My darling mum

[luce873]

Hi all,

I've been reading everyone's posts and although every one makes me sob, it's so comforting that others are going through similar experiences to our family.

My wonderfully brave and beautiful mum was diagnosed with advanced PC on the 17th August. Since 'Black Friday', mum has stoically battled on, putting a brave face on everything but unfortunately getting weaker and weaker by the day. She has a stent fitted to get rid of the jaundice and was (eventually) seen by the oncologist. The decision was make to try chemo, just a low dose of gemcitabine as she was too weak for anything more potent to see if this would make her more comfortable and give her a bit longer - without it the oncologist reckoned 'a few months'. The aim was for the chemo to start this weds. Unfortunately, since sat Friday things have taken a nose dive - constant diarrhoea, terrible pain, unable to eat, barely drinking, v weak and ascites developing. I called the nurse specialist today and mums being admitted tomorrow to have the fluid drained off. We don't now know if she'll be strong enough for chemo.

What's other peoples experiences of their loved ones having ascites? I gather it's a pretty bad sign and a clear indication that things are getting a lot worse? Have others been strong enough for chemo after having all this fluid drained off? I'm just so scared that they're going to say that there's no point in even giving it a try. We not ready to say goodbye yet and give up so soon......

Sorry for rambling on but if anyone has any advice or experiences they could share that would be great,

Thank you

[yorkypaul]

Hi Luce. My heart goes out to you having just read your post. I can not offer the information you require, but I am sure somebody else, with more knowledge and experience than I have, will post soon. I just wanted to extend a hand to reassure you in some small way that you are not alone in this struggle.It does help to communicate with others who are in a similar situation, both to gain knowledge and to share experience to become aware of what lies ahead. Sometimes it's good just to have an outlet for the range of emotions you feel as you go along this road. (It's what I am doing right now having, yet again, been unable to sleep properly.)

Huggs,

Paul

[susikus]

Luce, like Paul, my heart goes out to you. I am so sorry to hear about your mum. I agree with your assessment of 17th August being black friday - that was the day my husband had a normal gastroscopy (having been diagnosed with a gastric ulcer) and I knew from that moment that it was pancreatic cancer, had to wait another 4 days for official confirmation from the CT scan.

We have no personal experience of ascites (yet). All the other symptoms that you describe can be caused by ascites or made worse by ascites though. Is your mum on lots of medication - painkillers, anti-nausea drugs, creon? - if so then they may need to be altered to take the ascites into account. I hope that she gets the help she needs quickly. My understanding (far from expert!) is that you can have chemo with ascites. Your mum needs some really good symptom control - MacMillan nurses are really good at that - does your mum have one you can talk to?

Hugs {{{Luce}}} We're walking with you. Please let us know what happens. And don't forget you can also talk to the wonderful PCUK nurses on the helpline number. I found that very helpful - good to talk to someone who really understands pancreatic cancer, not just cancer, because it really is a 'special case'

Lots of love to you and your mum, and look after yourself

Sue

[luce873]

Dear Sue and Paul,

Thank you so much for your prompt and kind replies. Yes, she is on creon, some pain meds (but this needs reviewing as what she's on at the mo isn't enough), anti diarrhoea meds and sleeping pills. Just waiting for a call from the ward about what time she's got to go in for the drain - I'm hoping when she's there they can sort our some really good pain relief so she can eat something - she's had nothing for 3 days now. There's a big Macmillan centre at our hospital so hopefully we can get some input from the nurses when we go in today.. You feel so helpless. I'm forever ringing people chasing referrals, prescriptions, appointments etc which does seem to speed things up a bit - mum then gets ratty that we're doing things behind her back. I know it's just because she feels so completely out of control with this horrible disease.

So pleased you fiancé is home and eating a bit Paul. I'll be thinking of you on your wedding day. I understand how hard it is being so far away - I live 150 miles away from mum. I hope your looking after yourself and not run ragged with all the travelling and working as well.

Sue, I'm so pleased your husband has been able to start his chemo, fingers crossed mum will also be able to join the chemo club soon! I hope you enjoyed your dog walk - mums spaniel is her constant companion, patiently waiting by the window whenever she goes out. Mum is also enjoying Downton on catch up during the afternoons, she keeps quoting Mrs Hughes..."I'm not in a box yet!"

Sending love to you both and your loved ones. I'll keep you updated on how the drain goes (sounds horrendous!) but people say it gives you instant relief,

Thank again for getting back to me,

Lucy x

[susikus]

Ooooh, Lucy, I love your mum! Can I ask how old she is? So sorry that you live so far away. Does she live on her own? I think everyone needs someone in their corner, fighting, agitating on their behalf. None of us would stick up for ourselves as much as we would for someone we love, and that is what is needed with our health system. It can be wonderful but it needs us all to be vigilant, asking questions, reminding health professionals of what has been promised. Do you have a dad Lucy, or brothers and sisters? Who would be your mum's main fighter, fighting her corner? Could you agree this with her. I try very hard to get Pete to feel like he is in control but to be honest he relinquishes it at the drop of a hat, with a 'Sue knows more about this than I do'

Good luck today Lucy, let us know how it goes

lots of love to you and your mum

Sue

[DRAD3]

Hi Luce

So very sorry to hear about your mum. It is heartbreaking to hear and I hope we can offer you some comfort and support even it we cannot take away this awful situation. I cannot offer you any specific advice and am loathe to as you will have no doubt gathered that PC effects everyone in different ways. My husband did not have any ascites until the very end but my friend's mum had it well before and had it drained off several times with much relief. I do hope the drain will offer your mum some relief and that things will become clearer with regards to whether they want to continue with chemo. Keeping everything crossed for you and hoping that your mum is made more comfortable very soon. Know that you are not alone and we are always here offering an understanding ear. Lots of love.

Deb

x

[laura]

hi luce, sorry neither can i offer any help/ advice re ascites, no experience ourselves, if the ward is unable to help sort out pain control, and they may not, your best bet is macmillan, you should have one allocated to you i think, well thats how it is here.

do hope there is some improvement after today for your mum, thinking of you, love laura x

[luce873]

Hi everyone,

Thank you all for your kind words, such a comfort.

Just a quick update.....

So the docs don't think mums swelling is due to ascites, which is good. Unfortunately, they've found the cancer has spread to her peritonium (abdo lining) which is probably causing the pain, swelling and digestive probs. they've started her on steroids and are trying MST and ora morph for the pain. She not eating and we're waiting for a dietitian to se her too. She continues to loose weight and is getting weaker and weaker..... What experience do people have of steroids? Lots of horrid side effects?

Sue, mum is 66. She lives with my dad and I've got a younger brother. She is also v close to her sister who only lives 20 mins away so she does have lots of support. I've tended to be the 1 who has done most of the chasing and fighting her corner. She has re christened me her 'little terrier'!!! You need to chase tho, it makes such a difference. We are trying to learn to be patient but it's so hard and regular prompts/phone calls/nagging to the professionals really does speed things up.

Fingers crossed that she's a bit better today, must be positive,

Love and best wishes to you all and your loved ones, that's for the support,

Love Lucy xx

[PCUK Nurse Jeni]

Hi Luce,

Glad to hear that your mum has had some things put in place to help her to feel better. With regard to steroids, in my experience, these tend to have a very positive effect on people who have PC. They have several good effects, including helping with nausea, increasing the appetite by making the person feel hungry, helping with pain and swelling and increasing the energy levels generally. They do, of course, have some side effects, but usually these come after being on them for longer periods of time, and also from being on much larger doses. Used in the short term, or in short courses on and off, they should do more good than harm.

They can cause problems sleeping if taken too late in the day, so make sure they are taken before 3pm, and also, that they are taken on a full stomach, even if it is something small like a banana. Otherwise, they might irritate the stomach lining.

But, these drugs are used widely in oncology, and usually have very positive results and you can see a visible improvement in the person.

Hope this helps?

Jeni.

[luce873]

Hi everyone,

It's been ages since I posted something about my mum on here although I log in most days to catch up with how everyone else is getting along. It's unbelievable how many have lost their fight in the short time that I have been a member on this site but I've found it so comforting reading your ever so familiar experiences.

So a brief update about my darling mum... She's been in and out of hospital, lost tons of weight, put on tons of weight with ascites and swollen legs, had chemo, stopped chemo then started again, is taking so much medication she rattles, can barely walk, has a wheelchair, is battling cellulitis, constipation and the list goes on and on. Her spirit and courage is unwavering though and although she now doesn't want anymore chemo and wants things to take their natural course, she manages to stay so upbeat and positive.

The most recent addition is a pleurx drain. This will be permanent and means we can drain her ascites at home so she doesn't have to keep going back into hospital to have it done. She was only discharged yesterday after having it fitted and district nurse is coming tomorrow to do 1st home drainage session..... Does anyone else have any experience of pleurx drains? It's weeping fluid from the drain site quite a lot, is this normal? Are they easy to live with and use? Questions, questions! Any info would be really helpful.

Right, enough moaning, need to be up early to get last minute bits for Christmas sorted (puts on brave face),

All the best to you all, make lots of happy memories over Christmas,

Much love

Lucy x

[laura]

hi luce, gd to see you back on line, gosh your mum is a little terrier herself by the sounds of it, its obviously worked for her, and must of helped you, whilst you were tearing round sorting out all "the chiefs"!!!! to see that she was battling with you, and gave you the strength to keep fighting her corner.

well my dear, your mum has made a decision about what she wants for herself, so difficult for all concerned cos we all think, please keep going.

i wish you continued strength in this fight, and for your dear mum i wish a painfree, peaceful time with you all over the coming days.

love and hugs winging their way to you, laura xxxx

[DRAD3]

Hi Lucy

So sorry - can't help with your question - perhaps someone else can or someone from the support team?

Just wanted to send my love to you and hope you have a good Christmas and your mum's amazing spirit continues - she sounds wonderful!

Deb

xx

[PCUK Nurse Dianne]

Hallo Lucy,

Sorry that your mum is having such a difficult time of things, especially at this time of the year. I will email you re information on the pleural drain.

Kind regards,

Dianne

Support team.