Infections and Delays

3^rd cycle of chemo started really well.  I had my day 1 chemo with the Herceptin and Zometa, rested for a couple of days and then made the most of the week ready for my day 8 chemo.  Day 8 chemo came and went, felt bloody fab, so much so that I went along to a wedding reception on the Saturday evening just 2 days after and stayed up till early hours or should I say late hours of the morning drinking my favourite tipple of wine. And I have to add here that I looked bloody good in my blonde hair and slinky sexy number that I wore, not one to blow one’s own trumpet but hey someone’s gotta do it. 

 

Monday 26th August is where things started to go wrong.  I woke up feeling a little tender around my reconstruction on the right side (my breast cancer side) as the day went on, my boobie started to go a little red and a little hot.  My temperature was normal but I decided that I would pop my head in to see my breast nurse the following day after my pain management appointment at the Hospice, before heading up the motorway 60 miles to visit my mum for a couple of days.

 

As soon as my nurse saw me, she did the whole blood pressure and temperature thing and gathered lots of blood from my port to be sent for testing From there I was seen by an oncologist who then sent me over to the breast clinic to see my (plastic surgeon) breast doctor, who then sent me for an ultra sound and before I knew myself what was happening, I was in private isolated room in a hospital bed with a drip going into me along with lots of intravenous antibiotics.   I was infected; but goodness knows where or how I’d picked up the infection.  On top of that I was also told I was Neutropenic. “Whats that then” I asked.. you would think by now they would stop using all these technical terms cos I just don’t know what they mean and even after they explain, I forget,  hence me telling people for a couple of days I was neurotic.   Anyway neutropenic, the correct word, is where the white blood cells are really low and it affects the body’s ability to fight off any infections.   I was put on nil by mouth and on the surgery list for the following morning depending on how I responded to the antibiotics through the night, at which point I was now on IV an aural anti’s, and had lovely black marker drawn all over my boob to measure where the redness and swelling was.  I escaped surgery on the Wednesday morning as the redness and heat radiating from it seemed to be fading, only to be put back onto fasting and the surgery list for the Thursday morning as the heat and redness starting up again.  I escaped surgery once more.

 

After 5 days of being isolated from anyone with infections, and receiving Intravenous antibiotics I was allowed to go home with some aural anti-biotics.  Mr Boobie Doc still warned me that surgery may be required but fingers crossed we had caught the infection in time.  I was seen a couple of days later and issued another 2 weeks of antibiotics to keep on top of the infection, still at this point, hopefully avoiding surgery.  Chemo was postponed and by now I was wishing that they had just took me into theatre on the same day as the infection was found because at least I could be having chemo and killing squatters and be back to how I was before all this infection stuff started.  The antibiotics gave me thrush, so had more antibiotics shoved down my throat for that and then I plummeted down with energy levels, couldn’t eat and was only useful at making the sofa untidy, or using up all the Kleenex and toilet roll in the house from my constant over emotional tear ducts.  All I wanted to do was sleep.

 

My breast doctor, who has been keeping a close eye on me, said that the antibiotics would make me tired and gave me a talking to about eating properly.  Easier said than done, when just the thought of eating something makes you feel sick.  I was living on glasses of milk and driving Lee mad as he was trying to tempt me with every delight available, such as pizza, Chinese and Indian, my favourite cousin.  He even failed with attempting me with even worse junk food (my favourite) crisps and chocolate.  I was put on protein drinks I counted the days away until the last of my antibiotics were taken.  As if on cue, I started to pick up just in time for my next CT Scan and Oncology appointment.  I was out sitting in the garden soaking up as much vitamin D as possible and having some nice quality time with Lee, Luke and the Dogs.  I was managing to keep awake for more than an hour at a time and this was a massive improvement.

 

The bruises from the previous CT Scan hadn’t healed enough and so doing something that were not supposed to do, opted to go for the side that I’d had all my lymph nodes removed.  We hit jackpot first time with a nice small but juicy vein that probably got the biggest shock in its life since it hasn’t been used are even acknowledged for 5 yrs. 

 

With the Antibiotics finished but still feeling quite tired, I told Lee that I thought maybe I would be better off delaying chemo for another week.  I didn’t feel ready and after talking to my breast nurse whilst taking all my bloods etc... She tended to agree.  I had it all sorted in my mind, I was going to take control of my treatment but then all of that went out of the window as I got carried away with my Mr Nice oncologist and my CT Results.  I didn’t expect much this time with missing a cycle of chemo, but to my relief, the cancer is still stable, with a bit of question mark as to whether there has been a reduction or not.  This depends on how the radiologist measures, as each one has their own way of doing it.  Saying that I am pretty chuffed that the cancer is at the very least stable with no change and not grown any.  Mr Lovely oncologist checked my now non-infected boob, reeled off what the plan was going to be which included to prescribe a daily injection to boost my white blood cells for 7 days after my day 1 infusion and then followed by 7 days of anti-biotics starting from my day 8 infusion to make sure I didn’t have a repeat performance of developing neutropenia and infection.  That was it, all sorted and before I knew it I was out of the door smiling, almost standing upright and looking forward to chemo tomorrow.

 

So much for me taking control!  Part of me still feels that I would benefit from another week off treatment, but another part of me is saying ‘get on with it and get some squatters squashed’.  I am left wondering how much reduction I would have had ‘IF’ I’d had the full 2 cycles between my 6 weekly scans, so i’m on a race now to complete the next 2 cycles without any delays to see how much more cancer can be reduced.  I’m still tired, but hopefully the injections to boost my white blood cells will sort this out.  

 

My normal routing for the night before Chemo has always been to have a relaxing evening with a nice glass of wine.  I have been tea total for 3 wks now and even though my antibiotics have finished I don’t actually feel in a wine mood.  Maybe it’s because I’m still run down and tired or maybe it’s that little voice in my head saying ‘Don’t want a hangover’ I settled instead for a mug of milky Horlicks.

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).

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

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......

Stick Your Tongues Out To Cancer

You never expect the least expected, especially when the unexpected is from a crazy bunch of ladies that I have had the honour of knowing through the support group  that I created over a year ago called ‘Breast Cancer Chatter’, along with a list of friends I have come into contact with on my breast cancer profile too.

It all started when I posted the not so good news regarding my CT Scan, immediately I received messages of support, well wishes and anything upbeat that they could possibly thing of with the majority telling me to kick ass.  There were however some messages of sheer shock and horror that my news was definitely not the news that they were expecting to hear, and through them I realised that they were indeed hurting and frightened to death for me.  I suppose with the added stress of losing some lovely friends to this awful disease since January this year already, the bad news like I had just received, just made them worry that things had started to go in the same direction for me.  Hey but come on!, this is me were talking about and even though the news wasn’t frickin great, I have not taken it has being the bloody freaking, panicking, losing my mind thing that I am going to die sort of news.  I see it has a sort of good thing, that my great team of doctors have been watching me closely and have been on the case of finding me my next treatment plan even before the results came in.  There is a plus side too, as this new trial that I about to embark on looks to be very promising indeed, and has had some amazing results so far with other patients who have been on it, and like all of us out there who have cancer, We live wishing and hoping for the cure, wishing that one day we will receive that one treatment that will obliterate our cancer to kingdom come.  So you never know; this could be the one for me.

I don’t like people worrying about me, and defiantly don’t like them being upset. You get upset only results in me getting upset and so, just as I was about to walk of the front door with my Bessie mate Pauline who was taking me to the pub for a good old drinkies, I took a picture of me sticking out my tongue, uploaded it to my facebook wall and captioned it ‘Ready for the Pub and Saying Fuck You Cancer’     My objective was plain and simple, it was merely to show everyone that I was indeed ok, and still the mad Kazza that they had come to know.  I had no idea what would become of it, and while sat in the pub later tucking into the biggest mixed grill ever that could have fed a thousand people and of course drinking my extra large dry white wine and soda, Pauline and I logged in to facebook to post on how our evening was going, what we saw had us in hysterics.

In just 1 hour the picture had received 31 comments and the whole wall of the ‘chatter’ group had changed in appearance, instead of being a normal support group of the girls chatting about breast cancer, asking for advice or just venting out their frustrations, I logged into find lots and lots of bloody great big tongues sticking out everywhere, and all of them saying 'Fuck you Cancer'. It didn't stop there either, pictures of monkeys, dogs, and cats started to go on too and then my profile wall started to get invaded with the what appeared to be one big disease of tongue mania.

Pauline and I had a fantastic evening.  I had lots of hugs from Pauline that she was ordered to pass on from everyone in the group and by the time we had gotten to the twentieth hug or so, Pauline and I started to get some really weird looks, which were obviously looks of 'oooh there lesbians'. Why is it that friends can't hug to show how pleased they are too see each other anymore, without it getting out of context, there was no holding hands or kissing, so the only reason I can think of, was my boyish good looking charm lol.  After drinking my 2nd glass of white wine spritzer and being total and utterly off my face pissed, Pauline took me home. Giving me an extra big hug as she left on top of the thousands she had already given to me.  The night was fantastic, who says you have to be morbid and miserable when you get bad CT scan results. Life is for living and having fun and that is just what I did.

The following morning (Thursday) my sides hurt with laughing. The group wall and my wall had gone completely bonkers with big tongues, little tongues, animal tongues, and multi coloured tongues. Laughing uncontrollably I posted an update to my wall 'change your profile pic and stick your tongues out to say fook you cancer for 48hrs' to see how many of my friends who really mad nutters.  Ha haaa, yup, ALL my friends are totally utterly bonking mad, their crazy, because as soon as I posted it, the tongues kept rolling in and fast.  Till today I had not realised how completely bonkers my facebook friends are, and yet they call me MAD KAZZA.m  How dare they call ME mad when they are doing things like this, you see it didn't just stop with just them, they were now sitting there families down and forcing them to stick there tongues out too, so pictures of nieces, nephews, sons, daughter, granddad's and even a newly born baby appeared.  I cannot explain in words how all this made me feel, but to try and tie it up into one little sentence, I would have to say ‘Bloody Special’.

On Friday I went along for my one super high dose of radiotherapy to my L6 vertebra of my spine.  Easy peasy, so I thought, well I have had rads to my spine before and knew all the ins and outs of it, such things as the pain can get worse before it gets better sort of thing.  Who the hell was I kidding? An hour after the rads, I started vomiting, another hour later my legs started to feel funny, the pain set in, but yet at the same time they felt all tingly and numb.  Hubby came running to the rescue, “You OK Girly” he shouted as he came running upstairs at which point i couldn’t answer through the snotty tears that were now rolling down my cheeks.  The tears weren’t the only thing rolling either, as I was now in that much agony that I had starting rolling around all over the bloody bed trying to get some sort of comfort and ease.   Lee tried to massage my legs for me, hoping that it would help, but I couldn’t keep still long enough to even give it chance.  Lee took charge completely when I went to get up for another wrenching session on the loo and my legs gave way, he rang the hospital.  Now my surname is Goodwin, I have been Mrs Goodwin for 2 and a half years, but oooh no, not today I wasn't.  Brilliant sexy hubby was in so much of a panic that he gave the wrong name, 'Karen Roberts' he spluttered out and then after a good 5 minutes of the nurse at the other end of the phone trying to find this patient names ‘Roberts’ that they had early, he panicked and very quickly tried to correct the mistake. 

Ironic, but I have now learnt that pain makes you sick, the more pain that you are in, means the more vomiting you will do, and that is just what happened with me, more, which then inflicts more pain from the wrenching of the stomach muscles.   To stop vomiting, you have to take non stoppy vomit pills, but how do you take them when you can’t stop throwing the buggers straight back up.

The plan was that Lee was going to drive me to the hospital, but from seeing me get worse so rapidly, Lee changed his mind and rang for an ambulance. Can you believe it; he gave the ambulance people the wrong blooming address. ok easy mistake to make, with us only living at our current address for a mere 8yrs , with the added plus of me never living at the address he gave either, and neither has he for over 10 yrs. Luckily he corrected it before hanging up the phone and getting back to me to try and massage my very pain full legs again.  He realised that he had still given the wrong house number. Now this is when I relished that my very sensible and in control husband wasn't in control at all and was in totally freaking out panic mode. Obviously with me crying out in pain and demanding he take the pain away from me didn't help him.  Must make a note for the future... DO NOT PANIC HUSBAND.

The paramedics hadn’t even gotten up the stairs when I was shouting out for morphine or anything else they had to get rid of my pain, Gas and Air, went down a treat and my fear of needles completely vanished as I shouted ‘Just stick it in me’.  With the fandabadozy morphine working its way around my body, I got my first free and only one I hope, ambulance ride.   Some more morphine later and a partially deaf ambulance driver and paramedic from all the jabber jabber I was doing on the way to the hospital, which is a norm for me to go full speed ahead of talking absolute nonsense when I get into a panic, I was admitted onto the hospital ward and waiting for doctors to come ad assess me.

Doped up with morphine and pain meds sure does help with pain, it helps with hallucinating too and at 2.15am, I was happily watching and laughing away to the dickie birds perched on the curtain rail that was around my bed singing 'come fly with me'. Ha ha so know I know that I have definitely gone off the rails and will definitely be admitted into the Phyco ward very soon.

The sticky out tongue pictures and comments that were still being bombarded across Facebook kept me laughing and on Sunday evening I got another shock. Talk about playing on your emotions, the lovely Kate Harbridge linked and tagged me to a short video she had created. A video of all the tongues that had been sent and were still circulated profile pics, all played to the music of 'we'll stand together'. I cried and I laughed and I cried some more realising that not only was I there for all these girls, but that these girls had pulled out all the stops to show how much they cared and are they for me too.

(update on 20th May - sorry the video has been made private cos someone complained WTF)

How does anyone want to spend a back holiday weekend and bank holiday Monday, well a hospital bed is not the place that you can have your normal bank holiday nutty days experience, saying that, even though my pain seems to be controlled with the endless amounts of pain medication to the extent that they were now keeping an eye on my pupil size (size of pin pricks due to maybe slightly overdosing on the stuff) not to mention the red bloated face from the addition of steroids. This hospital is where I actually want to be as I know I'm in the right place to get the right pain relief I need and the checks required to make sure everything is as it should be internally. ( roll on tomorrow for my MRI.)  

Left to Right
Pauline Edewards, Pauline Castledine, Penny Stanton &  Dawn Sheldon

Anyways visiting times has never been a big deal for me, my family love nearly 70 miles away and so it's usually Lee rushing back and forth to try to keep me occupied as much as possible. Today, Pauline turned up first, then my mum with my younger brother Neil and his future wife Kez. What more could I have wanted. (to be out of pain and in the pub would have been nice but...) An hour later, and an almighty noise hit the ward 'what the feck' I though and as unturned round 4 familiar faces appeared through the doorway. Dawn Sheldon, Kate Harbridge and Penny Stanton, who I have up to now only know through the virtual world of facebook and they were accompanied with the nutty Pauline Edwards.  Fully equipped with bottles of vodkacillan and vinocillan that they had kindly drank on their long journey getting here, they also had badges of special instructions of vodcacillan to attach to my drip line bag and not forgetting a space alien gun to shoot down my hallucinating dickie birds from the curtain rail late in the evenings.  My quite little ward was no longer quiet as these amazing girls told their stories how they got there from different parts of England and Wales. Pauline Castledine was in on the secret the bugger.

Left to Right
Dawn Sheldon, Me, Pauline Edwards, Penny Stanton & Kate Harbridge

I felt a bit awkward at first as my mum and family had come for a visit, and probably wanted to talk about serious stuff of how I am actually doing, about the pain and about what the doctors were saying, but what could I do? The girls had them laughing too in no time so I am hoping they were ok with it all and had as much fun as I did.

Vodkacillan and Vinocillan

Laughter is the best medicine and even though I felt totally drain after everyone had gone, and fell off to sleep within seconds I felt good, the feeling that I am loved by so many and that I am not alone in this journey of fighting the blastered squatters.

My gorgeous hubby arrived for the last visiting at 7pm with Luke, a nice quiet visit which consisted of them polishing off all my grapes that our Kez had brought in earlier.

I am laid in bed now totally knackered and reliving the fantastic day that I have had over and over. All off you made my day so special, you made me feel special, and over this past week since getting my scan results you have a been there to help me through and kept a smile on my face. I love you all xxxx

P.S  sorry if its a bit ga ga, I'm bloody stoned lol

CT Scan and Friggin Crap

I know I haven’t uploaded my cycle 6 chemo yet but what the heck, I suppose I can do it later.  I just have to get a few things off my chest and in perspective.  Yesterday I went along to have my every 3^rd cycle of chemo CT Scan which to be honest I already had a real gut feeling that I knew what the results were guna be, with what I ending my post with on the 22^nd April: cos at the moment my mind is doing the over drive bit. Its cancer in my rib cage, its cancer under my arm, its cancer, its cancer, its cancer and its fooking growing out of control which means that the chemo aint working.

Let’s face it, when you come from someone who has had moderate pain with some days that have been totally pain free, to someone who has been in excruciating pain which is constant and getting worse by the day, one has the ability to know one’s body.  Firstly, there has been my back, Ok yeah so I know the cancer is in my spine, it has been since April 2009, but that has always been in the Cervical (Neck) area and a few lesions in the Thoracic (upper back) area and since I had the radiotherapy and the spinal fusion surgery, I haven’t really had much problem.  The pain that I have now has me doubled over.  I have been unable to sit comfortably, been unable to straighten up as I walk, climb stairs or even turn over in bed.  The pain spread into my left hip area that has felt like it’s going to pop out of its socket at any moment.  Lee has had a back problem since I have know him and earlier this year found out that he has an old fracture to one of his vertebra and 2 prolapsed disks.  He has watched me endless times try and lift up off the sofa, hang on for dear life as I’ve tried to climb the stairs and watched me twinge with every move.  I have been blaming this pain on my hip, and been thinking that the cancer has spread there, but Lee however has said differently and told me many times that the pain sounds like it has come from my back but from holding myself different to relieve the pain, it has caused muscle tension in my hip.    

Then there has been the pain in my chest, my right breast or should I say, manmade boob, well the pain went from there to under my arm and felt like I had boulders pressing deep down on me.  This pain was new and even though I have tried to shrug it off and diagnose myself with having lymphodema because the pain then spread up through my neck nodes, to my ear and jaw, was still in my mind that maybe it could be the cancer that has spread.

For my last cycle of treatment my brilliant oncologist subscribe me some new pain relief as the only effect that the oramorph and gabapentin were having, were sending me bloody drowsy.  The new stuff of OxyContin and OxyNorm are working and this past couple of days I have started to feel more normal.

Well you don’t want to hear me gabbling, so let’s get straight to it.  My CT Scan results are as follows:  Chemo not friggin working and I have progression... and of course me being me, I had to ask, how much the awful stuff wasn’t actually doing the job it was supposed to be doing.  Today I say Lady Oncologist and she hesitated at first, probably because she didn’t want to upset me.  Surely she should know by now that I only get upset when things are kept from me or they fuck up.  Well come on, you don’t start an oncology appointment with “How have you been this last 3 weeks” when you know there are bloody results to read out.  Nor do you start off the conversation by saying “Has Mr Nice Oncologist mentioned to you about the Herceptin Trial” Now when they start talking different treatments, you know dam well that what is said on that pathology report is not really what you want to hear, but at the same time you want to know every intricate detail of what is on it, and so   I cut out all the crap, (Ha ha, and here I am doing the same and giving you all the crap first) anyway I’ll carry on, I blurted out “My CT has shown progression ain’t it”  Lady Oncologist, gave me a little concerned smile and whispered “yes”.  “So the chemo ain’t working” I gabbled on trying to make out that I had full control of how this appointment was going to go.  “No” she once again answered with her very quietly spoken voice.  Now some peeps will leave it at that, and oooh I have done in the past, but 5 yrs makes you into an information gobbling person that wants all the nitty gritty no matter how unpleasant it is.

Ok, so here goes; there is further progression in my liver, further progression in my spine and has spread down to the lumbar area (ha ha friggin back pain is explained), there seems to be no evidence of cancer in my left hip but Mrs Onc said that the way I have described it would tie in with the lumbar vertebra that has mainly been effected, I think she said L6 but don’t quote me on this cos by now my brain was going into overdrive and trying to get the question out about my boob and underarm.  Should have kept my gob shut as usual, as the answer is what I already knew.  Probably metz to the rib cage. 

Radiotherapy is being booked for my lower spine.  I will have one good blast at it and whey hey; it will most probably give me diahrea, because my bowl is in really close proximity.  Why do they always use the words ‘Most Probably’?  

I had a real good chat with the research nurse, who explained in great detail about the Herceptin Trial that I will be going on.  The trial is called ‘The Theresa Study’. There are 2 groups to this study and I will be randomly selected by chance for one of the groups. I will have a 67% chance of being picked for group 1.

Group 1; will receive the new wonder drug ‘Trastuzumb emtansine (TDM1)’ which is the experimental drug that is the Herceptin but with the added ingredient of a chemo.  Now the herceptin part works in the exact same way of blocking the cancer from eating the protein by putting a protective barrier around it, it’s at this point that the chemo part kicks in and attacks the cancer cell.  

Group 2; will receive a treatment regimen selected by my physician which is called TCP (Treatment of Physicians Choice) This could be a number of things, and would include Pacletaxol if I hadn’t already had it, and listening to Joanne my nurse think that it would be Carboplatin if I was randomly picked for this group due to Mr Nice Oncologist discussing it with me the last time I saw him.

My nurse explained the protocol and said that once I had signed the paperwork, the ball would be set rolling for the numerous scans and stuff that had to be done before treatment commenced.  I signed and initialled every little box to get things rolling and so now I wait to go have an ECHO on my heart, a BRAIN SCAN, a FULL BODY CT SCAN and a HEAD TO TOE MRI (Bone Scan)

Lee thought that maybe I should do what I’ve always done and take the form away to read first, and bring take it back tomorrow signed, but why bother, I have always finished up signing before and like any trial, if I decide I against it, I can withdraw at any time.  When I get to this place, the place of waiting, I bloody hate it and its all based on the facts that previous treatment hasn’t worked and there has been progression, so the weeks that it can take to get started again can only result in one thing and that is more further progression.

I am not down about the news, I know my team of oncologists are always a few steps ahead, which has been proven today as it was 3 weeks ago with Mr Nice Oncologist asking and double checking with my all the treatments that I have and haven’t had.  Apparently it sounds as though he already knew the outcome of my scan and just needed the confirmation of the scan to get my treatment plan changed, as 6 weeks ago, he told me that my tumor markers had come down.  Mrs Oncologist today, confirmed that they had gone up considerably at my last appointment 3 weeks ago and have still climbed over this last 3 wks.

I think the most scary thing right now is that very soon I will be having all these scans and will very soon know the exact situation of how much cancer there is in my body. It’s been a bloody long time since a bone scan was done of my whole body, as all MRI’s have been to check that my bionic parts in my neck are still bolted in place. Over this last week I have been telling myself that the pain that I have been having around my back and hip could be arthritis, well it could be couldn’t it, after all I have been post menopausal for 5 yrs and in the high risk category for osteoarthritis especially with the added factor that it blooming well runs in my family.  On the upside, at least I will know one way or another if all these highly probably cancer areas are in fact cancer. I will just have to wait and see and still having the same attitude that I won’t worry until there is something to worry about, for now I am not worrying.  

I immediately phoned my mum, who surprisingly took it very well this time, normally she goes off into chunter mode while I try and explain everything.  Ok so what if I go around a roundabout 15 times to get to there, but I try in my own way to put things in the best way I can without frightening the crap out of everyone. As promised I text Pauline mi bessie mate and then text my future sis-in-law who replied back in seconds that she was in tears and wanted to give me a big hug cos she bet I needed one.  With the sounds of it, she needed the hugs more than me and knowing my mum more than she realises, probably she could do with some too.  Yeah it’s ok saying that I hide things, you lot are the worst there ever is.  Well from me anyway.  As for Pauline, the softy, I am now looking forward to having a great big hug from her when she picks me up at 6.30pm to take me for a bloody long awaited drink.  Tonight was either guna be a celebration or a lets just pissed for the sake of it.  I have approximately 4 weeks of no treatment, not crappy chemo and I bet you have guessed this already, I’m guna make the most of it, enjoy every moment of my energy levels rise again, stuff the pain meds and suffer the consequences cos this girl is taking her life back and guna have a bloody good drink and start drowning these unwanted squatters.

Great timing of the brilliant Tess in the Radiotherapy department, just received a quick phone call from her to say that I will be measured up for rads tomorrow at 2.45pm and will have my one blast at 10.12am Friday.