Tell the bar that we don't want no glass .... Just bottles and i'm buying everybody one each ........ Yes so bring the Veuve Clicquot ....... D about to hit the big 3 0 ..... Party like it's Carnival in Rio ...... Life's too short, Danny Devito ...... Yo, we live, we die, we give, we try, we kiss, we fight ....... All so we can have a good time .......

Hellloooooooo !!
For ten years !!!
It feels like it has been that long since my last post. It's funny how caught up in life I have once again become now that the drama has passed. It's like it never happened. Last year is definitely just a distance memory. I've even stopped saying things like "just think, this time last year ...." It briefly comes to mind, but is just as quickly dismissed as more important things come up.

Vancouver

Life is back in the fast lane. I have started traveling again (for work) Had a quick round-the-world stint to Vancouver - London (incl. a quick weekend at "home") - Dubai - Perth. Although the final legs took their toll on me and I came home with sore throat and head cold. But other than that all good. Not to mention the new suitcase I had to buy so I could fit my purchases in !! Note to self... buy a bigger suitcase for next time and take nothing !!

Dream situation !!

I have to have a rant though.... this morning I was on the way to work and this cyclist was all over the road. Weaving in and out of cars.... when he felt like it, he was on the footpath, when he didn't he was on the road.... and then, because my wheels went over the short starting point of the bike lane (literally a 15M long bike lane) he whacked my car roof and abused me. Needless to say my middle finger went straight up. My gutter mouth shouted abuse at him and I carried on. But it's one of those moments that leaves you fuming. There were so many things I wanted to shout at him. Like "make up your mind if you want to be a car, pedestrian or cyclist ...... you twat" or "you look like you've sharted in those ridiculous bike pants..... loser" but the one thing that cyclists have over us is that they can be off pretty quick and they all look the same so you can't report them.

Rant over.
 It appears I might be aging !! WTF ?? Yes how could that happen? I ask myself the same question every single day..... for the past 7 months I've had a pretty bad case of tennis elbow. Now for those of you that know me, you will understand. I mean, if it wasn't for my passion for school and work I would have been a tennis superstar !!  And my prowess on the tennis court on a regular basis has left me with a poorly elbow. I've been on anti-inflammatory pills every day, tried acupuncture, massage and physio, but nothing has helped. Dr Ben sent me for more blood tests and x-rays but nothing. So he referred me to a rheumatologist. I have now had further blood tests, another set of x-rays and an ultrasound. And guess what?.... it's tennis elbow !!!! I also have a touch of osteoarthritis in my hands, which is basically bought on by age !!! $1000+.... thanks for coming !! I could have looked in the mirror, checked out the crow's feet and given that diagnosis.......
On a brighter note though, my blood tests continue to be amazingly normal. Dr Ben couldn't stop grinning at my last appointment. I think I'm actually his poster child !!

So going backwards in time again, my work trip had some amazing moments. I was able to spend a weekend at "home" with my bro, sil and family. Unfortunately dad was away so we had to have a party at his house without him. I was able to catch up with friends who couldn't make it to our wedding in Jan. People that I grew up with and also helped mum in her last few months. It was also the anniversary of mum's death while I was there. I was soooo nervous about getting to England. I hadn't been back since before "everything". Last time I was there was Dec2011 when I surprised mum with a visit because she was sick. I was scared about the feelings I would have when I got there. I spent the first two hours of the flight from Vancouver to London crying under a blanket because I was petrified. But when I got there it was all good. It was not scary, it wasn't awful, it was nice to be home. It didn't feel strange..... On the Sunday we went to mum's "memorial place" it's not really a grave, and besides I could hear mum in my head saying "Don't know why you're going there, I'm not sitting under the ground waiting for people to visit !!" But I wanted to put some flowers there, and my sis had asked me to take some tulips, so I did. It was a gorgeous sunny day. The kids ran around the church gardens and it was happy.
So after a few sunny tears, we decided to hit the pub for some lunch. Perfect and just what mum would have wanted us to do !! After that it was back down to London for more work.....
.... and after that I flew home... via Dubai !! OMG what a place !! It was amazing. My besty lives there so she picked me up and showed me around. I have never been to a place like it. The shopping... the buildings.... the service !! LOVED it..... needless to say my new suitcase took more of a beating !! If you ever get to go to Dubai, you must go out to "Brunch" on a Friday..... I can't tell you any more...... just do it - you'll thank me.
Next stop is our honeymoon !!! I cannot WAIT !! 2 weeks in Koh Samui..... sun....sand and Thai food - what more could a girl want. Not to mention a wedding too. It's going to be amazing, I just know it. It cannot come soon enough.

 

But in the mean time, it's back to work...... as I type my hands are aching and my tennis arm hurts................................... but that's just old age !!!

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

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

<insert 3 week break here>

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

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

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

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

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

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

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

Some of my old UK cravings

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

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

Should I carry on my blog?

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

Blossoms in our garden- Spring!!

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

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

Just a little something for the pain ..... Hospital food getting you down? ..... Honey now I'm not one to complain ....... But this hangin’ around ...... Is wearing me out .....

My New View
I can even see MICROMINE !!

This is why I hate iPad for blogging !! I just wrote a complete blog entry and pressed save and it all disappeared !!! AAARRRGGGHHHH
I will try again.... At least I'm in a position where I have all the time in the world to write !! Still frustrating though... especially on the iPad !! Which is why I am now using a laptop with a proper keyboard :-)
I can't remember what I blogged before so will have to try again - it is now 3 hours since I lost the last blog so I think this one will be completely different. The only thing I did, was make some quick notes on what I'd blogged about, so the subjects will be the same, just different !!
These are my notes.... I'll try and talk you through them.....

• View to work
• Eyesight
• Needles
• Plastic food
• Tami flu
• Visitors
• Neutrophils 2.44
• C Reactive Protein 26 was 10 !!

Anyway... to get you up to speed.... Monday I had my bloods done with Tina (my primary Nurse Practitioner in Haematology Care Centre HCC) All was going really well and she was extremely pleased with everything. Neutrophils were now 2.44 and my C Reactive Protein (which shows if you have an infection or not was at 10 - it was at 84 last time I was admitted to hospital and <5 is normal) I mentioned I'd had a bit of a cold / sore throat but that is seemed to be subsiding and that I was feeling better. She did a few tests to see if I had a fungal infection or anything else that could be easily detected and we left happy. Dirk was free to go back to work for a few hours and I was happy to hit the couch and relax with the pups. After a couple of hours I started to feel a bit chilly so cranked up the heater. I must have had it pretty high as the pups slunk downstairs and lay in the cooler climate of the hallway !! Me however... I was still freezing. I grabbed a blanket, put the heater up to 27C and tried to get warm. By 4pm I was shivering and my temperature was 39C.... Dirk got home and we decided it was time to head to Emergency. We had to wait around 40 minutes to get through Triage.... no "Get Through Quick Pass" this time. It was in line with all the other sick people.... like the guy in front of us that had a stiff neck, or the girl that had a sore tummy. At least when I got to the front of the queue, they whisked me off to a secluded room so I didn't catch a sore neck or tummy !!!! 

New Hospital - PMH

I was seen by the same HCC oncall Dr as before and she remembered me. This was a bonus as I didn't have to go through everything all over again. I was taken to the Emergency ward and X-Rayed. Then they attempted to put a cannula in.... this didn't go too well. I had a student practicing on me. Normally this wouldn't bother me at all, but I wasn't feeling the best and after two blown veins I burst int tears and he decided to get his boss / Dr.  The 3rd attempt was fine. Then they wanted blood too - but not from the cannula.... that was for anti-biotics in. So the came to take blood. It now became apparent that my veins were beginning to collapse at the 1st sign of a needle. Apparently this is common with chemo. Not permanent. I also had to do a pee test. My temp spiked again at around 10:30pm so I was given seven blankets and two panadol and Tami Flu anti-biotics. We decided that Dirk should go home at around midnight as all we were doing was waiting for a room to free up. After he left I was taken to the Emergency Obs ward and at around 2am I was admitted. Not to the haematolgy specialist ward I was in before, but apparently the next best one. And at least I got my own room. Since then, no-one has been allowed in without a mask and gloves on. 

Tuesday (yesterday) was pretty much the same... started the day off with spike temperature and swapping between shivers / lots of blankets / panadol / sweats - Every 12 hours intravenous anti-biotics, more bloods - I've had 9 blood tests in 24 hours. But by 8pm last night, I started to feel better. 

Today I had my last lot of panadol at 7am and since then have not had to have any. I'm still not allowed to go home (booo) they have to wait for my blood cultures to come back which take minimum of 48 hours !! 

Another View - Looking back towards home

But my nurse (Tina) came up from HCC to visit today, we had a good chat, and she made me feel better. Dirk has been in morning and night. And today I've been able to pick up my kindle and read - although the geekster's I got two months ago may need to be updated again very soon. My eyesight is deteriorating fast !! I'm hoping it's a temporary situation from the chemo, but I'm not sure. I'm still seeing blurry letters when I read and have to have my font on large !! WTF !!

So that's pretty much where I'm at to date. It's Wednesday evening now. Dirk has bought tea in (YAY!!) We're having Vodka Chicken Penne (thanks Jo) because the hospital food is unbearable. Soooo bad. Worse than school dinner!! - yes that bad - although if anyone is looking for a way to lose weigh fast - hospital is the answer !! 

Hopefully I'll be home tomorrow and maybe over the weekend will be able to have visitors too. I'm clear of being neutropenic now, I just have to be cautious. Which I will be. Anything to keep me out of hospital......

Closer than my closest friend.... To celebrate the good times ......To help me through the hard times ......To bring me down to earth ........Remind me what's important.......

The past 2 days have been better. After my trip in to hospital on Wednesday I was given fluids. My results showed I was almost neutropenic. Which is what we are pretty much expecting / waiting for. After the fluids, its amazing how much better I felt. Even though I'd been drinking 2L water every day, it appeared I was on my way to dehydration.
My sister arrived on Wednesday evening from NZ. And all of the sudden I was feeling a whole lot better.
We've had tears, laughter and lots of "mum-moments" as I've come to call them..... Those unexpected moments when you remember something "Gerry would have said /done" and you burst into tears when you realize she's not here.....
Anyway.... It's been fab, and an absolute morale lifter having my blister here.
We're off to the hospital again now. Had a small scare last night when my temp spiked to 37.6C ... But we realized that having the electric blanket on boost before slipping into "fresh sheets" had an impact on the results !!! After I switched it down to 1 ... Temp dropped to relatively normal......
I'll be asking for more fluids again. It's so much easier than having to drink it yourself !!! And hopefully I'll be sent home for the weekend...... But we'll have to see what Tina says......
On another note ..... I'm nearly at my "target weight" from my operation last year !!! Not something I'm even thinking about, but noticed when I jumped on the scales this morning..... Heh heh..... Not all bad see?
Xxx
Quick update .... In hospital now.
Temp is slightly up 37.5C bit we're going to see what it is after fluids. Blood pressure was low too.....
Waiting for bloods to come back.
Tina says if I have to be admitted, I'll be in for about 4 days..... They all (the nurses) place bets on when you get admitted !! Lol I want in on it too !!

.......Love is the answer....At least for most of the questions in my heart..... Like why are we here? And where do we go? And how come it's so hard? ...... It's not always easy and Sometimes life can be deceiving....... I'll tell you one thing....... it's always better when we're together.....

Looking forward to seeing my sis on Wednesday....

I'm in the middle of a Jack Johnson-a-thon .... and so I guess, feeling pretty alright so far too.

It's Sunday.... Thursday was implant day and my days have been relatively good. If I jinx myself by writing the following then <insert "F-style" curse word here>

Anyway here goes.... so far, no temperature, the anti-nausea drugs are keeping things at bay, no diarrhoea... the worst so far is the irritating Dracula's neck jewellery (Thanks Nigel - liked that one !!). But even that is beginning to settle and not be as annoying.

OK Coldplay-a-thon now..... JJ was getting a little melancholy for me......

I've been very careful so far. Bucket loads of anti-bacterial hand wash, lots of water, hydrating fluids and no contact with anyone or thing. Although I have managed a couple of trips to the park with the pups. I've also been sleeping well(ish). The olympics have helped too. Live streaming on the iPad on the middle of he night is great. I'm back on the Dexamethasone so that may explain some slight insomnia. 

I'm now on a neutropenic diet too. And it looks like I'll have to stay on this for the unforeseeable future. As I now have no immunity I won't be able to combat food bacteria. I'll have to start from scratch with my body. One of my biggest disappointments would have to be that we will not be able to visit "Sizzler" for the next year !! Oh woe is me..... how will I survive ?? !! No salad bar or all you can eat soft-serve is allowed to pass my lips !!! Looks like it will just have to be fine dining establishments and home cooked delicacies. 

I have a bowl of drugs I have to take every morning..... 

• Dexamethasone - Anti-sickness 2-3 days after chemo (all good now)
• Metroclopramide - Anti-sickness 20mg 2 tabs up to 4 times per day
• Pantoprazole - Antacid (and for nausea) 40mg 1 tab per day
• Fluconazole - Anti-fungal 200mg 1 tab per day (for the foreseeable future)
• Valaciclovir - Anti-viral 500mg 1 tab per day (for 3 months post transplant)
• Filgrastim - 300mcg Injections daily in evening D+5 onwards
• Gastrostop - 2mg Once it starts.... max 8 per day !! eeuww

I have my first check up appointment on Monday morning. I'm hoping Tina (my Nurse) will be very happy with me. 

My beautiful niece - who's birthday it was yesterday

And so back to the couch and the relaxing.... my Blue boys are about to start. I haven't picked them to win and after the WCE performance yesterday I'm hopping for some winning vibes in the house. I must also say that as my first year as an Aussie I'm a little disappointed at the performance of the number of Olympic Gold's for Australia!!! Go Team GB !!! Just saying......

Oh yes one last thing.... we've booked our wedding venue. Looking forward to Jan wedding......

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 !!

I'm working on a dream ......Though trouble can feel like it's here to stay .......I'm working on a dream ....Well our love will chase trouble away.....

I really don't know how I would get through all this without Dirk. And I'm not sure I can put into words how much I love him and appreciate how he has been there for me. I know if the tables were turned I'd do the same for him (I'm not sure I'd be as good as he is though) ..... but it's not the other way around. And at the end of the day he is putting up with everything.... and not complaining, and doing everything & anything for me. And his support has been relentless since January. For any carer out there... I cannot begin to think how hard it is for you. Thank you seems so little for what you do...... BIG love to you all. But ALL my love to MY carer. (he won't like this mushy stuff, but it has to be said) I love you Dirk......

I finished work on Friday..... I won't go into it too much... needless to say, I may have overdone the "farewell vino's". Maybe not the best idea, but done now. Apologies have to go out to my work friends that had to see me that way !! (hopefully by the time I get back to work it'll be forgotten !! ) awkward !! But I had fun... so that's what's important right? 

Yesterday was D-3 (the format my hospital use for transplant day calculations) Transplant day is D 0 then D+1, D+2 etc etc. until you are discharged. It was an easy start to the week with just the blood test. I managed to get sorted after that, with shopping, washing and last minute house stuff. Knowing that I probably won't have the energy or strength to do much. I wanted to get my sister's room ready and looking nice. I also needed to buy a heater for her room so she's not too cold. I'm really looking forward to seeing her, and I know it will also help Dirk. Just having the extra support here. He will be able to go out and even go back to work without having to worry about leaving me alone. So got that sorted, and then we went out for a last "drug free" dinner.

Today (Tuesday) was CVC (Central Venus Catheter) and Melphalan (Chemo) day. I was a little nervous about today. I guess knowing that someone was going to cut into my jugular and then pour in a drug that will make me feel like shite will do that to you !! So I put on my colourful jumper and even made up my face to help make me feel happy and not sick looking (it may sound vain, but it makes me feel happier to look healthy) and we drove into hospital. As always, the nurses were great. I was taken to theatre "recovery" for the CVC to be fitted. It's done under local anaesthetic - not the most pleasant experience - I felt most of it. The needles going in to such a soft area was probably the worst feeling. Then all I could feel was the pressure of the wires and needles. But it was bare-able. Afterwards an X-ray is done to ensure the CVC is situated correctly, then I was wheeled back down to the Haematology Care Centre (HCC) where everything is done for Haemo patients. I'm calling the CVC my new jewellery, as it dangles around my neck, and I'll be wearing it for the next couple of weeks until I'm discharged.

Dirk was waiting for me with a muffin, as I hadn't eaten anything yet. I managed to scoff a little of it before I was prepped for the infusion. To stop the mouth ulcers and probability of Mucositis they give you ice to suck before, during and afterwards. My nurses told me to continue for at least a couple of hours afterwards too. If there's one thing I've learned so far, it's to listen to the nurses and Dr. They go through this everyday, with a variety of patients and situations. They Know !! So I have listened to what they've told me so far and followed it to the hilt. 

The day was relatively painless and we returned home around 2pm. Mav had decided to eat his bed !! lol... we had left both dogs inside as it was raining badly and we didn't want to get home to wet dogs !! We knew they'd be a surprise at home, we just weren't sure what it was going to be.

I continued to eat ice until just before 4pm. Then I called dad to let him know about my day before I fell asleep until 7:30pm. We had some tea and watched some TV and now I'm in bed... they also put me back on the dexamethasone (hence being awake still at 12:45am !!) but I'm also paranoid about how I feel... silly I know, but I'm also watching the Olympics so it's not all bad !!

Tomorrow is a "rest day" and I intend to rest before the implant on Thursday. Drink lots of water and stay away from germs !! Fingers crossed all will be un-eventful.....

Once again, thanks for all the messages, posts and emails. I know I may not have responded to all of you, but thank you all the same. I've had some great emails from people I haven't spoken to for a while, it's great to hear from them. Also from people I don't even know. I'm sorry if I haven't responded yet... I still intend to. But I hope this blog helps in some way to anyone that may not have the support I have, or is just interested in the whole process....

Anyway, as usual this is a late night entry, which means, when I read it again in the morning I find spelling mistakes and incorrect grammar (which I hate) and sometimes cringe at what I've written. But I guess that what happens when you share your personal shit with the world !!

Night, Night, God Bless xxxx 

The title is dedicated to Dirk - "Working on a Dream" by Bruce Springsteen.

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

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

Winter Beach Day

First time in the Ocean

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

You walked into the party like you were walking onto a yacht ...... Your hat strategically dipped below one eye ......... Your scarf it was apricot .....

..... I tried to ignore the fact that it was coming out.... I wore one of my hats to work ..... I even went across the road to the pharmacy and purchased some new head gear......but by the time I got home from work I was covered in hair..... I felt like I'd been dipped into a hairdresser's bin !! I had fine little hairs all over my face and up my nose ..... and so, as soon as Dirk got home.... the clippers came out and off it went ..... and I laughed. 

And when I looked in the mirror .... I cried..... The fun was over very quickly. It was definitely real now. There was no denying I had cancer. It's not like I was about to make a movie like G.I. Jane !! (I wish) I had a bald scone, and it wasn't going to change anytime soon.

I got Dirk to take some pics (we even recorded the head shaving for posterity!!) he was desperately trying to make me feel ok. Eventually it worked and he had me laughing.

The pets didn't notice at all.... I was still mum to them and all they wanted was attention and cuddles.... nothing was any different in their eyes - you've got to love that about cats and dogs, their love is unconditional and it's totally irrelevant how you look or how much you yell at them for eating your best plant while you're at work. You yell at them and tell them NO!! and they come and put their head on your lap and love you even more than before..... 

One thing that is annoying about your hair falling out is that you don't have a choice about the day..... mine fell out on the coldest night of the year so far !!! It was only bloody 2C Wednesday night - and for those of you saying "pah .... meh .....that's warm compared to blah... blah... blah...." It's bloody cold in Perth when your house is rigged up with air-conditioners and not central heating !!

Thursday morning came and once again, the shock of what I looked like as soon as I looked into the mirror ...... more tears - but there is a bright side...... the shower feels great on a bald scone and  my "getting ready time" has been cut by half !! I was ready in about 15 minutes !! fab-ness !! Hat went on and off I went. 

And here's the amazing bit.... when I walked into work, one of the guys on my team had shaved his head too.... he didn't want me to be the only one walking around the office with a shaved head !! Some people are so amazing. (Although I hated to point out that there is also a bald-headed guy in our team that we've just hired !! oops !!) 

I haven't quite got the confidence yet to walk around without a hat. I'm happy to take it off and show people, but not yet at the point of leaving it off. 

The comments from my friends and family have been the best though. By over-sharing on Facebook, I've been inundated with gorgeous comments. This really helped me over the past two days. 

We shaved it to a #1 all over, but even the tiny short hairs are still falling out. I imagine it'll be smooth all over before it starts to grow back. But hopefully by then I won't be bothered one little bit about it.

We're off wig shopping today. The hospitals in WA give a wig voucher to cancer patients. So I'm off to try a couple. If I think I'll wear one, I'll get one. If not, I'll return my voucher and not bother. I'll just have to see how it looks and if I think it'll make me feel better or not.

Luckily though.... 23C today and sunny !! 24C tomorrow too.... got to love Perth in winter !!

Tell me how I'm supposed to breathe with no 'hair' .... Can't live, can't breathe with no 'hair' ....

It's falling out !!! (My hair) Today.... as in, right now !! Yesterday it wasn't... today it is. In clumps too.
I was prepared for it..... just not today. I knew it was going to happen. I just thought it would be after the next lot of chemo... and I wouldn't be at work ! I'm not really quite ready today... I was preparing for 2 weeks time. I haven't had chance to practice my bald look yet. Hopefully it won't take much practice, especially as I only have overnight now to get it down pat !! eBay might take a hammering tonight.... get your hats online eBay sellers.... I'm coming !!! Hat donations also welcome peeps....... Oh well..... here goes I suppose. Now I must go out and get that Hermes scarf !! ..... and the clippers - gulp.

Piet Mondrian - Art Gallery of WA

Anyway... I am drug freeeeeeeeeee!! I can't believe how different I feel compared to the past 6 months. I'd really forgotten how it felt. In fact it's been nine months since I felt like this... in fact, I've not been this weight and felt like this. Nine months ago I was "post surgery" and still losing weight. So to be able to enjoy the way I feel at the moment is quite a nice feeling. I'm still tired. I've been sleeping a lot. But during the day I feel good. I went back to work yesterday for just two weeks. This is how long I have until the Stem Cell implant happens. Yesterday Dirk & I went to hospital to visit my nurse practitioner - Tina - She went over the whole process of phase two. And I have to say, she is pretty amazing. We also bumped into my Dr - Dr Brad. He was saying how well my collection went. To understand how the collection calculations work I have copied the following:

"How many stem cells do I need? Over the years, a number of studies have been completed to determine the number of stem cells you need to safely undergo high-dose therapy. The number of stem cells is quantified by a special laboratory technique called “CD34+ cell analysis by flow cytometry.” A small sample of the stem cell collection is tested for the number of CD34+ cells in the product. We know that a minimum number of stem cells to safely complete a transplant is 2 million CD34+ cells per kilogram of body weight. The number of CD34+ cells is checked in each daily collection and the number tallied. The stem cell collection process continues daily until the planned number of stem cells is collected – usually 1–4 days. Some transplant centres check the number of CD34+ cells BEFORE starting leukapheresis to make certain there will be a good collection that day. Most transplant physicians collect enough stem cells for two transplants (over 4 million D34+ cells per kilogram body weight). "

Giorgio de Chirico
Art Gallery of WA

The reason Dr Brad and Tina were so happy was that my "CD34 - Absolute Count" was 97.3 from just one day !! Yay me !! (They needed the count to be 4 Million CD34+ cells per kilogram of body weight.... mine was 9.7 Million - I think!!)
The next hour was spent talking to Tina bout the next stage. One comment that kept being repeated was " I'm not going to lie to you.... it's not going to be easy"
Diarrhoea, tiredness, sickness, mouth ulcers, indigestion, fever, bruise easily, hair loss..... these were the most common side effects. My body must have heard this and saved me the worry of the "hair loss" by getting that one over with nice and early !! Thanks body !!
So anyway... I was also thinking about my blog and once I start this next stage. I will try my utmost to blog what's happening, but the posts may be very short and also randomly posted  as I really do not know how I am going to be. Like I said though, I will try my best to share what's going on.

Black cockatoo in our tree

I have no idea how I'm going to manage a photo a day too. I mean, how different does a ceiling look day after day !! Another thing I will have to do my best with.
One of the most exciting things that has happened this week though..... and it negates all the above feelings and makes me happy...... is that my dad has booked his flights and will be coming to visit. BIG YAY !!! Soooo excited and cannot WAIT to hug him. If there is one thing that is going to get me through all of this, it's the thought of seeing all my family soon. If all goes according to plan, we may have a wedding to plan for January. This is going to keep me very busy and just a tad excited. But before I jumped too far ahead, I will get through this so I can get excited about 2013. This is my plan.......

Wahol

Note: I caught up with a very dear friend last week and we decided to go to the Art Gallery of WA.  They had an exhibition of Picasso to Warhol. I had a great time taking snaps of the art. Afterwards we came home and hit the vino..... I believe I went to bed around 2:30am.... to be honest with you, I can't remember....

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.