29 March 2019.

I was nearly Spider-man.

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. 😃

I was devastated today! 

I found the perfect Huntsman Spider to take in and get radiated for my Spider-man plan, but he was just to quick for me so couldn't catch him.

Sister Jenny did the driving duties again today which takes a huge load off Suzanne, but loads it onto Jenny because it's about a four hour round trip for her. Thanks again Jen. Oh, and of course she bought me some more chicken noodle soup which is what I'm surviving on at the moment.

We dropped Suzanne in town so she could spend a day and night with her painty friends at the Australian Body Art Awards. Suzanne was booked in as an instructor for this weekend, but pulled out to look after me. I almost had to force her to have a day off and run amok with her friends, some of whom she only sees every couple of years. I hope she relaxed, didn't cry much, and had a good time.

 https://www.australianbodyartawards.com.au/abaa-convention

Suzanne (Artist), Carysse (Model), and Maria (Organiser)

Suzanne cleaned up the brush and sponge category

at the last ABAA in 2016.

Radiation was another doddle today, so it was a quick trip. 

I don't think I've ever loved weekend like I do right now, and I love my weekends. Two days away from the driving and the hospital feels sooooo good.

See you next week.

28 March 2019.

Same old thing.

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. 😃

Another standard day today,

Drive 60 k to hospital.
Radiotherapy.
Nurse review where I was told to eat more.
Drive 60 k home.

It's all taking it's toll on us both now. I can have a sleep on the way home, but as Suzanne is driving, it's probably better that she doesn't. We pulled over for Suzanne to have a break as she was nodding off, coincidentally at the Darrell Lea (Chocolate) Outlet store. It's a sweet place (sorry) to visit. They sell chocolate seconds and you can buy a huge bag of broken Easter Eggs for few dollars. Their double coated. white and dark chocolate, liquorice bullets are to die for. I think we'll be visiting here a lot more when I've got my sense of taste back because it is the BEST chocolate we've tasted.

Do you remember Coconut Roughs from your childhood?

There are ever better.

dlea.com.au 

Another side effect of my medication (Big doses of Steroids every day) is that I'm bloody grumpy and had to get along with. Yes, more so than usual. Obviously Suzanne cops the brunt of this. It's not fair as all she does is worry about me and look after me. Sorry Suzanne.

Tonight I kept mt previously made promise. "Yes, I'll take the Morphine. Yes I'll drink the pink goo that coats my throat and numbs it. Yes, I'll try and eat." I managed a bowl of Minestrone soup and a couple of small bites of Salmon.

I've told Suzanne that once we get this out of the way we'll go on a holiday of her choosing. Suzanne is the opposite of me and likes lazy holidays, apparently they are relaxing, and she deserves whatever she wants after this. 

We started making a list of what we wanted:
Relaxing.
Nice hotel.
24 hour room service.
Walk to good restaurants.
Somewhere cool, not hot.
Not touristy.

We thought about a lot of options, one of which was a week in a Melbourne hotel, but realised we'd probably go home t see Vader a couple of times - more driving.

We loved our Tasmania trip and thought about a week in Hobart, or Launceston, but I'd want to visit lots of places. More driving, and it's not about me.

Then I browsed our want list again. It was obvious. We needed to go on a cruise.

I's funny because we did a three week cruise of the Mediterranean a few years ago and although it was OK, it's not something we would do again. Well, I think we will, possibly Melbourne to New Zealand. If you have any suggested cruises email me at mykolajenko@hotmail.com

This is what we're aiming for.

27 March 2019.

They're ganging up on me.

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. 😃

Wednesday is a big day.

Radotherapy
Oncologist visit
Chemotherapy
Dietitian visit

The shot version is everyone told me I have to eat more.

The dietitian tried me on some samples of "compact protein" drinks. I managed most of them, but my favourite flavour, coffee, burned like a bastard. Poo! Apparently I can survive on these for the next four weeks if I drink about eight a day. I feel nauseous just thinking about it. Oh yes, that's another side effect of the Chemotherapy, nausea. That makes it even easier to eat, NOT!

We left armed with copious amounts of drinks, and will pick up more tomorrow. If I can get through three or four of these a day, and squeeze in some food, we should be OK.

We'll see.

To be honest, as I sit here right now, that feeding tube is sounding better and better.

26 March 2019.

Would you care for some morphine with that coffee?

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. 😃

Another easy Radiotherapy session today, followed up by a treatment assessment with Tristan. 

I got chatted about my weight, so I explained it was because I couldn't taste anything and my throat was sore.Tristan looked down my throat and was shocked. It's ulcerated and raw. He just looked at me and said no wonder it hurts, I have patients who would be in a heap on the ground, crying if their throat was like that. What pain medication are you taking. I answered "Panandol a couple of times a day."

What do we do? We break out the Morphine. Hmm, I'm not so keen on that, but I have to eat, and if I don't have some pain relief, I can't eat. OK, let's do it.

Tristan arranged some Morphine patches and we already have Morphine liquid for me to swallow before I eat. I've used it once, but I have to tell you, I get high on Panadol Forte and am absolutely useless if I take it. I took the Morphine (1/2 ml) and I was away with the fairies for the rest of the day. Now we're adding a patch in on top. I don't think this will be good.

My one saving grace at his stage is that I can still taste coffee.

Let's do this.

25 March 2019.

We have a new toy. 

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. 😃

I've been running late with blog updates. Sorry. After Friday I overdid things and was knocked off my feet for the weekend.

Radiotherapy today was a breeze and the mask is no longer a problem Yahooooo!

Where I do have problems is...

I've lost 5 kg in a week, which normally would be a good thing. In this situation, not so good.

Why? The side effects are kicking in, hard, which in week three of treatment is quite normal.

I can't taste anything, so eating wet cardboard, that's what everything tastes like, is bloody hard. Throw in a seriously bad sore throat (it's burned on the inside form the Radiotherapy. That's the whole idea), and I can't swallow food. The result is I'm just not eating enough. I understand the importance of not losing weight, and I am trying really hard, but I just can't get stuff down. I was surviving on Suzanne's smoothies, but they are now like swallowing liquid fire.

OK, enough sooking!

The highlight of my day was catching up with some friends who are over from Perth for The Australian Body Art Awards. Amy is like our daughter, and Kyla is like a sister to me They are two of my favourite people. Off to El Rincon for lunch. A lot of laughs were had. I needed that girls.Thank you.


Amy, Suzanne, Little ol' Me, Kyla.

Next stop was to pick up another auction win. A rolling Yamaha SR500 frame and parts. This is purely a financial venture. If you know anyone who wants some 1980 Yamaha SR500 bits, get them to contact me.

Than it was off to pick up Vader's new toy...









Yup, we now have a sidecar. It's a 1982 Suzuki GS1100G with an HRD one and a half adult sidecar. There's room for Vader to sit beside Suzanne, and he hangs his head out the side in the wind, loving life. He's a happy chappy.

We test rode it Sunday and I rode it home today. I only ended up on the wrong side of Wellington Road once, heading into oncoming traffic which could have been very nasty. I was riding through a left hand bend at about 90 kph and it just went right. It is in need of some SERIOUS Set up work. It doesn't wobble, or shake the front end, it just veers left or right at any time without warning. Yes, it's exciting to say the least. Obviously the road surface and bumps influence the car tyres severely. I've spoken to people who had ridden this outfit when it was first built and they raved about how good it was, so I'm confidant that we cab get it back to a good ride. The poor old Suzuki is pretty tired as well, so the motor might need a freshen up. 

Let the project begin...

22 March 2019.

I laugh at the "Mask of Terror."

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. 😃

Suzanne's sister Jenny kindly volunteered to drive the hospital trip today. We met at Marie's (Suzanne and Jen's mum) and dropped Vader off for baby sitting, then bolted. Jen then drove us in and out of town. Thank you so very much Jenny, it was a huge help. Some days I'm OK driving, but mostly Suzanne carries the load, and she's exhausted. It really did help a lot Jen.

A small victory today, I got through the whole mask episode extremely well. I only had one, little moment, and didn't have my escape bell. I'd say 95% OK now.

I know I'm tempting fate here, but I think I can breeze through the next twenty four radiation treatments.

When we went into Radiation, Suzanne noticed a rash on my back. We've been told to keep an eye out for any changes / symptoms and let the team know if anything shows up. Well, Suzanne "spotted" it (Sorry, bad pun) so we duly reported to the nurses, who found Tristan. They really are on the ball in this place when it comes down to actual medical stuff. Tristan suggested I take an anti histamine, keep an eye on it, and let him know on Monday how it's going. 

I reckon it's one of two things:

An allergy, which I don't normally suffer from. Now, my body is being pumped full of all sorts of crappy stuff at the moment, maybe something in there is the cause? I don't think so because it would probably shown up earlier. We've been trying all sorts of different food and drinks to find anything I can eat, maybe one of those? Again, I doubt it.

Early this morning I picked up my auction winnings from the week, a trailer and ute load of office and out door furniture. It took me an hour to load, and I was sweating like a pig doing it. Don't tell anyone, because apparently I'm not supposed to do this. I reckon that is the cause. I'm allergic to work.

See ya next week.

22 March 2019.

Eating shouldn't be this hard.

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 into week three now, and it's starting to bite.

The whole focus on not losing weight is because after Chemo and Radiation the body has a really hard time recovering and unfortunately the first thing to go is muscle mass. If I lose to much I won't be able to ride my bikes, so that CAN NOT happen.

Unfortunately it's bloody hard to eat. Anything.

Here's the process:

Cop the Chemotherapy, which causes the loss of the sense of taste, nausea, and loss of appetite.

Cop the Radiotherapy, which basically burns my throat (I've been told my mouth and throat will blister, and my saliva glands will drop off production), so it's very hard to swallow anything.

Take the medication, which cause nausea and loss of appetite.

Take anti nausea medication.

Try and eat food.

Take more medication to blah, blah, blah...

The bottom line is that I can taste very little, I have a very slimy mouth (yes, I know, a few girls have already told you that) so everything I try to eat is basically tasting disgusting. Then it's painful to swallow. I've been getting by with Panadol, but more often every day. The next step is a numbing gel (sounds wonderful), then a Morphine solution, at $79 a bottle. I'm not a big fan of taking medication, but I have to for this. I'm holding off on each stage as long as I can so hopefully it will have more effect when I need it.

Nurse Suzanne (Hmm, might have to get her a little uniform) has been making me smoothies left right and centre, and they are awesome. We'e experimenting with the contents because some just don't work, I bought a mango smoothie at the hospital yesterday. On sip and it nearly tore my throat out. Anything acidic is off the list, so I don't know if it was the mango or something else in there that did it. Another experiment coming up.

Once again Suzanne is coping the the worst of this. I'm doing the same things her dad just a few short months ago, so I can only imagine what she's going through her mind behind her mostly brave face. Just remember Suzanne, every person we have spoke to has said they can "cure" this, you're not getting off that easy.

21 March 2019.

Nurse Suzanne.

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. 😃

Man, that bloody Chemotherapy knocked me for six yesterday. I'm stuffed.

I hit the hay at 9 pm and slept really well.

Really, really, really well.

I woke a few times but didn't really wake up until 10 am!

That's thirteen hours of sleep. So much for getting started early on some things I needed to do today.

I was pretty groggy and uncoordinated all day today.

Nurse Suzanne is looking after me though. Here's a shot of the spreadsheets she uses to keep track of my medication, and appointments. There's another for my temperature, and another for my food intake. 

Wow! I've never see Suzanne so organised, she continues to amaze me...

It's fantastic. I don't have to think about a thing, I just hear "Take This" or "Take these" and the job is done.

Thank you Suzanne. 

20 March 2019.

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. 😃

Oh boy, what a day. Here's our schedule

11:10 Nutritionist - 30 minutes
11:15 Oncologist - 30 minutes
11:45 Radiotherapy - 30 minutes
12:00 Chemotherapy - 4 hours

As you can clearly see, this is not going to work. This is the one thing we've has issues with, there is no communication between departments in the hospital. For once I am able to adopt the "Not my problem, you sort it out" attitude. If I didn't my head would explode.

No biggie, we did the rounds, answered all the questions, argued that I will be using MY SCALES at home to track my weight as ALL the hospital scales weight differently. Case in point, Grace the Oncologist was very concerned that I had lost four kilos when I told her my weight. Off to her scales we go, lo and behold I'm four kilos heavier again. Seeing as they make such a fuss about not losing weight during treatment, I thought they might have addressed this.

Radiotherapy was easy today, in fact I nearly fell asleep. The mask is now 95% OK.

The rest of the day was just killing time and being pumped for of various chemicals and fluids, and stirring up the nurses of course.

I felt very, tired after Chemo today. I asked if it was a different batch, but they explained the Chemo is cumulative, and I'm going to feel worse the more I have. Oh well, that's three down and four to go. 

Here's a shot of me in the Chemo chair getting loaded. 

Hang on! WTF. That's supposed to be for me.

I think I'm handling this whole thing better than Suzanne. She is exhausted and needs some serious rest and recovery. When we're through this she will get a real Suzanne holiday she deserves.

Back to Grandmas to pick up Vader, and home again, home again, jiggety jig.

19 March 2019.

I'm back.

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. 😃

I'm back everyone. I'm over my "Feeling sorry for myself" episode of the weekend and feeling much better again, thank goodness.

I realise now that I am exhausted and have to manage that, or I'll fall in a heap again. I've never been a big sleeper, once I'm awake, I'm awake, my brain fires up and doesn't stop, so I get up and do things. A change in approach is required.

Last night I was off to bed by 9 pm, and immediately fell into a deep, restful sleep, until midnight. I got up, worked on some things, then went back to bed at 5 am and slept like a log until 7:30! That's a sleep in record for me. When I got up at 7:30 I felt a million times better. I think I might be onto something, I just have to adapt.

Today was an easy one, a quick Radiotherapy session. When I walked in a young trainee introduced herself and asked if it was OK for her to stay and observe. I said of course, everyone has to learn somewhere. Off we go...

I assumed the position and was bolted down to the bench. Then the Radiographers proceeded to explain to the trainee how to do things. Line this up here, make sure that is there, this secured to this, that needs to go to the right a bit. Yes, I was getting tense, but just kept telling myself that it's all OK. After what seemed like forever (probably about two minutes) they left the room. The sound of the "NO ENTRY" gate clicking shut was music to my enclosed little ears. The sound of said gate opening again is still my favourite though, and a few minutes later I'm free and walking out the door feeling pretty happy with myself. I reckon I'm 95% there with this bloody mask thing.

Time for a treatment review with Prof. Sidney. Sidney is quite simply a lovely man. We sat and chatted about how I was coping and had a bit of a laugh. When I told him I was grumpy, he looked at Suzanne with a knowing look in his eye, then, with a little smile, said to me "Simon, we're men, we're always grumpy." He was concerned that I had lost too much weight in the short amount of time I've been receiving treatment. At the hospital I haven't been weighed on the same set of scales twice so I'm keeping an eye on my wight using my home scales. This way I can compare apples to apples. Yes, I've lost a bit over a kilogram (FOR MY FRIENDS: Yes, I know I need to loose about fifteen more, but not right now you bastards). We told Sidney about my food intake, and I told him I think any loss is due to my not eating crap snacks, and not drinking alcohol for the last two weeks or so. He was happy with that, but I know everyone will keep an eye on my weight. It's like reverse Weight Watchers in here.

Talking about food, my sense of taste is shot to pieces. On they way home I asked Suzanne to stop at that large M burger chain. I know it's crap, but at the moment I need bulk calories, and I wanted to see if I could taste it. I reckon I'm only at about 20% taste right now. Bloody Chemo. You don't realise just how good toothpaste tastes until you can't taste it.

Back home at about 2 pm I trailed my new sleep pattern by going to bed for an hour, and got up three hours later. I felt really good. We're onto something here.

Some bittersweet news is that we have sold our caravan, which was home for nearly twelve months when we first moved here. It is an awesome van, but we just didn't have the room for it, and being honest, we probably wouldn't use it. If we go away, we'll go on the bike (or bikes when Suzanne gets hers) and either camp or stay in motels. We're sad to see it go though.

Our van is going to one of our new Cockatooian (do you like that word?) friends, so at least we can visit it. Suzanne and I offered to drop the van off and went over for a recce to the delivery point on Sunday. OH BOY! Me and my big mouth. 

Picture this. Dirt road, fairly steep uphill, three tight bends, one easy bend, a driveway angle that is less than 90 degrees to the road, and we'll throw in a very narrow gateway with about 150 mm clearance each side just to make it interesting. All in about 500 meters. I initially thought, yes, it's hard, but I can do that. 

We got home, and obviously in my delicate mental state, I started to stress big time about moving the van. Arghhhhh! All I could see was a van jammed in a gateway, blocking the road, and no way out. I think I'd rather face "The mask". 

Now here's a nice story. I chickened out with the van move and put a post on Facebook asking if there were any caravan reversing magicians who might be able to help up out. I was overwhelmed by offers of help from our local community. We even had a phone call while we were actually moving the van to see if everything was OK or if we needed some help. I love living here. Thanks guys.

So how did we solve the problem? Meet our friend Nick. Nick manages the caravan park we stayed at, and is also a keen motorcyclist so we immediately hit it off when we met, much to both our wives dismay. Nick drove for an hour, hooked up our van, towed it to it's new home, reversed it into the driveway like it was a 6 x 4 trailer, then drove an hour home. Bloody legend. Thanks Nick. We owe you BIG TIME.

You thought I was exaggerating when I said he gateway was tight didn't you? Look at Nick's cute little face looking
out the window. Awwwwww.

Tomorrow is a biggie. Oncologist visit, Dietitian visit, Chemo therapy and Radiation therapy. We told Vader and he wagged his tail. He knows he gets to spent the day at Grandma's.

18 March 2019.

Things are getting real.

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. 😃

I thought I was doing so well. The weekend was OK. My throat was sore and felt like I had a a pea sized piece of gavel stuck in it, but nothing a few Panadol couldn't sort out. 

Today though...My throat was really sore, and I think a whole string of things have just caught up with me, formed a viscous circle, and given me a big shove. 

I think it's been working like this for the last twelve days:

Take the necessary medication. Some to attack the cancer, some to stop nausea, which is a side effect of the other meds taken to kill the cancer, and so on. What a cocktail.

The medication stops me sleeping (I go to bed at 9 pm and  get up between 12 pm and 2 am).

I get tired.

I get angry because of the medication side effects, and because I'm tired. (Sorry Suzanne).

Throw in the fact that I have been drinking way too much for far too long, but have pretty much had no alcohol for that last few weeks, and I'm probably suffering from alcohol withdrawal as well.

I'm exhausted. We got home from the hospital today and I crashed on the lounge for a few hours. Out like light. Now life goes on and things need doing, and when I can't do them (I have a HUGE to do list) I get more frustrated and angry. I let a mate down yesterday because I was asleep on the lounge. Sorry Lawrence.

I'm not a huge fan of medication because they all have side effects that are undesirable. I try and avoid them if I can, but I might have to bite the bullet with this and look at options.

The good news today was that I managed the whole mask encounter without too much drama. I even did it without the "Get me outa here" bell in my hand. I'm still only about 90% OK with it, and definitely not comfortable, but it is improving. 

Oh yes, another side effect of the Radiation is I'm getting itchy skin. Ha! Who ever thought I'd have to come to Melbourne to get a tan?

On a much more positive note, I went for a quick drive this morning to pick up some auction goodies I bought. The drive took me in a direction I hadn't been before and made me realise just how bloody lucky Suzanne and I are to be living here in Cockatoo. It is a beautiful part of the world. Come over for a visit.

15 March 2019.

A new game to play.

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. 😃

Today was driving day, which was applicable because the Melbourne Grand Prix is on this weekend.

We had a 9:00 am Radiotherapy session locked in, and another at 4:15 pm so we left home at seven. The plan was to got to The Alfred, get microwaved, spend the rest of the day wandering around Saint Kilda, go back for session number two, then head home.

Vader (our dog) had other ideas.

We're not happy leaving Vader at home alone at the moment because of the nearby bushfires, so he goes with us whenever we go out...but not this morning. The stubborn little bastard absolutely refused to get out of bed. He just stuck his nose out from under the doona and gave us the "It's too bloody cold, and it's too bloody early. Go away." look.

Looks like we'll be making the trip twice today.

Driving in peak hour traffic in Melbourne still amazes me. Bear in mind (No, I'm not thinking about bears) we're driving right into the centre of the city, not just in the suburbs. Drivers here are sooooo polite. If you stop at a T intersection on a main road, they let you in. If you indicate to change lanes, they let you in. We we let someone into traffic, they always give a wave of thanks. It's just so different to Perth where some will stab you to death if you try and take "their" place on the road. Oh yes, Melbourne drivers know how to merge as well. Driving is actually enjoyable again. We actually got there about half an hour early. 😃

The girls in Radiotherapy had a spot available, so I was pretty much straight in. They know my concerns about being bolted down onto the machine now, and work as quickly as possible to set up everything beforehand, and get the mask off afterwards. They also give me a little bell to ring in I freak out. It doesn't sound like much in a room full of millions of dollars of technology, but I'm pretty sure hat bell is my favourite piece of equipment.

This whole mask thing is very frustrating. I know it's psychological, I know nothing is going to happen, but being restrained like that has been doing my head in. I won't say I breezed through today, but it was my most comfortable session so far. Whew! Maybe I can get on top of this.

My Nemesis.

Beam me up Scotty.

Now I can't see what his machine is actually doing while I'm on the bench, so I asked if I could set up a video camera and record it, expecting a firm "No, it's against hospital policy." but instead I got a "Yes, no problem, as long as the staff aren't in the video. Now I just have to find my GoPro. 

Time to head home for a few hours. As we left the car park I came up with what I thought was a really good idea. I'm starting the H2HTT Challenge. That's House to Hospital (or Hospital to House) Time rial Challenge). Timing starts as we pull onto the main road leaving the hospital, end ends when we pull into our driveway at home. I thought this will make the drive a bit more fun.

My first attempt got us home in exactly one hour, and I got lost which added a big chunk of time. I was pretty happy with that, and it was a hell of a lot of fun. I didn't think Suzanne was overly impressed though, she slept most of the way.

OK, return trip time, Suzanne piloting the mighty 1,300 cc Suzuki Ignis. Go! 54 minutes later we were at the hospital. Well done Suzanne.

For the afternoon session we snuck Vader into the outdoor area again, so he was a happy chappy. We could hear the GP cars practising, then there was an almighty roar. The R.A.A.F. jets were out practising as well. LOUD! Poor little Vader was not happy. Lots of firm cuddling and ear covering kept him OK, but he was shaken, until all the nurses came over and told him how cute he was. He recovered very quickly.

Those jets are so intimidating. I would hate to see one coming toward me in anger, but then, they go so fast that you probably wouldn't see or hear anything, it would be all over before you knew about it.

With the excitement out of the way, it was mask time again. This time was better again. I reckon I'm about 90% OK with it now. Maybe I am winning.

There was no H2HTT on the way home because it was peak hour, so Suzanne is still winning this.

Challenge accepted.

14 March 2019.

One week down, six to go.


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. 😃

Today I was going to put up a running time sheet of today's activities, but when I re read it, it was soooo bloody boring, I canned it. Trust me, you're lucky.

Today was a very easy one.

A nice lazy 11.45 Radiotherapy appointment with "The Mask" which went really well. Maybe I'm slowly getting used to it.

Then a quick nurse review. They are happy with how I'm coping and feeling, so it was all good.

It's early days yet. but I'm feeling good. None of the spoken about side effects are showing up yet, so let's hope they stay at bay for a while longer. I've completed five of thirty five Radiotherapy treatments, and two of seven Chemo treatments, so we're on our way.

As it was a quick visit today Vader came with us. We smuggled him into the outdoor area and Suzanne stayed with him while I was having treatment. All the nurses knew he was there and thought he was very cute. It was good to have him with us, he's a great little dog and makes me laugh every day. Surely that must qualify him as a therapy dog?

Then it was off to our new favourite Spanish restaurant, El Rincon, which translates to The Corner. Boring name, but the best Spanish food we've found outside Spain. The food is cheap, and comes in large portions, so it's a real bargain as well, as long as you don't have wine. Hmmmm, no chance. I even snuck in a soft as Tempranillo. Vader got some cheese snacks, which turned out to be not such a good idea on the way home Pewwwww.

If you're in Melbourne El Rincon is right near the Vic Markets.

You can check out the menu here: https://elrincon.com.au/

Tomorrow is not so easy, logistically. We have the first microwave at 9 am, then the second at 4 pm. I think it might just be worth going home and driving back. We'll see.

13 March 2019.

That was a long day.

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. 😃

I haven't been drinking since my treatment started. No one has said not to, but I think it is probably wise. Last night I decided I would have a small whiskey. I don't know if it's coincidence or not, but this morning I had a sore throat, so I think I'll leave it alone again.😔 It was a very nice Speyside whiskey too. It will just have to wait.

Peak hour in Melbourne is still way better that peak hour in Perth, at least the traffic keeps moving. It took us two hours to get to The Alfred today, not because of the traffic, but because of the distance, and we had to drop Vader off again.

Our plan today was to see the Oncologist, then have a Radiotherapy session, see the Dietitian, have the Chemo, then have a second Radiotherapy session.

The best laid plans of mice and men...

We saw Grace, and she suggested a few revisions to my medication based on yesterday's blood test. It was also decided that all my Chemo sessions would now be on Wednesdays instead of Mondays, just to keep the spread of infusions equal. That's no problem for me, but the poor girls in the Chemo unit have to juggle everyone around to fit me in. Their work never stops.

We were due in Radiotherapy, but the Chemo girls grabbed me and plugged me in. I wasn't going anywhere for a while. The first infusion is fluids with a few "extras" to make me feel better, and takes an hour. The second is the actual Chemo, and takes an hour. The third is more fluid, and takes another hour. Throw in another hour wait because I was early and my custom mix Chemo bag wasn't ready, and you have four hours in the chair. When I say "in the chair" I mean running back and forth to the toilet. One of the side effects of Chemo can be kidney problems, so the fluids are all about flushing my kidneys. Throw in three litres of water a day, and I can tell you, my kidneys are well and truly flushed. I should have the skin of a young girl by the time I finish this. I hope she doesn't want it back.

Chemo was as easy as sitting in the comfy chair and being pumped full of cancer killer fluids. Not too difficult really, in face it was actually an enjoyable visit. The nurses were a bundle of fun. While Elle fussed over me Edel told us stories about working the bars at the Isle Of Man during TT week, all in a wonderful Irish accent. She's a "craik" up. 

One of the customers, John, is a motorcycle nut so we talked about bikes a lot. Did you know two of the Dunlop TT family lived in Melbourne? I made a joke about how bad the weather must be over there for them to come to Melbourne for good weather, it didn't work.

Another customer's partner, Michael, was a larger than life guy who brightened up the room when he walked in. He went around the room and asked everyone if they wanted a coffee. At first I thought he worked there and was going to boil the kettle and make the coffees, but no, Michael went downstairs to the cafe and bought everyone a coffee. Thanks Micheal. Luckily Suzanne had bought along a box of chocolates which complemented the coffees well.

On the sad side there was a young guy in for treatment, and he had his little daughter with him. All I could think about was how unfair that is. I've had a good run, and to be honest it's pretty amazing I've lasted this long what with motorcycles, kangaroos, heart issues and so on, but his guy has it all ahead of him. Who is this God person you talk about?

Now it was off to Radiotherapy, four hours late. They'd actually called and said if I didn't get down there I'd miss out. 

As soon as we got there the Dietitian grabbed us for a chat. She was very thorough, asking what I'm eating, what my fluid intake is, how much alcohol I drink (I lied). When she asked about food, Suzanne produced her chart showing all my meals and snacks. The Dietitian was very impressed, as it made her job so much easier. She then ran through some suggestions for changes to my diet. Drink full cream milk, use real butter, lots of sauces / gravies on my main meals, eat rich deserts, meat, pasta, and fish. Pretty much everything that we're told to avoid for decades. ???????

All this focus on food is designed to maintain weight. I explained that with my reduction in alcohol, and my better eating at the moment, I thought I would drop weight. They do not want that at all. She explained that my body needed the energy to fight what's going on inside, and losing weight is a no no. She even gave us two large tins of Sustagen to add to my food and drinks. Yay! Freebies!

I am to try and eat every couple of hours, and then rinse and gargle some special mouth wash, or salt water afterwards. Why the mouth wash?

The biggest issue they are concerned about is that by the end of week two side effect number two rears it's ugly head. Blistering. The radiotherapy will cause blistering of the mouth and throat lining. Consequently you don't feel like eating anything, and you lose weight. If I lose to much, I get the feeding tube up the nose. Um, that's just a just a no thanks very much!

I have to say now that Suzanne has been absolutely bloody amazing during all of this. She's on top of my medication (I haven't told you about that yet), food, fluid intake, and everything else, without complaint. She's even remains calm when I'm a pain in the arse, which is very often as you know. Thank you Suzanne. I love you. You're still my best girl. I'll bet she cries when she reads that. I've only touched a Suzanne nerve a few times, so far. Off limits thing include:

No more jokes about Suzanne melting that microwave oven door a few years ago, and that's why I have cancer.

No more jokes about me having brain cancer, so I can get away with saying stupid stuff.

But the one that really got her going? Apparently playing the "C" card trying to get her to let me buy a Ferrari is not acceptable. Who knew?  

I'm sure I'll find some more. 😁

Most of you probably don't realise how terribly difficult this whole exercise is for Suzanne. It was just before Christmas that we lost her amazing dad Clive to Leukaemia, and the emotions are still very, very raw for all of us, I'm tearing up typing this. We spent a bit of time running Clive to Doctors and hospitals so this is all Groundhog day for Suzanne. Sorry sweetheart.

Finally it was into the torture chamber. Radiography. OK, I know it's all in my head, and totally irrational, but this whole mask thing has me spooked. Today wasn't much better that yesterday, in fact it was a bit worse. The girls took a while to line everything up once the mask was in place, and I started to freak out again. I kept it together, but only just. I asked them to turn up the music before we started, and that helped a bit. I'm going to have to ask then very politely to pick up the pace a bit I think.

The good news is that I actually only had to have one session today. The bad news is I have to have two on Friday.

During my microwave session today, I swore I could smell fried chicken, then I saw this on the wall on the way out...

"Enjoy the therapeutic Benefits of Radiography at The Alfred!

with best wishes and thanks from X (Indistinguishable) Littlemore."

Obviously a gift from a customer of the Radiography Department.

I haven't found a suitable spider for my Spiderman Radiation transformation yet, but I'm still looking. On Sunday our friend Vee said "Simon, with Super Powers, that's all we need". 

How rude!