Please or to access all these features

Life-limiting illness

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Husband now terminal

999 replies

Nifflerbowtruckle · 03/10/2017 19:19

My 31 year old husband has been today diagnosed as terminal. His cancer which had gone in July has come back rapidly and now there is nothing they can do Sad. How do you move on from here? We had his sperm frozen to hopefully try ivf but he won't even be alive to try that.

I'm so utterly heartbroken Sad

OP posts:
Thread gallery
6
PointlessUsername · 18/10/2017 01:32

Really sorry.

Thinking of you both x

oldlaundbooth · 18/10/2017 01:40

Massive hugs niffler.

I have no advice really other than to say you're in my thoughts. And please do whatever you can to keep your DH happy in his home - don't move, it's too much.

Your dog is gorgeous btw.

Willowkins · 18/10/2017 02:19

I've been following your thread. I'm so sorry you're going through this. Good that the pain meds are sorted out and I hope MacMillans are helping with the paperwork. I can kind of understand where your MIL is coming from. It's her son and she wants to be useful. Maybe give her something to do as a distraction technique? 'Mr Niffler was asking if you could ... what? Write some letters, bake some cupcakes, find his music? Just a thought. The main thing is that you are doing a brilliant job of protecting caring for your DH.FlowersGin

Strokethefurrywall · 18/10/2017 02:23

I'm so sorry OP - your husbands story is so similar to that of my darling brother and his wife.
He was diagnosed in March 2011 with what we thought was leukemia but after much investigation at the amazing royal marsden, we discovered it was a testicular germ cell cancer.
It had killed off the original tumor but not before secondaries had started to grow in his lymph and lower spine.
He underwent immensely aggressive chemo and radiation which did relatively little to halt its progress. He then went on 2 clinical trials before deciding to stop treatment and enjoy the rest of his time with his family and beloved wife. He passed away 8 weeks after stopping treatment and only 14 months after diagnosis - he was 28.
I won't offer any platitudes of hope because, as you know, there is no hope at this point. You already know that this year is going to be shit. Completely and utterly, harrowingly shit.
But I do know that you need to take one day at a time. Try and do one thing each day that makes you both smile, a walk in the park (my brother was wheelchair bound at the end but loved getting outside), hang out with friends, take photos of him with your dog, give him any food he enjoys. The smallest joys will help. Let your DH dictate the terms of his passing in relation to funeral arrangements - my brother was adamant that he wanted a humanist ceremony and where his ashes were to be scattered. He suggested music that he loved (he was a musician) - this was his way to retain a small amount of control over something so out of his control.
My darling sister in law is now 5 years in from his death. It has been a very long slow and difficult process, as grief always is.

Visually, i picture my brothers death as a massive raw, gaping black hole in my life. For a very long time, the hole was ragged, it left me weeping with the pain of loss. Over time, the hole was still there but the edges were less raw, they only bled occasionally. I've filled that hole with wonderful things, my children, I've filled it with things and experiences that I know would make him immensely proud of me.
The brother shaped hole in my life, it is still there, large as ever - but it's no longer raw nor does it hurt to touch. It will never close up, but it no longer fills me with dread to think about. I have no idea if this analogy will help, it did for me after he died.

I also can't stress to you the wonderful work of the Macmillan nurses. They were fantastic for my family. I live overseas so had my own grief counsellor. Talking about everything really helped me.

Try not to be too harsh with his parents ( especially his mum) - my mum behaved similarly in that she would fuss around my brother (they lived close by to him and his wife) but tried very hard not to. But it's because she felt totally and utterly helpless and lost and completely unable to protect her baby. I have a very close family and would gently remind my mum to back off a little (when word got over the grapevine to me that she was fussing). But I'm the mother of 2 children now and I understand why she behaved that way. It doesn't make it right but I understand she was trying to help the only way she could.

Please know that you can pm me any time, to rant and scream.

Nifflerbowtruckle · 18/10/2017 11:22

Thank you all

I understand why his mum is behaving the way she is I genuinely do which is why I haven’t really said anything. I don’t think she’d like the job thing as it would reinforce what is going on in her mind. She cared for her mum before she passed from cancer and I think she sort of expects that it will be exactly like that. I had to explain yesterday that I’m not caring for my DH. At the minute I give him meds during the day (he sorts them on a night) and I give him drink and food but then he just does his own thing. He’s still safe to be left home alone he doesn’t need that level of care and I think she just assumed it must be different even though she’s spent a few nights here.

My DH sent a message last night saying how amazing his brother is being and how he’s handling it brilliantly and they finally got it and told his brother that they will act normally as that is what DH wants. When he and his brother were laughing and joking she kept shooting his brother dirty looks which obviously doesn’t help.

We’ve already discussed funeral, we had discussed it briefly when he was first diagnosed but he has clarified what he wants and written it down. He’s also written his brother a letter and we’ve arranged some final gifts for them all. I’ve taken his fingerprint to put on a keyring for his parents.

The poor dog has also been unwell which I think is partly due to stress. She’s my Little Rock though.

OP posts:
Nifflerbowtruckle · 22/10/2017 21:27

My DH is having a bad day today Sad. I’m becoming quite afraid that this will end much sooner than expected and a lot sooner than I am ready for, although I don’t think I’ll ever be ready. His bad days and good days seem to be fairly even at the minute but with every bad day the end is getting closer.

OP posts:
sadie9 · 22/10/2017 23:22

Sorry to hear it was a tougher than usual day today. It's like a fairly unpleasant roller coaster ride. We had it with my brother. The bad days are very scary and then things go back to 'normal', then something else happens again just when you are thinking things have settled a bit...it's literally one thing after another. Flowers

Nifflerbowtruckle · 22/10/2017 23:31

I think I just have a permanent low level fear of the end coming now. We met when I was 17 and he was my first love and we’ve really grown and matured together. I’m afraid of being alone and afraid of meeting someone. He got a little emotional at a picture of the dog sat on his brothers knee and said that she had found someone to replace him (she hasn’t). He said he doesn’t want me to be alone but I don’t know that anyone could ever measure up. I know it’s not even something that I should be thinking about now I’m just scared for the future I guess.

OP posts:
underthebluemoon · 22/10/2017 23:37

Flowers Flowers

MomToWedThorFriday · 22/10/2017 23:46

I’m so sorry, Niffler Flowers Cancer is an utter cunt.

Pipsqueak11 · 22/10/2017 23:56

So sorry Niffier - thinking of you both. Cancer is such a bastard.

C0untDucku1a · 23/10/2017 00:03

So sorry x

Ts27 · 24/10/2017 21:36

Gosh I'm so so sorry to hear that you and your DH are going through this.

I hope you're ok. Flowers

BonApp · 25/10/2017 06:32

niffler slightly different but my dad is about half way in to a 6 month prognosis and though that's totally different to him being my husband, I get a lot of how you feel. And can see that my stepmum is scared for her future and she's in her early 60s so it must be doubly daunting 30 years earlier.

The "no hope" thing is so sad, frustrating and heartbreaking. I get it. Someone recently said to me "you've just got to hope for the best" - what best? There is no best. None of this is best.

My heart goes out to you.

Notanumberuser · 25/10/2017 06:36
Flowers
Waspyhell · 25/10/2017 06:54

Niffler I just wanted to send you Flowers. I can't imagine what you're going through together. You sound amazingly strong though- although I imagine you don't feel like you are. You describe your approach to caring for your dh as being all about what he wants and needs- I can't honestly imagine a better approach to take.

Take care of yourself along the way and I hope you're getting some genuine and useful support for you too in real life.

Namethecat · 25/10/2017 07:10

My thoughts are with you both. Be kind to yourself, remember to eat and drink as you need to keep your strength. See if your local hospice offer a nurse for overnight care for a few nights a week as you need your sleep also.

PosiePootlePerkins · 25/10/2017 07:47
Flowers
MudCity · 25/10/2017 07:56

So sorry to read your posts. Stay living where you love.

Beautiful dog. Big hug for her too.

Flowers for you all.

weebarra · 25/10/2017 07:59

I’m so sorry Niffler. Nothing I can say at all. Lots of people I have known have been through this and I’m in remission myself.
I have a close friend who was in a very similar situation to you. Her husband was 31 when he died and they’d been together since uni, no kids.
Eight years later and she’s still mourning his loss and what they could have had. But, she is generally happy. She took time off to go travelling after he died and she is with someone else now.
She will always miss him but she is living her life and she can talk about him now. She was also a huge support for me because she knows what it’s like.

ShesAStar · 25/10/2017 08:04

I'm so sorry OP, thinking of you and your DH. You don't have to think about the future if you don't want to, sometimes it's more upsetting to imagine it than to live through it. I'm so glad you have your lovely little dog, she's beautiful. X

MrsMozart · 25/10/2017 08:55

Thinking of you both xx

loobylou10 · 25/10/2017 09:04

Thinking of you both Flowers

Nifflerbowtruckle · 25/10/2017 10:50

Thank you all some of what you said really helped. In real life I’m generally holding it together. You kind of have to bury it deep inside you otherwise you’ll be a useless heap on the floor. He’s not quite at the level of hospice care yet but a couple of days ago we thought the end was very near. He’s picked up a little since I’ve got him some complan.

We sorted out a wheelchair for him and went around the block (he got motion sickness Hmm) also dropped kerbs that aren’t actually dropped to the road are a pain I think that may be a campaign I start. It was hard enough pushing someone I can’t imagine being self propelled.

OP posts:
MrsMozart · 25/10/2017 17:14

Good that you've had a couple of good days and got the wheelchair. I agree those 'not-so-dropped dropped kerbs' really are a pain!

Please create an account

To comment on this thread you need to create a Mumsnet account.

This thread is closed and is no longer accepting replies. Click here to start a new thread.