Hello wonderful people in my life,
Wow. What a week! Can’t believe that I am back in Auckland after a whirl wind trip to the USA.
A massive thank you to those of you that pledged and once I hit the $9000 target donated to my project which went over $10,000. Beyond stoked and feeling incredibly humbled and grateful for your support. I tried my best to thank everyone via email and various messaging services so if I missed you please know that your contribution is appreciated. http://www.givealittle.co.nz/project/jessweller
A massive thanks to The Breast Cancer Foundation of New Zealand for their generous grant of $1200.
Houston was wonderful. Cold, wet and rainy but wonderful. The city itself is incredibly vast and too me felt as if the buildings were apart of a giant set of lego and were stategically placed to create a concrete jungle. The motorways were huge and it felt odd driving underneath several intersecting lanes and road ways. It is certainly true that everything is bigger in Texas! Yes I saw a lot of large cowboy hats and boots. A massive thanks to Chris for having Kate and I stay in his home. One of the most amazing things that I have learnt about travelling is that the people you meet are always willing to help out where ever you are on your journey.
Managed to make it to the Rodeo which is a must do if you ever make it to Texas and they have a concert every night so we were lucky enough to see John Legend live who was amazing. They have the bull riding and the barrell racing but what I didn’t expect to see was what they call “Mutton Bustin'” which is small children holding onto a sheep for dear life! Hilarious! There are so many food outlets too. Tex Mex and BBQ in giant portions make for an entertaining people watching experience. Was cool to have a tour of the city with Chris and was yet again amazed by the size of the US supermarkets especially Whole Foods – a natural and organics store. That’s definitely something I could see us having in NZ. Always love seeing the palacial houses in the wealthiest areas of city’s I visit. So massive and extravagant some of these houses are so big I just don’t understand how people can afford them. Old money apparently. Facinating.
So the main reason I went to the USA was to attend the YSC Summit. http://www.summit.youngsurvival.org
The YSC Summit is Young Survival Coalition’s annual conference. It brings together a multitude of organisations that all in their own way have some impact on people who are curious about, are going through or have themselves been through Breast Cancer.
The organisation itself was set up back in 1998 when three young women who felt there wasn’t enough support out there for young women with Breast Cancer – young being under the age of 35 in most cases. This event brought together 600 women and their co-survivors (family, friends, partners) to inform, support, educate, inspire and hopefully shed some light on the journey ahead and how to be supported in moving forward. YSC’s main aims are to improve services and treatment for those going through Breast Cancer and aim to increase public education, awareness and support for Breast Cancer. http://www.youngsurvival.org
There were several incredible exhibitors who all had amazing things to offer. My mind was blown by the amount of information and a week later I am still trying to digest what I saw and spoke to people about. I was so inspiring to meet people that are dedicating their lives to help those of us that have had a Breast Cancer diagnosis. There was information on everything including genetic testing, underwear specifically designed to support you after surgeries, nipple prosthetics (yes fake nipples), implants and many of the amazing organisations that have information and support for those going through the disease.
There were a number of seminars we were able to attend. I was lucky enough to head along to seminars regarding Fitness and Nutrition, Advocacy – Taking the reins and leading the movement and The Oncologist in You – Understanding the medical language behind your diagnosis. It was amazing to hear medical professionals who are the leaders in Breast Cancer treatment in the US speak. It is amazing to chat to those working in the field who are kind, helpful and doing their best to help those going through it.
I met a lot of incredible women who are advocates like I am trying their best to create movement’s to create change. Often though we are all met with challenge’s that see reality hit us harder than most would expect. So many of these amazing intelligent humans want to get involved within the cancer sector but can’t due to the lack of professional experience (mostly medical) and the financial burdens that come with living and life. I wish that I could do this full time because I know the benefits would outweigh anything else. Looks like I may really have to get creative. Figuring it out slowly.
Something I’d like to see more of at these kind of events is more prevention based education and how to make society more aware and bring down the risk factors that could lead to a cancer diagnosis. I am currently finding it hard to be honest about my findings and I am getting frustrated by the enormity of this disease. It is effecting so many yet society can’t identify the causes and fear stops us from truly being aware. There are so many myths flying around out there about breast cancer and young women and young people are I feel neglected in the education of the risk factors and prevention due to the fact it is less common to get the disease in the younger age groups. There is no real reason why cancer starts but those of us that do get diagnosed at a young age are often more susceptible to getting aggressive subtypes of the disease – especially in Breast Cancer.
While in Houston I was able to talk with some amazing women who are doing all they can to ensure that more people know about Metastatic Breast Cancer. It was hard for me to comprehend that these people are living with Cancer and it will in most cases end their life. The hardest thing was that one woman I spoke to had had breast cancer a couple of years back and had gone through treatment (chemo, radio, double mastectomy) and was cleared with no evidence of disease present. Then it came back full force and is treatable in a pallative capacity – meaning pain and symptom management not end of life necessarily. Being aware of your own mortality is one of the strangest feelings twisted up in this whole cancer experience. I can feel myself getting angry not because I had cancer but because I can’t stop people I care about getting it, especially people around my age. This should not be happening to our generation.
There were a few amazing speakers at the conference two of who have a lot of influence in advocacy and awareness. Both of them effected personally by cancer, one a surgeon, the other a fifth generation survivor of breast cancer.
Dr Susan Love is a surgeon, a prominent advocate of preventative Breast Cancer research and is also an author. She is one of the most respected women’s health specialists in the US. It was amazing to hear her speak about the importance of those of us who have been through the disease to keep talking about it. It was fascinating to hear about the breast cancer movements and listen to how October has literally become the month that we colour pink – but how do we move onto the next level? It seems that a plateau has been hit and there needs to be some kind of new life and momentum on awareness and prevention around the disease. Most funding for Breast Cancer Research in the US comes from the Department of Defence and this has been happening since the early 1990’s. Advocates are involved at every level of decision making and have an input on what is researched. I think the most significant thing I took out of Susan Love’s talk was that we are so focused on a cure that we are forgetting to focus on the cause – the question is how do we find out what it is and how do we stop it. Prevention is the beginning. To read more about Dr Susan Love Research Foundation follow the link – http://www.dslrf.org
Melanie Nix, a fifth generation breast cancer survivor said that she grew up around breast cancer. Her mother, grandmother and aunt all women close to her that lost their lives to the disease. The advocate for African American women was diagnosed with Triple Negative Breast Cancer and a carrier of the BRCA1 gene mutation when she was a mother to two young children. I was blown away by the energy and courage of this woman and after the presentation I got a bit teary eyed when I had the chance to meet her. That does not happen to often but I was pretty overwhelmed and was so inspired by Melanie to do something more than what I am doing to save lives, provide support and get more awareness out to young people. Melanie spoke about being confident about sharing our stories and reminded us that advocacy comes in all kinds of shapes, sizes and levels – it’s about doing something that makes the movement push on, up and out to speak to the wider community. It’s about marrying a passion and a talent and changing the thinking of those around you. To read more about Melanie and her involvement in Breast Cancer advocacy check out her website http://www.breastcancercomfortsite.com
Advocate – “One who actively support or defends a cause”
Feeling pretty stoked to have made the Daily Mail! It’s always interesting seeing how other people interpret my story. I have to laugh when some of the story is embellished slightly – without my doing so in order to encourage readers to click the link. Hope you enjoyed the pictures!
So I am back in the classroom at the moment teaching Art at Glen Eden Intermediate and will be doing that for a few weeks so that will keep me going for a bit. The job market is not so great at the moment and because I am looking to work within the cancer and health sector it is proving difficult to find something that fits my professional experience. There are not many teaching roles out there either. It’s funny being back as New Zealand is so chilled out I think I was used to the efficiency in London – especially regarding work. It just does not happen here. Haha hopefully things will click into place just hoping my patience will click back in sooner rather than later. It will happen when it happens right?
I have just booked flights to attend Cancer Con which will be held in Denver, Colorado at the end of next month – so back to the USA I go, YEAY. I am really looking forward to catching up with some of the people who I met in Houston and meeting plenty more who are doing amazing things educate the public more about cancer. There will be a lot of young people at this conference – both men and women who have been through the cancer experience so it will be great to get some insight from those who have experienced different medical systems, treatments, surgeries, struggles and of course talk to them about their journey and the things they wish they knew about cancer before they were diagnosed. http://www.cancercon.org.
Life has been a bit crazy the past few weeks. I honestly feel like I am still trying to find my feet being back in NZ. Even though I am really happy to be back I feel like there is a big hole in my life that I am not sure how to fill it. What I have realised over the past couple of days is that sometimes we need to be patient with life and let things happen. Writing down what you want or saying out loud offers your goals, ambitions and desires out to the universe – put it out there – yes Sarah thank you for the inspiration on that one. With all that I am doing I have a constant uncertianty that keeps presenting itself. Is what I am doing right? Is it really making a difference? and how am I going to make it work? in the long term. Today I meet with someone who encouraged me and gave me something really profound to think about. As we were talking she said to me – “You really need to look at all that you have done and reflect on how amazing you really are”. Don’t be afraid of owning success, be a coffee bean.