Trust 'truly sorry for anxiety cause'”
A headline to stop me in my tracks today. First spotted by hubby via the Belfast Telegraph newspaper. But by this evening it had jumped up to a National headline on BBC news.
Remember the time I was put and left on anti seizure medication that ended up poisoning and almost killing me??....... Erm....... who was my neurologist?....... yep. Got it in one.
Head. Melted. What do I do with this information?? What does it mean?? Have I caused this with my complaint, in which I demanded an explanation for the ‘phenytoin poisoning incident’?
Learning from past mistakes and anxieties, I took some very deep breaths and I went on into work as planned. I won’t pretend I achieved very much as I spent most of the afternoon on the phone. But I stayed relatively calm and I tried to think things through rationally.
When I got home, I lifted out my Belfast Trust notes. And my notebook where I’ve listed all key events and appointments since very early on in this journey. Doing that helped me realise that, as shocking as this story is to read, it actually doesn’t change my position in terms of my health.
Large parts of my brain tumour were removed through surgery in Feb and March last year. This surgery was backed up by radio and a couple of chemo sessions. All of the scans and lab test results etc since then have shown no progression and an improved position in terms of my tumour. So this guy helped to poison me, but I was fortunate enough to have my local Causeway Medical Team of Consultants and Macmillan Doctor and Nurses. They saved my life by catching on to what was going on. Finding out he may have made mistakes should come as no surprise to me really. I’m starting to understand a bit better why my oncologist may not have been too pushed to get neurology involved in the Multi Disciplinary ‘Team’. If anything it simply strengthens my case against the Trust.
So I calmed my jets! Reminded myself I’m doing ok. I also rang the Helpline and asked for an appointment with the neurologist I was transferred to in July last year. I’d like everything checked please...... seems fair I think.
Of course this happens on the day I agree to reduce my steroids. After consultation with an expert nurse that I trust, I’ve taken the plunge and gone ahead with the next steroid drop, despite being a bit scared of what it’ll bring. We agree that I’ve been on them too long, that I want off them and that they’re doing me a disservice now. I’ve got just over 3 weeks before my sister’s wedding so I’ve gone ahead with my bi weekly reduction today. Then we’ve agreed a few week’s leaving things alone until after the wedding. Then we’ll start again and get me off them completely at long last. Which I’m delighted about!
I’d be lying if I didn’t admit to being a little nervous, but I’m also determined. Plus I’m not tied. It’s my body and my decisions and I can put the dose back up if I need to. I can also alternate between days if I need to. Let’s do this. Lets take more control back.
I remain horrified by how broken our health service is, but if anything this has forced me to read my notes, insist on review and actually be reassured by my current position.
Nothing has changed. I’m moving forwards...... I’m living with.....
xx
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