Hi Karen

Hopefully I can offer some helpful advise. Steve pre-diagnosis weighed roughly about 66kg. He stands 181cm tall. Very lean all of his life and never, ever a big eater. When he was diagnosed he was 60kg. The lowest he got during treatment was 51kg fully clothed in winter gear and boots. I still have visions of him walking around the house being excrutiatingly thin. A memory I don't think I will ever forget. During his treatment he had cisplatin 3 times. After he had cisplatin you could guarantee he would lose about 5kg in that first week. So we would spend the next few weeks getting him to put it back on again so he had it to lose all over again when chemo time came around. Boy was it hard work. The nausea he had after chemo knocked him big time. He never threw up but food of any kind (liquid or solid) just turned his stomach. There would always be a few nights following chemo that we would have to drop his feeds by a couple of tins.

Steve was on 2cal. Our schedule was to run the pump overnight while he slept and to try to get 6 tins into him. We didn't start straight away at 6 tins but built up to them bit by bit. It was time consuming so often he would curl up on the lounge in the afternoon to watch tv and I would get it all set up and whirring away. Then we'd just transfer it to the bedroom when he went to bed. Worked better for us to do it overnight because to have Steve forced to sit there for a feed of a day time was sheer torture to him. When he slept he didn't care. After chemo he'd drop back to about 4 tins for a bit, slower rate, until he felt a bit better. Also to try and add extra calories to his day he'd eat icecream. He seemed to live on just 2cal, icecream and apple juice for weeks. But it worked to get the weight on so it was worth it. When he was wanting to do nothing but sleep after chemo I'd hook up the pump with a bag of water and let it run while he slept. Keeping him well hydrated during treatment seemed to help with the nausea a bit.

Before Steve started treatment he was purely on a liquid diet. He was in too much pain to eat. The hospital put us onto Sustagen Hospital Grade and our dietician advised that by him having 3 milk shakes made from this each day it was the same nutritionally as 3 meals. When he was diagnosed we were living in Qld and we had to buy the sustagen. In NSW our dietician advised us that Sustagen Hospital Grade is free to head and neck patients so may be something for you to look into for Alex also. We stopped using it during treatment but before and still now Steve has it daily. The best thing is you can add to it. I put icecream into it, full cream milk etc. There were stages where I was even adding cream, custard, yoghurt, you name it. They were so good that when Steve went into hospital for a stay he refused the sustagen the hospital gave him because it just didn't taste as good as mine.

With the 2cal we had to pay for it but only a small amount. I think it cost us about $100 initially to set it up and then we payed a reduced amount. I can't remember exactly but I think 4 cartons (96 cans) of the stuff used to cost around $50 including bags for the pump. Our dietician refered us to this scheme and organised all of the paperwork for us. I can't remember the name of the service but I'll have a look tomorrow to see what the name of it was and let you know.

Anyway I hope this info helps. It's a tough road both you and Alex. Steve is very much not into food and I pretty much had to take control of that side of things. If I left it up to him setting up the pump and 2cal etc he would have had half the amount I think. There were many moments when we discussed (butted heads) over the amount of 2cal he was having. Sometimes I would step back and other times I wouldn't. But sometimes he just had to learn things the hard way. He's not a child so I would just say my peace then leave it at that. Sure enough he'd quickly come around to my way of thinking (most of the time, but not all lol).

As for the weight issue. We are 10 months out of treatment and still Steve hovers around the 58kg mark. No matter what we do he just can't seem to put on weight. His dietician told us that for some reason radiation treatment does something to your metabolism and it's very common for a person to always have problems keeping weight on. For Steve one missed meal usually spells 1kg lost in weight. Even now though he still has days where he gives me grief about eating. He knows he has to but I think a year of being told eat now, drink now etc just gets a bit much some days. If I'm not here to do make him lunch he forgets too. He calls it chemo brain He just doesn't get hungry. Never has really so trying to change a lifetime of habit of not eating much is incredibly hard and a constant uphill battle.

Anyway sorry for writting a novel but I hope it helps. Take care Karen, of yourself as well as Alex.

Wendy

Oh yeah, one other thing. If you are doing night feeds I strongly recommend a mattress protector that has some kind of water proof thing in it. Steve used to roll over of a night and pull his connection to the pump out in his sleep. 2cal in the bed was a common occurance. Sure can wreck your mattress too.