Thursday, 4 April 2013

A resource for breast cancer.....day 4

Today's task is to create a resource for the newly diagnosed and I had a slight heart sink moment! My thought was this is huge. Also I felt conflicted as I  know my style is to collect information and try to suffocate the cancer with the weight of my knowledge ...and that's exhausting. But I remember getting two leaflets when I was diagnosed the first time and they had photos of white haired women on the front. I thought long and hard about ripping them up and getting rid of them out of the tenth floor window of my hospital room. I didn't........ but that's how much I hated them.

So it's such a personal thing and timing is everything. Perhaps our best resource is a key contact like a well informed breast care nurse who understands you enough to sign post you to the right information at the right time. And someone who understands the important role that charities play in providing support and information too.
Breakthrough Breast Cancer information produces excellent information not only on treatment but also helps you understand the relevance of family history as well as facts on prevention and early detection.
http://www.breakthrough.org.uk/breast_cancer/family_history/new_guide_on_family.html
http://www.breakthrough.org.uk/document.rm?id=1924
http://www.breakthrough.org.uk/document.rm?id=1976

I was until two months ago a director with them so I admit bias! I have borrowed a paragraph I wrote in my previous role as Director for Scotland of Breakthrough Breast Cancer which is the introduction to the Best Treatment Guidelines for Scotland (above). The words I believe are very relevant to this task. They may be about the guidelines in Scotland but as a principle they are relevant anywhere. 

"Your breast care team can recommend the best treatment options for you based on professional guidelines, their own professional experience, your medical history and the specific details of your breast cancer. However, it is you who is best placed to consider how your own particular circumstances and personal preferences might influence decisions too. Therefore, it is best for doctors, nurses and patients to work together to decide on the best way forward.
My recent breast cancer diagnosis has reinforced for me the importance of having the right information at the right time. Having access to a publication like this best treatment guide and having a supportive and caring breast care team meant I felt confident and able to make the right decisions for me. I hope this can be the situation for all people affected by breast cancer in Scotland.
Having been diagnosed with breast cancer for the first time about 18 years ago and for the second time more recently, I can see how treatment has changed over time in so many ways. Previously, women had to settle for fewer options and live with the consequences of that treatment. It’s fantastic that, as Scotland progresses to more personalised care and treatment, those options are better and more targeted to each person’s individual needs.

Everyone is different and the treatment you are offered should be tailored to you. Although adjustments may be needed depending on your local services, you should expect your treatment to follow the general direction set out here. If it does not, we suggest you discuss this with your GP or breast care team. There may be a good reason for this, but you have the right to question your care and to receive an explanation that you understand.
Everyone in Scotland should have access to the best treatment and to information and support to help them to make the right decision for them. They deserve no less. I hope that, through this publication, we are helping to ensure that happens."


The following sites also contain some valuable support and information not just on clinical information but importantly financial advice and guidance too.

Breast Cancer Care provide support and information from diagnosis to living with cancer.
http://www.breastcancercare.org.uk/
Maggies are across Scotland at hospital sites to provide support and information for people affected by cancer.
http://www.maggiescentres.org/
Macmillan for information, including financial information and advice.
http://m.macmillan.org.uk/cancer-information

BCSM in US new website and weekly tweet chat with the awesome breast cancer advocates in the US. Watch and learn!
http://www.bcsm.info/

Do read @JBBC heartful blog  roundup connects the wise community, the experts of the lived experience of breast cancer across the globe. Simply outstanding.
http://journeyingbeyondbreastcancer.com/

The #BCCEU tweet chat is on Facebook too. Monthly tweet chats which aim to build knowledge and confidence of people affected by breast cancer in Europe. I support Marie of @JBBC in this and we would love your company every first Thursday of each month.

So do look them up when the times right for you....and if its not that's ok. Maybe your family or friends can help ? Or feel free to ignore...it's your path to walk....just know you aren't alone.

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