Scans & Trials

It wasn’t so long ago that I was getting all frustrated and nervous about being accepted onto a chemotherapy trial.  I didn’t get the actual trial drug, but being on the trial means much more to me than just that.  It means I will have more regular Scans, will be more closely monitored and have in return received various different telephone numbers that I can ring at any time.

 

I have now completed my 2^nd cycle of chemo and am happy to report that I am feeling pretty good.  Scrap that; I am feeling downright bloody fantastic.  I was unsure whether the tiredness from cycle 1 was down to the lack of steroids that were being shoved down my throat everyday, and thought that maybe it was all down to the side effects of the Eribulin chemo, as every joint and muscle in my body was bloody painful too, along with the sore throat, gums and spotty gob that I had also developed.  Well!!! I am here today to tell you that you cannot keep me down in the dumps for long.  With the help of the steroids, my energy levels have risen, so much so that I have been out and about and walking the dog every day, ohh and get this;  I have also dabbled with a bit of house work too (well overdue and hubby well pleased ha ha).  So the Steroids helped with the tiredness but what about the aches and pains, the mouth sores and spotty gob?  

 

Amazing how our minds forget, but again Lee hit the nail on the head.  The aches and pains were nothing to do with the chemo, they were nothing to do with not having or taking the right amount of pain meds.  They were all down to the fact that I am receiving the biosphosphonate infusion called Zometa again.  I had this for a year in 2009 and the symptoms I had from it then, are exactly the same as I am having now.  A couple of days after infusion, I get the feeling of having had pure lead poured down every bone in my body to the point where they feel too heavy to move.  To lift a finger its ‘Oach’, to move an arm its ‘Oachee’ and to lift a leg its ‘Wooo can someone do it for me please’.  Now I’ve realised this, the aches and pains didn’t seem too bad this last infusion and just readied myself to have a few lazy days as instructed by my gorgeous hubby.

 

The mouth sores and spotty gob are unfortunately a side effect from the chemo, but I have been given some mouth wash and cream that would hopefully keep it under control.  Today, I have one cold sore type of spot left, but the cream is working wonders at stopping any further ones exploding across my gob on full view for everyone to stare at whilst having a conversation with me.  The sores inside my mouth have eased to virtually nothing and just have the dry mouth and nasty metallic taste that only delving time and time again into the milk carton seems to sooth.

 

Well back to the important stuff.  Scans and Trials.  I have completed my first 2 cycles of chemo and was scheduled for a CT Scan on Monday (6^th Aug) to see how I am responding to the new treatment.  

 

Firstly on Monday I had to be at the hospital for 11.15am for an ECHO, this has to be done to make sure that the Herceptin isn’t having an effect on my heart (a big side effect of the drug).  There was a bit of confusion here; I reached the department only for them to tell me that I wasn’t booked in and should go to the other department who did heart scans, which was at the other end of the friggin hospital.   Well when I got there, I was greeted by my Breast Nurse who was also having a little problem herself getting my appointment sorted out.  Trials can be strict and when they say a scan or anything has to be done in a certain time-scale, they mean in that time-scale and not a give or take a couple of weeks.  Implants and ECHO’s are not a good combination as the implant can interfere with the images that are required, but after the Mr Echo Man did his probing and digging deep into my rib cage and jugular he captured the images that was required and I was free to go. 

 

4.20pm and I back waiting for my CT Scan.  Luckily there wasn’t much waiting around this time and only required 4 stabbings of the needle to get the cannula in for the radioactive dye to be pushed in, that gives the weird warm feeling as though you have pee’d myself.  My veins are totally knackered and so for the time being I have a nasty looking bruised mess that resembles an overused junkies arm.  Lots of TLC and avoidance of needles for the next 6 weeks and I will have my arm put right ready for the whole ordeal to start again.

 

I have just come back from my oncologist appointment and still down right blooming giddy with excitement.  I went through the usual of having bloods done and my port flushed through first,  followed by lots of questions of how I have been for the last couple of weeks with my Breast Nurse; meaning the side effects, had my blood pressure done and was weighed ready for my dose of chemo to be made up for tomorrow... and then I got the news from Mrs Oncologist who didn’t beat about the bush at all.  I am responding really really well.  So well infact that even my oncologist sounded like she couldn’t believe my Scan results.  Ok so how good are they?   Bloody fantastic (says me still jumping up and down like a raving lunatic)

 

Measurements of the 2 largest lesions in my liver in May were 13x11cm and 11x11cm, after the 9 weeks of no treatment these had increased to 29x24cm and 20x18cm.  6 weeks later and after just 2 cycles of Eribulin the measurements are now down to a staggering 22x13cm, and 11x10cm.  Massive reduction by nearly half their sizes and it’s not just those 2 lesions that have shrunk either.  All lesions in my liver have reduced by nearly half their size.  “Get in There” was Lee’s response whilst he jumped up out of the chair and raised his arm up into the air as though he were a mad football supporter cheering on after his team scoring a goal.   I on the other hand was more laid back. Ha ha, not on your nelly, I was fidgeting about with my stupid grin slapped across my face, itching to get out of there so I could tell everyone in sight and call everyone on my phone, but before any of that could be done, Lee and I had to sit, listen and talk about my treatment, side effects and oooh my steroids. 

 

Why on earth does she want me off the steroids.  She took me off them before and I felt fooking crap.  I asked to go back on them and have proved that with them, I can live a good healthy active life rather than curled up on the sofa with not enough energy to even lift a glass of water to my mouth, and that glass being a teeny weeny glass.  Even one of the nurses earlier commented on how well I looked compared to the other week.  I can walk upright rather being bent over, I’m awake for goodness sake, i’m eating and laughing and if it wasn’t for the rug on my head or should I say the baldness that I have, no-one would even know that I have cancer and having chemo.  Anyways, my Mrs Onc knows best and for whatever reason I am being weened off the steroids again, but this time going 8 days between each dose till i’m off them again rather than the 5 days she did the last time.    I’ll just have to see how I go.

 

I rang everyone, I text everyone with my good news.  I felt that the chemo was working because the lump in my neck felt smaller, but I did not expect the result I have just had.  Its leading me to think that maybe, maybe this chemo treatment is the one for me, the one that is going to work at obliterating every single squatter out of my body and to kingdom come and with the plus side that the shitty side effects are not that shitty, especially compared to the capcitabine.  I will have to wait for my next MRI to find out how the chemo has worked on the bone metz, but I can imaging that this could be a long wait as I don't have them that often.  Bone metz isn't life threatening so the main focus is my organs and making sure the squatters dont breed too much in and around them.  For once though I am definately looking forward to my next scan in another 6 weeks to see how many more squatters I have killed.  Today is definitely a day for some celebration time and I am going to do it in style.  I am going to chill and relax in front of a good film and enjoy a very large glass of red wine (or two).

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

Wanting Chemo

Just over 9 wks ago I had the news that my treatment wasn’t working due to progression showing in my liver and spine.  It has been an up and down roller coaster since then trying to get my new treatment plan organised.   I thought by signing the declaration for the Trial immediately would have got things moving more quickly, but how friggin wrong was I.

Firstly I was delayed due to being admitted to hospital with severe pain caused by the radiotherapy that was given to my spine and then my oncologist said he wouldn’t give the go ahead for treatment until pain was managed and controlled.  Due to the CT Scan department taking it upon themselves to tell me that I couldn’t have the full body scan done that was requested due to my last one being just weeks ago I had to wait for another appointment to come through as it was a necessity to get onto the Trial.  Luckily, Jo my nurse was on the case and managed to get me on the cancelation list.

I had the extra CT Scan along with checking my little old brain again; which I am proud to say that I still have one.  I had the Bone Scan and the ECHO (heart Scan).  I had all the blood tests done, my height taken along with my ever growing weight and so you would think that it would just be a simple put my name into the computer to find out if I was picked for the Trial Drug or the Physicians Choice.  But Oh No!,  apparently my original tissue sample from my mastectomy back in 2007 could not be found (and is still missing) and so another sample was sent in which did not show the criteria that was needed and so I was refused from the trial.  My nurse was very apologetic and relayed all the information onto me.  Luckily, I still had the C3 vertebra that was removed in 2009 to be sent off, my nurse said that this sample should show the correct criteria of having a metastatic breast cancer that is HER2 positive, but due to timelines of scans etc... this meant that if the testing of my sample wasn’t approved quickly then my ECHO needed to be redone and so I was on the waiting game once again, but this time with the anxiety that I could be rejected from the trial.

On Wednesday 20^th June, I spoke to my nurse who said that the Trial company still hadn’t approved my sample and gave me an appointment for the ECHO to be on Friday the 22^nd.  Me being me; has to know things and over the phone asked her if the results of my CT scan were ok.  Don’t forget I have gone 9 weeks without any treatment what so ever since the last CT scan and so the anxiety of the friggin squatters getting out of control and taking residence in my lungs, kidneys or any other organ in my body were definitely a big factor that was going around inside my little old brain.   Big sigh of relief after hearing my nurse tell me that there was no further progression apart from slight growth in my liver, which to be honest was expected.  

Half an hour later and my nurse rang back... My oncologist wanted to see me, and I was given an appointment for the following day.  Cripes!! ... I was up in Yorkshire at my mum’s so had to get Lee to come and pick me up early in the morning.  My stomach was churning, why does my oncologist want to see me? Is there something in my CT Scan? Has it spread to other organs?   The mind is a very dangerous place especially when you know there are results to go through.  Lee said the appointment is probably to go through my treatment plan, and like he has done for the past 5 yrs, told me not to worry.   

That night was a terrible night, I daren’t take a sleeping tablet because I knew I had to be up early and so I tossed and turned most of the night, with the time being 5.30am the last time I glanced at the clock.  I was shattered and to say that I had butterflies in my stomach was a big humongous understatement.  

Lee was right! Come to think of it, he’s always right but please don’t tell him I said that.  My oncologist appointment was to discuss my treatment plan.  Scan results were good and showed slight progression in the liver.  No other organs affected by my bloody ugly squatters.    We discussed the loss of my original tissue sample (still not been found) and decided the treatment I would have if I was picked out for the Physicians Choice (IV chemo of Eribulin).  I also signed the consent form for the Eribulin just incase I was rejected for the Trial of TDM-1.  

Lee and I came out of there with the big feeling that the appointment was to prepare me for being rejected for the Trial.  Hense my oncologist saying, “there isn’t always enough tissue to test from a bone sample” along with having me sign for the Eribilin chemo too.  

Mixed emotions again and back on the waiting game.  I so want the TDM-1 trial drug, who wouldn’t, the results so far have been amazing and is currently being called the New Wonder Drug, on the other side what is most important to me right now is actually being approved for the trial as this means that I will be watched and monitored more closely and so any further spread will be caught early.  I have read up on the Eribulin Chemo which sounds to be another good drug too, this has just recently finished trials and has had amazing results, but... yes there is a but... if I have this one, it will mean that my 2yrs of hair growth from the last IV chemo, my staggering 2 inches of growth because the Capcitabine and the Navelbine delayed and stopped growth would inevitably fall out, turning me into the bald Kazza with the humongous cheeks from the steroids.  Whatever the outcome, treatment will commence next week.  Luckily I am approved for the trial, another obstacle over come and one obstacle to go.. Do I get the Trial Drug Of TDM-1 or not?

Monday 25^th June and my phone rings.  I know straight away who it is and answer the call with my heart paused.  Hearing Jo’s voice, I knew straight away and butted in quite quickly “I havn’t got it have I?”  Jo seemed to be more disappointed than me, it has taken what seems forever to get me on the trial and at the last obstacle, the computer didn’t pick me for the drug anyway.

Am I disappointed?   

No!   Like I said the main thing for me was to be on the trial so that I am more closely monitored, plus treatment will be given in the Research department rather than the normal Chemo Day Unit, meaning less hanging around, waiting and delays.   

Chemo is set for Wednesday at 10.30am.  I will have the Eribulin Chemo on Day 1, again on Day 8 out of every 21 day cycle.  I will also have the loading dose of Herceptin again which will be given every 3 weeks, but am hoping that because I have done the loading dose twice before over the last 5yrs that they don’t keep me hanging around for the 6 hours to keep an eye on me incase of a reaction.   For my second cycle of chemo, it is also being sorted for me to go back onto IV biosphosphonate, the bondrant tablet that I thave taken for the last 3 yrs will stop and I will have once again Zometa

Fabby Times & Fabby Friends

As you know, the last couple of weeks/months have been a bit of a yo yo, which I might add ‘the bit’ has to be the biggest understatement ever.   For those of you who don’t know me that well, this is where you will realise that I got the nick name ‘Mad Kazza’ for a reason, cos you just can’t keep this gal down.   Ok, so lately it seems all i’ve had is bad news or friggin hassle, but not anymore, cos I’m back, and all this good stuff started just a couple of hours after being given the shit news that the cancer had spread into all my bones with the exception of my 2 arms and 1 leg, when I went for the pub lunch with Pauline.

 

So where do we start with the other good stuff, Mmmm well let me think... Ohh yeah as if I can forget especially with this blog being totally based on what I am going to tell you... I received a text from a very good friend up in Scotland saying, “Hiya Kazza, what you doing Bank Holiday Monday?” with me being slow and all, totally blonde, even though I’m dark now, I text back “nowt much I’m boring, having you got anything exciting planned?”  Most of the British Population was busy organising street and garden parties for the jubilee celebrations, but Lee and I were quite content in having a lazy time and getting me fit and ready for when my new treatment starts. 

 

When you have great friends, it doesn’t matter where they live as Lulu and Gill had decided to do the Thelma & Louise Trip (a trip Pauline & I did last January), they were; get this....... ‘Driving down to My House all the way from Scotland’ now how friggin great is that.. Its more than great... it’s super duper fandabadozy frickin brilliant, and get practicing with the wine drinking time even though I’m not supposed to touch alcohol with the pain meds that I’m on.  

 

Well Bank Holiday Monday arrived, I was like a giddy youngster on Christmas Eve, Texting Lulu & Gill constantly throughout the day and then relaying onto Pauline, Gemma and Dawn, who were already at Pauline’s and drinking Vodka and Wine by 3pm. 

 

Laying back in the bath for a long soak when you have a bloody painful back, ribs and neck sure isn’t a good idea and then walking around in the exact same shape of the bath is not my idea of looking super hot on a night out, not to mention not being able to get my arms up to style the 1 inch of my extensively long hair... 90 yr old geriatric springs to mind, but at least I still had my rug as a backup.

 

The fabulous Pauline, Dawn & Gem dragged themselves round to my house by 5pm where we polished off (I think) 4 bottles of wine, whilst waiting for our Scotty Buddies to arrive sitting in the sunshine of my back garden, and of course gave us lots of opportunities for a photo shoot lol.  Dawn was half shot, Gem was totally off her rocker, Pauline to me had some catching up to do, and me!! Well, I had some serious catching up to do too, but didn’t want to overdo it in case the mix of my pain meds and alcohol didn’t mix too well.  As you can imagine there were lots of screaming and squealing going off from my back garden when our lovely Scotty Girls arrived with hugging and giggling going off constantly between sips of wine before we headed off into town.

 

 

 

I have to say that the whole evening was fantastic and sitting in an all you can eat Chinese Restaurant, complete with a scrummy chocolate fountain that we literally had to stop Dawn from going under head first later in the evening, was just the perfect place for 6 mad women, especially when we were seated at table laid out for 8.  It was the perfect setting and after we ordered 2 extra glasses and drawing smiley faces on 2 serviettes, our table was complete with our 2 absent friends Hazel MacSwan and Sharon Jenkins who sadly lost their fight to breast cancer, but will always be a part of us and be remembered always.  

 

You know, sitting, eating and drinking, I felt normal for the first time in ages.  I didn’t have any pain accept when I had to get up out of my chair and grab more food or walk across the floor to the ladies room, which I think if I had seen my reflection, I would have freaked cos I could swear I would have still seen the shape of my bath.  Serious conversation was like passing ships in the night, a rare thing as the laughter roured from us.  Lulu’s wig was going in all directions, mine I couldn’t care less if it was on backwards, and the amount we all ate, I am surprised we could fit through the doors as we left.

 

It was getting late when we left the restaurant, and headed for the pubs, stopping by at the Square Lions for a photo shoot opportunity, something that Pauline and I have to do every time we hit the town.  Normally the climbing up on the Lion is something that I have done time and time again with my kinky boots that had a 5 inch stiletto heal, but sadly since my back has gotten worse, Lee my very thoughtful hubby has thrown out ALL my heeled shoes.  Yup, all heals gone, dust binned, cappoof vanished to none existence, so not do I have to walk around with the 1 inch height loss from my spine compression, but look a dam lot bloody smaller without my heals, making me look like a bloody junior school child with wrinkles.  Every picture I tried to take of the girls on the Lion came out blurred from the jiggy laughing bit that my whole body was doing, from seeing Lulu trying to climb up on the bloody thing.  It was as though someone had smeared it with grease making it the main event of a ‘It’s a Knockout Contest’  up one minute and then sliding down again sideways the next, and at one point I even thought about charging the passersby to view the spectacle of seeing 6 nutty woman going mad with a lion.

 

Once we hit the pub, we got plonked down and took up residence for the remainder of the evening, ordering cocktails of Malibu mixed with Vodka and Red Bull and let me tell you, that Red Bull stuff really really works, and does give you wings, another one of them and I would have been doing the friggin can can off the tables and spiralling round doing the pole dancing thing in the middle of the room.  Ok, slight exaggeration there but at least my mind was working to even think about it lol, my body may not be capable of that now, but it would have been a damn good laugh if I had tried.  

 

Panic Stations.... Pauline realised that we had left Hazel and Sharon in the Restaurant.  Some hosts we were hey, having the girls down from Scottyland and losing half of em, especially when we had only been to 2 places.  Dawn came to the rescue and shouted at the top of her voice “There here in my bag” Hazel and Sharon were safe and joined us yet again for another drink.

 

Lee came to pick us up, from the corner of where we thought Lulu and Gills Hotel was, and after Lulu’s wigs did its rounds on everyone’s head and we’d hugged each other for the millionth time, Lee had the very brave job of driving us home.  Its amazing how conversations flow when alcohol is in the equation.   Poor Lee had to endure the topic of pubic hair loss through chemo from Dawn, Gem and Pauline, poor bugger, I couldn’t stop laughing and I know it had a great impact on Lee as he kept asking me which one kept talking about pubes for most of the following day.

 

I can’t believe that I had my Scotty Buddies at the wrong friggin hotel, but luckily they didn’t have too far to go and after a nice alcohol free lunch the following day my lovely girls were headed back for home.

 

 

I had a fantastic time and really appreciate Lulu & Gill travelling all that way to see me and I totally understand why they wanted to come, because I did the long 7 hour journey myself for the same reason last year.  When someone you love to bits, has news that isn’t good, especially when cancer is concerned, you panic and just have to see for yourself that they are indeed OK and not just saying it over a phone line.  I did it with Sharon, and I am soo thankful that I went through to see her as it was just 3 months later we lost our shining star.  Its times like this that you realise who your real friends are, each of these girls have stuck by me every step of the way, through the bad as well as the good, which of late seems to have been that a lot of friends have disappeared whilst I have been in a bad place.  I know I may have removed myself from them, but I stand by my decision, a true friend will keep bugging you to submission, just like my valued friends have.  

 

Thank you girls, its was just what I needed and I wuvs ya trillions xxx

 

 

Bone Metz Gone Mad !

The thing with medical reports is you just havn’t got a bloody clue what they are talking about.  Ok so we know that I have further progression, but where is the further progression.  Saying ‘Hemipelves’ to me means diddly shit, and so I was very lucky that this lovely oncologist took time with me to explain what everything meant.  Today also taught me why there are so many delays with appointment times, because even though I was 2 hours late getting in, I didn’t leave the hospital until 4pm and spent approximately one hour with my oncologist.

CT Scan (But need a new one)

I was told that there was slight progression, but to see it in writing shows me what is actually happening.  This report is compared with the previous scan dated on the 1^st March 2012.  the biggest lesion on the right lobe is 13x11mm and a new large lesion measures 11 x11mm.  So it’s not too bad, they are still small.

There is some emphysematous change in both lungs particularly in the upper lobes, which means; there is an abnormal increase in the size of the air spaces in my lungs, resulting in laboured breathing and an increased susceptibility to infection.  There is no evidence of metz.

MRI of Spine

Spinal surgery between C2 and C4 is noted with no significant change in the appearance compared with previous Scan image.  This means that my metal bionic parts are still intact.  This report states that there is Extensive bony metz disease throughout the spine including the lower thoracic and lumbar.  The appearance of disease has progressed with an increase in size and number of metz.  Degenerative changes are also present in the lumbar and a mild prosterior disc bulge at the L5/S1 vertebral level.

Whole Body Bone Scan

There is multiple additions of increased activity consistent of bony metz.  Even though my oncologist went through this with me, my brain could not hold on to the information and so with the wonders of Google I have been able to pin point where the metz are. Sites involved include; 

The skull vault and the whole of my spine all the way from the Cervical to the Lumbar.  Both Sacral Alae, Both Hemipelves including the Acetabulum, Ischium and inferior pubic bone and iliac bone, some big meaningless words there aint there to us normal none medical folk, anyone in a nut shell they are all in the hip area of our big skeleton.  There is also disease in the Left femur (top leg) in the intertrochanteric region, which is in the top part and femur head is affected, which again is all closely tied to the area of my hips.   Increased activity is seen in left coraacoid and gelnoid protions of my left shoulder and further area of focal uptake is seen at the left suborbital ridge, which is the bony ridge located above the eye sockets.  There is activity in right, acetabulum and ischium extending into the infereiour pubic remus, which again is all in the hip area.  My left sternoclavicular joint represents degenerative changes which is the joint between the sternum (chest bone) and collarbone.  The cancer has also progressed to the bilateral ribs.

So there we have it.    As soon as my oncoligst told me places, it explained to me what had been happening.  You see, I have complained about my left  hip especially over the last couple of months, and said it felt like my hip was going to dislocate, this is the side that it is in my femur ball.  Unfortuanetly CT scans just don;t show up bone properly.  Then there is the times that I have been in hospital for pain in and around my chest, I have had scans on my lungs, but maybe some of the pain that I had and defiantly the pain that I am having lately, is connected with the bony metz of the ribs.. I can’t sneeze cos it bloody hurts and I can’t cough, but yet I can take in long shallow breaths that don’t effect me, as the pain that I have doesn’t seem to feel internal.  The pubic bone area for example, intercourse has been a little uncomfortable, so again is this why.  Then there has been my latest moaning of having migranes without the headache.  No headache appears but yet my left eye, becomes blurred and I get that tunnel double vision, stars moving around like nutters, making it impossible to see due to them being right in the line of sight.   It doesn’t last long, maybe between 5 and 30 minutes, but it is so bloody annoying, especially when I can’t see my iphone to check my facebook ha ha.  (have to get my priority’s in order don’t I)

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The news of my results, shocked everyone, and I am please and thankful that my mum held it together for me when I phoned her.  I tried to make it as light hearted as possible whilst telling her and used her knowledge of being an ex nurse (which was before I was born) by trying to read out the blooming great big medical jargon that was typed up on the report.  I think it lightened the mood and rather than my mum thinking Oh crap, she had to use her brain on trying to think of where the areas were.  Good side tracking me thoughts.  We had a bit of a giggle too, Have you tried saying these words out loud, and on top of being super dozily drugged up on morphine meds, I finished up having to spell the fookers. 

Lee took the news quite well, and for the first time posted on his facebook, asking for his friends to say a prayer for me.  Big huge turn around here, as when I met Lee all those years ago in 2003, he wasn’t what you call a believer.  He beloved and didn’t believe if you know what I mean, he was more of a person that needed proof that things existed, he need to see things, but for this last 5 yrs, his whole attitude has changed in that department.  I would like to thank his friends for their comments to him; you really did make a difference.  I would also like to thank all my fb friend too not to mention my mum and family and my special little circle of amazingly close friends.  I know it’s times like this it’s hard, but as I said, it wasn’t all bad news.  The good news is that I can start treatment to start killing off my squatters and the super duper good news is that the progression is still in my bones.  Better there than going out of control in my liver or spreading to another organ. 

So after talking things through with Lee and then after my phone call with my mum, what did I do next.  Did I sit and dwell on the fact that the bone metz has gone mad.  Yeah I’m not chuffed about it, who would be, especially with the skull part cos its a bit too close to my brain for my liking.  Did I then call the next person on my list to of contacts to be informed?  Nope, I left my mum and Lee to do that.  I did what I do best.  I got changed, put on a bit of slap and went to the Pub ha ha... Pauline picked me up and we went to the bloody pub for a carvery and a huge glass of wine.  Now thats how you do it aint it.   We had a fab time, chatting and stuffing our faces with 3 different meats and tons and tons of veggies all topped off with a Yorkshire pudding and onion gravey.  Thank you Pauline, your a star.   

Whilst am on the thank you moment, I have to thank my sexy gorgeous hubby, he is the most perfect man I have ever had the privilege of knowing, I have no idea how he has put up with me especially over the last month or so cos I have been one super bitch with a biggest anger management problem ever.  He has took it on the chin whilst I have snapped at him for no reason what so ever,  he has listened to me moan, stood there whilst I ignored him (not on purpose but when my mind has gone elsewhere) but yet he has not moaned about my behaviour once.  He smiled and given me comfort at all times, he has done all the housework, done the shopping, taking the dogs out, the list goes on and I just wanted to say that I am the luckiest woman alive to have such a kind, considerate, sexy, gorgeous husband.  And Lee, I love you with all my heart MmWhaaa xxx

The Good, Bad & Ugly

First things first, Pain is getting better.  My legs are starting to feel like mine again, with the main area of pain being in my back and around the back of my rib cage area, which probably wasn’t helped by leaning over from my sun lounger to pick up my very large glass of larger shandy.  I remedied that immediately and took on the help of my super hubby who has kindly lifted or positioned my glass carefully for me to be able to drink it.

The Week has had lots of ups and downs, but life is like that isn’t it.  Life wouldn’t be life it was all good, cos the bad stuff is there for us to learn from.. mind you there are people out there that even after falling in shit pop up smelling of roses, but they are a myth cos if anyone tells me that a person has nothing but good stuff happen then they are living in a dream world.

Monday was planned for me to get a bit more active; I had until Thursday to pick up, sort my pain out and prove to my Oncologist that I am fit enough for chemo. And so putting priorities in order, Off to B&Q Lee and I went.  Stuff the house, cos in this glorious sunshine, my garden needed a bit of attention.  It took me all day to plant 12 bedding plants, so don’t expect much in the flower department for those of you who visit my garden, a few splits of my ground cover stuff later and a wonderful bird feeding box that Lee made over our waterfall  filter box has finished it off lovely. 

I am naturally nosey, and so when a letters come through the post, I open them ALL, even Lee’s which he doesn’t mind at all cos he just can’t be doing with endless amounts of junk mail.  Let’s face it; we use the postal service today for birthday’s and Christmas cards, and all that is remaining is the endless amounts of bills and junk mail, with the addition of in my case, Hospital Appointment. Gone are the days of letter writing with the good old internet and email service... (still not sure if that is a good thing or not).  I opened what I thought to be a hospital appointment and like the blog title says, it was ‘Good and Bad and Ugly’ the good was that it was a copy of the letter that my oncologist had sent to my GP and the Hospice about my pain control, so at least they are on the case and now just waiting to hear when my appointments will be.  The bad bit in it was it had now been written down that I would not be able to have any more chemo until pain had been controlled and my fitness level had improved.  Bad and Ugly part is; as you all know, I have treated my cancer diagnosis like a bloody bad flu virus that is as stubborn as myself and have majority of the time called it ‘the Squatters’, bloody downright ugly vermin squatters that I have been trying to evict for the past 5 yrs.    All this time, reports of always said Liver and Bone Metz present.  I don’t have large tumours, I have lots of small ones, which to me has been a good thing, but today’s letter read EXTENSIVE and so got me thinking about my so called squatters a little different.  It was a word that started to make me ask myself ‘How Extensive is it?’ and because I couldn’t answer, for some reason thought Lee would know the answer and plague him annoying with the constant questioning.  Like all this, I tried to put the letter out of sight and out of mind, and got my ‘What’s the point in worrying until you know there is something to worry about’ attitude, but every dull ache, twinge or agonising shoot of pain, made me think of it and wondered if everyone was something to do with the squatters.  I suppose the upside to being on such strong pain relief is that half the time your too zombie’d out to even care, and between you and me, i took a couple extra to be on the safe side.  Not that it worked when it came to bed time as i have suddenly developed an internal alarm clock that is going off at 3am on the dot, even with the help of the good old sleeping tablets.

Having all these scans, Lee said could be scary, he told me to prepare that they could show up something and that the squatters could have spread.  He is feeling it I know, cos it’s the first time really that he is trying to prepare me for hearing something new and from seeing me in so much pain, has brought it to the forefront of him that things CAN and probably will get a lot worse than they already are, especially with having so many bloody scans all at one time.   I understand him, cos I go through this every time I have a result from one scan, , its normal to think you may get bad news, its normal to wonder if the C has moved somewhere else, and definitely normal when you are in constant pain that no matter how much pain relief you have still won’t go away.  I think we prepare our mind for the worst, so that if it does come back bad news, it’s not so much as a shock to us, and don’t flip out into the big crying baby lunatic routine, and then there is the huge sigh of relief when you actually get good news. 

Thursday morning, just as Lee and I were walking out the door for the hospital, I received a phone call from the hospice, woop woop, great start for the day, I now have my appointment booked for next Wednesday so will definitely be getting my pain sorted out.  I had gone for the do the bit of hair and slap some war paint on look today, as if it would influence my oncologist into thinking that my fitness level had improved by 100% and that I had no pain at all with the way that I walked in doubled over like a granny trying to hold onto an invisible zimmer frame.  Lee made me promise that I would be honest and not try and make out that I am better than actually I am.  As if I could, he was coming with me and has a big mouth cos he’s landed me in it before and told Mr Nice Oncologist whole truth and nothing but the truth just seconds after I’ve been smiling my bloody head off an lying through my teeth.

As usual, waiting time at the oncologist was a bind, WTF is happening with the whole appointment system.  Lee and I were sat there watching people being called in way after we had arrived.  I’m not exaggerating either; we were sat for an hour and watched four people called in who had arrived friggin ten minutes ago.   I reminded the receptionist that I was still here, and she assured me that my name was the next patient to be called.  Lee and I watched the last patient leave the consultation room and sat for a further half an hour, but no-one was called in, so knowing our look, I suspect the docs had left and gone for lunch.

At 1.45pm Lee had to dash off to go pick Luke up from School, leaving me behind to receive my results on my own for the first time ever in this whole cancer/squatter palarva.  Lee has always been with me for results and I had no idea how I would react if the news was bad.  No hand of Lee’s to hold and no Lee to lean on. you never know with all this cancer crap, what news you will get, sometimes when you expect bad, you get good and then out of the blue when you things are hey ok, they give you the news that you just don’t want to bloody hear.  I did think about lying a little, well not lying, but exaggerating that my pain medication has been working better than it has, you know, to boost my oncologist in the right direction of writing me down as ‘Fit for Chemo’ but at the end of the day, this would only be lying to myself, , especially when the one of the chemo side effects is joint and muscle pain.

I was called in at 13.51 and then waited to actually see the doc.  So there I am sat all on my lonesome, twiddling my thumbs waiting and waiting to hear what my future held, to find out the results of my bone and brain scan.  Now that is one thing that bloody down right scares the crap out of me.  ‘The Brain’  I know I make a joke about actually finding a brain inside, after all I was a typical blonde, always been a bit dizzy, but can be quiet intelligent if need be.  Hey you don’t get a cap and gown and full teaching diploma’s at the young age of 18 for nothing. And then get awarded a full Honorary Diploma for the high standard of teaching in the same year.    Opps getting side tracked again.. Back to ‘The Brain’ Yes this area scares the shit out of me.  The thought of it invading that space and the side effects it can bring along with it is the one area that I would flip out over, and even though I have thought about this many many times, I have no idea, I would react.  Maybe numb, maybe hysterical, but fingers crossed, for me hopefully this day will never come.  So now you know, in 5 yrs, I have come out and said what actually scares me.  Come on now, I’m thick enough with all this chemo brain as it is and definitely don’t need the bloody squatters taking the last bits of my mushed up brain that works.

At 13.57pm the oncologist came in.  Notice the exact time?  I am taking note of actual times because of all the delays that have been happening lately.  Today’s oncologist wasn’t my usual Mr Nice one, but all the same she was really nice and apologised profusely for the delay.  We discussed my pain level and my daily activity, and phew thank goodness I could tell the truth and tell her I had been out walking the dogs and had been doing some gardening.  This she seemed to like, and looked over to my Research Nurse to give her the go ahead that I am ‘Fit for Chemo’  Good news or what?  Down side is that I will have to repeat my body CT scan because the last one has gone out of the time scale required for the Trial.  Stupid idiotic radiologist man, why do they not listen and think they know best.  I have to wait now for an appointment for the Scan before I can get a start date for Chemo. 

While in my oncologist appointments, I let the conversation take the path that it takes and don’t rush into the bits that you sometimes don’t want to hear.  I do this because otherwise, things that do get discussed, might not get discussed because the focus suddenly being on what I am asking, things like we discussed today, and the biosphonate pill that I have been taking daily for the past 2 yrs.  The biophosphonate is a bone strengther called bondranat, it helps to speed up the renewal process of the bone and when you have bone metz it’s a bloody good thing to have.   When I was first diagnosed with bone metz I was put on an intravenous form called Zometa, and today we discussed that because I will be having intravenous chemo that maybe going back onto the Zometa would be a good idea.  This would have to be checked with the Trial drug company as some drugs arn’t allowed when you’re on a trial.  The oncologist also said that to take calcium tablets and Vitamin D would be a good idea too.  This is when I knew that my bone scan was not good and that even though they and I already knew that there was some progression in my spine from the CT scan, I started to put two and two together from the pains that I have been having that my bloody squatters had been having a party.   The nitty gritty, we could not go through fully straight away cos the stupid dam printer was having problems and they couldn’t get the scan report printed out.  What we did have was the few short notes that had been written down in my file. 

Good news again. ‘My Brain’ is clear of cancer.  Pheww; to me that was the important one.  ‘There is more area’s of Bone Metz’  and when I asked where and how much, the answer came back ‘quite a bit’ but would go through it with me in great detail as soon as they got the report printed. 

In the meantime, whilst waiting for my report to print out at another printer somewhere in the big building of the hospital, I followed my Trial nurse and head off for an ECG, another test that was needed before commencing my trial treatment.  This was followed by a wee sample, my weight and height taken and then last but not least, my bloody pressure, temperature and pulse reading.  All that is needed to get me started now is the CT scan, which they have already put in the request as an urgent referral that hopefully I will hear straight after the long bank holiday weekend with a cancelation date.  Fingers crossed, it will be next week.

Now for the Nitty Gritty.... My Bone Scan results Report;  to be continued......