dont know what to expect

Might be worth asking if immunotherapy is an option at any point during your husband's treatment, they can do a biopsy on the tumor to see if it's likely to respond? 

From what I understand the treatment is different depending on the type of cancer cells you have. If you have adenocarcinoma and thought to be curable then it's X4 FLOT chemo, surgery's then X4 more FLOT chemo. 

My dad had his surgery in September. He's doing great at the moment, apart from getting dumping syndrome caused by too much sugar in food so he needs to have food that is less than 5% in sugar. But he's been away to Spain last month for a holiday and he's coming with me and my family to Canada next month on a road trip so physically he's doing great. Recovery is very person specific so what might be for one will be very different for others. 

I think getting another opinion at RM is a good idea at least you know that way you've tired all options. 

I'm sorry your going through this, it's so very incredibly cruel. 

I'm sorry you have received such bad news. If your husband is still able to manage to eat and drink fairly well, you could perhaps fit in a short break or two in the UK both before any treatment starts and during treatment, depending on the timing of cycles. I know it's not the same as the planned cruise or other holidays abroad. However, they can still be precious escapes together. We had to cancel our holiday in Greece last September but managed a couple of caravan weekends before my husband's treatment started and a weekend's stay in a log cabin with our young adult daughters once chemo, etc., was underway. 

We went skiing in France in January and to Krakow at the start of February.

Unfortunately, my husband's treatment has stopped because it stopped working. We're going through a horrible period since that blow, with his cancer growth accelerating and all sorts of horrible side effects. Once he's through this patch, hopefully, he'll start a different chemo. 

My husband was diagnosed with advanced adenocarcinoma in the oesophagus, the primary tumour by the GOJ, with spread to liver, lymph nodes and peritoneum. Surgery was not an option because of the spread.

I hope your husband is offered some kind of treatment to slow or stop the cancer. I think there are some people on the forum who've had just radiotherapy.Apart from being on meds for high bp and cholesterol, he was fit and active, just a couple of stone overweight. He's 63. 

I hope your husband is offered some kind of treatment to slow or stop the cancer. I think there are some people on the forum who've had just radiotherapy.

Sending a virtual hug. You're going to need plenty of these on this awful journey xxx

thanks for comments.  message from royal marsden hospital. they refuse to accept referral.  i am distraught. proposed chemo to start at end of this month cancelled and replaced with further oncologist and cancer nurse meeting.  i suppose to discuss the danger of chemo on his kidneys.  he is also diabetic - research suggests he has the 2 worst conditions deemed to be dangerous.

we re still living a life, going out etc. but he gets v tired.  i keep having forward flashes of life on my own. i will be itch him to the end, to hold his hand, but who will hold mine?

I'm sorry about this bad news but pleased for you that you can both go out and do some 'normal' things. 

I too have moments when my thoughts fast forward to after Rod has died. It's strange how the brain works. That's a very sad question. 

We're on this path together and must take strength and comfort from each other.

thank you for your kindness.  sorry for your ordeal also.  think i am still in shock, having suffered through the autoimmune hepatitis for a year - recovered and then for the space to then be filled by cancer - still seems unreal.  he doesn’t feel inclined to go away in uk. if weather is bad he will be grumpy and fed up. also, the food may be 5*, but if not suitable for easy swallowing, depressing.  i said we could stay in central london, nice hotel, out for dinner, see a show - but he is not enthusiastic.  last year we had to cancel 2 cruises - then the 3rd this year in january when he was ill, but before cancer confirmed. i am so cross. someone told him we should have taken a chance and gone on the trip. oh yes, middle of the ocean he can’t swallow - undeclared condition to insurance cover - so no cover - and me having to get fund for helicopter?  hospital? repatriation? then what? sell the house to pay for the usa medical bills? the ignorance is staggering.  people tell me not to pre empt and stay positive and that is pointless dialogue. we have been told his cancer cannot be cured, been told an operation is not an option, the best is to hope for is a delay.  you all know all this, many of you have the same grim analysis.  chemo may cause damage.  every way i turn to help, i am blocked. found a website for clinical trials. waiting to hear.  forward flash. a new show in the west end - determined we should see it, will be great fun and then realise opens in september and my heart breaks again.  will we both be here?  i read on another site that a man has turned his prostate cancer into a joke - whatever gets you through the night i suppose, but i find the constant jollity bizarre.

Yes as you say whatever gets you through the night but personally I would rather be positive and jovial about my cancer than angry and resentful ! That’s what I find works for me ! 

You are obviously going through the turmoil of emotions that are all part of the grieving process. With a terminal diagnosis this begins before death. For those of us dying this involves grieving for what we are losing such as the last time we can go somewhere or do something or see a loved one and for what would have been.such as seeing unborn grandchildren.  For the partner, or soulmate this shared journey of grief goes on beyond death. With the loss of my husband my life felt pointless, in that it lacked the direction the shared dreams and goals that come with a loving relationship. After he had gone the pain of grief was unbearable and tears never-ending. From when he was initially diagnosed with cancer we cherished every day and did not let negative emotions dominate and further spoil what time we had left. I think that is what your friends are advising you to do and if so, I agree with them. I regret nothing about how we spent our final weeks together and our good friends endeavoured to bring joy and lightheartedness to our home which they did. Save the tears and the anger for after he has gone.

dear rosiee, thank you for your input.  sorry for your loss.  we dont sit in every day sobbing and staring at the walls and i am blessed to have friends who care, but the be strong etc rhetoric is spurious. it is said by those who have no experience. the people i know who have lost their partners speak in a different way. anger is fine.  it helped us get through the last awful year - it propelled me to demand the best medical care for him.  anger made me nag and push and insist. we thought he was going to die and anger made me determined that he would not.  anger is not a negative emotion, depression is the one that is useless.  i understand that people often don’t know what to say, but that is their limitation, not mine.

Hi I can resonate with you completely. We are now in end of life care, hospital bed in lounge, nurses and carers arriving daily. Like you his diagnosis was terminal last Dec, when all treatment stopped, no chance of surgery, and secondary tumours and spread to the liver. 

I have been very vocal getting the care and appointments he has so deserved. We thought we had help when allocated a hospice nurse, but her input at time was not helpful, and promised so much but, fell so short. We now get communication from a local GP who is in charge of palliative care and a hospice senior consultant. Our nurse has been off sick for 3 weeks, feel it is stress related.The work load is horrendous and that is when things slip and fall through the cracks.

I have good support, but I still like to do the things I usually do, the shopping and keeping my home clean and tidy, I know they all mean well and are concerned about my lack of sleep, but I will have a lifetime to sleep after he has gone. As you have said we have been through various emotions, and anger has kept me strong. 

Dear Floppy 

I am really sorry if my reply has added to your angst. I did not mean all natural emotions including anger should not be felt or exhibited when appropriate. I remember quite clearly losing it to a pen pusher when discussing hospital bed allocation. My intention was to advise not to let such feelings dominate precious time with your husband .

It seemed to me you were struggling to come to terms with how ill health has affected your lifestyle and you were reaching out for advice. I apologise if I have misconstrued this.