It's amazing how a few good days can make you forget. Why was I complaining and moaning so much about the chemo and why the hell did I not take my dose on day 8, becuase thinking back now, makes me feel like I was being a bit of a drama queen. The thing is; I may have blocked it out of my memory it could be that the part of my memory that stores this sort of crap doesn't exist anymore due to the massive attack of chemo brain that I definately have. Lee hasn't forgotton though, and the way that my oncologist could be told everything was for my lovely hubby to come with me to make sure.
We got a little form to fill in at the Oncologist today from the receptionist, which is probably down to some patients complaining constantly about the never ending delays that have been going on lately. The time of my appointment had already been filled in (10.00am) and it was my job to write down the time I got to see the onc and the time I left. You'd have thought, seeing that there were only about 6 people in the waiting room, baring in mind, some are only there to see the blood taking nurse, we would have been seen quicker than the usual daily outing at the place, but oh no, It didn't take all of the past 5yrs for me to suss out that your appointment time, is just to get you in through the hospital door and be accounted for, times don't matter in these places, all that matters is that we get to see our oncologist, have a good old moan, receive good or bad news and hopefully walk out of there with a smile on our faces that things are going our way. Anyway 11.00 am (1 hour) later and i'm doing my half bent over stagger following my nurse in to see my Onc.
Ok so the good news first, CT scan says liver Metz stable, but Mrs Onc says at a closer look, some of the lesions appear to look smaller. Wowee fandabadozy.
Next; how have I been; "Ooh ok now. Is it possible to lower the dosage" is all I could think of saying, rather than starting with the 'oh I've been so frickin bad'. Mrs Onc immediately said no to reducing the my chemo dose, becuase it's working, which sent me flying into super panic mode and thinking; friggin shit, I guna feel like shit for the rest of my life, and so being the big baby I am, tears started to fill the bottom of my eyes as though they were 10 gallon buckets ready to over flow. This is when Lee butted in "oh but it's not" his usual manner of not thinking before he opens his gob. Mrs Onc looked at him gone out, which isn't suprising "well it is, but it isn't for Karen" Lee continued to gabble on after seeing the look of sheer horror on Mrs Onc's face. It's working but it's Not!!! Now I thought I was bad but this just had to beat all the fooked up crap that I'd been coming out with lately. In great detail both Lee and I tried to explain about the diahrea to the point of being incontinent during the first 24 hours of taking the chemo (ok I've said it, I have shit myself, get over it, I have), we told her about the nausea, the tiredness, the constant aching of my bloody joints and back, spotty gob, friggin high temperatures and not forgetting the bit about me having the crying session of the year, and threatening to throw the bloody towel in. After hearing everything Mrs Onc, kindly agreed to lower the dose, but only slightly and started to fill out a prescription of goodies for me to hopefully get shut of my incontinence and spotty gob whilst giving me a telling off for not ringing the hospital with a temperature of 38.8.
Are you supposed to mention lumps that appear in your fake boobs? Well I do, before xmas I mentioned that I had found a small one near my mastectomy scar. Initially my team of doctors told me that it was probably a re-occurence, frighting the hell out of me, but then was told after my last scan results had come back that nothing had shown up so it was nothing to worry about. I put it out of my mind thinking it was scar tissue or something, even though its been 5yrs since my mastectomy and 2 yrs since the last tweek on my recon.... Anyways; another small lump has popped up, plus I keep getting a sharp pain around my portacath site so I queeried with Mrs Onc if scar tissue can still develop and do portacaths have a sell by date. Please remind me in the future, to keep my big gob shut., as Mrs Onc kindly explained to me that The lumps are so small that they wouldn't even show up on a CT, and that they were in fact a very very high friggin possibility of being a local reocurrance. Now forgive me if I'm wrong, but for own piece of mind wouldn't be wise to have an ultra sound done on them, to find out one way of the other, to see what it is were dealing with here. You'd have thought so, but ooh no, having a local reoccurance isn't any where near as important to having multiple liver Metz, not that I'm saying it is, but hey, its still friggin important to me., and I just wanted to know one way or the other, but it seems that the hospitals aim is to control the liver metz and prevent it from spreading to other organs. I wanted to know one way or the other so the appointment was ended that I do have a local reoccurrance and the pains that I am getting from around my portacath could be 'get the COULD' scar tissue or cancer that is causing my portacath to push more to the surface of my skin.
I'm relieved that my chemo dose has been reduced, but the whole appointment has left me with a lot of questions. IF and I say IF the chemo is working as shown from my CT scan then how can the lumps in my tit be cancer. Surely if that was the case then this new lump wouldn't have popped up. Then there's the other way of thinking, what if it is cancer and CT Scan hasn't scanned right, so the results are showing something that isn't actually happening. Let's roll back here for a mo; last year after 3 cycles of Capecitabine chemo, a scan revealed that the liver metz had gone, 3 more cycles later and the liver metz are back and in the exact same places as before. Mrs Onc was even confused by this and said that the Scan had probably missed them the previous time, the clear time and so she would investigate. I never really got an answer to what happened, and still don't know if the liver metz had ever gone or if the machine messed up. So with this in mind, I am bound to into hyperdrive thing all sorts of scenarios' of fooked up crazy machines gone and conspiracy theory's.
I'm relieved that my chemo dose has been reduced, but the whole appointment has left me with a lot of questions. IF and I say IF the chemo is working as shown from my CT scan then how can the lumps in my tit be cancer. Surely if that was the case then this new lump wouldn't have popped up. Then there's the other way of thinking, what if it is cancer and CT Scan hasn't scanned right, so the results are showing something that isn't actually happening. Let's roll back here for a mo; last year after 3 cycles of Capecitabine chemo, a scan revealed that the liver metz had gone, 3 more cycles later and the liver metz are back and in the exact same places as before. Mrs Onc was even confused by this and said that the Scan had probably missed them the previous time, the clear time and so she would investigate. I never really got an answer to what happened, and still don't know if the liver metz had ever gone or if the machine messed up. So with this in mind, I am bound to into hyperdrive thing all sorts of scenarios' of fooked up crazy machines gone and conspiracy theory's.
I just wish that I could see the same oncologist all the time, each one has a different way of doing this, ie.. Mr nice oncologist doesn't require me to have additional bloods before taking my day 8 chemo as Mrs oncologist does. It was Mr nice oncologist that said my boob was fine after the scan and Mrs oncologist has from the start and still says it is cancer, so which one is correct. Have I got it wrong about Mr Nice and Mrs oncologist.
