Treatment Options in this Country

I have always been pleased over the years with my endo surgeries and treatment i have received from wait times to the hospital staff. I have never complained at all about it as i was always seen in a timely manner and happy but get cancer and its a whole different story!!

About 2 weeks ago we saw my surgeon here in Nelson again just to go over some more questions we had. While there she rung the specialist in Waikato to clarify some things only to be told that i can not be seen via the public system will need to seek treatment privately. I said oh ok so there will be a long wait then on the public list and the reply was so you can not go on the public wait list at all.

At this stage we had no idea if my insurance would cover the treatment or not so i was slightly stressed at been told if you dont have insurance to pay or pay yourself you will need to look at other options (which there is none) Thankfully my insurance although only verbal has said my surgical cover will cover this treatment i need which is great. However it does not cover me getting to Hamilton for my consult with the specialist so i can even get on his surgical wait list.

So this is where the problem starts, because i have to go privately to recieve the treatment the hospital now can not offer me any help. The consult prior to this one we were told they will help with expenses to get us up there to the surgeon so now we are left on our own to come up with funds to cover this. My insurance will refund the consultation fee but not until i have had the surgery treatment. I havent even asked about the help they said i would get after surgery homehelp, personal cares etc it would be the last straw to find out i wont get any help when I come home from it.

We are looking at approx $1500-$1800 just for our trip up there for 2 days. We just do not have anywhere near that sort of $$ and have no idea how we are going to come up with that. It is now starting to really stress me that it has now been 4 months since my diagnoses and im no closer to recieving any treatment at all. To be honest i am completely dumbfounded that how in a country like ours you can find out you have cancer but cant get the treatment you needed.

We are now in the position i will need to look at possibly closing my shop down and having to go and find a part time job to try and fund the expenses we will incur. Which is another problem who will want to hire someone that will then need 2 months off work to recover from the surgery and chemo. We could sell our house which is in our plan to do anyway but still need to finish it before we can put it on the market which to finish need $$. So its all just a circle of dead end streets that lead us back to nothing.

So at the moment im super stressed, confused and angry that we are in this position.

Don't Hide Behind that Camera

One more quick post for the day. If you are like me and are always on the end of the camera or hide from it because you hate photos, think you arent photogenic etc. STOP!! if something happens and you arent around tomorrow your family and your kids couldnt careless what you looked like. What i think is most important is they have photos of you with them to look back on and enjoy.

My number one thing on my bucket list is to get more photos with my daughter and with my husband so they will always have them as a keepsake to look back on should they ever need to. Even if you dont take good photos at least they can look at you and have a good laugh if you look funny right.

Stage of Grief next one for me Acceptance

Acceptance a word, emotion, action this is something i never thought i would do is accept my situation. i have to admit im a bit suprise at how quickly i have come to this point. I mean 4 week ago if someone had told me "its ok you will come to accept it and deal with it" i would have told them to buggar off ( in a nice way of course i mean i wouldnt want to rock that good karma right) But i actually do feel a huge sense of acceptance and a sense of ok then this is what i have been dealt, yip is damn crappy, but im going to get through this and do the majority of it with a smile.

People i think find me strange, im laughing about it and laughing in general. I actually feel really happy and have a sense of grounding i havent felt in years. Im taking more enjoyment in the little things and now taking more time to sit enjoy my family and everyday life. Its prompted me to get wills sorted, get our house organised, im in the process of doing a photo album up to get printed as a book for my daughter. Im starting with her first 5 years so she will always have a keep sake of all those little things that are just in my head.

This will sound really odd but in a way im kinda grateful that im going through this it is giving me such a different out look on life and how we are living our lives. Dont get me wrong i am not at all one bit happy about the surgery and recovery i will have to endure and i am going to try and remain positive that i will be that 50% that will beat this. If i end up not been then i am lucky i should have about 10-15 years (they really have no idea) to live my life to the best of my ability.

Sooo acceptance is a kinda nice place to be right now. We still have alot of stresses to work through with regards to recieving my surgery and finances (will be the next post on this drama) but im stearing my energys and time into alternatives to help me through this and give me the best chances of remission i can.

Stages of Grief next one Anger

I have to say i have never been so flippen angry as what i have been going through this. I have screamed, cursed and just physically felt sick with anger that this is happening to me. I mean come on this sort of things happens to other people right??? turns out im one of those other people.

I was so hurt and angry that life has ripped me off, i mean come on who the hell does life think it is to shorten my lifespan? I have never felt a sense of entitlement but feel i dont deserve this at all. I felt life had no right to do this to me especially not after putting me through 10 years of trying to have babies, surrogacy, adoption, endless surgeries (13 of them) years of IVF and drugs to try and concieve, postnatal depression the list goes on. I truely believed i have paid my dues and this next part of my life was going to be cruisy and the way i deserved it to be.

I have been so angry that i might not see my baby grow up and have babies, get married all those things as a mother you want to see your children do and experience with them. Most of all im angry that my husband and daughter have to go through this as well as it is so hard on them. Not to mention the financial pressure we are now under is just insane and we havent even started treatment.

I have spent sometime searching for someone to blame including myself and the higher powers and come to the conclusion there is no one to blame its just a absolute freak random thing and its happened to me. 1 in 2 million what are the odds of that huh, perhaps i need to look at it as im special to be that 1:)

Stages of Grief 3rd one for me is Bargining.

Well i cant tell you how much i have tried to bargin my way out of this situation. I have tried bargining with drs, myself and anyone upstairs that will listen. Needless to say i havent got far lol. I spent weeks telling myself that i need to try harder, work harder, be a nicer person the list goes on and on. I spent alot of time talking to myself and in my head bargining with a higher power in any spiritual sense.

I have to say none of this has made any sense to me at all. I am a stronger believer in karma and what goes around comes around so i have always tried to do good things in my life because i believe those good things will come back around one day. So to find out i have cancer was a bit of a "what the hell you have got to be kidding me moment"

Reality is it doesnt matter how hard i have tried to live by my karma theory and continue to try and live by it, it sadly hasnt changed the innevitable. I still keep coming back to the same 2 options, dont have treatment and have the treatment. Both options kinda suck!!

Gersons Therapy for Cancer

I thought i would post some of the alternative treatments i have been researching and looking at trying. The Gersons Therapy information was given to me by one of my lovely stockists. The more i read about this therapy the more it made sense. The Gerson Therapy is a natural treatment that activates the body’s extraordinary ability to heal itself through an organic, vegetarian diet, raw juices, coffee enemas and natural supplements. At this stage am still going to do my surgery and chemo but im going to be intergrating this alternative treatment into my lifestyle to give me the best chances possible with my remission.
Im a strong strong believer that if our bodies have the ability to create such diseases then surely it has the ability to cure them with the right tools/diet/lifestyle etc. http://gerson.org/gerpress/

Stages of Grief 2nd is Depression

This seem to be the next on my list of grief, i started just randomly crying to the point i couldnt breathe and hyperventalating. There was some days i just couldnt got to work or had to go into work looking just horrid. My depression seemed to be around no more babies. It was made harder by people telling me well at least you have Paytn you need to do what keeps you around the longest. Yes yes i know people, i know how lucky i am to have my gorgeous daughter and i know i need to do what gives me the best odds but......... it does not instantly switch of that maternal drive that yearning to carry another baby. I have found i have had to grieve this loss and i think i will always grieve in a way for what sadly is not part of my journey to carry another baby.

I suffered badly with postnatal depression after having my daughter but this depression seemed to be different, i still got up each day even though i didnt feel like it, i still wanted to go to work most days or perhaps it was a matter of i had to been self employed, i still wanted to be a mum hard not to when i have a 4.5 year old bouncing around so full of life. But i just wanted to put it all in the to hard basket. I just wanted to go to sleep and wake up in 6 months time when it is all over i just didnt want to have to deal with it. I have endured so much already throughout my life it seems hard to find the energy some days.

I still have the odd day but its more exhausted or stress and i think this is what is making me feel flat. I guess my depression was really quite short lived which is great. I guess what put it in perspective for me was one afternoon my daughter come to me very upset. When i asked her what is wrong she looked and me and said " why cant you just be happy with me mum"? "i will always be your baby, why do you need to have another one" It was at that moment when i saw the hurt and confusion on her face that my crying about what i couldnt have was doing to her.

I still hurt terribly and i cant actually imagine this pain passing i hope that it will and i will find a way but for now ive managed to get myself out of that downward spiral of depression i felt i was on to what i guess is a numb phase. I have told myself that is ok to have a down day here and there and no one can be happy and bubbly 24/7.

Stages of Grief 1st is Denial

Here is the stages of grief i have found, i actually thing they are more emotions we need to go through. My emotions havent necassarly come in this order i have found ive worked through some and still working through others. I think first for me was denial.
Denial (this isn't happening to me!)
Anger (why is this happening to me?)
Bargaining (I promise I'll be a better person if...)
Depression (I don't care anymore)
Acceptance (I'm ready for whatever comes)

I have to say when i was first diagnosed i really wasnt that concerned i didnt doubt i wouldnt get through having cancer i did doubt however ever getting through never having another pregnancy. I really didnt think there would be any stages of grief but there is and here is how these stages have gone for me.

DENIAL: Initially i told myself ok this is happening to me off course it is life just couldnt be simple could it. Then i went into denial and decided this is NOT happening to me and im not doing it. I told my dr i am NOT having a hysterectomy and i was going to do what ever it took to have another baby even at the cost of my health i just didnt care. After all i put myself through 5 years of surgery and IVF to get our daughter then after her a few more years of surgies and IVF so no cancer was going to take what i have worked so hard for over the years to keep. I have never felt so ripped off as what i do all those years of enduring pain to have a family almost felt a waste. Certainly not having my daughther is a waste but the last few years i feel i have lost. Its been 10 years of trying to get pregnant so for it to end like this i just couldnt believe it.

Prognosis

My cancer is a very rare one infact 1 in 2 million people get this its called pseudomyxoma peritonei . There is only one surgeon in NZ that can give me the surgery i need and the chemo treatment. I will need a 8-10 hour surgery which involved having my pelvic wall lining cut and scraped out. I will then need about a 90 min chemo wash through my pelvic cavity to hopefully kill any cancer cells that maybe left behind. The cancer i have doesnt go into the blood stream so the normal form of chemo treatment is in effective. Looking at 8 week recovery time.

I have been told that without the chemo wash there is a 80% re currance rate and with the chemo 50/50. The more i learn about this disease the more it seems there really isnt alot known about it and dr's can only seem to give ball park figures. If it returns its usually within a few years if this happens life expectency is anywhere from 10-15yrs. How much of that is quality of life i have no idea.

The cancer continues to form as a mucus mass and eventually takes over the pelvic cavity and organs. I have been assured we have found it early enough and my chances are greatly improved by this. Alot of people are very advanced when they are diagnosed usually through surgery for other problems.

In a way im a bit peeved that of all cancers to get why could it not have been one that there was more specialists and information available so i could be a bit more informed, but it is what it is and im on a mission to learn everything i can about this. Im looking into alternatives and lifestyle changes i can do to increase my chances so im around as long as i can be. I will be doing some posts soon on the lifestyle changes we are doing and alternatives.

Our Journey with Cancer Begins

Well it has been such a long time since i have blogged anything. Has been a crazy crazy time in our house lately. 6 Dec i went in for surgery for my endo to get it sorted so this year we could begin more IVF after miscarrying out last embryo. I was so excited to get my surgery done and rock on into the new year feeling great. My surgery went well with my new surgeon very impressed with him. They told me they took a biopsy from around my appendix nothing to worry about so i didnt worry at all. The biopsy come back the following week i had a growth near my appendix that needed to come out and again told nothing to worry about.

As the days went on we come to learn that infact i had a very rare tumour that is known as 'cancer of the appendix' It is a mucus forming cancer produced by the appendex. Still i really wasnt that worried, i found a surgeon here in Nelson and they were confident because it was found very early they would just cut it out and my appendix and i shouldnt have anymore problems. The days leading upto Christmas i had a colonoscopy done which confirmed it hadnt spread to my bowl where the appendix joins the bowel. I then had a CT scan done. Christmas was a few days later so we had to wait until the following week for our CT results. I was feeling a little anxious but not to bad. My surgeon rung me the Wed after Christmas to give me the CT results which where all clear i was very relieved and not worried at all.

2 days later on the Friday morning off i went into hospital for what was a relatively simple procedure to have my appendix and growth removed this was my 13th surgery so a bit of a old hand at the operating table. It seem to take me a long time to come to this time around in the recovery room. It was only 3 weeks after my previous surgery so was a bit hard on the poor body. Later that afternoon my surgeon come to see me to tell me she removed it with out any problems but upon going back in for a good look found some small spots which she was positive was the same cancer the biopsy later confirmed this.

I was told i would need to have agressive treatment with another surgery and chemo, oddly i wasnt fazed at all i just shrugged my shoulders and said oh well shit happens. I wasnt suprised as things never go as planned with me so this didnt come as a shock to me, what did come as a shock is the next sentance from my surgeon that the agressive treatment also means a hysterectomy. This is when my world fell apart.

Been told i had cancer did not phase me in the slightest but been told i will never get to have another baby just broke my heart. I spent New Years in hospital upto my eye balls on morphine, having the 2 surgeries so close together was hard on me and my pain levels were horrific. My whole stomach bruised just from keyhole surgery which hasnt happened to me in the passed. I was sent home New years day with a weeks worth or morphine tablets to manage my pain.

I have been told my cancer is a very slow growing one so i have some time up my sleeve to look at options and come to terms with it all.

More to come about our journey in the next few days.