Dealing with the waiting

My wife was diagnosed with peritoneal cancer in Oct2014 and after struggling with bowel blockages and  having chemo was told that she was clear last July - Aug. She then had respiratory problems, non cancer related,  and had a ct scan t,his was seen by the oncologist  at a follow up who then told us the cancer had returned. Although chemo was started my wife became worse and eventually on christmas eve was admitted to our local wonderful hospice. With no surgery or chemo available and her bowels again blocked she  was given "  short weeks". She has battled on and improved in that her bowels started to work again and managed to celebrate her birthday on the 24th Jan but the future is certain but the timing is not. I am 66, my wife now 63 with 3 grown up children ( late 20s) with their own lives. This time where we all visit daily waiting for the inevitable is one of the hardest things I have ever done. We deal with it day to day as although she is visibly getting weaker and weaker there are good days when we can have conversations and interaction  and days when we are just there holding  her hand.

As I  said this is the hardest time and although I have good friends who try to support it can be very lonely and worrying for the future. 

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  • Hi Deggsy I can completely relate to this

    My wife died of primary peritoneal cancer back in October. She was at high risk of ovarian cancer and had had a hysterectomy to prevent this so when she showed up with symptoms but no ovaries it was very confusing for all until PPC was diagnosed!

    Amazingly she had few symptoms until the last week - never seemed to be an actual blockage but the best guess seems to be she had a bowel shutdown then an associated infection which she was unable to throw off with a compromised immune system. And yes her last 2 or 3 days were the hardest thing I've ever lived through.

    All I can say is be there for her, make sure she's as comfortable as possible and gets the pain relief she needs - ask to talk to the palliative team at the hospital they can help you in this and can explain what it will probably be like to be there when it happens so you know what to expect - I found that took so much of the worry out of it for me.

    Don't worry too much now about afterwards - you'll have a lot of grief as so many of us on here have but your friends and familly will help and so will people on here

    spend these last days with her well, if you can, try to take her mind off it a bit and be strong for her so she's not worried about what will happen to you when she's gone.

     

    And stay with us on line and we'll see if we can't help you pick up the pieces 

  • Thanks Graham,

    My wife is recieving the very best care that anyone could wish for at our local hospice and the staff are there  for all of  us and as you have said have prepared us all for what is going to happen. What I didn't say was the prognosis of short  weeks was given when she went  into the hospice on christmas eve and here  we  are at the end of Jan. she's a  real fighter. Living with the fact that there is no long term future and trying to make every day  special has been hard and then coming home each night wondering if that will  be the last time I see her, over such a long time causes me to question so many things.

    I will keep posting as it does help to keep my emotions in check

    Thanks again.

  • That sounds very familliar Deggsy - My wife used to say shed make a very good ostrich!

    Being in denial works very well for some people - as long as it doesn't get to the point where they start to refuse treatment and think that positie thinking is all that they need and it'll go away then just go with it!

  • Hi, Deggsy, have had a few exceptionally bad days where getting out of bed or off the sofa has taken a major effort. If I do have a day when I am not too bad I start to think I will be okay, probably a bit like your wife.  I guess it just gives you a little bit of hope, when really deep down you know there is none. You say that you think your wife is being positive but you know i do that too, just because we have to have hope, even though deep down we really do know there is none. And would you not want to blank out reality, too. Please dont take that away and, perheaps, take your lead from her. I have always refused chemo as I didnt want to compromise my immune system and have the awful side effects of chemotherapy.  I have never been sorry for my decision and as I know the outcome of this disease will not put myself through treatments that will maybe make me feel worse.  

    I am thinking of you all and wishing you the best.

     

  • Thanks to you all for your comments, finding that others have similar and different experience is such a help.

    My wife is continuing on her roller coaster journey, yesterday was a bad day but who knows what today will bring. Latest news from the doctors is that they are surprised by her resilience and although it is not unknown, she is unusually kicking the trend. They feel that, although there are no promises, she could go on for weeks yet. This is great that she will be around but my concerns are about her quality of life and the effect on the family.

    Thanks for making me feel that I can talk to you all.

  • Just an update,  my wife is fading, conversation is very difficult and she is getting more confused. I visit and hope she gains comfort from that.

    If she doesn't, I am reminded of this story. 

    A 70 year old man was talking to his doctor. He told him that every day he went to the nursing home at 7a.m. to have breakfast with his wife, although she could recognise him or remember that he was there. The doctor said that if she did not know who he was why did he get up so early to visit her. He replied " Because I know who she is "

     

    The drugs are, I am sure, are now taking a cumulative toll  and my wifes comprehension is suffering. I have very mixed felings about what the next few days have in store.

    Thanks to anyone who reads my ramblings

  • Hey Deggsy

    I said you'd know!

    Even if she doesn't know you're there you've one last important job - Make sure they keep her pain free with the medication, you'll know if you need to draw their attention to it she may start to grimmace or become unsettled.

     

    Best of luck and stay strong

  • Graham is right. And my biggest fear is to be in terrible pain.  Have been waiting 6 weeks for an appointment at the pain clinic at our local hospice.

  • Pauline,

    So sorry to hear of your wait, our local charitable hospice has been so good I tend to think  that they all are the same. My wife was referred to the pain clinic very early on and therefore has been on their radar for some time, so when managing  symptoms at home became difficult she went immediately to  the hospice. The staff are all brilliant and can spot the signs and give medication straight away.

    The most reassuring thing for my wife was the day that her GP held her hand and told her not to worry about pain and he promised her that no matter what she would not have to suffer pain. To this day she has only complained of mild discomfort. 

    Hope you get an appointment soon.

  • On Deggsy, all I have ever asked of doctors is that I don't die in pain and yet I am still trying to manage with paracetamol and ibruprofin, I know I frequently take too many because I have so much pain, my mind is a bit addled and I cant remember when I last took them.  So many times the Macmillan nurses have promisedto contact me, but haven't, so I have now given up on them.

    I am so pleased you have a wonderful hospice for your wife and that she has good pain relief.  Thar's what we want for everyone. 

  • Hi Pauline,

    I'm rather shocked to hear that you're struggling with pain and over the counter medecines

    In your position I would take myself down to my GP and tell them this (possibly ommitting the bit about getting muddled) they could at least prescribe you some slightly stronger pain relief like codeine while you are waiting for the pain clinic - that doesn't sound like a big ask for someone in your position 

  • Yes Pauline, I am shocked that you are having to cope with over the counter meds. Get on to you GP and get something stronger and get a referral to your local palliative care team, they are the experts when it comes to pain control.

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