So there’s a whole thing going on with Will Smith slapping Chris Rock at the Oscars for making fun of his wife’s hair. Jada Pinkett Smith has alopecia, which is something that one of my oldest friends suffers from as well. Hair can fall out due to a multitude of reasons, from autoimmune diseases to genetics, traction, poor nutrition and stress. But I’m not here to talk about Jada Pinkett Smith and her alopecia, or even about my friend’s journey with alopecia: I’m here to talk about cancer related alopecia.
The very first thing my doctor told me when she came to my hospital room to talk about treatments was that I’d lose my hair. I was on oxygen at the time because the tumour in my mediastinum (that the middle bit of your body, where your most important veins go, right up against the heart and lungs) was so large it was restricting my lungs enough to make me need oxygen to stay alive. At that point I had barely been sleeping in days, I had barely been eating, the main thing that I was doing was inhaling and exhaling, fighting for each breath. I had been waiting all day for a hematologist-oncologist (that’s a hematologist, a blood doctor, who specializes in blood cancers, which is what I had – Hodgkin’s Lymphoma) to take up my case and start taking care of me. I was very happy that the doctor that I wanted took up my case despite her already heavy caseload: she was kind and brilliant, and that’s not a common combination. She came in to my room with the paperwork for the chemo treatments (you have to give consent to getting poison pumped into your system, as chemo is basically poison in a dose that is meant to kill the cancer but leave you alive).
And the first thing she told me was that she was sorry, but that I was going to lose my hair.
I had read up about the side effects of the treatment that I was about to go through (ABVD chemotherapy), and I was afraid for my heart, my lungs, nausea, getting a chemical burn during treatment, and neuropathy. The last thing on my mind, the last thing I was worried about was my hair. The mouth sores seemed more scary.
The hair loss theme returned during my first meeting with the cancer centre’s social worker. An efficient yet caring battle-axe of a lady she told that from her experience ABVD patients didn’t lose all of their hair, they just lost most of it. She was looking at my head at the time, and it was before my 2nd treatment, so I still had all of my hair. My doctor had told me that the hair-loss happens after the 2nd treatment, and she was, of course, 100% correct.
Then there were the women in the closed cancer Facebook groups. I had joined a few, one for Lymphoma patients, one for young adults with cancer. They were a source of information and camaraderie, and a good amount of gallows humour. One of the women in the group, a new member like me, said that she would lose her mind if she lost her hair and asked if there’s a way to prevent it. Another asked about wigs and young children: is there a way to have the wig attached so that they can’t pull it off.
I thought that they were all being a bit silly. Yes, I know, that’s unkind and insensitive and I’d learn better with time, but I’m being honest here. I was literally fighting for my breath before the treatments, and they allowed me to breath. The side effects were far from being a walk in the park, but losing your hair didn’t hurt (I was wrong), and was just a superficial change (I was wrong), and a temporary one, so why focus on that and not on more serious side effects? (I was clueless).