Mar 31 - polka dots

 

Here is a picture of a slice of liver from my latest CT. Those little black marbles are new. Apparently in 3D, I have an estimated 20 new metastases. Well, some little cherub has been busy the last 3 months!

Polka dots. Little did I know that the polka dot wrapping paper I used for my niece's birthday present last week would turn out to be so prophetic. I like how the Universe works, let's call it polka dot symmetry. I am quite amused!

Sadly, I couldn't find an image where I could join the dots to make a representation of Charon's face (aka the Grim Reaper). That would have been so cool!. Metastatic pictures! Then again, I suppose I am not ready to stand on the banks of the River Styx just yet...

So, what did we discuss at the oncologist today?

I have 3 options

a) stronger chemotherapy - I pointed out I didn't have much faith in that, and apparently my tumour type isn't that responsive (No kidding Sherlock!) Option Rejected.

b) get more tissue, retry the genetic analysis, 25% chance some mutation could be found for novel therapy

Unfortunately, will need a liver biopsy to get the sample. I recall how awful that was. I almost shit myself in the machine. There's a whole lot of logistics that need sorting with my other medical conditions, but, Option Accepted, I want to give myself a chance at living a bit longer.

c) enrol in drug trials for novel agents. Apparently there's some antibody work going on that looks "promising" (yeah, doesnt it always?). Option Accepted. A No Brainer. I am awaiting details for an appointment with a "Clinical Trials Specialist" (there's such a thing! Mindboggling)

So, after a month of relative quiet, things are going to get much more interesting. I can't get off this train now...Tally Ho!

Mar 25 - it hits the fan - splat

It's funny how you just know things ain't right. You just know. Had my scan yesterday, follow up appointment due next week. It can't be good when the oncologist rings the very next day.

At least the mystery of my pains that I wrote about last entry has been solved. The good news is that the original tumour has shrunk, so have the Twins. However they have been busy. Naughty Twins. Apparently my liver now has numerous metastases (I didn't ask exactly how many) Too many to try radiation again.

My only choices now will be a different, more toxic chemotherapy or enrol in a clinical trial (so being experimented on) Sophie's choice.

He wanted to move my appointment forward to discuss, but I haven't done my bloods yet, and really I don't see the point, what's a few days wait going to change? 

Besides, I have my niece's birthday on the weekend and it can certainly wait till after that. Otherwise I'll be po-faced and that won't do. And I think I prefer a teeny bit of peace for the moment, to get my bearings.

So I have a few days thinking to do. What a choice...

The probable insertion of a central access port, followed by poison infusions (and if the last lot was considered mild, well, fuck me) OR likely liver biopsy again, followed by experimental drugs with unknown efficacy and side effects (again, F*** me) OR to Hell with it, do nothing and let myself go (again, you guessed it, F*** me)

Haven't told the family yet, I want to wait till I've made a decision, so don't mention it!

Sounds like the time to go lie on the grass and look at the clouds. I suppose I should get used to that.

Mar 18 - and so it begins

Yesterday I was lying on the sofa, watching a SF movie on TV, and I got a right sided pain in my lower ribs. I initially thought I was lying funny, but I couldn't get it to go away with moving and stretching. Now I've had niggles like this over the last week, but not persistent like this time. It was hard to take a deep breath and I had to walk clutching my side. Took some panadol and went to bed, eventually drifted off but it was uncomfortable. I don't think I tossed and turned as much as usual.

This morning, it's still there. Maybe less intense, but I can feel twinges in my right shoulder as well. And on the left lower ribcage. Still hurts to breathe deeply. 

The penny drops. 

Liver pain. It reminds me of the post-op pain when they took my gallbladder out. It's those damn twin metastases in the liver. Danny (deVito) and Arnold (Schwarzenegger) (from the movie Twins - which I've never seen by the way, I need to look up if it's streaming somewhere) 

Are the twins growing or are they in their death throes? The radiation oncologist did say it would take 6 weeks plus for effects of the radiation, and the time scale is about right, so maybe it's the latter? But, hey, we know what my luck is like...It's more likely the buggers are growing and giving me the finger.

I am amused at the timing. After my last post, it's like the Universe is saying "Oh, so you like nice things? Well, we cant have that! Here, take this!"

My body scan is next week. I guess I will find out. But I am worried it's going to be bad. I think I'm screwed. Maybe I'm just histrionic and catastrophising but you know, sometimes you just have that feeling....

I worry it's the beginning of the downhill slide. I imagine they'll want to do a liver biopsy again (I really don't want that, it was the worst experience - see post Aug 01 2024, liver joins the party)

I worry about needing painkillers. I worry about misery and suffering. It's beginning to be..real

I think the time has come, I obviously don't need it yet, but the time has come to actually read the voluntary assisted dying legislation. 

Re-reading the post, I thought, melodramatic much? But I'm going to leave it as is.

Mar 17 - the things we do

This is a hard topic to write about, I thought long and hard about whether I should do it, but I want to write about intimacy. In my context, my vulnerability.
Some of you may know, I'm single, have been for most of this century. In fact, haven't even been close to another human being for all that time.
Social anxiety sucks.

So, this weekend, I did something perhaps inevitable. The mysterious universe leading to this point. I somehow got the courage to hire an escort.
Before you say anything, walk with me, think with me...
1) I'm dying, chances are this time next year I'll be making compost. What am I going to do, go on dates? "Hi, my name's Jim, I'll be dead soon, would you like to dance?" I can see that line working beautifully.
2) I'm still human - I have feelings and desires. I bleed. I cry. I yearn. Isn't feeling loved a fundamental human need?
3) I'm scared. Shit scared. Of what's coming.
4) Not to mention the eternal loneliness.
What would you do?

Interestingly enough, I've worked with many escorts professionally, from the other side of the fence, giving advice, testing etc. Students. They were all lovely people. 

The person I invited to my home was no exception. A kind soul, understanding, thoughtful, gentle, perceptive. Certainly no airhead, didn't miss much. Calmed my skittishnesss with professional ease. Someone who would have made a wonderful friend had that been possible. Maybe the universe finally decided to give me a break?

It was so incredibly nice to be held in a warm embrace, hearts beating, gentle kisses, bodies entwined.
It felt so comforting to feel wanted, to feel close, to feel loved. I shut my eyes and let myself feel. Just for the moment, no pain, no fear, just love. The romance novels all talk about time and space ceasing to exist and reality condensing down to just 2 people in a bubble. It really was like that.
In the back of my mind, I knew it wasn't actually real, but it felt real. It was enough. Enough that I can face the future feeling a bit more whole, and with a bit more courage. Thank you.
The biggest surprise from all this, sex turned out to be the least important aspect of the whole experience. The power of love indeed.

I know this post is mushy, and will be distasteful to some, but folks, it's my journey, I am who I am, take the good with the bad.

I think those of you who are married, in relationships, who get to experience this all the time, you don't know what you have, how lucky you are. Don't let it go. I got it once in a decade, and I'm amazed...

And yes, I know all I had was an oxytocin surge, which is such a sad way of looking at it, because it felt so damn nice!