Sunday, 13 March 2011

Gavin: This is not living

Sonny and I went to the RAF museum at Collindale today. Before we go we need to pack boiled water, meds and a crash pack. I took a pair of pants too, just in case. I wheeled him round amongst all the other families who looked guilty when they stepped out of the lift. When Sonny announced he 'was hungry' I shot to the cafe. The lone packet of hula hoops weren't right, so I was then hoping he wanted to leave soon so we could find him something. Tesco's was shut. Waitrose was shut. Sainsbury's on Upper Street was open but didn't quite have what he wanted. We bought some chicken slices and malt loaf. The chicken was wet and he didn't want it, so I cooked him some bacon and he loved it. I melted with relief. He wanted another slice but we knew he'd throw it up so I made an excuse. Zoe was out with Rubes as we need to make sure she's doing normal stuff. This means I don't get to see Zoe for most of the weekend and then it's back to work tomorrow. Now the kids are in bed we're sorting out his drugs and the logistics of getting him to UCH for 8am for his tranfusion. Ruby had diarrhea tonight so we're talking about what we do with that and keeping a watchful eye. We've poured a glass of wine but not too much as the car is packed with his overnight stuff just in case.
I just carried Sonny to bed. His legs are stick thin and his face is white with big red bags under them. He couldn't face cleaning his teeth as his NG tube makes him feel sick and, as he's just had eight syringes of medicine I couldn't risk it. I put his cream on his chest (to stop it flaking through radiotherapy) as he held his Hickman line out of the way. He said 'I had a brilliant day dad' and I said 'Yeah, so did I big man'.
This is not living.


  1. Keep your chine's up, you are doing so well as a family, Stay strong.

  2. Words are inadequate - my heart goes out to you all.

  3. What a day. We can't begin to even imagine it.We all send our love and hope for better days soon. Sue, Philip,Olivia and Rosa.xxxx