My daughter’s cancer hair loss journey
We chatted to Penelope’s mummy Vikki about how Cancer Hair Care supported Penelope through her brain tumour diagnosis at two years-old and subsequent hair loss.
Here is their journey, from Vikki’s perspective.
I never thought I would be dealing with my two year-old’s hair loss.
Physically, it bothered my daughter when her hair came out, but otherwise, it didn’t register as she was so young.
Cancer experts aren’t hair loss experts.
The hospital care and attention Penelope received was second-to-none, but it was often only about the medical aspects of her treatment, such as doing observations, or chemotherapy.
When I visited Cancer Hair Care, I was extremely fragile.
I felt that if anyone was too nice to me, I’d cry. I remember Jasmin saying ‘This is the place for tea and tears’ and I had an outpouring of emotion. If it weren’t for Cancer Hair Care, I wouldn’t have had that conversation with anybody else.
Awareness is everything.
To have someone who took me seriously, listened to me and answered my questions was amazing.
Hair loss is surrounded by a lot of myths.
Well-meaning people will be kind, but they can be misinformed. With hair loss, where you get your information from is really important.
The charity’s Hair Loss Dolly was a great help.
To receive a dolly with my daughter’s hair colour and skin tone and to play with made a great difference.
Her hair loss still has an impact now.
She was quite little when it happened, but now, she’s processing it and because she’s had her Hair Loss Dolly throughout, she’s processing it differently.
Hair is so symbolic.
After treatment, with a child who’s had cancer, the reminder is the hair loss, which takes away the natural flow of the rite of passage.
My daughter hates having her hair washed!
I love it, but she loathes it. I do it once a week but it’s such an ordeal. To cut down the experience, I moisten my palms with shampoo then put it on her dry hair, meaning it’s one lot of water rather than two.
Currently, Penelope’s hair that’s regrown is very, very fine over her radiotherapy patch.
I thought there was no hair and it felt flat, so I’d run my finger downwards. When we had her hair cut, Jasmin showed me two things: To stroke the opposite way and to close my eyes because then you can isolate the sense of touch. Her hair is still lopsided a bit, but there is hair there. We’re not sure how much it will grow back, but there is hair.
Some parents share a lot of their child’s cancer journey, some don’t.
At the beginning, we didn’t, and I couldn’t. But we had some people who just didn’t know. I changed my mind when we met up with friends whose child had come out of treatment at the same time. We went out and had such a special day. There was a picture of Penelope hair-free and her friend, and it was such a happy day that I shared the photo on social media.
Psychologically, I’m trying to find a good balance.
I was moaning to a friend that ‘Cancer’s always there’ and my friend said – Yes, but Penelope’s also bright, articulate and funny and sweet.’
Like every parent, I envisaged my child’s first lock of hair being cut as a keepsake, rather than falling out because of cancer treatment.
So, when Penelope had her first proper haircut as it regrew, Cancer Hair Care/s expert Michelle gave me her first lock of hair in a ribbon. I’ll never forget that.
How did you decide whether to cut Penelope’s hair and what was your journey?
I was really against shaving her hair off at the beginning of her treatment. I realised it was the best thing to do, but with cancer, things don’t go as planned and Penelope was in too much distress ultimately for that to happen and her hair fell out instead.
What was your most challenging hair-free moment as a parent?
A while ago, they did Silly Hair Day at Penelope’s school. I didn’t want to put dye on it because of the bald patch, so I bought a plastic hairband instead.
I love crafting, so I got my glue gun out the night before to wrap fabric around the band to make it softer for her and so it would stay on her head – then I found some pom-poms and clips.
The next morning, we’re queuing to go in, and the other children have got bunches, hair dyed every hue of the rainbow and elaborately OTT. Penelope saw them, pulled her hairband off and said she didn’t want it any more.
We have a project called ‘Courage Crowns’: what was your moment of hair loss courage?
I’m not sure I can pinpoint a moment. For me, there is Life Before Cancer and there’s Life After. It’s a measurable point for anyone who has been through this experience. Your threshold for worry changes entirely. Now, post-diagnosis, my life is in small chunks of time. I can’t think too far ahead – we’re always living from scan to scan. I can deal with enough information to be clear and kind, but that’s it.
Clear and kind choices for children
Let them have a say in their headwear choices
There is little say that children can have about cancer treatment. Choosing headwear is an ideal opportunity to allow children to have some fun and input. When we visit children in hospitals we often ask what their favourite colour is. If we are told pink and yellow we will also put other colour headwear choices in front of them (even knowing that they are unlikely to choose those shades. This can help them to have a range of options. Its can be very empowering for a child to say “no I don’t like those colour hats and then YES thats the one for me”
Back to school
For older children, going to school for the first time can be huge. Cancer Hair Care offers comprehensive support, including bespoke headwear in your child’s school colours.
We can also provide assembly plans and lots of other classroom material. Just get in touch with one of the team.