February 26, 2008 at 10:44 pm (Explanations, Treatment, Venting)
my pet scan came back positive – i still have cancer – just a little bit but its being a stubborn little shit.
so i have to have another round of hi-dice – so everything gets pushed back 3 weeks.
i start tomorrow.
Im very very very disapointed…
this is all fucked.
I will explain the heart scan later – very painless and easy…. but for now i need to go to bed and get some sleep, and hug my husband.
February 23, 2008 at 8:16 pm (Explanations, Treatment, Venting, recovery)
*huff*
Ive had so much to think about and do this week, its been nuts.
Firstly, Im sure Ive mentioned that the nuclear medicine department of my hospital where Im being treated managed to lose my PET scan request sheet – or it got lost in transit (Im not even contemplating that the hematology center lost it since they are sooo organised in there)… and Ive been waiting for weeks to find out my PET scan time – Ive had the receptionists and the head nurse ringing them to get me a definite date. Without a PET scan we cant know if the cancer is gone or not, and that defines my next treatment.
So – Monday, blood test (normal) still nothing from PET service. Tuesday, nothing. Wednesday I had a heart function test, which basically consisted on breathing in different fashions into a big machine which measures your intake and output of air… I was below normal until they gave me 4 puffs of ventolin (which gave me the shakes), but it pushed me into the ‘normal’ range. So my lung function sucks right now, but Im sure it could be worse. We went downstairs to get more blood taken to test (in case youre wondering, its so they can keep track of my levels in case I need another blood transfusion – saves me getting even sicker), and there was still no sign of PET scan.
The head nurse told us to go get a drink or something, come back to get my dressing done and she should have a response by then. So we came back, and sure enough, she had managed to secure me a date for next Monday (2 days) at 8.55am – horrible time of the morning really, especially having to drive in peak hour down the freeway BUT its good because I wont be awake and starving too long, because I have to fast from midnight.
Oh and also, I should mention, in case youre worried about me being a pin cushion with all the blood Ive had taken, and things pumped in, the port Ive got allows them to take blood from it as well as administer drugs. Its cool that way.
So, Ive got my PET scan booked, so please assume pretzelling position!!! We want it to come back CLEAR (and my heart function test on Tuesday to come back ok as well), so that I can start the BEAM (yucky disgusting chemo) on Thursday…
Yes, I never thought Id say it, but I WANT to start this chemo – if only because it means that in a week after I start it should mean no more drugs, and then in a month I should be getting better – I mean, if I feel like I do right now, in 4 weeks, I think I will be good.
AND I will be able to go swimming in our fabulous pool that has been looking so tempting these past few days – but bets that it gets really cold and unswimmable weather once I get my port out?
Ive not been posting much simply because I feel good – I dont DO much during the days that Im not in hospital, but Im just chilling and doing what I want to, aside from going out, because I know that when I feel like crap I wont feel like doing anything much.
Oh and thats the other thing. Ive not been going out, even though my bloods, white cell count etc, are good, because I dont want to risk being near infectious people that will make me sick and delay the start of this treatment – I want this over and done with as soon as possible!
So, I shall keep you updated on the results… of course, if the PET scan comes back positive for cancer (ie, its not all gone), then I will start the next round of HiDice chemo on Wednesday probably…. but I hope not.
ciao!
January 15, 2008 at 8:59 pm (Doctors, Explanations, Treatment, Venting)
well – I think I have found a rival for the pain felt by the bone marrow test… the insertion of the port in my chest… again, the sedative didnt work, and the local anesthetic wasnt working as deeply as they hoped obviously. but i get ahead of myself
I still cant remember exactly what the port is called – a double something or other (arterial venous something)- i will promise to note it down tomorrow – ahh tomorrow, my first day of chemo – again… hmmm
Ok – the port. I was due at the hospital at 11am, and on the way I admitted I was nervous, there was no point pretending that I wasnt. As soon as I got the the short stay unit, I was informed that they wanted me in there as quickly as possible – I think I was fast-tracked.
So I signed my admission forms, got dressed into the funky robes that tie at the back and have your butt hanging out (note: wear black underwear on all trips to the hospital not bright blue!) and was wheeled out towards the surgery room by about 11.30 or so.
We waited around (the nurses and I) in the surgery room for the doctor and Im pretty sure it all started at about 12.15… the nurses were nice and I tried to make small chat, but I was nervous. My PICC line going into my arm last time was not pleasant, but it was almost bearable because the pain was in my arm – this was going to be in my chest and whilst I hoped it wouldnt be too bad since my chest was still partly numb, I knew it was only superficially so and wouldnt make much of a difference in this case.
Since they needed to be sure that the catheter was going into the correct place, I was under a big xray machine and everyone was wearing those protective vests. There were 4 big screens/monitors that showed my blood pressure which was to be taken automatically every 15mins, and my heart rate was being constantly monitored by the little thing they stick on the end of your finger – that stayed regularly at about 96 before it all started. I met the doctor, who the entire time called me the wrong name, signed the consent form and then they started.
The gown was pulled down (no point in being modest about my breast hanging out now – but OH it was FREEZING!), and the nurse/assistant had a student with them who was to do the cleaning of the area… they firstly had to take the dressing off my newly clean and healing scar from my surgery – apparently they needed to find the vein in that area… they used alcoholic swabs obviously to sterilize the area, and FUCK! did that hurt!!!!! Yes, the pain started early, but I could handle the stinging.
Next I had to lie with my head towards the left, and they placed a blue sterile sheet over my face and chest, with a sticky, presumably clear, panel over the area they were working on. I had a small, maybe A4 size, hole created for me to look out of (and so they could look in on me) towards the left and that was it – luckily for them, I was not claustrophobic.
Now – they apparently gave me local anesthetic, and I dont know whether that was what hurt so much, or whether it was what they did soon afterwards, but it literally felt like someone was shoving a needle straight down into my nerve along my collarbone. The doctor was calmly apologizing and telling me it was going to be ok, but either they didnt wait for it to start working properly, or they didnt use enough, or my body is just stubborn, because alot of what followed hurt.
I know he kept asking for more local anesthetic, especially when they went along the collarbone area. Im not exactly sure what the process was, but I know they made an incision up the top, about 2inches out from my center and about 1inch below my collarbone, and THAT was what hurt the most. I felt the tugging and the pushing, and I know the doctor gave me some sedative, because I started to feel more relaxed and I really wish it had worked better because I honestly would have prefered to just be knocked out for this. I do remember crying, sobbing and the nurses peering in on me looking very worried, telling me it wouldnt be much longer, and at one point the tugging was so hard and it hurt and the doctor kept asking for a bigger line – obviously the gentler versions were not getting through, or threading through the vein well enough.
I cried out in my mind at one point – I just couldnt handle it. It was so painful, and so heart hurting – I was stressed, sore, now in more pain, and I was all alone, and it just didnt feel like it was going to stop. I desperately wanted one of the nurses to hold my hand, and it is almost impossible to practice deep breathing and calming techniques when your physical body is in so much pain – constant dull ache I can handle, but not sharp unexpected searing pain.
And the worst thing about this all was that I could feel the line going into the cavity in the center of my chest, and I could feel it – it was something I had last time, because pretty much thats what happens – a line gets inserted into just above your heart, to ensure the drugs are dispersed quicker. But I could feel it there, and my body didnt like it and I tried to tell the doctor that I could feel it IN my chest, but he thought I meant there wasnt enough local… no UNDER my sternum! I think I need to learn my anatomy better so I can inform the doctors better.
Anyway, FINALLY it was over, just a few more stitches, which the student did I guess since the doctor was instructing – unfortunately for the poor student, I felt the third one on my breast. I think I dumbfounded the doctor because I was so sensitive to it all.
I was slid back onto the trolley bed to be taken back to recover and as I was wheeled out one of the nurses commented on my red splotchy face and asked if it was a reaction to the drugs, or whether it was my natural reaction to crying – I hate my red splotchy face after crying so it was the last thing I wanted to hear!
I was taken back to the recovery section of the short stay center, and was given lunch and some pain killers – when asked what i wanted for lunch my response was “Panadol! and maybe a hot milo”
I asked for Nic to come in at a bit later, and mum came in as well – I was very very sore, and not liking it much at all. It was all fucked up.
I managed to get a little bit of sleep, and eventually felt up to going home.
And here I am.
Basically the port enters at about 1inch above my right nipple, and inside the vein/under the skin, curves up and then down towards my heart/center. On the outside, there is about 3inches of exposed tube, 2 lines, with what Im assuming are clamps near the anchor which is stitched onto my skin, and at the end of the lines are plugs – this is where they plug me into the drips – and where they take blood from – one is red and one is blue – obviously one is for putting things in and one is for taking things out – not sure which is which yet. And its all covered by a clear waterproof dressing – which unfortunately also covers my nipple… why is this unfortunate? Well, the dressing needs to be changed each week, and getting an arm wax each week was bad enough for my PICC line – but a breast wax? OUCH!!!
The two lines curl up under my arm – which poses the question – who the HELL decided on the location!? I cant very comfortably wear a bra now, and whilst it may be discrete and not very noticeable under clothes, once I lose my hair, its going to be slightly obvious that Im going through chemo, so I really would not have minded the plugs coming out near my neck… this way Ive got the discomfort of trying to put clothes on over the top, and also having to wear a top that has some sort of opening near my armpit on treatment days so its easier to access the ports! A man must have designed this!!!!
In addition, because I cant get it wet, showers are made more difficult, and I can only sit in a bath that comes up to my waist because I dont want to get the plugs wet by sitting in water of any higher level….
grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
this is fucked.
~~~~
So today Im sore, but not as bad as expected – most of which is thanks to all the healing vibes and love Ive been sent by all my friends and family.
And tomorrow I have my first chemo session… 9am… not even a reasonable hour! I must admit, I usually sleep in until about then – especially after chemo, so I dont know how Im going to make it to chemo on Thurs and Fri – with lots of anti-nausea and sick bags Im sure.
Im going to sign off now, since my right arm is quite sore and typing at the computer is making it ache more.
January 8, 2008 at 11:21 pm (Explanations, Venting)
I should be more honest with you guys.
I take all my analytical data, write it up and Im sure I seem sort of ok.
Im lying – well not lying because I will break down later about all of this – probably in Nic’s arms.
How am I dealing with this?
Let me start with saying that its pretty fucking shitty – no its completely and utterly fucked up.
And what scares me the most at this time? The bone marrow test! The most painful thing I have ever had to go through – and I never want to ever again – but of course thats not going to happen now
And then theres the chemo – the feeling crap, shithouse, ALL the time. And the other worse thing about chemo? Because the drugs low your immune system, you are open to all types of infections… So basically, if you catch a cold, it could kill you. THAT is what is so fucked up about chemotherapy – yes the drugs are shit, the nausea is fucked, and so is the vomiting, losing hair and taste-buds and all saliva and bodily fluids… the fact that if all that doesn’t kill you, the infection caused by you or your husband or child or family member coughing anywhere near your direction.
THAT is why cancer patients dont go out much – they may really really want company, but a trip to the shopping center might end up as a trip to the emergency department! And as much as they love you and your curry nights, apart from the fact that they probably cant taste a thing, its all about self-preservation and staying away from running noses/eyes and sweaty beings.
So yes, whilst I may seem fine right now – and partly I am – Im positive I will come out of this ok, and I have hopes that my good fortune of fairly easy treatment will carry onto this treatment… Deep down, the reality of going back to that stage of being the lowest youve ever been – of seriously just wanting to stop it all – of having to count up before you can count down the number of treatments, of having no friends, no contact, of feeling unloved and ugly and sick and disgusting ALL THE TIME – of not being able to even have a decent shower because I cant get the port/line wet, of having to ask for help shaving my own legs (and thats when I feel up to it), and feeling like there is no sunshine on the horizon….
THAT is what I’m not looking forward to – because whilst I know last time was good compared to some journeys – if that was good, and this is going to be worse, Im frightened.
January 5, 2008 at 7:28 pm (Family, Spirituality, Treatment, Venting, recovery)
Tags: hallucinations, hospital, nurses, surgery, vent
the one thing that i remember most from this surgery as opposed to my last one, is that just the standard of care seems so much better… i dont know if thats just cos i was so much more stressed and sick last time, or out of it most of the time anyway that i didnt notice the nurses – but here the care just seems better – its nice to feel looked after, especially by people youve never met before.
I went to visit my cousin in hospital a few weeks ago when we were in the area, and the hospital there was horrific!! We were there for 20mins, and the phone rang off hte hook, there were patients buzzing, and there were NO staff – NO nurses, no reception, no doctors that i could see – we walked in and out 4 times and i did not see ONE staff member belonging to that oncology ward. My previous surgery was not like that, and this certainly wasnt either, because I was completely horrified at that scene.
Its amazing how good food tastes, even hospital food, including the vegetables a’la cooked-so-much-they-have-no-nutrients, when youve not eaten for over 12hours, forced. You of course know that its the very reason that youve been TOLD not to eat that makes you so aware of your hunger – but thats of little consolation when youre starving.
So I got to eat.. and it was good.
The rest of the day was spent resting, no tv cos i couldnt be bothered turning it on, and I think i instinctively knew it would keep me awake and distracted from healing sleep. Dad came back to say hi, and then when he went out to chat to mum and I awoke just as he leant over to kiss me goodbye… I woke occasionally as the nurses came to check my blood pressure and stats… I did not need nausea medication, but hte new staff nurse left the canular in just in case because in her words “knowing my luck i will take it out and you will vomit everywhere”…
They kept asking me if I was experiencing pain and on a scale of 1-10, what it was.. they never once asked what my reference for a 10 was, so I made sure I told them – “compared to a bone marrow test, with no sedative, this is about 3!” I have a high tolerance for pain – or maybe that should read that I have a high experience of pain… and whilst I understand this is there way of trying to test a patients comfort level, and a level 8 for anyone is bad whether that be compared to a bee sting or giving birth as someone’s high level of experienced pain, its still a practise that needs some further definition.
I slept, visualising all the healing energies from friends and loved ones around me, and it truly helped – even if I was hallucinating or imagining it, I personally see nothing wrong with knowing and feeling that you are loved.
Because it was the Christmas period, there were people in that ward, who normally would not be sent to that ward – so there were some interesting exchanges we heard from my room – I wont go into them, but two of hte funniest were listening to the dude next door arguing that he wanted to go home and when the nurses refused, he only wanted to go outside – and that was fine with the nurses so long as he was back by 8.30pm otherwise they would call security to go find him – there went HIS idea of sneaking off home!!
The other one I only heard, but apparently it was accompanied by a bare black bottom flashing across the shared room across the hall – a lady calling out “jack”? But it sounds fairly like “fuuuuck”? A bit sad I know, but in my muddled brain it was hilarious!
By about 4.30/5pm we decided to let me have dinner in hospital and then we would go home… dinner came and went, and the resident doctor was called to come and check me and give me some meds to take home just in case… I think around this time my blood pressure, which is normally quite low dropped to something like 85/90? or something? I will ask Nic, cos Im sure he would remember – the nurse was NOT a happy camper about that and my prospects about going home.. but I drank more, assured her it was ok and by about 8pm the resident finally rocked up and I was given a script for anti-nausea pills (same as my break through tablets last chemo round) – and the canula was taken out and I was finally allowed home at about 9pm, or 10pm?… yay!!!
Made it downstairs, and to the car, despite my mothers attempts to make me sit down and wait for my husband to get the car and to pick me up (not even 500m away)… Its all about being able to do stuff for myself whilst I feel up to it
One thing Ive learnt, and I have to keep reminding myself, is that its ok to ask for help – I get that, I really do (family, stop rolling your disbelieving eyes right now!)… BUT I know when to ask for help. I know when I need it and I know that for my own sanity, I NEED to be able to do things for myself – even if that is walking down those steps, or picking up that box, whilst I feel able. Because I was raised to be self-sufficient and able to do things for myself, and Im proud of that. I am not about to sit about and expect others to do everything for me because thats not who I am.
Yes I am proud and stubborn and pig headed sometimes – but I am determined to get through this with as much self-dignity as possible, so please just make it a bit easier for me by understanding why I get frustrated when you insist on helping. I appreciate help, I just dont appreciate being treated like I am incapable of conscious and reasonable thoughts and decisions and actions.
This is still my life, and this is how I choose to live it.
January 4, 2008 at 4:24 pm (Venting, recovery)
Tags: cancer, emotions, relapse, remission, Treatment
i should make myself a deal
no posting whilst i feel crap
but im sore, tired, emotional and i just watched Delta Goodrems latest song on Foxtel and I burst into tears thinking how much i really dont like her cos she only had to go through this once.
retrospectively i know its going to sounds stupid and selfish and mean and bitchy – but really, when youre feeling like shit and having to face going through a worse journey than last time, and last tiem was pretty bloody shitty, and you see someone who seemingly has it all and is getting on with theirlife it makes you feel worse.
i know its stupid – i would never want someone to go through this -honestly – as much as I dont like you, i would never wish this on anyone – ANYONE!! and its very good when people pull through and finish their treatment struggle… but the fear of remission never goes away, you can only keep hoping and being positive that it wont return..
so im not hte most popular person when it comes to other cancer remission patients im sure – im the embodiment of all their fears… and it feels like shit – its very very very easy to slip back into feeling hard done by, when i know at least ive got a cureable type of cancer- of course, if its cureable, how come I wasnt fully cured last time? grrr
ok stop it.. im going to go now before i scare you all off.
