Tag: hair loss and chemo

Breast cancer lesson 134: Get ready to graduate. Chemo is one test you will pass

On By Jackie ScullyIn Chemotherapy4 Comments

August 8 will forever be known as the day I officially finished chemo.

Unlike most other milestones on this cancer journey, this day comes with no medical-related strings attached. No needles, no toxic cocktail being pumped into my veins, no boob job. Just me at the end of a three-week cycle NOT sitting in a chemo chair. That makes it pretty special.

How did I celebrate this momentous occasion you ask? I went to the hospital of course! This time, however, it was for an arm measurement as part of the Lymphoedema clinical trial and the last of my wonderful aromatherapy treatments courtesy of Dimbleby Cancer Care. I baked some flapjack because I was visiting the Cancer Day Unit for my massage. But, that is where the similarities end. 

As the end of a three-week cycle, you could be forgiven for thinking that I might now be symptom free. Sadly, the cumulative effect of chemo means that bits are still falling off – and may continue to do so for quite some time. It feels a little cruel that at the time you’re recovering, you can actually start to look a little worse. But then, I don’t think chemo likes playing by the rules – hence the fact we all have a different experience going through it.

With a break in the cycles at last, I thought it would be fitting to take stock and look at the aftermath. Basically, what’s left and what’s a little bit wonky. Here’s the damage (so far):

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  • Head: arguably still bald, but now sprouting what I call ‘chicken fluff’. It’s soft like baby hair (another reason why I liken chemo to being reborn). Not sure on the colour yet, but I’m hoping it isn’t grey. These pictures hopefully give you a glimpse of the fluff – although I do appreciate the lighting makes me look a little like an alien! 
  • Eyebrows and eyelashes: clinging on for dear life still, but fading fast I fear. People do say the eyebrows are the last to go and it looks like that may be the case. I do feel lucky though because the combination of lighter hair and glasses does make it hard to tell if they are there or not. I am sad I can’t wear mascara (my one or two lashes would look a little weird if I highlighted them)! 
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  • Other hair: why is it that the leg hair is the first to reappear? As if anyone wants that back! I have heard that if you wax it early on, it may forget to grow back. If you can vouch for this do let me know before I rush off to get them waxed! The arm hair, on the other hand, is now falling off (having thinned throughout). Everything else is still pretty much absent (oh, nose hair, my runny nose misses you). I am watching my big toes carefully as I have heard they can become a bit Frodo-like in the post-chemo days.
  • Nails: Sore nails are really not pleasant. If you tap them on a hard surface (I did this once and now try to avoid at all costs) if feels as if they are coming off. They remain painted in blue and pink, but the last time I reapplied the colour, there was a lot of discolouration and my big toes were black. Thank you nail varnish is all I can say. At least this is something that can be masked.
  • Hands and feet: I have separated this out from nails because the key side effect I have been left to enjoy is peripheral neuropathy. This means I get a tingling in my hands and feet and the numbness/reduced sensation in both is very odd indeed. I can live with it, but I really hope I don’t have to.
  • Weight: A 2kg increase over seven months is a result in my book. Now just got to get rid of the steroid hamster cheeks and lovingly protect my flat-but-bulging-a-bit stomach.
  • Tastebuds: back in the game and currently devouring some homemade bread. Bread has such a subtle flavour, it really isn’t worth eating when the tastebuds disappear. I am certainly making up for it now (although ever mindful of the point before).
  • Mouth: ulcer free and no white tongue. Whoop! 
  • Liver: survived! Thank you liver. I need you.
  • Hot flushes: controlled slightly by the Clonidine (I can increase the dosage, but am not at the moment), but still a pain at night. I do love the sunshine and the summer, but think the autumn weather may help.
  • Skin: silky smooth and slightly tanned (for the first time in about a decade). It does feel as if I have been regenerated. Still on the factor 50 and think I may be for the rest of my days.
  • Fatigue: I am not sure whether this is due to the drugs or the general lack of sleep caused by the Zoladex.
  • Brain: in tact, just. I have been known to put the plates in the fridge (along with the cereal). But, I think I may have done that in the pre-chemo days, so I don’t really have any excuses.
  • Positivity level: still smiling!

Everything else is still in tact (or yet to be investigated)! I certainly won’t be scratching the surface to find out.

Am I happy to have survived four months of toxic drugs without being hopsitalised and spending even one day in bed. Absolutely! Would I go through it again? Not this month – and hopefully never again! I was reading only the other day that scientists are predicting that chemo will be obsolete within 20 years (due to a project looking at the genes responsible for cancer). To think that people may one day be cured without these drugs is a wonderful thought.

When things stop falling off me, I will be uploading my cancer kit list (along with my top tips and reflections on chemo) to help all those facing sessions in the chemo chair. One thing I will say now though is that chemotherapy doesn’t come with a textbook. If it did, we’d all be reading it. There are things we can all do to prepare, but it is far better to wake up each day and meet each challenge head on than worry about the challenges you may never have to face. Easier said than done, but it can be done!

There’s no mortarboard, gown and certificate waiting for this graduate – just the satisfaction of knowing I am out the other side (and I have good skin)!

I got there – and so will you.

Breast cancer lesson number 93: How to face cancer with confidence

On By Jackie ScullyIn Chemotherapy, Happiness2 Comments

I think it would be fair to say that my make-up routine is less of a routine and more of a lifelong period of experimentation. I have the creams, the mascara, the eyebrow pencils and the obligatory make-up bag, but it seems that no matter how much stuff I apply to my face, I never look like I have any on. Some may call this skillful. Sadly, there is nothing skillful about it.

Whether or not you know your primer from your restorative lash treatment, when you’re undergoing treatment that dries your skin and steals away your eyelashes in the night, make-up does have its uses. For me, it’s not so much about hiding what’s happening to me, but more about giving me back the bits that make me smile. A hat can hide the lack of hairdo, but I do quite like to see some eyebrow when I look in the mirror.

In an attempt to help me reclaim my face, friends, family and medical professionals have been quick to send me top tips, hints and product recommendations. In the creams department, for example, I am sorted – so much so I’m surprised I don’t just slip right out of my clothes! Having diligently filled the bathroom with everything from Gimme Brow to Brow Zings on the make-up front, however, I do feel like in danger of looking more like a pantomime act than a publishing professional. Painting on eyebrows? I’d rather have a PICC line flush thanks.

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Enter Look Good, Feel Better (LGFB). This amazing international charity offers free skincare and make-up workshops for those coming to terms with the visible side effects of cancer treatment. With volunteers from the beauty industry (who better to teach you about wig care than a film make-up artist?), each session is a masterclass packed with trade secrets and handy tips. In two hours, you get a 12-step make-up routine and all the branded goodies to match (designed around your skin tone). And, even though you do have to sit in front of a mirror for an extended period, you do get an awful lot of laughing to go with your lipstick and eyeliner.

There are many things in life I never thought I’d have to worry about. Matching my foundation so that it blends in with my bald head is one of them. Now, however, I don’t just have the concealer, I know where (and most importantly when) to apply it. I can use green primer without looking like Kermit the frog and can advise you on which eye cream will make your bags glow in certain lights (not a great look for a wedding). I will also never use my eyeliner in the same way again. While ‘looking good’ may be pushing it, I left the session looking a whole lot better and, it felt great. To ease you in, I am only posting a photo of the goodie bag today. I need a bit more practice before I share my new eyebrow-shaping skills with the world and I’d rather not scare you off.

For the first time in my life, I have three amazing beauty secrets to share! First, book on a Look Good, Feel Better event today (they are extremely popular so click here to find your nearest location). Second, Macmillan Cancer Support does a really useful guide called Feel More Like You, which provides expert advice on skin, nail and hair care during treatment. And, lastly, only put green primer on the red bits, otherwise you might end up looking a lot worse than you feel! 

Of course, the one thing that a wonderful workshop such as this can’t do is account for nature. And, by nature, I mean the fact that I currently have a rather fetching mosquito bite plonk in the centre of my forehead. Perfectly timed for the filming of an exercise video tomorrow (oh yes, more on that soon)! That’s something no amount of make-up is going to sort.

Breast cancer lesson number 86: The secret to smooth summer legs

On By Jackie ScullyIn Chemotherapy, HappinessLeave a comment

Ok, so I appreciate the title to this blog is a little misleading. While I do have the secret, it does involve a few rounds of toxic drugs, so it is a bit of a hardcore way to solve an everyday problem.

That said, if you’ve got to endure chemotherapy, you’ve got to celebrate those perks. One whole summer with beach-ready legs is a good side effect – just a shame I won’t leaving the country to find sandy beach on which to air them. Chemo, there aren’t many things I thank you for (especially not the ulcerated tongue that is currently making it difficult to talk). But, I thank you for this.

Interestingly, unlike the dramatic overnight hair loss I experienced with my hair, my legs have been a little quieter in their elimination of stumble. Imagine my surprise this morning then, when I discovered their silky smoothness. The great thing is, I tend to be a bit slack with my hair routine over the winter, and now I can be just as slack with amazing results. I have heard that chemo does wonders for the skin. I am now starting to believe it.

The secret to keeping your eyebrow hair and nostril hair while on chemo is one I would be keen to discover. While I have embraced by baby-like baldness and my hair-free thighs, my eyebrows have started to thin in a noticeable way and losing my nostril hair means I don’t need a hot meal to make my nose run!

Chemo, let’s make a deal. You can keep my leg hair and my armpit hair (and pretty much all my body hair), but in return would you please return my head and nostril hair and my eyebrows. If not, can you make sure we have a hot summer so I can make the most of the hair loss while it lasts. Thank you.

Breast cancer lesson number 83: Dare to bare!

On By Jackie ScullyIn Chemotherapy4 Comments

Today I conducted an experiment on behalf of every woman currently grappling with the physical effects of cancer. I left my hats and my ‘fake’ hair at home, threw caution to wind and started out on my commute across the capital with my bald head in full view.

For me, it was bold (or bald). London, however, with its preoccupied commuters and eclectic fashion sense has a great way of looking in the opposite direction. With the exception of a few pitying stares and a couple of double takes, I was just another person navigating the crowds to get to my destination. I didn’t want a seat. I didn’t want a hand. I just wanted to blend in. And, that’s exactly what I did.

While I do think a ‘new boob on board’ badge may have helped me avoid the elbows of those fighting for a bit of personal space, it was a fairly pleasant experience (as much as a commute across London at rush hour will ever be). It also reminded me that most people have so much to think about, that the potential plight of a stranger across the carriage really doesn’t register.

So, my advice to all you lovely ladies currently without lovely locks is dare to bare! Bald can be beautiful and pretty liberating. I shall leave you with the words of Larry David (slightly amended in itals): “Anyone can be confident with a full head of hair. But a confident bald man (or woman fighting cancer) – there’s your diamond in the rough.”

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 62: How to bear losing your hair

On By Jackie ScullyIn Chemotherapy3 Comments

Today was supposed to be a quiet day. Working at home with just a cup of tea for company, the day was there to be filled with sunshine and strategic thinking. Turns out cancer had other ideas. Today is a day I will never forget.

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I thought hair loss would be a gradual thing. There is, however, nothing gradual about scratching your head while pondering over a paragraph of text, only to be greeted by a clump of the stuff. And we certainly won’t be dwelling on what happened when I went to the toilet.

I thought I would find it amusing in some way. After all, while I had started to think it might never happen, I knew deep down it always would. I thought I was prepared for the emotions that came with it. But, the truth is, you can never really prepare for something like this. When hair you have known and loved is no longer on your head, but in your hand, there’s only one thing to do – have a good old cry.

As soon as the tears subsided, it was time to get practical. My hair (or what’s left of it) is too short to donate (if you’re about to go through this and have more than 17cm of hair, I would urge you to follow in the footsteps of this inspiring young woman Connie, who has just donated some bunches to charity). But, given I am not one to sit around waiting for something to happen (and I certainly don’t want to clog up the sink), I have already made my decision. It’s time to take back the control. It’s coming off, at 12.20pm tomorrow!

So, what started out as a quiet day at home is now the last day pixie and I will be together for quite some time. I think the hardest part is knowing that my hair may never be the same again. I’m not afraid to lose it (although there are a few marks on my head I am not particularly excited to see). I’m just worried that what grows back may be a new version of me that I may not like straight away. It may be better. It will probably be different. It’s an adjustment I never thought I’d have to make. And, now I am staring at a spring/summer season of baldness, part of me wishes I could just grab it from the sink and stick it back on. I’ve done the scarf shopping. I just didn’t really think I’d need to wear the scarf.

Every side effect that suddenly appears is a rather harsh reminder that, while on active treatment, you can’t get comfortable. You have to be prepared. Because, if you’re not, something will creep up and try to steal your happiness when you least expect it.

Tomorrow is head shaving day. Tomorrow I lose a little bit more of myself to cancer. Tomorrow is the day I may also be introducing my alter ego Suzie to the world (or not, so will be packing some fabric-based alternatives just in case).

Of one thing I am certain. With a trip to the office scheduled for the afternoon, tomorrow is going to be interesting! Wish me luck.

Think Duncan and I might be raising a glass to my mousey locks tonight! 

Breast cancer lesson number 60: Get your head in gear (but only with accessories that suit your face shape)

On By Jackie ScullyIn Charity, Chemotherapy3 Comments

I have a head for hats. This rather exciting discovery, made in a hospital consulting room of all places only a few days ago, is not one I think I would have ever made if it hadn’t been for a bit of chemotherapy-induced hair loss.

I think it’s fair to conclude ­– especially after revealing my current choice of underwear in lesson number 59 – that I am not a fashionable woman. Yes, I have followed some basic styling rules in recent years, I keep to my ‘summer’ colours and now own such things as matching accessories (I even have a copy of the What Not to Wear rulebook somewhere). But, it took me about 26 years to realise that I don’t look good in black and that necklaces aren’t just for special occasions. You wouldn’t believe I used to write a blog for a model!

It will come as no surprise for you to learn then that I have always been pretty unadventurous in the headwear department. Apart from a regular haircut (that has only recently developed into something other than a bob), my head usually gets treated to a bobble hat on Bonfire night and then a series of fluffy numbers throughout the winter months. And, if it’s very lucky, the occasional swimming cap (although I think my open water swimming days might be on hold for some time).

Faced with a spring/summer season of baldness, I jumped at the chance to attend a Headstrong session. Set up by Breast Cancer Care (although I think anyone undergoing cancer treatment can book one), these sessions are designed to help people make confident choices about everything from hats and headbands to scarves and hair accessories. Beyond the odd bit of fake fringe, the emphasis is less on hair (by which I mean wigs), and more on the fabrics and styles to help turn hair loss into a fashion statement.

I wasn’t sure what to expect as I loitered in the Cancer Day Unit waiting room. I certainly didn’t expect Breast Cancer Care’s answer to Trinny and Susannah and one of the most enjoyable experiences of my entire cancer journey so far. Armed with a cup of tea (naturally), I sat back in front of the mirror as two wonderful ladies tied knots on and around my head and dressed me in blue florals, leopardprint and velvet bows. We started with headscarves (I got a beautiful pink and white polka dot one with matching grey headtie to take home as a free gift), before moving on to scarves with hidden caps underneath, turbans, berets, beanies, soft hats, sleep caps, baker boy caps, bucket hats and pearl-effect hairbands. We covered all the seasons in about half an hour.

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The whole appointment was an entertaining voyage of discovery. For example, I learned that a wig cap is nothing more than a popsock for your head. I had visions of it being more a like a latex swimming cap, but no! I now know I look like a gnome in a turban and a milk maid in an eyelet scarf. Baker boy caps and bucket hats are a must for the summer and, when I put a Mandy hat on (one of my favourites), I look like an extra in a Poirot movie. Basically, I was just born in the wrong decade. And, it’s amazing what a thin headtie can do to dress a short pixie hairdo.

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With a couple of summer hats and headties on order – to add to my small pile of scarves and soft hats – I think I am ready for SS14. Maybe this will be my summer of style (if we ignore the fact I am highly likely to be bald for most of it).

Please don’t think I am cheating on Suzie (see lesson 57) by stocking up on soft fabrics and straw bucket hats. But part of me just thinks if I’m going to lose the lot, why try and cover it up with an acrylic equivalent (other than for relevant meetings of course)?

So, if you’re about to embark on chemo and would like a whistlestop tour through the wonderful world of scull caps, jersey turbans and faux fur hats, I would book a Headstrong session as soon as you can – and certainly before you start shopping.

Cancer may be going after my hair (or so my hairbrush tells me), but it’s not going to take my confidence with it!

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?