24 May 2019.
LOTS OF CATCHING UP TO DO.
HERE GOES...
So things are supposed to get easier?
OK kids, I've been diagnosed with cancer at the base of the tongue in my throat. Not a good thing, but every medico I've spoken to has been extremely positive and told me it is totally curable with treatment.
I'm not shopping for sympathy, but I'm not much of a talker about private stuff (much to Suzanne's dismay) so I'm writing this the keep family and friends up to date, and save you all a bunch of phone calls and emails. Maybe this will also help out someone who might go through the same thing somewhere down the track. It's always good to get the story from the horse's mouth, even if his tongue is a bit munted. 😃
It's been a while since my past update, but I just haven't felt kike doing anything but sleeping for a while.
All of my treatment is now complete. No more chemotherapy, and no more radiotherapy. I walked out of the last session feeling pretty pleased with myself.
I still can't swallow anything, water included, because of the pain so I'm still getting all my nutrients from my naso-gastric tube, a tube that goes up my nose and down into my stomach.
That's great idea...but if the tube gets blocked, it has to be replaced, not a very nice experience.
I woke up one morning, disconnected my feed bag, and went to the toilet. I would normally run two or three large syringes of water through the tube to keep it clear when I take the food gag off. As I walked back past the bed I decided I just have a little nap. I woke up a few hours later, and the tube was blocked. We tried a number of things to clear the tube and even Goggled for a few more options, but there was no way the blockage was being cleared. Back to hospital for a replacement.
It was here that I got sprung. I'd lost more weight (about 15kg now) and was dehydrated. They admitted me to "take care of me". It was from this point that things went down hill.
Firstly, I didn't get any feed for two days because they forgot to order it, so I lived on water.
There were one or two nurses on the ward who were amazing, but the rest were very, very ordinary. Their level of care was nowhere near good enough.
I woke up one night and wanted to go to the toilet, no big deal you say. I had three tubes connected to me, so I got out of bed to disconnect them, but the tubes stopped me reaching the connections so I couldn't undo them. By the time the nurse got there it was too late. While waiting I'd actually pulled my cannula (Tube inserted into a vein to administer medication) and my temperature was through the roof, again. Yes, another infection. Thank you.
My naso-gastric tube has small, plastic fittings on it. They are fragile, so you have to be very careful with it. You guessed it, a nurse twisted it t tight, and broke it. She disappeared very quickly. So I had to go through the whole tube process again complete with X-Rays etc. Number three.
I was also being given increased levels of a Morphine based medication, which I just don't cope with. It makes me go loopy. I was totally paranoid. I imagined I was in a basement ward with no windows and the exits were guarded (I was on fourth floor with a window) and at night the nurses were having secret meetings about keeping us all under control with drugs. When I was awake, and closed my eyes, I could see a computer screen in my head, and I could log on to web sites and so on. I found I was typing away with my fingers when this was happening. Suzanne told me the best thing was when I threw an imaginary item across the room. Note to self, no more morphine for me.
Yup, I was really out of it for a few days. I was bombarding Suzanne with texts to come and get me. I wanted out.
It took me two weeks, but I finally bluffed my way out of hospital by telling the doctors I'd do everything that they asked and showed them that I could swallow water and pureed food just fine. It was a real struggle and incredibly painful, but I had to do it to get out of there. I won't go back to hospital unless it's a private hospital FULL STOP.
Of course once I got home things were different. I can't swallow anything, not even water, without it burning my throat. I'm supposed to have three litres of liquid food through my nasal tube, and drink three litres of water. THREE LITRES? I'm struggling with one bag of food and about a litre of water. This of course leads to "discussions" between Suzanne and I and she's not happy. It's bloody hard to put that stuff into my stomach when it makes me fee sick, even when I take the anti nausea medication. When I try the result is I start coughing, which hurts my throat, then dry retching, which really hurts the area where they have burned the cancer away, and we're back to stage one.
I really have had enough.
The doctors are all telling me how good it is, I'm healing really well, and I should really notice a difference and start feeling better in a few weeks. I've been hearing this for as while now, and I'm really not feeling much better at all. I need to see some results so I can tell myself this has all been worthwhile.
Right now, if I had my choice to undergo this treatment again, or ignore it, I'm not sure what I'd choose.
So things are supposed to get easier?
OK kids, I've been diagnosed with cancer at the base of the tongue in my throat. Not a good thing, but every medico I've spoken to has been extremely positive and told me it is totally curable with treatment.
I'm not shopping for sympathy, but I'm not much of a talker about private stuff (much to Suzanne's dismay) so I'm writing this the keep family and friends up to date, and save you all a bunch of phone calls and emails. Maybe this will also help out someone who might go through the same thing somewhere down the track. It's always good to get the story from the horse's mouth, even if his tongue is a bit munted. 😃
It's been a while since my past update, but I just haven't felt kike doing anything but sleeping for a while.
All of my treatment is now complete. No more chemotherapy, and no more radiotherapy. I walked out of the last session feeling pretty pleased with myself.
I still can't swallow anything, water included, because of the pain so I'm still getting all my nutrients from my naso-gastric tube, a tube that goes up my nose and down into my stomach.
That's great idea...but if the tube gets blocked, it has to be replaced, not a very nice experience.
I woke up one morning, disconnected my feed bag, and went to the toilet. I would normally run two or three large syringes of water through the tube to keep it clear when I take the food gag off. As I walked back past the bed I decided I just have a little nap. I woke up a few hours later, and the tube was blocked. We tried a number of things to clear the tube and even Goggled for a few more options, but there was no way the blockage was being cleared. Back to hospital for a replacement.
It was here that I got sprung. I'd lost more weight (about 15kg now) and was dehydrated. They admitted me to "take care of me". It was from this point that things went down hill.
Firstly, I didn't get any feed for two days because they forgot to order it, so I lived on water.
There were one or two nurses on the ward who were amazing, but the rest were very, very ordinary. Their level of care was nowhere near good enough.
I woke up one night and wanted to go to the toilet, no big deal you say. I had three tubes connected to me, so I got out of bed to disconnect them, but the tubes stopped me reaching the connections so I couldn't undo them. By the time the nurse got there it was too late. While waiting I'd actually pulled my cannula (Tube inserted into a vein to administer medication) and my temperature was through the roof, again. Yes, another infection. Thank you.
My naso-gastric tube has small, plastic fittings on it. They are fragile, so you have to be very careful with it. You guessed it, a nurse twisted it t tight, and broke it. She disappeared very quickly. So I had to go through the whole tube process again complete with X-Rays etc. Number three.
I was also being given increased levels of a Morphine based medication, which I just don't cope with. It makes me go loopy. I was totally paranoid. I imagined I was in a basement ward with no windows and the exits were guarded (I was on fourth floor with a window) and at night the nurses were having secret meetings about keeping us all under control with drugs. When I was awake, and closed my eyes, I could see a computer screen in my head, and I could log on to web sites and so on. I found I was typing away with my fingers when this was happening. Suzanne told me the best thing was when I threw an imaginary item across the room. Note to self, no more morphine for me.
Yup, I was really out of it for a few days. I was bombarding Suzanne with texts to come and get me. I wanted out.
It took me two weeks, but I finally bluffed my way out of hospital by telling the doctors I'd do everything that they asked and showed them that I could swallow water and pureed food just fine. It was a real struggle and incredibly painful, but I had to do it to get out of there. I won't go back to hospital unless it's a private hospital FULL STOP.
Of course once I got home things were different. I can't swallow anything, not even water, without it burning my throat. I'm supposed to have three litres of liquid food through my nasal tube, and drink three litres of water. THREE LITRES? I'm struggling with one bag of food and about a litre of water. This of course leads to "discussions" between Suzanne and I and she's not happy. It's bloody hard to put that stuff into my stomach when it makes me fee sick, even when I take the anti nausea medication. When I try the result is I start coughing, which hurts my throat, then dry retching, which really hurts the area where they have burned the cancer away, and we're back to stage one.
I really have had enough.
The doctors are all telling me how good it is, I'm healing really well, and I should really notice a difference and start feeling better in a few weeks. I've been hearing this for as while now, and I'm really not feeling much better at all. I need to see some results so I can tell myself this has all been worthwhile.
Right now, if I had my choice to undergo this treatment again, or ignore it, I'm not sure what I'd choose.
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