After nearly two years of trial treatment we were told my husband’s liver tumour was growing again and there was nothing further to be done. In June we saw the consultant who referred us to the palliative team and advised us, as my husband was still positive and relatively well, to get our things in order and enjoy life. He wouldn’t give a time scale as he said nature was a remarkable and unpredictable thing.
For two months things seemed fine - my husband arranged to stop work, we planned a number of weekend trips away and looked forward to making the best of things. However, exactly one month ago something changed. Out of the blue, while away for a few days, he stopped wanting to do anything complaining he was exhausted. He stayed in bed past 10, then when we went out would be asking to go back to the hotel by 3pm.
My husband is now sitting on the sofa all day wasting away. He has no pain but constantly complains of a weakness in his legs which is stopping him moving. He has little appetite and complains of feeling sick. Both the nurse and myself have offered solutions to help this. Various medications. Eating little and often and things that he fancies eating. Setting himself small targets each day to get him moving but he’s having none of it and I’m getting so frustrated with him.
He refuses to speak to anyone - when the nurse asked if he was able to speak about how he was feeling he just said no. He has no friends to visit as he cuts them off. I feel everything is on me. I knew things would get difficult but not like this. I feel I can’t cope with his mental state now and worry about what will happen when he does get physical pain.
I feel sad, frustrated and angry with him for not trying anymore.
This morning I’m feeling incredibly guilty as my husband has taken a turn for the worse. On Tuesday he fell trying to get up out of a chair and following that he opened up a bit about how he’s feeling. However, he’s now so weak he can’t manage the stairs. Between us, my son and I got him up them to bed on Tuesday but there was no way he could attempt them yesterday so he spent the day in bed. In 24 hours he seemed to deteriorate completely. The nurse is coming out this morning as he also admitted he can’t swallow well enough to eat.
I now feel unfair in expecting him to try more when he was obviously suffering.
I totally agree and am moving from guilt feelings to feeling ‘sorry for myself’ I think we ve moved into a new phase of this vile ‘journey’ as my husband is now waking in the night needing the toilet or to be sick as he says his leg/hip is too painful to stand on now. I am 75 and have my own mobility problems and cope by help from the osteopath and from swimming. I ve had to cancel my osteo appointments and can’t go swimming ( which helps my arthritis and helps my flexibility) My husband has started to say he doesn’t want me to ‘leave him’ although I do slip out guiltily for a walk or chat with neighbours while he s asleep ( and I m only yards away really—but feel so frustrated and helpless. I don’t know who could help me as lots of friends offer but no one wants to sit with him listening to him being sick And he doesn’t want anyone with him to see him in this state. His terminal stage 4 stomach cancer has swollen his stomach so he looks 8 months pregnant so he feels embarrassed for being seen like this. A lovely 87 year old friend has offered to be with him if I pop out for essential trips but he won’t agree to this! Sending love to you all who are having this hideous caring task put on them ! xxxxxx
MaddieR
The offers of help are another worry aren’t they. It is so hard to accept them because we know it’s not just a case of sitting chatting but dealing with the toilet and sickness. My husband tries everything to avoid being sick and wouldn’t want anyone to deal with that.
Keep up the slipping out - I’m blessed with fields at the end of my garden so can have a quick 15mins walking there when my head gets too overwhelmed.
Take care xx
Oh thank you so much —MrsJP—That is exactly it!! Friends offer help but as you say we can’t expect them to deal with that plus our husbands don’t want to be seen in that state ! Please take care — as we keep being told ‘you must look after yourself’ — easier said than done ! XX
Have you spoken to a McMillan nurse? If he/she can’t help, they might have a solution.
I can totally relate. He complains about any noise, shouted at the dog for panting. The other day I was seeing along (very unusual for me) to Don't Worry Be Happy. That didn't last. Staying in, the silence, 24/7 is getting to me
You may see it as giving up but he may just be accepting his fate and doesnt want to prolong the process. His quality of life is diminishing and maybe hes letting his body begin to wind down. Prompting him to be active, eat or drink if he is struggling doesnt benefit him if hes in his last months. Let him decide if hes able or not. If hes saying no then all you can do is leave that with him. Cancer is robbing him of his life and maybe hes trying to keep some control.
I know its difficult but he is going to begin to decline and its not beneficial for him to fight that. It is extremely difficult to watch but I watched my aunt battle to stay with us and it caused her and us upset. We often wished she would let go and not suffer any longer. But if its a case of he has given up and is more capable then again you cant do much about that if hes not willing. Dont distress yourself by focusing on getting him to do things if he flat out refuses.
Its ok to feel overwhelmed and frustrated and the best thing to do can be to give him space and maybe do something you enjoy, focus on self care as your mental health is equally as important.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007