Tell the bar that we don't want no glass .... Just bottles and i'm buying everybody one each ........ Yes so bring the Veuve Clicquot ....... D about to hit the big 3 0 ..... Party like it's Carnival in Rio ...... Life's too short, Danny Devito ...... Yo, we live, we die, we give, we try, we kiss, we fight ....... All so we can have a good time .......

Hellloooooooo !!
For ten years !!!
It feels like it has been that long since my last post. It's funny how caught up in life I have once again become now that the drama has passed. It's like it never happened. Last year is definitely just a distance memory. I've even stopped saying things like "just think, this time last year ...." It briefly comes to mind, but is just as quickly dismissed as more important things come up.

Vancouver

Life is back in the fast lane. I have started traveling again (for work) Had a quick round-the-world stint to Vancouver - London (incl. a quick weekend at "home") - Dubai - Perth. Although the final legs took their toll on me and I came home with sore throat and head cold. But other than that all good. Not to mention the new suitcase I had to buy so I could fit my purchases in !! Note to self... buy a bigger suitcase for next time and take nothing !!

Dream situation !!

I have to have a rant though.... this morning I was on the way to work and this cyclist was all over the road. Weaving in and out of cars.... when he felt like it, he was on the footpath, when he didn't he was on the road.... and then, because my wheels went over the short starting point of the bike lane (literally a 15M long bike lane) he whacked my car roof and abused me. Needless to say my middle finger went straight up. My gutter mouth shouted abuse at him and I carried on. But it's one of those moments that leaves you fuming. There were so many things I wanted to shout at him. Like "make up your mind if you want to be a car, pedestrian or cyclist ...... you twat" or "you look like you've sharted in those ridiculous bike pants..... loser" but the one thing that cyclists have over us is that they can be off pretty quick and they all look the same so you can't report them.

Rant over.
 It appears I might be aging !! WTF ?? Yes how could that happen? I ask myself the same question every single day..... for the past 7 months I've had a pretty bad case of tennis elbow. Now for those of you that know me, you will understand. I mean, if it wasn't for my passion for school and work I would have been a tennis superstar !!  And my prowess on the tennis court on a regular basis has left me with a poorly elbow. I've been on anti-inflammatory pills every day, tried acupuncture, massage and physio, but nothing has helped. Dr Ben sent me for more blood tests and x-rays but nothing. So he referred me to a rheumatologist. I have now had further blood tests, another set of x-rays and an ultrasound. And guess what?.... it's tennis elbow !!!! I also have a touch of osteoarthritis in my hands, which is basically bought on by age !!! $1000+.... thanks for coming !! I could have looked in the mirror, checked out the crow's feet and given that diagnosis.......
On a brighter note though, my blood tests continue to be amazingly normal. Dr Ben couldn't stop grinning at my last appointment. I think I'm actually his poster child !!

So going backwards in time again, my work trip had some amazing moments. I was able to spend a weekend at "home" with my bro, sil and family. Unfortunately dad was away so we had to have a party at his house without him. I was able to catch up with friends who couldn't make it to our wedding in Jan. People that I grew up with and also helped mum in her last few months. It was also the anniversary of mum's death while I was there. I was soooo nervous about getting to England. I hadn't been back since before "everything". Last time I was there was Dec2011 when I surprised mum with a visit because she was sick. I was scared about the feelings I would have when I got there. I spent the first two hours of the flight from Vancouver to London crying under a blanket because I was petrified. But when I got there it was all good. It was not scary, it wasn't awful, it was nice to be home. It didn't feel strange..... On the Sunday we went to mum's "memorial place" it's not really a grave, and besides I could hear mum in my head saying "Don't know why you're going there, I'm not sitting under the ground waiting for people to visit !!" But I wanted to put some flowers there, and my sis had asked me to take some tulips, so I did. It was a gorgeous sunny day. The kids ran around the church gardens and it was happy.
So after a few sunny tears, we decided to hit the pub for some lunch. Perfect and just what mum would have wanted us to do !! After that it was back down to London for more work.....
.... and after that I flew home... via Dubai !! OMG what a place !! It was amazing. My besty lives there so she picked me up and showed me around. I have never been to a place like it. The shopping... the buildings.... the service !! LOVED it..... needless to say my new suitcase took more of a beating !! If you ever get to go to Dubai, you must go out to "Brunch" on a Friday..... I can't tell you any more...... just do it - you'll thank me.
Next stop is our honeymoon !!! I cannot WAIT !! 2 weeks in Koh Samui..... sun....sand and Thai food - what more could a girl want. Not to mention a wedding too. It's going to be amazing, I just know it. It cannot come soon enough.

 

But in the mean time, it's back to work...... as I type my hands are aching and my tennis arm hurts................................... but that's just old age !!!

(Go West) Sun in wintertime ….. (Go West) We will do just fine …..(Go West) Where the skies are blue ….. (Go West, this is what we're gonna do) ……

Date Night - Celebrations

It's been an inordinate amount of time since my last post !!  My last post was remission day !! Although I had been for a bone marrow aspiration and had to have one last set of bloods done just to make sure. The aches and pains haven't really gone away. My left foot is gradually losing feeling. I just have pins and needles and numbness in it now. Dr Brad said this was a result of the Thalidomide. Peripheral Neuropathy ..... I was surprised it had come so late. I stopped taking the Thalidomide in July, so why numbness now? Another question for my next appointment I guess......
I stopped wearing hats a few weeks ago. The weather is getting warmer and I just couldn't be bothered any more. After surviving the supermarket fiasco, I figured it couldn't get any worse than that so now I am the proud owner of a head of "bum fluff" as my dad calls it !! It's actually quite liberating once you get used to it. Nothing messes up my hair and I don't have to worry about colour, styles, humidity etc etc. !!! I just rub some sun screen though it and walk out the door.
So .... on Friday 19th October 2012 (which would have been my nana's 110th birthday) I went back to see Dr Brad - hopefully for the last time. We walked into his office at 9am (for our 8:30am appointment) and sat down. And he had the BEST news ever !! Everything had come back clear !! The bone marrow was good. My bloods were all normal, my Kappa results were 11 (they were 402 when I was diagnosed) The news was amaze balls !!! Totes amaze balls !!! I actually got up and hugged Dr Brad. He was also beaming from ear to ear. So that was that. All over.... he said he was very proud of me (such a nice Dr) and that he couldn't have been happier. I know not everyone gets as good a run as I have had. I've been extremely lucky for it all to have gone so well.
Next step is to go back to Dr Ben. Dr Brad was going to send the final report back to him and said to make an appointment soon - within the next 6 weeks - for a follow up.

When I walked out to reception and they asked if I needed a follow up appointment with Dr Brad I almost screamed "NO !! I DON'T NEED ONE, I'M IN REMISSION AND AM DISCHARGED !!" The girls on reception were all happy too. I had my Zometa appointment so Dirk left to go back to work and I went through to have my infusion. This will have to continue for a couple of years. But I don't mind that. If it keeps me healthy and strong I'll do anything. I may have to go on a maintenance drug.... Dr Brad thought maybe back on the Thalidomide, but after telling him about my numb feet, he said to really think about it and discuss with Dr Ben. As this was probably the cause, he wasn't sure it would be a great idea as it could continue to get worse.
I've also started back at work - in my new role too - Global Sales Manager !! Sounds very fancy hey !! Hmmm... I'll let you know just how fancy in a few months !!! It's been really full on since I got back. I'm still doing parts of my old job PLUS the new role all in 3 days a week. So I'm not sure if the total exhaustion is coming from my transplant or just plain old "back to work" !!!  Probably both if I'm really honest. But so far it's going OK.

Food at 1907

There has been a little bit of celebration too. Dirk & I went out for a fanTASTic meal on the night of 19th. We used one of our Engagement pressies (a voucher) for a restaurant in Perth called 1907 - OMG wowsers.... it was gorgeous. Great food, great company (my fiancé) and great service. We loved it. New fave restaurant I think.
Cricket is also back on, which means there have been a couple of catch up's at the club !! And then there's just the day to day celebration of life itself !! (a good excuse methinks) But I've realised that I don't have the capacity to drink as much any more. I just need to remind my brain of this fact before I fall over !! A challenge for me...... I totally blame my parents though.... its a genetic thing !!
Other than that, wedding plans seem to be coming along. I'm still not sure if I have everything covered or not. We went out to the wedding venue last weekend to chat about the day. I must admit, it's all seeming a little too easy. I'm pretty sure I must have forgotten a whole heap of things.... I guess I'll find out on the day.

Mexican Night - Ole !!

But I just can't wait to have the family here. Soooooo excited about it all. And not just my family, but all of my friends. People I haven't had the chance to see for a while. My besty from school, my cousins from the US, Uncle Alan, my gorgeous friend Maxy and her new little girl, not to mention my besty bridesmaid who was booking her ticket yesterday (YAY) from Dubai..... and then just everyone. I'm not going to bore you with my guest list !!!
Dad is on his way to us now. And this is one person I can't wait to see. It will have been almost one year to the day since I last saw him. I went back to UK last Dec to surprise mum when she was sick. I just turned up on the doorstep and rang the bell. They didn't know I was coming. That was the last time I saw dad, and that was also when my back pain started to get really bad too...... it's amazing what can happen in a year !!! But just to see everyone is beyond exciting for me at the moment. Just the thought brings tears to my eyes.
Just 63 days to go.......

Special Friends..... in stripes !!!

Hands.... touchin' hands..... Reaching out ...... Touching me .... Touching you .....

It was mum's birthday on Tuesday. She would have been 69. I still hear her laugh and her voice in my head. And in every image she's laughing.... and then I cry.... again. Does it ever get any easier? or not hurt so much? I get that pain in my throat when you're trying to stop the crying. But all over the world on Tuesday, we were having a toast to mum. Bacardi & coke's were being raised to the sky in her honour. I actually had an Oyster Bay SB. They didn't have a Bacardi in the restaurant we went to. So I chose the next best thing. 

My First Orchid Bloom !

One fantastic thing that I'm sure mum has had a hand in this week, is my orchid has flowered. It is the first time in five years I have managed to get my orchids to bloom. Mum always had loads of flowers on her orchids and I was always jealous. So this was awesome for me. I have one flower that opened yesterday and about four more to come.

This past week has been a good one though. I decided I'd had enough of lying low, and the smell of anti-bacterial hand sanitiser was really getting to me. The smell of it now actually brings on nausea !! Over dosed on the stuff I think !! It was time to start living again. I was happy to be semi-sensible. But I could tell from the way I was feeling that I was on the mend. So the "no visitors" ban was lifted and I have gradually re-entered the land of the germ infested living. It's been fab !! I have finally had someone else to talk to other than my fiancé. (no offence Dirk) And with the ban lifted, that also meant .... SHOPPING !!! wahooo. I grabbed my bridesmaid and we went wedding dress shopping. How easy is it?? OMG I was expecting tank loads of fuel as we drove from shop to shop trying on meringues and toilet roll holders! Then I was expecting to have to buy a ticket to Melbourne and fly across the country to hit the shops in the East...... but no... After the inevitable meringue shop (the 1st one) we drove to another one and were turned away !! Yes that's right, we were told it was by appointment only and they wouldn't let us in !! - you can only imagine how that went down with myself and Snapper !!! - so we headed into Claremont And the first store we went into, I found it. In my size. And it was perfect. I had butterflies in my tummy. We put the dress on hold and went for a quick glass of Moët. I couldn't stop thinking about it. I knew it was right. So I went back to the store and purchased. Too easy !! 

Hello Kitty Wedding Dress

Now the hunt begins for the perfect shoes and accessories. Not to mention the perfect bridesmaid dresses. With one in Perth, one in NZ and one in Dubai, it's going to be interesting on how we co-ordinate it all !!
But my biggest worry at the moment is getting the invites out. Well, that and my hair growing back in time for the wedding. 
I had my bloods done yesterday in time for my appointment with Tina today. Unfortunately when I got to the hospital, she was sick and wasn't coming back all week. But I was still seen and my results were fab. Pretty much all neutrophils, haemoglobin and platelets in normal range. So all I have to do now is have my Zometa infusion on Wednesday and catch up with Dr Brad on Friday and then that should be it. I will be released from the hospital and go back to Dr Ben !! OMG I can almost see the light at the end of the tunnel.
I will have to get back to work soon though. No pay is tough, especially when we have so much expense coming up. The worse thing is, I actually took out salary insurance to cover me for any leave that may happen. This was a couple of years ago. Unfortunately, it only kicks in after 90 days of leave. And that is after all of your sick leave and annual leave have been used up. I'm not going to need 3 months of sick leave, but will still lose approx. 6-8 weeks pay. As far as I know, there's nothing that covers that. And when I do go back to work, I won't have any leave at all. This sucks !! It's not even my fault !! Ive had to sacrifice pay and leave to get better from this bastard disease. When it comes to getting married and seeing my family at Christmas, I'll be lucky to have enough leave to take any time off. Not to mention a honeymoon. But on the bright side.... at least I'm getting better. 
Well, as usual it's the middle of the night. I've not written about anything that I had in my mind. Like I said, it's been a good week. We've also had the fantastic news of two engagements this week. So wedding bells are ringing everywhere. It's great. Massive congrats to our special friends on their engagement, I can't wait for the celebrations.....

Just a little something for the pain ..... Hospital food getting you down? ..... Honey now I'm not one to complain ....... But this hangin’ around ...... Is wearing me out .....

My New View
I can even see MICROMINE !!

This is why I hate iPad for blogging !! I just wrote a complete blog entry and pressed save and it all disappeared !!! AAARRRGGGHHHH
I will try again.... At least I'm in a position where I have all the time in the world to write !! Still frustrating though... especially on the iPad !! Which is why I am now using a laptop with a proper keyboard :-)
I can't remember what I blogged before so will have to try again - it is now 3 hours since I lost the last blog so I think this one will be completely different. The only thing I did, was make some quick notes on what I'd blogged about, so the subjects will be the same, just different !!
These are my notes.... I'll try and talk you through them.....

• View to work
• Eyesight
• Needles
• Plastic food
• Tami flu
• Visitors
• Neutrophils 2.44
• C Reactive Protein 26 was 10 !!

Anyway... to get you up to speed.... Monday I had my bloods done with Tina (my primary Nurse Practitioner in Haematology Care Centre HCC) All was going really well and she was extremely pleased with everything. Neutrophils were now 2.44 and my C Reactive Protein (which shows if you have an infection or not was at 10 - it was at 84 last time I was admitted to hospital and <5 is normal) I mentioned I'd had a bit of a cold / sore throat but that is seemed to be subsiding and that I was feeling better. She did a few tests to see if I had a fungal infection or anything else that could be easily detected and we left happy. Dirk was free to go back to work for a few hours and I was happy to hit the couch and relax with the pups. After a couple of hours I started to feel a bit chilly so cranked up the heater. I must have had it pretty high as the pups slunk downstairs and lay in the cooler climate of the hallway !! Me however... I was still freezing. I grabbed a blanket, put the heater up to 27C and tried to get warm. By 4pm I was shivering and my temperature was 39C.... Dirk got home and we decided it was time to head to Emergency. We had to wait around 40 minutes to get through Triage.... no "Get Through Quick Pass" this time. It was in line with all the other sick people.... like the guy in front of us that had a stiff neck, or the girl that had a sore tummy. At least when I got to the front of the queue, they whisked me off to a secluded room so I didn't catch a sore neck or tummy !!!! 

New Hospital - PMH

I was seen by the same HCC oncall Dr as before and she remembered me. This was a bonus as I didn't have to go through everything all over again. I was taken to the Emergency ward and X-Rayed. Then they attempted to put a cannula in.... this didn't go too well. I had a student practicing on me. Normally this wouldn't bother me at all, but I wasn't feeling the best and after two blown veins I burst int tears and he decided to get his boss / Dr.  The 3rd attempt was fine. Then they wanted blood too - but not from the cannula.... that was for anti-biotics in. So the came to take blood. It now became apparent that my veins were beginning to collapse at the 1st sign of a needle. Apparently this is common with chemo. Not permanent. I also had to do a pee test. My temp spiked again at around 10:30pm so I was given seven blankets and two panadol and Tami Flu anti-biotics. We decided that Dirk should go home at around midnight as all we were doing was waiting for a room to free up. After he left I was taken to the Emergency Obs ward and at around 2am I was admitted. Not to the haematolgy specialist ward I was in before, but apparently the next best one. And at least I got my own room. Since then, no-one has been allowed in without a mask and gloves on. 

Tuesday (yesterday) was pretty much the same... started the day off with spike temperature and swapping between shivers / lots of blankets / panadol / sweats - Every 12 hours intravenous anti-biotics, more bloods - I've had 9 blood tests in 24 hours. But by 8pm last night, I started to feel better. 

Today I had my last lot of panadol at 7am and since then have not had to have any. I'm still not allowed to go home (booo) they have to wait for my blood cultures to come back which take minimum of 48 hours !! 

Another View - Looking back towards home

But my nurse (Tina) came up from HCC to visit today, we had a good chat, and she made me feel better. Dirk has been in morning and night. And today I've been able to pick up my kindle and read - although the geekster's I got two months ago may need to be updated again very soon. My eyesight is deteriorating fast !! I'm hoping it's a temporary situation from the chemo, but I'm not sure. I'm still seeing blurry letters when I read and have to have my font on large !! WTF !!

So that's pretty much where I'm at to date. It's Wednesday evening now. Dirk has bought tea in (YAY!!) We're having Vodka Chicken Penne (thanks Jo) because the hospital food is unbearable. Soooo bad. Worse than school dinner!! - yes that bad - although if anyone is looking for a way to lose weigh fast - hospital is the answer !! 

Hopefully I'll be home tomorrow and maybe over the weekend will be able to have visitors too. I'm clear of being neutropenic now, I just have to be cautious. Which I will be. Anything to keep me out of hospital......

Every time I think of you .....I always catch my breath ...... And I'm still standing here and you're miles away ...... And I'm wondering why you left

I miss my mum every single day.... I have so many "mum moments" (where something that reminds me of mum takes me by surprise and I start to cry) My sister being here has been amazing. We've had LOADS of mum moments together. Usually we end up laughing at each other crying !!

Me & Sis on the way home from hospital

But I must say, I'm really going to miss my sis. She has to be one of the most amazing people in this world. Just gorgeous. I'm going to miss her just being here. While I've been sick, she's been fantastic. Doing everything, washing, cleaning, waiting on me, rubbing my neck when I had a headache, shopping but most of all I've loved her just being with me. Just sitting.
And now she has to leave.... I don't know why us Austin's decided to spread ourselves across the globe so no matter what, there is always a sad goodbye to have to have !!! BUT, she'll be back for the wedding & our family Xmas in Perth..... so excited about that. And if either of us win lotto, we're going to book for her to come over in October so we can organise the wedding more. I'm crying thinking about her leaving later this evening ;-( At least we're both lucky enough to have close girlfriends that are like sister's to us. 

South Perth Birds

This week has been a mixture of good and bad - health wise - I was released on Tuesday from hospital. My bloods were good enough for them to beam big smiles at me, tell me I was doing fantastically well and say I could go home. My neutrophils went from 0 on Sunday to 0.55 on Monday to 1.66 on Tuesday !! Wahoo - when they are over 1.0 they let you go home...... It took all of one hour to have my CVC removed, and get the heck out of hospital. 
Wednesday was a great day.... We went to hospital for bloods and a check-up. All was good and they were again very happy with my progress. This put me on a high for the rest of the day. We got home and Jo & I had a lazy morning, then cleaned out one of my closets and Jo baked (always fabulous) I was sneezing a lot of Wednesday, and the result was a head cold which crept into my being by Thursday - pah ! Thursday morning I was full of it (head cold that is) and with the head cold came a tickly cough. One of those pathetic annoying ones - they sound like you're putting it on, and have nothing happening on your chest !! yep one of those..... So I've been taking it pretty easy since then.

Wedding Venue !!
An old cart - lol

Jo & I did manage to go for a drive out to the wedding venue (yay) I really wanted to show her so when we talk about it she can picture it and make suggestions. We've also been trawling wedding pictures for ideas of wedding dresses etc. But so far I am still at a loss. I'm thinking in late September, before I go back to work, I will ask any girlfriends if they want to come across to Melbourne with me and we can go wedding dress shopping..... sounds like a GREAT idea to me. But please keep it to yourself, as I haven't told Dirk yet of this fab idea !!!

Oscar - Noice

So this is it up to date again. I have another check-up appointment with Tina my nurse on Monday. Hopefully, I will have knocked the cold on the head by then. And then I catch up with Dr Brad on Friday. Aside from the cold, I'm actually feeling great. Better every day. So can't wait to get rid of it and start enjoying the recovery a bit more.....
My sis told me yesterday it's only 20 weeks until the wedding..... another thing that takes my breath away !!! haha. Oh well.... I'm sure it will all come together.

......Number one is to find some friends to say "You're doing well..." .....After all this time you boys look just the same." .....Number two is the happy hour at one of two hotels, ....... And settle in to play "Do you remember so and so?".

D+8 - D+12 (Friday to Tuesday).....

Well I jinxed it in my previous entry.... as I probably should have guessed. Friday morning I trundled off to my appointment with Tina and was told I was neutropenic. (Neutrophils at "0") I didn't feel too bad. I was given fluids again and had my CVC dressing changed. We made a bet that by Saturday evening, I would be in hospital as my "C-Reactive Protein" results were at 44. Which meant I had an infection brewing. We went home and Dirk went off to work for a couple of hours. I crashed on the couch and fell asleep for a few hours. From around 3:30pm my temp was up over 37C and didn't look like coming back down again. The heater was pumping but I wasn't hot..... it was time to go into the ER !!
I'd been given a "ER Free Pass" which meant I didn't have to queue, and I would be treated as a VIP. It worked a treat, and as I passed a woman screaming because she wasn't allowed to have a smoke in the ward, I was given a bed away from everyone else and had a nurse assigned to me. It was just like the old days walking to the front of a queue at a club and walking straight in and up to the bar !!!

Daily View

The staff (as always) were amazing. I wasn't left waiting for anyone. Wasn't left wondering what was happening and felt totally looked after & informed. I had a thorough work-up done and X-Rays taken. Then they fought to have me admitted to a private room in the Haematology ward. At first I was going somewhere different, but they managed to turf someone out so I could get to where I would get the better care for my condition - as I said before.... they were amazing. After arriving at around 5pm ish, I was in my room by 8:30 ish. I was hooked up to a drip with antibiotics and fluids. Dirk & my sis left and I eventually fell asleep.
Saturday (D+9) was my worst day.... I had a temp all day, spiking up around 38C - 39C most of the day and I was in a state. Shivering, diarrhoea, no energy, headaches, stomach ache.... awful. The whole day was just a blur (bluurrrgghhh) Saturday night I slept a little better - even with the seven extra blankets I had on me - and Sunday I started to lift a little. Dirk & Jo came in every day and sat with me. Even if I wasn't talking much, they sat and were just there. I have cravings for either a drink or food which last only once, then the thought of eating or drinking it again, makes me nauseous. So Jo & Dirk have been running backwards and forwards trying to manage my cravings. The hospital food, unfortunately, lived up to expectations and was absolute shite. I'm hoping I will have been able to lose those extra few kilo's as I haven't been able to stomach too much !! Rubber Omelettes, brussel sprouts (boiled to within an inch of their little cabbagey lives), lentil soup (no seasoning as I'm not allowed) ..... it's been tough !! Being neutropenic means you have to follow a Neutropenic Diet so there are certain things I'm not supposed to have - like salad.
Anyway..... like I said, Sunday was better, Monday (D+11) was better again. I also started to see my Neutrophils go up on Monday - they were at 0.58. This was good. It meant my white blood cells were re-generating. Which is basically your immune system. When it gets over 1.0 I was looking at going home.
And so after spending the day yesterday with my sis, playing scrabble, having "mum moments" watching TV and drinking cups of tea, I spent another slightly restless night ( I've discovered I don't sleep well in hospitals) in hospital. It's fine of you are a newborn and need to wake up every 4-5 hours but when you're 42 and don't, it's just not the same !! Ob's and blood tests every 4 hours.... pills, fluids, beeping machines etc etc..... yawn !!

My CVC that came out of my neck !!

This morning, I woke to the great news that my neutrophils were at 1.66. One point bloody six six !!! yes you read it..... AWESOME !!! This was good news and my nurse got me all excited telling me I would probably be able to go home...... I was not getting my hopes up this fast !! It was only 8:30am !! The Haematology Dr's were doing rounds today and I was to be flagged for inspection. I told my nurse to tell them I wanted out. And she did. At 11:15am in walked Dr Brad !! I didn't realise HE was coming in and it was good to see him. He was VERY happy with me and said "Yep, you can get out of here" OMG.... I cannot describe the joy !! I did the BB dance in my head .... you know the one.....
And so.... I am home. With my family and it feels great. I was able to eat a nice tea - thanks Jo - watch Big Brother - thanks Dirk and I am now about to sleep in my own bed (with ironed, yes ironed "fresh sheets, fresh sheets" - thanks Jo)

It doesn't get any better than this.......

Closer than my closest friend.... To celebrate the good times ......To help me through the hard times ......To bring me down to earth ........Remind me what's important.......

The past 2 days have been better. After my trip in to hospital on Wednesday I was given fluids. My results showed I was almost neutropenic. Which is what we are pretty much expecting / waiting for. After the fluids, its amazing how much better I felt. Even though I'd been drinking 2L water every day, it appeared I was on my way to dehydration.
My sister arrived on Wednesday evening from NZ. And all of the sudden I was feeling a whole lot better.
We've had tears, laughter and lots of "mum-moments" as I've come to call them..... Those unexpected moments when you remember something "Gerry would have said /done" and you burst into tears when you realize she's not here.....
Anyway.... It's been fab, and an absolute morale lifter having my blister here.
We're off to the hospital again now. Had a small scare last night when my temp spiked to 37.6C ... But we realized that having the electric blanket on boost before slipping into "fresh sheets" had an impact on the results !!! After I switched it down to 1 ... Temp dropped to relatively normal......
I'll be asking for more fluids again. It's so much easier than having to drink it yourself !!! And hopefully I'll be sent home for the weekend...... But we'll have to see what Tina says......
On another note ..... I'm nearly at my "target weight" from my operation last year !!! Not something I'm even thinking about, but noticed when I jumped on the scales this morning..... Heh heh..... Not all bad see?
Xxx
Quick update .... In hospital now.
Temp is slightly up 37.5C bit we're going to see what it is after fluids. Blood pressure was low too.....
Waiting for bloods to come back.
Tina says if I have to be admitted, I'll be in for about 4 days..... They all (the nurses) place bets on when you get admitted !! Lol I want in on it too !!

.......Love is the answer....At least for most of the questions in my heart..... Like why are we here? And where do we go? And how come it's so hard? ...... It's not always easy and Sometimes life can be deceiving....... I'll tell you one thing....... it's always better when we're together.....

Looking forward to seeing my sis on Wednesday....

I'm in the middle of a Jack Johnson-a-thon .... and so I guess, feeling pretty alright so far too.

It's Sunday.... Thursday was implant day and my days have been relatively good. If I jinx myself by writing the following then <insert "F-style" curse word here>

Anyway here goes.... so far, no temperature, the anti-nausea drugs are keeping things at bay, no diarrhoea... the worst so far is the irritating Dracula's neck jewellery (Thanks Nigel - liked that one !!). But even that is beginning to settle and not be as annoying.

OK Coldplay-a-thon now..... JJ was getting a little melancholy for me......

I've been very careful so far. Bucket loads of anti-bacterial hand wash, lots of water, hydrating fluids and no contact with anyone or thing. Although I have managed a couple of trips to the park with the pups. I've also been sleeping well(ish). The olympics have helped too. Live streaming on the iPad on the middle of he night is great. I'm back on the Dexamethasone so that may explain some slight insomnia. 

I'm now on a neutropenic diet too. And it looks like I'll have to stay on this for the unforeseeable future. As I now have no immunity I won't be able to combat food bacteria. I'll have to start from scratch with my body. One of my biggest disappointments would have to be that we will not be able to visit "Sizzler" for the next year !! Oh woe is me..... how will I survive ?? !! No salad bar or all you can eat soft-serve is allowed to pass my lips !!! Looks like it will just have to be fine dining establishments and home cooked delicacies. 

I have a bowl of drugs I have to take every morning..... 

• Dexamethasone - Anti-sickness 2-3 days after chemo (all good now)
• Metroclopramide - Anti-sickness 20mg 2 tabs up to 4 times per day
• Pantoprazole - Antacid (and for nausea) 40mg 1 tab per day
• Fluconazole - Anti-fungal 200mg 1 tab per day (for the foreseeable future)
• Valaciclovir - Anti-viral 500mg 1 tab per day (for 3 months post transplant)
• Filgrastim - 300mcg Injections daily in evening D+5 onwards
• Gastrostop - 2mg Once it starts.... max 8 per day !! eeuww

I have my first check up appointment on Monday morning. I'm hoping Tina (my Nurse) will be very happy with me. 

My beautiful niece - who's birthday it was yesterday

And so back to the couch and the relaxing.... my Blue boys are about to start. I haven't picked them to win and after the WCE performance yesterday I'm hopping for some winning vibes in the house. I must also say that as my first year as an Aussie I'm a little disappointed at the performance of the number of Olympic Gold's for Australia!!! Go Team GB !!! Just saying......

Oh yes one last thing.... we've booked our wedding venue. Looking forward to Jan wedding......

I'm working on a dream ......Though trouble can feel like it's here to stay .......I'm working on a dream ....Well our love will chase trouble away.....

I really don't know how I would get through all this without Dirk. And I'm not sure I can put into words how much I love him and appreciate how he has been there for me. I know if the tables were turned I'd do the same for him (I'm not sure I'd be as good as he is though) ..... but it's not the other way around. And at the end of the day he is putting up with everything.... and not complaining, and doing everything & anything for me. And his support has been relentless since January. For any carer out there... I cannot begin to think how hard it is for you. Thank you seems so little for what you do...... BIG love to you all. But ALL my love to MY carer. (he won't like this mushy stuff, but it has to be said) I love you Dirk......

I finished work on Friday..... I won't go into it too much... needless to say, I may have overdone the "farewell vino's". Maybe not the best idea, but done now. Apologies have to go out to my work friends that had to see me that way !! (hopefully by the time I get back to work it'll be forgotten !! ) awkward !! But I had fun... so that's what's important right? 

Yesterday was D-3 (the format my hospital use for transplant day calculations) Transplant day is D 0 then D+1, D+2 etc etc. until you are discharged. It was an easy start to the week with just the blood test. I managed to get sorted after that, with shopping, washing and last minute house stuff. Knowing that I probably won't have the energy or strength to do much. I wanted to get my sister's room ready and looking nice. I also needed to buy a heater for her room so she's not too cold. I'm really looking forward to seeing her, and I know it will also help Dirk. Just having the extra support here. He will be able to go out and even go back to work without having to worry about leaving me alone. So got that sorted, and then we went out for a last "drug free" dinner.

Today (Tuesday) was CVC (Central Venus Catheter) and Melphalan (Chemo) day. I was a little nervous about today. I guess knowing that someone was going to cut into my jugular and then pour in a drug that will make me feel like shite will do that to you !! So I put on my colourful jumper and even made up my face to help make me feel happy and not sick looking (it may sound vain, but it makes me feel happier to look healthy) and we drove into hospital. As always, the nurses were great. I was taken to theatre "recovery" for the CVC to be fitted. It's done under local anaesthetic - not the most pleasant experience - I felt most of it. The needles going in to such a soft area was probably the worst feeling. Then all I could feel was the pressure of the wires and needles. But it was bare-able. Afterwards an X-ray is done to ensure the CVC is situated correctly, then I was wheeled back down to the Haematology Care Centre (HCC) where everything is done for Haemo patients. I'm calling the CVC my new jewellery, as it dangles around my neck, and I'll be wearing it for the next couple of weeks until I'm discharged.

Dirk was waiting for me with a muffin, as I hadn't eaten anything yet. I managed to scoff a little of it before I was prepped for the infusion. To stop the mouth ulcers and probability of Mucositis they give you ice to suck before, during and afterwards. My nurses told me to continue for at least a couple of hours afterwards too. If there's one thing I've learned so far, it's to listen to the nurses and Dr. They go through this everyday, with a variety of patients and situations. They Know !! So I have listened to what they've told me so far and followed it to the hilt. 

The day was relatively painless and we returned home around 2pm. Mav had decided to eat his bed !! lol... we had left both dogs inside as it was raining badly and we didn't want to get home to wet dogs !! We knew they'd be a surprise at home, we just weren't sure what it was going to be.

I continued to eat ice until just before 4pm. Then I called dad to let him know about my day before I fell asleep until 7:30pm. We had some tea and watched some TV and now I'm in bed... they also put me back on the dexamethasone (hence being awake still at 12:45am !!) but I'm also paranoid about how I feel... silly I know, but I'm also watching the Olympics so it's not all bad !!

Tomorrow is a "rest day" and I intend to rest before the implant on Thursday. Drink lots of water and stay away from germs !! Fingers crossed all will be un-eventful.....

Once again, thanks for all the messages, posts and emails. I know I may not have responded to all of you, but thank you all the same. I've had some great emails from people I haven't spoken to for a while, it's great to hear from them. Also from people I don't even know. I'm sorry if I haven't responded yet... I still intend to. But I hope this blog helps in some way to anyone that may not have the support I have, or is just interested in the whole process....

Anyway, as usual this is a late night entry, which means, when I read it again in the morning I find spelling mistakes and incorrect grammar (which I hate) and sometimes cringe at what I've written. But I guess that what happens when you share your personal shit with the world !!

Night, Night, God Bless xxxx 

The title is dedicated to Dirk - "Working on a Dream" by Bruce Springsteen.

You walked into the party like you were walking onto a yacht ...... Your hat strategically dipped below one eye ......... Your scarf it was apricot .....

..... I tried to ignore the fact that it was coming out.... I wore one of my hats to work ..... I even went across the road to the pharmacy and purchased some new head gear......but by the time I got home from work I was covered in hair..... I felt like I'd been dipped into a hairdresser's bin !! I had fine little hairs all over my face and up my nose ..... and so, as soon as Dirk got home.... the clippers came out and off it went ..... and I laughed. 

And when I looked in the mirror .... I cried..... The fun was over very quickly. It was definitely real now. There was no denying I had cancer. It's not like I was about to make a movie like G.I. Jane !! (I wish) I had a bald scone, and it wasn't going to change anytime soon.

I got Dirk to take some pics (we even recorded the head shaving for posterity!!) he was desperately trying to make me feel ok. Eventually it worked and he had me laughing.

The pets didn't notice at all.... I was still mum to them and all they wanted was attention and cuddles.... nothing was any different in their eyes - you've got to love that about cats and dogs, their love is unconditional and it's totally irrelevant how you look or how much you yell at them for eating your best plant while you're at work. You yell at them and tell them NO!! and they come and put their head on your lap and love you even more than before..... 

One thing that is annoying about your hair falling out is that you don't have a choice about the day..... mine fell out on the coldest night of the year so far !!! It was only bloody 2C Wednesday night - and for those of you saying "pah .... meh .....that's warm compared to blah... blah... blah...." It's bloody cold in Perth when your house is rigged up with air-conditioners and not central heating !!

Thursday morning came and once again, the shock of what I looked like as soon as I looked into the mirror ...... more tears - but there is a bright side...... the shower feels great on a bald scone and  my "getting ready time" has been cut by half !! I was ready in about 15 minutes !! fab-ness !! Hat went on and off I went. 

And here's the amazing bit.... when I walked into work, one of the guys on my team had shaved his head too.... he didn't want me to be the only one walking around the office with a shaved head !! Some people are so amazing. (Although I hated to point out that there is also a bald-headed guy in our team that we've just hired !! oops !!) 

I haven't quite got the confidence yet to walk around without a hat. I'm happy to take it off and show people, but not yet at the point of leaving it off. 

The comments from my friends and family have been the best though. By over-sharing on Facebook, I've been inundated with gorgeous comments. This really helped me over the past two days. 

We shaved it to a #1 all over, but even the tiny short hairs are still falling out. I imagine it'll be smooth all over before it starts to grow back. But hopefully by then I won't be bothered one little bit about it.

We're off wig shopping today. The hospitals in WA give a wig voucher to cancer patients. So I'm off to try a couple. If I think I'll wear one, I'll get one. If not, I'll return my voucher and not bother. I'll just have to see how it looks and if I think it'll make me feel better or not.

Luckily though.... 23C today and sunny !! 24C tomorrow too.... got to love Perth in winter !!

Tell me how I'm supposed to breathe with no 'hair' .... Can't live, can't breathe with no 'hair' ....

It's falling out !!! (My hair) Today.... as in, right now !! Yesterday it wasn't... today it is. In clumps too.
I was prepared for it..... just not today. I knew it was going to happen. I just thought it would be after the next lot of chemo... and I wouldn't be at work ! I'm not really quite ready today... I was preparing for 2 weeks time. I haven't had chance to practice my bald look yet. Hopefully it won't take much practice, especially as I only have overnight now to get it down pat !! eBay might take a hammering tonight.... get your hats online eBay sellers.... I'm coming !!! Hat donations also welcome peeps....... Oh well..... here goes I suppose. Now I must go out and get that Hermes scarf !! ..... and the clippers - gulp.

Piet Mondrian - Art Gallery of WA

Anyway... I am drug freeeeeeeeeee!! I can't believe how different I feel compared to the past 6 months. I'd really forgotten how it felt. In fact it's been nine months since I felt like this... in fact, I've not been this weight and felt like this. Nine months ago I was "post surgery" and still losing weight. So to be able to enjoy the way I feel at the moment is quite a nice feeling. I'm still tired. I've been sleeping a lot. But during the day I feel good. I went back to work yesterday for just two weeks. This is how long I have until the Stem Cell implant happens. Yesterday Dirk & I went to hospital to visit my nurse practitioner - Tina - She went over the whole process of phase two. And I have to say, she is pretty amazing. We also bumped into my Dr - Dr Brad. He was saying how well my collection went. To understand how the collection calculations work I have copied the following:

"How many stem cells do I need? Over the years, a number of studies have been completed to determine the number of stem cells you need to safely undergo high-dose therapy. The number of stem cells is quantified by a special laboratory technique called “CD34+ cell analysis by flow cytometry.” A small sample of the stem cell collection is tested for the number of CD34+ cells in the product. We know that a minimum number of stem cells to safely complete a transplant is 2 million CD34+ cells per kilogram of body weight. The number of CD34+ cells is checked in each daily collection and the number tallied. The stem cell collection process continues daily until the planned number of stem cells is collected – usually 1–4 days. Some transplant centres check the number of CD34+ cells BEFORE starting leukapheresis to make certain there will be a good collection that day. Most transplant physicians collect enough stem cells for two transplants (over 4 million D34+ cells per kilogram body weight). "

Giorgio de Chirico
Art Gallery of WA

The reason Dr Brad and Tina were so happy was that my "CD34 - Absolute Count" was 97.3 from just one day !! Yay me !! (They needed the count to be 4 Million CD34+ cells per kilogram of body weight.... mine was 9.7 Million - I think!!)
The next hour was spent talking to Tina bout the next stage. One comment that kept being repeated was " I'm not going to lie to you.... it's not going to be easy"
Diarrhoea, tiredness, sickness, mouth ulcers, indigestion, fever, bruise easily, hair loss..... these were the most common side effects. My body must have heard this and saved me the worry of the "hair loss" by getting that one over with nice and early !! Thanks body !!
So anyway... I was also thinking about my blog and once I start this next stage. I will try my utmost to blog what's happening, but the posts may be very short and also randomly posted  as I really do not know how I am going to be. Like I said though, I will try my best to share what's going on.

Black cockatoo in our tree

I have no idea how I'm going to manage a photo a day too. I mean, how different does a ceiling look day after day !! Another thing I will have to do my best with.
One of the most exciting things that has happened this week though..... and it negates all the above feelings and makes me happy...... is that my dad has booked his flights and will be coming to visit. BIG YAY !!! Soooo excited and cannot WAIT to hug him. If there is one thing that is going to get me through all of this, it's the thought of seeing all my family soon. If all goes according to plan, we may have a wedding to plan for January. This is going to keep me very busy and just a tad excited. But before I jumped too far ahead, I will get through this so I can get excited about 2013. This is my plan.......

Wahol

Note: I caught up with a very dear friend last week and we decided to go to the Art Gallery of WA.  They had an exhibition of Picasso to Warhol. I had a great time taking snaps of the art. Afterwards we came home and hit the vino..... I believe I went to bed around 2:30am.... to be honest with you, I can't remember....

Is it getting better? ..... Or do you feel the same? ..... Will it make it easier on you now? ..... You got someone to blame .....

So....... the chemo and injections? hmmmm...... what to say !! It all started off ok. And to be honest has been alright...ish. 

Last Friday was the chemo day - I've already covered all that malarky. No need to waste keystrokes repeating all of it again. Tuesday I started the injections of 'Nivestim' - these are the growth hormones that I self inject morning and night to promote the stem cell production - prior to the harvesting. Actually when I said "I" started the injections.... what I meant to say was that Dirk started stabbing me !! much (I'm sure) to his delight. There were also all of the other drugs around last Friday's chemo that seem to have gone ok. I haven't had too much heartburn and I think my uterus is ok - how do you tell?

Anyway, back to the injections..... all good until around Wednesday night. I started with a headache when I went to bed. And by the morning had a really bad one. I'd slept really heavily Tuesday night and felt really groggy all day Wednesday. Thursday morning felt achey in my body all day and after Thursday evening's injection only slept for 3 hours before lying awake for the rest of the night. The feeling is like a body slamming flu - without the fever or chills bit. It's between a 'flu like feeling' and an 'aching from over exercising' feeling (Yes I do know what that feels like !!) ..... and now.... Friday evening ...... I just feel fragile. It's harder to walk as my spine hurts. All my larger limbs ache ..... but most of all my ribs and spine. Paracetamol is my new best friend. 

You know what I like about writing a blog..... you can whinge about every little thing. I can put it out there, share it with the world without actually saying a word. I think I should change my title to "vixenaus - my multiple myeloma whinge-fest" At least that way I'm not false advertising either. It's clear that when you see the title of my blog.... you are going to have to read about me moaning and whinging about shit. No surprises. 

I was wrapping a present today for a gorgeous friend. And all of a sudden had a flash back to December last year when I helped mum wrap all of her Christmas pressies. Flood gates opened and I had a 'mum memory meltdown'. These are going to become part of life now I think. It wasn't the first one, but it was probably the most hard hitting one I've had so far. And because it took it by complete surprise. It took my breath away. I must say though, mum would have been very happy with the gift wrapping. It was very Gerry !!

I was also accused of "over-sharing" last week. Too much information being published and shared. But I've always been a big over-sharer. Always worn my heart on my sleeve and let people know exactly what mood I was in. We are living on a world of over-sharing. Even the least exciting people share their dirty laundry. I personally blame BB,  Geordie Shore, TOWIE and all of those other Dirty Laundry Airer's. (And looking forward to the return of BB too btw !!!) I can always stop my blog and close down Facebook. But my dad has just joined and I'd miss all his updates !!! And anyway..... the person that accused me of this also laughed at me when I put on a beanie to cover my awful thinning chemo hair this week. So who's side are you all on now?? ha !! 

Off for the harvesting on Monday. Only 2 days left of injections !! yay !! I'm having my hair cut tomorrow. I haven't lost it, and to the untrained eye it probably looks about the same. But it is soooo thin now and whispy. So I thought I'd just get it cropped. If I like it I'll share.... if I don't.... I'll probably still share.... seeing as I'm an "over-sharer" !!

Such is the way of the world...You can never know.... Just where to put all your faith.... And how will it grow? .....Gonna rise up ....Burning black holes in dark memories....Gonna rise up...Turning mistakes into gold...

It's been an interesting week. Trying to come to terms with mum's death. It still seems all so surreal. Things at back at home in UK are settling (I think... do they ever?) My sis is back home with her kids in NZ and I guess all we can do now is start to move on, with our beautiful memories and know that she will always be in our minds..... and not too far away from each of us. I was talking to my sis the other day and we talked about how it is going to hit us over and over again at different times. The first time dad comes out to visit ..... but mum isn't with him. The first birthday, first Christmas in fact every one of those occasions time and time again. I chatted with one of my besties last night. He was at mum's funeral so it was nice to chat about it from his point of view. One of the things he said was that it was a fantastic do. Not too maudlin and sad at all. IN fact the only person missing was mum !! haha. She would have loved it. We had a few tears and a laugh - it was good. 
I spoke to dad this week too. He seems to be going really well. My bro and sil and nephew are heading down again this weekend. They are taking nephew (aged 2) to Thomas (the Tank) World. I'm not sure who will be the most excited... dad or brother !! Dad also mentioned he had received close to £3000 in donations to mum's Bladder Cancer Foundation UK and to The Leukaemia Foundation of Australia. This is fanTASTic - thank you to everyone that has donated. I think there are also people that have donated directly online to both.
This past week I have been drug / chemo free for six whole days and for the first time in over five months had started to feel less fuzzy and foggy. Even Dirk mentioned my acerbic wit had returned. We found ourselves laughing and joking like "before". The regular banter was back on.... it was good. We also had some fantastic news that some very close friends are going to have a baby. With all the sadness that had been around, this was such great news and we were very happy for them.

Seeing as I was staring Autologous Stem Cell Replacement this week, and I also wasn't sure how it was all going to pan out, I thought it best to advise work that I may or may not be back in for a while. As I've said quite a few times, they have been absolutely amazing.... so I left work on Thursday - prior to starting treatment on Friday - complete with laptop, paperwork and lots of best wishes. We went out for dinner as my taste buds were back for the first time in ages and my iron count was lower, so what do you do? ..... go out for a steak !! We found a fab little place locally and had an amazing meal.
I think the people around me have been more nervous about the start of this stage than me. I haven't been scared or nervous at all. It may because there really isn't a great deal of information on what actually happens in the first stage..... or should I say the way it makes you feel....so by not really knowing what happens, and by feeling pretty good - albeit sad about everything that has been going on - I'm in a pretty positive stage of mind. 
Tuesday this week I had to go for a heart scan - it was a little like an MRI.... first they inject die into you and I had to sit for about 1/2 hour for it to pulsate through my veins. Then lie on a scanning machine, very still for about 20 mins and they take pictures from a noisy machine.
Back to the hospital on Thursday for a lung function test. This one took a little more effort. Lots of huffing and puffing while hooked up to a machine. If one result wasn't good enough, then I had to repeat until it was !! Some of the other test were "take the average reading of six attempts" So after an hour of that I was told I could go..... to pathology for more blood tests. Luckily I managed to beat the rush and was in and out (with another band aid on the other arm) in 20 minutes...... Luckily I made it back to work for a meeting with MD / COO with some interesting company news. It was so interesting that I had to miss a pre-booked lunch engagement with half of Perth's mining elite. Never mind I go every month so there'll be more. And I had also vowed not to drink this week - in order to cleanse my liver - so missing the lunch meant I wasn't tested with the offer of vino on tap at every table.....
So ..... Friday.... up and at it early so we could get to hospital. We made it on time and got a park outside the back door which always seems to have free parking spots.(probably because it's $2.50 an hour) but we weren't sure how long we were going to be there so we thought "what the hell". Into the Haematology Care Centre where we were welcomed, and the sat and waited for our turn. I was called a few minutes later and showed to my IV chair. My nurse remembered me from my bone marrow biopsy the previous week. She spent a few minutes letting us know what I was going to go through. 
1st - some Dexamethasone via the IV - 20 mg
2nd - and anti-nausea drug
3rd - Mesna - to protect the bladder (the chemo can cause irritation and sometimes bleeding - like cystitis)
4th - Cyclophosphamide - the chemo drug
All of the above were given over 4 1/2 hours along with approx 5 litres of fluids too.
So I was in the chair for about 4 hours. But it was comfortable as went prepared with iPad, iPhone and Dirk !! He spent most of the time entertaining the people around him and the nurses. Everyone had a "buddy" with them. It was a warm and happy environment. The nurses were caring and very informative if you had questions. It was nice.

I was sent home with two bags of drugs... a list of instructions and a hope that Dirk understood everything that was required !! I didn't feel too bad, better than I was expecting.
The growth hormone injections start on Tuesday. Twice a day for 10 days. These injections help to stimulate the production of bone marrow, to the point that it causes bone pain as it over fills the bone cavity and spills out into your blood stream. This is when stage two starts.....and I will go into more detail about this later....... 24 hours later I'm still feeling OK. I'm "just" beginning to wonder if I might take a Metoclopromide drug (for anti-sickness) as I've just had a bit of a burgh feeling as I've been writing this.....
Next week I'm working from home and going to see how I go. Then on 9th I'm back in for the harvesting part. I have a feeling (based on what the nurses said) that I'll then have a couple of weeks off before the implant happens. So I'll probably go back into work for a couple of weeks. Again... play it by ear....
Not much planned for now.... Dirk has upgraded his iPad today - Noice !!
Once again, I have to say thank you to everyone that has been sending me good wishes and messages. The past couple of weeks have been a roller coaster. I haven't responded to too many messages. But please know that I appreciate each and every message and they really help. I smile when each one comes in. So please don't stop !! xxxx Vix