
 
With our mid-winter lunch approaching we talked over various possible venues with their pros and cons, and also the possibility of having a shared  lunch (breakfast, we were all agreed, would not suit most of us).
 
One of the group talked about how alarmed she had been, reading about the expected side effects of radiotherapy which she prepared for but never experienced, and we discussed how much information is required for informed consent versus information overload becoming alarmist.
 
We also talked about reconstruction, the 'ins and outs' of various options and the best places (in our personal opinions) to have it done. This led to us realising how normal this has become, with nearly half the ladies present having had some form of reconstruction compared with ten years ago when there were only one or two out of the entire group.
 
The meeting finished with a discussion about options for speakers for upcoming meetings while the lastest edition of Upfront UKaiora was being circulated, with particular interest in the article about Wendyl Nissan.

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A morning in Mallorca!

This report from Group Coordinator Barbara McLean

An informal discussion about breast reconstruction sprang up over morning tea as one new lady was asking about it and the three who had chosen reconstruction spoke of their own experiences. The new lady said afterwards this was very useful in helping her make her decision.
 
Our guest speaker was Muriel Dentner,  a member of our group who we hadn't seen for some time – because she has spent the last winter in Mallorca (or as we call it, Majorca). Muriel gave a great talk about Mallorca, a place which she clearly loves: about its steep terrain, the tiny little bays, the language,  the less lovely tourists and the best places to avoid them, about the beautiful cathedral, the fabulous and inexpensive food, the shopping (the vast supermarkets as well as bargain clothes buying), and about the people and their habits, especially their meal-times (incredibly late by NZ standards). It was a fascinating glimpse into an exotic and gorgeous country, and what it must be like to live there. We all had a great time hearing about it, and were greatly boosted by the thought that the world can still be our oyster, regardless of age, breast cancer, or anything else.
 

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'Whee-hee what a ride!"

This report from Group Coordinator Barbara McLean

We held our first meeting of the year in February and it was great to see everyone again.

There was no speaker this month but Co-Coordinator Dianne read out the notices regarding the BCS Mad Hatters Tea Party (18 March) and how women may pass on their unwanted prostheses to Naturalwear and Breast Care Products, which was generally accepted as a brilliant idea. We also briefly discussed perhaps having a Mad Hatters theme for our midwinter lunch, perhaps even making that a tea party.She then invited everyone to share their favourite Valentines stories, which gave us a few chuckles.
 
As we had no speaker (after giving out the BCS disclaimer that what we discussed was not  medical advice but rather personal opinion) I  spoke about a few diverse subjects ranging from a 110 year old theory on the cause of all cancers, which involves stem cells (although they didn't call them that back then), through to hot flushes and issues raised in the Cancer Prevention article in a recent issue of Upfront U Kaiora. All of these seemed to be of interest and sparked plenty of lively debate, particularly when we got onto the subject of Can Dogs Detect Cancer when it was unanimously agreed we would all rather be sniffed by a dog than squashed by a mammography machine! 
 
We finished up on this thought, garnered from a birthday card: 
"Some people think life is a straight line between birth and death, and their object is to arrive at the end in a perfectly preserved body. I plan to skid in sideways, chocolate in one hand and wine in the other, body totally worn out, shrieking "Whe-hee - what a ride!"
 
We all agreed, that's definitely the way to go.

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