Diagnosis and Chemo

Hi

My Mum has been dignosed with Oesphageal Cancer which is terminal as it has spread. The thing is she is in the first round of chemo and is unclear how many she will have before another scan to see what it is doing. She knows it has to be a minimum of 2 but they have been vague beyond that.  Most things about the diagnosis she has been accepting and positive about but she is finding it frustrating that she can't plan anything in terms of trips away, even though we have a short one mainly booked for December, it was organised some months before  this came up. When we mentioned the trip we got a less than positive response from nursing staff, suggesting that we should not plan anything that far ahead! My feeling is she needs little goals and things to keep her positive. We are not planning a year in advance because we can't at this stage but we just hope that some medical people will offer some positive response sometime soon. 

  • It isn't the nursing staff that has to live with this cancer every day. It is you and your mom. You decide to make plans and do what is best for the both of you, not what makes the medical team more comfortable. Especially if they are not being open and honest with you about her tests. My best wishes to you. 

  • Hi Ballawheels,

    First of all, I'm sorry to read about your Mum's diagnosis - I know from personal experience how devastating that can be. I was told in October that I might not see Christmas back in 2013, which is a good indication of how inaccurate these predictions can sometimes be. 

    Second off - has anyone actually used the word terminal? I ask because there is a subtle but important difference between a Stage 4 diagnosis and terminal diagnosis. So many people conflate the two and may give up hope at too early a stage. Also if anyone has specifically said her condition is terminal? It make make it difficult to get travel insurance (which can also be a pain if you haven't completed a planned programme of chemo).

    You might want to consider postponing the December trip (especially if it involves a long haul flight) until after your Mum's final round of chemo. I was on EOX chemo for the same condition and found that the side effects grew up over time - especially feeling exhausted - and I couldn't have coped with the stress of flying anywhere long haul. I did run away to Goa for a few weeks after my last round of EOX and came back for the results of the scan I'd had just before setting off.

    Best wishes and good luck!
    Dave

     

  • Hi Dave

    Thanks for your response. She is not coping well with side effects of the chemo. She has lost over half a stone in 10 days, due to not being able to hold anything in. She had constipation at first but now it has gone the other way. Eating and the thought of it is hard. There are loads of other problems which I would rather not discuss in public.

  • That's a shame, though not too unusual, especially alternating constipation and diarrhea. 
    For a while liquidised home made soup, smoothies and powershakes were all I could keep down. Small amounts taken frequently. Small pieces of chocolate and cake worked too.