Update x

Just a little update to say how im doing. I finished my radiation treatment last week -  I hope I never have to go back ever again!

The effects of the treatment work at their maximum 1 week after treatment finishes - so right about now, my leg is on fire. The skin on my leg is a really dark color, looks like I have been burnt close to a fire. My scar from previous surgery is probably the victim in all this - not pretty! The nurses put a cloth like bandage called a "Bolis" over my scar every time im in the machine, this apparently doubles the effect of radiation in that one place - why im not sure, but thats what the doctors wanted. To say im tired is a complete understatement. Im also finding falling asleep at night diffulct, last night I didnt drift off untill 5am. 

We saw the surgeon again, have another MI and CT scan to check to see if it has shrunk - Im pretty sure it has, as it feels smaller, but we will not know until I have the scan.  I have my date for the major surgery scheduled for April 4th. Cant wait for all this to be over. Feeling very lethargic about it all. Infact maybe I would say im "emotionally challenged" about it all, one minute I couldnt care less, the next im feeling a little upset.

The surgeon kindly bumped up the "7days" in hospital - to the possibility of "10days" in hospital.  Im going to try my darn hardest and im pretty sure ill be out in 7. I hate hospitals, I didnt hang around after I gave birth to harry either.

Mum and me have been working very hard on putting harry onto formula feeds. Once again, something that kills me, but we have no choice. I cant produce enough to see him through 3-4 weeks after surgery, and thats just because my medication effects my supply. But I may just be able to keep it going, fingers crossed. Ill be hooked up to a drip and a pump in hospital - charming. In good news he now drinks it. When we first started him, he HATED it. Spat it out and started screaming. That went on a good 4 weeks, but we are are doing every third feed formula. A work in progress.

On a totally amazing note - and this made me feel quite strange, compelled and overwhelmed, but Simons mother Kate, works at a hospital in Scotland, they had been fundraising behind her back to pay for her flight to come over to NZ to help us! She turned up to work one day and there was a bucket of cash. Totally amazing. In fact the support from strangers we have had, has been amazing.

In us life, as normal it just has not stopped, I think having to travel to the hospital everyday made everything so much harder. I have been flat out with work, simon has 10 music related projects on the go, maxwell had his second birthday, Valentines day (which consisted of me and simon sitting at the engine room yawning into our double baked goats cheese souffles trying not to fall asleep) Harry is going from strength to strength, mum had her birthday while she has been here, my youngest sisters being an egg, my best friend in london got engaged, I could keep going on but its same old - same old.

Would just like to say, how much I appreciate the help I have had from my mum. There is no way I would have ever been able to get through these last 5 weeks without her help. Im sad she has to go back to christchurch, maxwell and harry are going to notice her not being around. She makes things really fun for them - shes an amazing grandmother to my boys, as much as she talks after shes had a wine (she can taaaalk), I will miss her very very much xx

We have Pania, my step mum coming up on monday for 2 weeks, with my dad coming up for the last weekend - this is super exciting for us, its their first trip since we moved up here x

RANT.

Pretty much hating on everyone thats trying to run my life for me right now. People need to stop and let me get on with it my own way. Im not a retard and dont let this illness own me. 

Its been a couple of weeks since I have done a blog update. To cut a long story short, my children got very ill with multiple bugs and croupe, the day I stared my treatment (damn you bloody day care - thats where this all started) . Thank GOD my mum has been here to help. Without having an extra pair of hands, there is no way I would have been able to get to the hospital everyday. Regardless - I cannot take them anyway, as when I am in the machine - no one else can be present in the room due to the high doses of radiation.

Anyhow - 2 weeks later they are better - Maxwell is back in daycare 2 days a week, and good timing too as my symptoms have started to kick in, Fatigue is HORRIBLE. I need to have a few hours extra sleep in the day , its like a wave being washed over you, one moment im fine - the next or im shaking and feeling very lightheaded. Sometimes I cant fall asleep but im rinsed out. Its strange - the doctors told me there is a complete difference to tiredness and fatigue. Bad fatigue can lead to insomnia. Tomorrow I will be halfway into this 5 week stint. It is nice having some me time everyday driving in with no kids, but as the effects have kicked in, well I would love to do without them!

A week ago, I was driving in, and pulled just off the motorway,,what happens - the car dies!  So we spent all weekend car shopping. Obviously we need something reliable to get me in and out of hospital and safe for the kids. Byebye huge chuck of our savings! Oh well, at least we are not in debt :)

My leg has now started to change color. Its gone very dark - starting to show signs of sunburn. Apparently by the end it will look quite intense, but years of tanning in southern hemi sun will hopefully help my case ha.

Something which has had me deep in thought on the daily - is how strong everyone around me is. Especially at the hospital, everyday I see mothers or fathers with young children (I am one of them) old people, toddlers and school kids, all in the waiting room sitting around waiting for their chemo or radiation appointments. I have to wonder whats going through their minds - probably the same things as me. I seem to notice a lot more when people moan about the most miniscule and pointless crap in their lives - makes me laugh. I dont really have time for the small dramatic events that might have once consumed me - its funny how much better I deal with a stressful situation, I dont even blink anymore. Life really is living for happiness. Every time I turn on facebook, someone is bitching about some form of useless info - yawn. I still love you all but the fact you have a huge hangover from hours of self inflicted abuse - does not entertain me no more :) My family is where its at x

So yes! Not too much news. Simon has a release coming out in March. It was a very hard time for him when I was waiting to be diagnosed. As hes a "creative" at nights he would lock himself away for hours on end in his studio - tinkering with god knows what. Well that just happened to be a 6 track EP, my cancer and diagnosis as his muse. The press release went out last week and can be read here:

http://musicbyghost.com/2012/02/01/ghost-a-tale-of-life-in-vi-parts-2/

So this is how my lovely, has personally channeled his feelings regarding all this.

I cannot really express how overwhelmingly busy we have been. Besides being at the hospital everyday, I have had visitors, lots of work on the go, dinners out, kidskidskids - it never ends. 

So over the next few weeks its just hospital everyday, getting in rest, work and preparing for maxwells 2nd birthday. His first was cancelled as we were due to fly into christchurch for his party - but the major earthquake happened and we never made it. Funny how every time we go or attempt to fly down there, theres an earthquake!

This last week has been quite a tumultuous one for us. I have been flat out with work, we had our appointment with my surgeon, playdates with friends, daycare, plunket checkups, visits from the Cancer Society, and its all gone downhill as Maxwell now has croup - so there really is no time in the day to be a sado ;)

So on tuesday we went all the way back to Manakau to see Dr Mike Flint, (minus maxwell as I scheduled daycare around the appointment ) who was 30 minutes late... anyhow, we had lots of questions answered. I got to see my actual MRI, Xray and CT Scan results which were quite fascinating, my tumor is actually attached deep into my thigh muscle but mostly sits on top on the thigh. 

He said that Radiation works very well on this type of cancer - in some previous cases it has completely killed off the whole tumor. 

In grossness, I will be cut open from the top of my leg to me knee, in hospital for 7 days, will have a massive scar and have to be careful with the healing process on my leg. Radiation kills all the cells and everything living and good in that area, so healing will take some time.

I have to have CT, MRI, Bloods and X-rays every 3 months for the first 2 years, every 6 months for the next 5 years, and then yearly for the next 10.

The only thing that sent off serious alarm bells is my lungs. When I had my first CT scan over a month ago, the doctors gave me the all clear for tumors in my chest  - but mentioned there was some small "nodules" in my lungs - and it was nothing to worry about. Dr flint showed me my CT scan of my lungs, and there are small specs of white dotted over them. (Anything that shows up white on a CT or MRI means that its not supposed to be there) He asked If I have travelled - ahem, yes most of my life, and that I had most likely had an infection in the past and not to worry about it, but keep an eye on it.

Hmmmm. Myxoid Liposarcoma has the potential to spread - and we know what stage im at. The worrying part to this is that the most common place for it to spread according to every piece of medical information I can find - your Lungs. Keeping an eye indeed.

Bad news for Harry - I have to start weaning him off the boob. He said the meds while im in hospital will mess with my milk and be dangerous. So I officially have 2.5 months to get him off. This is not cool - I fed Max until 9 months, I feel horrible that im not giving Harry the same start as his brother, I feel bad, like im letting him down. People will think im being silly but that was my personal goal.

So we left and in typical fashion, I had forgotten to ask the majority of questions I had intended to ask, not to worry, ill be seeing him again in a few weeks.

On thursday I had a nice lady from the New Zealand Cancer Society visit, giving me the rundown on services, counseling, gas mileage allowances, therapy, groups - you name it she knew the answer.

Besides that, according to plunket, Harry is doing brilliantly and exceeding all expectations. Max on the other hand had a fab start to the week, we picked him up from daycare on tuesday and he was FILTHY, sand - food in his hair, dirt on his cheek, you name it - but he was smiling ear to ear. Hes taken like a duck to water at daycare. We only decided to put him in when I was diagnosed, so he could separate a little from me. Downside is in the 5 weeks he has been attending, he has been ill twice - today the doctor told us he has croup. Lord Jesus, I was up every hour last night, and that is no joke. Between max waking in tears and harry waking for feeds, today I was a zombie - and I still have not had a nap 10pm.

Mums coming on wednesday to help for the month, as I start treatment on thursday. We had a rocky start to the week, as she nearly bailed on helping me out for the beginning of my treatment, but we got it sorted out. She tells me she wants to be here - so I have to go with that.

Here are some pics of Harry chewing on vegies and our trip on sunday to Kelly Tarltons, Max wasnt feeling being a penguin! x

Interesting story on CBS recently regarding young people and Cancer....
Falling into the 'adolescents / young adults 18-39' category still I will let it be known!

http://www.youtube.com/watch?v=py42_jS0fMo

So I felt quite upset at the beginning of the week. The Natalie Murphy story that I wrote about in my previous post, had me feeling quite down. I just felt overwhelming sadness for her husband and young son. Shes of similar age to me, her son is the same age as Maxwell, and strangely she lives in the same suburb as us. When you read her story you cant help but put yourself in her shoes and try to absorb her thoughts and emotions. I relate with everything she mentions in her early posts - they are heartbreaking. How you will never forget the time you are told you have cancer, what its like to tell your loved ones and being strong for your kids but uncertainty is always lingering.

If there is anything I have come to learn from her story is that - what is - and what is not important. What to keep close to your heart and what to let go. If I can show half the strength she showed during her battle - theres no doubt ill come out on top :)

So in good news I had my radiation assessment and scheduling appointment today. Just standard stuff, tests, another CT scan, lots of information. They positioned my leg inside a moulded cast and measured up my tumor against the lasers inside the machine. Didn't know I would be getting permanent tattoos today! They had to make some on my leg so that everyday when I go in for treatment, the machine is aligned correctly. I think they should disappear in a few years and fade away, but my leg is starting to look like a snakes and ladders board. Every time I pick up max from daycare, someone's always checking out my scars from surgery! Ive had the bandage off 2 weeks now, so its still quite prominent.  Im guessing its hard not to look, ill get used to it.

They went through all the side effects of the radiation with me. Fatigue, Nausea and Extreme Sunburn like rash on my leg - They warned me that it could get very very bad and look like its literally cooked. Charming! But she also said that as im naturally quite olive, my skin might just handle it, we will have to see. 

I have to use creams everyday on my leg, no extreme exercise, no bikram yoga as its a breeding ground for bacteria (not good for my immune system and wound) no swimming, no sunshine. Ill slow down a lot in the last few weeks and a couple of weeks after I finish as thats when the radiation is working at its peak.

My mother is coming up from Christchurch for the radiation segment of my treatment to help out, and Simons mother is coming over from Scotland to help out for the surgery segment of my treatment! We are so lucky and feel so blessed to have family that can do this for us. Not to forget that this cancer is completely interrupting their lives, and at times I feel guilty of this.

We have our next hospital appointment on Tuesday with the Orthopedic Surgeon Mike Flint and I have a million questions for him.

Just want to say thanks to all those people who are sending me love and good thoughts via email and facebook. Nearly all my old friends from High School have been intouch too - which I find super heartwarming, many of you know I moved overseas for 9 years and fell out of touch with many people from that era, so to hear from you all again has been awesome. 

Now to make the most of my weekend and swim in the sea and try to tan. (weather forecast has just predicted rain, go figure).

These things only happen to me I swear! If I have learned anything this last few months, and that I deal with stress, major bad news, in a much more calming and controlled manner - not that im some raging lunatic to begin with, but you gotta keep it cool for the kids you know? Crazy parents equals crazy kids and thats not what me and simon  are about.

We grab our flight and as soon as we cross the cook straight the Aircraft starts descending - this is NOT meant to happen for another 20 minutes. The Pilot announces that there has been a major earthquake in Christchurch and we are turning around and landing in Wellington. We get to Wellington, and EVERY flight around the country has landed there in Wellington. The Airport was chaos and flights were being cancelled left right and center. After 3 hours waiting for ours to be updated - we get the call that it has been Cancelled finally. Max is starting to loose his na-na, im fed up, so we book ourselves into a nice hotel for the evening, order Mass room service, hot baths all round, tuck the kids into their portocots and relax in preparation for our long Ferry Journey the next morning at 8am.

Ferry Journey was mental, I think everyone else at the airport had the same idea as us, my poor dad drove 4 hours to pick us up - and we finally arrive in Reefton on the west coast late afternoon. Xmas was awesome, was super great spending time with my dad and Pania as I had not seen them for a whole year. My Aunty Karen, Uncle Grant, Uncle Terry, Vic, and Joe, Rosie and little Grace were all there too. I havnt seen my Wakefield family for roughly 1.5 years so that was really special. Sadly my Nana and Pop couldn't come as Pop got sick a few days before and was in hospital. But Nana staying ended up being a godsend (her words) as her sister passed away on xmas day, and she was with her - so that was the best thing at the time for them.

No one asked me outright about the Cancer - but I new it would come up eventually, I felt like everyone was tiptoeing around the subject waiting for me to speak about it - and when I finally did, the million questions came, Simons was great - he knows more about my illness than I do - he was the same in childbirth, knew exactly what was going on at all times.

I felt that Dad was not dealing to well with my news, he said to me that when I was a little girl, he could always do something to protect me if something was wrong, and he feels helpless now because he cant. Pania, my step mum confirmed it for me, I left some pamphlets with them to read on my last night - but she told me the next day that Dad couldn't bring himself to reading them as its all a little too much. This makes me sad - I hate knowing that this is effecting him. In fact, not even my mother who is one of the most emotional people I have in my life - has been so visibly saddened by this. Dads one of the toughest people I know, so if hes not feeling so good - it rings very true to me.

Anyhow, we made it back to Auckland in one piece. I got to spend a couple of hours in Christchurch with my sisters, their partners, kids and my mum which was lovely. Again, no one brought up the cancer thing until I mentioned it - but when I did the questions came. 

Its been a week now since we have arrived home - simon had to work in between the stat days this year which truly sux. Been thinking a lot about my treatment starting and surgery - we have to get another car over the next few weeks so I can get into the city everyday for treatment. This is a major drag, I hate spending into our savings, it seems like this is so unnecessary. Then on top of all this the huge petrol costs everyday - supplements, a change in diet, eating super healthy means super expensive. As far as im aware all my medical costs are free.

Up to this point (2 days ago) I still have not cried - infact I feel that I still have not come to 100% realization that I have this illness. Maybe because the fact that this type of cancer is curable - like many forms of cancer. But I have been putting off doing something that I knew would be my breaking point. Reading Natalie Murphys Blog. Strangely enough when she passed away, was a few days before I was diagnosed. Looking back now - Simon was turning off the news (which I watch every night without fail) and making sure I didn't read about it, I had no idea of his motives at the time. Well eventually i did get my mitts on the Herald when we stopped at a gas station, we were in the car on my way to...... the hospital for my results.
I have refused to read her blog, until now. So I will likely write again in a few days when I have gained some composure

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