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Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Tue Dec 19, 2017 4:54 pm

This afternoon My Patient has graciously waved goodbye to a visitor, and has settled down comfortably under his quilt for a short rest before I serve a carefully planned light supper which will feature prawns and some rice. And if I had any valium I would be chewing them like Smarties (other choc sweets are available). I already have a twitch, and have worn a path in the landing carpet where I have been pacing up and down.

Peter was discharged from hospital on 8th December and spent a couple of days with 'normal' pain and a 'normal' appetite before the roller coaster began to head downwards again. On 14th December we had to attend for a CT scan which was in preparation for an appointment with Dr Feelgood on 15th December, except that Dr Feelgood's appointment has now been postponed until 29th December. Which, as things turned out, is probably just as well. After the scan Peter felt well enough for us to go and get something to eat out and then we went home.

On the Friday, things were not good. He just didn't seem 'right', but I couldn't figure out what was wrong, until about 9pm when he asked me for a screwdriver. He wanted to fix a lamp and had partially dismantled it. There was nothing wrong with the lamp. Then he didn't like the furniture, and wanted to move that round to 'make room for his visitors'. There were two men sitting in his room (no there weren't) and they would fight if they had to sit near to each other. He had lengthy conversations with each of them and told them in great detail about a job he was working on. I mildly suggested calling the doctor, and he went completely ballistic. Eventually he dropped off to sleep and I stayed alert all night in case he woke and was confused again.

Saturday and Sunday things were even worse. He was aggressive, hallucinating and disturbed, and the only reason I didn't ring the out-of-hours service was because I'll never forget the look of sheer terror on his face when he was admitted to hospital during the last bout of 'confusion' and didn't know where he was. On Monday morning I rang his own GP, and, praise be, he came out personally and spent the best part of an hour chatting to him. The strange behaviour had ceased when he woke on Monday, but sadly he could remember nearly all of it. GP said that he would check the last CT scan of Peter's brain (taken when they thought he had had a stroke after losing his speech temporarily), told me that if it happens again I must get help straight away, and promised to ring back with any information gleaned from the scan.

When he rang back he told me that there were no brain mets that he could see, but that we would shortly have to have a conversation about sedation if this happens again. I'll handle that when the time comes, and have filed it away in the back of my mind for now.

Meantime, things are peaceful. I even had a bit of a nap yesterday afternoon to make up for three lots of night duty over the weekend. I have replaced all the medication which Peter poured into his sharps bin during the confused period and at the first sign of any problem recurring I have a safe place to store everything where he can't interfere with it. (Boot of my car). I am reassured that this has happened to other people, and that sometimes it's just an isolated event, and that GP is speaking to Dr Feelgood so that he knows exactly what's going on.

GP also doubled Peter's pain relief, which may sedate him a bit, and I'm clinging to the wreckage. Just.

Love, Mo

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thanks for sharing your experiences . . .

Postby sandraW » Tue Dec 19, 2017 6:57 pm

Oh Mo, what a horrible experience for you both. I just wish I was near enough for a coffee and a chat, and to take a turn with the pacing.
You should really have rung for help, but I understand exactly that you didn't want to upset Peter again, its all so hard and so bloody scary.
I have no suggestions to offer as to what it might be or how to manage it either so I'm not a lot of help, but I am thinking of you both, and was awaiting your posting, just hold on tight, sending a big cyber ((hug)) take care love sandrax xx

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Tue Dec 19, 2017 7:35 pm

. . . Just had a convulated conversation regarding the advisability or otherwise of putting chocolate in your central phone hub.

No, I don't know either, but he's gone to sleep now and I will monitor the situation once he wakes.

Seemed OK up till now.

M

Marmalade
Posts: 59
Joined: Thu Jul 06, 2017 4:29 pm

Re: Thanks for sharing your experiences . . .

Postby Marmalade » Tue Dec 19, 2017 10:36 pm

You are doing amazingly well with the many facets of this disease Mo and being a little too stoic sometimes but we have all been there too.

Having the hard conversations has to come and I would encourage you both to do this as it sets the path of how someone wants to be treated, where, and by whom. It also takes away an elephant in the room and need not be constantly referred to. Patient fears can be addressed and anxiety alleviated by the medics but they have to know this is an issue and that the patient wants to be made comfortable and less anxious. Sadly they tend not to prescribe for the carer who mostly remains anxious. The point eventually comes where our role changes, we move from keeping everything going to not hindering the natural process. I think when it comes, it is the hardest thing in the world to stop fighting for life.

All that said, Louis' hallucinations did not last long and he had good quality time beyond them. Peter has always bucked the odds and is still mobile, able to go to the doctors surgery and between episodes he seems to get about, eat a bit and be fairly independent. All very positive and he clearly has fight left, good for Peter and good for you, his loyal and loving nurse.

I wish you, Peter and Boris a calm and restful night

M x.

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Tue Dec 19, 2017 10:49 pm

Last week, when everybody was compos mentis, we had The Conversation with Peter's GP, and duly have a DNACPR form on file.
All quiet on the PC Front at present, Peter has been topped up with his increased dose of painkiller, so I'm watching stupid videos on YouTube but will go to bed presently.
I can feel the vibes ladies, thanks.
X

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

Re: Thanks for sharing your experiences . . .

Postby Quickasyoucan » Tue Dec 19, 2017 10:52 pm

Mo I feel your pain and still remember sitting on the stairs outside dad's room before he went to the hospice for symptom relief. You want to help but you can't and in his case he didn't want assistance from me with toileting but couldn't manage on his own and kept yelling go away I am ashamed. Please get as much help as you can you simply shouldn't have to do this alone. One other thing- my grandmother used to have grand hallucinations whenever she had a urinary infection- are they 100 sure it's the cancer and not an infection causing the visions? Sending love and support xxx

Marmalade
Posts: 59
Joined: Thu Jul 06, 2017 4:29 pm

Re: Thanks for sharing your experiences . . .

Postby Marmalade » Tue Dec 19, 2017 11:01 pm

Well done Mo, you did well xxxx

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Thanks for sharing your experiences . . .

Postby Didge » Tue Dec 19, 2017 11:22 pm

Oh yes the hallucinations could be due to a urine infection so worth checking. Hard to handle but I would only be worried about the aggression. Do take care! Rob only had mild hallucinations, that is until he saw a little girl in his hospice room on regular occasions. Let us know how things go. Lots of love xx

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Tue Dec 19, 2017 11:40 pm

GP eliminated infections on Monday, even he said it would be 'nice' to get a lovely tidy diagnosis like a urinary infection but everything was OK.

Boo and I are in bed, Peter has been up to the loo a couple of times but seemed barely awake.

My friend's mother saw a little blonde girl in the corner of the room just before she died and I thought it was probably an angel.

Night.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thanks for sharing your experiences . . .

Postby Wife&Mum » Wed Dec 20, 2017 8:18 am

So sorry to read about all the downs of the past week, it sounds ghastly.

Hoping that the 3 of you got a reasonable night’s sleep last night and that today all is calm in the Mo, Peter and Boo household.

And hats off to you Mo, you’re a real trooper!

Lots of love
W&M xxx

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Thanks for sharing your experiences . . .

Postby Didge » Wed Dec 20, 2017 9:08 am

These episodes of severe confusion seem to fairly common with PC. I know of a few people who have had brain scans when docs have suspected mets or similar but have come back clear. It’s strange. Anyway thinking of you today Mo. What did you have planned for Christmas? Is anyone visiting who could help? X

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

Re: Thanks for sharing your experiences . . .

Postby Veebee » Wed Dec 20, 2017 9:28 am

Hello Mo. I haven't been on the forum for a while as I find it upsetting but it's time I stopped being a wuss. I've read through your postings and I want you to know that I'm thinking of you and Peter and to say that you're handling the situation with your usual good humour and strength. Allan was confused at times but not to such an extent as Peter. I'm thinking of you both and really hoping that you can have a peaceful Christmas.

Love Vee xxx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thanks for sharing your experiences . . .

Postby Dandygal76 » Wed Dec 20, 2017 9:45 am

Hey Mo, what a nightmare you have had - lots of hugs from me. I would also worry mainly about the aggression because you would not want Peter to do something really serious to you inadvertently (and remember he did). It is such a hard time and I am grateful dad was in the hospital for the management of his symptoms not only because you can get immediate help for the patient but also because you get the help and don't end up so exhausted. Don't feel you have to do it on your own. If he was frightened when he last went in then stay with him if it happens again - don't worry about the rules. Management of that anxiety and fear is also what they need to do if it happens again, they can settle that very quickly with many options.

Wishing you a calm day.

Much love

xxx

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Wed Dec 20, 2017 10:09 am

At the risk of repeating myself (which I do all the time anyway), you are the loveliest people.

I have the makings of a gourmet Christmas lunch in the freezer, excluding the little Union Flags to wave while Her Madge does her speech (Gawd bless yer Mum). I have always catered an Irish Christmas - feeds 6, enough for 12 if you stick a few more spuds in the pan - but this year I have bought a modest turkey crown, some frozen roast potatoes (my dear mother would turn in her grave at the very thought of frozen potatoes), some frozen prepared vegs (ditto mother) and something called Pigs in Blankets from Tesco. All is snugly packed up in the freezer. It may or may not see the light of day, and if you get invited round to my place for a roast lunch some Sunday next June summon up another engagement immediately.

Peter woke in pain at 0530, despite 60mg of Longtec at 2200 last night, so I gave him some Shortec and he slept again until 0830. He seems fine this morning, and has had a lovely bottle of Fortisip for breakfast. The smell of that stuff (vanilla) makes me heave but Peter enjoys it and won't try any other flavour.

Boo and I had a nice cuppa tea at 0600 and then watched TV and dozed for a bit. We are hoping for a quiet day.

Reassuring to hear about others' hallucinations and confusion. Nothing new on Planet PC, is there ?

Can you get turkey flavoured Fortisip ? No, scrub that, he'll only eat vanilla.

Enjoy your day,
Love Mo

Sandiemac
Posts: 69
Joined: Tue May 10, 2016 11:27 am

Re: Thanks for sharing your experiences . . .

Postby Sandiemac » Wed Dec 20, 2017 12:45 pm

Mo, I am in awe. Your resilience and fortitude have me in tears. I am walking with you.

Sandie xx