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.

I'm so sorry that you are in such a tightly knotted situation @aponyatblackbirdcottage.
I think I would maybe look for ways to subtly distance myself, try & find ways to escape & focus on other things. Maybe make some rough long term plans?

Hi OP.

I can feel the absolute exhaustion in your writing. I'm sorry, this must be so much to deal with.
Would it be possible for you to take the kids away for a week? I know you mentioned money is tight, but I've had some fab camping holidays. You can find cheap spots online and people are often giving away camping gear on marketplace.

Obviously I understand if you're your DH's caregiver and need to be at home.
I just thought it may be nice to get away from it all for a while.
Apologies if this has already been suggested, I havent read all of the comments.

Sending you strength my love 💓

I’m so sorry op, my Mum died recently from pancreatic cancer, she had less than 3 months from diagnosis (prognosis was 3-6 months) as it was so short I was able to upend my life and move in with her for those final month. I felt as though the knowing her time was so limited really helped us focus on what was important.
My Mum didn’t change personality- we had always had a strained relationship but I managed as I knew it wasn’t forever or a long time, you haven’t got that knowledge yet.

My was desperately trying to keep control of her life and decisions but was also leaving others to me- I struggled with that balance and it sounds as though you may too.

Some practical advice (feel free to ignore!)

Your husband’s pain should be managed more effectively- palliative care team should be able to help- we were transferred to McMillan and they were brilliant- had a named nurse who was outstanding and came down to Mum’s a lot to provide support. The McMillan pharmacist also regularly came down and she was amazing as well. If they hadn’t been able to control her pain they would have referred to the hospice for an inpatient stay for pain management. They also provided all the equipment we needed in order to help her.
The hospice also offered alternative therapies for mum and I, counselling and respite care. They also provided family support as well as end of life care.
We self-referred but Dr’s and McMillan can also refer.

Being in these kinds of situations is incredibly lonely and stirs up lots of memories. How you feel is what you feel, there’s no ‘right’ way.

This all sounds awful.

You are “in the trenches” with the kids at this age, you have little/no family support, you have a very difficult husband, you have a palliative care situation, heatwaves, summer holidays, part time work, and a whole household to maintain.

My heart goes out to you op.

So things are “stuck” right now, they won’t be forever. There will be evolutions with his disease that will change the way you all live with it, either good or bad, but things will not be like this forever. It is likely to become a different shade of hell/shit but it will change. Keep that in mind.

Terminal illnesses have a way of disrupting EVERYTHING. They impact so much more than just the patient’s health and the following phases will be incredibly difficult for you all I’m sure… IME living with a terminally ill family member creates a day by day perspective, where the future feels impossible for a multitude of reasons and the now is horrible, so you are just stuck yet pulled in different directions. Your sea analogy is so apt.

You’ve held everything together for all these years… You clearly have the ability to keep doing that…. Him leaving it all to you has, unknowingly, been training for the current situation and your future. You’ve already carved out a life without him by the sounds of it, and that will stand you in good stead, even if it doesn’t feel like it. You will have to grit your teeth and bear it, it doesn’t sound like there are controllable variables at this point in time.

It’s ok to not like him, or acknowledge that it’s not a marriage you would’ve stayed in. Not easy to do but it’s ok op. He doesn’t sound like an equal partner and I’d resent that too.

Things will evolve, and you’ve totally got this.

Re the cyclist your husband mentioned, there will always be outliers. Obviously everyone hopes they will be that outlier, but they are well known exceptions because they are so exceptional.

Take the brain tumour m DIPG (it's a brain stem tumour found in kids). Most die within a year, it's terminal. Except for 1 very lucky kid who has seemingly been cured.

Your husband is hosting on to cases like the cyclist because he's just had the most devastating news possible and is clinging to any hope. I really really hope that there is some hope for him and he gets to live a long time. But I know from a previous thread you'd thought you were talking about a year in a best case scenario. I sadly suspect that it won't be as long as either of you might hope for, even with your frustrations.

I don't have experience of this situation. I have a child who had a 50-50 of a horrendous terminal condition. Thankfully they had the less serious, (though definitely not inconsequential alternative). In that instant, and ever since, life changed. There was a before life and an after life. The before life with being just a mum and daughter and the after life involving appointments and medicines and hospital stays. It's easier because it's my child, but what I mean is I get how quickly life can be upended, future plans abandoned etc.

I can feel the desperation for normality in your posts and whether his cancer is slow or fast moving, that's gone. If it's going to be a long journey, then you need to find a lifestyle that works for all of you. If it's fast, then events will have a life of their own. Either way, it's horrendous for all of you and you guys are in my thoughts.

Are you still working? Where do the DC go whilst you work?

It’s madness right? He’s ignoring his little children in favour of Teams calls. It’s denial of course, but still…..

If you are looking after the children everyday and meeting the costs for that yourself because he as a high earner isn't giving you joint access to those high earning then you are being financially abused. Just because he has cancer he doesn't get to treat you like shit and make unilateral decisions with 0 regard for their impact on you. You sound very passive. Tell him that he's not treating your home as an office. It doesn't have to be a conversation it can be a statement. I am sorry her has ground you down so badly and that his health has trapped you further 💐

It’s not exactly denial, since he’s never really cared about his kids. Maybe it’s his authentic self, too in pain to even pretend to care a little bit now.

Agree with this entirely. Think weeks ( maybe even days) not years. The “not knowing” usually means staff suspect very limited time. I wonder if day hospice may be raised with him as a space where they can address his unmet pain needs and give OP some peace and space at home and eill be easier to persuade him to go & allay some of his hospice fears.

Many charities support or prepare children for loss of someone important and will also fund activities for kids - linked below.

I also wondered if he has “death in service” benefits from his employment which may be a component of his refusal to reduce the work commitments along with his obvious denial and emotional avoidance dumping parenting onto poor OP who is clearly a devoted parent & spouse. Death in service would benefit OP after his passinG.

I think I’d be more unkind than OP and confront him that he is wasting his last opportunity to make lasting memories for his DC who will live out most of their lives with no to few memories of their father.

OP I think you’re amazing and I’d say keep going & mate let go of that anxiety about the possibility of years ahead and focus on preparing the kids for what lies ahead and on yourself - what do you need from him (even if you think you won’t “get it”. Express that need to him and the rest is up to him. Snatch moments of self care where you can , consider compassionate leave from your own job to give you thinking space and me time.
A virtual share bag of skittles is yours!

www.cancerresearchuk.org/about-cancer/coping/mental-health-cancer/where-to-get-support/cancer-support-organisations/children-resources

Oh also forgot to mention he will be eligible for SR1 payments from MacMillan, oncologist office or GP too which may help you financially to a small extent.

Use another room as a play room.
Take control of your day, Op.
You need to pencil in the bare minimum time at home when you will be preparing meals, doing loads of washing and putting the kids to bed.
Make a detailed list of where you can spend time every day of the week.
Play dates
Playgrounds
Public gardens
Public libraries
Supermarket shopping
Shopping centre play grounds
Local public swimming pools
A plan is better than no plan.

Slot DH in for two hours childcare every weekend day and for reading bedtime stories and clearing the table after dinner.
Also allow the kids to watch 1 hour of screens in the same room as DH working
each day.
So DH still sees kids but you are in control of them most of the time.

Ask good friends or family to watch your children while you sleep, speed through some errands or such. DH's work mates might be a support network. Do you know any families from work?

It will be hard.
I hope DH survives.
I hope the DC have some lovely memories of him.

It sounds like you have allowed him to have his own way and too much control, even before cancer. Not helping out and you doing everything.
I see only two solutions speak up regardless of illness, i am ill but still concider my family. Or put up with it. He sounds selfish - i think things like asking to keep daughter in nursery needs to be she will be staying in nursery. Leave him with kids for 10 minutes and go for a walk and call macmillan or another support even social serviced they may have respite facillities for you and your family.

If he's a high earner, what's the issue with paying for childcare/holiday club? What exactly is it you're asking for here?

Thanks all, especially to @DidYeAye16 as you’ve articulated well what I am feeling.

I stand somewhere between the extremes on this thread - the ‘DH is an awful person’ - I genuinely don’t think he is. I think he can be selfish, lazy and thoughtless. And a PP is right that I have allowed that because it was easier for me. If I ever tried to enforce something it didn’t end well, him going on a drive to Screwfix at 5 once, both children fell asleep for an hour and were subsequently up until 10 for example, so I just did it all. But he isn’t cruel or purposefully obnoxious. We actually get on fairly well on a day to day basis. But like a lot of marriages we’ve been tested with little children. My hope was always that the children would grow up, be less work. I’d have more time for me, DH would get better with them and life would get easier. DD starts school next September and I was aiming for that in many ways, now that’s less certain,

It honestly shouldn’t come as a surprise that you can be devastated for someone on a personal level but equally not feel the loss of a husband.

Frankly, I would suggest telling your husband that:

• you are at breaking point dealing with the children, life admin, work, and worry, and something has to give
• the house being his office for full time work hours is no longer practical so he needs to limit his hours to perhaps two days a week, or three mornings a week - a compromise
• given he possibly has very little time left, he should focus on being an involved father (as much as his condition will allow), being present, and making memories with the children who will lose him all too soon

Make it clear that those things are not negotiable. Just because he's sick, doesn't mean he gets to be selfish and run you ragged when there are other options (such as greatly reduced work hours).

Marriage vows aren’t always sacred. In sickness and in health doesn’t apply when your DH wasn’t there for you all those years.

Not to be macabre, but does he have good life insurance? In the event it’s a terminal diagnosis, are you at least going to have the security of being mortgage free with money to care for your kids?

What a load of rubbish.

I can assure you that him having a job (like op has) does not make up for not helping with the kids…did you miss the part where he doesn’t get up in the night or help with bath time?

Op your DH sounds like a massive arsehole tbh, eg not giving a shit about everything you’re having to do and refusing to keep DC2 in nursery during the summer. I wouldn’t feel guilty about leaving him. Nothing indicates he will improve his behaviour.

Do you have any family nearby or elsewhere? Can you look into alternative accommodation nearer them? Can they help with childcare for a bit?

Sorry op i agree with this. It isn’t enough for you to just accept his refusal to pay for more nursery or childcare in this situation.

Tbh, that’s largely what I mean when I say I think some of his behaviour has been sliding into toxicity, and I do think it’s largely unintentional. But now isn’t the time for recriminations and accusations either (I don’t mean that as accusatory towards you or anyone who’s pointed that out!)

I’d examine more carefully why you aren’t prepared to leave. He clearly wouldn’t want or cope with the kids. Having him as a father isn’t doing any of you any good.
He’s ill. So what? Sickness and health goes both ways. Men are 600x more likely to leave a sick wife than visa versa. Guilt is misplaced and you feel guilty already. So that’s not going to change.

Really.
Get counseling.
Separate for the holidays so you can parent and he can “rest”.
See a lawyer.
See what his prognosis really is.
Decide how you can make it through.

I’m a carer, and sadly once a cancer metastasises (is that the right word?!) into the bone then it’s pretty much months not years. Bone cancer is awful, it’s painful and he will struggle to do everything tasks. TBH, I can’t see him being able to work for much longer if it’s this stage already, it will become painful for him to sit. I had a lovely gentleman whose cancer had progressed to the bones and he had to stay in bed slightly propped up as it was the only place he was relatively comfortable.

Has he been given good pain meds?

I really feel for you all. I think you’re going to have to stand up to him a bit and say what you need too. Whether that’s paid for help or care for the kids. Is there a local teenager you could pay to take them to the park or something to give you a break too? You need support as well as he does.

Happy to talk more about my experience with this.

Aaah the husband turned up early on this thread

It will be hard work when someone isn’t a team player (the husband) and leaves the other person to do the donkey work (the OP). The goggles are a good example as it’s just him opting out, being lazy and not taking any responsibility

I asked ai about this and the prognosis for any secondary bone cancer depends on where the main cancer is. As @aponyatblackbirdcottagedoesn't know where the main cancer is, as yet, if ever......no one can give a prognosis for H

I get ‘the chair’ situation. DStepDad bought a chair when his pancreatic cancer metastasised and it became too painful to sit on regular chairs and the sofa in his house. He too, refused hospice care and doggedly continued on at home (I chose doggedly instead of stoically because hospice care would have made the last few days easier for him). The chair was monstrously huge and we had to take out a bay window to get it in and out.

It totally dominated his downstairs house. I miss him terribly but I was glad to see that chair go.