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

Re: Newly Diagnosed

Postby Veebee » Thu Mar 16, 2017 10:30 am

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

Re: Newly Diagnosed

Postby Justamo » Thu Mar 16, 2017 9:23 pm

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

Re: Newly Diagnosed

Postby stepuha » Thu Mar 16, 2017 9:29 pm

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

Re: Newly Diagnosed

Postby Elaine123 » Sat Mar 25, 2017 9:28 am

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
X

sandraW
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: Newly Diagnosed

Postby sandraW » Sat Mar 25, 2017 10:18 am

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
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Newly Diagnosed

Postby Veema » Sat Mar 25, 2017 12:12 pm

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

Re: Newly Diagnosed

Postby Veebee » Sat Mar 25, 2017 5:28 pm

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
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: Newly Diagnosed

Postby Proud Wife » Sun Mar 26, 2017 7:34 pm

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

Re: Newly Diagnosed

Postby Elaine123 » Wed Mar 29, 2017 10:12 pm

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
X

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Newly Diagnosed

Postby Veema » Wed Mar 29, 2017 10:34 pm

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

Re: Newly Diagnosed

Postby Justamo » Wed Mar 29, 2017 11:21 pm

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

Re: Newly Diagnosed

Postby Elaine123 » Thu Mar 30, 2017 9:58 am

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
X

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

Re: Newly Diagnosed

Postby stepuha » Thu Mar 30, 2017 10:45 am

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 Glasgow in charge of the new Precision Panc project:
http://www.cancerresearchuk.org/about-u ... tic-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
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Newly Diagnosed

Postby Veebee » Thu Mar 30, 2017 11:52 am

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

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Thu Mar 30, 2017 6:51 pm

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