Wednesday, 11 July 2012

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 4th 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


Eileen said...

Karen - you know the hair grows back. I know you have been through enough but I'm hoping that this will be the last of the cancer. I wish I could do something for you. You still have those beautiful blue eyes to match that gorgeous face of yours. Love ya Your in my prayers

Karen Goodwin said...

Thank you Eileen. Not sure if the hair will come back as if this treatment works I will be kept on it indefinitely. A small price to pay to be here hey? Luckily I have been bald many times so know how not let it get me down. Can just get soo blooming cold lol xxx

Lisa Elliott said...

Well youre the best looking skinhead thug ive ever seen......just sayin!