i dont know where to turn or what to do

Hi. Sorry to hear about your husband. My dad has incurable cancer and isn't eating. His care team said to let him eat anything he wants. Even if that is cream éclairs before bed. Today he is really off his food because he has double vision. He has some ensure shakes. These may help your husband.  

Take care x

Hi Daisy_21, my husband has Multiple Myeloma and his appetite is affected as well, not as badly as your husband’s but still….. The specialist nurses told me not to worry about what he eats (although obviously the advice is healthy food), just as long as he eats something. Since he has been on his treatment he seems to only want sugary things, which reading through all the blogs seems to be common. He’ll eat a whole packet of chocolate digestives and bowls of ice cream and prunes, but will turn his nose up at ‘proper’ nutritional dinners.  

It must be so worrying and distressing for you, as like me you only want to help and try to make him feel better. Has the hospital offered any advice? When my husband was in hospital having a stem cell transplant he couldn’t eat at all and he requested a tube to be inserted where they could feed him straight to his stomach, sort of like a complan drink. I’m guessing your husband might refuse….?

You mentioned you’re arguing every day, again I find us doing the same and I have to give myself a kick every so often and not put pressure on him, very difficult when you know the medication is so important. I’m sure you’re already trying lots of ways, but again perhaps the nurses might be able to help with some tips….. I find myself getting a glass of water and just putting the box down on his side table, not saying a word but hoping the message gets through gently. It was easier when I controlled his meds, but my husband insisted on looking after them and naturally wanted to be in charge and who can blame them when they have lost so much control over so many things, even their own bodies. It’s heartbreaking! 

Love and hugs to you Daisy_21, hope ‘things’ ease a little for you xx

Hi CuppaTea,

Thank you for your lovely reply.  I've spoken to the oncologist and she prescribed steriods to help his appetite but that didnt work.  he has ensures which he drinks occasionally.  what i do now is buy ready meals and put them in the freezer and he occasionally eats those.  i've stopped trying and realise he will eat when he wants.  the thing that is upsetting me is his complete change in personality - he was the most loving kind man i ever met but now he's the complete opposite.  I just don't want these to be thee things i remember when he's gone.  

I hope things are gooing OK for you xx

Hi Daisy_21

I feel for you as I’m currently dealing with the same thing. My husband had tonsil cancer in Jan 2020. That was successfully treated although a very tough process. It then progressed to his lungs by the Sept. He was given a year to live in Oct 2020 but is still here. It moved to his brain Jan 2022. 2 brain surgeries later and it is now in his stomach and liver. Right now when he drinks water it is coming straight out his nose. He has lost his voice completely and swallowing is so sore from the ulcers from the chemo. Eating and drinking is so difficult and all I do is nag him. He is so thin compared to what he was before it’s heartbreaking to watch him struggle. He gets snappy with me too but I just take a breath and walk away. He usually apologises later. I’m not sure how long he can continue as he is so weak. I have to dress him and everything right now. No one has mentioned what happens after the chemo becomes too much. He will not discuss the future with me at all and I feel so alone in a marriage that was so strong and close before. Took me 2 years to get him to agree to sort out our wills. I just wish I had an ounce of understanding how he is feeling. I want to know if he’s scared or angry but he doesn’t want to really talk. I am winding myself up into a blind panic most days imagining what it will be like at the end. I simply can’t get my head round that even though I know it may be soon. I feel like this cancer is killing me too. Have you spoken to the community care team at all about visits? Sometimes the nagging comes better from strangers and then you don’t bear the brunt of their frustrations. My husband gets really angry with me because I can’t understand him at all right now. His tongue is swollen and with no voice it means I have no idea what’s he is asking me most of the time. I feel helpless and yet trying to do my best to look after him. Nothing and no one can prepare you for everything we’re going through. Sorry I couldn’t offer you any real support other than knowing you are not alone in this. Kate

Hi, I've only just joined. Not sure what I am doing. Does this sharing really help. My husband has a liposarcoma in the abdomen. It is a 3 stone mass now. Barely eats and looks like a skeleton apart from the abdomen. It is due to medical negligence that he now has incurable cancer and been told that he has weeks to months to live. 3 hospitals refused to treat him as it is so far gone. The 4th hospital is giving him chemo but is in hospital after the 2nd round. We pushed for chemo otherwise I was going to crash the car on the way home if they didn't help. Feel so desperate as we are in our fifties. Feel so helpless. How do you keep going? My heart goes out to you all. 

Hi Amycakes

Admittedly there are days I feel I just want to run away and I’m not sure typing any of this out helps. I’m just so fed up of crying in the shower and every time I’m alone or just walking the dog. I’m a natural planner and talker and both of those things are just not possible right now. I’ve given up work to look after my husband even though my job was the only thing keeping me sane. He has chronic fatigue and can barely shuffle to the toilet himself. I’m actively grieving for everything we’ve lost and trying to prepare myself for the end - something which I am utterly terrified of. I’m normally very strong but honestly don’t think i can handle what’s coming even though I’ve had 2 years to come to terms with it. When he was fit and well and fighting hard - I thought I would be fine. Now the reality of what the cancer is doing to him just crushes me more everyday. It’s like a slow torture and I’m still really angry that my wonderful husband who worked so hard to enjoy life won’t get to see our grandkids or live out any of our dreams and plans. He’s only 57 and I’m 53. It’s too soon. And I miss him terribly even when I’m lying right next to him. If I could just talk to him like we used to I think I’d be ok but he’s shut right down. We are both alone and it’s heartbreaking to live it. So sorry to hear that negligence contributed to where you and your husband are now. That’s very hard to deal with. I hope you can carry on getting the help. Or at least take the bus on the way home next time. Thinking of you. K

Hi Sharpie. Thanks for your reply. It sounds like you are writing about us. We are all the same age and feeling the same. The feeling of loneliness and desperation is unbearable at times. They make out you have help all the way through but it's not true. Mental torture, like being in a horror movie and knowing the end. We are being robbed of our futures that we planned. I had given up work a year ago to look after my mum, then she went into a care home in July and my husband deteriorated and I then became his carer. Just want you to know that I understand your pain and anguish. So sorry for you both. It is hard to be positive and upbeat. We try to keep things as normal as we can as our children still live at home and aged 19 and 22. You take care, thinking of you both.M