Planning Chemo in Prep for Surgery

[Bee]

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]

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/Pancreatitis/Pages/Introduction.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]

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]

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]

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

Sarah

XX

[Cathy]

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]

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

Take care

Steve

[InfoForMum]

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]

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

Have I shared too much....

xx

[Slewis7313]

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

X

[Cathy]

Trust me Steve, if I am ever invited onto a quiz show I will never mention this! Though I think I'd prefer to describe it more as an ongoing obsession as opposed to a hobby....

xx

[Slewis7313]

I have just had a real chuckle in the Doctor's waiting room. I picked up a copy of National Geographical, opened it randomly and saw the article heading "you can learn a lot about a species by what they leave behind"! Amsused me after our earlier conversation.

Steve

X

[Cathy]

LOL! I shudder to think!

Oh dear - I do hope Sarah doesn't mind the direction her thread is headed....!

xx

[InfoForMum]

Tee Hee.

Being a closet geek having worked in IT for mumble, mumble, mumble years I now have the sense of humour of a 14 year old boy (well not all the time, but it creeps out too often). So I find that sharing perfectly acceptable, but can't speak for others!

BTW. I've sent a version of my excel template to the support mailbox so anyone interested can get hold of it. Use, abuse, slice, dice or bin depending on what you think and need.

Mum's now due for discharge tomorrow after missing rounds with her consultant today. She was ffing and blinding enough to make me blush, possibly because of that and possibly because they left her on a fixed drip stand for the antibiotics last night and she ended up in tears cos they didn't answer the bell when she needed the loo. Had to damp down my instinct to murder someone for making her cry for the first time since this started. Then today, when she was far more robust, they did it again! I arrived in the midst of that and feel I may have not made too many friends!

They are brutally overworked, with horrid shifts, but these apparently "small" things, that take 2 seconds to rectify make the difference between someone feeling able, adult and in control of their situation vs someone feeling disabled, dehumanised and victimised. She almost started to give in and tow the line, be thankful for the things that went well, ignoring the things that didn't as it was apparent those who did got the thicker end of that thin wedge. This doesn't reflect the care overall, but I find it hard to overlook something so close to serious neglect that didn't need to happen.

Had to leave her with strict instructions not to deck anyone (mind you I'm glad she's feeling angry rather than helpless or humiliated now). At least not until she gets her meds from pharmacy and discharge notes.

Sarah

XX

[Cathy]

Hi Sarah

Well, good news that your Mum is clearly feeling a lot better, enough to fight her own corner it sounds like!

Hopefully her discharge will go smoohtly today (without the need to eff and jeff) and she'll get back home to recupperate.

xx

[nikkis]

Hi Sarah,

As a nurse myself I would advise you to seriously consider making a complaint if you are unhappy about your Mum's care. It really is the only way things can change, and if staffing levels are the issue, complaints from patients and relatives are the thing most likely to make management do something about it. You could ask to speak to the ward sister or charge nurse or if you prefer there is normally a PALS department who's job it is to investigate complaints. anything put in writing has to be investigated. Take it as high as you need to until you feel reassured.

Your Mum deserves good care, and any decent nurse will understand why you are unhappy. As you say it is just little things but they really add up.

Best wishes,

Nikki

[InfoForMum]

Thanks Cathy V V nice to have my mum back in full force, if slimmer. She's also now regained her appetitie.

Nikki, thanks for that prompting. It makes so much sense to do so, but there's the obvious trepidation about alienating staff we may have to rely on for future care. Will try and nudge her in that direction if she's got the energy for more than one fight.

Overall some other updates. Our local oncologist saw us for the first time today. He's lovely . Completely took on board that for us it's the more information the better and provided it. The scary part was a review of the CT taken while mum was in hospital. Shows a slightly enlarged lymph node (11mm) and some <5mm anomalies in her liver. He said there's no confirmation they're anything suspect and said lymph enlargement could be a result of the recent pancreatitis and likely infection and liver anomalies could be scars resulting from bile back up from biliary blockage, but going to do an MRI to know more.

It's not derailing starting FOLFIRINOX, although his left field news was that he didn't feel comfortable doing it for us as he has little experience with the regime, so he's referred us to a consultant at our local specialist centre for that (he'd already handed details of our case over and booked an appointment when we saw him!). With his frankness about everything else it was reassuring to have him admit his limitations. Overall enhanced the trust quickly established. Although our local specialist centre is a long way away, it is only twice a month and he has put his team on point to treat any serious symptoms or complications locally and is a high tech radiotherapy specialist, so the 5 times per week chemoradiotherapy part can be at our local hospital. He's also co-ordinating all doctors involved to make sure they all remain updated.

So slightly mixed bag there, but overall we are feeling very very fortunate and positive. Mum remains very proactive and confident about next steps and has to keep reassuring the professionals she's not in denial about the still relatively low chance of a "cure" even if the whipple can happen down the line. For her it's obvious she'll fight for the best chance, reserving the right to change that decision should the odds later stack against her. She converted their double garage into a rental property after Dad died. It was a project to help counteract the grief and achieve something positive for the future. She said she's treating this as very much the same thing. Very very proud of her and very pleased we have such a proactive and lovely oncologist now on board.

So Tuesday over to specialist centre with chemo likely to start end next week or start of following and MRI in about a week. She's expecting things to poleaxe her periodically (the stay in hospital brought her future dependence on others crashing in) and I'm poised to catch her after those inevitable emotional tsunamis, but generally we're in a very good place.

From Sunday onwards it's now about enjoying having my sis being around and preparing for the real fight.

Sarah

XX

Edited September 19, 2013 by InfoForMum

[Cathy]

Hi Sarah

Excellent news about your Mum being home and excellent news about the oncologist as well. He sounds super. It is so important to have someone you feel you can trust and someone gunning for you - I've read a few stories on here where that hasn't happened and it makes a world of difference.

Hopefully your Mum will continue to recuperate now she is home and can start Folfironox on schedule.

BTW - tried to email you today on your email address but it kept bouncing back for some reason. Will try again over the weekend if I can.

Cathy xx

[InfoForMum]

Thanks Cathy,

I've emailled support again to re-confirm my email addresses. Hopefully they'll pass that on and it will work.

I'm doing my emotional roller coaster thing again at the mo. The liver lesions are making me fret. I know...no point fretting til we know, but as usual I've been off researching and lesions plural doesn't look like a great sign. Damn..wine tonight maybe not such a good idea. Will shut up for fear of p*ss*ing everyone here off. Have mailed the oncologist for more info on likely outcome of MRI. Will prob get TTFO til there's more info, but always like to get one step ahead of any potential bad news so I'm back up off the floor before Mum gets there. Gotta remember that no matter what the MRI says, chemo is the next best step, so should go to sleep and turn my head off!!!

Pessimistic Optimism seems to be the best description of the approach - plan for the worst, jump for joy if I'm proved wrong.

S

[karen17]

Hi Sarah,

So pleased mum is home and also relieved you will be going to {name removed - moderator} as I was aware there is little knowledge of folfirinox at {name removed - moderator}. We ended up in {name removed - moderator} a couple of times ourselves when Bob became pyrexial and I would have to agree with you about the basic nursing care. Unfortunately I think this is a sign of our times because we have experienced this in all hospitals. {name removed - moderator} has been the only one where qualified nurses are happy to fill the water jug and perform the basic tasks but even there care is not as I would like purely because of lack of staff resources. In my opinion basic nursing skills went out of the window when it was decided all nurses should be educated to degree level. I won't get on my soapbox as we will be here all day just suffice to say that I also have a nursing background and have been appalled by the things I have seen.

Quick Bob update - still in {name removed - moderator}, still uncomfortable but things moving upwards following lots of complaints and phone calls from myself. He is now having joint care from the palliative care team who despite what I had been told where not aware he was sitting on the surgical unit. I have nothing but praise for the oncology and palliative team there plus the specialist nurses.

Would love to know who you are seeing Sarah but have heard positive reports of all consultants. You may be in for a long wait as they often get behind so take some reading material plus remember to book in at main desk with your parking ticket as you can pay the minimal rate. You may also find it will be a weekly visit as on the alternate weeks they like to take bloods to ensure ok for chemo the next week. That's a bit of a pain! You have my number so txt or call if you want a chat xxx

[InfoForMum]

Great tips Karen. Feels very real now.

Sorry to hear Bob is still in hospital, but that your tenacity and the oncology team have helped things get back on track. In terms of nursing care the whole thing scares me. Will have to stay vigilant and all over it obviously. Best wishes to you both!

Sarah

[Bee]

Hi Sarah,

Glad to hear your mum is feeling better and it sounds like you have clear plan which makes a massive difference!

Onwards and upwards!!

Bee xx

[Cathy]

Hi Sarah

Have resent email to you. I'm sure it was the right address as Jeni forwarded your email. I was trying to email from my work email address which kept saying it was undeliverable but seemed to go ok from home email address.

Hope all ok at your end this weekend and your Mum continues to improve

Cathy xx

[InfoForMum]

Hi Cathy, still no mail this end. Checked spam/junk mail folder (that's a spoonerism waiting to happen isnt' it :-S). Have asked support to send your mail address to me to try other way around.

Hope it works.

Sarah

[InfoForMum]

Thank you to everyone who has supported us on this thread. It's been invaluable. My war and peace updates have moved house to the patient experience forum. That in its self is a bit daunting. I hope that's appropriate given I'm posting on behalf of my Mum. Moderators, please do let me know.

The new link is here if you're not bored with my whittering on http://forum.pancreaticcancer.org.uk/viewtopic.php?f=28&t=1168