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. 

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 

This life well it's slipping right through my hands...... These days turned out nothing like I had planned..........

sad (sd) adj. sad·der, sad·dest 1. Affected or characterised by sorrow or unhappiness. 2. Expressive of sorrow or unhappiness.

grief [griːf]

n

1. Deep or intense sorrow or distress, esp at the death of someone

The past two weeks have been ........ sad, surreal, awful, emotional, lonely, tearful. There are so many words that don't seem sufficient for what I've been feeling. I still don't really think it's sunk in that I've lost my mum. I still picture her at home with dad. Still think about her all the time, still think that I can just pick up the phone and call her, and then I have to tell myself that she's gone. And I won't be able to speak to her again. I don't know if I'll ever be able to get over that. How does any daughter (or son) cope with that feeling?
The funeral was last Thursday and that was the worst day. I lay awake most of the night crying because I wasn't there. Crying because my dad had lost his best friend - the one that he'd been with since 1959. But most of all because we are just going to miss her so bloody much. Apparently, at the funeral there was standing room only. So many people were there that my family were overwhelmed. But I guess it's not really surprising as my parents have soooo many friends. And she was so incredibly loved by all the people that met her.
One of the nice things that has happened, is the amount of donations that have come in. Dad has asked that instead of flowers, people donate to either bladder cancer (UK) or leukaemia foundation (Australia) and when I spoke to him on Saturday he said they'd had over £1800 in donations to the two charities. 
Here in Australia, we decided to have a morning tea for mum so her friends here (and myself) could say goodbye too. It was sad, happy and lovely. Just having some of mum's friends around me helped. She really did know some beautiful people.
On Saturday, I slept until 1:30pm !! 
And now, I have just 4 days before I start stem cell replacement. Last Thursday I took my last Thalidomide for a while (I may have to continue taking it again later) and on Friday I go in for a dose of chemotherapy before being sent home with growth hormone injections for 10 days. Then I return to hospital for the stem cell harvesting..... it's going to be an interesting journey!!
I have a crazy week at work - last week of the financial year, performance reviews, new staff, interviews. And in between all of that I have to go for a heart scan and then the chemo on Friday. They say the chemo could make me tired.... it's going to be hard to know whether I'm tired from work or the drugs !! 
I have some TV shows saved to watch though. We've just started watching "Girls" and are about to embark on the first season of "Breaking Bad" so at least I won't get bored. And I can always blog .....
I'm not going to ramble on about how sad I am. My mum certainly wouldn't want me to. But I'm also going to make this a short entry as the big week ahead start in just a few short hours and I'm going to need some beauty sleep.
Big thanks go to everyone that has helped our family in the past few months, whether it's just a call or message to say you are thinking of us, or by physically being with one of us helping. Thank you to everyone. The cards, flowers, support, donations, messages.... everything has been overwhelming, but also comforting to know that all over the world we have support. Much love to you all.
And as my mum would say....... night night... god bless


This is the poem that my sister read out at mum's funeral - I think it's beautiful......

Do not stand at my grave and weep, by Mary Elizabeth Frye, 1932 
Do not stand at my grave and weep,
I am not there; I do not sleep.

I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain. When  you  awaken  in  the  morning’s  hush I am the swift uplifting rush

Of quiet birds in circling flight.
I am the soft star-shine at night. Do not stand at my grave and cry, I am not there; I did not die. 

There were some guys on the trapeze at our local park tonight. 24-June-2012

Close your eyes and surrender to your darkest dreams…… Purge your thoughts of the life you knew before……. Close your eyes, let your spirit start to soar…….. And you'll live as you've never lived before……..

I've never felt so sad and numb in my entire life...... and so far away.
Sometimes I feel like it's just not real, and then I realise it is.... and I start to cry. The heaviness in my heart and those moments when the pain in my heart takes my breath away and all I can do is let out a moan of pain as the tears start again, is one of the worst feelings I've ever had. But most of all I hate being so far away from the rest of my family.... I just want to be with them. To share the pain with them, share my tears with them and hug them and have my dad hug me back...... But I know it's just the wrong time for me. I can't delay my treatment - especially not now. Mum would haunt me forever if I did !! God I miss her......
I have two more days of Thalidomide and then that's it for a while. There's a chance I may have to take it regularly after my stem cell treatment.... but I have to wait and see what Dr Ben says in a few months time.
I had a bone marrow aspiration today or a "BMA" as they had written on the form. Have you ever noticed how certain numbers and letters follow you forever? In my life it's number 4 or 41 and then MM (Micromine, Multiple Myeloma) BMA are my dad's initials !! ... anyway I digress !! The bone marrow biopsy was a little painful. No sedative this time... just Dirk's hand to hold onto. (which did get crushed there for a few moments) The registrar did use a local anaesthetic which numbed the surface skin, but when she started to drill out part of the bone it got a little uncomfortable.... to say the least.... and then she went back in for the bone marrow. And the same feelings were experienced again. But overall after about 10-15 minutes it was over and I could relax while I had my Zometa infusion...... no problem.
On the way home we stopped off to pick up my new geeksters (glasses) After realising that I was holding books and labels further and further away from my eyes to read them, I needed to get my eyes checked, the optometrist prescribed me with my first pair of glasses. I figured if I was going to lose all my hair, then I would need something on my face to look nice.... so I picked out some groovy Prada ones !! Mum would have been proud !! Back at home, I started to work as the anaesthetic wore off. By around 4pm I felt like I'd been kicked in the arse.... hopefully all will feel better tomorrow.
Sitting in the Haematology Ward today, we listened to everyone around us. It's a great way of finding out information as most of the patients are going through the same thing. Most of the patients were men of about 55 yrs and over. But they all seemed relatively happy. The man next to me was having chemo. Exactly what I'll be having next week, so Dirk & I were listening to everything the nurses were saying.... suck on ice the whole time to prevent mouth and throat ulcers. Apparently the more you do it, the less chance of ulcers there is..... I reckon I'll be doing that, I'd lick the bloody freezer if I have to!!
But before I start thinking about next week, we have to get through mum's funeral. I can't imagine how my family are all coping. In some respects, I wish I was there..... but on the other hand, am I fortunate that I'm not? .... I don't know.... Friday I'm having a morning tea / champers / get-together in memory of mum for all the friends she had in Perth. I know I'll sob, cry, get all teary.... but hopefully we'll have a good laugh too. That's the idea. No dreary mourning.... more of a celebration of the love mum bought to the different people she met. We have received the most beautiful flowers and cards this week. And the amount of messages has made me cry over and over again. I've said it before, we really are quite lucky to have the love and memories that we have. Even though it's an absolute bastard with what's happened this year. At least we have each other, and the most amazing family, memories and people around us.... for that we are extremely lucky ..... and blessed.

As always it is the middle of the night, and I have to be up for work in a few hours. So must get some sleep.... if my family are reading this, know that I love you all sooooo much. And in about.... 3 months I will be ok to travel again.... so look out !! I will also be very keen to meet my new niece. Not to mention see my other niece & nephews. Love you xxxxx.... and to my mum, I love you forever....