Seeking blessings to help an Aussie mum keep battling
Donation protected
Blessings to you all. My name is Jenna Maree.
I am 45. Living in Northern NSW Australia.
The short reason I am here -
After facing and fighting stage 4D metastatic Melanoma to the brain, lungs and thigh for the last 18 months, ongoing, I am in need of a device that will assist my life, lower pain levels, assist with emotional balancing and help me continue to fight for my children, my family, my grandmother, my father and my community.
I understand not everyone can financially assist... Believe me .. now I totally understand
BUT
Every one does have a minute to share on your social media profiles, emails, friends and families.
I KNOW there is always someone out there willing and able to help ❤️
God bless all of you taking the time to read and share my story
***********************************************
I always thought we were a normal family but it appears... we are not!
I am a carer for my husband. He has severe damage to, well most of his body, they expected that he would be in a wheelchair by now, 20 yrs later, but again, it just shows you the determination of our spirits and how we choose to fight.
But he really cannot do a lot of the basic things that most of us do such as hang out the washing, drive of long periods of time, even getting out of bed for him some mornings gives him a lot of pain.
I'm also a full time carer for my autistic 11 year old son Archie.
Anyone with autistic children, you totally understand and no explanation needed right.
Joining the crew is my 25 yr old Bailey (who lives 4 hours away) and two other young daughters, Ginger-Lillie and Poppy, 12 and 10.
We rent a small property and have a kinda hobby farm but living rural and this cancer journey, it has taken me to and from over a 9 hour return trip for medical assistance at the Gold Coast hospital every time I have needed an operation, treatments, scans, several hospital admittances and the list goes on and on.
Sometimes I've been gone for two weeks at a time.
Plus... I'm not able to drive which has lead to an even bigger struggle.
Living rural, we have no buses, trains, teams or taxis.
We are a low income family with my husband being on a disability pension.
And living apart most of the time, it is even more of a struggle, how does a career care from a distance while going through cancer???
BUT the Lord is good and even though I've been unable to work and breed my chickens, which gave us our income, in the last 18 months, savings account drained through this journey, we have had everything we needed, my friends out here have been amazing in assisting with the children, and on hand whenever has been needed.
Now, one thing I do know,
We have not...
Because we ask not!
This is the reason I reach out to you all now...
As mentioned, I am now in a position that after 18 months of operations, treatments, steroid treatments,poking and prodding, my body is going into shut down mode.
The pain I now feel is actually, well is not nice, on the edge of horrid. I don't like using painkillers and opioids, who wants to parent their kids all dopey and drugged out? I try to stay away from them and would actually rather use other measures to assist my body, a body that is already full of immunotherapy, chemo drugs, steroids and the list goes on.
Plus, I'm not used to sitting down... Those that know me will tell you this. I am adhd structured and always running after the kids, filling my plate with homeschooling the children (which I sadly had to give up due to all this) teaching SRE at the local school, running the community kids club for the towns children, leading homeschooling groups and my house table was always available for a meal if you rocked up at my door.
I am struggling with lack of independence due to not being able to drive, especially out here.
I can't loose my body movement too!
I am in need of what is called a PEMF mat to assist with this pain to keep my joints from locking up, plus it has also shown to help with emotional function.
You see... I NEED TO MOVE. I'm really struggling physically and emotionally not being able to be... Me.
This has been recommended to me by my rehabilitation specialist.
You can get PEMF mats in Australia and there are many on the market BUT the one I need, that works on frequencies that will help with my pain BUT NOT effect my tumors, plus has added frequencies recommended for my condition, is supplied by a US company called pure wave for those interested in looking.
Yes I am special, very special ha ha ha
My oncologist is seeing this.
I've had all the conventional treatments the medical umbrella has to throw at this demon, and my reactions have been far from 'normal'
Again, I can't thankyou enough for reading just a small part and overview of my story if you have gotten this far.
Thankyou for you donation to well... Me and my family
We are not great BUT we try to be great doing it.
Whether it's your time sharing or donations
It's greatly appreciated to help this 'normal' Aussie mum, keep sharing herself with her family and her community.
You can follow my journey from the beginning of you like on my Facebook page
Dragonfly Diaries
I will attach a copy of my written journey below for those whom would like to read it.
God bless
I love you all
Jenna Maree
My journey started the beginning of September 2023.
In hindsight it probably started way before, like the weird feelings of the tightness and pressure on my head when I wore my sunglasses or perhaps a hat, my tired eyes that would go blurry at night time,
But as a carer with 4 kids, their dad with a disability, 1 autistic, a small farm, running various community projects and teaching scripture in the local schools, I just kept going.
The first major sign that led me towards my cancer diagnosis was a series of headaches that felt like sinus but ran down into my neck. I had been sick with covid, cold and flu, and was just generally feeling run down. I approached my doctor and we had looked at everything pretty much in the previous year. I'd had a ultrasound performed on breasts for some lumps. Was regular with my pap scans. Had had external and internal ultrasounds in that area due to my menstrual cycle just being out of control, there was a theory that it was perhaps early menopause but there's no test for that. I had a clear chest x-ray only two weeks before having a full body CT. All my bloods came back normal and I think my doctor was starting to look at me like I was a hypochondriac. Inside myself, I just felt the need to turn a new leaf almost and have a health kick. I started making my own vitamins and supplements. We live on a small farm and have been raising our own meat, which has been easy to keep out some if garbage from our diet.
The headaches got worse so my doctor gave me another round of antibiotics and in that appointment, I remember telling him that I was concerned because my mother had died from a glioblastoma brain cancer, almost 5 yrs prior.
And that my friends, is the hardest process I've ever had to watch. My beautiful Mumma. Her journey was short.
Way too short. But not without, love, joy and glory. So much condensed into such a short time. I know this is meant to be about my story, but she is my story and I am hers. The events that surrounded my mum's diagnosis and everything that happened in the lead up to getting her to hospital was truly and totally obstructed by the good Lord Almighty. I say obstructed because in my case... It truly was.
Sept 27th 2012
I was over the moon! I was going on holiday, alone, no children, husband and I were separated at the time so he would have them for 9 days so I could go to see my best friend from teenhood, for her 40th birthday. My beautiful gal Linda.
It would be a 15 hour train ride. I was ecstatic and couldn't think of anything else better to do than just sit and read a book, nap, enjoy watching the Australian country side go by and take it all in, in my own headspace. Having the last three children so close together made my life extremely hectic 24/7. You can only imagine my excited anticipation.
But...I had to get to the train first. 4 hours drive away. I had almost finished packing all our bags the evening before i was due to leave when my two dogs, and blue staffie and a great Dane cross rottie mastiff, xena and Floppysy, decided they had other thoughts for me. They had in the past always been perfectly well behaved, but on this evening , before such a great adventure awaiting for me, they decided to have a bitch fight, right at my feet in the outdoor laundry of the old Presbyterian Church manse we were living in at the time.
I jumped on to the washing machine and freaked out! I had never been a witness to a dog fight before and was just in sheer terror over how the girls were ripping each other apart! I somehow made it out of the outdoor laundry and for the hose .
I don't even know how I managed to separate them but once the process was complete and I reassess their injuries I had to call the night time, weekend vet. Tragic. This was going to set me back months of saving for this trip. I was torn but after a few hours in town with the vet, some cream and some antibiotics we were sent home.
The following morning I was in such a panic. I hadn't finished packing the previous night. After the vet trip, I put the kids to bed and crawled into my bed like an exhausted sloth.
In the morning I called the kids dad Aaron in a fluster. I was running late and I can't express to you all HOW excited I was. I don't think I'd been on a holiday, on my own, no kids, for about 16 yrs by this time.
I remember Aaron saying in return to my flustered frustration that I didn't need to leave on the train until the day after so I could wait, and leave my car trip until the next morning if I wanted.
Now this may sound like sensible reason but not for me that day. Nothing was going to stop me being early. I'm always late! And I needed to be there with Linda.
My response to him was just that.
"No Aaron I can't leave tomorrow, what if something goes wrong with the car, tyres, overheats, or or whatever... I can't run the risk of being late for this train"
And so it was decided , a few hours later, just after lunch, the 3 Bambinos and I take off for the coast..
Almost!
Low a behold, the throw away comment I had made about something happening to the car, came into existence. Half way to the coast, with a four, five and six year old in the back, traveling at 100kms an hour, threw it breaks on all by itself. I gasped. The issue centre resolve but moments later it happened again and again and again. I was starting to break down.
There was an old mountain man we knew at the time leaving in the bush about 30 k's down the road so I took the risk and slowly drove to his place as he knew about automobiles. He let me in the kids hang in the shed while he took the car for a drive and even when he came back his face was a little bit white and was unsure of what was causing the issue. I was left with no option but to call the kids dad, to ask for a lift. He drove all the way from the Gold Coast out to Mummulgumto collect us. You finally arrived to his grandmother's place where we would be camping for the evening before heading to the train station at about 5 pm. My bestie called me and told me that she had had a dream the night before, that I had missed the train and was unable to get to her birthday. I assured her I was going to arrive at the train station two hours earlier and there was no way I was going to miss this train, or this holiday, time to sit on the train and read a book time, to just sit on the beach with her and enjoy the sunshine and the beach!
We settle down for the night, so much anticipation and excitement but so relieved I was closer to my destination.
The next day is promised I was at the train station two hours before my train at approximately 11:30 am.
And I was met with more hurdles.
I was informed at the ticket window when I went to collect my ticket that due to the imaginary line of the Queensland New South Wales border, that my concession did not apply being a New South Wales resident travelling on Queensland transport. The price of my ticket was going to increase times 10, an amount I did not have.
As I had only recently moved across the border I assured the ticket operator that I still had government documentation with my Queensland address and that I would bring it down to be able to purchase my ticket.
In a flurry I ran back to the car and told Aaron he had to drive me to my mother's place ASAP as I only had two hours to get the train.
I couldn't believe it!
Like a bat out of hell I ran into my mother's house explaining the situation asking her to find my mail, so not aware of anything really but myself and my current situation.
It was AFL Grand final day and our favourite team Collingwood was playing.
My grandmother father and everyone was at the house really in preparation for the game. My grandmother had been staying there is she had recently come out of hospital and my mother was caring for her. My sweet mother always caring for others more than herself. I was aware that she had been having some vision problems and things just weren't quite right but she assured me that she had had her eyes tested and she was returning to the doctor next week when I finally enquired into how she was.
While I was in drawers and cupboards looking for mail, my mother toddled down the driveway to ask Aaron if he had the extra money to send me because she said I deserved a holiday, bless her.
He apologized and said that he didn't have the extra cash and agreed with her, I did need a break. She slide out of the car and toddled back inside the house. By stage I had to admit defeat, I had missed the train. Why could I just have some time out away from my kids man!
I booked the train for the next day which just meant I would be a day late for birthday celebrations but providing I could get on the train I took that as consolation.
Throughout this whole process I've been on the phone to my bestie and her family and I had been praying about it all. Her parents, my second parent, Jim and Deb called later that evening just as we were settling back down into Aaron's grandmothers house, they asked me if I could get to the Brisbane airport at 5:30 the next morning which was very doable as I have a friend who is an Uber driver. With that they stood in prayer with me against whatever was stopping me from coming on this holiday and bought me a plane ticket to fly directly to Airlie Beach the next morning.
Woohoo... I was all set to go!
Excitement started to build up again and the possibility started to become real again so I called my mate, booked the Uber and everything was good to go. I was flying to airline Beach for a week!!!
I then messaged my mother to tell her what my plans were. The only way to describe the response was gobbly goop. They were words but they made no sense. Then Aaron told me about her heading down to the car to see if he had the extra funds for my train ticket. You see the thing is my mum is an absolute neat freak and my husband is a grub. My mother was NOT shy about expressing her feelings over the conditions her grandchildren were kept in usually. Her usual first response to his message would have been "Aaron! This car is a mess and my grandchildren travel in the car!" Ha ha ha God bless her.
After thinking and debating my mother's health issues with my husband, I concluded something was not right. That instant sinking feeling shudder through my brain, then body. I took a snap shot of my mother message and sent it to my grandma (who we lovingly refer to as Gg, pronounced Gigi for great grandmother to my children)
It all started from there.
The phone called to n fro between my Gigi, sister and father who were all at the house with my mother. Her speech became jittery, memory vague, so it was decided to call ambulance.
Then the decision to cancel my holiday.
With great sadness and dread I called my bestie and told her, her dream was correct. I was not coming. There was nooooo way I was leaving my mum.
I was so focused on myself but all along, through all the obstacles, God lead me here, beside my mother.
I could keep going on and on about every single moment. Mums journey was short. 21 day short.
The hospital did their best to get as much info in the way of bloods and scans. Though mum is catastrophic, and allergic to the contrast in the MRI and CTs.
Scans showed a large tumor at the frontal lobe.
The next 21 days are a blur.
I thing she was in hospital for a week having tests, home for a week, had a craniotomy for a biopsy and then was home 3 days later. That's when it all happened. Something that no one can prepare you for. The very fast decline of ones mother. Anne Seymour-Smith, an amazing artist, art teacher, comedian, over achiever in the art of motherhood and being a wife. While the actual physical pain I felt the day she went into the Lord's hands, isn't there anymore, there is always a tear and a gasp when I think of her and her wonderful ways. She did the best with what she had and aced it that woman.
This whole time I had pulled the kids out of school, dropped my life in Tenterfield and stayed with her every second I could.
All these event I say now all happened in the few days we had her home. When we left the hospital, doctors told us to plan until Christmas, maybe her birthday in January. It was mid October.
That week was filled with mixed emotions.
My mother had almost reverted back to a koi teenager and the way that she gushed and spoke about my father was so beautiful, heartfelt and wonderful for a daughter to see. Their memories of how they meet, loved and fought together in there 38 years together.
One evening, as a family, myself, sister, Dad and mum were in the lounge room and she just commented "I'm going to die aren't i?"
We were all brought to tears over how to answer that question and what the future held in store.
Funny thing was. My mother always knew she would not make it past her 60th birthday. She had confided this to me quite a few years previously, which I dismissed as her anxiety.
3 days after having her home, we were meant to have her back to the hospital to have the staples removed from the front of her head.
We never got her there.
That day, she started by not being able to get out the bathroom on her own.
Admittedly, she was not eating much, she had no appetite, prawn crackers do t give you to much energy much she didn't want to eat anything else. Her taste buds were changing.
My dad popped her into bed.
Reality hit hard.
When we left the hospital we were informed we would get a phone call from palliative care in a few weeks. I could tell clearly we didn't have a few weeks. I spent all that Wednesday on the phone begging and pleading and explaining to anybody who would listen, my mother's symptoms and case. Finally I managed to find someone to come around the next day, at clinical nurse from anglicare to assist.
They had taken her off all steroids and had only left her with some oxycodone and Panadol. Due to her now, inability to swallow and it was clear that she was going downhill fast, the nurse that arrived, I think was in a bit of shock herself at the situation.
She put in a IV line, gave us instructions on how to wash and care for mum in the bed, that we had to turn her every few hours and basically left us with liquid oxycodone and instructions on how to inject my mother's painkillers into her every few hours.
What an education lesson to have to learn in my hurry.
The three of us were left in complete stun, amazement and awe.
That's when we rang the family.
And I have to spread the news that the process had started.
Thursday was much of the same. Just learning how to work around the clock with each other in medicating mum, attending to her basic needs, making sure her IV line was clear and fluid was going in.
By Friday nun of us had slept for days and days. I spent all morning on the phone looking for somebody to give us some respite care so that the three of us good just have a decent sleep and know that someone was watching her.
Right now, I can't remember her name but God did send us an angel that night.
It was around 10:00 p.m. and I was dozing on the couch, I had to come through the door and talk to my sister. She asked if she was late and if she had missed the previous nurse. My sister laughed, and told her that she was the first nurse we had seen. As she glanced over the dining room table and saw all the class eight drugs sitting on the table, her immediate alerted response was "wake your sister up now!"
She proceeded tell us that in the short term she had been there she could hear my mother groaning upstairs, then after we told her the procedure we had been following that the amount of morphine she was on wasn't even enough to effect a mouse and that she was probably in great pain. She jumped on the phone and got authority from a local doctor to increase her morphine and he jumped in the car and headed out to assess mum.
They didn't give her a good prognosis and didn't expect her to make it through the evening... But my mum is a stubborn lady.
The nurse sat with us all through the night, myself, Dad, sister and Grandmother. My oldest son was also living with them at the time. She explained what would happen to the body when she past. It's hard to explain, surreal, confronting, comforting, scaring and honorable.
When she left the next morning, she said to me as she left "Your mum is one though cookie"
I told her " you watch she won't die today. Today's her brother's birthday and she is too sacrificing to leave him with the memory of her passing on the same day as his birthday."
She assured me that she would call later that afternoon and if mum was still alive she would join us again that evening for some respite.
By this stage we had all had a moment alone with her to hold her hand and say goodbyes or whatever it was that each individual needed to say.
My grandmother had returned home and everything actually seemed quiet for the day and mum's old to a good and she seemed peaceful. We have all seen miracles and so that's what I know I was looking for that day.
The nurse arrived again that evening.
All of her stats look good and we almost settled in for a choir evening.
I remember so being in the bedroom together and the nurse suggested we all step out for a much needed coffee or tea break. It was Ali for the shortest moment and then the nurse called us back upstairs in a voice that I loaded us to the necessity and agency of the situation. I have to say confusion went through my brain as there was a moment when the nurse said she had passed but her body still kept breathing. Band of Jesus had reached down and she had grabbed it and he had pulled her into his arms. She had passed. From our very real tangible world, out of our fingers and into the hands of God.
My father, a very gentle placid man, punched the end of the bed head in absolute despair and agony. To see him in that much pain just broke me even more.
The instant jump from losing a loved one at home to having to preserve the body until the Corona can pick her up I was a strangle one. To see here there, but not he there. She pass it around 130 in the morning and being a Sunday night no one was available until about 9 o'clock the next day. We sat around her body and we held her chin in place before ricamortis could set in.
We held her hand and took photos.
Weird the things we do.
Trying to hold on and capture every last moment we had with the physical being that is my mum.
What I've come to conclude is that funerals is only for the living.
The money making scheme of deception to rob somebody blind in their grief.
But that's a whole other story.
There's really not a lot of time to mourn when you're trying to plan a funeral for somebody who has no will no power of attorney know nothing put on paper, so again a family got around and we did the best that we could and knew how to do and we would have made her proud. The funeral auditorium was full overflowing and people had nowhere to sit. She touched so many different people from all walks of life with her love kindness, generosity, giving, quirky sense of humor, and most of all have blunt honesty.
As the Herce drove away I told my children that this was the last limousine ride grandma would ever have. My then, 4 year old tried to run after it screaming.. "I dont want to not see my grandma again'
Heart wrenching.
And then Life goes on.
And it did go on without her.
And now I'm here, in similar shoes, but I don't have her around for advice on the topic.
Back to my doctors appointment
He suggested to take the round of antibiotics and if they did not work, come back to him and he would send me off for a CT.
September 18th is my youngest one's birthday and we invited the whole school after school for a party in the front yard. Praise the Lord it is a small small school with only 17 students ha ha ha.
But I remember barely getting through the afternoon with this horrific pain that went from my forehead down to the base of my neck. It wasn't like the pain that somebody felt after being hit in the head or a headache, it's a pain that I can't even describe.
Friends around me noticed that I was struggling and I had been for probably about a month, at the time I was running the local kids club on a Wednesday afternoon and I think the Wednesday previously I was struggling also.
I returned to the doctor he gave me a form for a CT. Now being rural, it's very hard to get into anywhere quickly but they had a cancellation for the following Monday which was only a weekend's wait!
I remember going for massage on the Friday afternoon thinking I might just need to fix something in my back, crack something or move something and over the weekend I felt wonderful.
Come Monday, well, things we're not so great again. A slight pain was back but I still felt ok.
We had to cross the border and go to a bigger town, in comparison to a big city, it's only 40 km.
I've had a CT before so really wasn't a big deal and as I was still feeling pretty good I went home and pretty much the resumed normal life. The doctor called me Tuesday afternoon and said he wanted to see me on the Wednesday morning, never a good sign I thought. I told him I'd already booked an appointment for 11:00 a.m. but he wanted to see me before he opened a surgery at 9am.
Next morning was usual. Got the kids organised for school but 7: 30am, my husband's phone rang.
My doctor was requesting that he drive me in and accompany me to the appointment that morning. I think that's when the Dread hit me like a brick.
We drove in silence to the surgery.
Oh my poor doctor.
I will admit.
He delivered the news quite well and gracefully, for a lack of better words.
But when we sat down in front of him, his face said it all.
He sighed and doom fully shook his head and said "well, this is life changing news."
He proceeded to tell us that the CT had shown a large tumor of the base of my brain.
I don't think he knew what to say, and obviously there was no more information to give at that stage but straight away, he was on the phone, saying that I need to have a full body PET scan ASAP.
God bless his amazing work!
He organised for me to have a full body PET scan, on the Friday afternoon, on the Gold Coast....284kms away.
My husband took me half way where my father collected me and drove me the rest of the way.
I was originally born on the Gold Coast so at least I had a good support system there. My Ma Deb. (My besties mum) also met us at radiology in Southport before the pet scan.
I guess I've never really liked the attention on me, except when I've been on stage, throughout this whole process I think I've just smiled and nodded, accepted, and kept walking.
Ahhh... How missed the stage! The last performance I had participated in was right before covid hit Australia shores. Over dedication I put into that production. I would drive from Tenterfield every Sunday, the 4 hours for rehearsals and travel back on the Monday. For 3 months I did that. Christmas 2017 and I will mention I barely managed to get through the last performance of the two week season without coughing and splattering my head off. At that stage there was no such thing as a covid test but I'm pretty sure my husband and I were some of the first people to actually get it in Australia. We felt like dogs and laid on the floor in front of the fireplace back in tend to field for almost a full week. I don't even remember what the children ate. I miss acting. It's been something solid throughout life, an escape to be whom ever I need to be, to play and experience different scenarios and emotions I may not have experienced in real life. To be creative. My claim to fame.. one of the small achievements I guess. I was the yellow pages girl for 2007 on the adds.
Memories.
Sweet memories
Anyhow
I can't explain any other way but after the CT scan, in my grandmother's wisdom, I ask the radiologist what my next step should be as I lived five hours away.
40 minutes later I got a phone call from the head radiologist in Sydney.
Quite urgently he told me to go straight to Gold Coast University hospital emergency department as the tumor on my skull was 3.5x2.8cm and what was causing the pressure and headaches.
I remember being in the car with my Dad in the car, on the way back to his place on the coast, he asked me what I wanted to do, and just like on many occasions in my life, I told him I wanted to go home, pack my bag and process it. Then we'd go to the hospital. It would give the guys at radiology time to send my files over to the hospital and get prepared for me anyways.
To be honest the first thing I wanted to do was go and have a cigarette! Take a moment alone to process everything.
It was to the day five years after my mum had passed away that I was diagnosed with a brain tumor. I was devastated. Shocked and I think more worried about how my family would handle this news, it was just like history repeating itself again and again and again. Without going too much into it because that's not why you're here but my mother and I have strong similarities of abuse in our histories.
So I sat for a while, did what I said, packed a bag and got Dad to drive me back to the hospital and by that time my files arrived and there were very quick. They got me at the back, put me on a drip and gave me dexamethasone, admitted me upstairs in a room by about 1:30 a.m.
I can't say I had a problem sleeping that night. I think I was so exhausted beyond belief that I crashed hard. But as usual, the hospital routine makes you wake early in the morning, to blood tests and cleaners and doctors. Mind you, I had been admitted on a Friday night so I didn't get to see or hear from anyone about my case until Monday and even then it was sketchy as they were just catching up with my file.
That week was a week of questions without answers yet. Scan after scan, blood test after blood test.
I don't even remember when I spoke to my husband about the news. Everything is still a bit of a whirlwind even a year later. It was yard, being way from him and the children. I am very blessed to have the other side of my immediate family here for support but my poo little Bambinos at home without there mummy.
At the hospital that Monday, they booked me in for the CT, pet scan, MRI.
Actually don't remember panicking once, but it was more like panicked crowd control. Spending that time on the phone sharing, the news with people that i loved. It's weird what panic and facing death can do to a person. Contacting old friends just to let them know because I didn't want them to hear of my passing perhaps on the grapevines somewhere down the track. I'm proud of the way I've handled my life and friendships and relationships in the past and while they have been people I've walked away from I've never burnt bridges.
Talking to my grandmother, even though all my life she has been the person I seem to have confided the most in, has been the hardest throughout this whole process. Watching her lose my mother and then the possibility of a granddaughter is beyond heartbreaking.
I think I had the CT and PET scan and Tuesday and on the Wednesday it revealed that I had not only one large lesion on the base of my brain, but two others and lesions in my lungs and on my thigh.
I think I took the news relatively well. I just kept asking the doctors okay so what next, what next. I was pretty sure it wasn't the same thing my mother had as a glioblastoma only stays to the brain so I was straight away, ok we've got this, what's the next step.
I had an ultrasonic biopsy to the thigh on the Thursday. Believe it or not I found this quite interesting as I was awake, it was done under local and I could see it all. Lay me on the left-hand side and in front of me was a screen. The ultrasound screen. They give you a anaesthetic first you can't feel anything. The being in the position I was in well I had first row to see the screen probably even better than what they did from behind. As the needle went in and I could see it on the screen heading towards a tiny little lump in my thigh, it's a bizarre feeling to know that that's in you but not feel it.
They push a little needle it has almost like some claws at the end of it into the tumor clamp it down to remove some of it and pull it out. They repeated that process three times.
And weirdly I didn't want to get wheeled back to my room I wanted to skip back. My psyche definitely has a weird way of working and dealing with trauma but it's better than moping all day.
I don't think it had really set in that this was in MY body. I was living it but it was surreal.
They said it would take a few weeks for the test to come back to link what type of cancer it probably was and in the meantime they booked me in for a craniotomy, two weeks later.
I saw the lung team, general surgeons, I most of all I saw the guys from craniotomy, brain surgery, pathology and the list goes on.
It can be very daunting, I won't lie to you.
I had left my husband and babies in the next state, 289kms away.
But I faced it head on, BUT...my other family also, My poor family! God, how could this be happening 5 years to the day... To THE DAY...that my mum, my adorable, funny, pain in the ass of the most beautiful, caring, compassionate woman you could ever meet, was diagnosed. I was shattered. For them not myself so much.
I am so privileged to have the basic battlers Aussie life I have. Rent a property, raise some kids, with all their special needs, the tearful, complex, crazy, mess and discombobulation, then throw a few billion different species of animals and cattle in, a disabled husband and you have my crazy, mad, hectic, loud, frustrating, joyful life.
How could this be happening to their carer!!!!
Lord, I know I said I wanted a break, I know I said one two many times "arg Im sick and tired of ...." Whatever may have been in disarray at the time... But this! Really???
But we keep walking, in my case, in hindsight I kinda have been running.
Not be brag... As I'm not 100% it's been a good thing. Running can mean you don't catch up with your emotions.
On October 4th 2023 I returned back home to Tenterfield.
I had returned home for 2 weeks awaiting a craniotomy to remove the tumor on the base of my brain. So far, it looked as it was not touching the spinal cord so that was a positive but still, the thought of them cutting into my skull, my brain, for 7 hours. There is probably every emotion one will go through to prepare.
Obviously, in this day and age, there is doctor Google right Ha ha ha wrong. When I returned, I returned to a Telstra outage. Told you we were rural. I was in the dark except for the occasional call if I walked to the back corner of the property or went into town, which i avoided as covid was going around.
This is why God sent me an angel. I have what I call a bosom friend, my hippy girl, my person. Sue is such a gift from God!
I decided that it was a good idea for my husband to go out bush, with some friends, which was already pre-planned, the week I returned home so she put her hand up to babysit.
Not only did she babysit me but she spent the two weeks sitting beside me, listening to me, holding my hand, passing me tissues for my tears, organizing my entire life, writing everything down... Just in case.
I had no will, power of attorney, nothing.
I was very blessed to have her at that time.
Those two weeks with some of the funniest in my life.
We did some of the most craziest crap I think I've ever done. We had a cow processed the day before she arrived and my husband did not have time to deal with the offal or the head. Being the first larger animal we had processed and beautiful as he was we wished to retain his hide for a rug on the floor and his head for some project down the track. They were just funny moments as we were wrapping things up to put in the freezer where I literally grabbed the bull by the horns to put his head in the freezer and that's what I said to her and we just cracked up laughing.
October 16th 2023 the three kids and my husband all jumped in the car and prepared for the trip to Gold Coast. We found a friend to look over the property for a week so that my husband could be by my side. We have dogs, chickens, guinea fowl, goats, sheep, cows, a blue tongue lizard, cray fish and probably more. But by far the pigs are the worst for being able to leave the property for too long. They need daily attention. So Steve, a long time friend of both my husband and I, looked over it all.
October 17th
I was admitted into the hospital in preparation for a major craniotomy that would take approximately seven hours. They were to remove the large tumor of the base of my cerebral cortex and the scar that I've been left with goes from the base of my shull all the way up to the crown of my head, but praise God, hair grows.
I know I definitely made the most of it. I was very blessed that at that time I had my entire family around me, lifetime friends, and some great support and all along I was not concerned really, I just continue spread the news, just in case. Share the love yeah. I just knew I had to fight and was constantly asking what was the next step. The surgeon I had, looked like Prince Harry. I giggled. This is before the knock out drugs. He asked me if I wanted to know anything before I went into surgery, we were aware that they were going to put a metal plate and screws in my head and my father had mentioned in one dement whether they were going to be flat head or phillips so of course I had to ask. He blushed, you mentioned they were going to be Philips but to advise my dad not to take them out himself.
After giggling I promptly said to him "Ok my prince, I'm ready for my close up."
I have taken everything with a grain of comedy. It seems and it has been good for my soul.
I don't know where God took me for those six and a half hours it ended up being, but I remember awaking urgently, asking for prune juice and knowing that I could never drink red wine again and it would always be prune juice for communion from here and in. Classic giggle. I remember laughing under pain killers and fog hilariously with my Dad and sister who where there to great me when I awoke at around 7.30pm.
Oh they pop these great warm leg massagers onto your legs to keep the blood flowing, they go off at intervals on each leg and they felt wonderful! I remember that.
Two days later, they gave me a biopsy in my thigh to try and link up the cancer and find out what we were dealing with. I don't know whether it was a high amount of steroids I was on all the fact that I'm ADHD based, but all I was sure of was that it wasn't a glioblastoma, I would be ok somehow. They sent me home four days later on day five post op, with much anxiety. It's bizarre having to know that somebody's been inside your brain and they're sending you home so soon but I was up moving, walking, talking, not needing any assistance for anything. I'd come out the other side, definitely better than what I did going in.
I was home at Dads with the kids and my husband. I knew there was a wait ahead but I was good, very good.
But then...add some pretty hectic side effects to something I was on. I never quite worked out what it was but it gave me some server cramping in my arms and legs so I was taken back to the hospital only three days after being discharged. Again another 4 days in hospital being probed and jabbed to find out what the problem was but to no a veil. Sent back home to Dads with the all clear and my husband turned to me with some news. "Honey" he said "I'm glad that you're home again but brace yourself, you need to sit down. It looks like we're about to lose the house in the bushfires". Well well can you imagine! We had the house sitter, dogs, photos and one painting that my mother had painted, evacuated from the house by the local ses in preparation. I remember feeling a slight sense of panic. I visually placed the issue the Lord's hand and He showed me a dome, over our house and the surrounding neighbouring properties I had this sense of peace that everything was going to be alright, despite it all because here I was breathing, walking with my family all around me and these were just possessions. There was so much more in life to focus on now. Praise the Lord just before it jumped the highway the wind changed. The local fireies, along with air bombers, were able to contain it and save all the houses in our town but we lost a lot of Bushland.
My husband returned the next day and left myself and the children on the Gold Coast for another week.
We had made the decision that I would stay there, separated from the family for a minimum of four weeks in order to hopefully, get the proper rest I needed.
I've never been away from my babies for that long ever.
I knew I needed it but the separation was bizarre yet somewhat welcomed. I've been a mum for 24 yrs at that point, wife for 12 and always been a career. That's my job. A career for my son, my husband, the towns kids as I run the local kid club and so many more, and I do love it but man, yes the break was welcomed and I felt guilty for that. After saying goodbye to my little ones one week later, I'm watching them drive away with their grandparents, back home five hours away. I don't think I had any idea of what to do with myself, with the combination of guilt and the inability to sit still, I enrolled in a online trauma course.
It was actually amazing what came out. The beginning of some healing emotionally.
I had an opportunity to write my "story" on the last day to share, to look back on, to power through and have a five year goal.
That's a whole other story in itself
God revealed some amazing things to me. The confirmation of my healing in a vision I had had, and confirmation of that from a complete stranger.
I will never lose the faith because of that moment.
Honesty can't remember the exact date right now but the tests all finally came back about 10-12 days later. Metastatic melanoma.
The weird thing is have no primary on my skin. No lump, no bump, No Mole, no freckle that looks suspicious enough to cut out or to see where this beast first started.
Bizarre how these things will work.
I threw myself into learning all I could about cancer, but more about the holistic stuff. Vitamins to support my internal organs before having immunotherapy as I was told it was going to be pretty harsh on the body. I believe I'm on the young side of this happening so I was told that my chances of side effects maybe a little less but nonetheless I still wanted to make sure I was armed everywhere possible.
Immunotherapy started a few weeks later in the November. Loads of apprehension due to the complications it can cause, but being braf+, this beast is aggressive and fast growing, so I decided on the ipi/nivo combination.
I ask my doctor at that stage for a letter, to explain my situation for financial reasons. The prognosis. Metastatic Melanoma stage 4D! I think the shock hit me like a log to the face then. This wasn't just a cold, or flu, or bug bite, broken bone. This was deadly. To this day, My brain does not allow me to see it that way, my faith rises above that. You see, while my mother had a vision she would not get past her 60th, I had a vision of the hand of God, reaching down with a instrument such like a croquet hock, a shepherd staff that's just popped the brain Met out. My vision was life. We were both happy to accept those visions, in some twisted way. Mum was ready to go... For some reason only she and Jesus know.
The routine was pretty much 10 days at home, 10 days on the coast, and had been all throughout the year. My father and Aaron's parents, all in their 70s, doing the 5 hour drive to treatment and medical appointments.
After scans again in January 24, they showed the immunotherapy was kicking butt in the body, lungs and thigh were clear!!! But... The brain was not responding to treatment. 3 Mets went to 5 Mets, then 15 Mets!!!
It was decided to get the gamma knife team involved.
Very daunting knowing the are about to zap your brain, for the best. But they explained why it was necessary.
The week after the scans, I was up at the Prince Albert in Brisbane. 06.02.2002. The day started with another MRI, which compared to my scans a week before, showed 21 Mets!!!
Just crazy how fast this thing started to spread and grow in such a short time.
While the radiologists plan the zap, the nurses dressed me like Frankensteins bride (as I fondly refer to it)
I'll explain, my gamma knife radiation process, required me to wear a big square metal frame on ones head, called the halo that is screwed into the skull, them attached to the gamma knife machine, so that they can keep your head as still as possible, so as not to scar health brain tissue.
My gamma knife time took little over 3 hours.
Hard to explain how I felt, ok but not ok.
Thank you Lord for my gorgeous Dad who has been with me through all of these procedures, while hubby was back home with the kids and the farm.
Thanks so to Cancer council, we were able to secure a room in the cancer units for the night.
I remember wandering through the shops, feeling ok but kinda, blah. Ate dinner then slept.
But the next morning, was a very difficult ball game. I woke up feeling very average and nauseous, didn't cross my mind until the next morning to take some dexamethasone, which they had given me the afternoon previously for the swelling in the brain, that will generally happen after radiation. I remember taking a dex and traveling home with Dad in the car and feeling awful the whole way. Very nauseous . I hate hate hate vomiting. Once returning to his place on the Gold Coast, I swiftly vomited and just laid on the couch and went straight to sleep, I'm sure it was for the whole day. But I did find that after the dex had kicked in, everything felt so much better so my experience with gamma knife was really just one day of feeling a bit off.
Unfortunately being on the dex, it may have masked the symptoms of the colitis and by the time I realized it, I was coming onto a lower dose of dex at the end of February, when I realized there was a problem with my bowel.
I had completed four rounds of ipi/nivo with minimal side effects, apart from a little bit of a rash (which I treated naturally with rolled oats milk) but sadly by the fourth dose in the February, I developed pretty hectic colitis.
12 days in hospital on 100mg of liquid steroids is NOT advised. The excess eating and energy. I won't complain as I know others don't get the energy part, but for me, it sent my adha into super overdrive. At least 4 times a day, i was leaving my hospital room to do laps around the hospital block. I could NOT sit still.
I really could not understand why I was even there! Others in emergency needing a bed and here I was, not even being able to sit in mine. But once I grasped the facts of how colitis works, and that my bowel could peripherate inside me, very sobering and I stopped making light of the situation in my head and made the most of it.
I was blessed to have other friends and family members, as well as nurses in the hospital to fill my time. I used the time to bless others... Always helps to keep negative "self" absorption at bay.
The journey from March to July was all around my back end, so to speak.
Finding the right dose of steroids, infliximab infusions, colonoscopys, more travel up and back every 10 days or so to the hospital.
Talk about exhausted. But I was really starting to feel it for my loved ones. The time away from me, the babies needing to navigate life without their mummy... And a mummy without her babies. As I've been advised, not to drive, it was my father and my husbands parents, all in their mid 70s, that were and are still, doing the travel on road for me... 5 hours away from the hospital.
It was in the June, that I approached the topic of Angel Flight. Thanks to Rob at Tenterfield aerodome, our town now has a decent grass landing strip, that coincidentally, my husband had been assisting in mowing.
Now, he was mowing my runway. Now, I do have to say, I hate hate hate heights and flying I'm a small aircraft was NEVER part of my bucket list BUT.... Just wow. What an amazing experience! And talk about time saver! The trip takes approx 45 mins via air compared to 5 hours (6 with the kids hahaha) I can't express my gratitude and appreciation for the 'gift of time' Angel Flight and all the volunteer pilots, have donated to little ol me.
The pilots volunteer their time and planes to travel the sick across Australia at no charge. Angel flight provides the fuel, provided by donations from us, the Australia population.
Living rural, I would have missed so many needed infusions, scans, appointments if it had not been for Angel Flight.
To have a few trips where the brain is not full of guilt for needing help, a lift to n fro, over stressed due to time away and navigating time frames. It has been so refreshing,
They can get me up and back on the same day for things like scans ECT . I really can't stop singing their praises.
Back to July.
Colitis has settled down, time to see where I was at.
Pet and CT showed lesions in lung and thigh have returned, and MRI now shows I have 2 considerably large lesions, about to affect my brain and cause neurological issues. In 2 months, those 2 lesions had grown from 1mm to a 3cm diameter!
The speed of this thing is just hectic!
I remember deliberating with the oncologist over the next step.
More immunotherapy could be had BUT the chances of it taking too long to possibly work, given my short history with it, it didn't look promising.
While braf/Mek inhibitors work well, they are last line of defense here in Australia, so if I chose those, more immunotherapy would be out of the question.
With a heavy heart. I choose Enco/Bini. A series of chemo tablets. While they have a great response rate, they will almost always, have an expiry date in ones body. I am just starting round 6 of those as I write this.
I have now just been diagnosed with Addison's disease. This is where I don't produce cortisone so I can go into adrenal crisis if I'm not careful when I take my hydrocortisone. Immunotherapy.... The gift that keeps on giving ha ha ha.
But a year on, all of this is so so surreal.
Back home, still on and off, but home where nothing changes, dependable home, but surreal that I really have missed the last 14 months, viewing it as a director, dictator, making sure the children and household have all they need while I'm gone, directing their path from afar, yet still missing the important things.
Such as this trip, I'll be missing my daughters first awards ceremony. Sadness creeps into my soul over these things. All along, the positivity of the mind, trying to reassure, that there will be other times. But everything is more urgent now.
I am now in limbo
In the arms of Jesus
The last year has been an absolute whirlwind. Continuous travel between states, being poked jabbed, having blood drawn for rounds of immunotherapy, colitis as a side effect, then Addison's, steroids steroids and more steroids.
But in reality, if it wasn't for all that poking and jabbing, i would not be here now, sharing this small part of my story with you. As to this current day, the Enco/Bini has done what it can. My body is clear of Melanoma, but my brain is still just stable and no change, with these demons inside.
It's a big slap in the face of reality to know that nothing in this world is 100% certain. I mean, I've always known it but until you're actually presented with it, it's a completely different story.
I definitely had to change the way I viewed my small world.
I always thought I had a positive outlook of life but after my diagnosis I realized that there are a lot of times I spoke out of my mouth that I was sick and tired and I just wanted to break. When I was diagnosed, well, didn't I try and take those words back from God.
But... From the very moment. I knew my enemy and how to fight. Not physically but spiritually and mentally. I've stood up on the word of God.
No weapon formed against me shall prosper! The deepened relationships, reconnecting with old friends, making news ones, saying good bye to friends I'd only just meet ,until we meet again. Death is a part of life whether we like it or not. But this life is just almost like a practice run. Nun of us are perfect but try to get the important thing right. Time. Spend your time wisely.
I honestly suck at this I feel, my self discipline still needs fine tuning. I'll never stop learning or aiming, fighting and praying. Nun of us are perfect or above any other.
I've learnt so much along this journey.
And have so so many people to be thankful for! My family, friends, doctors, nurses, Angel flight, ALL the Australian tax payers, sonographers, and the list goes on and on and on.
While my journey with this beast is still in progression of healing,
I look at this way, if I'm hanging in there, from hanging I can swing, from swinging I can grab, from grabbing I can climb and the whole time, I know Jesus is holding me tight ❤️
Remember you are not a number, figure, percentage. You ARE are a child of the most high who will fight for you if you let Him.
March 2025
Scans at the end of January showed an increase again in some of the brain testes so I went in for another round of gamma knife radiation to my brain and this time it took all my hair.
BUT
I feel great.
It can have my hair... But NOT my life.
We will be rerunning drain scans just before Easter in April 2025
Organizer
Jenna Brand
Organizer
New South, Wales