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Emotionally draining weeks

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

Hello,

So, normally it would be the last week at home. Lucky me I will have 6 weeks of internship here cause tbh last year it was difficult to go. No I think impossible. Last year at this time, we ralked about cure, the cancer is gone. Now we have only Lonsurf left.

I think I need to fo some recap. 17th August we got to hear that the cancer is growing. 2 days later my dad had an emergency surgery due to an ileus caused by peritoneal metastasis. That was like a sucker punch. The surgeons did the surgery but they didnt know if Papa would survive. The surgery went well but the peritoneal spread was confirmed. These mets are the worse of the worse and my Papa is not a csndidate for surgery. I prayed to god that my Papa wont die. I prayed a lot these last months since the diagnosis. It was the only time god actually listened. My Papa survived to the surprise of the doctors. 

Papa was one week home and then we got an infection with diarrhea. All of us. Unfortunately, Papa hit it hard. At the end he was afraid to eat due to pain, chance of ileus, diarrhea, gases. The whole GI tract is irritated. 

But our GP saw it. For nearly a week now my dad has parenteral nutrition through the port at home. When he sleeps, he gets 1600kcal into the vein. Before he was too weak to eat. The effect was basically the next day. He was so much fitter. Finally, it got better. The appetite is not much now but we know that Papa gets the energy. Unfortunately, today and yesterday was not a good day. I believe the fiarrhea is disturbing him again. 

Last week we had a CT. One liver tumor did grow 18mm from 14th July. It is a lot but tbh we expected worse. It was 18mm in 2 months. Before we had 1mm a day before the chemo. This tumor needed 3 weeks to grow fromm 22 to 51 once. 2 peritoneal lesion are visible on the CT and new lesions appeared in the liver. Lungs has one suspicious lesion at 7mm. 

Tomorrow my Papa will start Lonsurf eventually inside a clinical trial with Cyramza (something similar to avastin). I dont know if he will get it or not but he will have Lonsurf for sure. Normally, it is less effective compared to Folfox and Folfiri but then, they were not effective in my dad, maybe the 3rd line therapy is the charme. I hope it works. They do have people inside this trial already for some time. My mom an unreliable source met one with 3 years on this therapy. I hope my Papa will be the same. It seems to work better on KRAS mutated cells. 

For now let us hope. But if Lonsurf stops working, I will get my hands on methadon and continue Lonsurf. Methadon can eliminate resistance and increase effectiveness. I read several reports from people about it. They will start a study with it hopefully soon. 

We changed the oncologist. Communication with the old ones were awful. But even though the new ones cant do wonders, my Papa feels good there. Communication works. The doctor was first afraid of the parenteral nutrition saying it might decrease the appetite and Papa wont eat anymore. But we told him how it is and he simply said "I take everything back." He is all about quality of life. I hope my dad will have many many more days to live but good days because bad days are just exhausting.

I am worried about my mom. She is afraid, negative, worried. I wont be there at some point, she will be alone again with her mind spinning vicious circles. We need to hope and our GP said that it is ok to hope for a miracle. 

Btw, I declared my grandma, my Papas mother, dead. She is still alive but when my mom told her about the peritoneal spread, she said "it would be the best if he doesnt wake up from the anesthesia". The own mother said that zo her son. Since Papas home, my mom and me were 24/7 available, taking care of him, being there, supporting him etc. We did not get one thank you from her or did she even asked how we are. I had a close relationship to her and I know it is hard for her as well but she is constantly complaining, constantly negative. Positivity is important. Even if it can hurt...

Take care!

Silvia

Trubrit's picture
Trubrit
Posts: 5509
Joined: Jan 2013

I am sorry your papa's jouney has been so rough. Rough for him, rough for all. 

I am also sorry to hear you say that you 'declare your grandma dead'.  I understand your frustration at her seeming lack of empathy for her own son; but maybe there is more going on with her, that you might not know.   We all deal with the trauma of Cancer in different ways, some of those ways are or seem to be, inappropriate, but it can be a shield for their own hurt.  Have you discussed your feelings of hurt, with her?   -   that is a retorical question, thus not needing an answer. 

I hope treatment goes well for your father.  I wish you all strenght. 

Tru

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

Good for you, never just put up with people.  I have declared my father's side ALL as dead to me after some terrible events.  Now my inlaws.  Don't look back.

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

Lucky us we got into the trial with Lonsurf plus ramicirumab. Papa has some abdominal problems (pain, diarrhea) and was tired the last 2 days. The doctor thinks, it is the cancer. I am not convinced, maybe I am naiive but I think it is an infection.

My mom met someone on this RAMTAS trial for 3 years already. I met someone who has peritoneal mets for 3 years, still counting. Maybe my Papa will finalky fall into the category with living long with it. 

Silvia

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