Head and neck cancer carer support

 

My partner was diagnosed with stage 4 tongue cancer which had spread to his lymph nodes a year ago. He has radical neck dissection and some of his tongue removed and chemo and radiation treatment. We had a couple of months where he was cancer free but it has come back. We have been told he is terminal but they will do chemotherapy to prolong his life, he is currently on a feeding tube and quite weak and it is uncertain about whether the chemo is having any effect anymore.

We  lived in London but he is Greek and wanted to be close to his family now he has been told he is terminal so have recently transferred his treatment to Greece. I am feeling very isolated here as I don't speak the language and we are both so young I am 29 and his main carer and so none of my friends can relate to my situation. It's very difficult with the hospital in Greece, I think because of the transfer and the different system here.  At times I am struggling to cope with everything. I am hoping to find some carers to talk to for support on this forum about the emotions, stress and complications of head and neck cancer.

 

 

 

 

  • Welcome to the forum Cphil,

    You have come to the right place to talk about tongue cancer as we have a very active community of users with experience of tongue cancer. We have a fifty-page long thread on tongue cancer  here and if you say hello there you will be able to talk to others who are in a very similar situation.

    Our information page on tongue cancer  may also provide some answers to your questions.

    It must be a bit alienating for you to have to go through all this in another country especially with the language barrier.

    There is a cancer organisation in Greece you may want to get in touch with if you feel you want to talk to someone (though not sure whether they speak English too, but worth a try..):


    The Hellenic Cancer Society

    Website: www.cancer-society.gr
    Email: cancer-society@cancer-society.gr
    Phone: (210) 38 26 600

    I hope this helps a little! This forum will hopefully put you in touch with others who either have tongue cancer or are caring for a loved one affected by tongue or head and neck cancer. There are a lot of people here who are or have been carers so hopefully they will be along soon to talk to you.

    Best wishes,

    Lucie, Cancer Chat Moderator

  • Hi Im so sorry to hear this, and I know how hard this is for carers to deal with , My husband had a radical dissection over 5 years ago, with chemo/radiotherapy and was cancer free five years , discharged march 2015 then september the same year  a lump came up the other side ,back to square one and this time terminal, currently he only has a few weeks, possible days left as I writ e this , He was evntually offered chemo, but the UK surgeon even mentioned  it cost £2000 a pop "but cos your worth it we would give it" disgusting attitude , He was also told by a stand in surgeon , all gunhoe, he could do major surgery giving another 5 years if they removed his voice box.tongue etc

    , we had two weeks to decide , went back to say no, the original surgeon placed CD in tape box and said no surgeon would touch you now, its gone to far , basically the gunhoe guy hadnt even seen the PET scan and was  making the wrong offer , pretty obvious by the CD , why else woudl it be taped now , since then we have had delays with appointments , wrong departments and all sorts and have had to beg all the way , its like they give up when they see a certain age

    you do wonder what our hubbys would do if they were on their own . been appalling , we are both very bitter as you can imagine , and you go through the " maybe/if only, should we have emotions" but at the end of the day you accept and hope its quick and pain free,

    It must be so hard in a foreign country , hes 64 had to retire early , Im 59 work fulltime and care full time .

    the noise from breathing as the trachea closes is horrendous , and you want to scream shut up, then you feel guilty, he snaps at me for the slightest thing and you tell yourself this cancer is now going up to the brain it must be as theirs not a shelf above the neck to stoip it , so its not him talking ,  you make excuses all the time , I wlak away , cry one minute , then I think hey come on be strong and go back in .

    Absolute nightmare , I hope by now you have got some support xxxxxxxxxxx