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Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Thanks for sharing your experiences . . .

Postby Dandygal76 » Sat Sep 24, 2016 5:13 pm

No Mo, It is not just you. We are all clinging onto the forum like we could never exist before we found it, life events have converged us all to this point and we are now all entwined in the tapestry that is life. I find huge respite in posting here but also so much sadness and fear at times. It is good for us all to have little giggle through this and the frank and open discussions also help us all (and can be strangely amusing at times). If we wanted too much fluffy soothing chit chat crap then we have everyone around us at home who happily oblige because they don't all really get it do they and they don't know what to say?

I am now imagining PW as Kate Winslet singing 'my heart will go on' with the wind blowing completely in the wrong direction for a dignified scattering of ashes. I totally agree thinking logically (would never have thought about that) - PW I think Mo is right, not the bow of the ship my lovely :). I think PW's hubby would also be smiling at this conversation knowing what I have learnt about his and PW's humour over time.

Much love to you all.

xxx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Sat Sep 24, 2016 9:32 pm

Right. OK. I'm back. I did go to Mass, I didn't hoover the stair carpet, the cat is still depressed and My Patient is up and watching Casualty. He tore strips off Strictly, failed to win the Jackpot in the Lottery Draw so is now consoling himself with Charlie and Duffy et al in a gory Casualty episode. I'm in my study with Radio 4 and a proper keyboard, not a Googly one.

PW. I had a brainwave at Mass. (You can tell it wasn't a riveting sermon, can't you ?). I know that you wanted to keep some of the ashes with you, so what about a little locket that you can wear on a chain next to your heart ? I'm sure something must be available and even if it isn't you could get something made. After all, it's not the quantity of ashes, is it ? It's just to have a tiny piece of him with you always. That doesn't sound naff, does it ? And if it does then you don't have to tell anybody about it. I know that you can send ashes to a company who will turn them into a diamond but I don't know anybody that's done it. Personally, I would hate that, but we all have different ideas about stuff. Furthermore PW, you and DG do not have exclusive rights to a warped sense of humour. Everybody on this forum seems to have a warped sense of humour, only some of us are more warped than others.

OK, so I'll bring you up to date. We went out for the day yesterday and the arrangement was that I would take Peter to watch a golf match, his friend would join us at lunch time, then I would skip off home to relax (oh yeh ?) and the two men would look after each other and enjoy the golf and drive back in the friend's car. Which was fine, except that the DN (Diabetic Nurse, please keep up at the back) changed the insulin and Peter had a whopping great hypo halfway up the 18th fairway while watching A Very Important Match at a Very Classy Golf Club. So I had to persuade him to come with me back to the clubhouse, feeding him dextrose tablets on the way, while he did a good impersonation of a drunk weaving across a golf course at 11 o'clock in the morning. I checked his blood which was red and drippy (to the horror of a couple of golf club wives who had watched this performance) and once the sugar went up a bit we had lunch. I judged him well enough to abandon at 2.30 and left him in the arms of his friend. They got home about an hour after me and Peter was rather subdued all evening.

This morning we did the injections as per the DN's instructions and I was in my study fiddling away with glue and paper and coloured inks when it occurred to me that everything was a bit quiet so I checked. Peter was scarlet in the face, asleep, but sweating profusely. I checked his sugar level and it was 3.3. I would have done a drama queen routine but didn't have an audience, so instead I fed him on 6 dextrose tablets and a drink, and checked his blood every 20 minutes until it went to 15 which is a 'normal' level for him. It's gone from 12 to 29.9 on a daily basis. The DN didn't leave me an emergency number, so I e-mailed him for further instructions and applied what shreds of common sense I've got left. This perishing illness has rotted my brain as well as poor Peter's pancreas.

It's left him feeling rather scared and vulnerable and very depressed. Which is why he's getting away with watching Casualty tonight. Under any other circumstances I would confiscate the remote control and tell him to pull himself together, but he's best left to Charlie and Duffy tonight I think. He's eaten a good meal (sausage and mash) and instead of a sugary pudding has had cheese and biscuits so let's hope the bedtime blood reading is OK. If it isn't you're going to have to plough your way through hourly posts from me because I won't be able to sleep and will be messing about with my tablet and buying stuff on Amazon while I'm on night duty.

DN e-mailed me with instructions to reduce the dose of each of the two insulins he has in the morning and confirmed that I had done the right thing. He also told me to text or e-mail him any time of day or night because the emergency back up is NHS 24 and they wouldn't understand the regime he has put in place.

9 days ago I didn't know a blood monitor from a Damien Hurst painting and if you had handed me a syringe I would have burst into tears. All of you reel off names of drugs with about 15 syllables quite casually and talk intelligently about advanced surgical techniques. The only 15 syllable words I used to know were the names of plants in my beloved garden, but the wheel turns and I end up with a supporting role in my own episode of Casualty. C'est la vie as they say.

Night everybody.
God Bless,
Mo

Veema
Posts: 497
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thanks for sharing your experiences . . .

Postby Veema » Sun Sep 25, 2016 7:02 am

Sounds like you've had a hectic few days Mo...hope Peters blood sugars settle.

I am doing the ashes to glass thing, never really thought it would be my thing either, but just now I can't bear to let him go, but I suppose it's all still very raw. I have a tattoo on my lower back which I had done in my early twenties, it's stretched and contracted with my yoyoing weight over the years and looks awful now, so I'm getting the funeral director to get Nige's handprint done and I'm having it tattood over the manky one...I'm also getting some silver fingerprints done...I just feel I need to keep as much of him as I can.

Vx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Sun Sep 25, 2016 7:45 am

You're absolutely correct to do whatever feels 'right' to you. And if you think any family members disagree with you, either don't tell them what you've done or don't discuss it with them.
Just at the moment when things are so raw I think you want to keep tangible memories, for the same reason that I have kept a nappy pin since 1974. But I think in time your memories will consolidate into a spiritual and emotional vibe which will stay with you forever. At one time I wanted to have the nappy pin silver-plated, but these days it's tucked away in my jewellery box and I only look at it when I'm looking for an earring.

I am sure Marmalade knows what I mean but can put it into words a whole lot better . . .

I am going to have a really good day, I'll deal with the stair carpet, I'll take eleven sheets to the launderette because it's too wet to get anything dried, I'll tidy my study, I'll prepare a few nourishing cordon bleu meals for the freezer, I'll clean the upstairs windows and do a bit of psychotherapy on the cat. This afternoon I'll clean both cars, sweep the paths outside and finish up by cleaning the oven. And I might tell a teeny weeny little lie or two as well.

Meantime I'll have another cup of tea and a quick look at the Observer.

Enjoy your day folks,
Xx

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Thanks for sharing your experiences . . .

Postby Proud Wife » Sun Sep 25, 2016 8:17 am

Hahahahahahaha you shouldn't tell porkies Mo, you will end up with a rather large nose. I've been reading your latest installment through blurry eyes having got upset over something which I won't go into here and you've made me laugh. Thank you. I feel that not a lot will make me giggle this morning.

You mentioned something on a previous post about the ashes belonging to your mother. I am a different religion to my hubby so cremation and ashes is something alien to me. I only want to do the right thing. I am actually having a little pendant made from the ashes (into glass) so it will hang as close to my heart as possible and I did ask hubby if that was okay to which he replied yes. Given my about turn in how I feel about disposing of the ashes now makes me wonder whether hubby is trying to tell me to keep them. When they first came home, I couldn't wait to get rid of them. Why the change of mind? Hubby knew if there was any way of communicating afterwards, we would! So you can look at it 2 ways. My thought to split the ashes into 3 (we always referred to our little family as 3 alone in the world as we have such little family) to keep some, bury some at sea and then bury with me when my time comes, seemed to come out of the blue.

I know I am waffling here so I will try to shut up....what I'm trying to ask then, purely because I know nothing about ashes and what people do with them....is are you saying they belong to hubby and I should scatter the entire lot? If I knew 100% that's what he wanted, I would do it without a shadow of doubt, even though it would break my heart to do so but....would hubby really want to cause me such distress when I am doing my utmost to cope with his loss as he asked me to do!

I actually took my lead from my sister in law who scattered her husband's ashes in lots of different places that he loved. Forgive me if I have already mentioned this before and am repeating myself but one such place was his office floor. I asked how on earth could she have tipped his ashes on the floor only to be trod on or swept up? Her answer - well he loved his office and therefore so what!! She is Dutch so I suppose that explains it (ouch!).

Well I shall leave you with the patient and the depressed cat to enjoy your day as much as you can. I do think though by the time you've finished your chores today by silly o'clock, you should take at least 5 minutes to put your feet up and have a well earned cup of tea.

Laters xx

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Thanks for sharing your experiences . . .

Postby Proud Wife » Sun Sep 25, 2016 8:27 am

DG, hubby would be cracking up. He'd fully expect me to do this from our cabin balcony making sure he left his mark on several other balcony floors (or cruisers heads) before making his way to the stomach of a great white shark. He'd find it even funnier if the wind was blowing in the wrong direction and he ended up as ice cream topping. Or as a sugar alternative for someone's coffee.

Unfortunately, in accordance with maritime law, you are not allowed to throw anything overboard and to be seen to do so would result in a swift removal from the ship (with no refund of fare). Cameras are on every deck which is why last year when we had to turn round 6 miles off the coast of southampton at 3am in the morning because someone decided they couldn't face going back to work after a lovely holiday and was caught on camera jumping ship. Literally.

I have arranged for the captain to do this during one of the sea days. I believe hubby would enjoy the pomp and ceremony of it all. And if in the future I feel or am told it's time for the rest of his ashes to follow suit, I will just have to do it all over again. Oh the inconvenience of having to do another cruise.... :)

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Sun Sep 25, 2016 9:02 am

Peter says that he wants a Viking funeral with fire and clashing swords. When we were doing wills a couple of weeks ago our nice solicitor looked askance at that proposal and tactfully suggested a local authority cremation and a discreet scattering of ashes instead. On the golf course - but where else ?

My ashes are going to County Kerry and will be scattered on my mother's grave. She is buried with her mother and grandmother. Older Catholics didn't used to approve of cremation but I think they're OK with it now. The post office in Dublin is constantly receiving parcels of ashes to be scattered 'on Irish soil' because Irish diaspora world-wide want to go home at the end.

How did we get to cruise ships and Vikings ? This thread continually morphs.

My Patient is arguing with the football pundits on the TV. He sounds quite perky and recovered from his misery and exhaustion of yesterday. He wants curry for dinner tonight so I'd better add marinating chicken to the aforementioned list. (Google just typed lust).

Enjoy your day !

Xx

sandraW
Posts: 1030
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thanks for sharing your experiences . . .

Postby sandraW » Sun Sep 25, 2016 10:12 am

Oh Mo you are a tonic and you really make me smile, I do hope the reduction in Insulin helps Peter feel better, we soon learn about the medications and administering them, its a case of having to. we become very knowledgeable in our field, very quickly.
PW My pendant is ruby glass, its cylinder shaped with the bottom cut off at 45 degrees, it fits just between by boobs, so Trevor would be happy. I find myself picking it up and running it round my mouth when I am sitting watching TV or relaxing, I was adamant that I wanted to keep all Trevor's ashes together, unbeknown to me the boys had arranged to have some taken out to have the pendant made. When they gave me it I was so pleased, overjoyed in fact, and cried my eyes out, the boys then though I was cross so they cried too. I love it, no one is necessarily aware its there but I just feel as though Trevor is always with me. But what's right for me is not for everyone, we are all different, I think keeping some of your husbands ashes scattering some at sea and having a pendant too is just right for you and that's what matters love sandrax xx

Marmalade

Re: Thanks for sharing your experiences . . .

Postby Marmalade » Sun Sep 25, 2016 4:00 pm

There is a Billy Connolly film where his grandchildren give him a Viking funeral. It's not that far removed from an Indian funeral on the Ganges. The film is called "What we did on our holiday" Louis and I saw it and laughed/cried but that was before he knew he was dying.. You could try this. Apparently the vikings put people in boats and them put the boats in a hole to set fire to them, we've got it all wrong…

https://qph.ec.quoracdn.net/main-qimg-6 ... _webp=true

M xx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Sun Sep 25, 2016 4:44 pm

Do you know, that is really creepy. I bought that film almost as soon as it came out on DVD and it's still in its wrapper waiting for a winter evening. It will have a whole new meaning now.

My Patient thought he would like curry for dinner and it's currently lurking on the back of the stove awaiting re-heating. I don't like Madras, I prefer Korma but I made a large batch of Madras because it freezes well and I'll have a salad instead.

Peter's blood has been swooping up and down today so I'm off to check it and then I'll cook the rice and open a tin of pineapple for the curry and the salad. Speak soon

X

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Mon Sep 26, 2016 6:55 pm

A bright sunny day, and the really great news is that Peter has gained 7lbs since last Monday. That makes him 9st 13lbs, which is really only 9lbs underweight for his height. I would like him to gain quite a bit more though, because he won't have this sort of appetite for ever.

Tomorrow he is having the stent replaced. A Staff Nurse phoned yesterday and asked me what dose of insulin Peter was taking so I told her it was being adjusted daily. "Yes, but what's the dose ?", so I repeated that I could give her today's dose, but it would probably be different tomorrow - and the day after that. "But I need to know the dose", she said again. Clearly this conversation could go on for several hours, so I gave her Sunday's dose and let her get on with it.

The heap of dirty (not very dirty) sheets has progressed from the bottom of the stairs to a bag in the back of my car. I'm not sure quite how my routine is going to pan out over the next couple of days so didn't want to take them to the service wash until I knew when I could pick them up again. Progress, of a kind.

I've been asked to take ALL of Peter's medication in with us tomorrow. And that includes my 'equipment for dealing with hypos'. The only equipment I have is half a tube of Dextrose sweets and a small tin of Lucozade. I went into Tesco this afternoon and bought another 6 small tins, and when I got home discovered they were sugar-free. Why sugar-free Lucozade ? I though that was the whole point of the stuff. So they'll have to go back and get changed. A 330ml can is a bit big to lug about, and the small tins are perfect so I hope they have them in stock.

I seem to have lost a bit of my mojo over the last day or two. Feel very flat, I think it's because I'm so tired. All this is so new to me and I've been treating the whole journey as though it's an Open University course. I've got to learn EVERYTHING all at ONCE. We all know what a stupid attitude that is but I think it's the way I'm made, i.e. The harder I work the healthier Peter will be. I'm being all brisk and efficient about stuff - you should SEE my notebook. Stand back, Mo, and let your mojo catch up. It always does eventually.

My Patient is blaspheming robustly right now because he can't find his bag for his pyjamas and slippers and stuff so I'll need to go and help him. His command of the English language is quite something at times like this and the combination of various words is quite stunning . . . . . And I don't like him swearing in front of the cat.

I may be back later, if not have a good night everybody.

Mo

Marmalade

Re: Thanks for sharing your experiences . . .

Postby Marmalade » Tue Sep 27, 2016 4:42 pm

Hi Mo,

Trips to the hospital are always hard work so I hope you managed ok today. I found I had to have everything with me, letters, medication (which I always refused to give up, they can get their own and anyway I might have needed it as they never give drugs on time) and anything else. I found I had to check everything as no one ever seems to read the file and this caused several "incidents" which are still under investigation! We were both glad when we didn't need to go. I am sure your lot are much more on the ball.

Don't bother about the washing, is there a local laundry who will pick up and return ironed? I bet there is, go on, treat yourself.

If being brisk keeps you going then you be brisk. On this journey you just have to do what gets you through and it will change as you go along. You are allowed to be tired or to have down days, it's not a rehearsal this is rough that people say you get with the smooth. I am still exhausted and I'm not caring for anyone but myself. We run on adrenalin mostly and when that runs out we have very flat batteries indeed. I think I am on a tiny trickle charge…

Fantastic news about Peters weight, it all helps and you have done a super job. You can't always make a difference with this disease (remember that) but this is an occasion when you can and did!

Much love and prayers for you both M xxx

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Thanks for sharing your experiences . . .

Postby Proud Wife » Tue Sep 27, 2016 5:15 pm

Fabulous news that Peter has put on so much weight in just a week! One and a half years ago when I knew nothing about pancreatic cancer, I'd never have imagined that weight gain could be so important or exciting. I totally agree, get whatever weight you can get on him, it always helps to have "reserves".

How did the stent go today, have been thinking of you xx

Veema
Posts: 497
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thanks for sharing your experiences . . .

Postby Veema » Tue Sep 27, 2016 9:56 pm

Just checking in to see how Peter's procedure went today.

Vx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Wed Sep 28, 2016 10:01 am

Procedure OK, another one today, will report more fully when I'm at my desk with a PROPER keyboard.

Only a forum like this would generate - do I mean inspire ? - so much love and support from people who have devastation in their own lives to cope with.

What terrible grammar. Sorry.
Love
Mo