childhood cancer

childhood cancer

Friday, October 21, 2011

Bins, insurance, hospitals and postcards

This might turn into a bit of a random mind dump, but bear with me, it all has a point somewhere.

Firstly, on the practical side of things, a thumbs up to Welwyn Hatfield Council this week.  Since Luke and Letitia came home, we have found that the amount of rubbish we are generating which is non-recyclable is more than our fortnightly collected wheelie bin could handle.  We emailed them on Tuesday explaining that we needed an extra bin, probably for the next year.  On Wednesday they emailed back saying they couldn't give us an extra one, but that they could provide one twice the size, usually reserved for large families.  Then, on Thursday morning when I went to work, they had collected the old bin (full of rubbish) and left a nice big shiny new bin in its place.  Excellent - one less problem to worry about.  We really were at the point of having to take a few bags to the rubbish dump at the weekend to make some space for next week.

Secondly, and we haven't yet fully confirmed this, so I'm not getting too excited, but it looks as though our critical illness policies on the mortgage give a small amount of cover if you have a child who is critically ill.  The policies wont pay out anything like their full value for a child, but it may be enough to make things a bit more comfortable with Letitia planning to have the next year off to be with Luke. As I said before, we planned this year of reduced income with Letitia on maternity leave, but never imagined her having a further period of unpaid leave, and my salary wont stretch far enough on its own to cover all the bills and allow us little luxuries such as food and heating.  I wouldn't really have thought the policies would cover us in this position, and was checking just to satisfy myself that we had explored all options, and it definitely looks likely to have been a good use of time.

Thirdly - its the weekend again! I feel like I haven't seen Luke this week.  With the couple of days away at the start of the week, the only times I have seen him have been at night when I do his drugs and top up feed trying desperately not to wake him up, and in the morning for a few minutes before I go to work.  If I can get on top of my sleeping patterns (and working patterns) again, then I can try to get up a bit earlier and spend half an hour with him before I go to work, but usually I am rushing to get ready and then running out of the door late. I'm in something of a vicious circle with it at the moment.  Anyway, all of that means I can't wait to spend some time with him tomorrow and Sunday.  We have a few family members passing by over the weekend as well, which will be lovely.  We are vetting everyone for coughs and sneezes before they can come in!

I called the hospital this afternoon to find out what the plan is next week.  Last we heard was that they were hoping to get Luke on a surgery list for Monday to put the hickman line back.  That was a couple of days ago.  I was putting something in my diary at work this afternoon and realised it was getting quite full early next week, and that it was Friday afternoon.  If I needed to change things around, then I needed to start doing that today.  So I phoned the hospital, and was told 'we were going to phone you this afternoon to let you know the plans'.  I am sure they would have, but whether it would have been in time for me to sort things at work out or not is a different matter.  Anyway, no problem as the surgery isn't until Thursday now.  He is booked, so all being well blood count wise, it will go ahead.  I have got a bit uptight about the delays before, and was a bit like that this afternoon, until I though about how well Luke is doing right now, and that a few more days before we launch him back into the hospital world will actually be quite nice.  If he was struggling with things, it would be a different story, but he seems to be better than he has for months, which is simply amazing.

Letitia and I started to talk about Christmas and other things in the future this evening.  I am finding it really hard to think any distance into the future for fear of what may be.  I think (hope) that once we are well under way with the treatment and can see the tumour shrinking and that things are really working, I will stop holding my breath and begin to think about the future again, but right now I can hardly focus on the next day or next week, let alone next month or next year!  Like people keep on telling me, its one day at a time....

I popped into Addenbrooke's this afternoon to pick up some spare NG tubes, as Luke is still pulling them out every two or three days, and our local hospital doesn't stock them.  They can put them in if Luke pulls one out, but they don't have any, so we have to bring our own.  Our last one was used yesterday, and when they said we wouldn't be back in until next Thursday, I thought there would be no way he would keep this one in until then!  I went to the Paediatric Day Unit to collect them, and they said Luke had been sent a postcard.  Some of my extended family from Guernsey had sent him a postcard having heard the news - a lovely surprise  and a lovely thought.  A little something that made me smile today.  It doesn't take much sometimes.

Have a great weekend - we intend to.

1 comment:

  1. Good luck with the mortgage policy. Hope you all have a fantastic weekend.