Another day of sleep and no food.

Mathew woke up around 1 pm and partied on his iPad. Once John got home from work I made my excuses and tottered off to bed – a real bed, not the cot. It was heavenly. I am used to the cot and do sleep on it but oh, the luxury of a real bed! I had a good nap before I once again took up watch in Mathew’s recliner.

Mathew was nauseous today so he received a timely dose of anti-nausea medication. The day started him off with Zofran; that wonder drug known as the golden nugget at the hospital. It is expensive so if there is a good  chance of him barfing…well… I give him a good but cheaper alternative first. Bad me.

I did speak with Mathew’s nurse today and she is doing a visit tomorrow, to check in and to flush Mathew’s port. We discussed that cyst that continues to trouble Mathew and make his sleep restless. She is going to check into whether there is a topical lotion that will give him relief as the morphine doesn’t seem to help. How frustrating that it was just a lump for so long and now it is causing Mathew pain.

The bitter cold snap is ending and the weather is headed back to a bit of snow and freezing rain. Yay. The messy, lousy weather that is universally hated here. It is the season of slips, slides and filling up the ER with sprains and breaks. It is a good day tomorrow, for Mathew and I to stay put. Which is a good idea since he is too unwell to even want to go out.

I’m off to do a bit of reading on my iPad. I haven’t used my Kindle for ages since Mathew’s room is always dark. I still have the original Kindle, the one without a light. It is a bit hard to read in the dark… I have a subscription to Kindle unlimited, which is similar to a library. Amazon has a collection of books that you loan out, maximum of 10 out at any one time and thousands of titles to choose from. It costs $10 month which is what a paperback costs. It is a handy deal which I enjoy. Amazon and other sites also offer “sales” which means books for a dollar or two.

For those who are housebound the internet is an important lifeline. I did a lot of Christmas shopping online and continue to look for bargains and hard-to-find items by cruising the web. I read the news, catch up with people on Facebook and watch great shows on Netflix.  I keep up with the latest developments in Ewing’s Sarcoma research and in touch with other affected families.

Another important use of the internet is this blog. I can update every interested party here, for their read through at their convenience. I have logged on at every hour of the day and night without waking anyone up or calling at a bad time. It is more important now for these blurbs because Mathew just isn’t feeling so great. I worry that some people may think I am keeping him from their visits but by updating his day I hope to dispel any such notion.

Mathew is notified at each and every request for a visit. He makes the decision and has us pass the message along. He does post to Facebook and checks out family goings on, etc, as often as he can. Most requests for visits come to my iPhone or to our house phone. I always look for signs that Mathew can handle even a short visit because he enjoys them so much when he is up for it. The last visit, aside from his nurse, was probably a couple of weeks ago. That will unlikely change until he can eat again and sit up in his chair.

We still haven’t caught up on Riverdale, the tv show I mentioned earlier this week. It airs on Netflix on Saturdays so another indicator he is too tired right now.

Even though I had a nap earlier my spidey senses tell me I’m ready for bed too. I should say cot however since that is where I shall retire this evening. The cot has slats in it to hold the thin mattress and that thing hasn’t dumped me off or snapped off a slat in months. It makes a wretched racket when either happens and getting dumped on the floor isn’t fun for someone my age – my knees are finally protesting any contact with floors!

Good night.

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