Rocking the boat

What do you call two brain tumour patients in a coffee shop? Trouble, that’s what you call it.

TwoBTPatientsWhen I last wrote on these pages it was with worried words that I had perhaps become boring. My situation wasn’t changing much and perhaps I was running out of things to say. To be honest, I was getting a bit bored of being the brain tumour guy.

I wondered – as long as my tumour remained stable and things stayed more or less as they were – whether I should perhaps pipe down a bit.

But just because I’d stopped writing here for a while didn’t mean that people weren’t out there reading and, I hope, getting something out of the blog.

And I hadn’t gone entirely silent either. About once a week I get an email from a brain tumour patient, a friend or member of their family who’s read the blog or my book Living Low Grade and are seeking advice.

Most times it’s a too familiar story. Patients aren’t getting the information they want from their doctors. They’re not happy with their consultants. They wonder whether the treatment pathway they’re on really is the best for them. Some are puzzled because they haven’t been told what type of tumour they have. A few have asked, but the consultant has refused to tell them.

Each time, I try to answer reassuringly: I urge them to speak up if they’re unhappy with how things are going. I tell them to arm themselves with information and to ask their consultants where what they’ve found out fits into the picture. I say patients have a right to get second opinions. And I tell them what that I truly and absolutely believe: that our doctors know better than we do, we should listen carefully to them and most often we should do what they recommend.

But I also repeat one of the key themes of my book: doctors and consultants may know a lot more about brains than us, but they don’t always have the time to consider our questions and very natural worries properly.

Most importantly, they sometimes fail to understand that when we leave their office we have to continue trying to balancing our brain tumours with the rest of our lives as best we can.

I received the latest of these emails yesterday and it finally sent me back to this blog with a confession.

The thing is this: I can dish it out but – as I found recently when I met a friend and low grade brain tumour patient for coffee – I don’t always take my own medicine.

The time flew by way too quickly as we sat in a packed coffee shop and bitched about our conditions. We don’t have the same low grade brain tumours, but we do face similar challenges. We both totally respect our various doctors and consultants, but – me especially – had become complacent.

I’m still having very regular partial focal seizures. Every single day, sometimes ten or even 20 a day. Instead of chasing this up, I’ve just sat back and accepted it as part of my condition.

Thing is, my partner in coffee reminded me, I shouldn’t be satisfied with that. There are any number of alternative drugs I could be on, and one of them might just work better. I needed to challenge my neurologist to try a different strategy.

It may not solve the seizures. It might even make the seizures worse. But at least I’ll be doing something. I can try or I can do nothing and continue to suck up the seizures.

She’d been having similar problems in relation to her MRI scans, not getting what she wanted. She was not hearing what she needed to hear, but her consultant was refusing to budge.

We made a pact: she’d go off to get a second opinion on her issue and I’d go back and tell my neurologist that I wasn’t happy. The current drugs regime isn’t controlling the seizures and I want to try something new.

Three weeks later and here’s where we are: I have a new appointment, specifically to talk about changing my drugs. She has had her second opinion, and it’s confirmed her picture of the situation, rather than her consultant’s. She’s now considering her options.

To be honest, we both should have seen it coming. We have form.

Within an hour of the Living Low Grade live panel discussion, another brain tumour patient posted on the Living Low Grade Facebook page that I might be able to get my driving license back.

It was news to me and I was straight onto my friend. She didn’t know about the rule change either.

The rules for driving and epilepsy changed on in March 2013. Even if patients have brain tumours and are still having regular seizures, they can drive as long as their doctor is satisfied that their seizure pattern has been regular for a year and that they wouldn’t prevent the safe handling of a car.

Most consultants don’t know about the change yet and my GP certainly didn’t. Word is many staff at the DVLA haven’t got wind of it.

And guess what? Both my friend and I are both driving again. We’re taking the kids swimming. Visiting friends. Going to Tesco, by ourselves! For her it had been five years, for me two and a half.

Popping out for a pint of milk never felt so good.

(I’ve decided to stay off the motorway and big main roads, just for my own peace of mind. But it’s not the big journeys that bothered me anyway.)

What’s the point of this story?

It’s that brain tumour patients might just surprise ourselves if we take time to share our knowledge and experience with each other. That professionals and clinicians aren’t the whole picture. What might seem plainly obvious to you – even boring – might just change someone else’s life. Or at least make them feel better.

If even one reader turns to the revised DVLA rules after reading this, or knocks off an email to their clinician with the question that they really want answers to, or even just starts to think that what they’re currently putting up with needn’t necessarily be, then I’ll have taken my own medicine.

One of the aims of the Brain Tumour Charity is to support and empower patients to make decisions about their own care, and to enable us to share information and experiences with each other. To help us all gain from our collective knowledge.

The charity holds frequent patient information days, with talks by clinicians, researchers, Brain Tumour Charity staff and – most significantly – patients and their families. Dozens more patients sit in the room, contributing to the discussions and chatting animatedly over coffee breaks and lunch.

If two brain tumour patients can change their own lives over coffee, just imagine what a whole conference room full can achieve.

9 Comments

  1. Glad to see you blogging again. Good advice, didn’t know that about the DVLA. Congratulations on driving again. I drove in Sicily last week and had to learn how to drive like a crazy Italian. Was quite fun but they are nuts sometimes. Must overtake, must overtake!!

  2. Well done Gideon for an interesting Blog. The basis of your story is never say never! My daughter Marie has been an inspiration to us all and she is so positive. It seems it was a good idea to have coffee!
    Keep it going Gideon. I read your book and it is something you should be very proud of.

    Best wishes to you, and my love to my daughter Marie.

  3. Well done Gideon, it looks like a coffee did the trick. Those consultants always look down at everyone. Marie has been so inspirational to us all with her positive thinking, as you have been.
    I read your book and you should be very proud.
    Keep it going Gideon.

  4. Hi Gideon–What a great post. I’m inspired by your insight and glad you can give wifey a rest by drivng the kids around and doing some grocery shopping. Big hug! Anne

  5. It’s all about empowerment. Emmeline Pankhurst knew that too!
    Rather than floating aimlessly, if we can be in partnership with the highly qualified & dedicated professionals that’s good for everyone.
    Good to hear from you again & glad that you feel able to blog as appropriate, rather than as a duty to your followers!
    Hope chillies are looking promising?
    Love to you all,
    Penny

  6. So glad to read this, have been missing your posts and this one’s a corker. I have never yet been bored by any of your pieces though, so there!
    If you ever find yourself in London and at a loose end do let me know. I would love to buy you a coffee/pint/cuppa sometime x

  7. Hi Gideon, thank you for the latest instalment.

    We hadn’t heard about the changes to the driving rules, am pleased that both you and your friend are now driving. Sadly, my hubby won’t be able to drive as his seizures are unpredictable and he has no aura.

    Congratulations!

    Nina

Leave a Reply

Your email address will not be published. Required fields are marked *