~ astrocytomajames ~

Re-E-wind…

#24

Sorry for jumping ahead to 2020 in the previous blog but I thought 1x year seizure free was an acceptable reason to do so.

Let’s go back to Autumn 2019 (cue the wavy crossfade and harp sounds)…

3/4x days after being discharged from hospital, my symptoms from campylobacter had pretty much vanished. The day after completing my course of antibiotics, I had another day at work scheduled. It was another chance to put a tick in the box of being back to work. I’m glad to say there were no issues, no shivers and no chills – the only negative was Arsenal winning!

Between September and the new year, I worked 15x days which gave me a needed financial boost. I might write a blog in the future about my attempt to get some financial support from the government and local authorities. I’ve paid all my taxes and national insurance contributions but it seems being out of work for over a year due to an incurable brain tumour still isn’t a clear cut case. Actually, I won’t waste my time with that blog. I’ll just coin a phrase from Little Britain, ‘computer says no’…

Come November, I was happy with the way I was feeling, buoyed by a few days at work and a fantastic break in the Cotswolds courtesy of our friends Dave H and Caroline. It was everything you would hope for from a countryside getaway; beautiful farm shop food, home cooking, local pubs with board games, bracing walks and coming home to a log fire. Such a fulfilling treat – thank you both.

Cotswolds fun, food and running in the rain!
October 2019

After this trip, I had my quarterly MRI scan and consultation with Dr C~. Her positive words and upbeat manner were comforting as the mouse marker hovered over the subtle changes from the previous scan.

That said, I did come out of the appointment slightly confused. As with the curiosity of psuedoprogression (blog #18), the phrase I couldn’t get my head round this time was reduced enhancement. Surely they are 2x contradictory words? Reduced (smaller) enhancement (getting bigger)?

That’s the advantage of having a super intelligent sister by your side at these appointments. She doesn’t forget or misunderstand a thing!

Over to you Jo…“it means there was less contrast on the scan, as in less blood being drawn to the tumour area which is good because the tumour needs blood to grow. So reduced enhancement means reduced blood to the tumour”.

This was a terrific scan result. I had endured 11x cycles of chemotherapy, with an increasingly active lifestyle and only 1x more to go. There was light at the end of this particular tunnel.

The last dose of Temozolomide…
November 2019

Officially, the last day of my last cycle of chemotherapy was Sunday 22^nd December 2019. A day I would be spending in Leicester at the annual Fossemas gathering of university friends. Compared to it’s humble beginnings back in 2007, it has developed into quite a gathering after 12x years. Good times.

The neurologist’s plan for 2020 was to let my brain settle for 5/6x weeks before having a ‘post all treatment’ MRI scan and a neuropsychological assessment.

A neuropsychological assessment provides an objective way of characterising cognitive, emotional and behavioural symptoms. It was a 3x hour appraisal so it was pretty thorough. It comprised of memory tests like retelling a story (multiple times throughout the session), repeating a sequence of numbers in the correct order/reverse order/missing out every other number. There were pictures of elongated shadows made by random objects which I needed to identify. We did some basic reading out loud and other exercises I recognised from my awake craniotomy.

As a result of that operation, I suffer with something called aphasia. This is an impairment of language which affects your production and/or comprehension of speech and your ability to read or write.

When I’m writing (by hand), I often write the word that’s in my head at that exact point and not the one I should be writing to construct the sentence I wanted to. For example, if I planned to write ‘wishing you a very happy birthday’, I might write ‘wishing you a birthday’ before realising my mistake.

The official report concluded that “tests of both verbal and nonverbal intellectual abilities are generally in keeping with his estimated optimal level of functioning”.

I also suffer with word finding difficulties which is more frustrating. The harder you try, the harder they become to find. I ‘errrr’ and ‘erm’ and say ‘sort of like’ a lot which I guess is one part of my brain giving another part some extra thinking time.

Most people think I act exactly the same as I did 18x months ago which must mean I only have mild cases of the above. But there are definitely times when I struggle verbally, even if the person I’m talking to doesn’t realise. My speech doesn’t roll out the brain and onto the tongue like it used to. Definitely not.

I had been in and out of KCH or Guys 3x or 4x times per month for almost a year and a half. There is a reassuring and strangely calming feel about that. The assumption being if anything was wrong, a member of at least one of the medical teams would notice.

In early February 2020 I had the first MRI scan post the operation, the radiotherapy and all chemotherapy. 4x days later we found ourselves in the neurosurgery clinic. It was a telling day.

I commented before about the busyness of these clinics – it’s insane. There are always people getting tetchy about delays. The appointments always overrun (there’s so much to discuss) and therefore the appointments are always late – it’s just something you need to accept.

It was my turn to be called.

It’s always a pleasure to see Dr C~, she inadvertently plays a big part in my life. I was only too happy when she quickly swivelled on her chair stating “your MRI scan results look great and whatever it is you’re doing, just keep doing it and I’ll see you in 4x months…”

Wow! That news and that release of any tension is a spectacular feeling and such relief for me, my family, friends and everyone else concerned. I’ll take ‘errs’ and ‘erms’ and the occasional word loss in exchange for that news, absolutely.

So that was then…and this is now. 4x months have passed and I’m waiting to speak to Dr C~ tomorrow (8th June 2020) about the results of my most recent MRI scan in May. In the build up to this, your senses definitely heighten. You notice that occasional throbbing pain, the 3x consecutive days waking up with a mild headache, some potential dizziness.

It’s difficult to express how I’m feeling because I’m not totally sure myself. Am I afraid? No. Am I Stressed? No. Am I depressed? I don’t think so. Scared? No. Nervous? A bit. Worried? A bit. Anxious? Yes. Am I calm? I think so. Am I excited? In a bizarre way, yes. Hopeful? Absolutely. Optimistic? Impossible to answer.

Is there a word to sum up the emotions of being a bit nervous and worried, quite anxious, calm yet slightly excited and desperately hopeful?

Probably not. But if you found yourself ‘erring’ and ‘erming’ trying to find one, welcome to my world(!)

Fingers crossed for tomorrow – I’ll be in touch.

Re: COVID-19. I emailed the CNS at the start of lockdown to ask if I was in the vulnerable category with underlying health issues. Their instructions were to simply follow the government guidelines.

It’s been a unique and unbelievably odd few months for everyone. I wish you all well.

Time travel…

#23

Today is the 29th May 2020. It is a landmark week for me. My last seizure was on 26th May 2019 so I am 1x year seizure free…!

It would be great if it was without the help of a lot of medication but hey, let’s not worry about that now. Let’s raise a glass instead!

I appreciate I’ve jumped the gun a bit here. My previous blog (#22) was based around food poisoning in September 2019 and I’ve leaped ahead to May 2020. Had anyone even heard of coronavirus back then?!

I’ll return to 2019 when I write the next blog, which you can safely assume will not involve a seizure.

So…here is a collection of photos with family and friends who have all played their part. There are lots of other people who should feature, but we obviously didn’t get a photo together!

You know who you are…

Horse racing in Windsor with family and fiancés. 2x days before my first seizure.
Summer 2018

Terry taking a Maxtix-style beating from Flo!
Autumn 2018

Winter walks and festive celebrations!
Winter 2018

The home medical team on a well deserved break!
Spring 2019

With Tom, Ella and Matt at Ben and Susie’s wedding.
Spring 2019

Who said running was an individual sport – it’s all about the TEAM!
Spring 2019

Awesome fundraising effort for The Brain Tumour Charity from auntie Debbie and her workmates.
Summer 2019

Leila and friends racing for life and Flo…just being Flo!
Summer 2019

BBQ fun at the Clark’s woodland retreat.
Summer 2019

I was with them all in sprit at The Open!
(Scottish) Summer 2019

The things you can find in London!
Summer 2019

My 39th birthday.
My first proper PINT since being diagnosed with a brain tumour 13x months prior.
Autumn 2019

Is it Christmas again already?!
Winter 2019

Working 9 to 5 (unlikely if you work in TV)…

#22

In September 2019, I was asked whether I would be interested in 2x days work in Southampton at an England international football match. Feeling fit and healthy, I happily said yes.

That decision was made easier by the fact I would be an ‘extra person’ onsite so if anything was to go wrong and I needed to take 5x, take a seat, leave, go home, etc there would be no implications on the job. Thanks to Ollie and everyone at Arena Television who helped place the next piece in the jigsaw of life with a brain tumour.

I have worked with Arena for quite a while on the ITV Sport internationals so it was great to turn up and see colleagues and friends for the first time in a long time – it was also quite daunting to be honest. I hadn’t worked for 375x days so it was super handy being an ‘extra bod’ as I think I did more chatting than rigging!

It felt good to be outside and back at work despite the drizzle. I carried anti-bac and wore gloves all day – I was taking chemotherapy pills only 3x days earlier.

We finished the rig and I headed back to my hotel. I was ready for a hot shower as it got quite chilly after sunset.

Stepping into the shower, I was cold. The chills turned to shivers as I stood under the water, notching the hot water temperature up and filling the room with steam. Post shower the shivering continued so I got under the quilt to try and warm up. I was sweating, yet my teeth were chattering. With social plans cancelled for the night, the alarm bells started to ring.

At home, I have a thermometer at my bedside because if/when my temperature hits 38.0 the instructions are (under chemotherapy) to go straight to A+E. Unfortunately, that was still at my bedside at home, not with me in Southampton. Lesson learned.

Dosed up on paracetamol, I felt a bit better in the morning. I dashed to Boots and bought a new thermometer. Temperature test: 38.1. Cause for concern? Yes. I called the GCC acute oncology helpline and explained. Their advice was to go to Southampton General Hospital A+E.

I started to feel quite poorly with cold and flu like symptoms. I had to call in sick for work which was a genuine first for me. Ollie was incredibly supportive and offered to pay for a taxi home to London. I declined but thanks again to him and everyone at Arena for their support.

Still benefitting from the effects of paracetamol (which prompts heat loss in the body), I felt groggy and sensitive but I felt okay.

So…despite the advice of the GCC helpline (sorry), I jumped on a train back to London and within 2x hours I was at home and in bed. I had a nap before checking my temperature again – almost 39.0 degrees. Fortunately, I live within 5x minutes of University Hospital Lewisham and went across to the Emergency Department there.

I didn’t have to wait long to see the triage nurse and was taken into a bay for blood tests and checks. I was seriously shivering now. I couldn’t get ‘warm’ even though my body temperature was still on the up at 39.0+.

My mum and Jo arrived and apparently my shivers and shakes looked pretty extreme. Chills/shivers are caused by rapid muscle contraction and relaxation which is the body’s way of producing heat when it feels cold. In this scenario, my body’s internal thermostat was offset and despite my high temperature, I still felt cold. Until your body temperature comes down you are unlikely to feel any better. I was admitted for the night.

In the ward I was put on I/V fluids and analgesia (a posh name for pain relief). I also had something called nystatin because I had a very white and strange looking tongue (likely oral thrush). My general observations were stable but most importantly my blood test results were all within spec, including the all-important white ones (supporting your immune system) which was a relief.

By this point I had developed a serious case of diarrhoea. If you are familiar with the Bristol stool chart (explained later if not) I was definitely in zone #7 – that’s all I’ll say for now. At one point, I shuffled down my bed before turning to Jo announcing “…I’ve just sh*t myself…” as I waddled with clenched bum cheeks to the toilet. Too late for the initial wave, already in situ for the next one soon after.

It was a tough night between toilet trips and squabbling patients. A nurse’s level of tolerance is incredible. They are the lifeline of the NHS and need to be confident, compassionate, caring and attentive at all times. How do they have any energy left to do things at home?!

The doctors did their morning rounds and although I was content, there was no change in my roaring temperature (39.6 overnight) and diarrhoea. I was given antibiotics and provided a stool sample for testing. That was easier said than done with such a raging torrent!

They needed to establish whether I had a bacterial (e.g. pneumonia/food poisoning) or viral infection (e.g. flu/coronavirus). On a molecular level, there are as different as chalk and cheese (so I read).

Being ‘contagious’, I was moved from the ward and given my own personal room and WC meaning I could sit on the toilet for as long as I wanted – pure heaven.

Annoyingly, I was due for my next MRI in 2x days so the oncology specialist at Lewisham (R~) had been in contact with Guys and the scan was cancelled. All other medication would remain the same. I’m quite regimental with pill taking at home but in hospital, that becomes somebody else’s responsibility. Not being able to keep that regime as strictly was frustrating and anxiety inducing for somebody prone to seizures.

I was kept in for a second night, still on antibiotics and still on Bristol #7. The stool sample results were not back but my temperature wasn’t really coming down. The growing assumption was it is likely to be a viral infection, not a bacterial one. The treatment for a viral infection is often to let the illness run its course so the antibiotics were withdrawn.

After 3x nights at Lewisham I was discharged on the viral belief because I was feeling better and the diahhroea and temperature readings were improving. The stool sample results were still not available so my mum took things into her own hands!

I was still a bit ‘loose’ downstairs but it was quite a surprise when the doctor from Lewisham called me 2x days after discharge to say the stool sample results were back and it WAS a bacterial infection afterall. Something called campylobacter which is bacteria borne in poultry AKA this whole saga proved to be nothing more than food poisoning.

Seriously?!

All that worry and stress. The anxiety of what it could be. The time and resources spent in hospital. The missed MRI – and for what? A dodgy piece of chicken. I was prescribed a course and antibiotics and sent back on my way.

Turns out I’m not allergic to work afterall…!

The Bristol stool chart was developed at the Bristol Royal Infirmary as a clinical assessment and diagnostic tool to classify the form of human faeces into seven categories:

As I said earlier, I spent a lot of time in danger zone #7 AKA ‘watery, no solid pieces, entirely liquid’.

With time on her hands, my mum dusted off her baking tins and got to work on an edible version of the chart!

The Bristol Stool Chart II
September 2019

Quiz time! Who can name which chocolate bar is used for each stool?!

Just to reiterate…

#21

In the last blog I spoke about alternative therapies and on reflection it sounds like I’ve brushed them all aside. That isn’t the case. The key factor for me is I am perfectly happy with the improvement shown with conventional medicine. I guess I don’t want to blur the lines of progress – I’m quite linear in that sense.

I will seek alternatives in the future and maybe I’ll regret not taking them sooner. For now, I’ll continue to kick the conventional can down the road for as long as possible, thoroughly regretting that choice in 5x years when cannabis oil is rolled out as a cure for cancer…!

I’m doing what feels right for me and although I’m unlikely to ever change my diagnosis, I believe I can affect my prognosis.

I have one more point to update with alternatives and that’s about diet.

There is an English chef called John Lawson who I read about last year. He worked under Gordon Ramsey and Raymond Blanc before earning a Michelin Star at his own restaurant in Melbourne, Australia. Unfortunately, he was diagnosed with a Grade II brain tumour in 2015 which put a pause on a very successful career.

In 2016, John was given the all clear and according to him “my recovery comes down to the food I eat. Food that helps your gut talk to your brain. Brain food that helps your body repair tissues. We are what we eat, we have to look after our bodies and nourish them”.

John follows a strictly ketogenic diet but opened another restaurant in Leigh on Sea, Essex (where he grew up) in 2017 where all food is prepared to “nutrionally support the body”. His story makes a compelling case.

https://www.dailymail.co.uk/health/article-6304529/The-chef-says-eat-beat-BRAIN-CANCER.html

We went to the restaurant for Sunday lunch and it was absolutely beautiful. Here we are (along with lovely Marina):

I think the above is actually long enough to be a blog itself…so I’m going to pickup with what I was meant to talk about in the next entry, #22…

Ready, steady, go…

#20

It’s taken a while to get to blog #20 and I’m only just writing about summer/autumn 2019. When I read it back to myself, I sometimes forget it’s about me which makes it quite surreal.

As chemotherapy cycles continued, I started to suffer with ‘metal mouth’. It’s exactly what it says on the tin (which is ironic). It was a vile and constant metallic taste caused by the cytotoxicity of Temozolomide. Snake venom is cytotoxic FYI. Pill taking made me wince and I needed a strong flavoured drink to get them down. Even now the thought makes my shoulders shudder a bit.

Prior to each monthly oncologist appointment, I had a blood test. They provide so much information. Here is a screenshot of my blood counts from cycle #9 (far right column):

The key scores for chemotherapy are red and white blood cells and platelets (RBC, WBC and PLT respectively). There are parameters for each and low counts outside of these are highlighted in red. My RBC are low (potential for anemia – see blog #14) but the fact it wasn’t a major change and I wasn’t suffering any side effects, the oncologist was happy for me to have chemotherapy the following week.

My hormone level is also low and although that isn’t critical for chemotherapy, this chemical imbalance could cause negative mood swings and mental anxieties.

Personally, I felt fine and put that wellbeing and positive state of mind to being active, having a routine and not being wrapped in cotton wool and told to stay in bed or stay at home.

That rule has bitten me on the a*se a couple of times by encouraging seizures in awkward places but I wouldn’t change that mindset – it’s made my body stronger and mentally more able to cope.

The main picture below was taken in early May 2019. It’s my mum, Jo, me, my dad and Gemma’s mum Maggie – we love Maggie! I was artificially inflated by the steroids (which increase appetite and body fluid retention causing weight gain) but I wasn’t really moving a lot at this stage. I look like Mr Potato Head…!

The phrase ‘physical activity’ sounds quite daunting when you haven’t done any for a while. I have never set foot in a proper gym with machines (excluding the one at GCC). For me, my movement started with Park Runs (June 2019) which gradually gave me momentum and confidence to start running by myself later in the year.

Running clears my mind and makes me feel happier and healthier which could be a placebo but it works for me either way. 1x year and 1x day after my operation, I ran my first 10km since all this drama unfolded -another fist pump moment.

There is a lot of chat online about alternative and complimentary therapies for cancer patients. I get sent quite a few links with eye-catching headlines but let’s be frank…

…there is no magic cure, medically or alternatively, and that’s why somebody dies from cancer every 4x minutes in the UK. It’s a permanently moving target.

I have followed the conventional path for brain tumour diagnosis and added some complimentary therapies along the way. Their aim is to help you feel and cope better with your cancer and treatment e.g. acupuncture, reflexology, reiki – all of which you can dip in and out of.

An alternative therapy is generally used instead of conventional treatment and include things like homeopathy, crystal healing and following special diets.

Cannabis oil has grabbed plenty of headlines in the past few years. It definitely has complimentary benefits of reducing (sc)anxiety and pain relief (not that I’ve had it personally). It has shown to reduce seizures but that version of oil is only prescribed for very severe cases of epilepsy i.e. it’s not the same stuff you can spend a fortune on in Holland & Barrett. If you buy it ‘elsewhere’, you don’t know what you’re actually buying and what affect it might have on your current medication.

As for it being an alternative treatment, I think pitching cannabis oil as a cure for cancer is a bit previous right now. Maybe in the future.

Homeopathy is natural medicine which aims to stimulate the body to heal itself. Crystal healing is based on the belief that we are all made up of different energies and if they become unbalanced or blocked it can cause illness. Crystals have the ability to heal the body in a therapeutic way. One particular crystal, a seraphinite, is credited with stopping the spread of brain cancer by healing nerves and damaged cells.

Special diets including the Gerson, alkaline and marcobiotic all have merits but I’ll let you research those. For me, conventional medicine had shown great success and until that is no longer the case, I won’t be straying too far from the norm.

That said, I do subscribe to diets that can increase brain health and the ketogenic diet and intermittent fasting seem to have that ability.

They are both diets in the common sense of ‘potential to lose weight’ but the goal here is to improve brain health. As I understand it (early disclaimer), the brain works best with a mix of glucose and ketones.

When we eat, glucose is absorbed by brain cells. If you don’t consume glucose (ketogenic) or choose not to eat (fasting) your body has a backup supply in the liver (glycogen). After 16~ hours the back up supply of glucose/glycogen is empty and your body starts to break down fat (the weight loss science) and that releases ketones into the body which are absorbed by brain cells instead.

Switching between glucose and ketones a few times per week is said to have the best effect on brain activity, cognition and focus. This process is backed by medical science and journals.

In my experience, a ketogenic diet requires quite a lot of preparation and planning but intermittent fasting is relatively straightforward. Being ambidextrous is also good for the brain FYI. And playing an instrument. And speaking more than one language. If only I concentrated more at school…

Ultimately, we all know a healthy diet mixed with some exercise and rest is good for you but it is impossible to cancer proof your body. You can run but you can’t hide.

Speaking of running(!) I had a real desire to participate in the 2020 London Marathon. I applied through the ballot but, for the tenth year in a row, I didn’t get a place.

I was feeling physically strong and mentally well so I applied for a spot to represent and fundraise for Macmillan Cancer Support and they said YES! What could possibly go wrong?!

Macmillan is guaranteed to be the first place people turn for help, guidance and information about any cancer diagnosis – I can say that first-hand. They deal with the widest range of people in their widest range of emotions and I’m very proud to support them.

The following picture shows the free Macmillan handbooks I picked up after being diagnosed with a brain tumour. Immediate help, guidance and information as promised.

Beyond this wealth of literature, their dedicated telephone support and online presence, over 1.5 million people receive personalised high impact support from one or more of the Macmillan services. I am one of those grateful people.

My body and my brain will ultimately decide what it wants to do in the future but my approach to facing cancer has always been to stay cool and take one step at a time. The perfect metaphor for running a marathon.

On reflection…

#19

I’m still enjoying the psuedoprogression conclusion of blog #18. You’ve got to celebrate the highs and that was definitely worthy of a fist pump. That said, there is a recurring theme of ‘2x steps forward, 1x step back’ in this blog and what I chose not to mention in #18 was another seizure in the midst.

A week after the MRI scan (the one that confirmed pseudoprogression), I spoke to a member of the neurology team who reminded us of the risks taking Clobazam as regularly as I was (10mg, twice daily). Clobazam is designed to be taken in the event of a potential seizure to calm and settle activity in the brain but the more you take, the less effective it becomes. It is also a member of the benzodiazepine family which means it’s potentially addictive.

In light of these facts, I agreed to try another reduction (10mg, once per day). This wouldn’t start until after the chemotherapy pill taking week of cycle #5 (mid May 2019).

Once the dose was dropped, I had 6x days without issue. On the 7^th I had another seizure in Ladywell Park (I really should stop going there). Fortunately, I was walking with my mum and Jo this time so there wasn’t any added pressure of approaching strangers with ‘please help’ cards!

This seizure was a weird one.

We left the house and there was loud music in the air from an event nearby. The sound system was reverberating around as we took the 5/6x turns to the park but it was still impossible to tell which direction the sound was actually coming from. It was changing with the wind and reflecting off the buildings. It was bizarre. We were definitely walking towards the music as it was getting louder. Jo agrees there was an oddity and I wasn’t imagining it.

Once we got into the open space of the park, the music was clearly coming from the left but the whole affair made me feel quite nauseous. I was leading but within steps of being on the grass I felt a sense of confusion and uncertainty – the aura if you like. There were no other symptoms but I told Jo and my mum I needed to sit down.

We have learned that the more information you can give doctors and nurses about your seizures, the better. Despite the potential to panic, Jo had the foresight to start a timer…

17:18 – first sign

17:20 – sat on bench

17:25 – hand started to go numb

17:26 – emergency 10mg Clobazam taken and laid on the floor in recovery position

17:28 – hand tingling/jerking began

Taking deep breaths, I could feel my eyes fluttering behind my eyelids as my right hand was jerking. Jo took a short video…

Seizure…
May 2019

17:31 – hand stopped jerking. Face began twitching/tingling

17:34 – face stopped tingling. Eyes still fluttering

17:37 – hand still ‘a little’ numb

17:38 – talking, still laying on the floor

17:45 – sitting up

17:48 – standing up/walking

I suffered a focal aware seizure.

In my opinion, the confusion caused by the reverberations and reflections of music caused my brain to misfire electrical signals and cause the seizure. Whether that’s right, I don’t know but it is a potential cause. However, another possible cause was highlighted when I referred to my homemade symptom spreadsheet below. The seizure day is the far right column.

As you can see, the 2x days prior I had been tired and a bit nauseous (FYI at the time of writing (April 2020) I haven’t been physically sick since my very first seizure in September 2018 – nausea here just means a sick feeling/stomach ache).

Probably more significantly, the sheet shows I suffered headaches. I know 5/10 doesn’t sound particularly painful but throughout 12x months of logging, I never scored any headache over 5/10. Maybe I should’ve acknowledged this information but how do you know 2x days of 5/10 headaches might trigger a seizure until you go out on day 3 and have that experience?

Later that evening Jo asked if we stayed at home, did I think the seizure would’ve happened? My answer was no. Headaches and tiredness suggest vulnerability but I maintain the music was the trigger. That doesn’t bode well for a freelance sound engineer does it…?!

We obviously consulted the neurologist via the CNS team and the Clobazam was once again raised back to 10mg, twice daily. It for 2 for 2 in our attempts and for the foreseeable future we abandoned ideas of reduction.

Those with a keen eye may have noticed (in the video) that I shaved my head. I decided to take the chop at the beginning of April. The hair on the left side of my head was slowly growing back but the receding hairline elsewhere is nothing to do with cancer treatment – it’s just family genes!

I was being slowly weaned off the bloating steroids but the next couple of months passed seizure free and I was encouraged by my tolerance of chemotherapy side effects and general sense of wellbeing.

I started going out which was great (not out out Micky Flanagan style, just out). I went to Sheffield and stayed with my friend Eddie and his family for a few nights. I went to another great wedding, this time with my Leicester friends to celebrate Dan and Danielle’s big day. I saw people I hadn’t seen since this drama began and I was happy to talk about my experiences. I actually found that quite therapeutic to be honest.

I was becoming more confident with my body and that was undoubtedly helped by a 10x week physical rehabilitation course at the Guys Cancer Centre. The weekly classes cater for a wide selection of people, each suffering with different types of cancer. It was nice to interact with these people and interesting to see how people were dealing with various diagnoses.

For me, it was enjoyable to put my body (more specifically my head) under stress and strain in the safety of the GCC gym. The talented team who work there were very encouraging and after 5x sessions, I felt confident enough to jog my local Saturday Park Run alongside my housemate Scott and Gemma.

This was a real landmark moment for me and moving forward, the weekly Park Run became equally part of my routine as setting a 0745 alarm to pop my first dose of daily pills.

Despite ongoing chemotherapy, I genuinely started to feel like I was getting my life back and it felt great.

Fake news…

#18

Towards the end of April, 2x days before my scheduled MRI scan (post park seizure), was the London marathon – one of my favourite days of the year. I’ve been going for as long as I can remember. It’s the most amazing, inspiring and emotional day for participants and runners alike. It’s a really important one for charities too. In 2019, the event raised a record-breaking £66.4 million, setting a new world record for an annual single-day fundraising event – for the THIRTEENTH successive year!

2019 was a particularly special marathon for me, having benefitted from the help and charity of Macmillan Cancer Support, Brain Tumour Research, The Brain Tumour Charity, Brain Research UK who all need this critical funding. There is a widespread number of worthy charities who benefit from this day and long may that continue.

The marathon fell during my chemotherapy fraction #4. In the past, we would try and get to as many cheer points as possible but we settled at a static point between miles 4 and 5 in Charlton. We cheered everyone from the front to the back. What an amazing atmosphere and if you could bottle and share the human spirit shown on that day, we would be in a fantastic place together now.

Anyway, enough of the London marathon pitch. I had a MRI to attend and a consultation with my neurologist Dr C~.

Dr C~ is much revered amongst those in the medical know. I can only comment on her nature, delivery and temperament which are all superb. I suppose that’s easier when the news is positive but when the chips are down…that’s a true test of character.

A quick reminder that a brain tumour is created when normal working brain cells go wrong and they become abnormal. These divide, making more abnormal cells which eventually forms a tumour.

Below is a picture of my very first MRI scan from September 2018.

With use of a contrast agent, the lesion (abnormality) appears brighter than the surrounding tissue. The contrast travels through the bloodstream and shows the amount of blood going to specific organs and tissue. Brain tumour cells often require more blood than normal ones and the contrast makes them stand out in a MRI image (as above).

The following image is taken from my scan in February 2019 (post the operation, post radiotherapy). You can see the illuminated area has disappeared and any remaining abnormal cells seem dormant. A terrific result.

Unfortunately, the pictures from my MRI scan in April (post park seizure) had a different look as you can see below. There is a visible area of white shading exposed by the contrast agent in the bloodstream.

I remember that sinking feeling. A major operation…6x weeks of radiotherapy…about to begin cycle #5 of chemotherapy…and the abnormal cells were back and worryingly whilst on treatment. It was not the result we were looking for.

Dr C~ went through and explained the scan to us. She reiterated the relevance and significance of the illuminated white area. Senses heighten when someone so experienced and respected explains the potential seriousness of a situation.

The good thing about having such an experienced and respected neurologist is their attention to detail and knowledge gained over years of practice.

To me, the white area existed solely because of abnormal cell division (a very valid and potential reason). However, Dr C~ was quick to offer another explanation; pseudoprogression (sue-dough progression).

Okay I’m none the wiser…what does that mean?

In her reassuring manner, Dr C~ explained that pseudoprogression is a medical term that refers to image changes which mimic tumour progression; it’s not necessarily actual tumour progression. The changes are caused by external factors.

When you break it down pseudo means fake or simulated and coupled with the explanation, the word isn’t as confusing as it initially sounds.

Dr C~ explained that Temozolomide, my chemotherapy drug, was a regular cause of pseudoprogression. Research says 30% of patients with a brain tumour (post radiotherapy and combined with Temozolomide chemotherapy) suffer with pseudoprogression. Most cases occur within the first few months post radiotherapy AKA the stage I was at.

Walking out of the consultation, we were a bit confused. I didn’t really know how to feel. It was potential bad news shrouded in positive medical explanation. Dr C~ requested another MRI a month later which would reveal it’s true identity.

The day before that scan, I was at the wedding of my friends Ben and Susie. Like you see in the movies, they were high school sweethearts who both went their own way before finally getting back together. It was a great day. I had a few drinks which always comes with the mental battle of whether I should or I shouldn’t. Anyway I did, I had a brilliant time and without any notable side effects. Winner!

The Monday consultation was at 0805am so there wasn’t much thinking time between the wedding and the appointment, no time for scanxiety (anxiety and worry that accompanies the period of time before receiving the results of a medical examination).

Myself, my mum and Jo shuffled in nervously before Dr C~ very quickly told us the white shading had reduced and was, as she expected and we all hoped, a case of pseudoprogression. Such a relief! This confirmed there wasn’t any actual progression of my tumour and here is the evidence below:

It was a comfort to know what we were doing was making a difference and gave us all huge satisfaction.

Although I never get too carried away. One day, there will be a scan that shows tumour progression. That’s the reality of the situation.

Pseudoprogression…
April 2019 vs June 2019

Until then, let’s embrace the good news!

Give me a P…P!

Give me a S…S!

Give me E…E!

Give me a U…U!

Give me a D…D!

Give me a O—O!

You get the idea…

The comedown…

#17

Before setting off for Utrecht in April 2019, I looked into some new travel insurance given my new circumstances. At that time, my policy was with Churchill who, after a relatively short conversation, said that they were not willing to upgrade my insurance. “Ohhhhhhh no, no, no, no, no” they said.

I did a moneysupermarket search and the usual companies appeared with a section for new applications for people with pre-existing medical conditions. About 10 years ago, my nan was taken into a Spanish hospital with heart issues and to cut a long story short, she needed to be accompanied on the flight home by an English doctor which would have cost her £1000s if she didn’t have the right medical cover. Check your policies people!

Each of the well-known companies couldn’t or wouldn’t offer me insurance so I went onto the Macmillan Cancer Support forums for ideas. Sure enough, there were a few recommendations of smaller, independent companies who specialise in cover for cancer patients.

I also phoned Macmillan, and in their customary understanding and compassionate way, they hinted that if you are a) having treatment or b) waiting for results it’s often difficult to obtain insurance. Not impossible…but there are only a few companies that would be willing to take the risk.

Between the forum and the phone call, I had a couple of companies to contact and I ended up getting a quote which was great.

3x days cover, for a single trip to Holland – £450. Woah! 1x year cover – the best part of £5,000. Double woah!

I took the risk and went armed solely with my European Health Insurance Card (EHIC) which entitles you to state healthcare in any EEA country. It will cover you for treatment that becomes necessary until your planned return to the UK. For the time being this card is still valid (post Brexit) but I think that’s due to change in 2021. Don’t quote me on that.

Back home, we immediately contacted the CNS team and explained what happened in Holland. They made an appointment with the neurologist. The neurology clinics at KCH are insane. They are SO busy and yet another example of how stretched the system is. Kudos to all those involved. Case in point, we were expecting to see neurologist Dr C~ but we ended up seeing a Dr F~ instead. We had met Dr F~ before. He was the lead member of the clinical trial team who I met before my operation. F~ or C~, you don’t get to become a consultant neuro oncologist unless you’re worth your salt.

Having explained the drama of Utrecht and discussed my recent past, Dr F~’s assessment (according the medical notes) was that “I had 2x simple partial seizures and the anticonvulsant medication has given him partial control of his seizures. He had a long day travelling to Holland and stayed up late on the night before he had the fit. The sleep deprivation may have been sufficient to precipitate the seizures”.

In short, in his opinion, tiredness was the likely cause.

The plan? “To withdraw Clobozam because it’s anti-seizure efficacy decreases with prolonged use. Therefore, I told Mr Hudd to continue with a 10mg reduction this Friday (29th March 2019)”.

As I’m writing this blog retrospectively, almost a year after this meeting, I can’t remember my take on being asked to reduce Clobozam. I know for a fact I would have trusted Dr F~’s opinion and as per the instructions, I dropped my intake from 20mg per day to 10mg…

…3x days later I was seizing on the floor at Ladywell Park suffering a tonic clonic seizure.

In hindsight, I wish I questioned the hastiness of a half dose drop in Clobozam. That said, I could also question why I went for a walk in the park by myself when my body was in a medical adjustment phase. There are some things you cannot control – that, I could have. This seizure happened 23x days after the 2x I experienced in Utrecht.

Since beginning chemotherapy at the start of 2019, walking had become part of my daily routine. It was nice to have a bit of ‘me’ time to be honest and that’s why I was in the park.

My hands were in my jean pockets when I realised I couldn’t feel my right hand. Trying not to panic, I sat on the nearest park bench and closed my eyes and concentrated on my breathing, trying not to panic. There is a mindful technique which teaches you to breathe innnnnn for 7x…….then outttttt for 11x………..innnnnn for 7x…….outttttt for 11x………..

Personally, I find it really hard to breathe out for 11x in any environment – try it…

During any panic attack, your airway widens during inhalation so air is easily pulled in. However, the airway narrows during exhalation so air cannot be exhaled from the lungs as quickly as normal/as quickly as you’d like.

I called my mum who was out shopping but not too far away. She was already in the car before I hung up but I was starting to become drowsy and realised I needed some more immediate help.

For such situations, Jo had made me a wallet friendly ‘in case of emergency’ homemade card to carry at all times. However, the first lady I approached…slightly staggering and murmuring, offering up a homemade card for her to read…walked past without looking and said ‘no thank you…’! I don’t blame her. That does make me chuckle looking back!

A second lady was approaching and I handed her the card which she looked at…looked back at me…looked at my lower arm twitching…and lead me back towards the bench. She was middle aged with brown hair and was carrying plenty of shopping bags. In my mind she looked like Raquel in the early days of Only Fools and Horses – she probably looks nothing like that but my memory of the event is a little hazy!

I saw my mum in the distance as I laid down on the grass. I was fitting by the time my mum reached me.

As I was coming around, however many minutes later, my mum and Raquel were together with me. They had been joined by a grey haired lady with a dog who had ‘sensed the danger’ apparently (the dog, not the lady) and was sniffing around at my feet (again, the dog not the lady). What a palaver.

We couldn’t thank Raquel enough. I’m often in the park and I look out for her every time but I’ve yet to see her. I did see the dog owner once. I waved and said hello – she had absolutely no idea who I was. No matter. I got to say thank you and that’s all that counts. For the record, thank you Raquel, whoever you are.

Unfortunately, the medical card Jo made me took a spin in the washing machine recently but here’s what’s left of it below. It listed all the medication I was on and a brief history of what I had been through since September 2018.

Medic Alert – Brain Tumour related Epilepsy

Speaking to Dr F~ via the nurses, the Clobozam dose was raised back to 10mg, twice per day and a MRI scan booked for later in the month.

Not to sound like a broken record but it was a continued case of 1x step forward (chemo tolerated well), 2x steps back (those damn seizures).

I have since upgraded my homemade medication card for an official one from the Epilepsy Action charity. I carry it in the back of my phone alongside a spare Clobozam pill (as below). It means I can’t take any decent pictures of people on my phone as instead of looking up at the lens, everyone is looking down to read the text…!

Let’s go on holiday…!

#16

Having thoroughly abused the privileges of living at Jo and Gemma’s house, I moved 5x minutes down the road to a house I co-own with my university pal Scott. It had been rented out for a while but when the opportunity came to move back, I jumped at it. It has rooms to cater for me, a parent/friend to stay (if things ever took a turn for the worse) and a smaller room to relax in that wasn’t the living room or my bedroom. It was affectionally known as ‘the office’.

My chemotherapy regime almost always included an afternoon rest and inevitable nap in the office. Alongside my new armchair, I dusted off an old DVD/TV combo and settled in. There is a huge selection of classic DVDs available to buy in Poundland FYI. You’ll never guess how much they cost…?!

Having missed the wedding in February (blog#15) due to psychological unease after the seizure during cycle 1, I was encouraged by completing the Temozolomide week of cycle 2 without any fuss.

I previously asked the CNS team whether it would be safe for me to fly (to Ireland for the wedding) and they said it was fine. I wondered if the pressure of an airplane cabin could cause issues but apparently not.

With that in mind, and trying not to get too consumed by the medical situation, I booked a weekend trip to Utrecht for early March with the family. Utrecht is a beautiful city, 30x minutes south of Amsterdam and easily accessible from London. We booked the Eurostar train there, stayed on a canal houseboat and opted for a flight home. Having previously purchased ‘Planes, trains and automobiles’ on DVD from Poundland (classic film), we were about to make our own version, ‘Planes, trains and houseboats’…

We had a great weekend and before you ask, it was not a CBD oil run (or anything stronger). I admit, I did have a few small wines on the Friday night, my first drop of alcohol in 6x months. It was a long first day all in all, starting early at London St Pancras and finishing quite late on the houseboat.

Up early (to take 8am pills) and out before everyone else on Saturday morning, I wandered around and found us somewhere to have breakfast. Two by two, the others arrived. In that time, I had 3x coffees (the cafe didn’t have decaff) which was another first. I had given up caffeine since the ectopic beats were flagged up in the pre-op assessments in September 2018. It was never something official from the doctors, it was just a suggestion that was made at the time.

We had breakfast and headed into Utrecht central for a lovely walk along the canals and a good look around the shops. This blog is not a travelogue and I dare say you’re wondering why I’m going into such detail about what we did and when. Unfortunately, that’s because at around 3pm on Saturday afternoon, I had a seizure. In fact, I had 2x seizures.

Rain had begun to fall and we went into a small local bar to take shelter. As I remember, I immediately felt a bit odd. There is an official symptom of epilepsy which is feeling an aura. It’s hard to explain. The dictionary description is ‘a feeling, experience, or movement that just seems different’ and I guess that’s what I experienced. I sat outside the bar, with a glass of water. The bar owner was BLATENTLY thinking ‘…pfffft another Brit who’s smoked too much strong weed…’ – I don’t blame him. I took a Clobozam pill to try and quell the seizure.

Beginning to lose my speech, Jo had been in the shop next door (a very high-end cookware store). As chance would have it, the brother of the man working in the shop has epilepsy so he was very accommodating. I laid in the recovery position on his shop floor as my right hand fingers twitched. I pointed at my hand as my family hovered over me. As previously, the tingles and twitches moved to my cheek and face. At this stage, my seizures go one way or the other. Today was a good day, the tingles relented and I started to feel a little less anxious.

I am guilty of trying to get up too soon after a seizure, believing I’m okay. My family kept me on the floor but after another 5 minutes I was communicating and was definitely back in the (show)room.

Utrecht is an amazing city as I said. The canals and cobbled walkways are beautiful. However! The pedestrianised nature of the city doesn’t lend itself to getting a taxi! The owner of the shop tried on the phone as Gemma tried Uber. I got up had a look at the items on sale. Who knew a domestic food mixer could cost €2500?! Not me.

Maybe it was the price tag but I suddenly felt the need to sit down again. I felt odd again. I didn’t feel right again. I laid down and put myself back in the recovery position. My family were very concerned now and asked about calling an ambulance. The hand jerks returned before the face twitches took over. Once again, the electric brain storm passed without a generalised seizure. I’m in danger of sounding quite blasé about these situations now but, believe me, they remain extremely distressing.

So many questions. How serious are back to back seizures? What was the trigger? Was it the alcohol from the night before? Was it the long travel day on Friday? Was it caused by excessive caffeine? Too much walking? The only answer we did now was it wasn’t caused by flying. I’m so glad we travelled to Holland on the train – I would have been fearful of getting on a plane forevermore if we had, irrelevant of CNS blessings.

I came around fully and we stood outside waiting (still) for our taxi. We headed back to the boat, ordered pizza and had an early night. That was a rough afternoon.

I felt fine in the morning but was nervous about the evening flight ahead. My head and my brain were seemingly weak and vulnerable. Despite our concerns, we flew back to London Gatwick without issue and headed back to Catford. There’s no place like home…

Cycle 1. The early days…

#15

If you remember from blog #13, my double dose of (potentially addictive) Clobozam was seen as a temporary measure. In preparation for the ween, I started taking another anti-seizure drug in January called Lamotrogine. I was now on 1500mg Keppra, 10mg Clobozam and 50mg Lamotrogine (all twice per day). Quite a concoction!

Before my chemotherapy began, I dropped my Clobozam intake to 10mg ONCE a day. As most of my seizures had been at night, we ditched the morning dose. Fingers crossed!

To see if there were any patterns in side effects during my chemotherapy cycles, I created a spreadsheet logging how much sleep I had the night before, how many steps I did on the day, scoring headaches and nausea out of 10 and a column for general thoughts and feelings.

Homemade spreadsheet…soon to be rolled out across the NHS(!)
January 2019

On Monday 21st January 2019 (day 1 of cycle 1), I had 7h30 sleep the night before, walked a total of 3.3km, had a 4/10 headache in the evening and scored my overall tiredness and nausea at 6/10 (no sickness though). With stats like these, I’m a real hit at parties…

Cytotoxic drugs are ‘toxic to cells’ and Temozolomide is exactly that. They can affect your digestive system which stretches from where it goes in, to where it comes out. Side effects include mouth sores, vomiting, diarrhea, constipation, etc. It also affects your nervous system causing anxiety, restlessness, and dizziness. In the first week of my chemo I did feel lightheaded at times and this prompted a new column in the spreadsheet, dizziness.

2x weeks passed, 1x taking Temozolomide and 1x week of rest and recovery. Clobozam had been reduced to 1x per day. Headaches didn’t peak above 7/10, I still hadn’t been sick – my biggest concern was constipation.

That was until the night of 3rd February, 14x days into cycle 1. Taking it easy (as I was and had been), I was at home on Sunday night and had some peculiar sensations and became quite breathless. It was the start of a seizure. 77x days since my last. This happened just before I was due to take my PM anti-seizure pills. Laying on the bed, eyes closed, my right hand started to jerk and it was definitely too late to take the pills now – it would be dangerous to have 3x half swallowed pills in my gullet.

I was in the recovery position, as the sensations moved from my arm to my face. I was awake and aware of what was happening but was trying to concentrate on my breathing as my upper lip flexed. The tingles moved back to my arm. Then they…just stopped?! The seizure did not materialise into a generalised one, it remained a focal aware seizure (with motor symptoms).

Things had been going great on the seizure front and it was nice to be able to concentrate solely on chemotherapy. Suddenly we were back in the worrisome zone of seizures.

I consulted my chart. There were zero parallels between the 2x weeks. The CNS nurses booked me in for another MRI scan, my homemade tick box log deemed insufficient.

I was meant to be going to an amazing wedding in Ireland the week after but the uncertainty, insecurity and paranoia of the seizure situation made it impossible to go. I hate the idea of missing out because of fear but an anxious imagination is a powerful one.

The Clobozam was reintroduced as a twice daily medication and Lamotrogine increased to 100mg (up from 50mg) until further notice.

Encouragingly, 70% of people with epilepsy have their seizures completely controlled by anti-epileptic drugs – we just need to find my happy medium.