How to help a relative with metastatic cancer

ripplyuk · 24 March 2016 at 11:30PM

My MIL has been diagnosed with thyroid cancer that has spread into her lung (I say MIL but my partner and I aren't married, nor do we live together full time. Bit unusual, but it's worked for us for 13 years). This is after a barrage of tests, scans, biopsies and a lot of confusion over the diagnosis. We haven't been told what type of thyroid cancer it is. She is 84.

The doctors want to remove the tumour in her lung, a Lobectomy, which is a major surgery. She keeps asking me if she should have this, what would I do if it was me, what will it be like afterwards, and how bad it will be etc. I'm unsure of what to say. From what I've read, it's brutal, especially for someone that age, but I haven't said much except that it's her decision and it is a big surgery.

The other problem is that her house is in a terrible condition. It's freezing cold due to no proper central heating system and no insulation. There's damp, mould, ceilings and plaster falling down, one single toilet (that doesn't flush so she has to pour buckets of water down it), countless leaks in the roof everywhere, and the place is filthy. In short, it doesn't seem like a good place for someone to recover from such a major surgery. None of this is due to poverty, she just won't spend money on it. She thinks it's fine the way it is. She lights a fire in one room but already complains about the soot and dust. It wouldn't be good for her breathing after the surgery.

Could anyone help with any advice about what I should I say or do to help her? I don't want to say the wrong thing but I know she's frightened and I want to support her as best I can. She has lots of children but hasn't been getting much support from them, so she keeps asking me for advice and to go to appointments with her.

whitewing · 24 March 2016 at 11:45PM

Going to appointments with her will be a great support.

My philosophy would be, as a general rule, to follow the doctors' guidelines. Most people would be able to say to a trusted friend if they didn't think the advice was right, but would struggle more with being given a choice, so it may be the communication that she struggles with. You could ask her if she would prefer to trust the doctor and maybe explain that they are a lot more likely to give patients a choice whereas in the olden days they may have told you what they would do.

I wonder if your partner could mobilise the rest of the family to do up the place? Maybe don't get involved with that. I think it can be very easy to take on way to much in these circumstances.

mellymoo74 · 24 March 2016 at 11:46PM

Can your partner speak to her about the house?
All you can do is go with her, take note of what the docs say and remind her.

Remember to take care of yourself as well

ripplyuk · 25 March 2016 at 12:11AM

Thank you, I do need to take care of myself too, otherwise I'll be of no use to her. I also have mental health problems including anxiety, so I know I shouldn't let myself get too stressed, but it seems like she has no other support.

My partner lives there for half the week, along with two other brothers. It's a really huge house and they don't really speak or spend any time together. She seems quite lonely so I try to spend time with her when I can. The property actually belongs to my partner and his 5 siblings. I've suggested to him that they fix up the place for her, but I've realised that it's never going to happen, which frustrates me, but I have to accept it. They keep doing patch repairs that only last a short time.

She has said that she's happy to go with whatever the doctors say but the doctors don't seem to give her any options. They just tell her what they're going to do. They ask her if she has any questions but she won't say anything, despite me encouraging her to. Then later, after the appointment, she asks me a ton of questions which I don't know how to answer.

mellymoo74 · 25 March 2016 at 12:38AM

Take a note of the questions and give them to the doctor at her next appointment
She will be overwhelmed and they will be going out of her head when she's there.

I know what I'm talking about when I say take care of yourself my MIL died April last year after a 2 year battle and I worked full time, cared for her and my OH I have had a breakdown so make sure you take time away.

pigpen · 25 March 2016 at 1:01AM

at that age they would not be risking surgery if they thought it wouldnt be of benefit to her.. the dr's must be confident it can buy her time.

I'd do with her and speak to the dr's, see if your interpretation is different.. take her son too.. so you both have first hand info to discuss.

Have they checked out the new boiler schemes?? It may be possible they can get some decent heating in for very little outlay?

TBH.. if the house was that bad I'd be looking at getting her rehoused somewhere suitable.. smaller, warmer and no doubt cleaner! (I can only imagine what it is like and it doesn't look pretty!) She must have at least a couple of clean warm rooms.. poor woman..

getmore4less · 25 March 2016 at 11:37AM

GO to an appointment preferably along with an interested blood family member.

Prognosis is key, no point having 1/2 a lung removed to be incapacitated for months if it will only add a few months anyway.
then there are all the other therapies that will be needed not all are without their complications.
Someone needs to get on top of this part of the situation understand where this is going and what the options are.

House well that seems to be a disaster looks like the 6 of them have been pretty negligent in letting things get this bad.

The best thing would potentially be sell up and have her move in with family or a decent place to see out her time.

Does she want to move?
Has anyone asked what she wants to happen about her living conditions?

ripplyuk · 25 March 2016 at 12:02PM

My partner and I have been going to the appointments with her but I'm reluctant to just ask the doctor straight out if this is more about controlling the cancer, or completely curing it (which is what my MIL believes). She seems very naive about cancer in general and I'd feel like I'm forcing horrible truths on to her if the doctor responds with bad news. But I also feel bad saying nothing because it seems like she won't be making an informed decision.

She has an appointment with the lung surgeon next week to sort out her surgery date. We'll both go with her it but seems there's no time left for any of us to find out much about the pros/cons of it. We have talked to her about giving family members permission to ring her consultant and ask questions. She said yes, but has never actually done so.

I agree they have all been totally negligent with the house. I don't really understand why as it not to do with money, but it's unlikely to ever change. We did suggest she moves to a small bungalow or flat and at first she was very keen. I'd even helped her pick out a nice ground floor one-bed flat, but then she totally went off the idea and says she'll never move. I don't think she understands the after effects this surgery will have.

missbiggles1 · 25 March 2016 at 12:12PM

ripplyuk wrote: »

My partner and I have been going to the appointments with her but I'm reluctant to just ask the doctor straight out if this is more about controlling the cancer, or completely curing it (which is what my MIL believes). She seems very naive about cancer in general and I'd feel like I'm forcing horrible truths on to her if the doctor responds with bad news. But I also feel bad saying nothing because it seems like she won't be making an informed decision.

She has an appointment with the lung surgeon next week to sort out her surgery date. We'll both go with her it but seems there's no time left for any of us to find out much about the pros/cons of it. We have talked to her about giving family members permission to ring her consultant and ask questions. She said yes, but has never actually done so.

I agree they have all been totally negligent with the house. I don't really understand why as it not to do with money, but it's unlikely to ever change. We did suggest she moves to a small bungalow or flat and at first she was very keen. I'd even helped her pick out a nice ground floor one-bed flat, but then she totally went off the idea and says she'll never move. I don't think she understands the after effects this surgery will have.

I don't think you can ever really talk about curing cancer although, at her age, it might mean that she dies of something else. Unfortunately, that "something else" might be a result of having major surgery.

Has she had any contact with a Macmillan nurse who may be able to explain things to her more simply, free from medical jargon.

belfastgirl23 · 25 March 2016 at 12:21PM

I think there is something about this kind of diagnosis that means that people can only absorb a little bit at a time. And they need a bit of time to start coming to terms with it and really thinking it through for themselves. When she's asking you what she should do, it's really her trying to work it through for herself. As she needs/can take in information she'll ask for it - and my experience is that doctors are trained not to give the information until it's explicitly asked for by the patient themselves. Offering an opinion on what she should do is not easy, reading between the lines you're concerned about whether she will be putting herself through a lot for very little benefit. But as the others say, if this option is being suggested by doctors then they must think that she could benefit from it.

You're in a difficult position here, especially if she has no daughters and only sons - sometimes men are not as good at letting someone talk. And if you can see things that need done that might make her feel more comfortable, eg with the house and aren't being done that would be very frustrating.

How are her sons reacting to this overall? If you're lucky there might be one who gets a kind of 'wanting to fix things' reaction and they might be the one to encourage to think about the house.

Are there any specialist cancer charities in your area? If so you also might be able to ask for some help and support from them, for you and for her. There might also be information and support on how to talk to people after a diagnosis like this - not that you don't know how to do this already, but often it can help you to learn from other people's experiences. Also if there's someone available to come to the house they might well be the people to help the family think through practical issues to do with the state of the house etc.

I think the scariest thing of all is that this is something you can't really take any control over. You can offer support and be a friend. But you can't change either the diagnosis or how anyone is reacting to it. And that's something you might need to keep reminding yourself of. Because feeling powerless and yet like you have a responsibility to deliver something is one of the most bruising things for your mental health.

You sound like a lovely DIL though, she's lucky to have you!

ripplyuk · 25 March 2016 at 12:47PM

Thank you belfastgirl23, that's very kind. You're right about how hard it is feeling powerless but also having a responsibility. It becomes so upsetting at times that I've just had to sit and cry, feeling helpless.

She does have one daughter (with slight learning difficulties)but has no support from her at all. Her sons have not felt motivated to fix the house for her and it's overwhelming when you see the amount of work that needs done. My partner keeps patching up parts of the roof with bitumen and sheets of Perspex, or whatever he can find, which doesn't last. They're wealthy enough to completely renovate the entire house but choose not to.

I asked her if she'd like to speak to a Macmillan nurse but she said no. I'm hoping she'll change her mind sometime as I'm sure they'd be able to explain everything to her in a better way than I can. I'm also trying to think of other small, or practical things I could do that might make her feel better.

How to help a relative with metastatic cancer

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