Part 8. Emmageddon: Sunshine always comes after the storm.
Storm Emma, named by the Portuguese apparently, met the The Beast From The East and all hell broke loose last week. When I say hell, what I mean for Brighton residents is that we were all thrown in to mild panic when Carol on the telly weather told us about the red alert (in South Wales), because nearly all of us live on steep, ungritted hills. This means having to do our best Torvill & Dean impression when doing the emergency houmous* run. Now that’s ‘Emmageddon’ (as a red top called it this week). Obviously I recognise that scary horrible stuff happened across the country because of the clash of the icy titans, but here we just did panicking and kept our kids off school just in case.
What it meant for me was carrying on with the original plan, which was to work from home while my immune system was potentially in the danger zone. Week 2 after chemo is when all your virus-fighting cells are at their lowest ebb, so my cold, drafty, open plan office on the side of a warehouse is not the best place to stay warm and bug-free. What Emmageddon did mean was more acts of kindness, this time from the chaps at the local cab firm who got me to my CT appointment safely, on time and with no charge. And it meant negotiation and planning for the kids being with their excellent dad as planned as I really needed some time alone and feared entrapment with two very lovely but bored girls!
So the last 2 and a half weeks have passed by very quickly. My body’s reaction to chemo number 1 was less violent than I anticipated, on all fronts. That’s not so say I didn’t feel ropey, I definitely did, and I had some uncomfortable (and weird) side effects. But there wasn’t a day where I took to my bed. Had a few naps on the sofa as the tiredness was pretty heavy, and I walked about for a few days feeling like a space cadet, but otherwise pretty much okay. By Saturday (3rd March), nearly 2 weeks on, I bounced out of bed and did a mini workout, danced around my kitchen doing chores and marched in to town for coffee with Capitan (new Spanish version) KP, then lunch with Nellie before wigfest! I felt amazing….and a bit shattered by about 7pm, but that’s fine! Sunday, however, I crashed. I felt like I did on chemo Monday. With hindsight (and info from a nurse friend, plus google) it looks like my blood pressure took a nose dive which felt bloody foul. Swimmy head, blurred vision, felt faint, muscles weak, slightly slurry speech. Mum made divine emergency veggie shepherds pie. Capitan KP came and sat and Di arrived to collect the wig I realised I hate and she delivered A LOT of chocolate. I haven’t eaten chocolate in weeks and I inhaled a grab bag of minstrels Sunday eve! #KnightsArmy (and the required salt and sugar) kicked right in!
So…….wigs!! Saturday wig fest was a lot of fun. This is where I must point out that I fully recognise how very not fun going and trying on wigs is for people in my situation. Hair loss is a massive psychological hurdle as for many of us it’s huge part of our identity and sexuality. Women and men alike. But I’m guessing – because I’m not an expert – more so for women. For me it’s cosmetic even though I genuinely love my hair. It’ll fall out, I’ll be bald and there’s a danger (a real one) that I may look like a chubby Mr Burns in drag. But that’s where a good wig comes in – and I do love a wig. And then my hair will grow back, possibly slowly and potentially as a loose afro – chemo hair tends to grow back curly and my hair is already curly.
So Di and I went to TrendCo, the wig place, after a lovely lunch at Six in Hove. When I say lovely, I mean really lovely and hitting all the healthy eating spots for me! Just so we’re all up to speed on the #KnightsArmy characters, Di is the angel of the hair who’s been a friend and my hairdresser for about 8 years and is another sister figure with ALL the love and practical help. I adore her. Gill (with a G!) was our wig stylist and provided the wigs we’d already researched (well Di had) as being good potentials. Gill had a gentle kindness that was nurturing and heart warming. I can see that she’d be perfect with people finding the whole hair loss thing difficult. I wasn’t one of them. I was on fine form and managed fairly minimal jokey swearing and we 3 giggled quite a lot. We thought one wig, ‘Evanna’, was going to be the day-to-day one as it was styled a bit like my current bob, so I bought it. By Sunday morning Di was returning it as it just felt and looked too ‘wiggy’ and she collected up the next wig up in our list of faves the following day!
Unfortunately while at TrendCo, Di, with her eye for all things classy and expensive, also insisted I try wig number 502A, a super lush, long, flowing brunette sex-bomb type thing, which made me get up out of my seat with joy and do Charlie’s Angels impressions. It is likely to join the blunt fringe ‘classy business hair’ number as it just felt FABULOUS!
Wigs are insanely expensive. I mean stupid money. Doubtless this is because someone clever has created something that passes as beautiful hair with their actual hands, piece by piece. Or they’re made by tiny people wearing primary coloured felt costumes. One or the other, both being really labour-intensive. I’m very glad to have discovered charitable people and foundations that help women with wigs (and knitted bra insertions for mastectomy patients!) as, if you couldn’t afford a decent one, this scenario would be really really shit. Or all about scarfs, which my 14 year old has banned for being too ‘cancery’, Fair enough! I am very very lucky in that although my family is not wealthy, my 2 Dads are able to help me with this, enabling me to buy the wig(s) I want, within reason! I’m so massively grateful to them for that. Not least because, as a friend pointed out, this isn’t just something for a week – this will be long! And another friend delicately pointed out that I’ll probably look like a c@*t with no hair. Time will tell!
Not that much time apparently. What came next on Saturday was a need to brush my very curly, quite matted hair when I got home from wigfest. And guess what, on the very day I shop for wigs, 12 days after my first chemo, my hair started falling out. By Sunday what I caught in the shower adorned the tiles on the wall in massive clumps. Monday and Tuesday I donned a baseball cap for work as it continued to fall mainly from the crown and gather at the ends forming dreads. By Tuesday lunchtime I text Di asking if she could get rid of it. By 6.30 Tuesday night she’d done this….
It’s falling out at a super fast rate so I may only enjoy his cut for days, but it’s a fantastic window in to regrowth time, a time I thought I’d hate. And it was SO good to get rid of clumping, dead hair.
Before cutting a load of dead dreads off something happened that made Tuesday 6th March the best day I’ve had in weeks. Debbie, my specialist nurse called me, following my request to know my CT results ahead of my oncologist appointment at the end of March. She read the report while I was still in the car having pulled up outside Di’s. She said the words ‘no distant disease’. I held my breath waiting for those words – or maybe, ‘it hasn’t spread’ which would’ve worked better for me personally, but I got what she was saying. Basically, permission to breath now Emma. I text all the people immediately and when I said it out loud to Di my eyes got very hot momentarily – happy tears. This is the shit that is golden.
So I’m officially dealing with the 2 Ls only. That’s what I was going with anyway but to have it confirmed is incredible. But what of the 2 Ls? There have been so many questions! So my next blog might just have to be the science bit!
In the meantime I’m doing well. My hair is falling out and that’s tough on more people than just me – my 9 year old daughter for one hates it. But as with everything we talk, we cuddle and we know that at some point this will be over and mummy will return to looking like mummy …..maybe….maybe mummy likes her Rizzo/Halle look!
I have my own fucker of a storm to weather but as my sis-in-law’s Nan, Pamela, rightly said last week, sunshine always comes after the storm. I plan to have a lot of sunshine in my life both during and after this storm – little breaks in the cloud that bring joy. #KnightsArmy is on the case!
Little wanky visual treat to sign off with – below is the sunshine I experienced on Saturday when I put THE wig on!