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Re: Stephen's Story

Posted: Wed Aug 23, 2017 2:11 pm
by PCUK Nurse Dianne
Hi Sandie,

Sorry to hear that Stephen is not so well today, and I have sent you a brief email with some thoughts. I also forgot to add some information that may be helpful for others in a similar situation with issues of a dry mouth. There are some really basic ideas that may help stimulate saliva, this includes some of the refreshing citrus juices ie lemon, pineapple and also ginger. As these are often quite 'tart' in flavour they may help to stimulate the salivary glands and will produce some saliva so the mouth is not so dry.

Another suggestion is to try some chewing gum if Stephen would tolerate this. It does not need to be chewed for long periods, having this before meals may produce enough saliva that his mouth is not so dry before eating and allow the meals to be tolerated better.
Boiled sweets (if you are able to obtain them) are also quite good at making saliva and offer a change in taste too.

I hope this is helpful Sandie along with some other thoughts by email, and please be in touch as you may need.

Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK
Support line: 0808 801 0707

Re: Stephen's Story

Posted: Wed Aug 23, 2017 9:10 pm
by Justamo
Hello Sandie,

Throughout all of this illness, Peter's worst nightmare was the itching from jaundice. He almost went crazy, and like you I tried every cream under the sun.

However, I did find one thing that helped. It is called MAGICOOL FOR ITCHY SKIN, and I bought the first one from Boots. After that I got it on Amazon, because I was buying three at a time. It really helped, much to the GP's amazement. I believe that some area Health Boards will allow it on prescription, but even if you have to pay for it it might be worth trying one can to see if it will provide relief.

The roller-coaster nature of this disease might mean that you can go to Bournemouth for a short break - don't cancel it just yet.

So sorry for Stephen - and for you. Take care.
Love, Mo

Re: Stephen's Story

Posted: Thu Aug 24, 2017 9:20 am
by sandraW
Hi Sandie,
Sorry to hear Stephen is struggling at the moment. I had eczema quite badly as a child, it runs in our family too, I was given cold tar paste, I don't think its available any more but I still remember how soothing it was when my Mum applied it for me. Have you tried Sudocrem, I find it helps with my varicose eczema on my legs, it can be very drying for the skin though but anything is worth a try.
I hope you do get away, if Stephen is well enough of course, a change of scene is always good,
and it will be a much needed break, but I agree its no good if he is not up to it, the hotel sounds
very nice with its policy, it good to hear some places can be understanding.
I hope he stays as well as he can and I hope your eczema clears up too take care love sandrax xx

Re: Stephen's Story

Posted: Sun Aug 27, 2017 2:51 am
by Marmalade
Hi Sandie,

How well we know the struggle to hold back from cajoling them to eat but there comes a time when it causes more pain and distress than it cures, you get fed up nagging and they get fed up trying to do what they can't do. I'm sorry things are catching up with you at the moment and that Stephen has the terrible itching, a friend has had some relief with old fashioned Coal Tar soap which is on sale in our local independent pharmacy but results with any of the lotions and potions seem to be very individual.

It is inevitable that you will have ups and downs in your mood and ability to cope. Having the sword over your heads from the day of diagnosis is a form of torture and you are bound to have days of fear and exhaustion. Try not to be hard on yourselves attempting to keep up 'normal life' This is a very special time and all that matters is that you have the best most comfortable time that you can. Fill the freezer with ready meals for days when you don't feel like cooking and let the non essential housework go, it really doesn't matter. I would not attempt the trip if it is going to exhaust you or Stephen, sometimes having familiar things around and people on hand to support you is reassuring but you will be in the best position to judge.

Much love Sandie, I hope you have a comfortable and enjoyable weekend

Marmalade xx

Re: Stephen's Story

Posted: Sun Aug 27, 2017 1:08 pm
by Sandiemac
Thank you for your responses. We will be going to Bournemouth, barring something catastrophic in the next week. When I mentioned cancelling Steve said we were going and that's that, because I needed the break probably more than he does.

Use of painkillers has diminished in the last few days. The 2-hourly schedule has gone to pot
but I make sure he at least has something before bed at night. However, he usually needs a hot water bottle at least once during the night, and some cream on his back. We have some Magicool (I bought it when the PC nurse recommended it to me in a phonecall, probably after hearing about it from you Mo), but the effect doesn't seem to last long. I am currently using a steroid cream on the worst eczema patches and he doesn't now seem to scratch much during the day. Thankful for small mercies! I'll try Coal Tar, Marmalade.

Again, the cricket is proving a godsend (as it did at this time last year) in keeping him occupied and our son is here this weekend (also a cricket fan) but apart from that each day is much the same. He is rather tottery on his feet around the house so going out for a walk is definitely not on the cards, even with his rollator, as the wheels go everywhere on anything but very flat ground. He's never been one for "aimless walking" anyway!

This has now been going on for so long (since Feb. 2016) that it's easy to forget what life was like before. This is now the normal. But hey, it could be a damn sight worse.

When my sons ask "and how are YOU?" (I'm sure you all get that) I say thank goodness for books, chocolate and wine.

Re: Stephen's Story

Posted: Sun Aug 27, 2017 8:09 pm
by patrigib
I know how difficult it is. Don't know what to say. So difficult for them, but for caregivers too ( husband diagnosed Sept. 2014!!!) What's "normal" life? Wondering too........ Hugs

Re: Stephen's Story

Posted: Mon Aug 28, 2017 7:00 am
by Didge
Patrigib, how was the scan? Your husband has done amazingly well but it is certainly tough on the carers x

Re: Stephen's Story

Posted: Mon Aug 28, 2017 12:57 pm
by patrigib
Well, his scan and MRI in July showed " paradoxal" results, some mets stable, even decreased, one increased, tumour on pancreas stable but he is increasingly tired. Some days are ok, some days not (either high fever, or extreme pain, he fell also several times). Still manages to have a card play with his friends, on to mow the lawn on his mower. But I'd say quality of life is not so good, as he needs more and more rest. His CA 19.9 is also on the rise, about 1,300. It was 88 when he was diagnosed. His last blood work is also quite good. Bit of trouble on the liver and low haemoglobin (around 10) but his doctor is pleased.

I'm a teacher, and supposed to go back to work on the 1st September but I feel so exhausted and worried. Will discuss to have a leave, don't feel strong enough to cope anymore.
If it's hard for the caregivers, I can't imagine how hard it is for them..............

Re: Stephen's Story

Posted: Fri Sep 01, 2017 10:55 am
by Dandygal76
Hey Sandie / Patrigib - these will be exhausting times. I also forgot what normal was and watching dad wobbling in his walk was the most difficult thing when he was always such a fit and athletic man. I don't think there is anything wrong with calling time out from work, housework, cooking and I think we can put too stress on ourselves trying to maintain normal. In the end with our caring my kids actually got sick of take out and having a Macs especially. Yes it is possible to prevent a teenager wanting take out! But, once you let a lot of it go it really does take some pressure off. I look back now and although things were not 'normal' we also had some very special and happy times regardless. x

Re: Stephen's Story

Posted: Fri Sep 01, 2017 8:22 pm
by Sandiemac
"Barring something catastrophic" I said, well how about a broken arm. No, we are not off to Bournemouth in the morning.

Stephen fell at home yesterday evening and broke his humerus. Good news is it doesn't need plastering, it heals on its own like a collar bone. Bad news is it was his left shoulder and of course he is left-handed. He has been moved from A&E to a "pending" ward whilst RAIT sort
out his mobility issues at home. We are thinking of a bed downstairs as of course he hauls himself upstairs using both hands. He is very tottery as of course he hasn't been eating and I am afraid it would just not be safe if it were just me at home without help. He has had several falls over the past few months but fortunately without damage. Further good news (you can see what a cockeyed optimist I am) is that today's blood test was an improvement on a recent one, much to the A&E doc's surprise, given he now has more stomach pain and his general appearance.

You couldn't make it up.

Re: Stephen's Story

Posted: Sat Sep 02, 2017 3:33 pm
by Justamo
Actually, Sandiemac, you could make it up if you were a scriptwriter for a very bad soap who has to leave some dramatic cliffhanger at the end of every episode.

Has he got adequate pain relief ? Poor Stephen, and poor you. Hugs from me and purrs from Boris.
Love, Mo

Re: Stephen's Story

Posted: Sun Sep 03, 2017 11:48 am
by Wife&Mum
Dear Sandie
Big commiserations on Stephen's poor humerus. I hope you get him home very soon and that the house rearrangements make life a bit easier for you both.
W&M xx

Re: Stephen's Story

Posted: Mon Sep 11, 2017 7:48 pm
by Sandiemac
Well, it's got a lot worse. He was transferred from the "pending" ward to a "frail & elderly" ward, where he has been ever since (it will be 2 weeks on Friday). He has now developed pneumonia and the course of antibiotics ends tomorrow. The doc said she would have hoped to see more of an improvement than has been the case. He is now permanently on oxygen. Over the last 3 days there has been a really noticeable downturn and by today he hardly opened his eyes, hardly spoke and barely seemed to know I was there. Everyone gave up days ago trying to get him to eat and he had the occasional Ensure. Even that has almost stopped.

They are saying we may be down to days rather than weeks. We know the antibiotics will stop tomorrow and it's then a case of what happens next. If he really is very near the end there seems very little point in trying to move him to a hospice or have hospice at home. However, I know that he would prefer to be at home because we have discussed it.

Thank goodness I rang my son in Portugal and said don't wait until the 12th (when he was due after our holiday) and he came the next day. He has been a tower of strength. My other son is at the end of a phone and will drop everything if necessary.

I know you know how I feel - we all knew it would come to this but it doesn't make it any easier. The only ray of light is that he will be spared further pain further down the line if the pneumonia hadn't happened.

Re: Stephen's Story

Posted: Mon Sep 11, 2017 8:52 pm
by Proud Wife
Hello Sandie

I'm so so sorry to hear the latest on Stephen. Thank goodness you are not alone, my son was invaluable when we were at the same stage. My husband passed at hospital and I'm glad he did in the end, there was no point moving him as it all went downhill so quickly. Is Stephen on fluids or have they stopped that too?

Yes, we know how you feel and that's why we are here for you whenever you need us.

When it's Stephen's time, whenever that may be, I hope and pray it will be peaceful and that there be no more suffering.

Big hugs
PW xx

Re: Stephen's Story

Posted: Mon Sep 11, 2017 9:41 pm
by Didge
Sandie I am so sorry. It does sound as if he is near the end. I well remember those days when they gradually stop eating even the ensures. Can your other son come soon? I will be thinking of you so much in the coming days xx