Brushing my long, red hair, I glanced in the mirror. A healthy looking woman stared back. “It’ll be fine,” I told my reflection. I was on my way to hospital but I wasn’t worried. I’d been for a series of tests after noticing that my right breast felt a little hard. There wasn’t even a lump, but I’d casually mentioned it to my GP during a routine check-up, and just to be on the safe side he’d referred me for tests.
Now, two weeks later, after a mammogram, an ultrasound, and a biopsy, I was about to get the results. It was just going through the motions though, I told myself. I’d been thoroughly checked – if there was anything wrong I’d have heard by now.
“It’s breast cancer,” the doctor said after I’d sat down in his office. The news winded me. My brain was screaming: “I’m only 29. I don’t want to die!” I could hear the doctor still talking but his voice was coming from far away and I couldn’t take in much of what he said. In fact the only thing I can remember him saying was: “We’ve caught it early, so after surgery you won’t need chemotherapy, just radiotherapy.” That gave me a glimmer of hope.
I went home in a daze, stumbling through the next few weeks, until a month after the diagnosis I was wheeled to the operating theatre at Altnagelvin Hospital, County Derry, Northern Ireland, for a lumpectomy. The next day, sore and groggy, I was told a quarter of my breast had been removed. There had been a lump after all. The worst was over, or so I thought – until the oncologist came to see me.
She said she wanted me to have a course of chemotherapy. Although they were 99 per cent sure all the cancer had been surgically removed, and tests showed it wasn’t in my lymph nodes so hadn’t already spread, they wanted me to have chemo as a sort of ‘insurance’.
My immediate reaction was “No way!” I’d clung on to the thought that chemo wouldn’t be necessary. I’d read it could wreck a woman’s chances of having a baby, and I knew I wanted a family even though I was single at the time.
I hoped to eventually meet someone and have children... I also knew it could mean losing your hair. It may sound trivial, but my locks meant everything to me. While being a redhead had marked me out as different and I was teased for it as a child, I’d grown to love the colour. Being a redhead had become part of my personality. Hair is also associated with femininity, beauty and health. I was young, and couldn’t bear the thought of being bald, thin and unhealthy.
I didn’t want to look like a cancer ‘victim’. I was fighting cancer and wanted to look as strong as I felt. But eventually I realised that chemo would be a sensible precaution – it wasn’t worth risking my life by refusing – and so I started researching anything that could preserve my fertility and my hair.
Talking to doctors at the hospital I discovered I could have my eggs frozen at a clinic, and the National Health Service would pay the £4,000 (Dh23,000) bill. I was sedated while my eggs were extracted, so it didn’t hurt. I was grateful that no matter what happened, my eggs were frozen just in case I needed them in the future. Keeping my hair proved more of a challenge.
Overcoming obstacles
A nurse at my hospital knew about the Paxman Scalp Cooling system. This chills the hair follicles to such a degree that they can’t take up the chemotherapy. She said the cold reduces blood flow to the hair follicles, so the chemo can’t get to the hair root bulb where it can cause hair to fall out by almost strangling the hair shaft so the hair then breaks off.
She had seen it in action at a London hospital and knew it could be effective. That gave me hope. But first, I had to overcome two obstacles.
There wasn’t a single scalp-cooling system in Northern Ireland, where I live, and my oncologist was opposed to the idea. She said that if cooling prevented blood and the chemo from reaching the scalp, then that could allow cancer cells to get there. I argued that as my lymph was clear, I presumed that meant the chances of any cancer cells spreading were minimal, and so it was a risk I was prepared to take.
The nurse who knew of the system said she’d also heard that the UK breast cancer charity Walk the Walk sometimes helped with funding for people like me when the NHS refused to pay.
So I wrote to them asking for help. It took a few weeks, but finally, I got a phone call saying Paxman would rent a scalp-cooling system to my hospital for four months – the length of my chemo – and that Walk the Walk would pay for it. To me, it felt like winning the lottery.
I had just come back from travelling and was about to go to university. I didn’t have any savings or a job. So this really was a big deal. Before starting chemo I had my shoulderlength hair cut into a short bob – it would be easier to get into a scalp-cooling cap and lighter so less likely to stress my scalp follicles. I felt strange looking at my shorter hair in the mirror. I didn’t particularly like it but if it meant I could keep my hair it was worth it.
I threw a party for my 30th birthday a few days before starting chemotherapy.
Being surrounded by my friends and family boosted me, so I felt strong as I went into hospital for my first chemo session. I needed two sessions every three weeks, and a total of six sessions.
It was short but I’d been warned it would be hard. The scalp-cooling machine looked a bit like a vacuum cleaner with a pipe coming out attached to a special cap. I had to tuck all my hair into it, and wait while silicone in the cap was cooled.
It was painfully cold and I wondered if I’d made a terrible mistake, though after ten minutes my head went numb. I had to wear the cap for an hour before each chemo session, and for two hours afterwards. I went home feeling OK, but three days later I was unable to get out of bed, I was so exhausted and felt so sick. My body hair fell out immediately – I looked weird with no eyebrows or eyelashes, but thankfully, I didn’t lose any hair from my head. I was relieved – the scalp cooler was working.
But then, just a few days before my second chemo session my hair brush showed tell-tale signs of shedding. That unnerved me. Then I found hair on my pillow. It wasn’t just a few stray strands. It was clumps of it and fear pulsed through me. I couldn’t go bald, not after everything I’d been through. I began fearing that scalp-cooling wasn’t working, that I was merely prolonging the agony.
Then I realised I’d developed a bald round patch about the size of a tennis ball right on my crown. That was where the silicone cap didn’t fit snugly on my small head, leaving an air bubble at the top. So my hair and scalp weren’t being cooled there. That’s why the hair was coming out. Luckily I could easily disguise that patch by scraping my hair back into a wide hair band. I kept checking and the hair on the rest of my head was fine – the cap was working.
Empowering decision
Chemotherapy was hard. I was ill for a few days after each session, but seeing my red hair whenever I looked in the mirror made me smile. It wasn’t about being vain. It was a psychological crutch. A bald woman, or one with really sparse hair shouts “cancer”, meaning people instantly treat you differently, often reacting with pity. Keeping my hair empowered me, gave me some control, made me feel a survivor, not a victim and I’m sure that helped me stay positive.
Finishing treatment was a bit scary, as suddenly I wasn’t getting all the support, so I was grateful for check-ups to keep reassuring me all was well. Over the next few months, my hair grew thicker and longer, reminding me how far I’d come. I had annual checks and the cancer didn’t return. I’m 33 now and still need check-ups every year. I haven’t reached the five year “all clear” stage, but I have every hope that the cancer won’t return.
Weirdly I now feel cancer was almost a gift. Don’t get me wrong – it was an unbelievably horrible experience but it also made me determined to live life to the full, not take it for granted. I became more proactive, and I’ve put more into the last three years than I did in the previous 30. It made me feel strong, motivated and decisive, attributes I never realised I had!
The first thing I did after finishing treatment was sign up for a degree course to give myself something positive to focus on. I’ve just been awarded a First Class Honours Degree in Social Work, and I’m very proud of that. I’m also proud that the hospital where I was treated has now been donated 12 Paxman Scalp Cooling Systems by the Walk the Walk charity. I was the first one to use it, and the hospital realised they do work, and want to offer them to others having chemo.
Now I plan to help raise funds for Walk the Walk – I owe them more than I can ever put into words. It may seem vain and petty to want to hang on to your hair when your life could be at stake, but if you can look in the mirror and still look like yourself, I reckon that can make a world of difference to how you feel and react to the disease and the treatment. It worked for me.
