A forum for advanced pancreatic cancer issues

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karen68
Posts: 10
Joined: Mon Oct 13, 2014 1:06 pm

Not long left I fear

Postby karen68 » Fri Oct 17, 2014 2:50 pm

I have been reading the forum for several weeks and have gained lots of knowledge and insight into this awful cancer which is taking my lovely dad from us.
Dad is 78 and was diagnosed with untreatable PC in May this year, and given just 2 - 3 months. Needless to say we are so happy that he is still with us. However, I feel that time is not on our side and in the pit of my stomach I know that the end is very near.
He has suffered greatly from ascites, having 11 litres drained the first time a month ago and since then, back in for a 5 litre and 6 litre drain. The last time was this time last week when he also had an infection, spent 5 days in hospital being treated with antibiotics.
He was discharged yesterday and back home. The care team are coming in to give him the intravenous antibiotic daily for the next few days. Dad is now in bed and sleeping a lot of the time. He is still managing to eat and drink in very small quantities and thankfully is not in pain. However today, when they came to give him his antibiotic they have advised that his oxygen levels have decreased greatly since yesterday and we are now waiting for a doctor to come out to see him. What I really need to know is are my gut feelings right? Are we close to the end and are low oxygen levels an end of life sign? I can't bear the thought of losing him, but at the same time need to try and prepare myself to be strong for my mum and my family if we don't have long left.
I already feel better for just typing this post. I have cried many tears and shared so many people's experiences on this forum that it feels like I am talking to people I already know.
Thanks for reading this

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

Re: Not long left I fear

Postby sandraW » Fri Oct 17, 2014 3:44 pm

Hi Karen,
Welcome to the forum, the place no one wants to be, but where everyone is so helpful. I am sorry that I am not really able to give you any guidance regarding your Dad, except to say that I do think you should follow your gut instinct in these matters. Perhaps you could have a word with the nurses visiting your Dad, for their opinions.
You seem as though you are doing really well, and it is lovely that you had longer than expected with your lovely Dad, this truly is a wicked disease. Please do post when you can I do think it helps, take care sandrax

rsk1974
Posts: 80
Joined: Thu Jul 31, 2014 1:21 pm

Re: Not long left I fear

Postby rsk1974 » Fri Oct 17, 2014 4:20 pm

As hard as it is your gut feeling is often right. My dad suffered with ascites too. He passed away in hospital, but he seemed more chesty when he talked and then a bit of a rattle almost in the last 24 hours.all you can do is ask the medical team, they can generally give you an idea. I hope how ever far Away the end is it is painful and peaceful. X

Ruthos1
Posts: 21
Joined: Sun Feb 02, 2014 10:28 pm

Re: Not long left I fear

Postby Ruthos1 » Fri Oct 17, 2014 10:20 pm

Hi Karen,
I too am in a similar situation to you.
My darling mum who was diagnosed last Xmas eve ( told she had weeks/months)with Pancreatic cancer is struggling now.
She can barely eat anything.She is on morhine morning and evening and when I get to the UK( I lve in Corfu) she wants me to contact the McMillan nurses as she needs her painkillers increased.
I will be with her on Wednesday and will not leave .
She is amazing pyschologically and so appreciates each day.I can't bare the thought of losing her and am trying so hard to prepare myself .
I wend you lots of love and strength to help you dal with the difficult times ahead.
Ruthos
X

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: Not long left I fear

Postby LMD » Sat Oct 18, 2014 12:30 am

Hello
I'm sorry I don't have any answers but just wanted to reply and send you a virtual hug. Also in a similar position - I understand how you are feeling.

Everything seems so very surreal ...
Take care xxx

Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: Not long left I fear

Postby Dollysdaughter » Sat Oct 18, 2014 1:25 pm

Hi Karen, hope you are ok. I am in a very similar situation with my mum. I don't know if you are nearing the end with your dad medically speaking but I am just getting used to taking a day at a time. Mum seems close to the end one day then a bit stronger the next, then back to being weak and still again. It just seems really hard to tell. My thoughts are with you and I hope its all as good as it can be x

karen68
Posts: 10
Joined: Mon Oct 13, 2014 1:06 pm

Re: Not long left I fear

Postby karen68 » Mon Oct 20, 2014 10:56 am

Thank you for your replies and your support, it really does help, although I wish with all my heart that all of us weren't going through this awful awful experience with our loved ones.
Dad has had an up and down weekend, but is sleeping the majority of the time now. I keep telling myself that while's he's sleeping he's not in any pain. I find myself thinking it would be better for him if he slipped away in his sleep before things get any worse for him, but then feel so guilty for even allowing the thought to enter my head - I don't want him to go.
Thank you again for taking the time to reply - sending you all love and strength. Karen x

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

Re: Not long left I fear

Postby Sueoliver » Mon Oct 20, 2014 6:21 pm

Hi Karen my mum was also diagnosed in May this year! I actually feel heartbroken! I understand completely how you feel. Thinking of you and all I can say is stay strong. Sue x

rsk1974
Posts: 80
Joined: Thu Jul 31, 2014 1:21 pm

Re: Not long left I fear

Postby rsk1974 » Mon Oct 20, 2014 9:04 pm

Hi Karen. Don't feel guilty, I also had thoughts like that for my dad, he luckily had no.pain, but kept thinking I hope he sleeps and doesn't wake up, to stop his suffering. I felt guilty thinking that and afterwards I felt so guilty that in a way it was a relief that he had gone. No more seeing him deteriorating, no more turning up to hospital hearing more bad news or being stressed about what would he be like as we turned the corner into the ward. I think you live sleep breath the diagnosis and symptoms for so.long so many thoughts go through your mind. Big hugs.

karen68
Posts: 10
Joined: Mon Oct 13, 2014 1:06 pm

Re: Not long left I fear

Postby karen68 » Wed Oct 22, 2014 12:46 pm

Thank you all for your support - this forum is really my only outlet right now.
Dad's hanging on in there. He's now being treated for a chest infection and has gone back in today for his fourth ascitic drain. He is dreadfully weak and a little confused but he's still with us :-)
He's developed an extreme thirst today though - not sure what that's about as he hasn't been eating or drinking for a couple of days now.
Let's hope this drain brings him some relief.

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

Re: Not long left I fear

Postby Cathy » Wed Oct 22, 2014 8:39 pm

Hi Karen

Thinking of you. I know how hard this is but it sounds as if your Dad is comfortable (albeit thirsty). My partner was thirsty too towards the end of his life which I think was because he got very clammy. I bought him one of those sports bottles that runners use and kept it topped up with water which he liked.

I hope you are getting support for yourself too.

Sending love

Cathy xx

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: Not long left I fear

Postby SusannaUK » Thu Oct 23, 2014 12:14 am

Hi Karen,

I just read your thread. It must be very hard for you now. Just to let you know that I am thinking of you and your Dad!
Take care,
Susanna x

luce873
Posts: 15
Joined: Mon Oct 01, 2012 1:29 pm

Re: Not long left I fear

Postby luce873 » Fri Oct 24, 2014 10:47 pm

Dear Karen,

I'm so sorry you are on this terrible journey, one which I know only too well.

My mum also suffered with ascites and had to keep going into hospital to have her tummy drained. That was until they fitted a Plurex drain - these are normal used for patients with lung cancer ( I think) but are less commonly used for ascites and are put into your abdomen. It was put in under local anaesthetic and mum was home the next day with a little tube dangling out of the skin on her tummy. To start with, the district nurses came and plugged the tube into bottles and drained off the fluid but they then showed me what to do and I was able to drain the fluid off myself and I can honestly say it transformed mums quality of life. She actually got better for a few months which was fantastic and meant no more admissions to hospital. It didn't hurt at all and made life more bearable.

Thinking of you and your family, all the best to your dad

Lucy xxx

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: Not long left I fear

Postby Bowie » Sun Oct 26, 2014 11:47 pm

Dear Karen, I am so sorry you and your family are going through this pain. It is completely impossible to understand just how relentless and cruel this devasting disease is unless you are dealing with it or suffering along with a loved one. Thinking of you and your family and wishing you all the best. Fiona X

PCUK Nurse Dianne
Posts: 299
Joined: Tue Aug 14, 2012 3:29 pm

Re: Not long left I fear

Postby PCUK Nurse Dianne » Fri Oct 31, 2014 10:14 am

Hi Karen,

Sorry to hear your poor father is struggling. I noted that you mentioned he has had an extreme thirst, this may be due to 2 issues. Often due to the build up ascites, patients often feel they should not take extra fluids as they feel it will make the ascites worse, in most instances this is not so, and in many instances you may find that the thirst is due to some dehydration. Hopefully this would be checked in the hospital. The other reason for extreme thirst may be the onset of diabetes, and i wonder if this has been tested in your father? The usual scenario is that patients will have extreme thirst and pass large amounts of urine. It may be worth asking about this, as this is also a contributor to patients feeling lethargic and drowsiness also. I hope this is helpful and please do not hesitate to be in touch if we can help furhter.

Dianne
Pancreatic Cancer Specialist Nurse
Support Team