Time for a new treatment

I love reading all the info you girls have provided us. Thanks!

As I am not from Australia, I was wondering if it is possible to write a formal letter requesting what we would like to be done and submit it to the parliament? Is it possible? I suppose if many many many of us sign it somebody will finally hear us!!

Amanda, what do you reckon, is that possible? does it sound a bit more powerful than a few e-mails? What do you think?

I love reading all the info you girls have provided us. Thanks!

As I am not from Australia, I was wondering if it is possible to write a formal letter requesting what we would like to be done and submit it to the parliament? Is it possible? I suppose if many many many of us sign it somebody will finally hear us!!

Amanda, what do you reckon, is that possible? does it sound a bit more powerful than a few e-mails? What do you think?

Hi Kathy,

Hope all is well wih you.

Take care.

Tracey xx

Hi Amanda,

I live in NSW so I wouldnt be able to catch up in Victoria. It took 17 months till I met someone in the local area with Advanced Breast Cancer despite requesting this on many occaisions. Why is it so hard?? We recently met at my home and enjoyed a green juice and healthy organic lunch together. In 2 weeks we will meet with another lady with advanced bowel cancer. We are all keen on living well and the support and encouragement has been nothing but positive. I have posted on my local area website to alert other women if they are interested in face to face contact.

I am probably attending the Ian Gawler retreat in april 10-20,2012 so wouldnt mind catching up for green tea if anyone is available.

A very good point was raised by Joy regarding the inside story insert not being made available to the wider breast cancer community. The articles in the inside story could be integrated into the Beacon without it being a separate insert. This would further educate and raise awareness of living with advanced breast cancer.

Also I would like to see an article in the beacon from the view point of people with ABC expressing need for specialised training for breast care nurses in the area of advanced breast cancer.

A very good point was raised by Joy regarding the inside story insert not being made available to the wider breast cancer community. The articles in the inside story could be integrated into the Beacon without it being a separate insert. This would further educate and raise awareness of living with advanced breast cancer.

Also I would like to see an article in the beacon from the view point of people with ABC expressing need for specialised training for breast care nurses in the area of advanced breast cancer.

I feel impatient with the data collection issue. This information is very important for clinical judgement and planning. I want to see more information collected than staging information and time to regression. There should be another way around achieving data collection. Why can't 1 or 2 people be employed to collect and compile this information.

This is a good topic for the beacon.

Hi Amanda, Tracey and Amy,

Thanks for the blog. Thinking of you and others with ABC, who are living with and fighting for a cure for this disease.

Kathy. 

Hi Amanda,

I am so sorry to hear about your news.  Hopefully the Xeloda will help.  i am back on that at the moment and being reviewed in about two weeks.    Just make sure you do in fact eat before you take it.  Yoghurt is good.

I agree that more needs to be done for those with Advanced disease.  There seems to be so many more people out there now living with Advanced and for a few years too.

When i was diagnosed just over six and a half years ago, I contacted support groups and different departments.  They all seemed to write me off then and there.  The support groups told me they couldn't help me and some of the medical professionals (not my oncologist) heard my prognosis and just went oh well you'd better get your affairs in order because this is going to get you soon.  The "mental anguish" that this places on a person with an already altered lifestyle and length of life is terrible.

We are still here and there are many treatments still available to us.  I know a cure would be wonderful and I pray for it every day, but I am also grateful that there are so many treatments out there that even though they cause us further illness and new and different problems, at least we are still here.

I want to be able to see my girls all leave school, my youngest in 3 more years and I would desperately love to see them married and with children.  A lot of people don't realise how these things in life are so important to someone fighting this disease and so many other chronic and life threatening illnesses.

Sorry I went off on a tangent there, but I have actually spent the day with a friend of the family who is fighting multiple myeloma and these were some of the discussions we were having today.  Funnily enough he has exactly the same thoughts that we all seem to have too.  Different cancer but the thoughts are all the same.

I wish you all the best Amanda.  Stay as strong as you can be.  We are all thinking of you.

Take care

Tracey xx

LOCAL MEMBERS OF PARLIAMENT

TO PROMOTE AWARENESS OTHER BC OR ABC GROUPS

oncology and radiation places put up notices re awareness

mcgrath nurses

major hospitals ie: peter mac in victoria research dept, 

research depts in other hospitals. 

most hospitals have sections that sort out grant and fundings etc.

NBCF / Cancer agencies / 

Lynne Kosky member parliament. 

other cancer agencies all states.

advertise the need / urgency /   in local papers or radio explain why etc. 

let other cancer groups know what we are trying to achieve.

re email addresses i can not legally just put addresses on this site but most can be googled.