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Husband now terminal

(50 Posts)
Nifflerbowtruckle Tue 03-Oct-17 19:19:17

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

RaininSummer Tue 03-Oct-17 19:26:07

Oh my what horrible news. I have no advice or wise words, I am sure others will soon, but I couldn't say nothing. He is too bloody young. Very unfair.

Chasingsquirrels Tue 03-Oct-17 19:35:14

Nifflerbowtruckle I'm so sorry to read this.

You get through it minutes by hour by day - there is no other way.

You haven't said how your husband is at the moment in terms of health - but try make the most of the time you have left.

People told me to live on the moment - I couldn't understand that, the moment was rubbish, why would I want to live there. But the point it in actual "moments" rather than this period of your life.

And if you want it, there will be posters here on mumsnet who will be there to virtually hold your hand along the way.

Nifflerbowtruckle Tue 03-Oct-17 19:40:35

Thank you chasing at the minute he's in a lot of pain but we are hoping with regular doses of oramorph we can control it and get out and about. He wanted to save money for me for when he's gone but I said I would rather have the memories so we will be aiming for that.

MyGuideJools Wed 04-Oct-17 08:00:00

No words to help, but lots of sympathy, such a sad time for you. There are lots of lovely mnetters who have been through the nightmare you are living now, keep posting for support. ⚘⚘

Chasingsquirrels Wed 04-Oct-17 08:33:00

Thinking of you Nifflerbowtruckle.
I'm assuming his medical team is on the ball really pain relief - if they aren't then get onto them about this.
Are you being referred to the GP team and the local hospice? Both may be more help at later stages than the hospital consultants.
And then support for YOU, is there a Maggie's Wallace near to you, or other drop ins. You might not need or want them, but they will hopefully be there if you do. They can also help you look at whether you are claiming everything you can - once terminal you should be able to claim PIP almost immediately which will signpost you for other benefits if relevant.

Nifflerbowtruckle Wed 04-Oct-17 09:21:08

His consultant has now transferred his main medical treatment over to gp we have an appointment today. We are 1hr 30 mins from his treating hospital so they don't want us in for appointments for no reason but we can call at any time.

There was a maggies at his hospital but there isn't one close by. He's on a clinical trials waiting list but his cancer has already proven to be drug resistant and because it's testicular cancer there are only early phase trials possibly available. Basically it would be a miracle if he gets on a trial and it actually did something.

We have a lot to think about since it's just the two of us and we live 3 hours away from all of our family. It's difficult because we love it here but we have no support and in an emergency his family are so far away.

We are already claiming pip since he was diagnosed over a year ago (although everyone expected he would be cured) but we only started getting it recently. We need to ring them and chase through carers allowance.

Chasingsquirrels Wed 04-Oct-17 15:38:53

I hope the appointment today was helpful.
There isn't really very much we can say to help, but for me when I was going through this just knowing that there was somewhere I could have my own outlet helped, and still is helping.

Nifflerbowtruckle Wed 04-Oct-17 18:47:03

The appointment went okay he was changed to a long lasting morphine tablet with oramorph too ups. It was mainly getting on the radar I think. I'm having to bath the dog at the minute because she came home from daycare looking like she'd had a mud bath so that's taking my mind off it a little.

Amber0685 Wed 04-Oct-17 18:57:53

So sorry to hear this op. Have you given up work to care for him? Do both your families live close together? It is early days now but could you consider renting your house if you own it and moving closer to family? I hope the medication change is helping with the pain. Good to hear you have a dog, what sort?

Chasingsquirrels Wed 04-Oct-17 19:03:43

DH had the morphine slow release capsules, with the option to take oramorph as an extra. That worked well for him.

What sort of dog have you got?

Nifflerbowtruckle Wed 04-Oct-17 19:06:08

We moved to a new city 3 years ago. I got a job about 6 weeks before he was diagnosed and then was let go after 6 months, my focus just wasn't on the job. We rent 3 hours from our families.

This is my dog, she'll be the only thing to keep me going when this is all over.

Bicyclethief Wed 04-Oct-17 19:07:14

I'm sorry to hear your bad news. As someone had already said, take it by each hour. Thoughts with you and your partner.

Iloveantiques Wed 04-Oct-17 19:09:25

I’m sorry.

If neither of you are working would it make sense to move back near to relatives? I appreciate it’s not easy, or cheap, to up sticks but you might need the support.

Are you getting help with the rent through housing Benefit? Make sure the PIP unit know there’s a change in prognosis. Does he get ESA as well? Make sure they know.

ElizaDontlittle Wed 04-Oct-17 19:09:40

I'm so sorry Niffler
This organisation www.willowfoundation.org.uk/
might be a help.

Also I'd take early referral to the hospice team as they do sooo much more than the very end of life care.

Nifflerbowtruckle Wed 04-Oct-17 19:14:03

His work have paid him full pay for over a year so we've only just claimed pip (we didn't know we was eligible) and we don't currently get any other benefits. We'll be ringing pip to let them know and chase through carers. Moving home is an option and we have briefly discussed it it's just really hard because we utterly love the city we now live in. We like our neighbors, the vet, groomer and daycare for the dog. It's hard to know what option is best for us.

Littleelffriend Wed 04-Oct-17 19:14:43

I'm so sorry Niffler . Agree with pp can you move back closer to family? Sending hugs your way x

Nifflerbowtruckle Wed 04-Oct-17 19:15:49

Thank you for that link Eliza that is definitely something I will look into

Willowkins Wed 04-Oct-17 19:26:41

So sorry to hear this Niffler. Such awful news and so much to take in. We're here with handholds and hugs.

leedspirate Wed 04-Oct-17 19:34:20

I'm so sorry wineflowers take care of yourself x

Imissmyboy Wed 04-Oct-17 19:35:14

So sorry to hear this. I know every case is different, but my friend was diagnosed with secondary cancer 4 years ago and was told it was terminal. She is still here with us and is living life to the full. Yes, she is in constant pain and on chemo every 3 weeks, but you wouldn't know it to see her happy and healthy looking.
Hugs for you and your husband x

Nifflerbowtruckle Wed 04-Oct-17 19:41:56

Unfortunately there is no chance for my DH he has had the strongest chemo for testicular cancer and it didn't work he also had radiotherapy when he didn't technically need it in order to destroy any individual cells. It's proven to be drug resistant so he is off all treatment at the minute. The only chance would be a miracle that he gets on a clinical trial and it somehow works but that would only be looking at time over cure and it really would be a miracle.

MyPatronusIsABadger Mon 09-Oct-17 21:13:53

I'm so sorry Niffler, my DH also has terminal cancer and it is really hard.

Have you seen the Dr for you? I've been given anti depressants which helped a little at first. I've put my name forward for counselling too.

Maybe those things could help you too?

Sending a big virtual hug to you both (and from my dog to yours too!)x

Nifflerbowtruckle Tue 10-Oct-17 10:06:39

I haven’t seen the doctor for me. I’m doing a little better the past couple of days. I think counselling will be something I will access at some point.

The part I’m finding hardest is that we’ll never have children together. Even if I have ivf after he passes he’ll never be a dad and that was something he really really wanted.

Nifflerbowtruckle Tue 10-Oct-17 10:07:27

Thank you for the dog hugs, my dog has definitely sensed something the past few weeks she spends most of her time sitting with or near him.

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