Adenocarcinoma and pleural effusion a... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Adenocarcinoma and pleural effusion and quality of life

Keycode profile image

Hi, my dad is 76 and was only diagnosed in May, he had been complaining of pains in his shoulder for a few months and then started struggling with his breathing which finally prompted him to go to the GP. I think my dad has known for while that he may have something serious but was full time carer for my mum who sadly passed away in January.

My dad spent 3 weeks in hospital where they put a chest drain in and did pleuradysis procedure.

They also discovered dad has tumours in his bowel/colon.

He has been told that he is too frail for treatment so now looking at quality of life and making him comfortable but he seems to have given up.

He has lost so much weight but is not interested in eating the nuticrem prescribed, he struggles to eat much at all and seems to be sleeping in the day and not at night. He gets really short tempered with everyone too which i find really hard because we all just trying to help him.

We have so far had very little support from the community nursing team and feel like i'm constantly ringing the specialist lung cancer nurse at the hospital for advice.

Just wondering if he is showing signs that he is coming to the end of life, or whether this is all normal after receiving a terminal diagnosis?

11 Replies

Dear Keycode

So sorry to hear about your Dad and how difficult this must be for you all. Your family has been through a lot and it is so important that you all have the support you need.

It is very normal for mood swings, irritability and anger, especially if there is no option of treatment, equally very challenging for the family. You may find that each day is different and no matter what you try to do to help it may not be enough.

Macmillan support provide some useful information on this found on this link:

macmillan.org.uk/cancer-inf...

It is not uncommon for night to become day and sometimes this can be driven by fear of being alone and what might happen in their health. In regards to eating and appetite, it is sometimes helpful offering small and frequent snacks, meals that your Dad would like or manage.

Cancer Research UK have some information on diet advice: cancerresearchuk.org/about-...

It may be advisable to contact your Dads GP to ask for referral to the Macmillan district nurses to provide support or at least they can assess your Dad to see if there is anything that can do to make his life more comfortable.

It can be overwhelming dealing with everything all at once, to the point it is difficult to think clearly what would help.

Try to think what kind of support would be of help for both you and your Dad. He may refuse nursing support initially, but at least if he is on their list of patients it will be easier to recall them in if required or when your Dad will accept them.

You may wish to contact the helpline at the Marie Curie Nurses Support on 0800 090 2309

Their website can provide support for yourself and the family in caring for someone who is at home and the challenges that can present:

mariecurie.org.uk/help/nurs...

You may or may not wish to read on what to expect at end of life, this link provides information on this from Macmillan support:

macmillan.org.uk/cancer-inf...

If you wish to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

Thank you for your prompt reply, I will have a look at the links.

Definitely finding each day there is a new problem. I then take steps to help with whatever it is but then it will be replaced by a different problem.

He gets quite stressed when he thinks people aren't helping him but then when I manage to get the advice or nurses/doctors speak to him he doesn't want to know.

Its very frustrating!

RoyCastleHelpline profile image
RoyCastleHelplinePartner in reply to Keycode

Dear Keycode

It is such a difficult and frustrating time for you all and you are perhaps the safety person he can express his emotions too. It does pass and your Dad may settle down into a quiet time, it is almost like the stages of grief: denial, anger, bargaining, depression and acceptance.

However, it is just as important that you take care of yourself and have your own support.

Hopefully the links will help as this is very frequently experienced by the family and carers. Everyone suffers in cancer, all be it in different ways.

So sorry you are having to go through this with your Dad and so soon after losing your Mum. You must be feeling emotionally exhausted from attending to your Mum and now your Dad. Please ensure you have some time out for yourself.

Take care

The Roy Castle Support Team

Hello there,

I’m so sorry that you are going through this so soon after your mums struggle with MSA.

We can’t do much to help other than be thinking of you and hope you can make some good memories with your dad whilst you can.

Take care, Ian

Keycode profile image
Keycode in reply to Yanno

Hi Ian, thank you for your lovely message, it means a lot.

Hope you are well and managing during these last few months.

Kathryn x

I know just what you are going through and how hard it is. My husband has adenocarcinoma with pleural effusion and suffers with an awful cough and breathlessness. He is on oxygen at home, very weak . Emotionally this is so hard to cope with. I too keep thinking is this end of life. However, all the emotions your dad is having are quite normal. My husband is going through every emotion under the sun. We are taking one day at a time, trying to make things comfortable. It places a huge strain on the carer so it is natural that you are going to have hard days. My thoughts are with you.

Thank you for your message and sorry you to are having to watch your loved one struggle.

When was your husband diagnosed? Despite my dad's breathlessness they have never put him on oxygen i'm not sure why. Has your husband managed to have any treatment at all?

I had to ring the gp yesterday because my dad was struggling so much with his breathing but they just said he can start taking an increased dose of oramorph. I just don't think the oramorph is doing anything though.

Bettyblue54 profile image
Bettyblue54 in reply to Keycode

My husband was diagnosed with lung cancer at the end of April. He has had 3 admissions to hospital since as he couldn't breathe. He was discharged home with oxygen and has been on it 24/7 since. Oramorph did not help at all. I would certainly ask if you could have a cylinder at home to help when your dad is breathless because it is such a distressing symptom and would give you a sense of relief to know you can use it if necessary.

Sorry to read your post and about your dad's (and yours) situation. My dad had bowel cancer (twice) in his late 50s and had two resections - the latter a colostomy but returned to work until he was 62 when he developed angina. In 2016 they found another bowel cancer 27 years after his first episodes. The way he handled it (he didn't) was completely different from our earlier experiences and probably due to being my mum's carer who has alzheimers as he cares for her at home. He was the angriest grumpiest I've ever seen him - like Victor Meldrew on steroids- nothing was good enough, he was short tempered with nurses and family. I think some of it was some sort of guilt as he'd promised mum that as long as he lives she'll not be put into care and I think his anger was that he was back in hospital so took it out on everyone. He kept coming out of hospital too soon then being readmitted with one thing after another.... as I've been involved in cancer research in the last 5-6 years I had lots of questions and asked him to ask the medics whilst in hospital but his response was 'I'm not interested luv - I just want to get home to your mum'. I think his role as parent must have felt like he was being usurped as my elder sister had moved back in with my mum.... I can't even begin to imagine that your dad, still grieving for your mum feels - and trying to come to terms alone with his diagnosis. My diagnosis was in Jan 2011 and I can only say that some of the signs you describe are natural reactions to a cancer diagnosis particularly if unfamiliar with how treatments/outlook have changed in recent years. Many patients who receive a terminal diagnosis are also 'treatable' and live years post diagnosis but the word 'terminal' can create all manner of feelings including fear that you'll die quickly and leave behind the world without completing all the things you'd have liked, said the things you might have wished to, as well as facing your own mortality. Try not to worry about calling the lung nurse for advice - that's their job. Part of the problem of our parents' generation is they think they're being a nuisance or that others may be more deserving - but that's what the NHS is there for. You could also contact his GP and ask if there is a support service for you as relatives as well as him - especially if he has a terminal diagnosis. Our area for example has a hospice at home service (as we have no hospices or cancer support centres like Maggie's in our area). My dad did manage to drink the fortisip drinks that helped him recover some appetite - he's always been quite skeletal but the last bout of cancer made him look so emaciated - he was 90 in February and is back to his former self even if more tired but still battling on with his life's purpose to look after mum for the rest of his days. If your dad has been your mum's main carer, he may also feel that his 'role and purpose' in life has disappeared and may well be depressed too. I do hope you can get some support for yours soon.... especially after losing your mum earlier in the year. thinking of you at such a difficult time. This link may help and Macmillan also have guides that you can download about how to deal with somebody who has cancer.... roycastle.org/about-lung-ca...

Thank you for your reply. Your dad sounds lovely the way in which he puts your mum's care needs over his own. Sounds like you have been through a lot.

Think my dad is definitely struggling with his diagnosis and the speed in which it seems to have progressed. Its hard for us all but especially him. Within the space of a couple of months he has gone from being completely self sufficient to now having to have carers and having to be downstairs because he no longer has the strength to go upstairs. The GP wants him to fill out a respect form but dad just doesn't want anything to do with it. I understand it must be hard to think about end of life but important to know what he wants. It is all so hard and not nice having to have those conversations.

Thank you for your support x

Sorry for delayed reply - you're right - they amaze me how resilient they are despite losing their daughter (my younger sister) aged 40 almost 19 years ago then her oldest(my niece, their granddaughter) last year at 33 from a catastrophic bleed on her brain.....

My parents had their wills written at 40 and prepaid their funerals but imagine the wills won't have been updated to take these into account.

When we wanted Power of Attorney for mum some years ago, the way we persuaded her was to do one for dad at the same time and say it was an age thing (rather than her health) and stress if things aren't done properly, their wishes may not be carried out and the estate may be taxed. Now my mum is much worse, I'm glad we managed it even if she wasn't willing to put her savings into Trust as we have no illusions about how expensive care for her would be.

Your dad's behaviour sounds classic reaction of anger and grief for the life he thought he might have had as well as maybe feeling a burden on others (which I know my dad always does)....and still grief for your mum's death as it was so recent. You could always talk to your dad about his wishes rather than it being the GP/official way.

Losing my sister who died with no will and sorting out her estate as her two daughters were 12 and 15 was really difficult. My niece had no will either (not that she had any assets) but for the sake of her young son, it was hard organising the funeral not knowing what she might have wanted...

However I know it isn't easy, my partner has been quite worried during the pandemic and asked if I have written my wishes down, apart from having my will written and Power of attorney at a solicitors done in the 2 weeks between being told I needed surgery and actually having it, I haven't gone any further. :(

Good luck - hope it gets a bit easier for you both as time goes on.

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