Tag Archives: confidence

Hair Today, Gone Tomorrow

In my montage the other day, I missed a crucial part of my transplant tale. A superficial, vanity riddled part, but crucial all the same. My hair loss and how I am coping with it. I have obviously been through this process before, I lost my hair in 2013 and again in 2013 (not a typo) and despite my initial fear, I enjoyed being something of a chameleon with whatever was on or off my head. If anybody had asked me in 2014 what I thought of my hair loss, I would say that it turned out to be far better than I had anticipated. Fast forward to 2015 and I do not know how I feel about losing my hair. I can’t decide. Trust me, indesicion is something I am familiar with.

It took a while, but I had fallen head over heals in love with my new curly hair. Had the transplant not happened, I was just a few months shy of reaching my goal of a ‘do reminiscent of Michelle Pfieffer in Married to the Mob, post husband’s murder. But that was not to be.

In an attempt to take control of the uncontrollable, I had a friend shave off my hair, a day after it started to fall out with the greatest of haste on Day +12. It happened that quickly. Some members of the Network told me to wait, for they thought there was a chance I wouldn’t lose all of it, but the thought of leaving clumps of my hair all over Tottenham Court Road was too much to bear. 

In two days, my hair went from full and bushy to a Number 3 crop.

Why a Number 3 and not a full head shave? Well, on the advice of the lovely Macmillan Support workers, alopecia needs a helping hand. In order to lose my hair with the minimum amount of trouble, I needed to keep some weight so that it could fall out naturally. As naturally as chemically induced hair loss can be. So there I was on Day +12 with less hair than I had on Day 0, but still with hair. You will note from the complication above, the slugs that make up my eyebrows went absolutely nowhere.

Over the next seven days, my hair quickly left my follicles and made it’s way to whatever surface I was in the presence of. A lint roll proved to be an invaluable tool during this time, especially for use on my beds, and don’t even get me started on the power of the Electronic Power Sweeper… Mamma Jones likened the situation to having a black Labrador in the house. The fact I enjoyed pulling my short hair out of my head marginally dulled how depressing it was to see evidence of a hair massacre everywhere I went. Hair today, gone tomorrow.

  

The whole process took eight days. Eight long days. I lost the hair on my head and another area of my body, but it remained everywhere else. It’s not growing anywhere else, but sadly, the beard, moustache and somewhat dastardly, my sideburns remained. That’s right, sideburns. Unlike events of 2013, I kept my sideburns and more strangely  than that, my hair line. To all intents and purposes, I was bald, bar circular line from my forehead round the back of my head (along with the side burns and a few stray hairs). It was a style that screamed cancer. Squarked it, actually. Thus, it was necessary to get those clippers out one last time to remove my hair line and some of the sideburns, not all the sideburns as I do not want stubble on my face. The side burn issue is a situatuon most unfortunate. 

  
Once I was bald, and able to hit the streets, I encountered another hurdle, a daily hurdle. What to wear? In 2013, I think I found baldness something of a novelty. I enjoyed wearing my collection of wigs. At times, I found it fun. I do not remember feeling as self conscious about it as I do now. I am finding that with or without a wig, I feel self conscious. It’s not a dressing up game. I imagine the world secretly pointing at me saying that is a bad wig, or laughing at the fat crease at the back of my bald head. Early on in this process, I went on a day trip to Tesco, naked as it were and found strangers either stared at me, smiled and tilted their heads at me or worst still, tried and failed not to look at me. Either way, I felt their discomfort tenfold. Since then, whenever I am in public, I want to cower. 

I very much wish I could just say “fuck it” and embrace my situation and play with it. Do not get me wrong, outwardly, I do vary between my wigs and baldness and leave the flat, but I am never not aware of it. The Afro wig I loved so much before, because it was so obviously not my natural hair, has become something like a nemesis. I am prone to exaggeration after all.

I’ll let you into a little secret, when one finds themselves without any hair, it doesn’t change them. My brain still works exactly how it did before and I enjoy all the same things.  If I am in the comfort of my own home, I feel whatever normal is. Hair holds no secret power to my personality. Well, it doesn’t until I look in a mirror and I am reminded that I now look like Shrek. Perhaps if my weight was not so unruly I would feel better, perhaps if I did not have to worry about the next transplant or my finances or my future employment, and everything else that keeps me awake at night, I would be able to not care about my baldness.

A relative of mind told me that I should wear my wigs to ‘feel pretty’. Feel pretty? Is that to say that I am not pretty without one? Has having cancer made me inherently ugly or just uglier? On the other hand, a friend of mine, on seeing me walk down a street with nothing on my head but my headphones, donning my Raybans and a healthy application of Ruby Woo on my face said I looked ‘swear word cool’. I don’t think he adopts the belief that femininity and beauty can only be achieved with a full head of hair. But, beauty is in the eye of the beholder and there are a lot of beholders out there.  

The truth is, I see neither cool nor beauty when I look in the mirror. Yesterday, all I saw when I wiped condensation from my bathroom mirror post shower was Martin Sheen emerging from the swamp in Apocalypse Now. 

It’s an issue. 

It’s not an issue unique to me. Well, maybe not the Apocalypse Now bit. I read an article in Vogue Online last week about just this thing, hoping it would help me recapture the confidence I once felt (http://www.vogue.com/projects/13262618/hair-loss-women-cancer-chemotherapy-alopecia/?mbid=social_Instagram). It didn’t. I do not know how it made me feel, like a fraud maybe. I’m making all the right noises, doing all the right things, but the fakery does not seem to be working as much as I would like. 

Until I am able to pull my socks up, I’ll gently stroke the prickles on my head and marvel at my dazzling collection of wigs. 

   

EJB x

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Fugly

Last week, I recounted a story where I accidentally flashed my left bosom at my nurse, which caused me some embarrassment. I did say this in the blog, but I was not embarrassed because somebody saw an illicit part of my body, I have myeloma for goodness sake, so that sort of thing really doesn’t matter, and hasn’t mattered for a long time. I was embarrassed because my well self, would never let myself get into that sort of situation. When I say situation, I mean, my well self, would never allow a stranger to see me in elasticated trousers, sans confidence with my booby hanging out.

Whilst I am aware that the body is just the body, I want and expect mine to look a certain way, in order for me to feel a certain way. My transplant, and if I am honest, aided by my eating ability on VDT, has zapped all comfort and confidence I had, away. I have become embarrassed to see people. A cleaner in the hospital asked me at the weekend whether Big Sister was my daughter… She just about summed things up.

I sit and hope that my transplant has temporarily banished my myeloma, whilst I sit and curse the fact that my transplant has made me feel ugly. Spending a fortnight in my pyjamas, slowly balding, looking grey, immune to weight loss, has done absolutely nothing to boost my confidence. Nothing at all. I do not feel 29. I feel old and irrelevant.

It seems strange that given the seriousness of my procedure and my illness, that I have found time to worry about my appearance, but I have. I am vain. Since I was diagnosed, I have worked with the changes imposed upon me, and made the appropriate concessions, but I have not been able to do that in hospital. There is no need for accessories in here. I have looked like a slob the whole time, and I cannot express how excited I am about getting dressed today. I’ll be putting clothes on and maybe a bit of make up, and a wig. Not quite sex on legs though. Not even, for I have not shaved my legs for 10 days. I thought the chemotherapy would deal with that for me, I was wrong.

I also thought that the Melphalan would do something else for me, it failed…. I am absolutely flabbergasted and disappointed to announce that I have not lost any of my VDT/VTD weight during my transplant. In fact, during the eight days I could not eat nor drink, I lost nothing. I thought weight loss would be my payoff for having to go through my transplant, I was almost promised it. I was wrong. Instead, I got to listen to a nursing assistant compare the size of a blood pressure cuff to the size of my waist. Thanks. I felt like a princess.

To improve matters, and by that, I mean to assist My Myeloma in its quest to turn me into a fetish, I have lost my hair again. Not all of it as I hinted above, just the majority of the stuff that had regrown on my head. In nearly all the places you do not want hair, my hair remains.

Oh, and for some reason I am leaving this place with some very dry skin. Just to top me off.

This was not the long spa break I pretended it was. I may have been given a fitness regime (on my request), had a number of alternative therapies and met with an inept dietician, but I do not feel cleansed.

What am I saying? Sexy, everything about me so sexy. I don’t even know why I got. I really hit the spot.

EJB x

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Wig Wam Bam

I have had a shaved head for two weeks now… I think I am coming to terms with it. It is certainly harder than I thought, especially because I am dealing with steroid associated weight gain and his friend, the double chin, but I am putting on a brave face and every day, well nearly, it is getting easier. It has to get easier because all my logic tells me that I am the same person irrespective of my hair. Sometimes though, the logic can get lost in the vat that is my mind. I still have my eyes though. That smile is still coming through, three days a week.

For the first week, I embraced the baldness. I believe I had to. I packed my hair dryer and my straighteners deep under my bed, I slowly learnt how little shampoo I need to use and I discovered the power of the comb. Try as I might, I cannot get away from putting a towel on my head after a shower. I tried. I know it is not needed. Men don’t need it, but I have used one for as long as I can remember and I feel naked when I am naked without it.

Part of me thought that if I had jumped to the wigs immediately, I would be losing this game. I would show weakness and I most certainly never want to show that. For that reason, I had to let the hair and the scalp be free. Again, my logic told me that using the wigs was not defeatist, but I thought it was, so I had to lay it bare. People needed to see it, people needed to see My Myeloma and most importantly, I had to know that I was strong enough to let people see My Myeloma. The general public don’t know what myeloma is, so for them, they could only see my cancer. For I now look like I have cancer, well, apart from the double chin and the tummy and maybe the thighs. Hell, all of it, I am not particularly fond of my upper arms either, but what women is? I can read, I know what the magazines tell me to worry about. At least it is slightly easier to get a seat on the bus now.

So, last Tuesday, I bit the bullet, I ripped off the plaster and I took my test. I walked onto the 7s, with the head on show and I have to admit, it was nowhere near as bad as I thought. Like anything, the plaster didn’t leave a mark, it didn’t hurt, and it helped to heal a wound. If I had not done it, I would always wonder if I could and then I could never rest easy. I guess now that I have done it, I can rest easy.

After the day in my office, I knew I was ready for the wigs. Since this hair loss situation started, I have always said that I would have fun with them, and I can confirm that I am now having fun with them. I have six. The majority look nothing like my natural hair and this is the way I want it. I have spent over six months seeing people in the clinic with their wigs, the same wigs, day in and day out, and although I understand why people do it, everybody’s cancer is their own after all, I knew that route was not for me. Think what you want or say what you say about that, but I believe I am too far down this road to hide in something that makes me look almost identical to what I once was. It is gone and there is nothing I can do about that, and to get through it and deal with it everyday, I cannot try to recreate something that is dead. For me, for myself I mean and my personality, not for anybody else, dear readers, I see that response as defeatist. My Logic agrees. The variety is a challenge and I am embracing it. It enhances an outfit and I like an outfit.

As it turned out, the first day I wore a wig, I felt more self conscious than I did with the bald head. I announced to anybody I was having a conversation with that I was wearing a wig. It’s better to confront that elephant in the room. It was better for them and it was better for me and I am selfish. I was certain that everybody on the street, passing me in their car or on the bus were looking at me screaming ‘wig’ with their judgemental eyes. Hello Logic, I know this is not true, but that is what I thought. At least, that is what I thought until I regained control.

I regained control in a relatively mean way. I went into House of Fraser, not pronounced Frasier, to try on sunglasses that would go with my new crop. To keep you up to date with this story, I was wearing a wig and this kind of defeated the purpose of my trip. And so, without forewarning, I announced to the sales assistant that I was going to remove the wig and that I did, instantly. The look of shock on her face was priceless, and I realised two things, firstly that I was strong enough to deal with this and secondly, there is no way, no way, that this act will not go unrepeated. I loved her reaction. It is mean, but it gave me pleasure and I will take it wherever and whenever I can. My unsuspecting victims will just have to deal with it, for I have cancer and that gives me a free pass. The Mother F&%#ing ‘Roid Rage tells me so.

Wigs are strange things, one has to get used to the added heat, but it is Winter in April, which is making this side of things easier. One also has to get used to looking in a mirror more, because I wonky parting or fringe is a faux pas, I suspect that even Haemo Dad would know that. Oh, and the feeling of wearing a loosely fitted vice on your head all day. A vice or a tight hat. Everywhere I went today, I thought I was being ill mannered for wearing a hat indoors. Wigs get in the way like actual hair, they get matted in the wind, and at some point I will have to wash them. I am learning all of this. I could probably pass a test on it now. I bloody love a test.

Dedicated to Mamma Jones, with a few side profiles and pouts for her viewing pleasure, I give you some samples. By samples, I mean, me, Emma Jane Jones, getting used to my head. I guess it is not so bad…

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With this, my willingness to enjoy my baldness, and the confidence that brings, I thought I was coping well. Yesterday, however, my niece ran into my bedroom to show me the French plait Mamma Jones had just given her and it made me cry. It made my cry because I want my mum to be able to French plait my hair but I don’t have any for her to plait. I do not even have a parting. It was self indulgent but I couldn’t control it. It’s always going to smart. There is no escaping that.

In the meantime, I will wear my wigs or not wear my wigs and I will find new ways to like what I see when I look in the mirror.

EJB x

P.S. This may not marry, but all this superficial stuff about my appearance does not take away from a previous blog about how confident I am these days, because of My Myeloma, about whipping my baps out in your face. Don’t forget that. I am desperately trying not to.

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Retail Therapy

Cancer does not make you wise. That’s a secret we don’t like to admit to, but it’s true. Cancer does not mean that you stop making mistakes or the occasional error in judgement. I am fortunate, that I am practically perfect in everyday, but that does still leave some room for, you know, the occasional lapse in judgement.

It would be fair to say that I had a lapse in judgement last week. I knew it was coming. I had shaved off my hair and I was feeling weak. All so very weak. I needed a pick me up. I could feel it clawing away at my psyche, telling me that I needed to look better, but more crucially, that I could easily look better if only I invested a bit of time and money. The problem here however, is that I have no money. I do however have a credit card and my, do I know how it use it. It is also apparent that I have absolutely no self control. The excellent part about whatever came over me last Saturday afternoon, is that I did it all from the comfort of Mamma Jones’ sofa. No walking around shops for me. I can’t do that anyway. I have myeloma.

To be clear, ‘all’ means quite a lot of purchases with fake money. It is people like me who make this economy work. Cancer patients. Well, maybe not, I think there is a hole in my logic. We buy on credit and then have no hope of ever paying it back. In your face Barclays. In your face. Hello new stuff.

This week, there has been a steady flow of parcels coming to my front door. It has been lovely. Fake money and immense guilt aside, I have received, two pairs of shoes, two dresses, two skirts, a top, four pairs of earrings, two necklaces and a wig. There may well be the odd thing that is still outstanding, but only time will tell. Or Royal Mail.

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Just look how pretty it all is.

I know it is wrong, but I feel so much better. I know that all this stuff will vastly improve my quality of life. It makes me hotter than I was before, and I know that I have the ability to be hot, even with my current, generous display of scalp. This new stuff, is going to make you tell me that you are in love with me, because you are. I can sense it.

In short, the retail therapy worked. It worked in Pretty Woman didn’t it? She may have been a prostitute, but I have myeloma. I deserved it more than she did, but I only had a credit card to hand. The spree made me stronger. I have new stuff. And as my six year old niece told me today, I am so ‘fash-ON’. She is wise, all so very wise. Probably wiser than me, but I can be forgiven. I have cancer don’t you know.

And that is my cancer card played for the week. Or maybe month, if something else does not come along to upset me.

EJB x

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Liberated?

The day has come. The day I always knew was going to come has come. The day I never wanted has come. I have shaved off my hair.

I should probably be clear and say that my head shaved looks better than what I have been sporting for the last ten days, and that is in public. One can only imagine what Housemate was greeted with every morning (yes, if I got up before he left for work) after I had slept on the balding mess. The pragmatic side of me knows I had to take this step, if only to save my kitchen floor from becoming a carpet. I am thankful to the person who did it, finally. I will no longer wonder what I will look like with a shaved head, because I have seen it. I will no longer wonder, at least not for the foreseeable future, how long my hair has left because it is gone.

I have prepared and prepared for this moment, and I have tried to put it off for as long as possible, but the sad truth was, that today, it was too far gone. The cyclophosphamide, that I did not need, had done its job, well at least some of it, and the only way for me to regain control was to shave it.

The act of doing it was fine. I was with Big Sister. I was brave and I knew it had to be done. I do not feel brave now. I do not want to be brave. I will deal with my new look because I have to, my circumstances and my dogged determination to make the best of My Myeloma dictate that. I do not want to look like this. I have listened to and been appreciative of other cancer patients tell me that the experience is not that bad and they have felt liberated by it, but I do not want to feel liberated. Sure, I am going to save some time in the morning and save a bit of cash on hair products, but I do not want to look like this. My name is Emma Jane Jones and I have luscious long locks, that is what I recognise. When they went, I had a bob and that was fine. I don’t recognise myself today in the mirror. I have tried to not look in the mirror. My thoughts and my mind are the same, but the packaging is different and today, I cannot reconcile the two. I don’t want to look like this.

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The evolution of my mane.

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What is left

I don’t want people to tell me that I look good or that I can pull it off, because I know that I would look better if I did not have a shaved head. I would also be upset if people did’t say these things by the way. There is no escaping that fact. If I am perfectly honest with myself, at certain angles, let’s say 80%, I have a double chin. Said double chin cannot be hidden when one has no hair. The hair itself is quite thin, so for extra vanity points, there are clear areas of scalp. Hmmmm, scalp. If I was a blondie, this would not be an issue, but alas, I am far from blonde. I also have masculine features. It’s a true story and unfortunately, they cannot be hidden without locks either. I fear I look like Haemo Dad, but he has more hair. I am going to need to be on the ball with my makeup; runny mascara and lipstick crud at the end of the day will no longer be permitted. I am angry with myself for thinking it, but I know for sure now that I will have to win any boy over with my wit and my wit alone and that evidently does not go far. I don’t want people to feel relief that they do not have to be seen with me on their arm. In my life, I have been fortunate to have run my hand through some very soft short hair before, and I expected my hair to feel like that. It doesn’t. It feels like a mass of ingrowing hairs. Maybe it needs to be longer. The icing on the cake was the family dog’s reaction to my new ‘do. She just kept licking my ears and the area behind my ears. I think a Bischon Frishe my have a limited IQ.

With no make up, no filter, after a dose of thalidomide, I look like this:

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I repeat that I know why I have a shaved head and I know that I had very little choice in the matter. I also know that it will get better. I know my reaction to it will get better. It’s just one of those cancer related things that sucks.

I am vain, and my feelings about my hair are influenced by how I want people to see me. Despite my double chin and my masculine features, I liked the way I looked. I will have to learn to like this and I dread to think just how obsessed I will be about finding my new comfort zone over the coming weeks. New clothes are bound to be involved. Jewellery too. Perhaps some make up. As with everything else, I will not let it defeat me and I will find a way. I will find a way because I have to, just like everything else. I am just giving myself a moment to dwell. Dwell on the things it has changed and the things about me I will miss. Everybody will know I have cancer now. Well, everybody outside the London Borough of Hackney. Maybe it will make it easier to get a seat on the bus.

Everything will make sense again, and it will get off to a good start this coming Wednesday when my good friend Iana, who likes his hair more than I liked mine will be shaving his hair off for Macmillan. We were supposed to do it together and this had been planned since October, but I was a wuss and kept putting it off until I could no longer put it off. So, in short, to support me, he has decided to Bic his head. I personally cannot wait. The link to his Just Giving page is below, please dig deep. He’s had long hair, cut by his Mum since he was 13. Do not think this is a token exercise just because he is a boy. It is his armour too. Neither of us are celebrities doing this for publicity. We found our own inspiration. I should add that all previous donations have already gone to Macmillan. I swear.

https://www.justgiving.com/shavingmyhairwithEJBones/

Oh, and if you are still in two minds about donating. He made a video about us. It will win you over. It won me over. http://www.youtube.com/watch?v=8NtJ4RTVMPE

Apologies if I have previously posted this, I have tried and tried to remember whether I have, but I just cannot recall. Bloody drugs.

And finally, due to IT issues, I wrote this blog yesterday. I fear that the self loving through retail therapy will start today. I want to feel pampered.

EJB x

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Naked!

I was once shy.

I should clarfify this point, because I imagine those of you who know me and are reading this, would disagree that I have ever been ‘shy’. I was incredibly shy about all issues relating to my body.* My body is fat, hairy, covered in old stretch marks and don’t even get me started on my breasts. I have been in constant battle with my body image my entire adult life, strongly influenced by the kind boys at school, who used to call me ‘pork chop’ or made me put a pencil under my boob to see if it passed the droopy test (I didn’t). In short, there has been a distinct lack of self confidence.

And then on 14 August, all that changed. I was diagnosed with multiple myeloma and I was in a hospital. On my first night in hospital, I had to have an ECG. By the time they came round to do my ECG, something I had only heard about before on ER, I was in my pyjamas and hooked up to fluids via a cannula. That ECG was a quick introduction to hospital life and a lesson of how your body parts are not primarily sexual objects. During the ECG I asked if I could keep my bra on, the male nursing assistant said yes, which I was incredibly relieved about. I did not want to whip my baps out to a complete stranger. It transpired however, that I could not have my ECG with my bra on, nor my top. I slowly, degradingly, had to remove my clothes, where at the end of it, my right boob was flopping out and my t-shirt was over my head, with my body covered in stickers. I remember crying during the whole thing.

As my thirteen night stay progressed, I had to be washed by mother, have my legs shaved by my sister, had an Echo, got stuck on a commode and whilst under general anaesthetic, somebody, I assume a Medically Trained Person, inserted a catheter up my whatssit.

All false shame I had about my body, disappeared. It had to.

I did not realise just how much it had disappeared until I had the ECG last week. When I was asked to remove all clothes on my top half, there were no feelings of modesty or apprehension, I just took off my jumper, shirt and bra and let my two little friends hang right out. I suspected a change when I was at Mamma Jones’ house for Christmas. I would allow the females in my family to see me in a state of undress and think nothing of it, something I know I would not have done before. I do not come from a naked household. On more than one occasion, I failed to shut the bathroom door.

I have been liberated.

I am not quite so liberated in the flat, because I am a considerate person. I acknowledge that it would not be fair for Housemate; I don’t think he needs the image of my naked form in his head all day long. Although I am liberated, I am aware that my form is not for everyone, and you know, there is something called decorum. That said, I do occasionally get changed with my door open. I just forget. Sometimes, I let my boobies hang loose under my pjs whilst making a cup of tea. Other times, I use my arm as a shelf, depending on who is in the house. Thoughtful.

I guess, when you have to routinely talk about your bits and pieces, and show them, all embarrassment disappears. If I continued to be embarrassed, I could only imagine how worked up I would get, and I have more important things to fret over. When everyday is a battle to survive, what your body looks like, shouldn’t and doesn’t matter anymore.**

To be clear, I am not yet a nudist, and I do not think I will ever be the person who walks around the swimming pool changing room with their lady garden on show, but I do hope, that My Myeloma has enabled me to be more comfortable in my own skin. As bumpy and lumpy, with a texture of orange peel as it is, my body is battling something horrific and if it succeeds, I do not think that is something to be ashamed of anymore.

It does not hurt to try and see the positive side of My Myeloma, and this new found acceptance of my physical appearance is evidence of that.

Embrace it.

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EJB x

* Toilet talk with certain friends and Big Sister is an exception to this rule. Poo has always been fun.

** I am full of contradictions. I will probably have to remind myself of this when it comes to the big head shaving.

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