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Life-limiting illness

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Original poster

My niece nearly broke me today.

90 replies

Staywithme · 19/02/2015 00:45

I've been just about holding it together for the last two years but my niece started crying over my husband today and I thought I was going to break. He was diagnosed with terminal cancer two years ago and I'm trying to hold it together for my quirky little family. My family consists of my husband, two nephews and my wee niece who came to live with us 3 months ago. They're siblings.
We found out three weeks ago that all the meds that he was on to slow down the spread have stooped working so now it's racing through him. According to the consultant it's one of the most aggressive forms of prostate cancer he's ever seen and my poor beautiful husband has it. It's not fucking fair.
My wee niece was kept from us for four years and now that she's home she's going to lose him. She's 19 and has SN and she has to go through this and my boys have to go through this after all they've suffered in their young lives and their bastard parents go on looking after number one. I could scream. Fuck fuck fuck. This is hard. Sorry. I'm rambling. Don't even know why I'm posting. I just need to of load.

OP posts:

Original poster

Staywithme · 19/02/2015 00:47

Fuck it. I've been hiding from life in mumsnet and can't kid myself any longer. I don't care if no one answers I'm falling apart.

OP posts:

thornrose · 19/02/2015 00:48

Oh bloody hell, you poor thing! That's so unfair.

Glastokitty · 19/02/2015 00:49

I have nothing helpful to say, but you are in my thoughts. Im so sorry this is happening to you.

Snapespotions · 19/02/2015 00:51

I'm so sorry, OP. Is your DH at home or in hospital?

DancingDinosaur · 19/02/2015 00:54

I'm sorry. It is bloody stupidly ridiculously hard. My husband also has terminal cancer and we don't have a whole lot of time left either. We have small children who are struggling to come to terms with that fact. Its ok to scream shout and get angry. In fact you absolutely need to do that. Its a huge part of the shitty process. I need to go to bed in a minute as I've got to be up for work, but I'm more than happy to come back tomorrow and chat. Big hugs to you.

Original poster

Staywithme · 19/02/2015 00:56

Thank you. Hes in the hospice and I had to go over with him to the hospital today for an MRI as they had some concerns. The cancer is all through his bones, which we've known since his very late diagnosis but now it's putting pressure on his spinal cord so he's getting radiotherapy to try to shrink it. Otherwise he's into a wheelchair. If you saw his scans then saw him up walking with a rolator you'd be gobsmacked, as are most of the medical people that deal with him. He was crying today because he was worried about leaving us behind. That's hard.

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MoJangled · 19/02/2015 00:57

You're going through dreadful times. Is there someone in RL who can go through it by your side? I'm so sorry that you and your DH have to endure this. Maybe you could find a way to do your crying and screaming and shouting fuck fuck fuck? Being strong for everyone else all the time might not be the best thing for you?

DancingDinosaur · 19/02/2015 01:00

That is hard. How are you bearing up when you're with him? I guess for me I try and do the practical thing so that I can make it easier for my dh, but I don't know if thats really the right way forward. Theres no handbook for this stuff.

Original poster

Staywithme · 19/02/2015 01:00

Thank you Dancing. You think you can imagine what it would be like but nothing prepares you for the gut rencing fear and the physical pain you feel when you have to deal with it for real. I'm so sorry for you.
Fuck it, I was an auxiliary for over 20 years and used to be told I showed great empathy with my patients. I was kidding myself. I had no bloody idea what they or their families were going through.

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Snapespotions · 19/02/2015 01:02

Of course, it's unbearably hard for all of you, OP. You are doing incredibly well trying to keep it together for your nephews and your niece, and probably for your DH too, but nobody can be strong all of the time. Do you have good support in RL?

Hugs to both you and Dancing Dinosaur. Nobody should have to deal with what you're both facing right now.

DancingDinosaur · 19/02/2015 01:03

I know mate. Really, people can try, but no one really knows until they're facing the sheer gut wrenching horror of it all.

Original poster

Staywithme · 19/02/2015 01:31

I've finally asked for practical help from his siblings, such as going to visit him more often while he's in the hospice. It's the first time, though they've always offered to help. I'm NC with my shitty family and I know it sounds like a cliche but he really did save me from myself. It took me years to feel comfortable with his family because they're so close and I wasn't used to that. They're a large family and really lovely. I'm just not used to asking for help. I sobbing my heart out here but I think if I opened up to someone in RL I'd fall apart and I can't do that.

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DancingDinosaur · 19/02/2015 01:48

Awww, glad you're back. I kept trying to get back on to mn and it wouldn't let me. I wasn't sure if the site was playing up or it was my internet. But didn't want to leave without at least saying goodnight.

Its not a cliche at all, he's your husband. And it is hard to ask for help, and sometimes the help feels a bit overwhelming too. I know what you mean about talking about it too much in rl as well. I guess its a need to stay strong and in control. Ok, I have to go or I'll be no good for work in the morning. I just wanted to make contact before I disappeared. I'll come back tomorrow and see how you're getting on if you're on here. Stay strong, but shout and scream too. You're not on your own in that one. Night night.

CawCanny · 19/02/2015 01:48

I've no words that can help, just didn't want to read and run, you sound incredibly brave.
How horribly unfair on you and your neice and nephews.
I hope you have someone looking out for you as you have done for them.
And Dinosaur too
What strong ladies you are to deal with such heartache

Original poster

Staywithme · 19/02/2015 01:52

Thank you dancing. I kept getting bad gateway. I hope you sleep tonight.
Thank you CawCanny.
I think Dancing will probably agree with me that we're not strong, but just good at putting a face on.

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DancingDinosaur · 19/02/2015 01:55

You're right there staywithwith. Absolutely. Ok, I'm really going now. Hopefully catch up with you tomorrow.

DancingDinosaur · 19/02/2015 01:55

Hope you sleep well too.

Original poster

Staywithme · 19/02/2015 01:58

I do feel a bit better after that good cry and venting on here. Thank you so much, all of you, for giving your support. I get so lonely at times. I have my nephews and niece, in laws and friends but I don't tend to wear my heart on my sleeve. My DH was the one that I always opened up to and I don't know what I'm going to do without I him.
The hospice staff are amazing but the doctor told me today that I should do something nice for my husband on his birthday, next week. That hit like a sledge hammer because I know he won't be here for his next birthday.

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QOD · 19/02/2015 03:50

Stay withme that's so sad
How old are your nephews?
Take all the support you can

IDismyname · 19/02/2015 04:11

Does the hospice offer any counselling? It sounds like you need to vent to someone outside the family circle without any come back.

You sound like an incredible lady.

Original poster

Staywithme · 19/02/2015 17:51

I just wanted to thank all you lovely people who helped me last night when I was having a bit of a meltdown. I read over that and am quite shocked at my own outpourings and TBH a bit embarrassed. DH had radiotherapy today and I've just left him at the hospice. I'm exhausted but feel better than yesterday. Thank you all.

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MetallicBeige · 19/02/2015 17:58

Please don't be embarrassed, I know I'm a bit late to your thread. You have every right to come on here and scream and shout and sound off, if it helps do it. There will always be somebody around to hand hold, back pat or give you a manly shoulder punch - whatever you need.

I know it's a cliche but please try to look after you too, I am so sorry for the shitty hand you have been dealt.

Bluepants · 19/02/2015 17:58

You must not be at all embarrassed. Supporting/seeing someone you love with cancer is utterly gruelling and you are doing brilliantly even to write a post.

DancingDinosaur · 19/02/2015 18:22

There is absolutely nothing to be embarrassed about. Glad you feel a bit better today. It really helps to have a good rant.

Original poster

Staywithme · 19/02/2015 18:25

I think if I hadn't churned out my distress least night i couldn't have got through today. DH has had radiotherapy before to control the pain and because it's a larger than usual dose given as a one off, he's in agony for a few days. There is a risk this time he could end up paralysed from the waist down, but if he isn't treated it's going to happen soon anyway. I think it's finally hitting his siblings as there's been a lot of tears. I was talking to the radiotherapy consultant today and he was saying the scan showed a huge increase in affected areas. I still find myself in shock at times, thinking this can't be happening.

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