A place for people affected by brain tumours or brain cancer to support one another...
Hello All :-)
I wish you all a good day.
I chanced upon this forum while browsing through Glioblastoma, so I thought to share my story...
Personally, I am diagnosed with Grade 4 brain cancer , Glioblastoma on 28th August 2019.
it all happened so fast. I remember experiencing dizziness and nausea during the first week of august, however all my doctors just brushed it aside as BPPV (Vertigo). After 2 weeks, I had to seek help from an ENT as I couldn't walk straight without falling, and I was feeling so exhausted by noon time. It was a rough period for me as I used to be so active. The ENT, luckily booked a MRI for me at the nearest hospital, and from there, I was told that I had a mass in my brain.
I had to undergo surgery to place a shunt in me as the tumours in my brain were blocking the liquid flow, thus there is very high pressure in my head. The doctors described my pressure as poking a straw through a water filled balloon. When they poked a hole in my head, the fluids splurted out.
They did a biopsy on the largest tumour, and thats where I found out I had Grade 4 brain cancer. Honestly, this scares me, as they told me that it wasn't curable, but only with treatment, they will be able to prolong my life. They didn't want to operate on my as all 3 tumours were located at places which is risky to operate, etc : the brain function which allows us to wake up.
Currently, Im on a 6 weeks radiotherapy + Chemotherapy (oral tablets - TMZ), and honestly I do not have much side effects other than the severe hair loss I'm facing right now.
I was told that the median life expectancy is 14-16 months, and it scares me as I am only 23, theres so much to see and do :/
I had so many things on my bucket list that I need to check off! So I am going to try and check those off one by one!
I am going to stay strong, and hopefully my review in 3 months will show good news! I hope everyone of you stay strong too! :)
Bless you. Stay strong I will pray for good news when you see your consultant. X
I am so sorry that you find yourself in this situation but you have found a great place for support. Don't give up on your bucket list and try not to let this horrible condition rob you of the here and now. Staying positive is such a powerful defence against this illness, everyone is quoted the same statistics but each person is an individual and how the disease progresses (or not) is different in each case. There may be much that is out of your control but you can control how you spend your time, surround yourself with people who are positive and don't pass up on any opportunities that come your way, live your life. Please have a look at my profile for more about our journey, happy to chat if you would to private message me.
Mother of a 24 year old son with GBM
Hi and so sorry you have had this diagnosis. My son was diagnosed with a grade 2 tumour when he was 29. 2 years later it was GBM 4 and he is now 38 :-) . He was given the same statistics as you. You sound so positive. Hang on to that and a sense of humour! These things will help you through it I hope. Sending love and best wishes xx
Your story is very similar to my mums, who was turned away 3x by her local GP before getting an MRI to confirm GBM4. I am a similar age to you and I am so sorry, I feel so cheated for my mum so I can't fathom how it would be for you. However, the damming statistics you have read are universal for all GBM patients - I have spent tens/ hundreds of hours exhausting all the internet reading on GBM and from that, their are many long-standing survivors, especially those of whom are younger patients. Please stay strong and positive and see as much of you can from your bucket list. I would really like to make a donation to support something you would like to do if you have a page?
I follow on Facebook Kerri Parker, a young lady given battling a Brain tumour. She’s outlived her diagnosis and reported that her recent scan showed it was stable.
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