Hi, my 63 year old father passed away this week as a result of secondary liver cancer, the primary was bowel cancer (which had also spread to his lungs, though the oncologists regarded the tumours on his lungs with far less concern than those on his liver). He was diagnosed with bowel cancer in 2007, after having almost no symptoms until the 11th hour (he was severely constipated for over a week all of a sudden, which led to severe vomiting, casualty, a hospital stay of two nights and 28cm bowel obstruction successfully removed and the results of the tumour take out were malignant - this was back in Autumn 2007). Despite having two rounds of chemo over the two years, the first didn't work too well, the second did work in shrinking tumours but my father was taken of it on cycle 8 out of 12 as side effects of the drug threatened to kill him with a life threatening stroke or heart attack - he developed a blood clot on his lung. Signs of this clot were him not being able to lie down on his side one night, and a bit of pain there - though he never described that as agonising so be aware. The oncologist said that was an unusual reaction to the chemo drug. He then was offered a little hope toward the end of this summer with the potential to go on a drug trial, with a renowned professor, though he was never accepted on this as it was deemed to dangerous in light of blood test results relating to liver function. My father spent virtually all of his 2 years with cancer taking the dog on long walks, flying long haul to visit me in New York twice, getting on public transport, walking lots over there, going to the pub to meet his friends for a pint once a week, going on holidays to Scotland doing lots of walking with my mam, socialising with friends and family and retaining his friendly, cheerful, gentleman like demeanour. No tears EVER, no bad moods, no depressing talks or even mention of prognosis, perhaps a little more prone to tiredness than usual. Fast forward to a month ago, when I came to visit him from NY - he was suddenly out of the blue a lot more tired and exhausted. He'd been taking steroids about 2 weeks prior to my visit and recently come off then. He was also on the blood thinner warfarin which needs careful monitoring. During my stay he was admitted to hospital, with suspect internal bleeding - they though the pain in his side was a result of misbalance of warfarin and perhaps the extreme tiredness as a result of suddenly being taken off steroids. He was immediately put back on steroids, and the warfarin adjusted - but no avail, as he continued to visit the his weekly warfarin clinic they just couldn't seem to get the balance of his dose right and his INR (which measures the clotting ability of his blood) was off the acceptable scale most of the time. A misbalance of drugs masked the fact that liver failure was taking its effect. The whites of his eyes became slightly jaundiced about 3 weeks ago but just his eyes. As a week progressed his face was a shade of jaundice. He remained his normal self but VERY tired, and took tramadol the pain killer only occasionally (say every two days for a 'stitch like pain that wouldn't go away in his side'). I returned to New York, but last Saturday after knowing my Dad had been increasingly tired received a call from my mother saying Dad had been admitted to hospital. He'd had a bad nights sleep on the Friday night, was a little disorientated and on Saturday afternoon when the on call GP reached him at our home he failed a basic coordination test which involved aligning his hands together - the doctor said it was best to admit him into hospital for tests. Dad was admitted to an 'acute care ward' as it was a weekend. I've since heard if it had been a weekday, they may have admitted him into a hospice for a night or two for assessment instead. He had a side room, and was the sickest on the ward by far - everyone else was in wards and were able to hold cups by themselves, talk in full sentences and achieve some sound sleep but not my Dad. By Saturday he was writhing on a bed grabbing the cot sides in pain, he was still talking but with one word answers or very short sentences. By Sunday I was on route to the UK on a plane, meanwhile my mother stayed up all night with my father as he was deteriorating so rapidly, he was down to one word answers and had to use a bedpan for the bathroom or a commode - he was bedridden. He was still taking his medication - steroids, pain killer, anti indigestion etc orally - they were all syrups and able to eat very soft food, like soggy wheatabix or ice cream which was one of the few things he seemed to enjoy at this stage. I arrived on Monday morning at 8am, I took a deep breath and walked into his hospital room. He slowly, slowly turned his head to look at me, his eyes were deep yellow and his skin was a definite yellow, his face a little bloated and the dejected, fed up look in his expression was one of the most remarkable things. I'd never seen such suffering in a man right before my eyes in my life. I held it together for him, as I was conscious not to heighten any anxiety I'm sure he must have felt, told him I loved him and my Dad reach out to hug me and said 'good' in reply. He was totally lucid just so exhausted he was unable to express himself or his wishes properly. As the day progressed my mother went home, leaving me with Dad as she had to urgently let the Macmillan delivery guys into our house to deliver a hospital bed, a commode, a table for a patient to eat off. It took until 5pm for the special ambulance to arrive and for his drugs to come from the pharmacy for him to be discharged. He was sent home with drugs suitable to administers via a syringe driver, for when he wouldn't be able swallow. The discharge process was a mess. He had a yellow prescription chart for the drugs for the driver which we had to take home, it had to be signed off by a Doctor - so a district nurse visiting our home could simply fit the syringe driver whenever my father reached the stage of not being able to swallow drugs orally. The nurses at the hospital checked over the form and said it was good to go - but we later discovered it wasn't, there was a second section which hadn't been signed off by a doctor. After eating tiny spoonfuls of yoghurt on Monday evening and having deep sleep on Monday night, when my father 'woke up' (he wouldn't open his eyes and was in a semi coma, though he did scream out when carers handled his severely swollen legs to wash him) Most significantly he was unable to swallow drugs orally, and I had to waste a lot of time with phone calls back and forth to my GP's surgery to get district nurses out to him immediately (I was told to ring the nurses direct myself, the nurses told me for them to arrive as an emergency the GP had to dispatch them..) After time wasted with these calls the nurses arrived to tell me they could only count the drugs and could not administer them until the doctor arrived. Fortunately I made the judgement call to get the on call Doctor out as an emergency in addition to this, as I mentioned to her on the phone his breathing was becoming laboured and that we were NOT achieving the goal of making sure he was comfortable. It was around midday and he'd had NO medication just a droplet or two or oramorph the pain killer. The doctor arrived and completed the incomplete prescription chart. The driver was fitted, with the syringe in my fathers hand. I was told as it was subcutaneous it would take around 30 mins or so to kick in and the drugs given were a sedative (which I was most concerned with as I hated the thought of him panicking about dying and what the next step after death is), morphine for pain and anti sickness drug. The nurses and doctor left about 20 minutes later, and after a few moments my father opened his eyes for the first time that day and just stared as if unable to focus. My mother and I were holding his hands, kissing him, telling him he wasn't alone ever and how much we loved him. He then shut his eyes again and took his last few breaths, very peacefully..and that was the end. This is a long story and still so fresh. His funeral hasn't even happened yet. I've learnt so much from it though and in short, I'd say that a most of the time liver failure will eventually become evident where a liver secondary is concerned. First of all when jaundice comes, this is a sign of a build of a the waste product bilirubin in the blood, which the liver normally expels into the bowels - giving poo a brownish red colour. Poos become white, whilst eyes first then skin takes on a yellow tinge. Urine will become red looking, as if blood is in it - but the strong colour is the bilirubin. When these symptoms show, this means liver failure is already very WELL advanced. Dad was becoming exhausted complaining "I just want my energy back" - he didn't want to drive his beloved car or even get out of the car for a breath of fresh air when my mam drove to the beach to let the dog out. He couldn't manage a walk around the block, where as he could 2 weeks before he died. Severe tiredness is also a sign. Then comes acute liver failure, at this stage Dad was becoming a little confused but remained totally lucid - the confusion was very subtle in his case - he'd ask the same question twice in a short space of time and went into the wrong bedroom after getting up for the toilet in the night (though my Mam had just swapped his bedroom to another room earlier that evening, so again subtle signs of confusion). Eventually my Dad simply became too weak to talk, walk, sleep properly, eat or drink. He went from walking talking eating and drinking to being bedridden writhing in pain, unable to talk in a matter of 4 days. I also think he may have hung on longer suppressing his pain and demise waiting for me to arrive from the USA to see him. He was so brave in the face of it all and considerate to the end, looking pleased saying 'good' when I told him my mam and me were going to have a lie down after 2 days of no sleep the night before he died. His legs were very swollen and so painful to touch he cried out when he was moved. He writhed around a lot unable to get comfortable and clung onto much needed cot sides of the hospital bed. The bed delivered to our home didn't have cot sides so we had to line up two arm chairs against it to stop him from falling out and my mam broke down in tears holding his swollen legs. I forgot to mention that only my mam and I were with him at home during discharge, I am in the third trimester of pregnancy and we were left alone with him at home in a state of discomfort until district nurses arrived at 8pm. Fortunately my uncle who's a GP arrived earlier and helped reposition him - you need 2 able bodied people to move and reposition a 12 stone sick man - you don't realise how much they writhe around into uncomfortable and potentially dangerous positions. A consultant told my mam my Dad was dying on Saturday night but why a Macmillan nurse was not with us to over see his discharge I don't know. Our Macmillan nurse was lovely, but she came after my father passed away - about 30 minutes later. The Monday night before my father's death, he was watched by Macmillan carers NOT qualified nurses. They were lovely women - but it was so close to the end someone should have been on hand to inject him with a pain killer if needs be. There was a big boo boo with his yellow prescription chart for the drugs administered by the syringe driver - no one took ownership over my Dad's case on the acute care ward at the hospital, and though some staff were exceptional - others were a little clueless tending to talking eating drinking patients in a communal ward, before my dying father in a side room alone with his pregnant daughter. He couldn't talk or eat properly, or drink without a baby's cup being held up to him. Some nurses just didn't use common sense or experience to set their priorities straight. So my advice in short to anyone caring for a patient with a liver secondary which is terminal is: Don't focus on prognosis -there are so many good times my Dad and I had while he had cancer, it didn't stop him from being him and enjoying life until right up until the end really ( I mean 3 weeks before his death). Look out for any signs of liver failure - I mentioned them earlier such as the jaundice etc. When this comes you know the end isn't in the distant future - I'm talking weeks. At this stage be brave and get Macmillan and your assigned nurse as heavily involved as possible. Look out for signs of acute liver failure - severe tiredness, the onset of which seems to happen quickly, very subtle signs of slight disorientation or confusion. It may just be being slower in response to questions or sounding unenthusiastic and a lot quieter than usual on the telephone etc. At this stage go through a checklist of equipment in your mind - you will want your loved one to be comfortable at home at the end and you will need things like: a baby beaker to drink straws oral syringe A large plastic washing up bowel to fill up with hot water to wash patient in bedside. New Sponges At least 3 new sheets for a single bed, patient is most comfortable with thin sheets. 2-3 fitted sheets for a single bed. Clean towels. Baby Wipes. Antiseptic Wipes Dentyl Alcohol free double layer mouthwash (helps with oral thrush common at this stage) - don't bother with this during the very later stages, you don't want the patient to swallow it. Pineapple//Orange Juice Ice-Cream Favourite Foods Bottled water Still Little sponges on sticks to dip in water or pineapple juice to freshen and clean the mouth - district nurses a bed pan - district nurses provide catheter tubes - district nurses Incontinence pads - district nurses Ask Macmillan social worker about ordering a hospital bed WITH COT SIDES (essential), a commode and table to eat off that hangs over the bed, in advance. Think about close family members that the patient would take comfort in having bedside for this harrowing experience. Deterioration will last not much longer than a week if acute liver failure sets in - although all patients are different, it's a given that liver failure can be as quick as 48 hours in some cases. As signs of liver failure progress, to pain and restlessness you will need 2 able bodied adults to be present at all times to reposition and help lift the patient. If a patient is in hospital or a hospice - you will need 2 able bodied adults to help settle the patient into their home on the day of discharge. If you don't have family or friends suitable for this very personal close experience, contact Macmillan and say you would like a nurse plus at least one carer present. Be pushy and adamant about this - your job is to hold the patients hand and reassure them, otherwise you'll be running round frantically making calls, searching for equipment and struggling to move the patient compromising their lovely of comfort and your precious time with them during their final days. I'd try to source most of the equipment in private in advance so patient doesn't know, but it's important to have your house well stocked as deterioration can happen overnight and take you by surprise. Also think well in advance about rearranging your house. We didn't want to move furniture until last minute for psychological reasons - we thought my Dad would think we were assuming he was ready to die if we put a bed downstairs too soon. However, I wish we'd moved furniture in advance to make space for a bed, even if the bed wasn't there until later on. Finally, before patient is discharged from hospital the most important drugs are the drugs for the syringe driver. As it is a given that eventually patient will not be able to swallow eventually. The syringe driver drugs are in boxes and they come with a YELLOW PRESCRIPTION CHART WHICH YOU SHOULD PRESENT TO A DOCTOR OR HOSPITAL PHARMACIST TO ENSURE IT HAS BEEN PROPERLY SIGNED OFF FOR (otherwise when you're panicking because patient is in pain and unable to swallow at home, district nurses will not be able to give the drug unless it was signed off for - this could leave a patient in pain for 30 mins or more waiting for an emergency on call doctor to arrive to sign a piece of paper). A high level nurse told me our yellow slip was adequately signed off for in the hospital but it wasn't. It is well worth noting that my Dad was lucid until the end This is such a long post but it's a reflection of just how much there is to coordinate near the end and how important it is to be proactive and anticipate it YOURSELF because Doctors nurses, and MacMillan nurses won't do it for you. They will not spell it out or commit to saying how quick it will be, as yes it's different for the individual. You do not want to be left vulnerable, MacMillan nurses can be really helpful but you need to chase this help, it is not readily available and largely depends upon factors such as how efficient your social worker is and if he/she has good foresight and can handle a busy schedule with an air of control. Beware that YOU will be assessing the situation and making important judgement calls yourself. Make it clear if you don't have home help and demand it, don't be proud.
