A forum for family, friends and carers of pancreatic cancer patients

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Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Feeling totally lost

Postby Didge » Tue Apr 12, 2016 9:18 am

Just a quick reply as on bus to work. Draining fluid is not bad experience and will probably make your mum much more comfortable xx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Feeling totally lost

Postby Proud Wife » Tue Apr 12, 2016 4:01 pm

Hi Shelda

Good for you! You are still a winner in everyone's eyes. If you want to post a link, I will happily add a little to your fund raising.

I am so sorry that your mum has taken a turn for the worse. My hubby is nowhere near as bad as your dear mum but his disease is progressing too so I understand how hard it must be on you. It's great your parents have the support of you and your brother and I think its a brilliant idea that one of you stays over. As you say, there is always that slight chance meds might not be taken correctly. Your dad is probably panicking seeing your mum so poorly as well as coping with his disability, it's not fair is it?

I am thinking of you and if you want to have a quiet "chat" over email or whatever, you only have to ask the moderators to pass on your details. I'd like to offer whatever support I can to you xx

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Feeling totally lost

Postby shelda » Wed Apr 13, 2016 10:56 pm

Well things are not great and I feel I can't bury my head in the sand anymore in hopes this would all go away. I went back to my Dr yesterday as I lay awake all night knowing this fluid isn't a good sign and it's time I got signed off work to be with mum!!! I said to my Dr is it ascites and are we looking at weeks as apposed to months and she said after examining mum on Monday yes she's very weak and it's probably a few weeks. I am so scared and just want time to stop, I don't think my mum or dad realise how little time we may have and I don't have the heart to tell my dad what the Dr said yesterday, I have told my brother as its too much for me to keep to myself. I've been there most the day tidying and sorting her meds and also meeting Louise her Macmillan nurse, mum is suffering anxiety and said how scared she is as she's not ready to go, I've barely stopped crying since I got home as its the first time my brave wonderful mum has admitted she is frightened and there isn't anything I can do. This is all so hard I want more time it's not enough, but I don't want her to suffer either.
Thanks PW I'll probably take you up on that offer xx

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Feeling totally lost

Postby boa » Thu Apr 14, 2016 7:47 am

Shelda just a word of support and I know this will be a difficult time. My experience is to take each day as it comes and try not to worry. Sending warm thoughts to you. Catherine

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Feeling totally lost

Postby sandraW » Thu Apr 14, 2016 11:51 am

Shelda,
Your feelings are understandable, its all so scary, you think you can't cope but you can, these things come as such a shock, but then you absorb them and you will find you can move forward, the strength just comes from somewhere.
I also understand how you feel about not wanting your mum to suffer, but of course you don't want to loose her either its something we have all been through, and it is so hard, but you just have to go with the flow and try to make the best of the time you have left with her.
Your poor mum I am sorry to hear she feels worried and anxious, but perhaps you could have a word with the doctors and see if they can sort out some medication to help with these feelings.
Its good that you can get the time away from work to be there for your mum and dad, and hopefully when Mum's fluid is drained, she will feel much brighter. Sending you a big cyber ((hug)) love sandrax xx Well done on your fundraising too xx

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Feeling totally lost

Postby Linda G » Thu Apr 14, 2016 3:57 pm

Hi Shelda, this is such a difficult time for you all. I agree with Catherine that the only way is one day at a time. Try not to think too far ahead and enjoy as much time with your mum as you can. My husband also expressed fear and anxiety and our MacMillan nurse spent some time alone with him enabling him speak about how he felt. He was reluctant to talk to me in this way as he knew it would upset me. There is medication that can help with anxiety, although Stewart declined it. As Sandra says you will find strength you did not know you had. Crying is very exhausting isn't it, but it's also a release valve. Don't try and keep it in. My thoughts are with you and your family.
XXXXX
Linda G

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Feeling totally lost

Postby shelda » Wed Apr 20, 2016 4:26 pm

Thank you for all the good advice I'm kind of switched onto auto pilot now and taking things day by day, mum had an awful weekend it was so upsetting to see this once vibrant, bubbly lady unable to open her eyes properly, coordinate herself to drink and to be rambling incoherently. She had a blood transfusion on Sunday then 3.5 litres of fluid drained on Monday and she is more awake and there is less rambling, but she's still not great bless her. We've had my sons 10th birthday on Monday and it's my daughters 2nd birthday on Friday and she always said when she was diagnosed she'd have to see these milestones and true to her word she has.
I've added the link for my just giving page PW as asked hope that's okay with admin...up-to £800 for this amazing charity, that's £100 for every week I trained for my boxing match, I'm so pleased xx

Hello

Donating to my JustGiving page is easy - just follow this link and click Donate:

http://www.justgiving.com/owner-email/p ... -Griffiths

JustGiving sends your donation straight to Pancreatic Cancer UK so it’s a quick and safe way to donate.

PCUK Nurse Jeni
Posts: 1111
Joined: Mon Jun 14, 2010 1:30 pm

Re: Feeling totally lost

Postby PCUK Nurse Jeni » Wed Apr 20, 2016 5:14 pm

Hi Shelda,

Thanks for posting an update about your mum - its good to hear that things are slightly improved anyhow - suspect there was some electrolyte imbalance, which seems to have been corrected, and she is feeling better.

Thank you for posting your link - and for your generosity.

Kind regards,

Jeni,

PC specialist Nurse,
Support Team.

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Feeling totally lost

Postby Proud Wife » Wed Apr 20, 2016 8:27 pm

Sponsored! Always happy to support a fellow forum member who's more active than me for such a worthy cause.

So, so sorry Shelda to note that your mum has not be doing so well. I can only imagine how distressing it must be. Milestones are really really important so once your little one's had her birthday on Friday, I hope another one is set. Belated happy birthday to your son xx

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Feeling totally lost

Postby shelda » Mon Apr 25, 2016 1:11 am

And the rollercoaster continues, mum had a good couple of days following the draining of the fluid, a little trip to her favourite fish and chippy, she managed a couple of mouthfuls, but then by Friday she was feeling like the fluid was back and then yesterday she threw up pretty much all day and was very confused and unsteady again today....it's so so unfair seeing her like this (as you are all sadly aware) my dad has started to actually open up this past couple of weeks about mums illness which he'd refused to do and I'm glad he is finding a release now I'm worse if I bottle it up so goodness knows how he's managed this past 10 months. I'd really hoped mum would be here to see me turn 40 this year but I'm not hopeful, we'd planned to have a family getaway for a weekend of bbqs and a girly afternoon tea, I'm finding I'm getting upset about all the things we'll never do again....I really want to tell mum all the things I'll miss and that I'll always love her but don't want to cry and upset her, but I want her to know how lucky I feel to have her as my mum plus I want her to know this whilst she's pretty lucid...life is so damned unfair xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Feeling totally lost

Postby Dandygal76 » Mon Apr 25, 2016 10:15 am

I have donated to you as well my lovely with my contact details if you want to talk. Just love and support each other... that is all you can do. The reactions and coping of everyone involved is so complex and so different, don't beat yourself up over any part of it. Your mum already knows how lucky you feel to have her as a mum. I promise you. x

PCUK Nurse Jeni
Posts: 1111
Joined: Mon Jun 14, 2010 1:30 pm

Re: Feeling totally lost

Postby PCUK Nurse Jeni » Mon Apr 25, 2016 3:16 pm

Hi Shelda,

So sorry to hear about this turn again, and that your mum has had a bad day with vomiting.

Shelda - you mention she had fluid drained recently - did they do any blood tests for electrolytes? (I am sure they did), which would show if there is any signs of dehydration there? If she is vomiting, then there is a risk of dehydration - and especially as you mention confusion - this is a classic sign of electrolyte imbalance within the body - often, it can be corrected by correct hydration, and also, if there is a specific electrolyte which is low or high, things can be done for this.

Its difficult when a person is having large amounts of fluid taken off to keep that balance in the right proportions, and this might be whats happened. Maybe she could have a quick check up? Just to say also, sometimes, a person can end up vomiting if they have a blockage in the bowel (obstruction) - has this ever been mentioned?

I hope that you can find some answers to solve the vomiting, as its really distressing and draining for your mum.

Do contact us if you have further questions.

kind regards,

Jeni.

Pancreatic Cancer Nurse Specialist,
Support Team.

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Feeling totally lost

Postby shelda » Wed Apr 27, 2016 1:43 am

:-( just when you start to pick yourself up, you are knocked right back down!!! I've just got home after being in a and e since 8.30 Monday night, took 5 hours to see a doctor but once he started things moved quickly. She'd begun to throw up dark green liquid in small amounts but by 6pm there was roughly a litre!!! Mum was in alot of pain too and very distressed!!! It took till 6am this morning to settle her and get her comfortable....after ecgs, vitamins, fluids, antibiotics and god knows what else she had a couple of scans which show the cancer has metastasised to her liver and her kidneys are in failure as a family we took the decision in discussion with Dr, do not resuscitate as the high levels of potassium put her in danger of heart attack and no invasive treatment of the kidneys as the only way to help is dialysis and that's just not fair when she's suffered enough already!!! We are looking at days now and I'm just beside myself we all are. I'm so mad as Dr said her kidneys are so bad as severely dehydrated, I've been telling the oncologist, Macmillan and our gp for months she's not drinking enough but because mum argued she was they took her word not mine and didn't do iv fluids, I could really punch one of them!!! Going to try for some sleep now before heading back tomorrow xx

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Feeling totally lost

Postby boa » Wed Apr 27, 2016 8:15 am

Shelda, I'm so sorry to hear this. You have done brilliantly to support your Mum. I'd just like to comment on what you say about your Mum not drinking enough but your Mum saying she was. One thing, amongst many, I learned whilst supporting my husband through his journey was that it was very easy to 'take over' and try to make decisions for him. But I think it is important that we let the person express him or her self. So please try not to hold anger and recognise that you have given you best to your Mum. I hope you find her more settled today.
Catherine

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Feeling totally lost

Postby Sueoliver » Wed Apr 27, 2016 10:09 am

Hi Shelda,
This sounds so familiar to my Mum I wanted to reply! Mum had the vomiting several times just like yours and stayed in hospital on IV fluids! My Mum had surgery to unblock her stent and bypass the blockage this definitely gave her more time and she managed to go to her granddaughters wedding. This might not be possible for your Mum but it's worth the question. Recovery is hard though Mum was in hospital for 3 weeks! They told us several times it was days or hours but Mum always proved them wrong!
It may be that your Mum is too unwell but never give up hope and keep asking all those questions. I never stopped asking the Dr's and nurses. Also look into the possibility of her being transferred to a hospice. They are truly wonderful and make such a difference.
I am thinking of you and I know exactly how you feel and what you are going through! You have done everything you can for your Mum just be there.
Stay strong and I hope things are a little better today. This disease has so many twists and turns. Keep asking those questions!
Thinking of you,
Love Sue xxx