The story so far (short version)Richard Race
An abridged series of events that has changed my life forever.
Note: This is about my own experience. If you're reading this because you or someone you know has a brain tumour, don't assume it will be the same. And every major surgery carries risks - don't read into my own complex situation. This is for me to help process what has happened, what's happening and what's to come.
TL;DR: Click here to see my Instagram post
I awoke to my wife on the phone to the emergency services, being told to stay laying down, paramedics appearing in our bedroom; it hasn’t been the same since.
October 16th, the night before.
It was just like any normal Saturday evening, we cycled round to my in-laws and enjoyed a meal before cycling home. Looking forward to our new life and our first home - we had completed just 2 weeks prior. Nothing dramatic. Nothing to prepare me or Laura for what would change our futures forever.
To be honest, it felt quite rude to be woken up to my wife panicking on the phone, being shouted at and then paramedics walking into our bedroom. “Oh, they’re here to see me?!” - what a strange thought. A surreal thought.
They did their checks and I was FAST1 positive. Could just be a migraine I thought, I get the full aurora of symptoms and I’ve had migraines since I was a teenager. They normally happen during stressful times and buying/moving is stressful. But this felt different. Laura knows I have migraines, and she’s witnessed them before. It’s not that.
Turns out I went into status epilepticus - I had 3 tonic clonic seizures without regaining consciousness. Damn.
I was blue lighted to my nearest hospital and went straight for a CAT scan on my head. Even though I was FAST positive when the paramedics arrived I had almost recovered totally by this point. I had mild thoughts of a possible stroke but nothing prepared me for the words “there’s something on your scan. We’re sending you for an MRI”
I went for my first ever MRI scan. Unbeknown to me a sound and experience that in the coming months I would become very familiar with. Whilst waiting for the results to come back, I wasn’t really thinking anything - I was so disorientated and tired I just napped.
A doctor woke me and they confirmed that I had a brain tumour. A brain tumour.
I was sent for a full body CT scan now, to confirm whether it was a primary or secondary tumour. In this context a primary brain tumour was good news. A secondary tumour would be bad - it would mean a cancerous tumour elsewhere in the body spread to my brain. A primary brain tumour cannot spread to the other parts of the body, thanks to the blood brain barrier.
It was confirmed as a primary brain tumour - yay?
I was started on a series of different drugs. I spent the next four days under hospital neuroobservation. Aka being woken up every six hours to perform various exercises and a light shone into my eyes. From there I went straight to see a specialist in a different hospital.
After speaking to the specialist, a consultant neurosurgeon, it was assumed I had a low grade tumour (good) and I’ve had it for up to 10 years. An unwanted lodger we began to call it. I wouldn’t have a diagnosis until they could get a biopsy (there’s over 130 different types of brain tumours2). I would need to have a more detailed MRI to assess the size of the tumour and recommend the next course of action.
After my MRI we had another meeting and decided an awake craniotomy would be the best option aiming to remove 50% of the tumour. The tumour volume was ~193cm3, roughly the size of a baseball.
My lodger is located in the left side of my brain. Predominately in my primary motor cortex that controls the muscles in my right side.
December 9th Surgery
I’ll go into detail about my awake craniotomy in a future post. I was awake for the whole surgery, for some it differs at what stage you’re awake/asleep. I’ll just say, it’s an amazing experience, I couldn’t tell you if it’s bad or good. It is what I had to do - I’d do it again.
I had some immediate side effects / complications from surgery. Due to the tumour’s location, I couldn’t use my right hand, my speech was affected (muscle’s related to speech) and I was experiencing seizures.
The following three days were a blur. Morphine does not agree with me. Due to the side effects from the surgery and brain swelling (which was to be expected). I stayed in hospital until the 22nd to make sure I could use my right hand safely and my speech/language was functioning at an acceptable level. I was discharged, happy days.
Long story short, after several trips back to A&E I was readmitted on December 28th due to my wound leaking. I was started on a course of antibiotics prophylactically in case of an infection. The assumption being if stuff can get out, stuff can get in. And being so close to your brain, you don’t take chances.
Back in hospital
It was New Year’s Eve, I’m about to have another stitch in my wound. They were prepped and double checking the site where they found the leak and oh no. Pus. I had an emergency wound wash out that evening, I went down to theatre at about 21:30. This process involved re-entering the tumour site and giving my brain, bone flap and scalp a good clean. What a way to end 2021 and start 2022.
This was a second brain surgery, but I was under general anaesthetic. For me, at least, this was a breeze. So much easier than having the awake craniotomy. Maybe having my first experience of any form of surgery awake and brain surgery has given me a warped sense of what’s “normal”.
I continued having IV antibiotics, the microbiology lab were able to identify the specific strain of bacteria causing the infection. So I switched to a specific IV antibiotic used to tackle this particular bacteria. My wife was allowed to be trained at administering the IV.
I was planning to be discharged any day, things were all lined up, until COVID. Someone on my bay tested positive for COVID which meant I couldn’t be discharged and I would have to isolate for 10 days. I was on a green ward - you had to have multiple PCR tests before being allowed on the ward. Well, there’s worst places to be after recovering from brain surgery and an infection.
Turns out it was really good I had to isolate. During the 10 isolation days I developed a drug reaction from the IV antibiotics I was on. I was changed to a different oral antibiotics. It took a while for the reaction to calm down but this was looking better.
After I had stabilised on the oral antibiotics I was sent happily on my way with a big box of them to take.
I lasted less than 48 hours out of hospital
I was out of hospital for less than 48 hours - I went back in on 2nd Feb due to having a focal seizure that wouldn’t stop. After 20 minutes we rang for an ambulance (same crew as my original A&E trip), and after various checks I was carted off once again. It didn’t stop for 3 hours even with the help of a special “rescue” drug.
At first during this stay at my local hospital they were treating me for my brain tumour related epilepsy, that was until I developed a fever. I was now being treated for sepsis. Brilliant. My local hospital arranged transport to my Neuro specialist hospital. The bone flap may have to go.
I changed to a different oral antibiotic and 2 different IV antibiotics - one needed your blood levels checked every 4th dose. My IV schedule was:
- 5am-6am Drug A
- 6am-9am Drug B
- 11am-12pm Drug A
- 2pm-5pm Drug B
- 5pm-6pm Drug A
- 9pm-10pm Drug A
- 10pm-2am Drug B
Depending of the dosage of Drug B it would be extended to another hour. So 13-16 hours a day I would be hooked up to an IV. Fun. I almost immediately felt so much better and my fever stopped after changing the antibiotics. Not sepsis! Hopefully not my bone flap!
After having 3 weeks of this treatment and cautious lead up to discharge on 8th March - I was free! Hopefully at least.
Stable - at last!
That brings us to today. I’m doing well in my recovery. Consistent sleep has been my key to progress. I’m still facing daily struggles with:
- Sensation problems with my right hand and right side of my face
- Focal seizures affecting my right hand and face/speech
- Verbal Dyspraxia
- Fatigue due to medication (I’m back down to just my epilepsy medication)
Somewhere between actually worrying about the acute problem - the infection - I started to get curious about what my tumour was. Tissue samples were sent to the lab for gene sequencing and what it looked like under the microscope. The results came back as an Oligodendroglioma Grade II.
Oligodendrogliomas are divided into two types:
- grade two oligodendrogliomas that grow very slowly
- grade three oligodendrogliomas, also known as anaplastic oligodendroglioma. These grow faster and are more likely to spread. They are more common in older people aged 60-80
My next treatment will be radiotherapy followed by chemotherapy. So it’s important that I have the energy and drive to tackle these stages.
The plan isn’t to eliminate the remaining tumour. It will be to stop it growing. It is currently inoperable due to the location and diffuse nature of my tumour. If it shrinks that would be a bonus.
My lodger will likely be part of me forever. It is incurable, at least for now.
I’ve stayed away from googling much about brain tumours on the advice of my consultant. There’s a lot of out-of-date research, studies that don’t include enough people or evidence. For me, it’s impossible to know what future holds:
Oligodendrogliomas are rare. About 3 out of every 100 brain tumours (3%) diagnosed in England between 2006 and 2010 were oligodendrogliomas. 3
I have found the following books/webpages helpful in understanding and coming to terms with what I have. Every brain tumour is unique. Every brain tumour affects the individual and those around them in different ways.
- The Brain Tumour Charity
- Brains Trust
- Brain Tumour Research
- Gideon Burrows
- Incurable and inoperable low grade glioma
- Living Low Grade
- Gordon Shaw
- Incurable and inoperable Grade 3 Anaplastic Astrocytoma
- Bitter Sweet
- Long Live My Happy Head
- Matt Hobbs
- Grade 3 Anaplastic Oligodendrioglioma
- We’ve spotted something on your scan…
- Sara Challice
- Cared for her husband for 13 years after he was diagnosed with a brain tumour.
- Who Cares?: How to care for yourself whilst caring for a loved one
- Reddit /r/LowGradeGliomas
Specifically for my type of tumour:
- Macmillan: oligodendroglioma
- The Brain Tumour Charity: oligodendroglioma
- Brains Trust: oligodendroglioma
- Cancer Research UK: oligodendroglioma
The acronym stands for Facial drooping, Arm weakness, Speech difficulties and Time to call emergency services. ↩