Purgatory

[Overbrookanddale]

It really is, isn’t it?

DH has been suffering with unidentified pain in his hip for a few months, and it’s got steadily worse over the course of the year. Three weeks ago, he had an MRI which identified cancer in the hip bone. Further tests have established that he has a cancerous mass between his lungs, so the bone cancer is secondary.

That’s what we know. We don’t know the course of treatment or life expectancy or what’s likely to happen in the future. It is terminal as much as I can glean but does that mean weeks, months, years? He is in a lot of pain and on strong medication to manage that pain. So he’s tired and generally quite low (understandable.)

Meanwhile we have a five year old and a child on the cusp of turning three who know ‘daddy is poorly’ but not much beyond that. They forget; they try to climb on him, they knock his crutches over, they are loud and ever present. He’s struggling with them; I’m struggling with split loyalties between managing them and him and also the toll of doing absolutely everything has really got to me. I’ve been signed off work for a couple of weeks which has helped but I’ll have to go back eventually.

I don’t know whether to suggest to DH he stays at his parents for a bit, if he’d be more comfortable there? It’s so hard knowing what to do. I hate weekends at the moment as I feel I need to have the children out and about for all of it, and it’s exhausting. I’m dreading the summer holiday. I hate making DHs pain and suffering about me but it has impacted me and the children’s; how could it not?

Desperate to know more. It really does feel like purgatory

That’s absolutely rubbish, OP. I’m so sorry for you.

I guess you have to let your husband decide. You don’t want to think you’re pushing him out. Perhaps having the children looked after to give you both a break and time together would be better?

Oh love. How stressful for you. I can only offer my experience which is that my husband was diagnosed 2.5 years ago with lung as the primary and mets in various places elsewhere. Classed as stage 4. His is non small cell. They got him
on a treatment plan within a few weeks (some radiotherapy and then immuno therapy tablets). I genuinely thought he'd be dead within months, but he's still here and we've had holidays (very much adapted, but still...) and good times. Along with this obviously we've had terrible times - I thought he would steadily decline but it's not been like that, it's been very much ups and downs.

i think it will very much help you to know what his treatment plan will be. How does he feel about staying with his parents for a bit? Do you both want that?

Sending love and strength

I think you need to talk to Marie Curie and MacMillan Nurses. Could DHs parents help by taking him or the children out on a Saturday afternoon or , better still, could they take over from you so you could go out for a few hours? It doesn’t seem fair on anybody to ask him to move in with them.

Thank you.

Dhs parents aren’t local and while I know they’ll help, it’s not going to be weekly. He can’t really go out as such as he can’t walk far.

It is really hard. I don’t want to exclude him from his own home but I’m also worried about the children hurting him.

I can imagine that you are dreading the summer holidays. Are you able to sign DC1 up for some holiday camp days and is DC2 in Nursery or with a CM?

Sadly not! DD is in preschool and so term time only; ds isn’t currently in any holiday clubs but I’ll explore and see what’s available. I sent him to a sports one for one morning in February half term (it was meant to be for two) and he hated it so he’s a bit reluctant to try anything now!

That’s a shame in both counts. Around here they have the usual holiday spirts clubs but there is also the odd one that runs a bit more like the old holiday play schemes where they do a bit of everything.

i know that you probably don’t like asking for help but do you have any friends or family that could have them, even if it’s just for a couple of hours?

For instance could the DILS come down and stay nearby for a night or two? They could spend a bit of time with your DH and also take the DC out?

Oh my love, I am so very sorry to read this. Among my friends who have been diagnosed with stage 4 cancer they have survived four months (late diagnosis during Covid), 1 year, 2 years, 5 years and 6 years (Avastin available on private health plan.). These were bowel and liver cancers. So it varies hugely. I believe five-year survival rates for lung cancer can be less high, because lungs are so key to life.

Can the hospital team help with a prognosis and put you in touch with MacMillan and Marie Curie nurses?

Children that young will adapt…if the prognosis is bad all you can do is have counselling to try and equip you as well as possible to then be able to help the children. But having seen it, it’s better it happens when they’re young like this and move on and forget than as tweens or teens.

Big hugs xxxx

Thanks so much. Hoping we may find out more next week (mind you I hoped that last week as well.)

It’s so rare - a thymoma between his lungs; it does seem pretty aggressive but then treatment is really good these days. So he could have some years yet.

@ExplodingSmittens it isn’t that I don’t want help, I’d snatch it with both hands 😂 but actually getting it might be harder. PIL (I’m guessing you meant pil?) are lovely but I just don’t think they have the funds to be staying in hotels multiple times over the summer. They will come here and I there sometimes and it will be a very welcome break!

Sorry yes I did mean PILs.

I’m so sorry you are going through this 💐 I can understand how incredibly torn you feel. My husband was diagnosed with bowel cancer January 2025 and he died in the September of the same year. He was only 40 and our children were five and one. It’s a feeling of being torn in every direction and feeling like you can’t do a good enough job for anyone 😢 My husband also found the kids hard to deal with despite desperately wanting to spend time with them they were too much for him (especially the one year old).
I think how long your husband has will depend on his cancer so I don’t think anyone will be able to give you an answer except the doctor.
We ended up roping as much help in as possible from friends and family (I know how hard it is to ask but once we did, people really did want to help, I think people wished we’d asked sooner as they didn’t realise how bad the situation was). We also paid for all the childcare we could afford so we could both get a break. Don’t feel guilty about it, you need to be well to look after your husband. The children will be ok in childcare. We had a rota of family who would come round to help with the dinner, bed and bath routine with the kids as that was the most difficult time of day. It was also the time of day that my husband’s pain would start to get worse and we’d have to call the nurses out. I was signed off work with stress, my work encouraged me to do it.

One thing we regretted was not getting my husband into hospice sooner. While he was in there he was so much more comfortable than at home. And the kids could come and see him whenever they wanted, they gave us two adjoining rooms and one was a playroom for the kids. He had pain meds on request without having a long wait for the community nurse. Because all those factors were taken care of we were able to spend quality time together at the hospice. Genuinely once he was there he said he felt like he was on holiday. I would go up there in the evening and drink wine, and I was allowed to sleep over with the kids if I wanted to (tbh I left them at home with my family).

There is a great charity called Winston’s Wish, with advice about how to talk to children about illness, death and dying in an age appropriate way. I found their resources incredibly helpful.

I hope the doctors can shed some more light soon and I’m happy to talk if you need to. Just don’t suffer this alone if you can help it 💐

I wanted to add as well, Cancer Relief were a really helpful charity (I’m not in the UK so I’m not sure if this will apply to you). They paid for our electricity bill, doctor’s bills and a small portion of our nursery fees. Macmillan I’m sure is great if you have no kids or you are an age where your dependents have grown up, but we didn’t have time for all their support groups etc with two young children so they were no use to us!

@putitonthewrongway thank you so much for your reply and I feel such a connection to you! I don’t know anyone else who has experienced this with such young children.

You’ve got some amazing advice there. I know DH finds the children hard to manage, especially the toddler: she forgets and climbs on him and it hurts him a lot, they both keep knocking his crutches over.

I didn’t realise we could claim PIP which will help as keeping them out of the house is so expensive (and tiring!)

@OverbrookanddaleI’m glad it’s helpful, my heart breaks for you. It must be really tricky with a 3 year old especially as they understand daddy is poorly but probably don’t quite grasp the concept of how serious it is. My eldest would often forget and start climbing on my late husband. He was so gutted he couldn’t play with them anymore. Sadly, our then one year old (now two), didn’t really develop the connection with him that he had with our eldest as he just couldn’t handle her bouncing all over him.

One of the things my daughter remembers is we had a “picnic” with daddy in the bedroom when he couldn’t get out of bed. We put blankets on the floor, ate snacks and watched Wallace and Grommit. The fact that we sat on the floor stopped her jumping on him. It’s the small things that they remember the most. I also wish we’d taken more videos of him. He wasn’t the type to record video messages for the kids (just showed his love in other ways).

I hope your husband can get his pain under control and he can be comfortable. And if you need anyone to talk to I am always on Mumsnet!

I’m so sorry OP, this must be a nightmare for you.

Do you/DH have many friends locally? So many people just don’t know what to do to help in this situation, and would be more than happy to step up and help with the dc if you asked them. Even if it’s just one of them going on a play date for the afternoon with someone from nursery/school it can take some pressure off.

There’s a little here hereOverbrook on benefits which may be available and some grants.

I know that you haven’t been told how long your DH has, and I know from experience that those estimates can vary wildly from what actually happens as one relative of ours was given a very short expectancy and lived for over 4 years.

Anyway, what I’m trying to say is that if the Doctors do say that it’s 12 months or less talk to them about PIP as they can provide proof and then PIP will be automatically granted.

We spoke to a support worker based at the cancer unit and they applied for a blue badge on my relative’s behalf. One of those might be useful if you, or one of DH’s friends want to take him out or he has appointments?

Thank you. @putitonthewrongway - as much as I wouldn’t wish this on anyone it is really helpful to talk to someone who has experienced the same.

DH is quite a high earner but we have to be cautious; however obviously PIP would pay for things like a cleaner (if I can find one) and so on. I’m managing at the moment but it’s because I’m not in work and I’m aware it’s not a permanent solution.

Friends have been very helpful but realistically there’s only so much people can do.

Pip isn’t means tested so that’s at least 2 things you can apply for now, PIP and a Blue Badge

I had a similar cancer to your DH. A mediastinal germ cell tumour. Incredibly rare in a woman. Sitting in the space between lungs in the mediastinum. I’m so sorry you are all going through this. When you get diagnosed with a rare cancer it can feel very lonely. I had nobody to share experience or advice with.

Is his breathing ok? Have the doctors said if the tumour is pressing on anything?

Do you have a good family and friends support network nearby? Ask for help. Ask the school mums if they can have your five year old for days in the summer holidays. They will rally round. If the weather is nice can you separate the children and your DH between the house and the garden. Your DH can dose or read while kids in house. Kids out in garden while he rests or watches tv etc indoors.

I can’t stress this enough: ask for help. From family, friends, school mums, neighbours. In general people do step up. I had people who I didn’t know very well who volunteered to clean my house and bring home cooked food. Can DH’s mum come and stay for the next few weeks?

Don’t plod on just the two of you. Apply for PIP asap. It will almost certainly be given and will be backdated to the date you apply. Give as much detail as you possibly can.

Sending you much love and strength.

@RobogobI hope you are making a good recovery from your cancer, I can imagine it must have been scary with it being so rare 💐

This is good advice. I think you are right in that people will want to rally round. Sometimes people want to help but they don’t know what you need and it’s best to be specific.

@Overbrookanddalesorry I hope you don’t mind that I keep coming back to your thread it just resonates with me and I really wish I could help! I hope your day has been manageable x

I don’t mind in the slightest; I really appreciate it. It’s awful here - I feel so sorry for DH but it’s hard for the children too. Yesterday we came in and DD was crying about something and I had to get ds in the shower and when I came down she was still just crying and DH on his laptop … no attempt to comfort her or engage with her. I wonder if it’s a way of detaching. But it makes me so sad. Already they just aren’t going to DH but coming to me.

We did DHs PIP application and to be honest I can’t see that he wouldn’t get it; he can barely walk.

Hopefully more answers tomorrow but as @Robogob has said it’s such a rare cancer I am not sure they know quite what they’re dealing with.

Doing the PIP application can be brutal can’t it?

For PIP my advice is put as much detail as possible, even if you think something is barely significant. Stick it down.

Hi again OP, I’ve noticed that you’ve said that your DH can’t walk, do you have a wheelchair?

I managed to get one for my DA for £40 from our local charity shop. Maybe you could put a call out amongst family and friends, sometimes people have these things lying around.

How are you today? I can’t imaging the heat is helping but I suppose it’s easier to keep the DC entertained in the garden?

He can’t walk for any length of time but he can walk short distances with crutches. I think he’d be really distressed to have a wheelchair to be honest although we may have to consider one as things continue.

He has an appointment today so (again!) hoping for some more answers.