But I only seem to manage a few pages at a time. My main job today is to rehydrate. I can only sip water, and it is quite painful. I am unable to get enough fluid in by mouth. Thank goodness I had the PEG feeding tube put in last week, and thank goodness it went well, as I have meet a couple of people who who got infections and had a very painful time with it. Mine was done in the Rotorua Hospital thanks to the madness of regional Health Boards and their funding streams. I had to have early radiation on Thursday morning, 7.00am, and then travel to Rotorua for a 10.30am hospital admission. An overnight stay and then straight back to Hamilton for 10 minutes on the table being zapped, and finally back to my little house Friday afternoon. My sister Deborah was here last week so she did the driving. Nil by mouth for most of Thursday was not what I needed. On the way to Hamilton I made Deb buy me some tubes of baby food. She did well, she chose organic vege with beef - and I can tell you that stuff tastes dusgusting (as we say in NZ). Then I tried a muffin at the Italian bakery in Tirau, and found the only way I could manage a couple of mouthfuls was by pouring milk over it. I couldn't even drink my cup of tea. A strawberry ice cream hit the spot, but I am tying to avoid sugar, not just because sugar feeds cancer, but because of the thrush in my mouth.
So although no one had instructed me on how to use the feeding tube I started using it on Saturday. Deb bought supplies of Fortisip and I worked out what to do. I couldn't find any advice on how many to have in a day, but I had an appointment with the dietitian yesterday and she says I need 6 a day. She worked some magic and bingo, 2 cartons of the stuff were delivered to my room at the Lodge last night - basically free of charge. Sorted! I'm using a big fat syringe to put it down the tube but later on I can have a stand that will drip-feed nourishment and fluid in overnight.
It is really hard to talk because of ulcers on the sides of my tounge and having a mouth full of thick saliva, plus opening the mouth and moving the tongue is becoming more difficult as the radiation affects those joints or muscles or whatever it is is that creates the articulation for speech and swallowing. So I got back to Hamilton this week on the shuffle bus, mumble mumble. Will I need to tie a slate around my neck? Then if I got cross, I could scratch it. I have been warned to keep sipping water so I don't forget how to swallow. Apparently it really, really hard to relearn. So even though plain water tastes disgusting and hurts, I need to keep sipping.
It is relatively early on to be getting this breakdown in my mouth and I wonder if 5 years on the rheumatoid arthritis drug isn't the reason, as I already had a dry mouth and impaired taste. I have morphine now for pain relief - well I Have it, I have not taken any yet. Mild sedation might be a fine thing.
Just to complete the picture, I also have a red spotty neck which makes the soft cotton sheets on my bed feel like the fabric has turned to hessian.
While I was in the Rotorua Hospital, I had some wonderful conversations. Part of the new me is that I talk to strangers in waiting rooms and corridors. Three of these conversations had a common theme which was how to revitalise local marae, and in particular the importance of the marae as a knowledge repository. And all these people, even the lovely Katarina from Minginui who is in her 80s, agreed that the stories and histories need to be recreated in digital formats to engage the mokopuna.
Well my friends, I'm off now to take in a few more syringe-fulls of water. I shall visualise it as being as refreshing as the waters of Hamurana Springs
No comments:
Post a Comment