Does speaking to a MacMillan nurse after endoscopy mean a cancer diagnosis?

[SpanishFlea]

My dad has had some stomach issues the last few weeks and had a camera investigation earlier today. He just phoned me to say that they found a 'growth' on his oesphagus that was too large to fit the camera further down, but they 'don't know what it is'. He also said he spoke to a MacMillan nurse. He didn't use the word cancer except once where he sort of said it was cancer, but he mostly focused on telling me that they don't know what it is.

I'm just wondering for my own understanding (as he's currently being upbeat about it so I'm not going to tell him the answers from this thread!), would he have spoken to a MacMillan nurse if it might not be cancer? In other words, was my dad telling me clumsily that he has oesophegal cancer?

FWIW I was upbeat and positive on the phone, however, this is all a bit of a shock. Happened only 10 mins ago so please be gentle with me 😞

I had chemo.+ surgery+ chemo for oesphaegeal cancer 13 years ago when I was in late 60s.
They have really effective anti emetics these days and I coped well with chemo.
Everyone is different but you may find that he doesn't need you moving in with him during the chemo phase.
Maybe for a couple of weeks after surgery.
Two things - I was upset when scan after chemo to shrink tumour showed it wasn't smaller. But told that chemo causes scar tissue in tumor and that scan results don't always pick up which is dead stuff and which is active tumour.
It's very hard to predict what you will want to eat so you may want to wait and see.
I found sweet things ,( liquorice all sorts!! ) during chemo and had a yen for pork crackling after surgery and second chemo.
Counter intuitively crunchy stuff can go down more easily then soft spongy stuff.
Finally I found telling close ones very difficult; I didn't want to cope with their feelings when I was struggling with mine.
But my mother had a habit of making any problem.all.about her .

Thinking of you and your dear family, OP.

Thank you @SoftandQuiet !

My dad had a laparoscopy over a week ago now, where they took a few more biopsies from around his stomach and upper intestine. They also put in a stent where the tumour is so he can get more food down now (before even saliva was building up) - the original plan was to put in a feeding tube, so this is a much better option!

His main goal now is to calorie load and get his strength up before starting chemo. I've been able to cook some nutritious broths and creamy soups for him which has been nice to feel like I'm contributing to improving his health. I've been brewing lots of kombucha too, so that will hopefully help him until he's unable to drink it during chemo.

We're feeling pretty positive, although my dad has lost a LOT of weight and muscle since the original diagnosis, so I'm hoping we can either maintain his current weight or start putting on weight. It's a slow process, but he's getting there with his appetite. He absolutely hates the prescription drinks, even when he 'waters them down' with milk.

I've just spotted this response, sorry for missing it. Thanks for the really useful insights - I know my dad has struggled telling his friends and only one or two know. I think he just doesn't want people constantly getting in touch to see if he's OK, because he doesn't like being reminded. The friends he has told have been fantastic ❤

My brother has been a bit strange in some of his responses (e.g. telling my dad he's now worried about his own health if it was genetic, which I thought was a bit off!), but my brother is in his 20's and struggles with anxiety and other MH issues so I don't think my dad has taken that personally, more likely he gave that comment a bit of an eye roll. My brother has been supportive in other ways like taking my dad to appointments an fetching him shopping at least 😊

@SpanishFlea there are different fortified drinks .
Has he tried the juice based ones fortijuice ?
V..cold and through a straw ?
Are his powders that need to be made up?
Hospital Dieticians like the drinks because they are a complete package with calories,protein etc .But they are very processed and disgusting. And full of sugar.
Have a look.st ingredients listed
I would bet you could make your own with protein powders and fruit and full fat milk .Maybe supplement with vit and mineral tablets ?
There are people posting on line about making up liquid feeds for children who are tube feed .
I understand you might not want to go down this route.

https://rms.cornwall.nhs.uk/content/Homemade%20fortified%20drinks.pdf

https://www.royalberkshire.nhs.uk/media/extnqfje/homemade-fortified-milky-drinks_may24.pdf

Thanks for the links, the ones he has are 200ml tetrapak ones that are a bit like a thick milkshake. I'd be up for making some nice ones for him, definitely! My concern at the moment is making sure he's getting enough iron since he's vegetarian and eating a lot of dairy products at the moment which can block iron absorption. The prescription drinks have a lot of iron in, so I've been encouraging him to hold his nose and drink a couple a day at least!

Yes , they'll have the right balance

He's lucky to have you 🙂

Sorry he's struggling with them. Sounds like they might be the same ones I have.

What flavours have they given him and have they provided a selection of different flavours?

At one point they just gave me one single flavour for months on end and it was terrible. Especially as it was an awful flavour. Very dispiriting, you just end up not wanting to take them.

I think it helps if you have a selection you can rotate around and they're flavours you find more palatable (there are a few that I can't stand!). It made a big difference for me and I don't dread drinking them now.

Which pharmacy are they coming from? If the existing pharmacy can't accommodate a varied selection of his preferred flavours then I'd switch to another one - talk to them about their stocks and what selection of flavours they can provide for him with each prescription.

It can also help to clean your lips and to drink some chilled water afterwards to flush the taste out of your mouth so it doesn't feel like it's lingering after you drink it.

He's got a selection of banana, strawberry and chocolate (potentially also vanilla but I'm not sure!). He loathes the banana but tries to drink it anyway to use it up. He's found putting the chocolate flavoured one into a hot chocolate is much more paletable too.

@limetrees32 I passed the recipes above to him and he's going to give the banana and peanut butter milkshake a go 😁I found this powdered plant-based nutrition online which has almost the same iron levels as the prescription drinks in it : https://www.family.abbott/my-en/ensure/products/ensure-gold.html So I'm wondering if he adds that to the home made milkshakes whether it will be as good as the prescription ones.

Thanks again everyone for your lovely advice and support ❤I'll be seeing him again on Saturday 😊

Ah okay. There are other flavours, so could be worth asking to try some of the others to see if there are any he finds better than banana.

I just had another thought too - if he's really struggling there's a version called "Fortisip compact" which is only 125ml but the same consistency and nutritional content as the 200ml version. Could be worth discussing that with his medical team to see if they would change the prescription.

My dad found ice cream palatable (and easy to swallow) - could you get some organic calorie-dense vanilla ice cream and add nutritional powders to it (like you mentioned in your post above)? I wonder if you could freeze fortisips into ice lolly moulds, and whether they might be a bit more palatable if they were like frozen yoghurt?! My teenage son likes to experiment with the blender that we have (for himself!) and will whizz up frozen blueberries, ice cream or yoghurt, and protein powder for himself! Maybe the fortisips may also be more palatable if you add stuff to them (maybe hot chocolate powder, or natural flavouring essences)? My mum has to have laxative powders which she thinks are awful, but adds them to orange squash (which hides the taste a bit, i think)..

And don't forget fortijuice is slso available.
I found the forest fruits the most palatable.

@SpanishFlea Thinking of you and your father. It is a very difficult time for you. My DM was diagnosed with this at 70. She then had another unrelated cancer at 80. My DM lived for 16 years after being diagnosed with the oesophageal cancer. Unfortunately, she did end up having her stomach removed during the surgery as well as part of the oesophagus. Her life wasn’t always easy due to the difficulty getting enough calories and she did stay under the care of a dietician and remained on high calorie drinks for the rest of her life - she did eat normal foods too but mainly soft foods like soup, cottage pie, porridge etc. She did have a good quality of life for a long time.

My DM had these drinks prescribed to her. She tried many drinks but these were the ones that were most easily absorbed and she liked the taste as long as they were cold.
https://www.easymedshealth.com/products/peptamen-vanilla-4-x-200ml?variant=15427285418074&country=GB&currency=GBP&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic&gad_source=1&gad_campaignid=17424953915&gbraid=0AAAAADN-rCqua_f1Hk0aINt2KAbEPgThB&gclid=CjwKCAjwxITRBhBYEiwA6mZm7fQ1Kb2_3ngWEGQcaidxzcTJHVyj5OxrV9PgCO2DVLQOTHN0FfFRjxoC3-IQAvD_BwE

Some great suggestions, thanks everyone! I'll look into them. He's got a freezer full of clotted cream vanilla ice cream and has a scoop or two a day with a high calorie chocolate sauce I found (https://sweetfreedom.co.uk/collections/chocolate/products/choc-shot-for-hot-choc-drizzling-320g?variant=57740905283958) 😁 Before the stent he had this a lot as the cold helped to ease the pain of the tumour as well.

Your stories of hope are really lovely too - I've got my fingers crossed his laparoscopy results come back to show there's no cancer in the rest of his stomach/bowel 🙏Although trying not to think about that too much, mostly occupied with thoughts of how to load as many calories into him as poss.

Fortijuice seems really good too! Thanks @limetrees32