No bed available at hospital for gastric bypass!!!

[DRAD3]

Hi Paul - hope all OK today and that you were able to spend some precious time together. Do let us know how your lady is - we continue to keep everything crossed that there is some improvement. Thinking of you both.

Deb

x

[yorkypaul]

Hi everyone. I'm still up there - taken day off today.She was better yesterday than Saturday.NG tube for feeding. Drip for hydration and syringe driver for anti sickness meds. No sickness. No pain, but very weak. Have seen an improvement over the last 24 hours though.I'm about to set off to the hospital and will drive back home from there at about 8.30 tonight.Yesterday she had soup and a light pud at both lunch and tea time. That makes me think they must have cleared the blockage. She will speak to the surgeon today. Will need to be stronger if we are to have our day on Thursday!

Thinking of you all

Hugs,

Paul

[DRAD3]

Hi Paul - I hope things continued to improve today and you felt happy to travel home. What did the surgeon say? We are all praying that your lady is fit and strong enough for your special day - if it was down to sheer will from you both and everyone else it would be simple wouldn't it? lots of love to you both.

Deb

[susikus]

Oh Paul, I think about you every day. I do so hope that you are able to wed on Thursday. We will be with you in spirit. Love and hugs winging their way to you...

Sue

[yorkypaul]

Things were going great - no pain, no sickness and eating/drinking at last. Strength was building bit by bit. Then they removed the nasal feeding tube. Last night she was sick - 1 and a half litres. Looks like she is blocked again. Hopefully the doc will shed some light on this today. I am driving up at lunchtime in preparation for the big day tomorrow. I wonder if the tube was keeping the blockage to one side and, now tube is no longer there, the blockage has simply moved back across. I still don't know what the blockage actually was/is. Hope to find out more later today.

Thinking of all of you. 2 hours work today and then back up to the hospital. I'm reading your posts and thinking of you but am chasing about with little time. Will post later tonight I hope when the dust settles.

Hugs, Paul

[susikus]

Been in hospital most of today but have been thinking about you and hoping all is ok for tomorrow. We have had it explained to us that the pancreatic tumour is sitting behind the stomach thus occupying space that the stomach would normally be able to expand into, and it was squeezing the duodenum, that is why a stent was put in to hold it open. Your lady has had an operation - but I'm not sure exactly what they did to bypass whatever was there. Hope you're getting some answers today. Lots of love, Sue

[susikus]

Oh Paul, you have not been far from my thoughts all day today. I hope you are now a married man and I hope also that you have been able to have the meeting with the oncologist. I'm sure we should be letting you have your honeymoon but will be waiting with anticipation for your update. Lots of love and hugs, Sue, xxx

[DRAD3]

Thinking of you both today more than any other day and hoping everything went well. Love to you and your lovely lady.

Deb

x

[yorkypaul]

Hi Sue and Deb. WE DID IT!!!!! She looked fabulous. Her son had bought 6 dresses in different sizes to be sure that one would fit, and it did! Very moving ceremony. I did struggle to hold things together. Then on to the oncologist (will fill you in on details later), then back up to the hospital one hour away. We did get time for a glass of fizz at my wife's house with a couple of friends first. I think it did her good! Got back to the hospital to nurses singing "Here comes the bride" and to find her ward bed trimmed with balloons! As I left, they were hooking her back up to stuff again and she had been sick. I have to take the portable driver back to the health centre today. On my way to the hospital now as I know she will have seen the consultant surgeon this morning.

You are all in my thoughts.

Paul x

[susikus]

Congratulations! That is fab news, I am so pleased for you both. Hope the news from the oncologist and surgeon are good as well. Looking likely we are heading back into hospital today - just waiting for a call from the registrar. Good luck today Paul! Lots of love and hugs to you and your missus! xxx

[DRAD3]

Oh Paul - how WONDERFUL! Am absolutely elated for you - it sounds like it was a truly lovely day. Congratulations. Well done to the both of you for your sheer determination to not let this bloody disease get in the way of life and love. You are both an inspiration. I will raise my cup of tea to you both tonight (no bubbly on ice unfortunately!)

Sending you lots of love.

Deb

x

[laura]

paul, to you and your wife, i send so much love and as many good wishes that you can imagine, you both deserve a break from this obnoxious disease, and have time to love and grow with each other.

lots of love laura xxx

[yorkypaul]

Deb, Laura, Sue,

Thanks for your kind wishes. The oncologist says chemo is a yes provided the vomiting can be stopped to build up her strength. They are gouing to try a blend of antiemetic medication and, possibly, steroids to encourage the intestines to "squeeze" the food through her system - which it appears is not happening at the moment. The possibility is that the cancer has attacked the nerves that control this process.

I got home 11 p.m. last night. Just finished working today (needed to avoid letting same clients down yet again!) and am about to drive 125 miles back to the hospital up North. I have to say, they are brilliant. Must dash if I am to arrive before visiting ends (though they can be pretty flexible during the day).

Hugs to you all. Thinking of you. Hugs

Paul

[susikus]

I am glad to hear this Paul. You must be exhausted, what with work, all this driving and the emotions of getting married and seeing the oncologist. Make sure you drive carefully. I'll be sounding like your mother if I'm not careful!

[yorkypaul]

Ha ha thanks Sue! My mam was ace, so you can sound like her whenever you like!

Hugs,

Paul

[DRAD3]

Hi Paul - do hope the plan to get the food through works. I hadn't heard this before, how the digestive system nerves can be damaged. Another way the cancer tries to overpower. It amazes me how sneaky it be - I hate it so much.

Take care of yourself, Paul and love to Andrea (lovely to know your lady's name!) - hope you have managed to have some time together this weekend.

Deb

x

[yorkypaul]

Hi everyone. Got back monday night around midnight. Stayed at the hospital as she was getting severe abdominal and back pain. First meds no good so resorted to orimorph. She asked for a sleeping tab too. I left when she was settled. Long anxious drive back. Palliative care team have changed meds and for last couple of days pain has been a lot less and sickness non existent. Talk today was of changing meds to tablet form and, if all ok today could come home tomorrow. Tonight, however, she texts that she is in a lot of pain and is hoping that it will be sorted when the meds come round. Can't see them sending her home loke this. Rang the ward and got a very short "she is settled. Meds are going round now. CLICK" message. I know they are soo busy, but it has left me very unsettled. Maybe sometimes nurses should think about how they would like to be spoken to if their loved one was 130 miles away with a terminal illness and in a lot of pain? Sorry to rant. I know they are doing all they can. I doubt if they will let her out tomorrow now. I'm totally drained, physically and emotionally. Need to sleep. Luckily I have a later start tomorrow.

Thinking of you all. Going to have a read up on how things are with you. Saw the post about the American treatment. Wonder what the rest of you think?

Hugs,

Paul

[susikus]

Hugs for you too Paul. You are right - it is awful to see or hear your loved one in pain and you want to do something immediately. One day you might feed back how you felt when spoken to less that sensitively. I hope they can get Andrea's meds sorted - it takes a little trial and error but in this day and age none of us need to be in pain for long. What tablets is Andrea on? I would suggest that you try to be as aware as you can of what she is taking so that you are in a position to help if you need to. Pete is taking morphine sulphate tablets (MST) and these do work in taking the pain away as long as you get the dose right - we started on 30mg twice a day and are now up to 150mg twice a day - which I thought was a lot but my GP tells me that as well as the 10mg, 30mg and 60mg tabs that we already have it comes in 100mg and 200mg doses as well and that we can go a lot higher. The reason I say for you to be aware is that Pete gets muddled - he needs me to remind him what to take (I often just get the pills for him). This is a highly intelligent man, whose brain is befuddled by so many medications and the illness (partic jaundice) itself. Let us know how you're going

lots of love

Sue

xxx

[DRAD3]

Hi Paul. Gary was also on MST twice daily with oramorph for any breakthrough pain. If the oramorph is needed regularly, this would indicate upping the MST dosage. Gary found this system worked very well and his pain was well managed. I do hope you can find what works for Andrea. I did find it very frustrating whenever Gary had a hospital stay as I was in charge of all Gary's medication - for the same reason, Sue gave, he used to get confused and forgetful - no surprise, I needed a diary to log everything and tick off what I had given at any point in the day. When he was in hospital, I would often get there at visiting time to find that they had not given him the right medication at the appropriate time - so frustrating and upsetting because it often meant he had been in pain quite needlessly. I was a complete control freak and so wished that I was a nurse, doctor, surgeon so that I could do absolutely everything for him - that way I'd know it was done right! I feel your frustration and your exhaustion Paul and my heart goes out to you - but keep strong, you are doing amazingly well for your lovely wife. Love to you both.

Deb

[PCUK Nurse Dianne]

Hi Paul,

Have just caught up with the last few days or threads, may I say on behalf of all of us at Pancreatic Cancer UK, Congratulations to you and Andrea on your special day last week!

That was an absolutely amazing achievement amongst everything else you are coping with at present. Six wedding dresses must be a record!

Thinking of you both and don't forget to take care of yourself at this time.

Best wishes, Dianne

[yorkypaul]

Thank you so much for your best wishes and for your informative replies with regard to pain relief. She had a bad first night at home, waking with awful pain around midnight. Then, she was sick early morning. Macmillan nurse has been today and is monitoring her meds and is very anxious to get it all under control. I am back up there tomorrow mid afternoon. I spoke to her on the phone tonight and she was in pain. She was taking morphine in liquid form from a bottle?!!! Will be better informed when I get up there tomorrow. I have a friend who is a consultant (in a totally unrelated field, but is, of course a doctor of medicine and a clever guy) who tells me that there is absolutely NO NEED for her to be in any pain! I will be up there like a shot tomorrow. (I did say that I would go up tonight, but she would have none of it, saying she was exhausted and was going to try to sleep. I will be noting all the meds and posting when I can with details. Can't wait to be back with my lovely wife. Everyone that has seen the photos has said she looked absolutely stunning. Who would believe that this horrid illness is at work when she looked so lovely and, briefly, so happy?

I am so sorry that I have not been very supportive to you all, but since I have been back, it has been a case of work catch-up. I would love this merry-go-round to stop and let me get off for a while so I can focus on the important things. It does not mean that you are not in my thoughts. Every time I think of our situation (which is hundreds of times a day) I think of each and every one of you and what we are all going through. You are all in my thoughts and prayers.

Hugs,

Paul

[susikus]

Your friend is absolutely right - there is no need for Andrea to be in pain. The liquid morphine is oramorph. This is great at getting on top of existing pain quickly. Like other painkillers the effect is up and down (imagine taking paracetamol for a toothache - the pain is least 30-60mins after the last dose and builds up again before the next dose is due). But MST is a sustained release tablet - so the dose goes in slowly over 12 hours. Morphine will always work - if you get the dose right. A tip we were given is if on MST and needing extra give a dose that is equivalent to 4 hours of the sustained release tabs. If needing that extra every day then increase the MST rather than suffer the ups and downs. What we have also found is that nausea leads to pain. So for us more effective control of the nausea has stopped the pain meds need increasing as fast. Hope this helps Paul and you are able to help Andrea to feel a lot more comfortable. Have a lovely weekend together, love Sue xxx

[yorkypaul]

How can I thank Sue for the help and guidance she has given? How can I put myself in her place at this moment? Her loss is so painful to us all because she is such a strong character. Andrea is suffering pain and vomiting. The District nurse has been and has called the Doc as she was not prepered to allow her to suffer over the weekend.The upshot is a change of meds (yet again) and the probability of being back on the syringe driver on Monday if things have not improved. I am up there tomorrow afternoon. I hope I will see some improvement. I just need to be there.

Sue, if you are reading this, please know that you are in my thoughts. Pete had your total support and, in that respect, he was a lucky guy.

Hugs to you all.

Paul

[susikus]

And Andrea is a lucky woman to have you in her corner Paul. Thank you for your kind words, they are much appreciated. I am surrounded by family and friends and love, lots of messages, cards, flowers arriving and we are planning a wonderful funeral for an amazing man with music galore. I hope you have a lovely weekend and that Andrea is a lot more comfortable Paul, hugs and love to you, Sue xxx

[DRAD3]

Hi Paul - you keep strong! You are doing amazingly well and so glad that the district nurse is on top of things and fighting to keep Andrea comfortable. It is a hard road where things change in a second but you are both strong and the love you have for each other is obvious and will make you even stronger. You give your lady the biggest hug when you see her and put another big one around the both of you from your forum family. xxxx Deb