Hello

Long story which I will keep short as possible.  My family has a history of cancer, 3 grandparents, 2 great aunts, a great grandmother, both parents (my mother twice, but it didn't kill her).  In the past three years I nursed my mother-in-law through liver cancer at home and was with her when she died.  My husband had non-hodgkins lymphoma for 6 years and I nursed him at home and was with him when he died. During this time I was also looking after both my parents, my father died with many little strokes.  My mother didn't cope at all well and needed a lot of support.   6 months after my husband died, my younger brother died with a cerebral heamorage and a year after him my mother died, she just gave up, - I tried to look after her at home but she was just too ill and was in hospital. I tried to get her home, but they said the journey would kill her. About a year after she died I was diagnosed with kidney cancer.  I had my kidney removed and have had my first 3 month scan which was clear.  I was able to be strong through all of this, caring for everyone, doing the funerals and sorting out the estates.  When I was diagnosed I didn't tell anyone until the op and even then I didn't tell my children what the diagnosis was.  They had been through too much already.  They found out when the consultant told me they were pretty sure they had got it all.

Now I find myslef crying at odd times.  I never cry - or at least I didn't.  I cope, that has always been my role, but I don't feel that I am right now.  I wondered if I just didn't have time to grieve and this is it leaking out.  Has anyone else had a similar reaction?

  • Hi Suzanne,

    Welcome to the forum. Wow, you really have been through the mill over recent years - no wonder your emotions are all over the place. I can understand why you didn't share your bad news with your family until the worst was over, but that must have added to your stress levels too.

    My guess is that you've hit the nail on the head and that your mind is only now allowing you to grieve for the family you have lost and also for yourself as part of coming to terms with having cancer. My own emotions seemed to shut down when I was first diagnosed. People thought I was being brave, but that was far from the truth - I was simply numb. Chatting to other people on here has made me realise that this wasn't an unusual reaction. 

    By coincidence I was working for an NHS MH Trust as a manager until late 2014 when I took ill-health retirement. Even now, it feels strange being in NHS buildings as a patient, rather than as a staff member. 

    Best wishes
    Dave

  • Thank you, both of you.

    I have been thinking about this since coming to this forum and I also think there is a bit of survivor guilt in there.  Why should I still be here when everyone except my children and neice are gone?

    When I first got the diagnosis it was a bit of a relife.  I've always thought it would be how I die because of the family history.  I won't say I was looking forward to it, but it seemed right in a way.

    I was worried about who would look after my dog and how my kids would cope and that was the overwhelming thing in my mind.  It still is.  I know they will have to cope with it sometime, but I'd like them to have a bit of time to cope with the losses so far.

    I am now owrried about screening for my kids.  Both parents and 3 grandparents with cancer plus all the other extended family dosn't bode well.  I am not sure how to talk to them about it or how to move it forward.  My mother had genetic testing about 10 years ago because of her family history with bowel cancer (she had that and recovered well) and there were no markers then, but testing has moved on.  I am also not sure how useful it would be for them.  Anyone any ideas or experience?

  • Hi again Suzanne,

    I can relate to the survivor guilt aspect, all I can say is be grateful and live your life to the full. I realise this may sound like a platitude, but I've been on the vino collapso and that's how I feel :-)

    From a professional point of view (I'm in Health IT), if you can hold off on genetic testing for a year or so - so much the better. The world of genomics is literally on the edge of a major change. Genetic sequencing which cost £1m ten years ago is now down to £1k and, if the cutting edge software I've seen recently delivers on its promise, may be down to a tenth of that within a year.

    Strangely, my Dad said he'd always worried one of his children would get bowel cancer because my Mum, her brother, her Dad and two Uncles died of it. Instead, I got Oesophageal Cancer. There may be a genetic influence but, without exception, my Mum and all the other relatives were all nicotine addicts - which can't be ruled out as a cause rather than genetics :-) 
    Ironically, I come into the "never smoked" puritanical "workplace secondary smoking ban now!" category and I still developed a cancer. Maybe I was right about secondary smoke? lol

    My wife has promised to look after our dog, so I'm OK on that front :-)

    On that happy note - have a great Easter.

    Cheers
    Dave