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Nearly at the end so far - UPDATE

Tueffel
Posts: 94
Joined: Feb 2020

Hello guys,

I hope you are doing good. My dads cancer journey is heading to an end soon and it was not always easy but the things ahead of us might be easier than the surgeries.

So my dad is doing fine. His left colon was removed and they got everything out. CT shows no signs of cancer anymore and my dad is getting slowly better. After the surgery his surgeon called to inform us that everything went good. I asked him a lot of specific questions after he was asking why I know so much stuff. He seemed to be really relived to explain medical things just like he learned after I told him I am a med student. It was funny :)

Unfortunately my dad needed to go back to the hospital after he was home for 48 hours. He had fever. My dad was so mad that he needed to go back to the hospital. They found a wound infection but they thought this wound infection was too small to cause the symptoms. So they checked everything because during weekend they apparently have nothing to do. My dad got a CT with and without contrast, x ray, USG and they found nothing. So our family doctor is sure that the wound caused the fever. Papa got antibiotics and got home again. 

Now my dad is home for 5 days. His appetite is increasing and he does not need to take any medications. My dad needed to take painkillers and had even 2 years ago pain from the colon. We learned that the tumor invaded the nerve sheath and that caused the symptoms but it is gone now.

Only bad thing is that he needs to pee a lot now without really emptying the bladder with sometimes some pain... I am worried that it is the next cancer but then he got checked just a week ago with everything so possible the prostate. 

Still ahead of us is the removal of the stoma and putting it back. But this is only a minor surgery. The tumor board will discuss with us soon how to go further ahead. They might want to do some chemos because Papa responded good to it and they want to decrease the risk of the cancer coming back. This time they might add a monoclonal antibody. I do believe my dad might do it just to be done with it and feel more safe. I prepared already a list with all the questions I want to ask. We will also get to know if thd cancer is genetic. 

But for now we are just enjoying this time! We are all home and Papa is getting better. Hopefully all issues will be solved soon and he will earn muscle mass and the wound will heal good. 

My birthday is next week and from February to now a lot was done. I am thinking back how scared I was in February after the diagnosis and learning that he has cancer and metastases. It seems so far away now...

I know many people are fighting and have bad news but I just wanted to post good ones and motivate others.

Tueffel

 

--- UPDATE-- 27th July 2020

Today was the day to meet the oncologist. I need to admit that we might have been too positive. My dad though that 1 or 2 chemos and he is good to go. But there are a few bumps ahead. The team talked and decided Papa is a risk patient. The colonoscopy 2017 was negative and then colon cancer with liver mets after 2 1/2 years with treatment of an immunosuppressive agent against the MS. Then the nerve was infiltrated and they found sateillite cells. With the surgery which could also put some cancer cells in the bloodstream, they talked and decided for chemo. 8 chemos! My dad was "I wont survive that. These are 4 months." So they compromised. They will reduce the concentration or dosis of oxaliplatin to 60%. Oxaliplatin causes 90% of all side effects. If we manage 6 chemos. It is good. Unfortunately there are no studies about 60% oxaliplatin. But even after they want to check more properly than other patients. 

You can say that these are the bad news. But we need to see the good ones too. Papa had before the surgery 4 chemos and many patients they have dont have the response Papa had. 4 chemos were enough to shrink the tumor to approximately half its size. Many patients need more than 4. So I believe that the chemo will help my dad. 

The doctor was really nice and answered a lot of my questions. We also talked about 5 year survival rates which might have been bad with my dad next to us. Most of these are old and the rates depend also in Germany if you do it in a center or not. Some of these might be "too positive" according to the doctor but his numbers were better than the ones I learned and my dad is besides the MS a fit guy with no medication against hypertension, diabetes etc. We will do it somehow. It is kind of like med school. 1st year is stressfull... then it gets slightly better and the last 3 years are least stressful. Until you are declared a doctor/ cancer free. We will do it! It is a slight bump in the road but not the end of the world.

Trubrit's picture
Trubrit
Posts: 5177
Joined: Jan 2013

I bet that is the best Birthday present you will get this year - even if it is a week early. 

It is a long road, even after recovery. There doesn't seem to be much peace of mind, even after hearing those wonderful words No Evidence of Disease. Every little pain, cough, oddness, has to be Cancer.  As time passes, it does get better, but never quite goes away - at least that is the case with me.

I hope his wound heals up soon, that can be a worry.  I know that he is in good hands with you. 

Keep us informed, and pop back on your Birthday next week. We will help you celebrate. 

Tru

Tueffel
Posts: 94
Joined: Feb 2020

I think I might have been too positive. He is not declared NED yet but CT can not show anything anymore. But I hope it stays that way and the chemo gets easier. 

But you are right: it is a long road. Until everything is back to normal and the treatments are done it will possibly be a year after diagnosis. It is Papas hardest fight, the mist challenging against cancer that can kill you. But the reward is life and he definetely needs somethibg good now happening. 

Everyday a nurse comes to take care of his wounds. They get smaller and smaller and look good. 

I will stay positive even we hoped for better but each treatment kills the cancer. One day we will hear the words with the whole treatment being over and hopefully we will never hear again something negative after. 

Tueffel

Annabelle41415's picture
Annabelle41415
Posts: 6517
Joined: Feb 2009

That is wonderful news and glad that your dad is feeling better.  Happy Birthday and hope you get to enjoy this upcoming one with much celebration.

Kim

Tueffel
Posts: 94
Joined: Feb 2020

thank you but I think now that it was a little too early. We still have a lot to go. Cancer is a marathon and it might take us till christmas until all treatment are over. Still we accomplished something already. We have to be careful and the chemos will be hard but if it never comes back. We will take it!

Tueffel

worriedson714
Posts: 64
Joined: Dec 2019

So happy for you and your dad right now my dad is going threw hell again after his first surgery for rectal cancer didn't get it all . They made him wait three months to tell him he needed another which got his hopes all up it was over . Now it's back to surgery so he's so mad and depressed about that and he might need a pee bag to and has pernament ostomy bag already so idk how to support him right now things are rough but thank you for the good news it helps to hear not everything is bad . 

Tueffel
Posts: 94
Joined: Feb 2020

I updated my post and I might have been a little bit too positive but I know a lot more now. My dad is not done either. I hoped we had a lot behind us but 6-8 chemos are hard too. He only had four with minimal side effects and still hates it. 

I think it is difficult for us. We have these struggles, the fear too lose to soon a parent. Still we want to cheer them up somehow. But sometimes it is nice to talk with other people. I believe my dad can make it and that gives me a lot of power for them. 

Tueffel

worriedson714
Posts: 64
Joined: Dec 2019

Sorry to hear your dad isn't done yet I will be praying for him . And it's very diffcult I am literally afriad all the time something is going to happen to my dad . If he sneezes I think something is wrong and I spend every day trying to cheer my dad up it usually doesn't work . My dad hated chemo also but it's been a while since he dealt with that now it's just the more surgery hanging over our head . And trying to find the best doctors after the original doctors kind of gave up on him . It's very nice to talk to someone going threw the same thing and I to believe both are dad's will make it threw this . 

Tueffel
Posts: 94
Joined: Feb 2020

yeah it indeed sucks. Normally Papa pushes it far away so the whole thing doesnt push him down. But hearing on Monday that this disease might kill him if he stopf fighting is another thing to process. He would rather have a 90% healing after 5 years than 20... I was shortly afraid that my questions did that but unfortunately it was everything else. 

You know my dad had some problems with urination. Every men or most have problems because when they age the prostate does problems. But you know with cancer you go to the next cancer. What if this is not benign but cancerous? So everything makes you nervous. I believe I wont sleep before his next CT. 

I hope you find the good doctors for him. We luckily dont have this problem. I believe finding a doctor in the US might always be a little more difficult than in Germany. 

I will pray for your dad too. Somehow we will go through this. 

Tueffel

Trubrit's picture
Trubrit
Posts: 5177
Joined: Jan 2013

You shuold get MORE sleep before his next CT.  

Try and tell youself that you need to be the fit, healthy one, so that you can take care of Dad. He needs you both physically and emotionally, and if you are deprived of sleep, then everything starts to go down hill. 

Try a little meditation before bed.  Calm your mind and tell yourself that losing sleep will not change the outcome of his CT scan. Deep breath. Calm. Sleep. Awake bright and ready to face whatever challenge may or may not be ahead. 

I know it is easier said that done, but I am living proof that it CAN be done.  It is a learned thing for some of us. Comes easy to others. 

I wish YOU the best, as I wish your dad the best. 

Tru

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