I have not written on my blog in ages. I have many reasons for this, my fear of revealing too much personal information (not my own but of the people I love), not knowing what to say, protecting my professional career by not revealing too much about my illness. But there is one reason above all other why I have not written on my blog.
I don’t feel sick.
And I don’t want to be reminded I am a cancer patient.
When I reflect on the past few years, a few emotions float by. Losing my father has had a bigger impact on me than I dare to admit. But the joy of spending (a lot of) time with my niece and nephew has given me a new lease on life, so to speak. I really enjoy spending time with them and seeing the world through their eyes. At the same time, I have yet again worked too hard these past few years. I think it is my father’s work ethic which drives me to do my very best.
In september 2021, a neighbor passed away after a short but intense illness. She had colon cancer and I walked her dog each night for just one week when I found her at home and she collapsed. I called Victor and he called the ambulance. A week later she passed away. In a way it was a blessing that her pain did not last longer. But it made me realize how surreal it is that I am still here, living 10+ years with metastatic breast cancer, and still in relatively good health.
In November 2020 my oncologist changed my medication to Palbociclib with Fulvestrant, after it was clear that the Tamoxifen had stopped working. Palbociclib is a CDK4/6 inhibitor which is short for a cyclo-dependent kinases 4 and 6. This medicine blocks the CDK4/6 receptors on the cell (my oncologist showed me a great diagram). He gave an impressive public lecture.
I’ve been doing well on the Palbociclib- going strong for 2,5 years now.
Last September, my cousin Ineke passed away after living with triple negative breast cancer which had spread to her lungs. And it really hit me hard. I took her to the same hospital where I am treated, just days after my 53rd birthday. She had a CT scan but it was clear things were awry. She was asked to stay to see her oncologist. For weeks she had been trying to get an appointment to no avail. That morning – on August 31st 2022 – we sat outside in the sun waiting for 11 am. I pushed Ineke in a wheelchair since she didn’t have enough oxygen to walk on her own.
Her oncologist was clear: she had weeks, maybe months, to live but no more than that. It was a death sentence, and there was nothing I or anyone could do. Her words were cold as ice. A chill came over me, although the day was warm.
Ineke was strong, brave and alert, asking about options but there were none. I have never felt so defeated before. As we drove back to her new house she called her husband, children and her parents with the terrible news. She and her husband had just moved into their new house the day before. As things turned out, she would be in the hospital for a few days and then returned to spend her last days at home. A week after receiving the news she passed away. She was only 57 years old.
It’s still a painful memory for me. I suffer from survivor’s guilt: why should I be here when so many of my friends pass away? In December Ellen K passed away, someone I respect deeply and who has been a patient advocate for BVN and metastatic breast cancer patients like myself and Ineke for so many (30+) years. In March of this year we said goodbye to yet another patient advocate – Anouk – who was just 46 years old and also a member of our expert panel for the Dutch Breast Cancer Association. It is a tough act to follow.
As I reflect on these strong women I feel blessed to be able to do things that enrich my life. It is only possible because of new medication and the tireless advocacy of women who care. At the same time, I feel my energy fading a bit. It is time for me to focus on what really matters: my own voice and my life. Thanks for everyone’s support. Much love! Sheila
5 Replies to “Fear not”
Ik weet hoe moeilijk het was voor jou Shiel om hier over te schrijven, ik vind het heel knap van jou.
Dank je Nancy! Daarom heeft het ook zo lang geduurd. Maar gelukkig heb ik ook heel veel leuke dingen gedaan en meegemaakt, voor de volgende post.
Het lijkt me heel moeilijk om zoveel sterfgevallen in je omgeving te hebben.
Toch voor mij heel fijn om te lezen dat medicatie bij jou nu nog goed werkt
Dank je Wendy!
Thanks for your moving blog. Losing your loved ones is heavy Sheila, take time in your life for that.
I briefly shared some moments with Ellen K.
She always impressed me as a person and true her work for mbc by sharing what she had learnt.
I try to balance my life by limiting the time on to much thinking or reading about mbc…it seems almost natural that i do it anyway on a daily basis every day i.. always would like to no more about new medications or research..and sharing this with others..it is okay but i also need much much spare time for work/writing/poetry and trying to be..to feel like a normal person…
Good for you that the palbociclib is working so good.
I am on abemaciclib and fulvastrant. I am in my 4e year now it is working very good for me. But lately the side effects are heavy so we are lowering the dosis now wich feels better…and i am wondering if there is research done in case woman and men are for a long time on this medication..
I hope i find out. May i ask you wich goals the dutch breast association has? Is it the same as the BOOG groep?
I like the words fear not..my own voice..and life.
Wishing you good times!