Known unknowables

Six months can roll around so quickly, especially when the sun is shining.

It was six months ago that I had an MRI scan which revealed an increase in the spread of blood vessels (vascularity) in my brain tumour. Coupled with a radical increase in the number of seizures I was having, it led to my having a biopsy to pin down the type of tumour I have.

The biopsy revealed I have an oligodendroglioma, but it only recovered grade two cells (on a scale of 1 to 4). That in itself was good news.

But my multidisciplinary team couldn’t rule out the tumour might have grade three elements, and therefore be turning into a malignant cancer.

My neurologist advised we should treat the tumour as if it was grade three, and that meant starting treatment soon: a 42 week programme of radiotherapy and chemotherapy.

I decided, with the agreement of my oncologist, to wait until the summer was over. The holidays were approaching, the kids would be off school and I had some cycling events and challenges planned (seizures permitting).

Well, now the summer holidays are almost over. Most of my cycling challenges are satisfyingly complete. In a couple of weeks, school starts again.

On Wednesday will be my next MRI scan. A couple of weeks later, my neurologist will tell me whether the tumour has increased its vascularity further, or if it has grown.

If it has done either, he’s likely to ramp up his advice to start treatment.

I’ve may have made hay while the sun shines this summer, but where will this next scan leave me?

I reckon I’m going to take some serious convincing to start treatment any time soon.

I feel well, my cycling fitness is probably better than it has ever been and – inexplicably – my seizures are under better control than they have been for almost a year. I’ve only had one in the last month, though I know that could change any time.

Even if the tumour does show an increase in vascularity or growth, outwardly I’m showing no signs of it. And in some sense, that’s all that matters.

Over the last six months, I’ve developed a philosophy about my tumour, my treatment and the end of my life.

I do not know – because no one can tell me – how long I have to live.

I do not know – because no one can tell me – how long, if at all or for how long treatment may extend my life.

I don’t even know the extent of the side-effects that may result from the radiotherapy and chemotherapy I’ll have.

In that context – where the progress of my condition and the time until end of my life is unknown, and even the ability to postpone the inevitable is not known either – what does it even mean to make decisions about what I should and shouldn’t do?

I’d be basing them on no knowledge at all. All I have is known unknowables.

So for me I can only make decisions based on how I feel right now: my ability to get most out of my family life, my work, my cycling. Those are things I do know.

Of course, if my neurologist says things have gone so far that treatment really is necessary, and that it will make a significant difference to get underway as soon as possible, I’ll take notice.

But as long as things hang in the balance, after this Wednesday’s MRI and the results day two weeks later, I’m planning to go with what I know right now. I’ll leave the known unknowables for another day.


5 Comments

  1. Fair enough!
    So glad that you have had a good summer with plenty of cycling & not many seizures.
    Long may that continue.
    Hope that MRI gives encouraging result.
    Tonight we enjoyed chickpeas with homegrown chillies……
    Love to you all x

  2. Live each day like it’s your last. Overused cliche and easy for me to say, but it’s true.

  3. Make hay while the sun shines! Keep doing what you love to do. All the best with your next MRI.

    Last weekend I completed my challenging charity 226km Ride to Conquer Cancer. 1236 riders raised $4.2million for cancer research. As I promised earlier in the year Gideon, your name along with the names of many others helped me cross the finish line as I slogged my way up some “mother …..” hills.

    Keep on keeping on …. If you and others can do it then most definitely so can I. So I did!

    While ever there are funds to support world wide research there will be hope!
    Regards

  4. Was going to wish you good luck with MRI scan – stating the obvious though – sorry. Think your logical thoughts about possible treatment sound – don’t get rushed into anything while you are ok.

    Know you don’t do the religious thingey so won’t say you are in my prayers – I am thinking about you n sending positive vibes to you all instead.

    Hope the seizures stay away – that must make a huge difference to your day n what you can do. If you know and feel one is coming on, having a glass of water can help, don’t know why but worth a try.

    Warmest best wishes, Bevey xxx

  5. Hi Gideon,

    About eighteen months ago I went in for a craniotomy which I had to fight to get scanned and diagnosed (had to go private) it was about a year ago now I was finishing radiotherapy, I know where you stand with the unknowns, you are sent away to “survive” to the next scan and there gets a point where living life like there is no tomorrow gets a bit thin. I did have some complications during surgery and when I left hospital I was on sticks, I am now out on my bike most days, have to, my licence is being looked after for 2 years by the DVLA. I will admit to having absences as opposed to seizures which I have had no signs of since starting medication, watched my sister cry when I climbed down a cliff to swim across my local bay which was about a mile.

    Guess what I am saying is pecker up, I was told that I had a grade 2 on admission but they biopsied the tumour while I was in and added “anaplastic” to the oligodendroglioma which I have striven to ignore, but no one else share that with me, been harassed by work and ex wife and had neurologist (the private one on his dayjob) say to my sister of my costody battle “why is he bothering? you know its a grade 3 dont you?”

    Just keep plugging away,

    Neil

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