......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.......

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 !!

D+6

Just a quick update. Been feeling pretty low the past few days. Sunday was the last "good" day. Monday I just felt wiped out..... And the feelings haven't changed since then. No energy, diarrhea, nausea.... Just a part of every day now. However, I haven't had to go into hospital with a fever. And I've kept my fluids up. So it's not all bad !!
I had to start my injections last night. Yet another pill/prick/suction of me. But I shouldn't complain..... It's all going well.... As expected.
I'm off the the hospital now for another blood test and check up. My white blood count should probably be '0' now - neutropenic. This way I can start to build up and start again !!!

Wish me luck.......

.......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