Struggling with husband's cancer diagnosis after years of unequal parenting

[aponyatblackbirdcottage]

I met DH in 2018; we became parents at the very end of 2020 and got married in 2022; our DD was born a year later. So we’re now over five and a half years into having children: DS is six in December and DD was 3 last month.

In that time DH has not really been very hands on. He’s married to his job really. He doesn’t do their baths and stories or tidy up while I do, he just sits there while I sort the children then the house. He doesn’t get up with them at night if they wake or in the morning if they wake early. Even if he does do something it’s been instigated and sorted by me and he just doesn’t seem to think he has to do anything. So for instance he used to take ds to his swimming lesson on a Saturday morning. I’d get DS’s swimming stuff ready, he just had to take him. Then he’d say something like ‘oh, you didn’t pack DS’s goggles’ - it just didn’t occur to him that he could have packed his goggles.

I am sure I wasn’t blameless. I was working three days a week after maternity leave with dd and became increasingly resentful. It was very hard having both children home on my days off and I felt very alone. DH never took them to the park for a couple of hours. Sometimes he’d take one (usually the older one) and make out that was a favour.

Anyway, I did seriously consider ending the marriage but money was a big issue and I didn’t want to disrupt the children or be a part time mum. I also kept thinking if I could get through until both children were at school I could have a couple of days a week for me and they’d be a bit older and more independent and things would be better generally.

DH then started complaining of pain this year and I didn’t pay much attention at first but he does have cancer. We’re waiting on biopsy results.

He is genuinely in huge amounts of pain and I feel awful for him. Despite all I’ve said above I do care about him as the father to my children and someone I said sacred vows too and meant, but if I’m being really honest I am finding it hard to feel any sense of impending personal loss or grief. Which does make me feel the marriage was maybe not in a good place.

So now … DH can’t walk far. He is only able to sit on a specially adapted chair, which is in the main living area of the house. (Please don’t suggest we move it; we can’t.) He is insisting on working throughout, and holds teams meetings on the chair with the children gambolling about because it’s school holidays. Obviously this isn’t practical at all so I’m having to have them out all the time. I am exhausted as a result, and so so fed up.

I know this is a terrible thing to say but I’m so worried about life looking like this for the foreseeable. DH cured would be one thing but in all honesty this does not look likely. DH dying is awful and I don’t want to wish this on us. But this half life, where our home is no longer a sanctuary but a place or stress and anxiety and an office as well is just a nightmare. It really affects the children having DH there but ignoring them and just frowning at his laptop, which affects behaviour.

It will probably drag on for years like this and as it does I’m losing my children’s childhoods and my mind! I can’t just leave of course. I don’t know what to do.

Are his parents refusing to help at all with their very ill son? That’s fairly shocking.

It sounds look you've been dealt the crappiest of hands, here OP. He's not been a great father/partner and now you're the one facing a life without him and having to care for him during his illness.

I'm going to be blunt (my Dad died of cancer 3 years ago) that if he's in a lot of pain, it's not going to be a long road. And it sounds like your DH is already hitting this point. You have to be incredibly pro-active with the palliative care teams to get answers/find out what's happening, and I spent literally hours on the phone chasing answers for Dad. Don't be afraid to hound for what's happening with him.

Lastly, don't set yourself on fire to keep him warm. You are going to be the one negotiating children/life through this and to do that, you have to look after yourself. It's a long hard journey for everyone.

Seems like a lot of people on here don’t actually know what caring for someone with cancer is actually like. Even when the relationship with the person is good beforehand, it’s absolutely not uncommon to wish it was all over. It’s much, much harder when you’re married to a selfish arse and he absolutely is one. Cancer doesn’t mean you automatically become a saint, whether you’re the patient or the carer. None of it makes the carer a bad person for feeling they can’t bear it. No solutions here @aponyatblackbirdcottage , just sympathy.

My dad of cancer and had secondary bone cancer.
No, it doesn’t mean you automatically become a saint, but it does mean that you need care and some level of understanding.
This man can’t have long to live if he is in that much pain.

OP, I am wondering if the fact that you had your son during lockdown impacted anything going forward? I know that that sounds strange, but it was such an odd time and I think that it both put strain on existing relationships and made new and newish relationships more intense. Also, the fear of illness which started in 2020 is now being horribly echoed for you and your husband by a very grim reality.

Sadly OP it sounds like he doesn’t have long. I know it’s hard but the work is providing him a much needed distraction - he will be very aware of his own mortality.

I think if you can use the little time you have to consider what the future will look like if he sadly passes, and get your financial affairs in order.

The fact he is under palliative care and isn’t getting urgent treatment suggests that there isn’t much to be done but relieve his pain.

I haven't read the whole thread but I recall from previously that you have a huge garden. You need to make that a space for you and the kids. There will be help out there to do this.

You sound as though you are looking for an escape route. It's totally understandable. You have a hideous situation in front of you. But there are some practical solutions to help make this less awful, and those are the paths to think about.

I'm sorry, OP, what an awful situation for everyone.

And unfortunately, what I think some posters are missing, as you've been alone in your marriage for a long time, well before the diagnosis. And a single parent in so many ways. And probably the knowledge that had the situation been reversed, had you been the one diagnosed with cancer and unable to continue to do everything you'd been doing, he probably wouldn't have stepped up for you in the way you've continued to step up for him. Even though in most ways, he didn't deserve it.

You have to do what's best for you and the children. Wishing you well.

I still can't see any reason why you can't use the garden office (you mentioned in your first thread) for a family room - can you not put a sofa, a few chairs in there and hang out with the children there as much as you like, in the nice quiet garden room with no working husband around?

We don't know that as a fact - you're guessing.

What is a fact is he controls the money;

So sorry OP. No different advice to anyone else, but I really hope the biopsies etc help pinpoint the prognosis asap, which should help you decide what to do and when.

I'm in a different position to you. I adore my husband who has advanced cancer, we've been married for a long time and the kids are adults. I can't imagine going through this for someone I dislike.

The waiting for treatment is the worst as its the unknown. As soon as you are in the care of the professionals its better and you'll get access to help. Your mind is everywhere with the what if's, what's going to happen, can I cope etc etc

If you have a Maggie's centre nearby or at your hospital please go. Its for everyone affected by cancer and they offer counselling services. Its a calm oasis in a storm of shite tbh. We also have an amazing Macmillian nurse - she was my go to when I had any questions and just chasing up appointments. They can see all of his medical notes and appointments but you will need to get his permission to action.

My husband is now retired on ill health and I work from home so we're in each other's orbits a lot more but he's busy with voluntary work and gets out regularly. I can't imagine him being under my feet all day - it would drive me nuts.

You need to vent to someone and you are allowed to have all of these complex feelings.

It's clear that you're not going to change his mind about working and I can understand that it's something that gives him self worth, it's a distraction, and it's something in his life that he has some control over when his body is doing the opposite.

I've not seen your responses to the following two suggestions:

• find somewhere else in your home for you and the children during the day. It doesn't have to be a big home for this. I lived in a small flat with my youngest and the living room was open plan with the kitchen but we still could have played in the kids' room and watched a TV/film/read books/relaxed. I live in a small terrace now and during Covid we had to find a way to have separate spaces.
• tap into your village - who are your friends and family? if having long days out is knackering, who is in your life where you can break up the days by just spending a full day at their home, in their garden - and it has the added support of another adult to offload to and support you4

Oh hang on, there was something about being in a cottage? And your children being too young to understand that they're not allowed in a certain room of the house.

Not sure where you're based but there are other charities and support groups as well as MacMillan, Tenovus near us is one example. I know partners and spouses and children of people who are living with cancer who also have had support and engaged well with projects and staff at Marie Curie, Velindre. Perhaps once you have more information you can be better networked with these sorts of organisations which are local to you.

I also want to say, because I've not seen it said by anyone else so far, is that you don't have all of the information at the moment so I know it's easy to catastrophise and imagine different versions of the future. Do you have the full picture regarding treatment plans yet? I think you said there's a diagnosis but you're awaiting a biopsy. Everyone's cancer experience is unique. Make sure that you're getting the information that you need. I've just tried looking again and I did miss that you mentioned it's stage IV and in his bones. Through a friend I know that some people can live well with stage IV cancer along with treatment but she put wellbeing much more front and centre than I think your husband is at the moment.

When you have more information I think it's really important that you can talk with his team about the challenges you're facing as a family unit.

Your wellbeing and mental health are also important. My grandad was surprised when his GP pointed this out to him when my grandma had a life limiting diagnosis and needed increasing levels of personal care, he was depressed and needed support and respite too.

How are his work? Are they taking his lead as he's the one saying he can and wants to work to the extent that he is?

That said, if he's in pain and he's likely to be in that chair whether he's working or not, I don't know if that's so important.

I'm glad you've got a space to vent here but I really want you to have some in-person or at least local and not anonymous contact and support.

There's also a huge online community on Instagram of people living with or supporting someone living with a whole range of cancers and stage IV cancer, I know my best mate found this really helpful during her early diagnosis and treatment as it was during Covid and she was even more isolated from the other support and her friends and family than in normal times.

The main thing is: it's really shit and unfair.

He sounds very controlling..I was going to ask are finances shared, but it doesn't sound like it. Can you talk to a solicitor for any legal advice? While I know you don't want to leave him, would the possibility of this happening have any effect on him?
He sounds very self centred in that he is happy to continue working, despite this causing a massive impact on everyone else (not being able to be in the house) and him refusing to allow you to do much about it (paying for youngest to remain in nursery).

Also the dreaded chair....you say he purchased this. Was this advised by some one that this was the exact model he needed? I am wondering whether a visit from occupational health would help look at the house and adapting it appropriately.

As you say that at the moment the long term diagnosis is unclear you need to think how you will cope if this goes on for years and the impact on your own health and the wellbeing of your children. Surely it's not good for them being in a home where daddy is so unwell he can't do anything with them and they can't go near him, but he is well enough to work and will sit for hours doing that. That is going to give them a very confusing message.

I can't recall if you have already spoken to school about the diagnosis and what support they can offer, if you haven't said anything yet then I can imagine if your child says anything when back at school in September this will trigger a safeguarding report and someone would be checking in with you anyway (think about it, child goes to school and mentions they were out the house every day as daddy is poorly and doesn't like it when they are home the teacher is going to need to act upon this).

Also I feel you are going to burn out. You say you have no support so what happens if you have a breakdown?

As I said, it’s tough even when you have a good relationship. It’s very much harder when you don’t. Not everyone’s experience is the same as yours. You cared for your poor dad because you loved him and he loved you. But not everyone is going to be the same or react the same way, especially when the love has gone on both sides. I know exactly what it’s like caring for someone you had a complex relationship with and I’m not going to berate her like some on here.

As you can't move the cumbersome chair would it be possible to buy another and place it in a bedroom or somewhere else? Even if you had to rearrange how you use your bedrooms (you moving in with a child or putting the two children together). This would at least give your husband another option of a room to work/be in. This whole situation sounds awful for you and you are doing amazingly. Unfortunately, someone being ill doesn't change their personality (except in Disney films) and your husband is basically very self-centred.

Oh OP. Such a hard situation. Solidarity.

One thing that leaps out at me - do you have any friends? Mum friends or not-mum friends, I know that if I was your friend you could say all this to me in person and I wouldn't judge you for the reality of it. I agree, I don't think you can leave him right now and that is what it is.

I would however tell you you could rock up with the kids all day. ESPECIALLY if it would entertain my kids in any way. You need to ask your friends for the support you need, they might think you want space and be waiting for you to tell them what you need. Send an SOS text, the good people will rally. What's the worst that can happen?

(btw re him controlling the money - I understand that's something you can't work to change right now but you ARE going to need to make sure you can access bank accounts, POA, any life insurance, critical illness etc. Macmillan and Maggies v good at having people who can help with this, and he is going to HAVE to hand over control for the benefit of the kids at a minimum)

Everybody needs some level of care when they are dying. It’s a person’s time of greatest need.

Ive had plenty of complex shit in my life inc in my immediate family.

Yes, if you have to care for someone who you didn’t have the greatest relationship with that’s complex.

It doesn’t mean that DH doesn’t deserve a base level of kindness & understanding. Even if he was a crappy DH. It doesn’t make it all go away, it doesn’t turn it into fairyland.

And Op deserves kindness too.

Has an application for carers allowance been made? Or a check to see if you’d be eligible? The money could then be used eg for extra nursery time, a cleaner, or anything at all which would alleviate the situation

Re children staying home - Amazon has a lot of outdoor climbing frames with slides etc also ''jungle gyms'' at various prices - mine had one which they loved.
I think I put it together myself.
Worth a look.

Clearly I’ve touched a nerve and upset you, which wasn’t my intention but I’m sorry for it. I didn’t aim my initial comment at anyone in particular. Personally I think she has been kind to him - for one thing, she’s come on here to have a rant rather than having a go at him. She’s in a really tough position and I think she’s doing her best. That’s all.

sending love OP. You do what you need to do to get you through. Hopefully you will soon get a prognosis and know what you are dealing with here.

It does sound very much like immediate relief would happen by moving your DHs chair into a separate room so you and the kids can be at home in peace. I know it’s hard to move but can you think about where a good space might be and then enlist some help from friends or family.

Dear @aponyatblackbirdcottage, I am so sorry that you are having to live such a shitty life for now. I think that it must be especially horrible for you at the moment because you have no idea when this situation will end, whether that will mean that your husband dies, or he gets better, or - I don't want to say this - his life doesn't change much for a long time, maybe even years. So, I really hope that his biopsy is able to give you some proper answers to those very difficult questions.

Once you know what the liklihood is of his cancer getting worse, improving, or just staying in the sort of chronic limbo that it appears to be in right now, that would hopefully help you to cope with whatever the reality of the situation is.

@Fullydisgruntled - quoted above - is obviously trying to be helpful, and if one of her precisely 4 ways to solve a problem resonates with you then that is good, and it will hopefully help to resolve what is at the moment one of your most difficult issues.

However, I don't agree with her about there bring precisely 4 ways to solve a problem, and as your problems are specific to your sad circumstances, I will suggest one other specific way to try to resolve the issue of your husband working in the lounge every work day.

I think that you should ignore the fact that your husband would find it very difficult to work in the lounge while the children were there, and just let them lead their lives in any way that is normal for them, in their daily routine. They have only 1 chance of living their lives in the best way that can be managed under these awful circumstances, which imo means that they have their lives disrupted as little as possible.

You have already told us OP that your husband has refused to let either of your children go to holiday play care during these summer holidays, and that he also won't give up work even though he could do so financially. It seems that your husband is trying to put you into an impossible position, and just because he is in a lot of pain, and may be dying, he has no - moral or otherwise - right to insist that his way of wanting to arrange things is the way that the rest of you should actually put up with.

So, I think that the children should be allowed to play in the lounge, especially if their antics are within the parameters of what is normally allowed inside the house. Your husband can decide whether he wants to struggle on trying to work under those conditions, or give up work, and either sit there feeling miserable all day long, or he could actually become a much better parent to his children by spending quality time with them, and joining in with their games whenever possible, or even just by reading them a story each day at snack/quiet time.

From what you have already told us OP it seems unlikely that your husband will choose the better option, but I don't understand why your husband is the only one who can insist on things. What could he actually do, apart from rant and rave, if you say to him that his way isn't working, that it isn't fair on the children, or you, and therefore you are insisting that the children do use the lounge as is normal at weekends and during school holidays?
Good luck OP, you are a brilliant mum, and deserve so much more than this selfish man has ever given you xxx