Husband with terminal cancer- thinking all sorts of awful things that I shouldn’t think:

[bertomi]

Husband was diagnosed with Stage 4 bowel cancer in July 2024. It had already spread and despite 10 chemo sessions plus 6 immunotherapy sessions, he is now with palliative care nurses and we regularly visit our local hospice. My thoughts are that he doesn’t want a long drawn out death but he seems to be rallying as a result of the drugs he is on. He is v v thin but other than that he is better on these drugs. Forgot to mention he has a stoma bag.
I just feel like my life stopped in July 2024 ( how selfish of me to think about my life, I know). His small bowel will block at some point and at that point it is pretty much game over. My issue is … it’s the waiting. The waiting. When is he going to die? When is he going into the hospice? When can we all sort of …. Move on?? Don’t get me wrong, I adore him but I’m teetering on the edge of every day … could it be today??????? Can anyone relate??? Thanks

Thankyou and I’m sorry you are on this relentless merry go round too. Yes totally done, mentally, physically and emotionally. It’s tough isn’t it?

Hugs OP.. xx

@Enigma54 and @stomachamelon thank you so much for your posts. They are likely to help OP more than anyone else's.

I am so sorry that you are both going through this on the other side. I wish you and your loved ones the strength and support that you deserve.

I am so sorry @Enigma54 and @stomachamelon that you are going through this.

The people who say "cherish every moment" don't really understand imo. We can't cherish every moment because so many moments are shit. Am I supposed to cherish my father shaking in pain because they've drilled into his bone and chipped a bit off for a sample? Or vomiting repeatedly with the effects of the chemo drugs? Or being too weak to do basic things for himself?

There are some nice moments together and it is good to have time to say the things we want to say to each other, but I absolutely refuse to have any expectations put on me to "cherish" anything. And my father doesn't want that either, he's too unwell tbh.

What a lovely post. Thankyou. 😊

I have absolutely no experience of your situation and I think it sounds completely normal and understandable. So you don’t even have to ‘know the feeling’ to empathise with it.

@DarkPurpleSpots I totally understand what you are going through and I’m sorry to read about your dad. As you say, you can’t cherish each and every moment ( the vomiting and neutropenic state are not to be cherished!)

You and your family, are doing your absolute best; again, you are only human. I need to consider that when yelling at DP about buying the wrong washing pods or something.

Sending empathy to you, I know it’s tough. Well it’s first class shit really 🌺

You guys are incredible. Every single one of you. I missed the nasty poster as sent to bed early - what is wrong with people? I am so very grateful- you have all lifted my spirits more than you will know. I am normal, we are just struggling with a dire situation and he’s been so brave. Honestly. But he isn’t the man I married and I think I have grieved that person. My support for him and our family is unwavering but I needed to offload. Thank you Mumsnet posters, thank you. Apart from the troll. You can fuck off.

By the way I wasn’t ‘sent’ to bed I willingly ‘went’ !!!!!

Thank you for this comment. My mum very early this morning. I was with her until 10 last night but went home. They asked if I wanted to come and see her. I said no but was feeling slightly guilty about that as if I was an uncaring daughter. This makes me feel more comfortable about my decision.

I have spent 7-10 hours a day in hospital since last Thursday and tbh I’m drained after that short time.

I'm so sorry you are in this situation
My lovely sister died of cancer at 32 last year. We had 10 weeks from diagnosis until she died.

The waiting was horrific, felt in constant limbo and heightened state waiting for the inevitable. She was very up and down, some days she would improve. It messed with my head tbh
The last week before she died, I remember crying in bed wishing for her to pass as I couldn't bear to watch her suffer a moment longer.

All of it is hard, your life is limbo. Know that everything you feel is normal

Please don't feel guilty, I have worked in a hospice and have many times seen people die when their loved ones have gone home or stepped out for a moment. My own dad did it when my mother left the room for a few minutes to call my brother to update him on what the doctor had said). I truly believe that a lot of people pick their moment (for want of a better word). Your mum knew she was loved and she knew you cared.

This happened with my dad- he passed while I went out of the room to call the frankly useless Macmillan nurse who was barely around. I was gone about 5 minutes and my dad chose that time to pass away. I definitely believe they do this deliberately- maybe for privacy and/or to protect their loved ones from the moment of death. Either way, no need for guilt at all.

@bertomi thank you so much for this thread! My husband is also stage IV but oesophageal cancer; I feel exactly the same as you and also feel I can't express it; it feels like a death sentence for us both - we can't plan anything or go anywhere due to weekly chemotherapy. He's 59 and we are very unlikely to enjoy a retirement together. It's rubbish for all the family.

Thank you for this thread OP and I am so sorry you are going through this. My DH has brain cancer (GBM) and I have been finding my feelings so difficult to process. We're both mid-40s, our teenage kids are finding it really hard and brain cancer changes so much of a person. GBM has a dire prognosis and I'm finding it so hard to manage everything that is thrown at us. Anyone who has walked down this path with understand how you are feeling.

GBM25, I hope you are getting some support, my experience was support was patchy at best, it is the most devastating diagnosis.

Please message me if you want to know what the landscape might look like going forward.

Bertomi - just seeing how you are doing.

Hello and thank you for thinking of me. He’s got steadily worse and is being admitted to our local Hospice this week. It’s so so pants xx

@bertomi thinking of you all.

So sorry to hear that. As someone at an earlier stage in a similar journey, my heart goes out to you. I do hear very good things about our local hospice and I hope that they are able to give you all the support you need at this hideous time xx

Sadly there are no words that I can say that will change the sheer awfulness of your situation.

I will be thinking of you in the coming days and weeks, sending you strength and hoping that your time together is calm and peaceful.

I'm so sorry. This takes me back, and I feel for you.

Do let the hospice take up the practical strain now, and let them support you both. Wishing both of you a gentle journey to a peaceful ending.

You are all amazing. Thank you xx

Apologies- no idea why it's posted twice!

@bertomi thinking of you at this awful, awful time. Xx

Thank you. It’s 4.18 am and I’m downstairs having a cup of tea as I can’t turn my brain off 😢😢😢😢