So there I am - I've completed the first round of treatment - radiotherapy with concurrent chemotherapy. Not without it's complications, but nothing major. I have apparently dealt with it all rather well, and so I have tried to reduced my steroid dose since I am feeling chirpy and ... well ... I'm feeling well!
My routine is out the window, so I have been distracted by all sorts of fun stuff - lots of lunches, manicures, my birthday spa day with my sister-in-law, wedding planning, completing my blogs etc. So have I been good about napping in the afternoon? Maybe not as good as I could. I have tried, but as my steroids have gone down, I have learned the art of sleeping through the night again, and so lying in bed at 3pm when there's so much to do has been hard.
And then it hits. This bottomless pit of exhaustion. They warned me I might get tired, but what went before was just a dress rehearsal. That was just because I wasn't sleeping properly. I'm too tired to clean my teeth. How I wish mum was back now.
And I paid the price for it yesterday.
I went to the docs to have a chat about this cough that I can't shift...and while I was talking to her I completely lost the power of speech. Literally, mid-sentence I looked at her in panic and tried to tell her that my right hand and arm felt like they were burning up and I couldn't feel anything. For a period of around 5 or 10 minutes I stayed like that, and then just as suddenly it disappeared. I was taken to the Nurses room while the GP phoned Neurology in Oxford and I phoned Wilson, and one of the wonderful Clinical Nurse Practitioners who provide brilliant support. She told me a number of things - firstly that the extreme exhaustion was to be expected and I didn't bring this upon myself; that it is not unusual in the period up to 6 weeks after radiation for things to swell up a bit and for the brain to respond accordingly. It was probably a partial seizure, I would probably need a CT Scan, and the outcome would likely be an increase in steroids and anti-seizure meds.
The GP returned, with an ambulance, and an instruction from Oxford to get a CT Scan as soon as possible from Reading. So off I went - with the same Paramedic who treated my ridiculous foot stunt a few weeks ago. Half way there, the flashing lights went on and we overtook Wilson in the car as the same thing happened again - about 4 minutes this time. As a result, we went straight into A&E, where it happened twice more.
The outcome - exactly as predicted. I had one more minor episode last night at home, but the increase in both meds appears to have to done the trick in as much as I haven't had any more partial seizures. Five in one day though, not bad, huh?!
Today, I am feeling some slight effects of dysphasia and some tingling in my arm. It's not huge, but it's definitely not where I was two weeks ago. You can probably tell - despite my careful editing and re-reading, I have probably missed some words and spelling in this post.
Great timing - I'm going for my "hen" tomorrow - which thankfully is a very quiet affair with my best friends. We've got Clare back in the UK for this one, but we've lost Emma who had a previous with her husband, three sons, bump and Easyjet. I know where I'd rather be tomorrow!
So, the good news is that the CT scan showed the tumour has reduced in size a bit, from 58x50x51mm to 53x44x37mm. And I couldn't be in a better set of capable hands tomorrow. I have spent the day in bed today in preparation, and the only thing I have done is complete these blogs and sleep.
Post wedding writing will be better!
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