Go Grey in May

Debbie - Go Grey in May Day 31

Debbie - Go Grey in May Day 31
Name: Debbie
Our mum was diagnosed with Brain Cancer in May 2014 and passed away March 4th 2017 at the age of 56.
Her tumour was a stage 4 GBM and was located in her right frontal lobe. It was first discovered when she had a sudden seizure out of the blue, when she was away on a girls trip with her friends.
At the beginning of her diagnosis, we were given a time frame of 18 months.
She had a total of 3 brain tumour removal surgeries and went into remission once, however the tumour then ended up spreading to all parts of her brain. She was on a tablet form of chemotherapy for 6 weeks when first diagnosed and also travelled from Colac to Geelong for radiation appointments, this combination made her very very sick and bedridden a lot, lots of vomiting and lethargy and she did lose parts of her hair.
Mum was also on a trial drug called ABT 414 which caused vision loss. She suffered many episodes of clonic tonic seizures one which lasted 47 hours where she was eventually intubated in ICU. She also had weakness in her arms and legs, hallucinations, headaches, constant seizures, memory loss, she couldn't hold onto things like her hair brush and used a walking frame.
Mum always wanted to live her life to the absolute fullest, she was always busy doing something, whether volunteering, gardening, cooking, exercising, being around her family and friends or the footy/netball club.
She leaves behind her 4 adult children and 1 grandchild (at the time)
Brain Cancer is a horrible disease to watch someone go through, fight and battle with every single day. There needs to be more awareness to this awful disease and more funds raised so we can find a cure.
Breanna, Kris, Holly and Sarah
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Michael - Go Grey in May Day 24

Michael Potts born Jan 19 th 1963 died 7th Oct 2017. Diagnosed May 2014 but big personality changes and moods for at least 2 years prior. Married and our son was10 when Michael died.we had terrible time particularly in final year. Michael also chose not to know prognosis to focus solely on treatment . I knew everything though . Then during those 3 and 3/4 years ..I managed I organised etc but I didn't feel . We did not discuss it . There were no sunset moments. He also was in agony until they gave him enough morphine in the few hours as he was dying . Then after no one to help...there should be a person you can hire to do all the stuff paperwork sorting things for you. I was lost. And in shock for a very long time . Then in increments terrible grief guilt the list goes on . Michaels initial tumour was 7.5 cm in all directions top left above speech. Caused terrible headaches in the 2 weeks before diagnosis. Removed after a bungle at hosp where he was left in a side room off AandE and forgotten about..he lost his sight and hand movements before someone found him on floor and started steroids which fixed all that and they removed tumour. Then chemo radiation as standard . All of 2015 clear...I wish we had known to travel and to make wonderful memories that year but we just worked etc . Regret to 2 cm may 2016 ..Then chemo
Grew in jan 2017 to 5 cm in 2 weeks so removed it and chemo and radio again . August tried hyperthermia treatment but he could not tolerate it . Also tried Avastin and canabis oil
. His first seizure was 220th sep and ambulance to hospital . A week later transferred hospice.

We were together 26 and a half years . It seems this foull disease does such terrible damage to tge carers and survivors . The haunting images of those final weeks and the trauma of his death. It is supposed to be rare but it does not seem like it. Michael was computer programmer tgru 90s . Sat with computer box by let all time . 2003 cancer in leg chondosarcoma removed and regret 3 times finally radiation in 2005 . Weirdly this cancer regreew in 2015 and was removed ..they said having radiation and chemo could do this
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Marc - Go Grey in May Day 23

Marc
57, 2/9/1962 -29/4/2020
Left parietal lobe
13 Month
Married , 3 children, 4 grandchildren
We miss you but keep on living as you wanted us to do.
Please keep talking about the disease, tell people about your experiences.
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Go Grey in May Day 22

Go Grey in May Day 22
We lost my sister in 2001 at the age of 47. She never married and had no children. She was with us for the last 10 months of her life. My husband was her caregiver while I worked. She was diagnosed about 2 1/2 years before she passed. She was having seizures which led her to the neurologist. Her struggle was much different than my husbands. She became bedridden for several months and could not talk. My husband was still walking around with the help of a walker, however, he fell and broke his hip which resulted in surgery and I think the trauma and anesthesia was too much for his body to handle. He lasted 3 weeks after the surgery. I would love to see them find a cure for GBM so other families don’t go through what we did.
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Go Grey in May Day 21

Go Grey in May Day 21
Hi Chloe, my husband was 80 when he passed. DOB 9/16/1939 DOD 12/7/2019. Tumor was right frontal lobe. Diagnosed May 28, 2019 and had minor symptoms which would not have alerted us to anything neurological. We were married 39 years and together for 46 years. He was stepfather to 4 of my children and we had one together. He never ever referred to them as stepchildren. He was a loving grandfather to 9 which includes a set of triplets and twins. Quite exciting on Christmas Day. Too many families are losing loved ones to GBM. 
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Dylan - Go Grey in May Day 20

Dylan - Go Grey in May Day 20
My names Candice and my partner name is Dylan we are both 26 and it all started when we were 23 In feb 2019 my partner underwent brain surgery while I was 8 months pregnant with our daughter after such a whirlwind. In 2018 he was coming home from work ( worked as a landscaper at the time) complaining of headaches and we both just shrugged it off from working to hard and not eating or drinking enough water. After having a seizure and other symptoms and getting shrugged off by doctors it finally came to the point one day after my 30 week scan he went fully numb on the left side of his body from head to toe. Thinking he just needed a rest a couple days went by me going off to work and coming home and him looking sicker and sicker to me finally putting my foot down and taking him to emergency on a Saturday night.
To then being told he was being transferred to Charlie gardnier which is a main hospital in Perth because something was concerning about the scan they had done. Going in on the Sunday and being in icu and being told he was having surgery Monday morning everything was a blur and happening so fast and still not knowing it was grade 4 gbm.

We were so lucky that he got surgery so quickly and so thankful they were able to remove 98% of the tumor. Then a week or two later after the tumor had been sent for results to the lab we got told no news a 23 year old wants to hear for his new family about to be and pregnant girlfriend that it was stage 4 gbm located in the left frontal lobe. We kept pushing and fighting and still after being positive and heading into the next phase of treatment being told once again “

there’s no point doing treatment because it’s just going to come back anyway” and being told he probably wouldn’t make it to the birth of our daughter which I was then 35 weeks pregnant. After undergoing surgery , radiation and nearly a whole year worth of treatment he finally got to have a break after our daughters first birthday it was the best feeling. After a long 9 months ( well in brain cancer world ) we got the news that it has returned and there is also another 2 so three altogether we were shattered. Our daughter if now two and He is about to start chemo again and praying it works as we got told he probably wouldn’t be able to have surgery again due to we’re they are located. We will never stop fighting for our family for his daughter and for the Brian cancer community it touched our hearts and we will continue to fight for each and everyone it has affected 💜
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Taylor - Go Grey in May Day 18

Taylor - Go Grey in May Day 18

Each day in conjunction with Go Grey for May, I’m sharing incredible stories of our community of Brain Cancer Warriors. Buy a T shirt, Beanie or wear an old grey t shirt to support the movement around Brain Cancer. 

Taylor Louise Bassett
09/03/96 - 21/10/2004
8 1/2 years old

Our eldest daughter
She has younger sister and a brother that she missed meeting by 5 months

Diagnosis Craniopharangioma

Diagnosed at 2 1/2 years old
Over 6 years - 3 surgeries ( two travelling interstate to Dr Teo) and radiotherapy .

At the time of losing her she was tumour free but the result of all the “treatment” left her vulnerable to illness and we lost her to a viral infection too much for her heart to handle.

Be your loved ones biggest advocate in the medical world ... fight for answers and treatment that may be hard to obtain.

Love and miss her still every day .

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Lorraine & David - Go Grey in May Day 17

Lorraine & David - Go Grey in May Day 17

 

Each day in conjunction with Go Grey for May, I’m sharing incredible stories of our community of Brain Cancer Warriors. Buy a T shirt, Beanie or wear an old grey t shirt to support the movement around Brain Cancer. 

Lorraine Hall
04/6/61 - 58years old
DOD: 24/11/2019
Many small tumors throughout the brain. The main tumor was situated in a place that added a movement to the body or took away a movement. Mum lost the use of her legs and had an extra movement added in her arm abs would randomly flick up.
5months with the brain cancer
but had breast cancer 10years before but was in remission.
Was also diagnosed with bone cancer in 2017.
Widowed, 2 kids and 4 grandkids
Mum I wish this hideous disease did not take you life. I wish you could be with us right now enjoying every moment and watching your beautiful grandchildren grow up into the most amazing little humans. We love and miss you.

David Hall
DOB: 09/07/59- 57years old
DOD: 18/06/2016
Was at the base of the cerebellum.
Fought for 4 years and was classed to be in remission.
In April 2016 found out the tumor had come back and affecting dad in many ways.
Wife and 2 kids, 1 grandchild
Dad how dare this awful disease take your life. You were lucky that you experienced both your children got married but missed the birth of 3 of your grandchildren. Wish they could meet you and see the most amazing man you were.

If you have any symptoms that you are unsure of please get checked and go with your gut.

 

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Michele - Go Grey in May Day 16

Michele - Go Grey in May Day 16

Each day in conjunction with Go Grey for May, I’m sharing incredible stories of our community of Brain Cancer Warriors. Buy a T shirt, Beanie or wear an old grey t shirt to support the movement around Brain Cancer. 


Michele Grumley
63 years old
A new grandma too beautiful Alice Aurora (she was only 2 months when mum found out) has 4 children, and a husband who she has behind. :(
When my mum came to help me look after my baby in late September 2020, she wasn't finishing her sentences when talking to me, and when we went for a walk, she kept telling us that she was trying to get her bearings. "This was strange and I asked her why she didn't finish her sentences? Mum just said she was bored to talk. i just put it down to mum being excited about being a new grandma.
Mum found out she had a tumour in November after teacher her class at TAFE, and the numbers were all jumping around, and she was having trouble writing.
On December 2, she had the operation to remove a large lesion at the back, and they couldn't remove one at the front as it was inoperable. Mum kept telling us children to say "benign, benign, benign! Hoping the cancer was Benign. But later I found out that mum told my dad she knew it wouldn't be benign, and she was new in her heart, it was serious. :( Mum was so strong in the way she was handling the situation, and that goes to show you what an amazing lady she was.

On the 4th of December, it came back that mum did have brain cancer, and it was GMB, a very aggressive form of brain cancer, so she had to recuperate for a couple of weeks and then straight into chemo and radiation

Mum went through chemo and radiation for 2 months, and then she got to go home for a few months and was going to start the stronger chemo in a few weeks.
My mum said that someone had to get this disease, and it just happened to be her. :(

My mum started to lose ability in her left side sometimes, and she had a few falls due to her not being able to lift her legs. Mum would get exhausted and have to sleep a lot during the day, and lost that spark to life. She became super obsessive over things and would get fixated on what she wanted. She never got head aches though, which I'm super relieved about, because I heard they can be brutal. Mum ended up having a massive seizure on the 21st of March, and she never did come out of this. She continued to have a seizure in hospital (Bairnsdale), with them not realising this, and she was sent off the Melbourne hospital.

The radiation and chemo had little effect on mums' cancer, and she was never given other options to fight this. We wanted to go down different avenues with fighting this cancer, but we were told now, as they were still an experimental procedure. That the default treatment was the one she was given. There needs to be more funding into alternative treatments, as my mum only survived 4 months with this horrible disease

Mum ended up passing away on the 23rd or March with family all around her.

My mum was such a beautiful women who loved everyone and no one had a bad word to say about her. She trusted the doctors and the process and i feel like she never had a chance with this disease, as Australia is so behind with dealing with brain cancer. I wish in the future families can get this diagnosis and it not be a Death sentence.
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Corrina - Go Grey in May Day 15

Corrina - Go Grey in May Day 15

Each day in conjunction with Go Grey for May, I’m sharing incredible stories of our community of Brain Cancer Warriors. Buy a T shirt, Beanie or wear an old grey t shirt to support the movement around Brain Cancer. 


Corrina May Beel nee McBain.
DOB 18/7/1965 - DOD 3/6/2016 Aged 50 years.
Left side brain tumour. Battled with it for 12yrs in total. She was in remission for 10 yrs, then it came back. Apparently she was the longest person to be in remission with a brain tumour before it returned according to her specialist in Adelaide. No partner at time of death. 5 x children and 5 x Grandchildren at time of passing, with a further 2 being born since then.
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