Tuesday, December 23, 2008

Coal In My Stocking

For the past week or so, I've had more nausea and stomach pain than usual, but I thought they were just side-effects of the drugs I'm on or the cancer cells taking nibbles at me. I went to see the doctor today to get a post-chemo blood count (counts all good - yay!) and asked about my symptoms while I was there. I asked if the pain and nausea might be due to ulcers caused by the steroids I've been on since August - a long time to be on steroids. I suggested we do an endoscopy to find out.

She said that if an endoscopy showed I had ulcers, the treatment would be Nexium, Zantac, and Maxolon - drugs that I'd already been taking, which didn't work. There was a chance that it was a different kind of ulcer caused by the Helicobacter pylori bacterium, and if that were the case, the treatment would be two antibiotics and a "proton pump inhibitor", a type of drug that reduces gastric acid production in the stomach.

An endoscopy costs S$300-400 (US$200-275). I didn't want to spend that kind of money.

Then the doctor did a physical examination to locate exactly where the stomach pains were. Luckily, I'm a grown-up and can be a bit more precise than "I have a tummy ache." As she tapped away and asked for my responses, she started shaking her head. Her conclusion? It's not an ulcer at all. It's my liver. My biggest worry.

Liver failure, apparently, is the most painful way to die. If you die of lung failure, there's still a chance you can expire with grace and dignity, like in the movies. Deep breath, gentle closing of eyes, quotable sentimental words, then fade out to black. But with liver failure, there's groaning and moaning, agony and excruciating pain. So unladylike! Not to mention the trauma and stress on the family.

So here's our situation at the moment. My liver's not doing so well. I'll have my liver scanned with an ultrasound when my regular oncologist returns from her vacation.

Meanwhile, the only thing we can do is treat the symptoms. We've now upped the anti-nausea ante to Motilium, and if that's not enough, I have Kytril as a back-up, but these tiny pills are S$30 (US$21) per pill! Now that hurts! For pain, I've now moved on to morphine from the codeine-paracetamol combo I was on. Let's see if these drug changes make any difference. I used to be so adverse to taking pills for any reason. Now, they're my main source of food.

Today, I actually ingested more pills than food. No kidding. Food tally: about four noodles (not bowlfuls, but actual strands of noodles) with two small squares of cabbage in a clear broth, one bite of pizza crust, and two digestive biscuits. Pill tally: more than 20 pills for seizures, pain, nausea, breathing problems, hand-foot syndrome, protein support.

A friend of mine got laid off last week and I told him the timing really stank. Who would fire somebody just before Christmas? He said, "Well, it could be worse. I could have cancer." Now here I am with some lousy news. Well, it could be worse. I could lose my sense of humor and think my friend's comment wasn't funny. Now that would be truly tragic. But he made me laugh. Hey, I can still laugh.


lisacc said...

Dying of liver failure should not be at all painful if pain is properly managed. My mother suffered minimally. It wasn't nice for anyone, but it definitely wasn't some drawn-out, ghastly agony (except emotionally, for us).

What you do need is excellent and *early* pain management, such as a morphine pump.

You also need to make sure you have excellent nausea/sickness management, as the pain management can increase nausea (I am sure you know this Shin, but others reading may not) and nausea causes lots of extra complications, not least problems with taking other medication because you can't keep it down.

You may also find anti-worry medication very useful, though it will increase the sleepiness effects of the other drugs.

You need to be monitored EVERY DAY by nurses visiting your home, if you are at home, and if possible twice a day. Even here in the cash-strapped UK NHS they have home-visiting "twilight nurses" (for the late evening shift) and night nurses from midnight to dawn. We didn't need them, as it happened, but it's important to know they are there.

The other thing is that if you have a liver blockage (eg a tumour) then you can have a stent put in and liver function returns pretty much to normal. But get this done EARLY. That is what my mother had back in March/April, and it is the reason she lived another nine months. She was effectively dying of liver failure in March, but the stent reverses this as it allows the liver to function.

Unfortunately she did have to wait nearly a week longer than intended to get the stent (Easter delays) and those few days were very uncomfortable, debilitating and weakening for her, and the reason her first chemo session had to be delayed a couple of weeks.

I am very sorry to hear you are in pain anyway, and if the above is too detailed to post then please don't feel the need to, but I really want to reassure you that you should not be facing any painful ordeal if medical science is properly applied.

Michelle Ring said...

A constructive and really useful comment.
Thanks for writing all this down.
I agree with you, we'll manage this right and Shin will have plenty more time and plenty less pain.

Fleur said...

Hi Shin,
Thank you for sharing. For me, my tumours are also in my liver. I am very frightened to reach end stage, with the pain and nausea.

Please stay strong.


Dear Lisacc,
Thank you for sharing the information as well.