Saturday, 4 February 2012
Evoque The Great Titted Raven (GTR)
Friendship has to be THE most important thing in a girls life. I cannot begin to explain how much my girlfriends mean to me. I've always loved the little ditty about "reason, season, lifetime"
People come into your life for a reason, a season or a lifetime.
When you figure out which one it is,
you will know what to do for each person.
When someone is in your life for a REASON,
it is usually to meet a need you have expressed.
They have come to assist you through a difficulty;
to provide you with guidance and support;
to aid you physically, emotionally or spiritually.
They may seem like a godsend, and they are.
They are there for the reason you need them to be.
Then, without any wrongdoing on your part or at an inconvenient time,
this person will say or do something to bring the relationship to an end.
Sometimes they die. Sometimes they walk away.
Sometimes they act up and force you to take a stand.
What we must realize is that our need has been met, our desire fulfilled; their work is done.
The prayer you sent up has been answered and now it is time to move on.
Some people come into your life for a SEASON,
because your turn has come to share, grow or learn.
They bring you an experience of peace or make you laugh.
They may teach you something you have never done.
They usually give you an unbelievable amount of joy.
Believe it. It is real. But only for a season.
LIFETIME relationships teach you lifetime lessons;
things you must build upon in order to have a solid emotional foundation.
Your job is to accept the lesson, love the person,
and put what you have learned to use in all other relationships and areas of your life.
It is said that love is blind but friendship is clairvoyant.
— Unknown
My lifetime friends are well & truly here to stay. I don't think I have a say in that at all !! But I wouldn't have it any other way. I have extra sisters next to me that love me warts an' all. I get daily check up calls, call in's and They also check up on Dirk too. It's hard to receive all the support when I'm so used to being the one to offer it. It kind of makes you feel almost uncomfortable.... But that's because I'm not sick, and no matter which way I look at it, I still don't believe I am.
And then there's the people that come back into your life for whatever reason. I bumped into an old friend yesterday... He asked how I was !! That loaded question, do you just say " yeah good thanks" or do you go into the "c" conversation... On this particular occasion I took the latter. And he said "oh yeah ?? I have just gone through 3 years of chemo and stem cell replacement !! Give me your number, I'll call you" WTF !! And this "old friend" has just called and chatted to me about everything. Another person that has been "sent" to me. I cannot believe how lucky a girl can get. Talk about people out there looking out for me. One thing he said that I ally liked was when he asked what stage I was diagnosed at ? When I told him stage 1 he said " well I'm sorry to tell you this, but you're gonna live" haha loved it !!
.... And so here I sit, with one of my besties, sipping Moët and listening to music, giggling at stories and just sharing the silences in between..... There's nothing like it, but it's a girl thing :-)
Friday, 3 February 2012
Groundhog Day
Woahhhhh .... bloody hell....!! Talk about a smack around the face with a wet kipper (in that I need one !!) I've woken up with the fuzziest of feelings today. In fact as I write this I could actually still be back in bed asleep. I have no idea !! I'd ask someone to come and pinch me to see if I'm actually here at work, but I'm afraid of the long queue that might start to form outside my office.......
11am ...hahaha... just joking !!! Thank GOD it's not a repeat of yesterday... man, I couldn't do that again in a hurry. But I think I've discovered the way to beat the fog, retail therapy & vino - works a treat :-) could be expensive though....
Today has been so much better so far. Today I only feel like I've been slapped by a whitebait.... not too bad at all. I've been able to focus and actually get some work done too.....
Day7 ...... lunch at The Byrneleigh
It's 3:53 pm - seven minutes until beer o'clock.... why do people want meetings at this time of the day.... I feel like yelling F$%K OFF !!! but I'm pretending to be interested and nodding etc etc... blah blah blah.... yup ... strategy, compelling.... will be a good alliance..... yeah whatever... it's FRIDAY for god's sake !! phew... they've gone.... now where was I?
Oh yes.... 3:57pm mmmmmm
Drinks were good. I was not the centre of attention so for the 1st time in 10 days everything was normal for an hour. Extra work was asked of me at 5pm on a Friday & it felt good (god I'm sick !!) I have to say though. The wine was SHITE today. We really need to get a good wine orderer !! A choice of stale Chardonnay or stale Chardonnay is not ideal. Quick switch to a Vasse Felix red & I'm back in the conversation.... I wasn't sure driving home if I had chemo head or wine head. Hard to say as they feel pretty similar. But I was prepared to tell any cop that asked that it was Chemo head !! Yeah right !!
Pizza night tonight .... Which was gorgeous as always. But now as I sit relaxing in the big chair, all I can feel is pain in my back. And so once again, I'm forced to confront the reality !! Nother wine ?? .... Don't mind if I do !!
I'm not sure if I'm an absolute bitch or if it's just my natural personality shining through.... I'm irritable & very snappy.... I think most people would say its my natural disposition, I'm pretty sure Dirk's not seeing any new personality type. But the last thing I want is Sylvia back on the scene !!! Here's hoping for a good night's sleep :-)
11am ...hahaha... just joking !!! Thank GOD it's not a repeat of yesterday... man, I couldn't do that again in a hurry. But I think I've discovered the way to beat the fog, retail therapy & vino - works a treat :-) could be expensive though....
Today has been so much better so far. Today I only feel like I've been slapped by a whitebait.... not too bad at all. I've been able to focus and actually get some work done too.....
It's 3:53 pm - seven minutes until beer o'clock.... why do people want meetings at this time of the day.... I feel like yelling F$%K OFF !!! but I'm pretending to be interested and nodding etc etc... blah blah blah.... yup ... strategy, compelling.... will be a good alliance..... yeah whatever... it's FRIDAY for god's sake !! phew... they've gone.... now where was I?
Oh yes.... 3:57pm mmmmmm
Drinks were good. I was not the centre of attention so for the 1st time in 10 days everything was normal for an hour. Extra work was asked of me at 5pm on a Friday & it felt good (god I'm sick !!) I have to say though. The wine was SHITE today. We really need to get a good wine orderer !! A choice of stale Chardonnay or stale Chardonnay is not ideal. Quick switch to a Vasse Felix red & I'm back in the conversation.... I wasn't sure driving home if I had chemo head or wine head. Hard to say as they feel pretty similar. But I was prepared to tell any cop that asked that it was Chemo head !! Yeah right !!
Pizza night tonight .... Which was gorgeous as always. But now as I sit relaxing in the big chair, all I can feel is pain in my back. And so once again, I'm forced to confront the reality !! Nother wine ?? .... Don't mind if I do !!
I'm not sure if I'm an absolute bitch or if it's just my natural personality shining through.... I'm
Thursday, 2 February 2012
My Chemical Romance....
Woahhhhh .... bloody hell....!! Talk about a smack around the face with a wet kipper (in that I need one !!) I've woken up with the fuzziest of feelings today. In fact as I write this I could actually still be back in bed asleep. I have no idea !! I'd ask someone to come and pinch me to see if I'm actually here at work, but I'm afraid of the long queue that might start to form outside my office.
I thought I'd slept ok last night, but looking back there were quite a few broken hours, I remember 4am, 5am and 6am..... but the feeling of sluggishness in my body is like nothing I've ever experienced. My legs, arms and head feel like they are full of sludge....
On a brighter note, I'm pretty sure the tumours in my back are getting better. There is definitely less and less pain now. I'm not hobbling as much and it's getting gradually easier to move around. Shrink you bastards!! Be off wi ya !! - that's for you Jo ;-) It's been ages since I've worn a good pair of heels to work. Be nice to get them back on.
Still looking for that elusive dress for my friend's wedding (Kasey, that's you) Now that I'm going, I want it to be like "wow" - nothing that would outdo the most gorgeous bride of course, but I'm hoping to have tipped 40kg's by March, so will be a bit of a "reveal" too....
There is really very little information on Multiple Myeloma in Australia. And even less for the Perth area. I can't find much at all within Australian sites. I'm really looking forward to meeting a friend's mum on Saturday to chat. Just being able to hear someone else's experiences and ask any questions is going to really help me. I was thinking last night about it all, it's so hard to comprehend that this isn't just a temporary situation. It's not just going to be gone away in a couple of weeks..... I have absolutely no idea what to expect. I actually really truly believe I'm going to be fine and strong (and all that stuff) but it still seems so unreal.... I mean really ? for the rest of my life?
It's got the better of me today... I just couldn't focus at work a all. The feelings from the drugs are so strong today and it's freaking me out a bit. I'm not in any pain, not nauseous or headachey or anything, but the feeling of blood slushing around my body is beyond anything I've ever felt before. I can't sleep, rest or relax. So I've just been lying in bed, occasionally checking emails and willing the buzzing to stop. I know it's just part of getting used to it all. There's nothing anyone can do, I'm not feeling sorry for myself. I'm just .... Getting used to it. From everything I've read so far, I'm not experiencing anything unusual. It just is what it is. But FARK !! Stop now, I've had enough.... I want to get off !!
Maybe I'll go for a walk with my camera.... Or late night shopping ... Now there's an idea :-)
Day6....
Spent the past hour in Garden City wandering around in a daze... hobbling around until I saw my reflection in a mirror and thought... "what a twat" !! I looked pathetic.... and probably miserable too. So I stood up straight and pretended there was nothing wrong at all. OK so my back was actually aching quite a bit, but there was no need to be quite as obvious. I managed to put a smile on my face and purchase a nice new little black skirt for work. Browsed around for a little longer then thought, fuck it... I know what will make me feel better.....
.... and so here I am again, on my balcony watching the rain with a glass of wine :-) ahhhhh all is right with the world again !! heh heh .....
I thought I'd slept ok last night, but looking back there were quite a few broken hours, I remember 4am, 5am and 6am..... but the feeling of sluggishness in my body is like nothing I've ever experienced. My legs, arms and head feel like they are full of sludge....
On a brighter note, I'm pretty sure the tumours in my back are getting better. There is definitely less and less pain now. I'm not hobbling as much and it's getting gradually easier to move around. Shrink you bastards!! Be off wi ya !! - that's for you Jo ;-) It's been ages since I've worn a good pair of heels to work. Be nice to get them back on.
Still looking for that elusive dress for my friend's wedding (Kasey, that's you) Now that I'm going, I want it to be like "wow" - nothing that would outdo the most gorgeous bride of course, but I'm hoping to have tipped 40kg's by March, so will be a bit of a "reveal" too....
There is really very little information on Multiple Myeloma in Australia. And even less for the Perth area. I can't find much at all within Australian sites. I'm really looking forward to meeting a friend's mum on Saturday to chat. Just being able to hear someone else's experiences and ask any questions is going to really help me. I was thinking last night about it all, it's so hard to comprehend that this isn't just a temporary situation. It's not just going to be gone away in a couple of weeks..... I have absolutely no idea what to expect. I actually really truly believe I'm going to be fine and strong (and all that stuff) but it still seems so unreal.... I mean really ? for the rest of my life?
It's got the better of me today... I just couldn't focus at work a all. The feelings from the drugs are so strong today and it's freaking me out a bit. I'm not in any pain, not nauseous or headachey or anything, but the feeling of blood slushing around my body is beyond anything I've ever felt before. I can't sleep, rest or relax. So I've just been lying in bed, occasionally checking emails and willing the buzzing to stop. I know it's just part of getting used to it all. There's nothing anyone can do, I'm not feeling sorry for myself. I'm just .... Getting used to it. From everything I've read so far, I'm not experiencing anything unusual. It just is what it is. But FARK !! Stop now, I've had enough.... I want to get off !!
Maybe I'll go for a walk with my camera.... Or late night shopping ... Now there's an idea :-)
Day6....
.... and so here I am again, on my balcony watching the rain with a glass of wine :-) ahhhhh all is right with the world again !! heh heh .....
Wednesday, 1 February 2012
Humphff day......
So last night at the event was quite a plesant evening. I have to say, I didn't think Nathan Sharpe was especially riveting as a speaker, but he wasn't awful. Just a little uninspiring.... He seemed a nice chap, had a quick chat and a photo opportunity with him. Watch out society pages of WA !!!
I took my camera and snapped away over Kings Park as the sun set. Had a couple of glasses of vino and then we made an impromptu decision to have something to eat. So off to Matilda Bay. Had a gorgeous meal (great company)and a couple more vino's to soothe the soul ;-) .... I have a sneaking suspicion that my taste buds are getting affected by the chemo. There's a constant taste of "bottom of birdcage" in my mouth. A bit like having a hangover without the headache or shit feeling..... And I'm really quite thirsty most of the time. I was told I'd need to drink approx 3 liters a day. I think I'm doing around 2 at he mo. Bloody hell, I'll drown if I drink more !!
Slept ok last night too (yay) I think about 6-7 hours so was pretty ok this morning when I woke up. And today was also "low # of pills to take day". Only 1/2 aspirin for breaky. Rest day for the Cyclo & Dexa. (Thalidomide daily at nighttime) but having said that, I've been feeling the effects today I think. My blood feels funny (i know that sounds weird) but its like you keep feeling a slight rush around your body, but then you think you've just imagined it. (told you it was weird !!) I started to feel quite tired this afternoon, and a bit like I had jet lag. When you look around and then 2 seconds later your mind catches up with your body. So by 5pm I was well & truly ready for home.
Sitting at home now, having a water.... It's amazing ow much "stuff" you think about. My thoughts are in overdrive, flitting from one thing to another and not stopping for breath. I'm pretty sure mum is doing he same. She was awake at 3am this morning (uk time) on fb, commenting on my pages !! Hope you slept again mum :-) <3
Time to think about tea... Chicken parmigiana & salad I think.(nope not in the Thermomix tonight!!) I have a taste for a vino, but I really think I should have a night off..... ???
Oh, & I ordered Dirk's birthday pressie today too. Sooo excited about it. It's a bit special this year, bit that's all I'm saying. No hints.... Hope it gets here on time :-)
Day5... the new burger joint opened next door to work.
I took my camera and snapped away over Kings Park as the sun set. Had a couple of glasses of vino and then we made an impromptu decision to have something to eat. So off to Matilda Bay. Had a gorgeous meal (great company)and a couple more vino's to soothe the soul ;-) .... I have a sneaking suspicion that my taste buds are getting affected by the chemo. There's a constant taste of "bottom of birdcage" in my mouth. A bit like having a hangover without the headache or shit feeling..... And I'm really quite thirsty most of the time. I was told I'd need to drink approx 3 liters a day. I think I'm doing around 2 at he mo. Bloody hell, I'll drown if I drink more !!
Slept ok last night too (yay) I think about 6-7 hours so was pretty ok this morning when I woke up. And today was also "low # of pills to take day". Only 1/2 aspirin for breaky. Rest day for the Cyclo & Dexa. (Thalidomide daily at nighttime) but having said that, I've been feeling the effects today I think. My blood feels funny (i know that sounds weird) but its like you keep feeling a slight rush around your body, but then you think you've just imagined it. (told you it was weird !!) I started to feel quite tired this afternoon, and a bit like I had jet lag. When you look around and then 2 seconds later your mind catches up with your body. So by 5pm I was well & truly ready for home.
Sitting at home now, having a water.... It's amazing ow much "stuff" you think about. My thoughts are in overdrive, flitting from one thing to another and not stopping for breath. I'm pretty sure mum is doing he same. She was awake at 3am this morning (uk time) on fb, commenting on my pages !! Hope you slept again mum :-) <3
Time to think about tea... Chicken parmigiana & salad I think.(nope not in the Thermomix tonight!!) I have a taste for a vino, but I really think I should have a night off..... ???
Oh, & I ordered Dirk's birthday pressie today too. Sooo excited about it. It's a bit special this year, bit that's all I'm saying. No hints.... Hope it gets here on time :-)
Day5... the new burger joint opened next door to work.
Tuesday, 31 January 2012
3:21am
... Until 3:21 am !!! 3:21 !! WTF is all this about???
I was the girl that could go for a disco nap in a club at 2am then bounce back to the bar at 3am feeling much better !! If sleeping was an Olympic sport I'd be a champion medallist (well, insert quotation marks from Dirk here) !!! So it's a bit of a shock to me not to be able to glance at the clock and roll out of my slobber on one side of the pillow and over to the dry spot on the other side.
Insomnia.... not something I've ever had to deal with really. Certainly not night after night. From 3:21am this morning I was wide awake.
I managed to read my emails and all of my Facebook within the first 20-30 mins. So next was a bit of blogging. (reading type) and research..... now I know some of you reading this are going to talk about some meditation techniques and calming ideas to help me go back to sleep as soon as possible. Believe me I am definitely considering all of them. I'm not ignoring the advice, but at the moment I'm just going with the flow of what's on my mind...... and anyway, by about 4:30am I was shopping for a dress for my friend's wedding :-) So as you can see not all wasted time going on !! .... (I haven't found a dress yet, so no purchases were made)
Morning pill regime was pretty easy - I had the shakes in my hands earlier, but that could have been the two coffee's I had before 9am instead of anything else.
Tuesday so far has been pretty ok. Meetings all morning including a work review on my business department - all good stuff to keep the mind occupied and plenty to focus on going forward. I guess it's hard for the company to try and work around me too - at the end of the day they have a business to make profitable. But I have to say I feel very supported. My boss and I talked about contingency plans IF they arise and how we will manage going forward. I think as long as I communicate my happenings, all will stay good for now. (Fingers crossed) Taking it one day at a time......
Later this afternoon / evening, my sales team & marketing team and our partners are off to a Mining evening with Nathan Sharpe (apparently some Australian Rugby player) We booked this ages ago so have no excuse not to go. It's up at Kings Park so am hoping to get my Day 4 picture from up there....
I must admit it's weird writing an online "diary" and then realising that people will be reading it. I have to keep remembering that it's for me and for no other reason - so then why wouldn't I just keep it in a Word.doc ??? hmmm....
Day4 Pic....
I was the girl that could go for a disco nap in a club at 2am then bounce back to the bar at 3am feeling much better !! If sleeping was an Olympic sport I'd be a champion medallist (well, insert quotation marks from Dirk here) !!! So it's a bit of a shock to me not to be able to glance at the clock and roll out of my slobber on one side of the pillow and over to the dry spot on the other side.
Insomnia.... not something I've ever had to deal with really. Certainly not night after night. From 3:21am this morning I was wide awake.
I managed to read my emails and all of my Facebook within the first 20-30 mins. So next was a bit of blogging. (reading type) and research..... now I know some of you reading this are going to talk about some meditation techniques and calming ideas to help me go back to sleep as soon as possible. Believe me I am definitely considering all of them. I'm not ignoring the advice, but at the moment I'm just going with the flow of what's on my mind...... and anyway, by about 4:30am I was shopping for a dress for my friend's wedding :-) So as you can see not all wasted time going on !! .... (I haven't found a dress yet, so no purchases were made)
Morning pill regime was pretty easy - I had the shakes in my hands earlier, but that could have been the two coffee's I had before 9am instead of anything else.
Tuesday so far has been pretty ok. Meetings all morning including a work review on my business department - all good stuff to keep the mind occupied and plenty to focus on going forward. I guess it's hard for the company to try and work around me too - at the end of the day they have a business to make profitable. But I have to say I feel very supported. My boss and I talked about contingency plans IF they arise and how we will manage going forward. I think as long as I communicate my happenings, all will stay good for now. (Fingers crossed) Taking it one day at a time......
Later this afternoon / evening, my sales team & marketing team and our partners are off to a Mining evening with Nathan Sharpe (apparently some Australian Rugby player) We booked this ages ago so have no excuse not to go. It's up at Kings Park so am hoping to get my Day 4 picture from up there....
I must admit it's weird writing an online "diary" and then realising that people will be reading it. I have to keep remembering that it's for me and for no other reason - so then why wouldn't I just keep it in a Word.doc ??? hmmm....
Day4 Pic....
Monday, 30 January 2012
Mondayitis
So today is Monday.... Sunday came and went far too quickly (as always). Spoke to sis in the morning for a daily update. Did the "drop in" on Nags for a glass of water (yes Nags & I drank water, but I think you can blame the Bextrum's the night before for that !!) and she has put me in touch with her sis-in-law's mum who also has MM. We are catching up for a chat next weekend - this is such a nice thing for me, to get to talk to someone else that has already been through what I am starting..... I've started a list of questions already !!
Sat and watched a bit of the cricket at South Perth, then back to the poolside to finish my 4th book of the year !! - gotta love Kindle.
Night time seems to be the worst at the moment, usually I can sleep through anything, but at the moment, if I wake up, that's it ! I'm awake mulling over stuff in my mind for the next 2-3 hours.... last night was no exception. I started wondering about all the side effects, you start noticing every twitch in your body and wondering if it's the drugs working. At the moment, my tumours are aching. It's as though I can feel the drugs attacking them and they are fighting it. But then again, it could all be just in my mind. Neurotic pondering's as you can see !! Woke at 2:41 and fell asleep as dawn was breaking.... only to be woken again at 7am by the guy coming to fix the pool leak (for the 4th time I might add... but that's a whole other blog !!!) So up and at 'em and off to work.
So far I've been feeling pretty flat today.... I'm trying to get in touch with my feelings and moods so I can recognise the signs and work on them..... but easier said than done. There's definitely plenty of work I can be doing to keep me occupied, but when the words "Mutiple Myeloma" and "Cancer" keep popping into your head without warning it's more frustrating than anything else. I keep saying "Fuck Off!" to them, but they're persistent little buggers.
Dr Ben's office called 1st thing to say I needed to go in urgently for another test. Apparently to dispense the Thalidomide I should have had a pregnancy test. They are not supposed to have given it to me unless it was all done. So had to dash down to SJOG Subi for a quick blood test and now back at work again.....
lunch is over so back to it......more later
Day 3 photo of the day....
The rest of the Monday passed with some mild feelings of despair hanging around... Dirk took me out to tea to cheer me up and was trying to lift my spirits, but I couldn't stop the flat feelings at all. Even closing a deal at work (from the restaurant at 8:30pm) didn't seem to appease the gloom.
So after taking my final pill for the evening I hit the sack and drifted off........
Sat and watched a bit of the cricket at South Perth, then back to the poolside to finish my 4th book of the year !! - gotta love Kindle.
Night time seems to be the worst at the moment, usually I can sleep through anything, but at the moment, if I wake up, that's it ! I'm awake mulling over stuff in my mind for the next 2-3 hours.... last night was no exception. I started wondering about all the side effects, you start noticing every twitch in your body and wondering if it's the drugs working. At the moment, my tumours are aching. It's as though I can feel the drugs attacking them and they are fighting it. But then again, it could all be just in my mind. Neurotic pondering's as you can see !! Woke at 2:41 and fell asleep as dawn was breaking.... only to be woken again at 7am by the guy coming to fix the pool leak (for the 4th time I might add... but that's a whole other blog !!!) So up and at 'em and off to work.
So far I've been feeling pretty flat today.... I'm trying to get in touch with my feelings and moods so I can recognise the signs and work on them..... but easier said than done. There's definitely plenty of work I can be doing to keep me occupied, but when the words "Mutiple Myeloma" and "Cancer" keep popping into your head without warning it's more frustrating than anything else. I keep saying "Fuck Off!" to them, but they're persistent little buggers.
Dr Ben's office called 1st thing to say I needed to go in urgently for another test. Apparently to dispense the Thalidomide I should have had a pregnancy test. They are not supposed to have given it to me unless it was all done. So had to dash down to SJOG Subi for a quick blood test and now back at work again.....
lunch is over so back to it......more later
Day 3 photo of the day....
The rest of the Monday passed with some mild feelings of despair hanging around... Dirk took me out to tea to cheer me up and was trying to lift my spirits, but I couldn't stop the flat feelings at all. Even closing a deal at work (from the restaurant at 8:30pm) didn't seem to appease the gloom.
So after taking my final pill for the evening I hit the sack and drifted off........
Sunday, 29 January 2012
Day One - Chemo & Coldplay
So Friday was D-Day (drug day) I had an appointment with Dr Ben to go and get the chemo. Appt. was at 2pm and surprisingly it took about an hour to go through the whole process. By the time I got down to the pharmacy the drug company in the eastern states had closed for the weekend, so they said they couldn't dispense the Thalidomide.... after some calling around, they got through it all and after a coffee and some more waiting we left with a carrier bag of stuff.
It's a confusing scenario, 10 pills of this on days 1,8 & 15, and 10 pills of another on days 1-4 & 12-15 (taken in the mornings after food) then one pill a day for 2 weeks (at night within one hour of food), then up the dose to 2 pills, 1/2 aspirin to keep the blood flowing........ I've decided in need an old lady monthly pill sorter outerer !!
So anyway, 1st lot of morning pills went down without too much issue. Put Coldplay on the Sonos and skulled some milk. Then it was off to the hairdressers and a quick stop by the cricket (still 42C on Saturday) before heading back to home for a dip in the pool and a cool down.
Nana nap was next, then thai takeaway and a glass of vino. Had a bit of a headache most of the day, but who's to know if it was just because of the stinking heat and nothing more. I'm betting most of Perth were feeling a little headachy yesterday !! Water is going to be pretty important. Three litres a day and stay close to a toilet !!!
Quick call to the besty for a update and the day was gone. All in all, a pretty normal Saturday.....
I have to say though, one of the most overwhelming parts of this so far has been the outpouring of love from everyone. I'm a pretty open person - I don't really keep things like this to myself, but even though I've put it out there for all to know, the messages from everyone have been incredibly touching. I feel very humbled that so many people would reach out. Thank you if you are reading this part of my blog. It means so much.
The other thing I've decided to do is the 365 day photo challenge. One photo a day for a year. Day one and two are done (day one was my pills)
Day two...... what else :-)
I can't believe how lucky I am to have these two guys in my life - Charlie is so gentle and soft, Maverick is a cheeky monster, but certainly knows when mum needs a hug and he will not leave my side if I am not feeling 100%. Whoever sent these two, to Dirk and I, must have chosen them very carefully (ok that might have been a bit deep - sorry about that !!)
......
It's a confusing scenario, 10 pills of this on days 1,8 & 15, and 10 pills of another on days 1-4 & 12-15 (taken in the mornings after food) then one pill a day for 2 weeks (at night within one hour of food), then up the dose to 2 pills, 1/2 aspirin to keep the blood flowing........ I've decided in need an old lady monthly pill sorter outerer !!
So anyway, 1st lot of morning pills went down without too much issue. Put Coldplay on the Sonos and skulled some milk. Then it was off to the hairdressers and a quick stop by the cricket (still 42C on Saturday) before heading back to home for a dip in the pool and a cool down.
Nana nap was next, then thai takeaway and a glass of vino. Had a bit of a headache most of the day, but who's to know if it was just because of the stinking heat and nothing more. I'm betting most of Perth were feeling a little headachy yesterday !! Water is going to be pretty important. Three litres a day and stay close to a toilet !!!
Quick call to the besty for a update and the day was gone. All in all, a pretty normal Saturday.....
I have to say though, one of the most overwhelming parts of this so far has been the outpouring of love from everyone. I'm a pretty open person - I don't really keep things like this to myself, but even though I've put it out there for all to know, the messages from everyone have been incredibly touching. I feel very humbled that so many people would reach out. Thank you if you are reading this part of my blog. It means so much.
The other thing I've decided to do is the 365 day photo challenge. One photo a day for a year. Day one and two are done (day one was my pills)
Day two...... what else :-)
I can't believe how lucky I am to have these two guys in my life - Charlie is so gentle and soft, Maverick is a cheeky monster, but certainly knows when mum needs a hug and he will not leave my side if I am not feeling 100%. Whoever sent these two, to Dirk and I, must have chosen them very carefully (ok that might have been a bit deep - sorry about that !!)
......
The Start of it All......
I can't actually remember how it all started (or when) I remember thinking my back was getting sore (or weak as I kept telling Dirk - my partner) around Novemeber 2011 time.... I thought it was to do with my weight loss as I'd had gastric sleeve surgery in July and had lost 30 odd kg's by Nov.
I really started to notice it in Dec when I went home to England to surprise mum & dad with a "get better soon" hug. Mum was going through all her liver problems (on top of her cancer) and was just not getting better, I needed to see her more than anything.
By the time I left UK, I was hobbling and limping. The journey home was a nightmare as I had heavy cases & had to walk everywhere.
On return to Oz, it all seemed to just get worse by the day, so I went to see a Physio. He suggested I had a posterially rotated sacral iliac left sacrum joint. So I started exercises, bought a SIJ belt and continued on.
After a couple of weeks it was worse still. My sis was here with her kids from NZ for Christmas & I was struggling to sleep yet alone walk !! I ended up going to see a different Physio, purely as he was closer to home, and after 3 treatments he asked if I'd go for an MRI.
Yep, no problems, I thought, just get this bloody back sorted out !!!
Had the MRI on 11th Jan 2011 and then just waited for the report. My physio called me at 7.30am on Thursday morning saying he thought I'd better go to see my GP as the report had shown up something he didn't think was something he could treat. He said he's fax the report to my Dr and that I should call for an appointment.
I just assumed there was some bone issue that was out of the realms of physio treatment. So called my GP and as soon as I mentioned the fax report they asked me to come in immediately.
At midday, I sat in my Dr's office talking about my weight loss and recent happenings (as I hadn't been to the Dr's for about 7-8 months) and then he told me I would need to go and see a haematologist. He showed me the report (which was full of jargon words I didn't understand at all, but then ending with a summary that said "...... consistent with Multiple Myeloma" still this meant nothing. But as my Dr started to talk I realised something wasn't quite right. I asked him.... "is this like cancer of the blood?" he looked at me and said "my dear, lets not jump ahead, we need to rule out all possibilities"
He tried then to get me an appointment with a haematologist. Urgently!
It wasn't until I got back in my car and started to drive home that it began to dawn on me that things weren't as they should be..... I called Dirk and broke down into tears. He was on his way home immediately.
The waiting for appointments is the worst thing of all. I needed answers now, but obviously so does everyone else. I heard nothing for the rest of Thursday and Friday, so I called my Dr back and he jumped to action and got me an appointment with the haematologist for the following Tuesday. Along with blood tests etc o the same day.
Then it was into hospital for 3 days of tests.
First day was an X-Ray....
Second day was a bone marrow biopsy and bone core sample. (a bit like exploration drilling for iron ore but in my back - take a core sample and send it off to the lab !!)
Third day was the CT scan & tissue biopsy.
None of them were really as bad as I thought they'd be, just uncomfortable. And when all you want is answers then you will sit through anything.
My specialist (Dr Ben) cam back later that afternoon with the results of "most" of the tests. Things were looking good. So far there were no signs of irregularities in my results to indicate anything. Bloods, bone marrow plasma etc etc all normal range.
So over that weekend we were feeling pretty hopeful. I still didn't say too much as I hadn't told my family. It would be ridiculous to put them through more stress until I had the all clear and could then relay the "story"
On Monday at work, I was feeling so positive, I started to tell my work colleagues about the previous 2 weeks. I kind of wanted them to understand that if I'd been a bit all over the place, they could see why. Not an excuse, but I think a few things at work had got missed.... I was feeling a bit guilty about it all.
Tuesday at 5pm I had my final results from the other tests. Dirk met me at Dr Ben's office and we sat waiting discussing our days so far. We walked in around 5:10pm and sat down. He looked at me and said...
"unfortunately the results have come back showing Multiple Myeloma"
We were absolutely gobsmacked. I told him I didn't understand, all the previous tests were showing "normal ranges in my blood" He went on to explain the more stringent tests that had been performed which show up a rarer type of Myeloma called non-secretery Multiple Myeloma (NSMM) Harder to detect, but still there.
It was at this point that I think it really started to hit me. Dirk & I had gone through so many emotions in the past two weeks, but nothing prepares you for this moment. All you can do is take a deep breath and keep listening to the diagnosis. How it is going to change your life and whats next.....
And at the same time... all I could think of was how I would tell my family.... how could they cope with another cancer diagnosis in the family in one year ?
After an hour of listening and asking as many questions as we could think of, the decision was to start chemo immediately. I was going onto a cocktail of CTD (cyclophosphamide, thalidomide, dexamethasone) There were forms to fill in and registration number to obtain from the drug company before you can even get a prescription. So it was straight into it. Dr Ben said he'd call me the next day so I could go back in and pick everything up....... and so then we went home.
Looking back to 5 days ago (as I write this) I can't really remember the rest of Tuesday evening. Dirk is amazing and all I know is that he is right there next to me. We hugged, cried, stared a lot and then carried on berating each other as normal !
Wednesday, I got up and went to work. I needed to keep my mind busy and occupied with the day to day stuff that had built up at work. Telling people was hard - especially as I'd pretty much told most people that I was clear. But as always, there's a reason we are called "human kind" the support, kindness and love that everyone showed was overwhelming. I realised how lucky I was to be working in a company that fully supported me both personally and professionally.
Wednesday evening as I drove home from work (as it happened, I couldn't pick up my chemo drugs as the registration hadn't come through) I knew it was time to call home. Dirk was at cricket training so I walked in the door and picked up the phone.
Dad answered, he quickly asked how my back was going so it was straight into the explanation. Needless to say, it was a heart wrenching call. To put that to your dad when they are 25,000kms away and no chance of a hug for comfort is hard. Dad put me straight onto mum as she was obviously watching dad on the phone but couldn't hear what was being said..... so I repeated the news to mum. I didn't want to hang up, but knew they would need some time to process the news. I called them back after an hour and we had a better chat. I wanted them to know how strong and positive I am, that I have Dirk and my friends here and that I'm certainly not alone..... and most importantly that I was going to beat it - I was OK.
We decided that with the time difference, whoever got to speak to Jo or James first would break the news. Jo was on her way home from UK back to NZ after a flying hug visit to see mum. James was in London for work and I didn't want him to find out during his working day.....
I actually felt so much better after speaking to mum and dad. I'm not 100% sure they felt the same, however once we had got over the initial shock, it was very much a "chin up" attitude.
Thursday was Australia Day - we'd planned to have our housewarming / xmas party on this day. It was going to be 42C and I was cooking 7 roasts !! (for hot roast rolls !! yes I'm an idiot) It was so nice having everyone around - bloody stinking hot, the pool gradually went from quite refreshing to tepid bath water temperature. But, I think it went ok.... hopefully I didn't put a dampener on the mood, but I don't think I did. The wines stayed chilled and when the fireworks started so did mother nature's lightening show too.
I ended up doing a runner to bed halfway through a really nice glass of Henschke Kyneton 2008 with Kim (Dirk's brother) but never mind hey !! ;-)
Drug pick up day was to be Friday.......
I really started to notice it in Dec when I went home to England to surprise mum & dad with a "get better soon" hug. Mum was going through all her liver problems (on top of her cancer) and was just not getting better, I needed to see her more than anything.
By the time I left UK, I was hobbling and limping. The journey home was a nightmare as I had heavy cases & had to walk everywhere.
On return to Oz, it all seemed to just get worse by the day, so I went to see a Physio. He suggested I had a posterially rotated sacral iliac left sacrum joint. So I started exercises, bought a SIJ belt and continued on.
After a couple of weeks it was worse still. My sis was here with her kids from NZ for Christmas & I was struggling to sleep yet alone walk !! I ended up going to see a different Physio, purely as he was closer to home, and after 3 treatments he asked if I'd go for an MRI.
Yep, no problems, I thought, just get this bloody back sorted out !!!
Had the MRI on 11th Jan 2011 and then just waited for the report. My physio called me at 7.30am on Thursday morning saying he thought I'd better go to see my GP as the report had shown up something he didn't think was something he could treat. He said he's fax the report to my Dr and that I should call for an appointment.
I just assumed there was some bone issue that was out of the realms of physio treatment. So called my GP and as soon as I mentioned the fax report they asked me to come in immediately.
At midday, I sat in my Dr's office talking about my weight loss and recent happenings (as I hadn't been to the Dr's for about 7-8 months) and then he told me I would need to go and see a haematologist. He showed me the report (which was full of jargon words I didn't understand at all, but then ending with a summary that said "...... consistent with Multiple Myeloma" still this meant nothing. But as my Dr started to talk I realised something wasn't quite right. I asked him.... "is this like cancer of the blood?" he looked at me and said "my dear, lets not jump ahead, we need to rule out all possibilities"
He tried then to get me an appointment with a haematologist. Urgently!
It wasn't until I got back in my car and started to drive home that it began to dawn on me that things weren't as they should be..... I called Dirk and broke down into tears. He was on his way home immediately.
The waiting for appointments is the worst thing of all. I needed answers now, but obviously so does everyone else. I heard nothing for the rest of Thursday and Friday, so I called my Dr back and he jumped to action and got me an appointment with the haematologist for the following Tuesday. Along with blood tests etc o the same day.
Then it was into hospital for 3 days of tests.
First day was an X-Ray....
Second day was a bone marrow biopsy and bone core sample. (a bit like exploration drilling for iron ore but in my back - take a core sample and send it off to the lab !!)
Third day was the CT scan & tissue biopsy.
None of them were really as bad as I thought they'd be, just uncomfortable. And when all you want is answers then you will sit through anything.
My specialist (Dr Ben) cam back later that afternoon with the results of "most" of the tests. Things were looking good. So far there were no signs of irregularities in my results to indicate anything. Bloods, bone marrow plasma etc etc all normal range.
So over that weekend we were feeling pretty hopeful. I still didn't say too much as I hadn't told my family. It would be ridiculous to put them through more stress until I had the all clear and could then relay the "story"
On Monday at work, I was feeling so positive, I started to tell my work colleagues about the previous 2 weeks. I kind of wanted them to understand that if I'd been a bit all over the place, they could see why. Not an excuse, but I think a few things at work had got missed.... I was feeling a bit guilty about it all.
Tuesday at 5pm I had my final results from the other tests. Dirk met me at Dr Ben's office and we sat waiting discussing our days so far. We walked in around 5:10pm and sat down. He looked at me and said...
"unfortunately the results have come back showing Multiple Myeloma"
We were absolutely gobsmacked. I told him I didn't understand, all the previous tests were showing "normal ranges in my blood" He went on to explain the more stringent tests that had been performed which show up a rarer type of Myeloma called non-secretery Multiple Myeloma (NSMM) Harder to detect, but still there.
It was at this point that I think it really started to hit me. Dirk & I had gone through so many emotions in the past two weeks, but nothing prepares you for this moment. All you can do is take a deep breath and keep listening to the diagnosis. How it is going to change your life and whats next.....
And at the same time... all I could think of was how I would tell my family.... how could they cope with another cancer diagnosis in the family in one year ?
After an hour of listening and asking as many questions as we could think of, the decision was to start chemo immediately. I was going onto a cocktail of CTD (cyclophosphamide, thalidomide, dexamethasone) There were forms to fill in and registration number to obtain from the drug company before you can even get a prescription. So it was straight into it. Dr Ben said he'd call me the next day so I could go back in and pick everything up....... and so then we went home.
Looking back to 5 days ago (as I write this) I can't really remember the rest of Tuesday evening. Dirk is amazing and all I know is that he is right there next to me. We hugged, cried, stared a lot and then carried on berating each other as normal !
Wednesday, I got up and went to work. I needed to keep my mind busy and occupied with the day to day stuff that had built up at work. Telling people was hard - especially as I'd pretty much told most people that I was clear. But as always, there's a reason we are called "human kind" the support, kindness and love that everyone showed was overwhelming. I realised how lucky I was to be working in a company that fully supported me both personally and professionally.
Wednesday evening as I drove home from work (as it happened, I couldn't pick up my chemo drugs as the registration hadn't come through) I knew it was time to call home. Dirk was at cricket training so I walked in the door and picked up the phone.
Dad answered, he quickly asked how my back was going so it was straight into the explanation. Needless to say, it was a heart wrenching call. To put that to your dad when they are 25,000kms away and no chance of a hug for comfort is hard. Dad put me straight onto mum as she was obviously watching dad on the phone but couldn't hear what was being said..... so I repeated the news to mum. I didn't want to hang up, but knew they would need some time to process the news. I called them back after an hour and we had a better chat. I wanted them to know how strong and positive I am, that I have Dirk and my friends here and that I'm certainly not alone..... and most importantly that I was going to beat it - I was OK.
We decided that with the time difference, whoever got to speak to Jo or James first would break the news. Jo was on her way home from UK back to NZ after a flying hug visit to see mum. James was in London for work and I didn't want him to find out during his working day.....
I actually felt so much better after speaking to mum and dad. I'm not 100% sure they felt the same, however once we had got over the initial shock, it was very much a "chin up" attitude.
Thursday was Australia Day - we'd planned to have our housewarming / xmas party on this day. It was going to be 42C and I was cooking 7 roasts !! (for hot roast rolls !! yes I'm an idiot) It was so nice having everyone around - bloody stinking hot, the pool gradually went from quite refreshing to tepid bath water temperature. But, I think it went ok.... hopefully I didn't put a dampener on the mood, but I don't think I did. The wines stayed chilled and when the fireworks started so did mother nature's lightening show too.
I ended up doing a runner to bed halfway through a really nice glass of Henschke Kyneton 2008 with Kim (Dirk's brother) but never mind hey !! ;-)
Drug pick up day was to be Friday.......
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