So here I am, no longer worried about silly things like gaining weight because today I weighed in at 53.9 kg through no effort at all. Why? My husband Shaun (after only a mere few weeks of being ill) has been diagnosed with terminable inoperatable liver/bile duct cancer.
This diary outlines a day to day account of what happened and what is going to happen next.
Initially let’s go back a month or so….Shaun had increasing back and shoulder pain which he could not get on top of via physio and chiropractor, massage etc. He put it down to an old shoulder injury and tried alternative ways to treat it including touch assists via scientology….to no avail. Was on a fairly constant stream of voltaren until the pharmacist said they could sell him no more unless he saw his doctor first.
Fast forward from that he started experiencing other symptoms, night sweats, weight loss, vomiting etc….thought he had a bad stomach bug. These symptoms excacerbated and so finally he went to the doctor.
Initial Locum Doctor said “yes its a bug, here is some muscle relaxants, and some more voltaren” and sent him on his way.
No improvement except over the course of the next week he got worse, started turning yellow, rapidly losing weight, dark urine, pale stools, scratching etc….back to the doctor he goes to undergo further tests for hepatitis, leptospirosis, and other disorders that affect the liver and cause similar symptoms
All these bloods came back clear – but as symptoms progressed, Shaun underwent an ultrasound at the Hastings Health Centre….this is when they told him he had a blocked bile duct and probably was a big old gallstone! We were so hoping this was the case!
Not so easy….from ultrasound they then booked him in for a catscan. It was only then that they re-diagnosed him with a nasty 7cm localised (at least the other organs looked fine with no sign of cancer spread) tumour on his liver decompressing his bile ducts.
Official diagnosis is bile duct cancer but I guess that comes from the growing tumour on his liver decompressing the bile ducts to some extent (excuse my lack of medical knowledge at this point). Official name: cholangiocarcinoma
Results from the catscan were basically summed up as follows:
CT chest/abdo/pelvis: Heart and mediastinum appear normal. No enlarged mediastinal or hilar lymph nodes. The lungs are clear. No suspicious focal lung lesion. There is an ill-defined low density 6 cm mass lesion in segment 8 and 4 of the liver. There is marked intrahepatic biliary dilatation, more of the left system. The common duct is not dilated and difficult to identify. The gallbladder is decompressed. No radiopaque calculus is noted. The portal vein is patent. Celiac trunk, SMA and IMA appear normal. The pancreas appears normal. Spleen, adrenal glands and kidneys appear normal. There are subcentimetre up to 6 mm a enhancing lymph nodes in porta hepatis and along the celiac axis. No enlarged abdominal pelvic lymph nodes. No free fluid. No gross bowel abnormality. No suspicious focal bony lesion. No evidence of distant metastases.
Comclusion: Large liver mass and intrahepatic biliary dilatation down to the hepatic duct junction is very suspicious for malignancy such as cholangiocarcinoma
After that, the medical powers that be decided perhaps Auckland medical specialists could operate on the tumour and try and remove it….they sent Shaun’s notes to Auckland to ascertain what could be done up there.
During this time Shaun was admitted to hospital (a week ago now as I write this) for a bile duct drainage process where they put a tube down into his liver and drain the bile out through his body via a tube / catheter into a bag. This doesn’t come without its own set of risks and infection soon set in (common in such procedures) and so Shaun was put on multiple courses of antibiotics as well as other intravenous drugs including opioids, drugs to calm the stomach and reduce acidity, drugs to aid in resultant constipation, drugs for this and drugs for that…a constant, constant stream of medications.
Of concern also was that his bile was not turning a ‘black gold’ colour as it came out of his body and down the catheter into the external bag and was too light which eventually rectified itself.
Basically (information from doctor internet here) – “if the bile duct becomes blocked, the bile cannot drain normally and backs up in the liver. Signs of blocked bile ducts include jaundice (yellowing of the skin), dark urine, light stools, itching, nausea and poor appetite. Inserting a fine plastic drainage tube (catheter) through the skin (percutaneous) into the obstructed bile duct, past the obstruction and into the duodenum (intestine). This relieves the congestion in the blocked duct by allowing the bile to drain externally into a collecting bag as well as draining internally in the normal way.”
On Thursday 3 December 2020 Shaun was told his tumour was inoperable and therefore terminal ultimately (no time frames are given in these instances for length of life left) – and his only course of action was chemotherapy to prolonge his life as radiation could not be performed either.
Also he will undergo biliary stenting ie (excerpt from doctor internet here) – ‘sometimes the biliary drainage procedure may be extended with the placement of a permanent plastic or metal stent across the site of the bile duct blockage. Stents are usually inserted a few days after the initial drainage procedure and they keep the narrowed duct open without the need for a catheter’ (catheter I am assuming is the tube leading to a bag as Shaun has currently).
On Friday 4 December (today basically as I write this) Shaun will undergo a biopsy via catscan procedure so they can take a sample of the liver and see exactly what they are dealing with in terms of the type of cancer he has.
Stenting involves dilating a segment of bile duct to open it up basically…I don’t know the ins and outs of such a procedure but I am sure I will find out more in days to come.
So this is my story from hereon. You can be rest assured of regular updates from here, even daily now. I’ve gone from blogging once a year (!) to now feeling like I must have some control over my life and my husbands and blogging once a day from hereon I hope.
I’ll be in touch later on or tomorrow with an update. This is where our lives change forever.
