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.

Sorry you haven't received a reply yet.

This situation is horrendous. It would always be terrible but its a thousand times worse with young children 💔

You can feel anyway you want to feel and this is a safe space to express those feelings.

Hope someone comes along with some useful advice.

I didn't want to read and run.
Here's a hug - it sounds so tough.
You've got two young kids and a sick DH. You are going to be shattered.
Does the three year old get any free hours? Is the five-year-old at school in September? If so, you will fit into a new normal, whatever that may be.

Good luck moving forward with DH's treatment.

Thank you for replying and I understand why people don’t. A few friends have said to me they just don’t know what to say; they are hurting for me and want to help but can’t.

DS has just finished reception and DD was doing two days at nursery; she’s starting preschool for three days a week in September (she gets the fifteen funded hours) so I’ll have a day ‘free’ (well, 9-3) to breathe a bit. I’ve planned some nice days with them this summer but it’s hard feeling like we need to be out all the time.

I do need to try to be calmer for the children though. It’s hard as I’ll be patient all day and then it gets to five o clock and I’ve had demands on me for eleven hours and I’ll crack and shout. It isn’t fair on them.

I am going to have to ask work to be flexible in September around DDs pick ups as well; I enrolled her in preschool on two of my working days when DH works from home anyway. Now he is home all the time but can’t drive safely and can’t walk far so he can’t really pick her up. So stressful!

I remember your previous thread about the summer. I'm sorry this is happening to you. It must feel like a very frightening, lonely and isolating thing to be going through. Have you reached out to any of the cancer charities like Macmillan? I would think just having someone to talk to who understands might make a world of difference? I know it's not the same thing, but I had a very sick DC and during their illness our world felt like it telescoped into something much smaller and it felt like people who hadn't been through it couldn't really understand, no matter how well meaning they were.

I hope you are able to find some peace as you navigate this, @isthisaplum

I understand - my DH has incurable secondary cancer in bones too (unknown primary). He has worked from home for last 4 years, but our world has definitely shrunk since his diagnosis in March. We both work full time, I'm out of the house 6.30am - 5pm but not in school holidays. My employer is very understanding and I am able to attend all of the hospital appointments with him.

Has your DH had palliative radiotherapy? DH had it on the largest pelvic lesion and largest spinal lesions (there are around 10-12 lesions across the pelvis, ribs, spine and shoulders and he's already fractured a rib just by sneezing) and the pain relief has been incredible. There's also been a good response to chemotherapy (cycle 5 next Monday), so in many ways life is kind of normal.

However, there is still the way our lives are now organised around treatment and appointments, his complete emotional reliance on me (won't engage with any therapy or charities), his fatigue, reduced mobility, neuropathy, the way that the cancer and its implications dominates 80% of our conversations. We went away for the weekend a couple of months back and on the Sunday morning I said to him 'Can we not talk about you dying today?' as it was just overwhelming.

I understand your 'petulance' too. I was unwell with gastritis recently and I said to him 'I'll never again be the sickest person in this house!' even though I had 5 days of D&V and had to take time off work. I am struggling with the 24/7 'ness' of school holidays and the fact that he has no friends or family in the country we now live in, so I am his entire world apart from work. I am craving even 30 minutes away from the house sometimes, and luckily have some very good and understanding friends who tune into me either needing to talk about it or pretending it isn't happening for a while. We don't have small children and there's just us at home now.

It's really, really hard, and I know some of what you're going through, OP.

I am terribly sorry you are facing this op. Life can be utterly crap. It’s often just as bad for the partner as it is for the patient and all of your feelings are completely justified and more. I don’t know how you have managed to carry on working at all!

Bluntly, you need more support and practical help, you need a break, and you all need respite. Please don’t be reticent about reaching out to cancer charities and other organisations to ensure that you are getting maximum help and financial benefits with which you can buy in help. Is your dh claiming everything that he is entitled to? Get help assessing this too!

If your friends want to help then they CAN. But you need to tell them what to do! Please don’t feel uncomfortable about it. If ever there was a situation deserving of support, then yours is it. Ask one of your friends to start a WhatsApp group on your behalf where they can coordinate school pick ups and drop offs. Others can do a couple of bags of laundry a week. Others can drop off a weekend meal. Another could baby sit once a week and give you a regular break.

I had a neighbour volunteer to come and put my supermarket shop away every Friday morning and she kindly did a quick clean and hoover at the same time. That one weekly hour-and-a-half made such a difference and she was in and out like a friendly ghost. I shall never forget her kindness.

Ask for help op 💐

What you’re going through is emotionally, mentally and physically exhausting (and terrifying) I’m so sorry. Nothing really to add, there’s been some good advice on here. If getting support from external agencies seems overwhelming can MacMillan help or maybe there is a Maggies near you? X

@thornbury thank you so much, it really helps when others understand.

In many ways we’re in the early stages as we only found out about the cancer last month (though this pain has dominated life for a while) and we don’t even have the results of the biopsy back yet. So while I did reach out to MacMillan in the absence of any further information we kept running into a wall. I’m sure they will be very helpful once we know for certain what’s happening.

He has an appointment for palliative radiotherapy on Thursday and I really hope it reduces his pain because he really is in agony. It sounds selfish but what I’ve come to realise is while pain is awful for the individual it has a sort of ripple effect on everyone else.

Friends do want to help @Climatepleasechange753 - I didn’t suggest otherwise I don’t think? - but it’s hard at this stage knowing what they can do. And with it being the summer holidays a lot are away for some of it and scrabbling together their own childcare etc. But I am seeing them a fair bit, which is very helpful. It isn’t really needing the supermarket shop putting away that I’m about, it’s a lot deeper and more painful than that.

@isthisaplum Hi So sorry to hear about the situation you’re in. My husband had similar. A rare cancer that had spread to his bones. He had various treatments which in all gave him around 6 further years after diagnosis but eventually the cancer spread through his bones into his skull and he died. I won’t go into details regarding the end but it wasn’t good.
At the time I struggled and craved some time to myself but now I’m on the other side. I’d go back in a heart beat.
Having support is definitely a major help. I now wish I’d gotten more support for my kids. They were teenagers at the time and didn’t cope at all.
Unless you’re in this situation. It’s impossible to understand the toll it takes. I’d make sure your finances are in order as it will help down the line. A Will etc.
Also my Dh found the radiation on his bones incredibly painful after treatment for several weeks. It was by far the most painful treatment he had. Be aware of this too x

I am so sorry this sounds so hard to cope with and you must be feeling at what this means for you all - both in the short term and long term.

Can you afford some therapy or counselling? That would give you chance to rant / offload and get help with your emotions and would also be a very important ‘fire break’ in the day / week to help reset your tolerance / patience with the world.

Is there anyone at nursery who could do some regular babysitting perhaps? I think finding chances to reset yourself as much as possible will help with the overwhelm that leads to the shouting.

When mine stopped napping, I still had ‘quiet time’ after lunch when I put the TV on and left them to it for an hour or so and I titted about on my phone or sat in the garden for a bit until I felt more regulated.

Could DH supervise a quiet game or again a bit of TV at 5pm whilst you escape for a quick walk before starting dinner / bath / bed - that might help your general tolerance levels too.

That’s another worry - I don’t know what they will say next week.

DH has a mass between his lungs and while this hasn’t been confirmed to be cancerous considered in the context of cancer in the bone it almost certainly is. As much as I can glean it’s likely something called a thymic caracoma which is both rare and aggressive. When I have asked ChatGPT it has told me that the median is 12-36 months and given that they aren’t considering chemo for DH he is most probably on the lower end of this. But of course I can’t know that for certain and even the doctors don’t as everyone responds differently to treatment.

I wish I knew what the next twelve months are going to bring us, that’s the main thing. It’s so uncertain. Thank you for answering. I really really do appreciate every reply.

@FusionChefGeoff the problem is they’d have to babysit with DH there which is a layer of complication. I’ve joined a gym with a crèche for them which helps but even that indicates to me DH doesn’t fully understand; he grumbled at me about it being a ‘waste of money’ and I’ll never get a lot of use out of it which may be true over twelve months but honestly it’s the next two I’m most concerned about!

He can’t really safely have them alone - the problem with kids this age is you can tell them they are having a quiet game but they often have other ideas, and to be honest DH has never been very good at managing their behaviour, that’s always fallen on me.

@isthisaplum Honestly, palliative radiotherapy has been life-changing. So far, the worst days were those immediately before radiotherapy and chemotherapy started. He was on morphine tablets and struggling to sleep, move, get dressed, climb stairs etc. Now he only takes morphine after chemo because of the intense pain caused by G-CSF injection stimulating the bone marrow. Bone biopsy results came in on 24 Mar (metastatic poorly differentiated carcinoma) but no treatment until 27 April, when he had the first chemo cycle and 5 consecutive days of radiotherapy.

We have had first class care and the intervening weeks were spent with him having every 'oscopy' available as they tried to locate the primary. Tissue from a second bone biopsy was even sent to Mayo Clinic US but even they can't identify the origin. We are glad that things have moved very quickly, but this type of cancer has a very poor prognosis. We are fortunate that DH just turned 62 and we are not raising young children while dealing with this, although his DD (my step-daughter) is not quite 18.

Very big hug @isthisaplum.

So sorry for your DHs cancer and for all of you. It sounds like he maybe in denial a bit which is a common coping mechanism but the pain sounds out of control and especially with little kids it's a lot for the future as well. If you are both OK with getting a life expectancy that may give a timeline at least. Re the pain he needs lots of help with this and discuss with his team / oncologist urgently and make sure he is honest about pain levels not heroic. I have also heard of people getting pain management from hospices as well, you don't need to be at imminent risk of dying.

I would get a will in place. When I had chemo I found it useful to get once a month a cleaner in to do house, a regular cleaner would work to, that may help. There maybe benefits he will qualify for if money is tight, like pip and/ or ESA, and if he gets pip if you weren't working you could get carers allowance, it's not much but would pay for a cleaner. Macmillan have a financial advice line which can help.

I think gym with crèche is a great idea, it will give you all a break and sports can help mental health. The one we used to go to was quite social at David Lloyd as well. If you have something like that it could give you all a break, had kids clubs and indoor / outdoor pools.

The gym does not sound a waste of money, go. Build in a mental break for you.
Friends probably need a bit more direction as to how they can help, they might not know what to do or say for the best.

Your school should have an Employee Assistance Programme, they provide counselling and support, it might be available quickly too. It’s not just school issues they’re there to support with. They’re a charity.

Here’s a link in case it’s useful.

https://www.educationsupport.org.uk/get-help/help-for-your-staff/employee-assistance-programme/

Sending huge hugs OP.

We had similar some years ago, but your post resonated. Firstly, I’m so sorry you’re going through this. It is as though a hand grenade has been detonated in your life and there will always be the before and the after. I think there is a huge gap for the spouse turned carer - you’re just expected to keep things going, your children, home, career, updating family etc and be a full time carer for the person you once shared all of life’s burdens with. Your workload has doubled and the stress is immense but there is little acknowledgment from anyone, let alone the ill partner going through it as they’re obviously in the eye of the storm.

Practical things that helped for us included a cleaner, supermarket deliveries, friends making meals once or twice a week, friends coming to spend an hour or two with the DC in our house so I could catch up on hospital admin, and when DH was in hospital, a babysitter for a night each week so I could go out and do normal things, eg cinema with a friend. I visited the hospital 6/7, giving myself one day off. I took the DC at the weekends but kept their weekly routine normal.

I made sure that my solicitor had very detailed instructions about what would happen with the DC if anything happened to me. Worst case, I was killed in a car crash en route to the hospital, DH would not have been able to care for the children. So family and even staff at their school were all part of my emergency plan (with their agreement).

Strangely, we got used to the life with DH not there but once he was back home, it was very tough. I think this is similar to your position now. Very very ill, almost had to be babysat, so my life shrank immeasurably. I couldn’t go out anymore as it’s not like I could get a babysitter for him and the DC! I resorted to having a friend over for a drink in the garden some evenings one dreadful summer… There were also the night wakings, help to the bathroom, administering medication at all hours and so we were both knackered. Getting ill scared me as there was no one else to keep the show on the road. You can’t help but become resentful because the world keeps turning for everyone else but you’re stuck in hell. Clearly no one would choose to be in this position, but you’re not ill and yet so deeply impacted.

Feel free to DM me.

Another poster mentioned PIP. I now remember we were referred to the Hospice and our assigned Nurse advised dh would be eligible for PIP, as his diagnosis was terminal. It may be worth checking on this? The Nurse submitted the application on his behalf and it was approved quickly. A main advantage of this was he was also able to get a Blue Badge which really helped as he couldn’t walk far and it meant we could still go out sometimes as we could then park more easily.

Thank you @thornbury I'm
sorry you’re going through this. DH is 45; it’s so hard for him.

@OneZanyCat thank you. He has a will and life insurance etc. I am conscious that’s finite though and want to keep most of the money for the children and their future.

@Myfridgeiscool thanks; we do have an employer assistance programme. I haven’t contacted them yet but may well do so, it’s finding the time as I am always surrounded by people!

@Offherrockingchair you’ve articulated well what life is like at the moment. It’s really difficult because I’m sort of trapped! I do need to think about what would happen to the children if I died or couldn’t look after them for any other reason: we haven’t really talked about it as it’s so painful and there isn’t really anybody suitable.

DH is almost certainly eligible for PIP; we’ve applied and I know it can be fast tracked if he’s got twelve months or less but we don’t know that yet, we may find out next week what the prognosis is.

Oh OP I have been in your shoes too and it’s utterly hideous.

if you can afford to get some help. I had a cleaner and a lady who came after school 3 days a week to help me out. The kids built a good relationship with her and it gave me some breathing space. She was also incredibly helpful once my DH died. The emotional toll on you is horrendous, I absolutely didn’t give up work. It gave me the space to be me and to get a break from cancer and have some normality in my life

The other thing I would say is regarding your DH treatment. Please find a centre of excellence for his cancer and get a second opinion. There may be trials which can help him and if he’s not in a specialist centre you’ll not be getting the most cutting edge opinions. Get copies of his scans and results. If you don’t have private cover it may be worth taking the scans to a specialist to review them - it will save time

Royal Marsden and The Christie are the main centres of excellence although you can also look at UCH Addenbrookes Southampton

DM me if you want to chat

Depending on the life insurance amount I would advise getting a wealth manager. I have amount I withdraw each year from the investments for the children so that they can do all the things they would have done with DH around so their standard of living isn’t affected: the capital is still growing even with the withdrawals.

Go to the gym, put the DC in the crèche, make the phone calls. I’d either make them in the car or ask if there’s a meeting space you can use.

I am so sorry @isthisaplum what a lot to be going through, the unknown is very hard to deal with so I hope that getting some clarity on prognosis will help you plan some normality into your everyday. It is hard to regulate your nervous system and be responsible for everyone else too. Definitely do anything within reason to reduce the daily grind workload to free up time to do stress reducing activities for you and the kids, you need to put into your own pot too, being a carer for kids, a very unwell DH and working is a lot.

Others have had many more suggestions, but I would also add that there is support out there for your children to help them and is is available at this stage not just after bereavement.

www.childbereavementuk.org/Pages/Category/child-bereavement-uk-support-services

So sorry my wording was wrong. I didn’t mean to suggest that your friends don’t want to help but you mentioned they didn’t know how. I totally understand that it’s the emotional weight of it all that weighs really heavily right now. And the uncertainty that is exhausting,

Personally I didn’t find MacMillan very helpful but I met others who did. Maybe your gp could you refer you for some talking therapy or you could find a private therapist to support you through this?

The practical help may not seem relevant now but it does become much more so later on. Also, I forgot to say having one friend coordinating the others is very helpful so you are not bombarded with multiple questions. Sending you strength.

My heart breaks for you. I've been through similar recently, although my children were adults.
My main piece of advice would be when things get really tough accept the carers that he is eligible for. We resisted but once they started (continuing care funding fast tracked by Macmillan) I was able to be a wife again rather than a carer & it made a huge difference to the last two weeks. The carers were angels.