26-2-19 11am 

2 weeks in . . . 

Here I am sitting in a courtyard at the Alfred after dropping him off to have a PET scan which will show all the fast growing cancer cells in his body. They will inject him with a glucose laden radioactive liquid which will attach to fast growing cells and show up on the scan, basically where to aim the radiation. He has to lay still for about an hour to let the liquid travel through his arteries. Then he will have a head brace put on and he will get scanned.

I wandered around for a while after dropping him off, a bit foggy headed, should I have stayed in the waiting room like a doting wife? he's been fasting since midnight, should I get him something to eat? Maybe some retail therapy will make me feel calmer? they have a craft stand near the entrance . . . 

I’m starving too! and I need to pee.

Sorted. Sushi and a place to sit outside in the sterile concrete courtyard of the hospital, where I can stare at my laptop screen and avoid eye contact with other humans . . .

I have often thought that I should write in a journal, you know, to keep a record of all the wonderful adventures we’ve had. So our offspring can read it in years to come and smile lovingly.  He wrote a blog when were travelling overseas, he was most dedicated. I was ho hum about it at the time, now I love it and often go back and read through it, and marvel at the places we’ve been and the experiences we've had. 

I have friends who have gone through this Private Cancer thing, and they have kept me informed via social media, which I was most thankful for, as the last thing you want when you are first dealing with PC is for loads of people calling, texting, social media-ing you every single day because they “haven’t heard from you and wondered how you were coping". At least that's how I feel, perhaps I am different to some? Everyone means well, they all have hearts full of love, but sometimes you just cannot talk, even via technical devices. 

I am a most fortunate human being, my friends get me, they understand that sometimes I just can't chat and that I need to have space to just be. Be me, whatever the hell that means. I adore that about them, I am a very lucky girl to have them in my life. This is one of those times.

Strangely I feel compelled to journal this shit fucking Private Cancer thing he has to go through. I don't want sympathy, nor does he, I want to document it all for our own benefit and for anyone else who might have to go through it . . . . who knows, it may help, it may help someone.

We were given a form to fill out by the Nuclear Medicine receptionist who had a totally inappropriate shirt on, not the shirt actually, the way it was worn, it was unbuttoned way too far and revealed a sexy undergarment and a bit too much skin. I could almost see all the way to the ground via a cleavage . . . Perhaps I was in a grumpy mood? less tolerant than usual? maybe it was deliberate to take our minds off other things? . . .  Nope. He mentioned it as well when we left, he was not impressed either. It did made us laugh, maybe that was the point?

We filled the form out, most of the questions we couldn't answer, like when did you last have "this" done, and "that" done, who can remember all that shit, I prefer not to, and what time of the day 3 years ago did you most often poop . . . really?

Maybe by journalling it will help me have a focus each day, or help me to relax somehow, or maybe it will stress me out feeling like I must must write, or maybe at the end of all this we can read it back and remind ourselves how scared and nervous and angry we were. Or maybe it will just disappear into the internet void never to be thought of again. Who knows. 

So what happened?

He has had a chronic cough for decades, no doctors have been able to pinpoint why, a strong course of steroid tablets, every few months over the past few years is the only thing to get rid of it. You shouldn't really use steroids over and over, they are not flash on your body. He has had a very sore throat in recent months, hurts to swallow, hurts to eat, and he has been coughing up blood, didn't tell me that. GP sent him off for a CT scan and then referred us to M. Taylor Ear Nose & Throat guru. Taylor said right up front, "we are not here to cure your cough, that is likely to be something else". . . . .  Taylor laid it all out for us, even before he had done any investigation, it appears to be a tumour, he said, you can see it on the scan. Taylor did 3 biopsies of the base of his tongue under a general, and summoned us back to the office a week later. Yes it is cancer. Yes it is serious. Yes he will die without treatment. Yes we can cure it, we do it all the time and as he is a non smoker his chances are waaaaay better than someone who is a smoker, or has been. 

He grew up in a house where his dad smoked inside, all the time, and had mates over for lengthy meetings, who also smoked heavily, inside. Who knows if passively it has affected him? Back in the day we all went out to clubs and pubs and smoked inside, on planes, in restaurants, everywhere, work places were full of smoke. Think of all the passive smokers out there. So sad. I apologise to you all. This Private Cancer should be mine. Not his. I was the smoker for fuck's sake. 

Taylor explained the process. It would be rough, he said. 7 weeks of 5 days a week, once a day radiation and on one of those days each week chemo as well. If there was a public holiday then he would have 2 lots of radiation on one of the week days. A low dose chemo with little chance of side effects other than nausea, and almost no chance of peripheral neuropathy which he was most concerned about. That's where your hands and feet go numb and it can be irreparable. The first week you may feel nothing, the second week you may become a little tired, third week mmm maybe you will feel shit, 4th 5th 6th 7th who knows as everyone responds differently. The worst case scenario is that you will lose too much weight because your throat has been burnt away like nasty blistering and peeling sunburn, so you don't or can't eat, then we will put a feeding tube down your throat or directly into your stomach. He didn't like the sound of a feeding tube and later made me promise to remind him of that when he refused to drink his lovingly made high protein super calorie charged banana smoothie. I promised. 

Off to the Alfred to meet with a radiation guy who outlined the treatment further. Radiation guy was most interested in the rare blood cancer that he has, Mycosis Fungoides, which presents itself in his skin. It's thankfully a slow growing one and has been around for decades. He manages it with steroid cream, yes again with the steroid use, and the occasional radiation or PUVA which is like a tanning bed set up, but much stronger. Radiation guy said we should definitely go visit a dermatologist here in Melbourne as he thinks they may be able to help him more than the docs have done so far in WA. Will look into that in the future. See I knew there was a reason I was writing this down.

He then had a head mask brace thing made, as in a full on cast of his head made by pressing sheets of moldable plastic over the back of his head first, then over his face. They do ask if you are claustrophobic first. He is not. The mask brace thing is to wear when he is having radiation therapy as they pinpoint the exact tumour and blast the fuck out of it in the hope that it dies and shrinks away. They want to avoid hitting any surrounding things like saliva glands, throat muscles, lymph nodes etc  . . . .  imagine not producing enough spit ? or not being able to swallow? nope. Not imagining.

Last year when we decided to buy a house up in the Dandenongs, we didn't look into where the closest Radiotherapy unit was? why the fuck would we? We are only 60 !! too young for all that shit.
It's a 2 hour drive to the nearest one. Yep. 2hrs there and 2hrs back. No he can't stay at the hospital for the 7 weeks, he isn't that unwell. Thousands of people do this every single day around Australia, the travelling to and fro for Private Cancer treatment that is. Thankfully we have a car and are capable of driving ourselves. Others are much worse off. "get over it!" as my mum would say.

Our most recent appointment, yesterday, was with another Radiotherapy doctor, Grace. Lovely young girl, well she's probably 35 but I still think that's young. She went over everything, paid a lot of attention to his frame of mind, his support system, how he was getting to the Alfred. Who was driving. Grace was great, and gave us a number for the Patient Liaison Officer, they can help where no-one else can, if we have any dramas with appointments. Grace outlined a few things that he may use further on in treatment, like morphine, throat numbing liquids, and other stuff  . . .  I think I blurred out and didn't hear some of this convo, this has been happening a bit lately, it's good having 2 brains at these appointments, what he doesn't remember I do and vice versa. Sometimes.

So here we are today . . .  I have moved inside, the concrete garden has been lovely, but I need power for my laptop if I am to continue this writing thing . . . . . . . a side thought . . .  I wasn't allowed to stay with him while he had his scan, I asked, they said no.

The noisy, smelly, icky cafeteria has a few power points thankfully. I found a spare seat at the window, overlooking Punt Road. Punt rhymes with cunt. You cunt Private Cancer. 

Time goes by as I stare at random people and stuff . . . .  He will almost be finished upstairs on Level 1, Nuclear Medicine . . . so I will get him something to eat like a good doting wife, head on up and sit gracefully with all the other miserable people in the line of uncomfortable chairs looking towards the reception area where their loved ones will emerge after having been poked and prodded and reminded of the shit that they are going through. Fortunately there is a sexy cleavage to stare at . . . . Fuck you Private Cancer.