“Cancer”
When I first had my MRI scan, the only thought I ever had was migraines (thanks to some Doctor saying I had “Migraines with Aura”, rather than anything else...).
After a good few hours of staying in a hospital room (8:30am - 3:30pm-ish), a new Doctor asked me whether anyone was with me. At the time I said “No, let’s see what the MRI says!”
Wow, a very big brain tumour! The size of a good apple I thought 😂
After a few bits of information I’ve got my mum to come over to share the news in the hospital. The Doctor was great (she thought that I had Benign brain-tumours - no cancer thoughts 🙌), and then I drove home.
During the drive home I had a call from the hospital saying “Do you want to have the surgery tomorrow, rather than next week?”. Of course! I dropped my car at home, and then me and my mum went to the hospital! From the hospital I had no food that day (waiting for results), so the Nurse and Subway definitely gave me loads of food before “Nothing by mouth” at mid-night! 👌
I woke up in the morning and had a quick scan before that surgery. As planned, all went good!
My surgeon said “hello” and was waiting for me to recover, before I could say hello to my mum etc 😂 Wow, a big surgery - that was easy! After a few days, I got home! A few weeks later, removed my stitches, and that was standard life - just before post-surgery info appointment.
18th of September 2019, I had my appointment with my surgeon and a Nurse to discuss my post-op biopsy results. The results weren’t clear yet, and needed a few days before a clear diagnosis was given. The only result I was given was that is a type of cancer, and that my new Oncologist would meet me on Friday the 27th of September 2019. My surgeon did notify me during the meeting that my biopsy was sent to Leeds to give a more-precise result. Why was that?! 😅
Before this meeting, I researched a few brain-cancers, once of which was Glioblastoma. The appointment at 10:00am started with an introduction to my Oncologist, and 3 or 4 others (Specialist Nurses, Charity Support Staff, etc), plus my mum. Then we started on the diagnosis, being Glioblastoma Multiforme (GBM). I told the room that I’ve had a lot of research, and my Oncologist let me talk.
Most of the info that I was going to receive was given by me, and I was asked if there were any questions. We then discussed the treatment option for Temozolomide (standard Chemotherapy plan for GBM) and 6-weeks of Radiotherapy. The treatment would be focussed on the 5% left in my brain (tumour walls).
During the 8th, I had a Radiotherapy mask moulded to my face, along with a CT scan before starting the Radiotherapy. On the 9th, I had an MRI brain scan to update the picture in my head for the Radiotherapy’s focus areas.
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I definitely recommend that you look at my old-blog, because all of the info about being a cancer patient (having Radiotherapy masks, some type of chemos, side-effects, etc.), its may help other people 🤞 And the rest of this post would be the same as the old-blog, so heres a link instead (the old-blog has most info!)
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The last stuff for this blog for today, “why did I stopped my old-blog?” 😅
The Temozolomide Chemotherapy was scheduled for 4-week cycles, each would start with 5-days of Temozolomide capsules, and the remaining days would be for recovery. In April 2020 (during the 5th cycle), I reported seizure activity to my Oncologist (similar symptoms to what I had before my first-surgery), and I had an MRI scan on the 17th of April at 8:30.
The results of this MRI revealed that the tumour had re-grown in the same walls that were left in the first surgery, though the new size was slightly larger than the original size (TED WAS BIGGER 😅). My Oncologist told me to stop the Temozolomide.
Due to blood-checks confirming that the Temozolomide I was taking had altered my immune system, I was delayed regarding a second craniotomy until blood-counts had recovered. The 7th of May 2019 covered bloods and convent forms with my surgery, scheduled for my second craniotomy on the 14th of May 2019.
The surgery went as planned and I was brought-around in the ward post-op. This is when I first felt major changes to my body. The whole-right side of my body had no coordination, feeling, control, and had less power, speech-language. This caused some of these issues:
Walking without balance
Limited control on chewing
Talking was slurred
Right-lip drooping
Right arm has no control
No feeling on my right-face
No feeling on my right-limbs (both arm and leg, inc hand and foot).
Large reduction in speech and language.
During my stay, I was assessed by a range of specialists regarding the above items. At the start of my recovery stay, I couldn’t walk, eat food, etc, without nurse help. I was discharged from the hospital on the 16th of May 2020, and by this time I started walking on my own, and began to re-adjust my language and eating.
After the hospital stay, it took me a number of weeks to re-adjust before I started walking functionally.
These results took a lot of time before anything was discussed with me. I was MRI head-scanned on the 31st of May 2020 to update my post-op picture. I was alerted about a different discussion than normal when my surgeon greeted me and my mother into my appointment.
During this appointment, I was told that my diagnosis of Glioblastoma was incorrect. This was very different to what I was expecting, however as always I kept my head calm and was told that I had Ependymoma. Due to this, I was told that a spinal MRI scan, spinal-tap, and possibly a third brain surgery may be on play once my oncologist discussed the latest news with me.
My surgeon was fantastic delivering this complex news, it couldn’t have been easy but luckily I am a pretty chilled out guy.
So, onto the next phase of my journey…..
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There’s a few more blog-posts about my misdiagnosis stuff (this post is mainly about life before the weird cancer diagnosis info).
My next blog-post will be about Ependymoma (my real rare type of cancer instead of Glioblastoma).
Don’t forget if you ever wanted to learn anything about my life, my stuff about code, or cancer info, etc - my website has loads of info!
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So have fun!
Have a great day, R
My life, what was that?
Right when I was a kid, I wanted to be a Veterinarian - my family gave loads of animals over the years (fish, hamsters, rabbets, chickens, lizards, cats, etc.). Before the age of 11, thats what I loved doing!
Then just before High School, I changed from animals to playing online games 😂 Though, most kids just play - I looked “what if i make my own game?”...
Eventually, I could not make a game. So instead I tried to make a website - and my God from there that is me starting code! From age 11 all the way up to 17. That’s pretty much what I did every day at home. As soon as I could add a job rather than school, in the age 17, I was working as a programmer!
During my time as a programmer I worked at 7 businesses - I changed every 5-7 months so that I could learn new stuff. I loved being a teacher too (one job was in Liverpool - a new business teaching people how to code!). I would’ve stayed at that job but sadly the business went bust 😢
After the job in Liverpool, I spent nearly 1.5 years in other businesses, and on the 5th of July 2019, I created my own business - instead of jobs with another boss 🙌 Good few months of work was amazing!
And then in September 2019, Ted said Hello!
“Ted”
The size of Ted was huge! I thought I had a couple of days before having some Surgeries, but the next day I had my first craniotomy! Where that was different to normal life, Although give me a couple of days and I was back home. I don’t feel like I needed and recoveries too...
It took me a couple of weeks before any results, so life was just normal.
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This is just a standard story about my life - In the next few days I’ll be posting a lot more about all of the chemo, cancer etc.
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!