Mr Average

rollercoasterThere’s nothing to say and yet everything to say.

Yesterday I received my latest MRI results and yet again I have come away with the relative all clear. There has been no significant growth in my brain tumour, no significant enhancement in the abnormal cells within.

Since my first MRI back in April 2012 – has it really been that long? – the tumour seems to have grown only slightly at its crown. My neurologist has assured me the growth is within what would be expected from my type of tumour.

The only significant visible change appears to be new white patches where the brain tissue was scarred from the biopsy nearly a year ago.

So it feels like there’s nothing to say. I’m Mr Average Low Grade Glioma Patient.

So now, part of me wants me to forget everything about the tumour. To put it completely behind me and deal with it only when things do turn bad.

Part of me wants to pretend it’s not there, that I didn’t even know. I wish I’d never said anything to anyone, that it wasn’t important enough to share.

Even on these pages, I’ve resisted the temptation – unlike before – to reveal that my results day was on the horizon. After four or five repetitions of next to nothing, I didn’t want people to feel obliged to wish me luck, to then read the inevitable good news blog I’d post afterwards.

I’ve made myself the low grade guy, but I can’t help but feel I’ve become boring. And I want to be boring. I want to ride my bike and not think about, and talk about, and write about brain tumours for a while.

Last night, I made a list of the bike races I want to enter this year.

But the truth is, I was waiting for yesterday’s results to make that list. I needed to get the (relative) all clear before I signed up. And as I made my list, I was reminded I can only race in those that are close to home because I cannot drive.

Even in my attempt to escape, the tumour will always be there.

I face contradicting feelings. The desire to forget and ignore, but then the knowledge that I’ve started things I need to finish. This blog, my Living Low Grade book, the knowledge and experience I’ve accumulated and can share.

I know there are readers who look to what I write for support, for revelation, for reassurance, perhaps even for inspiration. I know I have particular skills – writing, communicating, public speaking – that might be helpful for others. I have lots to contribute and I’ve made my bed.

Even as Mr Average there are perhaps further things to say.

As my children grow up and need to be ferried to this club or that, to swimming lessons and birthday parties, my inability to drive – living in the isolated country spot we once craved – has become stifling. A radical change in our lives is no longer a choice. Maybe others have faced the same.

In another attempt to control my regular waxing and waning cycle of seizures, I’ve been told to double my anti-epilepsy medication. I don’t react well when the dose is increased, so the next 20 weeks will not be much fun. Maybe writing about that may be helpful for others too.

When I came out of my results meeting yesterday, it was with a very strange mixture of emotions.

First was elation. Nothing has changed. Go away and live your life.

But then there was an unfathomable sadness, a strange boredom that everything is the same. The roller coaster I advertised when I started writing is puttering along only at an unexciting speed.

And there’s guilt. Guilt that I continue to be one of the lucky ones. That I’m not that other guy in the waiting room, the one in the electric wheelchair and the touch screen he needs to makes his life liveable, the oxygen tank helping keep him afloat.

Some readers may be horrified by these words. I know many are selfish thoughts. I should consider myself lucky, be glad that all is well and will continue to be long into the future.

But when I started writing, I promised it would be the truth. Perhaps others have been, are or will be going through similar emotions. Perhaps other patients think similar unspoken thoughts of elation, followed by sadness and guilt.

If so, maybe I am keeping my pledge to write about every aspect of having an incurable brain tumour. Of permanently, inevitably – but not quite yet – facing the end.

Even if what I write now isn’t what I expected to be writing nearly two years after it all began.

11 Responses to “Mr Average”

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  1. Sarah Jones says:

    Thank you for sharing this Gid. Your feelings make perfect sense.

    Reading this may have helped me understand my Grandmother’s recent reaction to her cancer scan “good news” results. I think she might enjoy your blog.

  2. Penny Graham says:

    Hi Gideon

    Thanks for sharing your latest news. Everything you write about your brain tumour journey will help someone in one way or another. Its up to us – whether we are patients, parents, carers, friends etc etc, to dip in and out and take what we can to support us on our own journeys.

    Take care,

    Penny

  3. Jacquie McAllum says:

    I’m so pleased to read your “boring” and things are cruising along nicely! Go enjoy your life and your family. Absolutely no one will begrudge you that . Thank you for being so honest and open because you do help and inspire your readers. :)

  4. Nikki "Moj" Burrows says:

    Boring results mean a lot when it’s your Mum reading them. May they bore us all silly for decades. x

  5. Penny says:

    Rejoice in being boring!
    Boring is good. Boring is beautiful. Boring is reliable. Boring is comforting. Boring is brave.

    Roller coaster life is exhausting & not to be envied.

    I might even write a poem; an ode to being boring.

    I’m so pleased you are being boring.
    Hope to share some boredom with you soon.

  6. Jim Miles says:

    Gideon – your progress seems excellent. Like me I detect a feeling of a bit of guilt about being in a survival club. I was told in October 2011, with almost certainty, that I would be dead by mid 2012. Sadly many others with a grade 4 go rather rapidly – nine months to a year being average. So unexpected survival became a combination of gratitude, guilt and uncertainty about how to live a gift. I thank Addenbrooke’s, my genes and luck – good old luck.

    Your excellent journalism is a great fortune. So many sufferers have their jobs and skills taken away with a tumour. So enjoy writing.

  7. Gideon

    What is your diet like? There is no mention of food in your blogs? My husband has the same type of tumour, grade 2, double the size. He has mini seizures (auras) but refuses to take the drugs (very stubborn). He is tackling his tumour with diet. We have changed the way we eat radically. I am about to start a blog about his diet. I think you would find it interesting. Our fridge is full of greenery. I buy Kale constantly, we have no processed food at all. His latest MRI has shown that the tumour is stable.

    We also have two young children and husband cannot drive. It is the worst thing for him. He has to sit in the car with me. It is absolute torture – for both of us.

    • Gideon says:

      Hi Moira,

      Thanks very much for your comment and your question. I’m sorry to hear about your husbands tumour.

      I eat pretty healthily in general, but that’s more because I’m a competitive cyclist than because of the tumour or trying to prevent illness.

      I have good and bad news to share, from my perspective. First, and believe me I’ve looked into these things extensively, there is absolutely no evidence that diet can prevent you getting a brain tumour. In fact, the most that’s known about cancer in general is that it is a ‘risk factor’ to NOT have a diet rich in all kinds of vegetables and low in meat. No superfood or preventative supplement has ever been proven.

      One you’ve got cancer (or a brain tumour for that matter) – and again, I looked into it extensively – there is no superfood or diet that will make it go away. The advice is to stay healthy, including a varied and healthy diet, in order to be able to deal with and recover from conventional treatment better.

      I’m very glad your husbands tumour is stable, as is mine. I’ll go out on a limb and say that has nothing to do with kale or diet, it’s just the natural progression of our tumours. However, if you like greenery (and I certainly do) then good for you.

      However, I totally concur with you about the driving – it’s been the most disabling feature of my diagnosis so far. And here’s where the good news comes in. If your husband has seizures that don’t make him unconscious, and that wouldn’t affect the control of a vehicle, then he can apply for his driving license back. The law changed last month, and you can bet I was straight on to the DVLA to get my forms filled in. Your seizures have to be ‘stable’ for a year – meaning they don’t change – but that doesn’t mean they have to have gone away.

      His doctors will have to sign off, of course, but I can see no reason why he can’t get back behind the wheel if he doesn’t have unconscious seizures. So, huge good luck with that! I didn’t know about it, until someone told me on the Living Low Grade Facebook page. I could have kissed them.

      Thanks again for your message, and good luck with it all.

      Gideon

  8. Yvette Guy says:

    Gideon
    Thank you so much for this blog. I was diagnosed in 2008 when I was 39 with grade II Ogliodendroglioma had operation same year. Life as you know turned upside down, working Friday not working following Monday after having seizure. Can’t believe it has been 6 years for me. Only now brave enough to research more about it, my husband did all that bit! Got three beautiful daughters and great husband which is a real asset. Everything you have said is so much like what I have experienced and am still experiencing. I really think that having a positive outlook and ‘living life to the full’ (hate that phrase) does really have an impact on LIVING with cancer. I cycle too! wouldn’t say I was I cyclist but not driving for 6 years I needed to get out under my own steam! I cycled from Cardiff castle to Caernarfon castle 300 miles over a week last September with other cancer sufferers for Odyssey cancer charity, it was fantastic. Just seen your reply about driving, I still have seizures, around 1 a week, focal partial seizures, don’t lose consciousness. My seizures haven’t changed since my op. Wish me luck with the DVLA. Please continue to write such honest, funny and up lifting words, I will be buying your book!

  9. Yvette Guy says:

    I have tried everything to stop my seizures, I have around one a week on average. I have tried lots of drugs and they made me lethargic and not wanting to do anything. I did try a Ketone diet last year for around three months, virtually no carbs, quite difficult but did focus my mind and I lost three stone which I had put on with the steroids and anti convulsion drugs. Got some good receipts if anyone wants them..

  10. Penny says:

    Just a quick line or two in praise of The National Hospital for Neurology & Neurosurgery, Queens Square London, which you know so well Gideon.
    For a different reason, (Syringomyelia a rare complication following back surgery 7 years ago), I have just spent 10 days there.
    An astonishing display of supreme technical skill from three wonderful surgeons, for 3 and a half hours complemented by respectful & constant 24 hour care from a United Nations of nurses.
    I have recovered well & everything points to a stabilizing of the condition which was the intention.

    My recent experience suggests that our NHS remains magnificent.
    Massive thanks to the NHNN & all their staff..

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