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A bit of a worry....


Cathy

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Hi folks,


Thank you for your comments.


Steve, they didn't say but he is now on injections long term. In retrospect I wonder if we ought to have questioned the Oncs decision more at the time. He was put on heparin in the hospital and now on what Mike is also having - Tanzaparin. I'm not sure what the difference is but (this might interest you) it isn't as stingy as clexane and the needle is finer. Jonathan finds the injections much easier.


Jools - apparently is is much worse than post a snow ball fight. As for his weight - I wouldn't know, I'd unplugged the bl**dy thing before helping myself!!


If anyone wants to know what Jools's post was about, when in hospital I had been allowed to help myself to some spare wheelchairs on the ward to take Jonathan to the restaurant for a coffee and change of scenery. The best most comfortable looking wheelchairs that were easiest to steer didn't have foot rests. There was one ugly duckling left that did have foot rests but was a horrible uncomfortable looking plasticky thing with tiny wheels. It was plugged in(bit weird) but I unplugged it and Jonathan climbed on board. It was difficult enough to push without him in and with him in even harder but I did my best and got a little way up the corridor. Then a nurse appeared shouting "stop! stop!" and shrieking with laughter so much she could barely walk. I'd only been pushing him to the restaurant in the weighing machine. I felt such a fool. And as a friend later told me, I'd stripped the last Jenga block of Jonathan's dignity away. Fortunately he saw the funny side (2 days later)....


Cathy xx

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The weighing machine is hilarious! Cathy has now been re named Catherine Wheels.....not by me! Someone much quicker off the mark. Hope J doing well at home

June

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lol killed myself laughing at the weighing machine hahahaa .. still giggling now .. its the kind of thing I would do .. try and take my mom for a little wander in her commode

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Ahh Cathy or Catherine Wheels (love it). You and he are incredible to go through this still laughing. Made my day that one. If you're not stealing hospital equipement using him as a prop, you're upending him in front of A&E!


Take care m'dear and wishing you a simple, enjoyable, crisis free Chrimbo.


Lots of love


Sarah

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Brilliant Cathy


A real tonic and brought to mind the words of Rabbie Burns


O wad some Power the giftie gie us

To see oursels as ithers see us!

It wad frae mony a blunder free us,

An' foolish notion:

What airs in dress an' gait wad lea'e us,

An' ev'n devotion!


I did once attend a Burns Night and the next day discovered the real meaning of the oft used words "Where he is suffering from severe Burns" - a little to liberal with the malt nectar!!


Love and Peace


Merry Christmas and a Happy New Year to all our readers


Mike

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PCUK Nurse Jeni

Well Cathy, that certainly got me smiling and laughing! Memories of the ward days, and the outpatients days! Although, you were "lucky" if you had a fancy, plug in, sit-on scales! We were still stuck in the old days with the ones where you move the weight along a bar!!!! (not sure if any of you know what I am talking about here, but no worries!)


Anyhow, I can just see it! Jonathan sitting on board, with you pushing with all your might! As Steve says, that is why you are missed!

Thanks for giving us all a little laugh Cathy!


Jeni.

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Thanks Jeni and thanks everyone,


Steve, if one of the cheeky ladies on this forum has anything to do with it, probably yes!


Mike, not sure about seeing myself as others do, even with malt nectar... ;)


Jonathan has been a bit low since getting out of hospital which I put down to his being focused only on getting home when there and now he is home has been thinking a lot about what happened and the disease itself. He is much brighter today tho. We had a visit to the Onc this am who has said no chem at present while he recovers. It will probably restart early in the New Year. So, with 2 days to go, he is now looking forward to Christmas.


I wish you the best Christmas possible.


Cathy xxx

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Cathy, sorry to hear Jonathan has been a bit low, but to be expected I suppose. As you say focussing on getting out will have been all consuming and now needs something else to focus on, Christmas first, then onwards and upwards treatment wise!


Have a great Christmas both of you, you deserve it.


Julia xxx

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  • 2 weeks later...

Hi Cathy, glad to hear Jonathan is now back home. What a time you're having with it all!


How is he feeling today? Still going to your next onc appointment?


Jx

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Hi Julia


Yes, after 1 night in and 5 stitches in his knee he was discharged yesterday evening. The surgeons weren't overly excited about the wound so he didn't need to stay in as long as we thought initially and Jonathan was delighted about that. That last hour or so knowing you are being discharged but just need drugs (and in his case, his trousers!) is a long hour.


Managed not to knock quite so much paintwork off the doors with his wheelchair this time. The usual logistical challenge of getting him from ward to car (no parking nearby) hasn't got easier. Reminded me a bit of "It's a knockout" replete with crutches and 2 enormous bags of "stuff" (just missing the elastic bands and grease).


His chemo was stopped to let his leg wound heal. His Onc appointment is the 13th but stitches only out on the 16th so I am hoping (crosses everything) that they will give the go ahead for chemo to resume after the 16th and not delay things any further. In himself he isn't too bad but he has lost a lot of weight (despite me upping creons) down to him just not eating so much I guess. Still worrying about his tummy tho no-one else seems to be.....


Hope last night wasn't too grim for you Jools. I know you'd planned on spending it alone.


Cathy xxxx

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It was grim but lets not talk about that!


Did his wound look healed when they took the stitches out first time? (too early it appears!)


I used to drive the car up to the door practically, even if there was no spot available, I'd double park if I had to. This thing is stressful enough without having to faff about parking fgs! I'd bung the blue card in the window and stick invisible fingers up to whoever was watching.


It is worrying when they lose weight, I think more Haagen Daz is on the cards!


I also find it a bit odd no-one is investigating his tum. I know I was concerned about Ray's being a bit distended but GP was happy because it was still soft and it didn't, in the event, cause Ray in problems. I'd keep harping on about it, in the usual way that we have to, to get anything done!


Glad he feels okay in himself though, that's a bonus. Its not the weather for venturing out anyway so cosy up with the boa!


Jx

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Cathy,

So sorry to hear you have had another hospital trip, will be crossing everything for you for chemo to go ahead.


Paul has a very distended abdomen which comes and goes. He has had scans and ultrasound but they never really find a cause. His may be linked to adhesions post surgery, but no one knows and they aren't really bothered about it, but it really causes a lot of his discomfort. I am now starting to get the feeling they would like to say to me "he has pancreatic cancer, so what do you expect?". Actually might be easier if someone just came out and said it and then we could move on!


Nikki

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Hi, sorry to hear you are having s rough time, this disease is just so sneaky, isn't it! We are all on such a roller coaster.

Fingers crossed treatment can get started as soon as possible and things start to improve..


Bee xx

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Thanks ladies,


Jools, The problem was that the wound was partly on his knee joint so tho the rest of it healed just fine, as he kept moving his knee the wound just reopened when they took the clips out. I kept reminding him to put his feet up but whenever I looked over his foot was firmly on the ground. So he's now got some hefty stitches in. He's still able to move around pretty well but looking a bit thin and grey. Am hoping the GP will give us a prescription for high calorie drinks but while waiting for that am sneaking cream into things without telling him..... Hope I don't make him sick! :?


That's interesting re the tummy thing. I got the DN today to have a prod as well. That is 4 people I've accosted so far who have prodded and no-one seems all that concerned. I think it is causing him some discomfort tho. He is terrified someone will make him go back into hospital poor thing.


I'll feel a lot happier when treatment restarts. It was lovely having the break the last time but this time it's just stressful. Oh, and I've now got signed off work. It was getting all too difficult jiggling dashes to hospital with trying to do a full time job too. So now we are both watching cr**py rubbish on tv (great!)


Cathy xx

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Welcome to the cr--py telly club Cathy! Can also recommend whiling away hours playing candy crush, but don't tell anyone, it's my shameful habit!

Nikki

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Hoping hopalong is mending better now and ref rubbish TV I'm easy and quite like it. For a supposedly intelligent lass I get on well with dumb stuff. For those who like to keep their brain more than ticking over thoroughly recommend investing in a box set of West Wing, Dexter, Prime Suspect, Sons of Anarchy, Game of Thrones, Downton Abby, Boardwalk Empire, Suits, Thick of It, Sopranos or a.n.other depending on taste. They're always better back to back than on TV and if I had one main recommendation it'd be West Wing - absolutely fantastic series.


Take care both,


Sarah

XXX

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