Hi Louman,

Welcome to the forum but sorry for the reason why you need to be here. You have a lot going on around you and trying to cope alone is hard.  Whilst of course we hope that 'terminal' loved ones can be 'treatment managed' for as long as is possible (it was a different cancer and my husband of 37 years) but that also means that the family around him are also 'suffering' from the fears and frustrations that brings.  Its an absolute emotional rollercoaster or 'keep busy and block it out' until we need to call on outside help. My children were adults and not autistic (I have a friend who has a teenager who is also autistic and know how draining it can be as much as you love and cherish them).  I think you are actually feeling everything but to cope are concentrating with day to day life as  best you can and doing a great job by the sounds of it.  I am not sure where the strength comes from when needs must as I had never thought I would cope but with a lot of help (asked for) and determination I somehow managed.  This forum was a great place to offload (somehow it released some of the tension I felt just by pouring it out).  I hope you have family and friends that can support you but do come on the forum any time and I hope others will be along to offer support soon.Jules54

Thank you for your replies. He has now started his next cycles of treatment although at a reduced dose. He told someone the other day that his aim is to make it to his 50th birthday, which is 4 years away, I don't think he has any idea how bad things are. He doesn't seem to manage to eat a full meal any more and I think that's because of the increase in the size of the Tumor in his liver. I managed to get him to go with me to book and pay for a funeral plane the other day, but now I feel awful, because when I mentioned it to my mother she told me it was disgusting, and how could I have done that. I wish I knew what the right thing to do was

Hi

I think your husband is using his 50th birthday to give him something to aim for and that is sometimes helpful for the sufferer as well as family and friends. Despite my hubby being fully aware of his terminal diagnosis we continued to plan ahead and were continually told by his medical team to 'put your life in order'. For us this included making wills (both of us!) and sorting various financial matters as we knew this would make some of the arrangements easier when the time came.  I am sad that your Mum made an upsetting remark to you about the funeral plan.  This is an arrangement that I know many have in place and not necessarily due to ill health but as a financial safeguard. Its a personal decision and can relieve stress at the time of a bereavement.  My Dad discussed and planned his own funeral when he was diagnosed and I already have my Mum's written instructions for the future.  It was good to know that  I knew what he wanted and can fulfil my Mum's wishes in the future.  I am sure  your Mum is struggling emotionally especially seeing what you are having to experience and perhaps just does not understand your need to have such matters settled in your own minds.

The reduction in your husband's appetite will probably be a mix of things.  When this began to happen with my own husband we were told both the cancer, its treatment and emotional feelings all contribute to this. We saw a dietician and also switched away from normal meals to small child size amounts but offered more regularly and to offer high calorie items whilst he was able to eat.  Adjustments were made as his illness progressed.  Drinking full fat milk was easier than eating especially during treatment. 

Remember, there is no right or wrong way to do things, its just what feels okay at the time you need to make a decision for you both. My husband was a very quiet person who hated making decisions and talking about his cancer but me and the family were always his inner concern and he had made provision for me to be able to cope financially and his thoughtfulness in that respect helped in a very stressful and emotional time.

Sharing on the forum made be understand myself as well as those around me.  You are not alone with your fears and frustrations and many here will relate to them so I hope it helps to  be able to write things down and have virtual support.  Sending a hug. Jules

Hi

I think your husband is using his 50th birthday to give him something to aim for and that is sometimes helpful for the sufferer as well as family and friends. Despite my hubby being fully aware of his terminal diagnosis we continued to plan ahead and were continually told by his medical team to 'put your life in order'. For us this included making wills (both of us!) and sorting various financial matters as we knew this would make some of the arrangements easier when the time came.  I am sad that your Mum made an upsetting remark to you about the funeral plan.  This is an arrangement that I know many have in place and not necessarily due to ill health but as a financial safeguard. Its a personal decision and can relieve stress at the time of a bereavement.  My Dad discussed and planned his own funeral when he was diagnosed and I already have my Mum's written instructions for the future.  It was good to know that  I knew what he wanted and can fulfil my Mum's wishes in the future.  I am sure  your Mum is struggling emotionally especially seeing what you are having to experience and perhaps just does not understand your need to have such matters settled in your own minds.

The reduction in your husband's appetite will probably be a mix of things.  When this began to happen with my own husband we were told both the cancer, its treatment and emotional feelings all contribute to this. We saw a dietician and also switched away from normal meals to small child size amounts but offered more regularly and to offer high calorie items whilst he was able to eat.  Adjustments were made as his illness progressed.  Drinking full fat milk was easier than eating especially during treatment. 

Remember, there is no right or wrong way to do things, its just what feels okay at the time you need to make a decision for you both. My husband was a very quiet person who hated making decisions and talking about his cancer but me and the family were always his inner concern and he had made provision for me to be able to cope financially and his thoughtfulness in that respect helped in a very stressful and emotional time.

Sharing on the forum made be understand myself as well as those around me.  You are not alone with your fears and frustrations and many here will relate to them so I hope it helps to  be able to write things down and have virtual support.  Sending a hug. Jules