Wednesday 2 May 2012

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 3rd 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 22nd 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.

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