Location: Mansfield, UK
Cancer type: Breast
Drug type: Unknown
Hair type: Long
"Terror doesn't cover the feelings about hair loss, I’ve been told by well-meaning friends 'your hair or your life'. How you feel about yourself impacts hugely on how you manage your journey. So much was out of my control."
I’m Helen, I have been married for 24 years and am a mum of four. We have 3 sons and a daughter.
I work for Weight Watchers as a Coach, I love my job.
I went for a routine mammogram on 16 January 2017. My first had been 3 years ago when I was 49. I hadn’t felt anything, had no changes, it was a routine check-up. I nearly didn’t go for the appointment. It fell between two family birthdays, I considered I was too busy.
On the 2 February, I was told it was cancer. I’m not sure we really processed what was being said, all I heard was radiotherapy, not chemotherapy. The relief was palpable, no chemo meant no hair loss.
At a follow-up appointment the goal posts moved. The results from further tests meant in addition to a lumpectomy and radiotherapy, I was offered chemotherapy.
I felt sick when the reply to my question ’Will I lose my hair?’, was a very blunt ’yes.’.
Terror doesn’t cover the feelings about hair loss, I’ve been told by well-meaning friends ’your hair or your life’. How you feel about yourself impacts hugely on how you manage your journey. So much was out of my control. I had yet to discover how debilitating chemotherapy would be for me. In fact, the person you are can disappear as you get through the journey, losing my hair would only compound this.
My job is very public. I carried on working through treatment. I was told how brave, how strong and how positive I was. I’m not sure those words would have been said to me if it weren’t for the possibilities offered to me by Paxman.
The hope that I would keep my hair was key, some of it, I could accept some hair loss. I was informed that I would definitely lose between 50% and 70% of my hair. I was told it was very cold, painful and that patients coped differently with the experience. My reply to that was that they could stick me in a freezer for hours I would withstand anything to keep my hair.
A friend who has gone through this experience told my husband about Paxman, he came home from work saying it was something like Pacman, the computer game from the 80’s. Our friend was insistent that it was all about the fit of the cap, it had to be tight, it had to fit firmly at the crown of the head, if it didn’t fit properly, then hair loss would result. She also said it was important to be comfortable and warm and to persevere.
There was some conflict initially over the type of cold cap to be used at the start of the treatment. I wasn’t confident that it was the Paxman that I was going to be able to use. With the information from our friend I had enough knowledge to know exactly what I wanted and was able to contact Paxman to confirm what I thought I knew. I spoke with Alex, who gave me all the information and consequently the confidence to know that it was the Paxman cold cap that I had to have.
The treatment began in May in Mansfield. I was terrified. Not of the treatment but in ensuring that I could use the cold cap that it would be available for me, that the cap would fit, that it would work. Getting the fit right is important and so scary, you have to trust the nurses that they know what they are doing. I sat, terrified that it wasn’t on right, that it wouldn’t work, that it wasn’t cold enough. I wasn’t in agony. Did that mean it wasn’t working? The nurse said she could check that it was working but in so doing we would have to start again from the beginning of the session. This we did, she phoned Paxman too, to do a diagnostic test on the cooling machine. It felt cold, by the end of the session it was uncomfortable. The treatment time is extended because you have the cold cap on before and after the drugs are given. Ice on your head at the end of your treatment is a good thing. The more ice, the better. It instils hope and confidence that the machine has done it’s part of the bargain, the rest is down to your own body’s way of dealing with the drugs.
The second and third times were more uncomfortable as my hair thinned, I felt the cold more and I felt sick. It didn’t matter.
Would I use the cold cap again? Most definitely. Would I recommend it? Most definitely.
It is really scary as you watch and wait for any hair loss. I was so scared of it coming out in the shower or on my pillow. I learnt not to comb or brush my hair very much. I wore it in a plait once I started to lose hair. One Tuesday after the first chemo, I was untangling my hair, I had what felt like so much in my hands, I thought this was it, I was scared the cold cap wasn’t going to work for me. That morning I braved the wig shop, feeling sick as I did. I made a second appointment for a fitting. I cancelled it. I didn’t have to return. I washed my hair very infrequently because it did come out in the shower. I used Paxman shampoo and conditioner. I wore my hair in a plait for the duration of the treatment and a good few weeks after. The day I went to the wig shop I truly believed I was going to have to have it cut. in readiness for losing more hair. I didn’t. I didn’t cut my hair at all. It is thinner. but it is growing. I see now that most of the hair loss resulted at the hairline at the bottom of my scalp. It did thin on top. I found ways to wear my hair to disguise the thinning.
It is recommended not to have any heat on your hair during treatment and three months beyond. Nor to colour it. My best friend has been dark shades of eyeshadow which I used to colour the greys.
"I am so grateful to Paxman's conception and development of the cold cap. It has had the most beneficial impact on my experience. I know I wouldn’t have been as brave and positive without it. I wouldn’t be feeling as buoyant and ready for what the future holds if I hadn't kept my hair."