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Help Hilary buy time with Ibrance for Stage 4 breast cancer

  • Target is reached!

      25 May 2019
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    Dear friends,

    So much has happened since my last update that I’m pinching myself to be reassured that it is for real.

    The headline news is that I’ve reached my fundraising target! This is so incredible and I’m feeling again the sense of total inarticulate inadequacy that I cannot express my gratitude properly.

    The momentum that took my fundraising campaign over the line today was an interview which aired this morning on Radio New Zealand.

    Here is the link to it and there are pictures in the gallery.

    https://www.rnz.co.nz/national/programmes/saturday/audio/2018696718/dr-hilary-chung-living-with-metastatic-breast-cancer

    Before today I was already convinced that I had guardian angels watching out for me as the fundraising total kept edging up by significant amounts.

    My heartfelt thanks go to all of you who have donated to my page. Your acts of generosity, have made so much difference to me. Now the burden of fundraising to pay for Ibrance, the drug I need to prolong my life but which is not funded in New Zealand, has been lifted from me. This is such a huge relief. More than that, I have now been on the drug for six months and I continue to be very well. The metastatic disease is controlled by the drug and there is no progression. Thanks to you all.

    I am so well that I am able to travel to Europe to attend the Global Studies consortium conference. I will also take the opportunity to visit family in the UK, including my 86 year old mother. This may well be the last time I see her and my brothers and sister in person. I go with the blessing on my oncology team who are delighted with my current health. None of this would be possible without you.

    You know that I will keep active and live as well as I can to honour your generosity. Last weekend I went searching for dolphins on my paddleboard and ended up going all the way from Mariangi Bay to Torbay Reef and back. Only afterwards did I measure the distance and discover that I’d paddled 12 kilometres in under an hour and a half!

    This is what Ibrance enables. I will continue to deploy some of this energy to speak on behalf of other women with metastatic breast cancer in New Zealand, most of whom don’t have access to this drug. There are also many others who have terminal cancers and rare diseases for which there are curative and life-enhancing drugs which again the New Zealand health system does not fund. I will continue to advocate for change so that fewer people die prematurely.

    Wishing you all good health and fulfilment. Life is precious.

    Hilary

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  • 10 months of medication!

      13 May 2019

    Dear friends,

    I can hardly believe it! The total has passed $60,000. That is the amount needed for 10 months of treatment. After 11 months Pfizer provides the drug without further charge. We're so close! I never imagined that this could be possible when I started this fund-raising page.

    I don't know all of you and many of you remain anonymous at your own choice. But thank you all with all my heart.

    I've added a short video of me paddleboarding at the weekend to show you how Ibrance is keeping me well! (If required use the password Hilary)

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  • Good health news

      11 May 2019
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    Dear friends,

    This week I got the results of my most recent CT scan and, thanks to you all, Ibrance is keeping me well. There is no change whatsoever in the status of the metastatic disease - it's in lockdown.

    I've been feeling great over the past few weeks. Some of the highlights for me include: giving a welcome speech in Chinese to a conference on Teaching Chinese as a Second Language - held at Auckland University; going to see the fabulous California Honey Drops at a benefit concert for the charity Sweet Louise which supports people with metastatic breast cancer (there is a link to Sweet Louise on my main page); paddlleboarding from Matakana to Snell’s Beach on Easter Sunday morning wearing rabbit ears; taking a week's holiday with my partner Trev to Tongariro National Park and doing lots of hiking - much more than I expected to be able to do; continuing to ride all over Auckland on my bike and paddleboarding on the Waitamata Harbour. I've added some new photos to the gallery.

    This Givealittle appeal now has just over a month to run. The total to date is close to $59,000. This is completely incredible and is all thanks to your generosity. I have around $7,000 to go to make the target! Please help me get there by continuing to spread this link far and wide.

    Thank you all,

    Hilary

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  • Advocating for change

      7 April 2019
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    Dear friends,

    As promised, here is an account of my trip to Wellington and its aftermath.

    Three weeks ago I went to make an in person submission to the Health Select Committee with respect to the petition mentioned on my appeal page for the public funding of two drugs, Kadcyla and Palbociclib (Ibrance). I was one of about twenty metastatic breast cancer ‘Metavivors’ (see https://www.breastcancer.org.nz/metavivors-nz) who made submissions on Wednesday 13th and 20th March. Last week the Committee questioned representatives from the drug manufacturers, the Ministry of Health and Pharmac. Full submissions can be viewed here:

    March 13th:

    https://www.facebook.com/hescnz/videos/637213516716696/

    March 20th:

    https://www.facebook.com/hescnz/videos/372288133374707/

    April 3rd:

    https://www.facebook.com/hescnz/videos/636967090076681/

    These HSC sessions have been given quite high profile media attention and I have been part of that. Here are interviews on Radio New Zealand:

    https://www.radionz.co.nz/national/programmes/thepanel/audio/2018686559/pharmac-funding-under-the-microscope

    and TV One:

    https://www.tvnz.co.nz/one-news/new-zealand/cancer-society-calls-more-accountability-transparency-pharmac

    and news coverage on stuff.co.nz:

    https://www.stuff.co.nz/national/health/111232611/terminal-breast-cancer-patients-push-for-pharmac-inquiry-and-the-funding-of-lifepreserving-drugs

    This is pretty emotional stuff with terminally ill women all eloquently and movingly requesting access to drugs which will enable them to live longer. These drugs are the internationally recognised standard treatment for metastatic breast cancer and yet are unfunded in New Zealand. We also asked for an independent review of Pharmac whose delay and obfuscation, even when its own specialist subcommittee agrees these drugs should be funded, are leaving women to die and their families in debt.

    New Zealand has an appalling record in the treatment of those with metastatic breast cancer: the median survival from the time of diagnosis of mets is only 16 months in New Zealand compared to 2-3 years or longer in other Western countries. New Zealand spends only 5% of its health budget on medicines compared to the OECD average of 14%; it spends only 0.34% of GDP on medicines compared to the OECD average of 1.4% and it ranks 19th among the 20 OECD countries with respect to access to new medicines.

    We are asking for more money to be allocated to the budget for medicines and prompt access to medicines whose benefit is proven for those with terminal illnesses like ours. The written submissions to the HSC are here:

    https://www.parliament.nz/en/pb/sc/submissions-and-advice/?custom=pet_80652

    Fifty people tragically lost their lives on March 15th. The country rightly continues to be outraged and broken-hearted. An average of fifty women die from metastatic breast cancer in New Zealand every month. I wonder if enough people care. There seems to be so much resistance to changing the way we do things. I hope that the HSC will act to make a difference. I don’t like being in the spotlight but I agreed to media interviews because it all seems so wrong. Thanks to you all I am on the right drugs and my situation is looking good right now. As you can see from the submissions not everyone is as fortunate. I am using some of the time your support is providing me to advocate for my sisters.

    Nga mihi nui.

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  • Aroha

      29 March 2019
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    I have deliberately not posted any updates recently as a mark of respect to those who perished in Christchurch. I found it impossible to actively fundraise for myself, even though my life depends on it, when there is so much tragedy, sadness and loss of life. I have been truly moved by the way New Zealanders have come together and I can only hope that there is positive change as a result.

    As Director of the Global Studies programme, representing in New Zealand a field that prioritises intercultural communication and understanding, I contributed in a small way to the commemorations that have been taking place. I am posting a photo of me on my way to the Pakistan Association of New Zealand event in the Auckland Domain last weekend. I’m grateful for one of my students for providing me with an appropriate form of dress, which I also used for a Global Studies event at the University.

    You on the other hand have been amazing. Thanks to you all, my total now stands at almost $56,000 which is only $10,000 away from the total needed to pay for Ibrance for 11 months. (How can I say ‘only’ about $10,000? – it’s crazy.) In the process the $54,000 milestone was passed – which represents nine months of treatment. This unbelievable generosity continues to enable me to live fully. I went to my oncologist this week for a routine appointment and my blood tests show clearly that Ibrance is working. I’ve been paddleboarding (including paddling up the Puhoi River), going on bush walks and working at my veggie garden. (Images are in the Gallery. With thanks as always to my partner Trev who takes the photos.) And of course I ride my bike all over the place. I have energy and I feel really well. What can I say? I live life to the full in your honour. And I try my best to live every day meaningfully, honestly and caringly. OK, sometimes I have a bad day and get a bit grumpy – please forgive those times.

    In my next update I will get political and report on my trip to Parliament and subsequent media appearances. Not today, the day of our National Remembrance Service in Christchurch. Aroha, we must continue to surround them with aroha.

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  • "one of our darkest days"

      17 March 2019

    This has been a huge week for me, but a huger one for New Zealand.

    I will send a separate update about my week. This update is not about me.

    It is to remember the victims of the events in Christchurch on Friday and to reach out with aroha to our Muslim whanau.

    I have been using these very moving cartoons in messages to my students.

    https://www.thisisinsider.com/cartoonist-reimagined-national-symbol-of-new-zealand-for-mosque-shooting-2019-3

    https://www.instagram.com/p/BvBDW9Oln7R/?utm_source=ig_embed

    Our hearts are broken.

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  • Busy with the new semester and feeling well

      9 March 2019

    Dear friends,

    A lot has happened since my last update.

    The best news is that the drug is working and I have not had the side effects that I had with the first cycle. My blood count is fine and I am on the third cycle and feeling very well. All recent scans and blood tests indicate that the cancer is currently contained. I was out on my bike yesterday in the pouring rain and loved just being alive in it!

    Recently I was interviewed by the university newsletter and that interview is now on the university website. Here is the link to the article.

    https://www.auckland.ac.nz/en/news/2019/03/07/global-studies-director-on-personal-push-to-pharmac.html

    It is focussed on my upcoming trip to Wellington this Wednesday when I will make an in-person submission to the Health Select Committee, making the case for government funding for expensive drugs for metastatic breast cancer like Ibrance. I am finalising my submission this weekend. Wish me luck!

    The last month or so has been very busy. The new cohort of Global Studies students is almost triple last year’s numbers and the enrolment period has been full on. I hope we have managed to solve all enrolment complications. It is so exciting to see so many new students eager to join the programme. We've just completed Week 1 of the new semester. Now I can return to growing the programme: new conjoint degrees, new international opportunities, new partnerships from industry, government and the not-for-profit sector. So much to do and thanks to you all I have the health to do it.

    Recent publicity has brought more attention to this site. Your generosity unceasingly overwhelms me. This weekend the total has exceeded $50,000. I never imagined that this could be possible when we launched the site just before Christmas. It remains impossible for me to thank each of you individually and many of you remain anonymous. I hope through these updates to continue to express my heartfelt gratitude to all who have contributed to this funding campaign. The target is in sight! Thank you all so much!

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  • Feeling great!

      9 February 2019
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    Dear friends,

    My first cycle of Ibrance had its challenges: my white blood cell and platelet counts went a bit too low and the drug also affected my liver. This meant I had to take a two-week break but have now started my second cycle and am feeling really good. It is quite common to experience strong side effects when starting a new drug. This second cycle is going much better. After having to take a break from both biking and paddleboarding (and feeling quite grumpy about it) I am now back on both. Today I went out on my board on Lake Pupuke - it was a good work-out against the wind bumping over waves which were a bit bigger than I had expected. What a great way to get back on the water! I'm sharing a photo of me returning to the shore taken by my ever-patient partner Trev.

    In this update I also want to acknowledge my students. Both current and former students have donated to this page and sent wonderful messages of support. Teaching you all is an honour and a great pleasure. Seeing you all take the opportunities offered by your studies and find your own direction is the greatest reward any teacher can have.

    You are all awesome!

    The total is almost at the amount for 8 months of treatment. Together all of you are helping me live longer and maintaining my quality of life. Thank you so much!

    Hilary

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  • A great start to the New Year

      17 January 2019

    Dear all,

    Today marks a significant milestone in my treatment- I have now completed my first cycle of Ibrance and am feeling very well on it. As long as my white blood cell count is ok, the treatment plan is one week off then start month 2.

    Much has happened since my last update.

    Firstly, your fantastic generosity has brought the total raised so far well past the amount for seven months of treatment. I’m now well over half way!

    I continue to be humbled by your overwhelming generosity. It really troubles me that I can’t write to each of you individually but I hope through these updates to express my heartfelt gratitude for all your support.

    Last week my partner and I recently spent a week on Tiritiri Matangi, where we both volunteer. For those who are far away, this is a bird sanctuary which protects and educates about New Zealand’s threatened bird species. It is a very healing place and we both came back physically and mentally refreshed.

    http://www.tiritirimatangi.org.nz/

    I am further blessed by the return yesterday of my daughter who has just spent a year studying in China. It is wonderful to have her home.

    Now I am back at work managing what is looking like a huge cohort of new students for the Global Studies programme.

    Exciting times!

    Thank you all for accompanying me on this journey. I can’t travel without you.

    Very best,

    Hilary

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  • Happy New Year!

      31 December 2018

    Dear friends,

    It is New Year’s Eve and as I think back over the year that is ending tonight, I am overwhelmed with a sense of good fortune. I have fabulous doctors, I’m surrounded by the support and love of family and friends and I also have the support of all of you.

    My situation has brought me so much – I value every day; I appreciate everyone I meet; I have wonderful students and colleagues and I am in touch via this site with many of the people I have known over the years.

    Today your amazing generosity has brought me to the half-way mark in my fundraising quest– the total has passed $33,000 and you have enabled me to begin treatment. I never imagined that this could happen!

    Thank you all.

    I wish you a happy and prosperous new year.

    Hilary

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  • I have my first packet of Ibrance

      27 December 2018
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    Hello everyone!

    Today is a momentous day! I have my first month’s supply of Ibrance and will begin taking it tomorrow morning. This would not have been possible without the support of you all. I am so grateful.

    To celebrate the sunshine, I decided to ride my bike into Grafton from West Auckland where I live to collect the drug. It’s a round trip of around 36 km, mostly on dedicated cycle paths. It was a cool ride – even if the wind was a bit strong on the return journey. This is me arriving home with the pack of Ibrance. It seems so small and inconsequential. You take it for 21 days and then stop for a week. Each of the 21 capsules therefore costs $285 – blows my mind!

    I hope you are able to rest and relax during this holiday season.

    Very best,

    Hilary

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  • On the road to Ibrance

      26 December 2018

    Dear friends and colleagues,

    Thanks to your continuing generosity there are now sufficient funds for 5 months of treatment!

    I hope you all had a good Christmas day.

    Today I braved the Boxing Day crowds to go the pharmacy. It appears that Ibrance is too big a deal for a local pharmacy. I have to go to the city hospital.

    I’ll go tomorrow – picked up a couple of bargains in the sales instead!

    Thank you for your continuing support. Please keep sharing the link.

    Hilary

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  • the best gift for Christmas

      25 December 2018

    Dear friends and colleagues,

    Yesterday, I went to my monthly appointment with my oncologist and, because of all your help, I came back with my first prescription for Ibrance. I know it is a bit of risk, but because you have already provided me with almost 5 months of treatment and because it is most effective when taken as early as possible, I am going to go ahead.

    The pharmacies are all closed for Christmas but I will share the moment with you when we go to get it.

    It's the morning of Christmas Day in Auckland, New Zealand, and after torrential rain for the past two days, the skies have cleared and the sun has returned. Even the weather is on my side today!

    Thank you to you all for your kindness and generosity that has brought me to this point. Please keep sharing my link - as will I - as the journey is not over yet.

    Meri Kirihimete me te Hape Nū Ia ki ngā iwi me ngā hapū katoa

    Hilary

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  • another milestone met

      21 December 2018

    Dear friends and colleagues,

    Today was the first day of my annual leave.

    I have spent the day running errands and on my return I discover that the four months treatment milestone has been well and truly met.

    Your amazing support, is now coming from far and wide. Thank you so much for sending this link across your networks and thank you to old friends and colleagues from across the globe for thinking of me.

    Wishing you all tranquillity in the pre-Christmas rush!

    Kia ora rawa atu,

    Hilary

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  • how to say thank you

      20 December 2018

    Dear colleagues and friends,

    Only one more day has passed but thanks to your extraordinary generosity the total is now well over $20,000. We made it to three months of treatment when we reached $18,000 but now we are well on the way to four!

    I am troubled by the impossibility of thanking you all personally and many of you remain anonymous to me at your own choice.

    Please nevertheless know that you are making all the difference to my life and that of my family.

    Ngā manaakitanga,

    Hilary

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  • overwhelmed ...

      19 December 2018

    Dear colleagues and friends,

    I am utterly humbled by your collective response to my appeal. I have a good working knowledge of six languages but I really have no words to express my appreciation of your generosity.

    In only 24 hours you have already given enough to cover two months of treatment. Now I am starting believe that the drug is within reach.

    Thank you with all my heart. Hilary

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    • 20/12/2018 by Ronald

      You're an inspiration to us all: your commitment to the Global Studies program is giving a lot of the next generation of professionals a whole new mechanism to see the world and to use their knowledge to achieve international success.