No bed available at hospital for gastric bypass!!!

Hi. My lovely fiance is currently on a gastro ward in hospital after dehydrating due to constant vomiting. Antiemetic meds slowed it down at home but not enough. She was diagnosed with PC with secondary to the liver 2 weeks ago.One of the tumours is blocking the duodenum. Her gastro consultant is trying to get a gastric bypass op done before she starves to death. He wants to build up her strength so that the oncologist can have the option of administering chemo. There is no sign of a bed being available at the moment for the op (she needs to be transferred from the current hospital). She has been on this ward for 5 days. They introduced a NG tube 2 days ago to suck the stuff from her stomach. This allowed her at least to get some sleep. The tube has become dislodged. There has been no attempt to reinstate it. She is vomitting again. She is getting weaker and weaker and is losing the will to fight. Tonight the consultant has agreed to ring round other specialist surgical units around the country to see if the procedure can be done elsewhere. I wouldn't let my dog suffer like this. I live 2 hours away from her (and the hospital) and I will be going back up tomorrow afternoon to find out what is going on.

Oh Yorkypaul, how awful for her and for you. I empathise. My husband was diagnosed three weeks ago - PC and liver secondary which has been biopsied. He has been progressively less and less able to eat - we are managing now with fluids only, anti-emetics and trying to keep him at home until Thursday when he goes in for gastroscopy and stent insertion under GA on Friday. Is stenting not an option for your fiancee? And couldn't another NG tube be passed? I do hope you get some answers tomorrow - do come back and tell us how it went.

yorkypaul, on the face of it, it would appear to be totally unacceptable , the way your fiancee is being [ or not !!] treated, i would be inclined to ask to see the specialist who is looking after her and ask him/her what would he want to happen, if it was their husband/wife laying there, with no apparent help being given,?

you need to stand your ground ,be adamant but not aggressive, you could also ask where PALS is situated in the hospital and go and see them, they will certainly help you and your fiancee.

i do hope you get some more satisfactory results immediately. chin up, love laura xx

Hi Yorkypaul,

My Dad has had this operation done approx 2 months ago. He was diagnosed 1yr ago with inoperable PC with mets to his liver. He too was vomiting, each day getting longer and more constant until he could stick it no more. He was admitted to hospital then. They put a tube down his nose into his stomach (not sure what its called) to drain out what was there, it gave him instant relief, although he soon got very irritated with it. His had come out too but they did put it back in again. It took about a week and half for a decision to be made that he could have this bypass rather than having a bag attached to him 24/7. When he was moved to another hospital for the bypass to be carried out he took an infection, but thankfully the op was able to proceed soon after.

We did not get him home for 6wks from he first went in, it was a long haul for us too and i can understand your frustration! I really do hope they can sort out your Fiance as soon as.

If you have any questions about the op feel free to ask and i can give you an answer based my dads experience.

Hope things pick up, takecare.. Rachel

Hello Yorkypaul,

Sorry to hear of your fiance's diagnosis and that this is such a difficult and frustrating time for you. It is great that some of the 'forum family' have shared their experiences with you and I am sure you will find this supportive. Please don't hesitate to call us or email the support line if we may be able to explain things further and answer any questions you may have. (support@pancreaticcancer.org.uk - 020 35357099).

Dianne

Thank you all so much for your prompt replies. It does make you feel better to talk with others who understand the situation. My mum's partner was lost to this wicked disease just 8 years ago. I lost my dad to stomach cancer when he was just 32 and i was a child of 3.

Anyway a quick update. Totally full of cold so was unable to go to the hospital as I felt this was just asking for trouble (obviously still went to work though). Since then, she has been moved to a nearby hospital where the bypass will be done. She has her own room and met the surgeon and his team soon after arriving. She has been assigned a nurse and nothing is too much trouble! What a difference! she sounds much more confident and a little stronger. The NG tube is back in too so she should get some sleep. Op is scheduled for tomorrow. Fingers crossed!

I am so pleased to hear this Yorkypaul. I hope the op goes well and you get to visit soon. We are now chasing a bed at our hospital as my husband has started to vomit back fluids, awaiting a phone call any minute...

Dear Susikus I hope you get that call very soon that a bed is available. You are in my thoughts at this difficult time. I was talking to my fiance 30 minutes ago when they came to take her down for the op. So glad that it's happening, but anxious times still.

Keep pestering for that bed - it's the only thing that seems to work - polite but firm pressure.

Once again, thanks so much to you all for your replies and advice.

Dear yorkypaul

So sorry to hear about your fiancee's diagnosis. It is absolutely devastating I know. I hope that the op has gone ahead and went well. Let us know how she is and hope you are managing to rid yourself of the dreaded cold - it becomes such a responsibility to keep well when we are caring for our loved ones in such awful circumstances! Sending love and strength and know we are thinking of you.

Love

Deb

Thanks so much Deb. Op went well and surgeon is pleased with how well she is doing post op (only back on ward at 3.00 today). Can't believe that she was able to talk to me (by phone) tonight.On morphine, antiemetics, anticoagulants but very coherent and positive. Became very tired and speach began to be slurred after a while so was obviously very tired. Seems to have the fight back in her, but is very aware that this op was just the first step. Need to build up strenth for chemo (if an option) to slow things down and give us more time. Apparently one of the identified secondary liver tumours is 5cm x 4cm. I don't know if this is significant or not.

I will be up there at the weekend. Other close family have been there today. I hate being so powerless and so far away.

This site makes me realise that we are not alone in our fear, anxiety and despair. Thank you all for your support and advice. It means a great deal to me.

Oh, I am so pleased to hear she's had the op. I hope you're feeling better too and will be able to see her this weekend. Is it possible for you to take any time off Yorkypaul? Do you know yet when she will see oncology re chemotherapy? We now have an appointment for Tuesday so I will let you know what they say. We have not been told anything about size or extent of tumour/secondaries or biopsy result and are hoping to get this info next week. The original consultant who gave us the diagnosis (who is a general consultant now but used to work in a specialist liver/pancreas unit until a year ago) told us his prognosis would be 'weeks to months' so my work have given me compassionate leave. Might your work do that too? Good luck Yorkypaul. I hope this weekend goes as well as it can for you. Hugs {{{}}}

Hi yorkypaul

So glad to hear op went well and you fiancee was up to a chat on the phone - what a star she is!! I understand your feeling of powerlessness and how frustrating it can be, but there is always something that can be done, even it is just your supportive and loving words over the phone to let her know she is not alone and that she is loved. The weekend is now here so I hope you are able to spend some time together, you must be desperate to see her. I hope you can get some more info with regards to what next and what you're up against. Do contact the PCUK support line for some expert advice, won't you? Keep us posted and glad to know that you feel you are not alone - we are as powerless as you but we are a cushion you can fall back on when you need it.

love and strength

Deb

x

Hi yorkpaul, I so glad your fiancée had her op and stopped the horrendous sickness, it's awful to watch and its one of the symptoms that we can relate to, I know there have been times when I have been sick that I wanted to die, and I think to myself, times that by 10 and more and you have some idea of what our loved ones are going through. Take care and use this site, it has been a great support for me.

Thanks once again for your caring replies. I went up there on Saturday evening and was able to spend 90 minutes with her.She was still occasionally trying to vomit despite the NG tube. She was very weak and very low.

During the night, the NG tube was removed as it appeared to have "k8inked" in her throat. I arrived on Sunday and she was back to vomiting again. We are talking a litre of stuff in one go. It was the colour that you would see if you dredged a garden pond. Late afternoon, a fresh, wider NG tube was put in. However this drains into a 300ml bag! It was full in 30 minutes and so the inevitable happened - yep vomit again. We seem to be on top of this now. She empties the bag herself rather than buzz a nurse. The nurses, I have to say, are fantastic.

I had a weak moment yesterday when I helped her into the bedside chair as she could not get comfortable. She told me she had had enough and just wanted to die. I'm sorry to say that i just wept. I told her that people feel like crap after surgery (she's never had anything wrong in her life, so nothing for her to compare this with!) and that she will feel bad for a few days. After that, let's look at the options.

Surgeon came again today and she told him how she had been feeling. He promised her that she will feel better soon. She is being prescribed all kinds of stuff over the next 24 hours to try to get things moving down and working again.

I have my appointment at the registry office on Wednesday.The date is set for 11th October in her area registry office. I wonder if it will happen. I hope so.

Rang her tonight and she had to say that she was exhausted and needed to sleep. Wish the sickness would stop.

Oh Yorkypaul, it feels awful doesn't it? I do so hope the wedding goes ahead on 11th October - that's 3weeks and 3days away - I am counting the days because it is our wedding anniversary (27yrs) on 12th October and I am also hoping we 'get there'. Despite the stent, which seemed to go well, my husband is back to vomiting. We see the oncologist today. I think of you every day and send you lots of love and hugs

Sue

Thank you so much for your kind words Sue. I am thinking of you and your dear hubby too as we all go through this. I so hope that the oncologist is able to give you something positive today. The vomiting is distressing and exhausting. My fiancee is still being sick despite the NG tube being back in.However, she said that today she felt ever so slightly better than yesterday. I find myself desperately clinging to anything that has even a small element of positiveness about it.

Do post how you get on with the oncologist today. There will be a lot of people hoping and praying for you.

Sending you positive and hopeful wishes,

Paul

Hi Paul - so glad to hear your fiancee felt a little better today. A small step but in the right direction and here's hoping the surgeon is right and this feeling better will continue. Keep being positive and don't worry about the tears, it does not mean that you are being negative, it just shows how upset you are and rightly so - that goes for your fiancee too - she will have her dark moments - who wouldn't? You are both doing wonderfully. lots of love

Deb

I am so glad to hear that your fiancee is feeling a little better. I completely agree that vomiting is the pits, both for the vomiter and the stander-by. There is just nothing you can do to help. You'll see I've posted about our visit to the oncologist on another thread. She was helpful about the nausea/vomiting too - told us to take metochlopramide four times a day at least 30mins before trying to eat and have buccastem which dissolves in contact with the mouth's membranes if nausea strikes in between. Your fiancee is in a different situation recovering from surgery but the principle of regular anti-emetics will apply I think. Let us know Yorkypaul, I think of you and your fiancee every day. Good luck for today (and every day).

Once again, many thanks for your kind wishes. You are all in my thoughts too. There now seems to be some progress with recovery after the bypass op. Normal bodily functions are returning at last. She has to try to eat now (tube accidently pulled out yesterday by herself in shower!!) without the feeding tube. Has not vomitted since last night but frequently feels as if she is about to. The histology report has 100% confirmed the PC diagnosis. I guess that deep down I was hoping for some kind of miracle, but, on the other hand, I also knew it was not to be. Funny how the mind works.

All being well, she will be discharged on Monday and I will take her home. I am able to take a few days off work. Her sister will be travelling up to look after her when I have to come back down here.

Having read lots of posts, I am aware that the journey ahead will be a difficult and traumatic one.

Sending love prayers and best wishes to you all. Will be watching your updates on your own situations.

Paul

Hi Paul

Good news that your fiancee is recovering well and So lovely to hear that she will be able to come home - that will speed her recovery even more. Sorry to hear about the definite PC diagnosis - I understand what you mean when you say that you were hopeful that it might not be the case. It is a nightmare I know - and I can remember feeling like someone would suddenly tell us it had all been a terrible mistake, that files had been mixed up or something. Ever hopeful of waking up to find it was just an awful dream. You are obviously prepared mentally for what is ahead. I hope you have good support around you, practically and emotionally. Take good care of yourself Paul - eat well and rest as much as you can. Love and strength to you and your fiancee. We are always here for you.

Deb

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Surgeon is pleased with progress so far and indicated that she might be able to come home tomorrow. Since then, she has been sick twice. Just been weighed and told be how much she weighs now. I guessed 9 stones. It's 8 stones 5lbs. That's 3 and a half lost since this started, almost 1 and a half in just over 2 weeks. Desperate for her to be able to keep some food down and gain strength. Hope they wont discharge her if the vomitting is still happening. She so wants to go home. Let's see what the rest of today brings.

It certainly is a case of seeing what each day brings isn't it, Paul? I hope things have improved since your last post and that your fiancee will be strong enough to go home. Keeping fingers crossed for you both.

Deb

x

Hi Paul,

Good news that the surgeon thinks the operation is a success!

My dad found that his stomach was alot more delicate after his op. He found that stomach liners really helped his stomach to feel more settled not sure if your fiancee is on these but may be worth asking about. My dad has lost 2 stone in 10 weeks, every morning he wreches but does not vomit. We found he was losing weight to poor appetite and then having diarrhea which im sure has lead to his weakness now. Finally the hospice seems to be helping in sorting him out. They have said even after 10wks it is still early days after the op! So I guess its just baby steps for both our loved ones.

I do hope your fiancee's vomiting eases for her and she gets home soon and you both get to enjoy your day on the 11th..stay positive!

Takecare Rachel x

Thanks Deb and Rachel. Have been hopping onto sitre whenever I can, but life is so mental I don't always get time to post. Rest assured that you are in my thoughts as I follow your posts. I have cancelled my work today and am about to set off on the 2 and a half hour drive to the hospital. Spoke earlier and she was very tired and weak. Stii unable to eat. I will be amazed if they discharge her when she is not taking in food or fluids! I will be staying in her house tonight so I can visit tomorrow at the hospital again. It will feel very strange without her there. I hope I am up to it mentally.Must dash as I have a fair old drive if I am to be at the hospital around 1:00 as promised.

Thinking of you all. Stay strong. Stay positive Huggs,

Paul x

evenin yorkypaul, well you are having to run around aren't you?, pleased to hear your fiancee is recovering slowly, this disease and its associated problems, gives us all a trying time, all so differant to one another, with differing results, am sure if your lovely lady can eat etc, feel sure she will make better progress at home.

just to let you know that am thinking of you and hope that things will soon improve for you both.

with love laura x