Aug 25 - a quick post about sustenance

 

This stuff is disgusting!

I had a dilemma at the pharmacy, chocolate or coffee (1st world problems right there)

As you can see, I went for coffee. Its still disgusting. Imagine the weakest, sickly sweetest, blandest Nescafe you've ever had, then dilute it some more. The only, and I mean the only, way I can make this stuff remotely palatable is to add a shot of espresso. Or two.

But I did make a concession - I'm using decaffeinated to make the espresso.

I am forced to consume this.... abomination... because I can't manage more than one meal a day, and many days not even that. So, I have to add this, this, whatever this is.

I have to admit, it's filling. I feel full afterwards. I can feel it travelling through my intestines. Bloating and gas are par for the course these days (don't sit in a car with me if you value your olfactory system) At least it doesn't give me constipation, actually it don't look all that different on the way out than it did on the way in. Sorry about that. (Not sorry)

So this is my cuisine now. Milo in the morning. Soup or steamed vegetables for lunch. Sustagen in the late afternoon. Maybe some crackers in the evening. And jellybeans. Ginger beer cordial for fluids, to help with the nausea. It's not great, but its keeping my energy levels manageable. I don't know about my weight; I don't dare check. It can wait till my next hospital visit.

 

Aug 19 - reality check

Kniphofia, aka Red Hot Poker, tough South African native so does well in our climate. Have a wild guess what I'd like to shove a red hot poker up...

Today I cried again. I managed to restrain myself in the oncologist's office, but I kept having brief moments up in the infusion centre. (Under control though, I turned away so the nurses couldn't see while they attended other patients, and had wiped myself dry by the time they got to me) 

So, what prompted all this?

Let's go through the facts:

Yesterday's scan showed little change. The primary maybe a little smaller but the secondaries either the same or marginally bigger. Overall a 9% rise in tumor measurements, compared to a 14% fall last scan (so technically I am still ahead you big baby) But my blood tests are all worse, more anemic, liver markers in the hundreds and so on

Of most concern is losing 4 kg over the last 3 weeks due to loss of appetite. Here's a new definition of see-food diet: you see food, and walk away... And the fatigue. And the nausea. And the fevers. And the pains. And the drama queen basking in her moment of glory...

Now I was hoping it was those fuckers just releasing toxins as they fight the chemo, or side effects of the chemo itself, but the oncologist felt it was more likely neurobiochemical changes induced by the cancers, especially appetite loss and "cancer fever" What they call "burden of disease" A much kinder way of saying it than "you're losing the battle" which is what it means. So, I stepped on the landmine I placed in front of my oncologist, and we discussed my future. 

The devastation of Mordor. 

Chances are, I'll hit a clinical "tipping point" in 3-6 months. Chances are, by the time this treatment is abandoned, I'll be too unwell for further trials. At which point I will be looking at palliative care, eventually hospice, maybe by early next year. She looked so sad, telling me this, face downcast, voice lowered, hands clasped in her lap. And what did I notice? Oh look, I have the same carved clay scroll statue of the Hippocratic Oath that you have on your shelf...

So, quite confronting, and my rationalisation for all the waterworks 

I am such a fuckwit. I mean what did I expect? That there was ever going to be any other way this would go. Time to come away from la la land and just get on with it. Step by step, day by day. Grow a set. Push back a little. Stop feeling sorry for yourself.

Aug 05 - a day in the life of

I think I've settled into a pattern, hospital infusion, blood tests, pain episodes, constant fatigue, poor appetite, its all become rather mundane and routine... 

Odd thing though, for the last few weeks I've had this cough, those of you who've spoken to me on the phone will recall it's mainly when I talk. The team thinks it's laryngeal. So yesterday off I trundled to the respiratory physician, who promptly referred me to ENT because "this isn't asthma" (I had normal chest scans as well, so it wasn't anything else either)

But then, he started talking about bronchoscopy and lavage (sticking tubes into my lungs and collecting samples via washing fluid through the bronchial tubing - basically a mini drowning) I sat there with a fake smile plastered on my face, gritting my teeth...but inside it was like No. No dude. Stop talking. 

I. am. not. having. another. invasive. medical. procedure. I'm just not.

I was upset.

I went to bed perfectly fine.

I did not wake in the same state. 

Cramps. Low abdominal cramps woke me up. I stumble to the toilet. Waves of nausea. Cramps getting worse. I wanted to curl up on the floor, but I figured I better stay on the toilet, in case something came out. The pain was enough to make me nauseated, but luckily it passed. As if nothing had happened. I went back to bed.

It's going to be a bad day...

20 minutes later, bang, I almost didnt make it to the toilet, 5 steps away. These cramps were bad. I mean, we've all had cramps but this time I felt like collapsing, which was new. The dry retching was an added bonus. In amongst all that, I managed to pass a couple of rabbit pellet droppings. WTF?

So this continued another 4-5 times every 20 minutes or so. Some rabbit droppings, some vomiting, cramps. Ho hum. I stayed in bed. After midday. 

Until.

I think the solids finished. Then the dam broke. Boy, did the dam break. Toilet bowl looked like those volcanic mud pools at Rotorua. Relief. So that explains the cramps, I was banked up with nowhere to go. Well, shit.

As a foolish medical student, I was always amused how fixated older people were on their bowels. Who's laughing now?

The afternoon has been better, no more episodes, I've drank some fluids, nothing solid today (the very thought makes me nauseated)

I'm going to bed soon, we'll see what the night holds...

Of course, as soon as I finished writing this piece, I lay down on the sofa,and promptly vomited. It's going to be a long night after all.