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So...we've just got back from holidays...I wish we'd not gone. Before we went my husband had had oral thrush and was feeling generally unwell from that...we thought he'd pick up once he'd finished the tablets, but he didn't. Throughout the 2 weeks, he gradually ate less and less and slept less and less. We got home yesterday and he was in so much discomfort in his stomach and back (following his whipples he's had a large abdominal hernia, we thought it might be something to do with that) that I took him to A&E. Turns out he's got a small amount of fluid around his abdomen.


Reading up on this, it seems to suggest disease progression to either the peritoneal cavity or the liver...his last scan at the beginning of July showed spread to the lungs, he has another scan in a couple of weeks time...I am now dreading the results of this.


We're waiting for the clinical nurse to get back to us with a plan, it's not enough that needs draining right now, but it will need monitoring.


Has anyone had any experience of this?

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PCUK Nurse Jeni

Hi Veema,


Sorry to hear about this news, and the fact that the holiday was stressful.


Are you able to ask the clinical nurse specialist to ask the consultant whether the scan date can be brought forward so they can see exactly what is going on? What did the A&E doctors do? Did they do an Ultrasound scan or an x-ray of the abdomen?


It may not be enough to drain, but it seems to be enough to cause discomfort to him - have they increased his medication at all, or altered his pain relief?


Do email us on support@pancreaticcancer.org.uk if you feel we can help at all.


Kind regards,


Jeni Jones


Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

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Thanks for your reply Jeni.


No, they didn't do an ultrasound or an xray, just had a feel and a tap and they could tell there was fluid there, but they could still feel normal tummy stuff through it, so said it was just a small amount.


The nurse specialist is going to talk to the oncologist today and ring us back tomorrow...Nige hasn't had any pain relief up until now as he's never had any pain or symptoms at all. He has some strong co-codomol from when he had his whipples and they just advised him to take that, which did help enormously last night as he was able to sleep comfortably most of the night and he's slept on and off all day today. He's also managed to eat a bit more. I think being at home will help too, so hopefully if we can get his energy levels back up, he may feel a bit better in himself. The hernia doesn't help as it's so big it gives him back ache...he has some corset type supports for that, but they won't repair it as it's just not worth it.

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Oh dear Veema,


What a dreadful tale. I see no reason why he has to put up with the hernia as it is clearly adding to his discomfort and I suggest you get your GP on board and push to have it resolved. Having the GP on your side and fully involved can help enormously especially with pain management.


I'm so glad that Nige has managed some sleep as that helps with so many other symptoms.


I will be thinking of you, not much help I know but maybe it will help to know that people do care about you and about Nige.


Wishing you a peaceful and pain free night xx

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Thank you Marmalade.


The problem with the hernia is its so big, it will be quite a big op to sort it...and that means no chemo for 6 weeks prior (which is a point at which we are at now), but no chemo for 6 weeks after too and I'm not sure if I'm comfortable with that...it's hard to know what to do for the best.

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Hi Veema,

I'm really sorry to hear of your husbands situation. I'm in a much more fortunate position in that my PC recurred locally but hadn't spread. I don't wish to give you false hope, but I can share my own experience with you.


I had my whipple in May 2015. In Nov I started to notice distension of my abdomen. This worsened over a few weeks. I believe I have an excellent team of specialists supporting me and I told my Oncologist that I was very concerned about the distension. He gave me a very thorough examination and broke the news to me that he was 80% sure it was ascites and delicately told me the likely prognosis. However, he insisted that he needed a CT scan to be 100% sure. I had it the following day and then followed what I can only describe as a week from hell whilst we awaited the results. When I saw him the following week he said that there was no ascites. A massive relief but shows how important it is to have the appropriate scans etc.


On closer review, the scan showed that I did have an incisional hernia. My consultant surgeon advised that I needed to recover from chemo before he could operate. Roll forward a few months to April this year and the distension had become very significant - small football up the jumper size. I also continue to have severe fatigue. I had another scan which showed a small local recurrence. So back on the chemo trail prior to having Nanoknife a couple of weeks ago. So fairly positive regarding the PC being addressed but I can't over state the impact from the hernia. It doesn't just affect you physically but psychologically too. Again I can't consider surgery until I've recovered sufficiently from chemo.


It is so difficult to deal with all of these complexities at the same time as the PC itself. I really hope that in your husbands case the ascites doesn't develop and he gets the most appropriate and effective pain relief as soon as possible. Remember you are not on your own. It does help to share your concerns and hear of others similar experience.

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Thanks Kevin...the hernia is like a football, it's awful and must be so uncomfortable.


He's had an up and down sort of night, but hasn't eaten anything much this morning. I've got scandishakes supplements and I'm about to make him have one of these, at least they contain all the right vitamins and minerals and have lots of calories too.


He cried last night which is so unlike him. He's been nothing but positive throughout the whole ghastly business, but this is really getting to him. I thought the nurse would have phoned by now...I will give it until midday and then ring them. I feel so damn useless...there's absolutely nothing I can do to make things better...the child is also getting upset because she can see he's not well, so I've that to deal with too.


Onwards by all means.

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Dea§r Veema,


Don't ever wait, you ring and push and hurry people as much as you like. They have lots of patients but you only have the one and you must only concern yourself with him for now.


I hope you have some help by now but again, contact the GP for some help with pain and also with his mood. This is a serious and life limiting disease and is difficult to bear even for someone as strong as Nige, it doesn't have to be like this and I am sure some temporary solution could be found for the hernia. Maybe they need encouragement to try harder… A very good doctor once told me that it's the thing that squeaks that gets the oil…


I am thinking of you xx

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The nurse rang just as I pressed the submit button!


We've been up to clinic and he's been examined. The consultant doesn't think there's much fluid there at all, it's all hernia. They've given him some additional anti sickness meds and he's to keep taking the co-codomol...they've also given him some laxatives for if he gets constipated from this. He's got his scan in 2 weeks, and another clinic apppointment the following week, where he's said they will definitely have the results of the scan. If the disease is stable, they may think about doing something with the hernia, if the disease has progressed there's little point. He's booking him a chemo slot for 2 weeks after the scan in case it is progressing.


We've finally been offered Macmillan support, so will await contact from them...I've heard both positive and negative stories of macmillan, so will wait and see what happens. He's also being referred back to the dietician as he's lost a stone in weight in just over a month.


I think it's all come as a bit of shock as he's been so well throughout the past 2 years, breezed through his whipples and the folforinox and he's one of those men who try to get by without taking any medication...aaarrhhh...just take the damn pills will you???!!!


I feel so sorry for him though...and sorry for myself...and sorry for our little girl, who's getting pushed from pillar to post at the minute whilst I try and get him sorted out...crap summer hols she's had. Luckily, I have a big family and she has lots of cousins to play with and they are all chipping in to help.


Thanks all for the replies...it's much appreciated.

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Little update.


Nige is no better really. He is sleeping better, but isn't making any other progress, it's hard to make him get out of bed at all and he's eating nothing of any nutritional value. I think he's got depressed. I'll be getting the GP to come and see him on Tuesday as I'm back at work on Thursday and I don't feel comfortable leaving him in the state he is in.


Has anyone any idea how long it takes for a Macmillan referral as we've heard nothing so far?

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Hello Veema,


I hope Nige is a little better and that you have the GP on your side and pushing for you. I think opt you a lot and hope that if ever you want someone to talk to you will ask the nurses for my email. M xx

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Thank you Marmalade...we've had the hospice nurse out today, who work in our community instead of macmillan...she was lovely and is sorting lots of things out for us, getting district nurses back in as we haven't seen them since the PICC line came out. She's also spoken to the GP as I had a massive row with one of the receptionists the other day who was just so rude and unhelpful and stuck to the 'by the book' rule of not being able to request a prescription over the phone...really, as if things aren't just bloody well hard enough!


Nige is a little bit better, but not much. I've been back at work this week and it's hard leaving him, but he's managed okay and he's a bit brighter (mentally), which is a big positive. We've got the dreaded scan next week - I hate scans, they are so stressful - we'll see what that brings.


On a positive...I had laser eye surgery last Friday and it's amazing...after 25 years of wearing glasses and contact lenses I can see!!!


Victoria x

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So good to hear about your eye surgery, just the sort of fillip you need. I'm glad you have someone on the ground on your case.


I tend to kill people with kindness and thanks when I need them on side. We shouldn't have to of course but it paid dividends for us and I can bite my tongue for the dividend. Don't worry about it though, Louis GP sand I had a full and frank exchange of views when he was diagnosed but she came through for us and is now a firm friend. It's your job to get the best and fastest response for your patient.


I have made a strong point with the local hospice, district nurses and CCG about access to drugs. Because many of them are controlled drugs prescriptions cannot be sent electronically to the pharmacy and many pharmacies don't have sufficient stocks. Louis GP was 6 miles away which meant that someone had to physically go to the surgery, pick up the prescription and take it to a pharmacy then wait. In the end we got the dreaded receptionists to fax the prescriptions through to the pharmacy so they could get it ready and then we would turn up with the official document to collect. It's a real problem.


Have you contacted Macmillan about financial support? A diagnosis of PC automatically entitles Nige to the maximum non-means tested attendance allowance. It may help if you want to scale back at work and you can also get help. Do ask your hospital specialist nurse or the GP if you haven't done so.


I am with you in spirit, and here if you need to vent or have a cyber hug M xx

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The nurse told us we could claim PIP and some other things...and she said she could get us a blue badge...lol...Nige will not have a blue badge!


Had a rough night last night, he just can't get comfy, so having a chilled day today.

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Hi Veema, Nige is certainly entitled to the upper lever of the PIP including mobility and if you call them they have to process it within 14 days I recall. If I was you I would try and get it back dated. I applied for this for my dad on diagnoses and he has now been receiving it since January. It is not means tested and anyone can get it if they have a terminal diagnose with expected 6 months to live and stage IV PC comes under that category.


Once you have the paper stating full mobility component then the Council will automatically accept your blue badge application. My dad has a blue badge now and it was so useful in his bad times.


I am sorry you had a rough night... is he in pain? Also, if you think he is depressed then perhaps some anti depressants would help?


I can imagine how hard it is juggling everything with your young girl as well. It is difficult to prioritise the kids around this dreadful illness. I know my 8 year old has suffered with a huge reduction in my time and my general happiness. Kids are very resilient though and cope amazingly well with these things.


We are extremely blessed in that mum and dad live in a village and my mum is the dispenser at the GP's own pharmacy. The maximum we have waited for anything is until the next morning and then it is always in stock waiting. I could not imagine the frustration of chasing medication in those time when you desperately need it. Perhaps you could have a word with the GP... surely there always has to be exceptions to these rules.


Anyway, I hope Nige had a better night last night and it is great that you can see again!


DG x

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Hi Victoria


I hope you and Nige managed to have a better night and that he's now more comfy. Well done on your eye op, I'd love to have the courage to do that but I'm too much of a woos!


As for the blue badge, absolutely go for one. Disabled bays are vital for those that need them and seeing my hubby struggle to walk in the last few weeks, his blue badge was a life saver. It was also a bit of a bonus when he was not so ill to be brutally honest! Nige is entitled to one and fingers crossed he won't justify the need for one for ages but you will have it, nevertheless.


Wishing you the very best of luck with scans this coming week, will be thinking of you.


(((((hugs)))))

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Thanks all.


He's not really progressing much, although he is making the effort to get up, showered and dressed and is still sat here now watching telly. Still not eating much, dietician should have been in touch today, so will be ringing our hospice nurse tomorrow to see if she can chase that up...he just can't take any volume of food or drink, so the scandishakes he has, although tasty and full of calories and vitamins etc., are too much for him to get in. To be honest, I think he needs admitting and getting some sort of nutrition inside him via whatever means. If he continues like this, he'll be in no fit state to either start chemo again if the disease has progressed, or be fit for an op if the disease is stable and they decide to sort out the hernia.


I'm a terrible carer too...patience is limited and I'm shattered. The daughter is going on a school trip to London tomorrow (we live in Lancashire) and she's setting off from school at 6.15! Think I'd better get to bed!


Victoria x

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Dearest Victoria,


One of the early lessons for me was when I was told to stop trying so hard. It was a real slap in the face but had to be said. I don't know how things are for you and Nige and what you have talked about but I was exhausting myself and Louis with my trying to cajole him into eating, drinking, keeping moving and doing some exercise etc.. all the things that would keep him going longer and keep him well. It was only when all that stopped and I took my lead from him that we could both get some rest and change gear.


If you were a rubbish carer you would not be on here fretting and worrying. You love him and want him to be well and get frustrated with waiting and watching him decline. Its absolutely normal in the circumstances. You have plenty to cope with without beating yourself up. You are doing a great job and the very best you can do. By the way, sometimes you need to tell yourself that you need to rest, exercise and eat well because you are worth looking after too! xx

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Marmalade, I hope you don't mind me asking but was it Louis who told you to stop trying so hard? I'd imagine that that is an extremely hard thing for a patient to tell their wife or husband, particularly if they have a young child. Much easier I would think if it's a doctor who plants the seed.

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His district nurse came out today...she couldn't believe the decline in him, she last came when he had the PICC line a couple of months back. She thinks it definitely looks like ascites to her and thinks it's unfair that they've not scanned him earlier...in hindsight I have to agree and I'm cross with myself for just going along with it.


Marmalade...he's not at that stage yet...he's still fighting the right, part of me wishes he would accept that he's not going to get better...I mean, he must know this, he must know that I know this...it makes it so hard.


Vx

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V, hindsight is a wonderful thing - don't beat yourself up. You have been brilliant. You are doing your utmost and more you can't do.


I'm afraid that if Nige accepts he's not going to get better, the end may come sooner rather than later. If thinking he's going to get better helps him, then go along with it. Just make sure you know his final wishes and that he gets his affairs in order if you possibly can. Although my hubby knew he was terminal, PC was never going to get the better of him and in the end he had me believing that too! Whatever gets you through this evil disease as best as possible - that's what you should be aiming for, as hard as it is for you my lovely, and I know just how hard that is.


Remember, we are all here for you. Stay strong

Love PW xx

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Veema,

My husband Trevor was just the same, he knew really he wasn't going to get better, but his way of coping was to believe he was, end of.

It wasn't until 10 days before he actually died, when the consultant told him, as he had specifically asked how long he had got, that he would accept it, but I still think he just didn't want to believe it was true.

He didn't want to discuss funerals or such, unlike some who want to arrange everything themselves, he just wanted to live. He did say he wasn't frightened of dying he just didn't want to leave me as he knew I would be lonely, we had been together 49 years and married for 46 years, and I am.

I just went along with him because like you I knew really he did know, but just let Nige deal with it in his own way, who can say which is the RIGHT way anyway.

I am sat here having a little cry about the memories of it all and I send you love and strength because I understand exactly how you are feeling, take care sandrax xx

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Dearest Victoria,


What a time you are both having, my heart is breaking just thinking about you. It's difficult to answer your questions, not because I don't know the answers but because I know full well how hard it is to cope with this ghastly disease and the trauma of knowing that it will claim it's victim if not in months, then in too few years. It's an abomination. There is a view that if you stop fighting the end comes sooner and this may be so but its not all about time. Quality of life, pain and suffering and the suffering of those around all come into it. More than anything it is about what the patient wants. What I will never accept is that facing a death without treatments is giving up or failure. I completely understand that for some, refusing to accept the prognosis is a coping mechanism and has been known to produce mini miracles. For others, especially the young, those months or years gained can bring such joy to their lives and those of their children that they are worth the fight. I lived in a house where my father was slowly dying throughout my childhood, I have mixed feelings but that's a different story.


It was my daughter who told me that I was making myself ill and my husband distressed by my constant attempts to keep him well. She is a doctor at a major teaching hospital but she is also a very loving daughter both to her father and to me. It was a vicious circle, I was trying to keep him going because it is the right thing to do and because I didn't want to see him die or be left alone. He was putting up with trying different food, drugs, activities and so on because he was afraid, not of death but of the process of dying, and because he didn't want to leave me on my own. I know this is familiar to many. Facing these issues brought us both peace.


The right thing to do is what Nige wants. If he wants to fight, then fight with all your might and I will be there praying for you and willing you on. If he is having treatment to prolong his life because of fear or because he sees not fighting as failing himself or you and the children, then those are the things that need to be resolved.


I hope I have not distressed you or anyone else. I have tried to answer you honestly but we all unique people and have different journeys and there is no 'one size fits all'. You are not failing him, you are doing your absolute best and you love him. The only thing I would urge is that you get the finances and work sorted so that you can have as much time with Nige and the children as you need and want.


Much love, M xx

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No change really over the past few days, so that's why I've not posted. I have read all your comments and they do help.


He goes through phases of being positive and upbeat to being so down in the dumps its scary. Had the scan last night, they were discussing it in the MDT meeting today...thought they might have phoned to say go and get it drained, but heard nothing...we've got oncology on Monday.


Hospice nurse is brilliant...she's sorted out the dietician, who came out to see him yesterday and she's got us loads of products coming...I've to buy some full fat milk powder, but can only find skimmed milk powder, so if anyone knows where I can get that, it would be much appreciated. District nurses came out today, he's got a small sore on his now non-existent bum...cream and dressings ordered. Pressure cushion has arrived today...it only took a week to get it! They want him to have a profiling bed, but he won't entertain the idea, but I think he'd be much more comfy in one rather than sitting up in bed.


Anyway...hoping for a peaceful weekend and I really need to rest, I'm shattered and becoming increasingly grumpy! Hope everyone else has a pleasant weekend.


Vx

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Hi bee a, your husband can have a blow up mattress topper for his bed which will help and is what we had for Louis. I have one and can send it if you want or make the district nurses get you one. Nurses have my email. Don't be disappointed if your man rejects the food products, they are pretty grim. I got milk protein from Holland and Barrett but Louis hated it so we just liquidised ordinary high calorie food. Much love darling xx

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