~ astrocytomajames ~

The name’s -Therapy, Chemo-Therapy…

#14

After the events of 2018, what would 2019 hold? I dreaded to think to be honest.

The highs of finishing radiotherapy and the joy of Christmas were reduced to low thoughts of chemotherapy in the rainy days and dark nights of January. Replace chemo with work and everyone knows what I mean…

At the beginning of December, we met oncologist A~ who explained the chemo plan. Initially, there would be no treatment for a month to give my brain and my body a bit of time off.

Arguably, the word chemotherapy is just as scary as the word cancer – but chemotherapy is medicine and it will make you better (you might just feel a bit worse before you do feel better, that’s all). My crass interpretation of chemo is after the intricate operation and the amazingly targeted radiotherapy are complete, it‘s time to throw down the maxi-bottle of bleach and see what survives. Chemotherapy is a big and daunting step up.

Unlike radiotherapy, chemo is usually given as several sessions of treatment with long rest periods in between. Combined, they are known as a cycle. Oncologist A~ wanted me to have at least 9x cycles, 12x if I was physically and mentally able. Each cycle was 28x days long. The first 5x days would involve chemo medication, the next 23x would be rest and recovery.

My image of chemotherapy is someone sitting in a comfy chair, hooked up to an intravenous dispenser. In my case, A~ selected an oral tablet called Temozolomide, meaning I could take the drugs at home (on my new armchair) which makes a huge difference to the experience. No travelling to and from GCC when you’re likely to be feeling your worst.

Most chemotherapy drugs are carried in the bloodstream. To access the brain, drugs need to breach something called the blood brain barrier which exists to preserve the fluid that the brain floats in. The BBB allows certain things through whilst preventing others. Temozolomide is on the entry guest list.

The drug disrupts the way cancer cells grow and divide in a brain tumour and therefore stops them reproducing. However, as with radiotherapy, chemo also affects normal cells and some parts of the body are particularly sensitive to chemo.

For example, your bone marrow produces stem cells which develop into all sorts of other important cells, including blood. Chemotherapy drugs reduce the number of blood cells created and that’s why blood counts during chemotherapy are crucial.

If your white blood cells are low (neutropenia), your immune system is weak and you’re far more likely to get an infection – being ill around a chemotherapy patient could be life threatening for them. I had a few dinner dates cancelled because of illness – they claimed to be ill anyway…

If red blood cells are low (anaemia), you will be tired and not have much energy because RBC contain haemoglobin which carries oxygen around the body.

Third in the blood count are platelets which are tiny blood cells, found in large numbers, that help your body form clots to stop bleeding. If they are lacking, blood clotting is hindered meaning you will bruise easily and bleed more than usual from any cuts or grazes.

If there was an issue with blood counts, chemo could be postponed for a week to let the levels increase naturally. If there was a continuing issue, a blood transfusion could quickly achieve the counts required without wasting valuable time.

The oncologist and nurses have always stressed about continuing to live your life during all stages of treatment. I appreciate this means different things to different people but if there was something I personally wanted to do, they were happy to delay my chemotherapy treatment. You cannot let cancer own you, it’s your body after all.

It’s also your body (mass index) that uses your height and weight to work out if your weight is ‘healthy’. Your BMI score (mine was in the overweight category – again I blame Borough Market) determines the dose of Temozolomide given – 430mg daily in my case.

Once a cycle begins, you need to take the drugs exactly as prescribed and at the same time each day – changes can affect how well the drug works. For me, the regime was lunch at 12midday, anti-sickness pills at 2pm, Temozolomide at 3pm and an afternoon nap.

As blissful as that sounds, the uncertainty of what side effects you might incur is unnerving. The potential list is again a long one. Some people have very few side effects, some have none at all. Hair loss is once again at large but as I said before, chemotherapy will make you better in the end. It just takes the long route home.

Having passed my chemo pre-assessment, blood counts all within spec, my first cycle would start on Monday 21^st January 2018. Pass me that Domestos…I’m ready for action!

Fraction by fraction…

#13

The brain (like any organ) can only tolerate a certain amount of radiation before it starts to damage it. Equally, a brain tumour needs a certain amount of radiation to shrink it so it’s a very calculated dose.

Radiotherapy cannot be repeated on any area of the body previously treated. For every type of cancer, the maximum dose possible will be given and in my case, that was 59.3Gy (in 33x individual fractions over 6-7x weeks).

A reminder that the actual radiotherapy session only lasts 2-3mins and most of the session is spent by radiographers getting you in the right position. They use coloured beams to make crosshairs on the mask to get perfect accuracy, just like this…

Below is a short but interesting time lapse video of a radiotherapy session. It was posted on Instagram by @stuartgrantuk…wish I had thought of doing it!

View this post on Instagram

So here I am on my 29th day! One more to go! Decided to do a time lapse of my Radiotherapy.. if you watch to the end you will see me bolted to the bed in my sexy bright green mask! For those of you who have ever wondered what happens during Radiotherapy (probably none of you! Lol) now you can see the big machines moving round nuking my brain.. to be fair it’s day 29 and I had no idea how much the machines move around me! Day 29 ✅ DONE!

A post shared by Stu Grant – InstaNinja (@stuartgrantuk) on Aug 8, 2019 at 3:24am PDT

@stuartgrantuk

After my 3x seizures at the start of the RT, Clobozam had been prescribed as a medication to take twice daily. Combined with the maximum dose of Keppra, I successfully made it through the next 4x weeks of radiotherapy without any further seizures…HOORAH!

How Clobazam works in the brain is not entirely clear but it’s thought to affect the neurotransmitters and change the way brain cells communicate. Clobozam is part of the benzodiazepine family (as is Valium). These drugs are opioids. Opioids used to be called narcotics and what they give with one hand, they take away with the other.

Benzodiazepines are medicines that are likely to cause psychological dependence AKA addiction. The neurotransmitters become accustomed to the drug and if a dose is missed or reduced (even on the advice of a neurologist) a withdrawal process starts, reducing seizure control in my case.

Unfortunately, the longer you take Clobozam, the less affect it has on the brain. Therefore, my daily double dose of of the drug was always seen as a temporary measure to be reassessed in the coming months.

Back to radiotherapy and once a week, prior to that day’s treatment, I had a weekly review with a member of the team. I think losing my hair and gaining weight belied how well I was feeling. I was keeping to the RT rules, getting plenty of rest and without the pressure of work (thanks to the generosity of the JG page), I wasn’t in any danger of over doing it…

To be honest, my big concern was how much food I was eating at Borough Market (opposite GCC). My personal favourites were the salt beef sandwich, the confit duck wrap and the canelés from the bakery. Maybe that’s why I gained 12lbs…I always blamed the steroids…?!

You need to look after your skin during radiotherapy as one of the side effects is it becoming red and sore and itchy. I remembered a conversation about using moisturisers with SPF protection. Unfortunately, that was a conversation to protect the scar after my operation and not for use during radiotherapy. SPF creams (certainly the one I was using) contain metallic-based zinc oxide which has the ability to increase the surface dose of radiation to the skin which will affect the perfectly calculated radiation dose. Note to self.

My final session of radiotherapy was on 20^th December 2018, perfectly in time for Christmas. A milestone at a time of year when reflection is inevitable. It would take the best part of a year for my head and brain to recover from the operation, let alone the added effects of radiotherapy before the chemotherapy scheduled for 2019.

For now, I had successfully crossed the first rickety rope bridge on this long journey and only then did I look back and realise how deep the canyon had been below. One more salt beef sandwich and it may not have held…!

The changing faces of radiotherapy…
November – December 2018

Merry Christmas one and all!
December 2018

Guess who’s back, back again…

#12

After being discharged from KCL in October, I was on a variety of medication but most important were the steroids (to help reduce the swelling from the operation) and an anti-seizure drug called Levetiracetam (more easily referred to as Keppra). I was on medium strength doses of each.

Radiotherapy was rapidly approaching and I had settled into my new regime of taking pills morning, noon and night whilst staying with Jo and Gemma. I completed my first 2x fractions of RT, everything was going swell…

I assume my brain was also feeling swell…or maybe it was feeling swell-ING. At 4am, on Wednesday morning I woke up with a numb, tingling right hand which was twitching and jerking. Uh-ohh…

I was lucky to have somebody to call and both Jo and Gemma came rushing in. I raised my right arm and my fingers were having a party. There was a knowing glance between us all.

500,000 people in the UK have epilepsy and, in most cases, you wouldn’t know they did. Seizures aren’t harmful (generally) so long as you’re not in a position of danger. That said, this whole saga was so raw for us, they were still a big deal.

I came around eventually, paramedics by my side, remembering and realising what had happened. Given the nature of my recent medical history, I was taken to the emergency department at the University Hospital Lewisham. I was sent for a CT scan whilst Jo and Gemma waited in anguish.

The medical notes said I was very stable, my blood test levels were good and we just needed to be patient and wait for the results of the CT scan. By mid-morning I was in a ward and I felt fine. Nevertheless, my third radiotherapy session was cancelled by the hospital staff and I stayed at Lewisham for observation.

Laid there, almost exactly 12x hours after the initial 999 call, my hand started shaking again before falling unconscious whilst fitting. This was not supposed to be part of the script…

A reminder that a seizure can be defined as a ‘sudden burst of electrical activity causing a temporary disruption to how the brain works’. These disturbances were happening a little too often and to try and get a better idea of why, I had a MRI scan. When you’re tired and feeling quite vulnerable, I can think of other places I’d rather be than a noisy and claustrophobic tube for 30/40x minutes.

Much like when I walked too far on my birthday (blog #9), this was another grave reminder of the seriousness of the situation. It wasn’t suddenly going to go away.

I felt well in the morning (we’ve heard that before) so I was taken by hospital transport to pick up the radiotherapy sessions. The one I missed would simply be added on the end.

Another night in Lewisham beckoned as the scan results were revealed. They were “initial CT head showed a left subdural collection and left sided cerebral edema. No acute changes from previous imaging. Second seizure steroid and anti-seizure medication. MRI showed again the left subdural collection and left sided cerebral edema”.

Translated into English(!) my understanding is left subdural collection is an umbrella term for stage like (expected) findings within the subdural space. The subdural space is the area newly devoid of brain and I guess there were UFO particles floating. Edema is the medical term for swelling.

Ultimately, the CT and the MRI both showed the same result. A brain that had been interfered with and left a cavity surrounded by lots of swelling. They didn’t show anything that was unexpected.

A decision was made to up my steroid and Keppra intake until further notice. Added to the Keppra was a drug called Clobozam which is in the benzodiazepine family (alongside Valium). The intention of Clobozam is to calm the electric signals in the brain when you sense a seizure is imminent (not just to use on future long-haul flights).

3x days after being admitted to Lewisham, I was discharged with a big bag of drugs and to see what happened next. In the relentless life of an active cancer patient, that initially meant being back at Guys for 0945 for fraction 4 of radiotherapy.

Once you’ve had 2x seizures you are classed as being epileptic and that comes with implications. For example, you can’t drive for a year after your last seizure. In 2014, a dustbin lorry crashed into shoppers in Glasgow, killing 6x people. The driver had a seizure and passed out at the wheel resulting in these tragic circumstances.

After 2x weeks of radiotherapy sessions, my own personal eligibility to drive was pushed back when I had another tonic clonic seizure. I was still at Jo and Gemma’s as the regular succession of events played out.

This was my fifth generalised seizure. Without panic, they successfully saw me through this one without the help of paramedics or hospital staff but my brain obviously didn’t know if it was coming or going. It had been zapped from all sides, inside and out.

The neurologist (via the CNS nurses) upped my Keppra dose to the highest amount that can be prescribed and changed Clobozam to a medication taken daily, morning and night. Hopefully this would be enough to keep the seizures at bay – but it’s no exact science.

When this all began, I thought I would be laid up in bed 24/7. I wasn’t. I was up and about every day but these seizures were hitting me right where it hurts. I was caught in the middle. Not camped in bed, but not able to progress.

Working was very much off the radar. As a freelancer, you’re either in or you’re out. There’s no softly, softly approach to get back in the swing. I was definitely out. That’s why you take out the insurance with critical illness cover, right?! (or not, in my case).

Because of this, my work friends and colleagues, old bosses and trainees got wind of my inability to work and they generously setup a JustGiving page. I would never expect this, ever. The level of generosity was insane and still in shock, I am SO grateful to everyone who donated some of their hard-earned cash. It took away a lot of my financial worries and pressure and it was an incredibly overwhelming act from all concerned. Thank you.

I know exactly how lucky I am.

Radiothera-PALS…

#11

I met my consultant oncologist, A~, the day after having my stitches out. A~ explained I would be undergoing 6x weeks of radiotherapy beginning at the start of November 2018 (3x weeks later). They needed time for brain swelling to reduce and I had a few other tasks to do before I would be ready to start.

Radiotherapy uses high-energy rays to destroy cancer cells. Unfortunately, any normal cells caught in the crossfire will also be damaged. The difference is, normal cells can repair themselves, cancer cells cannot. I’m not sure of the science behind that but it’s pretty impressive.

Radiotherapy is best served in short, daily treatments. I would be having 5x treatments per week. Each treatment is medically referred to as a fraction and having 2x rest days per week ensures less damage is done to the normal cells around the tumour. Disrupting heathy cells can trigger side effects and A~ explained they tend to be fatigue, sickness, skin reactions, issues with blood counts and the one most associated with any cancer treatment, hair loss.

A lead radiographer, R~, was also present. She explained how the gradual increase of radiation eventually results in hair loss. Radiotherapy radiation is measured in units of gray (Gy). My 6x week treatment would fire a total of 59.3 Gy at the tumour and hair follicles get bored of being zapped around the 18 Gy mark (AKA after 2-3 weeks). Hair is also lost where radiation leaves the body (the right side of the head in my case). It usually comes back but sometimes with a different texture and/or a totally different colour – imagine if it came back white and curly?! How bizarre!

Personally, I could shave my head and wear a baseball cap and nobody would really notice. For others, it’s a far bigger and stressful issue and there are some really upsetting stories in other blogs I’ve read. Cancer can be a real f***er sometimes.

The next part of the briefing was about radiotherapy causing infertility so I was offered sperm banking and took up the offer (not literally there and then). I provided 3x samples which will be kept frozen for 10x years and beyond that, I gave consent to be an anonymous sperm donor. I didn’t realise this decision would strike up as much conversation as it did. It’s not important for this blog but it was interesting to hear different points of view.

The love nest…
(I hope this picture doesn’t offend)
October 2018

Moving on (swiftly), my head would need to be kept very still during radiotherapy so I needed a personalised mask, shaped to the contours of my face and fastened in place to reduce it’s mobility.

To do that, I had a mould created. It was quite an odd experience. I laid on my back as a warm, soft plastic mesh was dropped onto my face and spread it’s way down the sides of my head. It was like a warm flannel but with slits. It resembled a roll of lattice pastry – I was being made into a human steak bake!

The plastic soon becomes hard. It needs be a snug fit, maybe a tad claustrophobic but radiotherapy sessions only last 2-3mins so it’s completely bearable. Most of the session would be spent by radiographers getting you in the right position and in semi darkness, they use coloured beams to make crosshairs on the mask to get perfect accuracy.

The mask. There’s no mistaking that nose…
October 2018

The treatment is painless, the radiotherapy machine makes a tiny bit of noise and although it doesn’t touch you, it does rotate fully around you firing from several different directions. It doesn’t take long to realise the importance of the mask.

My radiotherapy sessions would all be at the Guys Cancer Centre which opened in 2016. It delivers 80,000 radiotherapy treatments per year and is the first place in Europe to offer radiotherapy above ground level. For radiation shielding and safety reasons, it has always been more cost effective to put radiotherapy rooms in the basement. When GCC was built, they absorbed that extra cost and dedicated a bright and spacious floor to radiotherapy treatments. Compared to the dingy, morgue-like feel of a basement, this place is airy and light and that really does make a difference to the patient experience.

We got to meet and know plenty of familiar faces during radiotherapy, both staff and patients. My sister drew up a list of friends and family to accompany me to the sessions, not that you need accompanying but people wanted to help and assist where they could – this was the prefect scenario.

After a few sessions of introducing people to the reception staff, I was called out (by receptionist K~) on introducing too many people as my best friend! Guilty! Nevertheless, this group (of best friends) became affectionately known as the radiothera-PALS.

What a legendary bunch…! Thank you.

My first radiotherapy session was on 05/11/2018. To help create a feeling of calm, soft music is played in each room. The radiologists ask if you have any requests but as I didn’t, the smooth sounds of the 90s continued. They placed the mask on my face, clipped it in position and set the beams. I gave them a thumbs up and they left the room. Only then did I actually listen to what was playing…it was the Eva Cassidy’s version of Fields of Gold, a beautiful song but ranked in the top 5x songs played at funerals! Seriously?! When I told the radiographers post treatment, we laughed and they apologised stressing it was just a random playlist. You couldn’t make it up…!

The diagnosis…

#10

The MDT meeting took place 13x days after my operation. A few days later, we met L~ (another female member of my favourite CNS team) for official news of the operation, biopsy and to discuss the next steps.

We met at KCL, in the Cicely Saunders institute which is a quiet sanctuary away from the main building brimming with information, help and research for cancer suffers and anyone affected by the disease.

After our initial meeting with J~ in September, we were already prepared (albeit with fingers crossed) for L~ to say I had a malignant tumour. That meant grade III or grade IV. Brain tumours are graded 1-4 according to their behaviour, the rate at which they are growing and how likely they are to spread to other areas.

Each year in the UK, approximately 4,000 people are diagnosed with a low grade (1-2) tumour. 5,000 are diagnosed with high grade (3-4), fast growing ones.

Together with my mum and Jo (always in support), L~ gave us the news. The estimated size of the tumour nucleus was 5x5x5mm. The resected tumour came in 2x seperate specimens. The first was multiple pieces of white tissue (the largest measuring 9x6x4mm), the second was a sizeable single piece of brain tissue measuring 35x30x20mm. Both specimens were sent to the lab for diagnosis. The results confirmed a grade III brain tumour, more commonly known as an anaplastic astrocytoma (maybe not that commonly known to be fair).

Brain tumours are usually named after the type of cell they grow from.

Anaplastic means the cells divide rapidly and do not resemble normal cells (in structure or function).

The astrocytoma part is when a tumour grows from a particular type of cell called an astrocyte. Hence, anaplastic astrocytoma. They account for approximately one third of all brain tumours.

Beyond the type and grade of the tumour, factors including it’s position in the brain, the size and shape and your age all have an effect on your prognosis. Essentially, this means every case is unique and it’s impossible to give one. Obviously, that doesn’t stop you googling and according to the National Cancer Intelligence Network (from a study in 2013), they surmised:

Low grade (1-2) astrocytoma:

• more than 90% of people with a grade I astrocytoma survive for 5x years or more

• around 50% of people with a grade II astrocytoma survive for 5x years or more

High grade (3-4) astrocytoma:

• more than 20% of people with grade III astrocytomas survive for 5x years or more

• around 5% of people with a grade IV astrocytoma survive for 5x years or more

It’s worth highlighting the MORE THAN and the OR MORE words used above – some people live much longer than 5 years so it’s important to read and interpret the stats correctly. It’s also important to remember not everything we read on the internet is true…!

This is a really tough paragraph to phrase correctly but when L~ told us it was only (only) grade III it came with some relief. I’ve met people with a grade IV diagnosis and it’s a tough one to take. But even a grade III tumour can spread to other parts of the brain and develop into a grade IV tumour given time.

For now, my next stage would be intensive treatments of radiotherapy and chemotherapy.

Although the operation was deemed a success, there was some tumour left behind. L~ explained the cancer specialists (the oncologists) had discussed and decided on targeted radiotherapy first, followed by a sustained dose of chemotherapy to keep what remained at bay.

So, there you go…that was my Christmas and new year sorted as well as next Easter, next summer, my birthday, my work schedule, everything. I’m not ashamed to say it was a bit overwhelming but at least we (as a team now, including the oncologists, neurologists, the CNS and my family) had medical options and if you have options, you can make a plan and when you have plan, there is always hope.

I received an insane amount of support during this period and I am so grateful to everyone. One particular get well soon card read ‘this tumour picked the wrong brain to take a ride on’.

Agreed…

After my discharge and before the meeting with L~, I saw the nurse at my GP practice to have my stitches out – all 37x of them which was a little daunting she said. What didn’t help was the incredibly talented person who tied them together with only 1x break. Grandmother would be very proud…!

The aftermath…

The fluorescent positive area of the tumour had been sent to the lab for diagnosis. This would involve analysis of cells by a neuropathologist, looking for particular patterns that are characteristic of different grades of tumour.

The neuropathologist report would need to be published and discussed at a multi discipline team meeting before I would have any information and that, inevitably, takes time. An appointment was made for 11/10/2018, 13x days after my operation.

Post surgery, I spent the first 24x hours in a dark environment because of the Gliolan/medical St Tropez effect. The head bandage would remain for a further 24x hours.

I was on a heady mix of pain killers, steroids and anti-seizure medication. The swelling and trauma to my brain meant the potential of a seizure was very real. In the first few days, I was told to expect speech errors and I had a definite slurrrrrrrrrrr but it was word searching (in conversation and text) I struggled with most. It wasn’t scary, as it was to be expected, but it was still quite unnerving.

In the medical notes of my operation, it reported ‘mild word finding difficult at times’. I was asked how to make a cup of tea and although I could make the gesture, I couldn’t remember the word ‘stir’ (for the record, I obviously poured the hot water first, milk second – none of that milk first malarkey). I referred to a picture of a jug as a water bottle, called a marker pen a pencil but my personal highlight was my answer to where does the Queen live? ‘Buckingham Paris’…!

I was discharged 4x days after my operation and went back to stay with Jo and Gemma. The plaster would remain for another 8x days before I had the stitches out. Somewhere in the middle was my 38th birthday. We went for a brisk walk in the sunshine at Greenwich Park to celebrate. It was really nice to be out and about, breathing in the fresh air. The family took my lead and I felt great (considering).

We walked a fairly long way in the end. Impressive, 6x days after being in the operating theatre. In hindsight, it was quite stupid. I had awake brain surgery 6x days ago. SIX days…!

Sipping my sparking water later in the day, I came over really faint and got the feeling I was about to have a seizure. There were no shakes, there was no speech loss but I did too much, too soon and all the negative experiences came flooding back.

Thankfully, I didn’t have a seizure but this was a real wakeup call and a serious moment of realisation for me. Like it or loathe it, life as I knew it had changed and I needed to make adjustments and decisions about things I never had to previously. This was the new me.

The day of my operation was also the first day of the 2018 Ryder Cup golf event in France. I would have been working in Paris, all being well. For those who don’t know, the Ryder Cup is the biggest event on the golfing calendar where Europe plays the USA. The European team were victorious and picked up the trophy with captain Thomas Bjorn at the helm. After the event, I received a very unexpected message…

Thanks Thomas 👍
October 2018

Upstairs, downstairs…

I went down to surgery at 1000…I came up from surgery (plus recovery) at 1700. If my math’s are correct and there are no side effects from my operation, I make that a total of 4x hours. Ha! It was a grand total of 7x hours.

During surgery, any small mistake could result in long term damage to my speech. The possibility of losing the whole concept of language was real – I wouldn’t even be able to resort to WhatsApp.

Jo was concerned that the seizure would impair my ability to answer Hy~’s questions, resulting in more mistakes and therefore less resection of the tumour. Unfortunately, according to my medical notes, ‘MRI scans showed the enhancing component of the tumour had grown in 2x weeks since initial diagnosis’ so despite the unfortunate circumstances, we needed the green GO light whatever.

In December 2019, I requested my medical records (not everybody’s cup of tea but definitely mine). That’s how I know about the growing tumour in the paragraph above. What medical records can’t document is the despair a family goes through on a day like this. You can try and busy yourself but that horrible feeling in the pit of your stomach never goes away. At KCL, a regular haunt for patients and families (including mine) is Ruskin park next door. After a recent and routine trip to see the neurologist (August 2019), I suggested we had a coffee in the park – “I can’t go in there – it brings back too many memories…” was the unwilling response.

The family made a decision to go downstairs to the hospital chapel for some peace and a moment to take stock. Out of the blue, with no knowledge they were there, Hy~ appeared, rising up from the operating theatre like a phoenix from the ashes.

The fact she took time to find them was such a gracious and humbling act. It was somewhere around 15.30 and my family, desperate for news, were so happy to hear everything had gone to plan downstairs. I was in recovery and, most importantly, doing well.

Second to that, she said I had done very well with my answers during surgery. Hy~ said I managed to stay awake for 2x hours including ‘the golden hour’ (where you perform at your best). As mentioned before, the longer you are awake, the more resecting can take place. Well done James, even if I do say so myself…!

What a relief.

Upstairs in the relative’s room, J~ came to see my family before they were allowed to see me. He confirmed the operation had gone really well…so well they were going for a gin and tonic in my honour. I didn’t realise my alcohol intake was such an in-joke!

He said they were relieved when they exposed the brain as the tumour was sitting on the top surface rather than shrouded in good brain. He described it as scooping the top layer off of a jelly. Think of that next time you have a trifle…

He was honest and said they did want to resect a bit more of the cavity but the 2x hour window was looming, I was obviously getting tired and that was affecting my speech. He also mentioned about my struggle with similes. Whenever you see me in the future, you need to ask me ‘what is another word for ___insert here___?’.

A fluorescent positive area of the tumour was identified and a sample taken for the biopsy and diagnosis.

What a grueling, upsetting and incredible 12x hours that was. Wow.

Ready to sleep at 1900ish…
September 2018

The operation, FINALLY…!

The initial stages of the operation were performed under general anesthetic, my hair was shaved, a reverse C shape incision made in the scalp to reveal my boney skull where a portion was cut out. At this point you still can’t see the brain as there is another layer called the dura mater under which the brain floats in a clear fluid of nutrients and proteins which needs to be unzipped. Zzzzzzzip…ladies and gentleman, please welcome the gently throbbing, undulating 3lb masterpiece that is THE BRAIN…!

2x urban myths about the brain are 1) it is a muscle – it’s not and 2) it’s red, it’s not. Despite the fact it gets more blood flow (20%) than your bicep or your heart (both of which are red) it is actually white. The fluid surrounding the brain is odourless, unlike blood. The brain’s texture is peculiar – it’s soft and squidgy. You could push your finger through it!

I remember being woke up by Ho~. She did the usual checks (name, DOB, etc) to judge whether I was in a position to proceed before stepping away. Maybe she went to get a jug of tap water in case that mid-surgery seizure happened? Who knows.

I had a sore throat from the tube that had been in during the general anesthetic stage but I was comfortable enough. Hy~ moved in and we swapped pleasantries. Despite being half naked in a room full of relative strangers, everything was fine!

The neurosurgeon’s auto-pilot prep was complete and they were waiting for Hy~ to give the thumbs up to begin. Our goal to access the tumour would begin by finding safe corridors in the brain to cut through, find the nucleus, shell it out and remove. Finding those corridors would be dictated by the answers I gave to the questions Hy~ posed.

Behind me, B~ and V~ had a small two-prong device that could stun areas of my brain with an electric current. Answering questions correctly, whilst being stunned, meant the surgeons knew this corridor could be cut and removed. If the stun resulted in silence, answering questions incorrectly or caused issues with parts of my right side (wired with electrodes), the area would be deemed inaccessible and marked accordingly. It was a 3x strikes and you’re out rule for each stun.

!!!SPOILER ALERT!!! Brain pictures imminent…

The operation began with simple counts whilst the level of the current was adjusted and set. Then the mental exercises began (verbs, non-rhyming words, sentence finishing as explained before). I can’t remember how many exercises I did with Hy~ but the initial objective of this operation was to learn which areas the surgeons had to avoid to prevent any long term, life altering effects. Armed with this knowledge, B~ and V~ could then go about removing the tumour.

The following picture of my brain was taken during surgery. It shows 9x spots where the electrical current caused issues and would therefore be inoperable:

1 – hand and forearm

2 – hand and forearm

3 – hand and face

4 – hand and face

5 – hand and face

6 – face

7 – face

8 – speech arrest

9 – action naming arrest

The surface of my brain had become a map which allowed the resection to begin. There wasn’t any extra noise, no pain and thanks to Hy~’s accurate and honest explanation I knew what was happening and why. Hy~ kept chatting, occasionally letting me close my eyes but remained in my eye line or by my side throughout. She knew where the surgical line could be drawn.

I was content physically and mentally but after an hour or so, the clamp to keep my head in place was becoming uncomfortable (as Hy~ predicted). I’m surprised it took that long to be honest. Maybe I was previously too concerned to notice.

The minimum time required for a successful awake craniotomy is 1x hour. The maximum time they can expect a person to stay awake in surgery is 2x hours. Needless to say, the longer you can stay awake, the more they can resect. Makes sense…

The next picture shows my brain post the initial resection. There were 4x spots causing issues:

1 – phonological errors

8 – speech arrest

9 – action naming arrest

10 – action naming arrest

Phonological errors (officially arcuate fasciculus) are difficulties in producing speech. I needed to say the word ‘fish’ but I couldn’t pronounce it properly – all I could manage was ‘fisss’, no matter what, ‘fisss’…

After more than 90x minutes in the spotlight, I was tired. I started to struggle with similes, most memorably ‘what is another word for beautiful?!’ My mind was totally blank. Consistent errors were creeping in so together they called a halt to proceedings just shy of the 2x hour slot.

Ho~ put me into a state of heavy sedation for the remainder of the operation and recovery. Time for B~ and V~ to put my head back together, leaving the brain buoyant inside the dura. A pretty stitch is made and a syringe of water fills the void. The body mixes it with the necessary proteins and nutrients – quite amazing really.

Awake craniotomy. DONE!

I’ve met some great people during this experience, one of whom is Carolina. Originally from Spain, Carolina has lived in London for over 5x years and required an awake craniotomy like me. Unsurprisingly she speaks both Spanish and English fluently. As a result, she needed to do the vocal and mental exercises during the operation twice, once in Spanish and once in English – and I thought I had it bad?!

But here is the crazy bit…

If the surgeons accidently affected the parts of Carolina’s brain associated with her second language (English), her mother tongue (Spanish) would remain unaffected. However! If they affected her mother tongue (Spanish) she would lose abilities to speak both Spanish AND English. How mad is that?!

What a terrible support act…

Did you know that if you have a seizure during open brain surgery, like an awake craniotomy, you can calm (or stop) the seizure by simply applying cold water directly on the exposed brain? No? Well you do now…

Unfortunately, we hadn’t got that far when my tonic clonic seizure took place, we were still in the ward.

Unsurprisingly, I don’t really remember much about what happened during and post this seizure so this is my sister Jo’s version of events. My sister is absolute gold – we have a very special relationship, our whole family does. This tumour based scenario isn’t anyone’s fault and yes, it’s pretty sh*t but I’m glad that it’s happening to me (as they each wish it was happening to them instead). We have a strong bond which I never take for granted.

A sister, a brother and an unbelievably scary looking mouse…
Eastbourne 1985

Anyway, before the generalised seizure fully kicked in, I was murmuring my way through the conversation with aneasatist Ho~. As soon as I began to fully fit, she pressed the emergency alarm and about 3 or 4 doctors ran in. The cannula had ripped out of my arm, blood was spilling as I writhed around on the bed – a scene that will forever spark chills to my family stood watching.

Ho~ suggested the best thing was to take me down to theatre as they would be better equipped to deal with the situation there. By this time, I had stopped fitting but I wasn’t lucid in any way and quite agitated (apparently I kept ripping the special (and necessary) Gliolan blanket off my head). We all look better with a suntan though, right?!

So as I was being wheeled downstairs, my family were left in the relative’s room terrified, in shock and truly upset about what just happened. As if the situation wasn’t tense enough…

At this point, nobody knew if the op would go ahead – they needed to discuss with the 2x consultant neurosurgeons tasked with removing my tumour (V~ and B~). It takes about 15 years of study to become a brain surgeon and for all I knew, I could’ve been laying on the pre-op surgery bed that long – I have ZERO memory of being there but thankfully it only took 30mins for the decision makers to announce they would go ahead as planned. They considered postponing but at that point and if I seized again whilst ‘open’ they could easily stop it with ____ _____ ? Cold water! I can make a brain surgeon out of you yet…

Upstairs, my family met B~ and V~ before coming to see me in the pre-op room. Jo was talking to me and apparently I was calm but definitely not myself. Again, I don’t really remember this to be honest.

The seizure happened around 9am and it was now shortly after 10am as I was finally wheeled into the operating theatre. Time for B~, V~, Hy~ and me~ to get to work…

Throughout the public corridors of KCL, there are posters on the walls promoting fundraising opportunities. In 2017 my dad’s mum, my nanny Flo, passed away (first picture L). Now look at the poster on the back wall. The resemblance is uncanny. We all took comfort from that picture and even now, whenever we visit KCL, we always pop and say hello! x

The operation (with an unexpected support act)…

It was the morning of 28^th September 2018. I was woken by the nurses at 6ish for news of the operation. A newcomer to me, Ho~ the anesthetist, knocked and entered the room. She told me the operation would be going ahead as initially planned; the fully awake option deemed unnecessary. I would be going down around 8.30.

Ho~ was happy to take on the task of my curious heartbeat and get me through this operation. She was exact, she was to the point and reassuringly confident. That said, she did admit that on a different day and for a different operation, it definitely would be postponed for further cardiology tests!

My family arrived whilst we were chatting and decided to wait outside. When they did enter and heard the good news I think they, for a couple of seconds, celebrated a mini victory at last. 1…2…click. Back in the room.

If you remember from ‘the BIG reveal’ blog previously, the official name of the operation was ‘a stealth guided Gliolan and ultrasound-guided sleep awake sleep left sided craniotomy for tumour resection with intraoperative neuro monitoring’.

I don’t know about the stealth guided element, I don’t remember people scaling from the ceiling with medical tools but I can tell you about Gliolan. Also known as 5-ALA, Gliolan is a relatively new medicine that can help identify brain tumours by causing them to glow pink under a specific light.

Brain tumours can look like healthy tissue so it can be difficult to know what’s normal and what’s abnormal. The picture below shows what a difference Gliolan can have – pretty amazing huh?!

The pink glow of a tumour under Gliolan.

The bizarre part with Gliolan is after administration, exposure of eyes and skin to strong light sources, sunlight or bright indoor lighting need to be avoided to prevent skin reactions similar to getting serious sunburn. When it was time, I would be wheeled down to surgery WITH A BLANKET OVER MY HEAD. Seriously! The people in Costa Coffee (and there a lot of CCs in KCL) would think I snuffed it. Or maybe I was a celebrity being wheeled downstairs to surgery anonymously?! Let’s go with the latter…

I took my magic potion and half an hour later the hospital porter arrived to take me down to surgery. It was almost time.

There weren’t any medical staff in the room, just my family. I don’t know how quiet and absent I had been but I noticed my right hand was beginning to jerk like the start of a seizure. I could still talk and called in Jo’s direction ‘my right arm is going…’ and lifted to show my hand shaking. She dashed out and got a nurse, a doctor, anyone in scrubs but it was the aneasatist Ho~ who came in.

By this point, I started to lose my speech. The seizure was beginning to take over. When asked (and I remember this) what my name was…I couldn’t say it. I heard the question, I knew the answer but I didn’t know how to answer. All I could muster was a smirk and a slur. “Do you know where you are?” Smirk. Slur. “When is your birthday?” Fffffffff5ith (correct)…Ooocttttttober (correct)…2018. At least I got two out of three right!

At this point, the inevitable happened. My head rolled back and if you’ve read my previous blogs or know anything about seizures, you know what happens next. My mum, my dad and my sister watched me struggle on the bed having a tonic clonic seizure – I cannot begin to tell you how distressing this was for them. I imagine it happening to someone I love. It’s an awful thought. Their life changing before your eyes and there is nothing you can do about it. Horrible.

In September 2018 (the same month as my operation), Gliolan was partially rolled out in the UK. In the postcode lottery of specific treatments, it was something available to me (fortunately). The late Dame Tessa Jowell, who died of grade IV Glioblastoma multiforme tumour (12x months after her diagnosis), urged the government to make 5-ALA available across all the NHS in one of her final speeches to the House of Lords. She also comments of the lack of funding for brain tumour research. Watch the appeal from the former Labour MP here. Heartbreaking.

Dame Tessa Jowell
17/09/1947 – 12/05/2018