Hello Folks,
I'm hoping I'm in the right place!
My father was diagnosed 4 weeks ago with oesophageal cancer. Consultant said due to his age (80) and other health conditions surgery or chemo was not an option.
Before this diagnosis I would see him most days but now obviously I want to be there even more to try and help as much especially with food and eating. I work too so plenty of juggling.
Whilst he's not in any pain at present he is struggling with swallowing certain foods (which is what brought about the investigation and diagnosis). The biggest, daily challenge, is getting him to understand he now needs to eat differently if he is to prevent vomiting.
It's tricky trying to get him to understand how important his eating habits are without banging on about his "incurable cancer". He is also quite forgetful of the day to day stuff although Doc has confirmed dementia doesn't appear to be a concern. Maybe the cancer is making him confused.
We are told the CT scan confirms it hasn't spread beyond the oesophagus but the tumor is a large mass T3 Tumor.
Thank you for reading
Hello Hed,
Welcome to the Forum, and thank you for sharing some of your Dad's story with us. It is very difficult when you are told that surgery and chemo are not an option, have they offered any kind of medication support at all or discussed any other kinds of treatment?
This must be extremely difficult for you too, has anyone offered any thoughts on what foods will be best for Dad, or how to make them easier for him to swallow?
If it helps, please call the Macmillan helpline using the number in the signature below, they are there to support both Dad and you and may be able to answer any questions that you may have.
There are other areas on this site which may be supportive to you as well as this one Like Family and Friends and Carers Only
Please feel free to reach out here at any time, and if we can help in anyway, we will
Take care of both of you
Lowe'
Hi Lowe,
Thank you for your reply. Apologies its taken a few days to respond.
Yes you are quite right it was hard to hear that Dad's cancer is incurable. The only suggested intervention is apparently a stent and the Consultant said they would want to wait as long as possible before doing that. Other than that... Palliative Community Care.
We have had a first visit from the District nurse to assess where Dad's at now and she will recontact after 1 month. His Doctor has prescribed some nutritional drinks and Dad is on a high dose of PPIs to help with inflammation.
The biggest issue right now is food intake and confusion. Dad isn't in any pain at the moment (some discomfort when eating and issues with breathing as he has COPD - he's a life long smoker). Whilst I know his diet should be smooth, moist, soft foods Dad isn't quite grasping the importance of this and constantly forgetting what he should eat, or when I ask, he can't even recall what he has eaten or whether he's been sick. I should say the confusion is not limited to just food discussions, he seems incredibly confused on and off regardless of subject or timing, and this has become very noticeable in the last few months (I wonder if it is related to the cancer). He sometimes goes with my suggestions for meals but sometimes doesn't. The results are mixed he may get away with some bread or toast one day but another it will simply not go down and cause him to bring it back up as its stuck half way. I have been trying very hard to get him to give up bread but he doesn't seem to make the connection that it causes him problems. He doesn't live with me but I try to see him every day, some days twice a day. I also phone him but he's hard of hearing too so that's a challenge! I leave him advice and a list of things I think he should try and eat that day, but some days I'll get there after work and he's bearly eaten anything. Even the nutritional drinks are missed. I've tried notes and lists to no avail. So we keep going round in circles with me trying to remind him what he should eat and why it's important, then him forgetting to either eat the right things or even eat at all. He is losing weight, 3-4 llbs in the last couple weeks, but that's no surprise.
I don't know how quickly the Tumor will grow and prevent food getting down and I'm scared of not recognising the importance of any changes in his day to day habits and therefore reporting that on to his GP / community nurse. He has already said he will not allow himself to be tube fed and doesn't want to "go into care" he wants to remain at home. So keeping him eating ok and maintaining his weight feels like it's the key to that.
Thank you for your suggestions, I have joined the Friends and a family Forum too so will keep an eye on both groups.
Any advice is welcomed. Thanks for listening to me rabbit on
Hayley
Hi Hayley
Don't ever feel that you are rabbiting on, we are here, it is not alway easy to know what to say, or when, but be sure that this forum is for all of us to reach and learn from each other.
The prescribed nutriment drinks are good, but there are a few different ones so if Dad does not get on with the one prescribed, ask the GP for an alternative.
Bread and Chicken are often the cause of Dal's food issues, though other things occasionally get stuck, it is hard to know what to avoid at tmes.
I understand that it can be difficult ensuring that he remembers to eat and drink, and this is made more difficult by the unknown reason for Dad's memory failing, I am unsure if you have ever heard of a Memo Minder - these are things that repeat messages that have been previously recorded and may be of interest.
I hope Dad is doing ok at the moment.
Take Care
Lowe'
Hi Lowe,
Thank you for your reply.
It's good to at least know that what he's experiencing with the food issues is the norm. I have tried different flavours of the supplement drinks but may look at different brands.
I like the idea the memo minder, I will look into that, thank you.
This week he seems to have completely lost his appetite so eating anything has been a bonus. I expect it will be up and down week to week.
Thank you again for your support.
HED
Hiya
my dad also has stage 4 incurable diagnosed in Feb.he’s only in early 60s and a complete shock He has had a stent fitted which appears to have helped with swallowing and has started chemo which has made him very poorly he has DPD enzyme which apparently makes side effects intensified and increases risk of toxicity. Every app seems to bring more bad news
it seems like the cruelest diagnosis and has effected all aspects of his daily living he can no longer safely drive and hasn’t been out the house due to the horrendous side effects of chemo .
anyway back to your dad I wonder as to why the consultant has said hang fire on the stent as dad was offered one at initial consultation
eating has been a total minefield dad has his prescription drinks and weetbix custard soup jelly etc prior to stent since stent has had more variety fish curry pasta crackers so it may help you both and encourage him to eat more and take pressure off u both altho I know others have problems with them
it may be different decisions on timeline on disease progression etc I’m unsure when / why stent are offered
Take care
Hi
Thanks for your message and support.
It is indeed a cruel disease and your Dad is so young to be facing an incurable diagnosis. It sounds like he is an active busy person so the impact must be hard to take sometimes.
My Dad was very stoic when he was told, immediately said that at 80 something's got to get you and he'd had a good life, bless him. The impact day to day for him hasn't been too bad as he was very much a home bod/hermit and didn't like to go out plus his breathing difficulty meant he's not able to walk far at all.
It sounds like your Dad has had a pretty tough time with the chemo. Do they scan again to see if it's doing its job and shrinking it? I will ask why they suggest delaying the stent for Dad. I wonder if they think it will be hard for Dad to cope with the process although he was OK with the endoscopy he had and didn't have sedation.
The foods he "liked" before he ever had the illness were a bit limiting... doesn't like pasta, rice, fish, chicken or pork so as you can imagine he's very limited on choice now... Lots of mashed potato. Loves bread and toast but his body certainly doesn't now!
I'm due a support call tomorrow from the GP team so may find out a bit more.
Did you get much detail from your Dad's CT scan and diagnosis. All we were told was "a large mass T3 Tumor". I see other people in the community seem to know quite a bit more about the findings from tests/scans.
Is your Dad due another chemo session soon, not sure how many they do in total. I hope he gets on better each time and his body adjusts.
Take care and stay strong.
H
Yep it’s been awful he has no other health conditions and prior to this he was out cycling paddle boarding wild swimming etc so it’s just in a word .. shit. I honestly can’t believe it it’s just the speed and seeing the deterioration in him as there was only troubles at Christmas that he thought related to reflux
he’s on a regime that is ongoing so no breaks .. iv every 3 weeks and oral daily chemo tablets he has appointment next week so they may discuss there hasn’t been any mention of rescan
dads is stage 4 OJ tumour with spread to liver not sure on the overall grading but basically bad !!
yeah my dad misses bread and hot cross buns he’s managing wraps now with smooth filling may be an option for your dad and encourage him to drink lots to help pass the food
stent may be worth chatting about to someone x
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