Totally in awe of my wonderful Husband!

[Guest]

I hope you feel a little better and a little recharged to carry on the fight PW. Only you know your husband, and what is right for you both. I have no doubt that you will only do what is best for him. You are a loving wife, and your love for your husband shines through. He will know how much you love him. Love is so very important.

Wish I could something to help you both.

Sending you both love and strength.

Leila xx

[shelda]

Oh P, I'm so sorry to hear all this, I knew something wasn't right when I didn't hear from you on email. Poor Mr P, I am sending the 3 of you the biggest of hugs, it's such a scary horrible place to be, how we manage to get through it is beyond me, but always know the support on here is unwavering and each and everyone one of us knows exactly how it feels. Since this horrendous experience it just shows how inconsistent PC care is and I know when I feel stronger I'm going to be making complaints to our primary care trust for certain issues with mum, but certainly don't expect it from private healthcare.

Anyway I'm here if you need me, I'll email you my mobile number, then you can text me, day or night. Lots of love xxxx

[Ant11]

Dear PW, you are all in my thoughts and prayers and I probably cannot add much to what has already been said. This vile disease is such a roller coaster and all the best laid plans are thrown out. Go with your gut feeling, never have any regrets and certainly do not beat yourself up. You have fought so hard to be where you are now and will continue to fight the system. I honestly believe the forum members should have a rally and raise awareness, nobody seems to understand what this disease does to loved ones and families. It absolutely rips you to shreads. Nobody on this earth should have to fight and suffer like those who have passed over and those that are battling with everything they have. Unfortunately as soon as the word PC is mentioned they are written off, especially when it has spread. Sorry to rant on your post PW but I know you will understand. You and so many others on here have been amazing support and it is "priceless". I feel bitter an angry that nobody seems to care in the health sector. Sending you hugs and strength PW you are in my thoughts. Love Annette xxxx

[Linda G]

Dear PW, I am so pleased you are able to be at his side. It gives you the opportunity to be his wife rather than his nurse/carer. Knowing he is being cared for gives you the chance to rest a bit and recharge your batteries. I agree with Annette, people with no direct contact with this horrendous cancer have no idea how bad it really is for the sufferer and friends and family. Sending you all love and strength. xxxx

Linda G

[Proud Wife]

I wish I could address you all individually but I'm now staying in some self catering accommodation for families In the hospital grounds and WiFi is really slow here.

What a day. A rollercoaster. Let's see what tomorrow brings. All I do know now is that he is very poorly from the infection and not the cancer. His suffering since the end of April when he first really became unwell is purely down to the pseudonomas infection so of course if the results of his sputum sample were not overlooked and the right antibiotics given 5 weeks ago, I'd be sitting at home with hubby right now. We thought it was the gem/abraxane making him so unwell, we now we know otherwise. Such unnecessary suffering and also decision made to stop chemo when it could have continued in all reality.

Words fail me xx

[Proud Wife]

You are absolutely right though. I said he'd been written off because he's got metastatic PC. Such negligence which I will fully address at the appropriate time. I spoke to hospital director today and she could not tell me why results overlooked but I think she realises the consequences of this.

[Guest]

Morning PW,

Words fail me too but as usual you are quite right, this time is for you and your husband and you can deal with the repercussions later if you want to. I hope you are happy with the care he has now and that you are getting some rest.

We are all praying to our Gods for you and wishing you both well xx

[WifeampMum]

PW, I really hope your hubby's infection sees an improvement today and that you are able to enjoy some peaceful moments with him. Love W&M xx

[Linda G]

I hope he starts to pick up soon. It sounds daft but I'm glad its the infection and not the PC. Hope you are managing to get some rest now. Now you have made it very clear he should get better care - it should not be like this but past experience proves it is. Me and Stewart and Leila and her Dad suffered as a result of substandard care. Once you make it clear you are aware of lack of care it does seem to improve. Hopefully you will both be back home soon and continuing to fight. Take care.

Linda G

XXX

[Proud Wife]

What a rollercoaster. We all say it but with PC it's so very true. I arrived at the hospital at 9am to find hubby his normal self so I told him how desperately ill he'd been with the infection. I could not believe how good he was. By the time I'd left him tonight he'd started to ramble again. Doing weird things. I don’t know why but I found that so terribly distressing to witness. My hubby is intelligent and multi lingual. Normally.

I am not going to say too much about the pseudonomas infection at the moment. Oncologist said hubby's decline is because the cancers getting worse. I just don't know and now is not the right time. He said he didn't have pseudonomas despite the sputum test showing heavy signs of it. Explanation smokers will have high levels. Hubby smokes.

Tomorrow is another day. Normally I am a huge big brother fan but I just couldn't be bothered tonight. I've spent the evening going through photos on my phone of hubby both throughout the PC journey and before and the changes are just incredible.

I am so very very very very sad tonight. And resigned.

[Proud Wife]

Again on the subject of sub standard care, it's because PC has such a dismal Outlook pure and simple. The same effort is not put in to extending life that other cancer sufferers may get. If I had a penny for every person who says it is an evil disease on the ward, I could retire comfortably. Xx

[Dandygal76]

I feel for you both and sending you hugs. Did they say why they was giving him antibiotics then? Is he still on them? The mixed messages are really not helpful at what is an already distressing time. I am glad you had a little normal time today and fingers crossed for the same tomorrow. x

[Tinlady]

PW

Thinking of you

Tinlady x

[boa]

PW, I truly understand your sadness. You are so right. All cancers are horrible but pancreatic cancer is particularly nasty and it seems to be very unpredictable. Unfortunately, what seems to happen is that as the disease progresses infections can occur for no apparent reason. My husband was twice hospitalised with what seemed to be infection but tests showed nothing there. I found it very easy to dwell on 'what ifs' so tried hard to accept what was happening. Like you a hard part was seeing a clever man rambling about things and worrying over simple issues. I send you warm wishes and empathise with your deep sadness and your resignation at what is happening. Catherine

[Sueoliver]

Hi PW,

Just to let you know I am thinking of you. I know how awful it all is sounds similar to my Mum. Stay strong and take care.

Love Sue xxx

[Ant11]

Dear PW, you are all in our thoughts and prayers. It truly is a sad time having been on the same journey. They say it's okay to cry it is a way to wash away the sadness. The ups and downs of this vile disease are just too much to deal with at times. Annette xxx

[Proud Wife]

Yes he's on antibiotics for a urine infection and also the ones that work against pseudonomas. That doesn't make sense but At this late stage I don't think it makes a difference. Today wasn't a good day. Hubby very sleepy and not as lucid as he's been. Was taken to one side by Macmillan nurse to be told his condition had deteriorated since yesterday.

For those who have crossed the divide, when your loved one was fading and couldn't drink, we're they given fluids? I'm just trying to make sense of what they are telling me now. They say the end is near but to me he doesn't look that ill. Perhaps it's just wishful thinking and I'm in denial? I've read up on end of life signs but can't see them.

Tonight I feel very scared. Yes I know the end is coming but I'm finding it hard to accept he's only gone seriously downhill since Saturday. 8 days to our sons 21st. Please everyone say a little prayer for him tonight that he can hang on in there. Xxx

[Paige]

Hi PW,

I am so sorry to hear how bad things are, no matter how much you try and prepare yourself it is still so hard to accept what is happening and especially when things seem to suddenly start to go on a downward spiral.

In terms of infection, this alone can make someone very ill and out of it, especially if dehydrated. Is it the infection they feel they won't be able to get under control or are they saying the cancer is the reason for his sudden deterioration? My Dad was on fluids for 5 weeks in hospital but as soon as it was decided there was nothing that could be done for him these were stopped, we had asked a doctor from the hospice about the fluids and they said usually not having fluids does not cause discomfort as long as the mouth is kept in good condition by moistening it or if the patient is able to by taking sips of water but obviously someone can only survive so long without fluids. Obviously I am no medical professional but I do feel a bit confused if your husband is still being treated for infection with antibiotics and they aren't giving fluids, again with my Dad fluids were only stopped once he ws no longer being treated to be kept alive. A few days after fluids/intravenous feed was stopped my Dad started to experience some confusion.

So sorry PW, this disease is vile and relentless. I will say a prayer for your family tonight.

Thinking of you.

Paige

Xx

[Dandygal76]

I hope he has a settled night and you get a little sleep. I think those that have been through this will have more comforting words than I can give you. But I am thinking of you PW and sending love to you all. x

[Guest]

Hi PW,

Just read your update. I really didn't realise your husband was at this stage.

I understand it is hard to accept. Even though we know this will happen from diagnosis, it is still very hard to understand.

When my Dad was in hospital, he was nil by mouth but was receiving constant fluids through IV. It was causing swelling, and they asked me to consider stopping fluids. The macmillan nurse told me the end was near as Dad's neck was a bluish colour. I didn't notice this colour. Dad was still still looking healthier than I was. I am very pale. His breathing had changed though, he was quite fast, did 2 breaths to my 1.

Sorry as well to read the lack of care you are both receiving. I hope with you staying there, that this has improved?

These times are so very very precious, and I am so sorry that you are in this position. My genuine love and thoughts are with you both.

Leila xx

[Proud Wife]

Page, that's a very good point. I'm not sure. The problem is,I am so out of it, I struggle to absorb what they are telling me.

They see him declining. They say it's the cancer that's taken hold. I think I can believe that as I think can now see and feel the mass in his abdomen. Yesterday was the turning point and he was good so we thought antibiotics were working But he's been very sleepy today. However he could have been exhausted from the visit from his sister and nephew who drove from hollandaise for the day you just to say goodbye. But they continue to give antibiotics for urine infection and no resistant antibiotics for pseudonomas. I am so confused but I will ask tomorrow morning.

Leila, I didn’t realise either. It's not making sense tonight xx

[Proud Wife]

Predictive text. Not hollandaise! From Holland

[boa]

PW again I send you warm wishes. When my husband wasn't able to drink his mouth was kept moist and clean as Paige describes. Like your husband he looked well enough until about four days before he died. Like you I looked up end of life signs and couldn't really identify with them. I think it can be very different for people. Sending you supportive thoughts at this very difficult time. Catherine

[sandraW]

PW, sending you ((hugs)) and strength.

They told me Trevor was deteriorating and withdrew all his treatment including fluids, on the Thursday, they did put them back up for about 12 hours on the Friday, then when they got the blood results withdrew them again, he died the following Friday at 5pm ish. In Trevor's case, his liver was no longer working properly due to the tumours, plus he had had the operation to insert the drain, so they couldn't give him the antibiotics he needed, they explained everything to me and obviously expected him do die much earlier that he actually did, he was jaundiced, so a different colour anyway.

I had lost my Mum 3 years earlier at 96 due to old age, her death was different, we did get noticeable changes in her breathing, but with Trevor it must have just got slower and slower very gradually without us noticing the change, and then it just stopped, he moved his head very slightly twice to take a breath but then was gone. I do hope if it is your beloved hubby's time to leave us he passes as peacefully. I wish I could be there to support you, but remember we are all with you in spirit, take care love sandrax

[Proud Wife]

Each and every one of you are very special people. The support you are giving me makes such a difference. Although I'm sure it must be painful to recall your loved ones last days, to read your experiences is rather reassuring if that's the right word? I just don't know what to expect and I'm analysing every move and cough. He's not great today, he's breathless and panicky again but when I call the nurse to check on him she says he doesn't need oxygen.

I hope too Sandra. I can't remember if I have said this already but if it's this quick, it will be a miracle for him. Not for us of course but all things considered, the journey up to a week or so ago has been a doddle when it could have been so much worse. If he slips quietly away I will be so happy for him only because he's a very proud man and has always always said he didn't want to lose control which he now has. My greatest fear was to watch him suffer and as much as I want him for as long as possible I pray for peace for him. I hope I've explained this in the right way?