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