Sunday after Grand Final Day, 2023, Acute Pancreatitis
Looking back, that was the first symptom, all the scans and biopsies stem from that episode, so I use that as my starting date, despite not receiving a formal diagnosis until July 2024, after the fucking thing metastasized and the penny dropped...
Monday this week I had my review scan, Tuesday my oncology review and infusion. There is little change in most of the metastases, except for the coeliac lymph nodes, which are just slowly growing, week by week. Shehara, the oncologist says this isnt unusual, nodes often tend to be less responsive, but admitted there simply isnt any data on my type of tumour, I happen to be the second case she's seen in 5 years, it's that rare. 😔
We now have a dilemma. There is some concern about these nodes, and we discussed whether I should have top-up radiotherapy (as the side effects from the nodes could be nerve pain, stomach not emptying, vomiting, worsening appetite - it all sounds a bit too familiar) Anyway, the problem is, if I have radiotherapy, I might have to come off the trial because protocols dont give us wiggle room. Anyway, she's going to speak with the trial co-ordinators to see what our options are. For the moment, the decision was to continue as we are going. I agree with this because as far as I can tell, this treatment is keeping everything else under control. Sort of.
Another disappointing aspect of Tuesday's consult is that I continue to lose weight, despite the pancreatic enzymes. I have lost 10kg since the end of May, when I got my first dose, which means they had to decrease the dose of the infusion. Given what I describe above, this worries me in case it is now less effective. Catch 22.
A lot to mull over the next few weeks...
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I've had a really bad day today. What motivated me to write, but be warned, it's unpleasant. If you dont want awful gross details about body functions, don't read on. I mean it. Jump to below the next dotted line
It's definitely TMI, but this is my reality...
Those who have spoken to me recently are aware of the cough I get when I talk, and the ENT feels it is nerve overstimulation causing it. So I have been on codeine syrup 5 ml twice a day for the last 10 days. Codeine causes constipation, so I have been taking laxatives as well. (Seriously I have 6 different types of laxative at home, I could start a chemist shop) Anyway, I already dread going to the toilet, since I'm barely eating any solids, so it's hard to get anything out anyway and it hurts far more than it should. I've been practicing the giving birth method of breathe /push/scream...
So, this morning I felt the need to go, and it was there, but I couldn't get it out. After a while I calmed down and gave up. A little bit later, I needed to go again, this time I put some vaseline in the region, to help lubricate, but again, I couldnt get anything to come out. Settled, walked round a bit, felt the need to go again. This time I put a glove on, and some KY jelly. I managed to pick a couple of pieces off the turd that was there, but the main bulk stubbornly refused to budge. I started having visions of needing to go to hospital for disimpaction, an option I just couldn't face after only 48 hours of not passing! Anyway, I slowly settled everything down, cleaned up, walked around a bit, till the urge came back. I was determined by now, gloved up, KY applied, push, dig some shit out, push more, dig more out, till I eventually pushed it all out. There I am on the toilet seat, bawling my eyes out, partly because of pain, partly relief, but mostly humiliation. Humiliation at what I had just done, the indignity, the inhumanity, the disgust. Just crying. 90 disgusting minutes to pass a turd....
You know what? Fuck the codeine. I'll stick with the cough thanks.
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But wait, there's more...that was just the morning. Mum rings me to go over for lunch, she's made spinach-rice (spanakorizo) which I thought I could eat. I wander over, the morning forgotten. Sure enough, it was beautiful, but I could only manage one quarter portion. So we decided lets try a cheese toastie so at least it can be a meal. No sooner had I consumed the toastie, and a glass of water, I vomited. It was so sudden I didn't have time even to get up, luckily I got most of it in the plate, but still, the dinner table didn't look great. I managed to get to the sink and well, brought up the rest of the day's takings....not great. I can't describe the look on my poor mum's face...
So, this is my life now. It's crap. 18 months ago I was working, consulting, problem solving, advocating. Happy at work. Now I'm spewing willy nilly and picking stuff out of my own ass, too weak to do anything.
I seriously don't know how much more of this I can take. I'm getting close to the end of my tether.
Yes I am trying to be practical. (eg play around with the medication to address the constipation) Yes I'm aware of my tendency to histrionics. But this is just draining, and things are happening more and more frequently. It's not just that it makes me feel low, it's the added humiliation, the indignity of stuff like this. Knowing that soon enough I'm going to need nursing care, that strangers are going to see me in this state. I just don't know how I'm going to manage that.
