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....

Is it getting better? ..... Or do you feel the same? ..... Will it make it easier on you now? ..... You got someone to blame .....

So....... the chemo and injections? hmmmm...... what to say !! It all started off ok. And to be honest has been alright...ish. 

Last Friday was the chemo day - I've already covered all that malarky. No need to waste keystrokes repeating all of it again. Tuesday I started the injections of 'Nivestim' - these are the growth hormones that I self inject morning and night to promote the stem cell production - prior to the harvesting. Actually when I said "I" started the injections.... what I meant to say was that Dirk started stabbing me !! much (I'm sure) to his delight. There were also all of the other drugs around last Friday's chemo that seem to have gone ok. I haven't had too much heartburn and I think my uterus is ok - how do you tell?

Anyway, back to the injections..... all good until around Wednesday night. I started with a headache when I went to bed. And by the morning had a really bad one. I'd slept really heavily Tuesday night and felt really groggy all day Wednesday. Thursday morning felt achey in my body all day and after Thursday evening's injection only slept for 3 hours before lying awake for the rest of the night. The feeling is like a body slamming flu - without the fever or chills bit. It's between a 'flu like feeling' and an 'aching from over exercising' feeling (Yes I do know what that feels like !!) ..... and now.... Friday evening ...... I just feel fragile. It's harder to walk as my spine hurts. All my larger limbs ache ..... but most of all my ribs and spine. Paracetamol is my new best friend. 

You know what I like about writing a blog..... you can whinge about every little thing. I can put it out there, share it with the world without actually saying a word. I think I should change my title to "vixenaus - my multiple myeloma whinge-fest" At least that way I'm not false advertising either. It's clear that when you see the title of my blog.... you are going to have to read about me moaning and whinging about shit. No surprises. 

I was wrapping a present today for a gorgeous friend. And all of a sudden had a flash back to December last year when I helped mum wrap all of her Christmas pressies. Flood gates opened and I had a 'mum memory meltdown'. These are going to become part of life now I think. It wasn't the first one, but it was probably the most hard hitting one I've had so far. And because it took it by complete surprise. It took my breath away. I must say though, mum would have been very happy with the gift wrapping. It was very Gerry !!

I was also accused of "over-sharing" last week. Too much information being published and shared. But I've always been a big over-sharer. Always worn my heart on my sleeve and let people know exactly what mood I was in. We are living on a world of over-sharing. Even the least exciting people share their dirty laundry. I personally blame BB,  Geordie Shore, TOWIE and all of those other Dirty Laundry Airer's. (And looking forward to the return of BB too btw !!!) I can always stop my blog and close down Facebook. But my dad has just joined and I'd miss all his updates !!! And anyway..... the person that accused me of this also laughed at me when I put on a beanie to cover my awful thinning chemo hair this week. So who's side are you all on now?? ha !! 

Off for the harvesting on Monday. Only 2 days left of injections !! yay !! I'm having my hair cut tomorrow. I haven't lost it, and to the untrained eye it probably looks about the same. But it is soooo thin now and whispy. So I thought I'd just get it cropped. If I like it I'll share.... if I don't.... I'll probably still share.... seeing as I'm an "over-sharer" !!

Such is the way of the world...You can never know.... Just where to put all your faith.... And how will it grow? .....Gonna rise up ....Burning black holes in dark memories....Gonna rise up...Turning mistakes into gold...

It's been an interesting week. Trying to come to terms with mum's death. It still seems all so surreal. Things at back at home in UK are settling (I think... do they ever?) My sis is back home with her kids in NZ and I guess all we can do now is start to move on, with our beautiful memories and know that she will always be in our minds..... and not too far away from each of us. I was talking to my sis the other day and we talked about how it is going to hit us over and over again at different times. The first time dad comes out to visit ..... but mum isn't with him. The first birthday, first Christmas in fact every one of those occasions time and time again. I chatted with one of my besties last night. He was at mum's funeral so it was nice to chat about it from his point of view. One of the things he said was that it was a fantastic do. Not too maudlin and sad at all. IN fact the only person missing was mum !! haha. She would have loved it. We had a few tears and a laugh - it was good. 
I spoke to dad this week too. He seems to be going really well. My bro and sil and nephew are heading down again this weekend. They are taking nephew (aged 2) to Thomas (the Tank) World. I'm not sure who will be the most excited... dad or brother !! Dad also mentioned he had received close to £3000 in donations to mum's Bladder Cancer Foundation UK and to The Leukaemia Foundation of Australia. This is fanTASTic - thank you to everyone that has donated. I think there are also people that have donated directly online to both.
This past week I have been drug / chemo free for six whole days and for the first time in over five months had started to feel less fuzzy and foggy. Even Dirk mentioned my acerbic wit had returned. We found ourselves laughing and joking like "before". The regular banter was back on.... it was good. We also had some fantastic news that some very close friends are going to have a baby. With all the sadness that had been around, this was such great news and we were very happy for them.

Seeing as I was staring Autologous Stem Cell Replacement this week, and I also wasn't sure how it was all going to pan out, I thought it best to advise work that I may or may not be back in for a while. As I've said quite a few times, they have been absolutely amazing.... so I left work on Thursday - prior to starting treatment on Friday - complete with laptop, paperwork and lots of best wishes. We went out for dinner as my taste buds were back for the first time in ages and my iron count was lower, so what do you do? ..... go out for a steak !! We found a fab little place locally and had an amazing meal.
I think the people around me have been more nervous about the start of this stage than me. I haven't been scared or nervous at all. It may because there really isn't a great deal of information on what actually happens in the first stage..... or should I say the way it makes you feel....so by not really knowing what happens, and by feeling pretty good - albeit sad about everything that has been going on - I'm in a pretty positive stage of mind. 
Tuesday this week I had to go for a heart scan - it was a little like an MRI.... first they inject die into you and I had to sit for about 1/2 hour for it to pulsate through my veins. Then lie on a scanning machine, very still for about 20 mins and they take pictures from a noisy machine.
Back to the hospital on Thursday for a lung function test. This one took a little more effort. Lots of huffing and puffing while hooked up to a machine. If one result wasn't good enough, then I had to repeat until it was !! Some of the other test were "take the average reading of six attempts" So after an hour of that I was told I could go..... to pathology for more blood tests. Luckily I managed to beat the rush and was in and out (with another band aid on the other arm) in 20 minutes...... Luckily I made it back to work for a meeting with MD / COO with some interesting company news. It was so interesting that I had to miss a pre-booked lunch engagement with half of Perth's mining elite. Never mind I go every month so there'll be more. And I had also vowed not to drink this week - in order to cleanse my liver - so missing the lunch meant I wasn't tested with the offer of vino on tap at every table.....
So ..... Friday.... up and at it early so we could get to hospital. We made it on time and got a park outside the back door which always seems to have free parking spots.(probably because it's $2.50 an hour) but we weren't sure how long we were going to be there so we thought "what the hell". Into the Haematology Care Centre where we were welcomed, and the sat and waited for our turn. I was called a few minutes later and showed to my IV chair. My nurse remembered me from my bone marrow biopsy the previous week. She spent a few minutes letting us know what I was going to go through. 
1st - some Dexamethasone via the IV - 20 mg
2nd - and anti-nausea drug
3rd - Mesna - to protect the bladder (the chemo can cause irritation and sometimes bleeding - like cystitis)
4th - Cyclophosphamide - the chemo drug
All of the above were given over 4 1/2 hours along with approx 5 litres of fluids too.
So I was in the chair for about 4 hours. But it was comfortable as went prepared with iPad, iPhone and Dirk !! He spent most of the time entertaining the people around him and the nurses. Everyone had a "buddy" with them. It was a warm and happy environment. The nurses were caring and very informative if you had questions. It was nice.

I was sent home with two bags of drugs... a list of instructions and a hope that Dirk understood everything that was required !! I didn't feel too bad, better than I was expecting.
The growth hormone injections start on Tuesday. Twice a day for 10 days. These injections help to stimulate the production of bone marrow, to the point that it causes bone pain as it over fills the bone cavity and spills out into your blood stream. This is when stage two starts.....and I will go into more detail about this later....... 24 hours later I'm still feeling OK. I'm "just" beginning to wonder if I might take a Metoclopromide drug (for anti-sickness) as I've just had a bit of a burgh feeling as I've been writing this.....
Next week I'm working from home and going to see how I go. Then on 9th I'm back in for the harvesting part. I have a feeling (based on what the nurses said) that I'll then have a couple of weeks off before the implant happens. So I'll probably go back into work for a couple of weeks. Again... play it by ear....
Not much planned for now.... Dirk has upgraded his iPad today - Noice !!
Once again, I have to say thank you to everyone that has been sending me good wishes and messages. The past couple of weeks have been a roller coaster. I haven't responded to too many messages. But please know that I appreciate each and every message and they really help. I smile when each one comes in. So please don't stop !! xxxx Vix