Last month, Community member Renita (RMD), shared her story in this blog, of being diagnosed with invasive multifocal ductal and lobular breast cancer. She wrote about the challenges of treatment and how the Macmillan Online Community gave her support, hope and comfort when she needed it most. In this blog, Renita shares her experience of losing her hair during treatment, hoping to help others going through the same thing feel less alone.
I thought being diagnosed with multifocal invasive ductal and lobular breast cancer was traumatic. Don't get me wrong, it was, very much so, as was the mastectomy that followed and the various side effects of chemotherapy. Each one seemingly worse than the last.
Despite having worn the cold cap during my chemotherapy sessions, enduring the freezing scalp and the excruciating headaches, my hair started to fall out. This was most traumatic of all, more so than the fatigue, the nausea, the pain, the sleeplessness, the mouth ulcers, the loss of taste and sensation in my hands and feet, the loss of memory and concentration and focus.
“Despite having worn the cold cap during my chemotherapy sessions, enduring the freezing scalp and the excruciating headaches, my hair started to fall out.”
I had shoulder length hair, and it had always been thin. When I started to lose it, I was amazed by how much of it there was. There would be clumps on my pillow when I woke up in the morning. I would run my hand through my hair without thinking and come away with a fistful of it in my hands. The drain in the bathroom was clogged with it. It was everywhere.
Even now, several months on, I still find strands of my old hair lodged between the sofa cushions, clinging to clothes I had worn during that time even though they’ve been washed.
It was traumatic looking in the mirror and seeing great big bald patches where hair used to be.
When they told me that losing my hair would be one of the side effects of chemo, I decided that I would shave it all off once it started to go. But when it did start happening, I couldn't bear to do so.
One day I was on the way to my chemo session, and I caught a glimpse of myself. I was shocked and embarrassed. There was hardly any hair on top of my head, and only a few straggly strands clinging to the sides. In that moment, I decided I would shave it all off, with the help of my husband.
“Who was I now? I did not know the stranger looking back at me from the mirror.”
That was difficult, and so was staring at this gaunt bald woman who bore no resemblance to the person I recognised as me. When my eyebrows and eyelashes fell off too, that was even more difficult. All the hair in my nose and ears fell off too, and every time I went out, my nose ran and my ears hurt.
I felt as if the cancer had stripped me of my femininity. I had lost one breast and all my hair on my head and face. I was having injections to induce menopause and taking hormone blockers. Was I even a woman anymore? Who was I now? I did not know the stranger looking back at me from the mirror.
I finished chemotherapy just before Christmas. On Christmas Day, even though I felt horrid due to a severe reaction to the second set of chemo drugs, I made an effort for the sake of my family. I painted on eyebrows and wore a wig. I felt more like the old me for a few hours. Afterwards, I had a severe reaction to the makeup as my skin had become very sensitive.
So I stopped making an effort. I felt like, ‘What was the point?’
“It was wonderful to have a community which gave practical advice, which knew exactly what I was dealing with and where I could discuss how I felt.”
When feeling at my lowest, I turned to the Macmillan Online Community who were, as ever, my lifeline. Others who had been through it promised me that the hair would come back and that I would feel like myself again. Not the old me but a different version.
They gave me tips and advice on how to cope in the meantime. They showed me how to take care of my scalp, and what pillow covers helped when sleeping. They shared how they themselves had faced this trial. We had discussions on whether wigs, scarves, or hats were best. It was wonderful to have a community which gave practical advice, which knew exactly what I was dealing with and where I could discuss how I felt and they would get it. The most wonderful thing was that we were even able to laugh and joke about it at times.
Thanks to the advice I received in the forums, I attended a Macmillan scarf tying workshop at my hospital. It was run by women who had been through hair loss themselves, and hearing their stories, seeing how much hair they had now, gave me hope. They were so gentle and kind, and I came away hopeful and armed with tips.
“…the hair would come back and that I would feel like myself again. Not the old me but a different version.”
I learned through the community to look for the positives and the silver lining even during the darkest of times. In this case, the silver lining was that I had also lost hair under my arms and on my legs, so no shaving yay. One positive among all the bad. I clung to it.
Through the Macmillan Community, I found hope, and in time, just as they promised, I found me again. A newer, stronger, different me. I have lost a lot to cancer, but I have gained too. A community of people who are stronger for having come through the same experiences.
I learned that I could face whatever life threw at me together with the generous, kind souls of the Macmillan Online Community, who gave their time even when they themselves were facing so much. Now I do the same. I like to make sure I am there for people who are facing this, to let them know they are not alone. My hair has started to grow back. Thanks to the advice of the fellow Online Community members, I am gentle with it, using sulphate-free hair products and moisturising and massaging my hair and scalp daily. My new hair has started to grow back. It's different. Thicker. Stronger. Like I am.
We would like to thank Renita (RMD) for sharing her personal experiences of hair loss. Have you also experienced hair loss during cancer treatment? Comment below to share your experience and leave Renita a supportive message.
If like Renita, you are affected by breast cancer, worried about chemotherapy side effects and hair loss, the following links may help.
