20 - 6 – 19

It has been quite a while . . apologies my friends. Thanks to those who have prompted me J I know some of you are checking the blog for updates on my (our) man.

Currently he is sound asleep. The power is out today for maintenance so the heater is off. Hopefully he stays asleep for most of the morning as it’s a tad chilly up here in the clouds and he doesn't have a lot of fat on him to keep him warm. (78 kilos now).

I love this weather as I get to wear layers of baggy comfy clothes and ugg boots with furry socks. We have gas to cook with so it’s plenty of coffee and soup for the day.

It’s been a bumpy few weeks. He was again dehydrated and malnourished a couple of weeks back. Trying very hard to get his feed in but he is so very nauseous it makes it difficult. Just the smell of any food makes him feel sick. He was missing a night here and there as well so he was not getting anywhere near the required nutrition needed to heal properly. We had advice from his Oncologist, Radiologist, Dietician, Speech Pathologist and the nurse who lives next door to us, . . . they all said “take him straight to the ED as he needs to be on a drip”. Well that's all fine and dandy with a willing human being. He simply would not go. No amount of pleading, crying, begging, angry words, patronising, whispering or gentle head stroking would get him to go. A blessing in disguise came one Monday morning in the form of a blocked tube. No amount of Coke would unblock it this time. Yep Coke. It’s what they use in hospital. That’s how nasty it is.

We went to Knox Private Hospital as they have an ED and it’s only 45 minutes away. Straight on to some fluids thankfully, I was so relieved. A fabulous nurse persevered and spent 2 hours unblocking his tube, yes with coke. Something to do with the acidity dissolving the caked feed. We enjoyed a lot of laughs with her, she was very funny. The hospital was full up so they arranged a bed at Ringwood Private just down the road. He was not at all happy being back in hospital, and kept saying “happy now” to me, but at least it was a really nice private room with a swisho ensuite. Very quiet too. Comfortable bed. I would have jumped at the chance for a few days rest there.

This whole feeding via a nasogastric tube seems to be foreign to most hospitals we have been to. No-one has the same equipment. Their feeding pumps are all different. Some tubes and syringes are imperial, some metric. Few people are qualified to put tubes in. If you need feeding bags or tubes they have to be ordered in specially. Frustrating for everyone involved.

He was on a fluid drip for the first 24 hours. I took in his feed and pump in the next day, Tuesday. I waited around for the doctor to come and see him as I needed to fill him in on what had been happening at home. We had a detailed record of the amounts of feed and water intake he was having, as his doctors had suggested. Especially his Dietician. I was mostly concerned about him coming home too soon and slipping back into the habit of not having enough of everything. I felt that staying in hospital for a week or so to get back up to a level of nutrition and hydration that was healthy was a good plan, put a bit of weight back on and get his nausea under control.

I spoke to his Dietician at this point and she said definitely a good idea for him to stay one week if possible. She remembers him not being truthful about the quantities he was having the last time he was at the Alfred and thus being sent home too soon. She is aware of his sneakiness. He will do anything to get sent home as he hates being in hospital. But going home too soon is not a healthy choice long term. I can’t care for him 24 hours a day. So Thursday comes along and I am still waiting to see the doctor. 6 hours I waited. The nurses assured me “he is on his way". Well I missed him again. At this stage he had been on feed for 2 days. Well hydrated and feeling fabulous apparently. So when the doctor came to see him that evening, he was told “sure you can go home". And home he came with a couple of friends who were there visiting him. I was livid. I had a meltdown, cried, yelled, felt so betrayed somehow. I am looking back at that moment now and trying to work out why I was so very very angry. It was because for about 3 weeks prior the advice we were given was to get him into ED now! His kidneys were in danger. His body and brain will suffer through lack of nutrition and fluid. Like his Oncologist said a few days ago “you will starve to death” if you don’t look after yourself properly. Why am I the only one taking this shit seriously . . . . This new doctor had no knowledge of what had been going on at home, he hadn't spoken to his specialists or his dietician, he was just seeing a hydrated man hooked up to his feed, taking all his meds. His vital signs were all good. Move him on. We have sick people here.

We have Private Health Insurance for a reason and this was a perfect time to use it. Stay in hospital you, start putting some weight on you, get into a good healthy regime of feed and water you, not just for 2 days, for a week, so that your body is used to it. Get your nausea more under control. Perhaps the Private Hospital could liaise with The Alfred and make sure the Plan is going to plan. What do I know? Who the hell am I? I am not a doctor, not a nurse, just a stressed out ball of poo who is sitting by watching this human fade away. I was told “you’re being silly" by someone recently . . . . well I challenge that person to put themselves in my shoes and then see how they might feel. When a loved one is fading in front of you, you get kinda desperate, and I am very emotional at the moment as you can imagine.

If your body needs X to just survive, then anything less than that is not acceptable to me. Ah well maybe I am just silly. Maybe I am just too overly concerned. Maybe my brain is just so fucked up at the moment.

Friday morning comes, the day after he came home, and his tube is blocked. He had put one feeding bag on the night before, and when the pump beeped in the night he was supposed to put another one on, or at least flush the tube with water. But he fell back to sleep poor love. So when he woke up many hours later it was properly stuck. We got through it. Coke to the rescue again. By this time he had missed out on all his meds, his water and his feed. He had that “please don’t say I told you so" look on his face. I'm not that mean. I didn't say it.

From there he slipped straight back into the same regime as prior to his hospital visit. I am just shaking my head at this point. I know it’s difficult, I know he is trying, I know he feels like shit all the time, I know he feels sick, I know I know I know.

What to do?

Thankfully he had an appointment with both his Oncologist and his Radiation guy about a week after this day, and his Dietician had been calling almost every day . . . . Dr. Grace was the one who mentioned starving to death. Prof. Sydney asked me if I had a rolling pin and that I should use it. He told “Mr. Mykolajenko” that he simply must drink and eat the required amount otherwise his kidneys will start to fail. He said he didn't want to see him for 6 months so just do what you are supposed to do “Mr. Mykolajenko".

After the appointments we were sitting in the waiting room, trying to speak to the Dietician as the pump had been playing up. Prof. Sydney called her and chatted for a bit, he informed us both that we had the amount of daily water intake incorrect. It wasn't 3 litres of water on top of the feed. It was including the 1.5 litres of feed. Holy fuck ! what a relief. He had always thought this amount was incorrect. He kept saying “how can anyone drink 3 litres of water in a day". Thing is, I do. And after numerous conversations over the previous months with Dieticians, Specialists, Doctors and Nurses, we were convinced that it was the right amount, mostly I was, no-one questioned it when we were admitted to hospitals or went to appointments and we told them how much he was supposed to be having.  So that was a huge relief to him. His target each day felt more achievable. I felt so awful. I felt responsible. I felt great and terrible all at once.

Fast forward to today . . . . he has a clipboard next to him with a chart that I have made up, to fill out, water, feed, small amounts by mouth. Yes he is having about 2 tablespoons of yoghurt or fruit and ice cream. A few sips of coffee in the mornings. He can swallow one of his tablets now, which is great. He even had half a sausage, a special request sent to the Kitchen Bitch. She put mashed potato and gravy next to it but that stayed on the plate. So he is trying. He sips water from a glass now too. He isn’t having as much feed and water as he is supposed to still . . .  I do check the chart, but I can’t force him can I . . . The Kitchen Bitch has a pantry full of food just in case something takes his fancy. She is a little pushy, but I like her style.

KB is off to a Face & Body Artists Retreat on Saturday for a few days. So he can have a break from her as much as she can have a break from him. The only thing that will stop her from going is if come Saturday morning he has slipped back into being dehydrated, then she will cancel going.

Cheers all, thanks for listening to my rant . . . . we will get there . . . FUPC