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.

Sadly, it is also possible that some of the being a crappy husband is due to the location of the primary. DH was so so tired for at least a year, and not much help - i was so fed up - and then he was diagnosed with a tumour that had caused the tiredness. He had also prioritised work, I think trying to carry on provinding is very very important to many men. But your dh does now need some counselling so he can try to spend a little time with the children, or to make things a little easier for you.

Posters are all missing the fact that there is no nursery option now- that ship has sailed. It’s for another 4 weeks of summer holidays till school starts for DD.

OP- would you be able to see if there’s any local teenagers who’d want some summer work just coming and babysitting a couple of days a week just to give you an extra pair of hands? You could still be there with them but you’d basically be paying them a few hours to come and entertain them and once they knew them a bit better, take them to the park for a bit etc. It would give you a bit of headspace and just mean you don’t have to be ‘eyes on’ at all times plus the novelty of a new person coming to play would be a distraction for the children.

Incidentally if you are near west London, Halo children’s foundation support children who’ve been through bereavement- they have a play cafe in Uxbridge. I know your DH is still here and you don’t need those sort of services yet but somewhere like that can be a real refuge and have people around who ‘get it’- their play cafe is open to everyone, if you’re not near there, there may be something like that in a town near you but it won’t necessarily be obvious.

What speaks to me is that you just don’t get any time to just ‘be’ in the day without small children because you’re carrying everything. And I do think it’s different than being an actual single parent because you’ve got the added situation of your DH which would be bad enough if he was supportive. Presumably you’re actually doing a lot of caring for him too if he’s quite immobile.

OP - there’s a difference between cancer of as yet unknown primary that has metastasised to the bone and primary bone cancer that has metastasised to distant sites like the lungs. Sounds like your DH has the former and it’s possible your friend may have had the latter.

Bone metastasis as opposed to primary bone cancer is not likely to be more than a year and may only be a few months if that.

Don’t beat yourself up that this will go on forever because it may be over by Christmas.

You are in limbo..it is a normal phase as a carer. In one way you want it all to hurry up and be over so your life (and home) goes back to what you know but in another you feel guilt for feeling this.
There is no right or wrong way to feel or do things. Everything right now is magnified and him working is an avoidance technique trying to prove to himself and work colleagues he is fine.
Maybe he is panicking about money knowing he wont be around much longer to support you.
I would suggest you try and carry on as normal, if the kids make a row let them, what else can you do, you cant go out everyday.
Wait until you both have the primary source diagnosis and onward plan - things may be clearer then. Try not to lose sight of your needs in all this and also ignore posters piling on you and questioning why you cant leave - as if it was that simple eh 🙄
Sending support

You mentioned in a previous post that you were out with the children every day from 9-5 and finding it difficult because it was so hot.

Well yes you can see why she needs to take them out.

Ah up this is all so sad. Sending you lots of love. Hard times don’t last forever, the days are drawing in , September will soon be here and the children will be back at school giving you room to breathe. You are correct too life will naturally get easier as they grow up, you’re in the trenches as my mate calls it.
Are you able to plan for the future? Has your DH organised a will and POA? Hopefully you’re going to be well provided for

Thanks for this. We do need some answers but none as yet. You’re right I want it over and feel awful for feeling like this.

Except it really doesn’t matter now… he wasn’t a supportive partner. But now he has cancer in his bones so can’t help much and he won’t be around that long to bother with splitting.

OP the reason bone mets with CUP survival rates are lower than some bone mets with known PC is partly that when the PC remains unknown it isn’t being treated.

CUP bone metastases have much shorter survival because the cancer biology is usually far more aggressive, the primary is often a fast‑growing type like lung or GI, and doctors can’t use targeted treatments. This is unlike Prostate cancer bone mets for example which behave completely differently because they’re slower, hormone‑responsive, and highly treatable so survival is much longer.

Sending you much love @aponyatblackbirdcottage

what we now realise looking back is that my dad’s personality, although sometimes difficult had become more so as the cancer took hold, but we just didn’t realise at the time because it was gradual. We just thought it was grumpy old man territory. We now think it was more likely extreme pain. Not excusing him or your dh, but perhaps a reason?

Also, we never found my dad’s primary and he was to frail for chemo, following his surgeries for the metastatic cancer.

We had hospice care at home, organised by the hospital, after my dad went in for an infection and hospice had no space. This was a really good alternative. The GP and palliative team were super.

And yes I get the chair. The first thing we did when my dad died, was call the company to take the chair away. On the same day.

it’s a difficult position to be in especially when you have such little ones. 💐💐

You are in shock and grief. I don't know anything about this type of cancer but if he is in so much pain and immobile, that doesn't sound like a long term situation. My father died of cancer and it was hard to conceptualise that he would die of it and it felt like the current situation as it was then would be the new normal, but it wasn't and he did die and it didn't take long.

I really, really feel for you @aponyatblackbirdcottage. You are between a rock and a hard place. Him working at home and taking up the entire living area is utterly unworkable for you and the kids and obviously he’s not well at all and is working to keep his mind busy and feel like he’s still alive. I don’t know what your place is like but maybe alterations could be made so that he has an “office” and you and the kids can have your own space. Maybe you might need to look at moving or discussing alternative housing arrangements if it looks like his prognosis is as you have said. You have so much on your plate at the moment @aponyatblackbirdcottage, I can imagine everything’s very stressful.

Just wanted to say my heart absolutely goes out to you. I have no practical advice other than standing up to a selfish man is really really hard initially but does get easier. The pattern if selfish laziness with you actually doing everything is not sustainable for your mental or physical health.

They dont see how selfish they are do they? I guess they cant, its beyond their comprehension
its all about putting themselves first, no thought for you as you are struggling to stay upright
Sometimes you want to scream at them but they wouldn't hear
Feel for you💐

Hi OP, I've read all your replies but not the full thread so sorry if I'm repeating previous advice.
I lost my DH to cancer recently and can recognise some of the frustrations that you are sharing. Our children were somewhat older though.
Have you found any peer support forums. I found these invaluable as I was able to speak to people that really got it. Im guessing you are under 50 so please look at shine plus ones. Shine is a great support organisation.
So many unknowns is really difficult and it is normal to feel frustrated and angry. Have you had any support for you? Penny Brohn UK offer counselling for carers of those with cancer over the phone. It might be worth getting on their wait list.
Having been in a similar position to you I really do understand the weight you are carrying and how tough the realisation that you have been carrying a lot of the weight pre cancer also and that won't change for some time.
What helped me the most was working through some of these feelings and having spaces where I could be really honest about them.
Sadly your reality is that you are going to be the primary care giver to your children now whatever you can do to support yourself in that role will be invaluable.

I’ve only read your posts OP and had to respond. I truly think all your feelings are totally understandable and reasonable. And you really don’t have any reason to feel guilty. You’re doing the absolute best you can in bloody horrible circumstances and your kids are so lucky to have you. Hang on xx

There is no quota of the number of threads an OP can post about her difficult and tragic situation. This thread has obviously really annoyed you for some reason so why couldn't you just move onto a different thread, rather than kicking OP when she is down with your judgemental and sanctimonious post.

As for OP being angry, why on earth shouldn't she be? I get angry at pointless and trivial things like your mean post. OP's and her children's lives have been turned upside down in ways that most of us can't even imagine so why on earth shouldn't she vent on here?

I feel so sorry for you OP. You had a lazy selfish husband that you put up with to survive the early years until they're both at school and you can either breathe and repair your marriage by giving him a hard word or split and make a new life. Now you're on a shit treadmill that's too fast to keep up with caring for a large angry selfish patient and kids who are desperate for his input, for god knows how long......and can't do anything or you're the bitch that was mean to a dying man. Could go on for 6 months or 6 years you must be tearing your hair out.

im so sorry. I really am. I get he's in agony poor man, but you must be so claustrophobic and exhausted. Yes I know he's very sick but he could absolutely be grateful, he could see what you're doing and he could work part time to give you the house for some of the day(s).

would his work allow for nights so the kids have the house in the day for some of it? Whilst he sleeps perhaps?

This sounds like a horrible situation to be in for everyone involved. Your DH is facing up to the fact that he is dying, your children are going to lose their father and you are left trying to manage the resulting chaos.

There is no value in going back through your relationship pre-diagnosis and searching for reasons to excuse the way you are feeling at the moment. It is perfectly valid to feel the way you do at the moment and even if you were totally in love with your DH and the relationship was fantastic pre-diagnosis, illness like this changes everything and you might have still ended up feeling this way.

It sounds like you feel trapped in the current circumstance, and symbolically your DH placing himself in the middle of the family home as a constant reminder to all of you as to what is happening is probably quite distressing. When my DF was dying I still remember the relief when he went into hospital for palliative care and I only needed to be there for a certain number of hours a day when I could give 100 percent and be a "good daughter" and say and do the right things, safe in the knowledge that I would be able to go home and completely forget about the tragedy of it all for at least a portion of the day. In the last year of his life I remember feeling inconvenienced by his illness and then simultaneously feeling ashamed, which was quickly followed up with me thinking of all the times he had let me down as a child which in my mind justified my feelings of resentment. Terminal illness is exhausting and thankless - and it can also feel like there is no light at the end of the tunnel.

I wish I could offer some more practical advice, but I just wanted to let you know that I understand how you are feeling and that they are all perfectly valid emotions. I think that you have got to try and carve out some time for yourself away from the DCS and your DH. If I were you I would just go ahead and book the children into some type of kids club or daycare, or try and get grandparents to have them for a few hours each week.

To give your DH some credit he is probably throwing himself into work because it is the only way he can still feel himself and feel useful - i.e. providing financial support. If he is in a good job he probably has life insurance as part of his benefits so by hanging in there perhaps he believes he is ensuring there will be a financial buffer for you after he is gone. Also, maybe in some strange way he feels that he is being more "present" by placing himself in the living room with the children around him?

Good luck with it all OP - even if you don't get any practical solutions on this forum I am hoping it might help that you are able to vent your frustrations because I imagine it is difficult to voice some of these thoughts to friends and family for fear of judgement.

This is so so hard. One thing I will say is sometimes when you are really in the trenches you don’t realise how deep it was - be really kind to yourself now because this is a lot on your plate.
of course he is being unreasonable working during the holidays in this setting. I wondered if you could go elsewhere during the day to at least relieve the immediate pressure. I also wondered could you have some counselling? I think it would help you process it all. Do you have family near that you can lean on? You need some support through this; I am so sorry this is happening.

I agree. I wouldn’t facilitate him occupying the living space every day. Let the kids play, listen to the radio or put the tv on if that is what you would do if he is out. Force the issue, the discussion. Yes, he is in pain but you don’t all have to tiptoe round him all the time, it is up to him to find other ways of coping. At the moment he is ruining 3 other lives. Make him see that.

Gods almighty, you are between a very big rock and a very hard place, I feel for you.

You've got every right to be angry at what life has thrown at you.

I know you don't want solutions so I won't offer any, I will just cross my fingers for all of you, including him, that he dies quickly, because sufferers and medics have told me that bone cancer is a pain they just can't stop in a conscious patient.

Hang on to the fact that you know it won't be forever.

I assume that the lack of sympathy towards OP's DH is because he was never bothered or interested in his own children so him ignoring them now isn't something new. He has always been a disinterested and completely hands-off father. His illness hasn't changed him. It's just exacerbated and magnified his selfishness.

I doubt that he is agonising about not seeing his children grow up. If he was, he would want to spend time with his children, not completely ignoring them like he is doing.

@Clearinguptheclutter I'm sorry you are having to go through this. I can hear the frustration in your typing. I can imagine this level of life change would be difficult with someone who is a supportive and considerate partner, but to be going through it with someone who has always done what they want and expected you to work to accomadate them, I don't think i could not say anything about it, cancer or no, so you are doing brilliantly in my opinion.

With cancer when you are waiting on the actual diagnosis, you can't plan anything and so your mind naturally goes to all the worst case scenarios simultaneously. In reality though it won't be like that and you have to try to stop worrying about the future and how this could go on for years. There are things that could happen and i don't mean the inevitable it could be that there turns out to be some sort of treatment that improves his quality of life.

In any case it's shit now but the old adage holds here this too will pass, eventually it won't be the summer holidays you will be back in a routine, your dc will end up in school, you will be able to get a job, you will have a life outside of this.

Your lack of access to money is what concerns me most. You've stayed to look after him in his time of need but you aren't getting the one thing an unwell high earner should be able to give you and his children, the money you need to look after them. Do you have a joint account? If not, this is something you should try and sort quickly as will make life easier on a practical level when he declines and when he does die. Does he have a will? Please have the money conversation with him and say how unfair it is that you're trying to support his desire to keep working but you don't have the money to take them on days out or buy in other help. What else is he keeping that money for?