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Caring for advanced lung cancer patient

Elizabeth Ann

Good morning all.

I was hoping I might be able to get some advice or guidance with regards to helping with my Father. The trouble when it comes to helping someone with the condition, you don't know what or who can help.

Firstly, my Father has the aggressive single cell cancer of the lung. He has been receiving both chemotherapy and radiotherapy, but now on a break from them. He is still mobile and mind is still functioning well etc. I understand that fatigue both in body and mind can strike and it is common amongst cancer patients.

My problem is this; the fatigue has reached what I feel is chronic. He is essentially only leaving his room for his meals, and I'm struggling to get him to eat normally. His appetite has waned greatly, and although I push him he has no interest most of the time.

The tiredness is debilitating, and what's more is I know he is as worried as I am. I feel he has no qualms of life at all. I know he mentioned feeling fatigued at his last doctors appointment, but as men an do sometimes, I don't think he stressed how bad it as become. He may have played it down a bit.

So I googled... It seems that there are some medications out there than can help with the fatigue, once it is defined where it's coming from. Is it the treatments, is it the tumour itself etc. But I don't know if they will be given to him. I suppose I'm trying to find out if it's worth my while dragging him off to hospital, as we do live some distance away from now the one he has been attending. The last thing I want is to put him through long waits in hospital only to be told it's a normal thing and turned away.

It's hard to know what to do, and when to do it when you've no previous experience with this. Any experience or guidance would be greatly appreciated

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smjm

Can't give you any specific advice, but I'd speak to your Dad's GP in the first instance. He might check your Dad's bloods and see if there are any obvious problems beyond what might be expected. You can also phone the hospital that your Dad's attending, and ask for their advice; perhaps after any obvious problems have been discounted by the GP.

You've probably seen this site already, but here's a link anyway: http://www.lungcanceralliance.org/what-if-i-am-diagnosed/side-effect-management/tiredness-fatigue.html

It's a really tough time for you and your Dad, so I wish you both the best of luck.

[Deleted User]

You need to see his GP. Always attend with him, so you are up to speed on everything. He may resist at first, but persist. Good Luck.

Wellywoo

Hi OP I cared for a relative with a different cancer to your Dad so I can't comment on the part but there are similarities in the effects of all cancers; losing appetite, fatigue etc. so I'll just give you my experience if that's ok.

Are you engaged with your local hospice? I don't know what I would have done without the hospice at home team. In my experience the oncology nurses that visited were far more helpful than my relatives GP. They visited more frequently to assess her and were able to make accurate suggestions for medication especially when the consultants SHO's or the GP couldn't/ wouldn't visit (unless deemed extremely urgent by the nurses).

For your own peace of mind, I would ask your Dads GP to refer him to your local hospice at home team. Your GP will still be involved it just means you will have regular help. I was a sole carer and believe me you need support too. The Irish cancer society night nursing facility is organised through your hospice at home team too and it is an absolute godsend. Try to stop googling symptoms and medications, hard I know but it's not good for you.

I feel for you, just writing this is taking me back to last year I wouldn't wish it on my worst enemy. Not many people understand unless they've been there. I will say though, it's more difficult to look after someone if you're not looking after yourself. Take care of yourself, it's a necessity, it is not being selfish xx

smjm

On a side note, I'd keep a diary of everything your Dad eats and drinks. (In fact, presuming you're living with your Dad, you might want to keep a diary of everything going on with him if you can: eating, drinking, toilet frequency, bowel movements, sleep patterns etc.; do it discretely if it seems awkward or intrusive, but it can be useful).

Whatever about the food, make sure he has plenty of fluids. Ask his GP (or Public Health Nurse) if they can refer you to a dietician. They'll probably call to the house, so no travelling. It might be that your Dad isn't great with more solid food at the moment, but there's lots of special supplements in the form of drinks/puddings/yoghurts that contain all the vitamins etc. that your Dad needs to keep his strength up. The dietician or Public Health Nurse will advise you on these.

Also, keep an eye on your Dad's swallowing. If he seems to have any issues, such as coughing or choking when eating certain types of food, then avoid those foods and ask for a referral to a Speech and Language Therapist. They can check your Dad's swallowing action to see if there are any problems, e.g. sometimes liquids might need a thickening agent added to it to aid swallowing. Again, they'll probably call to the house.

None of this is specifically related to lung cancer; just general advice based on my own experience of caring for my father through various illnesses.

mickmac76

Public health nurse and dietician should be involved and possibly the Speech and language therapist if there are potential problems with swallowing. A dietician can perscribe special foods available from pharmacies that are very high in calories if they are neeeded.

Elizabeth Ann

Thank you so much for your replies, I do appreciate them. I apologize I haven't been back to reply, it's been very tough. I'm expecting myself, and it's come with a host of health issues of its own.

I have been struggling to get anyone to care, or even answer a phone. I've rang hospital, his own GP etc. It's all ring-outs or voicemails. It's taken several days for his hospital to get back to me, and the voicemail they left for me was very pass-the-book.

I believe my father has gone beyond the point of my care at home. His eating is minimal and he has dropped half a stone in a week. When asked if he's having troubles swallowing; he hasn't said that to me me as such, but I do know he is suffering with dry mouth and you can hear it as he is speaking. I have him on mouth spray and water / juices to aid that.

He has said to me now that even making his way to the bathroom he is weak and he barely has the energy for it. It's getting very bad.

I'm so very upset, but I'm not showing it to him. He is reluctant to make a 100k trip to his own hospital, favouring my local hospital that has no information about his treatments, tests or history of any kind. He has been avoiding the hospital up to this point, which had been very distressing, because I know I'm at the limits of my capabilities at home. He's now undernourished and weak, I feel so damn useless. I'll push for him to come with me to the local hospital at least.

[Deleted User]

Ring your local Public Health Nurse. You cannot carry this burden alone. Also contact your local Hospice and get them on board. They can be a great help. Thoughts and prayers with you. x x

smjm

As Maryanne84 said, get hold of your Public Health or Hospice Nurse as soon as possible. If you can't get hold of either, then take your Dad to the local hospital yourself or dial 999 and get an ambulance. Don't be afraid to phone an ambulance at any time, day or night -- that's what they and hospitals are there for. No one will ever think you're over-reacting; trust me, you're not! Your local hospital will take care of your Dad's immediate needs and also get in contact with the other hospital for his notes.

I was my Dad's sole-carer for years. It can easily overwhelm you, and you can easily just hope that things will get better on their own. We never want to be a bother! But you clearly need help and need it now. If you can't get anyone to come to you today, and you don't want to drive your Dad to the hospital, please just phone the ambulance.

Ghekko

Are palliative care involved? If not request this asap. Mil had palliative care involved shortly after her lung cancer diagnosis but it wasn't because she was very bad - it was to monitor her needs. Her nurse was great and spent time chatting with her, listening and organising medication to suit her ailments. She was there to the end and so had built up a great trust with mil. I really feel for you. You need this help - demand it tomorrow!

0lddog

Deleted User wrote: »

Ring your local Public Health Nurse. You cannot carry this burden alone. Also contact your local Hospice and get them on board. They can be a great help. Thoughts and prayers with you. x x

^^^^^^^^

This, Exactly This !

qo2cj1dsne8y4k

What you've got to remember is, he'd been through two very aggressive forms of treatment, sleeping is the body's way of healing itself.
Also, depending on where about the Tumor is on his lungs could affect him being able to swallow.

What I did for my dad was spike his foods with xtra calories. For example, full fat milk, add powered skimmed milk to make it even fuller fat, and use the "fat milk" to make semolina, rice puddings, porridge. You can get fat milkshakes too, ensure or enshake, make it up with icecream. Foods that will go down easily. Porridge with honey, made with fat milk, topped with fruit/raisins.
There's lots of ways of sneaking extra cals into food so even if they're only eating a little bit they're getting more into them.

Ghekko

Just a theory which may be way off but I wonder how his breathing is? He may not be breathing to full capacity if it hurts or his capacity may be lessened by the cancer. This may be causing less oxygen and thus less energy?? My mum had a different lung disease and complained of fatigue for a while before she was diagnosed, by which time she was working on part of one lung (the rest non functioning).

Graces7

Strong prayers from here.. Blessings and peace...