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

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

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

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

This life well it's slipping right through my hands...... These days turned out nothing like I had planned..........

sad (sd) adj. sad·der, sad·dest 1. Affected or characterised by sorrow or unhappiness. 2. Expressive of sorrow or unhappiness.

grief [griːf]

n

1. Deep or intense sorrow or distress, esp at the death of someone

The past two weeks have been ........ sad, surreal, awful, emotional, lonely, tearful. There are so many words that don't seem sufficient for what I've been feeling. I still don't really think it's sunk in that I've lost my mum. I still picture her at home with dad. Still think about her all the time, still think that I can just pick up the phone and call her, and then I have to tell myself that she's gone. And I won't be able to speak to her again. I don't know if I'll ever be able to get over that. How does any daughter (or son) cope with that feeling?
The funeral was last Thursday and that was the worst day. I lay awake most of the night crying because I wasn't there. Crying because my dad had lost his best friend - the one that he'd been with since 1959. But most of all because we are just going to miss her so bloody much. Apparently, at the funeral there was standing room only. So many people were there that my family were overwhelmed. But I guess it's not really surprising as my parents have soooo many friends. And she was so incredibly loved by all the people that met her.
One of the nice things that has happened, is the amount of donations that have come in. Dad has asked that instead of flowers, people donate to either bladder cancer (UK) or leukaemia foundation (Australia) and when I spoke to him on Saturday he said they'd had over £1800 in donations to the two charities. 
Here in Australia, we decided to have a morning tea for mum so her friends here (and myself) could say goodbye too. It was sad, happy and lovely. Just having some of mum's friends around me helped. She really did know some beautiful people.
On Saturday, I slept until 1:30pm !! 
And now, I have just 4 days before I start stem cell replacement. Last Thursday I took my last Thalidomide for a while (I may have to continue taking it again later) and on Friday I go in for a dose of chemotherapy before being sent home with growth hormone injections for 10 days. Then I return to hospital for the stem cell harvesting..... it's going to be an interesting journey!!
I have a crazy week at work - last week of the financial year, performance reviews, new staff, interviews. And in between all of that I have to go for a heart scan and then the chemo on Friday. They say the chemo could make me tired.... it's going to be hard to know whether I'm tired from work or the drugs !! 
I have some TV shows saved to watch though. We've just started watching "Girls" and are about to embark on the first season of "Breaking Bad" so at least I won't get bored. And I can always blog .....
I'm not going to ramble on about how sad I am. My mum certainly wouldn't want me to. But I'm also going to make this a short entry as the big week ahead start in just a few short hours and I'm going to need some beauty sleep.
Big thanks go to everyone that has helped our family in the past few months, whether it's just a call or message to say you are thinking of us, or by physically being with one of us helping. Thank you to everyone. The cards, flowers, support, donations, messages.... everything has been overwhelming, but also comforting to know that all over the world we have support. Much love to you all.
And as my mum would say....... night night... god bless


This is the poem that my sister read out at mum's funeral - I think it's beautiful......

Do not stand at my grave and weep, by Mary Elizabeth Frye, 1932 
Do not stand at my grave and weep,
I am not there; I do not sleep.

I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain. When  you  awaken  in  the  morning’s  hush I am the swift uplifting rush

Of quiet birds in circling flight.
I am the soft star-shine at night. Do not stand at my grave and cry, I am not there; I did not die. 

There were some guys on the trapeze at our local park tonight. 24-June-2012

Don't cry for me, Arthur Negus...... The truth is, I never left you ....... All through my wild days, my mad existence .......I kept my promise......... Don't keep your distance ........

Mum passed away peacefully on Tuesday evening with Jo, James & Dad holding her hands and surrounding her with love. It is by far one the hardest moments of my life..... not being able to hug her and say goodbye, not to be there when everyone else is. But I know the last thing she would want is for me to postpone my treatment. To delay everything for her. And to be honest, when I see that cancer has taken her from us, the last thing I want to do is delay my treatment. I am now more determined than ever to beat this.
The lead up to mum's passing was by far the hardest part. Waiting for the news to come through.... writing the letter to her.... and calling her on Tuesday to tell her myself how much I loved her. These were the hardest things I have ever done. Being so far away from her has left me a little numb. But I also have the benefit of being able to remember her as she was before the end. I am lucky in that respect. I will remember her face and her laugh and the picture in my mind will be of a healthy and happy person. Not frail and sick. 
I feel quite sad that I am not able to be with my dad and brother and sister at the moment. They are all together and helping each other through the loss. I am over here separated from them when all I want to do is hug them all and be with them. Life certainly isn't fair sometimes. At least I have Dirk. He has (as always) been amazing. 

And so now the arrangements are being made for her funeral. To say the last goodbyes and I guess, for those of us left behind, to find some closure and peace. 
One of the hardest things to cope with is the random times that sadness hits you. The past few days I've been ok one minute then tears streaming the next. At work, I can be happily distracted with an email working on something, then the next minute overcome with sadness and find myself sobbing. I can't imagine what it's like for dad..... Hopefully time heals and takes away the hits of sadness so they aren't as raw. I don't think I'll ever get over missing mum. I'm already "talking" to her. Everyone keeps saying that she's probably here with me already...... I imagine she's here.... with dad..... with all of us. 
I can't imagine what life is going to be like from now. I've never really thought about what it would be like without my mum. I can't imagine not being able to speak to her, not being able to ask her questions.... ask her for a recipe, chat to her about stuff. Everything is just so unfair sometimes. Dirk said he is going to miss chatting to mum about cricket & current affairs. She loved having a chat. And there were always little "parcels" arriving in the post. Little things that she would see at the shops and we would receive with a little note saying " I saw this and thought of you" slipped inside. Jo & I will have to continue that gesture.  I know that there are so many people that will miss her too. The amount of messages we have all received has been phenomenal. She made friends with everyone. I imagine the girls lunches she was always going to, will miss her company - not to mention the catering she always did too !!
Anyway, next Thursday is her funeral. I have my bone marrow biopsy on Tuesday. Then the following week start the stem cell harvesting..... I'll write more as we get closer. At the moment, all I can think about is mum and how much I love her & am going to miss her.
But I am so thankful that I have the rest of my family. My dad, my sister & my brother and sis in law. My nephews & niece. We are lucky in so many ways. And no matter how far apart we are, our family love keeps us strong and close together. That is one legacy that mum has left us with..... family love and the strength to follow our dreams no matter how much distance it puts between us. Because our love for each other spans any distance and keeps us close no matter what.
I'll always love you mum...... 

99 dreams I have had……...In every one a red balloon……..

Day 99 of chemo today..... wow how time flies when you're having fun hey !!! 28th January 2012 was Day 1 .... now 98 days later I have results saying things are looking ok.... (I hope)
It's hard to stay positive when there has been let downs in the past. I mean.... I was so positive with the preliminary tests in the beginning. I didn't have cancer, that was impossible. Not me .... so now I'm positive, but hesitant to "jinx" it in case I have to find more energy to fight through another set back..... But... if I do.... I will !! Just don't jinx it.
The past couple of weeks have actually been relatively good. I've been enjoying work, been distracted by the focus of my job. It's the time of the year I get to do planning, budgeting and real strategy stuff.  I'm still not sure what the opinion at work is of my performance. They have been really amazing and patient with me. Allowing me to work around my feelings and appointments. I've tried to be honest and have made sure I've put in the hours etc. But you never really know whether it's enough.....The distraction from my health has been good for me. I've enjoyed it. I felt like I did working before diagnosis.
And then there has been the past 24 hours..... Zometa, Thalidomide, Cycloblastin & Dexamethasone all in 24 hours (as well as the daily antidepressants, aspirin to keep my blood thinner, muti-vitamin, heartburn tablet and calcium supplement)...... and until around 1pm today I wasn't too bad..... and then it hit me - POW!!!
I was out for a beautiful afternoon tea the The Duxton with some girlfriends..... and it started to get worse and worse.... jaw clenching... sweats... shakes (ohhh the shakes)...... loss of focus..... I think I did ok for the first hour but after that, I went downhill as fast as Ingemar Stenmark  !!
I had to make a fairly quick exit - say thanks and goodbyes and head home..... where I crashed !! I was wiped out as quickly as the little afternoon tea scones and finger sandwiches that were devoured only an hour earlier !! Which by the way were absolutely divine !!
And of course.... with a stint on the Dexa's comes that spending issue too.... GULP !!! I'd like to say that it's been under control, but today really made up for all the other little bits that have been creeping into the house via eBay, amazon etc etc..... A New Car !!! OMG - and I am soooo excited. OK so it's not brand new or anything stupid, but I'm still excited. Firstly I test drove an Audi A3 - but it just underwhelmed me.... a little disappointing. It was probably a great car, perfect for what we needed, a good price (yawn), practical, fitted the dogs in the boot, zippy and all that..... but it was just a car. It was boring (and it had scratched on the doors and no bluetooth !! Helloooo what car doesn't have bluetooth these days????)
So we drove up the road to a BMW dealership and had a look at an X3. It's got a few KM's on the clock, but drove beautifully, looks good and has all the extra's I was looking for ..... and it felt GOOD to drive. It had that something special about sitting in it.... that feeling..... it was nice. We got a good trade-in price for my old car so did the deal there and then. Now all I have to do is wait until Monday to go and pick it up !! Wahooo..... Now before you criticise the buying of a new car... we needed it. It was a decision that has been a few months in the making due to the fact that we have a 10 month old puppy that has grown into King Kong! The back seat of a sedan is no place for such bear.... yet alone two of them. So it's a practical decision, based on necessity. OK I'm now convinced... are you?? See it doesn't take long <insert cheeky grin & wink here>
Next week is another full-on work week. It's planning week with all of our Regional Managers in town from the overseas offices. Ordinarily a really good week. A lot of work and discussions followed by a bit of a laugh (assuming there's no bollocks to bust) and some dinners and drinking. I'm pretty sure this week will be no different, but the way I'm feeling may affect how my week pans out. Early start and late finishes are more of a struggle these days.

I'll also officially become an Aussie this week !! I have my citizenship ceremony on Thursday!! Only 23 years in the making...... I'm going to pledge allegiance to the Queen and give up my pommy vote for an Aussie one. I'll be able to vote for the first time in my life (at the age of 42 !!) how exciting ! I can't wait for the next election to actually have an opinion...... ha !!

Mum has also had a full on week - radiation this past week every day..... hopefully it will have helped and made some difference. She is still in hospital. She doesn't want to be released home until we know she's good to go. And there are still a few obstacles to get through before that time. We chatted today and it was nice to talk. I hope she wasn't putting on a positive, cheery voice just to try and convince me.... if she did it probably worked, because I thought she sounded good. We had tried to Skype but the connection was crap so we had to make do with a phone call. No visual !! One of the things you do when you are so far apart is always try to sound cheery so that the other side won't worry !! I've tried to be honest with mum because I think she has some idea of what I'm going through. Albeit different, she know's the feelings and the internal thoughts that run through your head constantly. So mum if you are reading this and really feel like shit, please tell me. I'd rather know. You have my blog to know when things are tough.....

Well, it's now close to 2am and although I still don't feel sleepy, I think I should give the pillow a good try and get some shuteye. I'll leave you with one last pic of a little splurge I made just prior to the car purchase.... Dirk, I hope you don't mind !! Love you baby !! I just couldn't resist and mum really liked them too.....

Ribbon For Bladder Cancer

I've also been on the cancer fundraising website and found some Multiple Myeloma ribbons etc. Just in case anyone is interested - they also have ones specifically for Bladder cancer (which is what mum has) Click here for a look.....

Oh yes and one last another thing !! I'm doing a fundraising morning tea at work for cancer (am I becoming one of those annoying types??) I figured a few cupcakes for morning tea would be a good thing. And if people wanted to donate to a worthy cause then why not..... if you can't make it you can still donate .... yes? click here....

OK that definitely it for the night...... I'm off to sleep now..... night night xxxxx