Side Effects, Wigs and Losing my Hair
Having swallowed a good load of pills and had a reasonably good night’s sleep, (despite crying myself off to sleep, still thinking “WHY?!”), I was feeling a little better the next day. Besides, I had to get up for Mollie. I just kept taking domperidone pretty much all day. I remember just feeling …well, chemical. I was more nervous about having to give myself the injection.
First Day after Chemo
At lunchtime I had a go at giving myself the injection; it was a single-use needle so it was designed for home administration. I didn’t push it all the way down so ended up giving myself half the injection, and the other half went all over the kitchen side. I texted Harriet about it but she said I’d given myself enough to benefit from it. It sucked.
In the afternoon, we went shopping to see about getting a new sofa. Ours was getting a bit old and manky. We spent quite a lot of time at the shop and then went up to my parents’ house for a Bonfire night barbecue; we’d been invited to stay the night and I felt we needed it. My mum and dad are quite hands-on with Mollie and she needed to feel some kind of normality since she was already sensing there was something wrong – even at 18 months old. Home with mum and dad calmed me down and that, in turn, had a calming effect on her.
When we got there, my grandparents had turned up (all the way from Scotland!), as well as pretty much all my friends from Stevenage, Bedford and Hitchin. The house was full and my parents had spent the entire day cooking – you could tell! Food everywhere. French onion soup, jacket potatoes – you name it. We had drinks and watched the fireworks and just spent time together. I was just about feeling OK and I managed to make it to 9:45 pm before I had to take more domperidone and get off to bed.
The following few days were just about getting over that first chemo session and preparing for starting my new job. In the week after I’d gotten over that exhausting nausea, I started to go back to the gym and got a few errands done. I called up the lovely Matt Cosway, now a good friend of mine, (then the HR Director at the new company) to give him my news. His reaction was just so compassionate – “Oh I can’t imagine how you must be feeling; that’s just totally shit.” Got it in one. “Don’t you worry about anything,” he said. “I’ll sort something out.”. I was relieved, to say the least, when he called back a little later to tell me that everything would be fine, I’d start on Monday, I’d get every 3 Fridays off for chemo and I’d be paid normally, even if I was too sick. I was blown away with the compassion he showed me.
Buying a Wig
I wasn’t due to lose my hair until around 2 weeks after the first chemo, but I decided to get ahead. The insurance company gave me a £250 allowance to get a wig, so off I went to Ware, Hertfordshire and met with two incredibly passionate ladies who run a shop there, “Hair to Ware”. The owner’s daughter suffered from alopecia and had always struggled to find decent wigs, so it inspired her mum to start a wig shop for those who needed them. She explained that the wigs were made of special fibres and spent a good couple of hours with me, explaining how to wash it, brush it, use a wig cap, how I mustn’t get it wet in the rain or have it on near the oven (!). I tried several different wigs, even a blonde one (which just didn’t work) until I eventually got a wig that looked as close to my long, natural hair as possible. I walked out of the shop wearing the wig and carrying a bag full of shampoos and sprays to keep it nice. I thought…it’s not forever. But I couldn’t feel comfortable with the short hair. It just wasn’t me.
Trying to Keep it Normal
On the day I bought my wig, I met with a fitness instructor at the gym and we devised a routine that meant I could still work out without lifting my arms above my head and potentially dislodging the port. He was awesome; when I’d booked the appointment I had explained to the receptionist that my goal was to stay active through treatment, but that I had this port so my movement was restricted. The instructor had taken this on board and done some preparation before meeting me; coming up with a good list of exercises then taking me through them during our meeting. I went to Tesco to buy things in my wig and it felt like everyone could tell it was fake hair, but of course, they couldn’t. Only I knew.
On Monday 18th November I started my new job, remotely at home. My new Macbook Pro arrived, I met with my new colleagues, explained what was going on and what I needed, then started immediately working on an implementation for a client in Sri Lanka – completely remotely. It was just what I needed at the time and I was grateful. Everyone was very understanding and kind to me; I’d asked if we could just keep it within our team for now and they all respected that. I was just too angry about it to talk about it further at that time.
I saw Dr Shah the week after my first chemo; he examined me and told me he could already feel a difference. It was softer and the edges of the tumour felt less distinct. He said he would arrange for me to go back to the QEII hospital to have a titanium clip inserted into the tumour so that they could still find it after treatment. I felt very encouraged by this though we still had a long way to go.
I think it was the week after that (i.e. the week before my second chemo was scheduled) that my hair began to fall out.
I was surprised at the rate I lost my hair. It went from nothing coming out, to one day just being able to wash my hair in the shower and feel the hair coming away. It took 2-3 days to go from a full head of hair to total slaphead.
I have always had very thick hair, so when I was in the shower on the first day, I could feel it coming away so I just went for it; started pulling it out. I was on my own in the flat; Mollie was at nursery and Andy was at work.
The plughole got clogged up, so I grabbed what I could and put it in the bin. A couple of hours later, when it was dry, I was able to pull a load more out. It was pretty upsetting, even though it was temporary. I just put it in the bin.
That night I told Andy it had started to come out. The next day it came out thick and fast in the shower, so again I really went for it and just pulled out what I could. This was the result:
It was crap and half-arsed, so I asked Andy to just take the scissors to it. He absolutely loved doing that; he just got the scissors and went mad. I was crying while he cut it off; it was devastating to me. It finally put something visible to my illness.
I can’t remember whether Mollie was at home when we cut my hair off, but I do remember being told I mustn’t cry in front of her because it would be scary for her. Part of me thought he was right but the other part of me felt anger and resentment – I mean, it wasn’t as if this was some small, minor thing. How can I NOT cry about this? I’d lost my hair and may still potentially lose my life; we didn’t have any idea whether this treatment would even work.
From that point, it was wig time all the way. Funnily enough, the wig fit better once my hair had all gone and I no longer needed a cap to hold it in place!