More than a whisper

fe3bc42d588b6579a6d04f3019da96d7With the deep and depressing feeling of inevitability, my epileptic seizures are back.

Just a sniff of them, but enough to know that they can only build from here. Too soon they will become a regular feature of my life again.

It’s a kick in the nuts, particularly since the disappearance of my seizures had been the most positive outcome from 30 days of radiotherapy and yet another drugs change.

The seizures had disappeared so quickly it came as a total surprise. A few weeks before, I was shivering in my neurologist’s office, having seizure after seizure even as I spoke to her.

My language was regularly confused. My ability to do much – exercise, socialise, concentrate, speak eloquently – was curtailed. I was dis-abled by my brain tumour.

Then, snap. Just like that, they were gone. Not just reduced, but disappeared completely. It gave me such a boost that I was already planning the date I’d apply for my driving licence back next year. I have to be seizure free for a year before the DVLA will even consider it.

It is not to be. I’ve written it before in these pages: I know I will never drive again.

I came through the month of daily radiotherapy, and then the month’s recovery period, without a seizure. Then I began chemotherapy, and for the first few weeks, the seizures appeared to stay away.

I say ‘appeared’: I can’t be sure. They begin as whispers, and I often can’t tell if there’s something going on up there, or it’s just part of the general mix up that cancer treatment is leaving behind.

Because chemotherapy has not been side effect free, as I knew it would not be. There’s nothing precise. No vomiting. No days unable to get out of bed.

Instead, the constant and debilitating fatigue left over from radiotherapy has continued. Hardly a day passes without my having to sleep for an hour, often two. My limbs sometimes feel as if they’re hanging from my body. It can be an effort to keep my eyes open.

And with crushing fatigue comes the pressure of guilt, as I’m not able to do what I’d like and need to do in so many areas of my life.

As the evenings approach, my ears feel blocked, there’s a ringing in the back of my head. As I try to sleep, I ‘hear’ a tapping, like multiple mini nails being driven through tin.

Frequently I bump into doorways. Often, I momentarily overstep my balance. My jaw hurts and my teeth feel oversensitive and chalky.

In the melee of side effects – along with the fatigue and mild depression generated by them – mini-seizures could have passed by barely noticed.

But in more recent weeks, the seizures have been more identifiable. As with the beginning of this whole story, they started again only when I was exerting myself on the bike. That same old dropping away of consciousness on the right hand side. The spreading out of numbness from the right side of my jaw.

More recently, the seizures have begun to again come unprovoked. Yesterday, while working at my desk, my right hand side felt like there was no-one home. I was unable to speak for a minute or two. Like a jigsaw puzzle, my body slowly put myself back together and I got on with my afternoon, albeit tired from the episode and needing to nap.

What does all this mean?

I know no more than I did before the seizures went away.

My previous London neurologist assured me seizure patterns weren’t necessarily connected to tumour growth or intensification. Yet at the very lowest ebb of my seizures – in May this year – it was discovered the tumour had intensified and I ended up beginning cancer treatment.

The treatment and the reduction of seizures may have co-incided, but now the seizures are back.

Perhaps I have adapted to the new anti-epileptic drugs? Perhaps the seizure return is due to the damaged brain tissue from the radiotherapy? Or maybe – let’s face it – the seizures’ return heralds the tumour’s regrowth (or at least reassertion) after the treatment?

It took nearly four years for my seizures to move from only very occasional, and only when exerting myself on the bike, to regular and unprovoked. I’ve done that same journey in the last three weeks – though I’m not yet close to the severity of seizures I was suffering when I lay down for the first time on the radiologist’s bench.

I have had one round of chemotherapy so far. Apart from the side effects above, I’d argue I came through it well. I’m due to start the second cycle on 13th September. Will I come through that just as unscathed? Or perhaps the negative effects of chemotherapy will be cumulative, and I’ll be knocked down harder each time I step up to take the chemo cocktail. There are still five more rounds to go.

On 9th September I have an MRI scan. When I see my oncologist on 13th, I presume they will have seen the images. But I’ve already been warned that these will be ‘baseline scans’.

The radiotherapy will have caused so much scaring and other damage in my brain, the MRI won’t tell us too much. Only the MRI afterwards, and the one after that, will tell us what the tumour is doing.

But it is too much to ask to be totally relaxed about that first MRI.

There’s always the possibility that the images will clearly indicate the tumour has already grown or further intensified. Or that the radiotherapy has not worked at all, and it’ll be sitting there, just where it was. Unchanged, but with a smug grin on its face.

However much I try to kid myself, the return of the seizures means the oncology meeting on the 13th September feels like a biggie.

Yet again, I’m approaching what I can’t help feel might be another turning point.

I’d like to say you get used to it.

7 Comments

  1. It’s a struggle always. Living from treatment to treatment and MRI to MRI. I am Wishing you the strength to get through each day …. Moment by moment and rest when you can
    D

  2. I’m not sure we ever get used to it mate.

    Trying to find a positive , after a while we have started discussing the scans with the doctors as equals rather than just us being told what they mean. I know my last one we ended up chatting about ins and outs of various scanning techniques.

    Keep on keeping on. I’ll bet there aren’t many tumour patients have been up Mont Ventoux like you 🙂

  3. My husband is going through a similar journey. It’s very hard, no easy answers. I appreciate you writing this blog though, and putting out there your thoughts in a very honest form. It helps to know someone else is going through the same decisions. Hope the scan goes ok for you.

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