So much to deal with

FormerMember
FormerMember
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Hi all,

My partner was diagnosed with Stage 4 lung cancer (which has spread to pancreas and adrenal glands) a couple of weeks back. We went for his CT yesterday ahead of starting radiotherapy at the end of the month. He has been told it is incurable so we know this is a holding action at best. Suddenly I have a dying man on my hands and it feels like it came out of nowhere. Seriously feels like 3 months ago he was out on his bike every day, doing chores, swimming and looking forward to golfing again. Now he just lays on the sofa watching tv and dozing in and out at odd hours.

Suddenly he can't swallow well and he had his first uncontrollable coughing fit last night due to food causing him irritation. It scared the cr*p out of my son (he's in his mid 20s) and I had to just deal with everything, clean-up and now readjusting foods so he can actually eat.

I am already feeling like I am having to be strong for everyone else because the kids are devastated. I am having to be both emotionally and physically strong and I can only see it getting worse down the line.

How do carers cope with that? I have a good friend I can talk to but no close family. The kids are being great, helping run him around (because he already feels unable to drive further than the local shop) but I have no idea how to even begin to talk to them about dealing with Dad's inevitable death or how I am going to manage when he gets really sick, or if he needs to go into some kind of managed care. Right now (and I hope to gods it changes) partner wouldn't dream of having helpers come into the home as he is very much of the generation who stiff upper-lip everything (he will be 70 in a few days) and I haven't yet even found a way to talk to him about what will happen ahead. He doesn't want to and I don't know how much his lung nurse or doctor will even be willing or able to tell me.

As I said, it is just overwhelming; too much too soon. Sorry this post is rambling but I am struggling to get any clarity or know where to turn. Thanks for listening (reading?!)

  • Hi  and welcome to the online community

    A cancer diagnosis has a huge effect on the whole family so it's perfectly normal that you're feeling overwhelmed at the moment.

    Most people find that chatting to others in a similar situation as themselves to be really helpful so can I point out a few groups for you to join here.

    If you'd like to be able to ask questions and share experiences about your partner's lung cancer then the lung cancer group would be a good one to join. I think you'd also benefit from joining the carers group and the supporting someone with incurable cancer group. Both of those are safe and supportive places to shares your worries and get support and the latter is also somewhere where you can discuss practical issues such as palliative care and end of life.

    To join any or all of these groups just click on the links I've created and then choose 'join this group' on the pages that open. You can then post a question or introduce yourself after selecting 'start a discussion' and respond to existing posts by clicking on 'reply'. 

    Whilst looking after your partner and children it's also important to take care of yourself and you might find this information from Macmillan helpful.

    Sending a supportive ((hug))

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  • FormerMember
    FormerMember in reply to latchbrook

    Thank you for all the help. Still finding my way around the forum but off to look into those groups :)

  • The community can seem a little bit confusing at first  so if you need any help just reply to this post.

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  • Hello , a second welcome to the online community glad to see you have joined the carers group.

    I’m a patient who in 2015 had an incurable diagnosis for metastatic melanoma. We all react differently and my diagnosis spurred me on to make sure me and my husband had wills and power of attorney done. Often I thought just about me and at this confusing time and when we both went to see the consultant as a patient I was hearing all the negative things and my husband was hearing all the positive things, so in hindsight it was good to talk together after an appointment to make sense of everything. My husband realised there were things he wanted to ask the onc that I wasn’t sure I was ready to have discussed, we agreed that I could leave the onc appointment and he could ask those questions when I wasn’t there. 

    Talking between us and having that first cry together was such an important stage for us, he was being brave in front of me and it was beginning to make me feel like he didn’t care, even though I knew that wouldn’t be the case. I read the following link talking about cancer for me as a patient and for him as a carer and decided we had to have a talk, a little bit like when you get together as a couple having had a long talk together, I remember a friends episode when everyone knowingly nodded to having a talk.

    https://www.macmillan.org.uk/information-and-support/coping/talking-about-cancer

    My kids were late twenties and not living at home but there is a section on talking to kids in that section to, it sounds like yours might be older to. I was on a targeted treatment that on average lasted only 9 months but was very lucky that a new treatment became available on the nhs a few months before my first treatment stopped working, it had a low percentage rate of working but I was on the lucky side and although I’m still on treatment and I am no measurable disease and hope to come off treatment in March. I don’t know what type of lung cancer your husband has but some types have the same drug that I am on, I do not want to give false hope but it maybe that incurable may be treatable for longer than you first imagine, so it is important to talk together and with your team about options including perhaps clinical trials. 

    I hope the link is of use, I see my friend latchbrook has signposted you to the supporting someone group, you may also want to join the lung cancer group or at least read through some of the posts in there. 

    best wishes

    Take care KT