How long?

  • 3 replies
  • 11 subscribers
  • 926 views

My husband has incurable bowel cancer and is receiving palliative chemo. I have asked the oncologist how long but he just tells me he doesn't know. I am finding this sort of answer extremely frustrating and wonder how others have managed to get a timeline from their oncologists?  I regularly see on the forums that patients are being told "6mths to 1 yr" but I cannot get a timescale of any description.  My husband is starting to get frustrated as well as he has a bucket list but has absolutely no idea, not even roughly, whether he is looking at months or years. He wants to know a very rough guide as there are things that he needs to make life changing decisions about and does not want to decide too early or leave it too late.  Can anyone relate to this situation and tell me how they managed to get a rough prognosis from their specialist?   Surely if they are experts they must have a rough idea from the PET scans and how the chemo is going.  Sorry to be so direct but we are seeing the oncologist again on Monday and I want to be able to tackle the oncologist and am looking for some advice.  The anxiety is so overwhelming it is causing us immense emotional pain as we just don't know when to start preparing ourselves.  Thank you for reading.

  • FormerMember
    FormerMember

    Hi Southern Belle,

    I hope you don’t mind me jumping up on here. I’ve moved away from this group a bit now as I lost my husband 3 weeks ago. He had stage 4 stomach cancer and died just under a year from his diagnosis. We never asked for a timescale and never talked about him dying. We just talked about his treatment and took things a week at a time. I truly think that kept him going for longer as his cancer was very aggressive and he may have given up if he knew a timeframe. As it was he fought to the very end.

    All the consultants we saw were amazing and the one thing they did say was that it is almost impossible to give a timeframe. They prefer not to I think because you are dealing with an individual human being and the human spirit. One person could decline very slowly and another could live way past an expected time. I know several people on the bereaved group who have lost partners within just a few months, and others after years.

    So my advice if it helps at all is to just try and concentrate on your husband’s treatment and if he had a bucket list just make a start. Life is just way too hard to predict.

    I’d also say never give up. New treatments are being developed all the time and there are clinical trials etc. The power of the human mind is incredible. Unfortunately my husband was too weak in the end but with call the problems he battled during his year fight I’m so proud of him that he kept going for as long as he did. He met his first grandson and we managed to have ana amazing two weeks away in Devon and Cornwall in between lockdowns, something I will always cherish.

    I wish you and your husband all the best xx

  • FormerMember
    FormerMember

    Hi Southern Belle,

    I am sorry to read about your situation, my mum has recently been diagnosed with stage 4  widespread lung cancer. They have given time scales of 3-6 months if It doesn't respond to chemo and 1-3 years if it does. Then another Dr said they won't say years, months and hopefully more months.

    I don't know how well your husband feels and what your areas restrictions are but if you can. Get doing all of your husbands wishes. Having received such a short possible time scale mid December I wish we didn't know over Christmas.

    Take care and reach out here of you need to.

    Xx

  • FormerMember
    FormerMember

    Hi Southern Belle

    I am so sorry to hear about your situation and the anxiety your are enduring.  My husband has incurable skin cancer that had metastasized to his brain and abdomen in 2015.

    His oncologist gave him 3 - 4 months to live. He had gamma knife surgery for his brain tumours and underwent two trials of immunotherapy.  The first trial did not work and the second one they pulled him off it almost at the end of the two years as he lost so much weight that they were concerned his organs were going to fail. 

    He is no longer receiving any treatments and undergoing palliative care. He has regular scans and the cancer is stable at present although we are waiting for scan results and things could change very rapidly. His oncologist and team that have been caring for him for many years have been amazing.  I completely understand the oncologist not wanting to give a timeframe as it is so hard to predict.

    Much love to you both.

    Danny x