Since last I wrote I am pleased to report that absolutely NOTHING of note has happened. There have been no mishaps, mix-ups, mad dashes to the hospital, or major disasters. There haven’t even been any minor disasters. In fact, when all’s said and done it has been calm, quiet, relatively plain sailing weather here in WeeGee land for ooh – at least three whole days. Needless to say, I made the most of it:
And before anybody asks. Yes: I did move, you can tell by the change of clothes and no: I don’t regret a single minute of my lazy weekend in the sun. It was grand. Just what the doctor ordered, thank you very much.
The best laid schemes o’ mice and men (gang aft a-gley)
My last few posts have been a bit functional – a thing would happen, and then I would have to write about it, because when I get to the end of this particular chapter of my life I want to be able to look back through a record all of the things that happened during it. The past four months have been very strange indeed, and while it seems unlikely that I’m going to forget any of it in a hurry, I’m sure in years to come there will be small details that I’ll be glad I took the time to write about. Small details have a habit of escaping from your memory if you don’t put them somewhere safe.
That said, there is more to this chapter of my life than the things that have happened and the small details I hope to remember in the future. There are all the things I have learned along the way – about myself, about human resilience, about hope, and about how important the future is. Then there’s the stuff I’ve learned about kindness, friendship, fragility and even, in a strange and not particularly religious way, about faith. I hope to find time to write about all of those things in the fullness of time.
And then there are all the things I have learned about living with cancer. Nobody becomes an expert on living with cancer, mostly because it isn’t the kind of thing you want to devote enough time to make you an expert. But if you get cancer you just have to find ways to live with it and once you’ve found them, I don’t suppose it does any harm to pass them on to others in case they (or the people they love) need to know about them. Back in January, when I revived my blog, I hoped I’d be able to fit a bit of that into my writing too.
The trouble with chemotherapy is that it has a habit of stuffing up your plans – having extra time on your hands is one thing. But having extra time on your hands and being awake all at the same time? Yeah – that’s another thing altogether…..
STOP THE PRESSES though because I have time on my hands today and I am very definitely awake so I thought I would take the time to share the depth of the knowledge I have acquired on……. dum, dum, dum: living with cancer related hair loss.
Sounds like fun, right?!
Living with cancer related hair loss
Back in January I wrote about the process of shaving my hair off. For me, it was an important decision and formed part of a narrative about control that I wanted to build around my cancer diagnosis and treatment.
I know I’m stating the obvious, but I am not a doctor. I mean sure, I can google medical stuff* and I have enough smarts to make a reasonable fist of understanding some of the clinical literature but at the end of the day, I don’t have the specialist education or skills to figure out how to treat my cancer or make me better. I kinda need an oncologist to figure that stuff for me. Luckily, there are plenty of oncologists on hand to do just that, but I have to relinquish almost all of the control and do exactly what they tell me to do, when they tell me to do it. Against that backdrop, exercising what little control I can has become very important to me. And the first opportunity I got to take a bit of control was related to how and when I lost my hair.
As an aside here, I think it is important to go back and repeat a point I made a while back and it is this: not all chemotherapy drugs cause hair loss. It was certainly an assumption I made, but I’ve met lots of people at the chemo suite with full heads of their own hair still growing very ably. I’ve also noticed my own hair starting to grow back (although only ever so slightly) since switching to the new chemo drugs which are slightly ‘gentler’ than the big guns they went with in the first instance. If you ever find yourself having to have conversations about chemotherapy – and I hope you never do – it might be worth investigating whether you are actually likely to lose your hair before you enter a period of official mourning for it.
But, as things stand, almost all the chemotherapy drugs currently used to treat breast cancer will cause at least some degree of hair loss. There’s no way around this at present – if you want to stop the breast cancer cells from dividing, the drugs that do this will kill off the hair follicles too. From fairly early on, I knew I was going to have to get my head around losing my hair.
Of course, it isn’t just the hair follicles on your head that are affected by the chemo: IT IS ALL OF YOUR HAIR. Which is neither all bad, nor all good. I mean, I miss eyebrows on a daily basis and there are Shakespearean levels of tragedy (or comedy, depending on your mood) to be found in trying to put mascara on your TWO REMAINING EYELASHES, but I haven’t had to shave my legs since before Christmas and overall, I’ll take that.
To cold cap or not to cold cap
In some areas of the country, including where I live in Leicestershire, women undergoing chemotherapy for breast cancer are routinely offered access to a device known as the cold cap. In layman’s terms, the cold cap freezes the hair follicles, protects them from the ravages of chemotherapy and in some cases, stops the hair from falling out. There aren’t, as far as I can tell, any particularly reliable stats on how effective the cold cap actually is. Anecdotally, from the support groups and women I’ve come into contact with, I think the best you can say is that sometimes it works, and sometimes it doesn’t work.
I was offered the use of the cold cap. I decided against it and now HERE I AM, four months and one baldy head on. It really isn’t one that I regret.
In the end, for me, the decision was a relatively straightforward one. For a start, the cold cap adds quite a long time on to your treatment slots. When I was having the EC treatment I was usually in and out of the chemo suite within an hour and a half. With the cold cap I’d have been looking at more than double that. For another thing the cold cap FREEZES your head. I’m not even kidding – it actually freezes it, as in, when you take it off there are ACTUAL ICICLES on your head. I’m not a big fan of being cold at the best of times but in the end, the thought of ACTAUL ICICLES growing on my head was a pretty key factor in my decision making process.
Finally, there are no guarantees with the cold cap. When I weighed up the extra time on the chemo suite whilst ACTUAL ICICLES were growing on my head against my emotional attachment to my hair and then factored in the fact it might not work anyway I just couldn’t make a case for trying the cold-cap. For me – and this is very personal – I decided that it would add further distress and suffering at a time when I needed to make things as easy as I could on myself.
The cold cap just wasn’t for me. I accepted I would lose my hair, shaved it off and somehow, found a way to get along in the world as a baldy woman. Do you know what? I don’t even hate it.
Getting wiggy with it
I got my wig before my hair had fallen out. There are various schools of thought on when the right time to buy a wig is – before treatment starts, during treatment, with a full head of hair, partial head of hair or no hair at all. In the end I think you just have to do what works for you. Personally, I wanted to have my wig to hand straight away in case I discovered a traumatically weird head under my hair. Turns out the head was all quite normal under the hair but, you know, be prepared has always been my motto.
I went for a style that was similar, rather than exactly the same, as my natural hair in the hope that it might sort of trick the eye and lead people to think I’d just had a new hair do. The salon was a personal recommendation from a friend of my mum’s who had also recently had occasion to purchase a wig. I can’t stress enough how important it is to go to a good wig fitter (or ‘hat with hair’ fitter as my chap called himself). If you can get a personal recommendation so much the better, but if not take your time and do some research.
Help towards the cost of a wig is available but it is based on income and I was only entitled to the standard VAT exemption for people being treated for cancer. I didn’t end up with a cheap wig but we also didn’t quite go to the extent of investing in a real hair wig. The difference in price is pretty phenomenal and the advice I got at the time was that the investment wouldn’t necessarily pay off. Plus, I’m reliably informed that real hair wigs are a pain in the bum to care for. Overall and in all honesty, I don’t know if it really matters how much you spend on your wig but I have been warned against the temptation to buy cheap ‘fashion wigs’ from eBay so I thought I might as well pass that particular tip on.
My own experience of choosing a wig was absolutely fantastic. I walked in, the lovely chap took one look at me, produced a wig and put it on my head. That was the wig I walked out of the shop with. It was perfect.
As for my thoughts on wearing a wig? I guess it has taken me quite a lot of getting used to. It makes me looks surprisingly like my mum, which is fine, of course, but disconcerting nevertheless. I struggle to regulate my temperature a bit and tend not to wear it unless I can be sure about how hot (or not) it’s going to be. My fears of it blowing or falling off passed eventually but I do find it hard not to fuss around and fidget with it to make sure it’s straight. And there’s nothing sexier than a woman yanking her wig a few centimetres to the left as she walks up the road is there?
My overwhelming feeling when wearing my wig though, is that of someone attempting the ingognito vibe. I don’t know whether other people can tell whether I’m wearing a wig or not, and to be honest I don’t much care. But I do occasionally feel like I’m dressed up as a character from guess who, or that I’m wearing some kind of comedy disguise. And I’m not entirely sure how I feel about that…..
Fifty ways to tie a headscarf
Spoiler alert! I don’t think there are actually fifty ways to tie a headscarf, but then again I don’t think there are actually fifty ways to leave your lover either. And I’ve been singing that song for days now so I should know.
If the wig has remained a work in progress, I have very definitely embraced the headscarf. I’ve come to take the whole headscarf thing pretty seriously – I have squillions of the things in a range of colours, patterns, fabrics and shapes. Overall, I find you need plain scarves to go with patterned clothes and patterned scarves to go with plain clothes. As a natural brunette I don’t suit particularly pale scarves and white scarves are a complete no-no: I end up looking like the walking wounded with bandages tied around my head. Apart from that anything goes, although I prefer styles that tie to the left hand side for some reason. Oh – and I absolutely cannot get away with any kind of top-tying/turban style unless I fancy the 1950’s housewife, or Professor Quirrell look. Which usually, I don’t.
I’ve been thinking lately about how I’ll miss the headscarves when it’s time to hang them up for good. I think I’ve come to see them as a badge of honour, or perhaps, more accurately as a suit of armour. They sort of mark me out for what I’m going through, but also cocoon me from the worst of it…. I don’t know.
Hey, I’ll tell you what though? Once all of this is done with maybe I’ll just go right ahead and turn into the eccentric middle aged woman I’ve always secretly wanted to become and keep on rocking the headscarf regardless.
Wherever I lay my hat
Hair loss is probably the most visible consequence of receiving chemotherapy and, in its own way, it’s challenging. For my own part, I don’t so much mind being baldy, but I have at times, felt really quite low because I don’t look like myself anymore. It’s an important distinction and not one that would necessarily have made sense to me before my treatment started.
As far as I can tell, some people have an incredibly strong emotional response to their chemo related hair loss before it happens, some respond while it is happening, and others once it’s all gone. I’ve wondered if perhaps I’ll have the strongest response of all when it starts growing back. I find it odd, and not at all comforting, that when it does grow back it will be DIFFERENT. It will be thicker, coarser, very likely curly and one way or another unruly for at least a year while my hair follicles recover from the battering they’ve had.
My biggest fear though? I admit that this is pure vanity but I’m scared it will grow back grey. I am after all, a woman of a certain age now……
But we draw a line under that and move on. This isn’t a post about living with the mad chemo curls that might grow back in a few months time. It’s a post about living with cancer related hair loss. As I reflect on what it has meant for me I can’t help coming to the conclusion that whilst I would much sooner have kept a full head of hair throughout my treatment if it had been comfortably possible, losing my hair hasn’t even been close to the most difficult thing about my diagnosis or my treatment.
Losing my hair was a small, inevitable detail, the price of which pales into insignificance when I think of the future it is designed to buy me. That’s the thing about cancer – you find opportunities to suck it up and look on the bright side in pretty much every situation. Including being a baldie wee woman…..
And that’s all I’ve got to say about that.
I’ll leave you with a song (sorry, I could only find an audio version) and promise that we’ll catch up again soon,
Love you all lots, like jelly tots
*Top tip: don’t google stuff when you’ve got a freshly minted cancer diagnosis.