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.

Thinking of you, Deggsy. 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

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

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

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 

Thinking of you Deggsy

Not a great way to spend Valentine's day eh?

Thinking of you, Deggsy, this is such a very hard time for you.  I wish both you and Gill much peace. x

Gill made it through the night, a real survivor. 

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

Thinking of you Deggsy you wife is some fighter. Hope you can find time to relax even though this is happening at the moment -Diane x