So Sad

Fluffybunny · New User Joined: 19 Apr 2006 Posts: 2

Hi All,
My father-in-law has been diagnosed with advanced liver cancer which has spread to his lung. He is 75 and this has come as a huge shock to us all as we expected him to be around for another 20 years at least! (Family history of longevity). His liver is also cirrhotic. He had hepatitis (I don't know which one) but refused medication for it in the past because of side effects.
His doctor confirmed 2 tumours on his liver in January but they were really very tiny and apparently inoperable because of where they were situated on the liver. He was informed that there would be nothing the medical profession could do. He returned for a checkup last week and discovered that the tumours had more than trebled in size and that the cancer had spread to the lung. He only then informed us of his diagnosis. We are all shocked and saddened by this, and of course, his doctor will not commit to any prognosis or timeline. He is scheduled to travel overseas with my mom-in-law on 14 May - he will go and say goodbye to his family then, but the doctor cannot say whether he'll be well enough to travel then. We are confused as we do not want to push anyone and at the same time do not know if we should rush him to "wrap things up" in a few weeks or if we might have a year to do things without this panic and rush.
I think even he is surprised at how fast this has progressed and probably expected it to be a slow process because he is also desperate to sort everything out.
I just do not know what we can expect now or what we should look out for. He drives all the grandchildren around everyday between home, school shops etc. How will we know when to stop this as doing so now will hurt him deeply. He has a very healthy colour, although he has become very thin and his face is gaunt. He moves around with ease but struggles with breathing - he takes frequent deep breaths which he blows out between pursed lips. He has frequent bouts of diarrhea too. What warning signs should we look out for to ensure that we take appropriate care too? He will want to be independent and needed to the very end and he is always a joy to be around, but how will we recognise deterioration if he is likely to hide all symptoms for as long as possible? He loves my mom-in-law so much and cannot bear the thought of leaving her, the kids and grandkids behind.
What subtle signs can I look out for? Is there anything we can do to slow the progression at this stage? What is the likely outcome now?

paulsdaughter · Regular Joined: 26 Feb 2006 Posts: 14

Hi,
I am so sorry to hear of your father-in-law's illness. When my dad was diagnosed I remember asking many of the same questions. It is different for each person, but perhaps hearing myd dad's story will give you an idea of what to expect. My dad was dx'd. w/a small tumor in Dec. 04. A shadow on the ultrasound. He had alcoholic cirrhosis so he had to have yearly ultrasounds to watch for cancer. He had been sober for ten wonderful years at this point. They scheduled a follow up CT scan for Feb., why they waited that long I'll never know. By the time they went back and looked he had 3 and mets to his lung. They had noticed a spot on his lung before, but they thought it was scarring from MRSA that he had before. Turns out the liver cancer had spread to his lung. His doctor attempted a liver resection, but because of the cirrhosis he couldn't take as much liver as he wanted to. When he went back for his 3 month follow up the cancer was back worse than ever. At this point he was sent to an oncologist. After speaking with the onc. he decided that his best course of treatment was to go for quality of life and palliative care. It broke my heart, but inevitably it was his decision. This was in July of 2005. He slowly, over time began to slow down. He kept losing more and more weight until his face was very gaunt. He had a lot of trouble sleeping because of back pain. By this time the cancer had spread to his bones. He always said that the pain was pretty minimal. He worked right up until two days before he passed. He began sleeping a lot during the day, but was still able to drive, go to the restroom on his own, feed himself. My dad fortunately went very, very gently. The day before he died he started to get confused. This is called encephalopathy. It happens when the liver begins to fail and the ammonia & toxins build up in the person's system. For dad, he became very confused and kept wanting to take his clothes off. My mom called on Sunday and told me I had better come. By the time I got there dad was very unsteady on his feet and was slurring his words. I don't think he recognized me. I knew it was time to say goodbye. We helped him into bed and he very quickly lapsed into a hepatic coma. Five hours later he died in my arms. He was 59 years old. I would definitely recommend hospice. They can answer all the questions you have and help your FIL live his life as pain free as possible. They will also be able to tell you when he should stop driving etc. Many, many people did not know how ill my dad was, even right up until the day before he died. They thought he was just getting very thin. Like I said before, it is different for everyone. I hope that this was a little help. Having been there myself I know how incredibly sad this is. Good luck and feel free to email me if you have any more questions. I'm sorry this is a such a big, run-on epic, but once I get goin' it just pours out!LOL God bless.

Paul's Daughter,
Jen

Fluffybunny · New User Joined: 19 Apr 2006 Posts: 2

Thank you kindly for your response. We will definitely keep an eye on his symptoms and just be there for him now. My mom- and dad-in-law have now been to a dietician who has put him on a special diet. What concerns me is that they're trying to get his weight up with high-protein shakes and giving him supplements as well. Surely this puts added strain on his liver? I don't know if at this stage diet can make any difference. Although looking quite gaunt, his face still has a healthy colour. He gets exhausted later on in the day and it is noticeable in his eyes - they become very red and droopy.

My mom-in-law refuses to accept the prognosis / diagnosis and is doing everything she can to prove the doctors wrong and doesn't believe that nothing can be done for him. She has booked an appointment for him to see one of South Africa's top oncologists next week and hopefully we'll all get a more accurate prognosis, even if it is just an educated guess. I hope that this will finally allow the reality to sink in with my mom-in-law so that she can start dealing with this, whether she needs to grieve or get practical or have fun with him in his last weeks. I suppose in her current state of denial she feels like she's doing something useful by looking after his diet and speaking to doctors.

As he knew since January, he's had time to come to terms with having cancer (although I don't believe anybody ever really does), but my mom-in-law's reaction has made him afraid to die and afraid to leave her behind.

For now, the best all of us can do is to take it one day at a time. So far we have all focused on what lies ahead and what to expect in one week or three weeks etc. I hope he also gets to a place in his mind where he can wake up each day and feel "TODAY, I'm alive; TODAY I can do whatever I feel like; I'm happy because I'm here TODAY"........ without having to worry about what comes tomorrow.

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