My dad’s been diagnosed with terminal bowel cancer

[Itsangie]

Hey everyone. I’ve read through every cancer forum there is about a million times before I finally decided to post my own experience. I’m not sure if anyone’s gonna respond, but I really hope someone does. 

My father (Age 54) was diagnosed with Stage IV Colon Cancer that had metastasized to his abdominal lymph nodes and liver about two weeks ago. Prior to that, he had been having vague symptoms ranging from fever to abdominal pain as well as a chronic cough. Seeing as we are going through a pandemic, my father was especially paranoid about catching COVID as he has heart problems. He has always been a bit of a hypochondriac, too, so my family and I brushed off his symptoms and blamed it on anxiety. At that point, my relationship with my father became extremely strained for multiple reasons. Needless to say, I wasn’t there for him when he was experiencing said symptoms and I feel extremely guilty for it. 

A month passed before he started experiencing sudden weight loss and fatigue. His abdominal pain got worse and he lost his appetite. He finally decided to go to the doctor and have some tests done. His ultrasound didn’t reveal much, but his blood work was concerning as his tumor markers were extremely elevated and he was experiencing signs of obstructive jaundice. He had a CT scan done and it was about 2 or 3 days until we got the results and he was diagnosed with Stage IV Colon Cancer. 

Since then, he’s had 2 stents placed in his bile duct in an attempt to cure his jaundice so he can start receiving Chemotherapy. The two days after his stents were placed were good. He regained his appetite and was a lot more energetic, but he had a severe stomachache one night and he’s been feeling extremely exhausted ever since. Lately, he’s been sleeping all day, only waking up to eat and take his medicines before going back to bed. He complains about feeling uncomfortable even though he’s experienced no pain since his stomachache. He says that that something just feels off.  I’m trying to stay strong hopeful for him. I really want his jaundice to improve and to believe that he’ll be able to receive palliative chemotherapy so he can stick around for longer, but I keep coming across these “end of life” signs online and I’m scared because I think my dad is starting to show some of these signs. His constant sleeping and bedridden state concerns me, and the fact that he’s eating very little also has me worried. I’ve read through countless journals about my dad’s illness, so I know the prognosis and that’s what has me even more worried. I don’t know what to do anymore. Should I come to terms with the possibility that my father is dying soon, or should I remain hopeful so he can keep fighting? Is it too soon to feel this hopeless? I know I’m not ready for him to leave me. His illness has brought me so much closer to him over those past couple of weeks. I’m also his main caregiver and it pains me to see him so weak. 

Am I losing him?

Feel free to share if you’ve been in a similar situation or had a similar experience. 

[suz123]

Hey Itsangie! I am so sorry to hear about your Dad and though a lot of things you said ring true for me (stage 4 bowel cancer) I can't advise if your Dad is dying or not but my daughters, 3 of them have become very close to me as I go through this. I had surgery in October 2019 but could not have chemo to begin with as I was so weak. 8 months later I can,and am receiving chemo. I am so lucky as I feel stronger now than I have in years which I know sounds weird. Why I am replying is because of how much my daughters have helped me deal with all this. I don't honestly think I would be here without them. They are there every step of the way and encourage me to do exactly what I feel I need to do. If dad isn't eating all you can do is maybe try to tempt him with things he loves or just be there to hold his hand through times he can't eat. There will be times he won't want to talk or even have company and that is fine but do poke your head around his door and just ask if he needs anything. It can be a thankless job at times, being the main care giver but your dad will be so glad he has you even if he doesn't show it. Dealing with end of life stuff for the carers can be very emotional and please try to get in contact with other caregivers for advice. This is your father's journey, but not his alone, you have the journey to take too. Don't try to carry the burden inside but talk to others as they will have ways they have coped to share with you. I have three daughters as I said and each one deals with this in their own way. I am completely at ease in my mind with my journey and what is to come and have made all the plans I need for it. If you can talk to dad about how he would like to travel this road and how he is prepared for the end with regards to his care. Make sure you have it all written down for him to sign with regards to life support and stuff like that. It is a hard subject and probably one of his medical team will broach the subject with him. If they don't, ask them to begin the subject for you. I have invited my daughters to all of my medical appointments so that I have at least one extra pair of ears to listen and they can also ask questions too. It  helps me no end. They call me most days as I am in aged care home.  As a care giver your health is just as important so please take good care of yourself. My name is Suz and if you ever want to talk again I would be happy to do so.  Be brave and just be there for Dad when he needs you. Try really hard to not get lost in this as you need your life to give you some balance. You need to recharge your own batteries and do little things to pamper yourself. This sounds trite but it makes you stronger and better able to cope. I wish you all the luck and love in the world and hope this helps in some small way.

Kind regars from Suz.

[cemo-queen]

  Don't feel guilty. You are there now! Sometimes we are to busy to listen and blow off the complaints of others or ourselves. I waited  and  I was diagnosed with stage 4 colon cancer. I had to have my entire colon removed but it had metastasized to my lungs. They gave me months, that was 6 years ago. you always have to have hope and keep fighting! Now that you know about your father also know that every moment you are there means everything. Of course he feels off he has cancer that's normal. There is a book Eating well through cancer maybe it can help you both. We are never ready to lose someone we love. Don't think about then. Be with him now. Remember keep fighting and remain hopeful. Hang in there. Ok.                                                                                                                                                                                                  cemo-queen

[Budgie]

Hi @Itsangie,

I'm sorry to hear your father's got cancer.
Don't blame yourself or feel guilty, its not your fault he's sick. He probably shouldn't have waited so long to be checked out, but that was his choice.
It is very important though that he listens to his body now. If he feels that something isn't right, he should have it checked out. Problems can arise after surgery. When he had the severe stomach ache, did he report it to his surgeon? Perhaps something has happened that shouldn't have. He should get a CT scan done to put his mind at rest. This can be organised by his GP or surgeon.
Don't give up hope just yet. It's still early days. If he's not eating or drinking much, maybe he needs to have some dietary supplements like Sustagen, etc. Try to keep his water intake up too.

Don't forget to take time out for yourself at least every week. You will need it.
Look after you as well as him.

Budgie