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Quickasyoucan
Posts: 93
Joined: Tue Jan 17, 2017 10:06 pm

Re: Thanks for sharing your experiences . . .

Postby Quickasyoucan » Tue Jul 11, 2017 8:57 pm

Mo so great to hear Peter continues to enjoy life. Your posts are a ray of sunshine. X

Didge
Posts: 794
Joined: Sun Dec 29, 2013 10:35 am

Re: Thanks for sharing your experiences . . .

Postby Didge » Wed Jul 12, 2017 1:47 am

Middle of the night greetings Mo! Glad to hear about the golf. And the tennis! Still getting used to Wimbledon starting a week later so that my birthday this Friday will be men's semi finals day, not that I'm complaining. My daughter's wedding is in 2 weeks and I've still not sorted out the music I'm playing then a week later I'm organising a music weekend in Canterbury and I'm short of a cellist so if anyone knows an amateur cellist feel free to speak up! Love to everyone in our crazy tough pc world x

sandraW
Posts: 997
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thanks for sharing your experiences . . .

Postby sandraW » Wed Jul 12, 2017 9:05 am

Mo,
I am so glad you have had an "ordinary day" may you have many more, good to hear Peter managed his round so well and that you did such a wonderful job with organisation, you more that deserved the garden voucher I am sure. sending love to you both and of course Boris too.
take care sandrax xx

Proud Wife
Posts: 720
Joined: Sun Jan 17, 2016 9:28 am

Re: Thanks for sharing your experiences . . .

Postby Proud Wife » Wed Jul 12, 2017 10:59 am

Thank you ever so much for making me cry Mo, much appreciated!!!!!!

I think it was your comment about just being happy with an ordinary day. I know exactly what you mean. When you have good days, it's like all your christmasses coming at once. I remember my hubby sitting in the garden of a local pub, drinking a coke (he didn't touch alcohol after diagnosis) in the late afternoon sun, a few weeks before he died. He was struggling to walk by then and we were debating whether he should have any more treatment after just one cycle of gem/abraxane which was a 2nd line treatment almost finished him off. He was just so very happy to be sitting in the fresh air doing what normal people did. He told his oncologist he'd forgotten what a normal day could be. Whilst the decision was taken out of his hands with a rapid decline, it just made us realise that quality was far more important than quantity.

I aim now for what my son and I call "an acceptable day". Simply put, a good day is a bonus. I think that applies to both sides of the divide. My hubby and I had 9 really good months out of his 14 and for that I'm so so grateful. It's helped. I hate to think how I'd be coping if we'd been robbed of that like so many have.

I'm so pleased the tournament went well. You put so much effort into it and must now be exhausted. I hope you can find some "me" time. The gift voucher was a lovely gesture. I know you will have such fun using it. I'm sorry but you did make me laugh out loud with your BOGOF comment, it shows your strength of character that laugh in the face of adversity.

Long may your ordinary days continue. Create memories, take as many videos and photos as you can and live for the day.

Lots of love to you, Peter and Boris xx

Marmalade
Posts: 40
Joined: Thu Jul 06, 2017 3:29 pm

Re: Thanks for sharing your experiences . . .

Postby Marmalade » Wed Jul 12, 2017 8:06 pm

Hi Mo,

So glad you have had a good week and don't you fret one bit about being smug. You are spot on with the good times being very special and I can't tell you how pleased I am that you are having this "ordinary" time together. That Peter is so well is due in no small part to your excellent care.

Good old Boris, he's got his priorities sorted out and sometimes it does us all good to stop thinking too much and just take pleasure in simple things.

Lovely to hear from you Mo,

Marmalade xxxx

PS am making marmalade this evening with from oranges - on my second batch. I've got to get them out of the freezer as my house is going into store in a couple of weeks!

Justamo
Posts: 400
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Wed Jul 12, 2017 8:33 pm

I took your tip about freezing the surplus Seville oranges, and every time I open my freezer I get the scent of orange groves ! Lovely !

Hope the storage and all the associated nitty gritty is not too traumatic. Your whole life ends up in black plastic bags . . . Good luck with it all Marmalade.

X

Justamo
Posts: 400
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Sat Jul 15, 2017 9:03 pm

Tuesday 11th July : "We have lots of appointments for scans and oncology clinics and stuff, but today was alright and I hope tomorrow will be too. "

Well, tomorrow wasn't OK. On waking on Wednesday, My Patient vomited noisily and copiously for about 15 minutes, mostly in the bathroom. Afterwards he felt floppy and weak, and spent the day lying down in front of the telly and directing operations at Wimbledon. Which is probably why Murray lost. He's been gloomy ever since. Not because of Murray, but because he feels he has taken a step back in his recovery. Peter thinks that now he's completed his chemotherapy and the subsequent scan showed the tumour to be stable, he is going to Get Better. And I'm not going to rain on his parade.

He hadn't eaten anything strange, his blood sugar was a bit high, and has been erratic ever since, but as his appetite is a bit erratic too, that's understandable. His temperature has stayed normal and there is no evidence of rigours. We'll mention it to the GP next week, but he seems OK today and demolished a large plate of salmon with vegetables and rice this evening.

The only possible reason for the sickness that I can see is because I was so smug about having a good day on Tuesday.

That'll learn me.

Didge
Posts: 794
Joined: Sun Dec 29, 2013 10:35 am

Re: Thanks for sharing your experiences . . .

Postby Didge » Sun Jul 16, 2017 8:06 am

This disease has so many twists and turns, many of them puzzling. But anyone who can devour a large meal is in a relatively good place on this journey. Is he in a watch and wait period now? Or is he just having a break from chemo with a planned restart? I do hope he enjoys the men's finals today and that the correct person wins for him whoever his chosen one is! Lots of love, Didge x

Justamo
Posts: 400
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Sun Jul 16, 2017 1:19 pm

Thanks Didge; just at present he is running the Mercedes F1 team at Silverstone and has used several new combinations of swear words at Sebastian Vettel who thinks he is p!aying bumper cars. Fortunately Hamilton and Bottas are obeying orders issued from the armchair so all bodes well at present. We're only on lap 39 at present so it will be a rush to get to Wimbledon for the men's finals.

He has completed 9 cycles of Gemcitabine and sees Dr Feelgood in September. The tumour is stable and CA19.9 markers have dropped from 135 to 36, so it's wait and see. Except for a bit of debris in his stent which caused a nasty infection and an overnight hospital stay some three weeks ago all is quiet on Planet PC at the moment. He has a scan booked for later this month so there's the possibility of a new stent in the horizon.

Did you get the musician issues sorted ? I used to be hot stuff on the recorder 65 years ago, but don't suppose that's much help. Marmalade is brilliant on the ukelele but she's probably got it in storage now pending her house move.

Love, Mo x

Didge
Posts: 794
Joined: Sun Dec 29, 2013 10:35 am

Re: Thanks for sharing your experiences . . .

Postby Didge » Sun Jul 16, 2017 1:51 pm

Ah Rob lived close to Silverstone and was an F1 fanatic. It would be his birthday tomorrow. Glad everything seems calm right now. I never found a cellist so we will probably have to manage without. I think someone is actually bringing a ukulele x

Justamo
Posts: 400
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Wed Jul 26, 2017 5:09 pm

All is quiet on Planet PC at present. My Patient is out with his little friends playing golf on a links course 50 miles away in a screaming hurricane and continual rain. But he rang at lunchtime to tell me all about the shot he duffed on the 8th, and the depth of the bunker on the 12th. And, oh yes, he remembered to test his blood and eat enough carbs so that he didn't slide gently to the ground while somebody was putting. It's considered quite Bad Form to put your opponent off his game by collapsing during a match - there's probably an R & A rule about it somewhere.

It's just about a year since all this started. And then all he really wanted to know was "When could he play golf again ? "

Things looked so bad a year ago I don't think anybody expected him to pick up a club again.

And I am not going to tempt providence by saying that today is a good day because the last time I did that we had an Episode. So it's just a normal day, except that I cleaned the oven which was on the point of being condemned. And I had a good old natter with the girls at the pool. And it's POURING so I might nip out to the garage and build an Ark. With space for Boris and his watering can.

What nonsense.
Love, Mo

Marmalade
Posts: 40
Joined: Thu Jul 06, 2017 3:29 pm

Re: Thanks for sharing your experiences . . .

Postby Marmalade » Thu Jul 27, 2017 5:12 pm

Hi Mo,

Glad the boy is out with his clubs and you got a swim. It's absolutely fabulous that Peter has had another year and is doing ok. This disease certainly makes you have a good look at your priorities and you have done really well too. I hope you take care of yourself and your health issues. You need to be in tip top condition too.

I have cleaned two ovens this week so I fully understand your sense of achievement!

Love to all,

M xxx

PS in my holiday home and handed the keys to the old house over today.

sandraW
Posts: 997
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thanks for sharing your experiences . . .

Postby sandraW » Fri Aug 18, 2017 2:18 pm

I hope all is well Mo, I keep looking out for your posts, hopefully you are just busy having normal days take care love sandrax xx

Dandygal76
Posts: 718
Joined: Sat Mar 12, 2016 9:49 am

Re: Thanks for sharing your experiences . . .

Postby Dandygal76 » Tue Aug 22, 2017 9:41 pm

Hey lovely Mo. I also hope all is okay. Let us know when you can. X

Justamo
Posts: 400
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Wed Aug 23, 2017 7:59 pm

Hello. Remember me ? I used to post about four times a day and bore you all stupid.

I have spent the past 6 weeks or so with my head in the sand, pretending that Planet PC is as remote as Jupiter. Gardening, sewing, computering, designing, swimming, sheltering from the rain, all sorts of things, none of which is connected to PC. I even bought a wrist thingy that nags you when you put your feet up for five minutes to make sure I exercise enough.

But - I think the carnival may be over. Perhaps not over, but coming to a halt. Despite this ghastly disease we have had a mostly good year, except for a skirmish with Mr Bogeyman the Manic Surgeon, and an issue or two with the Fat Dietician, and apart from an admission to hospital for an infection in his stent, My Patient has done remarkably well. He has played golf most weekends, has driven his electric buggy round the course, fallen off it once, and even refereed some matches. If he has a busy day then he spends most of the next day in bed, and why not ? The really good thing is that he's had no pain. Until now.

I have noticed over the past 3 or 4 weeks that he is hiccuping a lot. And he's been complaining of pain. "Did I think it was indigestion ?" No, I didn't. And he's feeling bloated and, in his words, bunged up. "Perhaps it's a virus - Jimmy had it last week, he was as sick as a dog". And the pain is waking him at night. We have some slow release painkillers (Longtec) and some fast release painkillers (Shortec). I have tried, so help me, a thousand times to explain that he should take the Longtec 12 hours apart, and then use the Shortec for break-through pain, but it's a complete waste of my time. And now the pain has seriously disrupted his golf, so it was easy to persuade him to see his GP. He had a scan last week and has a long-standing appointment with Dr Feelgood for 1st September, so couldn't see the point of seeing his GP at this stage, but while we were at the hospital yesterday morning for an eye clinic appointment for him and an orthopedic appointment for me I rang his GP and managed to get an emergency appointment for the afternoon.

So on the way home from the hospital we went into his GP who explained, all over again, how Peter should be using his pain relief, and this time he paid attention. And on the way home from the GP I stopped at the barbers and told him that we weren't going any further until his shoulder length hair had been cut, (he was growing it for a man-bun, but that's a bit silly at 85) so we killed a whole flock of birds with one stone.

And then, while I put the kettle on and Peter explained to Boris where we had been all day, Peter finally acknowledged that he had a terminal illness and thought that, "We had better talk about hymns and things". Not in a sad or maudlin way, just wanting to tidy up practical matters. Peter has never before spoken about his illness in these terms, although we did see our solicitor to update our wills when he was first diagnosed. He had to be dragged to that appointment kicking and screaming, but we did get one or two major matters sorted out and ever since then the subject of his mortality has been off limits.

So we see lovely Dr Feelgood on 1st September and he will have the scan results. No matter what the scan results are I feel that matters have taken a turn downhill and I daresay you will all know exactly where I am coming from. But it's a relief that he now feels able to talk about the probable outcome of this illness and is accepting appropriate pain relief. He has agreed that we'll have a proper talk about things at the weekend, and then we won't have to talk about it ever again. He slept properly last night for the first time in ages, so I think he feels relieved himself.

And I saw the orthopedic surgeon who showed me last year's scan of my pelvis and it looks like crazy paving, except for the white blobs which is where they have tried to stick the bits together with Polyfilla. He is going to do another MRI scan to compare it with the last one, and send me for a DEXa scan, but he thinks I have more stress fractures and there's not a lot they can do about it. It's radiotherapy damage, so deal with it. I have to avoid sudden movements and jumping (!) but it's walking that causes problems and I need to be in good shape to care for Peter. So I'll cancel the ski-boarding holiday and postpone the bungee-jumping trip meantime.

Boris sends his very kindest regards to you all, he now has a plethora of sleeping bags (one in every room) and spurns his nice sensible water dish on the kitchen floor for his blue watering can in the garden. We are now in the midst of the annual spider-fest, and although he pricks up his ears when he hears me run screaming from the bathroom at 3 o'clock in the morning he's too comfy in his sleeping bag to get up and deal with the offending arachnid. I have now resorted to sleeping with the hand-held vacuum cleaner on the pillow.

I hope you are all OK-ish. I'm about to catch up with all the threads I've missed while pretending that there was no such thing as PC.

Love, Mo