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Help Heather

  • 11 April     11 April 2016
    Posted by: The Trusts

    Cant believe this was me 7 months ago....counting down the days till i got off the steroids and complaining about the measly 8kgs of weight i had put on. But now 40kgs heavier and 9 months on steroids!, Its crazy the amount of changes i have gone through, both mentally and physically.

    I had my oncologist appointment on Friday last week. I wasn’t able to get many answers as theres not many answers he can give me without a scan but he did recommend a few more places to approach to fundraising and said he will book me in for some scans over the next month before I see him again. I am back on chemotherapy, was hoping the 6 months ive just completed would be enough but I suppose ill wait and see what the next scan says…and hey itl help the anxiety at least

    Its been a good 10 months since I was rediagnosed and I feel like everythings been thrown at me but ive found a way to crawl over it. I feel like i have gained so much from this journey, the strength i have found, watching my daughter get through this with me, the friends i have made, and being able to put aside my pride and be able to accept the help that has been offered. Its changed me, for better or worse im not sure yet but i feel like im a hell of a lot stronger,def more compassionate and so sooo proud of my little girl!

    Yes i have my moments and my tears and unfortunately this is where i come to vent but u know that once those "moments" dissapear and the tears dry up im ready to face another day, and thats all i can do at the moment. I dont have control of this disease but i do have control over how im gunna live with it.



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  • March 31     5 April 2016
    Posted by: The Trusts
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    In the last 5 weeks you guys have helped me raise another $10,000. I'm at about $22,000 with more in the pipe lines. I just want to thank u all, you honestly don't know how much this means to me!!

    I'm hoping to start the treatment in another month of so! The oncologist just wanted to make sure I have enough money to have treatment approx 3 weeks apart and with each treatment costing roughly $8000 if we can keep going well with the fundraising I'm hoping to be able to start it by may!

    I've noticed over the last few weeks with jars and sausages sizzles has really made people more aware of what I'm going through and daily I'm being asked by customers and the likes how I can be so brave, and still be smiling but im not....I'm not brave,I'm scared as hell and yes at work I am always smiling but that's thanks to my amazing boss jo and the other people I work with who are always there to listen when I wanna moan or give me a hug when I need one!

    But to be honest my family ends up bearing the brunt of it all. I know my mum doesn't have Facebook but I just want to thank her for always putting up with my moods and being there for me and my daughter and for actually understanding me. Some of the best memories I have are of her and my daughter together, it's a magical bond they have and she's not called crazy granny for nothing lol

    I have actually made myself (and yes I did have to call them myself) an appointment to see the oncologist next Friday. Not sure what the next course of action is now that I have finished my 6 months of chemo but I'm guessing another month and some more scans while I second guess any headaches and a whole lot more anxiety but I will keep u updated :)

    Lastly I want to leave you with a quote that i recently discovered that explains what I've been trying to people that have asked me how can I be so brave? This says it a lot better than when I try to explain it but it's how I feel and maybe having a younger brother who was born and is severely disabled has put things in to perspective and made me grateful for the years that I've had so far! He may be disabled but he's known for his smile!


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  • March 18     5 April 2016
    Posted by: The Trusts
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    Feeling a bit deflated at the moment. I know at the end of the day I have to remain strong for my sanitys (and daughters ) sake if nothing else but some days i just dont want to do it! I want to scream and shout,throw my toys out of the cot,sit back and cry until I physically can't anymore! I want someone to be there to hug me when I'm having a shit day but not tell me that everything's going to be ok... I would rather the silence and having someone hold my hand than trying to come up with the 'right' words that u think I want to hear or that make u feel better for saying them. It doesn't...

    This last month has been soo hard. I've been messed around by every medical professional (yea right) I've seen or spoken too,I honestly don't know whether I'm coming or going or what the next plan of action is at this stage!I've been so tired but I keep telling myself that I gotta keep pushing's the only thing I have control over at the moment.

    I do appreciate the kind words, the donations and all you who follow and read this page. It certainly means a lot to me and I am ever so greatful!! We are nearly halfway with the fundraising,slowly getting there but at least we are heading in the right direction so thank u!

    I'm hoping to hear from my oncologist shortly and when I do i will update with what I'm supposed to be doing in the meantime xx

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  • Just an update for all you watching this page...     12 February 2016
    Posted by: The Trusts
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    I had my initial consultation about the Avastin tonight ($460 later!!!)Was great to finally get some more answers about it all and the oncologist is happy to send me a quote in the next few days so I can see exactly what I'm looking at,but with my weight and the pricing it's probably going to be roughly $80,000 for a full 10 treatments,then after that every treatment of Avastin i have for the rest of my life will be free.

    He did say that there is a chance my adrenal glands may not switch back on as I have been on the steroids for quite some time meaning I may be stuck on them but it's only a chance at the moment. Feeling a little disheartened but I guess now I need to focus on raising this money as quick as I can! It is my only chance of living a semi normal life again and to you it may be a "chance" but that "chance" means so much to me. It would give me my life back and Ayla,her mummy....

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  • STEROIDS ARE EVIL!!!     25 January 2016
    Posted by: The Trusts
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    I have been on them every day for the last 7 months and the changes in my weight and size has been crazy and uncomfortable....Not to mention all the other side effects (insomnia, weak muscles, acne, dry skin etc) The weight has been the biggest problem, I struggle physically to get out of bed, bending down and getting back up which I do a lot of at work and I suffer from sore knees, leg cramps and swollen feet. Ive gone up 4 sizes and buying clothes is getting very frustrating and expensive!

    Last week I had 2 scans, an MRI and a PET-CT scan. I had my neurologist appointment on Friday and while he doesn't think the tumour has progressed, the swelling in my brain hasn't gone down much if at all in the last 7 months. Leaving me the option of staying on steroids or fundraising for a drug called Avastin, which is a non funded drug that slows tumour growth by preventing blood flow to the tumour as well as stopping the leakage which would mean no more steroids and slowly returning to the old me! Most of the tumour at this stage has low or no blood flow to it but there is a small area that still does so the Avastin would def be helpful for both reasons.

    I have avoided all photos over the last 7 months. It makes me feel very uncomfortable, so for me to post these photos is very hard but I just want you to see the physical changes I have had to go through obviously as well as the emotional stuff.

    I am so thankful that work (The Trusts) has got in behind me and has made amazing efforts to help me fundraise so I just want to thank them all from the bottom of my heart as well as everyone who has donated, or even just shared my story.

    Following pics is one of the last pictures of me in may last year enjoying the last of my holiday before the tumour was confirmed and treatment started in june. The other 2 are of *sigh*

    Sorry for the moan, on the plus side I have spent an awesome weekend hanging out with family at the beach but having to hide in the shade as my medication doesn't allow me to be in too much sun!


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  • Thank you from Heather     18 December 2015
    Posted by: The Trusts

    I just want to take the time out to really thank all you guys who have donated, or even just taken the time to read my story, messaged me etc. I work for an amazing company who have offered me the help to fundraise for this non-government funded drug and while it is a little overwhelming I am extremely greatful!

    Theres a few people I would like to personally thank. My boss Jo and the team at Lincoln centre, without the support I probably wouldn’t still be working, Mark and Aaron who originally came to me and also Michelle for coming out to get my story and for working on things behind the scenes. And a big thank you to everyone else that has been involved in this. It really means so much to me.

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