No bed available at hospital for gastric bypass!!!

[yorkypaul]

Hi Laura, Rache and Deb

Got up there ( a bit late!) on Saturday and spent some time with my lady at the hospital. Still vomiting but much reduced. Went back on the Sunday as (despite still some vomiting) they agreed to discharge her! 70 minute drive to get her home during which she was sick (but we were prepared). Exhausted when we got home and tried to drink a little. Managed a VERY small ham sandwich (no crust) and a thinly sliced tomatoe - but was sick again a bit later. Absolutely awful night for us both. She just couldn't get comfortable - at one point best position to rest was kneeling with face into pillow in foetal like position.

Monday she was tired and weak. Visitors called and she appeared exhausted. I left in the evening as other family arrived to take over. I didn't want to come home. Worked today and was relieved to hear that she has NOT vomited today! Had some porridge and cups of tea!! Tonight had a small amount of casserole! WOW! Spoke very briefly this evening as she was even more wiped out than yesterday, which seems odd given the change in eating. Still no contact from either district nurse or Macmillan, which i thought would come via the GP referal? Suggested family get on to this today. Advised that next stage is visit to oncologist (told this on discharge from hospital on Sunday).

I'm a walking zombie, so heaven knows how she must feel!

Remembering you all in my thoughts and prayers every day. Gotta sleep.

Huggs,

Paul

[susikus]

So glad she's home, Paul. That in itself will help her to feel better. But exhausted to start with - I think that always happens, especially after surgery and sometimes people get really quite disheartened - but it is all part of the normal process of recovery after surgery (once upon along time ago I used to be a surgical ward sister!). My experience of the NHS, particularly in recent years is that you have to keep asking, don't assume anything. Be polite but be firm and ask, ask, ask. So I would be expecting a GP visit, a district nurse visit and a macmillan nurse visit. And don't forget all the money side of things. If none of those are organised yet then speak to GP surgery today and ask for them.

When will you hear about an oncology appointment? Again ring up and ask if you don't know. Different hospitals do things differently - and the staff in the same hospital don't always know their own processes - a number of times we've been slightly misinformed, eg the consultant told us last week the chemo would be on weds (her chemo day she called it) and then the nurse said this week 'oh no, that's her clinic day, the actual chemo day is a friday'. Is your fiancee taking anti-sickness pills? We have found regular pills, half-an-hour before meals and at bedtime to be the most helpful. With a pill that dissolves in the mouth if you feel sick in between times (which to be honest we've hardly used since starting the four times a day plan).

It must be hard for you to be so far away. Are you able to take any time off work? Hugs to you and hope today goes better. Keep us posted.

[DRAD3]

Hi Paul. So glad your fiancee is now home, I really hope this helps her in her recovery. It seems that she has improved already with the increased food intake - fingers crossed this continues. You must certainly be absolutely exhausted and I can remember that - I think I ran on pure adrenalin for a very long time. Sue is right about chasing everything. Never assume it is being sorted - check. My experience was the same as Sue mentioned with regards to consultants and nurses not necessarily singing from the same hymn sheet - we were often told one thing by the consultant and then corrected by the nurse (they run the chemo wards and what they say goes as far as clinic times, when blood results are needed etc) Again, Sue is right about the money side of things - your fiancee will be entitled to lots of help - the Macmillan nurse should be able to help there, but again, chase. Lots for you to do I'm afraid when you are already exhausted. I do hope you are able to take some time off, Paul. Do take care of yourself.

Much love

Deb

x

[yorkypaul]

Thanks Deb, Sue, Laura, Rachel for all your support. You are so right about chasing things up. Her lovely son has got Macmillan sorted for Friday (they knew about the case but hadn't been told of hospital discharge yet). I'm going to suggest ringing to chase the oncology appointment too. I don't want to leave it 2 weeks only to find that nothing has happened and then have another 2 week wait! Good advice folks! Thanks again. Regarding my work, I am self employed with very little in the way of financial back up. If I don't work, I don't earn, simple as that. It wouldn't take long (days) for me to fall behind with vital payments (like mortgage) or for there not to be enough in the bank to pay utility bills etc. The nature of my job means that I can start to lose custom if I let people down. That said, they have all been great so far. I am taking the little time off that I am able to fund at the best times. Collecting her from hospital at the weekend was one such time. I intend to take a few days off in 2 weeks when we are hoping to get married. I will continue to be there every saturday evening, returning late Sunday night.

Today there has been no sickness and she is beginning to eat more. However, there is now abdominal pain that was not present 24 hours ago. She has pain relief in tablet form , the side effest of which is drowsiness. She is very tired and very weak as you would expect. I can't wait to get back to her on Saturday evening.

I think about you all every day and hope and pray for us all.

Big huggs,

Paul

[susikus]

I do feel for you Paul, being so far away must be very hard for you. Your fiancee sounds as though she could do with better pain and sickness control. The postoperative scenario can't be forgotten but I'd bet money that the symptoms are coming from the disease - I have watched my husband doubled up in pain and he's not had any surgery - so talking to the GP/MacMillan team from a PC point of view would be helpful. What was most helpful to us was going on to MST (morphine sulphate tablets, slow release, taken twice a day at 12hourly intervals) and increasing the dose until he was pain free. The consultant said that was better than other forms of pain relief because they wax and wane - in other words pain relief goes up and down and what you want is constant pain relief, working all the time. Good luck. Any news on seeing the oncologist yet?

[DRAD3]

Hi Paul

Hadn't realised you were self employed - makes it kind of impossible - I feel for you and wish it could be easier. So glad all the chasing is working. My husband was also on MST at 12 hour intervals with liquid morphine for breakthrough pain (although he seldom needed this). The pain relief seems to vary from person to person and I'm not sure whether this depends on the care provider or the individual symptoms and needs of the patient, bearing in mind how different they can be (my husband had no sickness at all). Thinking of you and your lady and sending you both strength.

Deb

x

[yorkypaul]

So glad i was given advice to chase things up. The oncology department was contacted yesterday and knew nothing about her!! Many calls to people within the system (who were just passing the buck) and she was finally offered a place for mid November!!!!! After being told politely and firmly that this was not acceptable, a date was given for 11th October (2 hours after we get married!). If we hadn't pushed as you were telling me, who knows what would have happened. Nothing at all probably! Life saving advice. Many thanks. Will be on later. Got to rush ....work.

Huggs to you all and hoping the chemo goes well.

[susikus]

Thank goodness you asked Paul! And well done for perseverance, it isn't easy is it? And a wedding day appointment - well what a wonderful wedding present! How is your fiancee feeling in herself now? Do you have much to plan or do for the wedding?

[yorkypaul]

Hi folks. Had a pleasant saturday night/Sunday/half of Monday. Still sickness but slept well last night. Since I came home, she is being very sick again. It has changed though. It's not bile like after the op. It's vomit - mainly liquid. It was wonderful to be with her but, once again, I feel useless down here. At least I know her good friend is staying with her after having her sister and brother in law there for last week. It's like changing shifts!

Wedding plans are very simple. The hospital for the oncology appointment is just across the road from the registry office! However, I think we will have time to go home for a cuppa before we are due there after the marriage ceremony. She is just worried that she might be feeling too weak on the day. I wish she could keep down the food and build some strength back up. The antemetics don't seem to work all the time. There seems to be no pattern. Just when we thought it was volume of food/drink that was the issue, we now are not so sure. Hopefully we will have more information during the week. Hopefully GP will do a home visit tomorrow.

Thinking of you all.

Huggs

Paul

[susikus]

I hope she gets good help with the nausea and vomiting. It's the pits - makes you feel so lousy and there is so little anyone looking on can do to help. Is she on regular anti-emetics Paul? We have found that the most helpful thing - prevent rather than cure - so 4 times a day Pete takes 2 metochlopramide (maxalon) which is a good anti-emetic and helps the stomach to empty (the right way!), usually half-an-hour before meals and a bit before bedtime. We need extra for chemo time. Hope the GP is helpful but also talk to your MacMillan nurse - they are v v good at symptom control. Also is her pain well controlled because pain can make nausea worse.

Just nine days till your wedding... I hope you have a lovely day, we will all be thinking of you, and in our heads walking with you.

[DRAD3]

Hi Paul

Good to hear you had a nice weekend and your lady is being well care for by her team of loved ones - sounds like a well oiled machine! I do hope the GP can get her meds sorted so she can gain some strength and keep her food down. As Sue said, Macmillan nurse may be more helpful. Thinking of you as always.

Deb

x

[yorkypaul]

GP called out today for home visit (I'm still down here). It seems there has been a breakdown in communication between the hospital and the GP surgery - hence hte neglect over the past week. At least we contacted Macmillan directly last week. The GP has changed the antiemetic meds, has sorted daily district nurse visits (syringe driver in from tomorrow)and is ringing the surgeon for further advice. I can't believe that another week has been wasted with unnecessary suffering caused. Anyway, regardless of the cause of the delay, I feel happier that SOMETHING is being done at last. I hope she will be strong enough for the 11th, but who knows? I couldn't even phone her tonight as she was too tired to speak to me. Hopefully she will improve with the new meds and, anyway, I will be there in the flesh on Saturday evening!

I read all of your posts and feel so much for what you are going through. I wish I had the knowledge and experience to be able to give you all some worthwhile advice. All I would say is don't rely on the system. It doesn't always work the way you think or hope or assume it will. Check every stage. Chase everything up. At least then you have given it your best shot for your loved one. Being there for them goes without saying. So I didn't say it!

Sending you all my prayers and hopes,

Hugs, Paul xx

[susikus]

Keep going Paul, you're doing grand and your lady loves you and knows you love her. Good to hear the GP is on the ball now. I so hope that symptoms improve over the coming days so that you may both enjoy your wedding. Lots of love to you both, Sue.

[DRAD3]

Hi Paul

It shouldn't be this difficult should it? As if it isn't hard enough just dealing with PC, you have to chase, check and then check and chase again. I'm feeling pretty angry today for everyone and so powerless. You are doing amazingly well, Paul and so sorry to hear your lady was not up to a chat - that must be so difficult for you both - roll on the weekend again. I hope things improve and you get to enjoy some quality time together. Take care.

Deb

x

[yorkypaul]

Thanks for your thoughtful replies. It means so much to have this contact with people who really understand this stuff. The doc only gave her ONE tablet of the new atiemetic on the basis that the District nurse would give more when they came the next day (today). Of course, they did not have the medication!! This meant that her friend (who is staying with her) had to go to theGP surgery and DEMAND a prescription which she then had dispensed at the local chemists. She then drove back to the house and gave it to the district nurse who then administered the treatment!! What the hell is wrong with these "professionals"? Did the GP not realise that the nurses would NOT have the medication with them?

My love is now so weak and tired that I have, yet again, not been able to talk to her. She now WANTS to go back to hospital so they can give her the things she needs. I think the GP will have her admitted to the local community hospital so she can be on a saline drip and, hopefully, get rehydrated. Why do we have to push? Why does the system not work effectively?

Unless there is a BIG change in her strength and well being, I can not see our marriage taking place a week tomorrow. HOWEVER, I am going to stay positive and believe that she will be given the appropriate care and will bounce back. After that we can see the oncologist (which, if I am honest, should have happened weeks ago - even before the gastric bypass op).

Sory to rant folks. Just telling it as it is...and it shouldn't be like this for anyone.

Thinking of each and every one of you and your loved ones.

Hugs,

Paul

[susikus]

Oh Paul, hugs for you too. What an awful emotional rollercoaster you are on. I so hope that your fiancee gets some effective help today, even if that does mean being admitted. Do you have contact with a specialist nurse? She would be a good person to have on board and talking to the GP. I have come to realise that despite the fact that I have worked for 35 years for the NHS I cannot remember nursing someone with PC before and it isn't the same as having cancer anywhere else. I cannot remember anyone at our GP practice with the disease, and my own GP has 2, us and one other patient. What I am trying to say is that lots of nurses and doctors have little or no experience of the peculiarities and speciality of PC. They are trying to help, they want to help, but they don't always know how to help. That is why we have specialist nurses and doctors. Good luck today Paul, let us know what happens and I do so hope she feels better soon, lots of love, Sue

[luce873]

So sorry Paul for you and your fiance that the service is letting you down and you're having to do so much of the chasing and organising yourself, the last thing you need, how frustrating. It sounds like you are doing a fabulous job tho.

You've inspired me to continue to chase, nag and chivvy up every line of enquiry, it does make such a difference to the speed things get done, doesn't it? Keep plugging away, you are doing amazingly,

Lots of love and positive vibes coming your way,

Lucy x

[yorkypaul]

Thanks for your replies Deb, Sue and Lucy. The chasing up is being done by those who are up there really, not me. I'm just another voice while I'm down here. This afternoon she was taken by ambulance to the hospital where she had the gastric bypass op. The same fantastic surgeon will be looking after her. I guess priority will be to address the dehydration. The vomiting seems to have stopped today following the new meds given by the GP and administered by the district nurses. I am sooo relieved that she is going to get the care she needs once again.

Thinking of you all

Paul

[DRAD3]

Hi Paul

So glad your lady is in hospital and getting the care she wants, needs and deserves. Keeping everything crossed that she does, indeed, bounce back over the next week and you are able to have your wedding day go ahead as planned. That would be such a boost for you both, I am sure.

I cannot believe the awful situation you are having to endure and I think Sue is right that it is purely down to ignorance about PC. I am sure everyone wants to help but they don't know what to do - it is the system at fault and again comes back to raising awareness about PC at every level.

Keep your spirits up, Paul, and do hope you get to hear your lady's voice very soon.

love

Deb

x

[laura]

hi paul, you both certainley have not been having an easy ride, for your fiancee sake i am pleased she is in hospital, hope they sort things out quickly for her, you take care with all the driving your doing on top of working and worrying!!!

lets hope things really buck up soon for her and she can look forward, and plan, for your special day, you do know that it can still go ahead in hospital if neccassary?

my love and gentle cuddles to you both, laura xxx

[yorkypaul]

Not great news today. Scan shows a blockage in the stomach now. Did endoscopy as the procedure can sometimes open up a way through. Sad thing is, she actually feels a bit hungry now the drip is rehydrating her. Now they have put a feeding tube back up her nose again, just like after the gastric bypass op. It's strange how things were working properly again for 3 days after she got home, and now this blockage in her actual stomach ratjer than her duodenum. Dread to think what the heck it is. No feedback yet on the endoscopic procedure done late afternoon.. Hope to get more news tomorrow when I go up there. One step forward, 3 steps back.

[laura]

oh dear paul, so sorry you have yet another hurdle to both get over, when we are waiting for results, we always fear the worst, human nature i guess, truly hope you get a good visit this w/e im sure she will be so happy to see you, not much i can add, other than my thoughts are with you both, as they are with susikas, n jools , not forgetting debsx also wondering how rachels doing? have only posted once folks to you all, to save moving current topics out of sight? did prefer old system where could see all current postings easily, not just three. take care all of you, my love and good wishes to you all laura xxx

[susikus]

Oh Paul, good luck for today. I do hope you are able to find out more about what is going on and, more importantly, what can be done about it. Your lovely lady needs to be better for Friday. I will be thinking of you and sending you the most positive vibes I can today. You are doing a wonderful job on this horrible rollercoaster ride, stay strong and keep going, lots of love, Sue

[yorkypaul]

she was so very tired and weak when I arrived at the hospital today. She slept for the first 90 mins that i was there, but that mattered not a jot - just lovely to be with her!Just before i left, was advised that vitamins are to be given by iv just prior to the ng tube feeding. Surely that means they are though the blockage to the stomach? Tucked her in before i left. She was exhausted. cant wait to go back tomorrow afternoon. Hoping for an improvement tomorrow.

Thoughts and prayers with all of you and your loved ones.

Paul x

[susikus]

Were they able to tell you anything about the blockage Paul? Or their plans to deal with it? I hope you have a lovely visit today. Big hugs and lots of love, Sue