DH waiting for second transplant...turned into what I can only describe as a zombie

[Lalaland50]

I've written before about my DH, who after having a stem cell transplant from a donor, in January, ended up almost immediately in ICU with heart failure, which he overcame, but then had engraftment failure, which meant the transplant failed. He's been in hospital since then, in his own isolation room (it's a big room with a TV), as he is completely immunocompromised with bone marrow failure. His heart has actually improved and gone up from having an ejection fraction of 25% to 45%, and a second batch of stem cells have just arrived from the same donor. So we are waiting for another transplant which will happen next week.

However, in the meantime, he is very poorly and depressed. He is very weak, blood and platelet transfusions etc all the time and on a feeding tube. He can talk, walk around a little bit, and use the loo himself, and I have seen him a bit chatty with the doctors, but otherwise, he is pretty much a zombie. I try to visit as much as possible, and with our two kids (9 and 13), but I feel like he's just not really there. He refuses to eat anything, even the drinks the dietician has prescribed for him - and however much I ask him to, he just won't. And if I'm not there, the nurses don't push him. He really needs to get stronger but I feel as if he's just given up to be honest. He has piles of letters and cards from friends, which he hadn't opened (when I opened them and read them to him, he just wasn't interested), masses of texts which he hasn't looked at for weeks and weeks, and won't speak to anyone.

He has a therapist that I'm trying to get him to text to arrange a session over the phone (i've also spoken to her and she said she can talk to him any time), but he just won't do it. And the hospital psychologist is away at the moment and to be honest, I'm not sure much help. I've spoken to his team and they say is having an appropriate reaction to what's happened to him - after 2 years of reoccurring blood cancer, the transplant was going to be a cure and it is devastating that he is where he is, but this second transplant can work. I got upset with him today and told him I thought he was giving up, but he told me he is doing the best he can - which I know he is - it's so awful what is happening to him, but he's usually such a joyful, positive and energetic person -he's only 51.

Anyway, I wondered if anyone had any advice for me. I just want him to have a fighting chance. Maybe I'm looking too much into it and should just let the medicine work, but I also know how important and powerful the mind can be at times like this.

Thanks for reading my long post!

I'm not sure I have any advice

But I want to let you know that I hear you

Do you have a local cancer support centre? They can't work miracles of course, but they might be able to provide a range of services - for you as well as him

It sounds like in his eyes he's had an enormous set back, a massive hope has ended with him being more ill than ever. How long has he been in this frame of mind? Has been speaking honestly with anyone?

I hope your doing OK, I would agree that the mind and body are important- but perhaps, and I mean this as gently as possible, you could also benefit from some counselling? you can't keep someone else going by sheer force of will - but by god, we do try and rip ourselves to pieces if there is the ghost of a chance.

You know your husband, and I'm sure you've seen him move through dark times before, but being physically limited and isolated I'm sure has taken its toll, and it may well just take time and gentle support.

This is so hard for your husband, you and the children. Sometimes talking doesn’t cut it. The silence can be what is needed. Sometimes what someone needs is the other person to sit with them in that silence. And that is hard. In the silence we are feeling the feeling. Just being present with him might be enough.

And totally agree with @Timeforabiscuit, carers need loads of support too. Please ask for yourself and your children.

Thank you so much for your messages. I do have my own therapist, but she is away the moment, and she is very helpful. I agree, I need to speak to her when she gets back. And yes, I can see that there isn't really anything I can do other than sit with him and be with him when I can. It is just very painful. I'm back at work next week which makes it harder as I won't be able to see him very much (I'm self-employed, so hard to take time off). In the meantime, the waiting is so difficult - the treatment starts again next Monday. I am tying myself in knots as to if it's going to work - and I am being incredibly superstitious, with every bad dream I have (every night) thinking it's predicting the future, or putting his own state of mind as a factor, so it is hard.

He's been in this frame of mind since we found out the graft had failed, so mid-February. And yes, it was a massive hope that has ended in setback.

Hi @Lalaland50

My late DH sadly died of cancer at a very young age. Although this was 10 years ago now one thing I learned was that state of mind (his or mine) doesn't actually change anything. All this "battling cancer" / "kick cancer's ass" rhetoric is bullshit - it's a disease which will do what diseases do, it doesn't respond to emotions. So let that be one less thing to worry about. Allow him and yourself to feel despair, it's a truly shit situation and neither of you need to try to be constantly positive.

Our hospice offer a counselling / support service - can yours ?

My advice is stop hassling him. It isn't about you, it's his illness. He's devestated due o a setback, so stop expecting him to pick himself up and soldier on in a positive frame of mind just because it's what you want. "Let" (not that you've actually got any say in it, as you're realising) him have his emotions, be devestated and the physical impact of those emotions too, like the listlessness and not eating much. He'll rally himself when he's come through those feelings, if they last a disproportionate amount of time then it could be depression. I know you're gutted he might die but if he does (if the transplant fails again?) do you want him to have spent his last week's/months being hassled into putting on a brave face for you? Look elsewhere for support and reassurances, not to him, he's got enough on his plate dealing with his feelings and his own mortality right now. At the moment you're expecting something of him which he can't deliver, this will only make him feel more shit. Be there, but without expectations, like the medical staff are doing.

It’s really hard when the patient is normally an upbeat positive person and they go down a rabbit hole… I am dealing with a stage 4 cancer diagnosis and have been very upbeat and positive all the way through but in January I hit a real low point due to treatment side effects etc and was in a space of wondering if it was worth it all. My partner tried to gee me up constantly and in the end I just said to him… let me wallow in this… it’s tiring enough dealing with illness, treatment etc but to then be positive etc on top it can be exhausting. I suspect my partner would have written much the same as you at the time but here we are a few months down the road and I’m back on an even keel. It’s hard being the patient and equally hard being the carer/partner.

I wish you and your husband well.

I think you need to seek support and positivity from other friends, family and professionals, and accept that for now he just is just surviving. You mention that "he's usually such a joyful, positive and energetic person - he's only 51", and it is natural that you desperately want to see that side of him. But he cannot honestly give you that right now - he us dealing with dark and frightening thoughts, and he shouldn't have to pretend otherwise, in my view.

Hi OP, has he had the second transplant yet? Hope it has gone well.

I’m not surprised he is depressed, given what you’ve said has happened. His reaction is entirely natural and reality’s probably just hitting home. It’s hard for you and the children but unfair (although understandable) of you to expect him to be the person he was before. Give him time and space to come to terms with things and test the waters gently now and again to see if he’s in a more positive place. Sending love and strength to you and your family.