My Dad a had nephrectomy 5 years ago for kidney cancer. Two years ago his follow up CT showed that it had recurred on his liver. He was put on oral chemo which initially showed some response however on 1st April of this year he was told it had progressed (with 30 nodules on his liver, peritoneal lesions scattered throughout pelvis, and ascites). At this point his Oncologist told him he had up to 6 months to live.

I live a 3 hour train journey away from my Dad, and my 2 siblings live in a different country. My Dad didn’t tell any of us that his cancer had recurred (he didn’t have many side effects from the chemo so none of us noticed anything was amiss. He seemed slightly frailer but we attributed this to his Parkinsons that was diagnosed 2 years ago). He’s 63 and was living by himself.

He deteriorated rapidly in the last 3 weeks of April, losing a lot of weight, and his ascites were building up rapidly. He drove himself to A&E on the 24th of April due to the pain he was in from ascites and because he had urine retention. He stayed in hospital overnight for an ascitic drain and a catheter was fitted. He didn’t tell any of us of this until he called us on the 25th of April, very emotional, asking us to get to him ASAP (he wouldn’t even tell us why).

I got to him as soon as I could (arriving before my siblings as they had to get a flight), and was of course very shocked – he had lost a significant amount of weight (but with a very bloated stomach due to the ascites), looked grey and gaunt, had a catheter attached to himself, a temporary drain for the ascites left in from the hospital. He immediately needed 24 hour care.

I spoke to his Oncologist on the phone who told me everything that had happened. His GP came around on the 27th April to assess him, then informed us that he very likely only had 2- 3 weeks to live. He said he could go on longer, however this is unlikely and we need to prepare for the worst. That day I went to collect the ‘ end of life’ kit from the pharmacy ready for his last few days.

It is now nearly 12 weeks later and we are still in the same position. His GP is very surprised by this. We are very grateful for the extra time, however feel very in limbo at not knowing when it is going to happen. The GP is saying it can still happen in 2 weeks or it could be months. I asked what he meant by months, and what is the maximum amount of time he could realistically be around. The GP said he doesn’t know. I understand that no one can predict this, but we all feel we need a rough idea  about what months means – does it mean another 3 months max? Or does it mean possible another 9 or 12 months?

We have been staying with him in his small 1 bed flat. Me and my siblings are finding it hard to get into a routine. We’ve been living life with the assumption that he is dying in 2 weeks, but now it is three months later. If we know we had more time we could have a better plan between us, however we don’t want to go anywhere knowing it might only be another 2 weeks.

Fortunately, I have been able to work from home, and my work have been very supportive so far. However, if I’m here for an indefinite amount of time, I’m not sure they will continue being as supportive as they are. I’ve already used most of my annual leave to give me more time to care for him. One of my siblings might also have to return to the country she has been living in soon (for a number of reasons), which is of course stressing her out because she wants to be here if it’s going to be weeks – if she goes back it’s also one less helping pair of hands for me and my brother caring for him.

I know it’s hard to predict, but can anyone give a rough idea and the maximum amount of time that is likely? I don’t mean this in the way that I want it to happen – I really don’t, but for all of us to plan the future it would be helpful to know if this could go on for more than another 6 months or more? The GP has stressed the importance of us not leaving the town for longer than a day, so I know that he thinks it’s likely very soon, but he still can’t give a maximum amount of time.

Although he deteriorated very rapidly in April, he has been pretty much the same the last 3 months. He can still walk (with assistance and a frame, but it tires him out), sleeps for approx. 16-18hrs in a 24 hr period, his weight has stayed stable over the last 3 months, he is still eating in small portions, he gets very dizzy and feels sick a lot (but never vomits), some days he is cognitively slower than others, he has been delirious on the odd day here and there.

We’re also finding it very hard to manage his symptoms. He is having a lot of abdominal pain – especially where his liver is. We have been given liquid morphine but he will not accept larger doses, even though the lower dose is not easing his pain. I spoke to the McMillan nurse this morning for some tips on encouraging him to take more, so will try and encourage him to take more over this weekend. He has a lot of acid reflux – none of the tablets for this seem to be working. He feels sick, nauseated, and dizzy for most of his waken hours – none of the anti-sickness tablets ease this (tried Cyclizine, and Metoclopramide). He has a headache most of the time – again, no medication is helping with this. He has a lot of phlegm, which he finds distressing and he is constantly trying to clear it (the GP can’t give anything to reduce the phlegm because he is also suffering from a very dry mouth). He also finds his catheter uncomfortable (the district nurses can’t find anything wrong with it).

He doesn’t want to go into a hospice (until the final couple of days), and we would also rather we are all with him, caring for him at home.