Supporting a husband with secondary bone cancer while coping with family life

[isthisaplum]

My DH started suffering from pain in his hip bone at the beginning of this year. I did think he was exaggerating a bit - not exactly intentionally but more winding himself up into a bit of a state with it. As it transpired, it was more sinister than that and it is cancer of the bone. It’s a secondary cancer; the primary is a very rare one and DH has just been incredibly unlucky.

I am a teacher (part time, two days a week) and DH is / was an architect. He’s insistent on continuing to work despite very high levels of pain and is now totally home based.

I hate using cliches but honestly it is just like a bomb has gone off in our lives, or it was at first, and now I think we’re both just kind of staring numbly at the shell of what was. We have two young children and I’m exhausted from doing everything for them plus managing everything else. I feel like my entire day is just charging around after everybody else from when I wake (or more accurately, from when a child wakes me!) to when I finally collapse into bed. I know this sounds really petulant but it’s largely going unnoticed and I never get a thanks.

I have really lost my patience with the children sometimes and feel awful for it; I do apologise but then feel like it happens again ten minutes later. I’m also finding DHs constant presence quite difficult in a way; he had a hospital appointment last week which lasted most of the day and it felt so nice just to have a ‘normal’ day with the three year old. We always used to go out in the morning to a group or swimming or feed the ducks or to a little soft play, then home for lunch and then spend the afternoon playing or doing puzzles or in the garden. Since DH has been home that’s been a lot harder to manage.

Our five year old is confused and sad and a lot of it is coming over as anger but at random things or objects; he won’t really open up about what he’s feeling (I suspect he doesn’t know himself.)

I have a friend who lost her brother to secondary bone cancer and from the sounds of it that poor young man had a horrible end to his life. I have to keep telling myself that this was more than twenty years ago and things have come on massively. She seems to think I won’t be able to go back to work in September (I took the last 3 weeks of work off.)

I feel so alone with everything, even going to see friends is logistically very difficult as I rarely have any space or breaks from the children. I’m scared for the future. I feel desperately sorry for DH. I wish I could help him, and I can’t. Posting hoping others may understand.

OP, this is the hardest situation in life. You have done the right thing signing up to the creche, as it will give you some breathing room. Some days you might just want to shower there alone. Could you access telephone psychologist appointments? Could you get a cleaner? Otherwise could you get someone to help with the dinner/bath routine a couple of times a week? If DH has friends/ family if they come over for a day in the holidays and you take the kids for a fun outing to break it up.

I’m sorry you are going through this. I lost my two grandfathers to cancer, my DH was diagnosed with cancer, ok for now, and I’m going to lose my Father from cancer. It’s something that you just can’t explain to others

I hear you. Median for DH's type is 4-15 months, even with treatment. 10-20% alive in 2 years. We're 4 months in already and it's like a ticking bomb.

He didn't have much pain after radiotherapy, just considerable fatigue.

Thanks all. It really is a horrible situation and feels quite unreal.

Adding extra people to the house is unlikely to be helpful if I’m totally honest, the children do need a routine and some consistency and someone new coming in at bedtime is probably just going to get them excited and silly. Unfortunately, as you can probably see from our differing views on the gym, DH and I also have different views on things like cleaners that would make life easier and it isn’t worth arguing with him about it. Plus obviously a cleaner would have to work around him.

Really, I just want some proper answers now, as to whether DH is going to improve at all or continue to deteriorate. It’s incredibly hard to see.

There is no argument here to have OP.

Book a regular cleaner and tell him its happening whether he likes it or not.

It is an argument I’m afraid - he will complain and grumble and yes I could ignore him but obviously at the moment bad feeling is something I’m keen to avoid. (Plus I have found cleaners a source of stress in the past but I do get the broader point you’re making re doing what’s easier for me.)

Cleaners aren’t cheap. We don’t have a shared bank account and so if I booked one I’d have to pay for it, and my salary doesn’t go far as it is.

My DH was very sceptical about a cleaner when I had cancer and I said to him will just get a one-off clean and it was 2 ladies who did about 3 hours each together and he completely came round after that when he saw the difference. It was also useful as he would tidy his stuff for them which he never did otherwise. I'd consider just booking one for a one-off clean initially and telling him.

Cross posted, we don't have a joint bank account either though it was me getting the ESA so I could use that to pay for it though in the end my DH paid for the cleaner as it was in cash. I would try and get access to the finances, he needs to share those as he may become unable to do things himself. Maybe Power of Attorney.

OP it sounds so tough for you being a carer and essentially a single parent and trying to work too. It also sounds as if your DH is stubborn and doesn't want to feel written out of the script.
I don't have any magic advice other than to do whatever you can to pace yourself. This is a huge and hard situation to be in.

Hi Isthisaplum.

I have an incurable but not teminal cancer, and although I am in the position of being the patient rather than the carer I can utterly relate to where you are now. In fact when I was diagnosed I was genuinely grateful that it was ME and not someone I loved going through it, as I knew I would cope with treatment and could do a lot of it alone, which I did. I’m convinced I would have struggled like hell had it been my partner.

I personally found Macmillan/Maggies etc fairly ineffective. What I found really helped was;-

Joining online groups for the specific cancer I had on FB. It was amazing to talk to people going through what I was with similar treatments/waits for scans etc. The groups I am on are very welcoming of partners too and these were, in darker moments, the contacts who kept me going.

Asking for specific, practical help. People often just do not know what to do but were really happy to be able to do SOMETHING. Maybe ask a close friend to drop a meal off one a week, ask if someone can come and sort your garden once a fortnight, have a whatsapp group of close friends who can offer to keep your DH company once a week so you can have a few cancer free hours? If you can do these on regular days when you know they are happening then you know when the rest is coming.

If you can afford to do NOT wait for the NHS counselling that is offered. Cancer is a genuine life trauma, get yourself and your DH some professional help to deal with this. You might find him having a session once a week where he can trauma dump stops him needing to talk about it so much with you. (its hard not to, as it a bit all consuming, esp if he is now not out and about much)

Speak to the CAB (the ones in our local cancer centre were great, this was the one area they WERE useful in, and could give cancer specific advise about any financial support I could get)

Remember that you are a human being, who has just had a grenade thrown into your life, and that this journey is CRUSHING for both of you. Take one day at a time and be kind to yourself. Take all the help you can get. And talk to friends as much as you need to, the right ones won’t care how often you need to offload, they will want to be there for you (and the ones who don’t can bugger off)

The cancer board on here is also brilliant, and you will probably find people here going through the same.

I’m sorry you guys have joined the club that noone signs up for. I’m sending you a heartfelt hug.

Just to say that I don’t actually think your DH is being stubborn. AT ALL. He is terrified, and very probably not sure how much of your lives he will still be present for. This will be his way of still trying to have SOME control over his life, which has just changed in EVERY way. I don’t think its possible to explain that to someone very well who hasn't had that diagnosis, even a partner. But he will be doing his best.

You are right, treatment is now light years better than 20 years ago and new discoveries are being made every day. Its worth seeing if there are any clinical trials your DH might be eligible for. These often give access to treatment that later is deemed too expensive for NHS patients.
Be prepared your team may not be able to give you answers re improvements with treatment. Individual responses are so, so varied and they will be wary of setting expectations. The uncertainty is one of the most difficult aspects of having cancer. Its a kind of torture. Im sorry you are going through it.

Contact macmillan again love when you know a bit more big hugs 🥰

I wonder if now that his illness is terminal can you cash in a pension or life insurance and use that money to take the stress off, an extra pair of hands in the home with the kids so you can all enjoy family life and be present with each other more

You might find it helpful to contact your local hospice, even though you probably feel that it is too soon/you don't know enough yet. My OH's consultant suggested that but his GP said it was too soon. When we did meet the hospice team, through a different doctor, they were extremely helpful and changed his pain meds from the GP's prescription.
The hospice can help you to access all kinds of things that you didn't know you needed, including counselling for DC. Your employer and your union will also be able to help you, do contact them.

I understand what you’re getting at but if we could maybe avoid phrasing like ‘cashing in’? That’s the children’s money, I don’t really want to be using it for cleaners now to be honest, that wouldn’t feel right to me at all.

It is so much more than someone doing the cleaning though, or anything like that. I think it’s hard to explain. For one thing I’m struggling to talk to DH about anything, I’ve realised so many topics are based around the future even in the loosest sense and that’s a scary topic right now. And the present is unbearable and so is the past for different reasons. So we’re reduced to banality. The humour and light hearted fun has gone and there’s a somber tone over the whole house. His pain is upsetting to see and that’s for me, god knows what it’s like for him,

And thank you, I do appreciate the replies. At the moment there are still unanswered questions but hopefully most will be answered next week. But ultimately I sense DH will be in denial for a while.

So sorry this is happening to you and your husband. I noticed you said he is an architect - the ‘architect’s benevolent society’ might be helpful https://absnet.org.uk. Wishing you both huge strength.

Sometimes the exhausting bit is holding all the emotions inside…can you afford to have a session of therapy each week? Might help release some of the stress

I am on the other side of this journey.

My partner died in 2015 when my children were 4,6, and 11.

Things that would have helped in hindsight would have been LPA's for health, finance. A will, I still feel incredibly stupid about this one as he had brain surgery and we hadn't contemplated that he would die. A discussion about his wishes for his funeral, I had no clue and muddled through that one.

I got a few videos of my partner saying he loved me, the kids etc.

I joined WAY, widowed and young who support people who are themselves under 50 when their partner, wife husband has died. They have a UK wide support groups who meet up and a huge Facebook community.

There is a 18 month widowed government payment that needs to be applied for soon after death.

Passwords are also important. I lost access to the cloud so lost years of baby, toddler, partner photos.

Sending hugs to you all.

Thanks very much. So sorry you went through this @butterfly990 . I don’t even know how I’m going to explain this to the children.

It’s definitely my phone filled with photos; DHs is more of the photos of car parks and receipts and so on! I do keep meaning to sort proper photo books.

i really wish I had more of an idea re timescales although in all honesty even since the diagnosis he has deteriorated and is currently sat in the chair downstairs as he couldn’t manage the stairs

Re therapy at the moment it just isn’t possible or practical. I’m even struggling with things like dentist appointments and so on.

Question why have you decided "its the children's money"

I faced a serious health issue after my.2nd and realised either one us could die.
We just renewed my dhs life insurance yesterday
God forbid anything happen but id get 700k after tax plus the rest which would mean I didnt need to work and could focus on the kids. He gets the same maybe a bit more.
Ultimately id be using it for their benefit and should I die they'd receive it.

You need to take a step back I really think counselling for you (via your employer?) would be helpful. I would make space for this.
You have a DL membership from the sounds of it so can find an hour.

My old therapist also did late night apps like 8/9pm.

@SalmonOnFinnCrisp it isn’t totally of course but I’d like to keep most of it back for them. DH and I wanted to support them with university and house deposits and the like and realistically that’s going to be very difficult to do on one part time teaching salary.

Money wise the mortgage will be paid off and that’s the biggie and then some money on top of that but as I’ve said I’d want to keep most of that back for DS and DD. We do have a second property which was actually mine before I met DH; I am not sure whether the mortgage for that is included in the policy for DH and will need to check this but if it isn’t paying off the mortgage on that is sensible. And then review. But (I know you weren’t suggesting this) I don’t want to fritter it all away in the first five years or something because I’m focused on surviving myself, I do need to keep a clear head for their teen years and early adulthood.

I don’t have a David Lloyd membership but it’s similar. I can’t just leave them in the crèche while I run off to a counselling session - I have to be in the gym. And tbh I don’t really want counselling at this stage as so much is unclear and uncertain it would end up being quite circular. Once I have a clearer idea of what’s likely to happen and when then it’s possibly something I can consider.

I’m so sorry OP that’s incredibly difficult. I think for now I would muddle through until your appointment when you have more of a prognosis and management plan as that gives you something tangible to hang onto. Depending on the outcome I’d then get admin sorted- claiming benefits you need, contacting life insurance and pensions etc to get all those jobs out the way early.

I completely understand what you mean about the help. So different but when I had PPD everyone offered to help by taking the baby for an hour or making a single meal and I felt like I needed a life transplant not one tiny favour. However- you do need support and help with practicalities will help. Are your or DHs parents around? Could they help over summer? Regarding work I would speak to your manager and explain the entire situation and exactly what support you need (eg a 2:50 finish 2 days to collect the kids). I know you’re a teacher so it feels impossible but you can only ask and it’s an exceptional situation.

At the appointment take any support numbers or accept referrals for input if offered. Sometimes finding the right kind nurse or support person makes a huge difference. A friend whose husband died of cancer had a nurse she could just ring and worry to and cry to in a way she didn’t feel comfortable with her family and friends. They’ve remained friends years later.

finally look after yourself juggling small kids and a very ill husband is so hard. You’re grieving already for the life you thought you’d have and that’s a huge challenge. Sending love.

@ChefsKisser you’ve articulated it well. And in the time I’ve organised everyone and greeted people and thank you so much and so on … even that is draining. Sometimes it’s less trouble to just chop an onion and stick some pasta on yourself, you know?

I definitely hope this next week will be informative if not necessarily pleasant. I had DDs birthday a couple of weeks ago and then a holiday and my mind was on those two things and now I don’t have them and so my mind is full of DH.

We may have a solution re work as one of my colleagues is also two days but different days. Our days each suit the other best! So we’re going to ask to swap timetables. They can only say no …

I sorry you are having to face such a daunting future.
I appreciate the sentiment of wanting to save the money, but you all have to survive to university and house deposits.

Life Insurance/Pension is money saved to be there when it is needed. Honestly that sounds like it is now.
It is very, very easy to burn out caring for someone with serious illness, by trying to do everything.
You need to be honest with your DH about what you need to be able to cope. If having a cleaner would reduce your load then it should be a family expense. You have made a good start with the gym.
My DH didn’t have cancer he had a heart attack and required triple bypass surgery. Even without a terminal diagnosis caring for him burned me out as I tried to work and look after everything. I should have spoken up and said this is what I need.

Take each day very slowly OP, and try and just think of today (which is hard when your whole life has been ripped apart). Sleep as much as you can and take any parenting shortcuts that you can. Go gently on yourself.