Location: Lytham, UK
Cancer type: Breast (DCIS and HER2)
Drug type: Taxol x 12 weekly doses alongside Herceptin every 3 weeks for 1 year
Hair type: Long, Thick, Coloured
"I could always carry on my daily life throughout chemotherapy without anyone knowing what I was going through."
My name is Jill, I’m 50 from Lytham and I manage a large and busy teaching team within a College, so in early December 2020 when I attended my annual mammogram I didn’t expect the following journey to unfold.
I had been having mammograms for several years via the family history clinic due to losing my Mum to breast cancer when I was only 7 years old. So, to say I was paranoid about breast cancer was an understatement.
So, when I was recalled for biopsies in both breasts on New Year’s Eve and diagnosed with extensive DCIS in my right breast, I mentally revisited everything I had witnessed as a young girl when my Mum had been ill. I was told that I would need my right breast off and from that moment on I decided that I wanted both gone. One of the reasons for this, apart from family history, is that in 2015 I had been diagnosed with Atypical Ductal Hyperplasia so I knew I had a good chance of my left breast turning cancerous at some point in the near future. My surgeon was supportive of this, and my private healthcare agreed too, so I went ahead with a bilateral mastectomy and reconstruction that all went fabulously well with zero pain. (I’m much perkier now!)
At this point I was told that I had only a 10% chance of needing chemotherapy, so I thought the odds were pretty good in my favour. So, after pathology had reviewed my removed boobs they found my right breast not only contained the DCIS but also a HER2 8mm tumour but thankfully there was no lymph node involvement. So, to give me the best possible option against reoccurrence I was told that chemotherapy alongside Herceptin was the best route in case the tumour had sent any cells elsewhere in my body.
The very thought of chemotherapy terrified me as I thought I was going to lose even more of what made me a woman. I avoided Google but I had been given a leaflet which I didn’t want to read and it mentioned numerous side effects so I threw it in the bin. My oncologist though was really reassuring and told me that losing my body hair was inevitable, but my head hair would probably just thin. He even asked if I would be cold capping as if it was the norm to which I said yes even though I’d never seen a cold cap or knew anything about it.
My specialist breast nurse (Nicky) said that some women give up with cold cap so as soon as she said this, I had an inner strength moment and thought well that won’t be me I will be Superwoman and not be beaten by a cold cap.
On March 19th (weirdly my Mum’s birthdate) I began 12 weekly doses of Taxol and I was still terrified. But all the nurses were superb, and they explained how the cap would work and would spray wet my hair and liberally apply conditioner before fitting the cap. All I could think of was what the hell do I look like.
But then I was introduced to another patient (Karen) who was also using the cold cap who came to talk to me after seeing how anxious I looked. Karen was nearing the end of her chemotherapy and was a pro in knowing that a bobble hat (it was Winter) was necessary after the cold cap. And guess what, I hadn’t brought one, but she had a spare to lend me. And the best news was Karen still had hair. From this moment on I stopped feeling as anxious and began to think of chemotherapy as my medicine which was doing me good and maybe I would retain my hair.
I can honestly say that I didn’t find the cold cap uncomfortable, but it was the anxiety of wondering where I would end up after 12 weeks of Taxol that consumed my thoughts, but I knew I would follow all of the hair care advice to the letter and give up all heated styling, no colouring and be as gentle as possible with my hair in order to give me the best chance. Every week I would ask the nurses to check the machine to see if it was working or to tighten me up, which they always did without fuss. And to avoid any doubt the machine was always working it’s just that I never really found it that cold, although I was having frozen toes and fingers to prevent nerve damage, so they always felt much colder than my head!
I also still continued with my all natural hair growth capsules and eyelash and eyebrow serum despite all of the instructions saying don’t bother if you are on chemotherapy. My motto was any port in a storm!
After Week 3 or 4 I started to notice more hair on my brush than normal and thought oh here we go but I knew I needed to go on and so I read all of the patient stories on the Paxman website to give me some comfort.
By Week 8 or 9 I had a particularly heavy shed whereby my hair became thin on top and I shifted to a smaller cap size but I still had a lot of hair and friends and colleagues couldn’t tell much difference.
From Week 9-12 I still had shedding, but it slowed down and became less and less and my paranoia started to ebb away.
I am now 3 weeks post chemo and believe I have lost approximately 50% of my head hair but I could always carry on my daily life throughout chemotherapy without anyone knowing what I was going through. I even retained my eyelashes which I was delighted about too, although my eyebrows thinned, and I had no bald patches on my scalp either. As I had long hair I gripped my hair back, quiff like, so that my thinner hair on top didn’t show. To say that I am ecstatic with my final end point is an understatement as I’ll be able to return to work without having my breast cancer diagnosis on my head.
Yes, I’m desperate for a proper colour and cut and to use a hairdryer to get some bounce back in my hair but I’m willing to wait a few more weeks before I take the plunge although at 3 weeks post chemo my shedding has all but stopped so I know it won’t be too far away.
"Thank you to the amazing team of nurses who looked after me each Friday at The Christie private care ward especially Jo who used to give me a pressure point massage around my temples and forehead before applying my cap. Also, Dan, Trudi, Donna and Yvonne who were all fabulously supportive, patient and reassuring to me as an anxious patient! And a huge thanks to Karen who came and sat with me when I was at my most vulnerable – we are now friends for life. My mantra throughout this is if I can help one other woman (or man) going through breast cancer by telling my tale then I will as when I started I couldn’t say mastectomy or chemotherapy without becoming emotional. So don’t be afraid and remember, as I was told a lot, it is your journey, don’t believe any horror stories and you too can be super woman or man! "