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Lulu
Posts: 30
Joined: Fri Oct 19, 2012 6:05 pm

Re: No bed available at hospital for gastric bypass!!!

Postby Lulu » Sat Dec 08, 2012 2:05 pm

Hi Paul, know exactly what you mean, we too had to fight for creons etc. In fact our GP point blanked refused - we eventually got them when we got to the the oncologist at the top of the tree at the hospital. It's shocking how little knowledge there seems to be with primary care givers when it comes to this illness.
Creons have definitely helped Dad and I hope it will for Andrea. He's going through a bad patch just now but the creons have helped him gain some wight (5k) and flushing everything away in the toilet was a problem but the creons have solved that problem too. Hugs to you Paul, you are doing so well fighting your wife's corner for her when she cannot do it herself. As a wife myself I can tell you that having a husband like you will be helping her far more than you know. Lulu x

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: No bed available at hospital for gastric bypass!!!

Postby yorkypaul » Sun Dec 09, 2012 5:52 pm

Am a bit concerned that folks refer to creon capsules being big. Andrea's are tiny! Wonder if we have the right ones?

luce873
Posts: 15
Joined: Mon Oct 01, 2012 1:29 pm

Re: No bed available at hospital for gastric bypass!!!

Postby luce873 » Sun Dec 09, 2012 6:46 pm

Hi Paul,
Glad you and Andrea have managed to get your hands on creon capsules. Having had experience from mums creons, they come in different sizes related to the amount of enzymes in them. Mum started off with '10,000' x2 with every meal, now she's up to '40,00's x2 or 3 with each meal, depending on how much she going to each. I think that because they are normally, a naturally occurring enzyme you can't really overdose, just need to make sure she takes enough. Does Andrea see a dietitian? They are often the best people to advise on how much to take.
All the best, hope they help
Lucy x

luce873
Posts: 15
Joined: Mon Oct 01, 2012 1:29 pm

Re: No bed available at hospital for gastric bypass!!!

Postby luce873 » Sun Dec 09, 2012 6:50 pm

P.S. here's the link to more info xx

http://www.pancreaticcancer.org.uk/info ... t-is-creon

PCUK Nurse Jeni
Posts: 1106
Joined: Mon Jun 14, 2010 1:30 pm

Re: No bed available at hospital for gastric bypass!!!

Postby PCUK Nurse Jeni » Mon Dec 10, 2012 4:33 pm

Hi Paul,

Have emailed you with a response to your emails. Let me know the outcome and we can help further.

Jeni.

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: No bed available at hospital for gastric bypass!!!

Postby yorkypaul » Thu Dec 13, 2012 8:32 am

Thanks Lulu, Lucy and, of course Jeni. The anti sickness drug in the syringe driver may need to be increased as Andrea was sick during the night on Wednesday. I'm hoping it's just her getting used to the Creon, but who knows with this thing? She is so weak and tired all the time. I can tell by her voice that even talking on the phone is a real effort for her. That's why I restrict my calls to 4 or 5 mins max. Can't wait to be together again on Saturday afternoon. Her son is still staying with her. He is a pillar of strength. Yesterday the GP messed up yet again. Andrea would have run short of meds at the weekend! They were obstructive again! Andrea's son rang and told them to get it sorted NOW! They did!
Yesterday she had the funeral director visit so she could arrange things. I found it very hard to sleep last night, and today feel as if I have a lead weight in my gut. I need to put it to the back of my mind and focus on my lovely wife.
Thinking of you all,
. Hugs,
Paul

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: No bed available at hospital for gastric bypass!!!

Postby yorkypaul » Fri Dec 14, 2012 10:19 pm

She was sick again today. Everything that she had managed to eat. Nurse has suggested stopping Creon to see if that is what is causing it. That will mean no nutrition again. Anti sickness drugs have been increased yet again. I'm back up there tomorrow lunchtime (can't wait!). She sounds so so tired. She feels so let down on so many fronts and, apart from PCUK so do I. I hope and pray that fellow users of this site have a better experience of the NHS than we have. As I have said in other posts, (and have written to the CEO of the trust,only yesterday, to heap praise)only 1 of the 3 hospitals seemed capable. Even in this state, Andrea is able to find humour. She says that, in her case (please note:in her case)it stands for "No Hope Saloon". WE have just been unlucky. The outcome would have been the same, without doubt, but maybe she would not have suffered so much and felt so neglected.
Tomorrow is another day. I am determined to be more positive and to support the love of my life. I will do everything I can in the future (as will my daughter) to raise funds to fight this awful disease that takes no prisoners.
My thoughts and prayers are with you all, past and preasent, who have given such tremendous support.
Big hugs to you all,
Paul x

PCUK Nurse Jeni
Posts: 1106
Joined: Mon Jun 14, 2010 1:30 pm

Re: No bed available at hospital for gastric bypass!!!

Postby PCUK Nurse Jeni » Mon Dec 17, 2012 10:47 am

Hi Paul,

So sorry to hear about how tough things are for you both right now.

So sorry to hear that Andrea has started being sick again. Having looked it up, nausea and vomiting are documented side effects of creon, but to be honest, I have not heard of anyone suffering from this when taking it. Do make an observation about whether it stops when she is not on creon? I guess what the nurse is trying to do is to find out what changed in Andreas treatment since she last vomited, and then to stop this and see if it settles down. Sometimes, this is the only way to eliminate the cause. However, I wonder if it is this, or whether there is something else which is causing it?

Let us know if stopping the creon helps.

Kind regards,

Jeni.

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: No bed available at hospital for gastric bypass!!!

Postby yorkypaul » Mon Dec 17, 2012 11:51 pm

Thanks Jeni. We have restarted the Creon, as the nausea remained the same after witholding it for over 36 hours. Spoke to Andrea tonight and she was very tired with slurred speech. Nausea still present. Current dose of anti sickness meds via the driver now up to the max. She is trying to eat, bless her, but not managing much at all. Sleeps a lot of the time. Plenty of aids in the house via occupational help people. Next step will be a downstairs hospital bed. I can not believe how quickly things have moved. My lively, gorgeous curvy wife is a shaddow of her former self with little interest or energy. She has no pain at the moment due to the meds, but can not get comfortable and says she feels "strange" a lot of the time. I will be back up there on Thursday through till Sunday.
Stay strong folks. You are all in my thoughts even though I am not posting as much as before. You are in my thoughts and prayers. Hugs
Paul x

Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: No bed available at hospital for gastric bypass!!!

Postby Sammy-Lou » Tue Dec 18, 2012 10:30 am

Oh Paul, I really feel for you and Andrea, I do hope that something can be done about the sickness as that must be exhausting in itself. I don't know if they have tried changing Andrea's antisickness to a different medication or not? My mother-in-law is suffering terribly with nausea and sickness and has been throughout the last 3 months, the one thing the hospice care team seem to be doing on almost a fortnightly basis is changing her antisickness, she will find it may help a bit at first and then maybe the following week she starts to get the nausea and vomitting again but the nurses seem to think there is a med to help it's just a case of finding the right one.
I will be thinking of you and hope that Andrea continues to be in no pain and can be as comfortable as possible, sending love and best wishes
Sam xx

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: No bed available at hospital for gastric bypass!!!

Postby susikus » Tue Dec 18, 2012 6:05 pm

You and Andrea are never very far from my thoughts, Paul. I hope you have a lovely Christmas together and that Andrea is comfortable. I am sending you every good wish that I can muster. I feel that Pete is here with me as I prepare for Christmas and in a funny kind of way life is good and awful, all at the same time. Love to you both, Sue, xxx

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: No bed available at hospital for gastric bypass!!!

Postby yorkypaul » Fri Dec 21, 2012 10:14 pm

Thanks Sam, Sue and of course Jeni. Andrea still eating very little and the weight is just falling off (if i ever thought she could lose more weight). Anti sickness drugs are really ramped up now on the driver with another booster by injection. Earlier she woke from a snooze and could hear voices from her past (family). She thought she had died and felt relieved. She was disappointed to find that it was just her imagination. It's a very emotional time. She really has had enough. I went to collect meds from the pharmacy (to save them having to deliver at 7 p.m.) and was told that the GP had enclosed a document that the family needs to read. It's basically a death management plan based on the Liverpool pathway. It outlines what could happen and what steps should be taken by the nurses etc. It states Andrea's wish that she should not be hospitalised.
I have just tucked her in upstairs and am about to go up. I am beginning to accept the inevitable. My darling has had enough and I must be prepared.
I am sending you all my love, kind thoughts and prayers.
Hugs,
Paul x

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: No bed available at hospital for gastric bypass!!!

Postby susikus » Fri Dec 21, 2012 11:01 pm

And hugs for you Paul, stay strong my friend, we are all with you in spirit. Love to Andrea, I am thinking of you both, with love, Sue,xxx

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: No bed available at hospital for gastric bypass!!!

Postby laura » Sat Dec 22, 2012 1:13 am

hello paul, so sorry that your lovely wife, andrea,is feeling so tired etc, isnt it sad that in 2012, we cant help our loved ones more?
my thoughts are with you both, i truly dont know how you are coping, so very well done
love and hugs laura xxxx

Morwenna
Posts: 50
Joined: Mon Dec 03, 2012 6:43 pm

Re: No bed available at hospital for gastric bypass!!!

Postby Morwenna » Sat Dec 22, 2012 5:09 pm

Dear Paul
I have been reading and following your posts and have to say that Andrea is so lucky to have you, you are both in my thoughts,
Sending you huge hugs
Morwenna xx