Feeling guilty and selfish

You sound as if you are a lovely supporting daughter. You can’t pour from an empty cup. Try and get some support for you. Have you got to the bottom of why she doesn’t want to eat? Sending love - you’re doing the best you can, don’t waste time on guilt, of course you want her to have as much time as possible for both of you. That was a good goal - it is sad that she won’t eat, maybe get a dietitian to talk with her. 

Thanks Jenks65. Everything is a bit of a rollercoaster at the moment - one good day, one bad day (for me and Mum - often at opposite times!) My current tactic re the eating is to tell her to forget the fact that she doesn't fancy or enjoy food any more. Instead she needs to think of it like the medication she takes - she may not want it but she can eat it, it doesn't cause pain or discomfort, and it will help her feel stronger. It's exhausting though. A hospice nurse visited this week and was very reassuring and helpful. She said she would help with arranging a Social Services care package though I'm not sure how long it will take. It's hard to know how all the pieces of the support jigsaw fit together! Anyway, thanks for your kind words. 

My Hubby died of Oesophageal cancer in Nov, 3 months after diagnosis. His dietician recommended eating things with strong flavours after his stent was fitted. He really enjoyed lemon cheesecake. I also cooked things like braised steak in Guinness but put it through the blender. Anything that could be blended was. Whatever he fancied he got. He also ate a lot of poached eggs.

Hi Detty. Thank you for the advice - I just wish Mum would fancy something, ANYTHING! The nearest I've got to a 'I quite enjoyed that' was a chocolate mousse! I guess it's going to be trial and error. Did your hubby stay in bed a lot after diagnosis? Sorry - I just don't know what's 'normal' or what to expect. Mum's sleeping a lot and is quite comfy in her bed but I don't really know if that's because of the cancer or because she's refusing food. 

 Here's our story. I hope it gives you some insight.  Obviously eveyone who has OC is different & a lot depends on how advanced they are when they get diagnosed , what type & what treatment they receive.

Once hubby was discharged the 1st time from hospital after diagnosis he was on a food pump for 12 hrs a day which he hated & a syringe driver for his pain meds.  He was constantly spitting up slime.We only went out for hospital visits as he didnt want anyone to see him. He didnt even tell his family at first. Once he had the stent fitted he felt a lot better & the spitting up stopped completely & the food pump went back to the suppliers. He even came off the syringe driver for a couple of weeks as he was able to swallow tablets. His food intake was much better & he actually put a bit of weight on.one Sunday he started being sick & couldn't stop so we rang an ambulance & ended up in hospital for 4 days. It turns out the stent had slipped but he could still eat ..just finer pureed & smaller amounts of food. He ended up back on the syringe driver as they didnt want to chance him swallowing tablet form of morphine anymore. He was fine again for another 3 weeks then the sickness came back & the District nurses said he had to go back into hospital. He really didnt want to go back in but they explained that he could have a massive bleed at any point due to where the stent was lying on his tumour. He agreed to go back in & that was the beginning of the end. Over a few days he had 8 units of blood & it didnt bring his hemaglobin levels up so they stopped all treatment apart from pain meds. They didnt even bother to do observations. He wasn't getting his pain meds on time & was often left in severe pain. I'm just glad that I was with him & could chase the staff for his meds. I had him moved twice to different wards as his treatment was diabolical.He was on an air mattress as he was literally skin & bone . I did take food in that he He wasnt eating cos the food was so bad. The catering staff kept coming in asking if he wanted sandwiches despite me telling them every time he couldnt swallow. I did take in anything he asked for. One day he said he fancied chips & gravy so I went to the restaurant & got a portion of chips & a pot of gravy..hemanagaged about a dozen chips mashed into the gravy & his comment was ' its nowt like your gravy!!' The palliative team were trying to get him into the hospice. He was left on the toilet at least twice when I had gone home for a break & some rest. He tried to get back to bed on his own but was so weak he collapsed in the bathroom. The nurses denied this had happened but he had no reason to lie. He begged the palliative team to help him die as he had had enough. He was in hospital for 3 weeks before we got a bed in the hospice & as soon as we got in there they did a full set of obs. Put him back on some of the medications that should never have been stopped in the 1st place. The hospice chef came in to ask him what he wanted to eat & made him some soup that he asked for..it was the 1st thing he had eaten in 2 weeks he only managed a few spoons but it was something. He very quickly went downhill & died 38 hrs later. It was very peaceful though I was just glad he was out of pain. I can honestly say Oesophageal cancer is the worst cancer. Its the 3rd time my family has had to see members suffer with it. My nan had it then my mum..they both had a different type to my hubby & they had about 18 months between diagnosis & passing away. My hubby had adenocarcinoma T3N2M1  & he only had 3 months from diagnosis.We were told he would unlikely Christmas but we were hoping it would be longer but he died on 24th November. I went from working to be a full time carer/ PA. I was constantly on the phone sorting out appointments chasing up meds from the gp.Then nothing. My sisters & son have been a godsend. My workmates have also been so supportive.  I am going back into work this week ..just mornings at first because I have got a lot of leave to use up. I've also got a kitten he helps keeps my mind off things. Theres so many if only's. 

Hi Detty. Thank you so much for sharing your story - as you say, everyone's experience will be different but it's given me some insight into what may come/what to look out for. I have to say that your resilience and patience in the face of such terrifying circumstances is remarkable.

I do hope your return to work has gone well. I'm self-employed and have set up a computer at Mum's so I can continue with some projects in-between care duties - it gives me some purpose and, of course, means I can still earn a bit and retain some clients (no sick pay when you're self-employed).

We're still at early stages yet. Mum isn't in any pain that a paracetamol won't take away and she's started to eat a tiny bit more, which has given her the energy to at least go downstairs and watch some TV. Despite her age, she was very active before, so it's heartbreaking to see her like this - so exhausted and languid. I doubt she'd even be able to make herself a cup of tea under current circumstances.

My job for today is to try to get some kind of response from Social Services re a care package, just for a couple of days a week. I'm wondering if carers might be better at persuading Mum to eat - she gets away with it with me because I give in! She might try to 'please' the professionals.  Maybe we need some of your special gravy! 

Thank you again for writing - and I hope your kitten is delightful company.