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.

Hey Deggsy

I think that when it comes to it the Hospice guys will give you the nudge that you're getting to the last hours - but heep fuel in the car and your phone by the bed.

To be honest in my wife's last 36 hours or so she really wasn't conscious properly and drifted in and out, there was a clear point where she died but no clear last time "We" had together.

I think the last words we exchanged were when here blood pressure was so low the machines couldn't record it and it had to be done manually by somewone with a very sensitive touch.

"I'll get your blood pressure up" I said "I'm going home to mess with your art stuff" - the threat, even in jest to such a keen painter got her to open an eye and mumble "Don't you dare!" - that was about 36 hours before she died

Well I think it was Karl Marx who said last words were for fools who haven't said enough

I guess what I'm trying to say is that if the worst happens and you miss it there's a good chance that she really won't be aware so don't fret too much.

Sounds like you're doing pretty we'll she's very lucky to have you looking after her - I hope we all have someone as good   

Thanks Graham, 

Your comments are very welcome and allow me understand whst is going on.

My wife is going through a period on her roller coaster  where she is quite well and although she is aware of the situation is saying she is being positive and talking of fairly long term plans. This is confusing the family wondering if she is trying to blank out her situation. I know that she is more than aware.

Have you or anyone had experience  of a similar siuation?

I appreciate aĺl comments Regards

Thanks Graham, 

Your comments are very welcome and allow me understand whst is going on.

My wife is going through a period on her roller coaster  where she is quite well and although she is aware of the situation is saying she is being positive and talking of fairly long term plans. This is confusing the family wondering if she is trying to blank out her situation. I know that she is more than aware.

Have you or anyone had experience  of a similar siuation?

I appreciate aĺl comments Regards

Hi Deggsy

I have just read your thread and although my husband had a different cancer (Mesothelioma) he never wished to talk about his incurable illness (nearly three year journey) as it would upset him too much.  Instead he put his focus on the good things around him and spent hours in front of the tv 'to switch off. This was his way of dealing with it and like you say we have to respect that.  I also had to respect the fact that he did not wish to go into our local hospice and so we had community nurses when required at home.  Their understanding helped all the family when they visited and me especially to get through the long hours of his last five days. He was, however, communicative and 'with it' until around the last few hours and in his case a small 'alert' came at this time in the fact that he was unable to pass water and this was the only time I saw him pretty distressed. Thereafter he was calm and comfortable and the last words were asking if I was going to bed yet( about 10.30). I replied  that I would soon but if he was tired he could settle down (we had his bed in the lounge).  Of course I had no intention of going anywhere but I am pretty sure he thought I had left the room because soon afterwards I noticed a change in his breathing and I made it to his side as he slipped away.  Every experience is very personal (with my Dad I did not get to the  hospice in time but apparently it was how he wanted it  - he was always crafty at getting his own way!)

Nothing really prepares you for such a loss but this forum has been an enormous support to me and do come and chat anytime you need to vent those emotions that we try so hard to contain.

Be kind to yourself, Jules

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