Tag: hair loss and cancer

Breast cancer lesson 176: a cancer diagnosis brings clouds, but it doesn’t have to block out the sun

On By Jackie ScullyIn Baking, Chemotherapy, Moving forward, Reflections on cancer3 Comments

There is something quite sobering about reading back over my diary from last year (I only write a line a day but, in some cases, that’s enough to conjure up some pretty strong images) and reflecting on the entry for 21 February 2014.

Sitting down to write last night’s entry (I cooked for friends, so it was more about wine and a cake that accidentally resembled a boob than it was morphine and NHS mash) I knew it would be a world away from this: ‘Short in terms of length, but long in terms of getting the cancer cut out of me. Boob off, tummy out, boob on. Humour can get you through a lot.’ (Ok, slightly more than a line, but you get the picture.)

You could say it was the most memorable day of 2014. But, with the quantities of general anaesthetic involved, it was also among the most forgettable. One year on, I think of it as the day I lost a boob and found myself, the day that reminded me of just how fragile we humans are and a day that taught me that life is too short to spend it among the clouds, when there is blue sky all around.

The cloud metaphor for me is a strong one and one that I saw neatly captured on a mindfulness animation the other day (I am doing a mindfulness course currently, but that’s a whole other story). Imagine a bright, clear blue sky, a sky that is calm and uplifting (sounds like a good sky to me). Then imagine that sky filling with clouds (of the light and fluffy and grey and stormy kind). These clouds represent our thoughts, helping to block out the blue sky with imaginings that are often far worse than the reality that follows. The secret in life is to remember that thoughts are just clouds. They drift in and out, they don’t last forever and, while you may look at them and see them as colouring your day, your mind can (just like a plane climbing through the sky) break through that blanket of grey and find the blue sky again (it’s always there, but our thoughts often make it harder to find). A cancer diagnosis will always bring with clouds, but it doesn’t gave to spell a change in the weather.

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It’s hard not to see the blue sky when you’re celebrating a year being cancer-free! How to mark such a significant first anniversary? With another first of course. This time in the form of my first haircut since the pre-chemo pixie. Goodbye natural but Frodo-like locks and hello beginnings of something I might one day refer to as a style.

This is where is was before the chop:

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And this is the ultimate aim:

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Bit more hair, bit less forehead required!

The experience itself was lovely. Conditioner (my hair rarely needs washing let alone conditioning now), a hair brush being passed through my short little locks and the feeling of someone else taking charge of my wild look was a real treat.

But that’s not all. Friday was dinner and laughs with a great friend (something I am doing more of now after reconnecting with lots of people last year). And, Saturday was a day in the kitchen surrounded by proving bread, homemade pesto and a white chocolate bombe.

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These last few days have been a celebration of the things I love to do, my way of thanking my body for surviving eight hours on the slab and coming out smiling – and thanking some of those around me for coming along for the ride. And the great thing is, my stomach is flat enough to not feel guilty about having a second slice of cake for dessert.

So, whatever you’re doing today, I invite you to look for the blue sky (difficult in the UK, I know). Acknowledge those clouds, but acknowledge that they don’t have to define a day, but can actually make the blue sky even more vibrant.

Breast cancer lesson 147: Why I won’t complain about knotted hair again

On By Jackie ScullyIn Chemotherapy, Happiness4 Comments

One thing I really miss about having no hair is the hairdresser’s chair. I don’t miss the expense, or the fact I don’t have much glamorous chat (although I can hold my own when it comes to the latest on X Factor). I just miss the me time, the head massage while I’m having my hair washed, the ‘just-stepped-out-of-the-salon-you’ll look-like-this-for-five-minutes’ effect and the fact that, for at least 40 minutes, my image is in someone else’s hands. (I also miss the tea, the biscuit and the chance to read issues of Heat and Hello).

In truth, I have actually been to the hairdresser once since my number two back in April (although even that did not count as a proper appointment). Duncan treated me to a trip to the barbers (for him to get his haircut I hasten to add) on the way to a wedding last month. I remember chuckling to myself as I watched Duncan get his 10 minute clip, thinking that even in a barbers, I had less hair than everyone else. Thank goodness I had my hat on, so that they couldn’t see my ‘baby-like baldie’ look. Needless to say, I won’t be accompanying him again any time soon. It wasn’t much of a date :-).

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I have discovered, however, that you don’t need a hairdresser to give your head a bit of pampering. You just need a ‘New’ bar from Lush. This red soap-like bar (that actually smells a bit like Christmas due to the cinnamon content) is apparently the answer to quicker hair growth. Whether or not it actually lengthens my locks remains to be seen, but it feels lovely to get lathered up and, with 80 washes per bar, it’s a pretty cost-effective pampering activity. I have heard that there are other shampoos that can prove useful in the hair growth department, so if you have had any success with a product, do let me know. I haven’t, however, heard of one that ensures your hair doesn’t grow back grey. It is hard to tell right now, but there is a lightness to it. Am hoping for blonde – or a good cut and colour before too long.

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Of course, the shampooing has made the fluff I call hair stand to attention a little bit more, so I am sporting a bit of a chicken look today. I have been told that it is best to go au naturel and leave the hats at home to help encourage growth, so London had a good look at the fluff today.

With its ‘first-shampooing since April’ moment, Sunday was another of those mini milestone days I have been keen to celebrate. I am sure it won’t be too long before I enjoy my first hairbrushing day and even my first haircut. Life seems to be flying by at the moment and the idea that active treatment will be over in two weeks amazes me.

On the subject of haircuts, now I have fluff, my thoughts have been turning to post-chemo cuts. I feel lucky that I actually like short hair and get to experiment with all the styles I have also avoided (through fear of hating them and not being able to stick the hair back on). When you’ve hot no hair, having something to call your own is pretty exciting – although I know I have many more months of the GI Jackie look before anything resembling a style makes its way onto my head.

The style I do fancy is something resembling the look Brody’s wife opts for midway through season one of Homeland (yes, I appreciate I am miles behind). It’s a pixie with a longer bit on top (click here for a quick peak). For now, it’s just a dream staring out at me from the TV screen. I can’t wait for the day when I can call it – or something quite like it – my own! If you’ve seen something you think might suit me (here’s a quick reminder of the old Jackie look – or check out my a twitter handle, which is slightly more forgiving), please send me a link. When it comes to making a final decision, time is something I have on my side for once.

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Of course, what I am not missing is having another appointment in the diary – I have enough of those to keep me busy at the moment. It was back to the hospital today – via a wonderful lunch with an old friend I haven’t seen for about 14/15 years – for the next radiotherapy blast. Highlight of today’s speedy appointment was the moment when the technician said: ‘now, if you’d just like to lie like a big rock or something like that, this would be a lot easier.’ I know I had doughnuts for dessert, but a big rock?! Really?!

As an aside, if there is someone you haven’t contacted for a really long time, why not make September the month you get back in touch. As someone who is now saying thank you to all those who have touched my life over the last three decades, I highly recommend it. Now is the time to say what you mean and tell the people that matter just how valuable they are.

Back at home after blasting number five, there is only one thing I want to do – and that’s get the shampoo out again. Let’s hope all this washing doesn’t wash it off.

There’s one thing for certain, I won’t ever complain about knotted hair again.

 

Breast cancer lesson number 105: What the chemo consent forms won’t tell you!

On By Jackie ScullyIn Chemotherapy4 Comments

I have made a discovery. There are certain chemo side effects that don’t appear on factsheets and hospital consent forms. That’s not because they don’t exist, but because patients and consultants alike would have to endure a certain amount of embarrassment to reveal them.

They may not be groundbreaking and they’re certainly not on a scale of peripheral neuropathy or fatigue. But, I believe any side effect that brings about a physical change (embarrassing or otherwise) should be noted down so that a) we don’t all think we’re bonkers when it happens and b) we go into the entire process knowing there might be a few laughs along the way. So that’s what I’m about to do.

Before I begin, I think I should start with an apology, particularly to my loyal male readers. The following post may take you to places you’d really rather you didn’t know existed. There is about to be what one might call an element of oversharing. Trust me, it is not indulgent. It is medical. While I think it wrong to apologise for the route I am about to take, I can confirm that I will be containing it to a single blog post, so you don’t have to concern yourself with a repeat performance. Who knows? You might just find it funny.

I think it is fair to say that I’m not surprised certain side effects do not get a public airing. It takes me back to my hip surgery days. I remember waking up from the operation to find that my nether regions had been dyed a rather peculiar shade of purple. It was also a rather permanent type of dye, which meant I had to live with my alien-like hue for quite a while before the colour grew out. I had been prepared for the pain, the discomfort and the lack of weight bearing. I had not been prepared to laugh every time I took a shower.

Thoroughly amused by this turn of events, I raised the point at a focus group about patient care as a way of demonstrating that even the smallest of details are worth mentioning to help people deal with recovery. The patients all nodded in agreement as if reminding themselves of the discovery. The nurses laughed. And the surgeon? Well, he explained that they must have been out of the orange dye that week!

I am afraid to say it is this same region that has triggered my search for the secret chemo side effects everyone has, but no one dares to declare. Having never had a Brazilian wax, I was rather intrigued at the possibility of losing my hair on areas other than my head. But, I have to confess, it brought with it a rather unusual problem. Without being too crude, it seems the hair does help in a directional sense and its absence means you have to be vigilant (particularly if you have a tendency to crouch in public loos). Initially I thought it was just me, but having mentioned it to a few select ears (and done some rather entertaining Googling), it seems I am on to something! Now why didn’t the oncologist mention that when he was telling me about coping with hair loss! It may not warrant a whole fact booklet, but I think it deserves a paragraph. And, as an aside for women who trim regularly, I would urge you all to stop.

On the subject of hair loss, I think it strange that the advice tends to focus on the hair, eyelashes and the eyebrows. What about nose hair?! While losing the hair on your head is not to be recommended (unless you really do like the idea of trying out every short style you never dare attempt), it is manageable. Losing the hair in your nose, however, makes it look like you are dining on a diet of curries and hot foods.

And then there’s the growing back bit! While I am yet to enjoy this rather hairy experience, I am led to believe that the hair doesn’t always remember where it’s supposed to grow. I have heard of people shaving their big toes and not their armpits!

Why is it that everyone goes on about Epirubicin and the dreaded ‘pink pee’, but nobody talks or writes about Docetaxel and the ‘sweet pee’? I’d take coloured pee any day over something that smells like an overstocked sweetie store. For those of you about to embark on this taxing drug, you have been warned!

Even products designed to alleviate some of the more well-reported side effects, such as hot flushes, don’t offer up the full picture. I have been wearing the Ladycare magnet in my knickers for a week or so now in an attempt to get a good night of sleep. I am not sure it has reduced my sweats, but it has managed to attach me to everything from my dessert spoon to my door keys. Thankfully a kind friend warned me of this, so I wasn’t too alarmed when it happened for the first time. I don’t really like the idea of being joined at the hip with all metal items in the neighbourhood.

I should also mention that there are also positive side effects that I would have loved to have been told about upfront to balance things a bit. The consent form should say: ‘by signing up to this course of chemotherapy drugs please be advised that your skin will become silky smooth and soft.’

I should probably stop here before I lose all my followers. But, let me leave you with a few final thoughts. To all medical professionals out there, fear not the embarrassing, blush-inducing side effects! If we’re going to sign off a seven-page consent form, it is best to make it thorough! And to all cancer patients, please open up about those secret side effects (post here or make your oncologist blush).

Because, chances are, the person sitting next to you in the waiting room is experiencing them too.

Breast cancer lesson number 81: The happiest people don’t necessarily have the best of everything; they just make the best of everything

On By Jackie ScullyIn Chemotherapy, HappinessLeave a comment

Jogging (with a bit of walking) as I was around Greenwich Park this morning, I was reminded of a little bit of good that has come from the bad that is a cancer diagnosis.

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I may be missing a few lymph nodes, but in extracting them all down my right side, they also did me a rather nice favour. They took my sweat glands too. That means no matter how hot I get (admittedly there wasn’t a huge amount of sweating going on this morning), I will always feel as fresh as a daisy – albeit only on the right. And, before you ask, the left side doesn’t compensate by giving me a good drenching!

Ok, so it might not be a fair trade when you think of the destruction caused by the cancer itself. But, you won’t hear me complaining. In fact, there are quite a few things I like about my post-cancer body. So much so that I feel part of me should feel quite grateful.

While I may have to live with a hip-to-hip scar across my stomach, the flat result really is the tummy of my dreams (and the scar is shaped like a smile rather than a straight line). Now I just have to keep it that way!

The hair loss may be temporarily (although if my armpit gets a blasting from the radiotherapy that could spell an end to right side armpit growth too), but it certainly is low maintenance. The thought of having no leg hair (the last to go I hear even though I wish it were the first) is actually quite exciting and the only bits I don’t want to part with (now the hair is a distant memory) are my eyebrows and my eyelashes.

And, dare I say it, my man-made boob is pretty realistic. The only problem is, it is already growing (even though the rest of my body isn’t particularly), so I may have to have weigh up my options with the surgeon if little becomes large over the coming months. The natural left one just can’t keep up.

Most importantly, however, I have a newfound respect for my body and the bits that do (and don’t) work. In the park today I jogged further than I have in a decade and it felt good. Even something as insignificant as painting your nails feels like a treat, now I set aside time for it (and don’t apply it while trying to multitask and end up taking it all off again).

This period has taught me that if you want to help others and give back to the world, you must first help yourself.

I know cancer has the power to challenge my life again in the future. That’s why I’m going to give my body the time it deserves now, so it will always have the energy to fight back. 

Breast cancer lesson number 77: What happened when the wig went to town (with me in tow)

On By Jackie ScullyIn Chemotherapy5 Comments

Today, I introduced Suzie to the world (for anyone not familiar with my furry wiggy friend, you can find out all about her in lesson number 57).

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Suzie did well. I am not sure we will make the best of friends (although I am trying) and I doubt very much that she will be accompanying me on many adventures over the coming months, but for her ability to make me blend in and mask the fact I have toxic drugs flowing through my bloodstream, she does deserve a gold star (or maybe just a nice brush!).

It’s amazing what a bit of acrylic can do to make you feel quite self-conscious. Strangely, while you could argue she makes me look more ‘like myself’ than I have done in weeks, I have never felt less so. I guess ‘like myself’ is now what lies beneath, not the pixie cut I left behind on the salon floor a fortnight ago.

When I’m in my wig, I feel like I am pretending to be someone I’m not and I am afraid of being found out. This is not helped by the fact Suzie doesn’t actually move naturally and makes me look a bit like a Wallace and Gromit extra than a real well-coiffed person. I feel like the hair is an act, when the hats and the baldness are now part of who I am. Suzie is also like a hot hairy shower cap (although I am told she’s pretty convincing) and, quite frankly, who wants to walk about town in one of those?!

To try and get used to Suzie, I tested her out on the nurses at the cancer day unit first thing (I had planned to put back-up hats in my bag, but left them on the sofa, so it was hair or no hair). It felt like a safe environment given 80% of the hair in there is probably acrylic. The nurse flushing my PICC line didn’t even blink, but I am not sure she recognised me, even though we laughed all the way through my blood test last week (when I was sporting a blue hat).

I am delighted to report I kept my hair on throughout the dressing change and the following journey into town (although at one point I had a burning desire to whip it off). I did nearly dislodge her once when taking off my scarf and I looked a bit like I’d been dragged through a hedge backwards by the time I got to my front door (thanks wind), but she did hold her own. And, for that, I will be forever grateful to the lovely Suzie.

Back home and back to bald and I couldn’t be happier (never thought I’d ever say that)! Even Duncan is starting to come round to the idea of me having less hair than him. They say blondes have more fun. I am starting to disagree.

While writing this post, I typed ‘bald quotes’ into Google (as you do!) and just have to share the quote that popped up when I did: ‘experience is the comb we receive after we’ve lost our hair’. I say bring on the comb, because my hair’s coming back…

Breast cancer lesson number 66: Always look on the ‘brighter’ side of life

On By Jackie ScullyIn Brighter Life List, Chemotherapy, Happiness2 Comments

What better way is there to spend an Easter Saturday than up a cliff on the Dorset Coast path? When the sun went in it was quite bracing, but with the wind on my face and running through my tiny strands of hair, it was a wonderful reminder of all that is beautiful and wonderful in the world.

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Standing on a cliff with no hair is number 17 on my ‘brighter life list’. I still have hair around the bald patches (although a lot less after my latest shower), so it doesn’t quite score me my first tick on the list, but as a dress rehearsal, it was pretty exhilarating. If you are ever presented with the opportunity in your life (and I hope it has nothing to do with illness), I would encourage you to get yourself to a coast path – and fast!

If today didn’t remind you of how happy you are to be alive, then make sure tomorrow does. My brighter life list is about seizing the day and not waiting for happiness to find me. I’ve spent too much of my time wishing my life away. Now I want to cherish every moment.

It’s time to stop dreaming and start planning.

Breast cancer lesson number 57: How to keep your hair when all about you are losing theirs

On By Jackie ScullyIn Chemotherapy2 Comments

Cancer opens doors to rooms within hospitals that you would never know existed. Tucked away in the Orthopaedic Centre, with a corridor for a waiting room, the Orthotist’s office is one such place.

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Such was the secretive way in which this appointment was booked in the first place – the man who left a message on my phone requested I come to ‘patient appliances’ for a chat – I wasn’t even sure it existed myself. Why should an NHS wig referral appointment be surrounded by such mystery? And should a wig really be categorised as an ‘appliance’? Most appliances I know come with a plug, not shampooing instructions.

Sat next to a man with a walking stick, I started to imagine what might happen behind the appointment room door. And, I am rather amused to report that I will actually never know. This is not because I missed the appointment, but because my session happened with a wig fitter in the end, not the elusive ‘Orthotist’, in what I can only describe as ‘the wig cupboard’ next door.

The wig cupboard was like a hairy version on Narnia. Packed away in this little room were piles and piles of acrylic beauties waiting for their turn on my head. Having parked myself in the hairdresser-like chair, it hit me that I hadn’t really considered what style I might like to replace the little pixie to which I am now rather attached. Of course, Duncan requested a long, brunette style. (Not sure now is the time to request an upgrade that is not even close to my original colour or length, but you’ve got to admire him for trying!).

I needn’t have worried. A quick flick through the catalogue (NHS wigs may be free, but they are actually provided by a private company, so are great quality), was drawn to a pixie-equivalent cut in a spring honey colour. Her name is Suzie and I think I like her! She only needs washing once a month (with Johnson’s baby shampoo) and, apart from the fact she is very hot when combined with my full head of hair and a wig cap, I think we might just get along nicely.

I love the fact all wigs come with a personality. My head was turned by Faith, and I thought Sylvia would be worth a go, but Hayley, Kirsty and Linda didn’t get a look in. Maybe Suzie should become my new alter ego, not just my bald-headed disguise?

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Just for Duncan, I did try Brunette Scully for size (I am a bit shallow though as I dumped her without even asking her name). I am not sure the dark-haired look is for me, but am happy to experiment over the coming months. If you have any suggestions (pink, blue or otherwise) please do post here. I am only planning on going through this hair loss chemo thing once, so I may as well make the most of it.

So here is Suzie. Blink and you might not think she is anything other than a slightly longer version of my current cut. I need to play with the styling, but she’s pretty convincing for a bit of acrylic.

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I’m not worried about losing my hair (although I think I would be slightly alarmed if it starting coming off in the middle of town). I’m planning on embracing my baldness and making every day a mini-makeover day, with scarves and hats to match. But, for that one day when I might just want to look in the mirror and escape the thought of the chemotherapy drugs running through my body, there’s Suzie. And just knowing I have an alter ego to rely on makes me smile.

The big question is, will Duncan know the difference when he returns home from work this evening?

Breast cancer lesson number 46: When you’ve got nothing to lose (except your hair), go for it!

On By Jackie ScullyIn Chemotherapy3 Comments

I have a challenge for you. If there’s anything in your life you’ve always wanted to do, then find the time and the space to do it – and soon. Put it off no longer. I’ve just been for the shortest haircut of my life and, I have to say, I feel totally liberated. I’ve always wondered what I’d look like with a pixie haircut, and now I know. And, you know what? I wish I’d done it years ago.

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Ok, so having a pixie cut fours days before chemo may not sound brave or overly outrageous. After all, it was always going to look better than bald. But, having had a rather chequered history with anything shorter than a graduated bob, taking it off before cancer gets its hands on it was still a big decision (people forgive the cancer, but I think they’re less forgiving about elective style changes). This is something I decided to do, not because I wanted to make a statement, but because I want to keep the strands falling into my sleep cap to a minimum.

The last time I had hair anywhere near this short I was eight. Let’s just say it was forgettable. The local newsagents kept referring to me as ‘boy’ and, on a school trip down a mine, the guide asked me – otherwise known as ‘the lad’ – to assist in a demonstration. Sadly, at the beginning of the 1990s taking (and developing) photographs of virtually anything was all the rage, so there is a little too much photographic evidence of my basin look. I thought I’d never go back. I am so glad I did.

As my last hair appointment for more than six months, it was pretty special. Delighted that I have at last let go of the trusty bob, my hairdresser was visibly excited at the prospect of taking even more off. Getting an ‘it really suits you’ from the guy who has been cutting your hair for years – not to mention a quick head massage and a cup of tea – and then watching as his colleague complemented him on his snipping skills, is not something that happens every day (or even once in a decade for me). It felt good.

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Hair, we’ve had a good 32 years. I did once think you were a bit rope-like in consistency, and longed for a plait that didn’t look like it could moor a boat. I’m not sure the obligatory perm in my teens was a good idea. Growing my hair to the point at which I could sit on it was a bit misguided. Thankfully, the basin fringe was just a phase. And, having a four-hour trim with a hairdressing apprentice while at university, only to discover I had just 2mm less hair and roots dyed-in (can’t blame the apprentice, it was free) was a low point. But now, I appreciate you more than ever. I like your strength. I like the fact you’re a little bit of me. And, I hope that whatever grows back will give me as much pleasure – or at worst amusement (it could be grey, it could be baby curls, it could be me all over again).

While I felt a slight sadness knowing that I couldn’t book another appointment, and that the next time I would be here would be to let my hairdresser shave it all off (once the clumps start falling), I also felt a real boost. I’d had the confidence to do something different. If you don’t change a thing, there’s nothing to see.

They say if you’re not living on the edge, you’re taking up too much room. I am ready to step out of my comfort zone – as long as I can bring a cushion when the edge occasionally becomes the sharp end!

This is one hairstyle that won’t be growing out. This one’s going to fall out. Wish me luck!