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

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.


Good results!

Dear friends,

Last wednesday, October 2nd, I had an appointment with my oncologist, Dr. Baars. She had good results for me. The MRI showed a reduction in the tumor from 1.1 cm to 0.8 cm. No new lesions or washout (whatever that means) have appeared. The previous scans had shown that the lymph nodes appeared normal again. The CT scans, as always, are difficult to read since cancer cells cannot be distinguished from scar tissue. And since the Mytomycine-C treatment of the liver, the liver is mostly scarred. But the areas in which they could discern tumors, the scans showed a reduction in these tumors as well. So the cancer is clearly in regression/remission.

Even my oncologist seemed relieved. My next appointment is on December 4th. I mentioned that my left arm has been painful the past few months. Usually the pain occurs at night. Sometimes I wake up in the middle of the night with pain in my left arm and hand. In the morning, the stiffness usually disappears. Dr. Baars referred me to the hospital neurologist (18th of October) and a nurse took pictures of my neck and arm. So we’ll have to see.

Last night, Marc Dufour stopped by. I was home late because I volunteered at the Undergraduate College Fair, organised by John Terwilliger on behalf of the Ivy Circle. The fair took place at the International School of Amsterdam. Quite a lot of kids stopped by our Penn table , and Flor  – who graduated from the University of Pennsylvania in 2010 – and I enthousiastically explained the admissions process, how great Penn is, and how good the faculty is. A lot of young students were really impressive and wanted to study in the US. There were quite a few Dutch students as well. I heard it is very difficult to get in Penn these days, standards are even higher than when I attended.

Marc is visiting his family and friends for about two weeks. It was good to see him, it has been a few years since we had seen him and of course, that was before he (and I) found out we have cancer. Marc has been following a special treatment, which has kept him alive for longer than he had anticipated. This past May, however, scans revealed new tumors in his lungs, which are now the size of orange/grapefruits. He underwent radiation therapy and feels much better. We had a great time but had to break off our conversation because Victor wanted to watch Three Days of the Condor – a great movie btw with Robert Redford. Ofcourse Marc and I knew every scene already and inevitably, Victor dozed off.

This morning I went for a run (it was really warm!). And today we went to the framer to get the enlargements of our wedding pictures framed. It’s quite expensive but it’ll be nice to have them hanging in our house. Tonight is Ada’s party but I’m a bit tired. And tomorrow I have Aerial Yoga which is great fun! I’m not at all limber but it’s like playing around (we do yoga postures  in draped fabric which hangs from the ceiling).

Have a great Saturday evening and Sunday!

A run

First I rowed 5 minutes on our rowing machine. But that took all the breath I had out of me. I’m not very fit! I will try to work out more.

Ineke from Viore had warned me that the chemo really impacts the muscle tissue. After she told me that it finally dawned on me that the weight loss wasn’t fat (unfortunately my tummy is still as big as it used to be) but muscle. So now I’m determined to stay fit, as my oncologist suggested. Also I need to gain weight, so the best way I guess is to build muscle tissue.

Then I decided to go running. It went very well. Perhaps I’m a bit too eager, since Silvia – a good family friend who is a cancer researcher – advised me to reduce the time and intensity, and go more frequently. For now, I ran my usual round of 6 km but at half speed, and I paused in between and walked for a few minutes each time to keep my heartrate down.

I think I’ll go again Saturday but do 4 km instead of 6. I hope the exercise will help my muscles gain strength again.


–English —

Yesterday Victor and I stopped by Viore. Carien had tipped  me weeks ago and the hospital had given me a beautiful card with the information. Viore is a walk-in center for people with cancer. It is located near the hospital, hidden between the trees and a small parking lot. It was difficult to find at first.

Once inside, we were kindly greeted by two hostesses who offered us something to drink (tea for me, water for Victor). I could tell my story and they explained about the activities they offer – from art to yoga to sport guidance – and gave us a tour. It had been a lab but with the help from many volunteers and sponsors, it has been transformed into a homey environment with different rooms, a living space with a kitchen, a yoga room (decorated with a seascape and beach look), a small fitness room and even a beauty parlor. What else could one wish for?

Today I returned for the sport guidance session. A very experienced physical therapist explains how to use the different machines and monitors your progress. Since running with Flo isn’t working out too well (she usually isn’t in the mood), this seems like an excellent way to stay fit. And so it is. Two experienced and powerful ladies (A & L) were already working out (both have cancer, L is cured and coaches others, A had bad news like me but is super positive). They’re very trained. But when I had to work out on the apparatus (the kind you see in gyms with the bars and rolls) I couldn’t even lift 5 kg with my arms. The only excuse I have is that I never exercise my arms but now I will need to start. With Ineke’s help, I will try to work out at Viore every Tuesday. Fortunately I could get by on the bike, rowing machine and treadmill (running).

Afterwards we drank some tea and talked and then the rain came pouring down. L had come by bike from Blaricum and went back home via the rain. Very impressive. She told us about her experiences with a breast reconstruction gone bad. Very unpleasant, but she is very brave. And A as well. She has metastases in her head and stomach, after almost being cured. It must have been an awful disappointment, but she is very spirited. Fortunately for me I now have two very pleasant trainingspartner I can also laugh with. It’s a lovely place, Viore. Please let anyone know – it is open from 11 to 4 pm in the vacation period and then from 10 to 6 pm. Thanks Viore and all volunteers, hostesses and hosts! I’m very glad you’re there for me and others.



Gisteren ben ik met Victor bij Viore binnengestapt. Carien had mij al weken geleden getipt en van het ziekenhuis had ik ook een mooie kaart van Viore gekregen. Viore is een inloopcentrum voor mensen met kanker. Het ligt op het terrein van het ziekenhuis, verscholen tussen de laatste bomen en een parkeerplaats. Eerst konden we het ook niet vinden.

Eenmaal binnen werden we zeer hartelijk en gastvrij ontvangen door de gastvrouwen. We werden verwend met een heerlijk kopje thee en water, ik kon mijn verhaal kwijt en we kregen een rondleiding. Het was eerst een laboratorium maar met hulp van vele vrijwilligers en sponsors is het omgetoverd tot een prachtige, huiselijke plek. Een mooie huiskamer met keuken, een yoga ruimte, een sportzaaltje en zelfs een beauty ruimte. Wat wil een mens nog meer?

Vandaag ben ik teruggeweest voor de inloop sport activiteit. Een zeer ervaren fysiotherapeute begeleidt wie dat wil op diverse apparaten. Sinds het hardlopen met Flo niet zo handig is (Flo heeft meestal geen zin) leek het mij een goede manier om fit te blijven. En dat is het ook. Twee ervaren sportieve dames stonden al klaar en waren volop aan het trainen. A en L zagen er super getrained uit. Maar toen ik uitleg kreeg op de krachtmachine kon ik nog geen 5 kg trekken met mijn armen. Enig excuus dat ik heb is dat ik echt nooit wat met mijn armen doe, maar daar gaat nu wat aan gebeuren. Met hulp van Ineke, de fysiotherapeute ga ik nu elke dinsdagmiddag aan de slag. Gelukkig kon ik toch goed meekomen op de loopband, fiets en roeimachine.

Na afloop lekker bijgekomen, en toen begonnen de stortregens. L was komen fietsen uit Blaricum en moest nu terug door de regen. Zij had een ongelofelijk verhaal over een mislukte borst reconstructie. Heel naar om mee te maken, maar zij is ongelofelijk dapper. En A ook. Zij heeft uitzaaiingen in hoofd en buik, nadat ze bijna genezen was. Heel erg om dat mee te maken. Gelukkig heb ik nu twee hele fijne trainingspartners waar je ook mee kan lachen. Een hele fijne plek, Viore. Laat het iedereen weten, open van 11-16 in de vakantie, en daarna van 10-18. Dank je wel Viore en alle vrijwilligers en sponsors! Ik ben er erg blij mee!



Several friends gave me a very good tip: make sure you’re fit before you go into surgery. It speeds the recovery process. Also taking in additional vitamins and protein should help. Since I mostly eat vegetarian I decided some supplements might help. So last Thursday I started to search the internet for supplements. A strange world appears: mostly sites for (presumably) young men advertising instant muscles if you use their protein powder enriched with creatin. Well, that certainly did not appeal to me. When I added the word women to my search, different diet sites popped up. Apparently you can buy all sorts of flavored protein powder, mostly intended for weight loss. Since I don’t want to lose any weight (I’m down t0 52 kilo’s from 56), that just wouldn’t do either.

Finally I found a great natural health food store online where I could order soy protein, soy milk (to make my shakes). To add in some vitamins I also ordered natural Acai powder and Goji fruit powder. Never tried it before but they are known as wonder foods due to their high vitamin content. Add in some chia seeds and we’re ready to go. While I was at it I ordered some nice herbal teas and mascara (ran out). Made a smoothie yesterday and today. The powders taste a bit funny so I added in a lot of strawberrries and some banana. Hope this works. Any tips will be much appreciated!

Then, as for feeling fit: I feel I’m out of condition. Last week I started rowing on our concept2, just 2 km for starters. Today I went for a run (6 km), but had to stop to catch my breath several times. I had to take a long nap this afternoon, I was really tired. I never take naps so this was strange for me. I guess I need it now.