Dad dying of oesophageal cancer

The hospice my dad is in, is a treasure. The staff are so dedicated and lovely. Mum and I got there and dad was being seen to, so we sat in the garden. It was such a lovely day today. But my mum surprised me saying she felt it was “very final”, sitting there. she doesn’t often say things like that.

We sat with Dad for quite a few hours. We went outside for lunch but spent most time in his room. He watched the semi-final of the women’s World Cup, but much of the rest of the time was asleep or resting his eyes. I do hope you get to see the final, Dad. 

He is just so frail, still so uncomfortable, a little restless at times, a little confused at times and doesn’t feel well at all most of the time, even though he has a syringe pump with anti-nausea and pain killing medicines. He also now has a drip for fluids. But he still seems so uncomfortable a lot of the time and so depressed. But my mum sat with him and held his hand and he seemed much more calm with her there. He managed a mouthful or two of potato and butter and a few sips of apple juice and a little ice cream. They have an ice cream freezer for patients.

Dad told the nurse today, she told me, “I’m not feeling the way I normally feel.” :(  He had blood tests in and he has high calcium in his blood. Apparently common for the cancer he has. Not good for feeling well. I’m going to write something I found unsettling here, sorry. I don’t want to upset anyone, but Dad, a couple of times, made noises when he was sleeping, like a snore but deeper in the chest. I think it was his cancer laughing at me. I hate this bloody thing. Why haven’t they found a cure yet? 

One thing that really brought my Dad back to himself today, that brought a smile to his face, was the hospice bringing in a small pony to visit all the patients. It was a really surreal and happy moment. Dad loves all animals. And he absolutely loved it. He reached out to stroke that pony and all his troubles went away for a moment.

Tonight, back at my parents’ home, I am so sad. I know he’s suffering. But I just don’t want to lose him. I love my Dad so much. But I know he has to go. 

I know what you are going through and as much as you don't want him to go you do not want him to be in pain for any longer than needed.  Spend as much time with him as you can, let him know you are there, speak to him even when he appears to be sleeping  as majority of the time they can still hear you, if there is anything you have been wanting to say to him, say it as you do not want to have any regrets even say it when he is sleeping.   My Dad would say similar things to us like " I dont know what is wrong with me, I don't know what I want" and I suppose that is similar to your Dad saying he does not feel the way he normally feels .... Damn Cancer !!! sending lots of love and strenth

Aw, thank you. Those words mean an awful lot. Thank you. xx

Mum and I both had a terrible night. Couldn’t sleep much at all. And I also had to catch up on some work queries from a distance. Work is so unimportant, isn’t it? Except to pay the bills, I suppose. I do not know how people cope if this happens to them at working age. If it happens to a younger person in the prime of their life. How do they cope financially or if they have young children? I have the luxury of freelance work. I can do my work from mum’s. But many people can’t. 

Today we visited Dad earlier. He is being given more fluids and medicines plus antibiotics now as he has an infection somewhere. They aren’t sure where. That is a worry. He could talk to us a little, but mostly sleeping. He knew we were there. He can’t take much in at once, so one tiny question at a time. And not too much talking.

His coughing seems to have stopped. I’m glad. But why? Strange phases his body goes through.

Mum is very tired by this, so we are going to my sister’s home for a meal tonight and a change of scenery. I may go back to see Dad later this evening on my own. I feel it’s a long time until tomorrow. 

My other worries. When I’m, or my sister, are not there at the hospice, is anyone offering him drinks he likes? He had a few mouthfuls of shandy this morning! The nurse said it was ok. Is anyone helping him with the potato and butter? Are they putting on enough butter? Do they change his padded pants enough? Do they check for bed sores enough? Must trust more but these are things I’d like to know. But don’t want to keep interfering either! The hospice is a terrific place, it really is.

Thinking of you and your family. I hope your dad is comfortable and being well cared for. Make sure you take some time for you too although I know how difficult that is. It’s good that you have flexible working, but you’re right it is so unimportant and we are all only there to pay the bills when it comes to times like this. Sending love and strength xxx 

Visited twice today. Dad is in some pain in his chest. And was uncomfortable with his catheter and toilet matters. Tonight he was really tired and sleepy and a bit confused. He said, “We must do something about bullfighting”. I just agreed. Always the animal lover. I suppose continual pain makes you confused. I don’t know if they have got the infection under control. They have him on a morphine patch now. I hope it works for him over night. But was so very harrowing to see him suffer quietly like this today. He did apparently eat a little mousse and custard and he drank a little tea with me this morning. 

This evening my husband visited my dad. They used to work together and shared many stories and fun times. Dad greeted my husband with the cheekiest smile and said something quietly like, “He probably looks at me and says what a poor old g!t.” Banter together to the end. 

You visit as much as you need to there is no right or wrong  this horrible disease take everything but as long as your dad has you there that is what is important. Lots of love x

Today we visited Dad late morning. Dad recognised mum when she held his hand and said hello. They told us Dad had had some Ready Brek and drinks. He was a little restless, didn’t want his feet covered. His breathing is very irregular, his chest moves in patterns. Shorter and longer breaths. I rubbed his feet again. He always likes that. Or used to. Hope he does. It seems to calm him, touch, whether it is a gentle foot or back rub or mum’s hand on his.

The nurse gave him antibiotics and painkillers by mouth. He has no canulas or drips in because he keeps pulling them out. After 10 mins he went to sleep. He seemed at peace and we left him so. 

The hospice is lovely. I can’t say it enough. The man who makes the food, the staff who bring it, the nurses and doctors. Cannot fault it. We take our own food in. The gardens and cafe/sitting area are lovely. A pleasant place to be. If we sadly have to be doing this. 

Thank you for documenting your days and how your father is getting on. Sending you lots of love and strength. 

My father also has terminal oesophagus cancer, also in his liver and in the last couple of months it went to his spine. He has no feeling from the chest down anymore. 

He came home a few weeks ago but is back in hospital with double pneumonia. He were told he was 50/50 on Friday night but he is still with us. 

A lot of what you have touched on I have felt. I want my Dad around forever, but when this is the quality of life he has, is it really a good thing. 

I work, and as you say it just feels very pointless when you consider what is going on. I am definitely not able to give everything 100%. There is only so much of you to go round! 

I stay with my parents for part of the week to spend quality time with him. Everyday feels like something new happens or a new ailment appears. We have lots of toilet issues with him having to have laxatives and not being able to make it to the loo means a lot of clean ups. We have carers who come to help. 

I also don't think it will be long. Hard to know what to do and what you might regret not doing. But you also have a life of your own to lead that he will want you to live. I am very lucky and it sounds like you are too, that my Dad and I have always been ones to say "I love you" and "I am proud of you". Everyone says leave nothing unsaid, but there will be tons of things I won't ever say. I am married but don't have children (in my twenties), he will never know if I do have them, won't see my 30th birthday, his ruby wedding anniversary etc. Also wants to see spring flowers again, which unfortunately won't be the case. 

Anger and sadness go hand in hand at the moment. 

I am so sorry to hear about your father. And yes, it is a difficult situation, you being younger and the things your dad won’t see. Big hugs. In the end dad could not go to the toilet (1 or 2)  and the only option left was the hospice, it was that bad. He has a catheter here. 

I wrote my dad a letter when he was fairly newly diagnosed and still able to read it. I wrote as much in it as I could think of to say to him. Memories I treasure, how grateful I am for the things he has done for me etc. He read it once and maybe didn’t take it all in. The second time he said he read it again and it meant a lot to him. Write to your dad and read it out to him, while he can still take it in. If he can read it, let him read it himself. Maybe tell him how you will let your children know all about him through photos, videos and memories. Tell him what you might call them. Tell him what you’ll do with them that he used to do with you. Tell him you’ll plant some spring flowers for him and they will remind you of him in the spring. 

I so send you big hugs. This is very hard.