Dad dying of oesophageal cancer

Dad had blood tests today at the doctors. The district nurse also visited at home, listened to his chest and said he must have an X-ray tomorrow He is worried he is feeling more chesty, like a heavy cold. But can’t bring much up.

Dad had his X-ray today. Going out has made him so tired. He fell asleep at the dining table after dinner tonight. He ate quite well but his growing tiredness and weakness is noticeable. He sat in front of the telly with his head in his hands. I feel so helpless. He just said he feels tired and has a bit of chest pain but he’s “ok”. He said he feels so useless. I said that was not true! He can still get upstairs to bed but very slowly. He says he isn’t in pain all the time, now he has morphine, but hates the tiredness. Rubbing his back helps the pain ease and his chest a little. Dad wants to be at home. He is very concerned that he might have to go back to hospital but he may need another blood transfusion, depending on his blood tests. If anaemia or not. 

Dad did not get up for breakfast or for lunch. Just a drink before breakfast time when he took his pills. He appeared very tired when I took him the pills. His face looked saggy (sorry not a good word) as he lay in bed and his voice was tired. He has missed breakfast a few times lately, but not lunch. I asked the palliative nurse today whether to wake him and encourage him to eat. She said to leave him sleeping and reminded us we have the district nurses and the Your Life Line number to ring if we are worried, as she is on leave for a few days. We have a lot of good, reliable people to call on. Got to give it to the local NHS system. 

Dad has continued to want to sleep a lot in the day. He gets up to have a meal, although I gave him breakfast (porridge & Ensure) in bed this morning with the football on telly. He also watches television in the evening still downstairs. Television gives him an escape. He has always been totally immersed in television programmes, especially good dramas, so I hope that he enjoys those for a bit longer. He enjoyed watching the World Cup girls win their match by penalties this morning. But in the daytime he’s largely sleeping and wanting to be in bed. He’s eating less and less. Just tiny meals, if he can manage those. He had his favourite macaroni cheese last night, but sadly was sick afterwards. This is the first time he’s been sick since he has had the stent fitted. He says he will probably just have to go on liquid foods now. We will try him again, and I will blend some of his favourite foods up a bit more. 

Sadly dad seems to have turned a corner for the worse. He did have a spoonful of porridge this morning for breakfast, but largely he has stayed in bed for the past two days and has not eaten more than two or three mouthfuls of food in that time. He says he strangely just doesn’t fancy anything at all. He has not wanted to get up to come and watch television downstairs. He does manage to get up to go to the toilet, but he is constipated or ‘can’t go’. Probably because he’s not eating. He had a particularly bad day yesterday feeling sick and in some pain. He apparently spoke with my mum this morning about maybe needing to go in a hospice. He has never talked about it before. He also talked about maybe needing the nurses to be called in. He had some liquid morphine and a laxative orange drink but they made him feel sick. He is currently sleeping and says he is much better when sleeping. He doesn’t like waking up. I rubbed some cream in his feet which he enjoyed. He is now back asleep. He asked me to check on him every couple of hours and not to wake him if asleep. My poor dad. This may be the beginning of the end of the road. I’m so sad for him. But trying not to be too worried for his and mum’s sake. He said he didn’t think he would go down this quickly. I phoned the local hospice to find out what the procedure is for getting in, if he decided he did want to go at some point soon. He needs a visit and referral from the palliative team, lifeline team (24/7 service) or doctor. She made me smile a little, said they ‘currently had spaces’ (only 12 beds, I thought these places had more) but they ‘go quickly’. At least I know what has to happen. Why am I always dealing with nurses etc on Friday, out of hours?

Dad has just got up and ‘been sick’ again. He told me he had been like it yesterday when I wasn’t there. It’s the clear liquid and fluffy spittle he is bringing up, looking the same as he brought up before the stent was fitted. He went back to bed saying he felt a bit better after being sick. He says the worst part is knowing that you won’t get better. Normally you know illness is only temporary and will get better. But this won’t. It’s hard to comprehend. He says he will tell me when he wants me to call someone. I hugged him and held him before he went back to bed. 

is it terribly selfish to want this nightmare to be over for my poor dad? He is skeletal. I don’t know how he keeps going. It’s true that you would not let a dog go through this. You wouldn’t. Why perpetuate this hell with stents and other interventions. I think it’s cruel. Sorry. I’m in a bad head space. 

Dad had a day in bed again. He can get to the toilet & had a shower. But he is painfully thin. Skeletal. I don’t know where he gets the strength to get up but he has always been strong and fit so presume he has fuel in the tank somehow. He had two tiny portions of soup for lunch and tea and kept it down. (I had to bring it up to bed for him. He couldn’t get downstairs today.) But he is still feeling sick at intervals and has to spit. I also have to remind him constantly to take his morphine and laxative etc. (How do people on their own cope with all this?)

He watched the England women’s quarter final game and that gave him joy. We were able to laugh and talk about it. We also had a hug. There’s not much of him to hug but I do. He said he is sad he won’t be able to stay with us all. He doesn’t want to leave us all. That broke my heart. My sister and I had a cry together tonight. 

I have no idea where this goes now. Although I know where we are heading. I’m scared and sad but hoping dad will not suffer this too much longer. He doesn’t deserve it. No one deserves this. Why is the end of life such a nasty joke? 

My sister encouraged Dad to have a small scoop of plain ice cream today. He enjoyed it. 

But we are losing him fast, I fear. He was so very tired today, sleeping most of the day. I don’t want to lose my Dad. My darling Dad.

Today, I asked how he was. He said, “I am trying to keep on surviving”. He again said it was sad that he would have to leave us. He doesn’t want to leave us. We don’t want him to go.

We got out the district nurse because he was worried about his bowel movements. She reassured him he was normal in that respect. Just no food in him.

He had a lovely chat with a very old friend on the phone. It was a heartbreaking call where he told them thank you for being such a great friend and to remember all the good times. The dances in the 50s & 60s when they would dress up to go dancing. All the fun. He sounded like his old self for the call, perked up considerably. Like his old self. Not one cough. But it exhausted him and he slept the rest of the day  

I don’t want to remember him suffering like this, struggling to sit up in bed. Or keep a drink down. My Dad is not like this. He is strong and wonderful.

The palliative nurses are going to see him and assess him tomorrow, to see if he can be made more comfortable. But he’s determined not to go into hospital. That scares him most, I think, the thought of dying in a hospital, with all the noise and impersonal stuff going on around him. 

Just to say that I’m thinking of you and your Dad. My partner has incurable oesophageal cancer as well; though he is a lot younger than your Dad. I appreciate you sharing what’s happening you for you and your Dad, and am sending lots of love. My partner has been linking in with old friends too; it feels so bitter sweet to see. I hope that you and I will both be able to look back and remember all the wonderful times, with the last months as a small part; I’m sure that will take a long time but I hope that’s the way it will work. Such a tough time for you all . 

Thank you. I think this thread is a bit of therapy for me. But something in it may help someone. As long as they don’t get depressed.