264
264
20

Support Jules with brain surgery

$28,759 of $85,000 goal

Raised by 266 people in 4 months
I am usually the one rushing to people’s sides and offering love, support and assistance. I have always been of the mindset that if I have it, I can share it or give it.

Now I find myself having to write my story and reach out to friends, colleagues and the greater universe as I am in need of support as I prepare for brain surgery on the 6th Dec 2018.

I am a single Mum with a little boy who is just 2 years old.  Unfortunately, my partner passed away just a few weeks before our son Madin was born.  The last couple of years have been tough but nowhere near as tough as the last 5 months as I face life-threatening health issues and prepare for brain surgery. 

Here is a little of my story:  In August 2018, I presented to Emergency with stroke symptoms. I was referred to the Stroke Clinic at Royal North Shore Hospital, Sydney.  During the consultation with the Professor and while looking at my brain scans there was an incidental find of three intracranial (brain) aneurysms. 

Left side: 1 x 8mm and 1 x 4mm. Right side: 1 x 2mm. 

Anything over 7mm is deemed at high risk of rupture and surgery is recommended.   There are many causes for aneurysms and mine could be hereditary as my Great Grandfather passed away from a cerebral hemorrhage.

Aneurysms are present in about 2% or more of the adult population and multiple aneurysms occur in 10% of these.  A cerebral aneurysm is caused by a weakness in the wall of the brain artery.  They are more common in women than in men.  * Source: Brain Foundation Australia

Since the first hospital visit, I have presented to Emergency another two times with stroke symptoms.  On one of those occasions, I was admitted to the stroke ward for several days and I was diagnosed with a neurological disorder, on top of the aneurysm diagnosis. 

I have had some other incidental finds and I am currently experiencing a very high white blood cell count and platelets that have been rising now for 2 months. I am waiting to be given an appointment with a haematologist and oncologist at RNSH. I sadly cannot afford to see a private specialist.

I have opted for a craniotomy and clipping for my 8mm aneurysm.  The clipping option is usually favoured in younger patients as it gives a more permanent solution and a longer life expectancy.  For those of you who don't know what this is, here is a little explanation (I hope it doesn't make you queasy).

An incision will be made behind my hairline, then a section of the skull bone is removed.  This gives access to the lining over the brain. The lining is then opened to expose the brain surface.  Under a microscope, the aneurysm is carefully separated from the normal blood vessels and the brain. The metal clip (like a clothes peg) is attached to the neck of an aneurysm.  This keeps blood from entering the aneurysm.  As a result, future bleeding is prevented, and the brain tissue is protected from further damage. 

The bone plate will be securely put back into place using thin metal plates and screws and the wound is closed.  The metal plates and the clip will remain in my head permanently although the bone plate will heal over 6-12 months. 
 
They can only operate on one aneurysm at a time as it would increase the surgery risks, which are:

* Stroke.
* Loss of sight in my left eye.
* As language sits on the left-hand side of the brain, there is a risk of loss of language – this means speaking, reading, writing, typing.  Lastly, temporary loss of memory.

The risk of not having the surgery is much higher, as the neurosurgeon’s words to me were that a rupture would be catastrophic for me.  I have been on a waitlist for just over 60 days and I received my surgery date today 6/11.  The operation will be on the 6th Dec 2018, which is just a month away,  This time will fly by and before I know it, it will be time to face the fear of such a serious operation33546514_1541506408584860_r.jpeg33546514_1541506726889990_r.jpeg.33546514_1541506358895690_r.jpeg

My recovery will be long, if there are no complications during the surgery or after the surgery, my recovery will hopefully look similar to this:

·     1 week stay in hospital (ICU and stroke ward).  I will be released from the hospital just 2 weeks before Christmas. 

·     6 weeks of bed rest, where I will need help to look after my son, and myself.  I will need to have rehab and I will have Neuro Fatigue as my brain recovers from the surgery. This can be ongoing for up to a year.

·     At 3 months, I can hopefully look for some part-time work, ideally 1 x 4-hour days for 6 weeks and build up to 2 half days and so on. 

·     Within 6 months to 1 year I should be fully recovered and working full time again.

 Unfortunately, I am not out of the woods with this one brain surgery as I have three aneurysms and I will have to carefully watch the two that remain. This will require some lifestyle changes to reduce stress and situations that could increase rupture risk. I will be looking for treatments that could perhaps help me shrink the two that remain. It is rare, but it can happen. I really do not want to face brain surgery another two times.  (Aneurysms grow on average at 1mm a year).

 For those of you that know me, you know I live my life to the fullest. I go after my dreams and I am full of love for everyone.  I am warm and friendly, and I am always ready to help others.  I can be cheeky and love to have a good laugh.  I always look for the positives in situations and I am a strong, independent woman. I can say with my hand on my heart that the finding of these aneurysm has hit me hard and I have been on an emotional rollercoaster.   

 My biggest achievement in life is my son Madin.  I never thought that I would get the chance to be a Mum and in my mid 40’s the universe gifted me with the most beautiful little boy.  He is my life, he is my power, he is my world and I cannot leave him. He is just 2 years old and I would give and try anything to ensure that I am healthy and able to be the strong, healthy Mumma he deserves.  The love I have for Madin is beyond belief and seeing Madin’s little face every day is what keeps me going. 

 I am reaching out on this platform to ask for help as I am not able to work right now or for some time in the near future. Knowing that I could potentially reduce some of the immense financial pressure I am facing will help to reduce high levels of stress, which can potentially increase rupture risk.  To have some financial pressure released will give me the chance to fully focus on my upcoming surgery and my recovery.  It will give myself and Madin the support we both need to get through this. 

 Anything you can spare to help us will be gratefully received. The donations will come directly to myself and Madin and will help me cover medical and daily living expenses.

As I have just been given my surgery date and my surgery is now only a month away, the need is quite timely.  I would ideally like to get some very important things into place for myself and Madin before I am not able to do some of those things myself.   

Thank you for taking the time to read my story and for any support you can contribute either financial or other, I will certainly pay it forward in the future and I am truly grateful.

Much Love
Jules and Madin xxx
+ Read More
And last photos.

With Smita on the way to the hospital.
With Karny just before they wheeled me away.
And a relatively decent shot of me taken a couple of weeks ago.
+ Read More
A few more progress pics
+ Read More
Update 3 - due to limited word count and more photos.

THANK YOU

• Thank you, Dani and Sam, for opening your arms to Madin and I while we waited for a new surgery date. Thank you for helping me find my inner strength again to prepare for surgery. I will treasure this time with you both. I adore you and love you both so much. You are family. (Thanks to Richard for being Madin’s little mate, he loves you).
• A huge heartfelt thank you to Jacqui for looking after Madin and I. You have done so much for us, you have been there for us through so much of this. There are no words to explain how much we love you. You are forever in our hearts and we love you so much, you are our family.
• Karyn, thank you for support and friendship. Karyn and I met on an aneurysm survivors FB page, we share the same surgeon and we both have multiple aneurysms. Karyn, and I support each other through the fear and the surgeries. I am so grateful that we have each other. You get me and I get you. 2 down for you and 2 to go, 1 down for me and 2 to go. I have got your back mate. We are really going to celebrate when we are aneurysm free.
• A big thank you and love to my dear friend Louisa who updated my social pages and individual messages to many close friends during my surgery and stay in the hospital. Thank you for being both Madin’s and my legal guardian. I know I can trust you to make the right decisions for both of us. Thank you also for being there to talk to the night before my surgery, I needed you and you were there, you always are. Best mates for over 20 years. I love you and I plan on clocking up many more years with you.
• Thank you, Smita for taking me to hospital. It was a really hard day for me, and I felt safe with you. Thank you for also visiting me in the hospital and bringing food treats. You have been amazing.
• Lyndel, thank you for all you have done for me/us. Madin and I love you and you have offered us so much ongoing support.
o Hospital visits
o Bringing me home from hospital
o Coming to help me with Madin
o Food parcels
• Thank you to my family for taking Madin while I was in the hospital.
• Maia, Vic and little Jonah. An incredibly huge thank you to Vic, Maia and Jonah who have looked after both of us during my recovery. They have gone above and beyond to help us. They opened their home and hearts to us. They have looked after Madin when I was unable to. They feed him, bathed him, took him to and from daycare, read stories to him, played with him. Jonah has shared all his toys and his Mum and Dad with Madin. You guys have supported and cared for Madin like he was your own. You have shown us generosity, compassion, love and friendship. I am so grateful, you have helped save my life.
• My tribe in Goa, my girls, my dear friends. Thank you so much for all the prayers and the meditation circle, I could feel your love. Nat, thank you for the Reiki and the messages which I took with me to surgery, you have always been able to see my heart and core through Reiki. Thank you, my friends.
• Nikki Gold, you know I love you, I will be there for you when you need me. Since that second emergency dept visit, you have been there for me. Thank you.
• Jenny Buchanan, thank you for coming to see me in the hospital, you had food yummy and healthy food for me and gifts for Madin. You have always been such a kind and beautiful soul.
• Shona, your visits and food parcels have been amazing, you think of everything, you have always been so thoughtful and kind. Love you mate.
• Amanda from BWM to Bali to Brain Surgery, it is always good to see you and have you in my life. Thank you for coming to visit and for bringing beautiful homemade soup.
• Thank you to Sonia, Louisa and Aarti for being my admins for my social pages while I was in hospital and recovery.
• Thank you, Stella, for helping me arrange pro bono legal assistance I had (will, guardianship etc.). Thank you to your friend Tom who helped you lock this in.
• Thank you to Deborah Linwood (Solicitor) at Teece Hodgson & Ward Solicitors (Sydney). Also thank you to Kerrie Batchelor, Paralegal. Thank you both for your patience and of the legal support you gave me pro bono. It gave me the piece of mind to know that everything was and is still in play for Madin and for myself. You have been so kind. I am forever grateful.
• Thank you to those who came to visit, my Mum Peter and Paul, Uncle Doug and Aunty Joan, Blake. Kate, thank you for always checking in on me.
• Thank you to Esther and Djulian for helping me with some personal things in SG.
• Thank you to Alison de la Cour, you were such a great support to me and helped me through a very scary time when I had to have blood tests for cancer/bone marrow issues. This was going on in the background to my aneurysms. Thank you to Simone for sharing my story with your friends and thank you Alison for stepping in to help me.
• Thank you to Katherine Allaway Thayre who is based in SG, a kind stranger who reached out to me and offered to store my personal effects in Singapore. I am very grateful.
• Thanks to Rob Marston, my study buddy. Some of you may know that won a scholarship (Oct 18) to do my EMBA. I am still battling through it even through brain surgery and I am still passing, Thanks for you all your support Rob.
• Thanks to all my friends and the beautiful strangers who called, messaged, emailed and sent me so much love and strength pre and post-op.
• Thank you to everyone who donated time, love, support and hard earned money to my GoFundMe.

I do hope I have not forgotten anyone, I tried to keep notes so that I could thank everyone, but some days it was all a bit hazy and I just do not remember some
+ Read More
Update 2 - due to limited word count. + 3 more photos.

So here is a little run down of the last 7 weeks after being released from hospital:

• Week 1 – I slept this week away, I was in a lot of pain and I had no energy at all.
• Week 2 – pretty much more of the same. Lots of painkillers and lots of sleep. I really do not remember much of the first 2 weeks out of the hospital.
• Week 3
o I started to wean myself off some of the narcotics so I could understand what I was feeling. The drugs made me very drowsy and I wanted to be able to feel. I could feel sounds (bone) and movement along with pain in my head.
o I got an eye infection in my left eye (surgery side), and I went to the local GP who was an ex Neurosurgeon (in the Philippines). This GP is a lucky find, as he could really understand how I felt, and I was able to ask him pertinent questions.
o I had my first outing. I went to the park with Maia and our boys. It was really great to be out. I had a coffee and watched the boys play in the park. We were out for about 1 hour but oh my goodness I was so exhausted after this little outing.
• Week 4 – I attempted to attend an appt that was made 5 months ago with a gynecologist at RNSH. I thought to myself how hard can this be? Well, I was sadly mistaken. Within 10-15 mins of being on the train, I felt nauseous and had to breathe my way through the trip. I finally made it to my destination and threw up on arrival. It was too much for me and too far and too soon. Thankfully, Karyn and Ed were able to come and pick me up and take me home again.
o The outcome of the appt with the head gynecologist – cyst on my left ovary. It needs to be removed and in normal circumstances, this procedure would be booked in. However, it is keyhole surgery and you are inverted during the surgery. The head consultant advised me against surgery. He told me I am high risk as I still have 2 aneurysms in my head. He said I had a much higher risk of a rupture or hemorrhage and stroke from this surgery. The risks of not having surgery – the cyst could twist my ovary and cut off the blood to it and it will die. This will be excruciatingly painful, and it will require emergency surgery where they will likely remove my ovary. I will still face the above mentioned risks. His advice to me was to get the remainder 2 aneurysms dealt with quickly and get a surgery plan in place. Once this had been sorted, he will happily operate on my ovary and remove the cyst.
• Week 5 – I have a little more energy and so I have been able to engage more in looking after my darling little boy. It is tiring but it has been really good for Madin and I to have one on one time again with each other. I also managed a couple of outings out this week with a friend and Madin. It was great to get out but at the same time tiring.
• Week 6 and 7 – I have a little more energy from day to day. Some days are much better than others. It seems that if I have a couple of good energy days then I need to back it up with an entire day or sleep/rest. The swelling in my face reducing week by week. My left eye is not fully open nor is it the same shape as my right eye. I have started to feel much more emotional in the last 2 weeks. There have been floods of tears. I feel lonely and isolated, I miss my old life and I want to jump into my new life. I really need to take some time to step back and see where I have been and breathe. I have made it this far, but I feel like I have lost some of my strength. I need to find my strength again.
• Week 8 – next week 7th March I have my checkup with my surgical team. I am excited to see Dr Assaad and thank him for saving my life. I am scared, but I know we need to talk about future surgeries and plan ongoing MRI’s. I know this half of my life will be lived differently, I still have the threat of losing my life hanging over my head (pardon the pun).

Current Conditions:
• I sleep a lot as the neuro fatigue (similar to chronic fatigue syndrome) is really overwhelming and not easily managed. I get tired very easily. Some days are better than others but when I have to sleep, I sleep. At this stage, I do not know if this is permanent.
• I have lost my peripheral vision in my left eye. This was explained to me prior to surgery. At this stage, I do not know if this is permanent.
• My spatial awareness if off. Everything feels really amplified, my balance is off and I can’t actually determine how far fast, slow or close something is on my left side. I need to turn my head and body slowly to see things on my left side. I think this has something to do with the vision on my left side.
• My head scar is 17cms long, and it is healing really well. I cut my hair short before my surgery so it was styled to cover it nicely. The left side of my head is numb. I have to give the nerve endings time to heal. There are stitches on the inside of my head and they can get really itchy and it is annoying.
• I still have some swelling on the left side of my face and eye. The muscle was cut next to my eye and so this affects movement. I cannot move my left eye properly, I can’t wink, or raise my eyebrow. Chewing can be painful, I cannot open my mouth widely. I am using a teaspoon and kiddies fork. I will need to wait around 6 months or so for this all to settle. Until then I need to be kind to myself when I see my reflection.
• I do have some short term memory loss. I do not know what I have forgotten until I have remembered it. I have little aha moments.
• I do take a little longer to respond to questions and situations and mix my words/thoughts up but I get there soon enough. I assume this will improve as I get better.

All of the above current conditions, although a little difficult and uncomfortable they are the best outcomes I could hope for. I can see, I can speak, I can walk, I am not disabled, I am here, I am ALIVE. Thank you to everyone who showed me love and gave me strength. Now let’s knock on with the plan to deal with the other two aneurysms and I pray I will be as lucky the 2nd and 3rd time around.

With more time to rest and recover and to regain physical, mental and spiritual strength I hope I find my way in life again. I am going to take a little more time to heal and reflect deeply on this time before making any decisions about my next steps. I hope, a bright new path will show itself to me when I am ready.

Thank you with all my heart, I have been shown true friendship, kindness and love.

Love Jules and Madin xx

THANK YOU
+ Read More
Read a Previous Update

$28,759 of $85,000 goal

Raised by 266 people in 4 months
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
JB
$80
Josh Buchanan
12 days ago
PE
$50
Peta Eglitis
20 days ago
PM
$100
Priti Mehra
21 days ago
DW
$150
Danny W
1 month ago
EF
$50
Emma Friend
1 month ago
MF
$100
Michelle Faherty
2 months ago
DH
$50
Dale Hutson
2 months ago
SS
$100
Simon Sumner
2 months ago
CE
$500
Chris E
2 months ago
$45
Anonymous
2 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.