After hearing all your comments on making my blog public, I decided to update the blog so that it can be found by search engines. As suggested by some of you, I have anonymized a few names already and can do so for you as well, just let me know. Yesterday I purchased a new domain name for my blog: the new address is http://www.sheilaghosh.com. The old address will point to the new one.
My goal is to find others who have metastasized breast cancer and who like me aim to make the best of life! So please spread the word! I’m also active on twitter (@sheilaghosh) and Facebook (www.facebook.nl/sheilavangeusau)
I’m hoping that the BorstkankerVereniging Nederland (breast cancer association of the Netherlands) will organize another meeting this year in October for patients with metastasized breast cancer – I certainly plan on going and hope to meet some more fellow survivors so we can create a stronger support community for other women with this fate.
Lately I’ve been reading more blogs by fellow stage 4 breast cancer survivors. I’ve been using Twitter to find interesting people to follow. I’ve been reading Vederzwaar’s blog. She is a young mother who is very passionate about following others and helping others. Very inspiring. She also has links to other women’s blogs and suggested that I could participate in the Amazones, a website for young (at heart) women with breast cancer. When I was first diagnosed, I used the forum and signed up but I am sorry to admit I had not used the site much afterwards. Mostly because the posts that were interesting to me were from a long time back.
Looking at the site again and logging in I found a number of wonderful messages waiting for me, which I had not seen because I didn’t know how to get notifications (still looking).
I’m also following #CaseofDees who is very active for Borstkankeractie (breast cancer action). A friend of a friend suggested that I could contact her. Through Vederzwaar I also looked at the blog DikkeRozePech (big pink bad luck), a very fitting title for the blog of another strong woman, who spoke at the seminar #hoopenvrees organized by the Dutch Breast Cancer Association (which I attended last year). It made me realize that there are a lot of women like me out there. But perhaps I have been luckier than I could have imagined because I actually can live a normal life, without pain. I even have work! Who could have guessed a year ago that I would be so lucky. Yes, I am truly blessed. Now time to figure out how I can help others with metastases. Since I’m doing so well, I wonder how I can even think to help others who are suffering so. But as Geshe Pema Dorjee says: to reduce the suffering of others, to make them happy, is to give meaning to our existence.
On Sunday and tonight I had the privilege of hearing Geshe Pema speak. He is a Tibetan lama who has a very humorous and wise way of speaking. He shared with us how to find peace of mind in turbulent times. It starts with helping others rather than ourselves. The key to this is self-confidence which we can achieve through morality – doing right and finding the truth. When we are self-confident we can stop thinking of negative and disruptive emotions such as anger, hatred, ego, jealousy and greed. Instead, focus on your ability to do good and help those who suffer the most.
Pemala, as his friends call him, has traveled to remote villages in the foothills of the Himalaya for H.H. The Dalai Lama to revive the ancient Buddhist tradition bodong. There he found so many people living in isolation, in poverty, suffering from cold and hunger. He and his friend Siri Weirum are doing everything they can to help stop the circle of poverty. The Tara Bodong foundation raises money to help the young girls who have no prospects other than raising children from the age of 15 and working hard to feed them. They are building a school to educate the young girls so that they can help improve their communities. These villages are very isolated, it takes 3 days by car and then two days walking to reach them. They have no sanitation, power and little food. Please read more about the Tara Bodong foundation and Siri and Geshe Pema’s work on http://www.tarabodong.nl. Every cent goes directly to the project. All involved donate their time, from teachers to the architect.
A very inspiring cause. They need to raise 360.000 euro’s so anything we can do to help makes a big difference!
The New York Times has a special page with personal stories of (mostly) women with breast cancer. What makes this page so special is that anyone can submit their story. Nancy urged me to enter mine and so I did. You can check out my story here. You have to scroll down quite a way. But please read some of the other stories too.
I have kept this blog private since I mention certain people by name. I would like to ask your opinion on whether I should make the blog searchable. The reason I would like to open it up is just in case someone else is searching for information that is hard to find (such as Mitomycine-C) and I might just be able to help by offering my experience.
I would appreciate your feedback: please respond to the following poll.
PS this is what I look like now. As you can see, my hair’s been growing. Here I’m enjoying Nancy’s ice-cream in the Vondeltuin in Amsterdam (september 2013).
I just received some magazines from the Dutch Breast Cancer Association. The editor very kindly sent them to me after we corresponded via e-mail. I was looking for a way to contribute and volunteered to do something (for lack of a better idea). In the issues she sent me were some interesting articles. One of them is about a new study in which women who have a metastatic diagnosis initially, are able to select an operation. In The Netherlands, if you get diagnosed with metastatic breast cancer there is no operation at all. So I still have both my breasts (sounds a bit odd but that’s the case); no mastectomy took place. Apparently a study showed that if women are operated, their survival rate increases from an average of 14 months (not-operated) to an average of 31 months with an operation. Neither sounds very appealing I admit. And falling into the former category, I’m very happy to announce my 15th month of survival this month! A bit of an odd celebration but I’m happy just being alive!
Op zaterdag 12 oktober houdt Borstkankervereniging Nederland de themadag hoop & vrees voor mensen met uitgezaaide borstkanker en hun naasten.
Het thema is dit jaar ‘samen verder’. Daarbij kun je denken aan samen verder met je naasten, met je behandelaars, je werkgever en collega’s. Maar ook aan reïntegratie en zingeving.
Het programma van deze themadag, die gehouden wordt in conferentiehotel Kontakt der Kontinenten in Soesterberg, bestaat uit lezingen, keuzeworkshops en een informatiemarkt.
Onderwerpen zijn onder andere:
nieuwe ontwikkelingen op medisch gebied
in gesprek met je behandelaar
reïntegratie en werk
Bovendien is er ruime gelegenheid voor informeel lotgenotencontact.
WhatNexter Kelley Gleason is a Stage IV Pancreatic Net Survivor of 5+ years. Greg Pierce, WhatNext Community Mgr talks with her about the journey with cancer, treatments, surgeries and persevering through it. Take a look and share with anyone you know that has recently been diagnosed with cancer to let them see that YES, you can survive even a “late stage” cancer.
Not only is Kelley a 5+ year survivor of a Stage IV cancer, but she also is dedicated to giving back and trying to make a difference through volunteering with the American Cancer Society as a Hero Of Hope Speaker. She is a member of the Great West Region which makes up several States in the NorthWest US.
Dr. Kathleen Ruddy is determined to find the answer to the question: Why?
She is the founder and president of Breast Health and Healing, which is dedicated to preventing breast cancer. Of all the funds raised for breast cancer research, only 2% is spent on research to find the causes of breast cancer and to prevent it. Dr Ruddy and her team have researched the causes and uncovered 70 year old research into the causes: breast cancer may have been caused by a virus. A new vaccine is ready for Phase I clinical trials, but few hospitals and researchers are ready to test it. Help spread the word!