So a word of warning, this isn’t a blog post about web performance. I’m afraid those posts may need to be paused for the moment.
Note: I feel the need to point this out. This post is about a brain tumor and cancer. It’s important to realise that the treatment, doctors considerations, and ultimately treatment, are unique to my situation. Anything mentioned in this post shouldn’t be taken as gospel. If a reader finds themselves in a similar situation, please do take the advice of your own specialists. What works (or doesn’t work) for me will 100% be different for other people.
To be fully upfront about all this, on Wednesday 21st April 2021 I was diagnosed with a brain tumor. Completely out of the blue. In the morning I was busy working away still trying to get Brotli compression tested and enabled on GOV.UK, 7 hours later I was given the news that I had a large brain tumor on my right frontal lobe. Hell of a day, huh!
So you may be asking: “Why are you writing about this?”. Well, there are 3 main reasons:
- I want to get this info out of my head (hah!) while I can still remember it.
- From the conversations I’ve had with people since this happened, people are fascinated with how it was discovered.
- To offer help to others in a similar situation that I (and my family) are currently in.
I’ve seemingly learned a fair amount about myself and the topic in the past 3 weeks. If you’d like to know more feel free to read on, or if you’d prefer to stick to web performance I have plenty of blog posts here which are much more light hearted!
This is a question I’ve been asked a lot. From nurses, doctors, pharmacists, out of hours doctors, and family and friends. So I’ll give you a rundown of what happened below:
Initial signs something “wasn’t right”
Back in October 2020 I started to develop issues with my lower left back and left leg. Multiple consultations with the doctors were of the opinion it was sciatica. I was given strong painkillers, told to look at getting physio, and make adjustments to my working environment. This actually all made sense at the time. Working from home for 8 months, with less physical exercise, and generally working more hours than usual, all could have easily caused this issue. Unfortunately, no matter what I tried it didn’t solve the issue. I tried: a standing desk, new office chair, new shoes, lots more walks, physio. Nothing seemed to be helping. It got so bad at one point I was crawling on my hands and knees at 3am to go to the bathroom because I was in so much pain. Not exactly what you expect to be doing at the age of 39!
After several months the back and leg pain seemed to fade, but it then turned into extreme heel pain in my left foot, which the doctor said was likely to be plantar fasciitis. Apparently runners tend to get this a lot, but I certainly wasn’t running! So yes, a fun 6 months!
But things have developed further and over the past 4 - 6 weeks I have experienced 3 seemingly very minor seizures. Throughout each I was fully conscious. I will try to describe each of them as I remember them the best I can.
Seizure 1: Standing at my desk
I now have a desk that allows me to both sit and stand very easily. I’ve got into the habit of standing for meetings with people while on a video call, but when it comes to “real work”, I always sit. This tends to give me a good balance of both sitting and standing throughout the day.
For the meeting in question I just so happened to be on mute and wasn’t speaking at the time. I suddenly felt quite dizzy and had to lean on my desk a little. At first I thought I was having some sort of panic attack. I don’t remember the topic of discussion for the meeting, but at the time it happened I was thinking “maybe this is making me anxious?”. I do remember having a really strange out-of-body experience (OBE) while it was happening. It’s hard to describe, but it’s almost like coming to the realisation that that “you are fully in control of everything you are doing” and “you have an effect on your surroundings and the people you interact with”. It feels more like a powerful emotion than anything physical. Or another way I’ve described it is imagine someone turned off the auto-pilot in your head. You are now having to consciously breathe and blink for yourself, as well as think about all the other things going on too.
Within 10 - 12 seconds this intense feeling had passed and I suddenly felt fine again. It was the first seizure I’d had, so I thought nothing of it, and simply moved on with the rest of the day.
Seizure 2: Driving in the car
This was around 2 weeks later. Now this one scares me now that I know more! Technically I wasn’t moving at the time, I was parked at traffic lights waiting for the light to turn green so I could then pull across a carriageway into the local supermarket.
Suddenly, I had the same OBE I’d felt before, where I felt like someone had pulled “me” out of the back of my own head. In front of me the lights turned green and I managed to pull forwards and start moving a little, so I had some control of my feet. Unfortunately I didn’t have the strength in my left arm to fully disengage the handbrake, so the warning alarm sounded in the car to tell me it was still engaged. I was fully conscious. My brain was telling my hand to push down and release the handbrake, but my hand simply couldn’t. It was a very strange experience where your arm and hand seemingly has a mind of its own.
Because the alarm was beeping, my wife looked over and mentioned that the handbrake wasn’t down, but she didn’t notice anything else in me that looked different. I didn’t try to speak to her, and I’m not even sure if I’d have been able too if I’d tried. Again, within 10 - 12 seconds this had all passed and I was fully able to move and control the car. We went to the shops and returned home with no further issues. Once again I put it down to a panic attack, but as it all happened so quickly I dismissed it and carried on with life. At this point I hadn’t linked the 2 separate events together.
Seizure 3: Sitting at my desk
This is the one that happened on the 21st April, the day I was diagnosed. It was around 10:50am and I was sitting at my desk working on a document. Suddenly the OBE I’d felt before came back. Only this time I lost control of both lower arms. I was unable to raise them to the keyboard to continue typing. It then developed further and I felt like I’d lost control of the lower half of my face. Almost like someone was gently pulling down on both sides of my cheeks and I was unable to stop them.
I realised this was happening, as I was fully conscious. During this time I must have tried to move, as I’d started to lean to the right side of my chair. I was rotating slowly, unable to really control my movements. Again as with the other seizures, within 10 - 12 seconds this all passed and I could again control what I was doing. But this time it was different.
With this seizure I’d been sitting at my desk, nothing strenuous was happening at all. It was quiet and I was calm. Because of this I was able to notice that I simply couldn’t control my hands and that my face had “drooped”. This immediately alerted me into thinking that I was having a mini-stroke. Now, I’ve seen the FAST campaign adverts on TV, and realised a stroke can become very serious if not acted on quickly, so that really freaked me out!
I immediately opened the NHS 111 website (the UK non-emergency advice service), to fill in the details of what had just happened.
Right on the front page of this service it says:
Check it’s not an emergency - Call 999 now if you have: signs of a stroke - face dropping on one side, can’t hold both arms up, difficulty speaking seizure (fit) - someone is shaking or jerking because of a fit
At this point I was thinking, “okay.. I’m going to have to phone 999” (for the first time ever in my life). But before I did I thought I’d best discuss it with my wife downstairs. I walked downstairs and calmly told her about what had just happened and also the other brief episodes I’d had weeks before (as I hadn’t mentioned them to her). We both agreed that 999 would be the best option.
It was a strange conversation with the 999 dispatcher. They were talking to me, “the patient”, asking if I was fully conscious and able to lift my arms, move my face etc. These are all standard checks for a stroke. I was able to do everything they were asking me to do with ease. At this point I felt like a total fraud, and I was simply wasting their time. I further described what had happened and that it had now passed, but I still felt a little weak in my lower arms.
I was categorised as a priority 2 (I believe) and told an ambulance would be with us within the next 5 minutes. So I quickly started to pack a few things just incase I needed to leave with them for the hospital sharpish.
Within 5 minutes there was an ambulance outside the door. Two very nice paramedics came in the house and questioned me about how I was feeling and what had happened. They checked my blood pressure, checked my blood oxygenation level, asked me to focus on their fingers, push & pull with my arms against theirs etc. These are all standard checks for suspected stroke patients. It turns out they couldn’t find any issues, which was embarrassing. It got me thinking: “had I just imagined this all happening?” and “am I just overacting and wasting their time?”.
One of the paramedics decided to speak to the specialist unit at the hospital to ask for advice, as they were unsure what would be best (and so was I!). After a 5-10 minute discussion I had 2 options:
- the paramedics would leave and I’d take this up with my doctor to see what was happening. This could take weeks.
- come with them in the ambulance and go to hospital for additional checks.
As I was still thinking this could be early signs of a stroke, I (thankfully!) decided that going to the hospital was the best course of action. Even if just to rule out the possibility of a stroke! So that’s what I did. I got in the back of the ambulance and 20 minutes later I arrived at the hospital and was admitted to a very busy ward.
I’m afraid not much really happened at this point for an hour or so. I had chats with nurses and the doctors on duty, describing what had happened as I mentioned above. The doctor looking after me was a little perplexed by it all, as it was very unusual. I can’t remember the exact term he used, but I believe he was thinking these symptoms sounded like some sort of dissociative disorder. This was because of the OBE I’d described to him.
Computerized Tomography (CT) scan
As part of the standard checks I was given a CT scan. Not only that, they injected me with a special dye called ‘contrast material’. One of the side effects of this contrast is you feel like you’ve wet yourself about 20 seconds after they inject you with it. I honestly thought I’d had an accident when it happened. Apparently it’s related to the kidneys flushing the dye through your system. Either way, it feels weird!
Due to the ward being extremely busy I needed to wait for the results to be examined. This probably took around 5 hours. The first four hours seemed to go quite quickly. I had my noise cancelling headphones and a good book I was enjoying, so I was entertained (although slightly uncomfortable in the high back chairs and a face mask for COVID).
We’ve spotted something
About 5 minutes before being shown into a private room, the doctor looking after me came up to me and said the sentence:
We’ve not forgotten about you, we’ve just spotted something on your scan
Strangely enough, I couldn’t concentrate on my book or music anymore. That was a long 5 minute wait! Well, the 5 minutes passed and the doctor came back over and asked me to follow him into one of the rooms. “Fine”, I thought, “how bad could it be?”. But a few seconds later I could immediately tell something wasn’t right about his body language and manner. He seemed to be struggling to find the right words. And then he came out with it:
I’m really sorry to tell you this, but we’ve found a brain tumor on your right frontal lobe
I have to admit the rest of the conversation is mostly lost due to the enormity of what I’d just been told. It felt like the ground dropped from beneath me. But I do remember him saying it “was large”, and that “if you were to wish to have a brain tumor, this would be the type you would want to have”. A strange statement now I think about it, but one that has been confirmed since.
After about 3 or 4 minutes of chatting about who knows what, I just wanted to get out of the room. I actually felt quite sorry for the doctor. He must have done this so many times with patients over the years. I can’t imagine it ever gets any easier. I have a huge respect for anyone who has to do this on a daily basis, it must be totally crushing at times.
I quickly managed to find the words to thank him for letting me know and promptly left the room to try and work out how the hell I was going to tell my wife this over the phone. We’d been in constant communication all day via messenger, since due to the COVID restrictions she wasn’t allowed to stay with me. I knew she would be worried sick at home. It was around 7pm and she’d be getting the kids ready for bed.
I finally mustered up the courage to phone her and tell her what had been said. Again, I don’t really remember the conversation at all. But an hour or so later she’d managed to arrange childcare and she was on her way over to pick me up. She arrived and I think we were both still in shock. We didn’t really say much, other than repeating exactly what I remembered from the doctors conversation. That evening I was sent away with a concoction of drugs to start taking immediately, and then told to return to the hospital tomorrow morning 9am for an Magnetic resonance imaging (MRI) scan.
So what is it?
See, now that’s the million dollar (pound) question isn’t it. Not all tumors are the same. Some are benign, some are fast growing, slow growing, large, small etc. The CT scan could only show something was there, but not in the detail needed for a more conclusive result of exactly what.
At this point I’m going to skip ahead. I had the MRI scan the next day. Then a few days later another ‘wet yourself’ inducing CT scan. The full body CT scan was clean, showing that there were no other tumors or areas of concern in my body. Great news!
Meet my tumor
Time to cut to the chase. This is my brain tumor. There are many like it, but this one is mine. I’ve nicknamed him Gary Glia. Gary because it is a seemingly unpopular name nowadays in the UK (can’t imagine why…), so it seemed quite appropriate. And Glia because it is the type of cell in my brain that has gone tumorous.
Gary is an unpaying tenant that has taken up residence in my head. What a prick!
A few days later I had a meeting with the neurosurgeon where I was shown the above images. Now full respect to the neurosurgeon I spoke too, I like him. He was straight down the line and straight to the point. No sugar coating, no forewarning about the size of the tumor. After 30 minutes of chatting about all of the above, he simply pulled his phone out and showed me image number 1 you see above. You could say I wasn’t exactly prepared for the image, a understatement if ever there was one. But in all honesty I don’t think I ever would be. So it was a good tactic. Make it quick and painless, just like ripping off a band-aid!
So, what do we know about Gary?
- He’s big… look at the size of this unit. I’m amazed I can even function at all to be honest!
- He’s of the type called oligodendroglioma and currently believed to be a Grade 2 (slow growing) tumor. Wondering how you pronounce that? Isn’t YouTube great!
- He’s very rare, with only 1,217 people diagnosed with this type in the US every year out of a population of 328 million!
- He’s a number of years old. The neurosurgeon said a couple of years, but I personally suspect he could be 7 or 8 years old due to other symptoms in my past I now think could be related.
- He’s a prick.
So I’ve basically won a really shit version of the lottery… but then again maybe not. It could be so, so much worse! I actually have options that I go into in the next section. There are people out there who are given this devastating news that include words like: ‘Stage 4’, ‘aggressive’, ‘inoperable location’ and are literally given months to live, and there’s nothing that can be done. Thankfully, I’m not in that place!
I don’t want to depress everyone, so let’s focus on some of the positives I’ve since found out:
- It’s believed to be a slow growing tumor, that is currently classed as the less aggressive type (oligodendroglioma rather than anaplastic oligodendriogliomas).
- It originated and is primarily located in my brain. I have no other areas in my body showing tumors.
- It responds really well to chemotherapy. If I turn out to be 1p/19q Codeleted then chemotherapy is even better.
- My symptoms (seizures) can be managed via drugs, which now loot to have minimal side effects.
What happens next?
I’ve had a really great set of meetings with some very knowledgeable folks from Oxford University and the John Radcliffe hospital in Oxford. There are three options available to me:
1 - Do nothing and active monitoring
Basically manage the symptoms and look at how the tumor progresses over time. Go for regular checkups and see how long I hold out.
2 - Biopsy to determine the exact type
At the moment Grade 2 is suspected because the CT scan hasn’t shown the usual telltale signs of Grade 3 (which is bright white ‘spots’ in the scans). Doing this would require brain surgery to remove a small portion of the tumor to be tested. I’d then need to recover from this, before a more specific treatment plan is created.
3 - Remove as much as possible via major surgery
This is the last option, and the one I’ve decided to go for. This is where the surgeon open’s my head and will try to remove as much of the tumor as safely as possible. Once completed, additional surgery may be required to remove any tumor that is left over, or radiotherapy and (or) chemotherapy can be used to finish it off.
This surgery can sometimes take up to 9 hours, and it will most likely involve me being awake for it too (so not under general anaesthetic). I find that part both fascinating and terrifying all at the same time! The reason for this is because they want to be able to ask me questions while they are operating e.g. “move your left hand”, “blink your eyes”, “speak to us”. That way, they can be sure they are minimising the damage to the good parts of my brain. It blows my mind (hah!) that it’s possible to even do this, but I’m very glad they can!
But, as with all types of surgery (especially on the brain) there are some inherent risks:
- 10-15% chance that it could cause a stroke or paralysis
- less than 5% chance of a seizure occurring during surgery. This can be very bad indeed, and will result in the operation being stopped immediately
- small chance of temporary paralysis on my left hand side
- small chance of infection due to the head being open for a number of hours
As mentioned above, looking at the size of Gary, and weighing up the risks, 3 seems like the only viable option to me that could lead to the best overall outcome. Considering I’m 39 and not in my 70’s, compared to the alternative of doing nothing, it feels like a simple decision to make. So that’s what I’m doing. I refuse to go gentle into that good night, so it’s time to make plans to evict Gary Glia from my head.
It’s also worth remembering: neurosurgeons are amazing people and they do this day in, day out, as their job! This is just a walk in the park for them…
So what happens now? Well I’m now on the waiting list for the surgery, and I have additional monitoring and scans coming up. It’s basically a case of waiting for a date and managing the symptoms. If it is that the seizures come back, or anything else gets worse, then things get reassessed by the specialists and the plan changes. I’m continuing to work as much as possible, and spending time with family. For me it’s all about keeping my thoughts away from the dark places they could so very easily slip into, which I fully admit they did for the first week after diagnosis.
So here’s a section I’ve compiled for readers who may find themselves in the same position as I’m now in. Thankfully, brain tumors are rare, even more so if of the type oligodendroglioma and anaplastic oligodendroglioma, so there may not be many of you out there. But if there are, here are a few support links to help you out:
- Macmillan cancer support - Oligodendroglioma
- The Brain Tumour Charity - Oligodendroglioma
- Brian Tumor Support Charity
- Brain Tumour Action Charity
- Brain Trust Charity
As you can see, there’s lots of support out there. Macmillan and the Brain Tumour Charity have been fantastic over the past few weeks. The work they do for people needs to be talked about more. They really are unsung heros working behind the scenes to make people’s lives better, in some of the most challenging times they will ever face.
Pro tip: Be very very wary of ‘Googling’ your type of tumour and reading random forums. There’s a lot of scary stats and topics out there that may be totally fictional, or only apply for that specific individuals case! A ‘random Google’ is a dangerous path to take. Trust me I did it and quickly stopped! If you can, stick with approved sources and those recommended by some of the charities listed above. Or speak to the team looking after you for advice.
Now, I realise there are some really terrible topics to have to talk about in the section below, but unfortunately they need to be considered. I’ve actually found the practical side of dealing with all this really useful. I’m completely powerless in terms of a future date for the surgery and the results of said surgery. But what I can do is make preparations for eventualities that may happen. It may not seem like much, but with the practical side it feels like I’m actually doing something useful. I’m moving the ball ever so slightly forwards.
So here are a few topics you could (should) start to think about:
- Make sure you share passwords with your other half! I recommend setting up a family 1Password account. With a shared vault you can securely share documents, passwords, notes, all in the cloud. No need for unsecure notebooks with written passwords that could be lost or stolen!
- Cancel your driving licence and remove yourself from the car insurance. In the UK you won’t be allowed to drive if you have a brain tumor / seizures.
- Make sure your partner is listed on household bills, and can talk to the companies.
- Is your paperwork filed away in a single place and ordered logically?
- Does your partner have easy access to it all?
- Do you have a safe? If so, do they know how to get into it? Share the combination / backup key with them.
- Start to make a list of what you will need to (eventually) take to the hospital. Maybe even start to pack a bag straight away. It’s not much, but at least it’s there ready to go when needed. Involve your partner in this planning too.
- Check if your employer offers any pension scheme / death in service benefits. Is your partner listed correctly on these?
- Ensure your partner can speak / access bank accounts if required.
- Share details with your partner about your life insurance, income protection, mortgage payment protection etc. Maybe even speak to an Independent Financial Adviser (IFAs) about all this to check it is all in order.
- Are there any extra benefits you are now eligible for e.g. Personal Independence Payment (PIP)? The charities listed above can help you with advice on this.
- Consider setting up a joint account with your partner, and have shared money “just in case”.
- Create a spreadsheet with information about your household utility providers e.g. who’s your electricity provider. Include account numbers, contact numbers, cost per month, payment method etc
- On the same sheet you could include details about finances (Credit Cards, loans, higher purchases etc)
- Include details about pensions, banks, building societies you are with including account numbers and contact details.
- Remember to securely store this information (see the 1Password recommendation above)
- If in the UK you will now most likely be eligible for free prescriptions on the NHS. You can apply for this through your local doctors surgery. So make sure you do this, as you’ll likely going to need a fair few drugs over the coming months / years!
- Make sure you have a last will and testament prepared. Make sure executor’s are informed and listed correctly.
- Ensure you have your Lasting Power of Attorney in place with your partner listed, as well as backups. You can ‘do it yourself’, or speak to an specialist advisor for this. I opted for an advisor, I don’t have the mental capacity or time at the moment to do it manually.
- Make a list of questions to ask nurses / doctors etc. I’ve shared the list I made here that you can copy if you are struggling.
Above all else remember, you can make plans and be prepared, but even the most well-made plans can go pear-shaped quickly. It simply isn’t possible to pre-think and pre-plan everything for every eventuality. So there’s only so much you can do. But much that is listed above could be considered “good practice” for any adult anyway, even if you aren’t in the same situation I’m in.
Plans for this blog post
So what are the plans for this blog post? Well, I plan to keep this post updated with my progress for those who are interested. This will be the only blog post where I mention Gary the prick. Basically it will be a self-contained blog post about a topic I never expected to be living, let alone writing about! And as with my web performance blog posts, I’ll try to keep them as ‘living documents’ that are constantly updated as things change. I will continue to use the ‘Post changelog’ below in exactly the same way.
So I have a huge number of folks to thank who have been amazing over the past few weeks:
- My wife, who has been so incredibly brave throughout this. Immediately looking for information and support that is out there (both emotional and practical). She amazes me every day.
- My parents, sister, brother-in-law and immediate both sides of the family who have rallied around to help us in whatever way they can. At the moment COVID restrictions make this hard, but this should become easier in the UK very soon. I can’t thank them enough.
- Line managers from GDS, both past and present, who have helped ease my mind when it comes to the logistics of work in the future.
- The Frontend community at GDS. I feel so lucky to be able to head up and work with such an amazing group of talented and dedicated individuals. They inspire me every day.
- A certain ex-GDS colleague who shall remain nameless. They have been a fountain of knowledge in so many different areas that, in all honesty, I didn’t even realise existed 3 weeks ago!
- And last, but certainly not least, the wonderful paramedics, doctors, nurses, and all workers of the National Health Service. The quality of care I’ve received so far has been truly outstanding. It’s all the more impressive considering the huge strain COVID is placing on the whole system at the moment. They really are heros!
And finally, thank you reader for taking the time to read the post. It wasn’t at all easy to write, but I feel so much better for actually taking the time to do it. Hopefully some of you find it useful. If helps even just a single person get through such a monumental, life changing event such as this, then it was totally worth my time writing it.
Another seizure - Monday 10th May
On Monday night I had a really ‘fuzzy’ head. That’s the best way I can describe it. It was almost like I’d taken some sort of sleeping tablet. I also had a ‘prickly’ head and scalp, quite sensitive to touch. I went to bed early but woke up at 2:30am with the same OBE I’d experienced before. I think I had another seizure in my sleep. I can’t be 100% sure as I fell to sleep again right after it. I just remember waking up to the same feeling.
On speaking to the team of specialists they said it’s most likely from lack of sleep, my body adjusting to the drugs and general stress with everything going on at the moment. They aren’t too concerned and my medication will be staying at the same level for the moment. If it gets worse in the coming weeks they will look to up the amount of anti-seizure medication.
I just need to work out what the triggers are, and the warning signs of one occurring. It’s a whole new world for me, so I don’t recognise the signs yet. You can live 39 years in a body, and still have no idea what is going on with it…
Messages of support - Thursday 13th May
I’ve been absolutely blown away by the huge number of messages of support I’ve had since writing this post. I posted it on Twitter and on LinkedIn and have received literally hundreds of messages. I’ve tried to respond to as many as I can, but I may not have seen them all. So sorry if I haven’t replied! Just to say thank you to everyone who has reached out. I really do appreciate the support. It’s all been quite overwhelming, and will admit to welling up a few times from the sheer number of them. What a crazy couple of days.
Neurosurgery pre-assessment clinic - Saturday 15th May
On the 20th May I have another appointment at the hospital. This is the pre-assessment for the surgery. I’m not 100% sure what is involved, but I’m going there with a list of questions I’m hoping to get answered. On speaking to a senior member of the team during the week the timeline for surgery has been revised down from 3 months to 4-6 weeks (assuming other higher priority cases don’t bump me down the list). This is good news, but also makes me a little anxious! I was mentally preparing myself for having 3 months to get used to the idea of awake open-head surgery. 4-6 weeks seems way too soon! But it is what it is. I’ll get used to it, it’s not like I really have much of an option…
Yet another seizure - Wednesday 19th May
A short update. I had a very short ‘mini’ seizure in the morning just after waking up, around 6:10am. I was feeling perfectly fine, then suddenly my face felt quite warm. I could feel something was about to happen. I had the feeling of losing control of my face again (drooping), then started rocking gently backwards and forwards in my seat as has happened before. I was fully aware and conscious during this time. Around 10 seconds later I was back in control. It was nowhere near as intense as some of the other seizures I’ve had, but it’s still a seizure. So it’s important to keep the specialists informed. I believe we may look into upping the dosage of the Keppra drug I am on in the coming days.
Pre-operative assessment appointment - Thursday 20th May
So today was an interesting day. I learnt a lot about the upcoming treatment and the weeks ahead. The more information I have at the better, as planning anything is virtually impossible at the moment! I had a 2.5 hour meeting with a friendly senior nurse on the team looking after me. She answered all my questions and gave me a rundown of the coming weeks, months, and years. I’ve tried to break what was said down into sections following a chronological order of future events. Ultimately the reason for the consultation was to prepare me for surgery in the future, which is a good thing. Although I’m still very nervous about the thought of a whole team poking around in my head, the information given to me today has really helped me understand it all.
I need to start logging any previous and future seizures, this is very important. Ultimately the plan is to achieve a sustained period where I don’t have any seizures, while keeping me on the minimal amount of drugs possible (due to drug side effects). There’s a fine balance to achieve this, and we aren’t there yet. I seem to be getting one seizure a week at the moment. I’d say my drugs will be increased in the coming days. I’ve also been asked to try to speak the next time a seizure occurs. The team has questions like: “Am I able to talk at all?”, “Does it cause slurred speech?”, “Are the words I want to say totally different to what comes out of my mouth?”. The team are interested to know how a seizure affects my speech, since this can give an insight into the parts of the brain being affected by the tumor. So that’s on my to-do list for next time!
I’m scheduled to have a neuropsychology assessment in the coming weeks. I didn’t realise how important this actually was until today. It’s going to be a long process, possibly a 3 hour+ meeting where members of the team will conduct many memory and cognitive tests on me. Ultimately, this testing will be used as to set a ‘baseline’ for various aspects of my current brain function. This baseline will then be used both during and after the surgery.
It was explained to me that during surgery they will be constantly asking me questions and asking me to move parts of my body. While this is happening they will be manipulating and testing neurons in my brain to see what effect it has on my cognitive ability. Only once the surgeon is 100% happy that said part of the brain is safe to remove, will it actually be removed. As you can imagine this is going to be a long process with a tumor the size of mine! The baseline will also be used to compare brain and memory function during the recovery period. Without this baseline it would be extremely difficult, if not impossible, to measure the effect the surgery has had on me.
Only after this baseline has been established will my surgery be scheduled. That’s how important this assessment is!
I’ve been given a set of items to use the night before surgery.
- Antibacterial body wash
- Antibacterial cream (for my nose to combat MRSA)
- Antibacterial mouthwash
Basically I need to be as germ free as possible before having surgery. I will be using all three of these the day before and on the morning of the surgery. Body wash all over, leave for 1 minute then rinse. Rub the cream up my nose 3 times throughout the day and in the morning. Mouthwash 3 times the day before, and again in the morning of surgery. Doesn’t sound pleasant, but if it means there’s more chance of success I’m more than happy to do it!
Now this is where it all starts to get very interesting, as the process was explained to me in detail so that I know what to expect on the day. I will likely be told on a random Tuesday in the future that I’ve been scheduled for surgery on the following Friday. So I’ll only get 3 days notice! That’s going to be an interesting week! I’ll have a COVID test 2 days before, then on the Thursday I will go into the ward and prepare for surgery the following day.
I will have another MRI scan and a brain mapping scan. The brain mapping scan is used to map the coordinates and direction of travel which the surgeon and team will enter my skull. All this is planned to the smallest detail. Nothing like Dr. Nick off The Simpsons (thankfully!).
The surgery is likely to last 5 hours, 3 of those with me being awake. They will put me to sleep for the first hour to prepare me since it sounds a little unpleasant. I will be attached to a metal frame via a set of small screws that are drilled into my skull. I will then be woken up and won’t be able to move my head. My head will already be open. Upon waking I will be surrounded by a team of people and won’t be able to see or feel anything that is happening behind me. The team will continue to ask me questions and to do things while they operate and slowly remove the tumor (using the methodology mentioned earlier). Once they are happy, they will again put me to sleep for an hour, patch me back up and I will be sent to recovery. It all sounds so simple doesn’t it!
Assuming the surgery goes well I will be admitted to the recovery ward for around 24 hours. I’ll have a tube coming from my head to allow fluid from the wound to drain safely away, as well as various other pipes attached to my body. The aim is to get me up and mobile (at least a little) within the first 24 hours. This is to reduce the chance of blood clots, as there’s a raised chance these can happen for up to 3 weeks after surgery. If all goes well and I don’t show signs of seizures, I will be sent home. How crazy is that, major brain surgery to home within 24 hours! If it is that there are complications, I’m unable to move etc, I will be kept in for longer. It’s all a complete unknown at the moment.
Once Gary the prick has been extracted, he will be tested to see what exactly he is (or was), and this data will be used to inform my ongoing treatment plan. Genetic marker testing (e.g for the 1p/19q Codeleted gene) will also be conducted, and this data will also be used to plan the best treatment moving forwards. The ‘default’ treatment for this type of tumor is surgery, so it’s likely I will have more head screwing fun in the future! Radiotherapy can be used once, and chemotherapy can be used multiple times to clear Gary’s leftovers should it be needed. We shall only know more after the messy uninvited squatter has been forcibly removed.
Back to ‘normal’ and work
I’m likely to need a minimum of 6-8 weeks off work. In this time I will likely exhibit changes in mood, behavior, concentration, and personality. This is all perfectly normal due to the fact that my brain will be adjusting both physically and chemically to the tumor not being there anymore. If I require further surgery and/or treatment like chemotherapy/radiotherapy, I may need a little longer to recover. Again this won’t be known until after surgery.
The key is to take this slowly. I already know this is going to be an incredibly frustrating time for me. I know myself. I’m not one for sitting around doing very little. I’m always on the go and doing something. But I’m going to have to live with it for a few months. Maybe I can start watching all of the box sets & movies I’ve always wanted to watch! Or start tackling the tonne of books I’ve never read over the years. I mean after all, it sounds better than the alternative!
A bumpy weekend - Saturday 22th - Sunday 23rd May
So it was a bit of a bumpy weekend in terms of how I’ve been feeling. I’m now on anti-seizure medication that I will be taking for the foreseeable future, maybe even forever depending on how surgery goes.
Day went well until about 10:30am, suddenly I felt extremely tired, sat on the sofa and promptly fell to sleep. Woke up 10 mins later to find my 4 year old son had covered me in cushions and was laughing his little head off as I woke up. I was completely and utterly confused as to what had happened. The medication I’m on mentions drowsiness / tiredness, so I put it down to that. I didn’t feel 100% all day, generally quite weak. I had the same feeling around 6:30pm where I could barely lift my arms and just wanted to sleep (this is not at all like me, as I generally hardly sleep!). This feeling passed after an hour or so, after a little food.
Went to the park with my wife and children, no issues at all. Around 1pm I had a sudden feeling of weakness. Went to the living room, sat on the sofa, promptly fell to sleep. My 4 year old son is very opportunistic, again covered me in cushions, again in hysterics when I woke up 20 mins later. He’s going to be a fun teenager…
Seizure in the kitchen - Monday 24th May
Due to everything that happened over the weekend, which we assumed were the side effects of the drugs I contacted the team of specialists looking after me early in the morning via email. I knew because of this they would be in contact with me later in the day.
Around 7:30am I was standing in the kitchen having just prepped the kids breakfast. I suddenly had what I can only describe as an emotionally driven feeling that something was about to happen. I could feel something building. I immediately recognised something wasn’t right and sat down next to my wife at the kitchen table. She could see something wasn’t right either, so stood up next to me and so as to shield me from the children. I suddenly couldn’t really control my movements and started gently rocking backwards and forwards. I was conscious and remembered that I’d been asked to speak the next time this happened. I said out loud “Can you hear me?” to my wife. It sounded perfectly clear in my head, but to my wife it sounded slightly slurred. She could still make out what I was trying to say though. Apparently while this was happening my eyes were very wide, but that could really have just been panic on my part. It all passed so quickly as they always seem to do.
Going back to the emotion I felt. I’m not sure if this was something triggered by my subconscious, as in “bubbling up” to tell me “stuff is going on here, get ready for it”, or if it was me thinking about a seizure and then this triggered it because I thought of it. I’m thinking the former to be honest.
On speaking to the specialist nurse she seemed to think that the episodes that occurred over the weekend weren’t side effects of the drugs. These were actually a different type of seizure that were happening over a longer period of time. Well at least now I know! Because of this my anti-seizure medication has been increased, and will be increased again in a week. The aim is to have a long period of time between each, or even stop them completely before surgery. So we shall see over the next week if this increase actually works.
Obtained my full scan data - Tuesday 25th May
When in one of my follow-up meetings (20th May) with a senior nurse I happened to ask the question if I could have a copy of the original photos from the scan. All I had at the time was a screenshot from a video call that was shown to me off the neurosurgeons smartphone (what a crazy sentence, isn’t modern technology amazing!). I was told to visit the hospitals radiology department, fill out a form at reception and it could all be arranged. On the form the interesting part for me was the following section:
The top section allows you to choose how they send you the data. For a patient it was either as an online link or as an encrypted CD. It shows you how old the form is, no mention of USB sticks, or even DVD media! I chose the option where an online link is sent to me via email.
It’s also worth noting the sentence below this box:
The patient is entitled to a copy of all the Radiology imaging we retain at this trust. However if specific episodes are required, please specify below.
So depending on your local NHS trust, you should be able to do this yourself (should you be interested).
Once I clicked on the download button I realised this wasn’t just a set of high resolution images, as it was a zip file for 1.3 GB of data! Intriguing! It took me a number of attempts to actually download the data, and I had close friends try too. Their server connection was slow and unreliable, and it also doesn’t seem to support HTTP range requests, so it wasn’t possible to resume a download after already managing to grab 880 MB of it! Best thing to do I found was to wait until later in the evening. I managed to get a download speed of around 2.7 MB per second, so it only took around 15 minutes in the end.
The reason the zip file is so huge is because it is sent in a standardized format for use in specialist tools that can interpret the data. Here’s me thinking it would be just a few images… nope! It’s literally all the images from all scans completed so far! Hence the box on the form stating which scans you require.
I believe there are around 4,000-5,000 images in total from 1 CT and 1 MRI scan! Thankfully there are tools that you can use to view these images. And not just view them, they allow you to navigate through all the scans. Each image is essentially a “slice” of the brain. The tools allow you to move through all 3 axis in near real time, with each of the corresponding panels changing depending on the input from the others.
In the above image you can see my MRI scan. It’s essentially an orthogonal view of my head, with each of the panels represents a different axis:
- Left panel: Top of my head (Axial view)
- Top right: Front to back of my head (Coronal view)
- Bottom left: Side of my head (Sagittal view)
The solid blue line you see in the views is the current plane I have selected to see. As you move this plane, all three images change accordingly. Notice how the blue line on the axial view (left panel) matches that of the coronal view (top right) in terms of position. The resulting image in the sagittal view (bottom left) is the image that corresponds with this selection I have made.
It’s so incredibly clever and absolutely fascinating (to me at least)! I spent the best part of 2-3 hours looking at my own brain scans. I wish I knew what it all meant, but I plan on quizzing the experts when I get the chance. I’d like to write a blog post all about it in the future. So, watch this space!
For those interested in doing the same the tools I used are:
Horos takes it a step further, as it allows you to view your scan in 3D, and even export an animation to show all your friends at the next soirée you attend! So yes, if you ever fancy looking at your own insides in detail, remember you can request your CT and MRI scan data!
Cloudy head seizures - Friday 28th May
So I think I’ve started to recognise the signs of having a seizure. But this isn’t an obvious type of seizure that started this whole saga off 5 weeks ago. This looks to be a different type that I touched on in a previous update. In my ‘Seizure spreadsheet log’ I’ve written:
Weakness in arms, “cloudy” thinking. Feel it around my face, tingling in forehead, almost throbbing sensation. Sleepy. Hard to keep my eyes open. Muscles changing in my face (odd tightening up from the middle). Feeling coming on for a number of hours. Feels like it is building up to a seizure. Brain feels “heavy”. Went to sleep for 40 mins, felt like something ‘lifted’, may have had another seizure in my sleep. Had the same out of body experience while sleeping.
It’s hard to say, but I think I may have had another more obvious seizure while resting. I remember it happening so I did try to move my arms and they seemed fine. So who knows! Urghhh! But after my ‘sleep’ for 40 minutes or so I felt a whole lot better.
Also, I’ve noticed my left foot (heel) has started to hurt, which is one of my initial symptoms that I was blaming on sciatica. So I’m going to be mentioning that at my next catchup with the team.
Date for the memory test - Tuesday 1st June
So I’ve now been given a date for the baseline memory test. This is happening on the 29th June, a whole month away. Not ideal, and I’m a little torn with the date. In some ways I want it sooner to “get it out the way”, but in other ways I want it later. At least when it’s later it gives me more time to ‘prepare’. I still feel I have so much general life administration left to complete before the ‘big day’.
The symptoms with my left foot still persist but tend to vary day to day. Because of this I may need to be given different drugs and / or have additional scans to see what Gary is up to. I’d like to think he hasn’t gotten even bigger in the last month, but it wouldn’t surprise me!
So now I have the date. I’m guessing the operation date will be 1-2 weeks after this. So around mid-July… or in other words around the time of the F1 at Silverstone… Damn you Gary!
Back on the steroids - Thursday 3rd June
Unfortunately over the past 2-3 days the symptoms in my legs and feet have returned. I was hoping that the anti-seizure drugs were the ones keeping these at bay, but it turns out it must have been the steroids which I came off a number of weeks ago. The team have decided to put me back on a short dose so as to improve my mobility (which I’m very grateful for!). I’ll be halving the dosage in a week, then likely coming off them again the week after. Since it takes a while for them to leave your system I’m hoping that takes me up very close to a surgery date, at which point the root cause of the issue can be ejected from one’s skull!
Reduced seizures and steroid side effects - Monday 7th June
So the good news, the seizures seem to have reduced a lot over the past few days. I’ve had very little to write in my seizure log for the team. I like this direction of travel. Unfortunately as happened before the steroids have decimated my sleeping pattern. I’m currently writing this update at 00:40 and don’t feel tired at all. And yesterday I went to bed / sleep at around 3am, then woke up at 6:50am. Apparently under 4 hours of sleep a night isn’t the ideal amount you should be having! Oh well, at least I’m getting lots more stuff done!
Neurologist appointment - Thursday 10th June
Due to the seizures I’ve been having I was referred to the Neurologist who is part of the multidisciplinary team who are looking after me. It was a somewhat confusing meeting, but also very interesting that lasted around 40 minutes.
From previous conversations I’ve had with doctors, I was under the impression that the tumor was likely causing the issues I’d seen with walking in October (left back, leg, foot pain etc). But upon talking to the Neurologist and describing my symptoms, they seem to think that isn’t the case and it’s all purely coincidental. Confusing! I’d prefer it to be the tumor causing it to be honest. Having 1 major brain operation and solving 2 problems, sounds like a good deal! But alas, we shall see when Gary finally buggers off into the hospital incinerator. Only then shall we know for sure!
What was interesting for me was the conversation around classifying my seizures. I’ve been keeping a seizure log (yet another fun Google spreadsheet!). All fairly standard columns:
- What was I doing
- (Copious) Notes
Now I’d already started to notice this myself: not all my seizures are alike, and since taking the anti-seizure medication I’d started having different symptoms. The Neurologist confirmed this today. So I’ve now added another column:
- Is it a seizure involving the ‘core features’
A convoluted column title I know, but I’ll explain what It means. The ‘core features’ are effectively the most obvious (and serious symptoms). For me I’ve identified them as:
- The feeling of being ‘outside my own head’
- The emotionally driven feeling of everything being bigger than my own self (existentialism)
- Any loss of motion and control over my body
- Loss of consciousness (not happened as of yet thankfully!)
Basically if I have a seizure that displays these core features, then it is logged as one. The other seizures I’m having are still logged in detail, but not listed as a ‘core feature’ seizure.
So why is this important? Well, without this classification every little seizure suddenly contributes to what looks like an escalating number of seizures. If this is the case then getting the balance for medication is difficult. I want to be on enough to stop the ‘core feature’ seizures, but not so much that I have other side effects. This classification allows me to pull out the really important ones and therefore allow the team looking after me to see if they indeed are escalating, or if they are being managed.
So there we go, top tip if you have a brain tumor. Keep a seizure log and look for patterns in what happens when they occur!
A ‘core feature’ seizure - Friday 11th June
After the call yesterday it was all going so well. Nothing I would class as a ‘core feature’ seizure for the best part of 2 weeks. Unfortunately, one happened this evening at about 10 past 9pm. Watching the TV sitting on the floor, my wife just paused the TV to get something from the kitchen then I felt it. Again like an emotional response. Something was about to happen. I could feel it coming on. I tried to turn around and ‘shake myself’ out of it and convince myself I could stop it from happening. But within 5 seconds I’d lost control of my upper body and was shaking gently back and forth, unable to stop it.
As I’ve been told to see if my speech was affected I made sure my wife could hear me this time. She had walked in the room and not noticed what was happening so played the TV. I just started saying “Pause it”, “Pause it” “Pause it” over and over again, then eventually I said “I’m having a seizure”. Now I could have stopped myself from speaking, but I wanted to make sure we knew what the effect of it was on my speech, so I continued talking. It turns out she could hear me fine, no slurred speech. Said I sounded quite normal. I guess that’s a good thing? In total from the feeling to the end I’d guess it lasted about 30-40 seconds. Even 2 hours after it I still feel weak across the back of my shoulder blades and upper arms.
I’m hoping it was due to it being a long and busy week, maybe just tired. Or the fact that I’m now weaning myself off the steroids on the request of the Neurologist. I’m not sure! But to be honest, if I only get them once every 2 weeks, I’ll take that at the moment!
- 21/04/21: Tumor first diagnosed.
- 12/05/21: Initial post published.
- 15/05/21: Posted 3 new updates from the week. Next appointment on the 20th May.
- 19/05/21: Added information about another seizure.
- 21/05/21: Added information about the pre-operative assessment appointment.
- 25/05/21: Added update about the weekend and another seizure I’ve had.
- 29/05/21: Added information about obtaining my scan data and a different type of seizure.
- 03/06/21: Added update on date for memory test and overall symptoms.
- 07/06/21: Added steroid and reduced seizures update.
- 10/06/21: Added update from latest Neurologist meeting.
- 11/06/21: Update on first ‘core feature’ seizure I’ve had in 2 weeks.