Time goes on, but sadly my life is short.
Hey, it’s me (Ryan).
This post is pretty much an update for those who know me - there will be another post about my story in a few days or so…
All the way back in late 2019, life was starting to get more challenging! I quit my job, launched my own business, working 18-hour days to get things off the ground - no weird reason why I started getting headaches/seizure activity, right?
Well, after an MRI brain scan on the 4th of September 2019, I was told that I had a big brain tumour (I named him “Ted”). The next day, 95% of my tumour was removed via my brain surgeon. After a few weeks of recovery and discussion with my surgeon, I was diagnosed with Glioblastoma Multiforme (GBM). I was treated with Radiotherapy and Chemotherapy as planned.
Just to say, my old-blog discusses this in loads of details - feel free to read it!
In April 2020 (during my 5th chemo-cycle out of 6), I started feeling the same side-effects (headaches/seizure activity, etc) as before. I had another MRI scan, and Ted was back - and he was even bigger! So, I had my second Craniotomy (the technical word for brain surgeries). After the surgery, my body had a lot of issues - lack of speech, language, coordination, right-sided numbness, etc. It took a while to recover!
A few weeks after my second surgery, I was called to chat with my surgeon. During this appointment, I was told that my diagnosis of GBM was wrong, and instead my cancer is an Anaplastic Ependymoma (very rare!). I needed a 3rd brain surgery (to remove the last bits of Ted), a Lumbar Puncture (to test whether my cancer was anywhere else), and a full-body MRI scan.
So, because of the above paragraph, I stopped my “Glioblast-oh-shit“ blog, and I’ve not really told many about the above.
After the 3rd surgery, Lumbar Puncture, MRI scans, etc, I was given the “cancer clear“ news! From July 2020, I started to live normally again. I knew that every 3 months I’d need a scan to check, but that was fine…
In October 2020, I started to feel the tumour side-effects (headaches/seizure activity, etc). I had my 3-month MRI scan as planned, and the result (given to me on the 2nd of Nov) was that cancer was back (named a relapse). Ted wasn’t back, but at-least 6 small brain tumours were there. I started on some really-strong Chemotherapy plan (Cisplatin and Etoposide). This stuff takes a lot of work - fatigue, brain-fog, headache, nausea, lack of taste, eye-sight, ears, skin issues, etc… Fun! (I’m going to post some useful info soon about dealing with the side-effects!).
The plan was to review my tumours after my 3rd cycle was completed (Start of Jan). So, on the 5th of Jan 2021, I had my MRI scan - the results were given to me on the week later. Ted is back, plus another new tumour (at time of scan, there’s 8 tumours in my brain). The Chemotherapy isn’t killing my cancer cells (I’ve been told that I’m a tough-cookie, sadly my cancer has learnt how to do the same…) at all - pretty much chemo-resistant.
So, to make things simple - I’ve got around about mid-March before I pass away. My tumours (Ted and my 7-dwarfs) will be growing during that time.
Sorry if I made you sad with my news.
Before I pass, I’ll be posting a load of new stuff - I love sending/posting useful info so that others can learn. On that note, if there is anything that you’d want to know (about me, cancer, my life in technology, the charity stuff I wanted to do, etc) - send me a message!
