How stable is stable?

UnknownThis week is results week. Though we’ve managed to stave off fear for the last month or so, during these last four or five days it has really set in.

On Monday I will have an MRI scan, and on Tuesday my neurologist will tell me whether my brain tumour has grown and whether the blood vessels inside it have proliferated any further.

It invades my every moment and makes it hard to concentrate on much for very long.

I guess the worrying started just over a week ago when, out of the blue, a letter arrived from the DVLA. I’ve been driving since June, following information I’d received from a fellow brain tumour patient about a change in the legislation.

The detail is complex, but it goes something like this: because I gave up my driving licence voluntarily, after my first seizure; and because I now have stable seizures (I’m still having them, but they are consistent); and because my neurologist agrees that my seizures would have no impact on my driving; then I could apply for my driving licence back.

From the date of making my application, and with my doctor’s support, I’ve been back behind the wheel and driving for seven months.

But since then I’ve been waiting for the DVLA to send my actual licence back. I’ve had to chase them three times, but was finally delighted when the thick envelope slumped through the letter box last week.

Then I opened it: my application had been refused. Despite driving perfectly safely for the last seven months, and having been signed off to do so by my brain doctor, the mere opening of an envelope suddenly made me a danger to myself and others. I’m appealing, which I’ll write about another time. For the time being, I am banned from driving again.

I would have been devastated at that news alone, but it also had the effect of reminding me what was on the horizon, short- and long-term.

In July I went to see my neurologist to talk about drugs. I insisted my epilepsy drug regime just wasn’t working as well as it should be, and that I had a right to try something else to get rid of the seizures. I demanded we try something else. (I was more polite than that, but you get the general gist).

I said: why not just, you know, take me off the drugs all together? After all, I was having one seizure each month before I started the anti-seizure medication, and now I’m having them daily. Sometimes, even hourly. So why not go back to the start?

“Oh,” he smiles, shaking his head a little. “I wouldn’t do that if I were you.”

“I don’t understand.”

“The reason your seizures are more frequent, and the reason you are on so many drugs, is because the tumour is progressing.”

It was the first time since he asked me to have a biopsy that he’d said anything other than a cheerful: ‘Everything is stable, come back in six months.’

He revealed for the first time what he had just assumed that I knew: the tumour is – day by day – getting bigger. Developing. Taking on more blood. By ‘stable’ he doesn’t mean ‘doing nothing’, he simply means ‘doing what slow growing tumours do: slowly growing’.

He showed me my first ever MRI scan (March 2012) and compared it side-by-side with my latest (February 2014). There was a noticeable – not massive, but noticeable – difference in size, particularly in the depth of the tumour.

I came away from that July meeting with two things.

First, was a prescription for a new drug (lacosamide) to swap with one of my other ones (lamotrigine). Second was the reminder that, maybe sooner than I thought, I would have to a decision about when to start radiotherapy and chemotherapy.

Back to the present day, and this is what is on my mind. Because of my house move and the change in medication which postponed them for a while, this week will see my first MRI and results day for eight months. It will be the first time I’ve had a blood vascularity trace (showing the activity of blood vessels in the tumour) for fourteen months.

That’s a lot of time for change to happen.

As I approach the MRI on Monday, and results day on Tuesday, I’ve learned the key question has changed. It is no longer: has there been any change? Change is inevitable. The question is: how much change? Just how stable is stable?

I used to think at these results meetings that no news was good news. I now know it really means: well, it could always be worse.

*

My epilepsy medication in full:

Levetiracetam (Keppra): 1500mg in the morning, 1500mg in the afternoon
Lacosamide (Vimpat): 150mg in the morning, 150mg in the evening
Clobazam (Frisium): 20mg in the evening

It took 12 weeks to swap the lacosamide with lamotrigine, stepping-up and stepping-down the doses every two weeks. Finger in the air, I’d say the new medication is doing slightly better to stop seizures breaking through.

9 Comments

  1. We’re all still here – can you feel it? a ton of people are loving you and will be thinking of you all this week. xx

  2. Thinking of you as you face results day. I know how you feel as I go through the same every 3 months at the moment. Stay strong x

  3. Glad to see you writing again, it helps us others with tumours immensely. It’s frustrating and scary, no two ways about it, what can you say really but good luck with the scans and the future. Doctors are dam confusing. You realise later that you need to read between the lines with them and that actually they were just not telling you anything negative because they didn’t want to until they needed to. That’s probably in a way for the best because we all need to keep positive and if they were all doom and gloom all the time it would be harder to live with.

    Hope my comments aren’t unhelpful I just feel it’s really tough and you know it’s personal strength and family support that is the most important thing.

    Ben

  4. Keep Strong,

    The DVLA are a nightmare, they made me wait the full 2 years for my licence back. I received a post dated licence to start on the day my time expired. They are not up for negociation, I had my MP talking to them after advice from the Macmillan website. I had refused to return to driving without my licence though they advise that you can drive while your licence is being processed, section 88 was bandied around for quite a while, even the police did not know what to say, having one shift at Plymouth’s traffic division telling me to go ahead and the next advising me against it.

    They are a law unto themselves and you are lucky (in my opinion) that you did not have an accident. No one would know where you stood!

    I have cut back on my medication (keppra) to a point where my oncologist sucked air through his teeth like a dodgy mechanic, “If you cease your medication you will have to surrender your licence again” (6 months) he informed me.

    Proper advice is very scarce, which is why it is good to see your blog, as you are on almost the same timeline as myself, though unfortunately I am not low grade. I am told “no change” but nothing further.

    There is always a fight waiting round the corner in this game!

    Hows the cycling going? Not nice in Cornwall at the moment!

    All the best,

    Neil

  5. Awk Gideon sorry to hear they have refused you your license who knows after the appeal they might change their mind, as neil says it took him two years you never know stay positive. Im so glad your continuing with your blog i check in here a lot, the seizure meds are a nightmare marks been on lamotrigine since 23rd october and like youself im asking the question are they making him worse he seems to be staring and getting confused easily plus his skin is breaking out itchy and dry. Its also constantly invading our thoughts also, we all feel the same way we just have to try and be positive and not let the negativity take over. I wish you all the best today thinking about you all.

  6. Just spent all morning reading your blog.As a fellow sufferer and cyclist I found it very moving.Struggling
    to find words to express myself here so I will just say I am thinking of you and praying your struggle is successful

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