I spent so long trawling this site looking for advice and tips i only felt it fair to share my story in the hope it may help someone else....

I lost my Dad to cancer on the 19th February 2017. It all happened very quick for us. Dad had previously (2013) had surgery to remove skin cancer that had spread to his lymph nodes and following that we were led to believe was all clear. We are since learning that there were some secrets that Dad was keeping to himself, so i can only tell things from my perspective. He spent a week in hospital at the end of Jan/beginning of Feb as he was unwell, and came out on Friday 3rd Feb and told each of us 'kids' that the cancer was back and in his liver and lungs, though they didn't know what the primary was. Dad told me there and then he didn't think he had long and joked i would be coming back for his funeral in 3 months (i live 3 hours away and didn't visit as often as i would like).

At this point, Dad felt unwell but was still doing his routine of getting up and eating small meals, he wasn't bedbound at all. he continued in this vain until Wednesday 15th Feb. Dad had a plethora of medical problems over the years and didn't want to spend his last days in hospital, and requested to die at home. So the arrangements were made and the hospital bed arrived on the same Wednesday. It seemed this day was the turning point as it was on this day that his GP stopped all of his previous medication and that night Dad began suffering unimaginable pain and was in constant distress, and for the first time climbed into the hospital bed.

I arrived on the Thursday and the district nurse was there fitting the driver. The next 48 hours were hell. They just couldn't get on top of his pain and he writhed about the bed in distress. The pattern was we would phone for help, wait anywhere from 1.5hrs to 4 hrs for someone to come, they would then give him an injection to top up his medication which would help him settle for 2 hours and then the whole thing would start again. I have never felt so helpless in my life, it was horrific. We were told by the nurses that it wasn't meant to be like that and they were sorry etc, but that didn't solve the problem.

The second night i count meself blessed as i had a night sitter from Age UK with me, and thank God i did. It was this night my Dad became incontinent, we hadn't been warned or left any supplies such as incontinence pads. So when the bed was wet the two of us had a manhandle my Dad as carefully as we could whilst he screamed in agony whenever he was touched to try and change the bed. We did this 4 times. When morning came we were finally able to get someone out to give him his top up meds and then go and buy some incontinence pads. Now don't get me wrong, everyone was doing their best but my Dads condition worsened quicker than anyone imagined. However, i still think it is so unfair how much he suffered.

The decline was obvious, perhaps more so because it was quick. When i first arrived Thursday he knew who i was, but on Friday he seemed to look through me and seemed to be confused. When he cried out for help he screamed for mummy and daddy, rather then for my mum as he had the previous night. i should mention that throughout this he was not eating but had the occasional sip of water and also had some Fortisip Friday day time. He didn't stop accepting fluids until friday night. Thankfully, on Saturday they finally got him the right mix of drugs which meant he was no longer in agony or distress, the downside of this was he also seemed to have lost consciousness. I'm not sure if this was down to the drugs alone or whether this was also a natural progression of the disease and he had just finally exhausted himself. Either way, we were just pleased to see him at peace after the last 60 hours of hell.

So, Saturday from about 10am my dad was unconscious in his bed. The carers that came in were able to clean him and turn him into comfortable positions without him screaming and this was done at 7pm Saturday night. i hadn't slept the previous two nights, so i was glad to see him relaxed and grateful that i would be able to get some sleep on the sofa whilst still listening out for him just in case. About 7.30pm i noticed that Dads breathing was begining to rattle a little. i didn't think too much of it as he was rattly on Friday too but had been trying to cough it away. He had also received an injection on the Saturday morning to lessen the mucus production. However, i did wonder if this was the beginning of the end.

I settled down on the sofa at 10.30pm to try and go to sleep but his breathing had become progressively more rattly, so i began to google the death rattle wondering if that was what i was hearing. Needless to say i couldn't sleep so sat with him and talked to him whilst stroking his head. The rattle continued and around 11.30pm his breathing became slightly more laboured with a grunt with each exhale. Watching someone die is awful. but i watched him take his last few breathes until at about 12am he took his last, he then did this strange thing with his tongue, almost where it swelled to be too large for his mouth and it looked like he was sucking on it. That stopped and at about 12.05 there was a last exhale which was more like a roar and made me jump out of my skin and then his face went completely slack. I have to admit i still wasn't sure if he was gone. i was so tired my eyes were playing tricks on me and i thought i could still see the covers moving. But my hand placed gently on his chest confirmed that his body was still.

I'm sorry this is so long and detailed but when i was searching the forums details was all i wanted. He passed less than 24 hours after the death rattle began, and for me the sound was not scary, but reminded me of the smoking pipes that you see in Turkish restaurants where the fluid bubbles when the user sucks on the pipe. The regression, glazed eyes and rattle are definite signs that their time is near.

On another note this experience has defintely put me off the idea of wanting to die at home. I do not want my children to have to care for me and to be put in a postion of feeling so helpless. I know that in many cases it works, but in my experience dying at home is a horrible and undignified way to go that puts immense pressure on the family when they are already grieving. For anyone making this decision i think it is important to have views from both sides.

My thoughts are with anyone touched by this horrific disease, just remember you are stronger than you could possible imagine and will get through it. My thanks go to anyone who works with people touched by cancer, as you are a special kind of person, and you will be remembered by every client and family member you come into contact with, as you do not realise how much your presence is a relief and a comfort.