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. 

  • Hi Deggsy

    Those precious moments lift the spirits for a while dont they. Keeping you both in my thoughts. Jules

  • Hi Deggsy so sorry to hear about your wife. I know the feeling of seeing your other half in pain. It must be hard for you. I lost my husband at 69 to terminal prostate cancer it was hard for a long time. And i hate to say it but when the worst happens were a community on here and we will support you we will support you now. Just be there till the end and keep holding her precious hand. hugs and support your way-Diane x

  • Well she still goes on, last night we had nice hour with me perched on the edge of the  bed giving her a cuddle,which she said she enjoyed. Today she has been asleep most of the time, not eating,  drinking enough but I don't think she can go on  much longer.  But who knows, the hospice are even asking if there is an anniversary coming up that she is targeting.

    Thanks for all the good wishes.

    Deggsy

  • Hi all

    Just to say that my wife is managing to fight on, she always enjoyed life and she is not prepared  to give it up easily.

    As far as I am concerned,  I came across an old news article which resonated with me and my situation. It referred to what they termed " virtual  widow/er" where a partner has literally been taken away but is still there. This isn't exclusive to cancer but the emotional problems are the same. Probably this is more so when the partner  is in care, the comments ranged in the article from, like me, feelings of guilt when your mind goes to your future and the way friends react to you often only wanting to talk about your partners illness. As one person commented having spent all day visiting and dealing with it you don't really need to discuss it endlessly. Other comments were that socialising stops either because you don't get invited on your own or you feel awkward about going out when your partner can't. 

    I cannot see anyone discussing this, there seems to be a number of people in this situation.

     

  • Hi Deggsy, I've stumbled across your post in an effort to feel like there is something, anything I can do or any information I can find as I sit and watch my mum slowly deteriorate. I felt compelled to reply as you posted earlier today. She was diagnosed with peritoneal cancer in November 2013 and 65 various chemo treatments later, almost 3 years to her diagnosis day, she started to be sick. Since then she hasn't stopped, despite various drugs and now, finally, a syringe driver to try to keep on top of it. We were told by the hospice nurse yesterday that her symptoms are disease progression so these next couple of days are her last at home for the foreseeable future (forever?). She loves the hospice though it is beautiful and you can roll the beds out onto the lake, particularly beautiful in the spring sunshine. Anyway despite rambling on I did have a purpose in writing, to say that you are not alone and, if there is any comfort, I am thinking of you and your wife.  Kat

     

  • Hi Kat

    I felt to reply to your post because my wife also had peritoneal and also went through 3 years 1 month of chemo with almost no symptoms and then became suddenly sick.

    We don't fully know what happened in her case but the sickness stopped and restarted 3 or 4 days later - this time she didn't recover - she didn't have a bowel blockage as such but I think from my research it was most likely a bowel shutdown and she went downhill amazingly quickly - I'm grateful for that she never wanted to be immobile and dependent - she was terrified of that.

    Actually - this is a bit emotional now I'm remebering again - but I think the last, best thing I was able to do for her was to get the hospital team to stop the anti-biotics that were just slowing the inevitable.

    I don't regret it for a moment it was a hell of a decision to take on your shoulders but I know she'd have thanked me for it.

    I hope neither you or Deggsy need to make a decision like that - but maybe you should think about what you'd do 

  • Hi Deggsy

    What an amazing fighting spirit your wife has.

    The virtual widow/widower article would apply to many here on the forum I think.   My own hubby was terminally ill for nearly three years and peoples attitudes definitely changed towards us as a couple (except for those exceptional friends and of course, our children, whose support and love  will forever be held dear). Some relatives even gave him a wide berth as they could not cope themselves with seeing his decline.  Finding this forum community 'virtually' kept me going and is why I still feel part of it since his passing. Some individuals just seem to think if they do not talk about the illness/death it wont affect them - sadly they are wrong and we all have to face things we would rather not and offer love and support to others in times of need.  Thank you for taking time out of your loving and caring role to update your thread.  Wishing you and your wife a peaceful and comfortable day.  Jules x

  • Hi Graham, thank you so much for your reply. Although it's so sad and I'm so sorry to hear your wife had to go through this, it is reassuring for us to hear that she had the same symptoms as my mum and her PPC. We've spent 3 months debating the sickness and the reasons behind it despite the professionals being quite blasé about it all, although now I think that was for our benefit as they knew that it was the beginning of this process. She has slept all day apart from waking 3 times to be sick and we're hoping the hospice has a bed available tomorrow so she can be where she wants to be for however long she has left. thank you for preparing us for the idea of making those decisions, we have felt so in the dark for the last few weeks (and full of unrealistic hopes I suppose) it is nice to see things a bit clearer. I do believe you come across things online and in life as and when you need them and I'm so grateful for your reply. Kat

     

     

     

     

  • Thanks to Jules for the comments, yes I think we all find the the same reactions and through this chat and the help of staff at the hospice we can understand and cope.

    Regarding the sickness related to the cancer, ĺike Kats mum, my wifes sickness became so bad that it was impossible to control at home. Once admitted to the hospice they were able to cope with it, despite, like Grahams wife, her bowels have varied between blocked, partial blocked, shut down, and working, changing as often as the weather. She now has two drivers giving mainly nausea relief, apparently a cocktail of all the available drugs which unfortunately causes her to be very sleepy but keeping her comfortable. At the moment she does not have any infection so antibiotics are not required, but she made it clear once she was told there was no more treatment  that she did not want any treatment other than palliative care, so that decision she made for herself.

    I hope your mum gets a bed Kat and I hope you can take the chance to talk to the doctors etc as I have found the hospice staff so supportive. 

    Best wishes and thanks 

    Deggsy