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Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Planning Chemo in Prep for Surgery

Postby Sueba » Sun Sep 08, 2013 5:25 pm

Hi Karen

So sorry to hear Bob still in hospital,and amazed to hear he still wants to be back at work soon,a true fighter!
Also I am in awe of you still working ,again a true fighter!

But now you need to take some time for yourself,I found it was important for me to keep myself well to cope with Micks chemo etc as well as the psychological side.But everyone is different,I have a friend whose husband has been diagnosed with terminal cancer and she has only dropped one day of work,she says she an be herself at work and gives her some routine.

We both have made some difficult decisions lately.....Mick is retiring officially at the end of October on grounds of ill health and I've resigned from my job too.Work have always been fantastic with me but we don't know what's round the corner(but who does?) so we want to enjoy our lives as much as possible whilst Mick is well(he had a clear scan result last week after a slight scare when his ca 19-9 went up slightly but appeared to be a blip as come back down)

Hope Bob improves enough to be discharged soon,look after yourself Karen,put those feet up with some chocs and a large glass of vino!!!

Sue
Xx

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Planning Chemo in Prep for Surgery

Postby Bee » Sun Sep 08, 2013 7:03 pm

Karen, I am not surprised you are exhausted, anyone would be and none of us are superhuman (shame!)
It is so difficult to juggle all the balls , and there is a balance between maintaining normality and cutting yourself some slack. It does sound like you need to put work in the background and look after YOU. I am sure if you put your professional head on you would advise yourself the same.
At least it sounds like the stent is working, small steps climb big mountains ! As you say Bob will need you at home when he is discharged ( well after he has been to work of course, lol!).
Take care,
Bee xx

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Planning Chemo in Prep for Surgery

Postby Cathy » Mon Sep 09, 2013 4:00 pm

Hi there all

Karen - I hope this week shows steady improvement in Bob. Good he is less "canary like" I also think you should do as you suggest and and book yourself some leave - just your travelling time alone is exhausing without the anxiety of Bob and fitting in a job. As Sue says - sometimes work can provide a routine (and in my case, normality) which can be helpful but we can't do everything. After all the last thing you need is for you to become exhausted and poorly.

Sue - Great news that Mick continues to be well and hopefully you will have lots of exciting times ahead with your new lives away from work.

Sarah - hope your Mum's doing ok? Glad you got the folfironox query resolved. Once treatment started I found making a diary of side effects when Jonathan started really helpful to act firstly as an aide memoire for seeng the Oncs and also to help us spot any patterns (e.g. feels fatigued generally X days after bottle removed). We got the district nurses to show us how to flush the picc line & remove the bottle ourselves so we had some independence from nurses outside of hospital which you might want to consider tho your Mum might struggle to flush her picc line on her own - really it takes another pair of hands.

Bee - great idea re virtual wine and chocs - all the comfort, none of the calories! A patent is needed I think!! I can see it on Dragons Den already.

xx

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Planning Chemo in Prep for Surgery

Postby Bee » Mon Sep 09, 2013 10:50 pm

Cathy,
I would not be a good advert for this patent, I think I have gained about a stone and a half since diagnosis, if I claimed "none of the calories" they would laugh me off the show, lol!!

Hope everyone has had a good start to the week!

Bee xx

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Planning Chemo in Prep for Surgery

Postby InfoForMum » Mon Sep 09, 2013 11:15 pm

Hi Ladies,

Hard day or two. Mum's in hospital with pancreatitis, blood clot in abdomen, swollen gall bladder and suspected infection linked to one or more of the above. Looks like fallout from rough biopsy rather than anything else. From A&E admission (6pm ish yesterday) to diagnosis took 10 hours despite me telling them what it most likely was, as first bloods lost. She's very, very sore mid left of abdomen (can't walk, breath, turn, or sit without horrid pain and aches in between) and nauseous whenever she tries to eat. Now on oramorph and has had metronizadole and Gentamicin antibiotics in a drip this PM. Confused advice about eating. Med student said nil by mouth, fluid drip, registrar said jugs of water and measure output, consultant said "drink as much as you can and eat something if you fancy it". She's treading a middle line as her blood sugar went v low. Eating stuff she knows she doesn't need creon for based on the theory that would stress her pancreas least. Who knows what's best.

No onc yet so no-one fully on-side here. Local consultant who we fell out with over London referal has helped out (did some uber creeping and ego stroking). One worry is they've never repeated the admission bloods and I'm scared they'll miss an impact of pancreatitis on organ function. Should I be worried. How long does pancreatitis take to resolve, should she be in oramorph level pain (bearing in mind I've only ever seen her take paracetamol for ANY kind of pain and that's once in a blue moon).

Karen, glad to have an update and sorry Bob is still suffering. Feel for you so much. Sounds like, in your heart of hearts, you know the answer to your question about work. Follow your instincts and give your self a chance to get things sorted, get out with me for a coffee? Sleep between visits until he comes home maybe?

Sue, hope your decision felt as right as it sounds once it was made. I tend to find that...bloody hard to make such a big decision, but when it's made you know. My mum joked when Dad retired that he'd better flipping keep himself busy cos she married him for better and worse, but not necessarily for breakfast, lunch and tea. Think this kind of situe puts a new perspective on that! Good luck with everything.

Love to all as always

Sarah

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Planning Chemo in Prep for Surgery

Postby Bee » Mon Sep 09, 2013 11:29 pm

Oh Sarah,
Your mum is having such a difficult time. I can't answer your questions but perhaps give the specialist nurses a ring in the morning.
Fingers crossed things settle down a bit overnight and you BOTH manage a bit of rest.

Bee xx

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Planning Chemo in Prep for Surgery

Postby LindaH » Tue Sep 10, 2013 10:21 am

Hi Sarah,

It sounds awful what your dear mum is going through at the moment, I really feel for you both.

I'm no expert, but Pancreatitis and how long it takes to resolve I think depends on whether it is acute or chronic. Acute seems to resolve after one week. It's thought acute pancreatitis occurs when a problem develops with some of the enzymes (chemicals) in the pancreas, which causes them to try to digest the organ. That is according to NHS Choices website ....http://www.nhs.uk/Conditions/Pancreatit ... ction.aspx

Maybe have a read about it on the NHS Choices website.

It probably doesn't feel like she's in the best place at the minute, but the hospital should help your mum and get her back onto the road to recovery soon, I really hope they do.
I can understand about her not wanting to take Creon, the last thing she needs is problems relating to that.

I wish you both well Sarah and sincerely hope all is well again soon. It is so awful this disease there are days when I could scream "Why me" and days when I just want to cry and cry.

My daughter goes back to University next weekend and whilst it's not too far away - York, it's far enough and I am going to miss her like crazy and it hurts, it's hurts so much especially when I don't know how long I have to live.....gosh, so sorry I'm getting a little morbid and tearful now...so sorry.

Hugs to you and your mum.

Linda x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Planning Chemo in Prep for Surgery

Postby Cathy » Tue Sep 10, 2013 11:13 am

Hi Sarah

I'm so sorry to hear your poor Mum is poorly. From your earlier posts it's clear that she is a very strong resiliant woman - a real trooper and so hopefully this setback is just that, a brief set back.

Linda has provided good advice in her post - I'm afraid I'm no expert but wanted to post something to you. I know that pancreatitis can be very painful so I wouldn't worry if she is needing oramorph at the moment. Great confusing advice you've been given there about food. Maybe do as Bee suggests (if you haven't already of course) and ring the support nurses here to see what they think.

Let us know how you get on today.

Lots of love to you and your Mum

Cathy xx

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Planning Chemo in Prep for Surgery

Postby InfoForMum » Tue Sep 10, 2013 11:48 pm

Linda, thank you so much for posting. With her not having been an inpatient since she was 15 she's a pretty bad patient. Or more precisely she's scared to death every pain or other symptom is a sign this thing has decided to finish her off early and she hates losing strength she needs for the fight ahead.

Far from feeling like you are being morbid, I think you are very strong to be so open. Probably because you know what I've discovered, that this is a safe place to share. I can only guess how hard it's going to be to say goodbye to your daughter. Feelings of desperately not wanting to impact her future fighting with needing her close? Mum's expressed similar stuff about me (I've turned down a job offer that would see me away from home more) and my sis (she's in Teesside 3 hours away just having started a new job). I hope leaning on the folks here provides a bit of an outlet. I'm sure everyone would back me up saying that, for whatever it's worth, you can scream at the world here about the bloody unfairness and terror without needing to feel bad!

Cathy, yeah it's great advice isn't it. Did have a chat to Jeni tonight and more vented than asked for advice, she naturally can't second guess treatment without direct involvement in the case, but I knew she'd flag any glaring ommissions in options being looked at or care, so it really helped.

Some signs she might be mending pain-wise since this afternoon (took my 4 & 7 year old in which is a pretty good test of all tolerance levels!). However, since this am vomiting bile every few hours perhaps due to carrying on eating, perhaps due to not eating enough, perhaps just generally due to pancreatitis. Maybe due to the antibiotics. The upside for the kids was they got to hoover up the bread roll, jelly and ice cream she couldn't face eating tonight. They whinged royally about leaving, which I think persuaded Mum how much they think of their grandma (not just her jelly and icecream...I think). Don't you love how well kids take illness in their stride. I'd explained what was going on in basic terms, told them about the drip etc and quick as a flash they were just into nosy, silly, winding up grandma mode, making conversation with anyone who'd listen. Not sure the staff approved but who cares. Hoping she has a better night tonight and may be updating tomorrow.

Regardless and always it's helping to get it out of my head here.

Take care all,

Sarah
X

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Planning Chemo in Prep for Surgery

Postby InfoForMum » Wed Sep 11, 2013 10:12 am

She woke up pain free!!!!!! So pleased. Suggests the antibiotics were needed (given it had gone on for 4 days before she was admitted and was getting worse with temp up and down by a degree or two). Probable discharge today although the nurses are stalking her with laxatives due to probs caused by codeine and oramorph. She's joked that she doesn't want to doze off in case they take her unawares.

I know she's feeling better cos she phoned with a list of things that need doing round the house! Got washing, ironing, grocery shopping and bed changing to do so far. She has a very good male friend (who everyone thinks she's having an affair with and she lets em now cos she's sick of putting them right), who's stayed at her house and looked after her dog. Don't know what we would have done without him. He stepped in to help out after Dad died and Mum worried what his wife thought at first, but she's always been great. Last order to him was "Get your arse over there and don't come home til she doesn't need you any more". Poor guy was kicked out without even a change of pants. After Dad died she never saw another romatic relationship in her future. To quote "why would I want to take on someone, probably older than me, probably with health problems and either train them to behave or have to look after them as well as me!". Kind of see her point. And this set up is great.

So, long winded as always, but wanted to share some good news. Just in time for 1st Oncology appointment friday and my sis coming down Sunday or Monday.

Grabbing the good days as advised by some very wise people here :D

Sarah
XX

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Planning Chemo in Prep for Surgery

Postby Cathy » Wed Sep 11, 2013 11:11 am

Hi Sarah

Fabulous news!!!! :)

Yes, both those pain killers can cause constipation - Jonathan used laculose - a syrupy thing that he quite liked and was quite gentle on his tummy as well.

She sounds an absolute character your Mum. How clever to have a ready made house trained man to help out. :)

I read your earlier post and empathise completely. I have often said that they don't provide you with a book on how to cope. But you do, you just muddle your way through and do the very best you can

I'd be quite interested to see your spreadsheet so will email if that's ok?

Cathy xx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Planning Chemo in Prep for Surgery

Postby Slewis7313 » Wed Sep 11, 2013 11:13 am

What a positive change Sarah! Really pleased for you both and others close to you.

Take care

Steve

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Planning Chemo in Prep for Surgery

Postby InfoForMum » Wed Sep 11, 2013 11:29 am

Thanks Guys!

More than happy to share Cathy. Fire something through.

In the interests of the deep sharing you've all encouraged. Mum is reportedly firing on all cylinders now (I took some cherries in last night and it's all she fancied eating, so take partial credit :-). So two victory dances in a month about bodily functions (the wee situation resolving post stent, and recent other issues). What a weird new reality we're living in!

And ref laculose, thanks for the steer. Unlike your hubby I have bad memories of taking it during pregnancy (prob due to downing a ton of it when 2 and a half weeks overdue in hopes of kicking something off!), but won't mention that to Mum.

Sarah
X

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Planning Chemo in Prep for Surgery

Postby Cathy » Wed Sep 11, 2013 11:57 am

Sarah - It is a very weird new reality.

For example, and also in the interests of deep sharing, Jonathan has had a little bit of constipation himself in the last 24 hrs (so I go into red alert monitoring mode and start fretting something is going wrong). However, on stepping out the shower earlier and finding him sitting on the loo - the.. err.. "atmoshphere" in there (and it definitely wasn't Glade) showed that that problem seemed to have rectified itself. And I was delighted! Now THAT's never happened before :lol:

Have I shared too much.... :)

xx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Planning Chemo in Prep for Surgery

Postby Slewis7313 » Wed Sep 11, 2013 12:39 pm

Cathy, if you ever go on a TV quiz show and they ask about passtimes/hobbies, I would not mention ths one. In reality however, we know only too well how important it is to those living in the Pancreatic Cancer world! Some people read/analyse tea leaves, others...............

Steve

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