Peter’s Hospital Diary

I was still in a bit of pain when I settled down, lots of gurgling but not much relief,  I had something to damp down stomach action and a bit more oromorph, which helped dull the pain, but of course did nothing to alleviate the underlying cause.

But all went reasonably well (although very broken sleep) until I woke at about 4 this morning feeling a bit sick – and promptly was 🙁 .  Nurses were great at a speedy bed change and once I settled down again, I felt much more comfortable, gripes had gone and I slept really well until 8ish this morning when the usual bloods, obs, breakfast routines started.  I’m not on a drip at the moment, so I’m not tethered to my pole and have a bit more freedom of movement!

And hot off the press, just as I was writing this, Dr Lown popped in with an update.

They are still waiting to hear whether the manufactures of Ibrutinib (Jansen) will supply the drug for me, and that decision is expected this week.  If the answer is yes, that is the route to go (it will take a couple of days to get it).

if the answer is no, then there are other options, localised radiotherapy to shrink specific nodes, but of course that is not a systemic fix.  But there are some new chemo protocols which have been developed and used with success in relapsed MCL.

And there is talk about discharging me as an inpatient and possibly starting chemo (if the Ibrutinib is not forthcoming) next Monday.  The chemo routines seem a standard 3 days every 3 weeks cycle.  Part of the decision making for that will depend on my latest calcium levels.

Meanwhile I will have another short course of steroids just to shrink them down again.

So movement and progress and therefore very much (yes, you’ve guessed 🙂 ) …

Onwards and Upwards!