Dad with terminal colorectal cancer, please help me

Hi all, 

im sorry that we all have reason to be here.

My dad was diagnosed with stage 4 colorectal cancer with metastisis to the liver in Nov 2019. He has a stoma fitted and had some chemo and radio therapy but decided to stop treatment after some horrendous side effects in July 2020. We were told then that a prognosis of 3 months was optimistic, and here we are almost 17 months later! The last few months he has slowly deteriorated but the past 2-3 weeks have just been awful. He has suffered with swollen legs since the chemo but now they have gotten so bad that he has deep open wounds covering the bottom half of his legs and his feet, they are constantly oozing and have the most awful smell. The district nurses have been coming out twice a week for the last couple of weeks to bandage them up but hes in agony with them, and if anything they seem to be getting worse. the district nurse said she doesn know what it is, has anyone seen or heard of anything like this? Ive tried google but i keep coming up blank!

Hes super confused all the time now, hallucinating, struggling to stay awake (falls asleep mid conversation while stood up which is quite a skill!), he struggles to walk any where, stairs are horrendously hard for him, he eats minimal amounts, he refuses to take to his bed but he is suffering so much, this is so cruel. Hes in pain alot of the time but hes already on over 65 tablets a day plus pain killing patches. And now he has started having night mares to the point that yesterday i got there to find him with bandages falling off his legs, his lounge coffee table missing its legs, sugar poured all over the kitchen, curtains ripped down, furniture moved and messed up (my dad has always been the tidiest person ever!), plus a number of other small totally out of character things, he has no idea what happened but quite vividly remembers the night mare. Oh and somehow he had managed to rip off 3 toe nails just kind of leaving the bottom layer of the nail so no bleeding etc.

I'm desperate now, i guess i just need some words of comfort, i dont want my daddy to die but i cant bear seeing him like this. I am his only carer, he refuses point blank to go into the macmillan unit (he has a phobia of hospitals!), i'm self employed and have 6 children, I have cared for dad every single day since he was dianosed and, as selfish as it sounds, i am exhausted.

WIth Christmas approaching i dont know what to tell my children about Grandad being here for christmas (youngest child is only 6), Grandad has always been with us on christmas day, has anyone seen deterioration like this? So severe yet wont take to bed? He's the strongest man I've ever met, but maybe now that is just making his suffering worse. 

Im sorry for the rant, I really am trying to cope alone with this but i really dont know how much more i can cope with.

Thankyou for listening x

  • Helo CBaby80

    I'm so sorry to hear about all that your Dad's been through. It sounds like it's a particularly difficult time for you both at the moment. 

    With the fact you've mentioned that things have gotten worse in the last 2-3 weeks and he's now hallucinating, struggling with confusion and has behaviour changes please do get in touch with his GP. There could be many things causing these symptoms but it's important that he's assessed by a Dr. 

    You've clearly got a lot on your plate but it's important for your Dad's safety and for your own health that you reach out for some support for you both. As I've said, give the GP a call but if you want to talk with our nurses as well you're welcome to call them on 0808 800 4040 (Monday to Friday 9 am to 5 pm). 

    Keep in touch CBaby80 and let us know how you both get on. 

    best wishes, 
    Jenn
    Cancer Chat moderator 

  • Thankyou for your reply,

    he had blood tests done just over a week ago, and results showed nothing abnormal, GP is involved but has been unhelpful from the outset. The macmillan doctors and nurses have been fantastic but they also seem a little stumped at what is going on. As the nurse said the other day "hes a medical phenomenon!" I was just hoping someone here could relate to our situation.

    Thankyou again for taking time to reply x 

  • You can contact your adult social services for an urgent assessment of YOUR needs as a carer. You can also ask for him to be assessed for carers to go in, the district nurse may be able to get that done more quickly. I am wondering if the GP has done all necessary tests to find out what's going on and if your dad would agree to more. Could any of his meds be clashing with each other? Is he taking them as and when he should be? I have to be honest and state that I am not in your league for coping, few people are, and he is so lucky to have you. Part of the job as a carer is having to make horrible decisions for their loved one and you may have reached that point. Things to consider are how safe he is, how much unnecessary pain he is in and whether his judgement is affected at times. He may need to be assessed properly via A&E where they can get bloods run much quicker, etc., and it does sound as though at least one medical emergency has occured. He is still the big man who raised you, nothing can take that away, and big men sometimes have to be guided in the right direction when they encounter ill health.