Amanda.

Location: Manchester, UK

"Probably even more important for me, was that keeping my hair allowed me to recover my self esteem quicker after treatment finished. After a few weeks there was no sign of bold patches, within a month my hair felt strong enough to have highlights, wow, this definitely made me feel more human. "

My name is Amanda White, I’m 36 years old, I live in Didsbury, Manchester and I’m the Head of Rail at Transport for Greater Manchester.

Last year I was training hard to trek to Everest Base Camp in February 2018, I’d never felt as fit and healthy in my life, but in December 2017 I found a lump. It took me a week to be sure and tell my doctor, but when I did, a scan was arranged for 27th December, my 36th Birthday. As it turns out this would be one to remember, for all the wrong reasons.

Following the ultrasound and mammogram on the 27th I immediately had a biopsy, the prognosis was obvious but unconfirmed, I’d have to wait until the 2nd January for the formal results and likely treatment plan.

I had a triple-negative breast cancer. Associated with younger people, typically those with a BRCA gene fault, triple-negative is one of the most aggressive and difficult breast cancers to treat. My tumour was 15mm, stage one so thankfully caught early, but a grade 3 invasive Ductal Carcinoma in Situ (DCIS).

Treatment started immediately with fertility preservation, MRI and CT scans. Thankfully the scans confirmed the cancer had not spread and the egg freezing was a success, small blessings.

Chemotherapy followed shortly afterwards from the 1st February. I was incredibly fortunate to find myself living within a mile of one of the worlds best cancer hospitals, The Christie, indeed all of the south manchester hospitals gave me incredible care – Wythenshaw and St Marys.

I was terrified of Chemotherapy, my plan included nine weekly treatments of Carboplatin and Paclitaxel followed by three 3 weekly treatments of EC or the ‘red devil’, I just couldnt imagine being so ill for four and a half months.

I researched as much as I could before treatment started. As soon as I read there was a possibility I may keep my hair using a cold cap, there was no question I was going to give it a try. Anything to reduce the trauma of this whole thing. I was told very little about the Paxman cooling system but google and facebook groups helped to give me some tips and insight about what happens during treatment and how to care for your hair afterwards. Now I know that Paxman have all the information you need, that would’ve been a better starting point.

The first day of chemotherapy had many firsts for me, thankfully using the cold cap wasn’t stressful, or uncomfortable. Fitting the cap took time to make sure the sizes were right, but all in all the cold was manageable. I found that I quickly adjusted to the temperature and the weight and tight fit of the cap were almost worse as an inconvenience. I remember thinking I looked like a cross between a rugby player and an avatar walking through the ward with my cold cap in tow! But I didn’t mind if it meant I could keep my hair and an element of normality thought this.

My second treatment happened to be given on a bed and this helped an awful lot, laying down with pillows supporting the weight of the cap and connectors really helped to take the pressure off my neck and shoulders and allowed me to relax a little more, plus you can really get wrapped up nice and warm when you’re tucked up in bed rather than perched on a chair, definitely a recommendation from me if possible.

I noticed that there were very few people using the cold cap on the ward, not all nurses were confident to fit and use the system and as the weeks passed by I felt like I became more of an advocate than the nursing staff. They certainly seemed surprised to see it working for me.

I had very little hair loss over the first 9 weeks, a little thinning but no bold patches and nothing really to worry me. As I moved into the EC treatments in April I noticed an increased loss of hair around my parting and my eyebrows and lashes started to thin. I’d been very careful with my hair, washing a maximum of three times a week, naturally drying and plaiting at night. I used shampoos and conditioners to promote growth and look after my scalp and ironically I had lots of comments about how great I looked!

After the second EC my eyebrows and lashes disappeared completely and the thin patch at my parting grew to a little bold patch, but with the help of a fringe and dry shampoo it was virtually impossible to see.

Around a week after the second EC treatment, my hair started to grow back, the third and final treatment didn’t seem to affect my hair so much and I was happy to see that within a few weeks, the end of May, my thin patches were disguised and eyebrows convicting enough with a bit of pencil.

I never really thought about wearing hats, scarves or wigs during treatment – other than practical reasons when it was cold or to avoid sunburn! A real hair wig was my backup plan but I didn’t need to go there, and that is all thanks to the Paxman cold cap.

The only really awkward moment that I had was when I visited my hairdresser halfway through treatment for a trim, I didn’t want a wash or anyone to really touch my hair but my fringe and length needed to be tidied up, although she knew my situation it was a very awkward appointment, she insisted on washing my hair anyway and I felt everyone in the salon was looking at my understyled and under coloured hair. I’d definitely seek out a hairdresser associated with the Christies now that I know they exist – or ask for an appointment at a more private time.

So now I am almost 7 months after my last chemotherapy treatment and the little hair patches that I lost are around three inches long and thickening up my hairdo nicely. For me keeping my hair during treatment was such a big part of feeling normal, or at least pretending. I could do my hair and makeup and put on a brave face. I don’t even want to think about how I would’ve felt without hair or with a wig. I was able to regularly stay in touch with work colleagues, friends and family and although I felt vulnerable I am certain that keeping my hair gave me some confidence to keep getting out and seeing people.

Probably even more important for me, was that keeping my hair allowed me to recover my self-esteem quicker after treatment finished. After a few weeks, there was no sign of bold patches, within a month my hair felt strong enough to have highlights, wow, this definitely made me feel more human. I may still have the occasional whinge about the wispy baby curls appearing in random parts of my hair, but so many ladies going through treatment alongside me still have very short hair and were reminded daily for months of their hair loss and battle with cancer, in the main I have avoided this.

I would 100% recommend the Paxman cold cap, it worked for me, better than I could’ve imagined. I think the NHS could do more to provide information and training to staff about the system to make it even more successful, but I hope that all ladies feel excited about the potential of giving it a go.

 

"My second treatment happened to be given on a bed and this helped an awful lot, laying down with pillows supporting the weight of the cap and connectors really helped to take the pressure off my neck and shoulders and allowed me to relax a little more, plus you can really get wrapped up nice and warm when you're tucked up in bed rather than perched on a chair, definitely a recommendation from me if possible."

 
 

Would you like further info?