Newly Diagnosed

[Justamo]

Elaine, I'm so sorry. Haven't you had enough to deal with already ?

Peter had a plastic stent to begin with and it did help relieve the jaundice which was a big relief because the itching nearly drove him crazy. However, it only lasted for a month or so and then his bilirubin levels started to creep up and they decided to replace the plastic stent with a metal one. That has been working OK ever since (touch wood).

I do hope that they replace it for him; the jaundice will be making him feel rough and the new stent really might help. As PW says a quiet word with the nurses might be the most diplomatic way to go about it.

Love and prayers (and purrs from Boo)

Mo

[Sandiemac]

I can so empathise with this, Elaine. The same thing happened with Stephen and he is currently in hospital. They have made one attempt to unblock/replace his (metal) stent and will have another go tomorrow. Our first thought was the cancer had spread to the liver but a scan showed that the tumour had wrapped around the stent(s) and it hadn't spread. He too has completely lost his appetite and is having Ensure drinks. It's hard to see the silver lining sometimes.

[stepuha]

Dear Elaine, I am sorry to hear that Pete is going through rough time again. The good news is that this problem should be easy to resolve and Pete will be back to chemo soon. I understand how frustrating it is for him and you.

I am in the daily clinic at the moment having my chemo and the chap next to me doesn't stop swearing in English. I am kind of enjoying hearing English language, even if it is only swearing.

My liver markers are elevated most of the time and they go up and down all the time. Sometimes the doctor is concerned but she never stopped chemo because of them. She did say that bile duct obstruction or even just the fact that I have a stent can have an effect on liver markers. It seems that bile ducts get obstructed often and sometimes even get unblocked by themselves.

With this disease knowing what the problem is and having a possible solution for it is good news.

Keeping my fingers crossed for you and Pete for tomorrow.

Love,

Ira

[Guest]

Hi Elaine,

Yes to everything everyone has said. I think PW has hit the nail on the head. Tell the nurses and let them speak to Pete. If he really doesn't want the procedure (if offered) then they and his doctor will explain the consequences. In the end it's down to Pete. He seems to want to continue chemo treatment so he will have to accept what they need do to keep him functioning well enough to have it. PW is so right, sometimes we have to back off and allow our patients to reach their decisions on their own or via some other route.

Please don't be vexed, it is exhausting for you both, especially you. Backing off is probably the hardest thing we have to learn to do as it is against our instinct.

I wish you both a positive day tomorrow and as always you are in our thoughts and prayers

M xx

[Elaine123]

Thank you to forum friends and nurses for your posts because I was able to go into the clinic and understand more of what was being said and PW and Marmalade you were right Pete at last acknowledged there is a problem after speaking to the Dr. He said that there would be no chemo this week as Petes liver results are over the 50 mark he has asked for an urgent scan at our local hospital to identify what the problem is he also said to Pete it could be one of two things one being his stent is blocked which can be dealt with but the othe other is that the tumour is progressing which cannot be dealt with which once again totally took the feet from us. Again as before Pete seems to blank news like this and be angry that his chemo is cancelled again. His hiccups are back with a vengeance the Chlopromazine isn't working this time and he constantly hiccups quite forcefully at times which catches his breath. The Dr said he has emailed our specialist nurse locally for her to try and arrange the scan for this week. I know this horrid disease takes many dips and then highs but honestly I don't know how Pete and all your loved ones cope or coped with the ever changing symptoms. The pressure on them must be extreme as if they didn't have enough to deal with. Last night we were back to the elephant sitting in the corner of the room and the two of us were obviously trying our best to ignore it we will come to terms with it today and just get on with it as usual. He was so pleased at putting on the four pounds over the past couple of weeks and yesterday two pounds of that we're back off already. So fingers crossed it is his stent that has blocked and he can get over this latest hurdle. Thanks again for your support I cannot imagine how lost people must feel when they come out of the clinic and don't have the back up of this forum to support them. Onwards and upwards today .

Elaine

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[Veebee]

Fingers crossed for the stent being blocked, Elaine. It seems odd to wish for that outcome but it's the lesser of 2 evils. I think it was Mo who said something about having a day off from cancer and I'm feeling like this lately. Reading through posts only serves to reinforce what's ahead. The future is my first thought on waking and the last thing I think of at night. It's fear of the unknown. I'm fed up of talking about it to everyone who asks about Allan.I pick up my grandchildren once a week from school and a lot of the mothers are my daughter's friends and I've known many of them since they were children themselves, so they all ask about him and the caretaker knows Allan and he asks after Allan if I bump into him. I feel mean admitting this but it get's wearing. Anyway, enough of my moaning on your thread, Elaine....keep on keeping on ....love Vee xxxx

[Justamo]

Elaine, you now have countless people praying for a blocked stent. Or visualising it. Or whatever they do.

I can't believe I just wrote that.

Love, Mo

[stepuha]

Dear Elaine, I am thinking of you both and hoping it is just the blocked stent that can be resolved quickly.

Stay strong, love,

Ira

[Elaine123]

Hi everyone Pete had his CT scan on Monday and I just felt so sad for him ...first off he was given the jug of water to drink but as he can only seem to swallow small amounts of fluid at any one time before he starts burping and become unable to keep drinking this was a nightmare for him but he managed it. No sooner was that down but he was asked to change into a gown and was told to come back out and sit in the waiting area .....there was no dressing gowns so he had to sit amongst everyone in this gown that only came to his knees and he is so painfully thin he just looked so ill and nothing like Pete and you could tell how his dignity was affected. My blood was boiling by this time and he was visibly shivering .He was then called in to have a cannula fitted and when he came out he had bits of plaster all over his arms they couldn't get it in a vein and it took multiple tries and finally managed to get it in the back of his hand , he is covered in bruises . Eventually he got called in for his scan. By the time he got dressed again and we left he was shivering and exhausted I just felt the way they treated him was so undignified. At this point we had an appointment at the cancer unit for Wednesday as we were told the consultant would be able to read the scans but by the time we got home there was a message on the phone to say it was cancelled until this coming Wednesday so it has been a long worrying wait which is the usual for PC patients. The strange thing was that on going to bed on Sunday night Petes eyes and skin had a definite yellow tinge when he woke on Monday his eyes were clear and his skin was back to normal. Which we took to maybe mean that he had a blockage and it had cleared. This lasted until Thursday and slowly he has gone back to a yellow tinge again and we just don't know what to think. His appetite has well and truly gone again and I think his weight will have dropped quite a bit .He is also back to sleeping most of the day and is exhausted when moving about. His mood is really low again too which I think is because he is dreading going for his scan results on Wed. I just feel there is no let up or days when he has quality to his life right now. The weather has to be lovely this weekend and the kids and grandkids are coming down so I am hoping maybe that we can sit outside in the garden and he can enjoy the warmth as he is constantly freezing cold. Sorry to be such a doom and gloom poster but it scares me when there is such a change in Pete and also it is a waiting on results week. It has to be a beautiful spring weekend so I hope it gives every one of you a lift and you get out and enjoy it while it lasts. Hugs to all.

Elaine

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[sandraW]

Elaine, Hugs back to you, you sound as though you need them.

Poor Pete its bad enough when you feel unwell, but have to sit like that and be cold as well its so unnecessary, surely someone could have found him a blanket at least.

I hope you get a few hours respite from all your worries when you family come and that they can help cheer Pete up a bit, and also that the nice weather lifts Pete's mood a little too, and you can get him to eat a little.

You must never apologise for as you put it "doom and gloom" that's what we are hear for, so you can get it all off your chest and be sure in the knowledge that we all understand exactly the fear indescions and worry you are going through. And I suppose like the rest of us Mum's you will pin a smile on for the family as you don't want them to worry, but I am sure they will anyway.

Happy Mother's Day and its lovely that you get to spend it with your family, take care love sandrax xx

[Veema]

Oh Elaine...that sounds awful. Maybe next time it might be worth taking his own dressing gown, just in case...it's probably a health and safety thing and all down to germs being passed around on the dressing gowns and them not wanting anything additional to launder.

I hope you can all get some enjoyment out of tomorrow and fingers crossed for the scan results.

Vx

[Veebee]

Hello Elaine... poor Pete having to endure that indignity and if the chairs are anything like the ones where Allan went for his scans, they're not comfortable at all. I'm not surprised you were cross. We know the scan departments are busy but when people who are so very ill have to have a scan some common sense has to be applied and some form of comfort should be provided. Thinking of you both during the long wait for results.

Love Vee xxx

[Proud Wife]

Hi Elaine,

I don't come on here as often as I used to at the moment so was quite shocked to read the latest on Pete. That's really shocking. You would have thought someone should have known better. I don't blame Pete for feeling down, there is not a lot worse than having to wait for scan results. I hope you managed to enjoy Mother's Day in the glorious sunshine we've all seemed to have had and that Pete is feeling a bit brighter by now?

Repeating what everyone else has said, you certainly do not need to apologise. I only hope that by writing it all down, you feel a tiny bit better after off loading.

Thinking of you on Wednesday and sending you the most massive of good luck vibes my lovely xx

[Elaine123]

Hi we went to see the consultant today to hear the results of Petes CT scan. We came out numb , his primary tumour and the liver mets have shrunk but the scan showed 5 more new spots on the other side of his liver which the radiologist described as cysts but the consultant doesn't want to get Petes hopes up as he said he would bet his mortgage on them being cancer. Especially given how poorly Petes physical condition is just now. There is no blockage in his stent so therefore it is not that which is causing him to be jaundiced again. He has discontinued the chemo due to his poor physical health. I asked what happens now and he said nothing further can be done and the cancer will just progress. He has made a referral to the hospice nurses. He also gave him a two week prescription of Amoxycillan 500mg and Metronidazole 400mg three times daily just in case it's infection on the scan but he doesn't think they will have any effect as he is sure it's more cancer spots. Pete was beginning to get really upset and had stopped taking in what was being said. We have to see him again in two weeks . Oh I forgot Pete has put on four pounds even though he has not been eating which we were told was due to fluid in his stomach and ankles and feet. I just don't know what to think or do as I cannot think straight tonight. I am so confused as I don't know if the jaundice are here to stay or if they will ease off in fact tonight I feel the same as when Pete was newly diagnosed. Scared , confused , sad , I know that most of you know these feelings well. Pete has slept most of the night I think maybe that is for the best as he was just so numb.

Elaine

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[Veema]

Elaine...I'm so sorry you've had this news. There are no words to make you feel any better, just know that we are with you all the way.

Much love

Vx

[Justamo]

Elaine, that is awful news. I have a feeling that you half expected it, but we all seem to hang on to a glimmer of hope.

Any chance of getting a referral to the Beatson ? I know they have helped in some cases when all else has failed. Or perhaps Pete just doesn't want to speak to any more medics.

My heart is breaking for you. You have been so brave and sensible throughout Pete's illness, and I wish I could find words of comfort, but as Veema says there just aren't any.

Love and prayers,

Mo

[Elaine123]

Thank you V and Mo for your kind replies. Mo it is the Beatson cancer unit that Pete attends and they are fantastic , the care is excellent. Pete was restless all night and was up and down so I will let him sleep on today. I am still unable to take it all in today. Hugs

Elaine

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[stepuha]

Dear Elaine,

I can't imagine how you and Pete are feeling at the moment. I am so sorry to hear this news but please don't give up. Get a second opinion. Please see the article below about the Professor in xx in charge of the new Precision Panc project:

http://www.cancerresearchuk.org/about-us/cancer-news/press-release/2017-03-24-new-era-in-precision-medicine-for-pancreatic-cancer

He may know of a clinical trial that can be suitable in the circumstances.

It doesn't sound like they found exactly what is causing Pete's jaundice, perhaps another doctor could have some ideas.

I understand that Pete may not be willing to do anything right now but there is no harm in getting in touch and just enquiring.

Big hug,

Stepuha

[Veebee]

Hello Elaine....I've just read your latest post and am so sorry that you and Pete didn't get the results you so desperately needed. I don't know what else to say to you except that you know you have to just get on with it. I hope that Pete can manage to stay a bit positive.

Love Vee xxx

[Guest]

Dear Elaine,

I am so very sorry to read your latest post. Yes, we know how it feels to be told this and how it is like reliving the diagnosis. I am also sorry that Pete is not ready to accept his position yet. I think he will, and it will be easier when he does.

Louis was accepting but did not want to talk about it all the time so we agreed a day to deal with all the important stuff including the TEP (treatment escalation plan) form which is a real must. It's the form which sets out how Pete wants to be treated and where. Either his GP or the hospice will speak to him about this. You will find the hospice and staff a breath of fresh air as they really are the business and they will help both you and Pete with your feelings, fears and all the practical stuff but in a much less clinical way. I think you will feel much more supported, I certainly hope so. Go along and have a good chat with Pete's GP too, you can go on your own if he doesn't want to go and talk about what support you'd like. They can't discuss his medical information unless Pete is happy for them to do so but they can discuss what they have to offer and what they will do.

I am really sorry Elaine but these days while he is still mobile and able to enjoy life are really precious so try not to over focus on what will be, but on what you have right now.

Much love to you both, you are in all our hearts and prayers

M xx

[Proud Wife]

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]

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]

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]

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]

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

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