That was unexpected…

#34

As part of blog #31 I mentioned a request for my medical notes from Lewisham Hospital to try and establish why I was unconscious for nearly 7x hours after my seizure in September.

These notes did eventually appear and made for quite a sobering read. 

Emergency Department Summary
September 2021

As a reminder, it was my first seizure in over 2.5 years whilst waiting at a bus stop. I was helped by a couple called Aaron and Faye who decided to call an ambulance when my condition deteriorated. I have next to no memory of what happened between then and the time I arrived in the hospital ward at 2100-ish (7x hours after being at the bus stop). 

I am prescribed a drug called Clobazam which I take twice daily. I also carry one in my wallet in case I feel seizure bound. Clobazam is classed as a benzodiazepine which are drugs that aim to lower brain activity. They are prescribed to treat conditions such as insomnia and anxiety as well as seizures. I popped my spare pill at the bus stop but the generalised seizure still took place. 

Copy and pasting from blog #31:

“my parents had arrived before the seizure kicked in but I don’t remember them being there. Aaron had cushioned my head with his coat which is all you can do until a seizure stops. When it did, they put me in the recovery position and a mixture of sick and saliva spilled out of my mouth. My dad said my eyes were open but they were totally vacant. I was blue-lighted to the emergency department at Lewisham Hospital”

The paramedics were in charge now. 

The report said ‘I had some shaking of the upper limbs but mainly facial rictus with non – tracking eyes’. Facial rictus is a sustained spasm of the facial muscles. Ironically it appears to produce grinning in a situation that is far from funny!

There is something called the Glasgow Coma Scale which is used to measure a person’s level of consciousness after a brain injury. It assesses their ability to perform eye movements, speak and move their body. A person’s GCS score can range from 3 (completely unresponsive) to 15 (responsive). My score was 3 and according to the GCS Wikipedia page, patients with a score of 3-8 are usually considered to be in a coma. I was making ‘no respiratory effort’. As I said that the start of this blog, this report makes for quite a sobering read.

On average an adult takes between 12x and 18x breaths per minute. I was taking 4x and being aided in the ambulance by a BVM resus system AKA a bag valve mask which is one of those rugby ball shaped bags that that is pumped to aid breathing. 

I was given another benzodiazepine drug called diazepam (previously valium) in the ambulance. As I was completely unresponsive, they gave this p.r. which stands for per rectum 😉 I assume this drug was to further my state of anaesthesia but I’m not 100% sure to be honest. I’ll be sure ask in the future.

The ambulance crew dialled through to Lewisham Hospital with a 2222 call. 2222 is used when an immediate medical response is needed on arrival because of actual or imminent cardiorespiratory arrest.

A RSI (rapid sequence intubation) was prepped which is a procedure that’s used when a patient cannot breathe on their own. In short, it’s a ventilator via a tube down the throat and into the windpipe. As they attempted to put the tube in place I gagged and I was sick. The intubation was no longer required. 

I’ve read this report many times and it still shocks and surprises me.

In hospital resus, I was on a drip which was a combination of drugs to make me feel better. One of these was Lorazepam (another benzodiazepine) – it’s no wonder I can’t remember the 7x hours between passing out and arriving in the ward at Lewisham.  

In the ward, my GCS score increased to 9/15 initially and within a couple of hours it shot up to 13/15. However, I suffering with receptive aphasia. I could speak and use long sentences but they might not make sense. The annoying part is that I probably didn’t realise what I was saying was wrong.

As per blog #31 I spent 2x nights in hospital before being discharged. As per blog #32 the MRI showed no obvious reason why the seizure occurred and it was put down to exertion. 

3x weeks after this seizure, I ran the London marathon (as per blog #33). Had I received this report prior to marathon day, would I have participated? Hmm, probably not – but ignorance is bliss and I’m so glad I got to run it and eventually raise over £9,000 (with gift aid) WOW WOW WOW! Thank you to all who contributed.

Ava says thank you too…
September 2021

Jx

Ps. interesting fact of the day(!) The GCS Glasgow Coma Scale is so called because it was invented by professors of neurosurgery at the University of Glasgow in 1974. Hopefully that question comes up in your local pub quiz soon!

Last call for the marathon…

#33

Just 13x hours after confirming my entry, I was leaving my house for the start line! Don’t get me wrong, I had prepped my kit bag ahead of decision making so it wasn’t as much of a scramble as you’re probably thinking.

My friend Scott, who I ran the virtual marathon with in 2020, was also running on behalf of Brain Research UK. His start time was way ahead of mine. He sent me a picture almost ready to go whilst I was still having breakfast at home!

08.14am
October 2021

Everything crossed, our plan was to meet in a pub afterwards with everyone that came and supported us. Unfortunately my ETA was about 3x hours after his…! Assuming I finished of course.

Red zone, wave 11 approaching the start line…!
October 2021

I was given a list of spots along the route where I should expect to see people I knew. Before the halfway mark, I had seen people and stopped 6x times! That’s unheard of usually. Slow and steady is definitely the way forward if you want to see your buddies and drink it all in. 

The magificent London Marathon
October 2021

The halfway point is approximately where you cross the Thames on Tower Bridge. It’s an iconic part of the London Marathon. All the charities have spots on the bridge with horns and clappers, there are people being interviewed for TV, runners FaceTime-ing loved ones – it’s a thrilling part of the course and it’s easy to get over excited thinking you’ve nailed 13x miles already.

After the bridge, you turn right and run towards Canary Wharf. Suddenly the truth hits home. On the other side of the road are the people who have already completed the Docklands stretch and are heading towards mile 23. Guess who I saw on that side? Scott! I shouted and screamed his name “SCOOOOOOOOOOOOOOTTT!” but he didn’t hear me unfortunately. He was gliding along and as a result, I accepted my pub arrival time was more likely 4x hours after his…!

I continued. I felt okay. My legs were standing up to the task as I stopped and chatted with friends and family who were dashing around London and overtaking one another to see me. To be honest, I think their aim was as much to judge my condition. I am guilty of being a bit head strong sometimes and given their fears going into the day, I was more than happy to let them carry out their subtle assessments.

By mile 18, my legs were aching but I had no brain related concerns. I arrived at the point where I saw Scott 2x hours ago (knowing he was probably finished). The aches were starting to become strains and I started to walk now and then. 

Slow and steady James. Slow and steady…

The problem with walking and looking tired is the crowd turn their well wishes and support to you which does urge you start running again but once my straining legs began to cramp, that wasn’t easy to do.

The heavens opened temporarily as I struggled my way through the last 3 or 4 miles. Once you pass through the tunnel at Blackfriars, the crowd is wild and it’s such an amazing atmosphere. The sun came out and I felt a new lease of life. A shout of ‘go on James, keep your head up and enjoy it’ really struck a chord. Thank you to that man – whoever you were!

Soon I could see Buckingham Palace which is the final turn before the finish line. I did it. I completed the marathon. I completed the marathon with a malignant brain tumour. I completed the marathon in the midst of chemotherapy. I was ecstatic and everyone associated was so relieved.

Macmillan provide quite a lavish post marathon gathering where they provide food and drink, massages and a very hospitable welcome with pompoms and personalised cheering!

Since the marathon, additional contributions to my Macmillan fundraising page total £6,750.00 (£8,073.25 including gift aid). This is an unbelievable amount and as somebody who personally benefits from Macmillan’s support, I would like thank everyone who donated money. Thank you. 

Jx

If you’re wondering, I got to the pub about 4x hours after Scott as predicted. He met me at the station.

Well done Scotty…!
October 2021

He smashed it in 3h37mins. I finished in 5h31mins. Together we celebrated with our friends and families until 23h00mins – AKA closing time…! 

More questions, less answers…

#32

My quarterly MRI scan was brought forward 1x week because of this unexpected seizure (arranged by the CNS – helpful and caring as ever).

I was taking things very easy. I had a nasty reminder of that feeling and it’s horrible. The process is scary but I feel for those involved or standing by as it must look awful. Approximately 1 in every 100 people have epilepsy in UK – I haven’t seen anyone having a generalised seizure before. I wonder if many people have?

The MRI took place and a telephone consultation was scheduled for 4x days later. It was a standard MRI (including contrast). My work at King’s was done.

Unfortunately, work for the CNS never ends and having attended the MDT meeting (multi discipline team), they are charged with prepping and informing patients what their immediate future looks like.

J~ phoned and there was synchronised joy when she said the scan was ‘stable’ AKA there is no change in the images from June. There was no increase in the tumour size which was a welcome relief. That said, it did leave us with no obvious answer to what caused the seizure.

My previous generalised seizure was 2.5x years ago. There has been no enhancement in the tumour (since January when I started PCV chemotherapy) so it remained ambiguous.

Together we concluded that exertion was likely to blame. I was taking cytotoxic pills for chemotherapy, I did a 6x mile run that morning, I had 3x coffees (all with caffeine which I try to avoid). Add those to the general fatigue and tiredness of chemo and it’s quite a cocktail for the brain and body to consume.

I am still waiting for a copy of my medical notes from Lewisham hospital. I want to find out more information about the ambulance ride and whether they gave me any sedatives (explaining my 6-7 hours lack of conscious). That’s quite a big concern for me because anytime previously, I have been (sluggishly) awake within 1x hour.

Amongst all my family and most of my friends, there was a common expectation this saga would end my plans to run the marathon (exactly 3x weeks after the seizure). I still hadn’t ruled it out personally.

Based on the results of the MRI, both my neurologist and my oncologist said they couldn’t objectively say ‘this person should not run a marathon’ which left the ball in my court.

Of course, Dr~ C and Dr~ S had reservations and both emphasised the importance of running slow and steady and if I had the smallest twinge, any odd feelings or the tiniest of unusual sensations I needed to stop immediately. 

In the 3x weeks between the seizure and the marathon, I only ran once (5km). I didn’t feel particularly fit and I would be relying on muscle memory. Coupled with the valid concerns from my nearest and dearest, it was a tough decision whether to run or pull out.

I said from the start this would be my last marathon (4th) and I had no interest in deferring. I had already raised over £5,000 for Macmillan (by running the virtual marathon in Brighton in 2020 – blog #27) and completed 2x half marathons in summer 2021. There was no shame in pulling out.

Running hard(!) at the London Vitality 1/2…
August 2021

I was desperate to do this marathon in the face of chemotherapy and a malignant brain tumour. I also needed to be wary of the scale of the task in the face of chemotherapy and a malignant brain tumour.

Although the tumour and associated procedures/medication limited my ability to work and attend some social events, choosing not to run the marathon would be the first time I truly succumb to having a brain tumour in my opinion.

I resented that fact and much to the surprise (and horror) of many, at 8pm the night before the event, I committed. I would keep it slow and steady as advised. I would run and walk as required. I would stop and socialise with my family, friends and strangers who line the streets and make it such a special day.

I spoke about the London Marathon in blog #18 and as I said then, if you could bottle and share the human spirit shown on that day, we would be in a fantastic place together.

I’ll drink to that – make mine a Lucozade…! 

Marathon Expo with Jo – count me in…!
September 2021

Jx

Re: the MRI. There was actually an extra piece of encouraging news. The area of brain highlighted by the contrast had shrunk – albeit slightly. This means the area sucking up blood and likely to increase the tumour size in the future was smaller than it was before. It’s officially called the ‘enhancing component’. This felt like great news but from a medical perspective the scan would still only be referred to as ‘stable’, nothing more.

Blip…

#31

Sunday 12th September. Day #7 of cycle #5.

It was a beautiful and crisp morning, ideal for a run. I was finding my groove in preparation for the marathon having previously completed a couple of half marathons (13x miles) and an 18x mile run. So I popped the trainers on and did 6x miles. Short in comparison to previous runs. A faster pace in comparison in previous runs.

My mum had looked after Ava the night before and invited me to her house for a roast dinner with all the trimmings followed by a nice walk. Yes please!

I declined her offer of a lift in favour of a bus ride and a podcast. A perfect Sunday!

Arriving at the bus stop, I tried to get my phone out but kept missing my pocket. That’s what it felt like anyway.

Unfortunately I wasn’t missing, I realised my right hand was fully numb – my first sign of an imminent seizure.

My last generalised seizure was in April 2019 so this came as a real shock. I take my medication religiously. There were no other vital signs. 

I sat on a bench and closed my eyes, took deep breaths but the numbness progressed to pins and needles. I still carry a homemade card which explains my brain tumour epilepsy (including emergency contacts) and a Clobazam pill which aims to calm the brain activity. I was trying to get both out of my pocket but couldn’t do it. 

I saw a couple on the corner of the street and I called out for help (Faye and Aaron). They came over immediately as my hand started jerking and the pins and needles intensified.

My speech was slurring but I managed to tell them I was going to my mum’s house and her mobile number was on the card in my pocket. From that point my memory becomes very hazy. I remember sitting on the floor against the bus stop. I remember Faye with her arm around me reassuringly. I remember hearing Aaron say ‘I think we should call an ambulance’ and I remember the moment I started contorting and groaning before passing out.

Apparently, my parents had arrived before the seizure kicked in but I don’t remember them being there. Aaron had cushioned my head with his coat which is all you can do until a seizure stops. When it did, they put me in the recovery position and a mixture of sick and saliva spilled out of my mouth. My dad said my eyes were open but they were totally vacant. I was blue-lighted to the emergency department at Lewisham Hospital.

I was so lucky to find Aaron and Faye. Comically, they were only on that corner because their dog, Olive, had decided to take a s*** in the middle of the road!

Unfortunately, Aaron has a member of his family who has a brain tumour. The site and type of tumour is very different to mine but he is familiar with seizures and what to do. Faye was such a comfort and I can’t thank Olive enough for having that poo…! 

I don’t really remember anything about the next 6-7 hours. I was given a CT scan (apparently) which I don’t remember. My mum was with me (apparently) which I don’t remember.

Eventually I started stirring but was extremely groggy and confused. I was taken to a ward and remember looking at the clock and it was 9pm-ish. I got to the bus stop around 2pm. Never have I had such memory loss/lack of consciousness with any previous seizure and that was (and still is) quite worrying.

Once I was settled, a nurse phoned my mum and she was allowed to come into the ward. It was so nice to see her. My speech and general coherence were sketchy. My mum told me what happened. Captivating? Yes. Scary? Very.  

In the morning, I felt fine but my speech was still stuttering and certain word finding was difficult. The doctors paid a visit. They told me the CT scan showed no obvious reason why this seizure took place. Therefore a MRI was going to be arranged to dig a little deeper. 

Jo emailed the neuro-oncology CNS team on Sunday night and before 10am on Monday morning, they had replied. That team are absolutely amazing given their nurse to patient ratio. I am so grateful (and lucky). 

They told me to ditch the chemotherapy for the remainder of cycle #5 and they would chase the MRI from their side. For the time being I needed to sit tight in Lewisham. My speech and general well-being were getting better and after 2x nights, the doctors decided I was well enough to leave hospital and wait for my MRI at either Kings or Guys.

Lewisham Hospital
September 2021

I have requested a copy of my medical notes from Lewisham to find out more information about the ambulance ride. I’m intrigued if the paramedics gave some form of sedative? It would be extremely comforting to have a potential reason why I was out for 6-7 hours. It’s a bit worrying if not.

So there you go…don’t mix chemotherapy with running! Only joking – there is no definite proof this was the cause.

However, if you’re offered a lift somewhere and choose the bus instead, you’re a FOOL…!  

Jx

Aaron, Faye and Olive live quite close to me and I have bumped into them 3x times within a week. They have been genuinely emotionally moments as I am so grateful to them. Right time, right place, right people. Was it fate? Or was it just Olive’s bowel movements? You decide…! 

With Aaron – legend!
September 2021

Pee Cee Vee…

#30

Everyone has experienced that feeling of being nervous but forgetting exactly what for. That Sunday night feeling. That’s how I would describe the run up to starting PCV treatment. I wasn’t knowingly worried but there was a definite fear of the unknown.

I bought plenty of protein and energy rich foods although the key advice was hydration and drinking plenty of water.

A quick reminder: PCV is given in 42x day cycles. On day #1, I went to Guys Cancer Centre to take 2x drugs (Lomustine and Vincristine) before taking drug #3 (Procarbazine) back at home. Days 2 – 10 are Procarbazine solely, the dose based on your BMI and blood test results. Days 11 – 42 are rest, recuperation and cell growth (both good and bad ones) before we start again.

Jo came with me for cycle #1. I checked in and we took our seats in reception. Looking around I noticed a big difference in the visual health of patients compared to any other area I had been in before. Patients looked tired and quite poorly. +1s had their head in a newspaper or a book, hardened to the solemn feel of floor C. 

Guys Cancer Centre has 3x chemotherapy suites (A, B and C) each with 12x plush recliner chairs for patients. I was assigned to suite A today. Apparently, there is no significance whether you’re sent to A, B or C…but paranoia causes you to question otherwise. 

A nurse invited us in. She explained that the first cycle is taken (if possible) in a private room. The same nurse would accompany me throughout this first cycle in case of any issues or allergic reactions. Walking through the suite, there was a cacophony of beeps and bleeps. There was a nurse’s station, busy with people in different coloured scrubs. I felt quite nervous.

The nurse felt my arm for a suitable vein for the canula. I offered the standard blood test position (fold on my arm) but she needed a bigger and deeper vein and opted for an area above my wrist. This is the hairiest part of my arm so I wasn’t looking forward to peeling (ripping) off the tape to secure it later!

I was given some anti-sickness pills and steroids before a saline flush. The nurse hung the Vincristine on the drip stand. It was a small bag of clear solution. On the way in, I saw people with big silver bags and there was mine, no bigger than a Capri Sun which explained why my dose would only take 15x minutes to drain.

Other people stay in the ward for hours, taking multiple drugs. It’s a big, bright area and although you have your space, there isn’t that much privacy. I wanted to take a couple of pictures to help explain but it didn’t feel right. Here’s one of me though…

Wired up and ready to go…
March 2021

The nurse opened the drip and I felt the Vincristine flow into my hand and up my arm. It was nothing more than a cold sensation but there was a knowing glance between myself and Jo. Bombs away! 

A junior nurse joined us who’s interest was oncology. It takes a certain person to work on a cancer ward. We chatted and before I knew it, the Capri Sun was empty. It wasn’t as gut wrenching as I feared but I was probably high on adrenalin.   

Lomustine was next. That came in the shape of 4x blue pills – not to be confused with other popular blue pills. They are given in a different part of the hospital…!

Lomustine (taken by itself) was my preferred option for this batch of chemotherapy. I was converted to PCV on the advice of Dr S~. 2x down, 1x to go – so far, so good.

The final drug, Procarbazine, is given to you to take at home. I was also given anti-sickness pills and steroids, a polite reminder that the gut wrenching was probably still to come. Procarbazine is the element of PCV that a lot of people have a reaction to (allergic or otherwise) so I was extremely happy on the following morning when I woke up trouble free. I did stir in the night, suddenly realising I could/should be feeling sick but that wasn’t the case which was great. 

I’m happy to report that all 10x days of Procarbazine passed without any sickness. The makeshift sick bowl from the kitchen unused. The steroids disrupted my sleep and I did suffer some constipation but they are pretty minor side effects in the big scheme.

I continue to use The Brain Tumour charity’s BRIAN app to log how I feel physically and mentally. There are sliding tabs for thinking ability, tiredness, your memory as well as options for how your feeling emotionally. It’s good to use on chemotherapy, it shows potential and recurring peaks and throughs of a cycle. For example, don’t call me on days #5/6, I seem to be fed-up and annoyed on these days. You have been warned!  

Let’s fast forward…

I’m sitting here today, 27x days into my PCV cycle #5. I appreciate that’s quite a jump in time from day #1 on 5th March to 2nd October (today) and apart from 1x blip, I’m happy to report I’ve only had minor side effects from P, C and V. In fact, I started to question whether it was actually working so I was delighted to hear the results of the MRI scan in June which showed the white dots/spots (unveiled in February) had now disappeared. 

R – white shading around the cavity (March 2021)
L – no white shading (June 2021)

I have suffered with decreasing levels of platelets which, as of cycle #4, reduced my intake of Procarbazine by 25%. My most recent blood test showed low red blood cells as well as low platelets. This could result in needing a blood transfusion or delay of cycle #6.

The 10x days of treatment per cycle are hard to define. Official paperwork or answers in forums about side effects almost always differ. Personally, I compare it to having a hangover or an alcohol or chemical comedown and what 1x person needs or craves to feel better is often different to somebody else. 

I eat my way out of a hangover. I crave fast food. Forget PCV, I want KFC! I know for a fact there are other people who can’t bear the thought of eating with a hangover. It turns their stomach. It settles mine.

So, fueled by bargain buckets I’ve remained feeling okay, both physically and mentally. I’ve suffered with some tiredness and the more Procarbazine I take, the more I wince, but I can’t complain.

I’ve played by the rules on treatment days but outside of those I’ve socialised, exercised and even been to work! That may not be the case in the future, not all 3x simultaneously anyway.

Talking of exercise, I still plan to run the London Marathon. I have been in 2x minds since beginning PCV but after the positive scan in June and the blessing(-ish) of both my neurologist and oncologist, I have continued basic running (very different to marathon training) and will hopefully be on the start line on Sunday October 3rd.

That was the plan. However! Remember that ‘blip’ I referred to above? Well, blog #31 incoming…

Jx

Ava is getting on great. We’ve had summer trips to Norfolk, Camber Sands and a visit to see her sister Winnie in Shoreham. Here they are together. Awww!

Ava and Winnie
August 2021

Here are the nominees…

#29

Option 1, watch and wait.

Exactly what it says on the tin. The wait is determined by your current MRI intervals (12x weeks) and you wait for an intermediate scan halfway through. The white shading could be a red herring caused by trauma of some description and if the shading remained on a second scan, action would be required. The likelihood of a red herring? Doubtful. Although blog #18 showed it can happen https://anaplasticastrocytoma.home.blog/2020/04/04/fake-news/

Option 2, Lomustine chemotherapy.

Like Temozolomide (my chemo of choice in 2019), Lomustine comes in pill form and is taken in the comfort of your own home. It’s 1x dose on the first day of a 42x day cycle. I would have 6x cycles (252x days). Lomustine is used to treat a variety of cancers, it is not brain tumour specific. It works by sticking to a cancer cell’s DNA strands which stops them from growing and dividing into 2 new cells. 

Option 3, PCV chemotherapy. 

PCV is a combination of 3x different drugs used to target brain tumours. P stands for Procarbazine, C represents Lomustine (as per option 2) and the V is short for Vincristine. Again, a cycle would last for 42x days and I would have 6x of them. 

V~ is given intravenously so the first day of each cycle would be spent at Guys Cancer Centre. I would also take the single dose of C~ (Lomustine) in hospital. Procarbazine (P~) also comes in pill form and is taken at home for the first 10x days of a cycle.

Lomustine isn’t refererred to as L~ because it’s original brand name was CCNU, hence C~. In case you were wondering…(!)

Option 4, a clinical trial.

Clinicals trials are usually seen as a last resort in a person’s treatment. They give a glimmer of hope to those who have exhausted all the other options and although that is often the case, it isn’t exclusively true. Many trials focus on newly diagnosed patients and those in good health who are willing (and perceived able) to take one.

New drugs are subject to years of development (known as phases) to refine their effectiveness and prove their safety to a growing number of people at each stage. 

Temozolomide was approved for use in the EU in 1999. I don’t know the exact timeline of TMZ’s phases but the professor credited with it’s creation (Malcolm Stevens) worked in the lab for 7x years. 

I was offered a chance to join the S.T.E.L.L.A.R. clinical trial which is currently at phase III. At phase IV, and subject to approvement, drugs can be made available to the public.

The S.T.E.L.L.A.R. project began in 2016 and stands for something really long (29x words). It’s fair to say the later the phase you join a clinical trial, the better.

This is a worldwide trial headed by professors in California in conjunction with Guy’s neuro oncology team and other research centres across Europe.

It is a mix of 2x drugs. Lomustine (again) and Eflornithine. The back story of Eflornithine (according to Wikipedia) is ‘a medication used in Africa to treat excessive hair growth on the face in women’ which seems pretty random?! But…

A facial hair follicle is made up of protein cells. Blood feeds the root which creates more cells and makes hair grow. Eflornithine inhibits this particular cell growth so could it inhibit the growth of cancer cells?

Being at phase III, there must be growing confidence in the combination but as with all trials, there’s a chance of getting a placebo. In this study, that was a 50% chance (Lomustine only, no Eflornithine).

I would be able to remove myself from the trial at any point and pick up on mainstream chemotherapies if I wanted. It also gave me the chance to give something back to the system.

However, there would be unavoidable negatives and risks. Beyond the 50% chance of being on the placebo, this treatment would last for 2x full years (712x days). On top of that, common side effects are seizures and hearing loss (not ideal for a sound engineer with epilepsy). My diet would be severely restricted, there were potential fertility implications and many other mediocre downsides.

These were the 4x options laid out by Dr S~ in February. My immediate ranking (from most to least desirable) was Lomustine only, clinical trial, PCV, watch and watch. Time to discuss with the family and do a bit more research before a visit to see Dr S~ later in the month. 

Options 2, 3 and 4…

Opting for Lomustine seemed the most logical and familiar option, taking pills in the comfort of your own home. In my mind, it was a gentle step forward versus the harshness of intravenous PCV chemotherapy. There was a definite draw towards the trial with a degree of excitement. As for watching and waiting, it would only delay the inevitable in my opinion. 

I hadn’t been to Guy’s Cancer Centre since December 2019 and since my last visit, COVID had struck and the whole place seemed so different.

There were no patient +1s (or very limited), the Macmillan Dimbleby Cancer Care area was closed, there were no alternative therapies taking place, the physical rehabilitation centre and gym were closed. There was an eerie silence to the place.

Despite the countless news reports and pictures I had seen of frontline NHS workers, it was still a surprise to see Dr S~ in full PPE. I didn’t recognise her…! 

I went into the consultation thinking Lomustine was the way forward so I was taken back when she openly delivered her opinion:

PCV.

I didn’t see that coming…

Her view was based on my current fitness and apparent health. She suggested I take the option deemed harshest whilst the going is good. Hit it for 6x, don’t just tickle it. 

Lomustine is the main component drug in PCV treatment and Dr S~ outlined that if I didn’t get on with P or V or the combination, I could drop down to taking Lomustine only. My neatly stacked pile of papers had been tossed in the air!

I used The Brain Tumour Charity’s forums to research PCV. I started a thread and asked about people’s experiences on the treatment. Of the first 12x replies I received, only 4x people completed all 6x cycles. 

The thought of PCV is daunting. Taking toxic drugs intravenously, sat in a big chair being hooked up to a drip is what chemotherapy and cancer treatment looks like in my opinion.

I asked if taking Temozolomide again was an option. The answer was no because different chemotherapy drugs attack cells in different ways. In simple terms, TMZ bashed them on the head. PCV was going to take them out from the ankles. 

I left the hospital without making a final decision but I have faith in Dr S~ and soon accepted that PCV was the way forward.

There were only 2x weeks remaining before the possible ‘watch and wait’ scan date (option 1). Together we laid out a plan…

I would have the ‘watch and wait’ MRI (just in case). Schedule a consultation for the same week and book myself in for PCV chemotherapy the following week (assuming it was required). A huge part of me wanted to participate in the trial but I needed to do what was right for me (considering all aspects) and that was PCV. 

In early March I had the MRI scan and the white dots were still visible (possibly a bit bigger) and that confirmed action was required in the names of Procarbazine, Lomustine and Vincristine. 

Roll on Monday 15th…

Jx

A LOT of text in this blog so here are few random lockdown photos to end with!

January/February/March 2021

894x days post surgery …

#28

My COVID Christmas 2020 and NYE were spent with my housemate Scott and my girlfriend Rebekah. Our ‘bubble’ and the bubbles made it brilliant fun. Jo and Gemma made a distanced appearance too. Perfect!

My latest MRI scan was scheduled for 26th January 2021. In amongst the daily COVID updates, there was a lot of chat about the back log in all NHS hospital treatments.

Despite this, the CNS continue to encourage us patients to report any oddities.

In early December, I contacted them about a persistent headache centered around my surgery scar and the back of my neck.

Later that month, I got a feeling I hadn’t experienced since April 2019 – the impending doom of a seizure. I couldn’t focus my right eye. If I closed my eyes, they felt like they were moving at a 1,000,000x mph. I had pins and needles in both arms and legs.

I sat and clutched 1x of the pills I have for seizure control (Clobazam). Should I take it? Or will I be okay? Is it already too late? Can I manage without it?

I didn’t take the pill.

I started to feel more relaxed and eventually all was well. Was it a mild seizure? Was it a panic attack?

Whatever the cause, I sent another email to update the CNS.

Just before Christmas, I got that initial aura once again. I was in a different social situation so I took the Clobazam this time and the symptoms didn’t amount to anything. Was that because I took the pill? Would I have been fine without it? It’s a guessing game but I sent another email. 

2020 had been a year of stable scans but when the hospital called to say my January 2021 scan had been cancelled, I was gutted given the episodes above.

You can get a private MRI scan (without referral) for about £350. A price worth paying but when you leave Harley Street with your USB stick, how do you get it into the NHS system and in front of your own oncologist/neurologist to review? I can’t imagine it being straightforward.

The current COVID crisis is unrelenting. My CNS team worked at 30% capacity during the height of the pandemic but as a result of my emails, they made sure my MRI was reinstated.

My emails were read, they were logged so if you’re reading this (in a similar situation to mine) do not hesitate in registering your symptoms – maintain that dialogue.

The phone consultation to discuss the scan results was 2x weeks later and sure enough, the oddities I endured in December were backed by some new white shading in/around the tumour cavity.

The comparison pictures below show very subtle differences but in GIII tumour terms they are significant.

Oct 2020 vs Jan 2021

Was I surprised? Yes and no.

No – because a GIII tumour will (in almost all cases) recur at some point, it’s only a matter of time. I had 3x moments worthy of emails to the CNS. A coincidence? Probably not.

Yes – because I had no further symptoms between Christmas and this late January scan. I was exercising, being run ragged by a whippet, socialising (as much as you could during lockdown) and working. I was leading a very normal life without any thought or hesitation.

A frustrating blow but as I’ve said before, so long as you have options there is always hope. When I spoke to my oncologist (Dr S~) in mid-February, she reinforced that idea with 4x possible options:

  1. watch and wait
  2. Lomustine chemotherapy
  3. PCV chemotherapy
  4. a clinical trial

Up until this point, I had always been told what would happen next. This time, it was my choice…

Jx

Fact: the neuro-oncology department at Kings perform nearly 600x lifesaving (or life prolonging) operations per year. That’s almost 2x people every single day in one single hospital.

The M-RI-athon…

#27

I started this blog entry back in NOVEMBER 2020…! Sorry. I’ll keep it brief.

November was post the virtual London Marathon…post my 40th birthday…post my October MRI scan and the resulting consultation with the neurologist.

A lot has happened but I know you’re all thinking…how’s Ava?!

The answer is awesome and cute and fun and mischievous – the grandchild of the family for sure.

Anyway. Onto the next most serious subject – the marathon…!

Do you remember that weekend in early October, when the rain fell permanently for 48x hours and the wind blew all day, every day? Well…that was the weekend we ran 26.2 miles on the blustery seafront of Brighton.

It was, quite frankly, horrific.

Need I say more…

I was running alongside my buddy Scott who was running for Brain Research UK and I was heartened by the fact he was equally taken back (literally) by the conditions!

This was literally 5x miles in…absolutely soaked!

At least we were running and keeping ‘warm’. I cannot thank the people who came to cheers us along in the cold and wet, springing up and surprising us along the route. Thank you to my mum and dad, Brenda and Patrick, Jo, Gemma, Marina, Mark and the boys, Sara, JJ and Carly and Bobbi plus Brett, Linsey, Eva and Isla. Couldn’t have done it without you – especially Scott. I really struggled with the last few miles but he got me through it. I do not like battle language generally but this was a big ‘f*** you’ cancer!

Thank you for all the generous donations too. We raised over £5,000 for Macmillan which I feel extremely proud about. To everyone who donated, thank you. 

We had a very gluttonous meal that night and I was treated to the best cake EVER on the eve of my 40th birthday. Thank you all so much to everyone involved!

Complete with mixing desk detail…!

Last but not least, leaves the immaterial matter of the MRI and consultation re: my brain tumour(!)

The MRI was standard procedure, one scan to show the current size of the tumour and one (with prefusion) to show how much blood was being used by different (potentially cancerous) parts of the brain. 

The radiographers were accommodating as always – they even let me take a selfie!

All aboard…!

A week later, I had my telephone consultation. I was expecting to chat to Dr C~ but it was a different voice on the phone this time. The conversation started with discussions about my current medication and any seizure updates – #unsettling.

Anyone having a medical diagnosis conversation wants to hear ‘hi, your scans look great…’ from the outset so it was a bit unnerving to start with 10x minutes of questions about my medication and current health status.

The Dr eventually dropped in ‘your scan images haven’t changed’ which were the words I wanted to hear.

“Hang on, did you just say the MRI scan results haven’t changed AKA were stable?!”

“Yes…”

Such a relief. You could’ve told me earlier…! Anyway.

So there was no change which (I’ve always said) is as good as a win. This meant my next scheduled scan would be in 2021 and at the time, that felt like a lifetime away. Winner!

Jx

As stated above, I started writing this blog post 4x months ago in November 2020. 4x months later in February 2021 (today) I am finally finishing it which coincides with my next/my latest MRI scan. Time to get back to medical business…

40 v 26.2…

#26

Good morning, afternoon, evening – it’s been a while, sorry. 

I’m happy to report my 2x month absence is because nothing has really happened! No seizures, nothing reported to the CNS team so everything seems well on that front which is good.

My last MRI was in May and the next one is scheduled for early October and more specifically on my 40th birthday, Monday 5th. Parrrrrrty…!

That could be considered unfortunate but I think there is a certain irony that the venue accredited with my most life changing event should also host such a landmark birthday! I’d happily spend my 50th there given the chance. We live in hope.

I was 37 when I suffered that first seizure. The time has gone so, so quickly.

To keep me on my 30-something toes, the day before my birthday I’ll be completing the ‘virtual’ 2020 London Marathon (postponed from April). There was a period when I questioned if I would do it. I wasn’t enjoying the training and I could easily use the tumour as an excuse but I got over that hurdle and I’m happy to confirm I’m taking part (squashing a 16x week training plan into 4x)…!

There is a degree of nervousness. I’ve been tired after some of the training runs which is inevitable but is the headache because I’m dehydrated or is it because I’m putting my body and my brain under too much stress? It’s all mind games.

Anyway I’ll be running alongside Scott, my friend and housemate. He is running on behalf of Brain Research UK. The Brighton coastline is our chosen destination which, by complete coincidence, is a very flat route. We will also be cheered on by a few socially distanced friends and family. I’m looking forward to it.

So that’s the update. Significant birthdays, marathons, MRI scans and the ongoing brain tumour. Enough for the time being? Seemingly not.

Please welcome, AVA…! 

Ava – 8x weeks old
July 2020

Ava the whippet puppy, who is now at 16x weeks old. She is obviously beautiful (not that I’m biased) and the current light of both mine and my family’s lives.

Ava – 16x weeks old
September 2020

I considered getting a dog during my year of chemotherapy but I wasn’t sure what might happen or how I might feel as time passed and I (rightly) decided otherwise. This time round, there was no hesitation. I don’t want to be one of those dog owners but here are a few more photos just in case you’re interested…! 

So there you go. Significant birthdays, marathons, MRI scans, an ongoing tumour and a puppy to boot (not literally).

It’s only 6x days before the big (marathon) one. I make no apology for posting the following links to our fundraising pages. I know times are tough but the number of people getting cancer or benefitting from the work of brain research has not relented. Whichever charity you support, they need our help more than ever before.

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=Jimmy.Mac&pageUrl=3
Macmillan Cancer Support
https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=scott-harrison-SAVMLMBONDS3332016-16713&pageUrl=4
Brain Research UK

Somebody once said that “running is nothing more than an argument between the part of your brain that wants to stop and the part that wants to keep going”. Hopefully I still have the bit that wants to carry on…! 

Jx

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