Positivity needed

Hi! 
my husband was diagnosed with incurable oesophageal cancer in august, very aggressive, large tumour. They told us he would have 9-15 months. It's been a devastating time as you can all agree. We have 14 and 9 year old boys as well as grown up children and all have taken it hard too, especially the younger ones, although they are not yet aware that daddy won't get better. He's just about to start his 4th cycle if EOX chemotherapy and I have to say he's coped amazingly well and has even managed to continue working as a builder throughout, although the tiredness is really getting to him now and I think he'll have to start cutting down on work soon as he's getting too tired and weak to do a lot of the jobs... something he doesn't like to admit! 
 

I don't really know what I'm posting for... I know there are not really many happy endings where this is concerned. I just feel we have had very minimal support and it's all soon and gloom when we talk to doctors. Did have some positive news yesterday when the results of his most recent scan are showing that the tumour has shrunk and there is no evidence of a spread... so some prayers are being answered. Just wondering if I can hear others experience of EOX? Can we expect it to get a lot worse before he starts maybe feeling better? So far side effects have been pretty manageable, feels the cold very badly, some nausea, constipation, could be way worse. Just this last week the extreme tiredness has been getting to him and he's worried that it will get much worse than this. 
 

Any positivity will be very gratefully received. 
sorry for rambling and thanks for taking the time to read
 

Fizz 

  • Hello lovely, I can't give you hope as im

    in the breast cancer mastectomy queue but I can send you lots of positive love and prayers and hope and I'm sure there is someone on here who can offer more but meanwhile keep that strong face in front of your children but do contact a support group to help when you are falling apart. Huge love, I'll never meet you but I'm willing your husband well xxx 

  • Thank you so much, I'm so sorry to hear of your own battles. I hope you have lots of support at home. I'm so happy to have discovered the chats on here... much tho I have supportive friends and family, I find it hard to know what to say other than "I'm ok thanks" seems a bit dramatic to say that actually I'm falling apart inside and don't know how to cope. I am just "functioning" 

    At least here other people know how it feels to have your life turned upside down. 
    My thoughts and prayers are with you and your family xxx 

  • Hi there, I hope you dont mind me popping in, your husbands story sounds very similar to mine, he has T4, N1, M1, oesophageal spread to lung, chest nodes. Starts EOX tomorrow am terrified as no idea what to expect and so far nobody has replied to my thread asking about this. Just wanted to offer support to you wife to wife, its not an easy time especially being a mum, we have two older children but they are very scared. I have just started a new job, five days a week, after losing my job in travel this year and am wondering if I should just stay home to look after my husband. I do hope that your husband continues to do well, your comments so far suggest he is rallying with treatment which is fantastic. 
    I was not able to be at the oncology appointment so only know what my husband told me, he didn't give any indication about prognosis etc. Sending you best wishes for Christmas and hopefully a happier new year for all of us x

  • Hello Fizz,

                     l read your post with a sense of sadness and awareness of the issues you raise,the cold,the tiredness, and the uncertainty.My stage 4 tumour was in the bowel with spread to liver,60%of which was removed along with gall bladder.l too kept working as l had  a livestock farm,guesthouse,and small community post office,but it got increasingly harder as the treatment progressed.l still kept going,never accepted defeat,but recognised when tiredness became overwhelming to take too my bed,realising l could get up again and carry on.l took it the absolute brink but always feared that that one extra step would plunge me into an abyss.Your husband will find this and his limit, and like myself will adjust his working life to take account of the circumstances.l always felt it right to push,and felt this would give me some measure of control on my fight back to health.Six years on l am back fighting fit and making up for the years not lost,but given over to evicting my unwelcome guest.

                                  We never know the outcome of this unwelcome visitors presence in our body until we complete the journey,but l do know that never ceding it control in your mind,and keeping stress to an absolute minimum are good allies to have by your side.l am pleased to read of the positive signs that the spread has ceased and the tumour is shrinking,and l hope this path is set leading to a good recovery.Be sure in amongst all of this to look after you,even broad shoulders need some help and assistance,

                                                                                                     Take care,

                                                                                                                          David