17 April 2019.

Big catch up.

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 😀.

Sorry about the lack of news boys and girls, but I've been pretty tired up for the last few weeks.

Tha Naso Gastric tube that had been inserted is not such a big deal. I've been placed in a ward for a few days to make sure I can cope and know what to do. No biggie. This will be my food source for the next three or four weeks, at least.

Yahoo! Home again. All good....for now...

I woke up Wednesday morning to go to hospital for my usual radiotherapy, and was burning up with a fever. The Chemo has reduced my immune system to nearly nothing, so I'm extremely susceptible to any sort of bug out there. I found one. I was delirious, and told I was quite abusive to Suzanne when she tried to take my temperate. Another apology Suzanne. The high temperature is really dangerous at the moment, so we skipped radio and Suzanne took me straight into emergency. I was all a bit of a blur for me as I was out of it.

Emergency immediately rushed me straight into an isolation cubicle (no waiting) and every one was masked, gowned, and gloved up. The first thing they did was try and reduce my temperature, then get my blood pressure up, it was feebly low. The next job was to see what bug I had, and if it was courageous. They really weren't impressed with what I was coughing up, but I'll spare you the description. Luckily it wasn't the flu. Apparently I was moved around to about four different rooms, had numerous blood samples taken, fed a heap of intravenous drugs and fluids, and X Rayed. I remember very little of this. Once again Suzanne ran the whole show.

After 10 hours in emergency, my fever finality broke about 5 pm and I was admitted to general ward, it took ages to find a bed.

Suzanne drove home exhausted. This holiday we're going to take had to be a bloody good one, she deserves it and more.

I was taken down to Radiotherapy on Thursday, in my hospital bed. All the girls were very concerned. When Jo on reception saw me she came over and held my hand, and was almost in tears. A quick word about Jo. All the girls and guys here are absolutely bloody awesome, Jo is special though. She's was our first point of contact at Radio and is a very upbeat, happy person. Jo and I hit it off immediately and enjoy a joke every time I go in, and she always comments on my "colourful shirts". No big deal you say. Well it is a big deal when you go in there and feel like a bag of crap I'll tell ya. Jo's smile and banter as a welcome makes me feel 100 times better. So, thank you Jo, from me, and also from the hundreds of other patients you see all the time. You make a huge difference to us.

By Friday I was feeling pretty good so I walked down to Radiotherapy. The reception was much better when I walked in under my own steam. 

As I mentioned, I'm suck in a ward at the moment, they won't let me go until my stats are good. Here's a run down of or public medical system, in this ward. The nurses here are (mostly) absolutely amazing and perform brilliantly under duress. 

Most of the blood pressure monitors don't work, wasting nurses time running around trying to find one that does. Remember, they are taking my blood pressure every two hours day and night. Wake me up at 2 am, monitor doesn't work, go and find another one, come bake fifteen minutes later, wake me up, take my blood pressure. 

The two bed moving tractors on this ward don't work, so the orderlies have to manually push the beds around. There are a couple of ramps on the way to Radio, so they have to have two orderlies in case things get out of control. More time wasted. 

Most of the new, you beaut electronic thermometers don't work.

My issue with the one nurse is she had a cold and kept sniffing. At one stage she wiped her nose nose with her hand, in a glove, while she was changing my feeding tube. Right now my immune system is almost non existent, which is why I ended up back in here. This isn't a Chemo ward, but really? 

At least the view is better than most.

Wow, my room share mates this visit have been, um, interesting. It's a two bed room, so you think you'd be pretty safe eh?

The first guest was a lovely old lady, who was unfortunately very hard of hearing, which means that all day and all night all the nurses yelled at her. No sleep.

Out next guest was a drug fucked bloke who just wanted to confess he was a drug addict, and let everyone know "Its all a scam". I never did find out what "It" was. At one stage he had five people bailed up at the door (including a useless security guard) wielding his medication pole. I disconnected all my med tubes, put my shoes on, and stood behind him and quietly suggested he put the pole down. I'd had a gut full and was ready. He ended up putting the pole down and falling on the floor. Half an hour later he was throwing his trays around the room. No sleep. Off to The Psych Ward for him.

Guest number three was a real teat. I though I was grumpy. This grumpy old bastard was just a stubborn old prick who should know how to behave better. He wouldn't take his meds, he wanted water, which he wasn't allowed to have, he wanted female nurses. He loudly moaned and groaned about absolutely everything. You're 88 years old mate, grow the fuck up. Again this morning with the female nurse. I'd had enough. I walked over to his side of the curtain (I'll use my lack of sleep as an excuse for not being my usual , charming self) and told him so. I don't think we'll be swapping Christmas cards. I had to remind him again once. The nurses walked over and gave me a smile and a thumbs up. They are trying to help and they don't need that sort of harassment.

Today I noticed I have no hair growing on my chin. I haven't shaved for about a week and I've grown a bit of a mo, and some mutton chop side burns, but no chin hair. Oh well, I could never could grow a decent beard anyway. Suzanne tells me there are patches missing from the back of my head as well. Oh well.

No more Chemo, and only seven rounds of Radio to go. Not long now and recovery can begin. 

Desires in order of preference:
1. My throat to stop being so painful.
2. My taste to comeback.
3. Be able to maintain my wight by eating, and lose the feeding tube.
4. Go for a ride.

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.

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.

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.

2 April 2019.

We're off to see the Wizard...

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. 😃

We're off to see the Wizard, the wonderful Wizard of Radiotherapy.

Breezed through Radiotherapy today, the it was an appointment with Prof Sidney. This was an appointment I was dreading.

The Prof wasn't happy with the weight I'd lost (I hadn't eaten anything all weekend) and said it was time to act. I know what that meant, I'd bought my case of clothes etc ready to be admitted.

A quick blood test and cannula insertion, and I was sat in a corner to await admission for a gastric tube. That's a tube that goes up my nose, and down into my stomach. The next step will be a PEG, which is a tube stuck straight into my stomach, through the skin, from the outside.

They need an anaesthetist in attendance for this just in case something goes awry. WHAT? If my weight loss doesn't stop, then the PEG goes in. Simple. What is not so simple is that the PEG has to stay in for three months. Sigh.

Hurry up and wait.

Wait faster.

At about 5:30 they found me a bed and I tucked in by the nurses by 6:00.

Let the fun begin.

1 April 2019.

I'm taking the tube.

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. 😃

As we walked into Radiotherapy today I was cornered by the Nutritionist, they really are on the ball here. She told me that my weight loss was unacceptable and if I didn't reverse the trend, or slow it down, I WILL be fed by a tube. I've lost about 9 kg.

There are two options:

Option 1 - A Nasogastric tube up my nose, down my throat, and into my stomach, and we pump liquid food in through that line. Not a good option with the Radiotherapy and CPAP Sleep Apnoea masks, or the fact that my throat is raw from the treatment.

Option 2 - A Gastronomy tube, which is inserted directly into my stomach, through my not so round anymore belly, with the same way of feeding. This is my preferred option, BUT.... it has to stay in for a minimum of three months. I don't have to use it all that time, but the Doctors won't remove it until three months is up, and I can show I'm eating enough to maintain a healthy weight.

Pretty basic really.

I'm starting to think this whole cancer thing is a pain in the arse.

To be honest, accepting the tube is a relief. The whole eating thing is just way too hard. No appetite, no taste, no saliva production, a raw throat...I just can't do it.

I'm guessing that the tube will go in tomorrow.