The Beginning of the End

March 17, 2008 at 5:42 pm (Explanations, Treatment, recovery)

On Thursday I start the final round of chemo – 6 consecutive days, with days 1-5 being just 1hr infusions at the hospital and also take home drugs.. yay! (can you feel the sarcasm?)

The 6th day is the really crap chemo drugs – you suck ice before, during and after to help protect your mouth against ulcers. Ive been told that unfortunately there isnt much they can do for my throat or gut… great! If you can get ulcers that quickly from the one drug cocktail, just imagine what its doing to the rest of my body! The aim is of course to kill off everything that could potentially be cancer – so all multiplying cells, which is your saliva, mucus, hair etc etc.

On the 7th day, I will receive my stem cells back. And you get side effects from these as well, including weird feeling at back of throat and stomach etc… as if you werent feeling crap already!  It takes the stem cells 7-10days to integrate back into your bone marrow, during which time you will feel like crap, and any harmless bacteria in your body will suddenly have free reign, so I have to go into hospital everyday for checkups, fluids etc (since it will be hard to swallow), checking temperature, bloods etc, and at the first sign of infection or the chance youre not doing so well, you get admitted, and they dont let you go home until your bloods come back up (potential for 2 weeks).

Now, on one hand I dont mind going into hospital since then if I get sick, I dont have to travel anywhere. BUT on the other hand, I cant eat what I want, when I want; if I get upset stomach, and have a shared room, then I will be very self conscious and feeling like crap; bored bored bored; and just general feeling of crappiness.

So I understand the benefits of being in hospital – and is there a chance I may not have to be admitted? Well, yes, but my doctor tells me that out of 250 stem cell transplants theyve done like this, only 5 have not had to be admitted – so its highly unlikely that I will be able to stay home.

And to top it all off,  once the stem cells reintegrate, youve got a good 6-8 week period until you’re feeling well again…. GREAT!  (again, note the sarcasm)

I have a job starting exactly 6 weeks post treatment….  theyve been holding the position for me since DECEMBER, and I would hate to lose it. But apparently exercise helps, so once I get home I will be doing laps of my house/yard, and once I get my hickman line out, I will be swimming (with supervision just to make sure I dont drown on my first lap)… and eventually I will get back to indoor rockclimbing.

So anyway – Im feeling pretty crappy about it all. There isnt much I can do other than just live through it, even though I wish there was another way and I didnt have to do it. At least I know it will be the last lot (of course the thoughts of, “what if the cancer comes back again” creep into my head, but I try to ignore those), and I can look forward to feeling better.

BAH!

*sigh*

Since my last chemo Ive actually been feeling pretty good. Ive been told by various people that Im looking really good and healthy which is a good sign. I did have to go in for a blood transfusion, but that wasnt so bad – the resident doctor in the clinic prescribed me a chocolate as part of my treatment – it was written up in my file and everything!  :)   He gave me another one during the transfusion and then the next time I visited for blood tests, there was one waiting for me with my name on it :)

I was bored again during the transfusion so the admin staff got me doing jobs again, which was fine, since I had nothing else to do. I like to feel useful and productive, rather than just lying there – hence why I probably wouldnt like being in hospital – is it possible to sleep for a full two weeks?

I shall try to post during the chemo – tell you all about the chemo pump I shall have attached to me – but if I dont post much or for a while, you know why.

Leave a Comment

End of hiDice

March 1, 2008 at 11:19 am (Doctors, Explanations, Treatment, recovery)

Ok – so ive had my 3 days of hi dice and im feeling pretty crap. Its today that my taste buds go haywire usually, and whilst food still tastes ok, its between eating that i have the weird feeling in my mouth… So I tend to eat and drink alot – and ice cream helps as well.

but im feeling lethargic and out of it, but just checking in…

my doctor came to see me yesterday and said that his colleagues agreed with his actions of putting me on another hi-dice cycle before beam, but there is only a small amount of cancer left in my chest area, and i wont need another pet scan since they want to reduce my exposure to the xrays etc (since Ive had 5 in total now as well).

Ive had a few thoughts on this whole cancer thing which i shall check back in later and tell you all about.

Leave a Comment

Drama drama drama

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!

Leave a Comment

day 2 & 3 of chemo, and following days of recovery

January 21, 2008 at 3:29 pm (Family, Treatment, recovery)

well, im still alive.

the first thing is that after the 2nd day, i felt so FULL – like i was so full of fluid and drugs it literally felt like i was drowning in it. i was ok by about 4am on friday.

day 3 – the saline solution affects me.. which is odd cos it should be nuetral – the steroids are the same tho – and anti-nausea- makes me sick.. might be the speed they give it…

i still have my hair

sunday – first injection – 8am – so that when i start my 9am blood appointments this week it will be done before we go…i passed out – Nic was terrified i think

i take my lazaropam now which calms me down – the nurses reckon it was a stress/anxiety reaction

2nd injection was better  -sobbed quietly before submitting to the lazaropam, felt better afterwards

from now on – injections are to be given in bed – twice daily to stimulate bone marrow

my legs are so sore

and i have no stamina – even sentences and paragraphs are beyond me

i cant walk from one end of my house to another with a pause less i lose momentum and collapse…  my leg muscles hurt like ive been rock climbing – my chest hurts with heart palpatations – or not, just that im more aware of it, but i feel tight

the port is getting better – not so sore

ok – going now – tired – have a lil bit of work to do before i finish… may take a few attempts.

x

Leave a Comment

chemo day 1

January 16, 2008 at 9:28 pm (Doctors, Explanations, Family, Treatment, recovery)

fuddled and chemo brain – slight nausea is threatening at the moment so apologies for apost that will be written with my eyes mostly closed.

went in – meant to start straight away, but mum wanted to see doctor first – i wasnt fussed – i think that made everythning run late, but oh well. he came, talked about fertility preservation more and said that generally he has a 2-3 week wait that he is happy with from date of diagnosis, so the IVF egg collection was out of the picture now. I did remind him that its been over 6weeks since the scan.

There is still chance for drug that restricts ovary functions – cant remember name – that is an injection once every 3 months…. still experimental…. Dr Bowtie gives me a 50/50 chance anyway, which is pretty good, and since im young it should be ok.

i had the option of waiting chemo one more week and seeing fertility specialist, but i decided to just go ahead with it – id psyched myself up for  it, so it should happen now

had lots of fluid, then the steroid and the anti nausea – geez that was not nice – tasted terrible

so the nurse got me a special tablet – basically a relaxant so i went drowsy and relaxed.. i could deal with that… im getting it each time now im told.

i was there was 9am until about 3pm

got home

slept

ate

hopped on computer

my brain is fried, and the more i try to work it, pay attention to things that are moving and require my attention, such as my fingers, people etc, I feel more nauseous.

Im on a BIG bag of drugs, and that doesnt include my injections yet!  just lots of drugs to ensure the chemo doesnt irritate my bladder, and my gut, and anti fungals and antibacterials etc etc etc  lots and lots of drugs

i need some sleep

yes

this is the brain working of a chemo patient.

Leave a Comment

ouch ouch ouchy ouch ouch

January 7, 2008 at 10:30 pm (Doctors, Treatment, recovery)
Tags: , , , , , ,

I have no idea where I was last at, but my stitches/neck are starting to really really hurt.

It might be cos I missed my last set of drugs (basic pain relief), or if its starting to fuse and heal and with my frustration at not being able to move around properly, cos its hindering my movement…

but it HURTS. Imagine this:

Youve got a phone permantly wedged between your ear and your shoulder to hold it in place – after about a week, you move it away, and then try and straighten up…

OR

youve been cut and stitched back together, with your ear permantly attached to your shoulder – no being able to stretch your neck, or turn your head properly.

THATS what it feels like, but with the added advantage of when you do move inappropriately, you are in severe headache, feeling-as-if-the-stitches-are-about-to-rip-out pain, and you have to go back to the position of head to shoulder, keeping the phone in place.. and Ive tried using that to my advantage when Im on the phone, but it doesnt work – it still hurts!

~~~~

Ive got my appointment with my doctor tomorrow. Well actually not my Doctor Bowtie – his associate who is looking after his patients whilst he is on holidays. My initial reaction was that I wanted to wait until my doctor returned. I dont want anyone else deciding my treatment. Even though Ive had a few moments of doubt, where I wonder “why wasnt this cured last time?”, “why didnt he check my results earlier?”, Ive still got a lot of respect and love for him, and I trust him implicitly. My thoughts of doubt were more directed at universal questioning, as to why I have to go through this again, because I know he was just as shocked as I was when the results came back positive.

He is a fantastic man, and I really dont want to see anyone else.

[And as a side note, Im sure he has had more profanities and doubts directed at him in his career than what I have just stated]

BUT – I spoke to my mum today, and she mentioned she had called the head nurse at my treatment centre to ask about the procedure of diagnosis, treatment plans etc whilst my doctor is away. She was reassured/informed that before he left, there was a group meeting of every patient on the books, treatment plans, possible variants on that, and in my case, a plan for every possible diagnosis outcome – so that everyone is aware what may happen. And whatever he tells me, will be exactly what my Doctor would say to me anyway.

There is always something about a persons persona and aura of course, that gives you faith in them or not… so it wont be exactly the same, and Im starting to realise I sound as if Im setting this other doctor up to fail, by judging him before I even meet him. So I will stop now, and check back in tomorrow with the report on how it all went, what the treatment is, etc.

~~~

It has come to my attention that a few people may be uncomfortable reading this and leaving comments for the world to view, or asking questions, so let me say this:

I appreciate your coming here to read this blog. I believe it is important to read and get even a small educating on what its like to go through this, even from an outsiders perspective. And I hope that you will come to be similar to my closest friends or extended family – that you will understand it from even their perspective – I want this to be not only my story and journey, but yours as well, just as it is part of my family’s.

I was going to write so that if this ever happens to you or to yours, but thats silly. Reading this will indeed give you some heads up on what may happen if a loved one, or even yourself, gets diagnosed with cancer, but I believe you dont need that to happen to get benefit from reading this, from interacting. There are so many taboo subjects in this world, and unfortunately cancer is one of them. However, the most compassionate and loving people I have ever met are those who simply try – try to understand, or just try to be there for those who need it. Those who are willing to listen, listen to all the shit bits, the inspiring bits, the tear jerking and down right frustrating bits – and at the end of the day be willing to admit that they dont understand what its like, but they are willing to be there, just to listen, to be, and to be witness.

So THAT is my hope.

And in facilitation of that hope, Ive set up an email address, keeping in mind my pseudonym, so that you may email me and ask whatever you like, tell me whatever you like – and please know, that I welcome all comments, and questions, and I dont mind in the slightest if you forward this blog to others, because maybe then there will be more understanding in this world of ours.

1 Comment

Surgery – take 2

January 5, 2008 at 7:28 pm (Family, Spirituality, Treatment, Venting, recovery)
Tags: , , , ,

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.

Leave a Comment

brain disfunction

January 4, 2008 at 8:05 pm (Friends, recovery)

this should be interesting.

i just had a conversation with one of my best friends Mary – and i cant remember much of it- mostly what i said

its good to know that whilst the physical side effects of the anesthetic are different to last time, the mental ones arent…  cos i cant remember much of what isaid

so it wil be interesting to read this back tomorrow or the next day

hmmm  i really shouldnt blog when im feeling like this

Leave a Comment

emotions

January 4, 2008 at 4:24 pm (Venting, recovery)
Tags: , , , ,

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.

Leave a Comment

2 days post surgery (2 days? 1 day? Im losing track)

January 4, 2008 at 2:25 pm (Family, Treatment, recovery)
Tags: , , , , ,

I know i havent finished the post from yesterday yet.

BUt today Im feeling sore – the local anesthetic they used to numb the entire area around my neck is wearing off, and my neck is getting very very sore.  the bones ache and i cant be touched.

Im also puffy… great! One more thing to make me look and feel awful

Greasy hair, puffy face, pain around my neck and Ive still got some betadine colouring over my body where I havent been able to wash properly because I cant get my dressing wet.

 I had to tell my nephew I was sick again last night. I sat him down, as he was going to bed, and just explained that I know Nana told him I was sick again, and that Ive got to  go through the same stuff as last time. At least this time if I lose all of my hair, I will get to see if I look good with a bald head, and he can help polish it if he wants :)   He giggled at that. I also made sure Itold him that Im a bit sore and tired, and not feeling very well, so that if I get grumpy that its not at him and Istill lovehim.   I had to make sure he knew that, and I left it just by telling him not to worry too much cos Im not about to go anywhere.    Ive always talked to my nephew like he is an adult, knowing he would understand and tell me when he has had enough information, and sure enough he changed the subject when it was all done. Poor thing looked a bit scared, but he will be ok.

I slept at my folks place last night – hence why Isaw my nephew. It was cooler here than at mine, although we are getting an aircon fitted tomorrow tokeep it cooler.

 ive got some work ive got to do, but im trying not to feel too bad about not doing it. I should ring my boss, and let her knw whats happening since ihavent done that yet

ive got an appointment with a hematologist next tuesday. its not my doctor Bowtie – he’s on holidays, but this is someone who is looking after his patients.  my initial reaction was that i dont want to talkt to anyone except my doctor.. and its a feeling i cant shake, cos whilst im sure he has complete faith, ive known Dr Bowtie for over 18months now and I trust him…  i just hope that this locum doctor checks with my doctor before deciding on a treatment – or that my doctor decides the treatment and this doctor is just giving me the results and the plan…i want to make sure that its MY doctors decision and not this ones.

hmmm  thats enough for today

getting sore typing

im waiting on hubby to come back up and visit…  ive not heard from my friends today and i know they are all busy and im probably too sore to see anyone, and if they did visit i would regret it afterwards, its getting kinda boring watching tv…  but logically i know healing and recovery is not meant to be exciting

Leave a Comment