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Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Newly Diagnosed

Postby Proud Wife » Thu Mar 30, 2017 7:34 pm

Hello Elaine

This is my second attempt at posting, the new forum and I don't see eye to eye and like Veema, I don't do change very well.

I am so very sorry to hear the latest on Pete. You've been given some sound advice by other members of our family so I just wanted to say, you are in my thoughts and prayers.

How is Pete today, physically and emotionally?

Lots of love
PW xx

Quickasyoucan
Posts: 112
Joined: Tue Jan 17, 2017 10:06 pm

Re: Newly Diagnosed

Postby Quickasyoucan » Thu Mar 30, 2017 9:19 pm

Hi Elaine thank you for taking the time to post on our thread even tho you are dealing with your own bad news. We know how you feel as dad has never has good news it has been hit after hit. What we have learned is to take each day as it comes and enjoy your diamond days. Our hospice have been unbelievable and dad has been having loads of happy times joking and laughing with the nurses.we should all learn to take something positive out of each day as none of us know what life will bring. Sending all good thoughts to you and Pete xx

sandraW
Posts: 1031
Joined: Thu Oct 31, 2013 5:38 pm

Re: Newly Diagnosed

Postby sandraW » Sat Apr 01, 2017 10:02 am

Elaine, just reiterating what all your friends on here are saying, when you get that news its just awful, its there in the back of your mind but you never want to hear it, we all hope and hope for the goods news,
Marmalade has as usual given you the best advice with who to contact etc. as for feeling scared confused and sad why wouldn't you.
You wonder if you will have the strength to cope, but you will, we get the strength from somewhere, and when the times comes for you to say goodbye you will let him go, because that's the best thing for your beloved Pete.
But we will still keep our fingers crossed for a miracle, that it is just infection and that Pete will start to feel better, sending you love strength and hugs sandrax xx

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Newly Diagnosed

Postby Dandygal76 » Sun Apr 02, 2017 7:17 am

Hey Elaine,

I am so sorry to hear Peter's scan was such bad news. I really hope that coming off the chemo may give Peter some strength to get some quality spring time. My dad also did not have a blockage and got jaundice. Have they checked him for infection? I think the jaundice can make them feel very poorly and it is very frustrating when you find it is not something as easy to fix as a blockage. I understand that Milk Thistle is supposed to be a good healer for the liver. It won't make it all okay but it may help the liver detox from the chemo effects.

Of course Peter will be upset. Have you thought about seeing if there are any trials out there at a stage 1? It may not be for you but I found my dad needed to cling to the hope the whole way. They are all different though in what they need and we have all learned that along the way.

It is a confusing time and it needs lots of cuddles. I can get it is as bad as newly diagnosed because it makes you feel so powerless. But, you are not powerless and you have the strength to do this and to ease this next part of the progression. Just make today as comforting and calm as you can and that is all you can do. Make every minute count.

I am sending you so many cyber hugs.

Much love to you both.

xxx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Mon Apr 03, 2017 9:15 am

Thanks to everyone for their lovely replies to my recent post. Pete has had a really bad weekend . He continues to be a deep shade of yellow and his feet have a mottled appearance and swollen also his stomach is becoming swollen and distended. He cannot face food of any kind and struggles to get an enshake over. He is also so defeated looking which is scary. He also doesn't want any visitors except close family as he doesn't seem to want to be involved in long conversations and if he is then he loses interest in them very quickly. I just feel so useless as there doesn't seem to be any way I can help him in fact yesterday I took advice that I read some time ago in a post by Marmalade and I didn't push him to eat or talk or sit up for a while and it was the most relaxing day we have had to date. His walking is becoming extremely poor and he is having great difficulty going from lying down to sitting up and getting to a standing position. I still cannot believe that his pancreas tumour and liver mets have shrunk and yet there is this massive deterioration in just over ten days. I need to try and get the hospice nurse today , oncologist said he was putting a referral but I feel I cannot wait until they contact us. Since diagnosis Petes medication has grown weekly and no matter how many are prescribed no one ever discontinues any of the ones that he may not need now and I feel he is taking this cocktail of drugs that could be detrimental to each other. This may just be me clutching at straws but I would feel better if someone could review them. Also have a look at the swelling in his stomach. I am just scared of recent developments and as Pete still continues to not discuss anything it's difficult to judge if I am worrying about minor things or if there is anything different I should be doing. Thank you all so much for being a wonderful support. The nurses have also been a much needed lifeline for me and are the only people who tell me like it is and explain every question I have in easy to understand language. I have been lax at replying to others posts but I hope everyone are doing good at the moment.
Elaine
X

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: Newly Diagnosed

Postby Justamo » Mon Apr 03, 2017 9:22 am

You're not alone Elaine, we're all hanging in there with you.
Much love
Mo

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Newly Diagnosed

Postby Dandygal76 » Mon Apr 03, 2017 11:15 am

Elaine I am on my phone but will message you later. Please don't worry about not posting for everyone else. We have all had times there is no mental capacity to do so, and with everything you are dealing with it is one of those times. I would also push for that help.. Can you get the gp involved to make them move quicker. You need to advocate firmly your ever changing needs now. I do recall I think that m also found getting proper hospital bed a relief and comfort. I hope I am not crossing stories. Also, Pete can choose to come off some meds if he feels he does not need them. We found it a trial and error thing and dad would change doses and drugs daily. I will message you later my lovely. Stay strong and we are here every step of the way. X

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Mon Apr 03, 2017 4:55 pm

Dearest Elaine,

Your first port of call should be your GP as he or she is ultimately responsible for Pete's care. They often outsource palliative care to a hospice or community nurses. Ring the surgery and get the GP to come out and review Pete's medication and make arrangements for him to have his ascites dealt with and some help with his mood. You can also ask for the doctor to speak to you on the phone. Don't bother a jot about bothering the doctor, this is when they come into their own and is part of their role.

The doctor or hospice will speak to him about how he wants to be cared for and where. Home isn't always the right place. Everyone is different and there are merits in hospice or nursing home care, especially if a period of getting the drugs right is required. If he does want to be at home send me a pm and I will give you some tips. The doctor may also want you to have a "just in case" pack of drugs to go in a syringe driver. This disease means that drugs taken orally stop being absorbed eventually so giving them via a driver is much more effective and gives them a measured dose so they don't "wear off" like oral drugs.

The roller coaster goes up and down, sometimes the change is very fast and at others it seems to slow or stop, getting rid of some fluid will no doubt make him feel better. It can be very quick so don't delay on doing and saying things you think are important. You don't always need words, sometimes just a bit of hand holding or a hug helps you both.

I am so pleased you had a better day when you pulled back a little from trying to fix everything for Pete and doing what has become your life in the last few months, I also know how hard it is to stand back.

I completely understand why Pete doesn't want people around. Louis didn't want people to witness him going downhill and it must be incredibly difficult for him to deal with his discomfort and pain and his terrible thoughts without having to be sociable to visitors. That doesn't mean you can't have visitors or go out if someone can be with Pete, or chat on the phone if you feel like it. You can't just sit there watching him all the time, it will drive you both crazy.

We none of us know how long is left so you have to try and make each day you have the best it can be. Rest when he rests, get hold of a listening monitor with a good range so you can go out in the garden or rest in another room but still hear him. You may not need these things today but get them in just in case.

I would not wish this on you Elaine but Louis and I had some of our most special times in those last weeks and days, among all the heartbreak there was genuine love, care and peace that I will have with me always.

We will all be walking beside you Elaine, you will not be alone. You are in our prayers and our hearts.

Marmalade xxxx

stepuha
Posts: 93
Joined: Thu Nov 10, 2016 2:31 pm

Re: Newly Diagnosed

Postby stepuha » Mon Apr 03, 2017 5:40 pm

Dear Elaine,
I am sorry to hear that you are going through difficult time. It sounds like you desperately need some help and I hope your GP will be able to provide it soon. I am thinking of you and Pete and sending you love.
Big hug
Stepuha

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Newly Diagnosed

Postby Proud Wife » Mon Apr 03, 2017 6:43 pm

Dear Elaine

I am so very sorry to read your latest update. Pete's current condition seems to be a carbon copy of my hubby's towards the end and I have to agree with Marmalade that it can go quickly. I hate even having to type those words but the beauty about this forum is that the comments made are always made with the carer's/patient's very best interests and are not meant to cause further upset or worry.

The only thing you need to be doing is getting support from the medical professionals - they need to take the burden off your shoulders by doing everything possible to make Pete more comfortable. Also, try to accept that if Pete is struggling to take the ensure, it's not his fault, it's the disease. Try giving him very small amounts often, the same with liquids, even if it's a sip at a time. Once the disease progresses towards end stage, the body can't even tolerate fluids. I remember begging the nurses to put him back on fluids but they gently told me that it would cause him more pain than good.

I totally get why you are struggling to understand how things can go downhill so quickly. There is clearly something going on. Pete needs to be checked out for ascites but in my hubby's case, it was the tumour growing rapidly that was causing his distended tummy. When Pete is lying down, can you see an irregular shape in his abdomen or is it rounded and hard like a pregnant tummy? I could see a disgusting irregular mass and you just knew it was the tumour. So disgusting and upsetting. My hubby's muscles seemed to go over night and within a few days he couldn't even shift himself in bed to change position. It's heartbreaking to watch and I feel your pain.

If he's struggling to move now, please look out for pressure sores. I know it's not easy but please try not to neglect your own health. Other than that, there's not really a lot more advice I can offer you.

You know that we are all with you every step of the way. You have my personal details so please do not hesitate to message me night or day if you just want to talk to someone who understands.

Stay strong my lovely and forget other threads. Pete is your only concern.

Sending hugs and kisses your way. xxx

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Newly Diagnosed

Postby Veema » Mon Apr 03, 2017 8:05 pm

It definitely sounds like ascites to me Elaine...he needs checking out...an ultrasound will confirm it if it is that. It can be drained. It could well be this fluid on the abdomen that will be pushing up into his stomach making eating impossible and he'll be generally uncomfortable and poorly feeling. You never know...if it's drained, he may well perk up.

I echo Proud Wife...this also sounds very much like Nige as he approached the end. Keep an eye on his temperature as the ascites can cause infection. Have you got the palliative care team on board? We had a hospice nurse who came out and basically told me Nige had about a month...he died 4 days later.

You need to get someone out to check him over...and don't forget, none of us are medics...he may well just be having a rough period.

Much love...don't forget, I'm about on facebook and messenger much of the time.

Vx

Quickasyoucan
Posts: 112
Joined: Tue Jan 17, 2017 10:06 pm

Re: Newly Diagnosed

Postby Quickasyoucan » Mon Apr 03, 2017 9:25 pm

Hi Elaine we were struggling at home until dad was admitted to the hospice for symptom management. He wasn't eating and even said I will be dead in 2 days. That was 2 weeks ago. He had his ascites drained and felt so much better. We have had a whole week where dad is eating literally everything. Steroids also help short term with appetite.Today even with a cold he has had 3 meals. Dad was signed off chemo with liver mets in January. It is now April and he has no pain thanks to a morphine patch. Take all the help you can get. If you have a hospice ask for admission for symptom management if possible. This literally saved dad and he can always be discharged home. Also ask about fast track continuing care which will pay for up to 4 care visits a day or nursing home admission if that is what Pete wants. Sending you all good wishes xx

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Tue Apr 04, 2017 10:01 pm

Looking in to wish you both a calm and peaceful night

M x

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Newly Diagnosed

Postby Veebee » Wed Apr 05, 2017 8:53 am

Dear Elaine....have just read your latest post with a feeling of sadness for you both and in a selfish way, for Allan and myself too. It's that fear again of eventuality. I do feel for you and will reiterate what others have said. Your GP must be involved , they're the ones who can review any medication that Pete may not need at this time. Allan takes meds for a heart condition and our GP stopped 2 of his tablets and lowered the dosage of another one. Please take heart that many people are willing you on at this difficult time and hoping that Pete can be made more comfortable re the swelling. Much love Vee xxxx

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Newly Diagnosed

Postby Dandygal76 » Thu Apr 06, 2017 9:59 am

Stay strong Elaine. I hope that things are okay and the hospital have made Pete comfortable. We are here when you need us and we are thinking of you and hoping you will overcome this latest hurdle. x