Emma: If only…

Five years after FEC-T

Five years after FEC-T

Diagnosed with breast cancer in 2010, I put myself completely in the hands of the excellent UK NHS care. I was treated with kindness and support and was completely reassured about all aspects of my treatment. I only have praise and gratitude for the specialist nurses, the surgeons, the oncologists and the many others involved in my treatment and care.

Five years on I am well and reconstructed and getting on with life.

If only I had hair I could put the cancer behind me and get back to being me.

In the first year post FEC-T chemo I waited patiently, I took photos every week to convince myself it was growing. In the second year I invested in supplements, lotions and some potions – nothing more grew. In the third year I tried to get the medical profession to recognise that chemo had caused this only to be told it was genetic (as my grandfather had gone bald at 75!). Four years on I found I still felt the need to tell people I was wearing a wig – in the vain hope that I soon wouldn’t be.

It’s five years since I had hair now and I’m resigned to a life of wigs, insecurity and guilt. Guilt, as I know it shouldn’t matter. I’m alive. I’m fit, I’m well. But it so does matter.

Family and friends love me in the wig and without the wig. But I still cry when I have to explain it to a stranger. I put my wig on to open the door to the postman, I wrench it angrily from my head once I’m in the car heading home from work.

Without the wig I’m still a cancer victim, with the wig I’m not me.

It would have been so much better to have known that this was a possibility. I’d probably have still accepted the recommended treatment but at least I’d have been spared the years of not knowing and searching for an explanation and cure.

by Emma (England)

 

 

 

 

 

 

8 thoughts on “Emma: If only…

  1. Seven years after chemo, life is just not the same. I was told I could go back to normal life. After seven years, there may be a few minutes when I forget my pain. Something in me is dead, along with my hair follicles. It can’t be revived by drawing on eyebrows, or wigs. Standing in front of the mirror, I know I am bald. I know without the wig I look ten years older. I just can’t change this truth.

    Jayashree (India)

  2. I have been waiting ten years now! Looking in the mirror is still painful when you see a cancer sufferer staring back. Hardly any eyebrows grew back and less than half my lashes.

  3. I’ll never understand how this has been going on for 10+ years and we are STILL not being warned of this horrible side effect. I was 47 and single when I lost my hair to Taxotere. My Oncologist at Northwestern in Chicago PROMISED me it would come back ‘thicker than before” When it did not, she “played dumb’ and dropped me as a patient. I have been left to pick up the pieces on my own. I have been wearing hats for 4 years. Sadly, there were alternative drugs I could have had, but they were not offered to me. After having EVERY female part of my body removed, including my estrogen, not getting my hair back almost proved too much to live with. When will the doctors take some accountability and tell us the truth?? I have met girls in their 20’s that were left permanently bald. There is nothing we can do to get our hair back. And mostly I have to remind people that we are NOT cured. We are just bald and still have a 30% chance of the cancer returning. While we should be out living the rest of our lives to the fullest, most of us hardly feel comfortable enough to leave the house. I feel robbed of whatever ‘normal’ future I could of had.

  4. 3 and a half years since chemo and I still look like a cancer patient! I wear wigs and hats to cover my head. Everyone complements me how nice my hair ( which is a wig) is but if they could see how different I look without it with that horrible thin fake like hair and bald on top.:( I still feel bitter about what chemo has left me and always will. There is a sadness that will always be there in my life because of my hair loss.

    Karen (Canada)

  5. Medical field which knows what hair loss during treatment means to a cancer patient , spends time and effort in counselling and preparing a patient for chemo, behaves so dead to the same hair loss issue after treatment. In my opinion permanent allopiecia is worse. there is no getting back to normal life. It hurts every day.

    Jayashree (India)

  6. I was treated in Hungary, in 2010 March-July.
    Nobody told me about this radical side effect of TEC (including Taxotere). In the first 3 years I was running around to find out what was happening with my hair when I finaly found this group. It was shocking to finally learn the sad reality about this permanent side effect of Taxotere, but I find cool girls here who support me in hard times. They are still hard times but we try to find out how to handle them. It will be an ongoing process in rest in my life.

    Marta (Hungary)

  7. I am getting close to a decade past being treated with Taxotere (nine years now.) My oncologist was not anxious to prescribe any extremely aggressive therapy for a small tumor, I was told, so I wasn’t too worried about agreeing to it. Then I had lots of nasty side effects, such as severe joint pain and losing all my nails. People blog about Taxotere SEs all the time on cancer websites, I have since discovered. The worst side effect for me was that only a little of my hair has grown back. People blog about that too. I cried and cried when my shiny scalp confronted me in the mirror day after day, and now I will just have to live with it for the rest of my life. As I reflect on my experience with cancer treatment, it seemed like an “extremely aggressive therapy” to me. I will never know if I would have survived anyway, and more intact, if I had not agreed to taking Taxotere.

    Kathy (Canada)

  8. I completely agree that without a wig we are still cancer victims and with a wig we are not ourselves. Though this hair loss has been devastating and I felt so alone until I found this group.

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