Head full of questions and can’t talk to anyone

I have accepted my diagnosis of ampullary carcinoma but I am struggling to deal with life expectancy after the operation. My family and friends are amazing and I couldn’t wish for better support but I don’t feel I can talk to them about this. I feel the need to plan ahead, to take control of the time I have and having googled the diagnosis I get the impression that this may be around  5 years there’s little information past this or am I interpreting it wrong? 

  • Hi there ..so sorry your going through this heartbraking time. . You sound confused and wanting answers .. unfortunately most people , even trained medical people can only say an average .. googling life expectancy is scary .. I looked my self once, never again ... 

    I can only tell you my views .. and remember everyone's different .. so hopefully your get different opinions .. but some live far longer the expected .. some quicker ..

    I look at life now as every day is a bonus .. and I'll do as much as I can to fill that day with those I love .. block miserable ner do wells out of life ... I look at everything with new eyes and see the wonderful things around us .. my mum died suddenly with a heart attack ... not realising when we chatted on the phone one Monday morning.  .. that she'd be gone by that evening ... no time to even say those things , like how proud I was to have had her for my mum. .. 

    So in my outlook, no one is sure what tomorrow will bring for anyone .. so live each day to the full .. but I know at my age it's Easier to look at life that way ... so I'd say .. live In the day .. would you really want to know when and have that over your head ... if I go tomorrow or next year or however long... I'll know I packed as much life into every day as possible .. 

    Chrissie xx

  • Thanks Chrissie

    I am sorry about your Mom, and I totally understand your views - 20 years ago I lost a younger brother (he was 23) very suddenly and I too decided on that day to make the most of every day, to distance myself from toxic people and cut out unnecessary drama.

    I have the best support, my family and friends have been amazing. Some have researched the diagnosis and are aware of the prognosis but it’s a bit of an elephant in the room. No one wants to upset anybody so we don’t discuss it and the consultant was reluctant to enter into it.

     

    I am about to turn 52, I am currently on sick leave and trying to work out what to do long term after the operation. I suppose I am one of those people who need a plan deep down maybe the decision has already been made. I am normally fit and well so hopefully I’ll come through the op fairly strong. I just want to make the most of whatever time I have left with my family and friends and need to know I have everything in order. If my time is short i don’t want to be working at the expense of quality time with loved ones and miss out on opportunities to see and do things that I had hoped to be doing in retirement. 

    I didn’t realise that even if the op was successful and all of the cancer was removed that the life expectancy could still be so short. I have 3 children in late teens and early twenties and I never anticipated not being around to see them get married, have children  ... 

    As you say... I am confused and there are probably no right or wrong answers.

    we never get over these things but learn to live with them as best we can. Talking helps and I thank you for taking the time to share your experience and thoughts. Your mom would be proud of you for sharing.

     

    Sue

  • Hi there again ...

    Just wanted to say something I missed ... I was diagnosed with a grade 3 breast cancer in 2017 .. so although I told you about my mum that was 30 years ago this year ...

    My outlook is after my diagnosis ... my journey ... as I said it's just personal to me .. and everyone sees things differently ... it's how l go from day to day ... but that's why I said , I hope you get other points of view .. others journeys to ... they are all different ..

    Fingers crossed you find all the answers your looking for ... Chrissie. .

  • Hi sue

    have you joined a group called whipple warriors UK ? 
    I think you will find that many are living longer term than the dreaded statistics we read x

  • Hi sbc only just noticed your string don't know if your still on forum hope you're op went OK, just another example for you I've prostate cancer it's gone to lymph nodes, spine, ribs, pelvis and a lung it's noncurable. It was diagnosed Feb 2016 i. Had 6 sessions of cemotheropy. And was told I'd need more before end of the first year I'm still waiting for that session and it's over 3.1/2 year's I've got a normal life still getting older, sometimes things even baffle experts, they only guess anyway,. Hope you're feeling OK. Best wishes.. Billy

    P.s Google is the worst thing you can do please ignore it..