...Daniel drinks his weight .....Drinks like Richard Burton ..... Dance like John Travolta ....now.

Quick update .... all good.
Had my 3 monthly check up and Zometa on Tuesday. Bloods are all normal. Nothing to concern anyone. I am the favourite poster child of Dr Ben (well I think I am) Still have to have a Zometa infusion every 3 months. The effects are hitting me today. Just a weird feeling in your bones. Nothing that can really be described. Just weird.
Other than that, loving summer, my pool, eating outside every night, warm summer days. Life is pretty good. Even the summer storms have been amazing.... better than the Australia Day fireworks in my opinion.
I've had my dad visit me for a month. I've had my besty come over for a visit from the middle east. I've done a Spanish cooking class with my other besty. We have birthdays coming up (me & the hubby) we have weddings coming up (soooo excited for both) which also means Hen's days, new frock's !! eeks! And tonight I get to dine at WA Government House with the WA Gov. General to see my MD receive an Australian award. Life is pretty damn good at the mo.....

Canada to India.....Australia to Cornwall.....Singapore to Hong Kong.....From the West to the East.....From the rich .....to the poor.....Victoria loved them all........

What do you do when you find a post that was started.... not finished.... added to and then neglected? ..... I found this entry today, I'd forgotten about it. But here it is anyway as it continues to tell the story of one moment in time - albeit almost 3 months ago now.



I've been feeling very melancholy this week. It's a little tough at work at the moment.... although I'm pretty sure I'm not alone there. It a tough market for all mining services companies .....
I had an appointment with Dr Ben. All good (as usual) .....afterwards  I went for my Zometa infusion. I thought maybe I was almost finished with these, but it appears I will continue with Zometa for quite a while (like the next year or two). Not that it is an issue for me at all. But it can mentally be difficult sometimes to sit in the chemo ward having an infusion. That constant reminder that  you're not "quite" free of it. It's a lonely place on the chemo ward. I've recently changed to a new one at a different hospital. It's very close to work so I can walk there from my office and be back at work straight afterwards. However the vibe is different at this one.  It's just a bit quieter..... and darker. I took work documents with me to pass the time. It's much easier to actually get some work done at hospital than in the office - no interruptions or phone calls !!
The other thing that affected me was the sad news of a very close friend losing her dad suddenly. I'm not going into it here as it's not my place to. But needless to say, it reminds me of how precious life it and how devastating it is when you lose a parent..... it's made me constantly think of mum. I guess when you start thinking about all the fun and frivolity of the Christmassy weeks ahead, you automatically think of family too. (well I do... I'm lucky I guess)
Which does lead me to happier moments.... like Christmas.... pressies...... mistletoe & wine.... I just LOVE Christmas. I love the decorations, the lights, the parties, the gifts, the laughter, the food. Please don't get me wrong. I know there are people less fortunate in the world. There is sickness, war, poverty and all sorts of awful happenings around our globe..... but I am an extremely lucky person and I am going to appreciate that fact by having fun and making the most of it. I am bringing back Advocaat !!!(If I can find it)
                                                 
                                                                  {insert 2 weeks later}

So that was 2 weeks ago..... I forgot to click on "publish" and there it sat, just a little lonely post.
It's been a busy couple o' weeks ! Work has remained the same..... tough. Christmas is well & truly underway. The decorations are all up, three trees and twinkling lights everywhere. We had our annual Christmas party. Entertained a few friends who ate their way through 25Kg's of Meat in Hot Roast Rolls. But some sad news..... I wasn't able to find the Advokaat !! devo.... but Christmas isn't here yet, there is still time to hunt for some.

I drink a little more than recommended....This world ain’t exactly what my heart expected....Tryna find my way someway, oh I, oh I, oh I.....

Hello, my name is Vicky and it's been 257 days since my last blog !! <inset round of applause here> 

I don't know why I stopped writing my blog. Maybe because it was a bit of a reminder of "sick times" and now I'm well.... maybe I just got lazy (more likely) or just caught up in the rat-race again.....I also think that when I first intended to write my blog, it was going to be about my journey through chemo, stem cell transplant etc. In the hope that my story might help someone that is going through things alone..... I know my journey isn't over, but I don't want to bore people. But then I guess you don't have to read if you're bored ! <yawn> Maybe I just got caught up again in the rat-race called living !! I can say though that in the past 257 days since my last blog I have been to South Africa, Thailand / Koh Samui, New Zealand, Toronto, Montreal, Vancouver and in just a few short weeks will head to Bali. So not a bad rat-race really.....

So... what now? I've decided to continue writing, if and when I feel the urge. I constantly blog in my head. Meandering thoughts about what I would write each day... but then forget when I'm near my computer to write it down. So I may do random blogs.... some short, maybe just the odd picture here and there.... or a new song I've just heard that tickles my fancy ! (Thanks CT for the title song )

The past 257 days have also bought an abundance of births and marriages amongst our friends. I am proud to be "Aunty Vix" to so many new additions. Dirk & I are more than happy to entertain and enjoy watching the new kiddlies - but no, this doesn't mean we have changed our minds. We can hand them back as soon as the A) Cry, B) Smell, C) I get Bored !! It's the perfect solution. But we still get to spoil them and get cuddles and giggles..... so blessed.

I'm still taking heaps of pic's. Not one everyday, but especially since I've been on the road so much. And I'm cooking a lot. I've noticed this seems to be one of the major hobbies that I enjoy and helps me wind down after work. We've been eating some pretty shit hot food lately (even though I say so myself !) and I have been going mad cooking curries, bread and cup-cakes. Dirk & I are still attending our cooking classes. This year, we're doing "meat" classes (sorry to all you vegetarians) The classes are pretty amazing... learning about different cuts of meat and tasting them. The class is taken by a local (very well known and popular) butcher. 

Oh and I forgot to mention... my health is still good. I've just about finished having Zometa infusions now and my blood test results have not shown anything out of normal range for the past year. (Yay)

So there it is... a boring blog about nothing..... but for those of you that take the time to read it - thank you. And I guess it's good to have nothing to write about other than travel, good health and cooking.... especially given the reason for starting it......

Somewhere in my heart there is a star that shines for you ...... Silver splits the blue ..... Love will see it through ....

Whell !! It's been sooo bloody long since my last post..... what can I say. It's been a busy time to say the least.
Happy Australia Day !!! What a year to review ....
This time a year ago, I was still in shock from being told I had cancer, about to throw a party & 2 days away from starting Chemo. On 29th Jan, my blog will be 1 !!
So what's been happening in the past 2 months ? ......not too much really !!!
I'm back at work full time, had my family over for numerous big hugs and lots of tears, met my new niece .... oh yes and I'm now a Mrs !! It's a great feeling. I married my (hash-tag) loveofmylife.
So that's about it. Short blog this month !! Hahha ... Yeah right !!
To expand, maybe just a little.....

<insert 3 week break here>

That was what I started back in Jan !! It's now 19th Feb and I am still struggling to find time to put fingers to keyboard. Life has been probably the most hectic I have ever known.... but not in a bad way, just a busy way.
My mind keeps skipping back to "this time last year". It was such a major time of my life. One of those times that I will never forget. Like the time Diana died, or 9/11 !! For me it was "that" significant. And I can't believe where I am now..... it's been one hell of a ride.
There have been some amazing times in the past 3 months. A lot of healing, a lot of tears, a lot of happiness and a hell of a lot of wine too !! Needless to say my family have been here !!! Not to mention some fabulous Perth summer weather and even more fabulous friends too. It really has been a whirlwind of emotions.

To review some of the happier times... I have to mention "I'M NOW MARRIED" yes.... me..... the spinster that was, is officially off the market !! Oh but you already knew that from my post above written last month !!
It was truly one of the best days of my life. Every time I think back I smile. I wish I could go back and do it all again over and over. Apart from the fact that I was an absolute Bridezilla. OMG .... looking back I thought I was handling things so amazingly well. I can assure you.... I wasn't !! Just ask my (nearly wasn't) husband. I can't believe what a wedding does to you ! It's actually very scary. There were moments when Dirk said he really wasn't sure that it was worth it. But in my world...in my little bald headed, "Miss Organised", "This is a Breeze" little world.... I actually thought I was coping like an angel sent down from heaven. Little did I know.... I wasn't !!! Take advice all you future brides out there..... No matter how great you think you are coping..... you're not !! BUT... having said that, at the end of the day, I wouldn't change a thing (except that one thing that I'm not going to mention in this blog ;-)

One of the most amazing things that I LOVED, was having my family and friends here. Words cannot describe how amazing it was to see people that I don't get to see all that often. My dad was here for a full 2 months. It was absolutely fanTASTic. I wasn't sure how it was all going to be, but it was awesome. In some ways, it was really amazing to get to know my dad for just him. I'm not saying I didn't know him, but I have never had the chance to spend time with my dad, just by himself. I loved it. He is an amazing person with such strength and character.....and dad if you are reading this... I love you more than anything.
Friends also need to be mentioned. The past year has really shown the many, many people in my life that I have met. I am one really lucky girl.
So ... in terms of my health.... what else? Well, I've had to have new geekster's (glasses). After a year of chemo, my eyesight deteriorated pretty fast. I'm putting it down to chemo and not old age !!
On a positive note, I have LOADS of energy, so have started walking daily. I'm really enjoying it (well as much as anyone can "really" enjoy exercise) My "husband" wakes me up at 6ish and we go for a 2-3km walk with the dogs. I'm loving the early morning coolness and once I get up and get going, I do feel better.
Work is beginning to take over pretty much all thoughts and waking moments. It is all consuming, but at the same time, I'm not hating it. At the moment, I'm learning the new aspects of my role. There is a lot of pressure and I'm having to find the best approaches via trial and error (more error's are being tested at the mo) but I'm still enjoying it.
The hardest thing of the past few weeks has been the most excruciating "Tennis Elbow"  I'm having physio for it and it's helping a little but it's now been a good 4-5 weeks. I am thinking that I need to see a doctor though.....
One thing about being diagnosed with a form of cancer, is that nothing will ever be the same again when it comes to ailments. If there is a pain, I instantly assume it could be connected.
And that is where I'm at now.... after everything had settled down and I was in remission (7th Sept 2012 - yay) I started to get very bad tingling in my lower legs and feet. It was so bad that I would wake up at night because the sheets caught my feet and pain would shoot through my lower legs. Eventually I began to lose feeling and my feet now have about 30-40% numbness on the upper part of my foot (both sides) This happened around Oct /Nov last year. It has now begun in my hands.... I have started to get some pretty severe nerve pains in my hands. At first I thought it was due to the Tennis Elbow, but I'm beginning to think they may actually be separate issues. Who knows? So I'm going to make an appointment with my GP. I don't have another appointment with Dr Ben until April. I guess if my GP wants me to see him sooner, he will let me know.
I've been seeing a physio for a few weeks and she has "strongly" advised I book in..... so I will.

So....., in order to try and get this published and "out there" without another 2 month break, I'm going to sign off. People have been extremely gracious, asking me to continue my blog. Thank you. I must admit, I have actually missed it. Hopefully, I can get back into the swing of things and post a little more often again. It is very cathartic.

(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 !!!

From the highest mountain of valley low ..... We'll join together with hearts of gold ..... Now the children of the world can see ..... This a better place for us to be .....

It's getting longer between blogs. I feel like I don't have as much to talk about now I'm in remission. Until today... but before I get to today I'll step back in time, and fill you in on what's been happening.   We had our mini break to Margaret River last week and it was amaze balls !! LOVED it.   I love Marg's and can't get enough of those wineries either !! It was good for Dirk & I to get away, just the two of us. The past 12 months have taken their toll on us. Nothing can prepare you for the stress of coping with cancer in the family. Especially with everything that happened with mum and then me. We were all prepared for me recovering from bariatric sleeve surgery and getting a new lease on life. loosing the weight of a backstreet boy. We were expecting mum to get better, beat her cancer and then come out to visit us in our new house. (My first ever mortgage at the age of 41 !! - so grown up !!) Put the Gerry seal of approval all over it (and sort out every cupboard at the same time) I also had a new job, I loved it. I could continue travel to places I'd never been to and actually enjoy it too. At the same time, gaining more and more from my work, and hopefully getting better at the job too. But I guess life throws these curve balls at you and it doesn't always turn out quite as you expect. Nothing quite happened as we had planned..... But I digress..... what I was getting at was that Margaret River was a 'get-away-from-life' opportunity. When we arrived at the "retreat" there was no television, no radio, no phones and no wifi !! OMFG how were we going to cope??? BUT.... there was a  secluded cabin in bushland. Overlooking a lake. Birds and wildlife. A log fire. Petals on the bedspread. A bath made for two (ok too much information) It was idyllic. And just what we needed. Another three weeks in the retreat and we may have started to feel back to normal !!! 

We stopped at Bunbury on the way home to watch the Grand Final with some good friends (thanks Shopper & Bill) It was the perfect end to our break. No stress and a good laughs. Not to mention party pies, sausage rolls, dim sum & prawn toast.... mmm. The perfect accompaniment to footy. And as soon as we got home and picked up the pups from their first ever "kennel" experience, we settled back into home life,

Does anyone watch the show 'The Big C' ? Laura Linney and Oliver Pratt? I've been watching it for the past few weeks. It's about a woman who finds out she has Melanoma - stage 4 - and the affects it has on her (and her family) It's a bit of a black comedy...... I like it. A little addicted at the moment. And It's scary how much you can connect/relate to some of the scenario's.

Another digression !!! .... so we had the "mini-break" and then the long weekend. Sunday, we decided to paint our bedroom. For years I have wanted a "duck-egg blue" room. So we went to Bunnings and picked out the paint (or rather Dirk allowed me to select the colour I wanted) And Sunday, we got up and started painting....... But instead of "duck-egg blue" the colour appears to be "Tiffany & Co blue" !!!  Still nice.... but not exactly what I had planned.......

And then back to reality. Last week I had been for blood tests as I was having the most tremendous aches and pains in my joints. So much so, that they were waking me up in the middle of the night. I happened to mention it to my nurse so they sent me for blood tests to rule out Ross River Virus, Lupus, Osteo-related issues, Rheumatism, whinging etc etc.... Turns out it was just whinging !!! Nothing else. Which I guess is a good thing. So panadol and nurofen were prescribed. It seems to be a little better..... but not much !! It may be the extra painting etc that I have been doing..... but I'm not sure.

Today was BMA day !! (Bone Marrow Aspiration) This one was supposed to be a good one though as Dr Brad said he was going to perform the biopsy to ensure a good result. Apparently the last sample they got wasn't the best so he wanted to make sure this time it was a good one. We arrived on time and he was ready for us. After asking if I wanted to be sedated and then telling me I didn't (!!) we got straight into it. Anaesthetic into the area then hammering into the bone to be able to take a core sample out. Not the most pleasant of experiences to ever go through. But Dr Brad had obviously done this a thousand times as he got it over and done with pretty quickly and tried to talk his way out of any pain I may have been experiencing.  I have to wait two weeks for the results. We are hoping for zero cancer cells in the bone marrow which will confirm successful stem cell replacement and remission. After that I'll continue with Zometa infusions and probably 3 monthly blood tests indefinitely with Dr Ben.

We left the hospital with a small bandage covering the spot that he hacked into my spine. Dirk went back to work and I decided to walk off the pain with some retail therapy. Earlier, I had decided not to wear my hat to the hospital. I was feeling a little braver as my hair has very slightly started to sprout a little. And besides.... wearing a hat can be warm and just a little bit boring !! So when I got into the shopping centre, after the 5th store, I decided to take my hat off and walk around with my newly sprouting hairstyle !! It was the first time I had done this - especially without Dirk on my arm. I've taken my hat off at cafe's and restaurants. But not alone, and not walking around. I was feeling a little intimidated (it was also school holidays) But I figured "fuck it" I can do this. It wasn't until I got into the supermarket and some kid started shouting "MUM...... WHY HASN'T THAT WOMAN GOT ANY HAIR" that I started to feel paranoid.    Why is it that an innocent child can make you feel like a freak !!!? His mum did the fastest supermarket sweep I have ever seen. There were skid marks next to the milk aisle !!! By this time, I was too mortified to get more shopping, but too proud to put my hat back on, so I grabbed the last few things I needed and headed out of there. I got back to the safety of home, my pups and a glass of vino. And tomorrow I might try going out in public without a hat again. Especially if it's warm.........

We've come a long long way together ..... Through the hard times and the good ..... I have to celebrate you baby .....I have to praise you like i should

It's been a hell of a journey so far... and I'm pretty sure we've still got a bit of a journey ahead of us too. I just hope that it's a smoother ride coming up and not quite as bumpy !!
SPOILER ALERT....I thought I'd share a few of the grizzly side effects from the past few months in this blog. From my stat's I can see that I'm building reader group from a website about Myeloma called "Myeloma Beacon". So for this reason, I want to share some home truths about my experiences that may help someone out there that doesn't have the support I've had.....If you know me (or work with me) there may be some things in this blog that you just don't want to know !!!!

• Diarrhoea - I had diarrhoea for about 4-5 weeks after transplant. Some days were worse than others. I was told to take "Gastrostop" if it got really bad. I only had to take this a few times. TIP*** buy some toilet wipes. These are soothing and stop any soreness !!
• Periods - I haven't had a period since January (when I started chemo) I was on 'The Pill' and my Dr advised to come off it when I started chemo as it increased the risk of blood clots. So I came off the pill. I haven't had a period since..... not sure why. My next blood test, I am being tested for hormone levels etc to check.
• Sterile - It wasn't until I met with my transplant Dr (Dr Brad) that he mentioned I may become sterile with all the treatment. It wasn't a concern for me as we knew children weren't part of our future plans. It still makes you feel a bit weird though. I'm not sure if I actually AM sterile now. It's one of the questions on my list for when I have my final check up in a few weeks.
• Tiredness - this is such a massive part of my day. I am now D+43 (6 weeks & 1 day) post transplant and I am still extremely tired. Some days I feel great and back to normal. So I go out and do shopping, normal day to day stuff, catch up with friends etc. Then I am exhausted and it takes me two days to recover. My body aches, my limbs feel so heavy I feel like I can hardly lift them..... I asked my Dr about it and he said "completely normal, you'll feel like this for approx 90 days" He said each month will just get better and better - I hope so !!
• Hair Loss - I've mentioned this before, and to share real truth (pubes included), the hair on my head fell out in clumps (so I shaved my head to a #1 all over) I am petrified it's still not growing back and I'll be bald for my wedding. The hair on my legs seems to have also fallen out. My arms stayed the same (I am blonde so my hair is very fine and fair anyway) my pubes (don't read this if you know me !!) fell out in patches. Not like a salon brazilian (as we would all love) but like a work-experience girl gave me a brazilian !! 
• Chemo Brain - I read about this when I was on CTD (my pill chemo cycles) and thought I was experiencing it. I wasn't !!! After my big dose of Melphalan (at the start of my stem cell transplant) I realised Chemo Brain had really kicked in !! I was vague, I'd stare off into space mid conversation and lose my train of thought mid-sentance. One thing I didn't do was drive for a few weeks. And looking back, this wasn't a bad thing. I just didn't have the concentration to focus. It could have been a disaster !!
• Skin Flakiness - I noticed my skin got pretty flakey for a few weeks. I got lots of dry patches on my hands and feet and my skin peeled off. I went through loads of skin moisturiser. I was told before I started treatment that my skin would be affected. I think I got off lightly with a few patches of flakiness, but I went out of my way to keep slapping on the moisturiser throughout the whole time I was taking chemo (pills as well as the infusion)

Some of my old UK cravings

• Taste - As I've said throughout all my writing, taste is affected by just about everything. It still is, but I think my taste buds are gradually getting back to normal. I've had some weird cravings. Mainly for things I had when I was little. Also cheese & pickled onions have been a big taste zapper. And chocolate and biscuits. But all in small amounts. So not too bad.

• Eyesight - Three months ago I had to get glasses. I'm not sure if this is my age (probably) rather than cancer. But I had my eyes tested last week and my eyes have deteriorated more already - this must be the drugs - My optometrist has said we will wait for another few weeks and then test my eyes again to see if it is temporary before I change my glasses again.
• Nails - my nails have grown beautifully !! YAY, this has been a positive. I've not read anything about other people's experiences, and it may be because I haven't actually done anything like digging the garden, housework etc etc to knock my nails and break them. But I thought I'd mention it as it was a nice side-effect!!

Should I carry on my blog?

I can't think of much else at the moment in terms of side effects. If there's any questions (no matter how grizzly) please feel free to ask.

Blossoms in our garden- Spring!!

The next thing to think about is wether I continue my blog...??? Now I'm in remission, is it worth it? What will I write about? Will anyone be interested? Do I care? ...... so many questions. I think for now I will continue. Especially until I know what the next steps are, in terms of treatment and ongoing care. I  can also share my bridezilla moments. It may be cathartic to share the wedding journey. Also I think I'd like to continue for at least one year. So I have my year to look back on. This will take me to Jan 26th 2013..... so for now, you are all stuck with me !!

One of the things I'm really looking forward to is "getting back to normal" although I have a feeling things may never be the same again...... sigh.....

Sometimes I feel like I don't know .... Sometimes I feel like checking out ..... I want to get it wrong ..... Can't always be strong .... And love it won't be long...

A Card I Received Today !! Brilliant
Thanks Lori xx

It's Friday and I'm home (yay) I was released yesterday afternoon and it was a GREAT feeling. Not that  I have one complaint about the staff and the care they give. But the food is quite bad and the boredom is ..... well just plain bloody boring !!
It was great to have a visitor yesterday (thanks Phil) I got the OK from Dr Brad that I could start to see people and not be as "anal" as I have been about being around people.
We had risotto for tea last night (made in the Thermomix of course !!) and it was "heaven" just delicious. We watched some TV then I sank into my bed and drifted into a gorgeous night's sleep.
This morning I had to have more bloods done. And I had to fast too as I was having one called FMBS (i think) which was a urine test then bloods. So I filled my bottle then Dirk decided to drive me in. I haven't driven for 3 weeks and  wasn't sure how I'd go.
Once in we also decided to go sand see Tina instead of calling her. She was glad we did and asked us to go back in a hour so we could see the results.
We headed down the road - away from the hospital - for a coffee, and I also popped into work to say hi to a few people & pick up some mail. It was nice to see a fe people and pickup the latest goss too !! ha ha! (and what goss I got too - omg) 
After our coffee we headed back to HCC and Tina called us in.
Bloods were good-ish! Haemoglobin was 105 (good) White Cell Count 3.8 (good) Platelet Count - Blood 210 (brilliant - normal range) Neutrophils 0.68 (not so good) I was almost neutropenic again. Thank goodness it didn't show up yesterday as they wouldn't have let me go home from hospital !!
But this means I am now back at home, have to be careful with visitors again, careful with my diet again, and I also have another get into jail (Hospital Emergency Dept) free card again. Damn !!! I was hoping for better than that !! I'm also back on the injections just for two more days..... sigh......
However, I am feeling ok so I guess that's good. Have been a bit snotty as a result of last week's cold, but I don't feel (touch wood) sick !!
This afternoon, I've decided to make a playlist based on my blog titles. Seeing as my theme appears to be quotes taken from songs, I thought I'd put one together. If anyone wants it, I'll attempt to make it public.....? It'll be a right miss-mash of music !! This is my 74th blog entry and approx 85% of my entries have lyrics as the title, so it'll be funny to see how the list plays (for me anyway)
So that's it for today.... I have been quite low this afternoon. It'll be mum's birthday on 28th and already I can't stop crying. I think I'm beginning to feel the pain of her not being here. I'm having "mum-moments" about 5 times a day at the moment. Probably because I have so much time...... Time to get better and get busy I think !!! I don't think I could not work.... I miss it too much.
Anyway, now I'm babbling so I'll sign off for the day..... 
Thanks for listening xxxxx

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.

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.

In this life long and hard though it may seem ..... Live it as you'd live a dream...... Aim so high...... Just keep the flame of truth burning bright.......

  I've been awake since 4am. A lie in really seeing as the past week I've been waking up at 02:21am !! I played solitaire on the iPad for a while and then thought "blog" .... why not?
Actually, I think I drank too many SSB's last night, so I also have a bottle of nutrient water open to re-hydrate before work today !! .... I know... I know.... shouldn't have done that !! I will never learn !!
The insomnia has been a little frustrating.... I have no idea why I'm waking up in the middle of the night. I'm not on any specific drugs at the moment so you'd think I'd be sleeping like a baby - or maybe I am.... just a newborn that wakes up every four hours !! doh !!
Dad sent a letter to his friends this week. It was so beautiful, but made me cry so much too. If anyone can write a beautiful letter it's dad. This is the time where everyone gets back to normal ..... but when we are left with a massive gaping hole in our lives where mum used to be. I think this is the hardest time of all. I can't imagine how hard it is for dad. If there's one thing I can't wait for it's that big hug that he's bringing to me in a couple months.... flights are booked for dad.... and also brother and sil (sis-in-law) !! WAHOOOO talk about exciting. Looks like that wedding might just be taking place after all.
Talking of flights booked..... we've also used some frequent flyer points to get my sister out from NZ to be a carer for me. Hopefully this will also help Dirk out from doing all the work.
We've been absolutely paranoid this week..... half of Perth seem to have come down with flu ... people are walking around town germ infested and coughing all over each other..... so far we've been lucky avoiding it. But then on Monday Dirk came down with the beginnings of flu.... I went into meltdown and barked orders at him about how to get better and getting to the Dr's. Luckily he was able to get in to see our Dr. and he was put on antibiotics. We haven't touched each other since and I've already gone through a can of Glen20 !! The last thing I want is to have a delay on next week's treatment. I just want to get through it and focus on getting better. 
Had bloods done yesterday and have an appointment with Dr Brad tomorrow. Then Monday it's more bloods. Tuesday is the day I have the cannula fitted then straight back to the ward for the Melphalan (chemo) infusion. Wednesday is a "day off" before the Thursday stem cell implant. I am then sent home to recover - being closely monitored by everyone. Sounds pretty simple to me !!! 
OK... I have to interrupt this serious talk as there is an ad on TV for "Magic Mike" mmmmmmm - this might have to be my "recovery movie". When I'm having a bad day, Magic Mike will have to be played. It could be the only thing that makes me feel better.... except Dirk of course !! <cough> of course. 
Where was I ? .... skin peeling.... another side effect I've begun to experience. Not quite as nice as Magic Mike..... reality is a bitch !! 
Well it's time to get up now and get to work. I have two days left before the break...... 
I'll try and blog as much as I can over the next few weeks. You may not get pictures and long updates but will do my best..... 

Winter Beach Day

First time in the Ocean

In this life long and hard though it may seem ..... Live it as you'd live a dream...... Aim so high...... Just keep the flame of truth burning bright....... - M-People - Search for the Hero Inside Yourself

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 !!