My Dad has Bowel Cancer what can we expect?

[fayekay]

Hello, my Dad has Bowel Cancer. He does not like to talk about with us so I am a little unsure of its progression.

He was told October 2013 it was terminal and he had 12-18 months to live. Would this mean he has stage 4? He has never had any chemo or radiation. He did have an operation at the beginning to remove part of his bowel.

He seems to have intermittent pain, a few days of really bad pain where he has to take Morphine. The pain is in his stomach, back and now his testicle. He is always very tired and doesn't eat much but then he will randomly bounce back and feel good again.

A few days ago he had an MRI or CT (not sure) and they said it had maybe moved or grown, it is hard to get accurate info out of him, but he is waiting for his consultant to get back from holiday to decide whether or not to operate again.

I am just a little bit confused as to what to expect, is he near the end? Or if not how will it happen? Will he be okay one day and then all of a sudden be bed ridden? Will he be conscious?

Also if one day he takes a turn for the worst, who do we call? Do we call his consultant or his GP? Will somebody come to the house to check on him or will it be purely down to us. Not that that is a problem but I would want the bets possible care for him.

Any advise or info in greatly appreciated.

Thank you

[muchy]

Hi there

I am not a medical expert and the information you have provided is vague, as you said, because your dad does not tell you what is happening accurately. That may be because he is also not clear himself about what exactly is going on. Maybe it is not explained to him very clearly, or maybe he doesn't understand fully when it is explained, or maybe he just doesn't want to know the whole story. I went through something like this with my Mum when she developed Parkinson's.

So you will understand that it isn't possible to say anything precise about what is happening or what is going to happen to your Dad. That will depend on so many things, such as whether the cancer has metastasised, where to, etc... For example, it may still be only in his bowel or it could have spread to his liver, lung, etc...

The only way to get clarity about this would be for you to accompany your Dad to an appointment with his consultant and to ask him or her directly. That will depend on your Dad giving permission for you to be present. It sounds as if he is a very private person so he might not be willing. That will depend on you talking him round.

You don't need to worry about being on your own with it. If anything changes and it is clear that he needs medical help, then just dial 999 and get to him to the A&E department in your local hospital. Does he live with you? If not, how will you know if he needs assistance? Will he call you?

I hope you are able to speak openly and clearly with your Dad about how he feels, and speak openly and clearly with the medical staff who are familiar with his case in order to know what to do. All my best wishes.

[fayekay in reply to muchy]

Hi thank you for your reply.

Yes I live at home with my dad and family so we will know when things change. I think my best bet is to try and go to one of his consultations. However I am not sure if he will allow it.

He is getting a lot of pain in his right side of his back, so that has me thinking it may have gone to his liver.

I think I am just trying to mentally prepare myself because as you are aware it is all very "vague".

Thanks again for your comment

[muchy in reply to fayekay]

When my Mum was being vague about her Parkinson's I talked her round in a number of ways, like to do with caring for her etc...

But I also pointed out that it caused me a lot of anxiety because I didn't know what was going on, and that it wasn't fair for me to be so anxious just because she would not share information with me. Maybe that might work with your Dad.

I am a very open and well-informed person, but my daughter (who is a doctor) and often her boyfriend (who is also a doctor) accompany me to all my cancer consultations. Consultations are anxious times and anxiety interferes with memory so your Dad might genuinely not remember what is said, or it might be said in terms he does not understand (doctors sometimes do that).

[fayekay in reply to muchy]

Yes I think you must be right, he does have quite bad memory anyway so the anxiety may interfere with what and how he is hearing certain information. Hes an old fashioned guy and hard to open up. Your advice has been helpful I will talk to him tonight and see if I can go to his next appointment.

Thanks again

[glenys0924]

Your Dad should have a dedicated bowel specialist nurse who will have been with him throughout his treatment. Your information is too vague for me to offer any insight but clearly you need support. Ring the hospital where he had treatment and ask for the COLORECTAL CLINICAL NURSE SPECIALIST. That is the best person to liaiase with your dad and ask his permission to discuss his care and prognosis with you. The recent CT scan will have been looking for any spread of the cancer to liver or lungs which is where bowel cancer spreads to. Please contact the specialist nurse, she will know his case and answer your concerns with facts not conjecture. Good luck.

[jan25]

Hi,

I know exactly what you are going through! My lovely mum was diagnosed with bowel cancer almost 8 years ago, the oncologist gave my mum about 4 weeks, she fought and lasted almost a year!

Us children used to try and go along to the oncologist appointments with mum, just because she didn't want to hear anything negative, she would ask to be taken out of the room.

Mum didn't have any radiotherapy or chemotherapy, through her choice, maybe your dad has expressed the same?

Mum was in hospital for about 2 weeks after her op, she had a stoma bag fitted, then she was transferred to a care home for about a month or so and then she came home.

We had a MacMillan nurse come and stay with mum at nights, she had a fall out of her bed and was taken to hospital, also we had a carer call in three times during the day, I was there most of the time but it gave you someone to chat to about how mum was doing that day!

I'm not saying mum didn't have set backs, she did, I usually called the out of hours doc, mainly because mum was usually I'll late evening or early hours, they were always brilliant and mum would usually be in hospital for a couple of days before coming home again, feeling a lot better.

Mum had quite a few water infections, bless her, she went off with the fairies during these bouts, also she would haemorage occasionally!

We had access to the nurses at our surgery as well, always there to answer any questions about meds or mum's health.

Mum went back into a care home 10 mins away and was fine, right up until 24 hours before she passed, it was fairly quick, I don't think she was in any pain as she had regular morphine. It was peaceful!!

I would have as much contact with your dad's doc as possible at the surgery, try and keep to the same one, I found it easier, go along and sit in on any appointments with his oncologist, ask questions, get as much info as possible, get to know what meds your dad is on and when he should be taking them, try and recognise early signs of change in your dad, like with my mum, I got to know when she was getting a water infection and could then get her started on antibiotics earlier.

Good luck!

Jan x