Stage 4 - Oesophageal Cancer

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As a family, we have been given the devastating news that our dad has been diagnosed with stage 4 Oesophageal Cancer. Surgery is not an option. Immunotherapy is not an option and we've been told the prognosis is months. This is a massive heartbreak for our family as our dad is currently fit and well and you'd have never guessed he has a deadly tumour growing inside him. Unfortunately the care he has been given so far is appalling. His first chemotherapy session has been constantly delayed due to some test results not being back. These tests were delayed due to a careless human error of someone not ticking the correct box and sending them off in time. No one has took responsibility of this and we've had to chase them up for an update. The only time we hear from them, is when ring them. When you tell someone that they have months to live, how can you allow 6 weeks to pass without treatment?! Me, my mum and sister all work for the hospital he's at so it's a kick in teeth. We've had to go down the PALS/complaints route. A formal investigation is currently happening and we've finally got a date this Friday for his first chemo session. However, all the chemo in the world wont change the prognosis and i cant bear the thought of him not being here this time next year. My dad is the eternal optimist but behind closed doors he's been breaking down over how he wont see his grandkids grow up and how scared he is. I feel numb with emotion if that's even possible. How are people expected to carry on with life whilst coping with this?

  • Hi Palladium

    I am so sorry to hear this devastating news. Your world has been turned upside-down  and you are still dealing with the shock of this awful diagnosis. I have been there too, when my husband was diagnosed with the same in early Dec 2021, just 3 weeks before Christmas and shortly after our daughter had just announced her 1st pregnancy. His chemo was also delayed due to Covid backlogs so it didn't start until late Jan 2022, 2 months after his initial CT scan.

    But when you say "How are people expected to carry on with life?" that is exactly what you absolutely have to learn to do. Put your energies into doing this. Yes, be proactive with the NHS but more importantly, get behind your Dad and make sure you do everything you can to make sure his life has purpose, direction and things to look forward to. No-one knows the future. Don't go there right now. Try the mantra "Live in hope, not fear".Things might be bad, but they might not be as bad as you think.

    If you want to follow my husband's story to date, read my blog called "Our Battle with Oesophageal cancer". I have learnt that everyone is different and responds differently but it's always helpful to know you are not alone and that even in the midst of the most dire situations, solutions can be found.

    I wish your Dad all the best with his treatment. By all means message me if you have any questions and if I can help in any way, I will.

    By the way, my husband's 1st long-term goalpost was to hold his grand-daughter in his arms - and that happened nearly 2 months ago :-)

    M

  • I really feel this post as I'm also in a similar position my dad was diagnosed in August we were told it's was treatable T3N0M0 the weeks later told that actually it was not properly staged and infact he has cancer in his nodes and it has metastasised we were told heartbreaking he has 6 months without treatment which hasn't started yet due to all the things you mention there, he needs a blood iron infusion and we are still chasing and calling and trying to get this booked, all of this adds stress and if infact he does have 6months it's sad to see that we have spent these two months doing nothing 

  • Hi Lavie0703

    I am so sorry this is happening to you all, and that your Dad has been given such a prognosis based on the new staging of his OC. 

    It is difficult to remain positive when trying to get things that should be simple organised and yet it takes ages for it to be done. 

    My husband was given a very poor prognosis, 4 months without treatment, he has been having the treatment and it is now over two years since he was first diagnosed. I do hope your Dad experience some positive treatment results and that things turn out not to be as bleak as that which has been seen so far. 

    Best of Luck

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Thank you Lowedal I'm new here and your reply really along with reading others experiences has made me realise joining this community was the right thing to do. I wish your husband continued health and thank you for sharing your light xx