Archive | August 2012

Sunny(!) wedding in Glandore, County Cork

And despite the torrential rain on the way down to Cork, on Monday 27th the clouds parted to set a glorious scene for Matt and Nuala’s wedding in The Rectory overlooking the beautiful fishing village harbour of Glandore.  It rained the day before, it *belted* it down the day after, but the day itself couldn’t have been better.



We spent some time exploring as well and headed out to Mizen Head, Ireland’s most south-westerly point.  I was amazed by how luxuriant the plant life was, with flowers bursting out of the hedgerows and palm trees lining the coast.  Admittedly the palm trees were getting a good bending from the enthusiastic Atlantic breezes, but that just added to the vital freshness of the scene.




On our last full day in County Cork we visted Inchydoney beach just outside Clonakilty, where Paul burnt off what energy he had left after his antics on the wedding dance floor by flinging Felix about.




And finally on our last day, we got to see Cashel, stopping off for a lunch break there on our way back to Dublin.


Crap start to a great break in Ireland – Thanks to Thrifty!

Having finally escaped from Southampton General’s clutches, this morning we flew to Ireland to go to Matt and Nuala’s wedding down in County Cork.  The journey didn’t start well – our 6.45am flight from Southampton to Dublin was delayed by a couple of hours and then when we got to Dublin, Thrifty Car Rental cocked up so spectacularly that it was 5 (five!) hours after the time we had booked (8.30am) to take our hire car that they finally managed to hand me the keys (1.30pm).  I still haven’t quite understood why they had such problems, but the office out at the compound where you collect the car was in chaos, and at times they seemed to know which car they wanted to give us, but couldn’t find the keys, and at other times it was less clear if there was actually a car for us at all…

Perhaps with hindsight the clue is in the name (and I did choose them because they were the cheapest), but be warned folks…

We had planned to stop off in Cashel on the way south, but a) didn’t have time after the delays and b) it was hammering down with rain, so we just kept on going.


An unexpectedly brief visit

And having been let out of Southampton General less than 24 hours ago, I was back again this morning for the last (4th) dose of Velcade of my second cycle.  After an eventful week at the hospital, this session was remarkably quick.  The chemo day ward was very quite and so there was no waiting around, so I was in and out within 20 minutes or so.  I didn’t hang around in case they found some reason to ask me to stay a little longer…


Just one little telephone call…

On Monday 20th August both Andrea and I were off work with some kind of bug we’d picked up.  Nothing major, but we had a kind of ‘flu-like lethargy and general achiness that parked us both on the sofa for most of the day.  Towards the evening, it occurred to me that my night’s sleep might be improved by taking a paracetamol or an ibuprofen, but I wasn’t sure if I can take either of these on top of all the other pharmaceuticals I pop daily.  So I gave the chemotherapy advice number a quick ring to check…

After a few questions, and a temperature measurement, I was asked to come in to the hospital for the night.  So I packed a bag, got dropped off at the hospital and settled in to an evening of being poked, prodded and tested in D3 ward (one of the main cancer care wards at Southampton General Hospital).  I was also started on some broad spectrum IV antibiotics.  They finally left me alone at around midnight, though with the curious possibility that I might be taken for a chest x-ray “some time overnight”.  Fortunately they left me to sleep and the chest x-ray happened the next day (and was entirely clear), when I was also moved to C6 ward (the leukaemia and bone marrow transplant ward).  This was an interesting preview of the ward where I’ll be when I have the high dose chemo and stem cell transplant later on.  The facilities are excellent, in particular in the new section of the ward.

Despite the quality of the accommodation, I was hoping to go home, but the registrar said that they wanted me to stay in for another night to be sure that my temperature had come down entirely.  Also, with Friday being the last (4th) Velcade treatment day of my second cycle of chemo, they were keen to get me as recovered as possible beforehand, to avoid the chance of that last dose of Velcade not happening.  I was also still being given IV antibiotics, with a saline drip (including extra potassium), so I had the fun of wheeling my drip stand around after me (including for night time visits to the bathroom) which took a bit of getting used to, and not until I’d got into a few textbook amateur tangles.

So by Wednesday I was pretty sure I should be able to go home, and certainly felt OK.  It was a bit of a surprise then to be told that I had to stay in for yet another night.  I was also moved out of the individual (isolation) room and into a shared 4-bed ward (though with only one other patient) for Wednesday night.  At least by now I was only on oral antibiotics.

Finally, come Thursday morning, having had no sign of a temperature for over 24 hours, the registrar said I could go.  The further delay though was waiting for a bunch more pills (including some antibiotics) to come from the pharmacy.  After waiting for a couple of hours, I gave up waiting, checked out and went back to work.  I picked up the pills that evening.

Perhaps a little naive of me, but this wasn’t the outcome of the “can a pop a paracetamol” telephone call that I was expecting.  The blood values listed on my discharge paperwork do seem (to my eye) to suggest that my immune system probably isn’t firing on all cylinders, so perhaps understandable that they wanted to be cautious with me…

Area man in shock puzzle doping scandal

Here’s a funny side effect for you.  I take dexamethasone (a steroid) on Friday and Saturday mornings when I’m on a  medication week of the cycle.  So I don’t sleep for very long on a Friday and Saturday night (and tend to crash a bit on Sunday afternoon and Monday).  I’ve got used to this effect (as previously documented here) and I’d generally noticed that on Friday afternoon and Saturday I do tend to be quite “focussed” on what I’m doing, but I’d not really seen any specific benefits.

This morning I was wide awake at about 5am (having grudgingly gone to bed at 1am), and opened up the Guardian Crosswords app on my phone.  I tend to dabble with the Guardian cryptic crossword, but it’s extremely rare that I find the time or the insight to finish a puzzle.  No such trouble this morning in the wee hours.

This was a puzzle that I’d previously completed about half of, and got no further.  The really weird thing is that (other than being wide awake so early) I didn’t feel any different, except that those clues that I’d previously got stuck on just seemed easy.

Ps. For those of you not in the know, “Area man in…” is a reference to The Onion – America’s Finest News Source

First light-chain results back…

Yesterday I got the results back from the blood sample that I sent off in the post at the end of my first cycle of chemo.  So it got there OK then.

The results show the same level of lambda light-chains as were measured when I visited the National Amyloidosis Centre in May, namely at the rather impressively high level, so I’m told, of about 13,000 mg/l (i.e. I’m busting the traditional choice of units and would be better expressing it as 13 g/l).  I still can’t quite get my head around the idea that there’s so much of this junk flowing round in my blood.  I mean 13 g in every litre (0.8 oz in every pint) of blood must be enough to thicken it, surely…

I spoke to my consultant at the NAC today who assured me that it probably wasn’t to be expected that we’d see much decrease after only the first cycle.  One reason for this is that between the first measurement in May and the start of chemo at the end of June the level may have carried on rising, so a similar value to May now could actually demonstrate a reversal of that increase.  The other is that at these very high levels of light-chains are too high to be accurately measured by the light-chain assay, which actually tends to return a result like “> 13g/l”, so it’s also possible that some decrease has already occurred yet it’s still in the range that the assay can’t quantify…

So, carry on with this (2nd) cycle and the ones after that and watch this space….