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......

And you light up my life .....You give me hope, to carry on. ..... You light up my days .....And fill my nights with song......You, You light up my life ..... You give me hope to carry on

Thursday 6th September 2012 - 11:59pm - Tomorrow is the day I get to find out if I'll be released from hospital and Dr Brad and say "cya" for at least (I hope) 10 years !! I have my appointment in 9 hours to be precise. I had my Zometa infusion on Tuesday and it all went easily enough. Nothing to it. Quick jab in the wrist, infusion in, flush out and I was out of there in 20 mins. Except I saw a friend who was just starting his transplant so stopped for a chat. We started off together and harvested the same day, but he has only just started his transplant now. If all goes as well as mine, he'll be feeling good in about 2-3weeks.
It's been a busy week. Getting back into stuff. I've been into work to talk to MD & CEO about returning to work. Not yet, but will be bored shitless soon enough and wanting to start some work stuff, so we discussed these options. Also doing wedding stuff - I'm getting some flashes of bridezilla already !! We've been working on the invites and I've been looking for the bridesmaid dresses. I won't say too much though as don't want to give any surprises away. But it's been ...... well, lets just say, it's been. And leave it at that !!
Actually, I'm too tired to finish now, so am going to sleep and will finish tomorrow after seeing the Dr. Hopefully will have more to add.......

My Beautiful New Niece

Friday 7th September 2012 - 09:26am (AWST)  NEWS !!  I am officially in remission !! YAY
Friday 7th September 2012 - 02:26am (BST) NEWS !! Isobel Emily Austin born !! I'm an aunty again YAY !!

What a day .... totes amaze-balls (told you I'd get that in my blog Callie ;-) so excited, and couldn't be happier.
So just to re-cap, I had my appointment this morning. We were a bit late as there was a crash on the way in, so we had to detour. Instead of 9am we ended up seeing Dr Brad at 0922 (I know because I had my phone out when he called me in) after a quick hello and chat about Carlton (he's also a CFC supporter)  he asked me about being in remission..... I told him I was waiting for him to tell me I was in remission..... and that's when he said "Vicky you are in complete remission" !! I was beaming and so was Dirk and so was Dr Brad !! He was really pleased with all my results. Kappa results were back to normal. D+36 !! All done and dusted - thank you very much - thanks for coming. All I have to do now is have a bone marrow aspiration (biopsy) in four weeks to confirm everything is back to normal.
After seeing Dr Brad we went to see a friend that I had met during treatment who is four weeks behind me and has had his transplant this week. He lives in the country so has had to check into hospital for the entire transplant time. We went to the ward to say hello and hopefully bring a smile to his day. He seemed to be going really well, which was great.

Champers? - probs, defs, totes !!

And at this point I got my message to say I was an aunty again. Well !! ..... you couldn't wipe the smile off my face at this point. Talk about happy. Tears welled up in my eyes as I thought about my family. After everything that has happened this year, this was the happiest moment we'd had in a very long time..... and I cried with happiness. Isobel Emily Austin is going to be the lucky little angel in our family.
Dirk and I took off from the hospital, put the lid down on the car and headed for the beach. It was a beautiful day and we intended to celebrate. We headed for Scarborough beach and went for brunch. Coffee first then as I flipped over the menu to peruse the drinks, I noticed they served bucks fizz !! Perfect !! It was time to celebrate.
We then headed up the coast and just cruised around for the day.

Beautiful Happy Day ....

Today has been a very happy day......

For anyone interested we'll be talking part in the "Leukemia Foundation - Light the Night" on 26th September 2012 if you're in Perth, come join us for the walk.

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.....

And if a double-decker bus.....Crashes in to us......To die by your side......Is such a heavenly way to die........And if a ten ton truck........Kills the both of us To die by your side........Well the pleasure, the privilege is mine........

So I'm lying here as we chat, and my old (new) stem cells have been put in !! Omg !! What a feeling !! ...... Actually there's no feeling at all. Just lying on a bed with a drip hooked up. I've had 2 liters of saline for hydration, phenergan (anti-histamine ... To stop the preservative in stem cells from reacting with me) my stem cells ( that smell like creamed corn) anti-biotics -Vancomycin to prevent infection.... And after that I stopped retaining information !! And I keep needing to go to the toilet !! Too much information ?
I woke up this morning feeling a little nauseous. But after downing a coffee, 2 x pramin, 2 x dexamethasone and an pantoprazole (ant-acid) I began to feel a bit better. Yesterday was a good day. No side effects to write home about. Just the frustration of the cvc in my neck. Uncomfortable and a bit itchy from the stitches. I'd only been able to sleep about 2-3 hours on Tuesday night. But last night managed to catch up with about 6-7 hours. Nice !!
Straight home from here and onto the couch... Will see what's on tv and wait for the drugs to kick in...... No visitors for the next few weeks. We even cancelled the cleaning lady !! WTF !!! Luckily on my "take home notes" it actually says no cleaning or gardening !! Haha ... Fabulous I say !! Now if we could just get the dogs using the anti-bacterial hand/paw gel i reckon we'd be good to go.
I've been told I'll get very tired soon, so will pause for now and catchup later.
This is all I have at the moment..... Just saying !!

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 !!

And won't you kiss me..... On that midnight street....... Sweep me off my feet...... Singing ain't this life so sweet

When I was a little girl ... about 4-5 years old.... our nana would take my sister and I to the Harvest Festival at the local church in Castle Donington. There would be vegetables and flowers all over the church. Displays made out of seeds, fruit and vegetables. I don't remember much else about it. Just that cool, calm feeling in the church, voices echoing, the sunlight shining through the stained glass windows.... and my nana holding my hand so I wouldn't do my normal disappearing act, which I always did if i was free of a hand. My grand-dad was a market gardener, so Harvest Festival was always an occasion that was close to nana's heart.
That was all I knew about "harvesting" until this past week...... 
This latest harvesting experience was not about vegetables or flowers though. It was about plasma..... white blood cells... and stem cells. Building up the amounts so they could be sucked out of me and put on ice. So that in a few weeks I can have them put back in. This is the new harvesting in my life.
The flu like symptoms were the worst on Saturday. Fever, aches, headache, bone pain. It was awful. I went to bed wrapped up with PJ's on, electric blanket on and heater on. This was still not enough. At 2:30 am I was still awake and not feeling good at all. I had a temperature of 38.6C at one point. But most of the night it stayed around 37.5 - 38C. I woke up in the morning soaked through.... I had sweated so badly overnight, I'm surprised I hadn't given myself an electric shock from the electric blanket !! .... But I actually felt good. I got up and had a hot shower.... by the time I had changed and freshened up I was really feeling 100% better.  
The injections over the week were administered by Dirk. He became really good at it. One tip.... don't rush the injections. It is less painful by just taking the time to do it slowly and easily. The bone pain became manageable eventually with paracetamol. I had to walk slowly as any jerking on the body sent pain through your skeletal system. Mainly the sternum, ribs and spine area. A little in my legs - not much in arms or anywhere else. But I did get neck pain and head spins from moving my head too quickly.
So as I said... Sunday I was feeling pretty good. We decided to go and look at a couple of wedding venues in the Swan Valley. It was a beautiful sunny day. Although it was a bit cheesy with all the stretch limo's, Wedding singers, cake decorators, wedding planners...etc ...etc... we did have a laugh. AND... we think we may have found a venue..... and a date !! WAHOO !!! It's actually feeling a little bit more exciting now. I think I could get into the wedding planning shite... 
Onto Monday....7am we were on the road to pathology for the blood tests. Hospital, blood testing and potential harvesting day.... I say "potential" because based on the blood test results, the actual harvesting may or may not take place. There is a three day window for the harvesting, so if the blood results are not good enough on the first day, then they send you home to continue with the injections and repeat the process the next day. My blood test results were good so I was in for the harvesting. 
I also met another MM patient that I had met the week prior - he was on exactly the same cycle as me. We saw him at pathology and then in the Haematology Care Centre we got to chatting. (and swapped numbers) He had also had a rough weekend. Infact the symptoms had resulted in him going to Emergency on Saturday night with the fever, sweating and bone pain. Unfortunately the emergency department did not see his condition as an emergency and did not attend to him at all. He ended up leaving and going home.... this is not a good sign for the future !!

Harvesting means that you have two cannula's (one in each arm) inserted. One for blood out and the other for blood back in. In between the two arms was an "Aphorises" machine called "Freida" There is also one called "Agnetha" in the department.... anyone seeing something here? Dirk said he saw an old looking retired machine called Bjorn near the toilet.... No idea where Benji was !!
I was hooked up at about 10am onto Frieda and my new friend was across the room hooked up onto Agnetha. The cannula's went int easily and we were off...... well not quite. every time my nurse walked away. Frieda had a meltdown and red lights started flashing.... and my blood stopped flowing. When on this machine you have to sit with both arms straight. No bending as this sties the blood flow. The only thing that stopped this from happening was if I sat up straight. No slumping. I was laughing saying that mum must have been watching as I was always in trouble for slouching !! So after a disastrous first hour I was up and running. My mate across the room already had plasma collected in his "drip bag" ..... I was jealous as mine was still empty. Where's the fun without a bit of competition? But we were on our way......
The next five hours were not fun..... as I couldn't move, it gradually became more and more difficult. On top of the fact that I was to stay as still as possible, I also started to react to the anti-coagulant that they transfused back into me along with the left over blood after the stem cell's were skimmed off. The reaction to this was a pins and needles like feeling throughout my body, but mainly in my face, neck, legs and thighs. I was warned that I could get this reaction and that my lips tingling would be the sign. As I am such a brave thing and the tingling did not start in my lips, I may have been delayed in telling my nurse that this was happening. And so by the time I was hooked up to the added calcium infusion to assist in the tingling, my body was crawling..... and I still couldn't move. This all happened around 12:30pm. Little did I know that I still had another four hours of harvesting to sit through. 
Needless to say I was pretty uncomfortable for the next few hours. I managed to hold back a pee until around 3pm, but realising that I still had a while to go, I asked for the commode to be rolled in. A little embarrassing, but at least I didn't have wind or need a <cough> number two !! The tingling / pins and needles did not subside after the 1st litre of calcium, so I had to have another litre bag out into the IV. Finally at 4:20pm we had collected enough plasma / white blood cells / stem cells to be considered a "good collection." We had reached "target". The cannula's were removed and O...M...G.... I was finally able to move my arms. They were soooo numb. I was tired, headachy and stiff. I was the last one out.
During the collection, I was also able to chat to the Nurse Practitioner about the stem cell implant phase. We set a date for the implant and I got all of my questions answered. 
I have to say the nurses and staff at the haemo clinic are really amazing. They give personal care and never make you feel like just another patient. Names are remembered as are previous conversations and snippets of information. 
My implant starts on 30th July..... 
And so I returned home.... and have spent the past two days at home sleeping and relaxing. I got a call yesterday to say the quality of my collection was good and I was not required to go back in. This was also good news as I had to continue the growth hormone injections just in case I would have to go back in. 
Today was the first day in 165 days that I have not had to take any cancer related drugs.... and it has been a good feeling day. 

Close your eyes and surrender to your darkest dreams…… Purge your thoughts of the life you knew before……. Close your eyes, let your spirit start to soar…….. And you'll live as you've never lived before……..

I've never felt so sad and numb in my entire life...... and so far away.
Sometimes I feel like it's just not real, and then I realise it is.... and I start to cry. The heaviness in my heart and those moments when the pain in my heart takes my breath away and all I can do is let out a moan of pain as the tears start again, is one of the worst feelings I've ever had. But most of all I hate being so far away from the rest of my family.... I just want to be with them. To share the pain with them, share my tears with them and hug them and have my dad hug me back...... But I know it's just the wrong time for me. I can't delay my treatment - especially not now. Mum would haunt me forever if I did !! God I miss her......
I have two more days of Thalidomide and then that's it for a while. There's a chance I may have to take it regularly after my stem cell treatment.... but I have to wait and see what Dr Ben says in a few months time.
I had a bone marrow aspiration today or a "BMA" as they had written on the form. Have you ever noticed how certain numbers and letters follow you forever? In my life it's number 4 or 41 and then MM (Micromine, Multiple Myeloma) BMA are my dad's initials !! ... anyway I digress !! The bone marrow biopsy was a little painful. No sedative this time... just Dirk's hand to hold onto. (which did get crushed there for a few moments) The registrar did use a local anaesthetic which numbed the surface skin, but when she started to drill out part of the bone it got a little uncomfortable.... to say the least.... and then she went back in for the bone marrow. And the same feelings were experienced again. But overall after about 10-15 minutes it was over and I could relax while I had my Zometa infusion...... no problem.
On the way home we stopped off to pick up my new geeksters (glasses) After realising that I was holding books and labels further and further away from my eyes to read them, I needed to get my eyes checked, the optometrist prescribed me with my first pair of glasses. I figured if I was going to lose all my hair, then I would need something on my face to look nice.... so I picked out some groovy Prada ones !! Mum would have been proud !! Back at home, I started to work as the anaesthetic wore off. By around 4pm I felt like I'd been kicked in the arse.... hopefully all will feel better tomorrow.
Sitting in the Haematology Ward today, we listened to everyone around us. It's a great way of finding out information as most of the patients are going through the same thing. Most of the patients were men of about 55 yrs and over. But they all seemed relatively happy. The man next to me was having chemo. Exactly what I'll be having next week, so Dirk & I were listening to everything the nurses were saying.... suck on ice the whole time to prevent mouth and throat ulcers. Apparently the more you do it, the less chance of ulcers there is..... I reckon I'll be doing that, I'd lick the bloody freezer if I have to!!
But before I start thinking about next week, we have to get through mum's funeral. I can't imagine how my family are all coping. In some respects, I wish I was there..... but on the other hand, am I fortunate that I'm not? .... I don't know.... Friday I'm having a morning tea / champers / get-together in memory of mum for all the friends she had in Perth. I know I'll sob, cry, get all teary.... but hopefully we'll have a good laugh too. That's the idea. No dreary mourning.... more of a celebration of the love mum bought to the different people she met. We have received the most beautiful flowers and cards this week. And the amount of messages has made me cry over and over again. I've said it before, we really are quite lucky to have the love and memories that we have. Even though it's an absolute bastard with what's happened this year. At least we have each other, and the most amazing family, memories and people around us.... for that we are extremely lucky ..... and blessed.

As always it is the middle of the night, and I have to be up for work in a few hours. So must get some sleep.... if my family are reading this, know that I love you all sooooo much. And in about.... 3 months I will be ok to travel again.... so look out !! I will also be very keen to meet my new niece. Not to mention see my other niece & nephews. Love you xxxxx.... and to my mum, I love you forever....

you brought hope, you brought light……..conquered fear, it wasn’t always easy……...stood your ground, kept your faith……….

And as The Royal Barge moors against the banks of the River Thames..... I search for my bed. It's 12:30pm on this little Commonwealth country and as happy as I am to sit & watch Lizzy all night, I have things to do tomorrow so can't stay up much longer. I will have to watch the replay of the highlights. But I must say, at least our public holiday WA Day (previously known as Foundation Day) has coincided with Diamond Jubilee day. Although having said that I'm a little disappointed that the whole Commonwealth doesn't see fit to give us 2 days off to celebrate our Queen !! ..... I'm just saying.....
 We've had a fab day today... I made some macaroons to take over to our neighbours (G & C) where we were invited for lunch. Loved it. They are great entertainers and we sat outside looking over our roof at a slightly better (?) view than ours (higher than our place but couldn't see the city.....) and ate and drank and talked non-stop. Before I knew it myself & C had polished off 2 bottles !! As I said lovely. I was feeling pretty druggy. Yesterday was the start of the "run out of pills cycle7" Dr B told me to carry on taking Thalidomide every day, but to just run out of everything else. So Saturday I took my second to last dose of Cycloblastin and then yesterday, today & tomorrow is all I have to take of Dexamethasone and then that's it !! wahooooooo !! I won't know what's hit me not having to take those drugs..... although with the next appointment with my new Dr B looming, who knows how long it's going to be before he sends me in for the mega doses of chemo and the start of the Stem Cell Replacement !! ah well... mentally it's nice to know I'm nearly out of pills. It's been 129 days of them so far.
So anyway, back to today and my baking !! We got back from G & C's and I needed to prepare for tomorrow. It's Dirk's dad's birthday and he has requested everyone to bring a curry. I decided I needed to bake more macaroons too, oh and a birthday cake for him. So we hit the kitchen. My macaroons were ok-ish.... (ok so the last batch "may" have been out of a Donna Hay box) and mine were a real recipe..... the weren't shiny !! Does anyone know why? They looked a bit matt and not smooth.... I'll have to google why. They tasted bloody lovely though. The chocolate ganache filling works a treat!! I made the cake, but am filling it tomorrow with jam & butter cream. And the Rogan Josh is in the slow cooker over night ..... smells bloody delicious.... I'll be dreaming of India tonight..... or maybe Leicester !!!

Sitting in the Chair Relaxing

Zometa Infusion

Seeing as I'm coming to the end of one stage of this health journey and about to start the next, I've been doing a bit of reflecting. It's been a bloody tough 4 1/2 months in some respects.... especially for Dirk who's had to sit and watch, worry and cop every mood swing that he has just happened to be in the vicinity of, when they happen !! (ok not sure if that sentence makes sense but I think you'll know what I'm trying to say) ... but back to me... I'm not saying it's been an easy few months, in fact anything but easy. But I also appreciate how lucky I've been through all of this so far.   Sitting in the hospital on Friday as I had my Zometa infusion shows me this. There are all sorts of people in there for (I'm guessing) all sorts of chemo at every stage of treatment. Some look sicker than others. But they all smile - most of the time - but I see how lucky I've been so far. I've carried on working, and although some days have been a real struggle, I haven't had to quit or even go part-time. I've remained relatively healthy throughout. These next few weeks I need to be really careful. There is a lot of sickness around at the moment, and the last thing I want to do is pick up a bug right before I start the stem cell stage. I'm a bit scared about this next part. Mainly because I really don't know what to expect, how I'm going to react to the treatment and how I'm going to feel. With the way everything has gone so far, I'm sure I'll be fine. I know it's going to be tough.... but I'm young, healthy and strong. So this is a real positive. But it's still scary !! One of the things I'm a bit scared about is all the needles and drugs. I'm not scared of needles at all but I get the feeling that all the needles I've had so far are nothing compared to what I'm about to experience. And the drugs I've had so far..... a drop in the ocean compared to the next stage .... yikes !! Oh well, if I expect the worst, I can look back later on and say "well it wasn't as bad as I was expecting" !! hahaha. And there is always someone doing it much harder than I am, so I do appreciate how lucky I am. No more whinging...... especially as I'm no longer a pommy !! OMG can I say that?? Sorry mum, I'll always be English, don't worry. I know my heritage !! Especially on day like today too !! BTW - the title lyrics of todays blog are from Gary Barlow & Andrew Lloyd Webber's special Diamond Jubilee song 'Sing" I haven't heard it, I just found it and Googled the lyrics, so if it's a really crap ditty, I completely apologise. But I did read that Harry did a tambourine solo on the song which I thought was nice..... wonder if Pippa finds that a turn on?? I guess he'll find that out later at the after party !! And we will read all about it in next week's illustrious and fabulously articled Women's Magazines.... and I will ready said article in about 10 years time in some dentists waiting room and find out what really happened as I don't read the aforementioned mags !!
And so .... time for sleep. Night night, God Bless all and
God Save The Queen !!

I wonder if you can pick up.....My accent on the phone.....When I call across the country......When I call across the world......

The Benefication of Coal.... Washability Tables..... Interpolation..... this is the current subject I am sitting in, at work. As I look around the room everyone seems to understand what is being talked about..... and then there's me !!! Although I just got a quick look at the person's laptop next to me, and she's looking at holidays in Koh Samui !! .....
My week so far has been ok.... in an "ordinary" world I would have been enjoying the week. (From a nerdy... I like my job perspective) But add Cycloblastin, Dexamethasone & Thalidomide to the mix and the fun factor changes completely. My business unit is running a training week for all of our technical people from our international offices. It has been arranged predominantly by the operations manager. All good I hear you cry..... until he took sick last Wednesday and hasn't been back to work since !! The visitors arrived on Fri / Sat, with a day out to The Swan Valley organised for Sunday. And out of the five people that would be running the conference for the week (from the Perth office) three of them were sick. So Sunday I went out on a bus to play Supa Golf and taste wine, cheese & chocolate.... not bad at all actually !! I even managed to come home with a case of wine and an oversized bag of chocolate too !!

It is now Wednesday and the week has been run mostly by one guy that has only been with the company for a few months.... (He'll probably want a pay rise now !! yikes !!) It's actually not been too bad, but the stress levels have been running pretty high, as I'm worried that some of the content has been missed..... Being a "non technical" person there's not a great deal of value I can add, so I just sit here and make sure that I look interested and am here to support the "technical" people and make sure no-one falls asleep!! Monday & Tuesday were horrendous for me. They always are, coming down from a Big-Drug-Saturday. It's the shittiest kind of feeling. The worst part is the complete exhausted feeling. Every bone, muscle, blood cell and tissue in your body is tired and sluggish, so to do anything is a real struggle. And the birdcage mouth is beyond awfulness !! The hardest part though is pretending that you're ok. I'm not sure how many people I fooled, Dirk will tell you that he certainly copped it back at home, most of my niceness was exhausted by the time I got home..... I knew I'd start to feel ok by today... and I have. The cloud is lifting. I'm taking them out tonight for dinner in the hope this will score me some brownie points !!

I really should get myself a Dictaphone though. The past few days I've had the most amazing ideas that I wanted to blog about..... little subjects that I thought would be good to discuss, but for the life of me I can't remember any of them now.. I can say they were amazing ideas because you'll never know !! If I remember them now and add them, you might think they're shit ideas..... but in my mind they were bloody good ones !! I'm not even close to remembering them now. Yesterday when I was driving home, they mentioned on the radio it is 209 days to Christmas.... this is a good Facebook update (I thought to myself) I knew it would wind people up.... I was excited to see who would bite .... didn't take long !! It's like supporting "parents who slap their kids" Love it !! I'm a big supporter ....

Next Friday is the day I get to meet my new Dr. Another heaematologist. He will go through the procedure of the Autologous Stem Cell Replacement and I should have more of an idea about timing etc after this appointment. This leaflet explains quite simply about the procedure. It goes wthout saying that it's going to be a tough journey..... at random times my mind starts to think about what's ahead. I can be in the middle of a conversation and suddenly I'm thinking about stem cell replacement and chemo...... or half way through a phone call at work, it's not hard to lose your train of thought when this happens. Sometimes I don't know if it's better to be alone with my thoughts or worse.... It can be pretty echoey in my mind sometimes. Other times I can't even hear myself think because of the cacophony !!

Eye's are drooping like you wouldn't believe so going to sign out and publish this, but I will edit again tomorrow so......... watch......... this..............space................

Gonna take your mama out all night ……...Yeah we'll show her what it's all about………...We'll get her jacked up on some cheap champagne……….. We'll let the good times all roll out..........

Dad's B'day Pressie
Printed onto Canvas #1

HAPPY BIRTHDAY DAD !!! I hope your day has been ok. It was great to see you open your pressie on Skype :-) hope you liked it !! Love you LOADS xxxx

My week so far has been pretty good. I think the news of the Kappa results have lifted my spirits slightly. Every time I think about it I get a slight grin spread across my face. A kind of proud one.... it's like .... I'm doing it.... I'm beating it !!! ha !!! I'm still slightly nervous that there's been some mistake though. I really need to talk to Dr Ben. I need confirmation that it's all true. I also realised tonight that I'm going to run out of Cycloblastin before I see him again, so will have to call his rooms tomorrow and see if he can get a script to me before next week.
Even though it's been a better than average week so far (and I guess it's only Tuesday !) I have been plagued with the same 'drugged up to the eyeballs' feelings. I've been beginning to wish for just one day of feeling 'normal' .... one day of how I used to feel three months ago before I knew any better..... there is absolutely no escape from the drugs. You never get a break from them. Even on a good day, it's not that you don't feel the drugs.... just that they aren't making you feel like either a zombie, a psychopath with a bad period or an emotional emo who just lost their last razor blade !!!

#2

I've thrown myself into work. And I have a crazy couple of weeks ahead too. Hopefully the good feelings will last. I start back on Dexamethsone again tomorrow..... and I have a management meeting in the morning, a client workshop in the afternoon then a staff dinner tomorrow night !!! The last thing I need is any of the above mentioned mood/personalities surfacing whilst in public !! I also have to go back to the cancer clinic on Friday morning for another Zometa infusion. I'll have to watch myself on Friday with that one........ I'll keep you posted !!

Part of wanting to get back to normal is also being able to get back to normal at work too. It's end of financial year time for us (well end of June) and we are starting to work towards the next FY. Budgets, planning... all the stuff I enjoy. It's hard knowing that I'm going to miss a chunk of the year, but not knowing exactly how much. This is the part of my job I really like. But when you don't know from one day to the next how you're going to feel, it's hard. And at times I also get a bit of "chemo brain" and go a bit vague and forgetful too ! Not a good look !! I still struggle more in the mornings. Dirk has been tasked with waking me up with a coffee at  least two hours before I'm due at work to give me a chance to come around !! Next week is even busier with all of the regional managers in Perth for a HQ conference. I can't miss that !!! At least we have Broome to look forward to after that's all over. Sun, swimming, relaxing, spa, massage, room service....... paradise. I can't wait.

#3

But above everything, all I wish for at the moment is for mum to start feeling better. I wish for her to get well enough to go home (from hospital). I'm pretty sure that she's wishing for the same thing. And I'm also sure that she's sick of being sick. It's going to be one hell of a party when we all get together at the wedding !! 

So not a massive blog entry tonight, but it's now 12:30am and I have to be up in a few hours. Big day tomorrow so I'm going to sign off. Next blog will be post-dexa days. Hopefully not too bad, but I can't make any promises. 

On a final note, thanks to all that have sent messages, emails and txt messages. Sorry if I don't always respond. But I love receiving them so please don't stop. I will keep writing what I think & feel, so don't worry...... it's all good xxxx

Non, rien de rien….. Non, je ne regrette rien……..Ni le bien qu'on m'a fait…….Ni le mal; tout ça m'est bien égal !

I've discovered that one of the hardest things to deal with writing a blog, is realising that people actually read it !! And then have an opinion about it. And then choose to share those opinions too....... So what do you do? Stop sharing your inner most thoughts and feelings ?.... stop writing in case someone needs to "discuss" your meanderings ....or do you carry on writing regardless ? I mean, I've chosen to put it out there.... it's now in the "public domain" for comment, so it's not like I really have a choice anymore. If I wanted to remain private I wouldn't have started a blog.... would I? But I'm not sure I'm up to the scrutiny of analysing what I've written once it's out there. I don't write.... sit on it.... edit it.... go back to it the next day and re-read.... then publish it. I just write and then press "publish" done !! If there's a comment about it, sometimes I have to go back and read it again to remember what state of mind I was in when I was writing.
Now I'm also in the dilemma of having to think about what I write before writing in case it will cause comment.... something I didn't want to have to do. I'd rather just write and be done with it. Maybe I should just write a diary.... but not publish it. At least that way I'll get to write exactly what I really think !! The "un-edited" version. I'm being selfish when I say that this blog really is all about me. I've found it very cathartic writing down my feelings and seeing where I get to by the end of the blog. It's like when I used to write a diary when I was a teenager. I had a message at the front of my diary saying "if you read this diary it's your fault. You may read something you don't like.... " I feel the same about this blog. If you read it, then it's up to you. But don't question the author.... as I've said from the beginning, it's my thoughts and feelings. Sometimes written at 2am in the morning, drugged, tired, wired, depressed, happy, sad, emotional..... I cannot be held responsible for the content.

It's been a tough couple of days (post Dexmethasone) Thursday saw the shakes return for a few hours - a good look in a management meeting at work !! (NOT) then complete tiredness take over me. And pretty much the same feeling all day today too.(Friday as I write this part) Along with the feeling of flu (and diarrhoea and tummy ache too) Home to wrap up in a blanket and sleep for a few hours until I could manage to stay awake to watch my footy team win !! YAY - go The Blues !!

I went to see Dr Ben on Tuesday evening. All was OK but he didn't have all of my blood test results. He said to call Thursday - which I did, but they still weren't available. So I emailed today to see if they were back. The receptionist responded with the results which I track - Kappa reading from the "Serum Free Light Chain Test". Last time I had one it was 144..... When I was first diagnosed my Kappa reading was 402. (Normal range is 3.3 - 17.9) It has been progressively dropping each blood test ..... and then I got the latest results. 29.3 !!! Holy Fuck !!! 29.3 !!! A-MAY-ZING!!!!  This is so close to being within normal range..... But the fact that I can't talk to my Dr about it until my next appointment is a little frustrating. There is such a massive change I'm not sure wether to believe it. Pretty happy about it though :-) I still believe I am going to beat this shit.
I had arranged to meet an old friend on Monday for a catch up. I bumped into him one day and after a quick chat he told me he'd been through everything that I was about to embark on. We've been trying to hook up for coffee ever since. Monday was the day we were finally meeting. But his txt said that his cancer has come back and he had to cancel. This is such devastating news. And I feel so angry for him. Such a shit disease......  I wish him all the strength and determination in the world to get through it.

It's Saturday now.... I slept until 11am !! and I feel better for the BIG sleep. I'm now sitting in PJ's watching Chicago Hope. I woke at 8am, cold, because the doona had been stolen from me. When I turned over, Dirk and Maverick were lying together "spooning" wrapped "romantically(?)" in my doona !!! Something not quite right about that..... May have to have a little "talk" later !!

I feel fine and I feel good...... I'm feeling like I never should .......Whenever I get this way I just don't know what to say ..........Why can't we be ourselves like we were yesterday...........

It's been a bit of a crappy week so far.... but not because of me. Unfortunately mum has had another setback. No matter how much you stay positive and convinced all is going to be ok, it's bloody tough waiting for the phone calls and updates. Never really knowing if all the news is coming through or if it's the edited version !! One thing I've learned is that bad news across the phone is one of the hardest things to deal with...... Mum has now lost one of her kidney's and has had to go on  a bypass for a while to get the other kidney back into shape and working again. Not a great situation but something that has to be done to get her better. But my god.... if there is someone out there that is strong, it's my mum !! She is amazing, her journey has been going for a lot longer than mine, but she has never once let it get the better of her. It must be where I get my strength from !! Mum, everything I've learned about being strong and staying positive, I've learned from you and dad..... We will get through all this together and celebrate as a family at a large event in the near future !! I love you both more than anything xxxxxxx (now stop leaking and read on.... it's all about me here !!)


My week? ..... drug induced, more pricks (of the needle variety - well mostly!!) and work filled..... Nothing much different really. I had a feeling I was beginning to understand the drug cycle of my chemo a bit more..... but then I'm not so sure. I think I know the signs.... but the goalposts keep changing. Some days I'm tired, others not so much. Somedays I feel fine for a few hours then fall in a heap by the end of the day. Then lie awake until 2am.... I think I've worked out that the Dexa makes me online shop !! (secretly I LOVE that !!) This week it's been a new doona/quilt for winter, new sheets and a new bag !! faaaabulous....Mornings are still the hardest. I find it almost impossible to start my day before 8am. I wake up groggy and puffy eyed (very attractive I might add - for those of you who know my morning state of affairs ... hair styles.... manner etc you will appreciate how extra grogginess and puffy eyes can only enhance that delightful morning Vixen style) 


I think I'm staying on top of my work. Hopefully people aren't bitching behind my back that I'm not doing a good job.I'm pretty sure they bitch behind my back a lot, but not because of any drugs I'm taking !!.... I'd rather know than not. At least to be aware of where I'm slipping. I'm making an inordinate number of lists and notes these days to try and keep on top of what I have to do. I don't really stop working at any time. If I have a break in the day, I'm still working into the night....I actually seem to get more done working from home at the moment. Solid hours sitting in my pj's at the computer is not as bad as I thought it would be. I'm not just saying all this either... I really love my job. It's challenging, different every day and I like the variety of my work. I love the industry and technology and love the company I work for. Not many people can say that... so I think I'm pretty lucky.The chemo really makes you forget things though. Even from one meeting to the next I can forget what the topics of conversation were about...... but maybe that's my age and nothing to do with the drugs at all !!! As I said.... lots of notes and highlighter pen.


I did another stupid thing today ... another sugar overload !! OMG it was just ridiculous..... what was I thinking. The Cyclo & Deza together really messes with your tastebuds...... and I mean BIG time messes. Nothing you eat tastes like anything. So I was trying to find something to zap my buds into a frenzy and satisfy me. Instead of feeling like I was eating a plate of tissues. So after a piece of homemade pizza I thought I'd try the sticky date pudding left over from last Sunday. Now last week I wasn't on the Dexa (just the Cyclo) so I managed to get some flavour into my mouth before it disappeared. This week...... not so much !!! But I managed to overdose enough to blow out my little stomach pouch and get a sugar rush without tasting a thing !! blluurrgghhhhhh what a waster of a sugar high !!! It was shitty.... feeling sick but without any of the sugary satisfaction. Like I said... a complete waste of sugar !!!

And the other thing we did today was look for a new car. It is getting to the point now that we can't take the dogs anywhere as we don't have a car that fits all of us in. I'd seen a car online yesterday (Friday) and enquired about it. I mentioned that we'd go and have a look at it this morning, but when we got there it was sold !! He'd sold it yesterday but failed to mention that on the phone.... bloody car salesman !! I was so angry. Don't mess with a girl on drugs !! He tried to show us other cars but I wasn't interested. On our way out we stopped at the Audi dealership and Dirk saw a nice A3 Hatch which could work. So maybe we'll change our search and see about test driving one of these.....

Miss T & Mr Q

Cake & Candles

And then it was off to our god-daughter's (Miss T) 6th birthday bash at the park. She is just beautiful and we love her. Unfortunately the party side was cancelled due to a sick filled week for Miss T's mum with Mr Q, so it was just god-parents today, but we had a great catch up and a bit of a play. A few girly giggles and chats. (with mum and god-mum to Mr Q)The boys talked non-stop sport (cricket, bowling - lawn bowls (wtf?) and footy) and we talked everything else.(shopping, sex, men, and stuff) The kids ran around and played, the sun shone, it was relaxing and fun.....


On the way home we stopped at the shops to grab a birthday pressy for an upcoming family member's birthday ;-) Got home to watch a very bad, boring and scrappy Fremantle vs Brisbane game of footy on the telly and promptly fell asleep for a couple of hours. Watched a bit more of our current TV show (Fringe) and that brings me to now.... 1:50am Sunday morning. Time for more sleep now I think. Tomorrow is washing and a few bits and bobs to do in preparation for next weekend's engagement party. I can feel a couple of trips to Bunnings on the cards for tomorrow..... but what's a weekend without a trip to Bunnings??