There are only 3 ways to treat GBM
Chemotherapy - to stunt the growth. This will not ‘shrink’ the tumour.
Life after loss - GBM
It’s a shit place, a really shit place. Somewhere I don’t wish anyone to be. Somewhere I never thought I’d be at 25. Trying to navigate a new life solo parenting while grieving and missing my soulmate more then ever.
It goes as the saying ‘when you died a part of me died too’
I’ll never be the same person. The life lessons, the pain, the hurt, the loneliness, everything has changed me. Cookie made me a better person. He taught me so much and together I felt like we were a powerhouse. He always used to say to me we are like a train powering along and we can’t fall off these tracks.
Well I’ve fallen off the tracks - NO actually I’ve exploded into a billion pieces. I thought I’d do grief differently or maybe I thought this would all feel different.
The days following Cookies passing I felt so much relief for him - even the night he passed. I knelt down beside his bed squeezing his cold hand in hopes he’d squeeze it back like he normally would. It not only broke me but it also made me feel like he was at peace. That he was ok.
After saying my final goodbyes that night - I flicked the hospital room light off saying ‘goodnight babe I love you and I’ll see you soon’. That walk down the hallway knowing that I’d never ever get to see that beautiful smile again, his sweet I love yous and in fact not only 2 weeks prior he walked himself in here and there I was walking out of the hospital alone without him to never return home again.
I got home around 9-9.30pm that night. The kids all sound asleep in bed and all I wanted to do was just wake them. But I didn’t. I went to bed and layed awake, with the light on, and a stream of what felt like never ending tears. I think I had a wink of sleep but at 6am I heard our little mates feet hit the floor and he came straight into me. This part just broke my heart. Telling the kids he was gone and he wasn’t coming back. Something they really struggled to understand and I mean so do I.
Since then we’ve got through Cookies send off, ticking a few things off his list, his best mates 30th, Christmas, New Year and now Chazzys birthday.
The lead up is HARD the day and in the moment I feel like I do semi OK but then afterwards I crash. I cry for hours/days/sometimes it feels like a whole week.
The daily triggers break me, the less washing, one less plate to dish up, no more nightly showers together, the cold empty bed, the work he did on our house, the clothes hanging in the wardrobe, his shoes in the shoebox, his favourite foods left in the cupboard.. the list goes on.
The weeks and now months following Chazzy forgets and if we drive past the local hospital he still goes to say can we say daddy before remembering his gone. And I can see the kids are starting to really feel it now. Ava will come up to me and say I miss daddy and mummy I’m allowed to cry just like you. I mean bless her but it tears my heart out how a 4.5 year old even has to deal with this stuff.
I remember the first time I took the kids to the cemetery driving in Ava innocently pipes up in the back seat and says mummy I’ve never been here before this place is so beautiful.
I don’t understand at this time in our lives we have to be so familiar in visiting the cemetery to see our missing piece. It bottom line fuking sucks.
And I mean other then this shit downs of wanting to join Cookie and relieve myself from this pain, I try to find my purpose in every day. And as I said above I really wouldn’t wish this upon anyone. I’m hoping one day there’s a cure so that more families don’t have to go through this. I will continue to do what I’m doing because
Someone I love needed a cure.
Lots of love - Chloe xo
This is something that will be and was extremely hard to write but I know that it will be the key to potentially preventing someone from being in the position Cookie was faced with so quick and soon.
A lot of the recent questions that were coming through was Cookies Signs and Symptoms. I guess most of them we always brushed off as him being an extremely motivated young family man, dad and business man... who never sat still was ALWAYS doing something.
So I guess that leads us to the week he started to have his headaches.. when I look back he had been taking Panadol for headaches on and off for months but only occasional and not anything that set off alarm bells.
He came home from work a few nights the 3rd week of July mentioning how he'd get this really extreme amount of pain/aching in his head that he described as stopping him in his tracks, then after a few minutes they would disappear.
One of the first things I said to him was I think maybe you're working to hard and need to have a little rest - he was only 6 months into running his own Small Construction business which was booming and keeping him really busy. The second thing I said was maybe you're not drinking enough water like when do we ever make sure we are. And his comment back was yeah babe you're probably right.
In the months leading up to finding the mass on his brain, he'd been having troubles with his eyes, extremely fatigued, finding he was a lot slower with work and he had quiet a loss in appetite.
- Eye problems including swelling
- Fatigued he'd have 12 hours sleep and still be so tired
- Slower with his work
- Food intake was much much less
Other things included
- Mucking up some measurements with work on more then one occasion and if you knew Cookie you'd know he never would do this
- Small Behavioral/mood changes (example wanting something one minute then changing to the complete opposite minutes later) once again not something he ever did
I also strongly believe that Cookie had a high pain tolerance and also I think he would of seen in himself other things but he was always the one to brush things off as nothing. Through all his Neurological examinations they did even up until the one that he did in hospital a few weeks before he passed they were all textbook and perfect bar a few hand ones on the left side.
The day that he just couldn't take the pain anymore is etched in my mind so well... it was a Saturday - the 18th of July. He'd gone and done a small job then had a bit of time to head to another job about 15 minutes drive from our house. When he got there he called me and said I have to turn around and come home. I've jumped out of the car and my head just feels like its going to explode I'm in so much pain. So he drove home and I made him call the doctors to which they did a Telehealth appointment (thanks C19) and told him to get a test done because we had - had a break out in our small town.
From there the pain continued to get worse and I think the hardest part was that NOTHING he was taking was even taking the edge off... I think on day 5(of 8) of waiting for his test results for (c19) to come back he must of googled something to relieve pressure because he walked out with an ice pack on his head and we had a little joke like we always did.
Through the week I pushed him to call the doctors making them aware that no over the counter meds were helping take the pain away and they said nothing to much other then we had to wait for his results to come back before they could perform anymore tests in which they had written up for him to have a
- CT Scan
- Full Bloods
Once he had a negative C19 test
(We were actually starting to think that maybe it actually was C19 and he was just getting a full force of the headache symptoms)
You know how I mentioned that he was NEVER sitting still... this was the first week id ever seen him actually not have the energy to do many things. Other then sleep, watch movies he just rested and I honestly thought that would make him better :(
The morning of Tuesday 28th of July I can remember us having a conversation saying todays the day surely after 8 days waiting you'll, have your results.
And sure enough he got a text around midday with a NEGATIVE result.
Rang up and booked straight into have the CT & Bloods.
Around 2pm he went up and got them both done and by 3-3.30pm his phone was ringing.
I was actually sitting in the study/sewing room and I remember texting my mum saying this can't be good. I just had this gut feeling by the tone in Cookies voice.
He got off the phone and walked into the study and said the doctors have said I have a Large Mass on my brain. I was in shock I actually didn't believe him for a second before hugging him and crying my eyes out.
Reasons to why his headaches come and then went quickly at the start, was mainly because of the fluid build up in the brain. The ventricles would open allowing some fluid to pass through but because his tumour was large it was blocking the flood meaning that the build up of fluid was putting more and more pressure over time as less and less fluid passed through.
Same reasoning with his eyes particularly his eyelids would be very swollen especially in the morning when he first woke up once again fluid build up and this never really went away even with his shunts. It was always bad when he first woke up and would improve over the day.
Im always always ALWAYS happy to chat, email, message on Instagram about our story and any questions you may have.
If I've taken anything from this myself is never ignore something that you know within yourself might feel off. Not everything would or could be as extreme as this but at least if you go to your GP and have a chat they can point you in the right direction and if in doubt ask and push for more opinions.
We were extremely happy with how our Local GP and Medical Clinic dealt with Cookies case they on the second phone call had organised the scans and bloods.
Someone I love needed a cure
Lots of love Chloe x
** Its also extremely important to know that every single case is different and I'm in noway a medical professional or have any qualifications in this field. This is just Cookies journey and what he was faced with in the months/days leading up to find his mass. Please consult your GP if you have any concerns of your own.