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sandraW
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: Time

Postby sandraW » Tue Aug 14, 2018 11:38 am

Fairy, I am so very sorry to hear about your Mum. The feelings you have about not having done enough are what we all feel, because we love them so much we want to do all we can to help make them well again, but unfortunately we can't make that happen as much as we wish we could.
My husband was in denial too, that was his way of handling it, who can blame them, it takes someone very strong to face up to something so serious. I am sure your mum is frightened but I am sure the hospice will understand this and adjust her drugs to make it easier for her.
All I can do is send you love and strength to help you and your mum face this difficult journey, my husband in very similar circumstances to your mum, just went to sleep, it was very peaceful I wish the same for your mum, sending love and hugs sandrax

Fairy
Posts: 15
Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Tue Aug 14, 2018 7:04 pm

Sandra,
Thank you so much for your kind words. I just hope as you say the hospice can find the right drugs to keep mum comfortable. Think that’s about all I can hope for. Sending you some love too, I’m sure losing your husband has been so very hard. Thank you for caring enough to post,
Love from
Fairy x

Kerry
Posts: 20
Joined: Wed Jun 20, 2018 7:22 pm

Re: Time

Postby Kerry » Tue Aug 14, 2018 10:02 pm

Fairy please don’t feel guilty. The pain of seeing a parent going through this is more than enough to bear and from what you’ve said you can’t of done anymore.
I’ve said it before but this disease is cruel and wicked. We can only do our best to support our loved ones each step of the way and take each hour of each day at a time.

My poor dad has gone downhill today. The nurse spoke to me today to say he had entered the ‘deterioring’ stage and the doctor later told us he was now in the ‘dying stage’. Even though I knew it was coming it’s still so hard to take in. I’ve been offered some counciling at the hospice and I’ve decided to accept. I have so many emotions all mixed up and although I’m sure it’s normal I decided it may help to talk to someone outside of the family.

I truly hope you find some support and I hope your mum is kept as comfortable as she can be.

Kerry xx

Fairy
Posts: 15
Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Fri Aug 17, 2018 11:06 am

Kerry,
I am truly sorry to hear about your dad, there is no limit to this disease and it’s wickedness.
I think counselling sounds like a way to talk some of your feelings out, it’s so hard to know what to do with it all.
The hospice are talking about sending mum home next week if she remains stable over the weekend, part of me is pleased and part of me terrified at what comes next. Do I give up work to care for her as she deteriorates, how do I know when the time is right? Feels like I’m flailing around in the dark. Can I get the help at home that I need at the right time? No answers really, one day at a time.
Please stay in touch, sending you love at this very difficult time xXx

Fairy
Posts: 15
Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Tue Sep 18, 2018 10:34 pm

PCUK Nurse Rachel R wrote:
> Hi Fairy
>
> I am glad to hear that Mum is going to the hospice for a time and I do hope
> they are able to get on top of her symptoms. Please do keep us updated.
> Thinking of you.
>
> Rachel
>
> Rachel Richardson
> Pancreatic Cancer Specialist Nurse
> Support Team
> Pancreatic Cancer UK
> email: nurse@pancreaticcancer.org.uk
> support line: 0808 801 0707


Dear Rachel,

I am sorry to bother you but tonight I find myself at my mums, staying the night for the first time as she’s really not very well. She has her syringe driver with ranitidine, metaclopromide and oxycodone in it. She’s taking gabapentin too 600mg three times a day, lansoprozole and paracetamol. She fell yesterday trying to go to the toilet, I managed to get her up with a struggle and I think she’s lucky to have escaped with bruises.
Her appetite isnt great but she’s really only complaining of tightness around her tummy says she feels it’s gripping her. I have liquid oxycodone that I’m allowed to top her up with so one day at a time.
I am concerned about her urine though it’s so dark like mahogany......the hospice said that as her most recent scan showed the cancer had invaded the liver I presume it’s that that is causing the problem. This probably sounds daft but she smells different too, the jaundice is awful. She is sleeping all the time now, I’m hoping Marie curie nurses can help me overnight sometimes, I’m a wife and mum to three kids with a full time job, I have so much to organise. My head is overloaded.
I just hope she’s not in too much pain, she’s had enough now. Thanks for listening, Amanda xXx

sandraW
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: Time

Postby sandraW » Wed Sep 19, 2018 8:31 am

Fairy,
Just wanted to respond to your post, this is exactly how my husband was, it will be the jaundice that is causing the dark urine. And I also understand what you say about your mum smelling different too that also happened with my husband. I hope you can get some help, as its so tiring for you too, sending love and a hug sandrax xx

PCUK Nurse Jeni
Posts: 1019
Joined: Mon Jun 14, 2010 1:30 pm

Re: Time

Postby PCUK Nurse Jeni » Thu Sep 20, 2018 5:04 pm

Hello Fairy,

Sorry to hear about your mum, and that she has had a fall - just wondering, did you call the ambulance when she fell to make sure she was ok? Has she complained at all since then, or is there any obvious injury? Has the gp checked her over or not?

You mention the tummy feeling tight - does she have any fluid in her tummy at all, are you aware or not? And if so, has she been given any offer to treat this? Sometimes, fluid can accumulate in the abdominal cavity, and this can cause the tummy to feel tight - many would describe it as a "pregnant belly" or being tight like a drum, so to speak. Is she feeling uncomfortable at night trying to get into a comfortable position? Have you been using the oxycodone at all, and how often have you had to use it? Has anyone reviewed her medication at all?

As Sandra has said, the urine issues will be caused by the jaundice - do you know if she has a stent inserted at all? Is your mum just under the care of the gp now?

Have you had a referral done for Marie Curie? Are you able to see your own gp for some help with regards to some time off? It does seem as though you have a lot on your plate right now, and it might be good for you to have some time to allow you to concentrate on your mum right now.

Please do contact us at the below email address should you need to.


Kind regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Fairy
Posts: 15
Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Wed Sep 26, 2018 8:15 pm

Dear Jeni,

Apologies for not replying sooner, I haven’t had a minute, but thank you so much for the reply.
If I’m honest I feel really down at the moment, mum didn’t want to go to hospital after her fall, we got her up, cleaned her up and back to bed. I did ring the hospice for advice and whilst they would have preferred mum be checked over mum did not want to spend a night on a trolley in a and e. Long story short, mums elbow and right arm were the worst casualty, huge bruise and swelling, district nurses have kept an eye and today whilst very black the swelling has reduced a little. She’s not keen to use it due to pain which is making movement difficult. Nurses agreed that the hospital probably wouldn’t do much other than sling and rest.
After a few days of struggling in and out of a queen size bed we have a hospital bed. I feel like crying, it doesn’t matter how I move mum I can’t find a comfy position for her as she’s got a pressure sore on her bottom and her spine, her arm is sore and the other arm has the driver in it.
Thrush in mums mouth is really bad.......so many mouthwashes nystan and difflam, fluconazole, nothing helps.
Mum stopped swallowing her paracetamol and gabapentin tablets yesterday, said she can’t do it anymore. The driver is dispensing ranitidine, oxycodone and metaclopromide. I’ve given her a couple of 2ml doses of oxynorm today and still she complains of tightness. I’m still doing the clexane injections, it’s all just miserable. The district nurses are asking does mum want to alter the meds in the driver and she’s saying no? Hospice nurses came in today and she didn’t want a wash and a change of nightie, she just let them help find her a comfy position, I just can’t seem to feel as if I’m doing “enough” it all feels inadequate, I just want her comfy and free of pain, can’t find the words.
Nobody has diagnosed fluid in mums tummy, no mention of that. Gp a waste of space, mum is an inconvenience to him, nurses are amazing, hospice reviewed her meds in August, they were great. Marie curie only available up to two nights a week, they arrive at 10pm, I get home about 10.45pm. I need to make packed lunches for my kids, tidy my house, wash myself, by the time I get into bed it’s time to come back to mum at 7am when Marie curie leave. Please don’t misunderstand me Marie curie are a blessing, I just don’t have any time.
I haven’t worked since Wednesday 19/09/18, no wages for me. My husband no help. I’m living in with mum. Nothing prepares you for this. My poor poor mum.
Everything aside, thanks for listening.
Fairy.

PCUK Nurse Rachel R
Posts: 27
Joined: Thu Jan 25, 2018 10:52 am

Re: Time

Postby PCUK Nurse Rachel R » Fri Sep 28, 2018 12:58 pm

Dear Fairy

It's Rachel here. I am so sorry to hear about how tough things are for you and Mum at the moment. My heart goes out to you.

Please don’t feel inadequate, you are doing so much for Mum and am certain you will be caring for her so well. Mum will know how much you are trying your very best for her. There are things outside of your control but you are making a difference.

Not sure if you’re aware but you are entitled to some financial benefits. If you’re not able to work or even if a person is working less than 20 hours per week then you are able to claim carers allowance. Mum should also be claiming PIP (if she’s under 65) or Attendance allowance if over 65. Both these benefits are not means tested and go on health grounds. Your Mum may also be able to claim employment and support allowance (ESA). You may have already looked into this but if not contacting your nearest Macmillan Information and Support Centre would be a good step.

I’m aware that it might be better for us to have a chat on the phone or email privately so that we can try to help and support you. I appreciate how limited your time is but the offer is there. Contact details are in the signature below.

Thinking of you,

Rachel Richardson
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Fairy
Posts: 15
Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Tue Oct 09, 2018 10:23 pm

Well, now I get to post what I was dreading posting. Mum passed away at 4.53pm yesterday 08/10/18.
The disease won. I have no words and have never seen or experienced anything like it. My heart goes out to all who continue to battle and to their families. I am lost.

Michaela1
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

Re: Time

Postby Michaela1 » Wed Oct 10, 2018 9:47 am

So sorry for your loss fairy. I doubt I will be any consolation to you knowing that there is no more physical pain anymore! I know you will be going through huge emotional pain, but please try and take some comfort from your mum's relief from her pain. Again so sorry for your loss, I know I will face the same pain as your mum one day, but I hope I have the support from my partner as you gave your mum.x

PCUK Nurse Rachel R
Posts: 27
Joined: Thu Jan 25, 2018 10:52 am

Re: Time

Postby PCUK Nurse Rachel R » Wed Oct 10, 2018 2:08 pm

Dear Fairy

I am so sorry to hear your sad news that you lost your lovely Mum. Please do accept our sincere sympathy at such a difficult time.

We are here if ever if you wish to talk or even just to listen.

You did everything you could for Mum, I'm sure she would be incredibly proud of you.

Thinking of you,

Rachel

Rachel Richardson
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Time

Postby Veema » Wed Oct 10, 2018 5:31 pm

So sorry for your loss Fairy. Please do take some comfort that your lovely Mum is now free from pain and suffering and know that you did your absolute best for her. It's one of the hardest things I've ever had to do...watch someone suffering and feel totally useless...so your feelings are understandable.

Much love and strength as you face the next steps.

Vx

Fairy
Posts: 15
Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Thu Oct 11, 2018 8:51 pm

Michaela1 wrote:
> So sorry for your loss fairy. I doubt I will be any consolation to you
> knowing that there is no more physical pain anymore! I know you will be
> going through huge emotional pain, but please try and take some comfort
> from your mum's relief from her pain. Again so sorry for your loss, I know
> I will face the same pain as your mum one day, but I hope I have the
> support from my partner as you gave your mum.x

Dear Michaela,
Thank you for responding, your kind words mean a lot. I really hope I haven’t upset you or made you scared of what lies ahead, that was not my intention. I just feel (amongst other things) frustrated that this hideous disease has taken another life and not enough money is being fed into the system to research it. You are in my thoughts, warmest wishes, please look after yourself love fairy xXx

Michaela1
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

Re: Time

Postby Michaela1 » Sat Oct 13, 2018 8:44 am

Hi Fairy,
No it is ok, you have not scared me, only this God awful disease does that! I wouldn't say I am scared, although moments of dread do go through your mind when you read others experiences. However equally so the words of stories also bring you comfort and hope.
You were a star for your mum, and above all I wanted you to realise that as it was very much coming across that you felt you were not doing enough, whereas in reality you were doing more than anyone could have!
My wife and I are struggling with the decision that when my time comes would I be better of dying at home or in the hospice. I don't want to be a burden or be in too much pain so favour the hospice for my wife's sanity.....she however wants to look after me at home,and for me to be around familiar things and the comfort of my own home. So you see other people's experiences such as your own helps!