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Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Totally in awe of my wonderful Husband!

Postby Dandygal76 » Sun Jun 05, 2016 8:15 pm

My lovely friend. You need to do what feels right inside for you. If this goes bad you have your son to think about as well. There is no right answer... really no right answer. More than that... there is NO answer. Personally I would say go home and sleep. Your husband is fantastic, a fighter and a father. I will hold onto the last point... go home, sleep, be a mother because that is what he wants. And if you can't, don't beat yourself up. You are also a wife. A proudwife. x

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Totally in awe of my wonderful Husband!

Postby Linda G » Sun Jun 05, 2016 8:24 pm

Ah PW, my heart aches for you both. Crying as I write this because I know how you feel and I know how very difficult this is. I agree with Leila, its a very personal decision. Stew was in hospital for two weeks and I was not allowed to stay overnight - I don't think they realised how ill he was. He went to the hospice from hospital and I only went home one night (he was there for 20 days). After that night I could not leave. Like your hubby he was very demanding at first, but I think that was because of the situation. I cannot imagine what must go on in the mind of someone at this stage. Once they started to increase his pain relief he became more settled. Eventually he stayed asleep for 12 days before he crossed the divide. I stayed all the time. Only popping out for fresh air when his son and/or daughter was there. I slept?? on a chair or fold down bed every night. It was where I wanted to be. Wishing you love and strength at this very difficult, heartbreaking time.
Linda G
XXXX

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sun Jun 05, 2016 9:20 pm

You guys are all so amazing! Thank you very much for your support. I went home for a few hours and slept. I have packed my bag and I am here to stay! It was just yesterday that he was so demanding all night I had to question whether I'd be more use to him well rested than exhausted and broken. I just have to learn to leave it to the nurses to get him comfortable in the night because I can't function without sleep.

At the moment he's asleep. He knows that I am here and is just exhausted himself. They have put him on fluids and packing him full of antibiotics. My son and I were laughing today as he kept asking for silly things bless him probably due to the medication but for now he is making more sense.

I love this man to the end of the world and back again and I'm not ready to say goodbye yet. He better make sure he's not either!!

Linda I know only too well that you know exactly how I'm feeling. You crossed the divide on this forum not so long ago and all that I am going through right now must also bring back such painful memories. All I can say right now with very limited support due to overseas family and friends living far away is that I would be lost without this forum. Xxx

Paige
Posts: 34
Joined: Fri Mar 04, 2016 5:21 pm

Re: Totally in awe of my wonderful Husband!

Postby Paige » Sun Jun 05, 2016 9:29 pm

I am thinking of you at this unbearably difficult time. I can only reiterate what others have said, it is such a personal decision and I am sure what ever you decide will be the right one for you and your husband. With my Dad when he was in hospital we all thought he would be coming home for pretty much the whole 5 weeks he was there, we also weren't allowed to stay past 8pm in the evening and so would spend all day with him And then go home. However About a day after we found out he couldn't ever come home he was moved to the hospice and he was there for almost 2 weeks and at this point Someone stayed with him. Both my sister and I were so close to my Dad that it allowed us to take it in turns with my Mum to stay over night with him, we would all be there all day but then just one of us would stay allowing the other 2 to attempt to get a bit of shut eye. I would have stayed every night, I hated leaving my Dad but equally it is an exhausting situation emotionally and physically and again I had the comfort of knowing either my Mum or my sister was there over night with my Dad when I wasn't. The bit of rest I got when I went home really helped as I struggled to sleep at the hospice. Although the day we got told my Dad could go anytime none of us left until he was gone. My Dad suffered with a lot of agitation as time went on and they were able to give my Dad injections which really helped him to relax, we did have to mention his agitation and ask if there was anything they could do to be offered these.

Thinking of you PW
Xx

Paige
Posts: 34
Joined: Fri Mar 04, 2016 5:21 pm

Re: Totally in awe of my wonderful Husband!

Postby Paige » Sun Jun 05, 2016 9:38 pm

Hi PW, You must have posted as I was typing, so glad to hear you have been able to get some rest. I think we all function better when rested, it is a hard enough situation to be in even in the most rested state.
Xx

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Sun Jun 05, 2016 9:55 pm

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
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Totally in awe of my wonderful Husband!

Postby shelda » Mon Jun 06, 2016 12:44 am

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
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: Totally in awe of my wonderful Husband!

Postby Ant11 » Mon Jun 06, 2016 1:16 pm

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
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Totally in awe of my wonderful Husband!

Postby Linda G » Mon Jun 06, 2016 7:18 pm

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
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Mon Jun 06, 2016 9:27 pm

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
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Mon Jun 06, 2016 9:32 pm

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.

Marmalade

Re: Totally in awe of my wonderful Husband!

Postby Marmalade » Tue Jun 07, 2016 7:58 am

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

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Totally in awe of my wonderful Husband!

Postby Wife&Mum » Tue Jun 07, 2016 9:24 am

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
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Totally in awe of my wonderful Husband!

Postby Linda G » Tue Jun 07, 2016 7:35 pm

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
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Tue Jun 07, 2016 10:32 pm

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.