Wednesday, 7 September 2011

IL-2 Week …

So we are back in Greifswald and Adam has now done three days of IL-2 injections. So far, so good. No fevers or adverse reactions. Similar, if not slightly better, than the first cycle; the real test comes later in the week as last time the temperatures, nausea and aching legs got steadily worse as the week wore on.

The journey out was, if anything, better than last time. Didn’t get off to the greatest start – our packing was a little too and we didn’t make it to the Eurotunnel in time for our scheduled departure. I don’t think Sunday afternoon/evening is their busiest time, the next two trains were cancelled and we ended up on the 17:52. Having said that it meant the timing was spot on to have tea in the camper van whilst we made the thirty-something minute crossing.

We decided before we left that we’d push on further on Saturday this time round, to leave less of a journey on Sunday. I booked a hotel just the other side of Eindhoven (Hotel Nobis). We got there just after 9pm (CET); the hotel was perfect, literally two minutes from the motorway. It was very nice – we had a triple room with a double bed, separate (permanent) single bed, and large bathroom. I’d booked on the internet and the rate it had given me for 2 adults and 1 child sharing was in fact  the standard double room rate, causing some vexation at the check-in desk as triple rooms were supposedly more expensive. But as it was there in black & white there wasn’t much they could do about it. Needless to say I’ll be using the same website to try booking the same hotel next time as well!

We didn’t make a particularly early start on Sunday morning; by the time we’d eaten breakfast (in the car park!) and topped up with diesel at the garage adjacent to the hotel, it was gone 10 o’clock. The remainder of the journey, 450 miles or so, was as easy as could be (though we saw some horrendous traffic jams on the other side of the motorway that we hope we don’t come across ourselves on the way home). We made such good time that we didn’t even stop for tea, arriving at the hospital to pick up the key to our room in the parent’s house just after 6pm. As we drove up the approach road I casually asked Alison whether or not she had actually confirmed that we had a room. “No” she replied “The same thought just crossed my mind.” We’d been entered into the diary before we left after the first round, and we’d not heard anything since.

Ten minutes later Alison emerged from the hospital and walked back over to the van. Her first words were “Now don’t be cross with me, but they haven’t got a room for us at the parent’s house. It’s full.” Adding quickly “But they’ve said we can sleep in the hospital tonight”. So that’s what we did. We cooked up tea in the camper van in the car park of the hospital, I got bitten to buggery by mosquitos as night began to fall, and then we all went up and slept on the ward. As it turned out spending Sunday night in the hospital made for a fairly relaxed start to Monday morning. We didn’t have to get up, ready and off to the hospital early – we were already there!

Another family from the UK who are also on round two of antibody therapy, but a week ahead of us, very kindly volunteered to give up their room at the parent’s house and move all their stuff into the hospital. Normally only one parent is allowed to stay at the hospital, and the other sleeps back at the Elternhaus, but in this case the hospital were more than happy for Family Edwards to all stay there. And Family Bird were most grateful indeed. So we now have a room at the Elternhaus, though only until Friday for definite (I don’t understand the whys and wherefores so don’t ask). After that we might be in the parents house still, or maybe the hotel, or possibly the hospital. Or, if all else fails, we’ll be sleeping in the van in the hospital car park.

We brought a portable freezer with us this time so we could make sure we had as much ‘normal’ food as possible to give to Adam, especially during this first week when his appetite is still relatively good. We also bought an extra six cartons of fresh goats milk as it’s the one thing that we’ve found completely impossible to buy out here. Other than in porridge Adam refused to have the long-life stuff last time.

I think we’ve prepared as well as we could have, the only thing we forgot to bring that we’d intended to was a pushchair/wheelchair. It would have made things (much) easier at times if we’d had one during the first cycle, but now we’ll just have to make do without it again. Our job for next week, when Adam is on antibodies, is to keep him moving around better and more often so hopefully we don’t let anything settle on his chest and cause more problems once we get home again. I’m hoping they’ll lower the morphine sooner – although he stayed pain-free last time he was also so sleepy and out of it that it was almost impossible to get him to do anything apart from an hour or so during the morning - when he did at least have a reasonable breakfast most days.

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