Hello my name is Shirley. I co-founded a global support group for breast cancer patients after they were left, unexpectedly, permanently disfigured by their chemotherapy. I’m trying to raise funds to help support some of these women in their legal fight, against Big Pharma, who are trying to get some justice and hold the company responsible for this concealed side-effect, to account. For a woman to live with male pattern baldness is a very cruel reminder of cancer, every second of every day, for herself and family when there were equally as effective drugs available without this devastating result.
Thousand of patients = thousands of families affected. It's real, it's happening and it must be stopped!
We all hate this cruel and indiscriminate disease.
But what happens to the breast cancer patient at the end of their gruelling treatment when they discover something’s gone horribly wrong? Why are women not being informed? Given a choice? They’re crying out for emotional support, but nobody’s interested. What about life after cancer? Quality of life? As human beings, not to mention patient's , don't we all deserve to know the truth about how we will have to live the rest of our lives?
Too many women are going through difficult chemotherapy only to find themselves unexpectedly permanently disfigured when they should be getting on with the rest of their lives. I’m talking about permanent hair loss to thousands of women. To describe it more accurately, it’s male pattern baldness…on a woman. Not nice for a man, but for a woman, it’s unbearable. Among many other difficulties, it’s a constant, daily reminder of the cancer diagnosis and traumatising treatment. Why weren’t we warned?
Thirteen years ago, several months after I’d finished my treatment, my oncologist spoke to the drug manufacturer and then broke the news to me that my hair would never grow back. I went into denial. Nobody told me this could happen. So many questions went unanswered. I felt like a freak and looked like an old man. My mental health took a nose-dive.
I was soon tapping away on the keyboard and found another lady suffering the same side-effect. I’ll never forget the relief of finding Pam, from Oklahoma.
We decided to look for others and form a support group.
And so, the search began, with immediate success. This was the birth of ‘Taxotears’.
Since then, I’ve dedicated my life to raising awareness.
The group went from strength to strength, gaining members from all over the world. Each time a new lady wanted to join, although it made us sad that another woman was having to go through this, it was good to know they now had somewhere to go. It was our safe place where we wouldn’t be judged and accused of not being grateful for our treatment, or told ‘you’re alive’ or ‘just stick a wig on’. We always struggled with this issue. Of course, we fully understood people’s feelings, but it was never about that. We were all so very happy to be alive and kicking, but we wanted to give help to others suffering the same side-effect and to raise awareness that this could happen to you, your wife, sister or daughter. We are every woman.
Over the years, we’ve had our ups and downs, as you’d expect, but our solidarity has never wavered! We all held on tight to each other through the depression, anger, tears and, of course, the sad passing of some of our ‘Taxotears’ ladies. It always hits us hard when we lose a member, and that number includes our lovely Pam who co-founded the group with me.
We always believed that one day this would end up in the courts. That day has finally arrived.
Hopefully there will soon be positive closure for the thousands of ladies involved in court cases in the USA. A good outcome in America will also give a huge morale boost to the ladies in other countries.
Why do we need donations?
Our members live in the USA, UK, Canada, Europe and many other countries. I’m British but live in France. Some of the ‘Taxotears’ from the UK would love the chance to attend the bellwether trials in Louisiana in 2020. Brave ladies there are taking on the might of Big Pharma and need all the emotional support they can get. I’m sure they must feel like lambs to the slaughter. What better way to support them than several of us filling the public gallery displaying our wigless heads?
We are fighting for every woman who is faced with dealing with breast cancer treatment to be told the truth. To be told of all options available including other equally effective drugs and the cold cap, which is a device that can help prevent temporary and permanent chemotherapy-induced alopecia. Women should be given the statistics of the various studies carried out on this side-effect, but most importantly, women should give their informed consent, which they can’t do if they are not told the facts. That’s your wife, your mother, your sister and your daughter. We are every woman.
Please help us support these women.
How will these funds be spent?
All funds will be spent on airfares and basic accommodation to help as many support group members get to the States for the duration of the trials.
Any funds left over will be donated to Bright Tights Charity, Channel Isles.
- Julia Ciliberti
- janette ludgate