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Re: Thanks for sharing your experiences . . .

Posted: Tue Dec 26, 2017 10:47 am
by Veema
Kinda wishing we'd had an egg sandwich and biscuit day as I face the detritus left from a 13 person dinner! I didn't even enjoy it. I said to Nige's lads yesterday that its hard to enjoy Christmas day as you're either entertaining or at someone else's house being entertained...part of me would have loved to have just slobbed out with the two of them and Phoebe in my pyjamas playing with the things Phoebe had got for Christmas. I love my family, but they are hard work. I have 3 of them has a bizarre wife who doesn't discipline their two unruly kids and thinks it's ok for them to play with expensive ornaments; one has a manipulative, scheming girlfriend who I refuse to have in my house...he still comes though but doesnt really participate; and the other brother (my favourite) would do anything to help anyone and was the only one I really wanted to be there. I dont think they realise how hard it is to do this sort of thing on my own. I can't even chill out today as I've to troop over to Nige's sisters for a party this evening.

Anyway...enough of my moaning. Your day sounded peaceful and uneventful, which is good in the scheme of things and like Marmalade says...there are other days for the salmon. But I do understand how you feel has won't ever be the same again.

Much love...


Re: Thanks for sharing your experiences . . .

Posted: Wed Dec 27, 2017 10:06 pm
by Justamo
Yes, Christmas Day was peaceful and uneventful Veema, and the high spot of the day was watching French & Saunders who never disappoint. Peter was more or less comfortable all day and I was so relaxed that I was horizontal most of the time.

Boxing Day was a bit more bumpy, and today was one long episode of sick buckets, tablets and phone calls to the doctor. The doctor came (it's always a different one, and the best of the lot was a trainee GP - except for Peter's own doctor who came a couple of weeks ago) and it seems that there has been a conversation with Dr Feelgood who has suggested steroids. The steroids were prescribed and administered, and stayed down for exactly 8 minutes and then reappeared in the sick bucket. He can get to the loo in time, but is a bit wobbly and I think it's wiser for him to stay put and use a bucket. Different anti-nausea drugs have been prescribed, too, but they also reappeared in the sick bucket.

So I didn't know if I should give him replacement steroids or not, and it's a high dose, so I phoned the MacMillan Nurse. We decided between us that since I had dissolved the steroids in water and a small amount may have been absorbed it would be best not to give him further tablets but just to wait until tomorrow.

Fortunately the last lot of painkillers stayed down, and he even ate some toast with his favourite cheese. Unfortunately this gave him enough energy to want to start moving furniture again, and to enquire why I had written all over the walls and why have I moved the bathroom. I have discovered that it's best to tell him very firmly that he's getting muddled up. He agrees meekly, and lies down again. It breaks my heart to treat my proud and dignified husband as though he were a stroppy toddler but it seems to work.

We have an appointment with Dr Feelgood on Friday. Once we have the result of the last scan and I know where we are I will know whether or not I need to thump on a few desks to get proper support and a Plan, or if this is all just a blip and things will even out in a short time.

And I haven't even started the dog's coat. I had meant to cut it out on Christmas Day, and get the nitty gritty done on Boxing Day, but I've felt to wretched about all this that I just couldn't be bothered. Yes, I know it's pathetic, and that I Matter Too, and that I Should Look After Myself, but if I want to have a little wallow then surely I'm allowed it ? A stiff drink might perk me up a bit, but drinking alone is never a good idea and it would probably make me maudlin. So a nice cup of tea, a Marks & Spencer Luxury Special Selection White, Plain and Milk Chocolate Biscuit, and a You Tube video will have to do the trick.

Speak soon
Love Mo

Re: Thanks for sharing your experiences . . .

Posted: Wed Dec 27, 2017 11:10 pm
by Didge
Oh Mo. I feel for you. I think we instinctively know what we need to do to lurch from day to day and if that means a wallow and a M&S selection that’s fine. I’m glad you got to a ‘normal’ working day before you needed people. I hope he manages to keep the steroids down tomorrow and that they perk him up a bit xx

Re: Thanks for sharing your experiences . . .

Posted: Thu Dec 28, 2017 9:58 am
by Veema
Hugs Mo....nothing else, just hugs.


Re: Thanks for sharing your experiences . . .

Posted: Thu Dec 28, 2017 11:31 am
by Wife&Mum
What Veema wrote from me too.
W&M xx

Re: Thanks for sharing your experiences . . .

Posted: Thu Dec 28, 2017 11:33 am
by Veebee
Hi're allowed to wallow and be a layabout. You've got a mentally draining job to do. Allan used to say to me "stop flying about and come and sit down". I felt that I had to always be doing something to prove that I was looking after him and that everything was as it was before he became ill. He wanted me to just sit with him and watch rubbish TV.

I'm sending you good wishes for Friday and keep eating the biscuits.

Vee xx

Re: Thanks for sharing your experiences . . .

Posted: Thu Dec 28, 2017 2:16 pm
by patrigib
I feel so sorry for both of you. I know so well what you're going through..... have tried biscuits, crisps, chocolate, Belgian beer, but nothing really helps, you just have to go through all this....
Hugs !

Re: Thanks for sharing your experiences . . .

Posted: Thu Dec 28, 2017 7:48 pm
by Quickasyoucan
Mo we are all with you every step. Hoping for moments of peace for you,Peter and Boo. It's a hard slog. Chocolate and tea are a good option tho you are a stronger woman than me to resist a stiff drink!! X

Re: Thanks for sharing your experiences . . .

Posted: Wed Jan 03, 2018 7:55 pm
by Justamo
We saw Dr Feelgood last Friday (was it really only Friday ?) and he was able to tell us that Peter had 'one or two spots' on his liver. Chemotherapy might buy him a little more time, but at present he wasn't fit enough to take it. So he suggested that we see the dietitian - not sure if he meant the one with anorexia or the one with the bosom that rested on the desk as she spoke - but as I have learned far more from this site than any of the dietitians we have seen I didn't pay much attention. He suggested seeing us again on 12th January in the hope that Peter may have gained some weight and then we could discuss chemotherapy in more detail.

Since then we have been on a downward spiral. Peter has been eating less and less, vomiting more and more, enduring more and more pain . . .

On Hogmanay I had to call NHS 24 and they sent a lovely doctor out from the hospital. The major problem was nausea, and she gave Peter an injection of Cyclizine which settled him fairly well. He only managed 1 Fortisip bottle and 2 half cups of tea and about half a litre of water all day despite the injection. We got through New Year's Day in a similar fashion, but without the injection, but the following day (which is also a public holiday in Scotland) I had to call NHS 24 again. This time it was for pain, so I was more than prepared to wait the 25 minutes or so that I queued to speak to a person rather than a robot. An important little doctor came from the hospital, bustled about and examined Peter cursorily. He thought we should just continue with the painkillers we had, and - wait for it - "save the stronger stuff for when the pain gets worse later on". Fortunately, Peter was not having a particularly lucid moment when Dr Death said that, so he missed it. I didn't like the man at all and was delighted to notice that Boris had endowed his black coat with lots of white fur. I hope he got a puncture on the way back to hospital.

Today our GP phoned because they had received reports detailing the call-outs. GP suggested that she come out to see Peter, and perhaps do a full review of his medication. She spent AGES with both him and me, both separately and together. Peter flipped off his concentration button after ten minutes or so and relapsed into total confusion, but ten minutes was enough for GP to make an assessment. Between us and the MacMillan nurse, it has been decided that Peter should be admitted to the hospice tomorrow for a few days in order that his medication can be stabilised. I have prayed to every saint in the calendar for this course of action, and I think that St Jude (Patron Saint of Hopeless Causes) must have been listening today. An ambulance will call tomorrow between 0800 and 1000 to collect us.

I have tried to explain this to Peter without much success because now he has totally flipped out and is in his own world. At present he thinks he is in an hotel, and is glad that I am in the room next to his. He can't remember where the bathroom is, so needs steering a little at the appropriate moments. Although it breaks my heart to see him in this state of utter confusion, part of me is pleased because he is escaping the grim reality of it all by retreating into his own zany world, where we live in hotels and the MacMillan Nurse is a customer to whom I am selling a car.

Tonight I tried to shave Peter because he has got more designer stubble than the whole of Take That put together. It was not a success. Peter is so smart and dapper and particular about his appearance (that's what National Service did for most men of his age) that he would be horrified if he could really see himself. Fortunately I fell in love with the man, not the tailor's dummy, so it doesn't bother me one jot.

So we're in a holding situation at the moment. I am helping him back to bed at 20 minute intervals, and he calls out to ask me the time every few minutes. I think it's going to be a long night. Boris has taken refuge in the cupboard and I'm trying to type this in my study with Peter turning my light off every time he gets out of bed. Some of the doctors we have seen over this period maintain that the confusion is caused by the painkillers. I don't think so, because the confusion started long before the painkillers were increased, but what do I know ?

I have been too choked to post until now, but the hospice seems like a small ray of sunlight in the middle of this awful gloom. I hope they give him back to me again once they have sorted out the medication, but I'm only dealing with this one day at a time.

Love and thanks - I've felt all the vibes and e-hugs from you.

Re: Thanks for sharing your experiences . . .

Posted: Wed Jan 03, 2018 8:15 pm
by Veema
Big love Mo...I've been waiting on tenterhooks to hear from you...sounds like an eventful few days and I'm glad the hospice will provide you with a bit of respite and hopefully sort out Peter's pain. The confusion might be down to the liver not getting rid of the body's toxins efficiently and they build up in the you say, that might be better for him to not really know what's happening. I remember Nige kept asking me to find out if Jeremy Corbin had become was nowhere near the election, no idea what he thought was going on...he also went back several years to when we used to work together and was checking that I'd done various things on jobs I worked on 10 years ago or more!

Peter has done amazingly well Mo...he always seems to bounce back from whatever this disease might throw at him and that's down to your love and care as well as his shear determination. I do hope he bounces back from this.

Keep us posted when you can...we know how difficult it is to grab a minute to yourself at times like this.

Loads of virtual hugs and hand holding.


Re: Thanks for sharing your experiences . . .

Posted: Wed Jan 03, 2018 8:22 pm
by Marmalade
Well done Mo,

Good course of action, I'm sure they are the right people to make him comfortable. I've known this happen a few times, just needs a bit more palliative experience to get them back on an even keel. I think you might rest easier too knowing he is safe. Good old Saint Jude x

I know what you mean about the shaving, just like Louis. Suzie told me that Louis' hallucinations was toxins which the liver could no longer process properly, affecting the brain. They came and went with Louis, I've checked back and I asked people on here if any of their patients had suffered hallucinations. It could be a mixture of that and drugs, nothing is ever straightforward with PC.

Make yourself comfortable somewhere near for the night darling Mo, and rest if you can. All shall be well, and all shall be well, and all manner of things shall be well - thats a bit of Julian of Norwich, something Louis and I clung to when things were a bit at sea.

M xx

Re: Thanks for sharing your experiences . . .

Posted: Wed Jan 03, 2018 8:27 pm
by Quickasyoucan
Mo your post takes me back to last year. Dad had all the same issues minus the confusion but plus terrible swelling of everything below the ribs to his feet.
The hospice was our saviour for symptom management, support for all of us and comfort for dad. He came out much better than he went in. I hope and wish for you the same experience. Xx

Re: Thanks for sharing your experiences . . .

Posted: Wed Jan 03, 2018 11:10 pm
by Didge
Mo your hotel comment took me back. Rob thought the hospice was a hotel what with all the room service and kept asking me what time we had to check out. I pointed out that I’d expect a better bed if it was a hotel! I do hope you get a bit of sleep tonight. I’m sure you’re both find the hospice reassuring. And that you get a visit from the palliative consultant pronto. Don’t be shy in asking for a guest room if they have one if you want to stay. Those chair-beds are not very comfortable. Xxx

Re: Thanks for sharing your experiences . . .

Posted: Thu Jan 04, 2018 6:41 am
by Justamo
It's 06.30 and I've been following Peter around all night, replacing furniture and trying to repair his TV. The room is full of fieldmice which he is trying to chase, and in despair I rang NHS 24 again and listened to their advice for 30 minutes while in the queue.

I finally spoke to a doctor, who said she would come out, but I asked if I could give him some Temazepam. She thought that would be a good idea, so now he's hallucinating in bed instead of going from room to room. He's talking gobbledegook now, the only recognisable words begin with f, which is unfortunate. I am sitting crying from pure exhaustion as I type this.

The hospice ambulance is scheduled for some time between 0800 and 1000. Hope it's early.

Re: Thanks for sharing your experiences . . .

Posted: Thu Jan 04, 2018 8:00 am
by Wife&Mum
Dearest Mo
I hope by the time you read this that Peter is resting comfortably in his hospice bed and that you are managing to catch your breath after all the unwelcome excitement of the past few days.
Thinking of you both and sending my best wishes for some well-deserved peace and calm.
Loads of love
W&M xxx