My husband, 65 y/o, was diagnosed with colon cancer 7 years ago, has undergone several colon resections which left him with constant diarrhea. His journey has continued with metastasis to his liver 4 years ago, which he then had half of his liver removed, chemo pre and post surgery. A year and a half later it reoccurred in the anastomoses of his colon and a new spot on his liver. Surgery again to the colon and ablation to the liver, pre and post chemo and radiation. One year later metastasis to his left lung which they did wedge resection to remove. Now 1 year later, he has peritoneal carcinomatosis, has received 5 rounds of chemo and suffered two bowel obstructions within 3 weeks. They resolved on their own and his doctors have said he is not a surgical candidate, there is nothing more they can do for him except comfort measures. He has decided to discontinue all treatment and make the best of his life he has left. Diarrhea is the main issue with 6-10 movements per day. Anti-diarrhea medications were never much help and since the bowel obstructions he is afraid to attempt to use them at all. His appetite is still good, he is a meat and potato eater. Occasionally has lower abdominal pain/burning. We wonder if anyone can tell us what will happen from here?
Thank you for any information, Dogmomma
Hi
Firstly I am really sorry to hear about your husband . He has been through so much .
I am not sure I can answer your question but I take it your concern is surrounding the management of his care in the future . I think it depends where you live as some have palliative care teams who can link in with him to assess his medical needs , pain management etc . Some have hospice outreach teams who keep an eye on general health and well being and this can be over a long period of time but good to make links .
Macmillan supportline 0808 808 0000 is open 9am-5pm .
Cancer research Uk have nurses who can be contacted on 0808 800 4040
They can talk you both through next steps on his journey .
There is a group here for relatives looking after patients with incurable cancer to gain support and understanding. There is one for patients too so just make sure it’s the one for relatives. They keep them separate to allow the freedom to speak openly about their concerns from different perspectives.
The helpline staff can help you work out where to access support locally to where you live and it’s completely confidential. They can even phone you back at a suitable time .
The pain management aspect can be dealt with through many different avenues . Firstly through his GP but also again depending on where you life they may have palliative consultants who specialise in pain control / break through pain etc .
I think it’s worth finding out where to access the best help before he actually needs it . A lot of fear prevents this part from happening and then when it’s required it can delay the needs being met . However given the nature of bowel cancer spread it can be slow and help may not be needed for quite a while but at least you would be prepared .
We are also here for you , to support you through this difficult time and I hope we can be of some assistance to you .
Take care ,
Court
Helpline Number 0808 808 0000
Thanks Court, I will refer to the other support groups. I am a hospice nurse here in the USA and we plan on acquiring my company’s services. I guess my question lies more in what will develop physically for him and begin his decline. And maybe no one can tell me that as each case is different as I have seen in my line of work. We have a great PCP, family and religious support and my husband is quite a fighter. Will keep in touch and maybe our journey will help someone else.
Best reguards,
Dogmomma
Hi
Totally understand . I was not sure what type of information you were searching for .
I have been around here for about ten years now as my mum has been a stage 4 patient for that time and a previous back ground in occupational therapy . Patients have been open and shared with us some of their experiences. A lot compensate well when treatment ceases initially and continue to carry out most activities of daily living well with fatigue and pain meds to factor in . Depending on the the location of the tumour load ascities becomes uncomfortable and there used to be a thread over in the secondary liver section where someone had documented their relatives story from the liver aspect . It was very honest and not everyone found it helpful. Given your area of work you may be better positioned to read it . You would have to use the search function as it will be further back . Obviously a tipping point occurs but you would be more familiar with that aspect . But certainly from what I can ascertain good functional capacity to allow some quality of life has been achievable for a lot of people and staying relatively independent up to that point .
It would be good to stay in touch ,
Take care ,
Court
Helpline Number 0808 808 0000
It has been 4 months since my initial post about my husband. He continues to amaze us all with his strength and determination. He sets goals for future events and so far he sees them through, golfing once a week is among his favorite activities. He looks like a very healthy man but this is deceiving. His bowel habits are more unpredictable than ever with obstruction always a concern. He is taking morphine 2-3 times a day for abdominal pain and has waves of nausea that come intermittently. Hospice monitors his status with a weekly nurse visit. Each day is a gift that we all should be more aware of and cherish.
So good to hear from you . Your husband is strong and courageous in the face of difficulties which I have to say I find totally humbling.
Wishing you both much strength and love going forward.
Court
Helpline Number 0808 808 0000
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