Steering My Own Boat and Making a Splash

Steering My Own Boat and Making a Splash

john connor

The U.K.’s National Health Service (NHS) turned 70 last week. In England, yes, we are mourning our semi-final defeat by Croatia in the World Cup, but to most of us, the NHS is the U.K.’s crowning glory. There are innumerable problems and proposed solutions involving the institution, yet it crosses the political divide. It was started by the most left-wing Labour government this country has ever had, swept in — over even Churchill’s Tories — by a general election before the end of the war against Japan. It has endured since then, despite the majority of governments being Tory-led. Even Margaret Thatcher didn’t dismantle it.

If you’re going to get MS, being a British citizen sure takes the load off. From the beginning, I’ve had excellent care. Sure, I’ve had to duck and dive a bit, but in any area of life, things are eased if you get to grips with the bureaucracy and make your own waves. Luckily, MS doesn’t seem to have impaired me mentally (though those who disagree with my ramblings may not concur), so I’ve been able to steer my own boat.

I received a surprise letter to see my neurologist — it was delivered last Saturday, and I got round to opening it on Sunday. It was an appointment to see him the following Tuesday. I thought it might be a mistake, so I checked with hospital appointments on Monday and was told everything was correct. That day, my wife’s back went into a spasm. So, I found myself clambering in and out of the house, as putting ramps down was impossible. Luckily, the ferocious heat wave we’ve been enduring backed off a bit, and consequently, my body functioned better.

I’ve been a patient at Charing Cross Hospital for about eight years. To those of you who don’t know the geography of London, Charing Cross is one of our mainline train stations — and the hospital is nowhere near it. It’s on a different side of the Thames and in a completely different part of town. The London-set John Wayne movie “Brannigan” (1975) has an infamous car-chase scene that Londoners know would be physically impossible in reality. The location of Charing Cross Hospital fits right in. But I digress.

What did surprise me was that all of the elevators were working. At the hospital’s core is a tower block. I’ve never known all four public elevators to be working. (There are others around the side of the building that those in wheelchairs can summon. No one tells you, but the information gets shared by us regular patients.) The auguries were good.

I’d seen my neurologist only three weeks ago. He’d offered me the chemotherapy drug mitoxantrone. Having been through Lemtrada (alemtuzumab), which derives from a chemo drug, I wasn’t keen. The side effects were horrendous. I raised the possibility of trying Ocrevus, but the National Institute for Health and Care Excellence (NICE) hadn’t agreed to its use by the NHS. Mitoxantrone was my only choice.

The very next day after that appointment, Ocrevus was signed off by NICE. My wife heard about it on the in-depth morning BBC Radio news program “Today.” I hit the net, and the news was so new I couldn’t find an easy reference. In the end, I procured a raw source from NICE itself. I immediately attached it to an email and sent it to my neurologist. I don’t have his email, but I had the regular MS patient address at the hospital. Then, I did some old journo sleuthing, worked out who his secretary was, and deduced that email address. Of course, email didn’t exist when I was a journo, but the methodology of this sort of problem-solving is an endlessly applicable tool.

In truth, I’d forgotten all about my email. But that was why my neurologist had called me back so suddenly. Was I still interested in Ocrevus? I was. I’m now one of the first patients at the hospital on the list. Despite England being out of this World Cup, I’m exceedingly happy.

Stick your oar in and make a splash!

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

John Connor BNS Writer
‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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John Connor BNS Writer
‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.

One comment

  1. Katherine says:

    I have PPMS and Copaxone failed me ie: new active brain lesions; exacerbated symptoms; several injury occurring falls – well you get the picture… my Neurologist told me about Ocrevus was just approved for PPMS was I ever interested!! I completed my 2nd infusion last month and am super excited!! minimal reactions that dissipated quickly and am doing a whole lot better- as a matter of fact one of the injuries I incurred at the last fall is more severe and am still dealing with medical about the injury … sigh you just can’t have it all can you? Anyway I am very hopeful and excited that this is the treatment for me !! I still limp / drop foot- spasticity walk with a cane etc etc – but
    but I am walking – I work full time – and care my aging mom I feel blessed and thankful and immensely hopeful.

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