Need advice - lung cancer

[Honeymoonmummy]

Hi all, my stepfather has an asbestosis related form of lung cancer, mesothelioma. He was only diagnosed 4 weeks ago and given months to live after a biopsy which seemed to make him worse and caused him a lot of pain (they went in through his back while he was conscious) He's going downhill fast.

Anyway, I need some advice both generally as to what help is out there and 4 things specifically:

1. The doctor is messing around re a portable oxygen kit, it's already been delayed a week because the wrong person requested it and I really don't think he has much longer where he'll be able to go out,maybe a fortnight at most (he has one in the house) So where would I go to lease or buy one ASAP?

2 his non portable oxygen only currently works downstairs and he's currently trying to sleep upstairs but apparently can't have a second tank upstairs??

1. He is eating v little, he fancied some ice cream today, does anyone have suggestions re what he might eat?

1. He is really struggling to sleep cos of being unable to find a comfortable sleeping position, any suggestions?

[Furball]

So sorry your dad is suffering with this. I have no experience as such and don't quite know what I'm talking about but have you tried contacting Macmillan - It says on their website:-

If you want to talk to someone, you can call the Macmillan Support Line free on 0800 808 00 00.

They will be able to offer you really good advice and will help you in anyway they can.

and I know it's the last thing you are worried about, and maybe insensitive of me to mention and I apologise if it is - but does your dad know he might be able to claim compensation for mesothelioma. I know that is not important at this exact moment and the last thing on your minds but just in case you do want the info is here

[lessthanBeau]

yes call McMillan, my dB has cancer and our McMillan nurse gets everything sorted very quickly, much faster than docs.
sorry you're going through this

[lessthanBeau]

forgot to add, let have anything he wants to eat, some days my dB just has puddings, try to keep proteins up, get a prescription for fortijuice, if needed.
ask for a hospital bed with air mattress, might help with sleeping,have it downstairs if you can, we've just relocated dB into the dining room he finds it so much easier as he was having trouble with the stairs.

[Honeymoonmummy]

Thanks for your advice. I took him a mr whippy from an ice cream van and he wolfed half of it what kind of puddings would you try?

[whatisforteamum]

hi so sorry your step father is suffering like this.I would stock up on thick fruity yogs and tins of semolina and rice pud plus icecream.You can also buy those kids frube yoghurts and freeze them.Mum makes soups for Dad when he isnt eating much.Anything that takes little effort to eat but maybe tempting.Things that can be kept on standby.Milkshakes too can be a source of nutrition.Macmillan are v friendly and have great advice.

[Honeymoonmummy]

Thanks whatisfortea. I got him a warm cooked chicken from the supermarket yesterday and he ate more than he had all week!! Will keep trying different things, thanks for the advice. He now has portable oxygen from the district nurse.

[lessthanBeau]

just checking in to see how things are going, did you get the bed sorted, our district nurses are being brilliant don't hesitate to call them xxxx

[PacificDogwood]

Yy to getting McMillan involved.
He should be flagged up to them already - usually on diagnosis a referral gets made or should get made

Also look at Marie Curie is you require support overnight.

Oxygen is not easy to source privately - it is a dangerous gas and quite heavily regulated. I am sorry you have been messed about a bit. I agree that the McMillan nurse should be able to help.
Or contact his consultant's secretary and be polite but insistent that you require this asap.

Is any kind of palliative care team involved in his care? Pain and sleeping is something that he should get adequate help with. Has his GP been out to see him wrt pain relief? Is he honest about pain/sleep when asked or is he one of life's stoics who will deny there is a problem to the HCP because 'he does not want to be a bother' (seen a few of those ).

Eating: yes, totally indulge his every whim. Whatever he eats, make sure its laden with calories. So, cream with everything, cheese on top of everything, full fat milk in every cup of tea. Ice cream, custard, scrambled egg with cream, mashed potatoes with cream and cheese melted in etc etc - you get the picture.

I hope you get things sorted quickly and you have as good quality of time together for what time you have.

[marilynmonroe]

I just want to say I'm so deeply sorry to hear about your dad. My mum passed away last week from mesothiloma. She was diagnosed 18 months ago and went into a hospice at the beginning of January. She was given oxygen in December and got it from her consultant but she had to be tested first to see how her breathing was. We had her funeral yesterday and I'm so glad she us at peace now. It's such a horrendous disease and I really really hope your dad gets the care he needs. Keep pushing for what you think your dad needs. If you don't ask you won't get.

As for eating my mum was always hungry until near the end. She had enlarged glands in her throat so in the end she found it difficult to swallow so she had lots of soup and puréed food. Let me know if you want to know anything else. You can message me too as I'm more than happy to support you. Thinking of you. X

[hellhasnofurylikeahungrywoman]

Has he got a hospital bed with a pressure relieving mattress at home?

Food wise, just whatever he fancies but thinks like jelly, icecream etc are often wanted.

I hope he is comfortable and you are being supported.