More trips in the car

Making good use of the Motability car while we've got it, yesterday Pads ventured out to enjoy Star Trek 'Into Darkness', and today he went in the hot tub. The sub-cut (subcuticular or 'below the skin') needle which delivers analgesia needed taking out and a new one inserted in a different site. The previous site had started to go bad and he's still got pain and a big colourful bruise on his right hip from it. After an hour and a half with no pain relief going in it was great that Jane was able to drive to us at Ruth's and make the change. It was lovely in Ruth's garden and Padi's wit was spritely, even if his speech was slurred having become worn out by the excursion. We're getting used carrying him up the stairs. He's generally pretty awake between the hours of 12 and 8pm, but it depends what he's been up to.

Up with the lark

Thought I'd seen a ghost this morning but no, it was 8.30 and Pads was all set for his sleepover trip to Auntie Ruth's (including a dip in the hot tub - we use tegaderm to protect the fentynal patch although the hot water probably accelerates the release of drug... Anyway, it's a great way to get him washed!)
Moli's been off school for 2 days with a 'dizzy bug' but is showing signs of improvement now. They finally hit their fundraising target for the race last Saturday, which had to be abandoned after a couple of hours because the wind was so slack. Still, it was a rare opportunity for them and they generally had a great time together.

It's sarcoidosis

Message from Ruth:

The doc says I definitely have sarcoidosis - he had been very concerned that it was lymphoma, apparantly the one can masquerade as the other and vice versa. He is a very nice man, referred me on again.
So maybe you could put a link on the blog cos everyone's asking me what does it mean.

Job done :-)

Good news from Ruth

We were all much relieved to get a text message from Ruth earlier this evening to say that the Drs were certain she did not have cancer. They'll need another month or so to decide exactly what it is, but further diagnosis will rely on further tests, including a chest x-ray. The trip to hospital was a big ask for Ruth as she'd hardly moved since arriving home post-op last week... and she's got to make the trip again tomorrow!
Pads had a fairly busy day too. It was an ENT clinic in the morning and then the 2nd dose of radiotherapy. It passed off without any difficulties, although the imprint on his head from the mask was still visible an hour or more later...

Pads, Maelan and Ruth

Yesterday Pads mentioned school, wondering about when he'd go again. We've got no real expectations of that until at least the New Year, but even that is really quite ambitious. But just for him to be thinking about it was a sign of progress. He enjoyed half a mince-pie for pudding too, which is the first sweet thing (apart from tea) that's passed his lips since before the hi-dose chemo. He was very tired tonight going to bed. There were no medical interventions these past couple of days - it was front-loaded into the start of the week. He's got a lot next week though. Bloods taken and radiotherapy starting on Monday  for four days. Tuesday is ENT and Wednesday is audiology, plus seeing the consultant on Thursday.
Ally was able to attend Maelan's funeral today. He'd been battling leukemia for two years. He and Pads were very ill in hospital at around the same time recently. We felt a lot of sympathy and affinity with his family, as did many others who were also in attendance, including many staff and mums of cancer kids from Sky ward.
My sister Ruth had investigatory surgery to remove some lymph nodes on Wednesday. The location of the surgery is making her recovery more drawn out than anticipated - it's 'knocked her for six'. Spending days lying down is not like her at all. She's always so active in putting herself out for others - now it's time for us to help her.