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......

Waste Of Time !!!



You would have thought that after 5 yrs I would be used to the uncomfortable chairs and long tedious agonising waits for hospital appointments by now wouldn’t you, well for the majority of time I have.  I have been intent on putting aside half a day for a 5 minute appointment, I have also on occasions been intent on putting a full day aside for the very same 5 minute appointment because; we know for a fact that a hospital appointment is not to say that you have an appointment to be seen, it is there to say, get your ass up to the hospital along with another 10 patients for the exact same time appointment as yourself, and we will see you we get round to it.  I accepted this routine a long time ago, but when you’re in agonising pain and doped up to the friggin eye balls on pain relief, the last place that you want to be is sat bolt upright in a hard uncomfortable chair.

Sometimes the waiting gets the better of you, which is what happened last week.  I had 2 appointments on Tuesday 22^nd and a further 2 on Wednesday 23^rd.  2 hours into the waiting time to see my oncologist and was I was getting absolutely piggin bored stiff of playing my solitaire and losing badly, not to mention that my arse had took the shape of the seat perfectly and was totally numb, I sent Lee to get me a snickers bar from the coffee shop.  What else are you supposed to do; I couldn’t go out for a crafty fag, cos you could guarantee that I would have been called in, It’s like they have a radar implant in you somewhere bleeping constantly ‘Patient has left the building, Patient has left the building’ and then they get in there quick, resulting in you missing it and then having to start the whole friggin waiting period all over again.  I wasn’t supposed to eat either, I was on a 4 hour fasting for my CT scan later, but this sitting and boredom was just doing my head in a little too much, and when Mr Boredom peers round the corner, the only thing I know to do is eat or smoke.

Tuesday; It was 2.30pm when Lee and I were ushered into one of the side rooms.  Now this is where they try and trick you, make you think that it’s your time, when in fact they put you in these rooms to make you think your being seen, but leave you there for another half an hour to stare at some other walls and other smudges of dirt that are smeared across the doors ways, walls and skirting’s.  Today’s side room was also used as a store room for all their little gadgetry stuff, boxes of sterile wipes, plastic syringes, needles and boxes and boxes and boxes of gloves.  “We could do with some of them” Lee said looking over at the gloves. I laughed and said I wished I’d brought my big bag, cos they would come in handy for him washing the pots, get the him washing the pots bit, ha ha, I have one well trained hubby.

I was relieved when Mr blooming amazingly nice oncologist walked in.  He always makes me feel better, has always been honest with me and is one of the few doctors that I actually have any trust in.  Mr Nice Oncologist always likes to hear it from me why I have ended up in hospital, rather than just reading my notes and so the discussion was started.  My nurse was stood by, waiting for him to get round to doing a full body examination that she needed desperately to get me on the Wonder Drug Trial and to pin him down for my treatment plan (just in case I wasn’t picked out for the wonder drug), but just like my life for the past few weeks, or is it months now, I can’t remember, but anyway, things did not go to plan.  I thought I would be walking out of there with a date to commence treatment; instead my whole appointment was discussing my pain medications, dosage and referral to a hospice pain management doctor.  Mr nice oncologist told me he would not approve me for any treatment yet and needed to get my pain managed first. And so because of the stupid radiotherapy, I am now being delayed from treatment, which I can tell you is bloody frightening.  I have gone 5 weeks now without having anything. 3 weeks according to by hubby cos he says my last dose would have worked up until that point, but the fact is, I am having nothing to try and control the cancer.   My scan 4 weeks ago showed that I have further progression, so it comes hand in hand that going without treatment; the friggin squatters are not going to be stopped in its tracks and will continue to grow. 

As you can imagine with my emotional state lately, the tears started over flowing.  Mr Nice and perfect bedside manner oncologist brought me a box of tissues. I hate crying in front of him, Dam, I hate crying in front of anyone because it shows my weak side, which is exactly how I have been feeling for the past few weeks/months.  My appointment ended and I was given a prescription of quadruple strength pain medication to what I have been on and another appointment to see him on the 31^st, just over a week away.  

An hour to spare, and so I hobbled as fast as I could into the car (can still beat a snail so that is something) and went up the road to the Citroen dealer.  Roll on new mobility car wooo wooo.  Still not decided which one to go for, but it definitely won’t be another one of these C3 picasso’s, talk about rock and roll, you can’t go round a roundabout without rolling off the seat and into the door or the driver, and with the pains that I am having at the moment, this is definitely not a laugh about happy thing.

Back at the hospital, CT Scan and then hurray I could eat cos right then my stomach was grumbling that load I think it could be heard at the other end of the M1 and was being mistaken for some sort of road works. With not many patients waiting, ooh 3 in total, I thought this was going to be a quick get, stabbed, scanned and out, but oh no, why change with the way today has gone so far.  2 frickin long stupid hours and nearly an hour of that was me sat on me lonesome in the waiting room with 3 nurses stood around talking, which got me more infuriated because I was having to play dodge the stupid head from the one who kept standing between me and the bloody TV screen.  Lets face it, Location Location Location was on and if there is anything I like to watch on TV apart from my Corrie, is having a good bloody nosey inside someone else’s house.

My CT scan didn’t go as planned either.  The request was to have a full body scan and a brain scan, but Oh no the radiologist of the department decided it was way too freaking soon to have another one of the body (with the last one being 4 wks ago).   I was left strapped to the strolley while they tried to contact my nurse to find out what to do, even though I was at this point actually screaming at them that the full body was needed to get on the Trial.  I laid there with tears rolling down my cheeks.  The whole few weeks rolling around inside my mind, the pain, the waiting, the frickin squatters growing, the radiotherapy, the hospital visit, the Chatter Group palarva and not to mention the ‘Dr X’ situation.

The appointment ended of them just scanning my brain and being told that they would check if the body had to be done and if so, it could be done the following day while I was at the hospital having my radioactive bone scan.  Now correct me if I am wrong, but if the radiologist didn’t want to do a CT of my body because of the radioactive I’d already had 4 wks ago, then doesn’t it sound a bit hypocritical that he would be happy to do it when I have had a great large syringe full of radioactive pumped into my veins for the bone scan?  Bloody hypocritical if you ask me.

Wednesday; Lee and I decided that rather than both of us sat around waiting, that he would just drop me off at the hospital and I would ring him when I was done and ready to go home.  At least this way he could get some jobs done around the house, rather than wasting the precious time stuck to an uncomfortable chair.  For my bone scan, I was shouted through within half an hour whoopy dooo one for the Guinness Book of Records me thinks.  The first stage was to find a vein that had been left for them to use from yesterdays CT palarva (they stabbed 3 times).  Today they stabbed twice and injected the radioactive substance from a space age metal syringe.  After telling me the do’s and don’ts of not using public toilets (as I would crack the basin and probably scoot through through the air from the explosion with the loo still attached to my arse) and keeping away from children and pregnant women, I was free to go and fill in 2 and half hours for the radioactive substance to work its way round my body before heading back to have the actual scan done.  

Not wanting to waste any time sitting around, I went over to the Research Trial Clinic, to have my bloods done and my portcath flushed.  That in itself was a quick in and out.  So now what to do?  I couldn’t get a drink or a bite to eat cos I’d forgot my bloody purse.  Ha ha, Lee came to the rescue and drove back, handing me some dosh so I could go buy a picnic, well I would have thought I could have bought a picnic, but with the NHS blooming prices, I ended up with a sandwich and a small bottle of orange which the lady at the back of the till finished up having to put 5p in the till for me.  I sat outside in the sun and felt pretty good.  Pain was at a minimum and the heat from the sun relaxed me.

Back at the bone scan department I had to check with them that they had marked me back as returned as an hour went by.  Do they not realise we have better things to do with our time and do they not realise that we probably have more appointments to head off too after they have done with us.  Time was ticking on and I was beginning to wonder if I would get to my Heart Echo on time.  

There is something about Scans, whether it is an MRI or Bone density, but its a natural thing for me to nod off and take in some Zzz’s.  It probably has something to do with the equipment being so close to my bloody face that I have to close my eyes so no freaking out is done.  I hope I don’t snore, but what the heck, the machines are that blooming noisy no one would hear anyway.  The full body was done and then with the additional area’s they wanted to scan (pelvis and chest) I was done, the whole scan process took just under 60 minutes, leaving me 15 minutes to get to my Heart ECHO scan.

Now I really lost my temper.  After heading up to where they normally do the ECHO’s, the place that I have always had my ECHO, and after sitting for 15 minutes waiting for the receptionist to get off the phone to his mum, I was greeted with ‘you’re in the wrong place’  ‘What’ I thought, I had just come up 4 flights of stairs (ok with the aid of a lift) but that does not change the fact that I had to go back all the way to virtually where I had just come from and let me tell you , that corridor is as long as the A1.

I couldn’t find the place I needed to be and was getting angrier by the second, and very tempted just to jack it all in and go bloody home.  Best thing is Mr Nice Oncologist won’t let me have treatment until my pain is sorted; he said I needed to get plenty of rest and makes sure I took all my pain meds at the correct regular intervals.  How the hell am I going to get it sorted when I am traipsing around from one of the hospital to the other for 2 bloody days on the trot?  Plus I had popped ALL the pills that were in my bag and felt like I was turning into one of them junky drug people who would do anything to get a quick fix.

Eventually, I was laid on the coach with my top off and little sticky pads stuck all over me, with an ultra sound probe prodding around my left breast.  People don’t realise, but by having implant reconstruction, it makes it blooming well hard to get clear pictures of your heart.  Apparently the stuff inside the implant distorts, you can see the heart, you can see it beating, but to take measurements of the muscle etc, is just a mere impossibility, with the only way of getting the images is to stick the bloody probe deeper and deeper into your ribs, implant, stomach and jugular.  It’s one of them times that you would swear blind that you will walk out the room with a couple of cracked ribs and a burst implant.

It feels that my week has been taken up with a lot of time wasting, sitting around in a bloody hospital when I could have in fact been laying on my garden lounger in the glorious sunshine that we are having.  It hasn’t just been wasting time at the hospital, its been knowing what to do with my time when I am at home, I can’t be arsed to watch the TV, or do anything. 

Normally on occasions like this, when I am more immobile than usual, I take to facebook and spurring on and supporting people, makes me feel that I have actually done something constructive, but with my facebook gone, I have nowhere to go.    I received an email notification that even though my fb was inactive, I had been added to a group, then another email came through and another, so I logged on to remove it and stop my mobile phone flashing up every few minutes with stupid bloody emails.  I got the shock of my life.  The person who had caused my Chatter Group to close down had created a group; it was created just 2 days after me closing Chatter down.  Now you may think, well the girls need somewhere to go, I did too, but what got me was the post from the so called, what I used to think was a friend.  She had wrote “Lets keep this group secret cos I think Karen has had a Mental Break Down” What the Hell!!!   Ermmm ok, I have had a lot to deal with lately but for someone who is as fooked up as her, definitely does not have the qualifications to diagnose me as having a mental breakdown, plus if I had, it would have been all her doing.  Again this person got me bloody angry, which I got even angrier because the girls were agreeing with her.  To me a true friend would not have kept this secret, they would have told me.

I had a lovely evening at Pauline’s on Wed evening (23^rd), I cried on her shoulder a few times and we discussed my BreastCancer profile and Chatter.  Thanks to Pauline, she kicked me up the ass and made me see things from another point of view.  She was right, why should a lot of the women lose out because of one person.  After 2 glasses of wine (first in months) I felt better and agree’d with Pauline that I would reinstate my BreastCancer Karen Profile, but I would cut all ties from the person and that would involve removing any mutual friends that we had.  

I know I can be a stubborn cow, but the point of the post title ‘Waste of Time’ is just this.  I have to waste precious time waiting around in hospitals. I have to waste precious time, sitting in traffic getting there.  These waste of times, I know are a part of my life and without them I probably wouldn’t even be here writing this.  I have no idea what the outcome of my scans are as yet and no idea what is around the corner, but the one thing I can control is the time wasted on people who just don’t deserve my time or effort.  Like I said in my previous post; I felt alone and abandoned.  Re-activating facebook showed me I wasn’t alone and it took me days to go through the messages that were left.  I removed anyone that had anything to do with the Author of the book and will admit, I felt guilty by removing some of them.  We were friends long before the Author, but I felt that if I left one person, then it would give the others more ammunition to throw at me.  So if you are one of the people who were removed, I hope you understand, I needed to cut all ties with the author, the whole ordeal knocked me for six and seeing who I thought to be friends agreeing with her, put me on the whole ‘I don’t know who can trust thing’ As the saying goes, True friends will always be there, no matter what and as for the time wasters, well, No more time is being wasted from me, Cos this bitch is kicking back.

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.