Hi all, F25 here, my 5.5cm tumour was found following a sudden awful headache on 19.04. Have been to see the neuro-oncologist and an awake craniotomy will be scheduled hopefully in the next month to remove it. They think the reason it has been discovered now is that it may be moving into a more aggressive stage, which isn't reassuring.
Terrified is an understatement. Obviously afraid pathology will come back as a high grade tumour, but I'm more afraid of what it'll do to my family. It has totally put my life on hold, not knowing if I'll even get to see 30. Feeling hard done by as I'm sure others will agree with, I can't believe this is happening to me.
Any advice or experiences are most welcome, I know prognoses vary based on the person but seeing stories of folks way surpassing the 'average' survival times is reassuring to me.
HI Amberrito
a warm welcome to the online community. Sorry to hear about all that has been happening.
I supported my late husband through the three years of his stage 4 brain tumour journey so I can empathise with your emotions and feelings at this stage.
I'm not big on giving advice but I would suggest that you take this journey one step at a time. Don't Google- Dr Google is a scary dude! Focus on the facts as you have been told them and take this one step at a time. It is all to easy to jump to conclusions and assume the worst. All the emotions you are feeling are perfectly natural so don't be too hard on yourself. Its a huge amount to process but trust me, your family will be there to support you through this journey no matter where it leads to.
There are countless types and grades of brain tumour and not all turn out to be nasty. There's some great generic info on the main website. Here's the link
Understanding primary brain tumours | Macmillan Cancer Support
G had an awake craniotomy and coped really well with the surgery itself. Ahead of the appointment we met with the speech and language therapist and she talked him through some basic tests to determine his baseline that would help during the surgery to ensure that the neurosurgeon didn't make matters worse. She also asked him about his interests and what things he liked to chat about. Hopefully you get to meet someone as supportive ahead of your op as it really helped him that there was a familiar face there. He wasn't kept in hospital for long either. He was home two days later. we then had to wait two weeks for the pathology to come back to confirm the diagnosis. To be honest, his neurosurgeon was brilliant and he had called it from the scan results pre-surgery, based largely on his experience.
Knowing what you are dealing with is a thousand times easier to cope with than the no knowing.
This group is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For now though I'm sending you a huge virtual hug and lots of positive energy.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi
G was treated at Queen Elizabeth University Hospital in Glasgow.
There are other members of the online community who have sung the praises of several hospitals around the country.
I'm sure you'll be in safe hands.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
