A forum for advanced pancreatic cancer issues

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littlefairy
Posts: 11
Joined: Fri Aug 15, 2014 3:05 am

so upset about my mum

Postby littlefairy » Mon Aug 18, 2014 1:06 am

hi

My mum was finally diagnosed with PC cancer a week ago after numerous visits to Drs who said nothing was wrong despite her being in agony and losing over 4 stone in weight. They have said it is terminal and non operational, we live over 300 miles away so I hadn't seen her for a while, we visited today and I was shocked at how awful she looked.
Despite a morphine pump and oral morphine she is still in a lot of pain and is basically skin and bones, she didn't look like my mum anymore, she is so frightened and my dad is completely worn out as my disabled sister also lives with them.
Macmillan nurses are visiting twice a day but the pain is waking her in the night and dad is lucky to get 3 hours sleep, they are both 68 and Mum looks more like 80.
She has an appointment in 2 weeks to see if chemo will help but she is so frail and so jaundiced I don't think she is strong enough.
Yesterday she went from 1am to 4pm without passing any urine and when she does it is almost black in colour, am so scared she doesn't have much time left, any advice much appreciated.
thanks
Tracey

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: so upset about my mum

Postby jay » Mon Aug 18, 2014 9:28 am

I am so sorry about your mum little fairy, have they mentioned putting a stent in as this can ease the pain and the jaundice. It can be put in down the throat under local anathestic sorry cant spell it ,
x

littlefairy
Posts: 11
Joined: Fri Aug 15, 2014 3:05 am

Re: so upset about my mum

Postby littlefairy » Mon Aug 18, 2014 1:58 pm

thanks for your reply, yes she has a stent but nothing seems to be helping, they are increasing her morphine pump but she is still in so much pain it is so hard to see my mum like this.

brodders
Posts: 65
Joined: Fri Jun 20, 2014 7:51 pm

Re: so upset about my mum

Postby brodders » Mon Aug 18, 2014 5:30 pm

Hello little fairy,
Sorry to hear your news it is a very difficult time for you. Has your mum got a district nurse? My mum had one and she was excellent at helping her with pain control. Take care, Cate xx

littlefairy
Posts: 11
Joined: Fri Aug 15, 2014 3:05 am

Re: so upset about my mum

Postby littlefairy » Mon Aug 18, 2014 6:54 pm

She doesn't have a District nurse but the Macmillan nurse visits at least once a day, thanks for your reply

Tracey

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

Re: so upset about my mum

Postby rsk1974 » Mon Aug 18, 2014 9:04 pm

Big Hugs, can you also speak to her GP , to see what more they can do ?

SueH
Posts: 18
Joined: Fri Mar 21, 2014 9:33 pm

Re: so upset about my mum

Postby SueH » Mon Aug 18, 2014 9:26 pm

Hi littlefairy

So sorry to hear about your mum. There is another type of painkiller that many PC patients take. It is called pregabolin, it helps with a different type of pain than morphine. My husband was on this as well as the syringe driver and it really helped. It would be worth talking to the Macmillan nurse about it or her oncologist. If you contact the nurse team on this site they would give you any advice you need. Best wishes Sue

littlefairy
Posts: 11
Joined: Fri Aug 15, 2014 3:05 am

Re: so upset about my mum

Postby littlefairy » Tue Aug 19, 2014 2:21 am

so upset can't stop crying, to see my always glamorous mum reduced to a shadow of herself is soul destroying.
She managed to make it to the front door to see us off and was crying as our car pulled away, dad came out onto the road and as we left he shuffled back into the house after being so upbeat while we were there.
I phoned to say we would visit again this Sunday and he seemed so pleased, he told me he loved me which is something he has never ever said before.
Have had problems with my parents over stupid issues over the years but I can't face losing mum I love her so much even if I didn't always tell her.

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: so upset about my mum

Postby jay » Tue Aug 19, 2014 7:57 am

Sending you a massive hug little fairy
x

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: so upset about my mum

Postby sandraW » Tue Aug 19, 2014 10:47 am

Hi Little Fairy, please don't beat yourself up about the stupid issues you had with your mum and dad in the past, that's what real families are like, and I am sure they knew how much you cared really. You now have the chance to tell your mum, and dad, how much you do love them, it must be so hard for you being so far away, but good that you can visit again later this week.
I can't help with the pain issues, sorry, luckily my husband is still quite well, but having lost my mum 3 years ago I can understand how you are feeling, it is so hard to see someone you love so dearly suffering so much.
I hope your mum is well enough to get some treatment, or at least get her pain under control, thinking of you, take care sandrax

littlefairy
Posts: 11
Joined: Fri Aug 15, 2014 3:05 am

Re: so upset about my mum

Postby littlefairy » Tue Aug 19, 2014 4:04 pm

thanks for your replies, mum is a little more comfortable today, less pain and had a bit more sleep last night which meant my dad did too.
I really had no idea how aggressive and horrible PC is until mum had it, thinking of everyone on here who is going through this too. xx

littlefairy
Posts: 11
Joined: Fri Aug 15, 2014 3:05 am

Re: so upset about my mum

Postby littlefairy » Mon Sep 08, 2014 1:00 am

update on Mum

saw her today after 2 weeks as we live so far away and was shocked at how much she has gone downhill in that time. She is so weak and thin and barely able to walk, she had a nasty fall a few days ago and her lovely face is swollen, cut and bruised.
she is now on 70 (not sure of mg or dose) of morphine up from 40 2 weeks ago and dr has authorised dosage to be raised to up to 120, she is falling asleep every few minutes but I did manage to have a conversation with her albeit hard going for Mum.
Dad asked how I thought she was as he felt she was getting a lot worse, it's v hard on him, he looks completely worn out and there is no other family to help out.
TBH I think she only has weeks left although Dad is hoping she will make Xmas, just feeling completely drained now from the long trip and how ill Mum is.
Thinking of everyone on here who is going through the same horrible experience, feel a bit better just writing it down so thank you for this forum xx

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

Re: so upset about my mum

Postby Cathy » Mon Sep 08, 2014 2:27 pm

Hi,

I'm sorry to hear about your Mum and I know how painful it is to see someone you love in pain and so poorly.

I wonder if you have discussed with your parents (or your Macmillan nurse has) the possibility of going into a hospice? This doesn't need to be a permanent thing, your Mum could go in, get meds sorted so she is more comfortable, and then come home again. It would also give your Dad a bit of respite as it sounds like he probably (through no-ones fault) has the most caring responsibility.

Cathy xx

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

Re: so upset about my mum

Postby SusannaUK » Tue Sep 09, 2014 11:34 pm

Hi Tracey,
I'm so sorry to hear about your Mum. I also know how it feels to see someone who was very strong and lively before so poorly.
What Cathy wrote can be a possibility for your Mum. My husband was really poorly and weak, in a lot of pain when he was diagnosed, lost an awful lot of weight. When the community nurse decided to take him to a local hospice. He spent 2 months there, the doctors and nurses stabilized him, put his pain under control and he came home with almost no pain. So I also think hospice would be a good idea. try to discuss this with her nurses, they might be able to help you in this.
Thinking of you, take care.
Susanna x

littlefairy
Posts: 11
Joined: Fri Aug 15, 2014 3:05 am

Re: so upset about my mum

Postby littlefairy » Sun Sep 14, 2014 2:54 am

thanks for replies and support mum was meant to have
a stent today but they couldn't do it, she is due to have op monday but will have to have a coloskiply bag and stay in for 5 days, I think she is too weak for this tbh, she is already using a walkier.