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wackywacky
Posts: 99
Joined: Thu May 01, 2014 10:25 am

What Next

Postby wackywacky » Thu Jul 31, 2014 12:03 pm

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

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: What Next

Postby nikkis » Thu Jul 31, 2014 1:26 pm

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

wackywacky
Posts: 99
Joined: Thu May 01, 2014 10:25 am

Re: What Next

Postby wackywacky » Thu Jul 31, 2014 6:17 pm

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

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: What Next

Postby J_T » Thu Jul 31, 2014 8:17 pm

What nikki said,good grief! Glad to hear he is back home now and recovering.

Julia x

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: What Next

Postby sandraW » Thu Jul 31, 2014 9:52 pm

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

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: What Next

Postby jay » Fri Aug 01, 2014 10:40 am

massive hugs, hope you are both ok,
x

wackywacky
Posts: 99
Joined: Thu May 01, 2014 10:25 am

Re: What Next

Postby wackywacky » Fri Aug 01, 2014 2:11 pm

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

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: What Next

Postby Bowie » Fri Aug 01, 2014 11:48 pm

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

wackywacky
Posts: 99
Joined: Thu May 01, 2014 10:25 am

Re: What Next

Postby wackywacky » Sat Aug 02, 2014 7:51 pm

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

wackywacky
Posts: 99
Joined: Thu May 01, 2014 10:25 am

Re: What Next - Acid back

Postby wackywacky » Wed Aug 06, 2014 3:45 pm

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

wackywacky
Posts: 99
Joined: Thu May 01, 2014 10:25 am

Re: What Next - 6 weeks off

Postby wackywacky » Fri Aug 08, 2014 3:40 pm

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

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: What Next

Postby nikkis » Fri Aug 08, 2014 5:06 pm

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

wackywacky
Posts: 99
Joined: Thu May 01, 2014 10:25 am

Re: What Next - Who knows

Postby wackywacky » Tue Sep 23, 2014 3:31 pm

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

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: What Next

Postby sandraW » Tue Sep 23, 2014 4:11 pm

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

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: What Next

Postby nikkis » Thu Sep 25, 2014 8:32 pm

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