Amidst the hope and jubilation suffusing the world of Hep C treatment at present, I think it might be time to temper it a little by recalling those for who the treatments have come too late.
On Thursday, I attended the funeral of an old and valued friend. We’d known each other from primary school – I was even with her in a group First Communion photo displayed at the wake. We re-engaged by total accident in our early twenties when I fell in love with her sister. Then we shared our grief when her sister died before her time. My friend was a hard-thinking, caring, creative soul with a strong-willed daughter in her early teens. I was gutted to learn that she had died, and had been hiding her battle with liver cancer for the past two years.
If only her liver had held out a little longer. In time for the new drugs. But the universe deemed that she would dodge that magic bullet. And she, of course, is not alone in that.
In my previous post I spoke of the challenges facing our medical establishment if they’re to meet their self-imposed target of eliminating the disease by 2030. I discussed possible routes towards this goal, but I didn’t mention the fear factor.
At this point tread carefully if you are squeamish.
Hepatitis C is a slow working disease, but that does not make it any less lethal. Its symptoms, prior to the development of cirrhosis, are sometimes subtle, sometimes not, but they can change the arc of your life and usually not for the better. Then, once the liver becomes cirrhotic, the shadow of hepatocellular carcinoma looms – and this is one of those cancers which just love to metastasise (ie colonise the body at large).
Sufferers of liver cancer still have hope. We have many ways, new and old, of attacking it and there is a certain success rate – but it is by no means a pleasant experience and requires one to be monitored indefinitely. If this fails you may find yourself in the donor organ raffle. If you’re lucky you may live on with diminished capacity. If you’re not, you will die.
Horror takes sway as one enters end-stage liver disease. At stages III and IV the cancer may have spread to your bones, lungs, lymph nodes and blood vessels, causing any number of unpleasant symptoms. You will likely develop ascites, a condition in which fluid builds up in the peritoneal cavity generating a pot belly of often grotesque proportions. Patients experience extreme fatigue, weight loss, nausea and vomiting. In some cases a generalised itchiness is experienced which I imagine may be akin to Chinese water torture.
Then one may experience hepatic encephalopathy. As the liver fails, toxic chemicals (particularly ammonia (hyperammonemia)) may build up in the brain resulting in confusion, delusions, hallucinations and sometimes coma. Paired with high anxiety levels, fever and an inconsolable restlessness associated with end stage liver disease this must be a terrible experience indeed. No peaceful death here. It’s no wonder patients sometimes shout and scream in their final hours.
And of course there is pain. Pain upon pain. Whole body pain. It can be medicated to some extent, as we know, but if it was me I would prefer, at this stage if not before, to be medicated out of existence.
Sorry to subject you to this nastiness, but just once I feel it’s worth reminding people what we’re fighting against. It’s something people who have not yet been treated should keep in the back of their minds and why it is so important to educate HCV positive people on the treatments now available.
It’s natural to veer from such uncomfortable facts when we talk of Hep C, but I worry that it may lead to some level of complacency. To inaction right when action is called for.
We ought never forget that we’re dealing with a monster here.
The Golden Phaeton