Home again

OK, time for a catch-up report (and to keep the records complete, as I’ll more than likely forget things if I don’t do this…)

On Monday 21 May, I went into the Newcastle Royal Victoria Infirmary (RVI) as planned to get set up with a nasal feeding tube. This had become unavoidable, as I’d reached the point where any time I swallowed the liquid food stuff, it was coming back up sooner or later (generally quite soon). This meant that I was getting little to no nourishment, was losing weight at an alarming rate, and looking very bad. On that morning, my weight had reached a low of  174.4 pounds (12 stone 6.4 pounds, 79.1 kg). Seriously, I don’t think I’ve been near that weight since I was a young skinny thing in the early 1980s.

Anyway, I arrived, had to sit in a waiting room for a while before being taken to my hospital bed, and a short time after that, I was taken down to the Endoscopy department where my consultant greeted me, sedated me and did endoscopy things which ended in inserting a tube up my nose, down my oesophagus and into my stomach.

Once I’d recovered from that and returned to my bed, I was set up for feeding. This involves a digital pump device, a bag of stuff (a relative of the Fortisip liquid stuff, only without the flavouring[1]) and a load of tubing known as a “set”. This connects to the end of the tube that’s sticking out of my nose, and delivers the stuff, which is referred to as “feed” at a controlled rate. Initially this was set to 20ml per hour – they started at a low rate to make sure I’d be able to accept it. This ran for twenty hours a day, which sounds like a lot, and it certainly felt like it. Fortunately, I was able to take the kit for a walk to have a wash and use the toilet, as it was all attached to a drip stand.

The next day, Tuesday 22 May, the rate was increased to a huuuuge 30ml per hour, and then to 35ml per hour when someone looked a bit more closely at the instructions.

Now I probably lost track somewhere, but at some point, I was switched from the lower concentration version of the feed to the full-power one, which comes in smaller bags.

Wednesday 23 May was much the same (as far as my addled memory can tell me).

On Thursday 24 May, I had my outing to the Freeman Hospital, which I’ve already reported on. And my feed rate reached the heady heights of 50ml per hour.

On Friday 25 May, I had a bit of a setback, when the increase to 75ml per hour seemed to have been a bit too much in one go, as it caused me to  :sick: in the early evening. So, for that night, it was scaled back to 50ml per hour again.

On Saturday 26 May, it was agreed that I’d stay in until Tuesday, so I could see the dietitian again before going home, and that we’d try a smaller increase the rate of feed. It seemed to work well enough with 60ml per hour. It also didn’t hurt that the number of hours had reduced to just 16 by this point.

By Sunday 27 May, I was setting up the kit myself rather than having a nurse do it – initially, this was done under supervision, but once it was clear I knew what I was doing, they let me get on with it, which was good preparation for using the system at home. And I was able to set the rate to 75ml without any issues.

On Monday 28 May, the rate went to 100ml per hour, with the duration down to just 13 hours, all without incident.

So, on Tuesday 29 May, I was deemed safe to release into the world, and that’s what happened. I was sent home in a taxi with a nurse to assist with my equipment.  That’s a pump, a small plastic stand (so I don’t have anything as awkward as a drip stand to manage at home) and an introductory supply of feed, tubing sets (you use a new one every day), syringes for flushing (more on that later) and err, that’s about it. But it was lots of stuff. By the time I’d got it all stacked on the kitchen worktop, I was ever so slightly tired. So, after watching a bit of TV, I took my pump to bed and got myself hooked up at the new rate of 110ml per hour, which started well, but did have a  :sick: some hours later. I turned it back to 100ml per hour for the rest of the session (just 12 hours!).

While I was in the RVI, a letter had arrived from the Freeman Hospital, giving a new start date for my chemotherapy – today. Now normally, I’m very flexible and cooperative when it comes to medical appointments, but I didn’t think this would be a good idea at all – I knew I’d need a few days to catch up on sleep and to be in a good state for anything, never mind actual treatment. Of course, I’d arrived home too late in the day to call the hospital to rearrange, so it would have to wait until morning.

This morning, Wednesday 30 May, I’d just shut down the feed thingy and was partway through flushing the tubes when the phone rang – it was the Freeman Hospital, confirming my appointment. I explained the circumstances and they agreed to reschedule.

I carried on sorting out the kit and began catching up with things when the phone rang again – this time it was the doctor I’d seen at the Freeman last week, who explained that the reason they wanted to start today was due to that original quick referral path that led me here – there are target dates and apparently today was one of those. I made it clear that I really wasn’t fit to start today, and that a few days would be needed at the very least for me to catch up on sleep and get a bit more lively. There was no trouble with this, and a few minutes later she called back to say that it would be rearranged for next week.

A few hours later, I had a visit from the Department of Work and Pensions, which involved me answering some questions while the nice lady filled in a form, which I signed. Apparently there’s a good chance that I’ll be eligible for regular benefit payments – I should find out in the next few weeks.

And err, that’s it. All up to date. But more to come….


3 thoughts on “Home again

  1. Keith

    Hope you get caught up on the missing sleep Les. Sounds like quite a balancing act with the feeding rate, but great news (for a change!) that your weight is on the up.

    Relieved the Freeman Doc agreed with the postponement – its not a perfect world. No need to book a gym session just yet then!

  2. John Etie

    The feeding regime you are on seems like a lot to get used to. Good thing you are so flexible and optimistic. When you aren’t being fed do you cap the tube off or something? Good luck with the chemo phase next week.

    1. Les Post author

      It’s pretty much settled into a routine now. And it’s now down to “just” ten hours each night.

      Not so sure about optimistic, just taking each day as it comes


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