Lymphoedema Stories, the Untold Truth

Two Thursdays ago I went to the launch of a new booklet entitled “Lymphoedema Stories, the Untold Truth”.  This is a booklet produced by the Cancer Action Network, Northern Suburbs, in conjunction with the Lymphoedema Support Group NSW.   It is a very well written booklet of personal stories recounting how people have been diagnosed (often after a long period of time), treated, their compression garments, the cost of the garments and other associated costs of treatment, cellulitis and how they can take action to raise awareness.  Read more here http://www.lymphoedemasupport.com/lymphoedema-stories. 

Fran Boyle, Medical Oncologist at the Mater Hospital, gave one of the speeches and amongst other things highlighted the plight of the free lymphoedema therapy clinic at the Royal North Shore Hospital.  Last year a third day was approved on a trial of six months for non breast cancer lymphoedema sufferers.  It looks as if this third day may be discontinued at the end of September due to funding constraints.  That means six patients will not be able to receive free treatment for lymphoedema each week.  This is not acceptable.  If you’d like to help petition to save this extra day please download the template letter at http://canact.com.au/wp-content/uploads/2013/09/Lymphoedema_Template-letter-and-MP-Contact-Details_10.9.13.pdf to send to you member of parliament (some of the members may have changed since the election so you might want to double check details).

I went along to my local support group meeting on the following Monday night, ready to talk about the booklet and lo and behold, copies had been brought in to the organiser by the Cancer Council, so I was able to explain about it and as I reached the part about the RNS clinic funding one of the ladies jumped up and down with numerous copies of the template letter that she had picked up when she was receiving her treatment the week before.  Clearly we are all on the same page.


Brochures and information collected

The talk at the support group meeting was given by the Cancer Council – I am constantly amazed at their resources.  Their tag line is “Help life get better, support for cancer survivors, carers, family and friends”.  They have information and programs on numerous different aspects of cancer – counselling, Living Well After Cancer, young adults support, legal, financial and HR pro bono services, Cancer Connect, return-to-work resources, allied health professionals, Enrich programme, survivorship and specific treatment centres, Working Beyond Cancer and Cancer Connections.  I particularly liked the pamphlets on Exercise for People Living with Cancer and Living Well After Cancer.  Did you know that if you call the Cancer Council hotline 13 11 20, they can put you in touch with whatever aspect of support you need?  Their operators have all the different programs literally at their fingertips.   For more  information go to http://www.cancer.org.au/.