Hair so Dear

I cannot believe how much things have changed over the last 5 yrs !!!  

 

Let me roll back to 2007 when I was given my first NHS wig prescription that said to supply ONE WIG.  I swapped the prescription for my first wig that would have retailed for £290. No exchange of money was required as the prescription was for ONE WIG.  Then in 2010 and losing my hair again, I was given another prescription.  Again stating to supply ONE WIG the prescription was swapped for a wig that would have normally cost £200 but again no money was required.  Even though wigs aren’t the best of things, at the time it’s a sort of  ‘Oooh ta this is Fabby’ and you walk out of the wiggy shop with a big gleam on your face thinking that you have just won the best hair-do award by Vidal Sassoon or something, only to realise that months later it spends half the time being snuggled up with the dog, draped over the back of the chair, stuck in your handbag or in my case thrown across the bedroom floor due to the itchy sweaty feeling that they give you.

 

It didn’t bother me back then when I lost my hair and let me tell you it bothers me even less now.  I’m used to not having hair or much of it, but I’ve always had my rug (wig) as a backup just in case I have gone out somewhere that I wanted to feel a little more normal (if there is such a word for me) and dressier than the skin head thug or lipstick lesbian that I have also been called of late.  My current rug is well over 2 yrs old and I’m surprised it’s still wearable with the way I have treated it.  In fact the wiggy shop lady was also very surprised with its condition, and that was just based on the fact that they normal only last for approximately 12 months, before looking so shabby that the only place they are fit for, is the dogs bed.  Having the same 2 hair styles of skin head or brown bob for the last 2 years I asked if I was allowed another prescription.  Of course I am.  I am (we are) entitled to one every year, so I have come to find out now.  

 

Ok so the good news is that I am entitled to another NHS prescription to get myself a new rug (wig).  Holding onto my prescription I excitedly rang the wiggy shop to book an appointment and had all sorts of visions running through my head; blonde, short, dark, long.  The wiggy world was my oyster and I was determined to pick something a little different.  I love my current rug (if you can say that about a wig), wel; I love the style, but with all the treatment I have had, my complexion has changed and I have been looking rather pasty so I am wanted something a little lighter.

 

What a bloody joke.  Stupid government cut backs.  Yes this is where I start to go off on one and start my bloody moaning again.  The wig prescriptions are worth diddly shit, according to wiggy shop lady she said it entitled me to a £66 plus Vat even though it clearly said to supply ONE WIG.  But get this; she said I could pay extra to get any wig in the shop. Woweeeee, I should think they would allow me to top up out of my own money as the cheapest wig in there was £180, that looked like a mass of mess than a bloody hair style.  Yes she was making out that she was doing me this great big bloody (must should stop using that word) blooming massive favour.  If I could afford to pay over £100 for a wig I wouldn’t have to bother with wig prescriptions, even more laughable is that if I was under the other hospital in the area then the prescription would allow me more money before having to top up with money that I just don’t have, its not much more but it’s still more.  “So why don’t you transfer to the other hospital?” I was asked by someone after one of my moans about this subject...  well it’s because the other hospital don’t do cancer treatment, they do alopecia. As if the diagnosis of how we become bald makes any difference. If you’re bald you’re friggin bald. 

 

I was looking forward to getting some new hair especially now mine has gone again but it was looking like I would have to make do with my old tatty brown bob that has to be sewn back up every time I wear it. 

 

This is where fb can come in handy, my place of usual day to day moaning and after posting about the stupid wig palarva it came apparent that wig prescription values depend on where in the country we live.   Its times like this that I start to get angry towards “Dr X” again, if it wasn’t for her I would still be working, probably wouldn’t have incurable cancer now (and that is a big probable according to investigation from an independent oncologist) and would still have money in the bank for a rainy day.  Lee and I have used up all our rainy days and live day to day scraping through, borrowing from Peter to pay Paul sort of thing and have had to go without food several times until benefits have been paid into our account.  Not the sort of eating healthy like they tell you to be whilst having treatment for cancer is it.

 

I didn’t want to give in and even asked if I could issue 2 prescriptions at once, seeing that I missed out on last year’s prescription, but Oh bloody no.  Only one prescription allowed at a time.  And then the most amazing thing happened.

 

Facebook friends started sending me messages, wanting to send me there old wigs or asking me for details on how to get money through to me, to put towards a wig.  There was also one message wanting to send me £200 to make sure I had a good decent wig, saying “Don’t just pick any old crap”.  Now talk about a lump in your throat, there are no words to describe what I felt, as some of these people were people that I have never met, we had met online through facebook, never met face to face, never spoken voice to voice, we were brought together by this awful disease called cancer.  I was overwhelmed and couldn’t get over the generosity and kind heartedness that was coming through.  I am a proud person and no matter how many times people have tried to help Lee and I out with cash, donations of any kind, whether it has been to help towards our bills, give us a day out or in this case to help towards giving me a great jiggy wiggy hair-do, I just cannot accept.   

 

Wigs have been coming through the post left right and centre and I would firstly like to apologise to all the girls who posted rugs out to me if I have not worn them, the majority have been way too big to sit on top of my small child sized head, but will endeavour to do a bit of sewing to reduce the scalp size and maybe treat them to a little trim.  Even with all these wigs I was still feeling a little down in the dumps about it.  I wanted the same wig as before (but lighter)

 

The other day after getting dressed to go out shopping, I pulled out one of the blonde rugs.  I shook it, pulled a face and thought ‘This is so not me’ plonked it on my head and stood at the top of the stairs in front of the mirror.  “Wow Sexy!” is all I heard.  I looked down to see Lee stood at the bottom, smiling up at me.  Talk about giving you a boost of confidence, well lets not go over the top but, at least it gave me the confidence to walk out of the house with the new look rug on.  The fringe was way too long but I have to admit, I enjoyed being a blonde for the day.  Lee’s mum came round “woooo I like that” Lee’s Aunty came round “Wow is that really a wig, it looks so real”.  All these complements were just what I needed.

 

I have now got a different array of looks, depending on how I feel.  To top that off I also found a another place where I live that also accept NHS prescriptions called ‘Beauty Spot Cosmetics’ They stock what I would call more of a fashion wig than the state of the heart one’s but don’t cost the earth ranging from around £20 each.  I  came out of there with 2 long blonde rugs in exchange for my one prescription and one of them is nearly identical to what my hair used to be before I lost it back in 2007 and get this; that wig is called ‘Old Hair’ ha ha...

 

I know everyone deals with hairloss differently, but my latest ordeal just goes to prove that you don’t have to go with a style or colour that you’re used to.  Wigs also change shape slightly once you wear them, so give them a little time to settle to your head shape.  Have fun with them and make them work for you.

 

 

top wig, bottom real

Eribulin Chemo & Hair

Eribulin Chemo is still quite a new drug and hasn’t too long ago finished trials with outcomes of amazing results.  Like any cancer patient, we always tell ourselves that this is the one, this is the one to work, to kill the cancer, and hopefully put us into remission.  In reality though its very different and through my fight so far has realised that what can work for one person just doesn’t work for another and vice versa, which is a big factor as to why there is still no cure for cancer.

I am hopeful and have put my mind back into a positive, rather than the way my mind was working with the Capcitabine and the Vinorelbine.  Yes I know, I have been in a bad place, I have wanted to not wake up in a morning, I have said many times that I have had enough and can’t do this anymore.  But after having 9 weeks off treatment it is amazing how good one can feel.  I feel alive, happy and want to live.  I have improved day by day and have seen the old me, and even though I thought my oncologist mean for not giving the go ahead for treatment to start due to my pain, I can see why.  I was totally utterly upset at the time but he was right.  If I had started chemo then, I wouldn’t have been able to handle it.  My body wouldn’t have been able to handle it with all the aches and pains and my mind definitely wouldn’t have been able to handle it.   

What surprised me about the Eribulin is the amount of time it takes to administer.  Firstly though; I have to say very excitedly that I did not have to hang around for the 6 hours after the Herceptin loading dose.  Very exciting moment I can tell you, but I suppose it wouldn’t have mattered anyway as I slept the whole time my treatment was being administered.  Ok, so what about the Eribulin?  Wait for it... the total time it takes to administer is.... is a staggering... 5 minutes.  Oh my friggin aunt, I couldn’t stop laughing.   Because it’s still a newish drug, my nurses had to research some information on it, and was told with a big smile that it’s not too invasive and doesn’t damage the veins like most chemo’s.  Not that this would matter anyway, cos I have my good old life line, my portacath.   Its not too invasive, but its still invasive enough to kill off my hair follicles and turn me into what Lee is now saying a bowling ball and is even threatening to draw 3 black dots on my head for the finger holes because of my humongous overgrown steroid cheeks.  

Side effects of the Eribulin is; I don’t have a clue.  I was issued with a DVD which explains everything but I havn’t watched it.  Jo my nurse told me the main side effects as like with most chemo’s; hair loss, muscle and joint pain, nausea, tiredness and low blood count, so I know to keep a check on my temperature.  I don’t want to know what the side effects are, I don’t want to put them all in my head because let’s face it, lists of side effects go on and on and on and if there in my head then I will most probably frickin get them.  I would rather wait and see.  I’m not daft ( sorry to disappoint) but I know the main things to look out for, temperature being at a high priority and keeping them dam infections away.  

It was late on the Friday evening following my Day 1 chemo day while watching TV that I said to Lee “I think they’ve given me a placebo” I didn’t feel any different.  I was still on a high, had no nausea, no tiredness or anything. I was feeling frickin great.  And then Saturday morning it hit me... oooh friggin crap... I couldn’t open my eyes, I was so dam tired which resulted in me sleeping for most of the day on the sofa.  This tiredness carried on, which Lee pointed out that it could be down to finishing the steroids that I had been on for the pain control.  Good point and made a note of it to discuss on my next chemo day.

My next Chemo day was on Wednesday 4^th July.  I was still very tired and was thankful that the chemo was along one of 5 minutes to administer.  Yes I still can’t can’t get over the time it takes and have probably bored the living day lights out of everyone by repeating myself over and over again ”Its takes 5 bloody minutes”  I came away with a bag full of steroids, maybe the tiredness is down to coming off them or it could be the chemo, but by having some more it will tell me either way.

Unfortunately I don’t think it was the lack of steroids that are causing the tiredness.  I’m still tired and other side effects have crept in, to the point that I have had to take an additional instant relief pain killer every 4 hours.  I’m not in great discomfort or pain, well not to the extent that I am shouting and swearing at people to take the dam pain away because it’s so bad, but I am so stiff and achy and have turned back into the old geriatric lady trying to get up out of a chair and walk across the floor.  I can’t eat due to mouth sores and the mouth sores down my throat are making it very difficult for me to get my pain meds down.  My gums are burning constantly, my stomach is burning, my hands have no feeling and all I want to do is sleep.  Oh here we go again; I’m having a down moment.  Sorry, but yes I am.   They don’t call this a fight because its easy, they call it a fight because it is a hard bloody fight.  This is my life now, constantly on treatment to control my cancer and give me a longer life, but at the same time makes me feel like shit.  It’s not like it was back in 2007 when I was having treatment to make me cancer free, which was short term shittyness, I am now on long term, the rest of my life shittyness.  I have asked myself time and time again what is more important; quality or quantity?  And I keep coming up with the same answer, and that is quality, I would rather have 6 months with quality in my life than 10 yrs of feeling utterly crap all the time.   It’s when I feel so shitty that I want to stop treatment and let nature takes its course, but in my head I know  I can’t,  I know I have to keep on fighting because one day that cure may be found.  I went 9 wks without treatment and had the fear in the back of my mind that the cancer was growing out of control, so that has to tell me that I want to keep fighting.  

My hair started to shed on Monday, it wasn’t too bad and was ok unless I ran my fingers through it.  Yesterday though was a totally different ball game, flying into my eyes, up my nose and everywhere that I crawled to even giving Lee lots of helpings in his mug of coffee.  “Stop doing that I’ve just cleaned up” was Lee’s favourite sentence throughout the day from me combing my fingers through my hair more and more.  I was trying to hang onto it for a lovely friend to come and dye it bright electric blue with shimmering pink tips, you know, to have one last blast with my staggering 2 inches before it had to go.  I was also planning on giving my Bessie mate Pauline the job to buzz it all off, which I thought would freak her out immensely, but was shocked when she said, if that’s what I wanted she would be honoured to do it for me.   I had to take the bull by the horns and get rid, so last night I got the scissors and chopped it all off as close as I could to my scalp and then ran the clippers through it, giving me the GI Jane or Skinhead Thug look or any other look that people might associate it too.  

I have had a lot to contend with over the last week and last couple of days.  I have woken up this morning and frightened myself half to death from seeing a Skinhead Thug staring at me in my bathroom before realising it was actually me.  My stomach is still burning, I still feel like shit, but I am feeling much better today.  I have a week to build myself back up before chemo again and God Dam it, I am going to build back up, I have my fighting head on, the punching gloves are bigger than ever and Dam it, I am going to get out of this house tonight.. The dobba’s are at the ready... Bingo here I come lol