Metastatic liver cancer

Lord of pain…, Lord of cancer… My believe in the Lord has been scattered a lot since father is suffering from secondary liver cancer.

Personally I find the Lord a big coward for not wanting to show us where the primary cancer is. Why are we not at least given a fair chance to beat the cancer?

Disney World Vacation

Today we took father on a vacation: not to Disney World, but we visited:

• the jewelry shop to tighten father’s wrist watch (the cancer is eating father up inside out). It was great to see how father recognized and started conversation with 2 other elderly people in the shop. Short conversation, but what more do we need than hello how are you, long time no see, oh, you also forget things?
• another elderly friend and
• yet another elderly friend of father.

Father was exhausted after his visits, yet it seemed like a day well spend. Not like the endless running around in the house, not knowing what to do (father was much more an outdoor person).

Cancer | Disney | Lord?

So what is the connection between our Lord, Disney and cancer? Well, I just read Colin Sullivan’s post about his Crip Trip Disney World vacation: how he thanks the Lord gave him the strength to go to Disney in the first place.

Colin lives with chronic pain after 3 back-surgeries and writes about his life in Chronic Pain Lifestyle.

Similar in Colin’s life and father’s life there are 2 options:

• sit back and do nothing
• take a chance, enjoy a few seconds and face the pain or exhaustion later (no pain - no gain, sadly but true…)

It sounds like choosing between a rotten fish and a rotten egg to me, but it showed on father’s face that what I think is wrong. Similar how Colin doubted himself: should I go or should I stay… and after he went: Hmmm, I will do it again.

Young and the restless

Restless: in father’s case: running around without a purpose in the house must make him freaking mad ("restless" they call it in decent medical terms, Risperdal they call the solution).

Yet the fresh air in a cold yet sunny ’spring-day’ today and visiting 3 different places has much more benefits and not a single restless symptom.

As said before:

a cancer patient likes the things he did before he got the cancer.

A day at the zoo

When you go to a Zoo, you pay entrance and you are so kind to pay for food to feed the animals.

Opposite today: Our at lunch visitors: free entry, no food…

Today’s cancer story…

We had some brothers and sisters from father on a visit. Saying: oh nice, you are all eating together… Now the hospitality in fathers house has always been: who enters during lunch or dinner eats with us.

Yet what made mom’s blood cooking was: oh nice, you are all eating together.

Looks nice if you don’t see that:

• father woke mom up from 3 to 5 am and from 7 to 9 am (not to listen to fathers talking but to follow his every step as he is so weak that he stumbles at night)
• last time sister came she started rambling about her health, the health of her husband, the health of her brother and after all that asking: by the way how is fathers health? As if any disease is worse than cancer, let alone they have any clue what a metastatic liver cancer is.

Mom must now be the bad one as she carried on looking at father and no extra coffee, tea nor lunch got served. Hmmm, that could explain why the visitors left so fast…

How to visit people in palliative care

• if the cancer’s patient’s mind is not in this world, don’t visit for chitchat
• don’t go during meals: the are givers already have their hands full with cooking and feeding the sick person, so bring your own food
• bring something useful to make up for the "time" lost when the care-givers have to focus attention on you-the visitor- and not on the person who really needs all the care he can get!
• if palliative care givers or patients could be asleep (which can be any time during the day if the nights were fully awake), don’t keep on ringing the bell or banging the doors
• just phone who you want to visit first and ask when you can come, and what to expect

Palliative Symptoms

Palliative metastatic liver cancer is ugly, and it’s not because of the metastatic liver cancer, its because of the "palliative symptoms". We hear similar palliative stories from people that have been in the same boat, yet with another disease than metastatic liver cancer.

One of moms’ sisters (a retired nurse and care giver in an elderly care home) dropped by today to have a look how we were coping in giving care to father’s metastatic liver cancer. She already stayed with mom a week, so she is a real help. The great thing is that :

She doesn’t drop by as a normal visitor sipping coffee or tea,
she is hands on, brings soup, canned homemade mashed apples…

Mashed apples by the way, because father forgets from time to time what his falls teeth are all about, so mashed food does miracles if your body already is consuming way to much energy to feed the cancer.

Advanced care

For advanced care, we have nurses coming in 2 times a day. Their care giving consists of:

• giving medication
• giving food and drinks
• giving father a bed wash or real shower

24 on 24 care

What really is needed these days is a 24 hours on 24 support of father. Support literary, as the cancer is making father weak. But also support in helping father out orienting himself where he is and what he is doing.

The only qualification needed here is patience: lots and lots of patience. Mom on her own would never manage this (people need to sleep as well, and with sleep deprivation comes a lack of patience), so mom has the luck that her kids are around and her sister drops by once in a while, or when needed.

Yet again, we are talking a 24 hour day job. Its hard, so I can imagine what happens if a cancer patient is treated in a hospital with never enough nurses to go around:

• neuroleptics,
• diapers and
• sleeping pills…

For those of you not knowing exactly what neuroleptics are: antipsychotic drugs which get rid of, or reduce, the intensity of psychotic experiences such as delusions and hallucinations. They also have a calming effect. Which is another way of saying: neuroleptics (Risperdal, Dipiperon, Haldol) can keep you asleep or groggy.