No bed available at hospital for gastric bypass!!!

[yorkypaul]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Lulu]

Oh Paul, I know how hard this is. Hug Andrea close to you. Thinking of you both, Lulu xx

[PCUK Nurse Jeni]

Hi Paul,

So sorry to hear that Andrea is so unwell now. Please be assured you are in our thoughts.

It sounds like you are right in saying she has had enough. What a painful thing for you to watch. I hope there is plenty of support around you.

We will be about after today on 27th and 28th December, so do get in touch should you need to.

Take care,

Jeni.

[DRAD3]

My thoughts are with you and Andrea, Paul. Sending you love and strength and hoping that Andrea is at peace and pain free and that you have some more loving times to share still. You have both been amazing and your love for each other will help you both through what is to come. Will continue to think of you. Deb xx

[yorkypaul]

Hospital bed has been ordered for downstairs now. This morning the DN got the Dr to come as Andrea has substantial abdominal swelling. Spironolactone prescribed as it is obviously fluid build up. My lovely Andrea still managed to text me this morning to ask how I am!! I am going back up on Saturday afternoon. My 19 year old daughter (who loves Andrea to bits) has taken the weekend off work to come with me, but now seems to have got a bug - not sure if it's the winter vomit thing. So, I'll be going on my own. I won't go if there is a chance of me carrying the bug to Andrea though.

So, we carry on down this awful road that leads only to one destination. My heart is in pieces. Thinking of all my forum friends, all at different points along this same road. Stay as strong as you are able. Big hugs,

Paul

[Catherine]

Oh Paul, I have been reading yours and Andrea's story. My heart goes out to you and you have both been in my thoughts. I really hope you haven't got the dreaded bug and you get to spend the weekend with Andrea.

Catherine x

[yorkypaul]

I did get my weekend with Andrea. She is so very tired. The anti sickness meds have had to be increased and mixed in an attempt to stop the constant nausea. The bigger patches seem to be in control of the pain.We also have water tablets now to try to combat the abdominal swelling. I slept on the sofa as I did not want to be upstairs away from her. We were up hourly through the night. I am so glad I was able to be with her. Her son and daughter in law have now moved in to care for her. They are lovely.She has slept most of the day and so I have not had the chance to talk to her. Tonight she has eaten a little but has gone straight back to sleep. I am going back up on Friday night and will be staying until Monday evening. She is so very weak now.

I hope that Christmas passed without too much anguish for you all. I wish a peaceful, hopeful 2013 to you all. You are all in my thoughts.

Hugs,

Paul

[laura]

hi paul, have been looking out for a post from you, pleased that you were able to spend special time with andrea, also that she has family with her.

thinking of you both and wishing you much strength paul,

hug and a kiss , lauraxx

[Morwenna]

Hi Paul

I have been following your posts and what a rollercoaster you have been on. Isn't it hard hearing everyone talking about the year ahead and how great it's going to be...when for us its just full of uncertainty!! I don't want to think about about a whole year, a day at a time is quite enough. I hope Andrea isn't in too much pain, you are a wonderful husband to her, keep strong, thinking of you both

Morwenna x

[yorkypaul]

Thank you so much for your kind wishes. I am up with Andrea now. I came up a day earlier as she is deteriorating rapidly. She is asleep most of the time. For the brief periods she is awake, she is not always coherent - sometimes more than others. Tummy quite large with fluid and some swelling in feet and one leg. Not eating at all and only small amounts of water with a straw. Only woke once - at 5 a.m. Helped her to sofa for a 15 min sit, then back into bed. Have to support/lift for everything. Her poor son was up with her most o weds night, so at least he can get a little sleep now. My poor darling is but a shadow now. She said on Tues that she is not fighting any more. At least she seems pain free. She has been sick a couple of times - very tiny amounts very dark green. She is just treading the path now.

Thank you all for your support. My thoughts are with you all as we deal with this awful, cruel disease. Hugs,

Paul x

[DRAD3]

So sorry Paul. We are alongside you on that path and wishing Andrea peace and comfort. I know she will feel much loved by you and by her family and that is a blessing I am sure she appreciates and it will serve to help her on her journey. We are here for you, as always.

Deb

x

[louiepc]

Paul

I am so very sorry to hear how poorly Andrea is, it is so difficult seeing someone you love in such a desparate position. I remember reading to mum and chatting to her as much as could, had been told that even though she may be asleep she could still hear me.

Much love to you on this terrible journey.

louie xx

[Lulu]

Paul, there is nothing I can say or do to take the suffering away, I just wish I could - and I do know how helpless and how lost you will be feeling right now. Please know I am thinking of you all, Hugs, Lulu x

[laura]

paul, i am so sorry to read you are at a sad point in both your lives, my thoughts and love are with you both, sending you much strength and hugs, love laura xxx

[yorkypaul]

4th day without food. Minimal fluid intake too. Not in pain or nauseous at the moment. Will see how tonight goes.she tells me it is time to leave this place. Often incoherent. Got lorazepam if she gets agitated. I am here with her son and his wife. They are great. Hope she has a peaceful night.

Thinking of you all.

Hugs,

Paul

[susikus]

Oh Paul, I am so so sorry, it is so hard just to keep going. You and Andrea are constantly in my thoughts. I have had a bad day today, probably my worst since Pete died and I have cried a lot. Knowing you are facing the same journey makes it seem all the worse. I send you love and wish you strength.