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Posted: Mon Aug 22, 2016 1:30 pm
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?
Posted: Mon Aug 22, 2016 5:03 pm
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?
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Posted: Mon Aug 22, 2016 6:10 pm
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.
Posted: Mon Aug 22, 2016 6:51 pm
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
Posted: Mon Aug 22, 2016 8:16 pm
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.
Posted: Mon Aug 22, 2016 10:16 pm
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.
Posted: Tue Aug 23, 2016 11:46 am
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.
Posted: Tue Aug 23, 2016 3:33 pm
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
Posted: Tue Aug 23, 2016 4:22 pm
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.
Posted: Sun Aug 28, 2016 5:53 pm
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?
Posted: Fri Sep 02, 2016 3:13 pm
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
Posted: Fri Sep 02, 2016 7:48 pm
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!!!
Posted: Sat Sep 03, 2016 10:49 am
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
Posted: Sat Sep 03, 2016 1:00 pm
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.
Posted: Sun Sep 04, 2016 9:15 am
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!