Newly Diagnosed

[Justamo]

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

Much love

Mo

[Dandygal76]

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

[Guest]

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]

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]

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]

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]

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

[Guest]

Looking in to wish you both a calm and peaceful night

M x

[Veebee]

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]

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

[Elaine123]

Hi everyone and thank you for all the kind messages of support. I have been in touch with our brilliant nurses all week as Pete was admitted to the local hospital on Monday afternoon by the GP. It has been one helluva rollercoaster week the bumpiest so far. We were told so many conflicting reports that one day we were up then crash landed the next day. I was kind of prepared during it all as our nurses made sure that I had to be aware that the conflicting news should be viewed very hesitantly and it turned out everything they told me was true. It is not cysts or abscesses that showed on Petes CT scan but further spread. He also looks as though he is about to give birth. On sitting up to eat or drink this is making him so breathless and uncomfortable. I should say attempting to eat or drink as he is only managing a few sips at a time and nothing to eat as he is now totally off food for four days. He is also a sickly shade of yellow. The past two nights he has also started to become a bit confused. I felt as though I was just getting fed what the staff wanted to tell me and not the full truth ....so I spoke to a senior nurse last night and told her I would like Pete at home as his IV drip has finished and he is only getting oral medication and I would like the hospice nurses to be involved in his care. The Dr's spoke to our oncologist today who confirmed that Pete should be discharged tomorrow hopefully. So we are praying this goes ahead. He is just lying in bed and staring all about him there is no TVs so no background noise or any chat from the other patients and I feel he just looks so lost and distressed. I don't know if they intend to drain the fluid away or what so all will be revealed at the Dr's round tomorrow. He is not really mobile now and struggles to walk any distance as his feet are so badly swollen. As you go through this journey you worry and stress about how your loved ones are but then at this stage you cannot even bring to mind how they were in the early days. Tonight he had visitors that said on seeing him....oh you are looking really good .....both Pete and I knew they were lying but obviously they didn't know what else to say. This sounds terrible but he couldn't wait til they left. The nurses have gave him a beaker as his hands now shake and also he has difficulty sitting up far enough to tilt a normal cup to his mouth as it goes all over him and he is aghast at having to drink from it. Fingers crossed we get him home as usually at the weekend there is no Dr's rounds or anything so it would then be Monday before any desk ions will be made and he will just lie there all day with no distractions and no one to talk to until visiting times. I feel as though I am constantly moaning and spouting doom and gloom right now....as they say in panto " oh yes you are " . I hop everyone is looking forward to the weekend and that it is a good one. Take care and stay strong.

Elaine

X

[Justamo]

I hope that he comes home to you with hospice support Elaine. If the nurses could at least make him physically more comfortable he will be better off at home provided, as I say, that there is professional help that you can call on.

I'll be thinking of you all weekend.

Much love and prayers

Mo x

[Veema]

Elaine, I really feel for you. This is exactly the same situation we were in. If I were you, I'd demand the fluid be drained before you bring him home as it will only continue to grow and make him more uncomfortable, unless of course you've been give a short time frame and don't want to put him through that close to the end, which is totally understandable. Nige was very confused too and the GP said that was because his sodium was low, so maybe worth asking about that too.

Keeping you in my thoughts, much love.

Vx

[Veebee]

Elaine...I've read your latest post with a deep sadness for you both. I can understand your need, and Pete's, to be at home and truly hope this wish comes to fruition. There's no more to be said , apart from, I'm thinking of you both and willing you both on.

Stay strong Elaine.....love and hugs Vee xxxx

[sandraW]

Elaine, so sorry to hear Pete is so poorly.

We made the decision on the Monday before Trevor died on the Friday, that we didn't want any more visitors for him. I just rang family and friends, and explained the situation, it was just me the boys and our DIL, our other DIL lives too far away and had to stay home due to their daughter being in school. Perhaps its something to consider if it is stressing Pete out, I know it

was the right decision for Trevor, as he didn't want people to see him as he was.

We are all thinking of you both and I send more love and strength to you both, take care love sandrax xx

[Quickasyoucan]

Hi Elaine I'm sorry you have not had a similar experience to ours at the hospice. Dad did get huge relief from having the ascites drained and also being put on a short course of steroids. Obviously each place is different and our hospice has separate rooms so I was comfortable staying there with dad all day. Sending you all the best as we are in a similar position to you with liver mets etc. x

[Dandygal76]

Hi Elaine,

I hope you have managed to get Pete home. When dad was in the hospital we bought some cordless noise cancelling earphones and he liked to lay there and listen to the rugby and football etc via his phone. He also used the ear phones at night to block out the noise of the hospital. I hope that the ascites has been dealt with. I have not any experience of this myself but I would also be making a fuss over this if I was in your shoes. You will find strength you never knew you had. Much love to you all. xx

[Guest]

Dear Elaine,

You are both having such a rotten time but don't you worry about moaning it doesn't matter one bit, you are just telling your story as it seems to you. I do agree with Veema, that you should ask that all possible attention should be given to Pete's comfort including draining any fluid, which should be painless. The confusion could be any number of things but it is clear his liver is compromised so cannot clear toxins from his blood. The disease is progressing and his organs struggling which is why his comfort is now paramount. I am so glad the lovely nurses on here are supporting you and helping you follow what is going on. It does help to know what is happening.

I hope you both have a peaceful night and would ignore visiting times and protocols and spend whatever time with Pete that you feel comfortable with. This is the time where quality counts for both of you, calm and reassurance is all you can offer now and if you feel he would be happier at home, and you can both cope with that then do what you can to make it happen.

I send you both love and prayers and the assurance that your forum family will be walking with you on this journey. God bless xxxx

[Veema]

Hi Elaine...just sending lots of prayers and positive vibes. Don't feel like you need to respond, just know I'm thinking of you both.

Vx

[Justamo]

Me too, Elaine.

Thinking of you both.

Love and prayers

Mo

[Dandygal76]

Me as well lovely lady. There is nothing we can say to make this easier for you all but we are here when you need us. X

[Guest]

Hi Elaine,

Just dropping by so that you know we are thinking of you both. Replies are not necessary.

I pray you have a calm and peaceful night

M xx

[Proud Wife]

Hello Elaine

I've had trouble logging on for the past week so have not been able to post earlier.

As Marmalade has said, no reply is needed but you and Pete are constantly in my thoughts.

Stay strong xx

[Elaine123]

Hi everyone I am so sad to have to tell you Pete slipped away at noon on Wednesday. He got his wish and we were all with him so it was what he wanted.

He didn't get home from hospital on the Friday as planned. He had a C.T scan and we were told quite bluntly that something is going on in Petes stomach and he may take a catastrophic heart attack ( their words ) and would be better in hospital where they could cope with that. Pete was so agitated and desperate to get home for however long he had left. The kids ( 43 and 46 yrs old ) and I decided he had to get home. So grudgingly they arranged an ambulance and Pete came home.

That started a catalogue of errors which took two long days to bring under control. On leaving the nurse gave us a Kardex of the drugs that may be essential at the end days and gave us the numbers of the nurses we may have to call so we in our ignorance presumed that when the nurses came they would look at the Kardex and know what Pete had to be given. On the Sunday Pete was really agitated and we decided to call the numbers we were given. Explained this to the nurse who asked if the " just in case box was at home " and we didn't have a clue what she meant. Upshot was they couldn't come out until the box was in the house as they needed what was in it. Called NHS 24 and they sent out a duty doctor who couldn't do anything for Pete except give him two diazepam tablets for the agitation and advise us to contact our GP on the Monday morning. We spent the whole night moving Pete from the sofa to the chairs to our bed as he wanted to move every ten mins or so. At 8.30am we called the surgery who said the box should have been given to us by the nurse on discharge from the hospital.my son CRAIG had then to go after ten am to collect the prescriptions for the items that had to go in the box and also the plastic case. He then had to get the pres filled and put in the box by the chemist. It was stress we didn't need.

On Monday everyone that was close to Pete came for a short time to see him and they knew it was goodbye. The grandkids also got to talk to him and they talked and laughed at what he meant to them all through their lives. It was heartbreaking but wonderful at the same time and there was tears and laughter all day and Pete loved it as he got the chance to say goodbye and to know how much he was loved which many people do not get.

From Tues it was just Craig and Karen and Pete and I and we had a day and a half together ....Pete was lucid up until Wed morning and in no pain ...a Marie Curie nurse spent overnight with us and he was an angel. At noon Pete just slipped away with us all around him.

To say it was perfect is not what I should be saying about my husband of 48 years dying but it was and it was what we all wanted for him.

Like many of you here I still cannot believe he is gone and I now realise the pressure we were under over the last six months. It was as if

On the day Pete was diagnosed we left one life behind us and lived this alternate life for six months. For now I am just so relieved that Pete is not in the grip of this horrid disease any more.

We have the funeral this coming Thursday and I know that once that is over and real life takes over again that It will feel that a sledgehammer has smashed my life to pieces. I am so grateful to all forum friends for your constant support and your sharing your own personal battles with me and also to our nurses .....who were a lifeline to me and never failed to give me the support and the truth behind whatever I asked them. Thank you one and all from Pete and I.

Elaine

Xx

[Dandygal76]

My lovely friend, it was and is just such a bitter sweet and most intimate of times. You will bounce between surreal, fondness, anger and also that weird one... relief they are no longer suffering. There is no right or wrong feeling or process. Whatever you feel is right for you and Pete won't mind one little bit. Everyone will probably tell you to be strong and do this or that like they did my mum. My mum tried to suppress her grief so she could be there for us. I am not saying you will do the same but if you feel like that any time then think again and cry with your children. Love to you all. X