In the few days ahead of the formal diagnosis, facing the possibility it could be cancer, all I could focus on was the fact I did not want to lose my hair. Incorrectly I assumed cancer means chemo which makes hair loss inevitable. I have since learnt is not always the case. For one, chemo doesn’t form part of the treatment plan for every cancer patient and secondly, only some of the many different chemo drugs have hair loss as a side effect and even then some people do not lose their hair completely.
As it happened I had a hair appointment the day before I was due to meet with the consultant for the diagnosis. I spent the majority of those three hours in the hairdressers sensing it was quite probably the last time I would be having my hair highlighted for some time to come.
Why did the prospect of losing my hair fill me with dread? Well I’d never had short hair and as someone whose hair had largely been unchanged for 15+ years (aside from being various shades of blonde) I’d come to feel my hair was part of what defined me. Once surgery was confirmed as the first stage in my treatment plan I was made aware that chemo may follow; and if it did then one of the side effects would likely be hair loss. This became real when the surgery revealed the cancer had started to spread and chemo would therefore follow.
On visiting the oncology suite prior to my first chemo cycle, one of the nurses talked me through the cold cap option (a device that freezes your hair follicles whilst having the chemo administered, in an attempt to stop the chemo drug destroying the hair follicle which is what results in the hair loss). The cold cap didn’t sound particularly pleasant (and no one pretended it was), but nonetheless I thought I may as well give it a go once I was assured it wasn’t proven to interfere with the effectiveness of the chemo. In order to reduce the chances of losing my hair I’d been advised to ensure I treated my hair with care. I vowed to stop using the straighteners immediately which whilst it sounds vain, had a big impact on how I felt about my appearance.
The nurse assured me I could change my mind about the cold cap at any point if I couldn’t tolerate it being on. In actual fact the cold cap wasn’t as bad as I feared. As a nurse had said, “get through the initial 15 minutes and you’re OK”. After the brain freeze set in I was almost numb to the cold and with the benefit of an electric blanket I didn’t feel too cold. Trips to the toilet were a bit of a bind during treatment. Not only did it entail dragging which ever fluid/drug was being administered on a stand but I also had to be detached from the refrigeration unit.
I ended up using the cold cap for the first two chemo cycles. It sure didn’t look great - a basin type helmet, secured with a neoprene overlay and chin strap attached to a refrigeration unit. Despite there being multiple sized cold caps none seemed to be a perfect fit for my head shape – if the cap’s not in contact with the scalp then the effectiveness of the cold cap is compromised. The cold cap had to be worn over damp hair prior to/during/after one of my three drugs being administered – the nurses worked out a way to administer my drugs so that using the cold cap didn’t require me to stay longer than I would have needed to anyway. When the time came to remove the cold cap after my treatment I was slightly aghast to find my hair was actually frozen to the helmet and I had to wait a few minutes for it to defrost. I was completely self-conscious of the cold cap when friends would visit me in the hospital but I just kept telling myself needs must. In hindsight I wonder whether the cold cap would have been more effective for me if I’d have had my hair cut shorter before my chemo.
Five weeks into my chemo I noticed more hairs were coming out than normal when I ran my hand through my hair. As I started to express concern, friends tried to assure me that it was normal to lose up to 100+ hairs a day, but I knew this wasn’t normal for me and concluded the cold cap was unlikely to be effective for me. I started going out in the garden to run my hands through my hair, each time a handful of hair would come away but being outside meant it wasn’t quite as stark as seeing it mount up on the carpet. By my third cycle of chemo my hair had really thinned on the top, I accepted the hair loss at that point, even if using the cold cap meant I didn’t lose any more I could hardly go round with a bald patch on the top. My third cycle of chemo without the cold cap wasn’t nearly so bad, helped by the fact it was a couple of hours quicker than the first two visits as the drugs weren’t held up en route to the hospital and I was able to have one of the drugs administered at a faster rate.
On reflection I put off shaving my remaining hair for too long, I wore a woolly hat when out to disguise the balding area on top and started to wear a wig over what remained. I knew I needed to wait until I could emotionally face getting my head shaved and for me that time was the point at which I knew shaving it was the best option. After a couple of glasses of wine I let my sister-in-law do the deed. Looking at myself in the mirror for the first time was upsetting but also came as a relief. I felt a mess with straggly hair and it wasn’t easy concealing what hair I retained under my wig as the hairline of the wig didn’t align to mine and I had to wear a horrendous pop sock type affair under my wig in an attempt to conceal my own hair. For a long while after I’d continue to look twice when I caught sight of my bald head in a mirror.
I hadn’t appreciated quite how much hair helps keep the head warm, I particularly noticed the cold during the night and resisted wearing a woolly hat in bed most of the time! My scalp was really sensitive whilst I was losing my hair. When I first wore the wig over my own hair my scalp came up in red itchy blotches. I called the wig shop to see if it was possible I had an allergy. They advised I tried a different wig liner which I did. This eased the discomfort slightly but I think it was just down to the sensitivity of my scalp at that time. A few days after I’d shaved my hair the sensitivity eased off although I still found the stubble painful to lie on for a week or so.