Hands.... touchin' hands..... Reaching out ...... Touching me .... Touching you .....

It was mum's birthday on Tuesday. She would have been 69. I still hear her laugh and her voice in my head. And in every image she's laughing.... and then I cry.... again. Does it ever get any easier? or not hurt so much? I get that pain in my throat when you're trying to stop the crying. But all over the world on Tuesday, we were having a toast to mum. Bacardi & coke's were being raised to the sky in her honour. I actually had an Oyster Bay SB. They didn't have a Bacardi in the restaurant we went to. So I chose the next best thing. 

My First Orchid Bloom !

One fantastic thing that I'm sure mum has had a hand in this week, is my orchid has flowered. It is the first time in five years I have managed to get my orchids to bloom. Mum always had loads of flowers on her orchids and I was always jealous. So this was awesome for me. I have one flower that opened yesterday and about four more to come.

This past week has been a good one though. I decided I'd had enough of lying low, and the smell of anti-bacterial hand sanitiser was really getting to me. The smell of it now actually brings on nausea !! Over dosed on the stuff I think !! It was time to start living again. I was happy to be semi-sensible. But I could tell from the way I was feeling that I was on the mend. So the "no visitors" ban was lifted and I have gradually re-entered the land of the germ infested living. It's been fab !! I have finally had someone else to talk to other than my fiancé. (no offence Dirk) And with the ban lifted, that also meant .... SHOPPING !!! wahooo. I grabbed my bridesmaid and we went wedding dress shopping. How easy is it?? OMG I was expecting tank loads of fuel as we drove from shop to shop trying on meringues and toilet roll holders! Then I was expecting to have to buy a ticket to Melbourne and fly across the country to hit the shops in the East...... but no... After the inevitable meringue shop (the 1st one) we drove to another one and were turned away !! Yes that's right, we were told it was by appointment only and they wouldn't let us in !! - you can only imagine how that went down with myself and Snapper !!! - so we headed into Claremont And the first store we went into, I found it. In my size. And it was perfect. I had butterflies in my tummy. We put the dress on hold and went for a quick glass of Moët. I couldn't stop thinking about it. I knew it was right. So I went back to the store and purchased. Too easy !! 

Hello Kitty Wedding Dress

Now the hunt begins for the perfect shoes and accessories. Not to mention the perfect bridesmaid dresses. With one in Perth, one in NZ and one in Dubai, it's going to be interesting on how we co-ordinate it all !!
But my biggest worry at the moment is getting the invites out. Well, that and my hair growing back in time for the wedding. 
I had my bloods done yesterday in time for my appointment with Tina today. Unfortunately when I got to the hospital, she was sick and wasn't coming back all week. But I was still seen and my results were fab. Pretty much all neutrophils, haemoglobin and platelets in normal range. So all I have to do now is have my Zometa infusion on Wednesday and catch up with Dr Brad on Friday and then that should be it. I will be released from the hospital and go back to Dr Ben !! OMG I can almost see the light at the end of the tunnel.
I will have to get back to work soon though. No pay is tough, especially when we have so much expense coming up. The worse thing is, I actually took out salary insurance to cover me for any leave that may happen. This was a couple of years ago. Unfortunately, it only kicks in after 90 days of leave. And that is after all of your sick leave and annual leave have been used up. I'm not going to need 3 months of sick leave, but will still lose approx. 6-8 weeks pay. As far as I know, there's nothing that covers that. And when I do go back to work, I won't have any leave at all. This sucks !! It's not even my fault !! Ive had to sacrifice pay and leave to get better from this bastard disease. When it comes to getting married and seeing my family at Christmas, I'll be lucky to have enough leave to take any time off. Not to mention a honeymoon. But on the bright side.... at least I'm getting better. 
Well, as usual it's the middle of the night. I've not written about anything that I had in my mind. Like I said, it's been a good week. We've also had the fantastic news of two engagements this week. So wedding bells are ringing everywhere. It's great. Massive congrats to our special friends on their engagement, I can't wait for the celebrations.....

Sometimes I feel like I don't know .... Sometimes I feel like checking out ..... I want to get it wrong ..... Can't always be strong .... And love it won't be long...

A Card I Received Today !! Brilliant
Thanks Lori xx

It's Friday and I'm home (yay) I was released yesterday afternoon and it was a GREAT feeling. Not that  I have one complaint about the staff and the care they give. But the food is quite bad and the boredom is ..... well just plain bloody boring !!
It was great to have a visitor yesterday (thanks Phil) I got the OK from Dr Brad that I could start to see people and not be as "anal" as I have been about being around people.
We had risotto for tea last night (made in the Thermomix of course !!) and it was "heaven" just delicious. We watched some TV then I sank into my bed and drifted into a gorgeous night's sleep.
This morning I had to have more bloods done. And I had to fast too as I was having one called FMBS (i think) which was a urine test then bloods. So I filled my bottle then Dirk decided to drive me in. I haven't driven for 3 weeks and  wasn't sure how I'd go.
Once in we also decided to go sand see Tina instead of calling her. She was glad we did and asked us to go back in a hour so we could see the results.
We headed down the road - away from the hospital - for a coffee, and I also popped into work to say hi to a few people & pick up some mail. It was nice to see a fe people and pickup the latest goss too !! ha ha! (and what goss I got too - omg) 
After our coffee we headed back to HCC and Tina called us in.
Bloods were good-ish! Haemoglobin was 105 (good) White Cell Count 3.8 (good) Platelet Count - Blood 210 (brilliant - normal range) Neutrophils 0.68 (not so good) I was almost neutropenic again. Thank goodness it didn't show up yesterday as they wouldn't have let me go home from hospital !!
But this means I am now back at home, have to be careful with visitors again, careful with my diet again, and I also have another get into jail (Hospital Emergency Dept) free card again. Damn !!! I was hoping for better than that !! I'm also back on the injections just for two more days..... sigh......
However, I am feeling ok so I guess that's good. Have been a bit snotty as a result of last week's cold, but I don't feel (touch wood) sick !!
This afternoon, I've decided to make a playlist based on my blog titles. Seeing as my theme appears to be quotes taken from songs, I thought I'd put one together. If anyone wants it, I'll attempt to make it public.....? It'll be a right miss-mash of music !! This is my 74th blog entry and approx 85% of my entries have lyrics as the title, so it'll be funny to see how the list plays (for me anyway)
So that's it for today.... I have been quite low this afternoon. It'll be mum's birthday on 28th and already I can't stop crying. I think I'm beginning to feel the pain of her not being here. I'm having "mum-moments" about 5 times a day at the moment. Probably because I have so much time...... Time to get better and get busy I think !!! I don't think I could not work.... I miss it too much.
Anyway, now I'm babbling so I'll sign off for the day..... 
Thanks for listening xxxxx

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......

......Number one is to find some friends to say "You're doing well..." .....After all this time you boys look just the same." .....Number two is the happy hour at one of two hotels, ....... And settle in to play "Do you remember so and so?".

D+8 - D+12 (Friday to Tuesday).....

Well I jinxed it in my previous entry.... as I probably should have guessed. Friday morning I trundled off to my appointment with Tina and was told I was neutropenic. (Neutrophils at "0") I didn't feel too bad. I was given fluids again and had my CVC dressing changed. We made a bet that by Saturday evening, I would be in hospital as my "C-Reactive Protein" results were at 44. Which meant I had an infection brewing. We went home and Dirk went off to work for a couple of hours. I crashed on the couch and fell asleep for a few hours. From around 3:30pm my temp was up over 37C and didn't look like coming back down again. The heater was pumping but I wasn't hot..... it was time to go into the ER !!
I'd been given a "ER Free Pass" which meant I didn't have to queue, and I would be treated as a VIP. It worked a treat, and as I passed a woman screaming because she wasn't allowed to have a smoke in the ward, I was given a bed away from everyone else and had a nurse assigned to me. It was just like the old days walking to the front of a queue at a club and walking straight in and up to the bar !!!

Daily View

The staff (as always) were amazing. I wasn't left waiting for anyone. Wasn't left wondering what was happening and felt totally looked after & informed. I had a thorough work-up done and X-Rays taken. Then they fought to have me admitted to a private room in the Haematology ward. At first I was going somewhere different, but they managed to turf someone out so I could get to where I would get the better care for my condition - as I said before.... they were amazing. After arriving at around 5pm ish, I was in my room by 8:30 ish. I was hooked up to a drip with antibiotics and fluids. Dirk & my sis left and I eventually fell asleep.
Saturday (D+9) was my worst day.... I had a temp all day, spiking up around 38C - 39C most of the day and I was in a state. Shivering, diarrhoea, no energy, headaches, stomach ache.... awful. The whole day was just a blur (bluurrrgghhh) Saturday night I slept a little better - even with the seven extra blankets I had on me - and Sunday I started to lift a little. Dirk & Jo came in every day and sat with me. Even if I wasn't talking much, they sat and were just there. I have cravings for either a drink or food which last only once, then the thought of eating or drinking it again, makes me nauseous. So Jo & Dirk have been running backwards and forwards trying to manage my cravings. The hospital food, unfortunately, lived up to expectations and was absolute shite. I'm hoping I will have been able to lose those extra few kilo's as I haven't been able to stomach too much !! Rubber Omelettes, brussel sprouts (boiled to within an inch of their little cabbagey lives), lentil soup (no seasoning as I'm not allowed) ..... it's been tough !! Being neutropenic means you have to follow a Neutropenic Diet so there are certain things I'm not supposed to have - like salad.
Anyway..... like I said, Sunday was better, Monday (D+11) was better again. I also started to see my Neutrophils go up on Monday - they were at 0.58. This was good. It meant my white blood cells were re-generating. Which is basically your immune system. When it gets over 1.0 I was looking at going home.
And so after spending the day yesterday with my sis, playing scrabble, having "mum moments" watching TV and drinking cups of tea, I spent another slightly restless night ( I've discovered I don't sleep well in hospitals) in hospital. It's fine of you are a newborn and need to wake up every 4-5 hours but when you're 42 and don't, it's just not the same !! Ob's and blood tests every 4 hours.... pills, fluids, beeping machines etc etc..... yawn !!

My CVC that came out of my neck !!

This morning, I woke to the great news that my neutrophils were at 1.66. One point bloody six six !!! yes you read it..... AWESOME !!! This was good news and my nurse got me all excited telling me I would probably be able to go home...... I was not getting my hopes up this fast !! It was only 8:30am !! The Haematology Dr's were doing rounds today and I was to be flagged for inspection. I told my nurse to tell them I wanted out. And she did. At 11:15am in walked Dr Brad !! I didn't realise HE was coming in and it was good to see him. He was VERY happy with me and said "Yep, you can get out of here" OMG.... I cannot describe the joy !! I did the BB dance in my head .... you know the one.....
And so.... I am home. With my family and it feels great. I was able to eat a nice tea - thanks Jo - watch Big Brother - thanks Dirk and I am now about to sleep in my own bed (with ironed, yes ironed "fresh sheets, fresh sheets" - thanks Jo)

It doesn't get any better than this.......