Local Re-Occurrance

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 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.

Day 2 Cycle 1

I so didn't want to get up out of my warm snugly bed this morning. I knew the time was 8am from the enoying sound coming from my iPhone alarm. Trying not to open my eyes too much I peeked at the window, I'd heard the rain and wind hammering hard against the window and the outside of the house but hadn't realised how bad it actually was. It was still pitch black. There's only one thing worse than getting up when it's cold and that is when it still looks like the middle of the night. Sneaking my hand out from underneath the duvet, I grabbed my phone and hit the snooze button.

Lee woke me next, reminding me that I needed to be up and after not stiring he commenced by getting the dogs all wound up. "mummy's awake" he kept repeating. Immediately Max had jumped on my head, digging frantically at the duvet to pull it away from my face so and licking me so much that I would surrender into stroking him. As soon as my arm stretched out towards Max's head it was greeting with the big wet slobbery kiss of Molly's huge tounge.  That was it, I was awake.

It was now 8.30 and Lee was up putting his dressing gown on and making his way downstairs. I laid there, waiting and listening for the simple click of the kettle being switched on. I wasn't disappointed either and I as soon as I heard it, the sound then went to mugs clinking together. Yeahhh I smiled as I once again snuggled under the duvet.

Sitting up in bed with a freshly made coffee is something just short of being in heaven, especially when the weather is as dreadful as it was. The only downside was the the coffee tasted bloody awful, my stomach was churning something terrible and each time I took a sip, I was holding back the gips that were developing.  Poor Lee, he goes out of his way to make me a coffee in bed and this is how I repay him, by sneakily pouring down the loo. 

I had my appointment with the Newleaf lady at my GP's. (ok ok, i'm trying to quit smoking). At my last appointment (first appointment) my carbon oxide reading was at 13 the number of a definate smoker. Up until last week I was good, having just the odd one as and when I really fancied one, but then the xmas partying took hold. Thankfully I was back to being good yesterday and had a total of 4 ciggies all day. The cravings arn't what I would call cravings, I think of having a cigarette and then think, no i cant have one, then immediately change the phrase to; I don't want one. Once this process is done I'm happy and then don't think about them again for quite some time, probably about 2 - 3 hrs later.

This morning I had the same routine of thought, cup of coffee goes along side a morning ciggie. Refraining I was hoping that I would get a food carbon oxide reading, not that I thought it would be make much difference and be much lower than the last time with all the Xmas smoking I had been doing. Surprisingly and so utterly shocked I watched the little digits go up and stop almost immediately. My level stopped at 3. A level that indicates a non smoker. (whoopeee doooo).  To hear this is an incuragment but the fact still remains is that I still look upon myself as a smoker and still am one unless I can give up these last couple of ciggies that I have a day.  During the appointment I started to feel a little queasy and wanted so much for it to hurry up and come to an end ( and no it wasn't because I lied about the ciggies). Luckily I was given another prescription of Champix along with an apointment for 2 wks time and I was free to go.

With that out of the way there was time for another cuppa before heading out to Lee's appointment at the physiotherapist. Again no ciggie (arn't I a good girl). But I did take a couple of anti-nausea tablets. I must remember to take them for the full day 1 and day 2 on the next dowse of my chemo pills, then hopefully I won't get this awfull sicky feeling. Lee's appointment took nearly an hour. I sat in the car and waited just across from the surgery building, playing solitaire on my iPhone. Half way through the first game I started to feel a little dizzy, only when I concentrated on the phone screen though. I'd taken the sicky tablets so either it was because they hadn't started working yet, or maybe it is a side effect of the chemo OR just plain and simple I NEED TO PUT MY GLASSES ON DIZZY.

I'm not sure if I'm still tired from the New Years Eve Partying or if it's the chemo tablets or even the anti-nausea tablets but I could sleep for England. After arriving back home from Lee's appointment and getting stuck into the biggest bacon and egg butty ever, I was fast asleep within half an hour, sprawled untidily over the sofa, still with my thick jumper and knitted shawl. I awoke tossing and turning, surprising myself that I managed to stay on the sofa in the process and not ending up in a big heap on the floor. My hair was wet through which was a pure sign of the central heating had now heated the house and having too many jumpers on. After stripping off and having this time a mug of hot chocolate I was back in the land of Zzzz's

It wasn't until 4pm that I surfaced again. So much for making the most of my life, living it to the fullest and all that crap. My life seems to be spent here on the sofa, indoors with the same four walls to stare at. Not that I wanted to go out today, the wind and rain was that strong I don't think I would have had the energy to stand up. I'm not moaning, far from it. You see this is only day 2 of the chemo cycle and so far all I've had is a bit of nausea and tiredness. I'm not even going to count the sudden attack of the shits I went through yesterday, becuase that was my own stupid fault. so it doesn't mean that I will experience it everytime I have the chemo. It's still early days and only time will tell how this chemo will effect me, but so far so good, I can tolerate how I am feeling right now, even long term, even if I need a little help of sicky pills, I look at it as a huge step forward from the last chemo tablet.

Vinorelbine Cycle 1

First day of Vinorelbine/Navelbine chemo which I took at half past ten.

Strange little things they are, you can't get into them without cutting the strip with a pair of scissors, then you have to peel off the film to reveal the tiny capsule of chemo inside. This has to be done for each one. I have 5 tiny designer boxes, each with their fancy logo name and description of the strength and each containing 1 tablet. One small tablet in each box, you think I'm joking but I'm being serious here. What a waste of paper, ink and expense. How many cancer patients actually have one tablet. Especially as the information leaflet that has been carefully folded and placed neatly into each box explains that the mg is worked out by the body volume.

Half an hour later and I started to feel a weird queazyness come over me, which was followed immediately by the growl of my stomach. Spending the morning sat on the toilet with my head stuck over the sink isnt my idea of a good start to the new year or to my new chemo treatment. If I thought the diahrea was bad from the lapatinib and capecitabine well it was nothing compared to this. I know talking about diahrea isn't a nice thing to talk about and I thought with the amounts of talking and doing of it last year, it would be anough to last me a life time. What I couldn't believe is the quickness that it came on, even Lee said there was surely no way the chemo could work through my system so quickly. But the matter of factness about it is that it had. It had me runnin to the toilet and ready to puke just half an hour after the last tablet was swallowed. Now for those of you who already know me, sickness is something that I do not tolerate, it's at these rare occasions that the self pitying, feeling sorry for myself person comes to light. And so sitting on the Loo with with head over the sink I started to dwell on what my future held for me. Another shitty year (excuse the pun) just like I'd had with the capecitabine, then suddenly it dawned on me. 'oh crap' (ha ha excuse the pun again) I was supposed to take something before the chemo tablets. I was supposed to take a pre med of anti sickness half an hour before taking my bloody chemo. What a stupid dip shit. What a stupid friggin dip shit. Forgetting to pick up my house keys before leaving the house is dumb, losing my purse cos i'd put it in the fridge is even dumber, but to forget something as important as taking pre meds for chemo is the dumbest and stupidest thing ever .

Strange; but realising my idioticness, it has made me feel better about things. This chemo and this year is not going to be a repeat of last year. This sickiness and diahreah is not down to the treatment, it's down to me being stupid and lax again. (Haa pun again) My positiveness has come back and I'm prepared to bet that there is a good 99% possibility that everything is going to be hunky dory.

After taking some anti- nausea meds my stomach started to settle down. My wonderful husband, my sole mate, set about cleaning the house, he cleaned all the upstairs, all the way downstairs and then brought boxes into the living room and started to dismantle my Xmas Tree bit by bit, while I dictated which box each bauble or decoration went into.

With the Tree and Christmas decorations down and my house almost back to normal (boxes of decorations are still piled up at the bottom of the stairs) I fell asleep on the sofa only to wake up again when it was actually time to go to bed. Early night to bed at just 9pm and with a little help of a sleeping tablet I will be buzzing and full of life, ready for what ever tomorrow brings ...

2012 Bring it on !

With the New Year celebrations out of the way, my main thoughts are now to get started with my new chemo that has been winking at me from the fridge door for over a week .

This chemo should have started before Xmas, after my latest CT Scan had shown further progression in my liver. I was feeling pretty down, totally fed up of 2011 and all the crap side effects that the Capectabine chemo had given me, and I just wanted a rest from it all. 

I was admitted into Hospital with chest pains on my left side (the 2^nd time in 2 months) the week before Christmas and was being monitored and checked for blood clots in my lung. While sat bored in the hospital bed and arguing with the nurses that for me having a low blood pressure reading was normal, and that I was fine and just need needed to get the hell out of there, my oncologist turned up with my latest CT scan results. Hey Ho, there is no clot or cancer showing in my lung, but as a safety measure I have to inject myself with a blood thinner every day, stab myself in the spare tyre of my stomach with a super sharp needle.  The nurse's had been stabbing me for the duration of my stay, but it was now time for me to learn to do it myself.   Cripes!! I used to pass out with the sight of a needle so a big pat on the back is required here for coming such a long way in the needle phobia department.  Plus with the added bonus of me knowing that these injections actually burned like frickin hell and so far had numerous bruises to show for it.

My oncologist explained to me about the new chemotherapy that I would be having, he said that I would take it home and agreed that I could start after the new year, now these plans were smashed to smithereens when other Mr Oncologist turned up and told me that he didn’t want me to go home until AFTER I’d had the chemo along-side the drug Herceptin, and of course hospital pharmacy’s being hospital pharmacy’s the waiting time rolled into bloody hours rather minutes of me running out of them big double doors.

After a crying tantrum of panicking that I was going to be sick to my stomach over the Christmas and New Year party celebrations, arguing with them that a week surely wouldn’t make that much difference, especially when the stupid cowing ‘Dr X’ had labelled me as being paranoid a whole year before I was diagnosed, and then being told that there seemed to be a problem of getting the Herceptin signed off by the FDA, I got my own way, and was given 4 boxes of bloody thinner injections, a sharps box for all the needles to go in and a nice plastic bag with my chemo inside that had a big sign on the side saying ‘Refrigerate’ and to commence on the 2^nd January.  I was relieved.  Relieved was an understatement, I was bloody ecstatic.

Christmas was fantastic, and totally different to what Lee and I normally do.  Master Luke had decided that he wanted to stay with us Christmas Eve and so the evening was spent watching lots of Christmas Films, with ‘Polar Express’ being my favourite and all 3 of us having a glass of bailey’s while eating all sorts of naughtiness.  Our Christmas day, after a very hectic morning of unwrapping presents... oohhh goodies, camera and tripod to mention just a few, which made me feel that I had been such a good girl this year as they were right up there at the top of my Santa list.   This hectic morning suddenly turned into a quite relaxed day.  Luke went back to his mums at half past 12 at which point Lee and I had already got the dinner going and just flopped onto the sofa.  Normally, we don’t seem to get a minute to catch our breath due to going round all the family visiting, but this year we had planned it different, we had planned to stay put and not take a foot out of the front door.  Later in the afternoon, I did feel as though I had missed out, but that was probably due to the fact that I was thinking that everyone else in the family were partying, boozing and just plain old being utter lunatics, Which I have to add is what I am usually like.  Give me a glass, and I’ll pour wine in it, give me a dance floor and I’ll do the Can Can off the table.  But the main issue here is that we wanted a quiet Christmas, nothing to hectic, to make sure I didn’t have a relapse and finish off back in a hospital bed.

The rest of the week, in between Lee and I taking the dogs out and me taking endless amounts of pictures on my new camera, took our time visiting round Lee’s family.  And then before we knew it, New Years Eve was upon us.

New Years Eve is my night, always has been since finding out that Santa didn’t exist.. Whoops sorry for all you believers ha ha.  Anyway, even though we had planned a quiet Christmas, New Year we planned to bring in with a bang.  We loaded the car up, clothes, dog beds, dog food, and dishes, got the over excited dogs in the car and then drove up to Donny.   We arrived at my mums, and had just enough time to empty the car, get the dogs settled and a have a quick drink before we headed off round to my brothers.  Boy oh Boy, he’d really pulled all the stops out this year.  Massive buffet, (well done Kerry), huge pan of chicken curry (well done little brother) and the best Kareoke ever, all complete with flashy disco lights.  I am the worst person on a Kareoke, talk about breaking glass, you have to lock all your glasses away when I get going and make sure there wrapped in cotton wool too.  We had Neil and Jay (Kerry’s sister) singing Meat loaf ‘Will you love me forever’ or should I say shouting, which had us in fits of laughter as at one point neither of them were singing and then all you heard at the top of Jay’s voice was ‘It’s your turn you twat’.   This was followed by a bit of Roy Orbison’s Pretty Woman and not to forget my grand finale of YMCA with Joe my little adorable 8yr old nephew. The night was ace, well until it got close to midnight when our Kez handed out cheap pink champagne to drink the New Year in, it tasted like she’d took it out of the bog, and can’t imagine how gross it would have been if I hadn’t already been intoxicated by the endless amounts of vodka and wine that I had already consumed.  It had gone 2.30 and I was flagging, sitting quietly on the chair in the corner while laughing at everyone else making complete fools of themselves.  (Mmmm I wonder if they remembered that I set the camcorder going for the night, Definitely have dome blackmail material on there ha ha)  My mum had already gone home a little earlier and so Lee and I made the journey, on foot to her house.

New Years Day and New Thick Head to go with it, Lee drove us back home, with me immediately plopping on the sofa for the rest of the day and evening as soon as we walked through the door.

So now with all the Christmas and New Year celebrations out of the way, and a good one at that, I can now put all my energy and focus on killing these bloody cancer squatters.  I have it in my mind that this one will not be a bugger like the last one and am very hopefully that it will work for me to the point that maybe one day, I will prove the doctors wrong of them saying, my cancer is incurable.  I have no regrets of delaying my chemo until after the Christmas holidays; I just didn't want to take the chance of this chemo really messing up my festive spirit. I know a lot of people will think I am crazy and should put my life first rather than a week of booze and celebrating, but after having such a crap time with the Capectinabine chemo last year, I wanted a bit of a break and let my hair down for once.  Plus the way I see it, and I think the crap capcitabine taught me this, is that quality of life really is a big factor in the secondary cancer malarkey.  What is the point of living for 10, 20 or even 30 yrs if you spend all that time throwing up and feeling so bloody bad that you spend 17 days out of every 21 in bed, comatose’d with the drugs that your are taking.  I don’t know about you, but personally I would much prefer to live a fuller life for a shorter period.  My thoughts on this may change in the future, ‘IF’ my cancer progresses more, I don’t know, I may go into a panic status of guilt and cry constantly ‘I should have, I should have I should have’ but then on the other hand i may just smile knowing that I made the right choices in life and actually got to live my life.