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Well 3 weeks on chemo all ok, this week week off, BUT - Monday beloved got pain in chest lunch time took oramorph ok, went to bed in afternoon got up tea time pain back and even worse, ambulance called for, blue lighted down to hospital, on route 2 heart attacks had to be zapped back both times, arrival at hospital rushed straight through to cath labs stent put into a artery in heart,(we now have 3 stents in duodenum billary heart)all this happened within 2 hours, got him settled in ccu, then they let me in, wait for it hes sat up drinking coffee and eating biscuits with wires all over him could not get my breath. Turns out clot in artery caused the attacks. So going forward we are home as if nothings happened with 5 more tablets to take for a year( we laughed at that one) appointment with oncologist rearranged for next Friday and next bout of chemo rearranged for a week on Tuesday, that's if we can go ahead we will have to wait as oncogist did say she could give him a heart attack with chemo. Well that's my week hope every body ok. Oh and thank you to Diane moderator for getting straight back to me on Tuesday and answering all my questions x

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Sounds like you have had a complete nightmare, you poor things, you must have been terrified. Glad to hear he his home and doing ok,and somehow you are keeping a sense of humour!

Nikki

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Just a tad terrified Nikki, its our sense of humour that's keeping us going, if we dident have that think we would have gone under by now. Oh and oncologist is in for it next week he says as she did say she could give him a heart attack but she did not say 2 lol x

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Hi Wacky, no wonder you post what next, you are certainly going through it, glad your beloved is feeling better now, please take care sandrax

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Thanks for all your support, think we are ok, plus side, oncologist appointment and next chemo (if happens) appointment all been changed already and I have had to do nothing just got a phone call and letter to advise change of dates next Friday and a week on Tuesday, good old NHS, also local doctor called this morning to say all beloveds heart drugs now on repeat perscription and if anything he can do just call. Phone just gone again and pallitive care women asking if she can come round next week to see how he is going on my god what have we done for all this do they know something we don't... as I have said before my glass is always half empty not half full x

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Wacky, I do hope you two are OKish. You are really going through it, but I love your sense of humour and at least you are getting loads of contacts and support with the medical practitioners. With us it seems to be me chasing all the time and very little help. The Macmillan nurse is absolutely useless, she was only in contact in the early stages and then just wanted to 'hold hands' and advised to smile bravely when the time came! We both asked repeatedly for help with diet and to see a dietician, but still nothing. At chemo this week, James had two weeks off, the first normal break after first cycle and second week because he wanted a longer break, the chemo nurse e-mailed her saying we wanted a bit more advice re creon and diet and she e-nailed back to say she didn't have a clue, ask the oncologist and she is suppose to be our liaison nurse! The oncologist won't be available again for a few weeks, due to holiday and commitments, so we're on own again.


Anyway James started cycle two last week, day one Abraxane and second day gemcitabine. Very tired the next day and just slept, not much better today and still having diarrhoea, although picking up tips from here he started taking Codine and about 10 x 40,000 creon per meal and is a bit better, also he had only lost half a kilo over last 2 weeks so that has definitely slowed a bit. James' chemo has been reduced a bit to help him try and gain some weight, the oncologist has said it shouldn't make much difference and is about trial and error rather than an exact science. I was a bit worried that it wouldn't be as effective, but he has said that wouldn't necessarily follow.


Today I tried to order some Codine from his GP, but that was a fight, then after promising to send a prescription to the chemist they didn't. Several more calls and one was faxed and I was asked to go back later, which I did but then they didn't have any Codine. At that point I nearly lost it, surely Codine is quite a basic drug, anyway I've been told they will order some and should get it Monday. In the meantime I've brought the lower strength commercial stuff from Sainsburys.


I am really busy at work at the moment, although with everything going on at home it's difficult, but I need to work and so find myself torn in all directions and cutting back on sleep to get everything done. I feel really bad whinging when you are so positive, that's why I've avoiding posting recently. This is a cruel, evil disease that is so hard to cope with and I wish everyone dealing with this the very best.


Fiona X

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Hi Fiona its nice to hear from you and yes we are Okish - everybodies journey is different and just as you think your on a nice run something else gets thrown in to the works. As for weight loss I have decided the dietcians are a waste of time, they take for ever to contact you and only thing we get told is eat crackers due to our duodenum stent. The way iam dealing is letting him have what he wants when he wants if he doesn't feel like eating we have some p0wered shakes (bit like complan) we got them from doctors says to make with water or milk for higher calories, well we make with half milk and half single cream and a scoop of ice cream so calorie count high, not good for heart as we have to cut fats down but been told to build him up - best of 2 evils at least hes getting something down him, Sine beloved been diagnoised I have not worked, been in and talked to them and kept them in picture they have been fantastic, with whats happened to us i would not have been able to go in and concentrate , taking some time off if you can will give you time to get things sorted its certainly helped me. Keep your chin up the best you can and we are all thinking of you x

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Well as I have said before nothing straight forward and so it continues. Fri Sat night return of acid slightly but enough for him to be sick once sick felt ok. Not had acid since first diagnoised. Contacted our specialist nurse and went to see consultant yesterday who originally diagnoised us, ended up having a ct scan, turns out we have a slight crack in the duodenum stent, so we are back in next Tuesday to have the stent replaced. Now then the nicey nice lady was coming to see us yesterday had to cancel and rearranged for text Tuesday so will have to ring and cancel again think I will leave that one till we have seen oncolgist Friday re more chemo or not. Hope every body is ok or as right as we can be x

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Well seen oncologist today, they can not say what as caused heart attacks, but we will not be having abraxane anymore. She is not giving up on us (thought she would discharge us today)but would like it if we did not throw any more spanners in the works, her words and wants to see us in 6 weeks time and we will take it from there. So lets get next week over with the replacement of the duodenum stent then we have 5 weeks no hospitals I hope x

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She sounds like a great oncologist, and 5 weeks no hospital does sound lovely. Tell that man of yours to behave himself so you can have a break from all the stress!

Nikki

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  • 1 month later...

Well we are at that six month point and what as happened in that time, duodenum stent, jaundice, billary stent, billary sepsis, chlongis, turned into a diabetic,3 weeks of chemo, 2 heart attacks, heart stent, replacement duodenum stent due to fracture, constipation, four stone weight loss, but best bit we are still here and fighting, went to oncologist Friday who said she had never had a patient like him and he was like a cat with nine lives (we have used a few in my view). Beloved says at moment best he has felt on this journey still tired a lot but if we take things steady ok, we have good days and we have bad days oncologist not wanting to do anything at moment due to him feeling good so plan is go beginning November for scan and then end of November to discuss, hope we get to that point,(will be 55 in Nov)but who knows things can change just like that and we have no control what so ever over this B thing, Love to everyone on the forum and keep fighting, and for those who have lost recently so sorry x

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Hi Wacky, its good to hear that "beloved" is feeling ok, you are certainly right in that we have no control over the "B" thing we just have to go with the flow so to speak. I hope he continues to be well and that the scan shows good things, take care sandrax

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Your beloved is definitely a tough one Wacky. I read your post out to Paul and he now thinks he has had it easy! Crossing my fingers that he continues to feel good, and you can have lots of good days.

Love back to you,

Nikki

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  • 1 month later...

Well hes been for his paper and now hes gone down road to put his bets on. So while this is happening we must be ok. We go for a full scan today to see what is happening results last Friday in month. First mile stone hit this week his 55th birthday next one Christmas. Feeling for every one with this B and keep wondering what will happen later on down the line for us, there is no pattern. Chin up wacky keep smiling x

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Yes good luck for the scan, Trevor has his a week today, to see if the folfirinox is working, on this cycle.

Happy belated birthday to beloved, hope his bets win lol, and hope he still stays well, glad things are still going ok, try not to worry about the future just live for today, that's what we try to do. lovely to hear from you take care sandrax

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Hope he had a good birthday and good luck with the scan. We are at that 3 month scan time too, he had it today. And I used to be a racing person so hope the bets came in!

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Happy birthday to Wacky's beloved. Paul had a birthday last week, the second now since diagnosis and it does feel an achievement to reach those milestones! Keep smiling and keeping us smiling too Wackyx

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Well went for scan, took as long to get a car parking space as it did for him to drink the fluid and have the scan. Thanks all for your support. Hes back down road for his winnings, only puts a few pounds on at a time so we are not going to be millionaires lol. So we wait now till end of month to see the grim reaper (oncologist) beloved named her that as she never as any good news, you have to laugh. Looks as if we are all having scans at same time, lets hope someone gets some good news. Thinking of you all wacky x PS hes just got back and he won 81p what can I say ........

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Hi Wacky,


Had to answer this, as my dad loves betting on the horses too. The main time he leaves the house is to walk down to the betting shop.


You're husband seems to be doing really well. I really hope it continues for you both, and for him to keep betting.


Leila xx

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Well you don't have to have chemo to have fun and games with this B. Over weekend breathlessness and dizziness. Tuesday beloved asked for Dr. Dr came to house chest clear blood pressure low and 2 viles of blood taken and a prescription for antibiotics given, did tell Dr we had had a scan Thursday previous. Two hours later call from Dr to say scan showing slight infection on lungs so antibiotics would sort that. Two hours later call from Dr to say red blood count down and we might need a blood transfusion,he would get in contact with our oncologist. Wednesday call from Dr asking how we are and to say left message for oncologist as she was not working today. Yesterday call from oncologist asking how he is, and yes needs a transfusion, and come in when hes ready. So beloved went in late yesterday afternoon and transfusion over night. Have just spoke to him and he says he feels like a new man no dizziness or breathlessness so all good. But best bit while speaking to oncologist she did say every thing looked ok on scan and the B had only grown slightly and she was well impressed with that to say we only had 3 weeks on chemo and would talk more at end of month. So all good, wonder if metformin helping remember Didge sent a link you never know funny old world we live in x

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Glad "beloved" is feeling better now, he certainly keeps you on your toes Wacky, lets hope they can get him on some treatment for the little B, to keep it in check, take care sandrax

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