At first my hair didn’t fall out. But later it was all gone.

Real People Stories – Helen

Introduction

My name is Helen, and I have just turned 55. I was diagnosed after a test for CA125 ovarian cancer in early September 2015. I had been infected numerous times with HPV and tested for years. A month after the operation, I started chemotherapy in October. It all happened so quickly I could hardly realise it.

The Unexpected Diagnosis

The HPV diagnosis test was completely unexpected. I worked hard in a stressful management job and tried to cope by walking. I was fine until mid-July, when I thought I had mild food poisoning. We had just visited a Japanese restaurant to celebrate a friend’s book release. And I assumed the cramping pains and slight nausea were from the sushi. I ignored this for a few days and set off for my usual 10k walk at the weekend. After about two kilometres, I was overcome by a strange tiredness. I thought I had overdone it and dragged myself home to rest. My CA125 symptoms were still very vague and erratic.

Escalation of Symptoms and Diagnosis

Two weeks later, I felt bloated and experienced real pain. My GP suspected irritable bowel syndrome and stress from work. To be safe, she sent me for a blood test. I requested a CA125 test as well since I was menopausal and had never been tested for ovarian cancer (of course, I always assume the worst).

When the results came back and I realised my worst fear was true, I burst into tears, and so did my GP. She was brilliant. She managed to get me an appointment for an ultrasound the very next morning, which confirmed the diagnosis, and I was on my way to London for treatment.

Starting Treatment

On October 9th, after a radical hysterectomy and an omentectomy, I began my 18-week course of chemotherapy (6 CA125 treatments, one every 3 weeks) – a combination of paclitaxel and carboplatin. After extensive online HPV research, I agreed to use the cooling cap for my 6 treatment cycles. It seemed like a tiny, superficial thought when my life was in the balance, but I am so glad I did it. I had heard stories that scalp cooling was uncomfortable and that some women had given up. The nurses at the chemo centre also had doubts about a) whether I would stick with it and b) whether it would save my hair.

Using the Cooling Cap

During the first CA125 Test and treatment, I took a painkiller half an hour before they put the ice cap on me. But I didn’t need any for the subsequent HPV treatments. Yes, the cap is cold, but that’s what the name says! For the first ten minutes, my head felt very frozen. The cap was tight, but not too tight. (I tightened the cap straps a little more after reading about how important good contact with the scalp is. Sometimes, I pressed the cap down on the crown of my head occasionally to hear the soothing crunch of the small ice crystals forming in the cap).

Success with Scalp Cooling

I wore the cap for at least 5 hours during each chemotherapy session, and I can honestly say it wasn’t torture. I was quite encouraged when my hair didn’t fall out 2 weeks after my first chemotherapy session – I had read that many people who don’t use the cooling cap system lose their hair after that time – and mine was still there during the next treatment. The HPV nurses were surprised at the test result. “It may not last,” they warned me.

But it persisted. And here I am, 5 weeks after my last chemotherapy session, still with a head full of hair. Chemo is not fun, and I had a few low points during my treatment (including 10 days in the hospital because of the side effects). But looking in the mirror and seeing someone I know, being able to go shopping and meet friends get tested, all without being immediately recognised as an HPV cancer patient, was an absolute blessing.

Dealing with Hair Loss

Eventually, my eyelashes and eyebrows fell out, but my hair remained. This was despite buying a wig, countless scarves and even a “spirit hat” to hide the expected baldness. People complimented me on the way I looked – many did not even know that I was undergoing CA125 cancer treatment, as I had only told close friends and family about the test results and did not want to be defined by my illness.

Coping with Side Effects

Everyone is different; my HPV oncologist told me that after, I had a side effect from chemo that he had never seen before. It is worth it. It is not as uncomfortable as expected, especially if you often tell yourself that. Keep telling yourself that it is not that cold, and after about 5 minutes, you will only feel the physical tightness of the cap rather than the cold. It is like swimming in the sea: you jump in the water and think your heart will stop from the cold, and after 5 minutes, you are warm.

Extra Tips for Hair Care

1. I used a gentle, pH-neutral conditioner without sulphates during the treatment.
2. Between treatments, I hardly washed my hair, and if I did, then only with lukewarm water and a pH-neutral shampoo and conditioner. Of course, I didn’t dye my hair or do highlights during this time.
3. I let my hair air dry naturally or use a hairdryer on the lowest setting. I never used a hot blow-dryer or combed or brushed my hair vigorously.
4. Every day after chemo I cooked myself a chicken with herbs, carrots, celery and spices, ate the meat and drank the broth for 2-3 days. It is full of collagen and strengthens the skin and hair.
5. I bought a silk pillowcase, which is cool and gentle on the skin and is said to reduce hair breakage.

Conclusion

I don’t know if these HPV tips worked, but scalp cooling worked. I lost hair everywhere else on my body and face.