3 April 2019.
Busier than a three legged dog in a pine forest.
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. 😃
What a big day.
I started the day with a liquid breakfast, but not the kind I'm used too. Juice, Milk with Sustagen, a protein milk drink, and water.
Later in the morning the nurses arrived with my feeding tube. With a bit of lube, the tube was in before I knew it. So I now have a length of plastic tube going up my nose, down my throat, and into my stomach, hopefully. I say hopefully because very occasionally the little buggers decide to go into a lung instead. No one here really wants my lung full of food so the next step is to be trundled off to X-Ray for a look see, and find out exactly where the tube us.
The tube isn't anywhere near as bad as I expected, in fact it's not a problem at all. I'm now thinking this is the way to go instead of a three month PEG, if, and it's a big if, I can get away with it. I might have to start smuggling fishing sinkers into my pockets for weigh in.
If you were wondering, I've lost about nine kilos in the last four weeks, most of it in the the last week. About a kilo a day at present. Any other time everyone would be ecstatic, but not in this situation. Apparently It's really hard to regain muscle tone after all the treatments. That's why they are all onto it.
My next visitor was Shaham. I'm not sure what his title is, but he's another Doctor who has been studying my progress. He's another one of those people you immediately feel comfortable with. He popped in to have a look at my leg. In the last week my right foot has developed a case of droopyness. I can't raise it above horizontal, and it's affecting my walk. My calf is also numb. One of the side effects of Chemo is nerve damage. It concerns me because it's my rear brake foot. It's OK at the moment, but if I loose the ability to push down, I'm in trouble.
The best physio in the world, Nat, told Suzanne that it's possibly a coincidence, and I may have a compressed nerve in my knee from something unrelated, like sitting on a wooden stool, cross legged, at a computer at home because I haven't set my office up properly yet. Hmmm, job number one when I get home.
Word came back from X-Ray. The tube is in my oesophagus, and needs to go in further. The nurses gave it a big shove, and by big shove I mean a very gentle assist and glided it in about another ten centimetres.
Off to X-Ray, take two. We arrived at X-Ray and there were beds and wheelchairs going everywhere. They'd had major drama in the waiting room, moved every one out, and told us they we taking no more patients. My orderly was switched on. He pushed my wheelchair up against a wall, grabbed someone who was ready to go back to the wards, and disappeared. What could they do? I had my X-Ray and was out of there in about ten minutes. Thanks mate.
Back to the ward with an X-Ray all clear, so we could hook up the feed bag. The idea is to start out slow and increase the flow gradually. I the end it will mean I can get a full bag in and not have to take all day doing it, freeing me from the bag and pump.
Next in line was my new Oncologist, Because I'm in inpatient now, most things change. She was great, but I like the fact that Grace has been monitoring me from the start. I'm sure we'll get along fine.
The highlight of the day was Suzanne and Paige rolling up. Paige's new cat, Charlotte, is settling in slowly, and was out and about exploring the house last night.
Then the Dermatologist arrived. I've developed another side effect, a rash over my back and sides. It's not itchy, just lots of little spots like a heat rash. A heat rash in Melbourne, ha ha ha ha ha ha ha ha ha ha! She's basically said, leave it, see what happens, and if it's still a problem after all your treatment, we'll follow it up. I'm happy with that. She was more interested in my Mycosis Fungoides, even my diseases have Fun in them. She looked a little disappointed when I explained the affected area of skin was clearing rapidly since the intro of Chemo. She's keen to see me after treatment about that.
Shaham popped back again, just to have a chat about what he thought was going on, and to let me know he was perusing it.
Then I dined out on another liquid dinner.
Busier than a three legged dog in a pine forest.
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. 😃
What a big day.
I started the day with a liquid breakfast, but not the kind I'm used too. Juice, Milk with Sustagen, a protein milk drink, and water.
Later in the morning the nurses arrived with my feeding tube. With a bit of lube, the tube was in before I knew it. So I now have a length of plastic tube going up my nose, down my throat, and into my stomach, hopefully. I say hopefully because very occasionally the little buggers decide to go into a lung instead. No one here really wants my lung full of food so the next step is to be trundled off to X-Ray for a look see, and find out exactly where the tube us.
The tube isn't anywhere near as bad as I expected, in fact it's not a problem at all. I'm now thinking this is the way to go instead of a three month PEG, if, and it's a big if, I can get away with it. I might have to start smuggling fishing sinkers into my pockets for weigh in.
If you were wondering, I've lost about nine kilos in the last four weeks, most of it in the the last week. About a kilo a day at present. Any other time everyone would be ecstatic, but not in this situation. Apparently It's really hard to regain muscle tone after all the treatments. That's why they are all onto it.
My next visitor was Shaham. I'm not sure what his title is, but he's another Doctor who has been studying my progress. He's another one of those people you immediately feel comfortable with. He popped in to have a look at my leg. In the last week my right foot has developed a case of droopyness. I can't raise it above horizontal, and it's affecting my walk. My calf is also numb. One of the side effects of Chemo is nerve damage. It concerns me because it's my rear brake foot. It's OK at the moment, but if I loose the ability to push down, I'm in trouble.
The best physio in the world, Nat, told Suzanne that it's possibly a coincidence, and I may have a compressed nerve in my knee from something unrelated, like sitting on a wooden stool, cross legged, at a computer at home because I haven't set my office up properly yet. Hmmm, job number one when I get home.
Word came back from X-Ray. The tube is in my oesophagus, and needs to go in further. The nurses gave it a big shove, and by big shove I mean a very gentle assist and glided it in about another ten centimetres.
Off to X-Ray, take two. We arrived at X-Ray and there were beds and wheelchairs going everywhere. They'd had major drama in the waiting room, moved every one out, and told us they we taking no more patients. My orderly was switched on. He pushed my wheelchair up against a wall, grabbed someone who was ready to go back to the wards, and disappeared. What could they do? I had my X-Ray and was out of there in about ten minutes. Thanks mate.
Back to the ward with an X-Ray all clear, so we could hook up the feed bag. The idea is to start out slow and increase the flow gradually. I the end it will mean I can get a full bag in and not have to take all day doing it, freeing me from the bag and pump.
How much of an improvement is that?
Not as satisfying as a steak and chips, but let's hope it does the job. Pump away baby.
Shaham had previously asked if he could bring some other doctors back to take a look at my leg. I am a firm believer that everyone has to learn sometime, and I'm happy to be a Guinea Pig, so I said "Of course". Shaham rocked up with three other Doctors. It was interesting because the way he spoke to them I thought they were his students, but it turns out they were more highly qualified than he is, for now. He's on a path, and nothing is going to stop him Go Shaham.
One of the Doctors poked and prodded, did the pin prick tests, tickles and scratched me. Tested the strength of me legs and arms in all directions. It really was interesting to watch the process of elimination at work.
The highlight of the day was Suzanne and Paige rolling up. Paige's new cat, Charlotte, is settling in slowly, and was out and about exploring the house last night.
Then the Dermatologist arrived. I've developed another side effect, a rash over my back and sides. It's not itchy, just lots of little spots like a heat rash. A heat rash in Melbourne, ha ha ha ha ha ha ha ha ha ha! She's basically said, leave it, see what happens, and if it's still a problem after all your treatment, we'll follow it up. I'm happy with that. She was more interested in my Mycosis Fungoides, even my diseases have Fun in them. She looked a little disappointed when I explained the affected area of skin was clearing rapidly since the intro of Chemo. She's keen to see me after treatment about that.
Shaham popped back again, just to have a chat about what he thought was going on, and to let me know he was perusing it.
Then I dined out on another liquid dinner.
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