Blog - We Are Every Woman
What does this mean? We are every woman, we are your wife, your girlfriend, your mother, sister and daughter. So, if you are a man this is important for you too and you can find out how it might affect your life towards the end of this page. I'll be adding to this blog as more news comes out so please check back from time to time.
Who Am I?
My name is Shirley, a regular sixty-one year old woman. I'm a wife, mother and grandmother. I'm also the co-founder of a global support group. I write, enjoy gardening and I suffer from male pattern baldness. For a man that's bad enough but for a woman...it's soul destroying.
For the last twelve years I've dedicated my life to raising awareness about this 'concealed' side-effect of the chemotherapy drug Taxotere.
At the age of forty-five I was diagnosed with breast
cancer. Surgery, chemotherapy and radiotherapy
followed. I'll skip over all the yukky stuff.
After chemo finished I soon discovered that something was amiss.
My hair to be precise. It wasn't growing back so my oncologist phoned Sanofi Aventis, in Paris, and told them.
At this stage I still believed it would return and was just being a bit slow off the mark, plus I do like to be different! Anyway, he told me that after speaking with Sanofi, they said they were sorry it had happened but it can happen, albeit very rarely. They also said it would NEVER grow back.
My mental health went into free fall and my 'rare' disfigurement became a full time
I soon found another lady in the USA, Pam, who was suffering the same side-effect. We couldn't help but wonder that as we found each other so easily there must be more women out there waiting to be found. That's when we decided to look for them and form a support group. That was the birth of our safe place - we were the 'Taxotears'.
It quickly became a global support group that sadly increases , even today, by women who all believed they were the only ones. We were the freaks of chemo. We were part of a dirty little secret. We had to be suppressed and we our claims would be discredited and silenced. But we had each other.
My obsession reached a peak that I couldn't descend from, insomnia and paranoia took over my life. My doctor kept pleading with me to have anti-depressants but I refused saying that I wasn't depressed and I didn't want to take something that would make me like my devil's haircut! I was scared that if I took medication, I'd think it was OK to go out in public 'uncovered', when the only thing I was interested in 'uncovering' was this hidden adverse side-effect! I became hooked on sleeping pills that stopped working after a few years, it was impossible to sleep with them and without them. Trying to function on a daily normal level was no longer possible. I remember making sure our office window shutters, which overlooked the main road, we tightly closed at night in case someone from the drug company might try to shoot me while I was sitting at the PC.
During this time I did some bizarre things including creating a YouTube Video were I read a little ditty and at the end dropped my trousers and mooned into the camera. At the time I thought it was just me being me but thinking back, I realise it wasn't! It's hard to believe I made that video! But it goes to prove how the mind can spin out of control when depressed, obsessed and angry.
This downward spiral continued for seven years until one day, out of the blue, something happened which made me love myself. I had finally accepted it. Now, don't get me wrong, I wasn't blind. I would still look in the mirror and not like my reflection but I'd finally stopped fighting it. It was what it was.
The next thought was to write a memoir about my experience, hoping it would educate and help others in the same situation. So that's what I did. Ten months later it was available on Amazon. It wasn't easy to write because I had to revisit the dark place I had just managed to leave but I wanted to get this story out.
It needed to be told but always thinking that once the book was out, that would be the end of it. Life would move on.
I certainly wasn't expecting the response it brought!
The emails came in thick and fast from strangers who had bought it for
their wives or mothers suffering from the same side-effect. All of them saying they had been prescribed Taxotere and all of them thinking they were freaks.
Then the invitations started to arrive to take part in podcast interviews, to write articles, national newspapers covered it and the list went on. I was once again, sucked into the world of the devil's haircut.
Meanwhile, back at the support group new members carried on joining and of course the inevitable heartbreak when we lost members and that included Pam the lovely lady I co-founded the group with.
We always had faith that one day Sanofi would have to answer for their actions.
One morning I woke knowing it was the right time for me to leave the support group. I loved these ladies and our solidarity had never wavered, we had all supported each other on what's been a long and painful journey. I had given my all and felt I couldn't do anymore. That brings us to today.
Earlier this year I received a subpoena. Sanofi US had gone through the courts at the Hague to force me to appear in the civil court of Toulouse to answer questions. To be interrogated for the day.
Almost fourteen thousand women in the USA have now filed lawsuits for their life-changing disfigurement. It has been along time coming and I wish those brave ladies all the very best. I can only imagine the courage needed to go through with this. They are your wives, mothers, sisters and daughter of tomorrow. The women of tomorrow that won't be warned or told the truth about the very real possibility that this could happen to them and that there is another equally effective drug that doesn't have this problem! There is also a device called a cold cap or scalp cooling that can help minimise the risk of hair loss and I would love to see this used as standard practice -offered to all.Women should have the right to choose.
Sadly, because of the ongoing litigation in the US, the Support group is now not fit for purpose due to lawyers from both sides gaining access to the group. It's not fair that sufferers from this disfigurement have nowhere to go, they desperately need a safe place. So, I've been working on starting a new support group which will available, any day now, for everyone except US citizens, due to the powers of the lawyers it's easy to gain access. As normal procedure there will be strict vetting. This will safe-guard the members and give peace of mind to everyone.
Please don't think you are immune to this adverse side-effect because you are a man. Because men don't suffer from breast cancer as much as women, obviosly the numbers are smaller.
This could happen to your wife, mother, sister and daughter. Don't you think they deserve the right to be informed? Imagine this happening to a female member of your family. Having to change your way of life, forever, because your wife in unable to be the spontaneous person she was before. How will you cope with the years of her being depressed, her hating to see her own reflection not to mention how it intrudes into the bedroom! It affects sports too as well as EVERY aspect of your normal life including the unexpected ring of the door bell. Imagine the kids can't just walk in the house, from school, in case they have brought a friend home with them. To your wife, hearing the front door opening will send her into a blind panic.
If you would like to contribute to helping some of our European 'Taxotears' ladies attend one of the bellwether trials, in New Orleans, to fill the public gallery with wigless heads I have set up a Go fund Me campaign, here is the link to the Go Fund Me campaign. Thank you.
To watch my 30 min live video click here