In November 2013 I was a busy, fit, happy, 36-year-old mum to three small children aged 6, 4 and 2, and was looking forward to another hectic, fun-filled Christmas. It turned out to be hectic but far from fun-filled. I found a lump in my left breast in the shower one morning and by 12th December I'd had a diagnosis of stage II ER+ breast cancer and a full mastectomy.
Recovery from the operation was slow and painful. I dreaded the next part of my treatment - chemotherapy at The Christie Hospital in Manchester; somewhere so famous and somewhere I never believed would become so familiar. I was full of fear of the unknown and lay awake at night contemplating the effects of treatment and the loss of all my hair. How would I explain it to the children? I cut my hair short to lessen the blow. I bought a wig. I asked my sister in law to shave my head when the time came. These were all difficult things to do when I was already going through so much physically and mentally.
During a pre-chemo appointment the oncologist made me aware of the Paxman Scalp Cooling System or 'cold cap'. At first I was hesitant as, being somewhat of a perfectionist, I was concerned that the results might be patchy at best. I wondered if no hair was better than bad hair. It might need a lot of titivating, possibly making me feel self conscious and making people wonder what was wrong with me. At least with a bald head you know where you are, or I could wear the wig if I was brave enough. But as the day of my first treatment session drew nearer, I just could not face the reality of all my hair falling out within a matter of days. I had to give it a go.
The first of six cycles of FEC-T chemotherapy began in February 2014. Using the cold cap is simple really. It is just a rubbery cap for the coolant to flow through and a second tight fitting neoprene cap to hold it firmly in place. A tube connects the cap to the machine that supplies the coolant. Being honest, the first session was tough - some teeth gritting and determination were definitely required. But as I always say, most things worth doing in life aren't easy. After about half an hour I acclimatised slightly and it became much more bearable. Have two paracetamol before you start, wear warm clothes and stay focused on why you're doing it.
The second session was much the same but by then I had no choice but to continue as I had lost little hair - it was working! By the third session I definitely acclimatised much more quickly and was quite comfortable once the initial shock of the cold had worn off after five minutes or so. I could chat to my husband and read a magazine to pass the time. The remainder of the sessions were very manageable.
My hair retention was fantastic. Some thinning did occur of course, but I bought some keratin hair fibres online which you sprinkle on (a bit like coloured talc) and this gave me a near-perfect head of hair. I was never self-conscious of it and never wore a wig or a headscarf! I was bridesmaid for my best friend exactly half way through chemo which was obviously a moment in the spotlight I'm not sure I could have enjoyed without my hair. Even now when we look at the photos I'm so glad that I just look like me on a fabulous, memorable day.
Going through chemotherapy is the ultimate endurance test. I'm a strong person and was determined to maintain as normal a life as possible. Of course I had support from wonderful family and friends, but I did the school run most of the time and socialised as much as I could. Keeping my hair was an enormous part of maintaining my self image and confidence and, equally as importantly, in shielding those around me from the brutality of cancer treatment. You definitely get less sympathy when you look normal which is just the way I wanted it! I appreciated that I could go about my daily life and no one would know what I was going through unless I wanted them to. I used to think of it as 'my secret cancer' and I would not let it define me.
Once my treatment ended, having my hair enabled me to move on more swiftly, rather than continuing to look like a 'cancer victim' for months and months while waiting for it to grow back. I was recently on a night out with a friend who was about two months post her last chemo session and had not been offered the use of a cold cap - she lives in Northern Ireland where sadly the system is, as yet, not in use. She still has barely any hair and so was wearing a headscarf. A man in a bar got up and offered her his seat. A kind gesture but inside she was probably screaming "there's nothing wrong with me now, I just want to move on!”. Sadly, waiting for her hair to grow back is yet another hurdle in the endurance test. The Paxman system helped me avoid that hurdle altogether.
I am not a particularly vain person but it is amazing how emotionally beneficial looking good is when times are tough. It helps maintain some feeling of continuity and control at a terrifying and confusing time, when nothing seems safe or certain.
If you are reading this and are considering scalp cooling during your chemotherapy treatment, please do give it a go. It might just make one of the most difficult experiences in your life a little easier.
HINTS & TIPS
1) Cut your hair short before you start! I'm convinced that if the cold can get really close to the scalp it must be a good thing. Shorter hair can also be styled more easily to conceal any areas that have thinned a little.
2) Comb through plenty of gentle conditioner with a plastic wide tooth comb.
3) Work with your nurse to ensure your cap covers your hairline as best as possible. The cap may not fully cover the nape or ‘sideburn’ area completely. Remember your nurse can’t feel it so it's up to you to make sure your cap is a really snug fit.
4.) Shampoo hair with a gentle, patting motion. I would recommend Nioxin 2 shampoo & conditioner which is for thinning hair and is brilliant.