Husband (31) incurable cancer, what do I do?

Hi emma1120

just spotted your post so please accept my apologies that no one has replied to you sooner. So sorry to hear about your husband and everything you are going through. You're right- it's all so unfair.

My own journey with my husband is different. He was diagnosed with a terminal brain tumour in Sept 2020. He was 51 at the time and a total fitness freak/marathon runner. Our kids are older too (21 and 23). 

Nothing prepares you for hearing the word "incurable". It rocks your world to its very core. I've come to think of the timelines as guidelines. They're not set in stone. Ours have changed three times so far and to be honest, we've stopped asking how long my husband has. We just take each step as it comes. He's almost at the end of the last timeline they gave us last year and is still running 50 plus miles a week - go figure!

As for how best you can support your husband, I'd strongly suggest being led by what they want or need. Right at the start of our journey, I promised my husband I would support him to the bitter end even if I didn't agree with the decisions he was making. Basically that's what I've done. He's fiercely independent and in the first few months would do anything to hold onto that control and independence. There were occasions when he didn't want me to accompany him to appointments. That kind of came back to bite him after he confessed he was binning his steroids and then confessed he didn't understand why he was taking them. Men! His condition has left him mentally impaired so he is easily confused and struggles to understand fresh information so he finally accepted that I needed to be there at the appointments.

Remember too that MacMillan are there for both of you. Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available. We also have our Ask an Expert section, for any technical/medical questions you may have but do allow two to three working days for replies from our expert team.

For what its worth, my own husband declined all offers to speak to someone. His way of dealing with things was initially to go for long walks alone and then when he was recovered from his surgery and treatment to start running again. That's his coping mechanism. We all cope differently with this journey. Please try to make time for yourself too. "Me time" is really important to keep you going. I appreciate you have a  young daughter but do try to take time to yourself, even if its only popping her in the pram and going for walk or a coffee catch up with friends. Personally I find journaling helps me too. Once you see those words in black and white sometimes they don't seem quite so scary.

I hope this has helped in some small way. This group plus Carers only forum - Macmillan Online Community have been a great source of support for me. There's always someone there who "gets it" and is on hand to offer a virtual hug.

Stay strong. Stay positive. Sending you a huge virtual hug.

love n hugs

Wee Me xx

Hi Emma, I am so sorry to hear about all that you are dealing with. It is a lot, and you have every right to be angry.

I would also recommend Maggies, as a place you can drop in any time for some rest and reflection and a chat. Unfortunately, I don't think they have a centre at Guys. Finally, there is a charity called Shine Cancer Support for young adults with cancer, and they might be a good contact if you think your husband would like to be in touch with someone who has also been in this situation at such a young age.

Take care and God bless. Creina

I’ve just read your reply to Emma and found great comfort in your words. My husband was diagnosed with terminal pancreatic cancer just over 6 months ago and I’m still in a state of shock. I’m utterly terrified of the future for him and myself. I feel like I’m helpless in a fast flowing stream…

Thanks, Suzi_W.  Facing the future is a scary feeling. I was talking to my daughter earlier and she said she feel's like she's falling down a deep hole and can't reach anything to grab onto and can't find her feet. It made perfect sense to me. Take things one day at a time, one step at a time. On the rough days, one hour at a time. You'll get through it - we'll get through it and we'll just need to see where we land.

Stay strong. You're doing way better than you think you are.

love n hugs

Wee Me xx

Hi Emma and everyone here battling this hell.

Hoping you and your husband found some support?  Any support?  This is my first time reaching out.  There hasn't been the time.  And also it's too hard to admit the reality of the situation.  I'm 38 and my husband of 2 years has very advanced very aggressive melanoma which is of course not responding to any treatment.  Why does it have to be so aggressive!  They have sent him home for palliative chemo after 3 months in hospital.  I now care for him at home while trying to look after our beautiful 5 year old daughter.  This is too much.  How do I even begin to do that?  To live with our reality.  Her reality.  His reality.  My reality.  

11 months of non stop hell.  Why did it have to be stage 4 when they found it.  Why did it have to be unknown primary.  Why did it take them so long to work out what it was.  And why were all of the best treatment options not suitable for him.  The worst combination.  He's been amazing throughout though!  The things he's been through.  I'm incredibly proud of him.  We've been so positive and strong all this time.  We still are.  Thankfully we have amazing friends and family.

Can't stop feeling guilty though.  Like there's something I could have done or should have done to prevent this from happening.  Are we being punished.  Did we make some wrong decisions somewhere?  People keep telling me not to think like that but I can't help it. We moved abroad.  If we'd just stayed home in London...Maybe he wouldn't have gotten ill or maybe they'd have caught it earlier?  We'd have come back to London sooner if it wasn't for Covid.  We're here now.  Our life in complete ruins.  No secure roof over our heads and zero money on top.  Yuck

Sorry to be so down in the dumps.  But I am really very much down in the dumps.

Feeling our collective screams

Dear Zero5, I'm sorry no one replied to your post sooner and I don't know what to say other than, yes, it's sh*t. 

You shouldn't feel guilty. There is no point. My husband had a tickly cough for 6 months before his swallow failed, did I make him go to the doctor? No. (I couldn't have anyway). Once his swallow failed and he ended up in A&E (almost exactly a year ago), did it send alarm bells ringing? No. The doctors were only interested in was knowing if he had Covid or not, and referring him for further tests, even though an inability to swallow is a known sign of advanced throat cancer.  There are so many 'What ifs' but we are where we are, and dealing with the here and now is more than enough.

I'm so sorry to hear things are so hard for you. You do have a very hard road to go down. But you are doing it, you are walking that road. And this phase will end. I know it sounds heartless, but I allow myself to take comfort in the fact that I am not dying, my daughter is not dying. We will live through this and there will be happy times again. 

Cherish every moment of joy you have with your husband. Great that he is able to be strong and positive. And cherish the friends and family you have around you - you're doing a great job.

Take care, take care of yourself,

Creina

Hello to everyone here.

How are you all doing today?

Thank you Creina for your kind and comforting words. And thank you for hearing me out.  I really needed this space to be honest about my feelings.   Thank you everyone for sharing your stories.  It helps to know that we're not alone don't you think?

Yes we're all doing it aren't we...Walking that road as we must.  And yes to take moments of rest and appreciation along the way is also a must.  To fully experience the strength of love and potential for joy that are especially intensified along this difficult journey.  

Love to and from strangers along the way is a powerful and magical force to behold too.  It can be so surprising.  Sometimes talking with strangers is much easier as we're more likely to try to protect the feelings of those we know and love.

Emma in response to your original post... Have you and your husband visited a Maggie's centre or anywhere similar yet?  In the early days my husband and I chose not to behave like he had cancer for a while until it all sank in a bit.  This took months.

We asked friends and family to do the same so that we could soften the blow for ourselves and everyone around us.  He didn't want to be treated any differently.  He wanted to get on with life as normally as he could.  That was his way and our joint decision.  And in a situation where we have little to no control such as a cancer diagnosis, it can help to eek back some control by choosing when and who you do talk to about it.  Have you had a conversation along those lines at all?

I can't suggest any places for either of you to go for support because for one reason or another we haven't experienced any of them ourselves yet!  First stop Maggie's when I find the time.  I wonder if there are any walking groups in London for people in our shoes?  Anybody know of any?  I'll investigate...

In the meantime sending courage to you all xx