Hywel
Following over two months of being fed through a stomach tube, I feel I can pass on what life is like not being able to eat food. In a word - crap. It’s a massive life changer that has huge implications on your daily world, the effect of which is difficult to pass on in words.
As a family it has always been a tradition to eat around a table. We’ve never eaten in front of a TV. Having always lead extremely busy lives, it was a breath of fresh air to end the day sitting eating good food, and chatting about the day’s events. I used to look forward to it immensely. Now, whilst the rest of the family is eating I’m hooked to a machine which dispenses magnolia colour paint through a thin tube into my stomach over a period of hours. I’ve gotten use to it - finally. There have been times when I’ve felt so down I could gladly have pulled the tube out of my stomach and been done with life. I’ve had an infection in the entry site for virtually the whole time and that has also been difficult to deal with. It’s not pleasant watching stomach acid leak out of the pipe when trying to hook various implements up.
Having a PEG has changed our social life completely. We simply cannot go out for a meal anymore for obvious reasons. You can just picture the next romantic meal I have with Cathy. Candles lit, bottle of wine open and the starter course comes. Cathy tucks in with fancy fork and knife whilst I put a mouthful in, savour the taste and spit the contents out into a plastic bag. The look of horror on the waiters and customers’ faces would be a moment to savour. “Food not to your liking Sir?” “Oh no, it was delicious thanks, can’t wait for the main course.” He brings me a few more bags for the later plates, and therein lies my romantic meal for two.
I need to get 2000 calories of food down me a day and ideally around 2.5 litres of water. This is almost impossible unless I’m strapped to a machine all day. Quality of life? Don’t think so. We have been out to a few tea houses for a cuppa which has been nice but it simply isn’t the same anymore. I miss the social interaction of a meal with a group of people. As if cancer isn’t enough of a social spoiler already.
Our house looks like a pharmacy inside, bottles of food and tubes everywhere. The previous chemist we used were a nightmare to deal with, refusing to give me anything but vanilla flavoured bottles and shouting at Cathy down the phone at the slightest thing. It was run by the wicked witch of the East. We could easily compete and use our medical supplies for a rival pharmacy with better customer services.
They say you can get used to anything in life and that’s possibly true. The fact of the matter is that it’s getting harder every time for me and I wonder what’s next.
Cathy
Hywel’s gradual loss of the ability to swallow anything other than liquid has been really hard for us all. I’ve always enjoyed cooking for my family. It’s about the only creative skill I have and I’ve always insisted we have a family evening meal together. When we were both working full time and Adam and Elliott were at school we would always do this so that we could have family catch up time and chat in a relaxed atmosphere. Carly and Luke would regularly join us for meals when they were younger and even since they have grown up and started working themselves a few times a month they would come and eat with us. Two of my brothers have restaurants and we would often go to them for big family get togethers where the wider family would eat and drink together. My Mum’s second husband was Italian and they opened the first Italian restaurant in Cardiff back in the 70’s. As a result, eating together has been a big part of our family dynamic.
As Hywel’s swallowing deteriorated he tried to sit with us and have some soup or some mashed food and gravy, but he found it frustrating that he couldn’t eat what the rest of us were eating, plus it was a painfully slow process for him, he would regularly cough and struggle to get food down. Elliott constantly worried that his Dad was choking and we felt terribly guilty that we could eat and Hywel couldn’t. I stopped proper cooking as it was just me and Elliott and he doesn’t enjoy the same kind of foods that Hywel and I do apart from a few meals. So a lot of the time I have been making Elliott something quick from the freezer after school and I just have toast or sandwiches or a ready meal, something I can prepare and eat quickly when Hywel is resting or having a feed through his tube. Adam came home four weeks ago from University so he has tried out some of his new cooking skills on me and Elliott. Luke has been spending a fair bit of time with us too so it has given me the impetus to do a bit of cooking again with a few more people around to enjoy it. I can’t shake the feeling of guilt though when I eat a proper meal and I expect I’ll revert back to ready meals and sandwiches when Adam is back at Uni and Elliott is back in school after the Easter break.
Myself and several people have suggested that Hywel tastes food and spits it out before swallowing so that he can still get the taste and texture of food, but he has steadfastly refused to do this. After the hot dog sausage incident he is very afraid to eat anything and he just doesn’t like the idea of spitting the food out. We can go out for a cup of tea, the odd cappuccino or hot chocolate, but sadly restaurant meals together are not possible.
We are much more practiced at using the syringes to deliver the food (bolus feeding) through the feeding tube now. The feeding pump is pretty good if we are not going out anywhere and Hywel feels like sitting and watching TV for a few hours. When he started to need to take his feed through the stomach tube Hywel didn’t want to do it himself and I would do the feeds for him, but now that we are better at it we do it as a team! I get all the syringes ready and make sure there is water, paper towels a towel and any liquid medications ready and Hywel syringes the stuff in, it’s a bit messy as the syringes only hold 50 mls of fluid at a time and each feed is 200ml (it’s a bit like milkshake and comes in varying flavours and colours) so the syringe has to be filled 4 times. I then clear everything away and wash the syringes and cups and leave them to dry ready for the next feed. Syringing the food and medicines in takes 5 to 10 minutes, the clearing up and getting stuff organised 10 minutes or so. The pump is less messy to organise as the liquid is in a 1litre bottle that gets attached to a pump and a tube called a giving set runs from the bottle of liquid through the pump and is then attached to Hywels feeding tube. Liquid is then pumped into Hywel’s stomach at a regulated speed over a few hours. We have found using a mixture of the two methods (bolus and pump) gives us a lot more flexibility. If we have a lot on in the day Hywel will have bolus feeds a couple of times and then set the pump up for a few hours in the evening. When Hywel is having chemo and has his worst days I can set up the pump so that he has food and fluid slowly through the day, and on the couple of days when he can’t manage feeds at all I can run water slowly through his feeding tube using the pump to keep him hydrated.
The downside of the PEG is that mealtimes are not the enjoyable occasions they used to be for our family, but the upside is that having the tube fitted is keeping Hywel properly nourished. It takes the pressure off him trying to swallow and eat high calorie food to stop himself becoming malnourished and less able to cope with his treatment.
Following over two months of being fed through a stomach tube, I feel I can pass on what life is like not being able to eat food. In a word - crap. It’s a massive life changer that has huge implications on your daily world, the effect of which is difficult to pass on in words.
As a family it has always been a tradition to eat around a table. We’ve never eaten in front of a TV. Having always lead extremely busy lives, it was a breath of fresh air to end the day sitting eating good food, and chatting about the day’s events. I used to look forward to it immensely. Now, whilst the rest of the family is eating I’m hooked to a machine which dispenses magnolia colour paint through a thin tube into my stomach over a period of hours. I’ve gotten use to it - finally. There have been times when I’ve felt so down I could gladly have pulled the tube out of my stomach and been done with life. I’ve had an infection in the entry site for virtually the whole time and that has also been difficult to deal with. It’s not pleasant watching stomach acid leak out of the pipe when trying to hook various implements up.
Having a PEG has changed our social life completely. We simply cannot go out for a meal anymore for obvious reasons. You can just picture the next romantic meal I have with Cathy. Candles lit, bottle of wine open and the starter course comes. Cathy tucks in with fancy fork and knife whilst I put a mouthful in, savour the taste and spit the contents out into a plastic bag. The look of horror on the waiters and customers’ faces would be a moment to savour. “Food not to your liking Sir?” “Oh no, it was delicious thanks, can’t wait for the main course.” He brings me a few more bags for the later plates, and therein lies my romantic meal for two.
I need to get 2000 calories of food down me a day and ideally around 2.5 litres of water. This is almost impossible unless I’m strapped to a machine all day. Quality of life? Don’t think so. We have been out to a few tea houses for a cuppa which has been nice but it simply isn’t the same anymore. I miss the social interaction of a meal with a group of people. As if cancer isn’t enough of a social spoiler already.
Our house looks like a pharmacy inside, bottles of food and tubes everywhere. The previous chemist we used were a nightmare to deal with, refusing to give me anything but vanilla flavoured bottles and shouting at Cathy down the phone at the slightest thing. It was run by the wicked witch of the East. We could easily compete and use our medical supplies for a rival pharmacy with better customer services.
They say you can get used to anything in life and that’s possibly true. The fact of the matter is that it’s getting harder every time for me and I wonder what’s next.
Cathy
Hywel’s gradual loss of the ability to swallow anything other than liquid has been really hard for us all. I’ve always enjoyed cooking for my family. It’s about the only creative skill I have and I’ve always insisted we have a family evening meal together. When we were both working full time and Adam and Elliott were at school we would always do this so that we could have family catch up time and chat in a relaxed atmosphere. Carly and Luke would regularly join us for meals when they were younger and even since they have grown up and started working themselves a few times a month they would come and eat with us. Two of my brothers have restaurants and we would often go to them for big family get togethers where the wider family would eat and drink together. My Mum’s second husband was Italian and they opened the first Italian restaurant in Cardiff back in the 70’s. As a result, eating together has been a big part of our family dynamic.
As Hywel’s swallowing deteriorated he tried to sit with us and have some soup or some mashed food and gravy, but he found it frustrating that he couldn’t eat what the rest of us were eating, plus it was a painfully slow process for him, he would regularly cough and struggle to get food down. Elliott constantly worried that his Dad was choking and we felt terribly guilty that we could eat and Hywel couldn’t. I stopped proper cooking as it was just me and Elliott and he doesn’t enjoy the same kind of foods that Hywel and I do apart from a few meals. So a lot of the time I have been making Elliott something quick from the freezer after school and I just have toast or sandwiches or a ready meal, something I can prepare and eat quickly when Hywel is resting or having a feed through his tube. Adam came home four weeks ago from University so he has tried out some of his new cooking skills on me and Elliott. Luke has been spending a fair bit of time with us too so it has given me the impetus to do a bit of cooking again with a few more people around to enjoy it. I can’t shake the feeling of guilt though when I eat a proper meal and I expect I’ll revert back to ready meals and sandwiches when Adam is back at Uni and Elliott is back in school after the Easter break.
Myself and several people have suggested that Hywel tastes food and spits it out before swallowing so that he can still get the taste and texture of food, but he has steadfastly refused to do this. After the hot dog sausage incident he is very afraid to eat anything and he just doesn’t like the idea of spitting the food out. We can go out for a cup of tea, the odd cappuccino or hot chocolate, but sadly restaurant meals together are not possible.
We are much more practiced at using the syringes to deliver the food (bolus feeding) through the feeding tube now. The feeding pump is pretty good if we are not going out anywhere and Hywel feels like sitting and watching TV for a few hours. When he started to need to take his feed through the stomach tube Hywel didn’t want to do it himself and I would do the feeds for him, but now that we are better at it we do it as a team! I get all the syringes ready and make sure there is water, paper towels a towel and any liquid medications ready and Hywel syringes the stuff in, it’s a bit messy as the syringes only hold 50 mls of fluid at a time and each feed is 200ml (it’s a bit like milkshake and comes in varying flavours and colours) so the syringe has to be filled 4 times. I then clear everything away and wash the syringes and cups and leave them to dry ready for the next feed. Syringing the food and medicines in takes 5 to 10 minutes, the clearing up and getting stuff organised 10 minutes or so. The pump is less messy to organise as the liquid is in a 1litre bottle that gets attached to a pump and a tube called a giving set runs from the bottle of liquid through the pump and is then attached to Hywels feeding tube. Liquid is then pumped into Hywel’s stomach at a regulated speed over a few hours. We have found using a mixture of the two methods (bolus and pump) gives us a lot more flexibility. If we have a lot on in the day Hywel will have bolus feeds a couple of times and then set the pump up for a few hours in the evening. When Hywel is having chemo and has his worst days I can set up the pump so that he has food and fluid slowly through the day, and on the couple of days when he can’t manage feeds at all I can run water slowly through his feeding tube using the pump to keep him hydrated.
The downside of the PEG is that mealtimes are not the enjoyable occasions they used to be for our family, but the upside is that having the tube fitted is keeping Hywel properly nourished. It takes the pressure off him trying to swallow and eat high calorie food to stop himself becoming malnourished and less able to cope with his treatment.
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