Every little step I take, you will be there ...... Every little step I make, we'll be together .......

So here's a quick update for you all on today's hospital visit.....

The next step is the Autologous Stem Cell Replacement.(ASCR) I went and met with my new haematologist specialist this morning. Dr Brad. Nice chap - very chatty, helpful and I didn't feel at any stage that he was trying to rush me or get rid of us. He explained everything and left us plenty of time to ask any questions. The nice thing about him was that he also specialises in Multiple Myeloma too. He is involved in the research and clinical trials associated with MM and has a keen interest in any of the research. At least this means he will have a vested interest in anything that happens throughout my treatment. He made me feel very comfortable about the next stage. We were also introduced to Tina the nurse practitioner who will be overseeing my treatment. She showed us around and went through the whole procedure. We made all the necessary appointments for bloods, chemotherapy, bone marrow biopsy etc etc.... and then sat and chatted more about what to expect.

The Stem Cell Process

It's all a bit daunting to be honest, but I did feel that I would be OK. I wasn't told it was all going to be fine. I was told it was going to be hard, a little bit painful and tiring. But at the same time, I was also assured that I would be under the best care possible and that they would be looking after me every step of the way.

So next week I go back in for bloods and a bone marrow biopsy. Then at the end of the month I start the chemo for the stem cell collection. This is where I will have a high dose of Cycloblastin (probably 2g) and will more than likely lose all of my hair..... I was offered a wig voucher ! - I will have to self administer growth factor injections for a few days before-hand and then will go in for a 5 hour stem cell collection, after blood tests to determine that the stem cells are at the right levels.

Once they have enough for two ASCR they will freeze the stem cells and send me home. After that, it's a matter of booking the time to have them transplanted back into me. This stage is still not 100% clear, there was so much information to take in on the first part that they didn't go too much into the next part. But needless to say, it's all starting and we're going ahead with it......


Well, that's all I have for now..... just thought I'd let you all know. Feel free to ask any questions......

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 !!

Up ahead in the distance ......I saw a shimmering light.......My head grew heavy and my sight grew dimmer..........

The number of times I've felt like my head has grown heavy and my sight got dimmer is now a blur.... one day blurs into the next these days. Some days are better than others and some days are just plain shit !!
BUT.... today is a good day !!..... and I'll tell you why.... 
I have just got back from seeing Dr Ben.... and he is "stoked" a good Aussie word.... but these are his exact words... "I'm stoked, actually I'm REALLY STOKED" and he was smiling !! Now a smile from a specialist Dr is a very rare occurrence. They are serious, straight faced, show-no-emotion types. They do not give you hope, but do not give you dread either. Just facts. But today Dr Ben was smiling, and was happy and he made me feel like I was his best performing student that he had at the moment !!
..... the reason...? my Kappa results...... you may remember that my last results were received after I had seen him, so I wasn't 100% sure that they were real as I hadn't had the chance to actually discuss them with him. I had gone from a reading of 144 to 29.8. And today's results were around the same at 31.9 !! All other readings were good too. Nothing to worry about. Calcium good, red platelets etc etc all good. He was SMILING !!!! He looks nice when he smiles... he should definitely do it more often !! So the next stage is now about to start.... this bit is still a little hazy. We sorted out my pills for the next few weeks and he suggested that I finish off the chemo Cycle (6) that I'm on, and then just run out of Dexamethasone and Cycloblastin, and after that just continue on with the Thalidomide. This is huge for me... I can't remember how it feels anymore not to have ups and downs from Dexa & Cyclo.... it will be interesting.
However.... before the drugs have the chance to wear off I get to go and meet the new specialist... Dr Brad. He will be doing the Autologous Stem Cell Replacement. This is where I'm still a little hazy. Dr Ben spoke briefly about the process but both Dirk & I were still a little lost abojtit all. I guess when I meet Dr Brad things will be a little clearer. Dr Ben talked about the day long chemo infusion at the start of the process, and the chemo that I go on, on the lead up to the harvesting of my bone marrow from my blood. But I'm still not sure how it all happens exactly. And even less clear on the timing if how it all happens. But for now, I don't have another appointment with Dr Ben. It's all over to Dr Brad until I hear otherwise. The appointment is on June 8th with him. It will probably be 3-4 months before I see Dr Ben again..... this is it..... the beginning of the next stage. Watch this space.....


And so... to the boring stuff that makes up the better part of my life.... day to day grind !! The recovery from our regional manager's week has been looong. In fact it hasn't really happened yet.(the recovery that it) I'm on annual leave as of Friday, so this is when I will finally sit back, sigh and take a break. This week has been as full of meetings and deadlines as last week. And I haven't actually met all of them. I've managed to make it to work on time (by 9am most days) managed to attend all of the meetings. But by attending all the meetings, I don't get to do the work required in between. Aaahhhhh the joys of management I guess !! Tomorrow is the last day to complete anything that needs to be done before next week. And if it doesn't get done..... too bad !! I'm out of there. Off to Broome and will be basking by the pool drinking cocktails and riding camels at sunset before buying pearls and not worrying about work emails or deadlines for five whole days !!! We booked this holiday last October. When cricket season had just begun and we were looking to the next free weekend we would get ..... long before Christmas, cancer & chemo...... a lifetime ago !! And it is now only a few short hours away.... and I must say... I'm a little bit excited !!
So apart from that, not much more to report at the moment. Good news all round from this side. I'm off the Dexa's today so have just about fallen into a heap now. Completely exhausted and about to pass out. So this will be a short and sweet update. Hopefully tomorrow will be productive enough to get as much finished as I can before we leave. Our trusty house sitter will be in to look after our precious pups. Without him, we just wouldn't go away anywhere..... My Thalidomide are now beginning to kick in so I will sign off before I gabble on about nothing even more. Good Night all xxx

We've golden soil and wealth for toil....... Our home is girt by sea..........

Aussie, Aussie, Aussie........ Oi, Oi, Oi !!!!
And so... after 8220 days..... 1174 weeks...... or 22 years, 6 months and 3 days I have become an Australian Citizen.....
It was all a bit of a rush, but then the whole week has been like that. Since Sunday I have not had the chance to scratch myself. At work this week we have had a regional managers conference. Manager's from all of our international offices have been in town. (Brazil, China, Kazakhstan, Russia, Turkey, Indonesia, UK, USA, Mongolia, South Africa & the Australian management group) I really struggled Monday & Tuesday - had the shakes and the after effects of all my drugs plus the Zometa infusion on Friday running through my system. In fact when I look back at the early part of the week now, it's all a bit hazy !!
I also picked up my new car on Monday too. Fantastic !! And the more I drive it, the more I like it. I was quite sad to say goodbye to my 3 series - it was such a beautiful car to drive. But having said that I am now suitably impressed with my new one...... the dogs also got their first run in the car on Tuesday - well seeing as the main reason for changing over the vehicle was for their benefit we thought we'd better test run the boot !! - all was (of course) perfect. They jumped in and were contained beautifully. Maverick stood proudly looking out the windows and Charlie lay down under Maverick's feet and "tried to" relax.
As the week wore on the effects of the drugs gradually began to calm down with just the daily effects of the nightly Thalidomide to content with..... a few jitters, mild shakes and a feeling of being whacked out whilst on the equivalent of 10 red bull's. I managed to make it into work pretty much on time every day (by 9am) and stayed the full day each day too.
Thursday morning I got up at 6:30am and took Dirk's car to be detailed, north of the river. Then picked it up at 5pm, rushed home.... as much as you can in peak hour traffic. Quick change before rushing back out to Melville Civic Centre for my citizenship ceremony. When we arrived, the Mayor greeted Dirk immediately - recognising him as one of his former students.... he was Dirk's maths teacher from school !! Nice chap with a big grin and quick wit. I liked him. We spent the next hour watching as four groups of about 15 people each group voiced their pledges to Australia and became Aussies. I was in group two. I'd decided to do the pledge with "God" in it. (You had a choice to either leave Him out or have Him in..... I decided to leave Him in.... no reason really, I just did. And with the way things are at the moment, I think a girl needs all the help she can get, so if God is going to help me, the least I can do is acknowledge Him !!)
We were asked if we wanted to stay for a cup of tea.... however we had a work dinner. I had cheekily asked if Dirk could join too as I really wanted to share a dinner with all the guys from work, but also wanted to celebrate with Dirk after the ceremony. My MD was very happy for Dirk to come along, so we dashed out straight after a quick pic next to the flag with the Mayor. Arrived at The Old Swan Brewery in time for a celebratory glass of NZ SSB - much more appropriate than a cup of tea in my mind !! and once everyone had arrived we sat down. We had a great night. At each course, we all moved round the table four spots so everyone had to talk to new people. I really enjoyed myself. Food was excellent too. Although far too much !! We got home at midnight.... I popped my Thalidomide and crashed out.
Friday we finished off the week with a few discussions and final meetings. Then headed to UWA for a Micromine Soiree. I was tiring BIG time by this point. The week was beginning to take it's toll. I managed to enjoy a glass of vino before deciding enough was enough..... so I bid my farewell's to the international visitors and made a quick exit. It was Friday.... which means only one thing in our house..... Pizza night !! But it was an ordered one this week. We just couldn't face cooking. It arrived in the obligitory 30 minutes. and 30 minutes later I was asleep..... lights out.... stick a fork in me.... I was done !!
Today we managed to get a few jobs done. It was a gorgeous day, sunshine, warm with just a light breeze. We fixed the fence, stained the outdoor table & chairs and Dirk mowed the lawns. Now we're watching the footy. I'm happy because the team I tipped are winning, unfortunately I tipped against Dirk's team, so he's not happy !! I guess you can't win them all.
It's Aussie Mother's Day tomorrow. Dirk's off to his parent's beach house to help with an annual clean up. I'm off for Dim Sum breakfast with a girlfriend .... I think I won on that one !! haha. Not sure what else we'll do. I started Cycle 6 today so I may have to play it by ear..... Blood tests again on Monday in time for a visit to Dr Ben on Wednesday. I'm interested to see what he says about my results. Hopefully he'll be as happy as I am.

Late news .... just in..... I've just found out that my mum is coming out of hospital today !! Yay, yippee... I am so pleased she's headed home. And in time for Mother's Day too !! I'll have to make a call to dad and make sure that he spoils her on our behalf :-) Now the road to recovery starts again for mum. This time it will be successful !!! Happy Mother's Day for tomorrow mum. Love you loads xxxxx
One last thing before I sign off.... I'm having a "Biggest Morning Tea" for cancer fundraising at work on 25th May. It's at work so hopefully a few work colleagues will come and share a cup-cake or two. But if anyone wants to donate you can do it here...

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

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 walk into an empty room…..And suddenly my heart goes boom…….It's an orchestra of angels…….And they're playing with my heart…….

OK... OK..... it's here.... stop with the whinging about the next blog entry !! I was waiting until after the do/soiree so I had something to talk about !!

"At least the weather has held out"

..... and what a night.... we LOVED it. Had a fabulous time and enjoyed every moment. It started off with a very busy Saturday. Dirk was up early with friend Hughy to prepare the backyard and move furniture etc. Saturday for me was the start of Cycle5 (15 weeks in already) so I popped all my pills and rattled around while I got ready. I had a 10 am hair appointment (tough I know) but booked 6 weeks ago (before the engagement party was booked in) a girl can't go into the evening with scraggy looking hair !!

"Erm.. look behind you Dirk"

My hairdresser was a little concerned as my hair is getting very fragile and thin :-( so she went gentle on the bleach !! For those of you that thought I was a natural blonde.... oh shit... my secret is out !!! haha

So once that was done, I nipped to the shops for some last minute bits and bobs and to pick up the cakes..... then back home to finish the setting up. Dirk had done a great job putting all the lights around the garden and in the trees. He'd cleaned the whole area and then went to get the booze.

and then the heavens opened...

Then it was time to get ready.... put my frock on, a bit of war paint. As we were lighting the candles on the deck, Dirk commented that we'd been lucky with the weather holding out and at least it hadn't rained !!! DERRR!!! I told him to look behind him.... it was too late... jinxed. And then as people started to arrive the heavens opened !!! Fortunately it only rained for an hour. Nobody seemed to phased by it and within the hour the house was filling up and the noise levels were building. We had bar staff and catering staff working so Dirk & I didn't have to worry about a thing.
It was so good to be able to see all of our friends. Some we hadn't seen for a while. The buzz was just amazing and happy and I struggled to stay and speak to anyone for longer than a few minutes before having to move to the next group.

The food came out from 7.30pm and it was absolutely fantastic. I think everyone liked it. And I hope there was enough to go around.
 Tapas Frittata, Italian chorizo, marinated olives, garlic mushrooms, grissini

 Wild Mushroom Arancini + w sticky tomato relish
 Peking duck, mandarin pancake, cucumber, spring onion + hoi sin 
 Crisp pork belly, pomme puree, Asian caramel
 Blue swimmer crab w lemon parsley + chilli
 White-cooked chicken rice paper rolls + hoi sin sauce 
 Siamese Kedah Chicken A fragrant lemongrass & galangal curry 

The Candy Bar

The drugs had well and truly kicked in by this time. I was ignoring all feelings and taking lots of champagne to forget about it all ..... I figured I'd worry about the side effects on Sunday.

And so the night flew by.... music... laughter.... bubbles..... I can't remember a time when I wasn't talking, singing or drinking !! Dirk ended up making a quick speech - thanking everyone for coming along and letting everyone know that we were determined to get through this year so we can focus on our future (sounds like a plan to me) He is just gorgeous.
At around 10pm ish there seemed to be a slight shift in the mood for the night.... a few drinks had kicked in and I could see some glazed looks in the eyes of my girlfriends. One hint that that things were taking a turn was the news that driving home was now not an option and they were going to worry about cars tomorrow.... haha... I love this !!
The music got cranked up and the dining room got transformed into the dance floor !!
Note to self.... order more champagne next time..... we ran out at about 10:30pm. I had thought that 24 bottles would have been enough, but it was obviously the drink of choice so will have to remember that for the wedding.
All in all we had 70 of our nearest and dearest friends. Our lovely neighbours also joined us as well as some very special friends from Bunbury. Friends that have been a part of our lives from the past 20 years as well as friends that are a part of our lives right now. All of Dirk's family came and shared the celebrations too. These people are so special to us both.
I missed not having my family around (obviously) but I made sure that I had a champers on their behalf.... maybe another reason that we ran out !!!

Our local celebrity attracted photo
opportunities for our guests!

I was also overwhelmed by the presents that people bought for us. Such gorgeous gifts and not one that we wouldn't use or like. We certainly have friends with good taste.

So after a night of singing, dancing and drinking, it was 4:30am before I managed to take my night time Thalidomide and take off to bed.... Things were a little hazy by this time. I had also opened my favourite bottle of Henschke to top off the night (not sure I was really appreciating it by this time but I thought it was a good idea at the time) I made a drunken attempt to call mum in hospital in UK and my brother (out to dinner with friends) and warned my friend who was not driving home, that I had 1/2 hour before the effects of the Thalidomide would take me out of our conversation and off to bed. Bang on time I was in bed 30 minutes later... Dirk said I was snoring, but I think not !! I don't snore !!!

And so to Sunday and the clean up..... Dirk was up at 8am ( I missed that wake up call) and started to clean up the outside bottles and area. Luckily the bar staff and kitchen staff had done an amazing job so we didn't have to do too much. Just what was left over from 11pm onwards. All the glasses had been washed and the kitchen was spotless. I managed to rise and shine around 10am. First thing to do was have a coffee !! Some Vegemite on toast and more pills. (Dexamethasone) Then water, water, water. I needed to flush out my liver and re-hydrate. By midday Dirk and I had done pretty much most of the clean up and we were beginning to flag a little (Dirk especially) We dropped off a friends car to her place and returned home to relax. We spent a couple of hours opening our gifts (fantastic as I said before) and I watched some telly while Dirk went and had a sleep.

Lasagna for tea - we needed some comfort food ! and then as quickly as it started the weekend was over..... sigh......

Monday was upon us far too quickly... I struggled a little Monday morning getting up. Managed it into work full of pills again by 10am (ish) I had forgotten that my appointment this week with Dr Ben was on Tuesday so had to rush in to get my bloods done - which I should have done Friday. Managed to get through the day without a hitch and was actually the last one to leave after 6pm in the evening. When I got home, Dirk had tea started and a glass with ice ready for a vino for me. I quickly declined, but after seeing the glass waiting.... succumbed to just a little one (so weak) I know I've said it.... but he truly is amazing. Dirk was shattered and took off to bed pretty early last night. I didn't get to bed until around 1am..... another drug effect. Even though I was exhausted, I just couldn't unwind and feel sleepy. The Thalidomide usually helps, but until I actually fall asleep sometimes it's hard to actually reach that sleepy place.

We have a public holiday tomorrow. ANZAC day in honour of all the diggers and Australian & NZ veterans that have fought in wars over the years. It's a great public holiday and Aussie's get very patriotic. I like the spirit. Something that we pommy's don't quite do as well in UK.

I'm working from home today so I can rest in between working a little easier. I also get t get more work done without as many interruptions. I have a mound of work to do so hopefully will get through it without having to work tomorrow.
I'm hoping to be able to catch up with a phone call to mum later. Then it's my brother's birthday tomorrow so will try and contact him at some point too. I think he's in London working so will attempt to call throughout the day. If I'm lucky, his present will have arrived at his house for when he gets home on Thursday. Hope you like it Jim !!
Now that all the fun and games are over it's back to the daily grind. We have a getaway to look forward to. Can't wait for that.
I have some pretty big work weeks ahead, so will have to play it by ear on that one. My biggest worry is the early morning starts. They are pretty tough for me. We have a week of regional mangers coming into HQ at work. Hopefully I won't have to present too much as I'm not sure how I'll go.
I'm good at faking it for the odd day or two but a whole week could be an issue. People tell me every day how well I look. It's really nice to hear. But sometimes I just want to say "fuck off I feel like shite"  ...... but if I'm trying to fake it and convince everyone I'm ok then how would they know?.... you just can't win can you !!!