Not long left I fear

[karen68]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Guest]

Hi Karen,

Sorry to hear about your dad. How is he now?

Like others have said, are you getting some support for you? We have to be strong for our loved ones, and we can keep up the facade, butwhen we are alone, well, I know I need someone to help me up.

Hope you and your dad are ok.

Leila xx

[karen68]

Thank you so much to everyone who has replied and for your support. My brave dad lost his fight on Tuesday 11th November, He fought hard right to the very end and he maintained his dignity throughout. I am proud to be able to call him my dad.

We are asking for donations to Pancreatic Cancer UK at his funeral next week. The support I received from the Nurses on here was fantastic, and this forum has been such a support. I hope that one day we know more about this dreadful cancer and more lives are able to be saved.

Wishing each and every one of you all the very best as you or your loved ones fight this disease; stay strong and positive.

Karen

[Didge]

So sorry to hear your sad news. Thinking of you x

[J_T]

So sorry to hear of your loss Karen. My thoughts are with you at this sad time.

Julia x

[wackywacky]

So sorry for your loss x

[belgrade]

Thinking of you x

hilary

[sandraW]

Sending condolences to you and all the family, take care ((hugs))sandrax

[rsk1974]

So so sorry, thoughts are with you all.x

[Slewis7313]

Sorry to hear your sad news Karen. I too am thinking of you and your family at this difficult time.

Steve

X

[Cathy]

Dear Karen

I'm so sorry to hear your sad news. My condolences to you and to your family for now and for the difficult days ahead

Cathy xx