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Dad has colorectal cancer; I need moral support

shamazz
Posts: 8
Joined: Dec 2017

Hello friends,

My dad has been diagnosed with adenocarcinoma (colorectal cancer) and he has developed jaundice (liver has metasized) therefore we cannot give chemo. He is in severe pain, coughing and producing mucous. I need some moral support. I have tons of questions, i am meeting doctors but time is short. It all started 3 weeks ago. He complained about abdominal pain. We took him to hospital. They did Ultasound and said it was cancer. We did MRI and the cancer had spread to spine, shoulders and arms. LFTs and bilirubin was fine, we decided to start chemo but after 3-4 days, bili went up to 11 and now it is at 17. Oncologist has refused to give chemo and hepatologist says it's diffused condition. He cannot add stent or do anything. So, we are at the dead end. It hurts me when I see  him in pain and feel helpless because i cannot do anything. What shall i expect? I don't know how long he will live. I have taken off from the office but want to get back to work asap. Life is cruel. I want to stay with dad until his last breath but I am so helpless that I have to work as well. We cannot leave him alone for a minute. I requested doctor not to tell dad what's going on but doctor said it was important to inform him about the condition. Dad is strong, he said it was ok and he would like to donate his body to medical students for research and practice. That brought tears to my eyes. I know there is little hope but based on your experience, do you think if still there is any hope. If I can somehow prolong his life! Most importantly how do I deal with the doctors, some of them are very rude and speak like GOD.

 p.s. What i dont understand is how come there were no symptoms at all! He did not lose weight, there was no blood in stools, he was eating very well, there was no pain anywhere and within 2 weeks after first pain it spread so fast. I am not sure if it was already there but we found out now or if it started all of a sudden and spread to other areas of the body in 2 weeks. Is that possible? Doctors don't discuss in detail and don't have concrete answers for anything. Can someone share their experience of such situation with their loved ones? Thanks in advance!

Trubrit's picture
Trubrit
Posts: 5493
Joined: Jan 2013

And please let me say how sorry I am to read you post. Your emotions are raw, and rightly so. 

You dad is in a bad place, there is no denying. As for hope, there is always hope. Sometimes that is all we get to cling to. 

Dying of Cancer can be traumatic, for the patient and for their loved ones, and sometimes, folks just slip away, quickly; and that is a real blessing, especially to the patient. 

Sometimes the patient moves forward with treatment, when they know it is a lost cause, mostly because they do not want to hurt their loved ones; and I always caution caregivers about putting that kind of pressure on those they love. Treatment is harsh. There is a time when you have to weigh up the pros and cons. Do you want to let nature takes its course, or suffer through your last days?  It is a VERY VERY hard decision, and the only person who can make that is the patient.

As for rude Doctors. If someone is rude to me, I call them out on it. I will not be talked to like I am some kind of imbecile. If a Doctor acts like God - and there are plenty of them out there - then I will politely but firmly tell them exactly what I think. Will it change their approach? Who knows!  But you usually gain their respect, or their dislike. 

I am sorry to have been so blunt. I suggest you enjoy (yes, enjoy) this time with your father. It is so good of you to take time off work. Enjoy the happy moments and support him through whatever decision he makes.  

And, always, always hold on to hope.  Not false hope, but a simple hope that your dad may be the one who survives; while preparing for the worst. 

There are many members here on the forum, and we all have different approaches. Mine is just one of them. 

May you find comfort in this journey, but don't deny yourself the sorrow that goes along with it. 

Tru

shamazz
Posts: 8
Joined: Dec 2017

Hi Tru

Thank you very much for the quick response. I feel so much better after reading your message. I posted the message and instantly started waiting for responses. It felt so good to get a response from someone. You are spot on! I totally agree with you. The first two weeks were really harsh and specially because I was away, not with my dad. My mind was always clouded with thoughts, with old memories, smiling face of my dad, memories of my childhood so on and so forth. Now I am with my dad, I feel better. My only worry is that I have to get back to work and leave him behind with other famly members and may not see him again. I am the eldest son. Coming to see him was difficult, leaving him in this critical condition to go back to work will be harder. That's why I said life was cruel. Yes, i am clingingg to hope I have. I will continue to meet doctors and try to find ways to at least make my dad's final journey less painful. Now I am worried about myself also. I have lost lot of weight recently. I am diabetic. Doctors did colonscopy and MRI last year but did not find anything except a few benign polyps. Now I am so much worried that I want to go back to the doctors and ask them for a concrete answer. If all is well then why have I lost so much weight. I was at 180lbs, now I am at 125lbs. I have ankylosing spondylitis (auto immune disease) and diabetes. Anyway, I thank you again for taking the time to read my post and respond. May God bless you and give you good health!

Regards,

Shamazz

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

i'm sorry that you had to come to this board with such a difficult situation.

On your question about speed of spread: most of the colorectal cancer cases that I've read about are fairly slow-moving so that the treatment process feels like it's relatively slow. That said, there are a few known mutations or conditions where it can move aggressively like BRAF V600E. Cancer tumors can grow pretty quickly (I had one in me and I felt that I could feel it growing and was really worried that it would create a blockage soon if the treatments didn't start working).

The folks here either have cancer, had cancer or have/had loved ones with cancer. From my perspective with cancer, I'd want to know what I have and the prognosis so that I could get my affairs in order to help minimize problems for my family when I'm gone. And then spend the remaining time as productively (and that can include having fun) as possible.

There are clinical trials out there for various cancer mutations but it would help to know what the gene and mutation are that are the root of the cancer. Unfortunately, this can take some time to get a biopsy and then get the biopsy processed by pathology and then into the appropriate clinical trial which might also be some distance from your home. Cancer is horrible, horrible stuff.

 

shamazz
Posts: 8
Joined: Dec 2017

Thank you Mike! The problem in our case is that it spread so quickly that we did not get time to do anything. The process might have started long time ago but since there were no symptoms we did not know what was going on inside him. Anyway, reading these messages gives me hope. Even if I cannot stop the disease progress, I will try to eliminate his pain as much as possible. Another discussion going on in our home right now is whether to continue giving him palliative support or not because with support he may live for a few more days but with pain. For example, my brother who is also a doctor noticed the thinning of blood. He thinks it's happening because liver is dying. He says this can result in vein rupture in his brain and causing paralysis. He says if we give him plasma infusion, we can control this problem but again shall we try to keep him alive or let the nature take its course and let him die peacefully. Difficult situation for us really! but I told him that i want to continue giving support for as long as needed. Thanks again!

airborne72's picture
airborne72
Posts: 282
Joined: Sep 2012

Shamazz:

Let me begin by saying that I can not know your pain, only mine in a similar situation when my mother passed away from pancreatic cancer.  It hurt me deeply and I read that same depth of pain in your post as well.  Perhaps if I share my story then you might feel some solace regarding your father.

My mother was diagnosed in early June 2015 with inoperable pancreatic cancer.  She just woke up one day with jaundice and upon investigation it turned out that the tumor on the head of her pancreas was so large and invasive that it was blocking her bile duct, thus the jaundice.  She passed away on her birthday only 9 weeks later.  I was devasted and still greive. 

However, the passage of time has enabled me to accept it.  Not like it, just accept it. That passage of time has also given me a perspective about my mother, myself, others and life that I did not have prior.  I learned from her suffering and death and I am determined to "be a better person" as a result.

I come from a family of five children.  From the day of my mother's diagnosis until she passed, one of us was in her presence.  That became challenging since we were scattered across the country and all of us worked full time.  I assumed responsibility for making the schedule.  It was an extremely stressful time trying to juggle work, travel, finances, etc.  But the greatest stress was the slow, methodical loss of our mother.  Nothing we could do would abate the inevitable curse of cancer.  I lost weight just as you descibed.

Even in such a sad and hopeless situation (hospice care was wonderful but terminal illness was devastating) I learned from my mother's illness and passing.  During those short and heartbreaking weeks I learned more from my mother than I had in my previous 64 years, and what I learned was by her example.  What she did, and did not do, impressed me and has changed my demeanor.

I never heard my mother complain.  Never.  She remained positive and determined every moment of every day.  She was stedfast in her courage about the future and satisfied with her past.  She once said that obviously she had done something right to have five children who were so selfless and determined to help at all costs.  Always, without fail, she would thank us for all of the tasks we performed (feeding, bathing, dressing, bathroom, etc.) and then bless us with a kiss.

My mother was a member of the Greatest Generation.  The one that was born and raised in the Depression and then left high school to fight in WWII.  She was 20 years old, five months pregnant with my older sister and raising my one-year-old brother when my father went ashore in Normandy in June 1944.  That generation was tough, but also very appreciative, and my mother appreciated all that we did for her during her illness.

I lost my mother to cancer but I gained from her passing.  Your family may very well be in a similar situation.  My heart aches for you, your father and your family. 

I am on this forum because I have rectal cancer and I am currently going through chemo therapy.  So far, I have not been able to emulate my mother's example by being positive and determined and appreciative but I am trying.

Jim

shamazz
Posts: 8
Joined: Dec 2017

Hi Jim,

 

Thanks for sharing your story and I am extremely sad to hear that you have rectal cancer but I would say please stay strong and don't lose hope. Enjoy each and every moment of life. I pray for your quick recovery and good health.

My dad passed away on Friday but I am ok now. I have finally accepted the fate. One good thing that calmed my nerves was that my dad stayed strong till the end. It was I who frequently broke down but he scolded me every time he saw me crying. I miss him and the life goes on ...

Regards and Best wishes,

Shamazz

Ruthmomto4's picture
Ruthmomto4
Posts: 706
Joined: May 2013

I don't know what to say, it has to be excruciating for all of you to watch you father slip away. Hospice will help him with pain and they will help all of you as well. My Dad passed away what will be exactly a year ago this coming Saturday.  I try not to look at the what ifs anymore he was very sick for a very long time. I am grateful he did not suffer at all in the end. I am hoping the same for your Dad. As for your health, if the doctors you see wont help find one who will! My thoughts are with you and your family.

shamazz
Posts: 8
Joined: Dec 2017

Thanks for responding to my post. My dad passed away on Friday. It was a small journey for him. He was diagnosed with cancer 4 weeks ago. Cancer was very aggressive, it finished him in 4 weeks. He was unbelievably stronger than all of us (his family members). Yes, he experienced excruciating pains and that was very difficult for me to see but he did not complain at all (like why god gave him this, why he is having to go through this, etc). I wish good health to everyone on this forum and thank everyone for chipping in and supporting others in need of moral support.

 

Warm Regards,

 

Shamazz

ReeRee2's picture
ReeRee2
Posts: 39
Joined: Oct 2017

My Dad passed away of cancer but not colon but bladder cancer. I drohim to treatments because hw wanted to live. He did radiation and chemo. he got so week that it was hard to get him to treatment.

i left to go see my daughter one weekend and my dad went into the hospital to never come out. His mouth sores took his life.

one day sitting in the oncologist office my dad pulled his wheelchair in front of me and said’ I would like Roy to speak at the funeral.i was taken back but said, yes we can do that. One of the things I did when I felt time was not on our side is I recorded him with me asking him questions. I even pulled out a box of pictures that I had him talk about. I am so thankful that I did that. 

My dad knew his time was near. I love going back and listening to him talk.

He fought hard for his family.

Now at 59 I have colon cancer and can relate to things he was having trouble with.

Love on your dad and ask questions you would like answered.

shamazz
Posts: 8
Joined: Dec 2017

So sorry to hear about your dad! I sincerely pray to God to give you good health and lessen your pain. I hope you will recover quickly. Just one piece of advice, enjoy every moment of your life. Don't lose hope, stay strong and be thankful for everything. My dad who passed away on Friday, did not complain even once till the end and that has made me stronger. It was a lesson for me and I am proudly sharing it with the forum members. God bless everyone!

Regards

blessed39's picture
blessed39
Posts: 91
Joined: Dec 2016

Dear Shamazz, Please read my story on my blog entitled "How I Beat Stage Four Colon Cancer"  and make any comments.

I pray you and your dad can find some peace from my experience. God bless you both.   blessed39

shamazz
Posts: 8
Joined: Dec 2017

Could you kindly share the link to your blog post? My dad passed away on Friday but I would like to read your blog. I would like to spread positive message so that others can benefit from it.

 

Regards

Shamazz

Lily Flower's picture
Lily Flower
Posts: 254
Joined: Jul 2017

So sorry to hear about your dad. That is so courageous of him wanting to donate his body for medical research. Sounds like your dad has accepted it. You can request FMLA from your job to care for him.  I know what you're going through, I have gone through that with both of my parents through hospice. It's a wonderful program with compassionate and empathetic medical team and its staff. It has been 14 years for my dad and almost 5 years (January) for my mom. They still send me holiday invitations and grieve get together events. All the best to you and your family! 

shamazz
Posts: 8
Joined: Dec 2017

Thanks for your support Lily! My dad has passed away but I feel much stronger now. It was a life changing event for me. It's not that I did not understand life before but now I have a new meaning to life and will try to enjoy each and every moment left in my life. Thank you!!!

 

Regards

Shamazz

Ruthmomto4's picture
Ruthmomto4
Posts: 706
Joined: May 2013

for the loss of your Dad. My thoughts are with you and your family.

Lily Flower's picture
Lily Flower
Posts: 254
Joined: Jul 2017

My sincere condolences to your family, Shamazz! 

phivu
Posts: 1
Joined: Dec 2017

I am sorry for your loss.

Trubrit's picture
Trubrit
Posts: 5493
Joined: Jan 2013

I am glad that you are at peace with his passing, even though the sting of death will stay with you for a long time. Thank goodness for happy memories. 

As we  bid you farewell from this forum. we also thank you for being a good daughter/son, with a desire to reach out in your dad's time of need. 

Blessings as you move forward in life. 

Tru

Mickeyclaude's picture
Mickeyclaude
Posts: 21
Joined: Dec 2017

i am crying having just read this thread. Your father did a wonderful job raising you to be so compassionate . That is the best legacy we carry forward for our parents.

 

danker
Posts: 1282
Joined: Apr 2012

I believe your father is now in a better place!  Pain free and with the God who loves us all!

kojack007
Posts: 6
Joined: Dec 2017

and prayers to you and your family.  

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