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

Hi Louman,

By a strange coincidence, I have Oesophageal Cancer and an autistic son (now in his twenties), so I may have an idea of what you are going through.

"Not feeling" anything is probably your mind's way of coping with having so many things going on in your life. Not exactly denial, but more a knowledge that if you were to give in to your feelings everything would become too much and you'd be overwhelmed with emotions - far better to keep busy and keep in control.

I'm not saying this is a good thing, or a bad thing, just that I recognise something similar to the way I cope with my own situation. If it works, why knock it?

Not knowing what the future holds is the hardest thing any of us has to face, especially when you have been through so much as a couple and as a family.

I realise this reply doesn't offer much practical help, but I wish you and your family all the best and hope that the chemo works for your husband.

Good luck
Dave

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

Your Mum needs to keep her opinions to herself!
Some people, including some of our family, avoid talking about funeral arrangements in case it "tempts fate".

You've been practical and you will now know exatly what sort of arrangements your husband wants. You will at least avoid getting it wrong only for someone to pipe up on the day "I'm surprised it's being done this way, he always said he wanted to be buried at sea" or something similar!

Best wishes
Dave

What do you do when you feel alone ? I have great work colleagues, who ask me how things are everyday, I have good friends don't know what to say. I have my children who are running me ragged, but I suddenly feel so very alone, and I'm terrified. He want to go away in couple weeks, it's his twice yearly visit to parents with kids. I can't get any travel insurance for him, and if something happens I don think he'll come home. He knows how I feel, but I also know it's what he needs to do. I can't tell anyone, I know what they'll say, 'he shouldn't go' but they don't understand , I'm caught between a rock and a hard place. It's keeping me awake at night

Hi Louman

From my own point of view when I felt 'alone' during my husband's illness I did a couple of things. I talked on the forum (as it seemed to help to write down how I felt and see it in black and white) and I let my heart rule my head! I learnt that it was 'our' journey but that it was his opinion that mattered the most because his time was limited and I felt it important that he chose his way of dealing with the cancer (however it did leave me  often feeling guilty and frustrated when I had to bite my lip when others 'questioned' decisions made).

Travel insurance has been discussed many times on this forum (there is some information on the main Cancer Research UK site and possibly other readers can offer advice here) but my husband would not travel very far afield so was not an issue we had to deal with.  Having said that we did have the odd weekend away and it gave us both a short term 'escape'. 

I am sure you will do what feels right for you all and, at the end of the day, that is all that matters. It's 7 months on since the loss of my husband and my head still questions some decisions but my heart has no regrets. Sending a virtual hug (I really relate to the sleepless nights which I still have to deal with) and a peaceful day ahead.  Jules 

Hi Lou,

That's a hard question to answer. As a parent of children with autism I am sure that feeling alone isn't a new experience for you, it's damned hard. Whatever coping mechanisms you've developed to deal with the impact of autism will be useful for coping with the impact of cancer. Perhaps that explains the "not feeling anything" stage you went through? 

This forum is a good place to visit when you are feeling down. I guess that's partly why I'm here at the moment - I can't sleep and I get the results of my routine CT scan on Wednesday, that's always a nailbiting experience.

Travel insurance is available but it can be very expensive. Since I was diagnosed I've visited India twice and the insurance cost as much as the flights. Well worth it though as the cost of getting home if I had a relapse whilst thousands of miles from home would have bankrupted me! There's some useful info on this thread - I hope you manage to find something affordable after shopping around! www.cancerresearchuk.org/.../cannot-find-travel-insurance-for-my-mum

All the best
Dave

Lou.  sorry to  pinch your thread to speak to Dave but just wanted to wish him all the best for tomorrow's appointment.  He is of great support to the forum and I am sure his comments will 'ring true' with you and hope his link proves helpful.  Best regards to you both.Jules