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......

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.