Timeline

 

November 2011: I have a strange attack of numbness and dizziness, almost like a stroke, while returning from a long cycle ride that I put down to an exposed nerve in a broken tooth.

January 2012: Another episode while out cycling with a local club, following a sprint section.

February 2012: I have another episode after I get out of a very hot sauna in Majorca, after a long ride on a cycling training camp.

March 2012: More episodes on the bike. I have the broken tooth removed, but I also have a bike crash which lands me in A&E and keeps me off the bike for a month.

15th April 2012: I have another seizure, the first since tooth removal, this time on the turbo trainer. It feels serious, with involuntary movement of my right arm and ‘tics’ in my neck.

16th April 2012: I go to see my GP, report the symptoms as like a stroke. “I’m not going to lie to you,” he says. “I’m really unhappy about this.” I have a heart scan and blood test there and then, and he sends me to the emergency stroke clinic by the end of the week.

18th April 2012: I see the stroke doctor at Colchester General, who does some rudimentary tests and tells me I’m not having strokes. He lines up a whole load of tests for me, to see if we can pin down the problem.

21st April 2012: I have two seizures while out cycling with a local cycling club.

27th April 2012: I have an MRI scan in Colchester. The radiologists start me on one machine, then stop the procedure half way through and put me on another one where they can give me an injection of dye and watch as it works its way through my brain. Everything about their demeanour tells me there’s something wrong, but they’re not saying.

30th April 2012: My GP turns up on my doorstep to “see how it went”. After 20 minutes of chat, he tells me the MRI scan has shown something they think might be a tumour. He’s already made an appointment for me to see a brain surgeon at Romford Queens Hospital later that week. He puts me on steroids to shrink the tumour.

3rd May 2012: The brain surgeon at Romford shows me the scans and tells me he suspects I have a low-grade glioma of 3cm x 4cm x 4cm. Mine is in a very tricky position and it’s beyond his own experience to remove. Gliomas can be operated on and they can be zapped with radiotherapy, he says, but they can never be cured and they always turn malignant eventually.

He advises a ‘wait and see’ policy, to see if the tumour is growing. I’ll have another scan in three months, and monitor my symptoms. If it’s growing I’ll have a biopsy to pin down the exact tumour type and decide treatment from there. If it is not, I come back again after another three months for another scan. He takes me off steroids and puts me on Levitericetam, to prevent epileptic seizures.

15th May 2012: I see a surgeon in London for a second opinion, a kind and clever man recommended by the Brains Trust. He confirms my diagnosis and that the tumour cannot be operated upon. He recommends his hospital takes over my monitoring, where he’ll be part of my multi-disciplinary team looking at my scans.

31st May 2012: I cycle from Colchester to Cambridge hospital to see another surgeon, for a third opinion. A nearly 100 miles round trip. He tells me the same again, and gives me more information about what the tumour will do to me when it turns malignant. Cycling home in a melancholy mood, I have my first seizure since I started on the drugs a month ago. Bugger, I think.

11th June 2012: I officially go on sabbatical from work (I’m self-employed), deciding to take six months off with my family just in case. I see my oncologist (cancer doctor), a jolly man in a Wallace and Grommit tie. He’s good to me, jokes about my cycling and books my next MRI scan.

12th June 2012: I have a seizure, while out race training on my bike. I decide the likelihood of my ever racing my bike again is slim. Tomorrow we go off for a two week holiday to spain, aiming to forget about it all. (Of course, travel insurance is now more expensive).

10th July 2012: I meet my neurologist at UCL London Hospital, who’s very relaxed about the whole thing. He’ll see me again in November.

27th July 2012: MRI scan, the first since the original scan back in April.

6th August 2012: Appointment with my oncologist, to discuss the results of the MRI scan. They declare the tumour is ‘stable’ meaning no growth, and no enhancement (take up of blood). I do a little dance. They say come back in six months and we’ll have another look.

25th August 2012: Mild seizure while out on the bike with VC Revolution, after sprinting for a line. Must learn I can’t do that anymore.

8th September 2012: Out of the blue, I’m taken down by most painful stomach cramps I’ve ever experienced. After eight hours of fighting, I finally give in and go to A&E. The doctor tells me my brain tumour has given me a stomach ulcer (called a Cushings ulcer), and gives me yet another set of pills to take daily.

21st September 2012: I have a seizure seven miles into a solo ride. I wasn’t working particularly hard, but I have been sick with a cold lately and am not quite bike fit. Nevertheless, not great news.

22nd September 2012: Bugger. Another seizure, again while on the bike but not working hard. Will continue to monitor closely.

29th September 2012: Yet another seizure, again while going relatively gently on the bike. One more and I’m asking for my February MRI to brought forward. Been feeling quite sick, tired and headachy all week.

14th October 2012: First time back on the bike since my last seizure on 29th September, and… I have a seizure. So, I’m going to write to my neurologist and ask for the MRI to be brought forward. What a bore.

4th November 2012: I’ve spent the last few weeks running, rather than cycling, while my drug dose has been increased to tackle these damn seizures. The neurologist said no to a new scan, but did agree to up the meds. Did a slow 30 mile ride yesterday, and felt good about not having an attack. Then I did a comfortable paced run this afternoon and had a seizure 25 minutes in. This is what is impolitely called “a kick in the balls”.

6th November 2012: Appointment with my neurologist to discuss my medication and general monitoring. We decide to keep increasing my medication until the seizures stop, as I’m not taking “anywhere near enough” he says.

10th November 2012: Two seizures, at miles 14 and 23, while out for a 30 mile bike ride. Those meds aren’t working yet then. On we pedal.

29th November 2012: A seizures at mile 25, while out for a spin.

15th December 2012: Two seizures while riding to Maldon and back, miles 15 and 30. I’m getting pretty bored of this.

31st December 2012: A seizure at 5.45 in the morning, while still in bed sleeping. This is my first seizure while not exercising, and not good news at all. What could be worse? Oh, another seizure on the same day while cooking the New Year tea for the in-laws, after feeling crap all day. (I’d done a run the previous day, and been on the turbo the day before that – there just doesn’t seem to be any pattern at all.) Am I imagining that pressure headache right where my tumour is? I’ll email my neurologist to ask – again – about my drugs dose.

Early January 2013: I’ve decided to stop updating this every time I have a seizure, since they’re now coming thick and fast – off the bike often, on the bike always. Sometimes five or six in a night, often a couple during the day. Very rarely no seizures in 24 hours. So, just kind of assume I’m having seizures frequently until I tell you differently, OK? The neuro just wants me to keep taking more and more of the same drug, but it’s not made the slightest difference so far has it? When I see him in February, I may have a little tantrum.

25th January 2013: The seizures are only getting worse, so the neurologist puts me on Clobazam (as well as my current drugs), are hardcore drug that immediately stops the seizures. A few days later I start having them again, but then they go away again. I’m more or less seizure free for the following three weeks. But I can’t stay on Clobazam for more than four weeks, as I’m reliably informed they melt your brain.

1st March 2013: MRI scan. It takes an hour, but the radiologist said they got ‘good pictures’

12th March 2013: Results day, with my neurologist. He declares the tumour hasn’t grown. (Hooray) But that there is obviously some ‘change in the tumour’s metabolic environment’ which is why my seizures have continued to get worse. (Boo). He raises my drugs dose again, adds in a new drug for good measure, and sends me packing for another six months. I vow to try to find out what he means by ‘change in the tumour’s metabolic environment’.

27th March 2013: The seizures seem to have settled into a three or four days on, three or four days off pattern. They’re still coming when I do exercise, but thanks to one of my drugs, they’re dampened down a bit. I’ve been making concerted effort to get out on the bike and turbo a lot (despite the awful weather) and am starting to feel fit again. If we can just get these drugs to tip the seizures over the edge and go away completely…

8th April 2013: My neurologist calls to follow up a query I had, but also to tell me that some missing MRI test results have come in. They show a significant and worrying uptake of blood in my tumour. He wants me to have a biopsy and the subsequent letter referring me to a brain surgeon contain the words “this may be indicative of glioma undergoing malignant transformation”. A cursory look at some scientific papers confirms a blood uptake at the level we’re talking about almost certainly means my tumour has gone malignant. In short, I could well be in trouble.

2nd May 2013: I have my biopsy, which goes well. I’m in hospital for two nights, but come out with all my faculties intact. There’s a massive gash in my head, where I thought there would only be a small hole. Nevertheless, I’m alive… and waiting for the most important results of my life.

14th May 2013: Results day from the biopsy. I have what is known as an oligodendroglioma. It could have been worse, so there’s that at least. It’s still a terminal disease, made worse by the fact it can’t be operated on.The biopsy didn’t get any grade III cancer cells, but my seizure activity and the blood uptake in the tumour means they want to treat me as if it is a grade III cancer anyway. That means chemo and radiotherapy sometime soon, if I’m willing. We set up a whole bunch of meetings with oncologists, and schedule a new MRI scan for August, to monitor growth and the tumour’s blood uptake.

6th June 2013: I meet my oncologist at the UCLH Cancer Centre to talk about what treatment my London team think I should have. I’m told I do have the genetic markers that indicate a longer life expectancy: IP/19Q and IDH1. My oncologist agrees to wait until my next MRI scan in August and results in September, to decide whether to begin treatment. She has 42-weeks of treatment lined up for me. First, I’ll do six weeks of daily radiotherapy, followed by 34 weeks of PCV chemotherapy: six times six cycles. I’m not in much rush to get underway.

Late June 2013: The seizures are back. They started only occasionally, but now are coming once or twice a day. They’re back to the same intensity they were when they began, but don’t seem to be connected to exercise. I can only take this as an indicator of further blood uptake in the tumour, or further growth. That August MRI is becoming more and more important.

July/August 2013: And relax. Seizure activity has taken a downturn again, and most of August was without a seizure at all. I guess these things really do come in waves.

21st August 2013: My next MRI scan. After the results of the scan, I should be in a position to decide whether to get treatment soon, or to wait, or something else.

3rd September 2013: I meet with my neurologist. Against all expectations, he tells me the tumour is stable. There’s no need for any immediate action, no need for treatment. He says come back in six months, and that he won’t even want to measure my tumour’s blood uptake for another year. Another lucky break after a few months of worsening health. He prescribes yet more anti-epilepsy drugs, promising me we’ll get my seizures under control soon.

Early November 2013: A huge upsurge in seizures, mostly light but sometimes as frequent as two or three times an hour. I also start to have difficulty with my speech, tripping over words or not being able to find the right ones. We’re staying calm, having been spooked before. We’re assuming it’s all part of the constant up-and-down of my seizures and symptoms. I don’t want to take any more drugs, as upping my dose the last time left me knackered and irritable for weeks.

February 2014: My next round of MRIs and results day. All is stable, with no noticeable growth. This wasn’t a trace scan (looking at blood vessels in the tumour) so there can be no conclusions drawn, but generally things are good. Though there’s nothing further my neurologist feels he can do about the seizures. Come back in six months.

March 2014: I discover, by chance and thanks to an email from a brain tumour patient, that because my seizures are stable and don’t affect my ability to drive, that I can apply for my driving license back. Better still, I can start to drive the moment I’ve apply because I voluntarily gave up the license in the first place. For the first time in two years, I can drive my kids around again. I’m ecstatic. My neurologist has supported my re-application. All I have to do now is wait for it to be rubber stamped by the DVLA, and I get the piece of paper. But I’m driving right now. Hooray!

June 2014: After a conspiratorial little meeting with a fellow brain tumour patient, I decide to ask my neurologist again about my seizures. I want to try some different drugs. He agrees, which is good. I ask him: why not just take me off the drugs all together. He tells me that wouldn’t be clever, and shows me the growth of my tumour since the very first scan, which is significant though within ‘the margins of expectation. What he means is: though he’s being telling my my tumour is stable, that doesn’t mean it hasn’t been growing. And I assume from this, it will keep on growing at the same or a faster rate. It’s like a little kick in the stomach. Over a period of months, we try the new drugs. It makes no difference I can detect to the seizures. (Meantime, we agree to postpone my next MRI until November, so the drugs can bed in and to allow for my house move).

August 2015: We move. The whole family decided at the beginning of the year that we can no longer live in Essex. At the time, I was feeling particularly isolated because I couldn’t drive and we lived in a house pretty much in the middle of nowhere. Meantime, my wife had very poor access to her work and we are increasingly reliant on her income because of my seizures and fatigue. We move back to a city. But it’s not just down the road. It’s not even the same country. We move from Essex to Belfast.

6th November 2014: After months and months of chasing (seven moths to be precise) I receive a letter from the DVLA about my application to drive again. It’s been refused. I cannot drive and am devastated. One envelope has suddenly turned me from someone who has driven perfectly safely for the last sevent months to someone who’s a danger to myself and others. I contact my neurologist who say’s he supported my application, so what’s going on? I’m going to appeal the decision.

19th and 20th November 2014: My next MRI and results days. They’ve been squashed together, because I now live in Northern Ireland and have to fly in to London for my appointment. Things continue to be broadly stable, though there is some mild enhancement at the top of my brain tumour. My neurologist wants to keep a close eye on it, but I’m to make an appointment for six months’ time as usual.

December 2014: The DVLA writes back. Despite my neurologist signing me off for driving, and the heap of evidence I’ve provided that my seizures do not affect my ability to control a car, I have been, effectively, banned for driving for life. They refuse to provide any date for when this decision will be reconsidered.

15th December 2014: I stop writing this blog. I can no longer drive, I’m still having seizures, but I’m relatively healthy. I don’t want to share things that aren’t useful or interesting, so I call a halt and decide to go quiet for a while.

18th and 19th May 2015: I see my neurologist again in London for my six-monthly check. The enhancement in the top of the tumour remains, but doesn’t seem to be getting any worse. The seizures refuse to go away and I remain fatigued, sleeping for an hour most days. My neurologist tries me on another third drug, replacing Lacosamide with Parampanel.

I immediately start to feel less tired. It’s as if I’ve been living under water for the last two years. I realise the other ‘third’ drugs I’ve been on haven’t worked and have also created in me a consistent fuzziness. But Parampanel does come with two significant problems. First, it makes me so dizzy that I can only take it last thing at night. Second, it does absolutely nothing to stop the seizures. In other words, this ‘third’ drug doesn’t work any better than the others did.

16th and 17th November 2015: I’m due my next appointment and MRI scan, but because my usual neurologist is away I see a colleague. He declares the tumour to be stable once again, which of course is cause for celebration. But he’s not happy with my drugs. If I’m getting dizzy and it’s not stopping the seizures, then I should consider coming off the Parampanel.

Late November 2015: I’m informed that The National Hospital for Neurology and Neurosurgery (NHNN) in London is (understandably) kicking me out. I can no longer be MRI’d or seen my by usual neurologist because, now I live in Northern Ireland, I have to be cared for here. I need to find a Belfast consultant who will oversee my care. I try to keep an open mind, but it truly feels like I’ve lost the best doctor I’m likely to get.

I write a long letter to my GP in Belfast, outlining my condition, seizures and drugs in detail and asking for a referral to a well-recommended neurosurgeon here. But I also state my intention: I want to try to get sent back to London for my care.

31st December 2015: Nature intervened in the whole drugs and side effects debate. My wife gives birth to a little girl, a third to add to our brood. With getting up in the night suddenly a frequent occurrence, I simply cannot stay on the dizziness-causing Parampanel. It’ll be mid-March by the time I’m clear of it completely, but since it hasn’t worked to stop my seizures anyway, I shan’t mourn its passing.

1st February 2016: It’s been six weeks since I was referred to a new neurosurgeon in Belfast. I’ve heard nothing. I call his office and am told I’ve been put on his ‘regular’ waiting list. It could be anything up to 18 months until I’m able to see him. I take a deep breath and I politely explain: I’m on a six month MRI protocol to monitor the continual growth of a non-operable brain tumour. My next MRI is due in May. By the end of the day, the office calls me back with an appointment on 9th March 2016.

10th February 2016: Quite out of the blue, I receive a call from a different Belfast hospital. I’m to see a neurologist there on the 7th March 2016, two days before seeing the neurosurgeon on the other side of the city. The neurologist will look after my epilepsy while the neurosurgeon will worry about the tumour. I write another letter, again outlining my case to be referred back to London. I love living in Northern Ireland, but for the first time my wife and I question whether moving here was the smartest thing to do for my health.

24th February 2016: Slight changes in my health and big changes in how my care is being handled make me feel that this tumour is ‘happening’ again. There are important things to share as things develop over the coming weeks and months. After more than a year’s break, I begin blogging again.

End February 2016: I see a new neurologist and a neurosurgeon in Belfast, my new home. The neurologist refers me to the specialist epilepsy clinic, while the neurosurgeon reckons he can operate on me: throwing everything I thought I knew into doubt.

30 March 2016: My first MRI scan in Belfast.

 

 

One comment

  1. Hello 🙂

    My name is Johan Swanepoel, and I am writing you a letter from South Africa, Western Cape.

    I was sourcing the internet and came across your timeline, which I read until 30 March 2016. Im just curious to know what happened next…

    Also, I would love to share my story and what happened to me….

    Im a 25 year old competitive cyclist, often on my bike training solo or with my club.
    About two and a half month ago, I first started to get numbness in my right hand when in cycle but ignored it – thought its just a nerve which will come right as it only last for about 7 second.

    A couple of weeks went past when me and my cycle club went for a ride and sprint up at one of our hills when I got a massive shock in my body. My right hand got num, right noise runny and struggled to breathe. I told the guys something is wrong but past quickly and carry on cycling.

    This doesn’t only happened now when cycling anymore. It happened 2/3 time a daily plus my right cheek get warm and struggle to pronounce my word – otherwise talk funny.

    About 2 weeks went past when my body/brain told me to take a brake from work also to sort my problems out…

    It was a Friday morning when got a neurologist appointment. He did some tests on me and booked me for a MRI scan the following Tuesday morning. He also gave me 300g Epilizine pills (drugs) which I had to take twice daily. (Maybe try these with the seizers – worked for me)

    Tuesday I went for an 45 min MRI scan… Afterwards got dressed and walked out the front door when they came to call me back for another 20min scan.
    I realized on the first scan something is wrong because I guy was doing it at first but later I saw in the reflected mirror there was 5 people standing there looking all worried.

    Nevertheless, it was my girlfriend and I’s anniversary so went for wine tasting and for the day when my mom phoned in tears telling we should come back home… They told me the news, I have a 3m in radius tumor on the brain, which was more devastating for them.

    The following day I went to the hospital because Im getting the operation the Thursday morning 7:30. I was in the ICU for 2 day but the operation was a success however, I could’t talk. The speech lob on my brain was affected at first but now its coming on nicely… For 8 days I was in hospital and went for 1 more MRI scan on the spine from the neck to bottoms but that showed cleared.

    It turns out that I got diagnose for a rare cancer on the brain. Not once but 3 times my histology changed, from most malignant cancer to a very rarely tumor…
    After 3 doctors looked at it appears that I have had the ependymoon cancer. However, they will use my experience to examen the cancer as they have not yet seem my specific tumor for my age first of all and secondly the positioned of it on the brain. It normally appears right in the middle of the brain on top but mine was next to my ear and speech lob.

    Im also not allowed to drive for 6 months but may exercise again from 01 September 2016.
    I’ve got a big scar over my skull which I am proud because I’m a fighter.

    Now I’m free of cancer and feel happy as ever. So blessed.

    Regards

    Johan

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