Category: helping others

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Update


The e-mail I sent (below) was in response to a call by Shirley Mertz from the Metastatic Breast Cancer Network, asking for volunteers who would like to share their story about living with metastatic cancer. I had sent my reply to my blog via e-mail, but the original message did not come through.

This past week I had another check-up at the hospital and this time Nancy joined me. Fortunately, everything is stable and my blood values were in line with last time. The drugs are working well for me. I found out I have the Luminal B subtype, which is ER positive and 50% PR positive (Her2 negative). I still have to finish my report of the conference. Tomorrow Victor is celebrating his birthday and his degree in tax law so it will have to wait for another day. Shirley sent me a very nice e-mail in reply.

I’ve enjoyed watching the World Cup games these last two weeks. I hope I’m back in time to watch the Dutch team on Monday against Chile, who seem quite good this year.

Till next time friends!

dear Shirley,
theank you so much for your e-mail asking for people who wish to share their story. I would very much like to share my story with others.

First of all, I am living in Europe, in The Netherlands to be exact. I went to college in the US and lived in the US for 11 years, although I’m a Dutch citizen.

I don’t know if you would want a story from Europe, but I follow MBCN and would like to have a chapter or network like MBCN here in Europe.

My story is one of hope and my recovery feels like a miracle to me.
I was diagnosed with stage 4 cancer in July of 2012, at the first diagnosis, when I was 42. There was no history of breast cancer in my family. Also, I didn’t feel anything in my breast because I was checking for lumps, whereas this tumor felt like my breast bone (upper part of right breast.)

The metastases were spread all throughout my liver, so that it was one and a half times as big, like a deflated soccer ball. My liver was in such bad shape that hormone treatment wasn’t an option because it takes 6 to 8 weeks to start working and my liver was barely working (bilirubin at 50). After the first 10 weeks of weekly chemo’s (AC) didn’t work well enough, I got very sick from infections due to neutropenia. I could not eat or talk becausebof the mucositis and stomasitis. Meanwhile, my oncologist thought the cancer was growing and didn’t have much hope. I did not think I would live till Christmas of 2012.

Fortunately, I was transferred in October to the National Cancer hospital where I was given Mitomycin-C locally in the liver. Two treatments and two months later the results were so good that much of the cancer in the liver was replaced by scar tissue. The liver stabilized and I could eat and talk again. From january 2013 I took Xeloda which reduced the cancer in the breast and since May 2013 I’ve been on hormone therapy (Letrozol). I’ve been in menopauze due to the cancer, not the chemo. I’ve gone back to work – I work as a IT architect contractibg for the government – and have been getting back in shape by execising and eating healthy. Most of the time I feel great. I look good again and can function almost as before. My message to others is that there is life after hearing you have metastatic cancer, and with the right treatment and frame of mind and support more is possible than you would expect. I’m not cured – the cancer is there there but inactive – so as lomg as the hormone therapy works I’m fine.

I also am part of a social network of other women with mets here, because there are very few resources for people like us. What bothers me especially is that patients with mets often don’t seem to count. The images and fundraising campaigns in the media suggest that either you can be cured (stages 1-3) or else you face imminent death (stage 4) and this frightens people. Research results and treatments for metastasized breast cancer are not easy to find here and there’s a big gap in knowledge between oncologists and hospitals. The many regulations slow down research projects and make the drugs exorbitantly expensive. Still, I am extremely gratefull for this second chance I’ve been giving at ut has nade me value my husband, family, nature, friends and my life so much more, I’ve taken up windsurfing and writing and work less.

That’s my story. I’ve bee writing about my experiences at http://www.sheilaghosh.com in case you’re interested. This is a public site so feel free to use anything that you find interesting, with a citation/ reference. I hope you don’t mind but I am publishing this letter on my blog so others can follow. If you do mind, let me know and I will remove it.

Please let me know if I can help in any way.

Kind regards,
Sheila Ghosh
The Netherands
+ 31 (0)6 54 913 912

Energy and persistance conquor all things

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Ambassador for the NFK?


Last week I received an invite for a conference for patients with metastatic breast cancer at the end of April in Philadelphia, the city where I went to college. It is a yearly event organized by Living Beyond Breast Cancer, a non-profit patient organization based in the US. Since then I’ve been thinking about going. Some of you already encouraged me to go, and Nancy is prepared to travel to Philly to attend the conference with me, so I won’t have to go alone. Today, my colleague and friend Yvonne encouraged me to go as well. So I’ve decided to go! The ticket is cheap and the conference itself is only 75 dollars. The hotel is not too expensive either, so no excuses there! So I’ll book my ticket this week and start organizing a trip to Philly, a place I called home for four years (ok, it was a long time ago, but still!).

I’m still a ‘board member’ of the Penn/Wharton club of The Netherlands and we’re planning to do a bid to organize the Wharton Global conference in Amsterdam in 2015. So who knows, perhaps I’ll have a reason to visit Penn as well. I’d love to see some of my East Coast friends while I’m there, but the time is short, so we’ll see.

This morning I had an interview in Utrecht with a manager and a projectleader from the Dutch federation of patient cancer organizations (Nederlandse Federatie van Kankerpatientorganisaties – NFK). I had applied for a volunteer position as an Ambassador to help people with cancer who have questions about (going back to) work.

Thirty people had applied to volunteer – they were counting on fifteen – and they are willing to accept everyone, and are meeting all the applicants, which I think is to their credit. So often, people judge others just on the ‘outside’ and the fact that they’re taking time to meet with each person who applied is really well done. While I was introducing myself someone was playing the accordeon outside – it was very strange. It turned out not to be an April Fool’s joke at all (that’s what I thought); no, the empty offices next to the NFK were now occupied by members of the elderly society (can’t quite think of the right translation but it’s close enough)  who were now playing the accordeon.

It was an interesting conversation and it was nice to finally meet some people who are working in the field. They are offering a training for all the volunteers at the end of May and also will meet with us four times this year to hear about our experiences. The work entails meeting with people – employees, businesses and patients – and answering questions they may have or pointing them in the right direction. It sounds interesting and I’m looking forward to the training.

After the meeting, I went to The Hague to finish my presentation and meet with my colleagues only to drive back to Utrecht two hours later for our meeting with other agencies. I presented the preliminary results of our Vision for data exchange and it was well received. At six pm, I drove home in my convertible in the sun – it was nearly 20 degrees centigrade. April has begun well!

Tomorrow I have a bone scan at the hospital and hopefully some time to relax in between the injection and the scan. Next week I’ll update you on the results. Enjoy spring everyone!

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A modern-day hero


Our internet and social-media driven society yearns for heroes, no less than the Greek or Romans did before us. A hero today is nothing less than the demi-god of those days, although the parentage of our modern day heroes cannot be traced back to the gods themselves. We value our heroes for their courage and bravery in the face of threats and adversity.

The Olympic games is the stage where many of our champions fight for a medal, for many the highest achievement possible. In a popular viral video from a Dutch talent show a 9-year old girl astounds everyone with a beautiful rendition of Puccini’s O mio bambino caro. When she is asked by the professional jury what she wants to be if singing didn’t work out, she answered casually: I guess I’ll go to the Olympic games.

During the Winter games in Sochi, we were rooting for our Dutch speed skaters, who managed to win medal after medal until we were wondering: what happened to the competition? Each day the nation was mesmerized by what our speedskaters had accomplished.

This year I intended to follow the Paralympics. Primarily to follow Bibian Mentel, a Dutch snowboarder who has been a source of inspiration to me. However, before I knew it, the Paralympics were finished.

During these Paralympic games, Bibian Mentel won the Paralympic gold medal on the snowboard cross. She has won all the world cup events this season for the snowboard cross so it wasn’t a complete surprise. But perhaps her greatest achievement in the Paralympics was getting the snowboard crosss on the program this year.

I’ve been following Bibian Mentel (online) for a few months now. She is a most remarkable woman. She was working on qualifying for the 2002 Salt Lake City Olympics when she was diagnosed with bone cancer. Four months before the Olympics, her leg was amputated, but 7 months later she became national snow boarding champion in The Netherlands, on one leg (beating the ‘regular’ competition). Before that, she was champion for 6 years in a row.

 

Since then, Bibian has dedicated herself to working with children with handicaps teaching them how to snowboard and coaching them in the various competitions. Her Mentelity Foundation has a clear vision: to encourage children and adults with physical impairments to focus on what they can achieve. On and off the slopes.

Together with the Dutch NOC-NSF organization, Bibian Mentel has fought relentlessly to add snowboarding to the Paralympic Winter Games. This year was the first year the para-snowboard events were included in the program. Besides competing in the event and winning a gold medal, she is also the coach for the ski- and snowboard-team.

This week Bibian will be honored in Sochi with the Wang Youn Dai Award, also known as an IPC award, along with Australian alpine skier Toby Kane. This award recognizes two Paralympic sporters for their contribution to society. As the short film The History of the Paralympic Movement shows: “…power athletes create a more inclusive society and inspire the world to believe that anything is possible.”

What few know about Bibian Mentel is that she is also a five-time cancer survivor. Her cancer has returned and has metastasized, and she is living with it every day. She is a true survivor and a role model for anyone who values persistence. For her, the illness that resulted in her amputation will most likely also cause her death. But she is always smiling, facing her enemy with courage and determination.

As Benjamin Franklin said “Energy and persistence conquer all things.” And so my hero Bibian Mentel shows us that the weapons of the modern day hero-warrior are tools of the mind as well as the body: persistence, energy en optimism. For all of us, these true heroes really do make us believe that anything is possible.

If you’d like to read more about Bibian Mentel, please check her website at http://www.bibianmentel.com/ or the Mentelity Foundation.  Bibian Mentel’s book – Met mijn goede been uit bed – is available via the Mentelity Foundation (in Dutch only) by sending a mail to info@mentelity.

 

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Drug company: Ailing 7-year-old Josh Hardy will get medicine – CNN.com


Update from CNN: Josh Hardy will get the medicine he needs after all!

Kudos to @chimerix and Ken Moch for helping this boy and his family! I think it is an admirable decision by this CEO to help this child, even though he had previously stated their position. It is also a reminder that no matter what, it sometimes is necessary to change one’s point of view.
http://edition.cnn.com/2014/03/11/health/josh-hardy-drug-study/index.html?hpt=hp_c2

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