Personal Blogs

Hi all,

I managed to complete the six cycles of chemotherapy, but not without some more drama!
Between cycles 4 and 5 something changed and I had really bad back pain that required an ambulance trip, morphine, gas and air, and hospital admissions of four and five days with one day at home inbetween.

Although (and thankfully) my spinal column wasn't being compressed, I was still getting neuropathic pain from the bone lesions. After four days of tinkering they discharged me with twice-daily 10mg slow-release morphine and up to 2.5mg of oramorph up to 4 hourly for 'breakout pain' where the slow-release wasn't controlling things.

The following day the pain got worse again and was worryingly centred on the chest and radiating to the armpit: classic heart attack symptoms! After loads of tests including ECG, MRI, CT, x-ray, it turned-out the heart wasn't involved: those pain loci just happened to be pain from my T3 spinal lesion. After more experimentation, this time they discharged me with twice-daily 20mg slow-release morphine and up to 10mg or oramorphup to 2 hourly. Thankfully I've not needed either the amount or the frequency of oramorph I'm allowed, but it's reassuring to know it's there if I need it. The slow-release morphine seems just the right level that it keeps pain away the vast majority of the time but without getting me off my face on opiates!

The downside of needing the painkillers is that I can't drive any more, but this is a minor thing, particularly since I have my 60+ Oyster Card for free travel within the London Boroughs after 9am on buses and 9:30am on the tube on weekdays and anytime at weekends. 

I'm still working, but instead of my Mon/Wed/Fri arrangement I now have a much more flexible arrangement where my boss lets me work what I want (he's still keen on getting my input/involvement, and I still still love doing what I do). My boss even pays for an Uber or Bolt for my 22 mile commute on the days I physically come in to work (some stuff I can do from home via VPN).

Another not-so-great change is that I now wear a back brace when I'm not in bed. This provides additional support to the spine for where the lesions have weakened it. This is in addition to the 4-weekly bone-strengthening treatment I get. The biggest buggerance is that it is like a corset, so in this weather I'm sweating like a pig. I'll be much happier when the weather becomes cooler later in the year.

I'm still having fun and travelling into the centre of London for gallery and bookshop visits amongst other things. I'm looking forwards to the Carcassonne tournament to be held at the Mind Sports Olympiad next weekend, and in a couple of months or so there's the London Pen Show where I'll drool over fountain pens and associated paraphernalia.

That's all for now, folks,
All the best,
Chris

Hi all,

Sorry for the long wait - I keep waiting for something to happen to update you with, but it's only just got round to happening!

They didn't manage to get any reply regarding the electro-chemotherapy, so they're going to proceed with the standard chemo. My oncologist thought there were two forms of chemo suitable for my thyroid cancer, but one of them was more risky to the heart, so with my 35% heart ejection fraction (50%+ being the norm), they discounted that one. However, they then found out that the alternative chemo hadn't been offered in my health authority and it would need a treatment plan created together with supporting evidence... but there is very little evidence available. 

Consequently, it was back to the riskier option, but they needed to give me more tests including an up-to-date echocardiogram and CT scan. This showed my my previous 6 or 7 months of Heart Failure Clinic medications had improved my ejection fraction to 40% - hurruh! This convinced an oncology-specialism cardiologist to give the go-ahead to my oncologist to proceed with the chemo. It's called Doxorubicin and nicknamed the 'Red Devil' due to its deep red colour and significant side-effects including heart toxicity, hair loss and fatigue! They'll start me on a reduced 80% dose for the first 3 cycles, then give me another echocardiogram to check how the heart's responding. If all okay, they'll up it to the full dose. There'll be 6 doses in total, each 3 weeks apart. 

I've already had my first bone-strengthening drip. This helps strengthen the bone where the lesions have eaten into my vertebrae to reduce the risk of fracture. This has delayed side-effects which I experienced of flu-like muscle/joint pain and chills. I'll put up with all the side-effects of these treatments if they offer a better prognosis; I coped with and benefitted from the Lenvatinib while I was on that.

A couple of days after the CT scan I got a call asking me to come in the next day for tests and an MRI scan since the report showed spinal canal stenosis (narrowing). As before, this turned out to be be okay - yes, the canal was narrowed, but no, it wasn't compressing my spinal cord, so I'm not suffering the dreaded MSCC (Malignant/Metastatic Spinal Cord Compression) they were concerned about. Phew!

In myself, I feel fine apart from the usual back pain, but I have had a physiotherapy session to find peripheral exercises for my back which don't risk invoking MSCC, and the painkillers cope with the rest. I've been fitting in more gallery visits, went to the Science Museum last week (annoyingly exited the museum straight into the meeting point for the anti-far-right demonstration that buggered-up my bus back to the underground station), and am planning a Natural History Museum visit soon. I'm still working a three-day week, although I'm squeezing in an extra day this week as we have our laboratory accreditation visit soon and there's lots still to get ready. However, I'm looking forwards to putting the extra money to another Piccadilly Waterstones spending spree (with a mocha and some carrot cake in the cafe, obviously 😋). I tried the Charring Cross Foyles: it has more technical books, but lacks the comfy seating areas, so Waterstones remains my favourite 😎.

I'll let you know the chemo goes once that starts.

That's all for now,
All the best,
Chris
x or [manly hug/handshake] as appropriate

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' ☺️)

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'!)

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