No bed available at hospital for gastric bypass!!!

[yorkypaul]

Got to hospital in time for evening visiting. She was totally exhausted, sitting in the chair and had to get back into bed and slept for an hour. Was a little more lively when she woke, but I was only there another 15 minutes - which I think was enough for her. (I am happy just to sit there while she rests though). Then, around midnight, she texted that she had just been very sick (one and a half litres!!!). I was gutted for her. I have spoken to her today and she is quite cheerful. I am very worried that she has got the begining of a bit of a "pot" tummy. I hope this is not the start of ascites fluid to the abdomen which, I believe< is the early signs of liver failing to function properly. I am thinking this because she has put on quite a few pounds again quite quickly too.

At least I am here for the whole week. Going back to the hospital now - it's only 30 minutes drive this time.

Thinking of you all. Hugs,

Paul

[Lulu]

Paul, stay strong, what a fantastic husband you are you are truly caring. Be proud of how you are coping with all of this you are amazing. Huge hugs xx

[DRAD3]

Thinking of you and Andrea, Paul and so glad you are able to spend some time together. You are both amazing - keep strong.

Deb

xxx

[yorkypaul]

Thanks guys. The hospital seem to have got the sickness under control at last (I hope it lasts). They are sending her back home today complete with the portable syringe driver that belongs to the community nurses that she went in with. She was very tired and so very low in mood yesterday. It may have been because her blood pressure was very low in the morning. Just spoke on the phone and she is sooo excited about coming home again. This time meds will be via the driver and a "butterfly" on her tum that takes the place of injections. Tablets were a waste of time before - she just brought them back up.

Back to the oncologist on the 29th if she is strong enough. She was eating properly at the hospital so I hope we can build up some strength. Just waiting for the next knock. I will not put my guard down for a moment. This disease is very sly in the way it packs another punch when you are not ready for it.

Can't wait for the call to go and bring her home!

Thinking of you all,

Hugs, Paul x

[susikus]

Oh I am so glad she is coming home! Lets hope all the symptoms can be kept in check for a long time - you are so right about the sneaky behaviour of this horrid disease! Keep your guard up but enjoy every good moment you can.

Lots of love and bug, big hugs

Sue

xxx

[Sueba]

Paul

So glad to hear your wife is coming home and you can enjoy some quality time together!

Hugs

Sue b

Xx

[Lulu]

Paul, over the moon to hear your wife is able to come home and fantastic news that the sickness seems to be under control at last. Long may that continue. Remember how well you are doing holding it all together, a lot of men could not handle this the way you are doing, you are an inspiration. I'm very proud of you my cyber friend - well done, and always know we are here for you whenever you need us x

[yorkypaul]

Thanks everyone for your good wishes. 2nd day at home now. Pain and sickness still under control but she is so very, very weak. Needs help with getting up and down, out of bath etc etc. Mood is up and down. Feels a bit "odd" today like when blood pressure was too low at one point in hospital. Sleeping on sofa a lot. Very frail. At least the pain and sickness have gone for now at least.

Thinking of you all,

Paul x

[DRAD3]

Thinking of you both, Paul and so happy to hear pain and sickness under control at the moment. Hope you are enjoying your precious days together and being in one place, rather than dashing about being in two places at once. Take care of yourself as well as your beloved Andrea.

Deb

xxx

[laura]

hi paul, just to let you know you are both in my thoughts and hopes. i so admire you in the way you are coping, [ well, outwardly anyway] my love to andrea and you, love lauraxxx

[yorkypaul]

A bumpy ride this week. On Friday, Andrea was sick in the morning - first time in 6 days. I should have smelt a rat. In the afternoon she was in real pain (scale of 1 to ten? I asked. 7 she replied.) DN's asked GP to write up meds for the weekend - stronger doses of morphione etc. Request was left on doctors computer keypad so she couldn't miss it. She ignored it! DN had to call at surgery later in the afternoon and INSIST that the GP dealt with the meds immediately. It was done. The prescription was dropped at the pharmacy by the DN's on the way to us. I was told to collect in 30 mins. ASndrea was given morphine (orally) to help the pain. Nurses went to next client and were coming back in 30 minutes. I was to nip to the pharmacy. I didn't. I wouldn't leave her as the pain was still intense. DN's arrived back 40 mins later and I was just about to give more morphine (as instructed). DN's did it and waited with her while I went to pharmacy. GP had messed up the prescription!! Pharmacist realised the importance of the meds and got me to ring DN's who told him what the meds (morphine) read on the sheet. He did the meds according to the sheet. Sorted. Incompetent, uncaring GP!

Not a great weekend. Very frequent bowel movements. Eating a bit though. I came home last night - daughter in law in place. Bad night. Little sleep, still needing the loo to poo very often. Rang GP to sort the liquid steroids. Hit a barrier. GP prescribes tablets!! Ask to speak to GP or practice manager - refused by receptionist! Calling GP out for home visit in the morning. Out of hours tonight if required.

She is so tired of this and feels that they do not want to help her. II want her to get the Macmillan nurse involved tomorrow (she was off today). I am at a loss to understand how they can treat anyone like this!

[laura]

hi paul, so upsetting for you and andrea, and sorry that things are a bit difficult at the moment, could you, perhaps, make an app for you to see the doctor yourself and have a frank talk with him/her? and explain how frustrating it is for you both, particularly with receptionist REFUSING ? to do something for you, does she really have that sortof power???

perhaps macmillan nurses can be your sole contact re meds etc?

thinking of you both, and paul it is not possible to judge in advance what is going to happen, so dont beat yourself up my love, carry on what your doing so well, caring for and loving your dear wife. love and strength coming your way, laura xxxx

[Sammy-Lou]

Oh Paul, I have popped in on yours and Andrea's story from time to time and I'm so sorry to hear of your latest struggle, so difficult for you to go through, it seems ridiculous to have to fight to make sure someone isn't in pain doesn't it! You are coping amazingly and I am pleased you are able to be at home together, let's hope you get somewhere with Macmillian so all these things can be managed so you have as long as possible at home together.

I don't have any advice for you but am sending love and best wishes to you both, will be thinking of you.

Sam xx

[yorkypaul]

I am lost for words. The GP surgery is unbelieveable. A stool sample was requested following a GP visit (not the regular GP, she seems to do everything she can now to avoid any contact). It was suggested that there might be an infection causing the frequent bowel movements. A sample was taken to the surgery, correctly labelled as required. Today we are told by the surgery that they have no record of ever having received it!!! They have checked with the hospital labs (just in case) and they, too have no record of it! The GP will also not prescribe Creon without the stool sample.The surgery is implying that we have not taken the sample in to them in the first place!! My daughter in law had to make a special trip to the surgery to take it in! Of course they have received it - they have simply lost it.

In the midst of all this suffering and despair, we don't need this kind of treatment. A complaint has been logged with PALS. There are other similar complaints that can be read on the PALS site about this GP practice.

[yorkypaul]

Today they have found the sample at the surgery!! It will now be next week when we get the results. Palliative care consultant awaiting results to determine if we will go ahead with Creon. Yet another delay. At least there is some movement now though.

Can't wait to be up there again tomorrow. Feel so let down by the GP. Thank heavens for the DN's and Macmillan nurses. So sorry to be doom and gloom on the site when so many of us are hoping for a beacon of light.

My hopes and prayers are with you all.

Hugs,

Paul x

[Sones]

Hi Paul I have been following your posts and my heart goes out to you and Andrea. Like yourselves I have not had good experiences from GP's, it took them more than two years and a complaint letter before they agreed for me to have a scan. However, I'm sure there are lots of people out there who have excellent GP's, were just unfortunate that's it's not us.

You have been so strong and Andrea seems to be going through so much, why can't they give her Creon?

Do take care of yourself Paul, you must be exhausted with travelling and worrying about Andrea.

Best wishes to you both.

Sue.x

[PCUK Nurse Jeni]

Hi Paul,

Sorry to hear about this confusion you and Andrea are going through.

I am going to email you directly regarding creon, etc...

Kind regards,

Jeni.

[yorkypaul]

Thanks Jeni. That would be great.GP doesn't even seem to know what Creon is!

[yorkypaul]

After getting some really useful information via Jeni on the PCUK support team, I was able to press the GP for Creon for Andrea. Hopefully we should collect it today from the pharmacy. The GP appeared to have no knowledge about the need for the use of enzymes and, even after reading (hopefully) the link I was sent, was reluctant to prescribe the Creon, saying she didn't see the benefit! I wonder if she actually read the link.

[susikus]

Until Pete was ill and I read this forum I had never heard of creon. I am not surprised that GPs don't know about it. They should listen and learn though...

Hugs Paul.

love

Sue

xxx

[Lulu]

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]

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

[luce873]

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]

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

http://www.pancreaticcancer.org.uk/information-and-support/diet-living-with-pancreatic-cancer/living-with-pancreatic-cancer-faqs/what-is-creon

[PCUK Nurse Jeni]

Hi Paul,

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

Jeni.