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. 

Parents
  • 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.

  • 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

  • Thank you for your reply Deggsy, we got her into the hospice yesterday and can already see an improvement in her symptoms, she managed to eat an ice lolly for the first time in 2 weeks and looks so restful. They've altered her meds and included a mild sedative as she was becoming quite anxious about constantly being sick, which has contributed to the sleepiness but, as I'm sure you and graham have felt, anything is better than the awful sickness. It's a relief to see her relaxed and the hospice is so lovely, so I suppose its just a case of each day (or hour) at a time now.  I will be thinking of your wife and your family on your similar journey. Kat 

     

  • Hi, Degsy, I took on board what you said and my daughter got in touch with my GP.  They had said they sent a letter of referral to the pain clinic at the hospice in December but, apparently they never did.  My daughter contacted the hospice and the upshot is they are coming to visit me next week.    They have also arranged for the district nurse to visit also.  As an interim help she sent a prescription for codeine to my pharmacy. 

    Of course, I am not holding my breath I will believe it when I see it..

    May I ask Deggsy,is your wife's peritoneal cancer a primary?  Mine has metastacised from endometrial.

    I do hope that sheis still peaceful and that you are both coping with a difficult time. x

  • I'm really glad to hear that they're getting you some proper pain relief Pauline I'm sure they'll sort you out this time.

    And Kat the hospice sounds lovely - I thought they were going to get Melanie into one but we just didn't get the time in the end.

    Hope things are as good as they can be Deggsy

  • Firstly Kat, glad to hear you are now getting the help from the hospice. Yes our local hospice although charitable is wonderful and will be even better when the old hospice building is modernised to the standard of the new wing.

    Pauline,glad things are progressing, palliative care nurses can be fantastic. Although we cannot fault our GP the palliative care community nurse made a lot of the decisions about medication and on one occasion the GP admitted to learning from her expertise. 

    Yes her peritoneal cancer was primary,  they thought it may have started as ovarian, but when they operated they removed her ovaries and they were ok. When it did return it was in  her liver.

    As to her condition, she has moved on, I have spent a long time at the hospicè today, spending time with her. As Graham said her breathing pattern has  changed  and now we expect the end soon. I could have stayed overnight but the nurses said knowing my wife she was looking so comfortable that she could go on another day and looking  out for me they suggested I would be better getting a good nights sleep.

    Thanks for all your wishes 

     

    Deggsy

     

  • Hi Deggsy

    Just wanted to let  you know I am thinking of you, your wife and family. We also found the cummunity and palliative care nurses of enormous support and a wealth of knowledge during my hubby's last weeks.Jules x

  • Just to say Deggsy I am thinking of you all today, take care. G

Reply Children
  • Hi all,

    Thanks for your kind thoughts, home again tonight, wife ( Gill ) is still with us and the nurses say she will do things in "Gill time".

    I can come home knowing that the hospice is giving excellent care, a nurse will sit with Gill all night.

    As all people who have gone through this will know, you want to be there but at the same time you don't and whatever you do you you will doubt if you made the right choice 

  • Dear Deggsy

    My thoughts are with you and Gill. The greatest comfort at such times is knowing that you were rested by the fact that your loved one was in understanding hands and there is no right or wrong way to be at times like this.  I hope Gill had a peaceful night and that you managed some sleep yourself.. Jules x

  • You're really right about douting your decisions at these times Deggsy.

    You get really conflicted when it's so emotional and you get so tired.

    Part of me wanted to get it over with and then I felt guilty about thinking that, I re-ran decisions I wish I'd made like wishing I'd called an ambulance a couple of hours earlier even though I know it would have made no difference at all. Should I have called the children earlier while she was more concious?

    In the end I realised that all of this was just stuff going on between my ears and didn't really matter and I just needed to put it to one side and get on with dealing with what was going on at the time.

    If your and Gill's experience is like mine and Mels, and it sounds as if it is, she won't really be aware of anything much now so whether you're there or not won't make much difference to her.

    Sounds like you've done a hell of a lot to make sure she's been well looked after so do what more you can and whatever happens will happen and don't let the guilt monster grab you 

  • Thanks Graham,

    News this morning is that Gill is still with us. I told  her last night that all was well with me and the family and that we were all prepared for her to go, so now she could stop fighting and just find peace. I talked to her for a little while forgetting the nurse had said she would bring me a cup of tea. As I  finished I realised the nurse must have been stood behind me with my tea, tears streaming down her face. That's how wonderful this hospice has been.

    Like you, part of me wants to get on, but I know I can't until the time is right. As I have said elsewhere I know what is going to happen after I lose Gill, having  lost a previous partner but in very different circumstances, this has been much harder than suddenly losing someone. It has been made easier by being able to talk to friends who have been there. 

    Thanks again,  must get ready to go back to the hospice.

    Deggsy

  • Deggsy your wife has some strength in her to keep holding on after you told her everyone was finally prepared she can finally go. It makes me want to give you a big hug. When i lost my husband i found support helped me a lot as it was very hard to get over death by your self. There's nothing we can do but move on when we have lost a dear family member or our other half. I was with my hubby for 54 years it was hard for a long time and i cried many nights but i got there. And like you said sadly its happened to you before though in different circumstances. Hugs -Diane x

  • Deggsy

    The conversation you had with your wife was similar to the last words I spoke to my husband. A peaceful release for those we love brought a little comfort in the difficult days following the deep loss. Sending hugs and keeping you both in my thoughts. Jules x

  • Thanks for your posts and hugs virtual or real certainly help.

    Well the waiting is over, Gill passed away peacefully this afternoon at 3.20 with me and her daughter by her side, I was able to give her a cuddle as she took her last few breaths and I hope she was aware I was there for her.

    Now I will be busy, being practical is my forte, so I will immerse myself in all the arrangements etc.

    Will try to keep posting

    Deggsy 

  • Aww I'm so sorry for your loss deggsy. She's at peace now and you can take a step back and hopefully relax a little bit knowing she's fine. And i have no doubt she knows you were by her side. Hugs -Diane x

  • My condolences on the sad loss of Gill. Be kind to yourself in the coming days and the forum is here as and when you feel able to post. Jules

  • Hi Deggsy,

    All of us at Cancer Chat would like to echo the sentiments expressed by our lovely members. We have been following your story day by day and we are so sorry to hear that Gill passed away this afternoon, but it's nice to hear that she was surrounded by you and her daughter. I have no doubt that she could feel all that love that was around her. How moving the way you describe giving her a cuddle at the very end. 

    Our sincere condolences to you and your family,

    Best wishes,

    Lucie, Cancer Chat Moderator