June 2019.
Things are getting serious...
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. 😃
OK, this update is going to take the form of random notes. Firstly because it covers a time period of about four weeks, and my memory is a mess at the moment. Here goes.
Suzanne rolled out the reinforcements to try and get me to check in to hospital. First up Sister Jenny came to visit. She's a sweetie, but I think she understands that I've made up my mind. Next was a surprise visitor. Our next door neighbour, who happens to be a nurse. She didn't have any success either.
I accept that I am malnourished, and dehydrated, and I'm trying to fix this, but I just can't. The sheer volume of liquid food, which makes me want to vomit, and often does, and three litres of water every day, is just too much for my body. I can't do it. Going to hospital doesn't fix this. The food supply is erratic to say the least, but the fluid drip does help. My mental health suffers dramatically because I hate being stuck where I can't do anything. I've also picking up infections, not slept at all, due to the noise on the ward, and constantly being woken from medical reasons. Once I was woken at 5 am to be weighed.
Suzanne got her way. I woke up and my tube was blocked. I refused to go to The Albert so we headed off to Knox Private Emergency. After handing over a $300 payment (not covered by private health) we were in.
What a difference. The place is spotless, the staff are awesome, and happy, even at the end of their shifts. The nurse had a quick look at my tube, walked over to the Coke machine, bought a can of Coke, and started injecting it into my tube. Coke! Can you believe that the fittings on my tube and equipment are different to the ones Knox have? Neither could I. Luckily, after out last visit to The Alfred, we bought food bags, feeding tubes, syringes, etc. with us. It took two hours, and the nurse said if she could have used her gear it would have been about half an hour.
We were ready to go, but where? My vote was home, Suzanne's vote was, because Knox was full, another hospital. I submitted, and half an hour later I was snuggled up in a nice, warm bed at Ringwood Private Hospital. I think I was there for four nights.
Once again, it was very nice. I slept extremely well without the noise of The Alfred, and the barking of the dogs at home. It was awesome to see a couple of mates from Perth come over and visit for a few days. There was a of of laughter coming from my room for a few days, and the nurse visits seemed to become more frequent while Dr John and Dr Andrew were there. Thanks guys, you weren't what the doctor ordered, but you were just what I needed.
After a good dose of "Laughter is the best medicine" my doctor showed up and about 7pm and said, "I think you're fine to go home", music to my ears. Suzanne wasn't so happy.
At home on the weekend, another old Victorian friend dropped in for a coffee. It was only a 150 km round trip for him, just to have a chat. Thanks Phil, you're a gem.
Back to the usual grind of visits to The Alfred. My Oncologist is very concerned about my food and fluid intake. She's put me on an antidepressant to help me sleep.
My Radiologist was not happy with me, but admitted I looked better than he thought I would after reading all the notes and phone calls between the doctors and Suzanne.
When Prof Sydney asked my why I wouldn't drink the required amount of water, I explained again that three litres of water a day, when your not exercising, and the temperature is around 15 degrees max, is just way more than I handle. prof paused, then moved onto something else. A few minutes later, he stepped out to take a call. When he returned he explained he'd been talking to my nutritionist and she said I was mistaken, I only had to have THREE LITRES IN TOTAL. So one and a half of the food, and one and a half of water. I've been arguing this with everyone for months. Oh well, at least we're back on track and everyone of happy again...or so you'd think.
I looked in my feeding tube drawer when we got home, and we were getting low. Suzanne made a quick call and we could pick some more up the following day when we visited the hospital. Cool. I was down to my last tube when we left for the hospital. When we got there, there were four tubes for me. I use about three a day. We were promised that some would be posted tomorrow (Thursday) and a box couriered the next day. One of the four tubes I had been given was faulty, so I had enough tubes for Thursday. Guess what? No tubes arrived. Well, they did, they were delivered to the Post Office, and a note put in our mail telling us we had a parcel to pick up. Don't forget, Australia Post can't deliver mail to us, even though we are less than 1,000 metres from the Post Office. Another two days without food. I can see after a few weeks my excuse will be "The dog ate my food".
We're keeping close tabs on my calorie intake and it's going OK. I'm still not up to the required amount, but I'm getting very close. Another week or so and I should have this nailed.
I'm also nibbling and some solid food at last. It's been three months without solids. They're only very small bites, but a little every day. My taste buds are still only at about 10%, and I'm not producing much saliva yet, so it's a dry, bland nibble, but it's a start.
Things are getting serious...
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. 😃
OK, this update is going to take the form of random notes. Firstly because it covers a time period of about four weeks, and my memory is a mess at the moment. Here goes.
Suzanne rolled out the reinforcements to try and get me to check in to hospital. First up Sister Jenny came to visit. She's a sweetie, but I think she understands that I've made up my mind. Next was a surprise visitor. Our next door neighbour, who happens to be a nurse. She didn't have any success either.
I accept that I am malnourished, and dehydrated, and I'm trying to fix this, but I just can't. The sheer volume of liquid food, which makes me want to vomit, and often does, and three litres of water every day, is just too much for my body. I can't do it. Going to hospital doesn't fix this. The food supply is erratic to say the least, but the fluid drip does help. My mental health suffers dramatically because I hate being stuck where I can't do anything. I've also picking up infections, not slept at all, due to the noise on the ward, and constantly being woken from medical reasons. Once I was woken at 5 am to be weighed.
Suzanne got her way. I woke up and my tube was blocked. I refused to go to The Albert so we headed off to Knox Private Emergency. After handing over a $300 payment (not covered by private health) we were in.
What a difference. The place is spotless, the staff are awesome, and happy, even at the end of their shifts. The nurse had a quick look at my tube, walked over to the Coke machine, bought a can of Coke, and started injecting it into my tube. Coke! Can you believe that the fittings on my tube and equipment are different to the ones Knox have? Neither could I. Luckily, after out last visit to The Alfred, we bought food bags, feeding tubes, syringes, etc. with us. It took two hours, and the nurse said if she could have used her gear it would have been about half an hour.
We were ready to go, but where? My vote was home, Suzanne's vote was, because Knox was full, another hospital. I submitted, and half an hour later I was snuggled up in a nice, warm bed at Ringwood Private Hospital. I think I was there for four nights.
Once again, it was very nice. I slept extremely well without the noise of The Alfred, and the barking of the dogs at home. It was awesome to see a couple of mates from Perth come over and visit for a few days. There was a of of laughter coming from my room for a few days, and the nurse visits seemed to become more frequent while Dr John and Dr Andrew were there. Thanks guys, you weren't what the doctor ordered, but you were just what I needed.
After a good dose of "Laughter is the best medicine" my doctor showed up and about 7pm and said, "I think you're fine to go home", music to my ears. Suzanne wasn't so happy.
At home on the weekend, another old Victorian friend dropped in for a coffee. It was only a 150 km round trip for him, just to have a chat. Thanks Phil, you're a gem.
Back to the usual grind of visits to The Alfred. My Oncologist is very concerned about my food and fluid intake. She's put me on an antidepressant to help me sleep.
My Radiologist was not happy with me, but admitted I looked better than he thought I would after reading all the notes and phone calls between the doctors and Suzanne.
When Prof Sydney asked my why I wouldn't drink the required amount of water, I explained again that three litres of water a day, when your not exercising, and the temperature is around 15 degrees max, is just way more than I handle. prof paused, then moved onto something else. A few minutes later, he stepped out to take a call. When he returned he explained he'd been talking to my nutritionist and she said I was mistaken, I only had to have THREE LITRES IN TOTAL. So one and a half of the food, and one and a half of water. I've been arguing this with everyone for months. Oh well, at least we're back on track and everyone of happy again...or so you'd think.
I looked in my feeding tube drawer when we got home, and we were getting low. Suzanne made a quick call and we could pick some more up the following day when we visited the hospital. Cool. I was down to my last tube when we left for the hospital. When we got there, there were four tubes for me. I use about three a day. We were promised that some would be posted tomorrow (Thursday) and a box couriered the next day. One of the four tubes I had been given was faulty, so I had enough tubes for Thursday. Guess what? No tubes arrived. Well, they did, they were delivered to the Post Office, and a note put in our mail telling us we had a parcel to pick up. Don't forget, Australia Post can't deliver mail to us, even though we are less than 1,000 metres from the Post Office. Another two days without food. I can see after a few weeks my excuse will be "The dog ate my food".
We're keeping close tabs on my calorie intake and it's going OK. I'm still not up to the required amount, but I'm getting very close. Another week or so and I should have this nailed.
I'm also nibbling and some solid food at last. It's been three months without solids. They're only very small bites, but a little every day. My taste buds are still only at about 10%, and I'm not producing much saliva yet, so it's a dry, bland nibble, but it's a start.
