I'd previously thought I would have started chemo by now, but last Tuesday's oncology consultation brought news of a relatively new treatment (first performed mid-2024) that they're putting me forward for that I'm now waiting to hear if I'm suitable for. It's called electrochemotherapy, and in the UK it's only performed at Stoke Mandeville Hospital. Under general anaesthetic, and with x-ray guidance, they place needles into the spinal tumour, then pass a current through the needles that changes the behaviour of the cell membranes so the tumour cells are more receptive to the chemo chemicals that they then inject through the same needles into the primed tumour. I'll try not to get my hopes up too much yet, but it could really improve my prognosis if I'm accepted and it works 🤞🤞🤞
Personal Blogs
Possible new treatment
Not so bad after all 😊
The previous news that I had several new bone metastases turned out to be not so bad after all.
Even though there are new sites, they are very small and not even worth hitting with radiotherapy at this stage. Even the most serious, on my hip, was well away from both the ball & socket joint and the weaker narrow bridge between the ball and the femur, so not expected to be a problem for quite some time.
Since the Lenvatinib isn't/wasn't effective against the bone lesions, I'm going to start chemotherapy pretty soon: I've had blood tests and received an appointment for a consultation next Tuesday, so I expect they'll be starting the chemo very soon after that. Looking forwards to playing my eCorder for an hour or so while I'm hooked-up to the IV 😎
My back is nearly back to how it was before my hernia admission, so that's good. I realised it's over a year since my last physiotherapy session which I thought was to help me mobilise better after my bowel surgery, but was actually a few months after my GP had referred me for my back pain, but they didn't know about my L1/T12 spinal lesion that had been diagnosed since then and so couldn't risk doing anything back then. However, I was thinking recently that I bend my back when I transition from sitting to standing and when getting in and out of bed, so some degree of movement is obviously safe and not subjecting me to MSCC (malignant spinal cord compression). Consequently, I'm thinking that a senior/consultant physiotherapist armed with knowledge about my condition might be able to prescribe at least some exercises that would be safe but might improve my musculoskeletal back pain and reduce my need for painkillers (the GP currently prescribes me 7 boxes of 28 codeine tablets every 4 or 5 weeks, plus some tramdol inbetween). When I suggested this via the NHS app to my GP surgery I got a call within 30 minutes offering me an appointment next week so they can refer me - hurrah!!
I can't remember if I mentioned this before, but ever since having the devastating news a year and a half ago that my thyroid cancer had metastasised, I now really cherish everything that isn't crap news! Even neutral news is good! 🤗🌞. It's funny how life-changing news can change your disposition to the positive once you've got over the crapness of it. I actively seek out and find happiness far more than I did pre-cancer 😁
That's all for now, folks,
I'll update you when I know more
🖖(that's a Vulcan 'live long and prosper' ☺️)
New blog post
Hi all,
My back recovery started turning a corner yesterday when I managed my first day on less than maximum allowed dosage of painkillers, and last night I didn't need to come downstairs in the middle of the night for painkillers - hurrah with brass knobs on!!! 🥳. I will admit to being more than a little concerned about how bad my back had become whilst in hospital; apart from the initial ambulance trip and the first 12 hours, virtually all the morphine and IV paracetamol I had was for my back pain. However, it feels much closer to pre-admission levels where I only needed one or two doses a day to keep it under control.
I forgot to mention that Wifey brought my Faraday Y2 electronic recorder instrument in for the 2nd or 3rd night and it was fantastic. It really helped de-stress and distract me when pain or hospital noise woke me up in the wee hours, rather than just being awake and thinking about not being able to sleep. It has so invigorated my musical side that I ordered a new musical keyboard that should arrive tomorrow. The 'LinnStrument' has firm, square, silicone keys layed out in a grid with the notes increasing by semitones left to right and by a customisable increment (5 semitones by default) going up the rows, so similar to a guitar. The 'C's are backlit blue and the other whole notes green, with the sharps and flats unlit. this means the finger pattern to create a particular chord is the same anywhere on the keyboard. The most exciting thing, though, is that it is very expressive, registering downwards force (usually volume), left-to-right force (usually tone change, such as vibrato), and forwards-backwards force (often used for timbre change, such as bow position).
That's all for now, folks.
All the best,
Chris
Home for Christmas 🥳
Hi all,
I was discharged late afternoon on the day before Christmas Eve - Hurrah with Brass Knobs on!!!
Just when my bowels were appearing to work and I thought I'd be able to go home, they were concerned about infection markers showing up in my blood tests, so they put me on antibiotics, did another set of blood tests and kept me in overnight for observations. The infection markers must have either stayed the same or reduced as the let me out the following day.
Although my bowels/hernia situation is fine, the stay in hospital has really exacerbated my back pain and I'm on the maximum daily dose of painkillers at the moment. On Christmas Eve I walked to and from the chemist without having to stop for breathers/recovery in either direction, so my frequent mobilisation walking up and down the ward (including incorporating the practice stairs) obviously had a positive effect.
With my back the way it was and my reliance on the hodpital bed's electric adjustment to help me get up, I ordered a mobilty aid for me bed at home:
This was an absolute godsend; I don't think I would have been able to get out of bed without it.
I'm hoping my back will start to improve now I'm out of hospital.
That's all for now folks,
Enjoy the rest of your Christmas,
Chris*
(when I was little and writing Christmas cards, I use to be so intend on the writing I'd end up writing 'Happy Christopher'!)
Checking access to blog - part 2
Hopefully you can still access this when not logged into the system. Please be aware that any comments submitted while not logged in will need to be approved by me, so please bear with me if you don't see your comment straight away.
Ta, Chris
Checking access to blog - part 1
I'm about to make my blog accessible to everyone in the world, not just those logged in to the OU system. I think it has to be done on a per note basis. So you'll probably have been logged in for this one, but try accessing the next post without being logged in to see if you can still access it
Chris
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