Breaking the silence

Things have been quiet around here, mostly because I’ve been sitting at home taking my Ibrutinib and waiting for things to happen. Some things I’m still waiting for – the audiobook of Exile, the hardcopy of Nandor – but now I have significant news. My cochlear implant operation is to be on June 1st. Now this doesn’t mean I’ll have hearing back immediately; there’s a 4 week wait before it is switched on, and then the completely unknowable of how well it will work. But it is a bid step forward from where I am.

One week in

One week into the new treatment.

Last week was tough, particularly Thursday and Friday. My ankles got sore and swelled up, my knees got sore so that I could barely walk. I was prescribed a hefty dose of steroids which I started Saturday and which worked pretty quickly, by Sunday I was walking freely again. I have had no other side effects and the swollen glands in my neck have gone right down. Had bloods today and the key indicators are all heading the right way.

So far so good!

New Year – new sh#t

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This post will come as no surprise to those who caught my Facebook updates over Christmas and New Year. For those who did not let me summarise: things went very badly wrong!

My white blood cell levels crashed and I was twice admitted to Frimley Park Hospital with infections my immune system could not cope with. I have now been prescribed a new regime of chemotherapy with a single agent, Ibrutinib which I will start on Monday. This is a new treatment but everything I have read about it sounds very positive.

This inevitably meant that my cochlear implant surgery, which should have been yesterday, has been postponed until my white blood cell count improves. This may be several months, so I’m not going to be getting out to Cons, writing group meetings etc until the summer.

In other news: physical copies of Nandor, book 2 of the Nandor Tales, are now available. The e-book version has been out for a month or so, but there are as yet no reviews (hint!). The audiobook of Exile has been delayed due to the illness of the narrator, but I’m told it should be available in Feb.

Return to Nandor

The edits are done and the manuscript of ‘Return to Nandor’, the sequel to Exile, has been returned to my publisher. Likely publication date: ‘later this year’. When I have a more solid date I’ll post it.

The reviews for ‘Exile’ are starting to come in on Amazon and Goodreads; so far so good with one 5 * and an equal mix of 3* and 4*. Keep ’em coming please, reviews make a diference to sales.

 

Healthwise I’ve less to say. Last week’s appointment with the consultant was reassuring in that he has ruled out a couple of nasty complications that I could have had. However, they need further tests to decide the way forward. Hence I had a colonoscopy yesterday (not too bad, but the day and a half spent fasting and drinking the laxative solution was literally pretty sh#tty) will have another PET scan (tolerable) and possibly another bone marrow biopsy (not to be looked forward to).

I’m still deaf – though with the new hearing aid I can hear impact sounds (doors shutting etc) and can tell when people are speaking. This is more than before, if it continues to improve, I may restore some functionality.

 

Survived cycle 2 but….

The cost was high. Not only was I hospitalised for a week with a bleeding duodenal ulcer but somewhere in the middle of that I suffered a catastrophic inner ear hearing loss, possibly viral. The result; I am now deaf beyond the reach of hearing aids, I can hear nothing. I have been referred for cochlear implants which offer a modest hope of some hearing but right now, if you want to communicate with me you need to write it down. I’ve found reasonable utility from some of the voice recognition software on phones and tablets but mostly it is pen and paper.

 

This fairly clearly means I will not be going to writing groups and cons or presenting quizzes. So if this is where you know me from than this is why I’m not around.