Yesterday I had to say goodbye to a friend. She was only 33 and had treatment around the same time as me, but her breast cancer came back with a vengeance and she passed away a couple of weeks ago. Her new husband had proposed to her about a week before they found out she had cancer...and had only been married for a matter of months before she died. Desperately sad.
I just wanted to guest blog this post she wrote for me on my blog Chemo For Beginners. I used the cold cap so couldn't comment on a very important topic for cancer patients...so she wrote the following for me on my behalf.
H is for hairloss.
H is also for having to buy scarves/ wigs/ hats.
H is for having to see your bald head in the mirror too.
H is for (beautiful and soft) hair regrowth.
H is for hairloss. As quite a girlie girl, after the shock of the cancer diagnosis, the horror of knowing that I was going to lose my hair was almost unbearable. For me, I was in such a state of shock at that time, that I couldn’t really contemplate using the cold cap and accepted that, to save my life, I would need to lose my hair. As the impact of this sank in, I found that to feel a little more in control I would need to take steps to help myself when this actually happened…
H is for having to buy scarves,wigs and hats. I visited Trendco to meet with a wig specialist to discuss my hair pre-chemo (I went with my long hair so she could see it) and to find a suitable replacement. The staff were lovely and very understanding (even though I felt as if it was all a dream – no, a nightmare – and I was simply looking in on another 30-year old choose a wig because she was going to lose her precious hair). You can get an NHS voucher to go towards the cost of the wig from your doctor or nurse. Be sure to ask about this. Don’t worry too much if the wig isn’t quite perfect as you can get them restyled or thinned out – either by the shop that you buy the wig from or you can book an appointment with Trevor Sorbie’s My New Hair (you might even get Trevor himself). I went for a hairpiece quite similar to my own hair but actually found that I only wore it nine or ten times. While I met a few ladies who wore their wigs every single day, including one friend who went funky and spent her days in a bright pink wig, I felt much more comfortable in hats or funky scarves to match what I was wearing, and less as if I was pretending to be something that I was not. Scarves can obviously be purchased from pretty much anywhere and I found that people stared much much less than I thought they might. You will need to work out what works best for you – wigs, hats or scarves – and until you do, I wouldn’t waste too much money on headwear or expensive wigs (for example real hair or custom-made). I was in touch with a girl who hated the lot and embraced the baldness, even as a bridesmaid to her sister. Brave lady.
A quick practical note on the scarves; square ones are best. You need to fold them diagonally in half to make a triangle shape and then put the longest side of the triangle along your forehead. The bundle can then be tied at the back or side of your head and you can even add a flower clip or something pretty to make it look more feminine.Click here for a link for a demonstration of how to tie a scarf. Breast Cancer Care also offer a free service called Headstrong with trained volunteers running private sessions talking through how to look after your hair and scalp before, during and after treatment. They also show you how to make the most of the alternatives to wigs by using scarves, hats and other headwear so that you leave feeling confident that you’ve found something that works for you.
H is for having to see your bald head in the mirror. So after one treatment I had my long hair cut into a jaw length bob. Everyone was telling my how much it suited me which I thought was a waste of words as it was clearly a halfway house to my baldness. I had a bit of a plan though. I visited my hairdresser and asked her to tightly plait my hair and cut off the whole plait. I then bound my plait up with hair ribbons and sent it off to the Little Princess Trust. If I wasn’t going to be able to have my beautiful hair then I was going to make sure another person who deserved it could! This amazing charity uses human hair to make wigs for children that have lost their hair due to cancer treatments. The small act of doing this did help lessen the blow of losing my hair a little bit.
After my second treatment I was terrified about the inevitable loss. My hair follicles on my head felt weird. Kind of zingy and as if they were opening. They ached too and clumps of hair began to come from my head if I loosely pulled at them or washed my hair. Obviously I knew what this was leading up to… and I honestly felt one hundred times better once I had done the deed. So, 2 weeks after my first chemo, I was home alone and I shaved my head using clippers borrowed from a friend. I just sat in front of a mirror with a blanket underneath me to collect the hair and went for it. It was a scary sight seeing myself in the mirror for the first time. I guess it was the first time that I felt like a cancer patient but at the same time I felt totally and utterly numb. As if it wasn’t me but some other poor girl, and that at any second I would wake up or head off to work as the previous me would have done. It was honestly the strangest and most surreal half hour of my life. Because of the numbness, the upset didn’t really register. I didn’t cry (although I have heard from other women that this was unusual), it was what I HAD to do to live. So I did it. Showing my partner when he came home was strange, no doubt as much for him as for me. However, once I had done this, the thing that I was so very terrified of had been stared in the face and dealt with. And from then I was going to get new hair.
I will just mention here that it is not just your head that you will lose hair from! Over time you will probably lose all of your facial and body hair. You will discover it in strange ways; your nose will run as there are no hairs up there to stop the flow! But it all comes back, sometimes thicker than before!
H is for (beautiful and soft) hair regrowth. I was told that three months after the final chemotherapy treatment you will have a full coverage. I found this to be true and at this point bravely outed my new hair. It is much curlier than before and incredibly soft. I would never have chosen to have short hair but by wearing funky headbands and clips I feel more confident and some days I actually like how it looks now. Hair growth is unfortunately never as quick as you want it to be – but if you are really struggling with your new short hair do, or want longer hair for a special occasion, Racoon hair extensions who provide subsidised and very gentle extensions after approximately six months of regrowth.
Maintenance and regrowth. I only ever shaved it the once. Some ladies shave the regrowth and wispy bits during chemo, but I would never have shaved it off again as I was so happy to have new bits growing back! And it was so awful I wasn’t going to put myself through it again. When it grew back it was fine, it did not need another shave, just regular cuts to make a style to give my hair more of a “do” rather than it all being the same length. I washed my hair/head with baby shampoo as I wanted to be gentle to my head. I sometimes put Bio Oil on my head afterwards to keep it moisturised. When my hair had returned I bought some gentle natural shampoo from the Body Shop. I quite like the idea of not putting any chemicals on my new hair but we will see how long this lasts! If you’re not too bothered about the chemical thing, there’s a new shampoo called FAST (Fortified Amino Scalp Therapy) which they claim doubles the rate of your hair growth and was developed for chemo patients…I don’t know if it works – but coule be worth a try?
Sometimes hair regrowth is a slightly different colour. And might be curlier than before. If you have grey hairs or usually dye your hair, the official line is to wait 6 months after your final chemo before dying it. However, I know quite a few ladies who only waited a couple of months, and used a gentle ammonia-free, semi-permanent vegetable dye such as Herbatint with no problems – but be aware that you might need to go a few shades darker than normal as the colours come out funnily for some reason…
Good luck girls. I did it and you will too. X.
RIP Jo. You will be forever missed.